It's been more than 30 years since the first AIDS cases were identified in the United States, and what was once a death sentence has shifted into the category of a treatable chronic disease.
Yet every day, at least one Kentuckian is diagnosed with HIV.
In spite of ongoing education and prevention efforts, that rate of infection had remained constant during the past decade. But now it seems to be on the rise, according to Mark Royse, executive director of AVOL which serves clients with HIV and AIDS in 72 Kentucky counties.
Since the introduction of antiretroviral drugs in the late 1990s, the ability to manage HIV and AIDS has increased, and the urgency to avoid infection has waned, Royse said. So has general awareness of the disease, he said.
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People see the once-ubiquitous red ribbon that became a symbol for finding a cure for the disease and ask Royse, "Is that still a thing?"
"With people now, the consciousness of HIV and AIDS is of poor little orphans in another country," he said. "They think people aren't dealing with this at home."
That's a problem, because HIV and AIDS are very much factors in Kentucky, he said. His nonprofit routinely offers support services, including housing assistance, to about 400 families affected by HIV and AIDS, he said.
Ignorance about the disease is something that Lauren Kirk and John Moses, HIV and AIDS outreach specialists for the Lexington-Fayette County Health Department, see in their work every day.
Their job is to be "in the trenches" to encourage people to practice safe sex, avoid sharing needles and get tested. Kirk said a lot of the people they see are young and were born after the AIDS epidemic was at its lethal peak. According to the Kaiser Family Foundation, AIDS was the leading cause of death in the United States among men ages 25 to 44 in 1993.
Although the numbers haven't been officially tabulated, health department officials are seeing more and more young people contract HIV, Moses said. Part of that surge, he said, is from the use of shared needles as heroin use in Kentucky is on the rise.
"We are just sort of biting our nails on that one," Royse said, and the official epidemiological data on new infection rates is about 3 years old, but "our gut is that it is on the rise." A spike in heroin-related deaths and a 57 percent increase in heroin-related arrests prompted Lexington Mayor Jim Gray to form a task force during the summer to look into how to stem the problem. Sherelle Roberts, spokesman for the Lexington Police Department, said that work continues to restrict the flow of heroin into the community but that it remains a serious problem.
And Royse said there was a sizable number of people who do not know they have been infected because they haven't been tested.
"We have a whole lot of people who have been left behind," he said, "and they are the most vulnerable people in Kentucky."
At the heart of the issue is the stigma attached to the disease. From talking with her peers in other states and clients who move into Kentucky, Kirk said, she thinks Kentucky is one of the worst places in the nation for shaming HIV and AIDs patients. As an example of that, Royse knows one client who kept his HIV medicine in an air vent in his apartment because if he died, he didn't want his family to discover his antiretroviral drugs and learn of his HIV status.
Discussion of HIV and AIDS includes talk of sexuality, homosexuality and drug abuse. "It is a perfect storm of things we don't like to talk about," Royse said.
And, he said, a "silence-is-better" policy is especially prevalent among Latinos and blacks, who account for the majority of new infections in Kentucky.
He's concerned that if people stop talking about HIV and AIDS and become complacent, the infection will continue to spread.
But there is a good news. Research continues to move toward the creation of an AIDS vaccine, Royse said. And Lexington is lucky to have a strong network of social and medical services for people who become infected, Moses said. In some states, there are long waiting lists to get access to the antiretroviral drugs needed to ward off the evolution from HIV to full-blown AIDS. In Kentucky, Moses said, he has not run into that problem.
"Lexington is just an unusually service-rich city," said Royse. That includes AVOL, which offers the Rainbow Apartments, which have subsidized rents; Solomon House, for people needing some assistance with day-to-day living; and a host of housing and support programs. But, he said, "a lot of people don't even know who we are or what we do."
He said he hopes HIV and AIDS awareness and prevention will follow the arc of cancer as far as how it is perceived in the public eye. Not too long ago, he said, shame and silence were associated with cancer. Now the country is awash with pink every October for breast cancer awareness month, and Royse said he hopes to see the same groundswell of education and prevention efforts for AIDS, because that red ribbon? It's still a thing.
For more information about AVOL, go to AVOLKY.org or call (859) 225-3000.
To learn more about the outreach efforts of the Lexington-Fayette County Health Department, call (859) 288-2437.
AIDS in America: significant milestones
1981: First case reported in America
1985: Movie star Rock Hudson dies, schoolboy Ryan White fights to go to school in spite of his AIDS diagnosis.
1987: President Ronald Reagan declares AIDS public health enemy No. 1
1987: AVOL formed in Lexington
1991: Magic Johnson retires from the NBA citing his HIV-positive status.
1993: President Bill Clinton creates National Office of AIDS Policy.
1997: Deaths from AIDS drop by 40 percent after the use of antiretroviral therapy.
2006: The CDC recommends AIDS testing become part of routine care for any American older than 13.
Source: Kaiser Family Health Foundation