“This ain’t no party,” sang David Byrne and the Talking Heads on the 1979 hit, “Life During Wartime.” COVID-19 ain’t no party, either. The coronavirus lockdown has put strains on every aspect of our lives. Health during lockdown has been a particular challenge, especially for people with chronic conditions, including people living with HIV.
In June, a survey conducted by the Global Fund to Fight AIDS, Tuberculosis, and Malaria found that 85% of HIV programs worldwide suffered disruptions to service delivery, with 18% experiencing high or very high levels of disruption. In July, 73 countries told the World Health Organization (WHO) that they risked running out of antiretroviral (ARV) medications because of COVID-19, while 24 countries said they had critically low stocks or supply disruptions. In August, the Pan American Health Organization (PAHO) stated that 30% of people living with HIV were avoiding seeking care, and that supplies of ARVs were limited. Also in August, PAHO Director Carissa Etienne said that 11 countries in the Americas had less than a three-month supply of ARVs. “The Americas are at risk of losing years of health gains in a matter of months,” Etienne told reporters. Experts assembled by the WHO and UNAIDS estimated that a six-month disruption to services and supplies during the pandemic could lead to some 500,000 additional AIDS-related deaths in sub-Saharan Africa.
Even in well-resourced countries, continuity of care for people with HIV has been affected by the COVID-19 crisis. Early in the pandemic, as shelter-in-place and social-distancing guidelines fell into place, community-based organizations closed, clinics and other medical facilities transitioned to telemedicine, and many medical workers were redeployed from primary care to COVID-19 units in hospitals.
TheBody used social media and messaging platforms to ask people living with HIV about their health care experiences during the pandemic. Some reported smooth sailing. “My doctor is doing telehealth sessions,” Julene in Seattle said. “It has not affected my meds or any of my medical follow-up so far.” Oliver in Manchester, UK, said, “The lockdown has had no impact on my HIV care at all, other than I got to see a doctor when I went for my blood work, which saved me a trip.” Others, however, have had a tougher row to hoe. I myself am living with HIV, and for the first few months, the community-based clinic where I get my HIV care was not answering the phone at all. Friends who receive their care at the same clinic told me that the staff was very responsive to messages sent via the online patient portal; but I could not access the portal—I seemed to have an account, but I did not know my username or password, and I was locked out of the system. Whether for reasons of HIPAA compliance or just bad user-experience design, the portal gave me no option to provide my Social Security number, date of birth, or other identifying information to gain access or reset my login.
As my medication refills dwindled, I grew increasingly concerned. I went so far as to seek care at a “competing” HIV specialty clinic here in New York. I had gone through the intake process and was scheduled for my first telemedicine appointment when I finally got through to my current clinic on the phone. By that time, I was seeking testing and treatment for a possible sexually transmitted infection—a contact of mine informed me that he had tested positive and was being treated, and suggested that I should do the same. This was in the first half of July. My clinic was conducting in-person urgent care visits, so I was able to come in for the testing and treatment I needed, as well as for my routine, quarterly blood work. Since then, I have been able to get them on the phone to request prescription refills and renewals. Some of my medications are controlled substances—testosterone, for example—that have to be renewed each month, with no refills.
Some of the greatest challenges to health care during lockdown for people with HIV come from issues not directly related to HIV, such as mental health. “At the beginning of the lockdown, I was too depressed to do anything,” Luis, a community gardener and part-time yoga teacher in New York, told me on WhatsApp. “Later, I started doing 15 to 30 minutes a day of low-impact cardio, but I have not been consistent. Depression gets in the way. I started giving some yoga classes on Zoom, which helps financially and helps keep me occupied.” But lockdown has also affected Luis’ primary HIV health care. “I haven’t seen my primary-care physician since about January,” Luis said. Luis said he’s spoken to his primary-care physician once on the phone since January and hasn’t had blood work since about then. “I did not want to go to another clinic or the hospital to get my blood work done like they suggest that I do, and then have them fax it to my doctor,” he said. “Too much trouble for my panic disorder.”
Like other people with HIV over 50, Luis has certain routine medical follow-up needs; these too have been complicated by the pandemic. “I’m due for a colonoscopy, but I have not been able to get that done.” Luis takes both ART meds and psych meds. “At the beginning, I did have some trouble getting my meds, because they had to be mailed. I’m picking them up at the pharmacy now and it’s easier. I have to call the pharmacy first, but they come out and give it to me on the sidewalk. I haven’t neglected to take my psych meds consciously, though I have forgotten on occasion. I am also less interested in keeping up with my HIV regimen.” Many people with HIV struggle with anxiety, depression, insomnia, fear, and panic on a regular basis. Lockdown has made dealing with these issues more difficult, both because the pandemic itself is inherently stressful and because mental health services, including medications, have become less available and less accessible during the pandemic.
Isolation is another mental health issue that affects many people living with HIV, and that has been exacerbated by the pandemic. Prior to the lockdown, Scott from Tennessee volunteered for his local hospital two days a week, where his set hours gave him a routine. He would take his HIV meds on that routine. After he was furloughed in March, he’s spent the past six months at home trying to stay occupied. “There have been days to where I have actually forgotten to take my HIV meds, because of being out of my normally routine and disciplined day schedule,” he said. “Luckily, I remembered, but often it may be six or more hours later. So yes, in this area, it has greatly impacted me.” The pandemic has also made it more difficult to see loved ones, adding to the mental health impact of isolation for many. “The lockdown has prevented me from visiting my 90-year-old mother and disabled sister, both whom live in a long-term care facility that has been on lockdown since early March,” Scott reported.
The COVID-19 pandemic prompted a sea change for health care professionals, as well as for patients. Now that HIV providers are opening their doors again, some of the changes occasioned by the pandemic have become part of the “new normal.” In fact, some providers believe these changes will have long-term benefits for patients. Open Door Health, a new clinic providing primary and sexual health care to the LGBTQ community in Rhode Island, opened its doors on March 2—just one day after the first confirmed case of COVID-19 was announced in Rhode Island. “During the early months of the pandemic, our HIV primary care services shifted almost exclusively to telemedicine, with services requiring in-person care, such as phlebotomy, either deferred when safe to do so or coordinated with a collaborating site,” said Matthew Murphy, M.D., medical director of the clinic, responding to questions via email.
After Rhode Island’s epidemic peaked and declined in May, Murphy says, they recently reopened their in-person HIV and primary health care services, while keeping telemedicine appointments available. “We plan to continue to offer both comprehensive in-person and telemedicine services for our HIV primary care patients as a way to expand our accessibility to patients who frequently encounter barriers to medical care,” Murphy stated.