Why At-Home HIV Testing Could be a Game Changer for Key Groups 

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HIV testing significantly declined during the COVID-19 pandemic and has still not returned to pre-COVID numbers. Health experts believe at-home HIV tests could help improve this concerning trend, especially among high risk groups. mixetto/Getty Images
  • HIV testing and care were severely disrupted during the COVID-19 pandemic.
  • HIV testing has significantly declined since 2019, especially among populations with elevated risks such as LGBTQIA+ people, people of color, and those with lower socioeconomic status.
  • Though COVID-19 restrictions have eased, testing numbers have not returned to pre-pandemic levels.
  • Health experts say at-home HIV tests could be a significant tool in helping improve this concerning trend.

It’s been well documented that the COVID-19 pandemic upended adherence to routine medical visits and care for many people, causing chronic conditions to go unchecked.

Among these drop-offs in everything from cancer screenings to colonoscopies, experts say the past two years have seen a dip in regular HIV testing.

This has been especially true in populations with elevated risk for HIV, such as LGBTQIA+ people, people of color, and those who have lower socioeconomic status.

Healthline spoke with several experts, from infectious disease clinicians to individuals making strides in at-home, self-administered testing, about where we are today with the state of HIV testing, and what more needs to be done.

This spring, the Centers for Disease Control and Prevention (CDC) released its 2020 HIV surveillance report, which highlights where the U.S. is today in its goals of better treating and ultimately eradicating HIV in the nation.

Right at the top of the report, the CDC emphasizes that data from the year 2020 need to be “interpreted with caution due to the impact of the COVID-19 pandemic on access to HIV testing, care-related services, and case surveillance activities in state and local jurisdictions.”

One reason that accounts for this is the steep drop in HIV diagnoses from the pre-pandemic era to 2020. For instance, since 2016, HIV diagnoses declined at a steady rate — no more than 3 percent each year.

HIV diagnoses dropped sharply by 17 percent from 2019 to 2020. The CDC says this is mostly due to “disruptions in clinical care, hesitancy in accessing healthcare services, and shortages in materials for HIV tests” during the height of the pandemic.

The surveillance report shows that gay, bisexual, and other men who have sex with men are the population most affected by HIV, accounting for 68 percent of new diagnoses in 2020. When it comes to which ethnic groups had the most diagnoses, Black Americans made up 42 percent of those new 2020 cases, followed by Hispanic and Latino people at 27 percent, and white people at 26 percent, among the groups most affected.

A June CDC report analyzing the drop off of new cases from 2019 to 2020 reveals that the 17 percent decrease in diagnoses between those two years “was preceded by decreases in HIV testing during the same period, particularly among priority populations including Black or African American (Black) gay men, Hispanic or Latino (Hispanic) gay men, bisexual men, other men who have sex with men (MSM), and transgender persons.”

Overall, the report shows a decrease of 42.6 percent in HIV testing in healthcare settings and a decrease of 49.5 percent in non-healthcare settings in 2020 compared to 2019.

Stark decreases were seen in non-healthcare settings. Men who have sex with men saw a decline in HIV testing in these settings by 49.2 percent, followed by transgender people at 47.3 percent, Hispanic people at 46.3 percent, and Black people at 44.1 percent.

Dr. James Hekman, medical director of Cleveland Clinic’s Lakewood Family Health Center and an internal medicine physician with a special interest in HIV, preventive health and LGBTQ+ health, said HIV testing has still not returned to pre-pandemic levels.

Hekman told Healthline the “preexisting disparities” that hit those most impacted by HIV “are still there” in this current phase of the pandemic.

These vulnerable populations were most likely to lose their jobs, experience isolation, and deal with mental health issues at higher rates during COVID-19, which have persisted while society still reckons with how to “open back up” and reengage with pre-COVID life even as the health crisis continues, he said.

“All of that persists but then there are also general access [to healthcare] concerns that we’ve known these populations to have for a long time,” Hekman added. “A lot of that has been enhanced and magnified.”

In the June report, the CDC said that in addition to HIV testing, other related services like STI testing and administering pre-exposure prophylaxis (PrEP) — a treatment of daily medications for people who are HIV negative that can reduce their HIV risk from sex by more than 90 percent — have also declined during the pandemic.

As part of PrEP treatment, people who go on the preventive medication have to go in for regular HIV screenings from a healthcare professional.

A January 2022 study estimated that there was a 22 percent reduction in PrEP prescriptions after the national emergency declaration at the height of COVID-19 was made.

“The COVID-19 pandemic disrupted an increasing trend in PrEP prescriptions in the United States, highlighting the need for innovative interventions to maintain access to HIV-prevention services during similar emergencies,” the study authors wrote in their conclusions.

When asked about how COVID-19 impacted HIV preventive measures like PrEP, Hekman explained that he thinks many people still continued their regular PrEP regimen during the pandemic.

That being said, due to the fact that “everyone was isolating and social distancing,” he added that “a lot of people didn’t feel the need” to stay on the medication for a sustained period of time.

Once restrictions lifted, many resumed their medications, but just as there’s been lag to get people back to regular HIV screenings, a general disruption in PrEP adherence has persisted, he added.

