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AIDS activism : Nothing for us without us
1. Nothing for us
without us !
From community-based principles
to health democracy:
How AIDS activists have created their own place
in the French health care system
2. 70’s : The beginning
The concept of patients’ representation takes
place in the larger framework of patients’ rights
In the 70s, the state started to acknowledge the
rights of patients to consent to treatment
1974: 1st charter of hospitalized patients
3. And then came AIDS…
The lack of a medical solution to prevent death in
the AIDS field changed the relationship between
doctors and patients
1983: Denver statement : “We are people living
with HIV/AIDS, we struggle for life”.
PLWHA demand to be included in every kind of
decision and have their experiences
acknowledged
4. … and patients’ voice emerged
In 1984, Daniel Defert created AIDES, the 1st
French HIV CBO
Based on community involvement
Concrete action provides material for advocacy
Experience = knowledge. The objective is to
change society
1992 : PLWHA representatives started to
participate in ANRS’ work
5. The G.I.P.A principle
GIPA = Greater Involvement of People living with
HIV & AIDS
Adopted in Paris in 1994 by 42 countries
The Joint United Nations Programme on HIV and
AIDS (UNAIDS) has promoted GIPA since its
beginning by involving people living with HIV at
all levels
6. 1995-2004 : the legal issue
3 key-dates:
1996: « Juppe statement »
1998-99: Health convention organised by
the authorities
2002: 4th March law relative to patients’
rights and quality of the health care system
7. Representation, but in conditions…
NGOs and individuals have to meet conditions to
represent patients
Every representative has to be a member of a
registered NGO
The agreement is delivered by a national
commission
8. The example of COREVIH
COREVIH: Regional Coordination for HIV/AIDS
Healthcare
Their aim is to improve the quality of comprehensive
care of PLWHA independently of hospitals
In the fields of:
- Care
- Support
- Research
- Prevention & Testing
Editor's Notes
Since the end of the 2nd World War, there has been a global movement of « humanisation » of health care institutions.
The 1st charter emphasised quality of care, dignity and respect of patients and introduced the key issue of rights and duties of every stakeholder.
During the international AIDS conference in Denver in 1983, PLWHA met each other and wrote a statement focusing on the place PLWHA have in the global decision making process.
The message was clear : « As you can do almost nothing to save our lives, at least listen to what we have to say about our experiences and regonize us as masters of our own lives. »
For PLWHAs organisations, the key messages were :
1. Form caucuses to choose your own representatives, to deal with the media, to choose your own agenda and to plan your own strategies.
2. Be involved at every level of decision-making and specifically serve on the boards of directors of provider organizations.
3. Be included in all AIDS forums with equal credibility as other participants, to share your own experiences and knowledge.
We would see later that somehow the idea of involvement at every level came from this statement.
With AIDES, Daniel proposed a new area of solidarity, arguing that soon, the community will be the better informed on immunity problems than doctors who did not even dare to announce the diagnosis to their patients and that nothing was planned for them: neither a cure nor rights, not even the right to die with dignity.
It is really linked to our subject because the purpose was to really change the society by obtaining rights. We wanted (and still want) to take part in every stage of the decision making process.
In 1989, at the Montreal conference, Daniel made a presentation called : « A new social reformer: the patient », showing that the AIDS epidemic clealy changed the relationship between doctors and patients on an individual and global level.
On an indivdual level, the most spectacular result was the appropriation of medical knowledge by the patient.
On a global level, we experienced the power of community pressure. This pressure contributed to the creation of the first free and anonymous testing centers, for example.
Let me just quote Daniel in Montreal: « Community-based organisations, such as AIDES, set up their action in the hospital environment, introducing support, funds, even food and housing and PLWHA became the educators of nurses, social workers… Their testimonies brodcast by the media became a major source of information and collective experience of this illness. Their function became more and more political. »
Political: the word is out and as a lot of things started from the emergency of the first decade of the aids epidemic, we had a foot in the door, and we wanted more.
