Living with HIV: The treatment, stigma and road to acceptance
“Everything has changed, including the use of the word ‘AIDS,’” said Amy Reese, clinical director of Triad Health Project in Greensboro. “People, even the docs, usually refer to it as ‘Advanced HIV’ now, because the word ‘AIDS’ is so pejorative and carries its own stigma.”
Triad Health Project is a nonprofit located in Greensboro and High Point that offers free testing, health education, and case management of people living with HIV and their families. Reese said anyone who is HIV-positive in Guilford County is eligible for assistance from THP and its resources such as, “housing, substance abuse treatment, mental health, support, transportation, food, and anything else that people might need to live.”
Reese said that when THP first started up until about 10-12 years ago, it was approved by the state to serve six counties.
“But fortunately, over time, those counties have other representation; they have their own now, so we are not covering such a large area.”
Reese said even though much has changed, there is also much that has stayed the same since the HIV/AIDS pandemic of the 1980s. She said the treatment is “insanely effective right now” with nine regiments of combination medications with few side effects, and some that are only one pill a day.
“The treatment is 1,000 light years ahead of what it was in the beginning,” she added. “First, there were no meds, then came meds, but they were toxic and had horrible side effects, and the pill burden was enormous–like people taking 25 pills a day. They weren’t really clear about whether the medications were effective, specifically at that point.”
With the addition of PrEP (Pre-Exposure Prophylaxis), a prevention medication for people who are HIV-negative, Reese said the chances of spreading HIV could be controlled. She said PrEP contains Truvada, (also an HIV treatment medication) and “the chance of transmission is like less than 1%, if at all.”
“It is difficult to get, though,” Reese said of PrEP. “Not that many providers know about it, which is crazy. Ask your doctor the next time you go.”
However, Reese said that acceptance and public perception of HIV has not improved since the 1980s.
“Everything has changed except for the stigma associated with HIV,” Reese said.
Which is why, she said, THP takes confidentiality very seriously. Everyone who comes into THP signs a confidentiality form, the number for THP is blocked to the recipient, and patients are asked if THP is allowed to leave a voicemail and if they wanted to receive mail at home.
“We are very, very careful about confidentiality,” she said. “People are still very afraid of their status being known to other people without their permission, just in terms of community gossip.”
Reese said that a common denominator with clients that she has noticed is the fear of someone finding out their status. She said some clients who take the big step to tell their families about their status, now have to use paper plates and plastic silverware or be followed around with bleach.
“There is that much misinformation,” Reese said. “Guilford County Schools, have their own sexual health education, but it really doesn’t have anything about HIV. And our new diagnoses are what? In their 20s.”
According to THP’s 2017-18 annual report, THP reached more than 2,585 people with health education, testing and services, and THP’s Preventative Services served 2,041 clients. THP’s Direct Client Services served 544 clients that ranged from ages 17 to 80 years old. Of those clients, 62 % were male, 36 % were female, and 2 % reported a gender “other than male or female.” According to the report, 80% of the clients were African American, while 14 % were Caucasian, 6 % were listed as other, and 4 % listed as Hispanic.
“Eighty-two percent of THP clients were living with incomes at or below 100 % of the Federal Poverty Level, and 29 % of clients had $0 income,” the report states. “Eighty-eight percent of THP clients reported a history of one or more complicating factors such as homelessness, mental illness, or substance abuse.”
Both Taylor Hicks, THP case manager, and Reese debunked a widely-held belief that gay men are only affected by HIV. Reese said that anyone from heterosexual women to IV drug users could contract HIV.
“We just started partnering with GC STOP (Guilford County Solution to the Opioid Problem) in our High Point office,” she said. “We are trying to break into that population because there is such a problem in High Point with the opioid epidemic.”
Roselynn Arroin does work with Triad Health Project, and also works with the Guilford Green Foundation, and serves as a community navigator (which is someone who is educated in prevention and treatment, among other health educators) for weCare with Wake Forest Baptist Health.
Arroin believes that a lack of sex education is to blame for the stigma that still surrounds HIV, and that sex education must start at a young age.
“If our educational system wasn’t missing funding and we did teach sex ed in our schools,” Arroin said, “you know, North Carolina is pretty high up on the list for contraction of any known STD… I think it is a little backward down here. North Carolina is not sex-positive; it is hush-hush.”
She also believes the United States’ (and North Carolina’s) politics are more focused on things that aren’t as important rather than the health of its people.
“In politics, we are more worried about things we shouldn’t be worried about, than things we actually do need to take care of here at home,” she said. “If we don’t push these advances in a public spotlight, then people won’t take advantage of this.”
To combat the stigma surrounding HIV, Arroin said, the community needs to put their differences aside and rally behind the common goal, which should be the health of the people and fighting the HIV pandemic.
“I really truly believe that HIV/AIDS can be eradicated, everyone can have healthcare, and we wouldn’t have to worry about coming in contact with someone who is infectious, and possibly share their status on forward, and furthering the pandemic.”
Leigh Brown, 58, is a transgender woman who has been living with HIV for about 30 years. Brown grew up in foster care, has lived on the streets of New York City, and is now regularly volunteering with THP’s High Point location.
