Quote:
Still Fighting HIV Stigma After 30 Years
Abstract
At a recent two-day symposium on HIV/AIDS and human rights in the Caribbean, health officials expressed frustration that societies as small and highly personalized as those in the region continue to struggle with AIDS stigma and discrimination. The symposium was organized by the University of the West Indies in collaboration with the Pan Caribbean Partnership Against HIV and AIDS. HIV-associated stigma is linked to long-held prejudices and the rejection of what is considered “abnormal sexual behavior and wrongful sexual orientation,” said Dr. Ernest Massiah, director of UNAIDS’ Caribbean Regional Support Team. “It is precisely these stigmas that threaten the public’s health. They prevent people from getting tested, getting and sharing their test result with others, and from seeking treatment, if needed,” he said. “Unrecognized and untreated HIV can spread. In 2010, stigma and prejudice should have no place in Caribbean societies,” said Massiah. Across the region, women comprise half of all HIV cases, and in some countries they account for nearly 60 percent of cases. HIV now disproportionately affects young women, men who have sex with men, transgendered persons, and sex workers, and it crosses all ethnic, racial, and class boundaries, said Massiah. “And, there are still British colonial laws in place that criminalize sexual behaviors, reinforcing stigmas and making it difficult to respond comprehensively to HIV,” Massiah noted. Barbados acting Prime Minister Freundel Stuart said a better understanding of HIV/AIDS could lead to more sympathetic treatment of persons living with the disease. In addition, he called for continued public HIV/AIDS education programs. “The fact that infected persons are not only living longer but also seem to be leading normal lives raises necessarily and understandably the issue of the rights to the enjoyment of which these persons are entitled,” said Stuart.
Source
http://www.ips.org/
Date of Publication
09/16/2010
Author
Peter Richards
Quote:
(CNN) -- June 5, 1981. The U.S. Centers for Disease Control and Prevention issued its first warning about a rare pneumonia called pneumocystis circulating among a small group of young gay men.
Unrealized at the time, it was the official beginning of the HIV/AIDS epidemic.
Dr. Michael Gottlieb, then a 33-year-old immunologist at the University of California Los Angeles, treated one of the first patients, a 31-year-old gay male with pneumocystis.
"In those days patients were essentially given a terminal diagnosis," Gottlieb says. "We had no medication whatsoever. At the very beginning we did not even know it was viral infection."
In 1982, the CDC coined the term AIDS, for Acquired Immune Deficiency Syndrome, but the cause was still unknown. In 1983, the virus was finally isolated and given a name: Human Immunodeficiency Virus or HIV.
At that time there were no treatments. Patients died quickly. Today, with the development of antiretroviral drugs and a much greater understanding of the disease, people who contract HIV in the United States are living decades.
The drugs carry side effects, some extremely debilitating, but because of those drugs, a small number of long-term survivors are experiencing what they couldn't have imagined when they got their diagnosis in the epidemic's early days -- middle age.
"The first antiretrovirals were introduced in 1987; that gave us a glimmer of hope," Gottlieb says, describing drugs that disrupted the virus' ability to multiply in the body.
Dr. Michael Gottlieb, then a 33-year old immunologist at the University of California Los Angeles, treated one of the first patients.
"In 1996, the advent of the protease inhibitor and the so-called cocktail changed the prognosis for HIV, and that therapy has required considerable refinement, because even that therapy had complications from the drugs themselves that caused a lot of damage -- lasting damage -- and many of those long-term survivors suffered and continue to suffer the complications of the earlier medication."
Jim Chud is one of those long-term survivors. The 53-year-old AIDS activist says he was a 20-year old bisexual athlete at Yale University when he contracted the virus. Chud thinks it was 1977 when he got sick. He was leading a double life: He had a steady girlfriend, but took weekend visits to the bathhouses in New York.
By 1985, Chud was living in Washington. Having watched many of his friends get sick and die, Chud was at the head of the line when the new HIV test arrived. By 1989 he had full-blown AIDS -- the most advanced stages of HIV. "I thought I was going to die," he says. "I didn't think I would see 30."
He started volunteering for drug trials. One, a National Institutes of Health study looking at the combination of drugs AZT and DDC, left him paralyzed for four months. He has had more than 30 surgeries on his spine and neck.
In 1999, Chud contracted a fungal infection in his sinuses that spread to his brain. There were more toxic drugs and six more surgeries. Over the years he's been on 12 different HIV drugs. Today he's disabled and along with HIV medications takes prescriptions to battle pain, infections and depression.
His concern? That HIV has vanished from the spotlight. "People are still dying, and to think that doesn't happen anymore and isn't newsworthy is a problem. Kids aren't getting the message today that we got many years ago that this is a fatal disease and it's not to be taken lightly."
Cleve Jones has never taken the disease lightly. The 55-year-old human rights activist and founder of the NAMES Project AIDS Memorial Quilt thinks he contracted the virus in the winter of 1978-79. Jones was living in San Francisco, California, and was working for pioneer gay rights leader and San Francisco Supervisor Harvey Milk. AIDS was already exacting a heavy toll on the community. After the HIV test became available in spring 1985, Jones received his official diagnosis.
"I was living with the virus in my body for a full 10 years before treatment became available," he says.
He participated in the first clinical trial looking at multiple drugs, now called combination therapy. But back then the drugs didn't work for very long. "The science was pretty primitive then," he says. "I was always looking a year ahead, two to three years ahead into the research pipeline, knowing that whatever combination was working for me at any particular moment -- the odds were good it wouldn't be working a few months later."
Today, the prognosis is much better. While other countries continue to struggle to manage the disease, in the United States a diagnosis is no longer an automatic death sentence. But Jones says there aren't many long-term survivors left. "It's bittersweet for us. There is nobody left in my life today that knew me when I was young."
When he looks back over the last 30-plus years, Jones can acknowledge how far the fight has come. "I still hope for an outright cure. I still hope for a vaccine. But it took a very long time and there were many dark periods where I felt the world had waited too long to respond."
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