These principles and actions led to the legal issue.
The principle of the Greater Involvement of People Living with HIV/AIDS (GIPA) was formally recognized at the 1994 Paris AIDS Summit, when 42 countries agreed to support an initiative from a group of activists including Arnaud Marty Lavauzelle, President of AIDES, to “strengthen the capacity and coordination of networks of people living with HIV/AIDS and community-based organisations”. They added that, “by ensuring their full involvement in our common response to the pandemic at all—national, regional and global—levels, this initiative will, in particular, stimulate the creation of supportive political, legal and social environments”.
The Paris Declaration also expressed “determination to mobilize all of society—the public and private sectors, community-based organisations and people living with HIV/AIDS—in a spirit of true partnership”, as well as to fully involve “people living with HIV/AIDS in the formulation and implementation of public policies [and] ensure equal protection under the law for people living with HIV/AIDS”.
In the french context, we really applyed this principle.
What’s important now, is that all the mesures, laws and institutions that I’m going to talk about were implemented under patients’ pressure.
Of course there was a political willingness, but each time we were around.
In the Juppe statement:
Patients have to be informed about their rights
Conciliation boards between patients and heatlth care institutions were set up
The first patients representatives were elected on hospitals boards of trusties and in regional and national health conferences
In 1996, the CISS - wich is a group of organisations on health - was created by 15 organisations, including AIDES : the aim of the CISS is to inform patients concerning their rights, train patients’ representatives, survey transformations of health care system and advocacy.
180 000 people took part in the health convention, with more than a thousand meetings
The NGOs proved that they were a force to be reckoned with as we were able to make concrete proposals
Finally, the Kouchner law established patients’ representation
To meet the conditions, an NGO has to prove that it:
Defends patients’ rights
Provides training to its members
Is representative of the public it defends
Is independant from professionals of care and industry
Has a clear financial management
Every representative has to:
Attend the meetings
Try to train himself
Give feedback to his organisation
Coordinate his actions with other representatives
Finally, what is really an achievement in the AIDS field is the creation of COREVIH in 2007.
They are managed by: Representatives of health institutions , Medical and social centers,
health care providers, Patients and health care users’ and qualified people
At least 20% of the members are reresentatives of patients or health care users
There are 28 COREVIH in France and we are present almost everywhere. But this new role is a very hard exercise.
AIDES’ representatives have to face a lack of democracy in decision making processes and the focus on financial and legal issues prevent us from doing what we are here to do:
talk about PLWHAs needs. But, we are developping new skills and we are now quite well adapted to this new environment.
We are also involved in the expert group in charge of medical guidelines in the AIDS field, we are involved in the writing of the national AIDS plan etc
Nowadays, nobody would even dare to talk about an illness without having a patient around.
And here are some of the limits…
With time and with a kind of professionalization of patients’ representation, it may lose its polical meaning.
Patients are everywhere, so, we are part of the furniture.
We have to be very careful that in achieving our goals, we do not lose this political meaning and there is a great difference between fighting for rights and experiencing them.
The developement of health democracy forces us to train, to obtain new skills, knowledge and as we become in a certain way « professionals of representation », we must ask ourselves whether we really still represent patients well ?
So, as you can do almost nothing if you are outside the system, you have to be very careful to do not lose your soul once you are inside…
And, to avoid to lose our soul, we keep on being nasty boys and girls !
That’s why, I will finish with this campaign that we made during the last presidential election.
You can read on the poster « Would you vote for me if I was HIV positive ? »
What’s interesting is how we proceeded : we proposed the poster to all the candidates (except the fascist of national front, of course),
and as one accepted, the others didn’t dare to refuse, except Nicolas who didn’t answer.
So, we created another poster and the claim was : « Would you vote for me even if I do not care about HIV ? »
and, as we were invited to a famous TV show, we called his staff and said to them :
« Listen, in a couple of hours, we will show this poster on TV… or the other one if you agree, of course ».
Half an hour before the show, we had the agreement.
