The White House’s COVID test program was, in one light, a triumph. On Jan. 18, the government launched a website enabling every U.S. household to order four free at-home kits. Sure, it had to be goaded into providing them after Jen Psaki’s “should we just send one to every American” gaffe. Yes, the program started after the omicron surge had reached its peak. And four tests per household? Good luck if you have roommates or kids.
But look at it this way: The government started sending out the tests a mere two years after the first reported U.S. COVID case. And, while the future of government COVID test funding is shaky, right now households can order another set of four free tests.
This is not how it worked with HIV, a virus that, like SARS-CoV-2, disproportionately affects marginalized communities and carries a ton of stigma. It’s been 10 years since the Food and Drug Administration approved home HIV tests (did you even know they existed?). About 1.2 million people in the U.S. are living with HIV, yet around 150,000 don’t know it. Given the federal government’s “Ending the HIV Epidemic” initiative, which includes a goal to diagnose everyone in the U.S. with HIV as early as possible, I’ve wondered: Shouldn’t we have a national program where anyone who needs an HIV test can have one mailed to their home?
Actually, we briefly did. And it was wildly popular, if fleeting. The fact that it took so long to start—and it’s unclear if it will ever start up again—shows just how far we have to go in making HIV screening a true priority.
Currently, there is just one home HIV test approved by the FDA, called OraQuick. It comes in a large plastic case—about the size of a hardcover book—that opens like a mini-briefcase. It unfolds into a workstation complete with notches that hold the testing equipment, a bound instruction manual, and an actual drawer that contains a reagent-filled test tube, a swab, and booklets to explain the results. These tests aren’t perfect; people are encouraged to confirm the results with a lab test. And, unlike COVID tests, they look for antibodies that can take up to 90 days to appear, so they might not work if you’ve been more recently exposed to HIV.
But they are very easy to use. Other than the fact that you swab your gums, it feels very similar to taking a COVID home test, including seeing the results 20 minutes later. And as a first step, they offer a clear advantage to visiting a clinic. “I feel like individuals just like the privacy and the convenience of the at-home test,” says Juan Lopez, the director of programs at Aunt Rita’s Foundation, which mails free at-home HIV tests to anyone who lives in Arizona. (If you buy the test at a drugstore, it costs $40.) In 2020, more than 85 percent of people who participated in the Aunt Rita’s program chose a free at-home test over the option to get free testing at a clinic.
Most importantly, mailing these tests reaches people who’ve never tested their HIV status, including people who are reluctant to face the stigma of getting an in-person test and those who live in communities without easy access to HIV services. A home test kit can be a gateway to those other services. A negative result is a good opportunity to discuss whether someone might benefit from taking PrEP, or preexposure prophylaxis, which is medicine that prevents getting HIV, explains Jen Hecht, the co-founder and director of Building Healthy Online Communities. A positive result tells people that they may need treatment. If a lab test confirms a positive result, that clinical visit should lead to beginning antiretroviral therapy, which makes HIV undetectable and untransmittable and enables people to live long, healthy lives.
In March 2020, just as COVID stay-at-home orders began, Hecht’s organization launched the website TakeMeHome.org to mail free HIV home tests to people across the U.S. Health departments can use TakeMeHome to send the tests to people who live in their jurisdictions. During its first year, TakeMeHome sent almost 5,000 tests to five states and 12 local jurisdictions. Of the people who responded to follow-up surveys, 36 percent had never been tested for HIV and 56 percent hadn’t been tested in over a year.
Last year, the Centers for Disease Control and Prevention launched a larger trial using the TakeMeHome platform. The agency planned to distribute 100,000 home HIV tests over 18 months to all 50 states, D.C., and Puerto Rico. It was in one way a success, because the tests reached groups of people the CDC considers “priority populations”: Black and Hispanic/Latino gay and bisexual men, cisgender Black women, and transgender women. These communities face more structural barriers to prevention and care programs, and as a result experience higher rates of infection.
Out of more than 57,000 people who ordered tests (some people ordered more than one test), 63 percent were non-Hispanic Black or Hispanic. Of nearly 14,000 cisgender women who ordered tests, 22 percent were Black. And the program reached nearly 850 transgender women. About a quarter of the orders were from people who’d never been tested, and a third hadn’t been tested in over a year.
But the program had a major flaw: It was temporary. The demand for the tests was so high they ran out after just eight months. The high demand should have prompted the CDC to develop an ongoing program. But so far, the agency hasn’t.
I asked if the CDC intended to create similar programs moving forward. “CDC will apply the many lessons learned from this activity to future efforts for reaching people who experience barriers to accessing HIV prevention services,” Pollyanna Chavez, an epidemiologist in the CDC’s HIV division, wrote. Later, over the phone, she didn’t specify how they’d apply lessons other than continuing to encourage state and local health departments to use home testing programs “as one of the many tools in the toolbox for improving HIV prevention.”
But a system that relies on local departments for a crucial tool creates a patchwork that leaves some folks to fall through the cracks.
Natalie Cramer, deputy executive director of programs at the National Alliance of State and Territorial AIDS Directors, noted that each health department has its own way of doing things. That makes sense because they’re serving different communities and have different staffing levels. (Local efforts can also be highly personal: Lopez, for example, includes his own contact information in tests mailed to Arizonans.) But ultimately, those differences could lead to nationwide disparities in the ability to access home testing. For example, some departments allow people to order tests every 90 days, while others limit ordering frequency to no more than once per year (which could be a matter of funding rather than philosophy). And some areas don’t offer home test kits at all. A national test kit program would fill in these gaps and complement the services that already exist.
Though cost is a hurdle to implementing a national home test program, the CDC estimates that average lifetime health care costs are $420,000 higher for people with HIV than for those without HIV. So preventing additional infections would pay for a lot of $40 home tests. Furthermore, as we’ve seen with COVID, the government can act to reduce costs associated with HIV tests. Mandating that health insurance plans cover them, as the Biden administration did with COVID home tests, could reduce the pool of people who relied on a national government program. The FDA could also approve more HIV home tests; the European Union has approved three. That could increase competition, which would help lower costs.
Many lessons from the HIV epidemic helped us adapt to the COVID pandemic. One of the most important examples is how HIV research paved the way to developing COVID mRNA vaccines. Now let’s take what we’ve learned from COVID and apply it to HIV. Home testing has become a mundane, everyday occurrence. It’s the perfect time for HIV home testing to become normal as well.
