By all accounts, the most powerful driving force behind expanding access to antiretroviral treatment in Latin America and the Caribbean has been the activism of people living with HIV/AIDS. Groups of so-called PLWAs have mobilized public opinion and influenced policymakers through actions ranging from street demonstrations and purchasing full-page newspaper ads to domestic and international legal maneuvers.
The story of Panama's Association for the Welfare and Dignity of People with AIDS (PROBIDSIDA) illustrates this. In 1997, a year after HAART became available, a small group of AIDS activists appealed to Panama's Ministry of Health and Social Security Administration to supply antiretro-viral drugs to HIV/AIDS patients.
"We held multiple meetings in both agencies, but the negotiations failed," recalls Orlando Quintero, a Panama City physician who is now PROBIDSIDA's executive director. The group then filed two complaints in Panama's Supreme Court, the first in November 1998 and an administrative appeal in May 1999. Both were rejected. A day after the second rejection, eight group members blocked the main street in front of Panama City's Social Security Hospital, effectively closing off the area for 12 hours.
"The whole thing was followed close-up and live by the media," Quintero recalls. "Before the action, we had sought the support of unions, teachers, doctors and other groups. Two days later, the Panamanian Social Security Administration approved antiretroviral treatment, and by October it was giving it to all those insured. By 2002, the Ministry of Health was providing it, too. Today 100 percent of the insured—about 1,400 people—are covered, but only 60 percent of the uninsured. But this year, the ministry is raising its budget for the uninsured to $3 million."
Panama's AIDS activists were neither the first nor the last to use such tactics. In countries from the Dominican Republic and Honduras to Argentina and Bolivia, people living with HIV/AIDS have mobilized to demand their rights as citizens, including freedom from discrimination and better health care. Activists in 10 countries have taken their cases to the Inter-American Court of Human Rights, winning rulings in their favor in every instance.
Carol Vlassoff, head of PAHO's HIV/AIDS program, says: "In many ways, HIV/AIDS has led the way for civil society to get involved in other health issues. There's no doubt that the tremendous pressure from these NGOs is behind the new consensus that antiretroviral treatment should be made available to everyone who needs it, whether they live in rich or poor countries. It's a public health imperative, but it's also a moral issue, and the NGOs have been critical to raising public awareness of this."