ACTing UP for Treatment Access in Latin America
At this point I would like to present some examples of a few "best case" scenarios of access to antiretroviral access in the region. This is by no means a complete list. Agua Buena participated in the actions described in Costa Rica, Panamá and Honduras, but not in the situation described regarding Brazil.
The first case in point is Costa Rica. In 1995 and 1996 I was working in an out-patient mental health clinic in San José. People would come to the clinic for psychological attention in a relatively advanced stage of AIDS. Most of them didn't live very long. In those days, the Costa Rican government was not even providing AZT. After finding out about the existence of antiretroviral drugs late in 1996, after the Vancouver World AIDS Conference, people with AIDS in Costa Rica formed an official coalition and began meeting with officials from the "Caja de Seguro Social," which provides universal health care in Costa Rica.
But after more than six months passed, it was apparent that negotiations were going nowhere, and the PWA group made the decision to file a lawsuit in the country's Constitutional Court. The lawsuit, filed by four people living with AIDS, was decided in their favor on September 27th, 1997. And the Court ordered the Seguro Social to immediately begin providing antiretroviral medications. In 1997, there were about 300 people who needed the medications, and the Seguro Social complied very rapidly with the Court's ruling. Now, in 2003, there are about 1,450 people receiving antiretroviral therapy. Thus it was advocacy resulting in legal actions by people living with HIV/AIDS which led to the provision of triple therapy in Costa Rica.
In Panamá, the process was similar but there were important differences. I visited Panamá early in 1998 after Norma and Orlando Quintero there asked me to come and explain what had happened in Costa Rica. Later in 1998, activists in Panamá did file a lawsuit, but the Supreme Court there threw out the case on technical grounds. This outraged the plaintiffs and, led by the Quinteros but with perhaps 20 additional people participating, there was a demonstration early in 1999 which closed one of the main streets in Panamá City. There was massive coverage of this demonstration by the media. A few days after the demonstration the "Seguro Social" in Panamá gave in, and agreed to begin provided antiretroviral medications. There are now 1,200 people who receive them there.
In this case, the methodology involved an impulsive community-based action, which involved some risks but paid off in a quick decision by the Seguro Social in Panamá. So I think that the Quinteros were aware that the Social Security system had the economic resources available to cover what at that time was a relatively number of PLWHAs, and that if they pushed the right buttons, that they had a chance to win.
Panamá, however, like most of the other countries in the region, has a divided health care system. Wealthier people who work for large companies are able to become part of the "Seguro Social" through their employers. But poorer people, such as laborers, agricultural workers, domestic workers and street vendors, cannot affiliate with the Seguro Social and they only receive emergency health care through the Ministry of Health. The Ministry of Health, however, has recently begun to provide antiretroviral therapy, but perhaps to only about 100 people at the moment.
I have visited Honduras seven times in the past four years. The struggle there has been a difficult one, and is far from over. But there was a key moment and it involved a courageous woman living with HIV/AIDS named Rosa Gonzales who was willing to go public. During a demonstration held outside of the Honduran Congress in September of 2001, Rosa was introduced to a sympathetic Congressman named Marco Antonio Sosa, who was himself a physician. At that time no one in Honduras was receiving antiretroviral medications.
Dr. Sosa agreed that he would support a motion to allow Rosa to address the Congress for 15 minutes, a few days later, and she agreed to do it. She gave an impassioned and dramatic speech about her life as a mother living with HIV/AIDS, and within a few days the Honduran Congress voted a special budget (from monies that were available) of $190,000 for an emergency purchase of antiretrovirals. Since the Accelerated Access negotiations (UNAIDS pilot rx project -- of mixed success -- in a handful of countries, of which Honduras is one) had been carried out just a few months earlier in Honduras, the price of treatment has dropped dramatically for some cocktails. Thus the $190,000 would cover treatment for about 150 people for one year.
Unfortunately, due to the usual bureaucratic and political maneuvers, it would take another 8 months before any PWAs would begin receiving any treatment from this "emergency" fund. Part of the problem was that elections occurred late in 2001, and a whole new Congress and Health Ministry was installed.
At the moment, a total of about 700 Hondurans are receiving antiretroviral medications, but this is out of a total of 4,800 who are estimated to need treatment. So Rosa's action created a precedent and has motivated people to become more active. But progress is still extremely slow. (Ironically, even after the approval of a $42 million Global Fund grant to Honduras.)
Richard Stern is Executive Director of the Agua Buena Human Rights Foundation in San José, Costa Rica.