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STILL HERE: Long-term HIV/AIDS survivors in Chicago reflect on their experiences
by Carrie Maxwell, Windy City Times
2021-03-04

This article shared 2216 times since Thu Mar 4, 2021
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When the first reported U.S. cases of what later became known as HIV/AIDS were reported in June 1981, a number of physicians and researchers at the Centers for Disease Control (CDC) and elsewhere sought to understand the disease and its origins. This awareness increased over the course of that year, and years going forward, as the media, especially gay media, informed the public of the disease.

According to HIV.gov, "by [the end of 1981] there [was] a cumulative total of 337 reported cases of individuals with severe immune deficiency in the United States, 321 adults/adolescents and 16 children under age 13. Of those cases, 130 are already dead by December 31."

As the number of HIV/AIDS cases grew over the years, the death toll climbed. By the end of 1984—before then-President Ronald Reagan acknowledged in public that the disease existed—approximately 7,700 cases of HIV were reported in America. Of those people, 3,700 died of the disease, according to Avert.org . This was the year HIV/AIDS became an epidemic.

It was only when a reporter asked Reagan about AIDS on Sept. 17, 1985, that he acknowledged its existence publicly. According to an AIDS.gov timeline report, 30 Years of HIV/AIDS, Reagan's response to that reporter included "[calling] AIDS 'a top priority' and [defending] his administration against criticisms that funding for AIDS research is inadequate."

By the end of 1989, 117,508 people in the United States were diagnosed with AIDS; of those, 89,343 of them died of the disease, according to amfAR.org . These numbers grew over the course of the next five years with about the same percentages of total AIDS cases reported to the number of total deaths. Meanwhile, researchers were working on drug therapies to mitigate the effects of HIV/AIDS.

In 1995, the FDA approved the first protease inhibitor, otherwise known as the "AIDS cocktail." According to Avert.org, once this highly active antiretroviral treatment (HAART) "AIDS cocktail" was "incorporated into clinical practice, [it] brought about an immediate decline of between 60-80 percent in rates of AIDS-related deaths and hospitalizations in those countries which could afford it," including the United States.

According to amfAR.org, "[In 1996] for the first time since the start of the epidemic, the number of Americans dying from AIDS declines, dropping 23 percent from the previous year. The decline is attributed primarily to the success of the new combination therapies."

"[Then] in September 1997, the FDA approved Combivir, a combination of two antiretroviral drugs, taken as a single daily tablet, making it easier for people living with HIV to take their medication," according to Avert.org .

These new drugs/therapies, and others developed and put into use since then, have given people living with HIV/AIDS hope that they would not die like many did in those first 16 years.

Among the people diagnosed in the early years of the disease are five Chicagoans—Emmy-winning AIDS activist and ordained minister Rae Lewis-Thornton (diagnosed in 1987), Illinois state Rep. and House Majority Leader Greg Harris (diagnosed in 1988), TPAN Director of Publications and Positively Aware Editor-in-Chief Jeff Berry (diagnosed in 1989), Howard Brown Health President and CEO David Ernesto Munar (diagnosed in 1994), and Ruth M. Rothstein CORE Center Consumer Development and Advocacy Coordinator Peter McLoyd (diagnosed in 1997).

Lewis-Thornton, a 57-year-old Black cisgender straight woman, found out from the Red Cross that she was HIV-positive after donating blood. Her memoir Unprotected, chronicling this journey, will be released later this year.

"In fact, I organized the blood drive because of blood shortages in Washington D.C., where I lived at the time," said Lewis-Thornton. "People were afraid to donate blood because of HIV/AIDS. I thought it was stupid that people actually thought you could contract HIV from donating blood."

When Lewis-Thornton found out about her HIV-positive status, she said her initial reaction was shock because she did not meet the stereotypes of who could contract HIV. At the time, she said her only solace was that the Red Cross representative told her that she may never contract AIDS; however, in 1992, Lewis-Thornton's HIV-positive status turned into an AIDS diagnosis.

Harris, a 65-year-old white cisgender gay man, was first diagnosed with HIV and then, in 1990, with AIDS.

"My reaction at first was panic, and then deep depression and feeling hopeless watching all my friends get sick and die," said Harris. "I think I coped with that in two ways: throwing myself into volunteering for community organizations and also substance abuse."

Berry, a 62-year-old white cisgender gay man, said that although he was diagnosed with HIV in 1989, he believes he contracted it in the early to mid-1980s.

"When I received my test results, I was scared because many of my friends had already died or were sick at the time," said Berry. "My doctor told me he could not treat me as he did not have any patients with HIV, and referred me to the HIV clinic at Northwestern. I went home and cried."

