Public Information About Osteoporosis: What's Available ...

Public Information About Osteoporosis:What's Available, What's Needed?

September 1994

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Recommended Citation: U.S. Congress, Office of Technology Assessment, PublicInformation About Osteoporosis: What’s A~’ailable, What’s Neede(i;)4ac’k,qroli/l(iPaper, OTA-BP-H- 131 (Washington, DC: U.S. Government Printing Office, July 1994).

Foreword

Many people have or are at risk of osteoporosis. Older white womenare most likely to have osteoporosis, but younger women, men, andethnic minority persons are also at risk. Although public awarenessof osteoporosis has grown in recent years, most people are not

knowledgeable about the disease.Knowledge about osteoporosis is important because some proposed meth-

ods of prevention and treatment involve lifestyle behaviors, such as calciumintake and exercise, that require awareness and understanding for compliance.Other proposed methods of prevention and treatment involve the use of medi-cations that may be recommended by a physician or other health care profes-sional, but individuals must decide initially whether to contact a health careprofessional about osteoporosis and then whether to comply with the recom-mendations they receive. Public information is needed to help people make in-formed decisions about alternate methods of prevention and treatment.

This background paper describes the existing public information about os-teoporosis and discusses problems that limit its usefulness, including problemsin the dissemination and targeting of information to different types of peoplewho have or are at risk of the disease. It also discusses problems that arise be-cause of the way research findings are presented in the mass media and thewidespread dissemination of information about medications that are availableon the rnarket but have not been approved by the FDA for osteoporosis. In1993, Congress mandated the establishment of a national resource center onosteoporosis and related bone diseases. The analysis of problems with existingpublic information in this document suggests ways in which the new resourcecenter and other organizations interested in the prevention and treatment of os-teoporosis can increase public knowledge about the disease.

This background paper is one of four documents resulting from OTA’s studyof policy issues in the prevention and treatment of osteoporosis. Another back-ground paper, Hip Fracture Outcomes in People Age 50 and 0ver, is also beingissued in July 1994. Two other documents, one on thescreening for osteoporosis and the other on researchteoporosis, will be issued later this year.

costs and effectiveness ofand training issues in os-

ROGER C. HERDMANDirector

Advisory Panel

Robert P. Heaney, ChairpersonJohn A. Creighton ProfessorCreighton UniversityOmaha, NE

Steven R. CummingsResearch DirectorDivision of General Internal

MedicineCollege of MedicineUniversity of CaliforniaSan Francisco, CA

Barbara L. DrinkwaterResearch PhysiologistDepartment of MedicinePacific Medical CenterSeattle, WA

Deborah T. GoldAssistant Professor of Medical

SociologyCenter for the Study of Aging and

Human DevelopmentDuke University Medical CenterDurham, NC

Susan L. GreenspanDirectorOsteoporosis and Metabolic Bone

Disease ClinicBeth Israel HospitalBoston, MA

Caren Marie GundbergAssistant ProfessorDepartment of OrthopedicsYale University School

of MedicineNew Haven, CT

Sylvia HouglandAssociate DirectorLaboratory for Clinical

ComputingVA Medical CenterDallas, TX

C. Conrad Johnston, Jr.DirectorDivision of Endocrinology and

MetabolismIndiana University School of

MedicineIndianapolis, IN

Shiriki K. KumanyikaAssociate Director for

EpidemiologyCollege of MedicinePennsylvania State UniversityHershey, PA

Edward O. LanphierExecutive Vice President for

Commercial DevelopmentSomatix Therapy CorporationAlameda, CA

Donald R. LeeVice PresidentProcter and Gamble

PharmaceuticalsNorwich. NY

Robert LindsayChief, Internal MedicineHelen Hayes HospitalWest Haverstraw, NY

Betsy LoveProgram ManagerCenter for Metabolic Bone

DisordersProvidence Medical CenterPortland, OR

Robert MarcusDirectorAging Study UnitVA Medical CenterPalo Alto, CA

Lee Joseph Melton, IllHead, Section of Clinical

EpidemiologyDepartment of Health Sciences

ResearchMayo ClinicRochester, MN

iv

Gregory D. MillerVice PresidentNational Research/Technical

ServicesNational Dairy CouncilRosemont, IL

Morris NotelovitzPresident and Medical DirectorWomen’s Medical and Diagnostic

Center and the ClimactericClinic, Inc.

Gainesville, FL

William Arno PeckDeanWashington University School of

MedicineSt. Louis. MO

Diana PetittiDirectorResearch and EvaluationSouthern California Kaiser

Permanence Medical CareProgram

Pasadena, CA

Neil M. ResnickChief, GeriatricsBrigham and Women’s HospitalBoston, MA

Gideon A. RodanExecutive DirectorDepartment of Bone BiologyMerck, Sharp and Dohme

ResearchWest Point, PA

Mehrsheed SinakiProfessor, Physical Medicine and

RehabilitationMayo Medical SchoolRochester, MN

Milton C. WeinsteinHenry J. Kaiser ProfessorHealth Policy and ManagementHarvard School of Public HealthBoston, MA

Note: OTA appreciates the valuable assistance provided by the advisory panel members. The panel does not, however, necessarilyapprove, disapprove, or endorse this background paper. OTA assumes full responsibility for the background paper and the accuracy ofits contents.

Project Staff

Clyde BehneyAssistant Director

Health, Education andEnvironment Division

Nancy CarsonProgram Director

Education and Human Resources

Sean TunisProgram Director

Health

PRINCIPAL STAFFKatie MaslowProject Director

Kerry KempManaging Editor

ADMINISTRATIVE STAFFCecile ParkerOffice Administrator

Education and Human Resew-ces

Beckie EricksonOffice Administrator

Health

Linda RayfordPC Specialist

Tamara KowalskiSecretary

c ontents

Introduction and Overview 1Public Knowledge About Osteoporosis 10Information About Osteoporosis Currently Available

to the Public 11Public Information About Osteoporosis Available from

the Mass Media and Commercial Publishers 11= Information Available from the Mass Media 11= Information Available from Commercial

Publishers 16Public Information About Osteoporosis Available from

Private Organizations 16■ Information Available from the National Osteoporosis

Foundation 17■ Information Available from Other Voluntary

Associations 19■ Information Available from Individual Health Care

Organizations 22= Information Available from Dairy Industry

Organizations 24■ Information Available from Pharmaceutical

Companies 27Public Information About Osteoporosis Available from

Federal and State Government Agencies 31● Information Available from the National Institutes of

Health 31■ Information Available from the Food and Drug

Administration 34■ Information Available from the Office of Disease

Prevention and Health Promotion 36■ Information Available from the Office on Women

Health 37■ Information Available from the Centers for Disease

Control and Prevention 37■ Information Available from the Administration on

Aging 37■ Information Available from the Department of

Agriculture 38

vii

● Information Available from the State OsteoporosisPrograms 39

Conclusion 39

APPENDIX A: Coverage of Osteoporosis inConsumer Magazines 43

References 49

Index 57

. . .Vlll

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Public InformationAbout Osteoporosis:

What's Available,What's Needed?

INTRODUCTION AND OVERVIEW

o steoporosis is a disease characterized by a decreasedamount of bone and increased fragility of the remainingbone. Figure 1 illustrates the harmful effects of osteopo-rosis on bone. Because of their decreased amount of

bone--usually referred to as low bone mass or low bone den-sity ‘—and increased bone fragility, people who have osteoporo-sis are more likely than other people to experience fractures. Thefractures most often attributed to osteoporosis are fractures of thewrist, spinal vertebrae, and hip, but other fractures may also beattributable to osteoporosis.2

Many people have or are at risk of osteoporosis. Estimates ofthe number of people affected vary, depending on several factors,including the level of bone density defined as osteoporosis. In1993, two international panels of osteoporosis experts defined os-teoporosis as bone density more than 2.5 standard deviations be-low average bone density in healthy young adults. Data collectedbetween 1988 and 1991 as part of the third National Health andNutrition Examination Survey (NHANES III), a large-scale sur-vey of a nationally representative sample of noninstitutionalizedpeople of all ages, indicate that 17 to 20 percent of American

‘ The term bone mm.s means the amount of hme miner-ii] (primarily calcium) in a par-ticular b(mc. The [cm) bone densl~ rnetans the armmnt of b(mc mineral in a unit of boneMind in terms of either area or volume.

2 The Study of Osteiymotic Fractures, a multicentcr study ]nw)lving rm~re than 9,00I3white w(m]en age 65 and over, found that fractures of the upper am], collar hme, hand,nb, pelvis, leg, foot, and t(w were statistically more likely to occur in w(mlcn with lowb{me density than other women and theref{we are attributable, at least In part, to osteopm)-”sis ( I 04).

2 I Public Information About Osteoporosis: What’s Available, What’s Needed?

Public Information About Osteoporosis: What’s Available, What’s Needed? 13

women age 50 and over—approximately six toseven million women––have osteoporosis, as de-fined by the expert panels (55). Another 12 to 17million women age 50 and over have low bonedensity, defined by the expert panels as bone den-sity between 1 and 2.5 standard deviations belowaverage bone density in healthy young adults (55).The comparable figures for men of all ages andwomen under age 50 are not yet available.

As interest and concern about osteoporosishave increased in recent years, educational materi-als and programs have been developed to informthe public about who is at risk of the disease andwhat can be done to prevent and treat it. Despitethese efforts, most people are not knowledgeableabout osteoporosis. Some people are simply notaware of the disease. Others are aware but notwell-informed about it. Some people who areaware of osteoporosis are not worried about it.Others, who are worried about osteoporosis, arefrustrated by what they perceive as a lack of in-formation about the disease.

Each week and especially following any mediareport about osteoporosis, the National Osteopo-rosis Foundation, a private, voluntary organiza-tion, receives hundreds and sometimes thousandsof calls and letters from people seeking informa-tion about the disease (95). Box 1 presents ex-cerpts from letters that illustrate some typicalquestions and concerns of people who contact theNational Osteoporosis Foundation for informa-tion.

In 1989. several congressional committees andindividual senators and representatives requestedthat the Office of Technology Assessment (OTA)conduct a study of policy issues in the preventionand treatment of osteoporosis.3 The request lettersasked about the appropriate role of public in-formation in the prevention and treatment of os-teoporosis, to whom the information should betargeted, and what the message should be. To ad-

dress these questions, OTA identified and ana-lyzed the available public information aboutosteoporosis. OTA also contracted for a survey ofconsumer magazines to learn what is being saidabout osteoporosis in these magazines and towhom the information is targeted ( 15).

OTA discovered a large quantity of public in-formation about osteoporosis. As attention towomen’s health issues has grown in the past fewyears, the amount of public information about os-teoporosis has also grown.

The existing print information about osteopo-rosis consists primarily of newspaper and maga-zine articles and 2- to 8-page handouts, such asfact sheets, brochures, and booklets. Broadcast in-formation consists of news reports, public serviceannouncements, and health information featureson radio and television. The bulk of this public in-formation is produced by the following sources:●

■

✘

the mass media (i.e., television, radio, newspa-pers, and magazines) and commercial publish-ers;private organizations (i.e., the National Osteo-porosis Foundation, other voluntary associa-tions, health care organizations, dairy industryorganizat ions. and pharmaceutical compa-nies); andfederal and state government agencies.

This OTA background paper describes the publicinformation about osteoporosis that is availablefrom these sources. Clearly, there is a discrepancybetween the large quantity of public informationabout osteoporosis, on the one hand, and the per-ceived lack of information and most people’s lackof knowledge about osteoporosis, on the otherhand. OTA believes that several interrelated prob-lems account for this discrepancy. First, the exist-ing public information about osteoporosis is notsufficiently disseminated. As a result, the informa-


From Iowa

“I would Iike to have the latest literature you have on osteoporosis—what you can do, take, and eat that

will help it from doing any more damage than it’s done already for me, ”

From Nevada

“My wife’s Illness has been diagnosed as osteoporosis and chrome pain. She has suffered several com-

pression fractures in her spine The medical center said her bones are paper-thin, and nothing could be

done about her condition If you have any Information or suggestions about treatment for osteoporosis

that could possibly in any way be of help to my wife or of doctors that really are the best and specialize in

this area, I would truly appreciate the information."

From Missouri

“Your address was given over TV, “Good Morning America, ” to write to for information on osteoporosis.

My bone scan shows osseous atrophy and fx deformations of T8 and T9. Severe pain started about Jan.

29th. Diagnosis-–osteoporosis. I am under doctor’s care, I thought if you had any Information that I might

read to help or learn more about osteoporosis I would appreciate this material. I am 77 years old. ”

From Florida

‘So much IS written in your bulletin about prevention and almost nothing about what the patient can do

herself after she gets it. I have had, for example, 4 compression fractures, Some articles about helpful

exercises, activity, as well as recommended calcium and estrogen (how much) would be appreciated. We

need help too “

From North Dakota

“Please tell me about osteoporosis prevention What do you think of boron? Have you heard of Ethical

Nutrient Bone Builder? What do you think?”

From New York

Please send Information for my husband who IS suffering from bone deterioration, HIS mother has se-

vere arthritis and osteoporosis and IS now confined to a wheelchair due to her condition. My husband (55)

refuses to take calcium since his dentist claims that it can cause kidney stones Please send research

substantiating the need for 1500 mg. calcium (daily) if you think it might prevent further deterioration

Could you recommend an excellent doctor in New York City who could help him?"

SOURCE Letters provided to the Off Ice of Technology Assessment by the National Osteoporosis Foundation, Washington, DC

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(ion may not be available when people need it, and people who already have osteoporosis and need tothey are unlikely to know where to find it.

Second, much of the existing public informa-tion about osteoporosis is not tailored to the dif-ferent needs of particular population groups.Although there are exceptions, most of the exist-ing public information about osteoporosis focuseson prevention of bone loss and targets middle-aged and older white women. The focus on pre-vention of bone loss is appropriate for somepeople, but it does not meet the needs of other

know not only how to avoid further bone loss butalso how to prevent falls and fractures and how tocope with the disability and pain that often accom-pany the disease.

Targeting public information about osteoporo-sis to middle-aged and older white women is ap-propriate in a sense since these women are most atrisk of osteoporosis. Data from NHANES IIIshow that in each age group, women generallyhave lower bone density than men, and whites


generally have lower bone density than AfricanAmericans and Mexican Americans (54).4 The in-terrelationships of age, gender, race, and ethnic it yare complex, however, and bone density variesgreatly among individuals of the same age, gen-der, race, and ethnic group. Thus, some youngpeople have very low bone density; some menhave lower bone density than some women; andsome African Americans and Mexican Americanshave lower bone density than some whites. Tar-geting public information about osteoporosis tomiddle-aged and older white women does notmeet the needs of young people, men, and ethnicminority persons who are also at risk. In fact, thistargeting probably fosters the widespread miscon-ception that osteoporosis is a disease of middle-aged and older white women that need not concern

these other groups.Third, and most important, much of the existing

public information about osteoporosis is confus-ing, contradictory, and incomplete. To some de-gree, this problem is inevitable, given the frequentpublication of new research findings and the lackof definitive evidence for the efficacy of some pro-posed methods of prevention and treatment. As istrue in many fields of medical research, new find-ings about osteoporosis raise questions about pre-viously held ideas and make it difficult todetermine exactly what constitutes accurate in-formation about the disease at any given time.

The way the mass media present informationabout osteoporosis adds to the confusion and con-tradictions that are inevitable in a changing medi-cal field. Research advances in osteoporosisprevention and treatment are frequently presentedin brief news reports that do not place the findingsin the context of other methods of prevention andtreatment or make clear which individuals aremost likely to benefit. The contraindications andside effects of new methods of prevention or treat-ment often are not reported. People who hear thesenews reports may. in fact, have the latest informa-

tion but still not know whether the information ap-plies to them or how it fits with other informationthey may have about the disease.

Americans are increasingly urged to becomeinformed about and take responsibility for theirown health. Reports in the mass media are oneway many people obtain health information.Some, and perhaps many, people use media re-ports as a basis for decisions about their ownhealth care and health-related behavior. A 1990 ar-ticle in Ladies Home Journal describes the new"Take-Charge Patient” who “does not simply fol-low doctors’ orders” but instead wants to knoweverything she can about her health. understandthe various options for prevention and treatment,and participate fully in decisions about her care(4). Such individuals—women and men—may goto their physician with information they have ob-tained from media reports and ask for particularmedications or other treatments. It has been esti-mated that one-third of prescriptions for new med-ications are now written at the request of thepatient ( 16).

The combination of these three factors-1) achanging medical field, 2) brief media reports onnew research findings that may not place the find-ings in context or make clear which individuals

are most likely to benefit from particular methodsof prevention or treatment, and 3) people who de-pend on media reports as a primary source ofhealth information--creates public informationproblems. The problems are not unique to osteo-porosis, but they must be addressed by anyonewho is interested in increasing public knowledgeabout the disease.

The growing use of the mass media to promoteprescription medications adds to these public in-formation problems. Traditionally, pharmaceuti-cal companies have promoted prescriptionmedications to physicians through direct mail-ings, personal visits by sales representatives, andadvertising in medical journals. In the past dec-


ade, the companies have begun promoting variouskinds of prescription medications directly to con-sumers, usually through the mass media ( 16,45).Sometimes, the companies use print or broadcastadvertisements, which have been allowed by theFood and Drug Administration (FDA) since 1985.Often, however, the companies arrange and payfor press conferences or other media events atwhich research findings or testimonials favorableto their products (or unfavorable to competingproducts) are presented.

Concerns have been expressed about the latteruses of the mass media to promote prescriptionmedications because the sponsorship of the in-format ion often is not clear, and consumers are un-likely to realize that what they see, hear, or readbased on these media events is at least in part anadvertisement ( 16,45). In the case of osteoporosis,these concerns apply equally to the use of the massmedia to promote nonprescription medications--e.g., calcium supplements—and dairy calcium.For these products, as well as prescription medica-tions, the information may be either true or false,but its sponsorship often is not clear, and consum-ers may not realize that the information comesfrom an organization whose ultimate objective isto sell a product.

Box 2 describes some of the important researchfindings that emerged between 1990 and 1993about etidronate, a medication proposed for theprevention and treatment of osteoporosis. Thepurpose of the box is not to evaluate the efficacy ofetidronate. Rather its purposes are to illustrate theimportant role of the media in informing the pub-lic about medications proposed for osteoporosisand to point out the kinds of problems that mayarise because of the way research findings arepresented, variation in media cover-age of differentfindings, and widespread dissemination of in-formation about medications that are available onthe market but not approved by the FDA for osteo-porosis.

Sodium fluoride is another medication forwhich similar problems have arisen. Sodium fluo-ride is known to increase bone density and hasbeen prescribed by some physicians for manyyears for their patients with osteoporosis. Like eti-dronate, it is available on the market but is not ap-proved by the FDA for the prevention or treatmentof osteoporosis. In 1990, the findings of a widelypublicized study showed a significant increase inbone density but no reduction in the rate of newspinal fractures and an increase in nonspinal frac-tures in women who took sodium fluoridecompared with women who did not ( 100). Thesefindings led some osteoporosis experts to con-clude that sodium fluoride should not be used forosteoporosis except for research purposes (48,53).

During a 1990 osteoporosis conference atwhich these negative research findings were dis-cussed, one physician asked the speaker what heshould say now to the patients for whom he hadbeen prescribing sodium fluoride. The speaker re-sponded that the physician should not have beenprescribing an unapproved medication.

In 1994, interim findings were published froma study that is using a lower dose and differentform of sodium fluoride. The interim findingsshow a lower rate of new spinal fractures in 48women who are receiving sodium fluoride,compared with 51 women who are not (92). Thesefindings were widely covered by the mass media,5

leading some osteoporosis experts to worry thatthere will be a surge in the use of sodium fluoridebefore the interim findings are confirmed in the re-maining years of the study or validated by otherresearchers.

Calcium is a third substance for which publicinformation problems have arisen. Dietary cal-cium and calcium supplements are widely recom-mended for the prevention and treatment ofosteoporosis, but recently published studies havehad contradictory findings about the relationship

.—i SW, for u~amplc. Lcarj. VcIt }’d 7imc.\, .Apr. I 5, I 994 (5 I ) dnd }$:/// .Slrccl .J()//r)l(//, Apr. I 5, I 994 ( 1 29),

-. .-


I

Etidronate IS a medication that has been considered for the prevention and treatment of osteoporosis for

many years It IS known to reduce bone loss and was approved by the Food and Drug Administration

(FDA) for treatment of Paget’s disease in 1977 and for two other conditions in 1979 and 1987. Etidronate

has not been approved by the FDA for the prevention or treatment of osteoporosis

On May 3, 1990, the New England Journal of Medicine published the results of a three-year, random-

ized, double-blind, placebo-controlled study conducted in Denmark which found that spinal bone density

was significantly Increased in 20 postmenopausal women who took etidronate compared with 20 post-

menopausal women who did not take etidronate (1 10). In the last two years of the study, the rate of new

spinal fractures was significantly lower for the women who took etidronate, but there was no significant

difference in the rate of new spinal fractures in the two groups over the full three-year period of the study.

