It has been more than 30 years since the Centers for Disease Control and Prevention first identified Acquired Immunodeficiency Syndrome (AIDS), a mysterious disease that was killing gay men.
Over the years, scientists learned how to treat Human Immunodeficiency Virus (HIV), the initial illness that leads to AIDS. Since this disease first appeared, they have known how to prevent people from becoming infected: don’t share body fluids by having unprotected sex or sharing hypodermic needles.
Yet, people are still getting HIV. Delaware has the eighth highest rate of HIV infection in the United States, according to the CDC’s National HIV/AIDS Surveillance Report. The state ranks seventh in AIDS cases.
“Every time someone tests positive, my heart breaks,” says Renee Beaman, executive director of Beautiful Gate Outreach, a faith-based center in Wilmington. “With all that we have learned about this disease, no one should become infected.”
Today, the people most likely to get HIV are young, black, gay men, according to Delaware Health and Social Services (DHSS) statistics. While infection rates have fallen steeply among injection drug users, the number of gay men who have the virus is increasing.
[audio:http://www.wdde.org/wp-content/uploads/2013/05/aidsinterview.mp3|titles= WDDE All Things Considered host Joseph Leahy's interview with Delaware AIDS Consortium patient advocate Joe Scarborough.]
“We have been running around for 15 years saying HIV isn’t a death sentence,” says Joe Scarborough, patient advocate for the Delaware AIDS Consortium in Wilmington. “That has taken away a lot of the sense of urgency to prevent getting infected.”
In the vernacular of statistics, men who have sex with men are referred to by the acronym MSM. The 2012 Delaware HIV/AIDS Surveillance Report notes that after a sharp decline, the infection rate for gay men has been increasing steadily over the past decade.
“It is noteworthy that MSM has been resurgent since 1999 and is the highest ranking risk factor for HIV infection in Delaware in 2011 and is at the highest level by percentage since the early 1980’s,” the report says.
Scarborough, 49, has been living with HIV for more than 20 years. His face still shows the vestiges of lipodystrophy, a condition caused by early retroviral drugs in which fat is drawn from the cheeks and deposited in the back or abdomen.
“My generation was horrified by AIDS,” he says. “We have seen people wither away and die. We have been to funerals every month. The younger generation has not.”
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At Beautiful Gate Outreach Center in Wilmington, there is a steady stream of people with HIV who need help. But less money is coming through the door.
In his 20s, he routinely practiced safe sex to prevent getting HIV. He became infected during a momentary lapse with a partner who lied about his status.
Scarborough says that scenario is still common today, especially when inhibitions are blunted by drugs or alcohol.
“A night out drinking and the need for companionship supersedes everything,” he says. “The smartest people in the world get really dumb after a bottle of Jack Daniels.”
Scarborough is concerned that many young gay men believe that getting HIV won’t have a negative impact on their lives, “that they will just take a pill and everything will be OK.”
Although he doesn’t have any side effects from his current medications, many people suffer from fatigue and diarrhea. Some are unable to work.
When Scarborough talks to younger men, he tells them he has suffered socially as a result of his HIV status. On several occasions, dates have walked out of restaurants after he revealed that he is positive.
“You have to hit people where they live,” he says. “Single gay men live in their dating lives.”
At Beautiful Gate, Beaman also has learned to take difficult topics head on. She is a pastor’s wife, a church lady who openly discusses sex, drugs and homosexuality.
When Beautiful Gate opened in 2001 at Bethel AME, the church her husband Silvester serves, there was some initial pushback from the congregation. Most people came around in time, but Beaman wishes there was more support from the faith community for people who are at risk for HIV.
“Many churches don’t know how to talk about sex and homosexuality,” she says. “Meanwhile, people are dying.”
She says education and openness is especially important for black people. Nationwide, African-American men account for 43 percent of HIV infections. In Delaware, that disparity is even greater, with black men representing 62 percent of infections, DHSS figures say.
“The African-American community saw AIDS as a gay, white disease,” she says. “In truth, it is a disease of opportunity. It doesn’t matter what race you are, what gender you are or how old you are.”
The City of Wilmington has been especially hard hit. In New Castle County, 14 percent of the population lives in the city. Yet 42 percent of the people who have HIV or AIDS reside in Wilmington, according to DHSS.
One of them is Irma Giles-Watson, a 57-year-old grandmother who was diagnosed in 1999. She contracted HIV from a boyfriend who abused drugs.
“Nobody is honest about who they are sleeping with,” she says. “It only takes one bad decision.”
Since her diagnosis, Giles-Watson has worked hard to lead a productive life and stay healthy. She met a man who understands her challenges because he has HIV, too. They got married.
She takes three pills a day; her husband takes 23. Sometimes she feels drowsy and her husband gets bouts of diarrhea. But they have learned to deal with the side effects.
“HIV has been life altering for me but my life isn’t over,” she says. “I have grandkids I want to live to see in college.”
Beautiful Gate provides free testing for about 1,500 people a year, in addition to prevention education and help with food, housing and medical care. Screening is fast—results are available in 20 minutes—and readily available at various centers throughout the state.
Still, some people at risk hesitate to be tested because state law does not permit them to remain anonymous, says Darcy Brasure, director of volunteer services for AIDS Delaware, which has offices in Rehoboth Beach, Seaford and Wilmington.
Do-it-yourself testing kits are sold over the counter at drug stores for about $40. People who want to keep their diagnosis a secret are willing to pay the price, he says.
Brasure is concerned that people who test positive may not seek treatment or share their HIV status with sexual partners.
“We don’t know if people who test at home will see their doctors or just sit on that information,” he says.
At the same time, the infection rate for other groups is plummeting. In 1993, 49 percent of HIV/AIDS cases in Delaware were attributed to injection drug use, in which addicts passed the virus by sharing tainted needles.
In 2011, only 6 percent of cases were linked to injecting drugs. Brasure credits New Castle County’s free needle exchange program for the dramatic improvement.
Better prenatal care is making a difference, too, as pregnant woman with HIV are routinely treated with antiretroviral drugs. In 2011, no babies born to mothers with HIV tested positive for the virus, the state says.
“When we look at who is being diagnosed, it’s clear that we need to do a better job getting through to young, gay men,” Brasure says. “HIV is not going away.”