A good start: take testing and prevention out of the clinic and meet people where they are
Both HIV infections and AIDS deaths have dropped steadily, and this is worthy of celebration. Nonetheless, there are new infections every day here in the U.S. and around the world. In spite of treatments and PrEP, there are still so many lacking access and education around HIV and its prevention. Here at Nurx, where we order home HIV tests and prescribe PrEP, we have to inform a newly infected HIV patient of their status at least twice a week, or about 100 times a year. This is never an easy call to make.
We often hear people ask if HIV even still exists, which makes us angry—not at the person asking the question, but at the public health authorities and media silence around HIV. In the U.S., there are approximately 1.2 million people living with HIV and 14 percent of them do not know that they have it. Lack of testing and persistence of stigma keep this population in the shadows.
In 2018 the approximately 36,400 new HIV infections in the United States were mostly in Southern states and not evenly distributed across the population. This is because testing, prevention and treatment are not reaching those who need it most: men who have sex with men, Black and Latinx Americans and transgender people. That being said, education must be shared with all groups as statistics don’t matter when it’s you who is affected, and we often fail women when we leave them out of the discussion. Whenever we have to tell a cisgender woman that she is HIV positive, she is completely shocked and often never thought that this was even a possibility. These are women like a student at a prestigious university who was so sick she had full-blown AIDS by the time she was diagnosed but none of the (many) doctors she’d consulted about her illness had thought to test her for HIV. Or the divorced grandmother in her 60s who contracted HIV from a single sexual encounter at her college reunion.
After what we’ve witnessed this past year, it’s hard to not see HIV’s persistence in the U.S. as a failure of will. COVID showed that our health care system can rapidly re-organize to create drive-through testing centers in sports stadiums, a warp-speed vaccine effort, and public education efforts that had everyone talking about antibodies, antigens and viral load as easily as they’d once chatted about the weather. We can certainly exert the much less disruptive effort required to end HIV. Here’s how:
- Test, test, test. With COVID, we saw that frequent testing, including that of asymptomatic people and especially those working or living in high-risk environments, was essential to containing the virus until a vaccine came along. Medical providers should assume that patients need HIV testing, unless they know otherwise. Medical providers often don’t offer HIV testing to patients who they assume aren’t at risk, and patients don’t know to ask. Going forward, we should think more like the University of Chicago Medical Center, which set up a combination HIV/COVID testing site for the public during the pandemic.
- Destigmatize. Health care providers didn’t judge or shame people for COVID infection—whether they caught it working an essential job or attending a high-risk social gathering out of a human need for interpersonal connection. Similarly, we should destigmatize HIV and the ways people contract it. Health care providers can be uncomfortable talking about sex, and when their schedules only allow for 15 minutes per patient, there may be “no time” to have the crucial conversations about a patient’s sex life. The combination of these two things may leave the patient without the care that they should get, within a system that doesn’t normalize and prioritize sexual health as an essential component of comprehensive care. All people should be asked about their sexual health so they can get tested for HIV at the frequency that’s right for them, and be prescribed PrEP if their sex life puts them at risk of HIV.
- Meet people where they are. During COVID, we’ve brought tests and vaccines to stadiums, schools, supermarkets and more—so let’s make HIV prevention and treatment that easy by taking testing and prevention outside of the clinic and meeting people where they are. Patients who need HIV testing and prevention have to jump through too many hoops to get care. The first hoop is finding a provider that they can trust. Imagine living in a small town where everyone knows you and your family, or where the lab technician or pharmacist is also a member of your church community. The shame and fear associated with sex prevent many from seeking care face-to-face.
One essential way to bring informed, nonjudgmental HIV prevention to the people is through telehealth. Telehealth allows them to reach out to a medical provider any time, day or night, from their ever-present smartphone to request an HIV test or a prescription for PrEP. Telehealth allows a patient who thinks they might need an HIV test, or who is interested in PrEP, to make that request as soon as they think of it and feel empowered to do so—no looking for a clinic, waiting for an appointment, taking time off of work for it, or letting shame or stigma lead them to cancel the appointment. At-home HIV tests and PrEP medication can then be sent to the patient’s door in discreet packaging, and communications with medical providers can happen in the comfort and convenience of the patient’s home.
But to fulfill the potential of telehealth to make HIV prevention accessible, we need policy changes. One is to change laws that prohibit telehealth providers from providing care across state lines. Acknowledging that medical providers can effectively provide preventive care to patients across state lines or time zones will improve access to the best HIV care (often concentrated in the cities) to those who need it most (those in poor, rural areas). During the pandemic, those requirements were waived, dramatically reducing the burden on clinics and keeping patients at home when that was the safest place to be.
Another way to make this lifesaving and cost-saving care more accessible is to improve telehealth reimbursements. State laws that require care to begin in the clinic, or for a patient to have a prior relationship with a medical provider before telehealth can be provided or will be reimbursed, create an often insurmountable barrier to access for populations that need it most, face stigma and in many cases are at greater risk of HIV.
The city of San Francisco experienced especially low rates of COVID as compared to other dense cities, which has been attributed to a public health infrastructure that learned hard lessons from the AIDS epidemic and was prepared to sound the alarm early, test and contract trace when a new virus emerged. Now let’s flip that and take what the health system as a whole has learned from COVID and apply it to speeding the end of HIV in all communities around the country.
This is an opinion and analysis article; the views expressed by the author or authors are not necessarily those of Scientific American.