The average age of the women in the study was 68 All the women had low bone density and at least one

but not more than four spinal fractures at the start of the study.

On July 12, 1990, the New England Journal of Medicine published the results of a second two-year,

randomized, double-blind, placebo-controlled study conducted at seven sites in the United States which

found that spinal bone density was significantly Increased in 195 postmenopausal women who took etidro-

nate compared with 183 postmenopausal women who did not take etidronate (131) In this study, however,

the women who took etidronate had half as many new spinal fractures as the women who did not take

etidronate (eight versus 17 new spinal fractures in the two groups, respectively) The average age of the

women in the study was 65. All the women had low bone density and at least one but not more than four

spinal fractures at the start of the study

On the day the results of the second study were published, at least 400 newspapers nationwide carried

stories about the study (25) In the following days and weeks, many magazines, newsletters, and other media

carried stories about the efficacy of etidronate in increasing bone density and reducing spinal fractures

Some women who read or heard these stories went to their doctor, some with a newspaper clipping in

hand, to get a prescription for etidronate (62,90) Since etidronate IS approved by the FDA for the treatment

of other conditions, it IS on the market, and prescriptions can be filled even though it IS not approved for

osteoporosis.

Etidronate causes Impaired bone mineralization when taken in high doses or for prolonged periods

(24,37) The recommended dose of etidronate for the treatment of Paget’s disease and the other conditions

for which it IS approved by the FDA IS higher than the dose used to treat osteoporosis in the two studies

described above Thus, some osteoporosis experts were concerned that etidronate would be prescribed in

too high a dose and for too long a period and result in impaired bone mineralization and reduced bone

strength (7,90)

On March 8, 1991, in a public meeting of the FDA’s Endocrinologic and Metabolic Drugs Advisory Com-

mittee, data from the U S study were presented, including data which showed that in the third year of the

study the women who were taking etidronate had twice as many new spinal fractures as the women who

were not taking etidronate (21 versus 10 new spinal fractures in the two groups, respectively) (125) Repre-

sentatives of the company that produces etidronate and some osteoporosis experts argued that the third -

year data should not be regarded as Important because the subjects who continued in the third year of the

study were self-selected, there were very few fractures overall, and the Identification of spinal fractures IS

problematic They argued that the increased Incidence of fractures in the third year of the study in women

who were taking etidronate should be regarded as an instance of spontaneous variation in fracture rates,

unrelated to the use of etidronate Nevertheless, a majority of the advisory committee voted that the data

presented to them did not provide substantial evidence for the efficacy of etidronate, and the FDA did not

approve the use of etidronate for the prevention or treatment of osteoporosis

(continued)—


To OTA’S knowledge, information about the greater number of new spinal fractures in the third year of

the study in women who were taking etidronate was not made known to the public in any way, although a

transcript of the advisory committee meeting is available from the FDA. Public information about osteopo-

rosis continues to describe etidronate as an investigational drug, Implying that FDA approval has not yet

been but probably will be obtained, and fails to note the FDA’s 1991 decision not to approve it or the rea-

sons for that decision.

OTA does not know how many women are taking etidronate for osteoporosis. Sales of etidronate in-

creased dramatically after July 1990 (1 1), and some osteoporosis experts believe that a very large number

of women are taking etidronate (33,94). Some osteoporosis experts have told OTA Informally that they are

concerned about widespread use of etidronate, particularly for middle-aged women who do not have low

bone mass or spinal fractures and are taking the drug for preventive purposes Osteoporosis experts con-

tinue to be concerned about whether women who are taking etidronate are taking an appropriate dose, and

some osteoporosis experts report seeing women m their clinical practice who have been taking too high a

dose of etidronate for prolonged periods (12,94). Since etidronate IS not approved by the FDA for osteopo-

rosis, the company that produces etidronate IS prohibited by FDA regulations from disseminating prescrib-

ing Information for the medication.

In December 1993, the American Journal of Medicine published the results of four years of the U S

study, including the final year when the study was no longer blinded (34) The study data show that the

Increase in bone density that occurred in the first two years of the study for the women who were taking

etidronate was maintained in the third and fourth years. The number of new spinal fractures in the third year

of the study IS not reported m the journal article but IS said by one of the researchers to be 14 new spinal

fractures in the women who were taking etidronate and 10 new spinal fractures in the women who were not

taking etidronate (130) (OTA does not know why these numbers differ from the numbers presented by the

company to the FDA advisory committee in 1991, ) The article concludes that there was no significant dif-

ference in the rate of new spinal fractures over the three-year blinded portion of the study between the

women who took etidronate and the women who did not take etidronate (34) A subgroup of women was

identified retrospectively for whom etidronate resulted in a significantly lower rate of new spinal fractures

these were women who had bone density below the mean for all the subjects and at least three spinal

fractures at the start of the study

In comparison with the media coverage of the July 1990 report, there was relatively Iittle coverage of the

1993 report As a result, the public IS probably not aware of the important conclusions of the study 1) the

lack of a significant difference in the rate of new spinal fractures in the study sample as a whole between

the women who took etidronate for three years and the women who did not, and 2) the existence of a sub-

group of women for whom etidronate did result in a significantly lower rate of new spinal fractures

SOURCE CXflce of Technology Assessment 1994 from sources clfed [n the text and Is-ted In the references section

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between calcium intake and osteoporosis.6 Mass ports do not distinguish between differentmedia reports of these findings have resulted in amounts of calcium intake or the effects of cal-confusion about the likely effects on bone density cium intake on bone density in people of differentof increased calcium intake. often, the media re- ages and gender.

6 See, lt~r c~amplc, AltJIa et al., 1994 (3); Daw s(m-Hughes ct al., 1990 ( 19); Kanls and Passmtm, 1989 (43), and Reid CI al., 1993 (98).


In June 1994, the National Institutes of Healthsponsored a consensus development conferenceto develop recommendations on optimal calciumintake for people of different ages and gender. Theresults of the conference will allow better target-ing of public information on this issue. Sincescientific research on the relationship betweencalcium intake and osteoporosis will continue,however, it is likely that public information prob-lems in this area will arise again in the future.

Some of the public information problems thathave arisen with respect to these three proposedmethods of prevention and treatment--etidro-nate, sodium fluoride, and calcium—have alsoarisen for other methods of prevention and treat-ment, including estrogen and calcitonin, the onlytwo prescription medications that are currentlyapproved by the FDA for osteoporosis.’ The samekinds of problems can be expected to arise in thefuture for new methods of prevention and treat-ment.

The ongoing development and testing of meth-ods of prevention and treatment for osteoporosisis clearly a necessary and positive process, despitethe uncertainty it engenders from time to timeabout the efficacy of particular methods. Like-wise, media coverage of new research findingsand people’s desire to inform themselves abouthealth issues are positive phenomena, despiteproblems they may cause. Efforts to increase pub-lic knowledge about osteoporosis must take placein the context of these phenomena, acknowledg-ing uncertainty and devising ways to respondconstructively to media coverage of new researchfindings and public demand for health informa-tion.

When confronted with a lack of public knowl-edge about a disease or condition and complaintsabout lack of information about the disease or

condition, public policy analysts often recom-mend the development of more public informa-tion materials and programs. The description inthis background paper of the existing public in-formation about osteoporosis is intended to showthat a large quantity of public information alreadyexists and to direct the attention of policy makersand others to problems in the dissemination andtargeting of the existing information, as well asproblems that may arise because of the way re-search findings are often reported in the mass me-dia, variation in media coverage of differentfindings, and the widespread dissemination of in-formation about medications that have not beenapproved by the FDA for osteoporosis.

In 1993, legislation was enacted requiring thedirector of the National Institutes of Health to pro-vide for the establishment of a resource center onosteoporosis and related bone disorders. The re-source center is intended to enhance knowledgeabout osteoporosis among health care profession-als, patients, and the public through the effectivedissemination of information (P.L. 103-43). InSeptember 1993, the National Institute of Arthri-tis and Musculoskeletal and Skin Diseases issueda request for applications from organizations in-terested in operating the resource center. The Insti-tute received several proposals and expects toaward a grant for the resource center by September1994 (69).

A resource center is likely to improve the disse-mination of information about osteoporosis. Theorganization selected to operate the resource cen-ter will have to develop ways of targeting informa-tion to different population groups. If the resourcecenter is to be fully effective, the organization thatoperates it will also have to develop ways of re-sponding constructively to media reports that pro-vide incomplete or contradictory information


about proposed methods of prevention and treat-ment. OTA believes, in addition, that as a publiclyfunded entity, the resource center should be re-quired to state explicitly the FDA approval statusof any medications mentioned in the public in-formation it produces and to cite the reasons forFDA decisions, if any, not to approve particularmedications.

Although not the immediate topic of this back-ground paper, it is clear that federal funding for re-search on methods of prevention and treatment forosteoporosis is an essential component of anylong-range effort to increase public knowledgeabout the disease. This research is needed so thatdefinitive information about the efficacy of vari-ous methods of prevention and treatment caneventually be made available to the public.

Lastly, it should be noted that the kinds of pub-lic information materials and programs discussedin this background paper are not the only waypeople learn about osteoporosis. The other impor-tant source of information about osteoporosis isphysicians and other health care professionals.Many health care professionals are not knowl-edgeable about osteoporosis. Thus, federal sup-port for professional education and training aboutosteoporosis is another essential component ofany long-range effort to increase public knowl-edge about the disease and ways to prevent andtreat it.

PUBLIC KNOWLEDGE ABOUTOSTEOPOROSISAnecdotal evidence indicates that most peoplehave heard of osteoporosis but are not knowledge-able about the disease. The findings of a 1991Gallup telephone survey commissioned by theNational Osteoporosis Foundation supports thisconclusion. A nationally representative sample ofwomen age 45 to 75 was interviewed. Three-fourths of the 750 women interviewed consideredthemselves familiar with osteoporosis: 40 percentrated themselves as very familiar, and 35 percentrated themselves as somewhat familiar (83).Nevertheless, only one-fourth of the surveyrespondents could identify any consequence of

osteoporosis: only 17 percent knew that osteopo-rosis can result in curvature of the spine; only 15percent knew that it can result in broken bones;and only 7 percent knew that it can result in heightloss. Among the 40 percent who considered them-selves very familiar with osteoporosis, one-fourthbelieved that there is no way to prevent or treat thedisease.

The Gallup telephone survey identified 29 per-cent of the 750 survey respondents as being at highrisk for osteoporosis, based on their answers toquestions about family history, menopause beforeage 45, surgical removal of the ovaries and uterus,slender build, lack of exercise, and smoking (83).Seventy percent of women at high risk for osteopo-rosis reported they had never talked to their doc-tor about osteoporosis because they did not seethe need or were not concerned about the disease.

A 1993 telephone survey conducted by LouisHarris and Associates for the CommonwealthFund’s Commission on Women’s Health foundthat 73 percent of a nationally representative sam-ple of 2,525 women age 18 and over consideredthemselves familiar with osteoporosis: 30 percentrated themselves as very familiar, and 43 pm-centrated themselves as somewhat familiar ( 14). Self-reported familiarity with osteoporosis varied withage: only 22 percent of the women age 18 to 45rated themselves as very familiar with osteoporo-sis, compared with 39 percent of the women age45 and over ( 14). Self-reported familiarity withosteoporosis also varied with educational level:only 18 percent of those with less than a highschool education rated themselves as very famil-iar with osteoporosis, compared with 25 percentof those with a high school education and 42 per-cent of those with a college education ( 14).

OTA is not aware of any data on knowledgeabout osteoporosis among men. The subjects forthe telephone survey conducted for the Common-wealth Fund’s Commission on Women’s Healthincluded 1,000 men, but they were not asked anyof the survey questions about osteoporosis ( 14).Considering the relatively small amount of publicinformation about osteoporosis in men, it is likely

Public Information About Osteoporosis: What’s Available, What’s Needed? I 11

that men are less knowledgeable than womenabout osteoporosis.

INFORMATION ABOUT OSTEOPOROSISCURRENTLY AVAILABLE TO THE PUBLICAs noted earlier, the public receives informationabout osteoporosis from sources that include themass media and commercial publishers; privateorganizations (i.e., the National OsteoporosisFoundation, other voluntary associations, healthcare organizations, dairy industry organizations,and pharmaceutical companies); and federal andstate government agencies. The following sec-tions describe the information typically availableto the public from each of these sources.

I Public Information About OsteoporosisAvailable from the Mass Media andCommercial Publishers

The mass media are an important source of publicinformation about health. According to a studyconducted in the late 1970s, the public ranks themass media second only to physicians and den-tists as a principal source of health information(138). The importance of the mass media as asource of health information has undoubtedly in-creased since then.

Commercial publishers are another source ofinformation about health. Commercial publishersproduce some of the health information dissemi-nated by the mass media, as well as informationused by hospitals. physicians, health educators,and others to inform patients and the public abouthealth issues.

Information Available from the Mass MediaTelevision, radio, newspapers, and magazinesprovide health information, Every day, adults andchildren alike receive countless health messagesfrom these sources.

The mass media often communicate health in-formation in news reports. Some television andradio stations broadcast regular health informa-tion programs, and some carry talk shows andpublic service announcements that convey health

information. Many newspapers have health col-umns or weekly health sections. Some magazinesfocus only or primarily on health-related topics,and many other magazines include articles onhealth topics.

The mass media reach far more people than oth-er sources of health information. A single televi-sion program or newspaper or magazine articlecan reach millions of people. Individuals who see,hear, or read a report about a particular method ofprevention or treatment may decide to pursue themethod on their own, or, if a prescription is need-ed. they may go to their physician to ask for theprescription. As noted earlier, one source cited inConsumerReports estimated that one-third of pre-scriptions for new medications are now written atthe request of the patient (16).

The information about osteoporosis availableto the public through the mass media often comesfrom other sources. The media generally adapt in-formation they receive, however, to emphasize as-pects of the information they believe will interesttheir respective audiences.

Scientists and health care professionals aresometimes critical of the way the mass mediaadapt and communicate health information. Somescientists and others complain about inaccurate ormisleading coverage of research findings. On theother hand, a survey of first-listed authors of ar-ticles published in 1989 in the Journal of theAmerican Medical Association and the New Eng-land Journal of Medicine found that 86 percent ofthose whose research had been reported by the me-dia believed the coverage was accurate (133).

Some scientists, health care professionals, andothers also complain about headlines that over-state or oversimplify research findings and aboutcuriosity-peaking captions and between-programcommercials intended to entice people to watch,listen, or read (71). In contrast, many journalistsbelieve that these techniques are effective in at-tracting and retaining people's attention and thatalthough some people are distracted or offendedby them, the techniques are useful in conveyinghealth information to the public (15).

As noted earlier, the mass media often presentinformation about research advances in osteopo-


rosis in brief news reports. Because of time orspace constraints, these reports often do not placethe findings in context or make clear which indi-viduals are likely to benefit from a particularmethod of prevention or treatment. As a result,people are unlikely to understand whether or howthe information applies to them.

With respect to health information generally,some commentators have noted a bias against re-porting “negative” studies, that is, studies thatfind no significant effect of the tested interven-tion. One study that compared the newspaper cov-erage of two articles from the same medicaljournal found that one article that described a posi-tive effect was reported in many more newspapersand at greater length than another article that de-scribed the lack of an effect (50). In response tothis finding, one journalist commented, “Selling astudy that shows ‘no results’ to an editor whodoesn’t understand science can sometimes be atough task” (86). Another journalist commented:

To those of us in the news business, [the]finding that newspapers are biased against nega-tive medical studies seems obvious and the rea-son for it quite simple. At any newspaper ormagazine published for the profit of its owners,the first and foremost criterion for decidingwhether to publish a story is whether it containsinformation that readers would like to know . . .Studies that find an effect usually are of more in-terest—and of more importance-to newspaperreaders than studies that find no effect.

Most American newspapers strive to publishfactual, accurate, and unbiased news stories, but. . . the newspaper editor who decides he has aresponsibility to give his readers certain in-formation, whether they want it or not, will seehis readers turning elsewhere for news and hewill soon discover he has no newspaper to beeditor of(5).

Also with respect to health information gener-ally, many commentators have noted a bias amongresearchers against submitting negative studiesfor publication (9,2 1,99). This bias and the mediabias against reporting negative studies mean thatthe public is general] y more likely to hear that var-

ious methods of prevention and treatment are ef-fective than that the methods are not effective.Both biases work to the advantage of pharma-ceutical companies that do not want publicity fornegative findings about the efficacy of their prod-ucts. Although not specific to osteoporosis, thesebiases are likely to influence the kinds of informa-tion the public receives about osteoporosis as wellas the information it receives about other diseasesand conditions.

TelevisionNational network television reaches 98 percent ofhouseholds, and cable television reaches 52 per-cent of households in the United States. Almosteveryone watches television daily, and manypeople watch for many hours a day. On average,children and elderly people watch more televisionthan other age groups; women watch more televi-sion than men; and some surveys show that mi-nority group persons and those in lowersocioeconomic groups watch more television thanother persons (20, 123).

National network and local television newsprograms sometimes report the results of osteopo-rosis research. These news reports are generallybrief, simple statements that last less than a min-ute. The scripts for television news reports areusually prepared by an in-house writer, but theymay be based on information from a press confer-ence, a press release, or a commercial news ser-vice. Pharmaceutical companies also submitinformation directly to television news officeswhich may or may not use the information in anews report.

Some local television stations have aired publicservice announcements about osteoporosis. Eachyear, the National Osteoporosis Foundation pre-pares an educational resource kit for National Os-teoporosis Prevention Week, a week in May that isdesignated by Congress and the President as atime to focus on osteoporosis. The educational re-source kit includes sample public service an-nouncements and suggest ions on how to cent’ince


local stations to air them during Prevention Weekand throughout the year. According to a NationalOsteoporosis Foundation official, many localtelevision stations broadcast the public service an-nouncements (44).

In 1991, the U.S. Administration on Aging andthe National Osteoporosis Foundation cospon-sored the development of public service an-nouncements narrated by Dr. Louis Sullivan,then-secretary of the U.S. Department of Healthand Human Services. The public service an-nouncements were sent to 250 television stationsacross the country: 71 of the stations aired at leastone of the public service announcements duringthe summer of 1991; nine of these stations were inthe "top 20” markets. An additional 60 stations re-ported that they were holding the public serviceannouncements for future use (93).

Several national network news magazine pro-grams and talk shows have broadcast information”

about osteoporosis. During the 1990 National Os-teoporosis Prevention Week, for example, ABC’s“Good Morning America” interviewed Dr. Wil-liam Peck, then-president of the National Osteo-porosis Foundation. During the interview, Dr.Peck suggested that people contact the NationalOsteoporosis Foundation for information aboutosteoporosis. As a result, the foundation received25,000 letters from people asking for informationabout the disease (25).

The national television networks offer a fewregular programs dedicated to health information.One such program is “Health Matters,” a 30-min-ute health information series that was beingbroadcast weekly on stations in 20 cities in 1991.The series. which was produced and distributed bya commercial publisher of health news programs,included some information about osteoporosis(103).

In comparison with the national networks,cable television has a large selection of channels,many of which specialize in specific types of pro-gramming targeted to selected audiences. TWO

cable television channels—The Discovery Chan-nel and the Lifetime Channel—specialize inhealth information programs. Some of the pro-grams are intended for general audiences, and oth-

er programs are intended primarily for physicians,although lay persons also watch them.

“Your Health” is a series of half-hour health in-formation programs for general audiences thatwas broadcast twice a day on the Discovery Chan-nel in 1991. The series included several segmentson osteoporosis, as well as segments on meno-pause and estrogen therapy (103). “Your Health”was produced by a commercial publisher of healthnews programs.

RadioAmerican households have an average of eight ra-dios, including kitchen, automobile, bedside, andportable radios (58). Nine out of 10 people saythey listen regularly to the radio, for an average oftwo hours a day. It is unclear, however, how manypeople actually pay attention to radio messagessince radios are frequently used as half-heardbackground during other activities (97).

