PJ Gouldmann leaves his house only a few times a month. Lonely and isolated, he keeps his distance from friends and family. Without a car, getting to events has become more difficult and expensive. He relies on Zoom calls to fill his calendar.
Gouldmann, who said he has lived with HIV for nearly 40 years, has had to take more precautions during the COVID-19 pandemic because living with the condition puts him more at risk of contracting severe illness. Despite these obstacles, he calls himself one of the lucky ones.
The Northwest Baltimore resident has been able to take medication that has virally suppressed his HIV so that he can live with it without spreading it to others. He knows many others aren’t as fortunate as he is to have access to treatment.
“I’ve gone through multiple courses of treatment to keep me healthy, relatively speaking, and my concern is that there are those who are falling through the cracks,” Gouldmann said. “I worry about other people.”
Health care professionals are concerned that the pandemic, which forced job loss and squandered access to health care — particularly in the early months — will give rise to Gouldmann’s concerns.
Sexually transmitted infections rates are generally trending upward with the exception of chlamydia, which is slightly down, according to the latest figures from the U.S. Centers for Disease Control and Prevention. Experts say HIV rates tend to be high when other sexually transmitted infection rates are high. In Maryland, the rate of chlamydia, primary and secondary syphilis exceed the national rate of reported cases.
Though the most recent national statistics for HIV/AIDS and other sexually transmitted diseases have not yet been published, health officials in Maryland say they’re on guard. The pandemic made accessing medical care more difficult and forced cutbacks in outreach. At the state level, it tied up health care providers and contact tracers, subsumed the attention of researchers and data miners and disrupted what providers call the “continuum of care” for HIV patients.
The pandemic also forced cutbacks on HIV testing, which public health experts fear has exacerbated the spread of the virus in communities in the Baltimore area and elsewhere. The CDC will not be releasing estimates of new HIV infections for 2020 and 2021 due to the testing shortfalls; the federal agency is relying on 2019 numbers in 2022.
Adding to concerns is the rapid spread of the human monkeypox, a rare but contagious illness that has appeared in countries that normally don’t experience it and largely infecting men who have sex with men. The CDC says it is not historically considered a sexually transmitted infection but can be transmitted during sex. There are over 100 cases currently reported in Maryland.
“From a surveillance perspective, we’re flying blind right now,” said Chris Beyrer, the outgoing Desmond M. Tutu Professor of Public Health and Human Rights at the Johns Hopkins Bloomberg School of Public Health. “There are multiple factors in play that would suggest a worsening in many fronts. But we won’t know that until 2023.”
‘It felt like the HIV epidemic’
For some who lived through the HIV epidemic, the COVID-19 pandemic felt similar.
“It felt like the HIV epidemic at the beginning of the pandemic,” said Morris Murray, who lives in Locust Point and has been living with HIV since 1987. “I thought back to how much we didn’t know at the beginning of HIV, and I thought, ‘it’s going to be the same as this disease.’”
Some say U.S. officials repeated many of the same mistakes as during the peak of the HIV/AIDS epidemic.
Political leaders failed to take early action and misled a portion of the population about its causes and severity; both viruses, which can cause serious medical conditions and death, became stigmatized, politicized and divisive among the population. Inequalities in sickness, death and access to treatment became more pronounced as did disparities of race, class and geography.
The same could be said for human monkeypox, which has been spreading since at least May but was not declared a global public health emergency by the World Health Organization until July; the Biden administration has not declared a public health emergency in the U.S. Vaccinations are available but the supply has been too limited to meet demand.
“Our health system is broken, but we didn’t need COVID to tell us that,” said Mitchell Warren, executive director of AVAC, a global health and HIV advocacy and prevention organization. “For all the wonders of science, it does not end a pandemic if you don’t deliver it at scale, with urgency and with equity.”
Health care providers and HIV education and prevention advocates said their work, much of which centers on connecting people living with HIV to treatment and counseling services, shifted dramatically under the cloud of a pandemic. Those most marginalized became harder to reach amid shutdowns and stay-at-home orders. Basic services, such as walk-in hours at health care clinics and in-person support groups, got upended. The work became less sophisticated and individualized; survival mode took hold.
Lynda Dee, who heads AIDS Action Baltimore, said she knew from the onset of the pandemic in March 2020 that the HIV community would need to fight to get its voice heard.
