RALEIGH, N.C. – A man living with HIV said he and other patients still experience stigma associated with their status.
Kevin Varner said he can still remember the day in 2006 when he learned he was HIV-positive. He was living in Greensboro at the time. He had just come home from work when a woman with a clipboard rang his doorbell. She began asking him questions about his past HIV tests and what he knew about the virus.
“The whole time, I'm like, 'What are you trying to tell me?'” he said. “I said I've always come back negative. And right then, she said, 'Well, this time, Mr. Varner, you weren't so lucky.'”
Varner began viral suppression treatment almost immediately. There is still no cure for HIV, but its impact can be halted if a patient starts taking medication to stop its spread right away.
Within four weeks, his viral load dropped to almost undetectable levels. Today, Varner said he almost never even thinks about his HIV status. But he still remembers the way he was informed of his status.
“I'll never forget that. It was so shaming, like I had lost the lottery or something,” he said.
June 5 marked 40 years since the CDC first published a bulletin describing the disease now known as AIDS. It took another three years to isolate the HIV virus.
By the time Varner was diagnosed, the drug cocktails devised in the 1990s had been consolidated into a single pill. He said that convenience makes it much more likely someone with HIV will keep taking their medication.
The stigma issue is another matter.
The same day he was diagnosed, Varner was accepted into graduate school to become a licensed counselor. He still maintains his practice and several of his clients have HIV.
He said anti-HIV stigma remains a problem, especially in the rural South and in communities of color. In some cases, fear of how the news will be treated prevents people from seeking treatment.
One of his clients resisted getting care for some time because a friend of a family member worked at the hospital where the HIV clinician was located.
“They were afraid tongues would wag and it would get back to their mother,” he said. “And so, this thought process of who is going to find out about this, that I can't control, really prevents people from getting into care.”
Beyond the stigma issue, Varner said the other problem is access to treatments needed to keep the virus in check. Medications cost patients an average of $36,000 per year.
New HIV diagnoses are highest in high-poverty areas. HIV is a pre-existing condition under the Affordable Care Act, so Medicaid and most private plans will cover some of the cost. Additionally, North Carolina has a medication assistance plan for anyone with incomes up to 300% of the federal poverty level.
These days, Varner said he hardly gives his HIV diagnosis any thought, other than taking his viral suppression pill every evening. He works out regularly to minimize the chances of any health problems the virus could aggravate, something he said also helps his mental health.
If you're diagnosed with HIV, he said finding a support network of people you know and trust is crucial.
If you know someone with HIV, Varner said there are several ways you can help. For starters, don't disclose their HIV status to others. Varner said that's the patient's story to tell. If someone tells you they are HIV-positive, Varner said to thank them for sharing that and then, instead of asking how they got it, ask what it's like for them to live with it.
“There are so many times that I think just that one question, if someone gets curious enough about living with HIV that, what's it like for you, it can change everything,” he said.
New policies to combat HIV continue to develop. A bill in the N.C. General Assembly would allow immunizing pharmacists to prescribe and dispense several medications for a variety of diseases, including post-exposure prophylaxis, or PEP, for HIV.
HIV advocates say PEP works best if someone gets it within 48 to 72 hours of their initial exposure to HIV, so allowing pharmacists to dispense it directly would save crucial time. The bill is now in the House after passing the Senate unanimously last month.