AIDS patients in Kentucky, like those in the rest of the country, no longer face the automatic death sentence of the early years of the epidemic because of more widespread testing and improved treatment.
Life expectancy has improved, but AIDS — which was first reported by the Centers for Disease Control and Prevention 30 years ago Sunday — remains a serious health threat, with Kentucky's minorities and poor being affected in disproportionate numbers.
The stigma of having the disease also lingers, especially in rural parts of the state.
"Once you leave the borders of Lexington, it's really bad," said Mark Royse, executive director of AVOL, which provides AIDS education and support for clients in 72 Kentucky counties. "We have clients in rural areas of Kentucky who hide their medication so if something happens to them, their family members won't find out" that they are HIV-positive, Royse said.
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"The stigma is so bad in some communities, it can put you at risk physically" if your HIV status is known, he said.
The stigma stems from the public perception of AIDS, said Dr. Robert Crosby, an AIDS researcher and chairman of the department of health behavior in the University of Kentucky's College of Public Health.
"AIDS was marginalized early on as a 'gay' disease," he said. Then it was perceived as a disease of drug users and heterosexuals with multiple sex partners. Or, Crosby said, the public perception was that AIDS infected "folks who had it coming to them because they had sex outside of marriage or had sex with too many people."
That false perception continues to discourage people from being tested, he said.
"They are afraid to get tested because they are afraid of the social stigma that follows," Crosby said. "We treat people with this disease different from the way we treat people who have cancer."
He said that problem that isn't going to go away.
According to the non-profit Kaiser Family Foundation, Kentucky ranks 19th among states for HIV infection. Health officials say that at least one new HIV infection is discovered each day in Kentucky. Many more go undiagnosed; nationally, roughly 20 percent of those with HIV aren't aware that they have the disease.
"HIV is very much a global pandemic," Crosby said. "The consequences of this disease will affect all of us and already has." Among the threats he cited is "the vast potential for formation of new disease," such as drug-resistant tuberculosis.
That global impact can overshadow the fact that people are still getting sick in the Bluegrass.
"The point to drive home is that a lot of people think of Africa or China or India when they think of AIDS," said Royse, the AVOL executive director. "This issue is still very real here at home."
'Know your status'
Researchers, advocates and health officials come back to the same point: "AIDS is 100 percent preventable," Royse said.
"Our message is to know your status," said Dr. Kraig Humbaugh, state epidemiologist at the Department of Public Health.
The earlier HIV is detected, the more effective the treatment. Royse said that people who have tested positive for HIV are 90 percent less likely to infect others.
Humbaugh said, though, that in Kentucky, people often wait too long. About 30 percent of those in Kentucky who test positive for HIV have already developed full-blown AIDS, he said.
The Lexington-Fayette County Health Department, like all health departments across the state, provides free HIV testing. Jessica DuMaurier, who oversees the HIV program for the Lexington health department, said test results can be available in as little as 20 minutes.
Any patient who tests positive is referred to the UK Bluegrass Care Clinic. Treatment is provided regardless of whether the patient has insurance, DuMaurier said. Patients usually have their first appointment within two weeks of diagnosis.
"The first thing we tell people is their life is not over," DuMaurier said. "We assure them it is not a death sentence."
Humbaugh said that at one time, 100 percent of people infected with HIV in Kentucky died within five years. Now, 82 percent are alive after five years because of improved treatment.
Those numbers are encouraging, but Humbaugh said the treatment can have serious side effects, and it must be maintained to remain effective.
DuMaurier encourages everyone who has unprotected sex to have an HIV test, even if they are in a long-term relationship. Even if you think you are in a monogamous relationship, she said, unprotected sex is always a risk.
There is a rising rate of infection among those 18 to 24 years old, she said. They simply don't believe it can happen to them. "They tend to think they are going to live forever, or they say, 'That person doesn't look like they have AIDS'" so unprotected sex with that person is assumed to be safe, DuMaurier said.
Royse said there is a generation that learned only about abstinence as a protective measure and that lack basic information about AIDS infection and effective use of condoms. He said he has sat with teens as young as 16 and 17 as they told their parents they are HIV-positive.
AVOL funding cut
For the near future, there is both good and bad news, Royse said. Last summer, President Barack Obama became the first U.S. president to map out a strategy for dealing with HIV.
Unfortunately, Royse said, those efforts are focusing on urban areas with the highest infection rates and decreasing money to preventative programs, such as AVOL, that reach into rural areas.
He said he expects his prevention budget to be cut by about 25 percent.
The best thing people can do is take responsibility for getting themselves tested and making sure that friends and family get tested, too. Not talking about the disease or not being willing to be tested, Royse said, "creates the perfect storm" for the disease to spread.