Poz Advocate: COVID preparedness for people living with HIV

Hello, POSITIVELY AWARE readers! I am excited to be launching this column exploring legal issues of importance to people living with HIV. Over more than a decade as the HIV Project Director at Lambda Legal, I have learned about the specific legal problems that people living with HIV face.

While there has been tremendous progress in protecting and advancing our rights as people living with HIV, there are always new challenges. This inaugural column is going to focus on the latest challenge: COVID-19. Here are a couple of important things to keep in mind as we continue to stare down this life-threatening pandemic:

It is more important than ever to be adherent to your HIV medications—or to get on HIV medications if you are not already. There are no studies indicating that people with HIV who have a non-suppressed viral load or who have a reduced CD4 count are at a greater risk for COVID-19 or more severe consequences from it, but it is possible that they are. And as far as researchers can tell so far, those with a suppressed viral load and normal CD4 count are not at any increased risk with respect to COVID-19. We should be doing all we can to put ourselves in that second category right now. Do all you can to keep yourself otherwise healthy. Better safe than sorry!

Some of us are going to get COVID-19. While researchers have not documented an increased risk for people living with HIV, they also have not established any immunity conferred by being HIV-positive or from taking antiretroviral medications. There were some theories toward the beginning of the pandemic that some HIV medications might be useful as a treatment for COVID-19, but none of those theories have yet panned out. More studies are underway and recommendations are constantly evolving as scientists learn more; but until you hear definitively otherwise, you should not assume that your HIV medications are going to protect you from COVID.

In fact, I can attest to this myself: I was diagnosed with COVID-19 in late July. Fortunately, I had a very mild case (which nonetheless included the loss of my sense of taste and smell) and bounced back quickly. Part of what prevented me from freaking out after my diagnosis was knowing I am in overall good health and that my well-controlled HIV did not put me at a greater risk of severe disease (see first point above). Knowledge is power! 

Know your rights. Even people with good insurance and solid access to healthcare have experienced obstacles to timely COVID-19 testing and results. Personally, I ended up going to a COVID testing site when I learned it was going to take a week to get even a telehealth appointment with my regular doctor. You may not be able to control the length of time it takes to get results, but you should be able to get a COVID test relatively quickly if you have symptoms. Even if you don’t have a way of paying for it right now, call your local health department and ask about free COVID testing. Be insistent about your right to learn this important information. 

If diagnosed with COVID-19, especially if experiencing more severe disease and potentially entering a hospital for treatment, you may want to review this guide, “Know Your Rights: HIV & COVID-19” put out by Lambda Legal and The AIDS Institute (lambdalegal.org/publications/kyr_covid19-hiv). Many people—even doctors—have the misperception that all people living with HIV are at greater risk with respect to COVID-19. The “Know Your Rights” factsheet recommends asking questions about potential rationing of care, designating a friend or family member to look out for your best interests, and reaching out to Lambda Legal if you think the care you receive may be negatively impacted by your HIV status. People with HIV are not second-class health care consumers and should not be deprioritized based on the erroneous perception that we are not as likely to benefit from care.

One thing people living with HIV learned many years ago—and taught the world—is that we have power as health care consumers. This new pandemic, involving yet another potentially fatal disease, is an opportunity to put those important lessons to use. Together we will get through this latest pandemic, just as we are (incrementally) winning the battle against HIV.

Scott Schoettes lives openly with HIV and is the HIV Project Director at Lambda Legal, where he engages in impact litigation, public policy work, and education to protect, enhance, and advance the rights of everyone living with HIV.

Keep up with every Poz Advocate column in PA at positivelyaware.com/pozadvocate.