AIDS Survivors' Lives Forever Changed
by Paula Levihn-Coon
AUSTIN — Bill’s body shook as he quietly cried during an interview in June. The 69-year old was sharing his reaction to antiretroviral drugs that became available in the mid-1990s to combat HIV – the human immunodeficiency virus. His emotions overwhelmed him as he recounted his doctor telling him that his viral load was “undetectable.”
“I responded miraculously. I was a new person in one month,” he said through tears. “It was fantastic!”
In the 1980s, an HIV diagnosis was tantamount to a death sentence - 96% of those diagnosed died, according to the CDC. Since the advent of antiretroviral drugs in the mid-1990s, many people with HIV lead healthy lives. Today, about 6,500 people in Austin and 90,000 in Texas are living with the disease.
Forty years after HIV started killing hundreds of thousands of people, especially gay men, in Texas and around the world, three Austinites living with AIDS sat down with the Moody Courier to discuss how the disease has changed their lives.
Bill received his HIV diagnosis in 1984 when he was 34. His diagnosis was “not a surprise for him,” he said, because he was a “sexually active child of the 70s” who knew ex-lovers who were sick.
Greg was a 28-year-old University of Texas Law School student when he was diagnosed with HIV in 1988. He took the HIV test to “ease” his mind after reading about the new “gay cancer,” he said.
Dirk was diagnosed with HIV in 1986. When he came out at age 30, he was married with children. HIV-aware, he was a regular condom user who attributes his infection to one night of unprotected sex.
The interviewees’ names have been changed to protect their privacy.
The psychological costs of living through the early AIDS epidemic were horrific. Doctors routinely prescribed antidepressants when they gave their patients their HIV diagnosis. “Rest, eat well, and we wish you well,” was what doctors told their patients, Greg said, because there were no medications available to treat HIV.
Patients lived with anxiety over their own imminent deaths and grieved friends and lovers who died around them. Dirk cared for two lovers who died. Bill remembers receiving messages on his answering machine that “so and so had died.” It happened so often that he “couldn’t keep straight who was alive or dead.”
“It was like living in a war,” Greg said. “So many people died so young and so horribly.”
“Who’s going to die this week?” was the question constantly on his mind, Dirk said. “Will it be me?”
People diagnosed with HIV often experienced an existential crisis. “My sexual self-worth cratered,” Greg said. “How could I be desirable when I had HIV?” Even today it is “hard to have intimate relations with people,” Greg added, because stigma still exists. “When you knew you were going to die, life seemed pointless. It was difficult to keep going.”
Besides negative psychological effects, the financial repercussions of an HIV diagnosis were devastating.
All three of these men earned advanced degrees. Greg a J.D., Bill an M.A. in archeology and Dirk an MBA from Wharton business school. Their educational achievements, however, did not insulate them from the devastating financial effects of having AIDS.
Medical vulnerability made retaining access to good medical care their highest priority. Even with the advent of effective antiretroviral drugs, all three men remained unemployed because they could not risk losing medical coverage if, for example, they were laid off from a job.
Because they did not have health insurance, Bill and Greg could only access good medical care by applying for federal disability benefits. As a result, they never followed their chosen career paths. According to the a 2009 report by the Texas Bar Association, the median income for an attorney in the Austin-Round Rock MSA with 25 years of experience was about $135,000 when adjusted for inflation. An archeologist’s average salary in 2019 was approximately $64,000 per year, according to the federal government. Instead of these salaries, Greg and Bill each take in less than $900 a month.
Dirk was more fortunate. When diagnosed with HIV, he had corporate health and long-term disability insurance and a $90,000 salary. In 1991, however, he became so sick that he could no longer work, lost his health insurance and had to apply for government disability benefits. His disability insurance paid him $50,000 a year until he turned 65, when his annual income dropped to about $30,000 in Social Security Disability benefits.
Besides these devastating financial consequences, “people living with HIV for a very long time are more likely to experience complications which inhibit their ability to do daily activities well” and are at risk for many serious medical diseases, according to Dr. Kristin Mondy, Chief of Division of Infectious Diseases at the University of Texas’ Dell Medical School. The causes of these are the “deleterious effects of chronic inflammation/immune activation from the virus itself” as well as from the “adverse effects of chronic medications,” whose “toxicities are not reversible,” she added.
Bill, Dirk and Greg all have permanent serious medical issues caused by HIV and the medicines they took to fight it. Among Bill’s issues are blindness in one eye caused by cytomegalovirus retinitis and coronary heart disease which has required an implanted defibrillator. Greg suffers from retinitis, sinus infections, borderline diabetes, neuropathy and a memory he says is “garbage” because of HIV. Dirk has coronary heart disease which has required five heart bypasses, low bone density and neuropathy.
Despite all these issues, Bill, Greg and Dirk are grateful to be alive and happy that people diagnosed with HIV today can lead normal lives. Some of effects of HIV on their lives have been eased by medical advances. Temporal distance has mitigated some of their psychological trauma.
“Time has healed a lot,” Bill said.
Much of the devastating toll HIV has taken on them, however, will never be healed.