International Seminar on Access to Treatment for HIV in Developing Countries  5-6 June 1998 London, UK

Dr. Victor Croquer
Citizen's Action Against AIDS (ACCSI)
Caracas, Venezuela

We knew it was not easy
We knew it has never been done before
But we also knew that we had to do something... and we knew that we had the right to do it!

In Venezuela, violation of human rights, discrimination and stigmatisation are part of our society. Even today, HIV/AIDS is considered specially reserved to homosexuals as a health condition deserved for immoral behaviour. Most Venezuelan inhabitants are living under critical poverty, which is closely associated to lack of education. In addition, around 500,000 persons have been diagnosed HIV positive. Being here with you gives to all of us the opportunity to hear from the direct representatives the real situation of HIV/AIDS of each country represented and what they are doing regarding the epidemic, and on the other hand, will allow us to learn from each othersí experiences.

ACCSI has developed a programme for assistance, support and legal advice for PLHA. One of the most relevant activities that we have been working on since last year is attending more than 400 different cases related to access to treatment for PLHA against the INSTITUTO VENEZOLANO DE LOS SEGUROS SOCIALES (IVSS), which is one of the local government offices in charge of health issues and constitutes the Social Security System.

Once we were aware that IVSS was not complying with the constitutional and legal obligations to provide health assistance by providing antiretroviral medications to PLHA, we concluded that we had to do something. Recently the National Congress passed the Ley Organica Sobre Derechos y Garantias Constitucionales, which is a law that creates a constitutional protection of human rights. This law contains the procedures that must be followed by the courts.

The first law suit was submitted which alleged human rights violations, as defined under Constitutional Protection, were taking place of thirty people, including men, women and children. Notwithstanding the fact that the above law states that the court procedure must be quick, the five judges took more than five months to reach one decision.

Fortunately, the decision recognised that there was infringement of the health, life, education, and labour rights (among others) by the Social Security system. Consequently, the court ordered that the Social Security system provide to every plaintiff the antiretroviral treatment, which includes protease and transcriptase inhibitors, all medications related to opportunistic infections, and the medical examinations that might be required related to their HIV/AIDS status.

But in Venezuela, the decisions regarding constitutional protection will only benefit these particular plaintiffs and for this reason we intend to submit more lawsuits in order to obtain access to treatment on behalf of more than 380 people affiliated with social security system. When we obtained the above mentioned decision, we knew that we still had additional work to do before the Social Security system would comply with the ruling.

After more than six months of lobbying, finally the social security system agreed to purchase all of the medications and last week began the bidding process to obtain the best prices and conditions for such acquisition. Nevertheless, we are still waiting to see what will happen and will be following every step taken by the Social security system until every PLHA obtains his/her medication.

Talking about human rights discrimination and homophobia in Latin America means to talk about people's character, and this reality becomes deeper when looking at the military. But it is in this area where ACCSI obtained another success. November 1997, the Supreme Court in Venezuela ruled against the Ministry of Defence in a lawsuit ACCSI brought charging discrimination, stigmatisation and exclusion of four young soldiers who had been infected with HIV during their military service. In their decision, the Court ordered the Ministry of Defence to provide all medications and exams related to HIV/AIDS and also ordered the Ministry to give the four a life-time maintenance pension.

We requested that these soldiers be reinstated in the military, but this request was denied by the Court, alleging that their HIV positive condition is not compatible with the activities of military personnel. We are taking the necessary steps in order to request that the Human Rights Inter-American Court ask the Military of Defence to recognise their labour rights and allow them to be part of the army.

Nevertheless, this decision is very important because it is the very first time that HIV/AIDS was presented before the Supreme Court of Justice in Venezuela and also the first time that a Latin American Ministry of Defence was required to respect and care for PLHA. In addition, the ruling ordered that the Military had to create and promote educational and prevention campaigns on HIV/AIDS for both military and civil army personnel. The Ministry of Defence was forced to understand that no exception can be made for cases of HIV/AIDS and as such, they are part of the system and must follow the rules.

This decision was so important that the most recent ruling against the Social Security system including some of the language contained in the Ministry of Defence decision, which constitutes the criteria imposed by the Supreme Court. I must confess to you that when we initiated this action, we were afraid that some reprisals, revenge or whatever might occur... but thank God, until now, nothing has happened and our fight has only taken place in the courtroom.

It is important to point out that the Ministry of Defence has not yet complied with the provisions of the sentence and these recognised rights remain on paper and not yet in real life. It has been established that court decisions must be respected and complied with. We are currently preparing documents addressed to international organisations to solicit their assistance in forcing the Ministry of Defence to provide medications and the provisions in the courtsí ruling.

The Social Security system is not the only government office which deals with health care. The Ministry of Health is also obliged to attend and care for affiliated or non-affiliated patients. Since HIV/AIDS does not affect only those person affiliated with the Social Security system, we submitted two months ago a new action against the Ministry of Health. The purpose is the same: access to treatment. The judges are the same as in the earlier cases and we expect the decision will be the same, i.e. the recognition of the rights contained in the Constitution and the provision of ARV treatments. We do not have a result yet but expect one within two months.

We are aware that access to treatment should not be the only concern for PLHA in Venezuela. When people come to our offices, most of them let us know that they will not accept the continuing infringement of their human rights. That is the reason why we also demanded recognition of their dignity, respect and human values. Privacy and confidentiality are constitutional rights that must be observed by everybody.

We are confident that in the near future, we will not have to go to the courts to fight for the constitutional right to access to treatment and other human rights of people affected by HIV/AIDS. Governments have to understand and comply with that obligation and to provide the necessary funds for treatment, prevention and educational campaigns. Nevertheless we believe that things are changing. Some judges became our allies; several employees of the Social Security system support our fight.

As you can see, we have been working hard but we understand that is not enough. Additionally, we have been given several invitations to inform other people about our work and goals.  We are convinced we will win, but this victory will not be complete until we defeat our main enemy: IGNORANCE ... and we will not rest until we win.

Discussion:
The question was asked about whether health care is free in Venezuela. Dr Croquer replied that, ideally care is free for those involved in the social security system. However, the social system budget is limited so few drugs are available. In principle, drugs would be free but the system doesnít work.