30 Years Later, Outlook Improves for HIV/AIDS Patients, But Stigma Remains

More people were worried about getting H1N1, or swine flu, last year than they did HIV/AIDS. And that’s a good thing – sort of.

It’s good because the virus is no longer a mystery. It’s bad because the rate of new infections has remained somewhat constant, said Dennis Torres, director of healthcare programs for Family Centers in Stamford. Yet both points are worth considering because Sunday marks the 30th anniversary of when the Centers for Disease Control first acknowledged the virus in the U.S., he said.

“It doesn’t have the urgency it did 30 years ago,” Torres said. “We were in crisis mode then. People were dying left and right. No one knew how to stop it.

In fact, in 1981, it wasn’t even called AIDS. It was called GRID, or gay-related immune deficiency. In time, people learned HIV/AIDS could infect anyone if proper precautions weren’t taken.

The Human Immunodeficiency Virus, HIV, is a chronic infectious disease that can lead to Acquired Immune Deficiency Syndrome, AIDS. It is transmitted through blood-to-blood contact, unprotected sex, and from mother to baby during pregnancy, delivery or breastfeeding.

Yet although three decades have passed, there is still a great deal of shame associated with the virus.

“If it was cancer, people would seem okay with it, but when you say you have HIV people are still shocked,” said Brian, who spoke with Patch on condition that his real name not be used to protect his privacy. “It’s still stigmatized. And that can be spiritually challenging — it can send you into the darkness spiritually.”

Brian, a Stamford CARES client, is now approaching his 22nd year with the virus.  Brian contracted HIV through intravenous drugs.

“The stigma has not changed with the virus for some. There are family members who will shun someone with AIDS,” Torres said. “The diagnosis still carries a moral judgment.”

Last year, President Barack Obama and First Lady Michelle Obama were tested for HIV in an effort to help erase the stigma. The recently formed National Council on HIV/AIDS works to educate people about prevention and treatment.

Today, retroviral drugs can help the body keep HIV at bay and resist AIDS; it’s become more like a chronic illness than a terminal illness.

Still there is no vaccine or cure for AIDS. Those infected with HIV are infected for life. And so Brian must strictly adhere to his regimen of medicines.

“It’s still a life-changing event,” Torres said. “I remember people running out into the streets screaming if they learned they were positive [for HIV]. People still break down, but it’s different.”

Torres began went to work in a Connecticut hospice in the early 1990s. Most of his patients had HIV/AIDS.

About 40,000 people are infected annually. Indeed the infection rate hasn’t changed much in the past 30 years. In fact, there are probably many more undiagnosed people. People resist testing because they are afraid of the results or feel ashamed,  Bill Brucker, communications director for Family Centers, said.

Today, there are more people living with HIV/AIDS than ever before. As of 2009, the most recent year for statistics, 10,574 people in Connecticut have HIV/AIDS. This compares to 732,514 people in the United States living with HIV/AIDS.

“The prevalence of HIV/AIDS has gone up because less people are dying,” Torres said

Throughout the state, the virus affects African Americans and Hispanics disproportionally. These two demographics represent 20 percent of Connecticut’s population, but they comprise 64 percent of all HIV/AIDS cases, according to Yale University Center for Interdisciplinary Research on AIDS.

The highest numbers still occur in the state’s largest cities, including Stamford.

Since 1981, AIDS has killed an estimated 450,000 people nationwide. More than 25 million have died from it worldwide.

For Brian, HIV made him realize life's value.

“I was an intravenous drug user. It [HIV] came with the lifestyle. But it is a blessing in disguise. I want to live,” Brian said. “The virus is undetected in my body, but it scared me straight.”