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
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
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:
- the 1970 law be repealed;
- national-scale prevention campaigns, specific to I.V drug users be
set up, mainly in media addressed to the general public;
- syringe/needle dispensers be largely installed;
- prevention and needle exchange programs be started in prisons;
- a decent access to care be available to I.V drug users in all health
- substitution programs be increased;
- medically assisted heroin distribution be set up.
Inadequacy of the French Ministry of Education's
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
- 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:
- staff working in the public education system be trained to conduct
AIDS prevention activities, so that each school may have its own team of
AIDS educators. This training must be provided both to new teachers entering
the public education system and to those already working in it.
- all schools be required by the ministry to allow students access to
comprehensive and unbiased information about AIDS and related lifestyle
issues, on the basis of one hour per week. This requires the development
of a curriculum addressing the psychological needs of each age group. Specific
and explicit information concerning the needs of each target population
(eg. people having heterosexual/homosexual practices, women, IV drug users,
etc...) must be given by the teachers. - that condoms, lubricant and dental
dams be made accessible and visible in all schools to all students aged
10 and more.
- the ministry implement AIDS information campaigns targeting all staff
working in the public education system (including, but not limited to, teaching
- the right of all students and staff to absolute confidentiality regarding
HIV and related issues be recognized at last.
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
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:
- that the 1992 law on health care for incarcerated persons be immediately
- HIV prevention schemes, including free condom and needle distribution,
be carried out in French prisons;
- all incarerated persons with severe health problems be released, and
that alternative sentences be provided for them.
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