HIV Care Then & Now
August 20, 2020
Partnership doctors reflect on HIV care then and now.
Things look much different for HIV-positive patients at the Partnership Comprehensive Care Practice today than they did when it was founded in 1993.
"I think there's a lot of reassurance we could give within the dominant discourse around HIV about how we consider this a chronic condition, not too dissimilar from other chronic conditions," said Elliot Goodenough, MD, PhD, who recently joined the Partnership team. "Having an HIV-positive result doesn't mean anything necessarily alarming. HIV is a pretty manageable thing most of the time."
According to Dr. Goodenough, HIV specialists at the Partnership help patients understand their diagnosis and treatment options and to identify supportive people in their life with whom they can discuss their diagnosis. Specialists continue supporting patients through follow-up appointments as well.
"There's a number of HIV organizations in Philly," Dr. Goodenough said. "There's a lot of HIV specialists, and we're available to catch people as they're interested in entering care, ideally early after diagnosis."
As an HIV specialist who entered the field after some groundbreaking shifts in HIV medicine had already been made, Dr. Goodenough said they are grateful to learn from health care providers who were on the front lines of the crisis from its earliest days.
"I hold so much respect for folks who have been around for that long," they said. "HIV medicine looks very different now than it used to look."
Having an HIV-positive result doesn't mean anything necessarily alarming. HIV is a pretty manageable thing most of the time.
Among other advances in care, people at high risk of HIV infection can work with Partnership physicians to get on and stay on PrEP, a daily medication to help prevent HIV acquisition.
Additionally, the Partnership strives to spread the message of the U=U or "undetectable = untransmittable" campaign. Effective, ongoing treatment can lower the level of the virus in an HIV-positive patient’s blood to an undetectable level, which in turn means the patient cannot transmit the virus to an HIV-negative person. On its website, the Partnership calls U=U "the next best thing to a cure, given its positive impact on patients’ relationships, mental health, and more."
More than a decade before she would found the Partnership, Marla Gold, MD, began her medical education in Newark, NJ.
"By the time I entered medical school in 1981, HIV was well along on the scene," Dr. Gold said.
During her clinical education at a Newark hospital, Dr. Gold saw a major influx of younger patients – mainly people who used drugs or men who had sex with men – presenting with and often dying from unusual diseases. These populations hadn’t been considered at risk before for the cancer Kaposi Sarcoma, or for pneumocystis pneumonia, and suddenly they were.
It wasn’t until 1983, Dr. Gold said, that physicians could say it was HIV that was weakening patients’ infection-fighting blood cells and making them susceptible to "opportunistic infections" they wouldn’t have otherwise.
"We should compare this right now with COVID-19. With COVID-19, we knew immediately that it was a coronavirus and had the genetics," Dr. Gold said. "With HIV it was: the outbreak begins, and we have no idea what’s causing it. There was no governmental response – none, because the people getting HIV were expendable, essentially, to the government."
In 1985, the first HIV test was licensed, four years after physicians began reporting cases. Rather than leading to treatment – none had been discovered yet – an HIV diagnosis could cause further hardship for a patient.
In the mid-eighties, what you got for your trouble of finding out you were positive was evicted from your apartment if you had one, fired from your job if you had one. You had nothing. You were ostracized by your family. The stigma was incredible.
"In the mid-eighties, what you got for your trouble of finding out you were positive was evicted from your apartment if you had one, fired from your job if you had one," Dr. Gold said. "You had nothing. You were ostracized by your family. The stigma was incredible."
By the time a patient with HIV was diagnosed with an opportunistic infection, they typically had about a year left to live. Many of these people had long avoided traditional health care because of stigma.
"Gay and bisexual men, poverty aside and without labeling too much, if anything were getting general care at sexually transmitted disease clinics where they could be cured of whatever ailment and go on their way – I say this with love as a lesbian."
"What was happening suddenly is these same people, my brothers, if you will, were coming to a hospital with end-stage disease, to physicians and nurses who had their own stigmas about the very people who were coming in," Dr. Gold explained.
Although they were statistically more likely to have been to the hospital prior to an opportunistic infection, patients with substance use disorder also faced stigma from many physicians.
