Long-Term Survivors: Paul and Matt
The Beginning of HIV/AIDS in America
“You have to understand. At that time, it felt like a war.”
When HIV/AIDS got its first foothold in the United States in the early 80s, it began sweeping silently through the gay community like a plague. The research was sparse, and it was years before President Reagan even publicly acknowledged the crisis. By that point, thousands had succumbed to the disease.
House of Ruth client, Paul, is a long-term survivor of HIV. He describes the beginning of the epidemic as chilling and bleak. “All of my friends from the 80s and 90s are dead,” he says. “There was just non-stop death. You have to understand. At that time, it felt like a war.” At the beginning of the epidemic, the life expectancy of new HIV/AIDS patients was a matter of months, if not weeks.
Early HIV/AIDS Diagnosis
Paul was working as a psychiatric nurse in 1984 when he began to feel sick. “I’d had strep seven or eight times that year, and my primary care doctor started questioning me about sleeping with men,” Paul says. When Paul was diagnosed in 1984, there wasn’t yet a true HIV test, but his blood work indicated that he was infected. Despite being told that he had only three months to live, his diagnosis was confirmed by an antibody test in 1990.
Paul’s partner, Matt, is also a long-term survivor. He was working as a CNA and living in a rural northern midwestern town when he was diagnosed in 1994. He went to the health department after having night sweats and exhaustion. At that time, he was only the second person to be diagnosed with HIV at that facility; the first was his partner, who had knowingly infected Matt. At the time of his diagnosis, Matt was told he wouldn’t live past his 24th birthday.
Early HIV Treatment: AZT
Paul and Matt both went on disability after their diagnoses. Paul had been terminated for his sexuality, and in addition to the symptoms of the disease, early HIV/AIDS patients had to contend with the aggressive treatment that often came with severe side effects.
In 1987, the FDA approved the first antiretroviral drug, zidovudine, also called AZT. However, AZT was first identified decades earlier as a potential cancer treatment, but was initially shelved because it was deemed “too toxic.”
“At that time, they were just trying to save us,” Paul says, “but the medicine was intolerable.” Paul was on and off his prescriptions in the first years of his treatment simply because he couldn’t stand the vomiting and migraines. Matt recalls struggling (and often failing) to keep down 20-30 pills a day. However, fevers, nausea, headaches, and weight loss are among the mild symptoms of AZT: more serious symptoms included serious damage to the liver, heart, and muscles.
HIV Treatment Today
HIV/AIDS treatment has progressed dramatically. Now, the recommendation is a combination of antiretrovirals, rather than a massive dose of one treatment. Instead of taking dozens of pills a day, HIV patients are prescribed a more manageable dosage. Side effects are less acute, and the medications don’t ravage the body of the patient, as early therapies did. HIV is managed as a chronic illness now, like diabetes, and the life expectancy of HIV patients has improved dramatically. Paul now takes only one pill a day for his HIV, and Matt takes only two.
The Long-Term Survivor’s Struggle
“It’s not the HIV that gets you down, it’s everything else.”
Unfortunately for long-term HIV survivors like Paul and Matt, they were simply too early to avoid the serious effects of the disease and the decades of toxic treatments. Long-term HIV survivors are significantly more likely to experience comorbidities, chronic illnesses, and mental illness. “It’s not the HIV that gets you down,” Paul says, “it’s everything else. Pain can really get you down.” Among other things, Paul struggles with peripheral neuropathy, rheumatoid arthritis, psoriatic arthritis, fibromyalgia, degenerative disk disease, as well as major depressive disorder and bipolar disorder. Matt also struggles with depressive disorder and bipolar disorder, diabetes, and kidney disease, among other chronic health issues.
Paul and Matt have been together for over 12 years. They take care of each other and understand one another, not only because they share a diagnosis but also because to be a long-term HIV survivor can mean isolation. Both have lost their friends to the disease and their families to discrimination. Even navigating the healthcare system, their lifeline, has been a challenge. In the beginning, some doctors refused to treat HIV patients, and Paul remembers being called slurs at the emergency room. As an early HIV patient, finding a trustworthy and sympathetic infectious disease specialist could be life-changing. Matt and Paul describe the relationships with their first long-term doctors as being almost familial.
Above All Else, A Cure
“We never thought we’d get to see this point. A point where HIV is manageable.”
Since their diagnoses, Paul and Matt have seen many changes. The face of HIV itself has changed, along with treatment and prognosis. “My friends who died were courageous and fought HIV/AIDS in their own way. They left a legacy,” Paul says. “Now I can say to people who are newly diagnosed with HIV: ‘it’s going to be okay. It may feel like the end of the world, but for you, it’s not.’”
Despite the enormous changes Paul and Matt have seen since their diagnoses, there’s still more they’d like to see: community support to help HIV/AIDS-positive people thrive; a decrease in the stigma associated with the disease; an increase in testing and treatment; but above all else, a cure.
Until there’s a cure, House of Ruth is here to help support HIV/AIDS-positive people in our community. Paul and Matt have been House of Ruth clients since 2009, and say it helps bridge the gap so that they can be comfortable. Disability payments barely cover rent, so House of Ruth’s food pantry and financial assistance help Paul and Matt to make ends meet. In the past, House of Ruth has helped to cover a security deposit and first month’s rent to ensure safe housing for Paul and Matt. “House of Ruth goes above and beyond,” Paul says, “they’re like a family to us.”
If you’d like to help House of Ruth support HIV/AIDS-positive people struggling with homelessness or financial insecurity in the Louisville community, donate today.
