THE IMPORTANCE OF PATIENT
ADVOCACY GROUPS IN
ONCOLOGY COMMERCIALIZATION
Oncology USA 2010 – Boston, MA 03.23.10biomedwoRx
Michael W. Young
Principal,
biomedwoRx: Life Sciences Consulting
Relevant Background
Board of Directors – Cutaneous Lymphoma Foundation, the only non-profit patient advocacy group devoted to this orphan cancer
Head of Professional and Patient Advocacy for Ligand Pharmaceuticals in oncology, dermatology, and pain management sectors
Professional Relations manager for Burroughs Wellcome Co. in the HIV / Antiviral franchise working with over 60 patient and professional groups
Patient Advocacy Groups
In one form or another have been in the US for over
a hundred years
March of Dimes 1938 – polio
American Lung Association 1904 - tuberculosis
Major growth coincided with major epidemics
including the AIDS epidemic
Breast Cancer movement
Non-Profit vs. For-Profit Patient Advocacy Groups
Patient Advocacy Groups in Oncology
There are over 200 advocacy groups in the solid and hematology space alone:
Cancer Care, Inc.
Lymphoma Research Foundation
American Cancer Society
Leukemia and Lymphoma Society
Pancreatic Cancer Action Network
Susan G. Komen Foundation
Cutaneous Lymphoma Foundation
Y-Me National Breast Cancer Organization
American Brain Tumor Association
Is This How You See
Patient Advocacy Groups?
Growing in Potential Importance
Patient-centric healthcare and promotion is now the essential thrust of many pharma, biotech, and device marketers
The rapid evolution of “personalized medicine” and the dramatic growth of genomic sequencing capabilities (eg. Illumina, Life Technologies, Sequenom)
The impact of consumerism on therapy and quality of life tradeoff choices makes interaction with patients a mandate.
Advocacy Groups As Partners
Encourage you to look at Patient Advocate Groups
as commercial and development partners
To recognize the fertile relationship ground which
with careful planting and cultivation can yield more
productive “crops” of products
To bring to light benefits for both:
Smaller companies developing products
Larger companies marketing products
KOL Development Partners
Medical Advisory Boards and Boards of Directors are often the Who’s Who in Disease Management
Opportunities for Market Research, Focus Groups, and Roundtable discussions
Speaker Bureau resource
Opportunities to build lasting, trusting KOL relationships
Opportunities to create additional publications and augment publication planning
Chance to understand local and regional referral patterns
Regional and National influence mapping
Rich Market Research Territory
Can readily help outline and characterize the unmet
clinical and patient needs
Can make dramatic impact on design of:
Clinical trials
Drug administration protocol
Design of product
Dosing regimen
Opportunities to understand and promote
improvements to patient Quality of Life
Benefit Scope and Speed of
Commercial Initiatives
Approval Process
Work with Patient Education Coordinators
Support Public Hearings with ODAC and other FDA
convocations
Provide additional appropriate lobby for new
therapies
Ready source of patient success or patient unmet need
examples who are compelling and credible
Benefit Scope and Speed of
Commercial Initiatives
Launch Resource
Spokespeople for public relations activities, media
tours, online presence
Press release focus and coordinated “buzz”
development
Sales training resource (in disease awareness and
impact on patients and healthcare delivery)
Keynote roles for launch sales meeting
Referral point for new patients
Benefit Scope and Speed of
Commercial Initiatives
New Indication Expansion
Credible source to explain the unmet clinical need
Opportunity to facilitate rapid information
dissemination through existing patient base
Excellent first-line feedback on side effect management
Abundant Source of Competitive Intelligence
Often involved in recruitment for clinical trials
What trials can you share?
What trials are your competitors mounting?
Are your competitors funding specific patient initiatives?
What do you know about the advocacy group Medical
Advisory Boards?
Source of Medical Opinion to ODAC
Position or Guideline paper development
May share complications encountered by competitor
products
Healthcare Reform in 2010
Dependent children will be allowed to remain
on their parents' health insurance up to age 26.
Existing insurance plans will be barred from
imposing lifetime caps on coverage.
Insurers will be prevented from canceling
insurance retroactively, except for fraud.
Insurance plans cannot exclude coverage for
pre-existing medical conditions for children
under age 19.
Healthcare Reform in 2010
Steps will be taken to fix the doughnut hole; in the first year, those who hit the doughnut hole will receive a $250 rebate. Next year, the cost of drugs in the doughnut hole will go down by 50 percent.
Prevention care will be available to Medicare beneficiaries without co-payments or deductibles beginning in 2010.
People with medical conditions that make them uninsurable may be able to get coverage through a federally subsidized health insurance program, to be established within 90 days. The legislation limits spending for this program to $5 billion
What will all this mean to your business and how can patient advocate groups help?
Rapidly Build Effective Linkage
Through Advocacy Washington Offices
Many Advocacy Groups have:
Washington representatives working the Hill
Internal policy experts monitoring healthcare reform
impacts on their patient populations
Membership or appointments to key government
advisory committees
Dedicated interaction with FDA, DEA, NIH, NCI, etc.
Insurance Industry interaction and knowledge
Patient Assistance Programs
There are currently over 1000 prescription drug patient assistance programs available to uninsured patients and many advocacy groups support resource databases for patients.
The majority of these programs are pharmaceutical industry sponsored
Many advocacy organizations serve a clearinghouse function or provide modest support for ancillary needs (eg. transportation to care sites).
How will these change under the new Healthcare Plan?
Additional Points of Beneficial
Interaction with Advocacy Groups
Patient Registries
Opportunities to support and review pooled data
Online Presence
Educational Website collaboration
CME / Patient Education links
Therapy Webinars for patients and caregivers
Convention / Symposia Support
Support for co-sponsored disease state presentations
Collaborative KOL gatherings
Recommendations for Successful
Interaction with Advocate Groups
Establish a Professional / Patient Advocate Capability
Provide necessary training
Compliance / Grants
Clinical
Product
Alliance Management
Do Your Homework – Not all groups are valuable to your commercial effort
Establish one point of contact for each organization