“One day I was down at the health department, and I heard that you could get a sandwich for free [if you got tested], so I went in to get me a sandwich,” Brown said. “I got the results, and I ran.”
For a while, Brown fought the ability to accept the truth. But now Brown said that 90% of having HIV is learning acceptance; but said the burden of knowing what one’s status can be “hard on you physically, morally, and mentally.”
“I believe in God, I really do,” Brown said. “I remember I had a T-cell count of zero for four months, and they wondered why I was still alive. I’ve had PCP pneumonia, bacterial pneumonia, double pneumonia for no apparent reason, then the night sweats and the terrors. I am married to this woman, and she is not affected? It really got me.”
Brown was off an on treatment but was never consistent because of not having a stable living arrangement.
“Going back to the late ‘80s, early ‘90s for me, I did not know I was infected,” Brown said. “I should have known better because I had a very risky lifestyle…I don’t remember where I got it at, but I do know one thing, I do know that it was my own fault. For not paying attention.”
Brown said when the HIV medication, AZT, came out, a lot of friends fell apart.
“It gave people hope, but it also [affected] their ability to walk, and the side effects were so phenomenal that they didn’t even mark half of them. It is like this new thing with Viread and Truvada; I was on it for a whole year, and after taking it, I can hardly walk.”
Brown was living in the East Village and watched a lot of neighbors die off and homeless people that couldn’t afford the medication, “and I was one of those people,” Brown said. “If it hadn’t of been for the Ryan White Fund, I swear to God, I wouldn’t be here now.”
Even though Brown had a tumultuous time growing up in New York City, there were still instances of normalcy. Brown worked in law enforcement, has studied to be an EMT, and has three daughters and two granddaughters, all of which Brown loves very much.
“[My ex-wife] has stuck with me and still sticks with me, we are very much best friends,” Brown said. “As a matter of fact, I think it is better that we are friends like this than when we were married. Cause she’ll buy me clothes, I’ll buy her clothes, and it is not boy clothes, thank you, Jesus.”
Brown said the social acceptance of HIV in the media is at least trying. But as far as acceptance goes in the “black and poor communities, it is not there.”
“It is no longer a death sentence in the physical body, but it is a death sentence in the social standing,” Brown said. “Even though people say they accept you because you are HIV-positive, but do you know how hard it is to find a dentist to work on you?”
One thing Brown stresses is the importance of taking HIV medications as prescribed and continuing treatment instead of getting off and on like before. Right now, Brown is taking about six pills a day, compared to about 23 pills that used to be the regiment.
“This is my reason,” Brown said while showing me a picture of a chipper and cute toddler, which was Brown’s granddaughter. “I got sick, they hospitalized me,” Brown said. “Then these trays of pills over and over again. I felt wanted so, OK, I did them, but when I hit the street, I didn’t want anything to do with that shit. It is going to go away [I thought], I’m going to pray it away, and I am going to be OK. Until the next bout of pneumonia hits you and your kids gotta beg you to get in the car so they can take you to the hospital.”
But even still, Brown doesn’t feel optimistic and the feeling of loneliness hits.
“I am at a point where I am just waiting, honey,” Brown said. “That is real honesty. I get tired as shit sometimes, you know, you want to go out and meet somebody…but you can’t go out with them.”
Brown said THP’s women’s meetings are a “little tiny ray of hope” that is needed to keep those living with HIV alive. Brown’s advice to those living with HIV is to “put your seatbelt on because it is a hell of a ride.”
“It is going to take you places in your heart and mind that you never thought you’d ever be,” Brown said. “You have to fight your own personal guilt and your own personal feeling of being sorry for yourself…You know the assassin’s name, it is just at what point does he catch up with you?”
“You can’t give up; you just can’t,” Brown added.
THP offers free HIV testing (and other STI testing) at their offices in Greensboro on Mondays from 5 to 7 p.m. and Wednesdays from 1 to 3 p.m., and in High Point, on Tuesdays and Fridays from 1 to 3 p.m.
I went last month to get tested and observed the process. First, I was given a confidentiality sheet assuring that my information would be kept private. Then, I was given another form that asked about risk factors, such as, whether I was having unprotected sex and a question about what gender my partner(s) were. It also asked about medical history, whether or not I had an STI before, and my general contact information.
After filling out the sheet, I was led into the office of one of the health educators who talked about prevention methods and answered any questions I had regarding the subject. After that, I was led to the back and asked for a urine sample and a blood sample. After that, I was asked to fill out a brief survey about my experience, and I was free to go. The whole process took about 30 minutes, and the staff on-hand that day was pleasant and made me feel welcomed and comfortable.
Reese said if any business wants THP to come out and test people, they are there and always waiting for an invitation.
“There is a way for us to see an end to this,” Reese said. “It is just a matter of educating as many people as possible and trying to make sure people who are positive, are seen as people, and not as a disease. That is all, it is just going to take talking about it, and supporting each other, and we can totally be done with it.”
Triad Health Project will hold its Ron Johnson Red Ribbon Run and AIDS Walk on Nov. 9 in downtown Greensboro.
Katie Murawski is the editor of YES! Weekly. She is from Mooresville, North Carolina and graduated with a bachelor’s degree in journalism with a minor in film studies from Appalachian State University in 2017.