She had some wins. Her group’s advocacy helped lead to inclusion of a small number of people living with HIV in COVID-19 vaccine trials, though ultimately not enough to qualify as a statistically significant sample. When the federal government released coronavirus vaccines to states in December 2020, Dee worked to ensure that people with HIV would be prioritized for early immunization access. And when a December 2021 ransomware attack crippled the state’s platform that enables individuals living with HIV to pay for life-saving viral suppressant medications, she worked with state officials to find workarounds (though officials say they are still processing applications for re-enrollment).
It’s all worthwhile, Dee said, to avoid the devastation, disease and destruction of years’ past.
“If I had to go through everyone I know getting sick and dying again, I couldn’t do it,” she said. “So, we tortured the government from jump street.”
Read with caution
The Maryland Department of Health declined to make officials available to comment about the risk of more HIV infections as a result of the public health crisis. But while HIV rates declined statewide during the pandemic — 724 people in Maryland were diagnosed with HIV in 2020, a nearly 22% decrease from 2019 — the department said in a series of reports those numbers should be taken with caution.
“Delays in testing, changes in testing modes and declines in linkage to care might be contributing to an otherwise encouraging picture,” according to one report.
The reports point to disproportionate rates in the Black community. In 2020, close to three-quarters of the state diagnoses were among Black people. Rates are twice as high among men. And Baltimore City and Prince George’s County had the highest rates of HIV diagnoses that year, one of the reports said.
Medical providers and advocates urge those who may be at risk of infection to get tested, especially if they stopped taking medications during the pandemic or engaged in new sexual activities.
“If you know your status, your life will be prolonged and you will not transmit the virus. That is spectacular,” AVAC’s Warren said. “I realize it can be nerve-wracking, but there is a way to stay healthy and positive or healthy and negative. Knowing your status is powerful.”
In Baltimore, the city’s health department anchored the response to the pandemic, but — like other public health entities throughout the country — was forced to trim other services.
Dr. Adena Greenbaum, assistant commissioner for clinical services and HIV/STD prevention at the Baltimore City Health Department, said the city agency understood the implications of cutting services to Baltimore, where about 20% live below the poverty line and which is more densely populated than other jurisdictions. Among the casualties of the cuts were HIV testing and outreach, Greenbaum said.
“We’re still being very vigilant about our STI rates and the rates of HIV and HIV suppression,” Greenbaum said about the cutbacks. “We’re concerned about the impact of the pandemic and what it might have on those rates.”
Greenbaum said the department reassigned its HIV contact tracers to the COVID-19 case investigation unit so they could train and share their experiences with others. It also reduced its walk-in services for clinical care and minimized the number of field visits into hard-hit communities; this is especially important, she said, for those who aren’t easily reached by phone.
All these barriers, Greenbaum said, could mean fewer people taking medication to suppress their viral loads or seeking out tests, which can contribute to community spread.
“Unstable housing, unstable access to food, issues related to unemployment issues, mental or behavioral health, substance abuse: so much can be wrapped up in being able to be on HIV medications,” she said. “Getting on medication is so important and one of the best ways individuals can protect themselves and others. But it’s easier said than done.”
To fill in the gaps, the health department relied on partner organizations to absorb some of the clinical case load and pivoted to telehealth services. It expanded at-home testing services and saw an increase in utilization. And it has begun an anti-stigma campaign aimed at groups at higher risk.
One of those partner organizations was Chase Brexton, a federally qualified health center in Baltimore that specializes in marginalized and medically underserved patients. Nurse practitioner Amit “Mickey” Dhir said some of his patients, many of them from low-income communities, had trouble staying on medication, especially when a ransomware attack hit the state health department in December and made medications unaffordable.
Others fell out of the routine when the country initially shut down, Dhir said, and are now testing positive for HIV. Some have stopped scheduling appointments altogether.
“Patients need care on the [HIV] positive and [HIV] negative side: the similar goal is to end the HIV epidemic,” Dhir said. “With medical centers shutting down, and staff shortages due to COVID, people were lost in follow-up care.”
Despite those losses, Dhir said Chase Brexton also is celebrating some success. The center launched telehealth services, which enables more interactions with people without access to health care centers; it fundraised to expand its medication delivery services to more patients; and its laboratory, walk-in clinic and in-person health care services stayed open while others shut their doors. It absorbed patients from elsewhere in the state, too, he added.
Dhir said Chase Brexton has ambitious goals: it wants to increase the more than 90% of its virally suppressed HIV patient population to 95%. And he would like to see an expansion of the walk-in clinic hours to include more late evenings and weekends to accommodate a more diverse crowd.
“I would hope we get the new statistics sooner, so we can scale up more,” Dhir said, “and do what what we need to do to end the epidemic.”