Munar, a 51-year-old Latinx cisgender gay man and first-generation American whose parents emigrated from Columbia, was in a monogamous relationship at the time of his diagnosis.

"I was completely shocked because I had tested negative six months prior," said Munar. "Because there were no effective treatments at the time, I feared I would not live to see my 35th birthday. Stigma, fear and shame contributed to a deep depression that lasted years, a period when I confided in very few people."

McLoyd, a 68-year-old Black cisgender straight man, found out he was HIV-positive on Valentine's Day, two weeks after being tested at the Chicago Department of Public Health clinic.

"I spent those two weeks knowing that whether the test results were positive or negative, my using days had run its course," said McLoyd. "I was actively using heroin and cocaine and expected the test to return positive, but I was stunned to learn that I had fewer than 25 CD4 cells, PCP pneumonia and other opportunistic infections."

Lewis-Thornton's treatment began when she enrolled in a National Institutes for Health (NIH) study. She went every six months but did not tell her primary care physician (PCP) about her status. When Lewis-Thornton was put on AZT, she finally told her PCP who had no idea what to do for her and told her to defer to whatever the NIH doctor recommended. Lewis-Thornton said she finally received proper medical care when her HIV converted into AIDS.

"I ended up at the Women and Children HIV Clinic at Cook County Hospital, now the CORE Center, where I continue to receive excellent care to this day," said Lewis-Thornton. "I think, had it not been for the director of the clinic, Dr. Mardge Cohen, I would have died. I came to the right place with the right physician at the right time."

Harris echoed what Lewis-Thornton said in that there was only a small handful of doctors and other medical professionals who knew anything about HIV in the 1980s.

Berry said that the care he received at the Northwestern Memorial HIV clinic at the onset of his diagnosis was "phenomenal." He added that renowned HIV physician and researcher Dr. Rob Murphy became his new doctor and he also received counseling at the clinic to help him deal with the shock of his diagnosis.

"That was life-saving, because it was there, for the first time, that I revealed to another person that I had been sexually abused by my father as a child, and was diagnosed with PTSD."

Munar said the live-saving combination therapies that became available two years after he was diagnosed enabled him to boost his compromised immune system. But he feared the possible side effects and that the therapies might not be effective.

McLoyd began his treatment at Cook County Hospital and later at the CORE Center, where he, like Lewis-Thornton, still receives care to this day. He is glad that so much more is known today about HIV and the anti-retroviral treatments have been improving over time.

Lewis-Thornton, Harris and Berry were all given AZT at first to treat their HIV. Lewis-Thornton said she was given all the first-generation HIV medications and at one time she had to take 32 pills a day that resulted in "horrible side effects" like fatigue, diarrhea, nausea and headaches but she "kept pressing on." Even today her drug combo is six pills a day along with other medications.

For Harris, the dosing regime was really difficult and complicated to maintain. Like Lewis-Thornton, the side effects were really bad and "often worse than the disease itself, some of which I am still dealing with. The newer drugs are like one or two pills a day and barely any side effects. It is a world of difference, however; they are still very expensive, so accessing them and the diagnostic testing they require are still causing inequities in access."

Berry said that he developed a resistance to each new drug he would take, since his virus was was never fully suppressed.

"It was only later when we discovered combination therapy, and that it was the key to suppressing the virus and reducing viral load, that the treatment got better for everyone," said Berry. "But even those first powerful protease inhibitors were difficult to take, requiring handfuls of pills multiple times a day with debilitating side effects, but they kept me and others alive. It was only after 30 years of living with HIV that I was finally able to take one pill, once a day, with virtually no side effects."

McLoyd thought the protease inhibitors that were available would be included in his drug cocktail, but that did not happen. He received two drugs at the time, AZT and Epivir, and it was only after his viral load increased that his drug cocktail was changed. McLoyd was prescribed the protease inhibitor Indinavir and replaced the AZT with Stavudine.

"There was not as much discussion about racial disparities in healthcare that I recall, but it was disappointing to hear my white peers talk about their three drug regimen when I was only prescribed two," he said.

When asked what she would now tell her younger self, Lewis-Thornton said she wished she had known the language of trauma and the cures to break its cycle, but that did not come until much later.

Harris would tell himself "lots of wise and calming things. But the fear and stigma was so bad back then, I probably would not have listened."

Berry would say that things would be okay, even though it does not seem that way, and that sharing his status with the people closest to him would be "difficult and emotional for you but they will still love and support you just the same. Do not be afraid to ask for help and when you give back and help others along the way, you will get so much back in return. Do not ever give up hope."

