- Citizens’ complaints for greater access to drugs are a rapidly growing trend in Latin America.
- The progressive realization of the right to health is a global challenge, not just in Latin America, and involves all stakeholders in the health system.
- While the judicialization for the right to health is imperfect, it can have high human and administrative costs, and is not a substitute for health policy.
November 7, 2013―Janira and Edgar live in Brazil and have more in common than just their nationality. They share a fight against their illnesses and quest for the state to provide to them what is rightfully theirs -- access to medical care. In their view, that includes the provision of medicines for complex treatments.
João Biehl is the co-Director of Princeton University's Program in Global Health and Health Policies. His research explores the social impact of treatment programs on a large scale in resource-poor settings and the role of the judiciary in the administration of public health in Brazil. Janira and Edgar are featured in Dr. Biehl’s presentation during the Third Latin American Symposium on the Right to Health and Health Systems, held in Brasilia earlier this year.
Janira is a domestic worker suffering from a severe heart condition. She needs a heart transplant and to stay healthy while waiting for surgery she needs six different drugs. Five of these drugs are available under the Unified Health System (SUS), but the sixth, a very expensive one, is not. To obtain this medicine the family sought legal assistance from the Public Defender's Office.
A judge ruled in favor of Janira’s family and ordered that the drug be provided at the state’s cost.
Edgar is a bus driver who began working when he was eight and has a hereditary neurological problem. The medicine he needs is not included in the list of drugs that the government provides for free. To afford the medication that helps prevent the loss of his motor skills, Edgar had to take a bank loan, but it didn’t last long and he eventually had to go to court to gain access to this medication.
Edgar and Janira are not alone and citizens’ complaints for greater access to drugs are a rapidly growing trend in Latin America. This was illustrated in Chile, where last May about 5,000 people marched on the capital city, demanding access to medicines for the treatment of high complexity diseases and demanding that the government create a national fund to allow people suffering from terminal and chronic illnesses to have access to expensive drugs that they must otherwise pay for themselves.
"The progressive realization of the right to health is a global challenge, not just in Latin America, and involves all stakeholders in the health system,” said Maria Luisa Escobar, Manager of World Bank Institute Health Sector Practice. “Our approach in the World Bank Institute has emphasized the participation of the different health systems’ actors in order to achieve effective and conducive dialogue around alternative ways to implement a progressive realization of the right to health.”
Judicialization, an Imperfect Process
"The resources used to finance treatment obtained by administrative or judicial paths are indeed lost when the service is discontinued or there is no comprehensive care," Biehl said. He added that the solution "is not to void or render impractical the prosecution, we must instead learn from it, and what's extraordinary about prosecutions for the right to health is that they allow the participation of human voices in the public debate on the right to health."
Prof. Biehl argues that while the judicialization for the right to health is imperfect, it can have high human and administrative costs, and is not a substitute for health policy. It represents an opportunity to understand what is missing in policies and to question how we can systematize these lawsuits in order to meet the urgent needs of all.
The progressive realization of the right to health is a global challenge, not just in Latin America, and involves all stakeholders in the health system.Maria Luisa Escobar, Manager of World Bank Institute Health Sector Practice.Biehl also presented the results of a study conducted in the Brazilian state of Rio Grande do Sul between September 2008 and June 2009, which found that patients seeking access to medication through courts are mostly poor people who are not working. Among these people, the majority was earning less than minimum wage. "These people rely on the public system for both medical care and legal representation. Most of them, about 56%, used legal public defense services," Biehl said.
"We believe that while judges should continue to respond to individual cases, the judiciary should also promote health as a collective right and find strategies to measure and ensure the universal availability of the drugs that the government has a legal responsibility to provide," Biehl said.