With this reluctance to head back to the original routine of in-person HIV screenings at clinics and doctors’ offices, some health experts see at-home, self-testing as one potential answer to the problem.

Enter Ash Wellness, an at-home diagnostics and testing company, which offers a range of tests through their platform including HIV and other STI testing, PrEP, hormones, and COVID-19 testing, among others. They work with CLIA/CAP-certified labs nationwide to process the tests.

Recently, the company announced its first partnership with a governmental body, working with the Fulton County Board of Health in Atlanta, Georgia, to expand access to free HIV/STI testing services by way of a virtual portal. The goal is to reach underserved populations, part of the county’s StopHIVATL initiative.

This kind of partnership is in keeping with Ash Wellness’s overall vision of offering a more inclusive and accessible approach to needed health screenings, especially HIV, David Stein, the company’s CEO and co-founder, told Healthline.

Stein said the company was launched about two and a half years ago, born out of a grad school program at Cornell Tech, with “its queer and LGBTQ+ founders” aiming to “make sexual health more inclusive and accessible” for other members of their greater community.

The timing was certainly significant. Their services went live right as COVID-19 hit.

“We were launching an STI testing kit to a nation that was being told to stay home, to isolate, and not touch each other,” Stein explained.

Stein said that for the first few months the demand for services like those provided by his company did decrease. However, he and his team soon recognized that the global health crisis offered an important niche Ash Wellness could fill.

He said they pivoted to working with organizations, public health departments, universities, and private healthcare systems, among others, to spread the word and maximize Ash Welnness’s at-home testing.

He said, despite a dark time for the nation and the world, COVID-19 “popularized at-home testing for the masses.” The pandemic forced healthcare to transition from “the hospital to the home” and he said that it forced people to come to terms with how they could make managing their health work for the demands of their day-to-day lives.

He sees the Fulton County collaboration as a powerful model to offer free at-home testing kits to those who need them most.

Stein said Ash Wellness is “currently in the works” with partnering with other public health departments across the country,” something that he feels can especially help minority and rural populations that aren’t always geographically close to clinics and healthcare centers typically accessible in larger cities.

Stein said the positive response his company has received so far underscores the fact that, even pre-pandemic, people don’t feel comfortable going in for STI and HIV testing.

“They don’t feel comfortable going to their clinicians and talking about sex or asking to be tested,” he stressed. “The reason people aren’t going back is that they never felt comfortable in the first place.”

“Doing this testing at home makes it a lot more accessible, with adherence to getting tested and staying on PrEP higher as a result,” he added.

However, as useful a tool as at-home testing can be, Hekman pointed out that it does have disadvantages as well, including the face-to-face time between healthcare professionals and patients that is lost.

“You lose the ability to do meaningful counseling in many cases and also a visual inspection that is clear and done by examination. That has been harder to do remotely,” he said. “But, there is a niche for [at-home testing], for a subset of people who have barriers to access.”

The CDC also recommends that those who receive a positive result on a self (home) test should still see their doctor to have the result confirmed through follow-up testing.

At-home testing for HIV is becoming more widely available abroad, too.

Todd Malone, managing director and executive vice president of BroadReach Health Development, has worked and lived in Africa for more than 20 years, many of them spent implementing HIV projects.

He recently co-authored a study that looked at the distribution of HIV self-testing kits to male partners of women living with HIV in Mpumalanga, South Africa.

Given that South African men are underrepresented in HIV testing and treatment services, Malone and his team wanted to see if the distribution of oral HIV self-test kits by women living with HIV to their male partners could increase rates of male testing and treatment in the area.

Ultimately, this pilot study was found to be effective in improving test adherence among the men in this community.

Malone told Healthline that self-testing has been effective for the communities he’s been working with, especially when it comes to men who he said are “quite frankly very hard to reach in somewhere like South Africa.”

“I am a huge fan of providing lots of different options for people that work. Some people go into a facility and have no problem, could be emotionally no issue — they might have their own car, time off work, flexibility, whatever,” Malone said. “Other people have all kinds of challenges. It might be a personal thing, might be an environmental issue they face, a structural issue. So, let’s figure out how we can serve them.”

“I think self-testing is important,” he added. “I think we need to absolutely support self-testing, whether for HIV or COVID, or any possible infection, for those people that need access in a way that would work for them.”

Hekman pointed out that, as we emerge from the COVID-19 pandemic, some might be struggling to embrace a “return” to “pre-pandemic life.”

“Some of them might be finding it difficult to get back on track,” he said, noting this could “limit their financial support for regular office visits and testing,” for example.

“I think intersectionality issues are a big concern, specifically for LGBTQ people of color who have a heightened impact with the pandemic. They are more likely to have lost someone [during the pandemic], they are dealing with problems associated with less trust, less likely to trust the vaccine, they may have continuing struggles with being able to come into a clinic in person,” he added.

These larger, systemic issues filter down to things like HIV testing, exacerbating serious public health problems that existed before COVID-19.

Hekman said in order to improve rates of HIV testing and treatment, the healthcare system and society at large have to start addressing these inequities — and implementing more tools like at-home testing can help make quality healthcare more accessible.

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