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‘We Just Lost Two Years.’ How COVID-19 Disrupted the Fight Against HIV

6 minute read

Before the COVID-19 pandemic, Andrés Cantero tried to see his doctor every three months to discuss his treatment for HIV. He’d visit four times per year, asking questions about his antiretroviral medication, discussing side effects, and confirming he still had an undetectable viral load, meaning he could not transmit the virus to his partner.

But in the two and a half years since the COVID-19 pandemic hit, Cantero, a 32-year-old lawyer in California, says he has only been able to see his doctor in person twice. It’s been difficult to get an appointment, he says, initially because of lockdown restrictions and now because many offices have transitioned to telehealth—an option he finds pales in comparison to the care he received before the pandemic. His routine for treating his HIV has been completely disrupted, he says, and he worries others have had similar experiences, particularly in communities of color like his own Latinx community.

“I think for some people, with the stigma that comes with HIV, you don’t feel comfortable having these conversations with someone you can’t see [in person] and develop this level of trust,” Cantero says. “With communities of color that already feel disenfranchised with the medical community… people are going to feel less enfranchised to engage with the sources that are available.”

A report released by the LGBTQ media advocacy group GLAAD on Oct. 6 and first reported by TIME suggests that Cantero’s situation is not unique. The report—which analyzes peer-reviewed scientific literature along with 26 interviews with both people living with HIV and staff at community-based organizations—found that the COVID-19 pandemic significantly disrupted HIV prevention measures and patient care in the United States. As COVID-19 precautions and lockdowns superseded other public health concerns, services for HIV patients became limited, communities grew hesitant about health-care services, and the rate at which HIV tests—one of the primary tools for fighting the virus’ spread—were administered dramatically declined.

In June, the U.S. Centers for Disease Control and Prevention (CDC) reported that from 2019 to 2020, new HIV diagnoses reported to the agency decreased by 17%. Another study published in the journal the Lancet Regional Health–Americas in March, which examined HIV testing and HIV-positive rates in health care systems in Louisiana, Minnesota, Rhode Island, and Washington, found that from 2019 to 2020, HIV testing numbers decreased by 68% to 97%, and remained 11% to 54% lower than prior rates after some pandemic-era restrictions were lifted. A third study of patients at a Boston community health center published in the Journal of the International Aids Society in 2020 found that initiations of PrEP—an antiretroviral medication that prevents HIV infection—decreased by 72% from January to April of that year.

The GLAAD report warns there is now a “real risk” of an HIV resurgence in the U.S. The authors of the report propose several changes to streamline the fight against HIV as new medical crises, such as monkeypox, emerge. “We just lost two years,” says Sarah Kate Ellis, president and CEO of GLAAD. “We need folks to look up, wake up, and realize that we as a community and a country can walk and chew gum at the same time. We can deal with a major pandemic while not forgetting about our most marginalized folks.”

Lessons learned

The COVID-19 pandemic and the HIV epidemic interact with each other in sometimes deadly ways, exacerbating the problems discussed in GLAAD’s report.

People with HIV are more likely than people without HIV to be immunocompromised, putting them at a greater risk of death and disease from COVID-19. (One study published in Scientific Reports in March 2021, for example, found that being positive for HIV was significantly associated with a high risk of mortality from COVID-19.) As with HIV, COVID-19 has disproportionately affected marginalized communities, and the virus’ negative impact has been exacerbated by systematic racism, stigma, and economic disenfranchisement, limiting access to adequate medical care. One study published February 2021 in the journal AIDS Reviews found that one HIV prevention and treatment clinic in New York City that had been seeing more than 2,000 patients face-to-face in early March 2020 had shrunk down to under 100 per day in May 2020. The clinic transitioned to telehealth, and the results were mixed—as they were with many clinics.

Telehealth made accessing care easier for many patients. One survey of 202 patients with HIV at a clinic in San Francisco, California, published in the journal AIDS Patient Care and STDs in July 2021, found that 80% of respondents said they were equally or more likely to attend a telehealth visit as an in-person appointment. But the transition wasn’t always easy, as patients dealt with technical issues, barriers in digital literacy, and their distrust of speaking about stigmatized issues in a digital setting. One survey published in the journal AIDS Research and Human Retroviruses examining a HIV clinic in Georgia from March to May 2020 found that 40% of the clinic’s patients who had used telemedicine experienced delays getting follow-up appointments, 35% reported difficulty getting their viral load measured, and 21% reported difficulty accessing antiretroviral therapy. “Telemedicine provides us with a variety of options and a variety of providers,” says Shanell McGoy, senior director of public affairs and corporate citizenship at the biopharmaceutical company Gilead Sciences, which provided grant support for GLAAD’s report. “But there’s nothing like that in-person connection that can be established between a provider and a client.”

The report warns that the disruptions in HIV care and prevention over the past two-plus years could be felt for many years to come. In September, the San Francisco Department of Public Health announced that for the first time in nine years, the city saw an increase in the number of HIV diagnoses made from the previous reporting year.

To address these setbacks, GLAAD lays out five lessons to learn from the COVID-19 pandemic as communities prepare for the next health crisis. First, they call for more funding from a variety of sources, particularly in communities that might have limited access to accurate information on the risk and prevention of HIV. They also urge providers to find ways to give consistent care, including having telehealth and in-person options, and to offer a variety of services in one location, rather than directing patients to new locations for different services. And they suggest a streamlining of public-health campaigns using clear, simple language that discuss both the COVID-19 vaccines and HIV prevention. One medical crisis need not eclipse the other, GLAAD argues.

“There’s this level of invisibility that’s surrounded HIV since [its] inception and came back to light during COVID,” says Cantero, the lawyer in California. When reflecting on the past two years, he says “COVID kind of took over,” and made any other concerns related to his health “take the back seat.”

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Write to Madeleine Carlisle at madeleine.carlisle@time.com