Cuba’s HIV-Positive Want Respect
By DALIA ACOSTA
HAVANA TIMES, April 9 (IPS) – Over 20 years after the diagnosis of the first cases of AIDS in Cuba, HIV-positive persons and those who work with them or are involved in the issue on the island are attempting to drop the use of terms like tolerance and acceptance, and speak instead of respect.
“When we speak of tolerance, or acceptance, one party always has the power to decide. Respect is something else: I consider myself equal to you; I respect you, and you respect me. People should respect one another,” said Carlos Aragonés, national coordinator of the Cuban AIDS Prevention Group (GPSIDA).
“Who is in a position to decide whether to accept or tolerate another person?” said Aragones at the end of a meeting of HIV-positive people, health personnel and HIV/AIDS experts from every Cuban province.
“AIDS is like a mechanism with many interconnected cogwheels. If any one of them fails, it’s a problem,” Aragones, one of the founders of GPSIDA, which was created in the late 1980s and now has some 315 members and 500 associates – both HIV-positive and negative – all over the island, told IPS.
Aragones thus described as challenges that all have equal priority in Cuba issues like the link between AIDS and tuberculosis, couples where one partner is HIV-positive, strategies for preventing transmission between men who have sex with men, women and HIV, information in the media, and what messages should be sent to the population, and how.
Nancy Mora, another national coordinator of GPSIDA, called for greater on-going support for newly diagnosed cases, once people have taken the course on “Learning to Live with HIV.”
“No one learns to live with HIV in a week or even in a couple of months,” she said.
These and other topics were discussed at the Scientific Meeting on Integrated Care for HIV/AIDS and the Sixth National GPSIDA Scientific Event, held from Mar. 31 to Apr. 4 at the former Santiago de las Vegas Hospital, now a centre for integrated HIV/AIDS care, on the outskirts of Havana.
“Out of 177 presentations, 145 reported the results of experiences in different communities across the country,” Jorge Campos, another national coordinator for GPSIDA, told IPS.
Cuba has a relatively low rate of HIV infection. It reported 10,454 cases between 1986 and 2008, indicating a prevalence of 0.1 percent of the population aged 15-49, and 0.05 percent in the 15-24 age range. Out of the total number of cases, 1,847 had died by the end of 2008, according to official figures.
Men are most affected by the epidemic in this Caribbean island nation, accounting for 80 percent of cases, out of which 85 percent are men who have sex with men. More than 4,000 people are receiving antiretroviral therapy, with drugs that are produced locally and contributions from the Global Fund to Fight AIDS, Tuberculosis and Malaria.
The messages from TV carry weight
In Latin American culture, “television is regarded as holy writ, so people working in the media have to be very careful to communicate the right message, because most people take it for absolute truth,” Aragones said, referring to one of the meeting’s discussion topics.
According to television director Jorge Perez, public interest messages broadcast by Cuban state television should take into account the results of studies of audience profiles, and be based on a deeper knowledge of the reality experienced by HIV-positive people on the island.
Too little information is reaching the public about scientific progress, the results of antiretroviral treatment, the increase in life expectancy, improvements in quality of life of HIV-positive persons, and changes in the Cuban health system toward decentralization of care and medical services.
Decentralization and integration of health care is regarded as one of the current challenges, and was discussed at length at the scientific meeting. The idea is for HIV/AIDS care, which for years has been provided centrally at the Pedro Kourí Institute of Tropical Medicine in Havana, to be made available in community health centers.
The new system, which also includes providing antiretroviral medication through the country’s network of pharmacies, has generated considerable concern among HIV-positive persons. However, studies have shown that pharmacy personnel are highly motivated to take on the new challenge.
Doubts expressed ranged from the capabilities of medical personnel in the primary care system to provide proper ongoing monitoring and care, to whether taking care into the community is compatible with the right to confidentiality of people who do not want their HIV-positive status to be publicly known.
But the arguments for decentralization are gaining ground as the number of HIV-positive persons is growing, and providing services nationwide can ensure more efficient and generalized care. In addition, it may contribute to combating the stigma attached to the illness.
“AIDS can no longer be regarded as a different kind of disease. HIV-positive people can go to any of the links in the health system, and they must be treated the same as any other person. This process must begin to be seen as normal,” said Dr. Jorge Perez Avila.