ACT UP/Paris Speaks

The Law That Kills

Inadequacy of the French Ministry of Education's AIDS Prevention

In France, A Jail Sentence is a Death Sentence

Ethical Issues Surrounding Clinical Reseach in Developing Countries

The Law That Kills

By French law, since December 31, 1970, an intravenous drug user is considered a criminal, and nothing else but a criminal, as both drug use and drug trafficking are penalized. Such a repressive policy has led to a criminal delay with regard to prevention among I.V drug users and access to care.

In France, needles and syringes have only been sold without prescription from 1987. To date installations of needle dispensers are in an embryonic state. In Paris, a city with over 2 million inhabitants, only 4 dispensers have been put in, but they are hardly ever in good working order.

In 1994, the government had announced the creation of 5000 places in methadone - substitution programs, a number still dramatically inadequate. To date only 2600 of those are available and the wait to enter such a program is tragically long. The substitution policy in France never got beyond a development level with a possible comparison to the scope of the epidemic. The result of the all-out repression has been immediate: 30% of I.V drug users are HIV positive.

Finding a clean needle at night is extremely difficult: while hospital emergency wards are required by law to hand out free syringues around the clock, they are unable to do so due to lack of public funding. Due to legal difficulties, non-gouvernmental organizations cannot hand out free syringes whthout placing themselves at the mercy of the police and various agencies, all of which have the power to force them to stop. Worse : merely owning a hypodermic syringe is considered by the police as evidence of drug use and may lead to prosecution.

In prisons, where drug use can still be found, nothing is done to prevent infections. As regard access to care, difficulties are tremendous. In hospitals, I.V drug users living with AIDS are considered first as criminals, then as sick people, and such patients frequently leave the emergency ward with nothing more than some quickly-given aspirin. As for care, it is often subjected to a blackmail to severing. Besides, the entire caring plan toward I.V drug users is quite unsuited: there are far too few reception centres and support and care facilities to meet demands.

ACT UP/Paris demands that:

Inadequacy of the French Ministry of Education's AIDS

No effort has been made to coordinate AIDS prevention throughout the French public education system on a nation-wide basis as part of a comprehensive plan covering several academic years and explicitly addressing the specific needs of clearly identified target populations. M. Bayrou, the minister in charge of public education, refuses to require all schools to provide access to free condom, lubricant and dental dam dispensers to students aged 10 and more.

The minister refuses to implement proposals made over two years ago which would require all students to receive two hours instruction on AIDS in the course of every academic year. The minister is reluctant to include discussions of homosexuality in AIDS education.

All the ministry in charge of the public education system has so far achieved is:
- an AIDS education video which does not address the issues surrounding access to health care for people with AIDS, implies that feminine sexuality does not actually exist, and never mentions either homosexuality or intravenous drug use.

- a special teacher training program which has so far targeted 250 teachers out of 800,000.

Ongoing Project: a common platform regarding HIV-related issues is being developed by ACT UP/Paris, AIDES and various teachers' unions in order to put more decisive pressure on the Ministry of Public Education.

ACT UP-Paris demands:

In France, A Jail Sentence Is a Death Sentence

It was only in 1994 that the French government began paying attention to the health of incarcerated persons, although the situation had long been alarming. Access to health care was known to be difficult and precarious, and numerous non-governemental organizations had tried to raise the public's awareness of the issue.

In 1994, the French government finally decided that health care would be provided to incarcerated persons by health professionnals instead of prison guards, as used to be the case until then, incredible as it may seen. France is the European country with the largest number of HIV-infected residents, and the number of incarcerated drug users is very large due to the French government's policy of repression.

Consequently, the rate of HIV infection among the prison population is very high (in Fleury-Merogis, the largest women's jail in Europe, 30 % of inmates are infected whith HIV). This explains why the government's 1994 decision was a source of relief for all AIDS organisations.

Two years later, however, the French government's failure is obvious. As no tangible efforts have been made to implement the new policy and no funds have been appropriated for that purpose, the new law's provisions are still not being carried out. In France, a jail sentence still amounts to a death sentence for all persons with severe health problems, including, HIV and AIDS.

The French government's disastrous failure to come up with a decent policy regarding health care in prisons is made worse by the conditions prevailing in most French jails, which are delapidated and overpopulated.

In addition, the French government refuses to carry out HIV prevention in jails. Condoms are seldom available and clean hypodermic needles are nonexistent. By almost systematically refusing to pardon severely sick persons on medical grounds, French President Jacques Chirac deprives them of proper medical care and reduces their chance of survival. Most of them are only released a few days before they die, so that their deaths are not taken into account by prison statistics.

ACT UP/Paris demands:

Ethical Issues Surrounding Clinical Research In Developing Countries

All clinical trials conducted in a given country must address a serious public health issue relevant to that country. A trial was conducted in the Ivory Coast in 1995 by the WN pharmaceutical company, which is funded by Russian capital and whose headquarters are located in Luxemburg. The purpose of that research was to test the effectiveness of an "organic immune modulator of natural origin" whose toxicity had not been previously assessed. The drug was injected to 120 persons with severe immune depletion (over 50% of patients died during the trial). The promoters refuse to release any further details about the drug, wich does not appear to answer any genuine public health concerns in the Ivory Coast.