Radio most often conveys osteoporosis in-formation as news reports or discussions on healthinformation programs. The news reports are gen-eral] y brief. The scripts for radio news reports maybe prepared by an in-house writer or a commercialnews service and may be based on informationfrom a press conference, press release, interview,or other source.

OTA is aware of several health informationprograms that have discussed osteoporosis. Oneexample is a program hosted by Dr. Dean Edenand syndicated to radio stations nationwide. Asecond example is a program hosted by Dr. GabeMirkin on WWRC-AM in Washington, DC.

NewspapersAbout 62 million people read one or more of the1,600 newspapers published daily in the UnitedStates (1 17). Men and women over age 50 aremost likely to read a newspaper regular] y. Marriedwomen under age 30 with children and womenover age 30 who are single parents are least likelyto read a newspaper (42).

Newspapers inform their readers about osteo-porosis in news reports, health columns, andweekly health sections. Newspaper reports aboutosteoporosis are likely to be more detailed than


those presented on television or radio, and theyprovide “tangible” information that can be read re-peatedly.

Newspapers throughout the country publishedclose to 1,000 news reports about osteoporosis in1990 (115). Newspaper journalists get informa-tion about osteoporosis from press conferences,press releases, interviews, and other sources.

Big newspapers often have specialized sciencewriters and a budget for research and investigativereporting about health issues. Small newspapers,which constitute the majority of newspapers in theUnited States, have few specialists and often relyon the wire services (113).

As noted earlier, on July 12, 1990, almost 400newspapers nationwide reported that a study inthe New England Journal of Medicine found eti-dronate effective for osteoporosis (see box 2). Thenewspapers used versions of the news story dis-tributed by ten wire services. Most newspapersused one of two versions of the story written by anAssociated Press science writer.

In February 1993, Ann Landers’ column,which is syndicated nationally and in Canada andEurope, discussed osteoporosis and gave the ad-dress of the National Osteoporosis Foundation.The column generated 100,000 letters to thefoundation from people asking for informationabout the disease (96).

MagazinesSome 10,000 different magazines are published inthe United States (58), and three out of 10 Ameri-cans say they read magazines daily (97). Maga-zines are published less frequently thannewspapers, so readers do not get news as quickly.Magazines that publish health information usual-ly take about three months to publish a news storyafter it has been distributed to the media ( 15). Thelonger lead time allows journalists to gather andpresent more detailed information, if they sochoose.

To find out what is being said about osteoporo-sis in popular consumer magazines, OTA con-tracted for a survey of such magazines. FromApril 1990 through March 1991, OTA’s contractorreviewed the contents of 62 magazines to identifyosteoporosis-related articles (15). All issues of51magazines, as well as some issues of 11 additionalmagazines, were reviewed.

Over the one-year period of the survey, 26 ofthe 62 magazines had no osteoporosis-related ar-ticles (15). Table A-1 in appendix A lists thesemagazines.

The remaining 36 magazines had one or moreosteoporosis-related articles. Table A-2 in appen-dix A lists these magazines with the month andtitle of each relevant article and the category andsubcategory of the article’s content. A total of 97articles are listed. OTA’s contractor used broadcriteria for identifying osteoporosis-related ar-ticles, and a few articles about vitamin D, exer-cise, and calcium are included even though theydid not specifically mention osteoporosis (15).

OTA’s contractor regularly surveys consumermagazines for articles in the broad categories ofnutrition, food, food marketing, and health policy.The 97 osteoporosis-related articles identifiedover the one-year period of the survey conductedfor OTA constituted 3 percent of all articles identi-fied by the contractor in this time period in thesebroad categories (15).

Of the 36 magazines that had one or more os-teoporosis-related articles, the magazine Longev-ity had the largest number-17, followed byPrevention with nine osteoporosis-related ar-ticles, New Woman with six articles, In Health andWoman ’s Day with five articles each, and Self withfour articles. The other magazines listed in tableA-2 had three or fewer osteoporosis-related ar-ticles in the one-year period of the survey (15).8

Magazines are generally categorized in termsof their content and/or target audience. The 11

8 News magazines were not included in the survey. These magazines have regular health columns, and OTA is aware of some i)steopmJsis-

related afiicles (see, for example, ,Newsueek, May 14, 1990 [87]).


magazines in the health category had the most ex-tensive coverage of osteoporosis, with a total of 47articles or an average of 4.3 osteoporosis-relatedarticles per magazine. Magazines that target the20- to 45-year-old audience had an average of 1.7osteoporosis-related articles per magazine. Maga-zines that target women over age 40 had an aver-age of l.3 osteoporosis-related articles permagazine. Relatively little attention was given toosteoporosis in magazines targeted primarily tomen. African Americans, older people, parents, orteenagers. Modern Maturity, a magazine targetedto people over age 50, had no osteoporosis-relatedarticles, even though many people in this agegroup have or are at risk of the disease (15).

About half of the 97 articles identified byOTA’s contractor were longer than one page.These articles are marked with an asterisk in tableA-2. Longer articles usually convey more in-formation and detail. On the other hand, journal-ists generally agree that shorter articles are read bymore people. Thus, consumers may have read andmay remember more about osteoporosis from theshorter articles (1 5).

Since magazine editors often weave severaltopics into a single article, content analysis is dif-ficult. Clearly, however, calcium was the mostpopular osteoporosis-related topic in the one-yearperiod of the survey. Twenty of the 97 osteoporo-sis-related articles discussed sources of calcium.In contrast to a few years earlier, the relative effi-cacy of dietary calcium versus calcium supple-ments was not a major topic. Instead, several ofthe articles discussed the issue of balancing one’sneed for calcium against increased health risksdue to the fat, cholesterol, and caloric content ofdairy products (15).

Eight articles discussed factors that affect cal-cium absorption, including the phosphate in so-das, the oxalate in certain green leafy vegetables.and the excessive use of antacids One articlenoted that absorption of calcium supplements isimproved by taking a smaller dose several times aday (15).

The importance of calcium intake to achievepeak bone mass was discussed in one article tar-geted to college students and in a research report.-

in Prevention. Peak bone mass was also men-tioned in two of the other articles identified in thesurvey ( 1 5).

Exercise was the second most popular osteopo-rosis-related topic in the period of the study. Elev-en of the 97 articles were about exercise. Four ofthe 11 articles focused on the negative effects ofexcessive exercise, i.e., amenorrhea and boneloss. Many articles about exercise that appeared inthe 62 magazines during the period of the surveydid not address osteoporosis ( 15).

Estrogen therapy was the topic of five of the 97articles. The articles discuss the role of estrogentherapy in decreasing one’s risk of osteoporosisand heart disease, as well as its possible role in in-creasing the risk of certain cancers. The othermedications discussed in one or more of the 97 ar-ticles were etidronate, calcitonin, sodium fluo-ride, progesterone, and human growth hormone( 15).

Four articles discussed the use of electricity tostimulate bone healing. Two of these articles sug-gested that electricity may eventually be used totreat osteoporosis (15).

Osteoporosis in men was discussed in three ar-ticles. Runner's World reported research done inPortland, Oregon, showing bone loss in 30- to87-year-old men: it recommended regular exer-cise and calcium-rich foods. Two other articlesdiscussed a study of osteoporosis in men age 21 to79 and recommended calcium (15).

During the time of the survey, many consumermagazines published articles about the lack of re-search on women health. Osteoporosis was men-tioned in two of these articles. Self published achart showing how the National Institutes ofHealth budget is allocated for 10 research areas;osteoporosis was ninth on the list (15).

Very few articles gave any source for additionalinformation about osteoporosis. Self publishedtoll-free telephone numbers for health informa-tion, but osteoporosis was not among the diseasesfor which a number was given ( 15).

Some of the articles identified by OTA’s con-tractor stressed self-help, whereas other articlesrecommended that people see a physician beforeinstituting a preventive or treatment strategy. Ar-


ticles about calcium seldom recommended seek-ing advice from any health professional. Articlesabout exercise that included exercise instructionsadvised people to consult their physician beforebeginning the regimen. Articles about medica-tions recommended medical supervision. Most ofthe articles about estrogen therapy advisedwomen to make the decision about treatment inconsultation with their physician (15).

Information Available fromCommercial PublishersCommercial publishers produce educational ma-terials to inform health care professionals and thepublic about a variety of health topics, includingosteoporosis. Some commercial publishers pro-duce health and medical news programming forthe mass media that has included messages aboutosteoporosis. Commercial publishers also pro-duce videotapes, audiotapes, and written materi-als used by physicians and other health educatorsto inform patients and the public about osteoporo-sis (32,102,1 03).

One videotape produced by a commercial pub-lisher features an 11 -minute segment about osteo-porosis that appeared on ABC Television’s“20/20” news magazine program (ChurchillFilms). Another videotape describes osteoporosisas a “biological time bomb set in youth to go offmuch later in life” and profiles a woman athleteprotecting herself against risk factors for osteopo-rosis (Films for the Humanities & Sciences). Athird videotape comes with a pamphlet that can beused to reinforce the video message or used sepa-rately (Milner-Fenwick).

Some commercial publishers produce factsheets and brochures about osteoporosis that aredistributed by health educators. Typically, thesepublications discuss osteoporosis risk factors,ways to reduce bone loss, and bone density test-ing. One brochure describes the warning signs ofosteoporosis, such as loss of height, curvature ofthe spine, dental problems, and back pain—topicsthat are not addressed in many osteoporosis publi-cations (Charming L. Bete Co., Inc.).

To ensure that the information they produce iscomplete and accurate, some commercial publish-ers have their publications reviewed before theyare published. One commercial publisher, for ex-ample, contracted with two osteoporosis expertsto advise its staff writers and artists who were de-veloping a booklet about osteoporosis. The book-let was then sent to 10 osteoporosis experts forreview, and their comments were incorporatedinto the final product. Booklets are updated peri-odically, and suggestions from readers are used torevise them (102).

I Public Information About OsteoporosisAvailable from Private Organizations

Public information about osteoporosis is avail-able from the National Osteoporosis Foundation,other voluntary associations, health care organiza-tions, dairy industry organizations, and pharma-ceutical companies. Each of these types oforganizations produces and distributes printed in-formation about osteoporosis-e. g., fact sheets,brochures, newsletters, articles, and reports.Many of these publications contain general in-formation about osteoporosis, risk factors for thedisease, and prevention strategies that focus onoverall good health, a calcium-rich diet, andweight-bearing exercise. Some publications dis-cuss the benefits and risks of various medicationsfor osteoporosis.

Most of the organizations distribute their osteo-porosis publications directly to the public, Typi-cally, the publications are distributed free or for anominal shipping and handling fee, but some or-ganizations charge for some of their publications.Many of the organizations permit and encourageother organizations to use and distribute their pub-lications.

Near] y all of the organizations not only producepublications but also conduct other types of activi-ties to educate the public about osteoporosis.Some of the organizations have staff memberswho regularly answer inquiries about osteoporo-sis and send out osteoporosis publications. Manyof the organizations conduct osteoporosis educa-


(ion programs for community groups, and someproduce audiotape and videotaped public in-formation materials as well as printed materials.

Information Available from the NationalOsteoporosis FoundationThe National Osteoporosis Foundation is a pri-vate, voluntary organization that came into exis-tence in 1986 to advocate for osteoporosisresearch and services, inform the public about thedisease, and conduct other activities to address theproblem of osteoporosis. As of 1994, it has a mail-ing list of 40,000 members and donors, includingscientists. health care professionals, business andcommunity groups, patients, and their families(96). In addition to its main office in Washington,DC, the National Osteoporosis Foundation has re-gional offices in Atlanta and Chicago, both estab-lished in 1993. and is in the process of establishingother regional offices.

The National Osteoporosis Foundation pro-duces and distributes public information materialsabout osteoporosis and functions as a national re-source center for anyone seeking informationabout the disease. OTA’s research indicates thatthe National Osteoporosis Foundation is currentlythe primary source of public information about os-teoporosis.

National Osteoporosis Prevention Week

A major focus of the National OsteoporosisFoundation’s public information activities is Na-tional Osteoporosis Prevention Week, usually theweek in May that begins on Mother’s Day. Asnoted earlier, Congress and the President havedesignated that week as a time to focus attentionon problems and solutions associated with osteo-porosis. The foundation views National Osteopo-rosis Prevention Week as a kickoff for itsyear-round activities (95).

National Osteoporosis Prevention Week:Educational Resource Kit: The National Osteopo-rosis Foundation produces an educational re-source kit for National Osteoporosis PreventionWeek. The materials in the kit are updated annual-ly to incorporate current scientific information

about the disease and ideas from previous Preven-tion Week experiences. The 1990 educational re-source kit contained the following materials:■

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■

■

■

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National Osteoporosis Prevention Week poster;suggested activities to promote awareness ofosteoporosis;background information about osteoporosis,including a consumer information booklet,“Boning Upon Osteoporosis,” an osteoporosisrisk factor questionnaire, a description of cur-rently accepted and investigational osteoporo-sis therapies, and an annotated bibliography ofarticles about osteoporosis in men;● ’Prevention Pointers” that are targeted to spe-cific audiences (preteens, teens, young adultwomen, mid-life women, older women, andmen of all ages);sample press releases and public service an-nouncements for use by local newspapers andbroadcast media;guidelines on how to advocate for state and fed-eral legislation supporting osteoporosis pre-vention and treatment; andinformation on managing the physical andemotional effects of osteoporosis and settingup an osteoporosis support group.

National Osteoporosis Prevention Week:“Partners in Prevention:” Each year, the NationalOsteoporosis Foundation enlists the help of gov-

ernment agencies, businesses, and other organiza-tions as “Partners in Prevention” to publicizeNational Osteoporosis Prevention Week. In 1990,the list of "Partners in Prevention” included 120organizations, classified as “Associate Partner,”“Contributing Partner,” “Supporting Partner” or“Sustaining Partner”. The comparable list for1994 included 300 organizations in the same fourcategories (96).

Associate Partners are nonprofit, nationalmembership associations and federal agencies.These organizations are expected to provide theiraffiliates at the state and local level with informa-tion about National Osteoporosis PreventionWeek and to encourage their members to presentosteoporosis education programs in their commu-nities. OTA telephoned 47 Associate Partners


listed in the 1990 directory and found that the ex-tent of their involvement in National OsteoporosisPrevention Week varied. Most of them includedinformation about Prevention Week in their news-letters and other mailings. Some distributed Na-tional Osteoporosis Foundation educationalresource kits to interested members. One dis-played osteoporosis posters and pamphlets in thelobby of its office building. One participated inmedia interviews about osteoporosis, and onesponsored television public service announce-ments.

Most of the Associate Partners told OTA theygenerally are not sources of public informationabout osteoporosis and usually refer people withquestions about osteoporosis to the National Os-teoporosis Foundation. A few of the AssociatePartners reported that they produce professionaland patient education packets, and a few reportedthat they operate osteoporosis information clear-inghouses.

Contributing, Supporting, and Sustaining Part-ners provide funding for the foundation educa-tional resource kit and other materials for NationalOsteoporosis Prevention Week. OTA telephoned47 Contributing Partners listed in the National Os-teoporosis Foundation’s 1990 directory, including35 health care organizations, five membership or-ganizations, two university research centers, andfive pharmaceutical or medical equipmentmanufacturing companies. As described later inthis background paper, OTA found that the 35health cm-e organizations were the type of Con-tributing Partners most likely to conduct osteopo-rosis public information activities.

As part of the 1990 National Osteoporosis Pre-vention Week, educational programs were con-ducted at schools, hospitals, clinics, health fairs,shopping malls, work sites. and women’s clubs.Some of the programs were conducted only dur-ing Prevention Week, and others were also pres-ented at other times.

The educational materials and programs devel -oped during the 1990 National Osteoporosis Pre-vention Week included the following:

●

●

m

a booklet with activities to encourage childrento eat calcium-rich dairy foods and to educatewomen who care for children about osteoporo-sis and its risk factors, developed by the ChildCare Association in Wichita, Kansas;a tee shirt with a logo reflecting the theme of the1990 Prevention Week campaign, “Genera-tions of Prevention,” designed by the Osteopo-rosis Awareness Resource Center in Spokane,Washington; anda luncheon with foods high in calcium to com-plement a presentation on osteoporosis andnutrition held at a local country club, organizedby the Mid Michigan Regional Medical Centerin Midland, Michigan.

National Resource CenterThroughout the year, the National OsteoporosisFoundation functions as a national resource cen-ter, responding to requests for information aboutosteoporosis from the general public, health careprofessionals, and community organizations. In1990, a National Osteoporosis Foundation offi-cial estimated that the organization was receiving200 to 300 telephone and mail inquiries a week(44). A sample of 26 letters provided to OTA bythe foundation included requests for informationfrom individuals who have osteoporosis and theirfamilies (see box 1 at the beginning of this back-ground paper). Six requests were for general in-formation about osteoporosis; 13 were forinformation about various treatments; two werefor information about prevention; two sought fi-nancial assistance to pay for bone density testingor medications: one wanted to verify a diagnosisof osteoporosis; one sought psychological coun-seling for a family member with osteoporosis; andone sought information about starting a supportgroup for people with osteoporosis and their fami-lies.

Since 1990, the number of requests for in-formation received by the National OsteoporosisFoundation has increased greatly. In 1992, the or-ganization initiated a toll-free information num-


ber. In the first two months after the toll-freenumber was initiated, 10,000 calls were received(95). In 1993, the foundation received 100,000telephone and mail requests for information, inaddition to the 100,000 letters received in re-sponse to the Ann Landers column mentioned ear-lier (96).

Nature of the National OsteoporosisFoundation’s Osteoporosis informationThe National Osteoporosis Foundation’s publica-tions and the information given to people whotelephone the organization are general in natureand essentially unbiased. The publications typi-cally provide an overview of osteoporosis and itsrisk factors and recommend regular exercise and abalanced, calcium-rich diet to prevent osteoporo-sis.

The National Osteoporosis Foundation doesnot recommend specific treatments or give medi-cal advice. Since 1991, it has included the follow-ing statement in some of its publications:

The National Osteoporosis Foundation doesnot advocate the general use of therapies not ap-proved by the Food and Drug Administration forthe prevention and treatment of osteoporosis.

Some of the National Osteoporosis Founda-tion’s publications are targeted to special popula-tions. One example is the "Prevention Pointers”mentioned earlier. Another example is the ● *Bone-wise” osteoporosis information kit for olderpeople produced by the foundation in 1991, withfunding from the U.S. Administration on Aging.The “-Bonewise” kit includes the following bro-chures and fact sheets:●

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m

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"The Older Person’s Guide to Osteoporosis,”an overview of the causes, prevention, andtreatment of osteoporosis;“Are You at Risk?” a risk assessment question-naire;“Facts About Osteoporosis, Arthritis, and Os-teoarthritis,” a description of each of these dis-eases;"Living with Osteoporosis,” a guide for peoplewith osteoporosis with tips for everyday living

and advice on how to avoid fall-related frac-tures;“Testing Your Bone Health,” a description ofthe available tests to measure bone density; anda directory of state units on aging and other statesources of information about programs and ser-vices for older people.

The consumer information booklet, “BoningUp on Osteoporosis,” mentioned earlier, was de-veloped in 1989 by the Osteoporosis Center at theUniversity of Connecticut’s Health Center incooperation with the National OsteoporosisFoundation (81 ) and revised in 1991 by the samegroup (82). The 60-page booklet discusses riskfactors for osteoporosis, methods of detecting os-teoporosis, and the role of calcium, vitamin D, ex-ercise, estrogen, calcitonin, and severalinvestigational medications in preventing andtreating osteoporosis. It also includes exercisesfor people who have osteoporosis.

In addition to the public information materialsalready noted, the National Osteoporosis Founda-tion publishes a quarterly newsletter, The Osteo-porosis Report, and produces fact sheets, charts,graphs, and videotapes and audiotapes that can beused for media presentations about osteoporosis.It has developed a booklet on medications that cancause bone loss, a pamphlet on talking with yourphysician about osteoporosis, and a slide show forcommunity presentations. In May 1994, thefoundation’s regional office in Chicago organizedcommunity forums on osteoporosis ats ix commu-nity hospitals (96).

The National Osteoporosis Foundation has co-sponsored numerous scientific conferences on os-teoporosis, as well as educational workshops forphysicians and other health care professionals. Italso publishes a physician’s resource manual onosteoporosis.

Information Available from OtherVoluntary AssociationsMany voluntary associations other than the Na-tional Osteoporosis Foundation also inform thepublic about osteoporosis, although sometimes


not on a sustained basis. Most of these associa-tions have a particular interest in women health.This section describes the public information acti-vities of some of the associations.