"They were treated like less than," Dr. Gold said. "The demographics in Newark among people who used intravenous drugs, there was a preponderance of people of color. Looking back on why that was, I can't say that at the time everyone identified racism and poverty the way that we do now. But those of us who trained in the early years, we knew and we saw it."
Physicians who were members of the LGBTQ+ community, Dr. Gold included, were often the ones who stepped up to treat HIV-positive patients when other physicians balked due to fear of contagion, stigma or both.
"What happened is the first system that was set up to care for people with HIV was mainly a system to help them die," Dr. Gold said. "I don't mean kill them. I mean hold their hands, help them get insurance policies, bring them food, get them lawyers. Medicine did very little, because there was very little intervention available."
HIV care became medicalized in the late 1980s, with patients taking a drug called AZT at four-hour intervals. Other drugs, often with major side-effects, were discovered and even combined with AZT to treat HIV. Physicians prescribed antibiotics to patients to prevent opportunistic infections.
"Around then, in the nineties, early data showed that something else helping people with HIV live were physicians who were experienced in caring for them. The more patients you cared for with HIV, the better the outcomes were," Dr. Gold said. "That shouldn't be surprising, but the data was very persuasive and that made more centers of care blossom."
Families that had previously disowned HIV-positive relatives were now encouraging them to seek treatment, and as HIV-positive patients began living longer the demand for outpatient treatment rose.
From 1990 until about 1993, Dr. Gold served as the City of Philadelphia’s Assistant Health Commissioner, making her well aware of the need for a one-stop shop for HIV-positive patients in need of testing, treatment, help maintaining a complicated medication regimen, help finding insurance or nutrition assistance, and more.
In 1993, Dr. Gold received the first grant funding for the Partnership, which opened its doors shortly thereafter.
She was working at the time for the Medical College of Pennsylvania (MCP), a College of Medicine legacy school, and the Partnership first launched clinics at MCP and a handful of affiliated hospitals.
"It was a partnership between hospitals that would normally compete for funds. That’s where the name comes from," she said.
As the community’s need for HIV care rose and grant funding became increasingly available, Dr. Gold realized the Partnership’s various sites needed to come together. The original practice opened one floor above its current location in a building at 1427 Vine Street.
At first, Dr. Gold and her colleagues in HIV medicine – the physicians, case workers, pharmacists, nutritionists and others – felt like their main goal was helping patients survive until the next wave of more streamlined, safer therapies came.
As the nineties went on, the Partnership team added preventive care like mammograms and colonoscopies, as well as mental health and family planning services, to better meet the needs that developed as patients lived longer lives with HIV.
"The disease increasingly became a disease of people in poverty, people experiencing homelessness, and it’s a racialized disease," Dr. Gold said. "Today, the services that get added are added to care for patient populations as best we can. The drugs that are used to treat HIV are used much earlier."
The Partnership offers HIV treatments with minimal side effects, preventive medications for people who are at risk of getting HIV, and more. Dr. Gold said it is common nowadays for HIV-positive patients to live into their 80s or 90s.
The system went from caring and supporting you as you died, to keeping you alive, to helping you thrive
"The system went from caring and supporting you as you died, to keeping you alive, to helping you thrive," she said. "That's amazing, but there are also those feelings of how many people are gone and lost their lives."
Even with advances in testing and care, the United States has about 40,000 new cases of HIV every year and rates of HIV infection and AIDS diagnoses are on the rise due to the opioid epidemic, according to Dr. Gold.
She said HIV and AIDS are best thought of as multiple epidemics affecting multiple communities, each in need of sustained, tailored intervention.
"Of course, when you fight homelessness, you're fighting HIV. And when you fight racism, you're fighting HIV. When you fight poverty, you're fighting HIV," she said. "So the underlying social determinants that set up HIV to land and do its thing, similar to COVID-19, are still operating. As long as that is, we’ll continue to see a lot of the same things."
A major need remains to help people get tested for HIV and start a regular course of treatment. Individuals in need of HIV testing, counseling or follow-up care are encouraged to contact the Partnership online.
The information on these pages is provided for general information only and should not be used for diagnosis or treatment, or as a substitute for consultation with a physician or health care professional. If you have specific questions or concerns about your health, you should consult your health care professional.
The images being used are for illustrative purposes only; any person depicted is a model.
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