SGI Quarterly October, 2000

Venezuela: Fighting for the Right to Medical Treatment

By Edgar Carrasco, Director General of ACCSI

In the mid-1990s a ray of hope broke in the gloom of the AIDS crisis. Doctors began to discover that combinations of antiretroviral (ARV) drugs could effectively treat people infected by HIV.

Initially for the majority of Venezuelans, however, access to these new possibilities remained severely limited. Our organization, Accion Ciudadana Contra el SIDA (ACCSI), was determined to change that and ensure that antiretroviral therapies, medical tests and treatments for opportunistic infections be made available to all people living with HIV and AIDS (PWAs) in Venezuela. The lack of a unified health system in our country means that health services are provided through different governmental systems such as the social security system, the Ministry of Health and the Ministry of Defense. Researching the medical care that each provided, we found that all were inadequate, and that treatment reached only a small percentage of the Venezuelan population. The social security system, the most promising of these, only supplied transcriptase inhibitors (a type of ARV drug) very irregularly, and its program did not include protease inhibitors, medical tests or medicine for opportunistic infections.

After initial plans to challenge the social security system in court were frustrated, we decided to launch a constitutional appeal for protection--with the combined support and action of health professionals, lawyers and AIDS activists--for 11 people affiliated to the social security system.

The appeal was based on the deficiencies in the provision of treatment, the irregular supply of ARV transcriptase inhibitors, and the necessity to supply the new protease inhibitors, medical tests and medicine for opportunistic infections. Significantly, we claimed the rights to health, access to science and technology, social security, and the right to nondiscrimination, as guaranteed by the national constitution, the American Convention on Human Rights, the International Covenant on Economic, Social and Cultural Rights, and other conventions signed and ratified by the Venezuelan government. We also referred to the Universal Declaration of Human Rights.

In May 1997, the court recognized the rights of the 11 claimants, and ruled that the social security system should supply regular and constant medication. Following this decision, we pursued a further five lawsuits, winning the right to medical treatment for another 300 people.

By August 1998, the social security system established a broad program for affiliated PWAs. This now covers some 2,200 people.

Further Legal Action

We next decided to defend the rights of four members of the national armed forces to adequate medical attention and ARV treatment, at least during the period of compulsory military service. This claim was also based on the national constitution and international treaties.

In January 1998 the court again ruled in favor of the four claimants. Since then, the armed forces have provided treatment to all soldiers infected during their compulsory service.

Victory for PWAs

These court rulings stimulated great awareness among PWAs of their human rights, and a new confidence in the judicial system. Between 1998 and 2000 we brought a large number of appeals against the Ministry of Health.

Eventually the Supreme Court of Venezuela ruled in the collective interest, meaning that it recognized the right of all Venezuelan PWAs to comprehensive treatment. It ruled that the rights to health, life and access to science and technology were closely linked in this case; that the right to access to achievements in science and technology affords those suffering from HIV/AIDS the right to health, the possibility of a longer life and the future possibility of a cure.

1. Reverse transcriptase enables HIV to change its genetic material so it can get inside the cell nucleus 2. where it becomes part of the cell's genetic material and makes long chains of proteins. The HIV enzyme protease is like chemical "scissors" that cut these into short chains. 3. Short protein chains are needed to form active new copies of HIV. Protease inhibitors gum up the "scissors" 4. preventing the chains from being cut. 5. As a result, the new copies of HIV are empty and can't infect new cells. [International Association of Physicians in AIDS Care]

This experience taught us that the lack of political commitment to effectively address AIDS and provide care for PWAs puts the onus on civil society to make use of the judicial system to obtain these rights. The judicial system, especially the Supreme Court of Justice, proved a great ally in the struggle to have the rights of PWAs recognized.

Our experience proved that international treaties are powerful instruments to enforce the human rights of PWAs and that, in a struggle of this nature, it is essential to unite the support of lawyers, civil society and PWAs, to ensure that legislation is effectively implemented.

In our country, these legal actions by PWAs serve as an example for groups with different chronic and congenital illnesses. Recently, our organization introduced judicial action to seek protection and medical care for children with heart problems.