The Inland Empire Council of the Girl Scoutsof the U.S.A. serves girls scouts aged 5 to 17 yearsin Idaho and Washington State. In cooperationwith the National Osteoporosis Foundation, theWashington Dairy Association, and a local sup-port group for people with osteoporosis, the In-land Empire Council developed a “HealthyBones” badge to teach young girls about the im-portance of healthy lifestyles, a calcium-rich diet,and exercise to reduce the risk of osteoporosis inlater years. The educational materials compiledfor the badge program include a calcium guide, anaerobic exercise fact sheet, an osteoporosis bro-chure and risk factor checklist, a poster on the fourfood groups, and the Washington State DairyCouncil’s audiovisual catalogue. During the 1990National Osteoporosis Prevention Week, a localtelevision channel featured two girl scout troopsworking on the “’Healthy Bones” badge.

Future Homemakers of America, Inc. is a na-tional organization of about 300,000 young menand women who are studying or exploring careeropportunities in home economics. The organiza-tion has an educational program, “Student Body,”that is intended for use by teenagers in schools andother community groups to teach their peers to eatright, be fit, and feel good about themselves. Thenutrition education portion of the program, called● ’Dairy Does a Body Good,” focuses on the body’sneed for calcium to develop and maintain strongbones. It emphasizes dairy products as the pre-ferred source of calcium. The program includes avideotape, a discussion guide that mentions osteo-porosis, ideas for program activities, and a posterhandout with calcium-rich recipe suggestions.Funding for both the videotape and supplementa-ry materials was provided by the National DairyPromotion and Research Board. Other corporatesponsors of the program are Frito-Lay, Inc., Kraft,Inc., and PepsiCo Foundation, Inc.

The Women’s Association of the National Ru-ral Health Network is an affiliate of the National

Rural Electric Cooperatives Association. A fewyears ago, in connection with National Osteopo-rosis Prevention Week, the Women’s Associationconducted an education campaign that involveddistributing National Osteoporosis Foundationmaterials and a videotape on osteoporosis pro-duced by the Public Broadcasting Service to thecooperatives. The education campaign was notcontinued because of the cost of mailing theeducational materials to the cooperatives and be-cause, according to an association spokesperson,there have been no major changes in the informa-tion disseminated a few years ago (66).

Melpomene Institute for Women’s Health Re-search in St. Paul, Minnesota, is an organizationof individuals professionally trained in healthcare, physical education, and sports for girls andwomen. The institute researches and distributesinformation on issues such as body image. athleticamenorrhea, exercise and pregnancy, and osteo-porosis. The institute publishes the MelpomeneJournal, which has featured two articles about os-teoporosis: one article summarized currentknowledge about osteoporosis, and the other de-scribed a Melpomene osteoporosis study that ex-amined bone density, diet, activity levels. andother lifestyle characteristics of women aged 50 to80. The institute offers an information packet con-taining articles about osteoporosis and a videotapeon osteoporosis. The institute’s library has severalhundred articles about osteoporosis and willsearch their database for information about a spe-cific topic and provide callers with relevant ar-ticles for the price of copying (40).

The National Women’s Health Network inWashington, DC, publishes The Network News, aquarterly newsletter that has featured several ar-ticles about osteoporosis, including:

“Is Osteoporosis Inevitable?” which discussedrisk factors for osteoporosis and recommendedself-help measures to reduce one risk (March/April 1984);“Major Drug Manufacturer Funds Osteoporo-sis Public Education Campaign,” which criti-cized an osteoporosis public information

Public Information About Osteoporosis: What’s Available, What’s Needed? \ 21

campaign funded by Ayerst Laboratories-themanufacturers of an estrogen medication (May/June 1985); and

■ ‘osteoporosis Screening: Pro and Con,” whichfeatured opposing viewpoints about the use ofbone density testing to screen people at risk ofosteoporosis (January/February 1988).

The National Women’s Health Network alsopublishes a 40-page information packet on osteo-porosis. The net work maintains a bibliography onosteoporosis that is used to recommend specificarticles to callers. Callers are also referred to otherorganizations, such as the Women’s Midlife Re-source Center in San Francisco and the OlderWomen’s League in Washington, DC (36).

The National Women’s Health Resource Cen-ter, a nonprofit subsidiary of the Columbia Hospi-tal for Women in Washington, DC, was founded in1988 to increase awareness of women’s health is-sues through advocacy and educational programs.The center newsletter, National Women's HealthReport, provides information about a variety ofwomen health issues. In 1990, the NationalWomen’s Health Resource Center sponsored atwo-day workshop, “Forging a Women’s HealthResearch Agenda,” which resulted in consider-able media coverage of the participants’ concernsabout lack of sufficient research on womenhealth issues, including osteoporosis (85).

The Older Women’s League, a voluntaryassociation in Washington, DC, with chapters na-tionwide, includes information about osteoporo-sis in its newsletter and the materials it mails tocallers on request. The Older Women League iscurrently planning public information programson osteoporosis to be held in three locations in1994.

The American Association of Retired Persons(AARP) produces and disseminates public in-formation about osteoporosis through several ofits divisions, including its National ResourceCenter on Health Promotion and Aging, itsWomen’s Initiative, and its Women’s ActivitiesCommunications Division. AARP’s pamphlet se-ries, Timeless Pioneers, which is produced by the

Women Activities Communications Division.has, for example, included information about os-teoporosis in several recent issues.

The American Running and Fitness Associa-tion is a nonprofit, educational association thateducates the public about the benefits of exercise.The association publishes a newsletter that hasdiscussed the role of exercise in reducing the riskof osteoporosis.

In 1991, the American Medical Associationand the American Dental Association initiated a“Women’s Health Campaign” to inform womenabout 10 women’s health issues, including osteo-porosis. Good Housekeeping Magazine, one ofthe sponsors of the campaign, featured a supple-ment in its January 1991 issue that included ar-ticles and editorials about each of the 10 healthissues. The article on osteoporosis, entitled “Cal-cium: A Key to Preventing Osteoporosis,” dis-cussed calcium, weight-bearing exercise, healthylifestyles, and estrogen therapy as preventive ther-apies for osteoporosis. It recommended methodsof preventing falls and fractures, discussed thera-pies such as etidronate and vitamin D, and referredreaders to the National Osteoporosis Foundationfor additional information.

Other associations of health care professionalsalso produce public information about osteoporo-sis, in addition to professional education materialsand programs for their members. These profes-sional associations include the American Acade-my of Orthopedic Surgeons, the AmericanDietetic Association, the American College ofObstetricians and Gynecologists, and the NursesAssociation of the American College of Obstetri-cians and Gynecologists.

Lastly, the Food Marketing Institute, anassociation of food retailers and wholesalers, co-published with the National Institute of Arthritisand Musculoskeletal and Skin Diseases a bookletentitled "Boning Up on Osteoporosis.” A total of20,000 copies were distributed through 1,500 gro-cery stores nationwide. The publication explainsosteoporosis and its risk factors. discusses estro-gen therapy, calcium, vitamin D, and weight-bear-


ing exercise as ways to reduce the risk, andsuggests ways to prevent falls and fractures. Thepublication refers readers to the National Osteo-porosis Foundation for additional information.

Information Available from IndividualHealth Care OrganizationsSome hospitals, medical centers, and independentmedical practices that provide osteoporosis diag-nostic, preventive, and treatment services alsoconduct public information activities to increaseawareness of osteoporosis and market their ser-vices. OTA contacted the 35 health care organiza-tions that were Contributing Partners to the 1990National Osteoporosis Prevention Week to learnwhat they do to educate the public about osteopo-rosis. OTA does not know whether these healthcare organizations represent many other healthcare organizations in the United States or whetherthey are relatively unique with respect to their os-teoporosis public information activities.

Two of the 35 health care organizations thatwere Contributing Partners to the 1990 NationalOsteoporosis Prevention Week were independentmedical practices: a private metabolism and bonehealth practice run by an endocrinologist and awomen clinic run by four gynecologists. The en-docrinologist told OTA that he does not inform thepublic about osteoporosis but does produce sever-al osteoporosis fact sheets for his patients (10). Aspokesperson for the women’s clinic told OTAthat the clinic offers public osteoporosis seminarsat least four times a year. At the seminars, the clin-ic presents a film, “’Osteoporosis,” produced by acommercial publisher, and distributes the Nation-al Osteoporosis Foundation brochure “osteopo-rosis: A Woman’s Guide” and other educationalmaterials produced by the National Institute onAging, a pharmaceutical company, and the clinic.These publications are also displayed in the cliniclobby ( 106).

The remaining 33 health care organizationswere hospitals or medical centers. Of these 33 fa-cilities:

= two facilities—a women hospital and an os-teopathic medical center—that had offered spe-

cialized osteoporosis services in 1990 reportedthat they no longer did so;

● 11 facilities diagnosed osteoporosis as one oftheir general services but provided no special-ized osteoporosis services; and

~ 20 facilities provided specialized osteoporosisservices, including osteoporosis risk evalua-tions, information about the disease, and rec-ommendations on how to prevent bone loss.Some of these facilities also provided bonedensity testing.

Spokespersons for the two facilities that nolonger offered specialized osteoporosis servicescited the lack of third-party reimbursement forbone density testing and the lack of demand fortheir services as reasons for discontinuing the ser-vices. One facility noted a preference by mostpeople to consult their personal physician aboutosteoporosis, and the other facility cited a lack ofpublic awareness of osteoporosis. Neither of thefacilities had conducted public information activi-ties (41 ,70).

Of the 11 hospitals and medical centers thatdiagnosed osteoporosis as one of their general ser-vices, four conducted osteoporosis public in-formation programs during the 1990 NationalOsteoporosis Prevention Week, and one of thefour conducted osteoporosis public informationprograms at other times during the year. All fourfacilities had staff members who responded to in-quiries about osteoporosis and sent osteoporosispublications to people who requested them: twoused on] y National Osteoporosis Foundation pub-lications (32, 137); one used a combination of Na-tional Osteoporosis Foundation and NationalDairy Council publications ( 18); and one used anosteoporosis fact sheet produced by a commercialpublisher. One of the facilities had a display of os-teoporosis handouts from the National Osteopo-rosis Foundation and the National Dairy Councilin its lobby (18), and one had a newsletter (circula-tion 5,000) that has included articles about osteo-porosis (32).

Of the 20 facilities with specialized osteoporo-sis services, only one—an osteoporosis diagnos-tic and treatment center--did not conduct


osteoporosis public information programs, al-though it had done so initially to market its bonedensity testing services (91 ). Another facility—anorthopedic clinic associated with a sports medi-cine hospital--conducted its first osteoporosispublic information program during the 1990 Na-tional Osteoporosis Prevention Week (68). Theclinic used the National Osteoporosis Founda-tion educational resource kit to prepare articlesabout osteoporosis for a local newspaper, distrib-uted National Osteoporosis Foundation brochuresand fact sheets at a local shopping mall, and pre-sented an osteoporosis prevention program to agroup of teenage girls. In addition, a foundationwith which the sports medicine hospital isassociated published an article about calcium andan article about osteoporosis in its quarterly maga-zine (circulation, 20,000) (68).

The remaining 18 centers with specialized os-teoporosis services reported that they educate thepublic about osteoporosis throughout the year byactivities, such as:

● developing and distributing osteoporosis bro-chures and fact sheets;

■ publishing osteoporosis newsletters or healthpromotion newsletters that include articlesabout osteoporosis;

■ publishing information about osteoporosis innewspapers, popular magazines, professionaljournals, and books;

■ serving as community resource centers for in-formation, audiovisual materials, and publica-tions about osteoporosis; and

■ presenting osteoporosis information programsto community groups. such as women’s clubs,church groups, senior citizen groups, andworkplace and professional groups.

Box 3 describes the public information activitiesthat were being conducted in 1991 by one of thesecenters, the Osteoporosis Center at the Hospitalfor Special Surgery in New York City.

Seven of the 18 centers with specialized osteo-porosis services reported that they operate com-munity information and resource centers thatcollect journal articles and books about various

health issues, including osteoporosis (8,46.49,57,60,89, 134). One of the seven centers operates alending library that includes osteoporosis publica-tions and videotapes (57). All of the resource cen-ters respond to public inquiries about osteoporosisand mail osteoporosis publications to anyone whorequests them. One center maintains a list ofpeople who have inquired about osteoporosis andregularly mails them updated osteoporosis in-formation (89).

One of the 18 centers reported that it offers dietand exercise classes to women that include in-formation about the importance of good diet andregular exercise in preventing osteoporosis (59).Three centers reported that they offer exerciseclasses to people with osteoporosis that stressmuscle strengthening and behaviors to preventfalls and fractures (56,59,1 11). Two centers of-fered support groups for people with osteoporosisand their families (56, 105). One center used a mo-bile van to visit area neighborhoods at least twice amonth to distribute osteoporosis information andprovide free risk assessments ( 134).

In addition to the 35 health care organizationsthat were Contributing Partners to the 1990 Na-tional Osteoporosis Prevention Week, OTA isaware of several other health care organizationsthat have general health newsletters which haveincluded information about osteoporosis. TheMayo Clinic Health Letter has printed articles onvarious methods of prevention and treatment forosteoporosis, including calcium, sodium fluoride.estrogen, and etidronate, and in 1984 printed aspecial supplement on osteoporosis (67). TheHarvard Health Letter has also printed articles onmethods of prevention and treatment for osteopo-rosis and in 1991 printed a special supplement onosteoporosis (35).

The Osteoporosis Center at the University ofConnecticut’s Health Center has a newsletter, Os-teoporosis Center News, that focuses entirely onosteoporosis. The newsletter includes articlesabout methods of prevention and treatment for os-teoporosis, public information programs at the


In 1985, the Hospital for Special Surgery, a 192-bed hospital specializing in orthopedics and rheumatol-

ogy, established an Osteoporosis Center in conjunction with its Metabolic Bone Disease Service. The Os-

teoporosis Center provides comprehensive assessments, counseling, and referrals for people who are at

risk of or have been diagnosed as having osteoporosis. In 1991, the center served about 1,000 people,

most of whom were women in their 40s and 50s who wanted to know about their risk for osteoporosis and

methods of preventing and treating the disease (28).

In addition to patient assessments, counseling, and referrals, the Osteoporosis Center provides public

Information and professional education and training about osteoporosis and serves as a source of subjects

for osteoporosis research projects being conducted in the hospital (27). When it was established in 1985,

the center was one of the first, if not the first of its kind in the United States.

The public Information activities of the Osteoporosis Center include the development and distribution of

printed materials about osteoporosis, participation in community health fairs, sponsorship of public in-

formation programs about osteoporosis at the hospital, presentations about osteoporosis in community and

workplace settings, and media interviews about osteoporosis. In 1991, the center was distributing a variety

of printed materials about osteoporosis, including three 9- to 13-page pamphlets developed by the center,

“What IS Osteoporosis, “ “Nutrition and Osteoporosis, ” and “Exercise and Osteoporosis “ The center was

also distributing printed materials produced by the National Osteoporosis Foundation and other sources

The center staff noted the difficulty of keeping printed osteoporosis information up to date (28),

In cooperation with the hospital’s Community Education Department, the Osteoporosis Center has spon-

sored several public information programs on osteoporosis. One program on osteoporosis and menopause

drew an audience of 250 and had to be repeated a second time for people who could not be accommo-

dated in the first session Another program on osteoporosis and hip fracture drew an audience of 300

(101)From January 1990 through July 1991, staff of the Osteoporosis Center and physicians from the hospi-

tal’s Metabolic Bone Disease Service who work with the center made a total of 27 public presentations

about osteoporosis (28) Many of these presentations were to community groups, such as attendees at the

Senior Citizen Center at St Patrick’s Cathedral and the JASA Westside Senior Center, both m New York

center, and osteoporosis research at the center andelsewhere.

Information Available fromDairy Industry OrganizationsDairy industry organizations inform the publicabout osteoporosis primarily to promote the use ofdairy calcium. The principal dairy industry organ-izations involved in this effort are the NationalDairy Promotion and Research Board and theUnited Dairy Industry Association, which is com-posed of the American Dairy Association and theNational Dairy Council.

Much of the public information produced anddistributed by dairy industry organizations dis-cusses the importance of dairy products for goodhealth generally and does not mention osteoporo-sis. Some of the information mentions osteopo-rosis briefly, and some focuses entirely onosteoporosis.

In addition to their other public information ac-tivities, each of the dairy industry organizationshas staff members who answer telephone or writ-ten questions from the public, health care profes-sionals, and others, including questions aboutosteoporosis.


I

I

City, attendees at the Austin Self-Help Senior Center in Forest HiIIs, New York, and members of the Stam-

ford, Connecticut Chapter of the American Association of University Women

Staff of the Osteoporosis Center and physicians from the Metabolic Bone Disease Service also made

presentations about osteoporosis at worksites in New York City and elsewhere Presentations were made

for example, to employees at NBC, United Way, and the Hotel Worker’s Union in New York City Some Afri-

can American women came to these presentations to learn about their risk of osteoporosis The presence

of these women made the center staff painfully aware of the exclusive focus on white people in most osteo-

porosis information materials and the need for materials that Include African American and other persons

who are also at risk (28)

In 1990, Dr. Joseph Lane, medical director of the Metabolic and Bone Disease Service, was interviewed

about osteoporosis on Channel 5 News in New York City The Osteoporosis Center received 500 calls for

Information in the first two days following the Interview (28)

The hospitals Community Education Department has found that osteoporosis IS a popular topic for pub-

lic Information and community presentations When the department surveyed 75 local institutions to find

out what topics they wanted information about, osteoporosis was the second most frequently identified top-

ic, following back problems (101)

Until 1989, the hospitals public Information materials and programs were directed primarily to older

people Since then, however efforts have been made to reach younger people, including young women

who are at risk of osteoporosis because of amenorrhea caused by eating disorders and excessive exercise

(101)The Osteoporosis Center refers people to the National Osteoporosis Foundation and other organizations

for further information and in turn receives referrals from these organizations The center coordinator IS

aware of several other hospitals and medical centers nationwide that have osteoporosis centers and

wishes she had time to visit these other centers to learn more about their public, patient, and professional

education and training programs and patient assessment, counseling, and referral procedures (28)

SOURCE Off Ice of Technology Assessment 1994, from sources ctted n the text and Ihsted In the references section

IL-- — ——. .

National Dairy Promotion andResearch Board

The National Dairy Promotion and ResearchBoard is an advisory board of the U.S. Departmentof Agriculture. The board was established by Con-gress in 1983 to promote consumption of dairyproducts and thereby reduce milk surpluses. Theboard consists of 36 dairy producers appointed bythe Secretary of Agriculture to represent all dairyproducers in the United States. The board devel-ops and implements research, marketing, andeducation projects to increase the use of dairyproducts. To finance its activities, the board col-lects fees from dairy farmers based on the amountof milk they market. In fiscal year 1990, the

board’s assessment revenue and interest incometotaled $77 million (79).

In fiscal year 1990, the National Dairy Promo-tion and Research Board spent $9.5 million--about 12 percent of its budget—for productresearch to develop new dairy products and im-prove existing products and nutrition research toexamine the role of dairy nutrients–-especiallycalcium—in human health (79). Most of the re-mainder of the board annual budget was spent onadvertising to promote nonbrand dairy products.

The public information produced and distrib-uted by the National Dairy Promotion and Re-search Board focuses on nutrition and theimportance of dairy products for a balanced diet

26 I

and

Public information About Osteoporosis: What’s Available, What’s Needed?

good health. One television advertising cam-paign was produced by the board in response to astudy that revealed a substantial decline in milkconsumption after age 11 and a greater decline af-ter age 17. The advertising campaign used the slo-gan, “Milk. It Does a Body Good,” to persuadeyoung people that milk will help them grow up tobe healthy and physically fit. Another print adver-tising campaign was produced by the board toconvince women aged 25 to 54 that eating a vari-ety of dairy products is the preferred way to gettheir recommended daily calcium allowance (80).

Some of the public information produced anddistributed by the National Dairy Promotion andResearch Board focuses on osteoporosis. In 1988,for example, the board and the Cooperative Exten-sion Service of the U.S. Department of Agricul-ture jointly sponsored the “Calcium for the Primeof Your Life” program to inform people over age50 about the importance of dairy calcium to main-tain bone strength and reduce the risk of osteopo-rosis (78). A public relations firm produced anddistributed the program materials to CooperativeExtension Service agencies throughout the coun-try. The program was used by many other organ-izations, including AARP, the American RedCross, senior centers, retirement centers, alumnigroups, women’s clubs, garden clubs, civic clubs,adult education groups, churches, libraries, hospi-tals, health clubs, and corporate health programs(39).

