TRT-5: French activists united
All of them shared the same objective: to unite and together tackle the urgent therapeutic needs of AIDS patients.
In 2005, there are now eight French organizations of complementary competences and modes of action represented within TRT-5 : Actions Traitements, Act Up, Aides, Arcat Sida, Dessine-moi un mouton, Nova Dona, Sida Info Service et SolEnSi. TRT-5’s objective, which has not changed since 1992, is:
- On one hand, to make aware the needs of people living with HIV to those in the research field and those in charge of medical care (surveillance of ethics in research, evaluation of clinical studies’ regulations, compassionate access to drugs for people in multiple treatment failure, etc.);
- On the other hand, to take part in the diffusion to patients of accurate and updated information on treatments and therapeutic research through the group’s member organizations.
The battle for access to drugs
TRT-5’s start in 1992 was not simple: gradually, it was necessary to overcome the rivalries that might have existed between some organizations, to get to know each other, to establish new lines of work and define the ways of working together. Slowly, TRT-5 began to take shape as an informal working group where medical questions were discussed or collective decisions taken through a consensus. Over the following years, the conflicts with the pharmaceutical companies would bring the group even closer together. When for the first time TRT-5 asked for early access to new investigational drugs they were met with the systematic refusals from pharmaceutical companies. Yet the group was not discouraged and instead became more solid and prepared for action. Gradually, the synergy built up by the actions conducted by TRT-5 and its member organizations began to defeat the resistance of the companies, that finally accepted to set up compassionate access to d4T, 3TC and other protease inhibitors. This success will gave strengths to TRT-5 and contributed to giving it a place in the French activist scene.
TRT-5’s partners
At the same time, TRT-5 developed relationships, and even true partnerships, with different key authorities in the HIV field.
The French National AIDS Research Agency (ANRS) is truly the first historical partner of TRT-5. Since 1990, the ANRS has organized monthly informative meetings on current or upcoming studies, especially targeted for organizations. In 2005, TRT-5 still regularly meets with the ANRS director to share views on the studies and scientific strategies of the French agency. TRT-5 is also represented in several ”Joint Actions“ (working groups that evaluate the interest of the research projects presented to the ANRS), notably within the Joint Action on ”HIV clinical trials“ and ”vaccine trials“. In addition, all ANRS research protocols are first reviewed by TRT-5, in the presence of the principal investigator, before they are passed on to the public protection committee.
With the French drug agency, which in 1998 became the French Health Security Agency for Medical Products (Afssaps), TRT-5 works together in order to make sure that early access to drugs through the ATU program (French for Temporary Use Approval) is working well, to follow up on drugs’ registration process, and pharmacovigilance of approved products.
TRT-5 has also developed contacts with the French Authorities, particularly with the General Health Administration and the Hospital and Organized Care Administration, two Departments of the Health Ministry. Recently, the group was asked by the General Health Administration to work on the revision of the August 2004 law regulating bio-medical research in France (Huriet-Sérusclat law), which implements the European Directive on clinical trials and is integrated in the French Law on Public Health. During the last few months, the group has also been putting constant pressure on the General Health Administration in order for them to allow all people living with HIV in France to have free access to a series of services and products that are essential to a comprehensive medical care package (access to products to fill in ”hollow cheeks“, to DEXA tests, to therapeutic drug monitoring, etc.).
Recently, TRT-5 has also been working together with the Hospital and Organized Care Administration on reforming their information and human immune deficiency care centers.
On several occasions and over different subjects, TRT-5 has addressed the French National Council on AIDS, a body whose duty is to give advice on ethics over questions related to HIV infection.
And finally, several members of TRT-5 participate in the work run by the European AIDS Treatment Group (EATG).
One-day seminars for making progress
Every Spring over the last seven years, TRT-5 has organized a one-day seminar in the offices of the Health Ministry whose objective is to reflect over currently concerning issues related to HIV infection that need a particular mobilization. The issues discussed were resistance tests in 1999, plasma and intracellular ARV drug monitoring in 2000, side effects and pharmacovigilance in 2001, therapeutic failure in 2002, immune therapy in 2003, HIV and hepatitis co-infection in 2004, and long-term effects of HIV infection and their associated treatments in 2005. In this last seminar, which took place last April 1st, a report will be published that will introduce the key aspects of the interventions and, we hope, will help to start raising awareness and launching initiatives for a better knowledge, prevention, and optimal management of these long-term effects.
As it stands now in 2005, TRT-5 has become a solid group, deeply committed to an improved recognition of the needs and rights of PLWHAs.
Corinne Taéron, Coordinator, with Elise Bourgeois-Fisson, of TRT-5
EATN - European AIDS Treatment News, Volume 13, I – Spring 2005
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