In Munar's case, he would say "there is hope. The journey is hard but it imparts many valuable lessons."

Munar added that his only desire at that time was to grow older and now he is "eternally grateful" that happened.

For McLoyd, it would include asking questions and speaking up for himself when something did not feel right, which he did not do in the beginning.

"Go to support groups, listen and learn from your peers who have more experience and appear to be knowledgeable and doing well with their treatment plans," he added.

Speaking with other long-term HIV/AIDS survivors, Harris said he is most struck by when they speak about their fears of growing old and being alone, which is something they never thought they would have to do. They also speak frequently of grieving the loss of friends and having survivor's guilt.

Lewis-Thornton said that the most important thing she has heard from other survivors is that "we have survived a period where it was expected that we would die. We never made any long-term plans back then so in a lot of ways we had to begin to think about our lives in a different way. It became almost a re-definition of who we were, especially those of us who were AIDS activists; [it] had become the sum total of our lives. Later on, we had to reimagine our lives and, for me, that meant going to seminary and expanding my activism beyond HIV to women's issues."

Berry said he is "continually amazed by the inspiring stories of resilience and strength I have heard from other long-term survivors, and while some may be different than my story, and each story is unique, there is a common thread of humanity and perseverance woven through all their stories that resonate with me."

"There is a shared experience of fear and dread among those of us who lived through the years when treatments were not available and infections and death continued to spike," said Munar.

McLoyd said that it is a "mixed bag" and it "makes a big difference" to have people to talk to about one's HIV/AIDS status. He added that with the emergence of COVID-19, for himself and "other long-term survivors, HIV is no longer at the top of their list of concerns."

As for how comfortable they are in talking about their HIV/AIDS status, at first Lewis-Thornton did not share it with all but a handful of people until she thought she was dying, and now, due to speaking out, she became the first Black woman to tell her story nationally when she appeared on the cover of Essence magazine. She said her "life is an open book."

For Harris, being public about his status was never in question, however; he said that even today it surprises him "how many people tell me they still think it is a courageous act to openly talk about it. It makes me sad to think that after all this time; there is still fear and stigma not only in the broader community, but also within the LGBT community."

Berry said that working at TPAN for the past 28 years and being involved in HIV advocacy has given him the freedom to speak about his status, thanks to the support he received from his family, friends and co-workers. He added that many people do not have that option due to a variety of factors.

Munar said "no and yes" and that he is more comfortable in his body and it has taken time to unlearn "HIV shame and blame. I also reject the notion that I am the disease; it is part of me but I am so much more than just my serostatus."

"I have always felt comfortable talking about my HIV status—speaking at universities, high schools and other venues, McLoyd said. "It is a norm, but not something I relish doing, as I once did."

In terms of how they see the current COVID-19 pandemic in relation to the HIV/AIDS pandemic, there are similarities and differences. They all recognize the disparities in treatment on a variety of fronts for those who contract COVID-19 whether they are due to ones race or socioeconomic status or where they reside. This also continues to happen for those who contract HIV.

Lewis-Thornton said that unlike with HIV, she believes the medical community and politicians recognize the disparities and "are doing what they can to help reduce the numbers in Black and Brown communities."

"People do not believe they can contract COVID-19, that is until it happens to them, just like HIV," said Lewis-Thornton. "People do not do the simple things to keep themselves safe, like wear a mask, like use a condom."

Harris said that, in many ways, history is repeating itself due to "slow and incompetent action by the federal government along with weird conspiracy theories, outright denial and scapegoating by both President Reagan and Trump, and other high officials." He added that stigma and distrust of the medical community are the same now as they were during the early days of the HIV pandemic.

"We see many of the same disparities now that existed and still exist in the HIV pandemic, but in today's 24/7 news cycle, the internet and digital technology it is revealed in real time," said Berry. "I think there is an opportunity for us to use what we have hopefully learned from the past, to address these disparities in innovative ways, such as opening up vaccination centers in Black and Latinx communities, and providing education to address issues like medical distrust."

McLoyd pointed to the CDC data that show, like those with HIV/AIDS, "there are more COVID-19 cases, severe illnesses and deaths in minority communities nationwide. Many of us live in locations and conditions that negatively affect many health concerns including COVID-19."

Munar said that at Howard Brown, staff members are using their "three decades of experience in fighting HIV to inform our response to COVID-19. It comes down to establishing a trusting relationship and providing scientifically valid tools for the community to use in their context."


This article shared 2216 times since Thu Mar 4, 2021
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