Also in 1988, in conjunction with National Os-teoporosis Prevention Week, the board sponsoreda television public service announcement thatidentified osteoporosis as ● ’a crippling bone dis-ease that causes pain, disability, and in some casesmay lead to death.” The announcement counseledthat “. . . osteoporosis may be prevented withproper diet and exercise” and offered viewers afree brochure entitled, "Os-te-o-po-ro-sis.” Someversions of the announcement featured the nameand address of a local congressman from whomviewers could request the osteoporosis brochure.

The board also supports professional educationactivities. It sponsors scientific and consensus de-velopment meetings and pays for the publicationof reports from some of these meetings. For sever-

al years, the board sponsored advertisements inprofessional journals targeted to pediatricians,general and family practitioners, obstetricians/gy-necologists, and dietitians to inform them aboutthe nutritional benefits of dairy products. The ad-vertisements included an order form for free pa-tient education brochures, some of which discussosteoporosis. The advertisements were discontin-ued in 1992, in part because they were perceivedas having limited impact (73).

United Dairy Industry AssociationThe United Dairy Industry Association, estab-lished in 1971, coordinates activities and managesfunds for two organizations: the American DairyAssociation and the National Dairy Council. TheAmerican Dairy Association is a federation of 19regional and state dairy farmers’ associationscreated in 1940 to conduct advertising campaignsfor nonbrand dairy products. The associationsponsors television and radio commercials to pro-mote dairy products. These commercials often fo-cus on the benefits of dairy calcium to build andmaintain strong bones but generally do not men-tion osteoporosis specifically (11 4).

The National Dairy Council, established in1915, produces nutrition education materials andconducts nutrition education programs for healthprofessionals, educators, and the public. Thecouncil has a national office, 22 affiliated DairyCouncil units, and 68 area offices (73).

The nutrition education materials and pro-grams produced by the National Dairy Counciltarget a wide range of audiences, from young chil-dren to elderly people. The council’s 1992 “Nutri-tion Education Catalogue” lists a variety ofnutrition education materials for preschool andschool-aged children, including programs to beoffered by schools as part of classroom curriculaor by community youth groups, such as the 4-HClub, the Boys Scouts, the Girl Scouts, and theFuture Homemakers of America (77). These pro-grams emphasize calcium’s role in bone develop-ment, growth, and maintenance throughout life.The nutrition education materials for preschooland school-aged children that are currently offered


by the National Dairy Council include the follow-ing:●

■

■

❑

■

■

“Food . . . Early Choices,” for preschool andkindergarten students, includes a poster, book-let, puzzles, and food identification cards toteach students where and how we get our foods.‘“Food . . . Your Choice,” for elementary schoolstudents, begins with simple concepts such as“food helps me grow . . . gives me energy . . .keeps me healthy,” and progresses to detailedinstruction about food groups, nutrients, calo-ries, and the U.S. recommended daily allow-ance (RDA) guidelines.“Super You: A Guide to Getting Fit and StayingFit,” for 9- to 11-year-olds, offers a 24-page“Super You" booklet with games, activityideas, nutrition information, nutrition puzzles,snack recipes, and a “Superkids” poster."Smart Moves,” for junior and senior highschool students, includes a videotape, a poster,and a 16-page booklet that helps students re-cord and analyze their eating and exercise hab-its.“Food Power: A Coach’s Guide to ImprovingPerformance ," for coaches, particularly of ath-letes in grades 11 and 12, discusses trainingdiets, pre-competition meals, carbohydrateloading, and effects of dehydration on perfor-mance.“You: A Guide to Food, Exercise, and Nutri-tion” for young men and women, particularlythose in grades 11 and 12 (separate editions formen and women ), contains information aboutachieving and maintaining nutritional andphysical fitness (77).

The National Dairy Council also developsnutrition education programs for adults. One ofthese programs is a 15-minute videotape, "Osteo-porosis and You,” that discusses the incidence andsymptoms of osteoporosis; describes the effects ofsmoking, alcohol, and stress on bone health; andrecommends calcium-rich foods and regular exer-cise to build and maintain strong bones (77).

The National Dairy Council produces an8-page brochure, “Osteoporosis: Are You atRisk,” which is targeted to women and helps them

assess whether they are at risk for osteoporosis. ASpanish version of the brochure is also avail-able—the only Spanish-language public informa-tion about osteoporosis that OTA has seen. Otherbrochures produced by the National Dairy Coun-cil that discuss osteoporosis include "For MatureEaters Only: Guidelines for Good Nutrition,”“Every Woman Guide to Health and Nutrition,”and “’The All-American Guide to Calcium-RichFoods” (77).

The National Dairy Council’s public informa-tion materials and programs are updated periodi-cally, and some are discontinued, although oldermaterials and programs may remain in circulationuntil supplies are exhausted. Many of the materi-als and programs have received awards from orga-nizations such as the American DentalAssociation. the American Academy of FamilyPhysicians Foundation, the National EducationAssociation, and the American Federation ofTeachers (77).

The National Dairy Council sponsors a VisitingProfessor/Speakers Bureau program that providesexpert spokespersons on a variety of topics, in-cluding osteoporosis. The council also producesnutrition education programs and materials forhealth care professionals and educators. Some ofits area offices offer special nutrition educationprograms. In 1990. for example, the Dairy Coun-cil of Greater Metropolitan Washington, Inc. of-fered workshops for teachers and youth groupleaders to prepare (hem to present the council’sprograms ( 1 7).

The National Dairy Council also publishesscientific reports and summaries of scientific ar-ticles related to dairy products and calcium. A re-cent issue of Dairy Council Digest, the council'snewsletter that reviews nutrition research, sum-marized recent research on women health issues,including osteoporosis (76).

Information Available fromPharmaceutical CompaniesPharmaceutical companies inform the publicabout osteoporosis primarily to promote the use ofmedications to prevent and treat the disease. The

281 Public Information About Osteoporosis: What’s Available, What’s Needed?

companies may produce and distribute public in-formation materials and programs themselves orhire a public relations firm to conduct these activi-ties. Some pharmaceutical companies also pay forpublic information materials and programs thatare produced and distributed by other organiza-tions.

By increasing the availability of public in-formation about osteoporosis, pharmaceuticalcompanies can generate greater public awarenessand concern about the disease and thereby expandthe market for their products. Other methods ofexpanding the market for the products are limitedby FDA regulations that prohibit pharmaceuticalcompanies from engaging in the following prac-tices:■ promoting prescription medications that have

not been approved by FDA,~ promoting unapproved indications for ap-

proved medications, and■ providing promotional information that is

false, misleading, or selective (45).

FDA regulations require that promotional in-formation about an approved medication must in-clude a “brief summary” of its contraindicationsand side effects (45).

Greater public awareness and concern about os-teoporosis is likely to benefit all pharmaceuticalcompanies that have or are developing osteoporo-sis medications. The few companies that have ap-proved prescription medications for osteoporosisare likely to benefit immediately. Companies thatdo not yet have an approved medication for osteo-porosis are likely to benefit eventually from theimpact of greater public awareness and concernabout the disease. Companies that have a medica-tion that has been approved for other indicationsbut not osteoporosis may also benefit if peoplewho are concerned about osteoporosis go to theirphysician and the physician happens to knowabout the medication and prescribe it or if peoplelearn about the medication from the mass media oranother source and ask their physician to prescribeit. These benefits are likely to occur even if thecompanies” products are not mentioned specifi-cally in public information materials.

Each year, some pharmaceutical companiesprovide funding for the development of edu-cational materials for National Osteoporosis Pre-vention Week. In addition, many pharmaceuticalcompanies produce or pay for other public in-formation materials. In 1989, Wyeth-Ayerst Lab-oratories, which produces an estrogen medicationthat is approved for osteoporosis, published aneducational brochure, “What You Should KnowAbout Osteoporosis.” The brochure discussesmenopause-induced estrogen deficiency as acause of osteoporosis but does not mention anyspecific medication.

In 1991, Rhone-Poulenc Rorer Pharmaceuti-cals, Inc., which has a calcitonin medication thatis approved for osteoporosis, published twoeducational brochures. “Postmenopausal Osteo-porosis: Prevention” describes osteoporosis andits risk factors and mentions calcium, vitamin D,exercise, and estrogen therapy as ways to preventit. “Postmenopausal Osteoporosis: Treatment”describes osteoporosis, emphasizes the serious-ness of the disease, and discusses estrogen therapyand calcitonin as the two possible ways of haltingits progression. Neither of the brochures mentionsa specific medication.

Sandoz Pharmaceutical Corporation, whichhas an injectable calcitonin medication that is ap-proved for osteoporosis and a nasal calcitoninmedication that is not approved for osteoporosis,paid for the 1989 version and the 1991 revision of‘*Boning Up on Osteoporosis,” the informationalbooklet mentioned earlier that was developed bythe Osteoporosis Center at the University of Con-necticut’s Health Center in cooperation with theNational Osteoporosis Foundation. The 1989booklet notes that calcitonin is approved by theFDA for the treatment of osteoporosis but is onlyavailable at present by injection. It states that ‘*na-sal calcitonin is expected to be available in the fu-ture” (81). The 1991 booklet describes nasalcalcitonin as an investigational treatment that has● ’been shown to be effective over a two-year peri-od in preventing spinal bone loss in women im-mediately after menopause” (82).


In 1991, Norwich Eaton Pharmaceuticals, Inc.(now Procter and Gamble Pharmaceuticals),which produces etidronate, published a brochure,“Osteoporosis: Am I at Risk.” The brochure de-scribes osteoporosis and the role of calcium inbuilding and maintaining strong bones but itpoints out the calcium is “only part of the story.”The brochure includes a risk factor checklist andadvises people who find themselves at risk to con-sult with their physician. The brochure does notmention any specific medication.

Marion Merrell Dow, Inc., which manufacturesa nonprescription calcium supplement, publishes"Calcium Communique,” a newsletter that ismailed to anyone who requests it. A 1991 issue in-cludes articles about exercise, RDAs, and the ef-fects of caffeine and excessive dieting on thebody’s store of calcium (64). FDA regulationswith respect to the promotion of prescription med-ications do not apply to nonprescription medica-tions, and the newsletter explicitly promotes thecompany’s calcium supplement. The issue con-tains a testimonial that favorably compares thecompany’s calcium supplement to a generic cal-cium supplement. It also contains an article whichpoints out that although calcium-fortified orangejuice is a way of meeting one’s need for calcium,one would have to drink almost a quart of juice aday to provide the RDA for calcium. According tothe article, the same amount of calcium can be ob-tained from two tablets of the company’s calciumsupplement.

In addition to brochures. booklets, and newslet-ters, some pharmaceutical companies have spon-sored multifaceted publicity campaigns toincrease public awareness and knowledge aboutosteoporosis. In 1983, Ayerst Laboratories hired apublic relations firm to conduct a publicity cam-paign focused on reaching radio. television, andmagazine audiences with the message that osteo-porosis is a major women’s health problem forwhich there are remedies and that women at riskshould consult a physician. The campaign did notpromote a specific medication (38). Informationabout osteoporosis. its risk factors, and the role ofcalcium, vitamin D, weight-bearing exercise, andestrogen therapy to reduce the risk of osteoporosis is

appeared in magazines, such as Vogue, McCalls,Self, and Reader’s Digest (84). The campaign in-cluded a media tour of 10 cities by three osteopo-rosis experts to discuss osteoporosis in the contextof the conclusions of the 1984 NIH ConsensusDevelopment Conference on Osteoporosis: oneconclusion of the conference was that “estrogenreplacement therapy is highly effective for pre-venting osteoporosis in women” (127).

The public relations firm developed a pam-phlet, bearing Ayerst Laboratories’ name. that dis-cussed decreased estrogen production aftermenopause as a cause of rapid bone loss. The pam-phlet did not mention any specific medication.Ayerst Laboratories received over 100,000 re-quests for the pamphlet (38).

The public relations firm also arranged with theNurses Association of the American College ofObstetricians and Gynecologists (NAACOG) toconduct “nurse to health professional” and “nurseto public” osteoporosis seminars, The firm set upan advisory panel, consisting of osteoporosis ex-perts, NAACOG members, and a consumer repre-sentative, to develop the educational content forthe seminars. The seminars used a slide/script for-mat that discussed osteoporosis. its risk factors.and prevention strategies such as adequate cal-cium intake, weight-bearing exercise, and estro-gen therapy. Ayerst Laboratories was notidentified in the educational materials (84).

NAACOG initially presented the seminars tonurses and other health professionals in order tomotivate and prepare them to present the publicseminars. Thereafter, the slide/script materials forthe public seminars were distributed to NAACOGmembers and other interested health profession-als. Osteoporosis seminars were presented at adultday centers, churches, and women’s clubs. The to-tal number of seminars presented during the cam-paign is not known (6,38).

In 1990, the American Osteoporosis Alliance,an association of pharmaceutical companies thathad or were developing osteoporosis medications,hired a public relations firm to conduct a publicitycampaign to increase public awareness and under-standing about osteoporosis. The public relationsfirm launched the campaign by generating media


coverage of a 1990 conference “Research Ad-vances in Osteoporosis. ” The firm issued presskits, arranged press conferences and media inter-views with osteoporosis experts, and developed abackground videotape about osteoporosis. Thefirm also publicized the 1990 National Osteoporo-sis Prevention Week by inviting media reportersto attend a luncheon sponsored by the NationalOsteoporosis Foundation and issuing a press re-lease to reporters not in attendance. During 1990and the first half of 1991, the firm developed anddistributed to the media National OsteoporosisFoundation position statements on research find-ings. The position statements typically referredreaders to the foundation for additional in forma-tion.9

As noted at the beginning of this backgroundpaper, several recent commentaries have ex-pressed concerns about some of the ways pharma-ceutical companies use the mass media to promoteprescription medications directly to consumers( 16,45). It is said that in some instances, promo-tion of prescription medications through a medianews event is intended to evade FDA regulationsfor the promotion of prescription medications,i.e., regulations requiring that promotional activi-ties be truthful and balanced, regulations prohibit-ing pharmaceutical companies from promotingprescription medications that have not been ap-proved by the FDA, and regulations prohibitingpharmaceutical companies from promoting ap-proved medications for unapproved indications( 16,45). The FDA regulations do not apply unlessa promotional event is sponsored by the companythat manufactures the medications in question. Insome instances, however, the sponsorship of theseevents is unclear.

In addition to mounting publicity campaigns,some pharmaceutical companies use paid adver-tising to promote osteoporosis products to the

public.10 Thus far, most

been for nonprescriptionof the advertising hascalcium supplements.

One example is an advertisement that promoted acalcium supplement that “contains more calciumthan a half-quart of milk” (52). Another exampleis an advertisement for an antacid tablet that con-tains calcium. The advertisement showed news-paper headlines from the Wall Street Journal, USAToday, and the New York Times citing the benefitsof calcium for osteoporosis and said that two tab-lets of the antacid ● *can help prevent osteoporosis”’( 108). A third example is an advertisement that of-fered readers a free "Stand Up to Osteoporosis”booklet in return for completing a questionnaireindicating whether they use calcium supplementsand, if so, what brand they use (63). Half of the18-page booklet is devoted to a discussion of cal-cium and a favorable description of the company'scalcium supplement; the other half includes an os-teoporosis risk assessment and a discussion ofbone biology, osteoporosis, and the role of estro-gen and exercise in reducing the risk of osteoporo-sis.

Since 1985, the FDA has allowed direct adver-tising of approved prescription medications. In1991, Wyeth-Ayerst Laboratories conducted a3-month print advertising campaign for its estro-gen medication. The advertisement, which ap-peared in magazines, such as Better Homes and

Gardens, In Health, Lears, McCalls, Prevention,

and Readers’ Digest, featured a picture of fourmiddle-aged women and the message, "One out offour women over 50 will get osteoporosis." Theadvertisement advised women that the companyestrogen medication is the most effective way toprevent osteoporosis and urged readers to contactan “osteoporosis information center” by mail orby a toll-free telephone number for free informa-tion. Women who contacted the center received a


cover letter, an insert from the National Osteopo-rosis Foundation, and a brochure, “What YouShould Know About Estrogen Deficiency and Os-teoporosis.” The brochure briefly explains osteo-porosis in the context of menopause and decliningestrogen production but is essentially an adver-tisement for the estrogen medication. Both themagazine advertisement and the brochure in-cluded the ● ’brief summary” of contraindicationsand side effects that is required by the FDA. TheNational Osteoporosis Foundation’s insert out-lined the consequences of osteoporosis and urgedwomen over 50 to consult with their physicianabout steps to prevent osteoporosis. The cover let-ter included a certificate that offered a free exer-cise videotape to women who had the certificatesigned by a physician indicating that a consulta-tion had occurred. The certificate asked women toindicate whether their physician prescribed a med-ication and, if so, to specify the name of the prod-uct. The offer for the free exercise tape expiredMay 1, 1991. For proprietary reasons, the numberof women who contacted the osteoporosis in-formation center is unavailable. One in 10 womenwho requested information from the center re-turned the certificate with a physician’s signatureindicating that a consultation had occurred (38).

The appropriateness of direct-to-the-consumerprescription drug advertising has been vigorouslydebated over the last decade. Authorities familiarwith the issue describe the debate as follows:

Pharmaceutical companies argue that pre-scription drug advertising meets the increasingconsumer demand for health information, alertsconsumers to new treatments, encouragespeople to seek medical advice for conditionsthat would otherwise go untreated, and general-ly results in a more informed public. Others ar-gue that advertising prescription drugs toconsumers interferes with the physician-patientrelationship, confuses consumers, increases thecost of drugs, puts undue emphasis on pharma-cological treatments alternatives, pressuresphysicians to prescribe products, and results inunnecessary drug use (45).

In some instances, it may be easier for consumersto evaluate the information in an obvious adver-

tisement than information that is presented asnews but is actually promotional informationsponsored by a pharmaceutical company.

1 Public Information About OsteoporosisAvailable from Federal and StateGovernment Agencies

Many federal agencies conduct activities to in-form the public about osteoporosis. Most of theseagencies—i.e., the National Institutes of Health,the Food and Drug Administration, the Centersfor Disease Control and Prevention, the Office ofDisease Prevention and Health Promotion, the Of-fice of Women’s Health, and the Administrationon Aging—are part of the U.S. Department ofHealth and Human Services. In addition, the U.S.Department of Agriculture educates the publicabout osteoporosis through its Cooperative Ex-tension System. A description of these federal ac-tivities follows. Also described are the activitiesof several states that have conducted osteoporosispublic information campaigns.

Information Available from the NationalInstitutes of HealthThe National Institutes of Health (NIH) are part ofthe U.S. Department of Health and Human Ser-vices. Four of the institutes—the National Insti-tute of Arthritis and Musculoskeletal and SkinDiseases, the National Institute on Aging, the Na-tional Institute of Diabetes and Digestive andKidney Diseases, and the National Institute ofDental Research--conduct public information ac-tivities related to osteoporosis. The NIH Office ofResearch on Women’s Health also plays a role inincreasing public awareness of osteoporosis, pri-marily because of media coverage of issues per-taining to women’s health research.

National Institute of Arthritis andMusculoskeletal and Skin DiseasesThe National Institute of Arthritis and Musculo-skeletal and Skin Diseases (NIAMS) provides themajority of the federal government funding forosteoporosis research. NIAMS has sponsored nu-merous osteoporosis workshops and conferences,


including a 1987 workshop, “Research Directionsin Osteoporosis,” a 1990 conference, “ResearchAdvances in Osteoporosis,” a 1993 workshop,“Osteoporosis and Oral Bone Loss,” and a 1994symposium, “Osteoporosis: Research Advancesand Clinical Applications.” Although intendedprimarily for scientists and health care profession-als, these workshops and conferences often resultin media reports that inform the public about os-teoporosis.

NIAMS’ Office of Scientific and Health Com-munications and the National Arthritis and Mus-culoskeletal and Skin Disease InformationClearinghouse distribute information about os-teoporosis and conduct osteoporosis educationactivities for health care professionals and thepublic. As noted at the beginning of this back-ground paper, NIAMS expects to select an orga-nization to function as the congressionallymandated resource center on osteoporosis and re-lated bone disorders by September 1994. After theorganization is selected, NIAMS will coordinatethe functions of its information clearinghouse andthe new resource center to eliminate duplication ofeffort between the two entities (69).

As of May 1994, the National Arthritis andMusculoskeletal and Skin Disease InformationClearinghouse maintains a database of osteoporo-sis education materials and publishes annotatedbibliographies of osteoporosis literature for scien-tists, health care professionals, and the public. Italso compiles osteoporosis information packetscontaining review articles and commentaries.

