'Our plans didn't go past Friday night': How an Erie man has lived with HIV for 32 years

HIV/AIDS was still considered a death sentence in March 1990 when Erie native Don Stroz tested positive for the virus.

The former nurse wasn't surprised. His partner was HIV-positive and many of the couple's friends in southern California, where they lived, were dying from the disease.

"It became almost a routine," Stroz said. "You visited them in the hospital, went to their funeral, and you mourned."

Stroz, now 76, would not have predicted 32 years ago that he would be back in Erie, collecting Social Security and working part-time at a hardware store.

In fact, Stroz didn't think he would be alive more than three decades after being diagnosed with HIV.

"We had a group of people we all knew were HIV-positive. Our plans didn't go past Friday night," Stroz said.

People who were HIV positive people had good reason to live for the moment. Though new treatments were available at the time, including azidothymidine (AZT), people with HIV were still developing AIDS and more than 40,000 of them were dying every year from the virus.

Now, 40 years after the Centers for Disease Control & Prevention first used the term AIDS and published its first case definition for the disease, the prognosis for those infected has improved measurably.

"It's more of a chronic illness with multiple treatment options," said Dr. Nancy Weissbach, an infectious diseases specialist at Saint Vincent Hospital. "Patients are living normal and long lives, taking one pill a day with little to no side effects."

A special gift from a dying AIDS patient

It's far different from when Weissbach worked in an HIV/AIDS clinic at the University of Rochester in upstate New York in the late 1980s and early 1990s.

Since she was a physician, she was assigned the sickest AIDS patients, those dying of rare cancers and opportunistic infections.

"I had patients in their late teens, who had acquired HIV in their early teens and were already ill with AIDS in their late teens and early 20s," Weissbach said. "They were passing away in their early to mid-20s."

She forged close relationships with many of those patients, some of whom were reluctant or scared to tell their families they were sick because of the stigmas attached to HIV/AIDS.

Weissbach grew close enough to some of her patients that they gave her presents: Christmas ornaments, a music box and a special tea set.

"I had a patient with multiple infections and was at home with IV medication," Weissbach said. "Despite that, he invited me over for English tea in his backyard with his significant other.

"He invited my entire family. We had English tea and he gave me a porcelain tea set, which I still cherish to this day. He died less than six months later."

Protease inhibitors became 'a game-changer'

Though his diagnosis was almost expected, Stroz fell into a depression after he found out he was HIV positive. What helped was moving — with his partner — from oceanside Long Beach, California, to Big Bear Lake in the San Bernardino mountains.

It not only was a change in scenery, it was where Stroz found his calling. They joined the local Lions Club and started an HIV education program.

"We felt it was important that everybody learned about HIV," Stroz said. "We shared statistics. We educated people."

Stroz and his partner also volunteered for new HIV/AIDS treatments at a local clinic, which in the mid-1990s included protease inhibitors. These drugs prevented the virus from replicating, slowing the disease's progression and decreasing symptoms.

It was a game-changer, Weissbach said.

"It could suppress the amount of the virus in the blood so significantly that it would be undetectable," she said. "It was the dawn of the new HIV era."

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Stroz considered himself fortunate that, despite being positive for years before these new treatments, he remained in relatively good health with only two mild opportunistic infections.

Though it took years, his T-cell count — a way to measure the disease's progress — climbed higher and higher, reaching levels similar to those of someone not infected with HIV.

It gradually dawned on Stroz that he might not die of HIV.

"I remember talking with my mom, and her saying that I will have to take care of her stuff when she dies," Stroz said. "I told her that I would probably die before she does. ... She died 15 years ago."

Storz reached another milestone about 10 years ago when a letter from the federal government arrived in his mailbox.

Stroz no longer would be eligible for Social Security disability, the letter stated. Instead, he would receive regular Social Security payments because he had turned 66.

"They were saying I'm no longer sick, I'm old," Stroz said with a laugh.

He isn't alone. Stroz's former partner, who tested positive for HIV about 40 years ago, is also in good health.

'These patients are dear to me'

AIDS diagnoses and deaths had already peaked in the United States when protease inhibitors were introduced, but those numbers plummeted as more and more people took them after their diagnosis. The drugs hastened their declines.

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Between 1995 and 1998, just three years, the annual number of AIDS deaths dropped from more than 50,000 to about 20,000, according to the CDC. In 2019, there were 15,815 deaths among HIV-positive adults and adolescents in the United States, though these deaths may be due to any cause.

"What we see now is that as long as the patient stays on top of their medications and complies with their physician, their life expectancy is about the same as anybody else's," said Dr. Steven Do, an HIV treatment specialist with Community Health Net.

Weissbach hasn't worked in an HIV clinic for almost 20 years, but she still treats some HIV-positive patients in her infectious diseases office at Saint Vincent.

Those office visits aren't much different from any other patient.

"We are thrilled to have visits together," Weissbach said. "We talk about the old days and relish the new days. These patients are dear to me."

Stroz said his doctor visits are almost boring.

"We talk about things every 76-year-old talks about with their doctor," Stroz said. "How's my sugar? Things like that. I get bloodwork and take my medicine, but it's pretty routine."

A stigma about HIV/AIDS still exists

Living with HIV also has become a little easier emotionally, though a stigma persists, Stroz said.

Most of his friends and coworkers knew Stroz was gay and in a relationship, but he didn't share his HIV status with many of them until he agreed to be interviewed for this article.

"I'm finding out most of the stigma is in my head," Stroz said. "The one area I still see it was when I was navigating the dating scene. People on the dating apps still say things like, 'I'm clean' or 'D & D free,' for disease and drug-free.

"If you're insinuating that I'm dirty because I'm HIV-positive, the truth is that I'm safer to have sex with (because of his low viral loads) than the person who doesn't tell you anything or who lies," added Stroz, who moved back to Erie in 2014 because he "couldn't afford to move to New London, Connecticut."

Despite the availability of HIV pre-exposure pills that reduce the chance of transmission, people are still being diagnosed with the virus.

Thirteen Erie County residents have tested positive so far in 2022 and 22 tested positive in 2021, according to the Erie County Department of Health. The highest reported number of HIV diagnoses in a single year was 29 in 1996, according to the Pennsylvania Department of Health.

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"It's still out there. Anyone who is between the ages of 18 and 64 should be screened for HIV," said Leah Magagnotti, interim director of PA Thrive Partnership, formerly the Northwest Pennsylvania Rural AIDS Alliance. "We still need to educate people about HIV and how to protect themselves."

Though Stroz no longer considers himself an HIV/AIDS activist, he wants to share his message with younger people who are at risk for contracting the virus.

"It's frustrating to see the young people who don't take this seriously," Stroz said. "But then, we didn't take it seriously at first. Now I have a real appreciation for life. I'm grateful that I have lived this long."

If you think you might have HIV

Visit echiv.org to get an at-home HIV test kit or learn more about preventative medications.

Contact David Bruce at dbruce@timesnews.com. Follow him on Twitter @ETNBruce.

This article originally appeared on Erie Times-News: AIDS in Erie: At 40th anniversary, Don Stroz is thankful, healthy