All biological tests connected with the trial were carried out by CEDRES, a laboratory funded by the French government agency in charge of international aid, with a view to turning the largest possibal profit. When this became publicly known, a scandal ensued ; eventually, a new manager of CEDRES was appointed. Nevertheless, Mr. Kadio (Ivory Coast), the main investigator of the trial, is likely to become chairman of the next int ernational conference on AIDS in Africa.

When a trial is conducted in a country where access to health care is restricted, it must form part of a broader policy designed to make health care more widely available in that country. It is unethical to conduct a trial without taking steps to ensure that the local population will have the easiest possible access to the drug being tested, should the trial prove its effectiveness.

Such is the issue raised by ANRS 049a, a clinical trial jointly conducted by investigators from France, the Ivory Coast, and Burkina-Faso, whose purpose is to study the tolerance of AZT when given to women in late pregnancy. The same problem is raised by a trial conducted by the CDC in the Ivory Coast, whose purpose is to study the effectiveness of AZT in reducing the rate of mother-to-infant transmission of HIV. AZT is not available either in the Ivory Coast or in Burkina-Faso, which raises the question of the attitude the promoters will adopt once those clinical trials are over.

All clinical trials must be conducted in a spirit of respect for the patients who choose to participate in it. Thus, they must have been approved in advance by an independent local ethics committee. That rule was not complied with by the promoters of ANRS WO63, which focuses on the effectiveness in the Ivory Coast of Bactrim as a prophylactic against opportunistic infections in persons with a CD4 count of less than 200.

In 1994, an informal nine-member committee was set up by the Ivory Coast AIDS programming agency ; no regulations concerning that committee were issued by the local Ministry of Health. Soon, serious problems arose, as a result of which, on May 25th, 1995, the Ivory Coast Ministry of Health and Welfare issued decree #255MSPAS/CAB, which officially set up a twelve-member Ethics Committee.In spite of this, it was the informal committee which, two days later, examined the clinical trial planned by ANRS; only two of its members were present. A decision favourable to the trial was reached at that "meeting" ; under the circumstances, it must however be considered as absolutely worthless.

All clinicals trials must be conducted in a spirit of close cooperation with local groups representing HIV-infected persons In September 1995, Jean-Paul Levy, manager of ANRS ( French Agency for AIDS Research) claimed to have no contact in Africa with persons other than government representatives and high-ranking public officials. On September 20th, 1995, he was publicly questioned by Act Up-Paris regarding the deficiencies of the research carried out by ANRS in Africa. In April 1996, he spent a long time disucssing AIDS-related issues with "Lumiere-Action", an organization of Ivory Coast residents with HIV/AIDS. Formal procedures are being evolved to ensure that local AIDS organizations are consulted each time a clinical trail is about to be conduct in Africa.

Special attention must be given to the free, informed and explicit consent required of all participants in clinical trials, as well as to the guarantees on which it rests Consent can only be ghiven as a result of an individual interview conducted in the language best undertsood by the patient. A written text, aiming at maximum clarity and approved by local organizations of people with HIV/AIDS is absolutely necessary.

In December 1995, the ANRS disclosed plans for a clinical trial on neurosyphillis in HIV-infected persons to be conducted in Mozambique. A written text did not seem necessary to the investigators; while patients were to undergo two lumbar punctures, no plans had been made to inform the volunteers about that procedure, and no attempt had been made to decide wether communication with the patients should take place in Portuguese or in the vernacular! A group of five French AIDS organizations, including Act Up-Paris, complained to the ethics in charge of the trial and demanded alterations which have since been carried out.

More broadly speaking, all the rules usually observed in developed countries must be followed as well in developing countries. On May 30th, 1996, the ANRS disclosed plans for its latest clinical trial in Africa. Its purpose is to study the effectiveness of Bactrim(R) as a prophylaxis against opportunistic infections in persons with CD4 counts of less than 200, in Senegal. Many problems surround that trial. Medical care will be provided toatients enrolled in the trial according to guidelines laid out by the Senegalese Ministry of Health. The trouble is that those guidelines recommend the use of a number of basic drugs mentioned on an official list, which does not include any treatments for CMV and KS, to mention only two opportunistic diseases. This tends to suggest that patients enrolled in the trial will not receive appropriate care should tehy need drugs that do not appear on the official list.

According to Mr Coulaud, an investigator in charge of the trial, " there is no known cure for KS and CMV is rare in Africa. On top of that, it would no do to upset the balance maintained by the Senegalese Ministry of Health. It would be wrong to allow health care providers and patients to form habits which might encourage them to ask embarassing questions ". Act Up-Paris recently sent one of its members to Dakar, Senegal, to interview AIDS organizations and investigators on that topic.

For more information, see ACT UP/Paris

Back to ACT UP/Paris dossier index

Back to Vancouver Index