NIAMS published a booklet, “Osteoporosis:Cause, Treatment, Prevention,” that has been dis-tributed to more than 100,000 people. As notedearlier, NIAMS also copublished a booklet, “Bon-ing Up on Osteoporosis,” with the Food Market-ing Institute. Both publications explainosteoporosis and its causes; discuss estrogen ther-apy, calcium, vitamin D, and weight-bearing exer-cise; and suggest ways to prevent falls andfractures. The former also reviews therapies, suchas calcitonin, sodium fluoride, vitamin D, anabol-ic steroids, and parathyroid hormone, and dis-cusses current research on osteoporosis. Both

publications refer the reader to the National Os-teoporosis Foundation for additional information.

NIAMS produced a videotape and booklet,“Osteoporosis,” based on a 1989 presentation byNIAMS’ director for the NIH "Medicine for theLayman” lecture series. NIAMS also preparesnews releases about recent research findings andthe results of scientific conferences.

The National Arthritis and Musculoskeletaland Skin Disease Information Clearinghouse andNIAMS' Office of Scientific and Health Commu-nications respond to written and telephone inqui-ries concerning osteoporosis. The clearinghousehandles general questions about osteoporosis, andthe Office of Scientific and Health Communica-tion handles questions requiring a more detailedor technical response (1 36). Between July 1 andSeptember 30, 1990, 92 people contacted theclearinghouse for general information about os-teoporosis: 30 people received NIAMS informa-tion packets, and 62 people received the booklet,“Osteoporosis: Cause, Treatment, and Preven-tion.” During the same interval, 38 people con-tacted the NIAMS Office of Scientific and HealthCommunication and received responses to theirspecific questions about osteoporosis, includingquestions about estrogen therapy, etidronate, cal-cium, calcitonin, vitamin D, and bone densitytesting. Both the clearinghouse and the Office ofScientific and Health Communication refer call-ers to the National Osteoporosis Foundation forfurther information.

National Institute on AgingThe National Institute on Aging (NIA) conductsand supports research related to the aging processand its physical, psychological, and social effectson older people-including research on osteopo-rosis, nutrition, exercise, hip fractures, and strate-gies for reducing falls and fractures. NIAcosponsored the 1987 workshop, “ResearchDirections in Osteoporosis,” the 1990 conference,“Research Advances in Osteoporosis,” and the1994 symposium, “Osteoporosis: Research Ad-vances and Clinical Applications.”


NIA provides the public with informationabout osteoporosis through its Public InformationOffice and a contract clearinghouse. The clearing-house functions as the “National Institute on Ag-ing In formation Center,” responding to requestsfor NIA publications. The publications, which areprepared by the Public Information Office, in-clude a 30-page booklet, “Menopause, ” that de-scribes osteoporosis and its risk factors, suggestscalcium, vitamin D, and exercise to prevent it. anddiscusses the benefits and risks of estrogen thera-py. The Public Information Office also publishesone-page fact sheets, called "Age Pages," that of-fer practical advice on health promotion and pre-ventive care for older people. One Age Page,‘-Osteoporosis: The Bone Thinner,” briefly de-scribes osteoporosis and its risk factors, recom-mends calcium, vitamin D, and weight-bearingexercise to prevent it, mentions estrogen therapy,sodium fluoride, calcium, and vitamin D as waysto slow or stop bone loss, and suggests ways totreat osteoporosis-related fractures. Other AgePages that mention osteoporosis include “ShouldYou Take Estrogen.” “Managing Menopause,”“Preventing Falls and Fractures,” "Nutrition: ALifelong Concern,” " Dietary Supplements: MoreIs Not Always Better, “ “Smoking: It’s Never TooLate to Stop,” and “Don’t Take It Easy—Exer-c i se. ”

NIA developed a pamphlet. “Women and Os-teoporosis,” that was published by Peoples DrugStores, Inc. as part of its "Living With Aging”pamphlet series and distributed by its 800 drugstores. The pamphlet contained a brief overviewof osteoporosis and its risk factors and urged read-ers to seek advice from their physician about cal-cium. vitamin D, estrogen therapy, and sodiumfluoride as possible means of prevention.

The NIA Public Information Office also pre-pares consensus conference statements, newsreleases, and articles about NIA-supported osteo-porosis research. These materials are distributedto the media, other federal government agencies,and the public.

The NIA Public Information Office responds towritten and telephone inquiries about osteoporo-

sis. The office keeps no formal count of the num-ber of requests it receives for osteoporosisinformation, but in 1991, an NIA spokespersonestimated it to be similar to the number receivedby NIAMS (75). If a request is for general in-formation, the office usually mails the inquirerNIA’s Age Page on osteoporosis and other generalmaterials. If the request is for specific informationabout a new development in osteoporosis preven-tion or treatment, the office includes professionaljournal articles on the topic. If the request is for in-formation about research being conducted byanother institute. the office refers the inquirer tothe appropriate institute. The office also refers in-quirers to the American College of Obstetriciansand Gynecologists for information about estrogentherapy and to the National Osteoporosis Founda-tion for information about osteoporosis diagnosisand treatment strategies (75).

In 1993, NIA jointly sponsored with AARP aworkshop on disseminating public informationabout menopause, in conjunction with an NIHconference, "Menopause: Current Knowledgeand Recommendations for Research." The work-shop focused on problems and strategies for thedissemination of public information about meno-pause. Its conclusions and recommendations ap-ply to information about the effects of menopauseon bone as well as other body tissues and organs(l).

National Institute of Diabetes andDigestive and Kidney DiseasesThe National Institute of Diabetes and Digestiveand Kidney Diseases (NIDDK) conducts and sup-ports research on endocrine and metabolic disor-ders that contribute to osteoporosis. NIDDKcosponsored the 1984 "National Institutes ofHealth Consensus Development Conference onOsteoporosis,” the 1987 workshop, "ResearchDirections in Osteoporosis,” the 1990 conference“’Research Advances in Osteoporosis,” and the1994 symposium, “Osteoporosis: Research Ad-vances and Clinical Application s.”

Since 1986, when NIAMS became a separateinstitute and ceased to function as a division of


NIDDK, most inquiries about osteoporosis go toNIAMS. As of early 1991, NIDDK’s InformationOffice was receiving only 25 to 30 osteoporosisinquiries a year. For questions related to endocrineor metabolic effects on bone, a NIDDK spokes-person will advise the caller. Otherwise, the calleris referred to NIAMS or the National Osteoporo-sis Foundation ( 107).

National Institute of Dental ResearchThe National Institute of Dental Research (NIDR)conducts and supports research on bone biologyand metabolic bone diseases that affect oral andfacial tissues. NIDR cosponsored the 1993 work-shop, “Osteoporosis and Oral Bone Loss,” and theI 994 symposium, “Osteoporosis: Research Ad-vances and Clinical Applications. ” As noted earli-er, these workshops and symposia are intendedprimarily for scientists and health care profession-als but mass media coverage of their findings mayincrease public awareness and knowledge aboutosteoporosis.

Office of Research on Women’s HealthThe NIH Office of Research on Women’s Healthwas established in 1990 to enhance research ondiseases and conditions that affect women, ensurethat women are included as subjects in clinical re-search, and increase career opportunities forwomen in scientific and clinical research (47).Providing public information about osteoporosisis not a primary function of the office, but massmedia coverage of its activities—particularly itsefforts to identify gaps in knowledge aboutwomen’s health and initiate and support researchto address the gaps—increases public awarenessof osteoporosis.

The Office of Research on Women’s Healthcollaborates with other offices and institutes atNIH on the “Women’s Health Initiative,” a15-year, three-part study that will eventually in-volve 40 to 45 research centers national] y and cost$625 million. The study focuses on the effects oflow-fat diets, calcium, vitamin D, and estrogenand progestin therapy on the incidence of cancer,cardiovascular disease, and osteoporotic fracturesin women.11 Mass media reports on this study arid

public presentations by staff of the Office of Re-search on Women’s Health about the study andother NIH-funded research on women’s health is-sues call attention to osteoporosis as a womenhealth issue and increase public awareness, if notknowledge, about the disease.

Information Available from theFood and Drug AdministrationAs part of its mandate to promote and protect thepublic health, the Food and Drug Administrationwithin the U.S. Department of Health and HumanServices produces osteoporosis information forhealth professionals and the public and conductsosteoporosis education programs. In 1983, theFDA initiated a “Women’s Health Initiative” tofocus attention on women’s health issues—in-cluding osteoporosis. In 1986, the agency spon-sored a "National Conference on Women’sHealth” that underscored osteoporosis as a publichealth problem and laid the groundwork for theagency’s 1987 “Special Topic Conference on Os-teoporosis.” The 1987 conference was intended toestablish a baseline of reliable information aboutosteoporosis and to outline key educational mes-sages about bone loss, bone density testing, nutri-tion, exercise, and other methods of preventionand treatment. Proceedings of the two conferences

I I ~e [hrcc pa~5 (Jfthc wonl~n’s Health Initiative are 1 ) a cllnlcal trial, involving 57,000 women ages 50 to 79, that will evaluate the ~ffe~:-

[i\eness of hwfat diets, calcium, vitamin D, and csm)gen and progestin therapy in preventing cardiovascular disease and osteopm)tic frac-

tures; 2 ) an (~bscrvatitmal c(mlponent, irrt (Jlving 100,000 postmenopausal women, that will detemline the risk factors for cancer, cardi(wascul:ir

disease, and (~stm)pmjtic fractures, ,and 3) a c(mm]un ity ]ntcrventi(m study that will evaluate various ways of improving health-related bchav -i(~rs in w{)n]cn iige 45 and over. Fractures w ill be tracked in subjects at all centers, and three of the research centers will ct~l lect infomlati(m ah)ut

sub}’cts’ txme density at the hip and ~pinc. B~mc density data wil I he ak ai Iable f(w atxmt 10,000 subjects.


were published as supplemental issues of PublicHealth Reports, the U.S. Public Health Service’smagazine for health care professionals and publichealth educators (1 18,120).

The FDA’s Office of Consumer Affairs handleswritten and phone requests for osteoporosis in-formation. The office keeps no formal count of thenumber of inquiries about osteoporosis it re-ceives, but a spokesperson estimated in 1991 thatthe number was considerably less than the 130 os-teoporosis inquiries received in a three-month pe-riod by NIAMS (31). Most requests were forgeneral information about osteoporosis. Requestsof a more technical nature—for example, side ef-fects of a medication used to treat osteoporosis--were referred to another FDA office that is expertin that area.

The FDA has consumer affairs officers locatedin field offices nationwide. The consumer affairsofficers conduct health education programsthroughout the year, and FDA publications thatdiscuss osteoporosis are distributed to people whoattend these programs (31).

In 1993, the FDA completed its evaluation ofthe relationship between calcium intake and os-teoporosis and issued regulations for allowablehealth claims, as required by the Nutrition Label-ing and Education Act of 1990 ( 124). The regula-tions allow the labels on food products thatcontain calcium to state that inadequate calciumintake in early life contributes to low peak bonemass and that adequate calcium intake may behelpful in reducing bone loss later in life. Accord-ing to the regulations, the labels must make clearthat calcium intake is not the only factor that af-fects the development of peak bone mass or theloss of bone with age; that the risk of osteoporosisvaries for different subgroups of the population;and that calcium intake above 200 percent of therecommended daily amount has no additionalbenefit for bone health (23, 124). To the extent thatfood manufacturers decide to make claims aboutthe relationship between calcium intake and os-teoporosis on their product labels, these labelingrequirements are likely to increase public aware-ness of osteoporosis.

The labeling requirements for claims about therelationship between calcium intake and osteopo-rosis are only one component of the FDA’s newfood labeling regulations. To help consumers un-derstand the food labels required by the new regu-lations, the FDA and several other public andprivate organizations have initiated a public in-formation campaign (88). The campaign will in-clude public service announcements. thedistribution of public education materials, and theestablishment of consumer hotlines for food label-ing information. This public information cam-paign is also likely to increase public awareness ofosteoporosis.

Lastly, the FDA is the federal agency that eval-uates prescription medications for safety and effi-cacy. The FDA division that evaluatesmedications for osteoporosis drugs has an adviso-ry group, the Endocrinologic and MetabolicDrugs Advisory Committee. As noted in box 2 atthe beginning of this background paper, in 1991the Endocrinologic and Metabolic Drugs Adviso-ry Committee reviewed the findings of the avail-able research on etidronate and recommended thatthe FDA not approve etidronate for osteoporosis.The FDA decided to follow the committee’s rec-ommendation.

The FDA generally does not notify the publicof its decisions to approve or not approve particu-lar medications, except in life-threatening situa-tions. To OTA’s knowledge, the FDA’s 1991decision not to approve etidronate for osteoporo-sis was not presented to the general public in anyway. The decision was reported in pharmaceuticalindustry newsletters and has been discussed atprofessional meetings and conferences. Anecdot-al evidence suggests. however, that some physi-cians who prescribe etidronate for osteoporosismay not be aware of the decision. As of May 1994.the company that manufacturers etidronate con-tinues to meet with the FDA, and it is possible thatnew evidence for the efficacy of the medicationcould result in its approval in the future. Giventhis context, however, OTA believes that theclaim, which has been made in some public fo-rums, that FDA “inaction and indecisiveness” are


holding up the approval of etidronate is mislead-ing. 12

In 1991, the FDA’s Endocrinologic and Meta-bolic Drugs Advisory Committee also reviewedthe findings of a five-year post-marketing study ofcalcitonin, a medication that was approved by theFDA in 1984forosteoporosis. The study found anincrease in bone density and a higher rate of newspinal fractures in subjects who received calcito-nin compared with subjects who did not receivecalcitonin (126). The company that produces cal-citonin and the Advisory Committee agreed thatthe study was so poorly conducted that its findingscould not be used to determine the efficacy of cal-citonin in reducing fracture rates. The AdvisoryCommittee voted unanimously to recommendthat the FDA revise the labeling requirements forcalcitonin to reflect the lack of evidence that it pre-vents fractures, and the FDA followed that recom-mendation. To OTA’s knowledge, the revisedlabeling requirements and the reasons for thechanged requirements were not presented to thegeneral public in any way, although, as in the caseof etidronate, the transcript of the advisory com-mittee meeting is available to the public, and thedecision was reported in pharmaceutical industrypublications. As of 1994, public informationabout osteoporosis continues to note correctly thatcalcitonin is an approved medication for osteopo-rosis but fails to point out the revised labeling re-quirements with respect to the lack of evidencethat calcitonin reduces fractures.

Information Available from the Office ofDisease Prevention and Health PromotionThe Office of Disease Prevention and HealthPromotion (ODPHP) within the U.S. Departmentof Health and Human Services coordinates federalhealth promotion activities. ODPHP has coordi-nated the development of several reports related toosteoporosis. One of these reports, The SurgeonGeneral’s Workshop: Health Promotion and Ag-ing, has a chapter on skeletal diseases and recom-

mends increased calcium intake for girls andyoung women (1 19). A second report, HealthyPeople 2000: National Health Promotion andDisease Prevention Objectives, includes recom-mendations to increase public awareness of osteo-porosis and ways to prevent the disease(121 ).

ODPHP operates a “National Health Informa-tion Center.” The center refers people who write orcall with questions about osteoporosis to other or-ganizations, including the National OsteoporosisFoundation, the National Institute on Aging, theNational Institute of Arthritis and Musculoskele-tal and Skin Diseases, the National Dairy Council,the American College of Obstetricians and Gy-necologists, and the National Women’s HealthNetwork (1 32).

In 1984, ODPHP initiated the "Healthy OlderPersons Campaign” to educate older people abouthealth practices that can reduce the risk of dis-abling illness. The campaign was part of a jointinitiative by the U.S. Department of Health andHuman Services and the Administration on Agingto encourage public and private organizations atthe national, state, and community levels to worktogether to provide health education to olderAmericans. The campaign focused on six areas ofdisease prevention: exercise, nutrition, safe use ofmedicine, smoking cessation, injury prevention,and preventive health services.

To implement the “Healthy Older PersonsCampaign,” ODPHP established contacts in eachstate and helped to develop coalitions in most ofthe states to implement the campaign. ODPHP de-veloped broadcast and print materials, includingpublic service announcements, posters, and factsheets about disease prevention for older peopleand provided samples of the materials to coalitionmembers along with technical assistance on howto use the materials. The ● ’Healthy Older PersonsCampaign” is regarded as a successful model of apublic health education effort to encourage a spe-cific group of people to adopt lifestyle habits thatdecrease the risk of chronic diseases. When the


campaign ended in 1988, 43 states had partici-pated in the campaign, and every state had a leadagency to direct health education programs forolder people (61 ).

The “Healthy Older Persons Campaign” didnot address specific diseases, although the preven-tion messages about nutrition, exercise, and injuryprevention are similar to those recommended toprevent osteoporosis. Some osteoporosis advo-cates point out, however, that since the campaigndid not link the prevention messages to specificdiseases, including osteoporosis, it probably didnot increase public awareness or knowledge aboutthe relationship between the recommended healthbehaviors and the diseases (95).

Information Available from theOffice on Women’s HealthThe Office on Women’s Health within the U.S.Department of Health and Human Services, Of-fice of the Assistant Secretary for Health, was es-tablished in 1991 to advise the assistant secretaryabout scientific, medical, legal, ethical, and policyissues relating to women’s health. The office is afocal point for the coordination of federal activi-ties with respect to women’s health. It was instru-mental in developing the 1991 PHS Action Planfor Women’s Health, which includes research andprevention activities for osteoporosis (128). Theoffice is also responsible for monitoring imple-mentation of the plan (65). The office has recent] ybegun to develop some public information materi-als about osteoporosis. In addition, as is true of theNIH Office of Research on Women Health, massmedia coverage of the activities of the Office onWomen’s Health and public presentations by itsstaff call attention to osteoporosis as a womenhealth issue and increase public awareness of thedisease.

h? formation Available from the Centers forDisease Control and PreventionThe Centers for Disease Control and Prevention(CDC) within the U.S. Department of Health andHuman Services develops national programs forthe prevention and control of communicable and

chronic diseases and implements them throughstate and local health departments. The CDC hasfunded osteoporosis-related research and is cur-rently conducting a study of the incidence of os-teoporosis-related fractures.

The CDC does not publish information aboutosteoporosis for the public. Its public informationactivities are informal and limited. In 1991, publicinquiries about osteoporosis were being answeredby the chief of the CDC’s Enzyme Research Cen-ter, Environmental Health, who reported respond-ing to five to 10 inquiries a year. In addition tousing the CDC’s resources to provide answers toquestions about osteoporosis. callers were usuallysent National Osteoporosis Foundation publica-tions and referred to the foundation’s GeorgiaChapter for additional information ( 109).

In 1991, the CDC provided funds to two states,Colorado and New Jersey, for three-year osteopo-rosis projects that include public informationcomponents. The project in Colorado involves thedevelopment of an inventory of medical special-ists, screening sites, support groups, and commu-nity agencies with programs for osteoporosisprevention and treatment ( 13). The project in NewJersey involves the provision of osteoporosiseducation programs for elderly people in threecounties, the development of an osteoporosis re-source manual, and the dissemination of osteopo-rosis information to the 116 local healthdepartments in the state (72).

Information Available from theAdministration on AgingThe Administration on Aging within the U.S. De-partment of Health and Human Services is the fed-eral agency responsible for promoting the healthand well-being of older Americans. The agencyadministers its policies and programs through anationwide network of state and community agen-cies, known as state units on aging and urea agen-cies on aging.

As previously mentioned, the Administrationon Aging provides funding for the National Re-source Center on Health Promotion and Aging,which is administered by AARP. The center is in-


tended to provide state units on aging and otherhealth care planners and health educators withtraining, technical assistance, information, andmaterials to implement health education pro-grams for older people. It maintains a clearing-house that distributes information packets ontopics such as nutrition, exercise, injury preven-tion, smoking, alcohol use, and safe use of medi-cations. The center also publishes a newsletter,Perspective in Health Promotion and Aging. Sev-eral issues of the newsletter, including one fo-cused on men’s health, have mentionedosteoporosis and referred readers to the NationalOsteoporosis Foundation for additional informa-tion. The center is primarily a resource for stateunits on aging and other aging network agencies,and people who call with inquiries about osteopo-rosis are generally referred to the National Osteo-porosis Foundation. The center also mails thesecallers a brochure and order form for National Os-teoporosis Foundation publications (74).

