World AIDS Day: Know Your Status
By Dianne Anderson
Lots of wrapping going on this time of year, but the best gift is a long life.
December 1 is World AIDS Day, but the urgency is nowhere near those harrowing early years of the virus that had an entire generation on high alert for protected sex. The virus could lie dormant for years. It could strike without warning, and infection meant a death sentence.
Today, there are other choices. Single tablet medications work, it’s plentiful, and it almost makes the disease go away — for now.
At age 24, Joseph, not his real name, was diagnosed with nearly full-blown AIDS about ten years ago, but he had recognized all the telltale signs several years earlier. His glands were swollen under his chin and the side of his face, and his underarms.
In the very beginning, he remembers becoming severely sick with a major fever, headache and night sweats. From there, he sunk into deep denial in a very dark place.
He was never to speak about it to anyone.
For three years, he became celibate and threw himself into his work, determined not to deal with the reality, which also meant not getting a proper diagnosis, seeking help, or taking antivirals.
“I don’t know if I was feeling like just let the clock run out, or that I was not paying attention to the mortality of the situation,” he said.
Especially for Black men, he feels the high rate of HIV infection is partly due to the culture, and an unrealistic perception of toughness. His mom died when he was very young, and his father was estranged. There was little support and no family to rely on.
“When we’re sick, you have to toughen up. You don’t take medicine. You can’t cry, you can’t speak about your problem to your friends. All they’re gonna’ say is alright my [N-word], you got it,” he said.
Before the official diagnosis, he wasn’t feeling half-bad at times. He worked out regularly, had gained weight and felt great – until he didn’t.
“I was nodding off, it was like I was run down,” he said. “That’s when I knew things were getting bad. I didn’t have the energy. I was not hungry.”
By the second time he fell seriously ill, he landed in the hospital only 30 white blood cells away from full-blown AIDS. It was then that he said an epiphany kept him going. He wanted to live because his godson was depending on him.
He started Atripla, which for him had some side effects, and switched to Odefsey, a similar drug. He is now on Complera. Everybody is different, but for the most part, he has responded well to the antiretrovirals.
The average white blood cell count is 600 to 1200. His hovers around the middle.
“I’m undetectable. My viral load is less than 20,” he said. “My CD4 count is in the 700’s, meaning high white blood cell count.”
Having an undetectable viral load for at least six months means the virus could still be passed on by unprotected sex, but it is unlikely. It also depends on how much virus is transmitted per sexual contact, and whether the antibodies of the uninfected can be strong enough to kill off the virus in between sexual contacts.
But he feels the bigger concern is that the younger generation of Black youth seem less concerned about contracting the virus, which he says is because everything is still so hidden in the community. The conversation on HIV remains taboo.
“A lot of it is that no one is saying anything. Equal to that, they don’t know anyone — that they know of — who has this disease,” he said.
From the time that he started taking his meds, it worked. These days, it’s a pill a day, instead of dozens of pills daily to combat the virus when it first erupted. Even so, going into the process and learning about the infection is overwhelming for everyone who tests positive.
Some recent drugs like PrEP are becoming more available to prevent the spread of HIV, he said, but a lot of it depends on opening up the conversation about what’s at stake.
“If I’m talking to someone, I always let them know what they can do and what I’m doing to prevent the transfer of the virus,” he said.
He said Foothill AIDS Project has great doctors and provided mediation with excellent customer service. No frowns, and everyone is happy to help.
“They do a fantastic job, there’s a lot of assistance that comes with FAP,” he said. “Now that I’m on the other side of the spectrum, I feel content that I can keep this going.”
Access to the right HIV drugs and then keeping on the treatment is the key to survival, not only for the person taking the antiretroviral medications, but also to protect others from developing mutant strains of the virus.
Not sticking to a consistent drug regimen to prevent the virus from replicating can result in new drug-resistant strains of HIV that can be passed on through sexual contact.
“Drug-resistant HIV can spread from person to person. People initially infected with drug-resistant HIV have drug resistance to one or more HIV medicines even before they start taking HIV medicines,” according to the National Institutes of Health.
Laura Silvius, development manager at Foothill AIDS Project, said that HIV is very treatable today, and for the most part, those diagnosed with HIV can live a normal life expectancy.
That is good, but it also can give a false sense of security.
“The flip-side of that coin is that people don’t perceive HIV as being something serious anymore. They are not as careful about protecting themselves,” she said.
Those who are unaware of their status not only can spread the virus, but also become sick themselves.
The solution is a free 20-minute HIV test.
At the same time, the community is battling misinformation. She said that FAP tries to lessen the fear surrounding HIV infection, and the belief that it spreads by sharing silverware or a glass, or through casual contact.
“It’s the fear and stigma that’s keeping people from wanting to get tested,” she said. “That’s what World AIDS Day theme is trying to overcome.”
Youth are more vulnerable, as are senior citizens. For the first time in a long time, the health community is seeing HIV rates of infection tick upwards among youth, but also people over 55 years old.
Seniors do not think they are at risk because they are living longer and have sexually active lives, but they don’t worry about using a condom.
The CDC reports that seniors over 55 make up about one in six HIV infections. All it takes is for one person to get exposed to HIV, or hepatitis to drive the numbers higher.
After so many years, HIV remains stubbornly high in the African American community for men, women, gay and bisexual men, people under 24 years and over 55 years old.
Silvius said that the big concern is that of all groups, African Americans still make up the highest impacted.
She said getting tested and knowing status each and every year is the only way to battle the virus.
“This year’s theme for World AIDS Day is “Know Your Status.” Going forward and fighting the disease, getting tested is the easy thing that everybody can do to help fight HIV,” she said.
For more information on prevention and access, see https://www.preventionaccess.org/faq
For local help, see FAP at http://fapinfo.org/