Transforming Practice through Activism

May 6, 2001

Jacinto, a thirty-nine-year-old AIDS patient at the public Hospital del Salvador in Santiago, suffered an attack of herpes zoster during the winter of 2000. Although rarely serious, the painful condition, also known as "shingles," is common among people with HIV/AIDS. The nurse in charge of the HIV program at the hospital assured him that acyclovir or an equivalent was readily available at the hospital pharmacy to treat the outbreak. "I arranged that purchase myself, so I know it's in stock," she told him. When Jacinto took the prescription to be filled, however, the pharmacist said no acyclovir remained. He offered no explanation and had no information on when the situation might change.

Jacinto sought help from the staff of an HIV prevention and support organization, Corporación Chilena de Prevención del SIDA, where he volunteered (and which I directed for nearly a decade). Rather than look for an alternative source for the drug, we decided to press the issue with the hospital. A staff advocate advised Jacinto to return the next day and insist that the pharmacist give him the drug. If he was denied again, he was to write down the name of the hospital pharmacist and the date and time on the prescription form, and ask the pharmacist to sign it as confirmation. If that failed, Jacinto could ask for the hospital complaint book.

Fortunately, these escalations were unnecessary. Jacinto made clear to the pharmacist the steps he was going to take, and the missing acyclovir finally appeared. "I insisted and had an organization backing me," Jacinto recalls. "But a lot of people just give up."

There is no way of knowing whether Jacinto was the victim a simple mix-up, staff indifference, a shortage of drugs, or outright discrimination against him for his HIV status. Such problems plaguing Chile's health care system are not exclusive to the HIV/AIDS program--nor are the frustrations they engender. "Many of the people we counsel are already beaten down by everything that has happened to them," explains Elena Droguett, a 70 year-old caseworker who started out as the secretary of a local AIDS organization and now works for the Fundación CIPRESS in Santiago. "They don't have the energy or the spirit to make demands on the hospital or its staff. They want to get out as fast as they can."

Similar tales of bureaucracy, scarcity, and discrimination are repeated thousands of times throughout Chile's troubled public health service. While some "rights" to health care may theoretically exist in Chile, such as free treatment for HIV-related illnesses, actually receiving these services is far from automatic. Whether Jacinto was in fact the victim of HIV-related discrimination, simple incompetence, or a systemic shortage, his right to the treatment he needed was violated. Jacinto's announced intentions threatened to make the facts visible. By insisting that individual staff members assume responsibility for their actions--a technique borrowed from the human rights field--he made the refusal of treatment potentially costly to all concerned.

Droguett says she and her colleagues always believed they were defending people's human rights in their advocacy and support work. But only after hearing Argentine lawyer Susana Chiarotti from the Centro Latinoamericano de los Derechos Humanos de la Mujer describe their human rights approach during a seminar talk in 1999 did they realize that human rights advocacy could provide specific methods for improving health care delivery for their clients. Chiarotti explained that women's groups in Latin America have been taking advantage of the international agreements that emerged from UN conferences, such as the International Conference on Population and Development in Cairo in 1994 and the Fourth World Conference on Women in Beijing in 1995, to monitor and fight unjust health policies.

Chile is now awash in human rights-related court cases--including more than 250 against former dictator Augusto Pinochet--based on information carefully compiled over the years in which no local court would grant even a habeas corpus writ. These data were assembled by groups offering direct support and services to the people affected by political repression: lawyers, doctors, psychologists, social workers, and support groups. "In Chile we have a long history of human rights work because of Pinochet and the dictatorship," says Droguett. "But we didn't realize that these same techniques could be used to break down barriers to health care and build a case for structural changes." The human rights-centered approach involves identifying an entitlement and then patiently insisting that it be fulfilled. When the system breaks down, those affected are encouraged to document every detail in the process. "We learned from the human rights movement that a key element of any complaint or public criticism is having unassailable facts of specific instances," says psychologist Valeria García, a long-time health activist in her neighborhood in the southern Santiago shantytowns. "It isn't enough to say, 'These things are happening.' You have to say when, where, what, and who was involved. And you have to get it right."

Jacinto's story illustrates how individuals can learn to make effective demands on institutions unused to being held accountable for respecting people's rights. But the case-by-case resolution of patients' treatment problems does not in itself address the issue of chronic shortages. When there are not enough drugs to go around, arbitrary decisions about who receives them are inevitable. Those better able to raise the cost of refusal will be more likely to succeed in forcing the system to respond to their needs; however, as activists seeking the well-being of our clients, we who utilize human rights language and methods at the case-by-case level are aware that each "success" for one client implies that someone else will be deprived. The next step must be to push for incorporation of patient benefits in an explicit set of guarantees, based on the system's capacity to provide them.

The current government's plan for broad health-sector reform, including a package of patients' rights to improved services, provides an opportunity in this regard. Despite considerable increases in health spending since the restoration of democracy in 1990, Chile's public health system has not detected increased satisfaction among users. This fact has obvious political implications, and government leaders are interested in finding ways to transform practices, including institutional culture, to achieve better results from the budget increases. By illuminating and exposing arbitrariness and inconsistency in current practices, and by patiently placing demands on the system in one case after another, patient advocates believe we can build pressure for change. At a minimum, increasing the number and frequency of queries and complaints is likely to generate pressure throughout the system for more resources.

The human rights approach to quality of care is a promising strategy for improving the beleaguered health care system in Chile and for paving the way for individuals to take positive action. Activists will have to turn their efforts in pursuit of incremental gains or individual triumphs into solid data for policy reform. In the systematic promotion and defense of a person's right to adequate health care, Chilean activists have a multitude of opportunities both to require health care institutions to carry out their promises and to identify what new commitments can and should be made.