From 1987 through 1992, the Administrationon Aging provided funding to the National Osteo-porosis Foundation to develop educational mate-rials for National Osteoporosis Prevention Week.The Administration on Aging has also distributedthe foundation’s educational resource kits to stateunits on aging, which in turn may distribute themto area agencies on aging, senior centers, and othercommunity organizations ( 11 2).

In 1990, the Administration on Aging helped tofund public service announcements developed bythe National Osteoporosis Foundation. As notedearlier, the public service announcements featuredDr. Louis Sullivan, then-secretary of the U.S. De-partment of Health and Human Services, whourged people to take steps to prevent and treatosteoporosis and advised them to contact theNational Osteoporosis Foundation for the “Bone-wise” osteoporosis information kit, described ear-lier. The brochures and fact sheets in the"Bonewise” kit were also paid for by the Adminis-tration on Aging.

Area agencies on aging, as a rule, do not func-tion as public information agencies (22), but OTAis aware of several area agencies on aging thathave conducted osteoporosis education activities

either in conjunction with National OsteoporosisPrevention Week or as part of other health educa-tion campaigns. For example, in conjunction withthe 1990 National Osteoporosis Prevention Week,the Area XIV Area Agency on Aging in Creston,Iowa, distributed National Osteoporosis Founda-tion publications and arranged for speakers fromthe County Extension Service agency to speakabout osteoporosis and nutrition at senior nutri-tion sites.

In 1990, the Albuquerque Area Agency on Ag-ing, in Albuquerque, New Mexico, sponsored aseries of health education programs on a televi-sion network that serves New Mexico, Colorado,and parts of Arizona. The series included one pro-gram that featured an orthopedist who discussedosteoporosis and its prevention and treatment anda physical therapist who discussed ways to pre-vent falls and fractures. A second program fea-tured a physician who discussed the beneficialeffects of estrogen therapy for osteoporosis (30).

The New York City Department for the Aging,a department of municipal government and thelargest area agency on aging in the country, has of-fered information about osteoporosis to olderpeople through its health education program,● ’Project Stay Well.” The program trains older vol-unteers (average age 64) to conduct 12-sessioncourses about a variety of health-related topics, in-cluding osteoporosis. Mini-courses, includingone about osteoporosis, are offered for olderpeople who do not want to participate in a full12-session course. Educational materials from theNational Dairy Council and NIA’s Age Pages aredistributed to the course participants. The healtheducation programs are conducted at libraries, sen-ior housing complexes, and senior centers. As ofJanuary 1991, the program had 400 trained volun-teers who had presented “Stay Well” programs toover 3,000 older people at 82 sites in the city (26).

Information Available from theDepartment of AgricultureThe U.S. Department of Agriculture (USDA) edu-cates the public about osteoporosis through itsCooperative Extension System, a nationwide net-

Public information About Osteoporosis: What’s Available, What’s Needed? 139

work consisting of the federal Cooperative Exten-

sion Service and state and county CooperativeExtension Service agencies. Cooperative Exten-sion Service agencies in Color-ado, Indiana. Kan-sas. Maryland, Minnesota, Nevada, New Mexico,New York, North Carolina, West Virginia, andWisconsin have published fact sheets or brochuresabout osteoporosis ( 11 6). Because these materialsare often produced for nutrition education pro-grams, much of the information focuses on therole of nutrition, especially calcium, in reducingthe risk of osteoporosis. For example, the Univer-sity of Wisconsin/Madison Cooperative Exten-sion Service offers four brochures: "LinksBetween Nutrition and Osteoporosis,” “How ToGet Enough Calcium. “ “What To Do If You AreLactose Intolerant,” and “’Links Between Exces-sive Exercise, Weight Loss and Osteoporosis.”The last brochure discusses the increased risk ofosteoporosis due to excessive exercise and notesthat men. as well as women, are at risk of osteopo-rosis.

Information Available from StateOsteoporosis ProgramsAs previously mentioned, Colorado and NewJersey have CDC-funded projects to develop os-teoporosis public information programs. TheN e w J ersey project involves the provision of os-teoporosis education programs for elderly peopleat senior nutrition sites. Early experience withthese programs has shown that the presentationsmust be shorter than originally planned since theattendees generally do not want to remain long af-ter the meal (29). In the past year, the project hasalso worked with the Girl Scouts on an osteoporo-sis-related badge (29).

In 1986, Wisconsin conducted a one-year, pub-lic information campaign. “Osteoporosis: Stopthe Ladykiller. ” The campaign, developed by theWisconsin Division of Health, consisted of threeparts: a multimedia campaign to increase publicawareness; training sessions for physicians and al-lied health professionals; and training sessions forvolunteers to enable them to conduct educationaloutreach activities at the local level. The Wiscon-

sin Division of Health worked with a public rela-tions firm to develop public education messagesthat declared that osteoporosis is a “Hipbreaker,Humpmaker, Heartbreaker—Lady Killer” but canbe prevented. The messages were targeted towomen ages 18 to 65, physicians, pharmacists,nurses, dietitians, and health educators ( 135),

Public service announcements were distributedto 121 radio stations and 18 television stations. Afollowup survey indicated that 57 percent of theradio stations and 51 percent of the television sta-tions aired the announcements that advisedwomen to consult their physician for informationabout osteoporosis (135).

A consumer brochure was developed that dis-cussed osteoporosis and its risk factors. The bro-chure was distributed by volunteers from localpublic health agencies, health care organizations,the University of Wisconsin-Extension Service.the Dairy Council of Wisconsin, Inc., and otheragencies. Many of these agencies also conducted.other public information activities, such as dis-tributing posters, setting up information booths atshopping centers and grocery stores, speaking atcommunity forums, and participating in work-shops and health fairs ( 135).

Limited funding permitted the Wisconsin Divi-sion of Health to conduct the osteoporosis in-formation campaign for only one year. Thecampaign cost $400,000: the Division of Healthpaid $20.000 for printing brochures, training vol-unteers, and incidental expenses, and the remain-ing costs were funded by individuals, companies,and foundations (135).

CONCLUSIONAs described in this background paper, a largequantity of public information about osteoporosishas been and is being produced by the mass mediaand commercial publishers, the National Osteo-porosis Foundation and other voluntary associa-tions, individual health care organizations, dairyindustry organizations, pharmaceutical compa-nies, and federal and state government agencies.Despite the existence of this information, manypeople are not well informed about the disease.


Although some new and updated public informa-tion materials would be helpful, OTA does not be-lieve that the problem of lack of public knowledgeabout osteoporosis will be solved by the genera-tion of more pamphlets or videotapes.

Better ways of disseminating public informa-tion materials and programs are needed. The es-tablishment of a national resource center onosteoporosis and related bone disorders will un-doubtedly improve the dissemination of these ma-terials and programs. The resource center cancollect and catalogue the existing public informa-tion materials and programs, identify materialsand programs that are needed but not available,create the needed materials and programs, and re-spond to requests for information. Since healthcare professionals as well as lay persons will usethe resource center, it should collect and dissemi-nate reports and articles from the medical andscientific literature, as well as the kinds of publicinformation materials discussed in this back-ground paper.

The existence of an entity with primary respon-sibility for public information about osteoporosisshould help to reduce some of the duplication ofeffort that current] y occurs because public and pri -vate agencies and groups are not aware of theeducational materials that already exist. Once oneorganization is designated as the national resourcecenter. other agencies and groups will be able tocontact that organization to determine whether thematerials they need already exist, and, if the mate-rials do exist, they can spend their time and re-sources on dissemination and other functionsrather than on the development of new materials.

At present. the National Osteoporosis Founda-tion is functioning as a de facto national informa-tion clearinghouse for osteoporosis. Thefoundation considers itself a national osteoporosisresource center, and many other agencies andgroups that provide public information about os-teoporosis refer people to the National Osteoporo-sis Foundation for information they cannotprovide. Although the foundation is a relativelysmall organization, it is currently responding to alarge volume of calls and letters.

Several federal agencies also respond to re-quests for information about osteoporosis. Theseagencies receive many fewer requests than the Na-tional Osteoporosis Foundation for such informa-tion. The federal agencies also do less than theNational Osteoporosis Foundation to identifythemselves as sources of osteoporosis informa-tion. As a result, people who want informationabout osteoporosis may not know that the in-formation is available from these agencies.

Given the National Osteoporosis Foundation’scurrent functioning as a resource center on osteo-porosis, an obvious choice would be to designatethe foundation as the federally mandated nationalresource center. It is also possible that the selec-tion process now underway at the National Insti-tutes of Health will produce a credible alternativeto the foundation.

Most, if not all, federally mandated informa-tion clearinghouses have an advisory board tooversee their operation and advise them about thecontent of their educational materials and pro-grams. The resource center on osteoporosis andother bone diseases should have such a board. Theboard should include representatives of the differ-ent population groups affected by osteoporosisand other bone diseases and individuals with dif-ferent points of view about methods of preventionand treatment for these diseases.

In addition to better ways of disseminating ex-isting public information, some new educationalmaterials and programs are needed. As noted ear-lier, most existing public information about osteo-porosis focuses on prevention of bone loss and istargeted to middle-aged and older, white women.This background paper has described someimpressive educational materials and programsfor children and teenagers, most of which havebeen produced and/or paid for by dairy industryorganizations. In contrast, OTA has found verylittle public information about osteoporosis formen and ethnic minority persons. Although menand some ethnic minority persons are less likelythan white women to have osteoporosis, no one isimmune, and educational materials and programsdesigned for these persons should be available.


Given the increasing attention to women’s healthissues and the inclusion of osteoporosis as awomen’s health issue, the availability of educa-tional materials and programs about osteoporosisin men is particularly important. More education-al materials and programs are also needed forpeople who already have osteoporosis, particular-ly older people who are most likely to have the dis-ease and to need information about how to avoidfalls and fractures and how to cope with the dis-ability and pain often associated with it.

Public education materials and programs thatare designed for certain types of people are onlyhelpful if they get to those people. The perceptionthat the existing public information about osteo-porosis is confusing may in part reflect the factthat some people are exposed to educational mate-rials and programs designed for other types ofpeople whose situations and information needsare different. The resource center can help to solvethis problem because individuals who contact theresource center will be able to describe their par-ticular situations and receive materials appropri-ate for their needs.

Ideally. public information about osteoporosiswould convey a simple, accurate message aboutwhat different types of people can do to preventand treat the disease. Such a message cannot bedeveloped at present because of the current uncer-tainty about the efficacy of many of the proposedmethods of prevention and treatment. Now and inthe near future, most simple messages about theprevention and treatment of osteoporosis are like-ly to be incorrect, and conversely the correct mes-sage is likely to be complex.

OTA believes that the public would benefitfrom educational materials and programs thatconvey more of this sense of uncertainty than isconveyed by the materials and programs OTA hasseen. People need to understand that simple, de-finitive answers about many aspects of the preven-tion and treatment of osteoporosis are not yetavailable, and that ongoing research is likely to re-sult in findings that contradict some current ideasabout the efficacy of various methods of preven-tion and treatment.

Many of the educational materials and pro-grams described in this background paper list in-vestigational medications as possible methods ofprevention and treatment for osteoporosis withoutpointing out that these medications have not beenapproved for osteoporosis by the FDA. Other ma-terials and programs point out that the medica-tions have not been approved for osteoporosis butgive the misleading impression that the medica-tions are in the pipeline for FDA approval and thatit is only a matter of time before they will be ap-proved. This has not been the case thus far for ei-ther etidronate or sodium fluoride. Both of thesemedications are available on the market becausethey are approved for other indications, and manyindividuals have taken and continue to take them.Some and perhaps many of these individualsprobably are not aware of the FDA approval statusof the medications, or more particularly. the rea-sons for the FDA’s decisions thus far not to ap-prove the medications. OTA believes that publiceducation materials and programs that discuss in-vestigational medications should inform peopleabout the approval status of the medications andthe reasons for FDA decisions, if any, not to ap-prove the medications. Certainly educational ma-terials and programs produced or disseminated bya publicly funded resource center should includcthis information.

Most of the educational materials and pro-grams described in this background paper focuson] y on what works, or is believed to work, to pre-vent or treat osteoporosis. For people who are in-terested in prevention and treatment, informationabout what does not work is just as important asinformation about what does work, and theyshould have access to both types of information.OTA has seen some articles in consumer maga-zines that describe as effective substances forwhich there is no scientific evidence of efficacy.More importantly, however, most of the public in-formation materials discussed in this backgroundpaper imply or state explicitly that interventions,such as increased calcium intake and exercise.prevent osteoporosis. Although there are somepeople for whom this message may be correct,


there are other people for whom it is almost cer-tainly incorrect. The latter may benefit in manyother ways from increased calcium intake andexercise but are unlikely to be full y protected fromosteoporosis. OTA believes that public educationmaterials and programs should inform peopleabout what is not likely to work as well as what islikely to work for different subgroups of thepopulation.

Lastly, it is important to keep in mind that pub-lic information is only one way people learn aboutosteoporosis, and improved public information ison] y one component of an effective system to pre-vent and treat the disease. Aside from the varioussources of public information discussed in this

background paper, the most likely other source ofinformation about osteoporosis is physicians andother health care professionals. Some people firstlearn about osteoporosis from their physician oranother health care professional. Others learnabout osteoporosis from another source and thengo to their physician or another health care profes-sional for further information and help in devisinga plan to prevent or treat the disease. Many healthcare professionals are not knowledgeable aboutosteoporosis, and improved professional educa-tion and training is another important componentof an effective system to prevent and treat thedisease.

Appendix A:Coverage of

Osteoporosis inConsumerMagazines A

]43


For this background paper on public informa-tion about osteoporosis, the Office of TechnologyAssessment (OTA) contracted with ConsumerChoice Unlimited, Inc., for a survey to determinewhat was being said about osteoporosis in con-sumer magazines and to whom the informationwas targeted. Consumer Choice Unlimited re-viewed the contents of 62 consumer magazinesfrom April 1990 through March 1991. Table A-1lists the 26 magazines that included no osteoporo-sis-related articles in the one-year period of thestudy. The remaining 36 magazines included a to-tal of 97 osteoporosis-related articles; table A-2lists these magazines with the month and title ofeach relevant article and the category and subcate-gory of the article’s content. As noted earlier, Con-sumer Choice Unlimited used broad criteria foridentifying osteoporosis-related articles, and afew articles about vitamin D, exercises, and cal-cium are included even though they did not specif-ically mention osteoporosis.

The full report of the survey, ‘*Review andAnalysis of Consumer Magazine Articles Relatedto Osteoporosis,“ is available from the NationalTechnical Information Service, U.S. Departmentof Commerce, 5285 Port Royal Road, Spring-field, VA 22161; telephone (703) 487-4650; rushorders 1 (800) 553-NTIS; publication no. PB 94-188042.

Baby Talk

Canadian Consumer

Child

Eating Well

Ebony

Essence

First for Women

Food & Wine

Go/den Years

Mature Outlook

Men's Fitness

Mirabella

Modern Maturity

Nutrition Action

Parenting

Parents

Sassy

Savvy

Seventeen

Southern Living

The A/antic

USDA Food News

Woman

Women’s Sports/Fitness

Working Woman

YM

Child

Consumer

Child

Health

Of color, general

Of color, women

General

Gourmet

Senior

Senior

Men

Over 40

Senior

Consumer

Child

Child

Teen

Teen

Teen

General

Literary

Government

General

Health

General

Teen

———————

SOURCE Consumer Choices Unllmited, Inc “Review and Analysts ofConsumer Magazne Articles Related to Osteoporosis, ” contract reportprepared for the Off Ice of Technology Assessment, U S CongressMarch 1991

Magazine Month Title—— . .

American Health

American Health

American Health

Beauty

Better Homes & Gardens

Better Homes & Gardens

Black Elegance

Chatelaine

Chatelaine

Consumer Reports

Cooking Light

Cooking Light

Cosmopolitan

Cosmopolitan

Family Circle

FDA Consumer

FDA Consumer

Gentlemens Quarter/y

G/amour

Good Housekeeping

Good Housekeeping

Good Housekeeping

November

October

March

April

June

July

March

November

September

November

March/April

January

November

September

March

November

October

March

June

September

February

October

● The Lead-Calcium Time Bomb

● Bone Experts Make Headlines

*Which Supplements Should You Take?

Soda Addiction and Bone Fractures

Soda Pop and Exercise

*For Safer Hips (Avoid Long-Half-Life)

*Give Young Teeth a Good Start

*Benefits and Risks of Hormone Therapy

*How To Fight Osteoporosis

*Process American Slices (chart omits calcium)

Variety Milks

*Top 12 for Calcium

*Changing Nutrition Needs of Women

Low-Fat Yogurt Low-Cal Calcium

Brittle Bones

*Estrogens

Vitamin D Fact Sheet

Bone Up

Chocolate Milk for Lactose Intolerance

The Truth About Spinach

*Calcium A Key to Preventing Osteoporosis

*Cram for Calcium

Major category

Other diseases

Prevention—drug

Sources

Absorption

Absorption

Prevention

Sources

Estrogen

Treatment—drug

Sources

Sources

Sources

Prevent Ion

Sources

Other diseases

Estrogen

Vitamin D

Men

Other diseases

Absorption

Overview

Peak bone mass

Subcategory

Lead toxicity

Sodium fluoride cal-cium etidronate

Supplements

Phosphates in soda

Phosphates in soda

Tranquilizers

Dietary

Competing risks

Sodium fluoride

Dairy

Dairy

Dietary—food chart

Multiapproach

Dairy

Amenorrhea

Benefit/risk

Omits osteoporosis

Australia research

Lactose Intolerance

Oxalate

General/broad

College(continued)

o0C/3

g

-uosCn- .u)

Magazine

Harper’s Bazaar

Health

In Health

In Health

In Health

In Health

In Health

Ladies Home Journal

Ladies Home Journal

Ladies Home Journal

Lear's

Lear’s

Lear’s

Longevity

Longevity

Longevity

Longevity

Longevity

Longevity

Longevity

Longevity

Longevity

Longevity

Longevity

Longevity

Longevity

Month

January

July/August

May/June

January/February

September/October

March/April

May/June

October

November

March

September

March

February

February

April

July

August

July

October

November

July

July

December

May1, ,1, #tiuly

January

Title

*Bone Up on Diet

Kale for Calcium

Tracking Women’s Bone Loss

*The Calcium Advantage

Ballerina Bones

*A Jolt for Bone Loss (electric)

Antacids for Calcium?

*HGH: Drug for the Decade?

● The Take-Charge Patient

● The Calcium Bank Account

Calcium Supplements for UrinaryTract Infections

Early Bone Loss

Old Drug/New Tricks

Virtue That Could Backfire

The Strong-Bone Test

*Bone of Contention (letter to the editor)

(Congressional) BiIIs to Prevent Osteoporosis

The New Age-disease link

*Human Growth-Hormone Reduces Body Fat

The Calcium Connection

Cooling Hot Flashes

How a 50 y.o. Female Bone Doctor Builds Bone

Never Too Late To Take Calcium

Nasal Spray To Prevent Osteoporosis

A Drug , To Prevent Fractured Backs

‘Recharging Bones

Major category

Menopause

Absorption

Exercise

Menopause

Risks

Treatment

Sources

Other diseases

Estrogen

Sources

Other diseases

Estrogen

Treatment-drug

Absorption

Diagnosis

Diagnosis

Legislation

Other diseases

Other diseases

Other diseases

Estrogen

Menopause

Menopause

Prevent Ion-drug

Prevention--drug

Treatment

Magazine

Longevity

Longevity

Longevity

Mademoiselle

Mature Health

Mature Health

McCall's

McCall's

Men's Health

Moxie

New Woman

New Woman

New Woman

New Woman

New Woman

New Woman

Prevention

Prevention

Prevention

Prevention

Prevention

Prevention

Prevention

Prevention

Prevention

Month..——

June

March

October

June

April

April

November

February

January

September

October

October

March

March

March

March

December

July

December

January

October

August

February

March

July

Title

Vitamin D Cocktail

Rub-on Bone Builder

Skim Milk’s Cholesterol

Bone-Breaking Exercise

● Exercise To Prevent Osteoporosis

‘Healing Bone with Electricity

‘Exercise Builds Strong Bones

*New Drug Reverses Bone Loss

The Leg Bone’s Connected to the Knee Bone

Beefing Up Brittle Bones

Major category

Vitamin D

Treatment—drug

Sources

Exercise

Exercise

Treatment

Exercise

Treatment—drug

Treatment

Treatment< rug

Triple Benefits of Exercising (omits osteoporosis) Exercise

Schroeder (D-COl), NIH, & Women’s Health Legislation

Preventing Osteoporosis Prevent Ion

Advertorial Back to Basics Prevent Ion

Yogurt The Healthier Choice Sources

Advertisement with Q/A Sources

*Calcium Update Absorption

Popeye Was Wrong Absorption

*Muscle Up Your Health Exercise

Support Your Skeleton Men

Does CalcIum Prevent Cancer? (No) Other diseases

*Kids May Bank Bone Peak bone mass

Saving Older Bones Menopause

*Diet Keeps You Younger Longer Prevent Ion

Calcium Fortified Foods (Orange Juice) Sources

0

Title Subcategory

Multibenefits

Multiapproach

Magazine Month

Winter

Fall

Major category

Priorities

Priorities

● Exercise and Osteoporosis

How To Reduce Osteoporosis Risk

Exercise

Prevention

Redbook June ‘Osteoporosis Prevention Peak Bone Mass

Runner's World

Runner’s World

Runner's World

June

August

June

Pop’s The Question

Periodic Concern

Calcium Conundrum

Absorption

Exercise

Men

Phosphates in soda

Excess

Portland research

Sat. Even. Post

Sat. Even. Post

● Yogurt Not Just A Snack

● Boning Up

Sources

Sources

Dairy

Dietary

January

March

Self

Self

Self

Self

May

October

February

February

Osteoporosis and Hibernation (bears)

Artery Clogging Menu at NIH

Where Health-Research Dollars Go

● How Much Calcium Do You Really Need?

