HIV In The Mountain State: Mike Survives An Early AIDS Infection As Medications Improve
Mike spends a lot of time walking outside. And on the rare occasion that he’s indoors he never stops pacing. But today, Mike was in one place long enough to talk about his experience living with HIV was surprising.
“I’m burning 1,486 calories sitting still,” Mike said while rubbing his pet chihuahua on his lap. “I’ll be sitting here wearing him out like this. No coffee, no nothing. Well, Mountain Dew, but it helps slow me down.”
For the past 25 years, Mike has been living with HIV. He asked that his last name be withheld because he spoke openly about his history of using illegal drugs for this interview.
Mike was living in Florida in 1996 when he found out he contracted the disease. “Sitting there, in the prime of my life. I was only in my 30s. And in the prime of my life. Had a job I like, had a 57-foot yacht, a convertible.”
When Mike woke up with a fever one day, he decided to call off work. His friends came into his room because they noticed his car was still parked outside the house.
“They looked at me and said, “Oh my god, what's wrong? I said, “I told you I don't feel good!” And they said, “Oh my god. You look awful.” I told them I was going straight to the clinic.”
In the back of Mike’s mind, he knew the worst case scenario. Months earlier, a friend had revealed his own HIV diagnosis to Mike when they were injecting cocaine one evening. Mike’s friend said he needed to go get some medicine from a friend.
“What do you need? Headache medicine? Cold medicine?’ He said, ‘No. They're bringing me my AIDS medicine home.’ My heart shot down to my ass. I didn't know what to say because I thought, “We just shot up and shared a needle.”
A trip to the local health clinic confirmed his worst fears. Mike was diagnosed with the most advanced form of the disease: full blown AIDS. The doctors measured his T Cells, a type of white blood cell that can show the progression of HIV/AIDS. A patient who doesn’t have HIV/AIDS would have a T-Cell count between 500 to 1,600. Mike’s was at 2.
“I asked him, I said, ‘Well, I mean, what’s this mean? How long?’ And he said, ‘I’d probably say about three days.’”
The doctors prescribed him AZT, one of the first drugs used to fight HIV/AIDS. But, the drug’s high level of toxicity brought about horrible side effects.
“It was burning my body. I mean, there's like chemotherapy for HIV or something.”
Mike said the side effects were so bad that he didn’t want to live what time he had left in pain. He told his mom he wasn’t going to take his medicine anymore.
“‘You gotta take it Michael. It’s keeping you alive!’ I said, ‘It's making me have convulsions.’ I'd never had convulsions in my life. And I mean, my body jerked uncontrollably for about 40 minutes and I'd hurt from my neck all the way down to my ankles."
Mike tried alternative treatments like taking herbal supplements and getting blood transfusions. But, he ultimately decided to take the medicine his doctors had prescribed. Today, he’s living with an undetectable viral load of HIV in his body. That means standard HIV blood tests can’t detect the virus in his system.
Twenty-five years ago, Mike was told he had three days to live. Now, at 61, he’s doing great, walking several miles a day. But, according to Dr. Christine Teague who runs the Ryan White Program at Charleston Area Medical Center, if Mike’s diagnosis came just a couple years before 1996, he probably wouldn’t be here today.
“In 1994 is really when the first combination studies came out.”
Teague said one of the reasons HIV was so hard to treat initially is that the virus is able to adapt to individual drugs. “Combination studies” helped scientists figure out how to attack the virus by combining multiple drugs.
“People literally would be on death's door, and then they would get better. It was a miracle. I mean, it was just like the Lazarus Effect," she said.
But, that’s all changed in the past few years according to Teague. With the huge spike in HIV transmitted through intravenous drug use, she’s having to reprise an old role--providing care for someone she knows is likely to die soon.
“I haven't felt that way in HIV care in a long, long time.”
The Centers for Disease Control and Prevention has identified the outbreak in Kanawha County as “the most concerning in the nation.” The CDC released a report earlier this month focusing on what needs to be done to lower the HIV transmission rate. The report had two big findings according to Teague. First, Kanawha County residents don’t have access to sterile syringes. And second, people who use drugs encounter too much stigma from healthcare providers when they seek out medical help.
“The specific comments by people were 'I'd rather die than go to the hospital.' I just think that healthcare providers in general — we have to be very careful on how we're perceived, and have that cultural competency training, and just basic training on substance use disorder. What it is and what it isn't."
Teague added another shortcoming is missed opportunities for HIV testing. She said the CDC report showed patients were being seen in hospitals and clinics eight to 10 times before ever being tested for HIV.
While the problem of healthcare providers not testing people soon enough is something Teague is optimistic about getting it fixed. She knows that’s not enough to turn the tide of this HIV outbreak.
The West Virginia State Legislature and the City of Charleston both recently passed laws making it illegal to give people sterile syringes. Between those laws and what some decry as a deep stigma in the area’s healthcare system, Teague says several hundred people will end up diagnosed with HIV from this outbreak.