Matthew, 30, keeps an emergency stockpile of his life-saving HIV medication at his home in Sacramento, California. He started building his stash shortly after he was diagnosed six years ago, on the recommendation of people he met through a forum for those living with HIV. Without his once-a-day pill, his viral load would increase and his general health would decline.
Now, over a month after the World Health Organization declared the coronavirus a global pandemic, Matthew hasn’t broken into his stash. But, like many of the 1.1 million HIV-positive people in the United States, he has questions about how the ongoing crisis could affect his access to medication and his chances of contracting the coronavirus, and whether his chronic immune condition could put him at a higher risk of complications due to COVID-19, the disease caused by coronavirus.
“Being positive, it puts it at the forefront of your mind,” Matthew, who requested that his last name not be used to protect his medical privacy, told NBC News. “You have to be present and aware.”
CDC’s recommendations for HIV and COVID-19
There is currently “no specific information” about the risk of COVID-19 in those living with HIV, according to the Centers for Disease Control and Prevention. However, the CDC noted that HIV-positive people who are not receiving treatment (antiretroviral therapy) or still have a weakened immune system despite treatment are at greater risk of “getting very sick,” should they contract the coronavirus. According to a 2017 CDC report, approximately half of HIV-positive Americans do not have the virus under control and would fall into this higher-risk category.
To prevent sickness, the CDC recommends HIV-positive individuals avoid exposure to the virus by using everyday preventive measures like social distancing and frequent hand washing; maintain a healthy lifestyle by eating right, getting at least eight hours of sleep and reducing stress; and continue HIV treatment.
In addition to what’s recommended for all Americans amid the coronavirus pandemic, the CDC advises those with HIV to have at least a 30-day supply of HIV medicine and any other supplies needed for managing HIV; make sure vaccinations are up-to-date; establish a remote clinical care plan; and maintain a remote social network to stay mentally healthy.
Impact of age, comorbidities and poverty
Dr. Robbie Goldstein, an infectious disease specialist at Massachusetts General Hospital and director of its Transgender Health Program, said the coronavirus is most likely to affect the HIV-positive population through secondary conditions, such as homelessness, incarceration, old age and underlying health problems.
“What I say to my patients is, if you're taking your medications and your CD4 count is greater than 200, for right now, we believe that it is not your immune system that is going to increase your risk of acquiring COVID,” Goldstein said. “That said, many of my patients and many patients living with HIV have other issues that they're facing that put them at really high risk.”
One of those issues, according to Goldstein, is age. The CDC has warned that older adults “seem to be at higher risk for developing more serious complications from coronavirus,” with 8 out of 10 people reported dying from COVID-19 complications in the U.S. being 65 and older.
Individuals living with HIV are disproportionately older than the general U.S. population, according to the CDC: While approximately 35 percent of the U.S. population is over 50, nearly half of HIV-positive people are.
Beyond the physical health risks, older people living with HIV are also more likely to experience negative psychological effects as a result of the pandemic, according to Goldstein, who sees HIV-positive patients at his clinic twice a week.
“These are people who watched as all of their young friends died around them" during the AIDS crisis, he said, "and they are once again watching as young people around this country die."
“We also have to remember that these folks who are now in their 60s and 70s and in some cases in their 80s … are living a life with very few other people around them,” Goldstein said. “They don't have the same family structure that many other people in their 70s and 80s have. They don't have kids and friends and partners and parents who can help support them through this.”
People of any age who have “serious underlying medical conditions might be at higher risk for severe illness from COVID-19,” according to the CDC. In its guidance, the CDC specifically mentions chronic lung disease, asthma, serious heart conditions, diabetes, liver disease and severe obesity, among other conditions.
While HIV-positive people who start their medication soon after contracting the virus have about the same life expectancy as the general U.S. population, people with long-lasting infection are still more likely to experience additional health problems later in life, according to Stephen Helmke, a geriatric cardiology researcher at Columbia University who has been living with HIV for 34 years.
For example, HIV-positive people are at least 1.5 times more at risk for heart disease and stroke than the general population, according to the American Heart Association. Helmke said this is often a result of the chronic inflammation HIV causes, specifically for people who began their treatment with less effective drugs. Additionally, those living with HIV are more likely to suffer from liver damage, often because of their medication, and are more at risk for additional infections, like hepatitis and tuberculosis.
After recovering from a mild case of COVID-19, Helmke, 56, said he now has a deeper awareness of how dangerous the virus can be for those who have serious underlying conditions, including untreated HIV.
“There are deaths that are directly able to be tied to lung function, and then there’s folks whose lungs are still at the level of functionality, but their heart is not able to deal with the loss of optimal oxygenation,” Helmke said.
Dr. Revery Barnes, a physician specializing in HIV for Los Angeles County, said her main focus for her HIV patients, many of whom are homeless or in poverty, has been ensuring they have access to their medication, as well as food and housing.
While HIV drugs have remained in stock in the United States thus far, Barnes said she is navigating other barriers, like the skyrocketing unemployment rate, that might prevent her patients from accessing and taking their medicine.
“Poverty has been a huge pandemic going on for a long time,” Barnes said. “When you actually get down to the barriers to people taking their medications, so much of it has to do with the fact that they’re spending all of their time trying to find money, or trying to find housing.”
HIV also disproportionately affects incarcerated populations, which have infection rates three to five times higher than the general population, according to a 2013 report from the National Minority AIDS Council. According to the report, “as many as half” of all HIV-positive inmates released from correctional facilities each year have no home to return to.
Goldstein, the physician from Massachusetts, added that factors like homelessness and incarceration have an inherent physical risk when it comes to suppressing a contagious disease like COVID-19.
“The thing that is unique about all of those people … is the fact that they live in high density settings,” Goldstein said. “It’s really easy to social distance when you live alone in an apartment in New York City. It’s very hard to social distance when you live in a shelter in Boston.”
Surviving a pandemic
Two federal assistance programs for people living with HIV — the Ryan White HIV/AIDS Program and Housing Opportunities for Persons With AIDS — will see millions in additional funding from the $2 trillion stimulus package that was signed into law on March 27.
Jeremiah Johnson, the HIV project director for Treatment Action Group, an HIV/AIDS advocacy organization, called the funds, which total $155 million, “incredibly welcome,” but he said it is crucial for advocates to keep track of how that money is ultimately used and ensure that it’s enough to help those living with HIV weather this storm.
“I think it's incumbent on us to really start to sit down and do the math as a community,” he said. “We have a lot of landscaping to do in order to understand if this is even close to what we need to take care of these very vulnerable communities.”
Amid this latest public health crisis, Johnson also stressed the importance of keeping focused on the “ultimate end goal of trying to reign in HIV as an epidemic.”
Echoing the CDC’s guidance, Goldstein said it’s important for those living with HIV to establish a strong virtual support network to combat loneliness as they self-isolate during the mitigation phase of the pandemic. Barnes stressed the importance of keeping up with one’s health status — in terms of HIV and beyond.
“Because you know, somebody who's diabetic and doesn't know it is also immune compromised,” Barnes said.
Johnson, a longtime HIV activist who has lived with the virus for over a decade, said he sees a silver lining for people living with HIV and other chronic conditions, who are accustomed to navigating health care obstacles.
“I'm incredibly resilient, and I think that that applies to many people living with HIV,” he said. “We’re actually better prepared than a lot of people to deal with this current reality.”