Exercise

Legislation

Legislation

Sources

Research

Congress

Women’s issue

Quantity

Shape

Shape

Shape

September

March

October

Exercise, Amenorrhea & Bone Mass

Osteoporosis Update

Having Your Calcium and Iron, Too

Exercise

Overview

Sources

Excess

Risk factors

Dietary

*Walking Your Way to Fitness (omits osteoporosis)Upscale November Exercise Moderate

Vogue February Catching Up on Calcium Sources Diet, supplements

Woman’s Day

Womans Day

Woman’s Day

Woman’s Day

Woman’s Day

April

February

February

September

September

*Back Problems

Calcium for PMS

Looks Affect Your Health

*4-Page Vitamin-Mmeral Pullout

Calcium Bonus

Other diseases

Other diseases

Prevention

Sources

Sources

Back aches

PMS

Multiapproach

Calcium multibeneflt

Calcium multibenefit

Working Mother February Chocolate Milk Calcium Is What Counts Sources Dairy--calories

* = Ar!l~l~~ l~nrg~~ !h~n ~r!e page

SOURCE Consumer Choices Unllmlfed Inc “Review and Analysis of Consumer Magazrw Articles Related to Osteoporosis “ contract report prepared for the Off Ice of Technology AssessmentU S Congress, March 1991

R eferences

1. Advisory Group on Application and Disse-mination of New Research Developments:NIH Workshop on Menopause, FinaZReporf(Bethesda, MD: U.S. Department of Healthand Human Services, Public Health Service,National Institutes of Health, 1993).

2. Alliance for Aging Research, “Capitol HillForum Details Ageism in American HealthCare,” Nevts from the Alliance for Aging Re-search, Washington, DC, May 4, 1994.

3. Aloia, J. F., Vaswani, A., and Yeh, J. K., “Cal-cium Supplementation with and withoutHormone Replacement Therapy To PreventPostmenopausal Bone Loss,” Annals of In-ternal Medicine 120(2):97- 103, 1994.

4. Atkins, A., “The Take-Charge Patient,” La-dies Home Journal, pp. 163, 164, 166, 168,172, 174, November 1990.

5. Bishop, J. E., “Reporting Negative Studiesin the Mass Media,” Journal of the Ameri-can Medical Association 267(7):930-93 1,1992.

6. Bobbin, J., Coordinator of ContinuingEducation, National Association of theAmerican College of Obstetricians and Gy-necologists: Organization for Obstetric, Gy -necologic, and Neonatal Nurses, personalcommunication, Nov. 19, 1991.

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8. Broering, N., Saint Joseph’s Care Group,Inc., South Bend, IN, personal communica-tion, June 1990.

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10. Chausmer, A. B., Medical Director, Metabo-lism and Bone Health, P. A., St, Petersburg,FL, personal communication, Sept. 14,1990.

11. Chesnut, C. H., Professor of Medicine andRadiology, University of Washington Medi-cal Center, Seattle, WA, personal commu-nication, Apr. 10, 1992.

12. Chesnut, C. H., Professor of Medicine andRadiology, University of Washington Med-ical Center, Seattle, WA, remarks to theClinical Workshop on “The Use of Bisphos-phonates in Preventing and Treating Osteo-porosis,” Third International Symposium onOsteoporosis, Washington, DC, Mar. 5,1994.

13. Colorado Department of Health, “Osteopo-rosis Prevention Proposal: Supplement toDisability Prevention Application,” Denver,CO, July 30, 1991.

14. Commonwealth Fund, Surt’ey of Women’sHealth (New York, NY: July 14, 1993).

15. Consumer Choices Unlimited, Inc., “Re-view and Analysis of Consumer MagazineArticles Related to Osteoporosis,” contractreport prepared for the Office of Technology

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26.

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Index

AAARP. See American Association of Retired

PersonsAdministration on Aging

“Bonewise” osteoporosis information kit funding,19,38

“Healthy Older Persons Campaign” cosponsor,36

National Osteoporosis Prevention Week funding,38

National Resource Center on Health Promotionand Aging, 37-38

public service announcements, 13, 38“Age Page” fact sheets, 33Albuquerque Area Agency on Aging televised

health education programs, 38American Academy of Orthopedic Surgeons

osteoporosis public infomlation activities, 21American Association of Retired Persons

menopause workshop cosponsorship, 33National Resource Center on Health Promotion

and Aging, 21, 37-38osteoporosis pub] ic infomlation activities, 21

American College of Obstetricians andGynecologists

osteoporosis pub] ic infomlation activities, 21American Dairy Association, 26American Dental Association

“Women’s Health Campaign,” 2 IAmerican Dietetic Association

osteoporosis public information activities, 21American Journal of Medicine

etidronatc effectiveness study, 8American Medical Association

‘*Women’s Health Campaign,”’ 21American Osteoporosis Alliance

osteoporosis public information activities, 29-30American Running and Fitness Association, 21Ann Landers

osteoporosis column, 14, 19Area agencies on aging. 37, 38Ayerst Laboratories. Sce also Wyeth Ayerst

Laboratorieseducational brochure, 28estrogen therapy advertising campaign, 20-21,

30-31osteoporosis public information campaign, 29

B“Bonewise” osteoporosis infom~ation kit for older

people, 19, 38“Boning Up on Osteoporosis” public infornlation

booklet, 17, 19,28

cCalcitonin

FDA approval status, 15,28,36public information problems, 9

Calcium. See also Calcium Supplementsallowed health claims for calcium intake and

osteoporosis, 35as osteoporosis-related magazine article topic,

15, 16“Calcium for the Prime of Your Life” public in-

fom~ation campaign, 26concerns about promotion through the mass

media, 6Consensus Development Conference on relation-

ship with osteoporosis, 9public infom~ation about role in preventing

osteoporosis, 9, 41-42research findings about relationship with

osteoporosis, 6, 8Calcium supplements

concerns about promotion through the massmedia, 6

paid advertising, 29, 30CDC. See Centers for Disease Control and

PreventionCenters for Disease Control and Prevention

osteoporosis public infornlation activ i(ies, 37state projects in Colorado and Ncw Jersey, 37, 39

I 57


Child Care Association, Wichita, KScalcium nutrition booklet for children, 18

ClearinghousesNational Arthritis and Musculoskeletal and Skin

Disease Information Clearinghouse, 32National Institute on Aging Information Center,

33National Resource Center on Health Pron~otion

and Aging, 37-38Colorado

CDC-funded osteoporosis project, 37,39Columbia Hospital for Women

National Women’s Health Resource Center, 21Commercial publishers

expert review of material before publication, 16health and medical news programming and

publications, 16Commonwealth Fund, Commission on Women’s

HealthLouis Harris and Associates telephone survey, 10

Cooperative Extension System, U.S. Department ofAgriculture

osteoporosis public education activities, 38-39

DDairy Council of Greater Metropolitan Washington,

Inc.workshops for teachers and youth group leaders,

27Dairy industry organizations

American Dairy Association, 26National Dairy Council, 26-27National Dairy Promotion and Research Board,

25-26United Dairy Industry Association, 26-27

Direct-to-consumer drug advertising debate, 31The Discovery Channel

health information programming, 13

EEden, Dr. Dean

radio health infom~ation program, 13Educational resource kit from National Osteoporosis

Foundation, 12-13, 17,23Electricity used to stimulate bone healing

as osteoporosis-related magazine article topic, 15Endocrinologic and Metabolic Drugs Advisory

Committee of the FDAcalcitonin evaluation, 36etidronatc evaluation, 7, 35-36

Estrogen therapyas osteoporosis-related magazine article topic,

15, 16

print advertising campaign, 20-21,30-31public information problems, 9

Ethnic differencesbone density, 4-5television viewing, 12

Etidronateas osteoporosis-related magazine article topic,

15, 16FDA approval status, 7-8,35-36media coverage of research findings, 7-8, 14public information problems, 6,7-8

Exerciseas osteoporosis-related magazine article topic,

15, 16classes offered by hospitals, 23public information about role in preventing

osteoporosis, 41-42

FFederal agencies. See also specific agencies by

nameosteoporosis public information activities, 3

Food and Drug Administrationallowed health claims for calcium intake anc

osteoporosis, 35calcitonin approval status, 36conferences, 34-35

-39

Endocrinologic and Metabolic Drugs AdvisoryCommittee, 7,35-36

etidronate approval status, 7-8, 35nonprescription medication promotion

regulations, 29Office of Consumer Affairs, 35osteoporosis treatment approval, 6-10, 35-36, 41prescription medication promotion regulations, 6,

28,30public notification of approval decisions, 1 (),

35-36,41-42“Women’s Health Initiative,” 34

Food Marketing Institute“Boning Upon Osteoporosis” booklet, 21-22,32

Future Homemakers of America“Student Body” educational program, 20

GGallup telephone survey, 10Gender differences. See also Osteoporosis, in men

bone density, 4newspaper reading, 13television viewing, 12

Girl Scouts*’Healthy Bones” badge, 20New Jersey osteoporosis project, 39

Index 159

HHart’at-d Health Letter, 23Health care organizations

osteoporosis public information activities, 22-24“Health Matters” television health information

program, 13“Healthy Older Persons Campaign,” 36-37Healthy People 2000: National Health Promotion

and Disease Pre\~ention Objectives, 36HHS. See U.S. Department of Health and Human

ServicesHospital for Special Surgery Osteoporosis Center

public information activities, 23,24-25

IInformation sources

commercial publishers, 16federal and state agencies, 31-39mass media, 11-16private organizations, 16-31

Inland Empire Council of the Girl Scouts of theU.S.A.

“Healthy Bones” badge, 20

JJournal of the American Medical Association

survey of accuracy of media coverage of researchfindings, 11

LLending libraries

hospital-operated, 23Lifetime Channel

health information programming, 13“Living with Aging” pamphlet series, 33Louis Harris and Associates telephone survey, 10

MMagazines

content analysis of osteoporosis-related articles,15

lead time for news stories, 14osteoporosis article length, 15osteoporosis-related article survey, Appendix A,

3, 14-16target audiences, 14-15

Marion Merrell Dow, Inc.Calcium Communique newsletter, 29

Mass mediabias against negative studies, 12brevity of news reports, 5, 11-12criticism by scientists and health care

professionals, 11

influence of, 11number of people reached by, 11osteoporosis public information activities, 11-16prescription medication promotion, 5-6researchers’ bias against submitting negative

studies for publication, ] 2techniques to attract public attention, 11types of health reports, 11

Mayo Clinic Health Letter, 23“Medicine for the Layman” lecture series, 32Melpomene Institute for Women’s Health Research,

St. Paul, MNosteoporosis public infom~a(ion activities, 20

Melpomene Journal, 20Mid Michigan Regional Medical Center, Midland,

MIosteoporosis and nutrition presentation, 18

“Milk. It Does a Body Good” advertising campaign,26

Mirkin, Dr. Gaberadio health infornlation program, 13

NNAACOG. See Nurses Association of the American

College of Obstetricians and GynecologistsNational Arthritis and Musculoskeletal and Skin

Disease Infommtion Clearinghouse, 32National Dairy Council

nutrition education materials, 26-27osteoporosis public infom~ation activities, 26-27Visiting Professor/Speakers Bureau program, 27

National Dairy Promotion and Research Board“Dairy Does a Body Good” program funding, 20osteoporosis public infornlation activities, 25-26

National Health and Nutrition Examination Surveybone density findings, 4-5number of women affected by osteoporosis, 1, 3

National Institute of Arthritis and Musculoskeleta]and Skin Diseases

‘“Boning Upon Osteoporosis” booklet, 21-22, 32Information Clearinghouse, 32Office of Scientific and Health Communications,

32osteoporosis public infomlation activities, 31-32resource center on osteoporosis establishment,

9-10,40,41National Institute of Dental Research

osteoporosis public infomlation activities. 34National Institute of Diabetes and Digesl

Kidney Diseasesosteoporosis public information activ

National Institute on Aging“Age Page” fact sheets, 33Infomlation Center, 33“Living with Aging” pamphlet series.

i}’c and

tics. 33-34

33


osteoporosis public information activities, 32-33National Institutes of Health. See also specijic insti-

tutes by name, e.g., National Institute of Arthritisand Musculoskeletal and Skin Diseases

Consensus Development Conference on calciumintake and osteoporosis, 9

Consensus Development Conference on osteopo-rosis, 33

osteoporosis public information activities, 31-34resource center on osteoporosis establishment,

9-10,40,41National Osteoporosis Foundation. See also Nation-

al Osteoporosis Prevention Weekdescription, 17FDA approval disclaimer, 19Gallup telephone survey, 10information requests, 3, 4, 18-19letters illustrating typical questions and concerns,

3,4location of offices, 17membership, 17national resource center function, 18-19, 40position statements, 30public service announcements on osteoporosis,

13,38quarterly newsletter, 19special population targeted publications, 19toll-free telephone number, 18-19type of infomlation available, 19

National Osteoporosis Prevention WeekAdministration on Aging funding, 38educational materials, 18educational programs, 18educational resource kit, 12-13, 17, 23“Partners in Prevention,” 17-18pharmaceutical company funding, 28publicity efforts of American Osteoporosis

Alliance, 30National Resource Center on Health Promotion and

Aging, 21,37-38National Women’s Health Network

information packet, 21newsletter osteoporosis-related articles, 20-21

National Women’s Health Report newsletter, 21National Women’s Health Resource Center, Wash-

jng(on, DCosteoporosis public information activities, 21

Ne\~’ England Journal of Medicineetidronate effectiveness studies, 7, 14survey of accuracy of media coverage of research

findings, 11New Jersey

CDC-funded osteoporosis project, 37,39Girl Scout badge on osteoporosis, 39

New York City Department for the Aging “ProjectStay Well” health education program, 38

New York 7imescoverage of sodium fluoride study, 6

Newspaperscoverage of etidronate studies, 7, 14number of news reports about osteoporosis, 14readership statistics, 13tangibility of information, 14types of health reports, 13-14

NHANES. See National Health and Nutrition Ex-amination Survey

NIA. See National Institute on AgingNIAMS. See National Institute of Arthritis and Mus-

culoskeletal and Skin DiseasesNIDDK. See National Institute of Diabetes and

Digestive and Kidney DiseasesNIH. See National Institutes of HealthNorwich Eaton Pharmaceuticals, Inc.

brochure publication, 29Nurses Association of the American College of Ob-

stetricians and Gynecologistsosteoporosis seminars, 29

Nutrition education programsfor adults, 27for children, 18,20,26-27for health care professionals and educators, 27

Nutrition Labeling and Education Act of 1990,35

0ODPHP. See Office of Disease Prevention and

Health PromotionOffice of Disease Prevention and Health Promotion

“Healthy Older Persons Campaign,” 36-37National Health Information Center, 36

Office of Research on Women’s Healthosteoporosis-related activities, 34

Office on Women’s Healthosteoporosis-related activities, 37

Older Women’s Leagueosteoporosis public information activities, 21

Osteoporosisbenefit to pharmaceutical companies of greater

public awareness about, 28definition, 1discrepancy between quantity of information and

perceived lack of information, 3-5fractures most often attributable to, 1

information sources, 3in men, 10-11, 15, 40-41number of people affected, 1, 3public awareness, 3public knowledge surveys, 10-11

—.

Index 161

rcsourcc center, 9-10b’Osteoporosis: Stop the Lady-killer” public in-

fom]ation campaign, 39Osteoporosis Awareness Resource Center, Spokane,

WA‘bGcncrations of Prevention” tee shirt, 18

Osteoporosis Center News newsletter, 23-24The Osteoporosis Report newsletter, 19

P“Partners in Prevention”

Associate, Contributing, Supporting, and Sustain-ing Partners, 17-18, 22-24

membership, 17Peck, Dr. William

talk show interview with, 13Peoples Dmg Stores, Inc.

“’Living with Aging” pamphlet series, 33Perspective in Health Promotion and Aging

newsletter, 38Phammceutical companies. See also .Ypecific conzpa-

nies b)’ namebenefit of greater public awareness about

osteoporosis, 28direct-to-consumer advertising, 31mass media bias against reporting negative stud-

ies and, I 2National Osteoporosis Prevention Week educa-

tional materials funding, 28osteoporosis public information activities, 27-31purpose of public information campaigns, 27-28use of mass media to promote prescription

medications, 5-6, 30PHS Action Plan for Women’s Health, 37Prescriptions written at the request of the patient, 5,

11Private organizations

dairy industry organizations, 24-27educational activities, 16-17health care organizations, 22-24infom~ation distribution methods, 16National Osteoporosis Foundation, 17-19pharmaceutical companies, 27-31types, 16voluntary associations, 19-22

Procter and Gamble Pharmaceuticals. See NorwichEaton Phamlaceuticals, Inc.

“Project Stay Well” health education program, 38Public Broadcasting Service

osteoporosis videotape, 20Pliblic Health Reports, 35Public service announcements

television programming, 11, 12-13, 26, 38Wisconsin public information campaign, 39

RRadio

health information programming, 13listener statistics, 13

Resource center on osteoporosis, 9-10,40,41Rhone-Poulenc Rorer Pharmaceuticals, Inc.

educational brochures. 28

sSandoz Phamlaceutical Corporation

“Boning Upon Osteoporosis” revision funding.28

Sodium fluoridemedia coverage of research findings, 6public information problems, 6research findings, 6

Spanish-language materials, 27States. See also speeific states by name

osteoporosis programs, 31, 37, 39“Student Body” nutrition program, 20Sullivan, Dr. Louis

public service announcements on osteoporosis,13,38

TThe Surgeon General’s Workshop: Health Promotion

and Aging, 36Television

Albuquerque Area Agency on Aging televisedhealth education programs, 38

cable television programming, 13health infom~ation programming, 11, 13National Dairy Promotion and Research Board ad

campaign, 26public service announcements, 11, 12-13,26viewer statistics, 12

Timeless Pioneers, 21“20/20” news magazine program

osteoporosis segment, 16

uUnited Dairy Industry Association, 26,27University of Connecticut Health Center Osteoporo-

sis Center“Boning Upon Osteoporosis” public information

booklet, 19,28newsletter, 23-24

U.S. Department of AgricultureCooperative Extension Service, 26Cooperative Extension System, 38-39National Dairy Promotion and Research Board,

25-26U.S. Department of Health and Human Services


agencies involved in osteoporosis public informa-tion activities, 31-39

USDA. See U.S. Department of Agriculture

vVisiting Professor/Speakers Bureau program, 27

wWall Street Journal

coverage of sodium fluoride study, 6Washington Dairy Association

audiovisual catalogue, 20“Healthy Bones” Girl Scout badge development,

20

Wisconsin“Osteoporosis: Stop the Lady-killer” public in-

formation campaign, 39Women’s Association of the National Rural Health

Networkeducational campaign, 20

“Women’s Health Initiative,” 34Women’s Midlife Resource Center, 21Wyeth-Ayerst Laboratories

estrogen therapy print advertising campaign,30-31

public information materials, 28

Y“Your Health” cable television program, 13

f7 US. GOVERNMENT PRINTING OFFICE: 1994– 30 1- 804 / 174 ~ 8

Public Information About Osteoporosis: What's Available ...

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