Vivre Sans Thyroïde : Levothyrox Shortage in 2013 in France - The Patient Advocate Perspective.

Drug shortages: The 2013 Levothyrox®

shortage in France

The patient advocate perspective

Association « Vivre sans Thyroïde » - www.forum-thyroide.net

Summary

�  Muriel and Levothyrox®

�  What is Vivre Sans Thyroïde ?

�  Levothyrox® shortage in France, 2013

�  General thoughts about drugs, the patient advocate perspective

Muriel and Levothyrox®

�  In 2010 I got sick (Hashimoto’s thyroiditis)

In 2009: All right July 2010: first prescription

April 2010: Sick, tired, moody + 11kg

Since 2011: All smile !

Vivre-sans-thyroïde, a patient forum

« Vivre sans Thyroïde » is an online discussion forum for thyroid patients created in 2000, run and moderated by patients.

•  More than 15.500 registered users in the forum

•  ~ 5000 visitors / > 100 messages per day

•  Facebook group: 2350 members

•  Facebook page: 1.600 likes

•  Twitter account: > 500 followers

•  YouTube account/ > 92.000 views

Vivre-sans-thyroïde, a non-profit organization

The non-profit association “Vivre sans Thyroide” was created in 2007. Both website and association are entirely run by volunteer patients, without any subventions.

•  National and international cooperation (Alliance Maladies Rares, CISS, Thyroid Federation International, Thyroid Cancer Alliance)

•  Participation in congresses (SFE, ETA …), elaboration of patient literature, studies …

•  Organization of patient meetings, patient conferences

•  Patient advocacy, in particular in Health 2.0

What I do in the association :

�  Member of the board

�  IRL meetings ("In Real Life") – “Café Thyroïde” In Paris

�  Community manager for Facebook, Twitter, Youtube

�  Medical congresses

�  Videos of medical conferences

�  Coordination of studies to advocate our difficulties as patients

Vivre-sans-thyroïde, a patient association

Vivre-sans-thyroïde, a patient association

What I do, related to health topics:

�  E-Health advocate / E-patient activist

�  Interviews (newspapers, TV) about patient advocacy, thyroid issues ...

�  New job since June : Deputy Coordinator of

Levothyrox® shortage 2013 May 22: First question from a patient: « Levothyrox out of stock? »

We immediately contact Merck-Serono France.

May 28: the company replies and indicates that some of the 8 different Levothyrox® dosages have « temporary supply difficulties ».

The patients in our social networks stay calm, discuss, try to find solutions; a patient creates a conversion table showing how to combine different dosages.

The patients ask questions, worry about running out of stock, but remain calms, the communication functions correctly.

Early August:

Another patient organization, AFMT, after receiving questions from patients, decide to send an « open letter » to the Minister of Health and to alert the press.

Following a first, alarming article, there is a « media uproar »:

more than 150 articles published within 2 weeks !!!

Many patients start panicking, there is a rush on pharmacies, « paranoia », everybody tries to build up some stock

=> so now there are real stockouts!

We publish explanations, provide information, try to calm anxious patients.

Patients are questioning their relationship with their daily drugs !

Mid-August:

We are finally in direct contact with the French Drug Agency, ANSM.

The ANSM creates an emergency procedure, publishes statements and patient information. A special telephone helpline is put into service. Merck-Serono imports Eutirox (equivalent of Levothyrox) from Italy.

« Vivre sans Thyroïde » publishes statements, updates, and a « press review », updated every day, to point out the unnecessary (and counterproductive) « media hype ».

End of August:

We start finding echo in social media, and finally manage to get 2 articles published in the press, explaining the facts: Rue89 and Acrimed.

Whereas Levothyrox® has never been totally « out of stock », now there are true stockouts of other thyroid drugs: Néomercazole®, Téatrois®, Euthyral®… but there are no headlines, as these don’t affect « 3 million of French patients »!

September 2013:

We are invited to a meeting with the ANSM, to discuss the supply problems of all these thyroid medications.

October 2013:

We publish an « Open Letter » to the French Minister of Health, about the shortages of various thyroid medications, and how these affect the patients. This has been shared quite a lot via social media, but we never received a reply from the Minister …

In March 2014, after 2 members of the parliament submitted official questions about this subject, there has been a short statement, « the situation is under investigation », but never any direct reply to our association …

Summer 2014:

Again, there are some (minor) shortages of certain dosages.

This brings back memories of the difficult times in 2013 … it is very hard to reassure the patients and to avoid « panic buying ».

Summer 2015 ????

Merck Serono promised that there won’t be any new shortages this year, and explained that they ordered more stocks than usual for 2015.

But we know, from our cooperation with patient organizations in other countries, that there have recently been shortage problems for example in Spain ... it is important to have enough drugs for ALL patients, in ALL countries!

General thoughts about drugs, the patient advocate perspective :

�  Taking a drug every day is tough, for every chronic disease patient.

�  Patients are blamed for compliance issues (costs, medical complications etc)

Patient Panel thoughts about compliance at the “observance, autonomie et responsabilité” conference

General thoughts about drugs, the patient advocate perspective :

�  Patients have an intimate relationship with the medecine they have to take every day

�  How can you trust a pharmaceutical companies if there are shortages/stockouts?

�  With Internet, news (and rumors !) travel fast and get out of hands quickly.

�  Patient organizations have a lot to say – listen to them !

�  We need more communications regarding this issues between pharmaceutical companies, health authorities and patient associations.

antenneIDF@forum-thyroide.net

twitter @misslondres