Why COVID-19 Is a Double Pandemic for People of Color Living with HIV

Because of healthcare inequities, people of color who are living with HIV have had to navigate additional challenges managing their health during the COVID-19 pandemic. Getty Images

Black and Latino communities have been disproportiona…

Because of healthcare inequities, people of color who are living with HIV have had to navigate additional challenges managing their health during the COVID-19 pandemic. Getty Images
  • Black and Latino communities have been disproportionately affected by the COVID-19 pandemic.
  • These disproportionate effects are not unlike the disparities present in the HIV epidemic for these same communities.
  • People of color who are living with HIV have had to navigate additional challenges managing their health during the COVID-19 pandemic.

We've known for months that the current pandemic has disproportionately affected Black and Latino communities nationwide.

Now new research has zeroed in further, examining how COVID-19 has affected the overall health and well-being of Black and Latino people who are living with HIV.

Published in the journal AIDS and Behavior, the new study looks at how COVID-19 interplays with HIV, from medication use to how it affected people's health in the early days of the pandemic.

The researchers assessed 96 people living with HIV who have low incomes, are Black or Latino, and have been living with HIV for an average of 17 years. They conducted in-depth interviews with 26 of these participants.

The researchers found that overall, the participants were “early adopters” of COVID-19-related public health recommendations, and their trust in local sources of information was higher than in federal government sources.

Experience with living with HIV as well as poverty helped them cope with and manage the pandemic.

This meant these people were equipped to “hustle” for needed resources like food and, in turn, share those resources with their communities.

On the flip side, this posed some risks. Needing to go out to seek these resources increased the risk of exposure to the coronavirus.

As with other medical appointments for the American public at large, HIV care visits for people in these populations were canceled due to concerns over the pandemic.

Many of these people also had poor access to forms of telehealth, something easier for more affluent people with access to the needed technology to use.

That being said, the researchers found that adherence to HIV antiretroviral therapy was “not seriously disrupted.”

Support group appointments and programs, like 12-step meetings, were attended virtually, but only for those who had the ability to access those services.

Most of these people did have internet or cellphone service made available to them through the “Obama Phone” program, which is the federal Lifeline free cell phone program.

But they still didn't have the technical skills or equipment to begin with to use telehealth meetings.

Crucially, the participants revealed how the pandemic dovetailed with our current reckoning over racial justice in the United States.

The researchers noted that participants made it clear that the structural racism in this country's systems and how it has disproportionately affected people of color during the pandemic is not unlike the disparities present in the HIV epidemic and how it affects these same communities.

“Many of the study findings surprised us, although looking back, they probably shouldn't have,” lead study author Marya Gwadz, PhD, associate dean for research and professor at the Silver School of Social Work at New York University, told Healthline.

Gwadz, who is also the director at Intervention Innovations Team Lab at the school, recalled the feeling of devastation as COVID-19 hit New York City at the start of the pandemic.

She mentioned the “sirens of ambulances going 24/7” and that “it's not an exaggeration to say it was a time of trauma, fear, and chaos across the city.”

Many of those sirens were heard ringing through communities of color that have predominantly low-income households.

Gwadz said as a point of reference, it was known that HIV care settings would be shifting to telehealth formats, and appointments were being canceled during that transition from the physical to the virtual.

There were disruptions in care, including support from community-based organizations and housing programs for people living with HIV. Stay-at-home orders affected needed visits to the local pharmacy.

“It's really hard to take HIV medication in the best of circumstances, and these were not the best of circumstances. Healthcare settings were talking about shifting to telehealth, but our participants don't typically have the types of phones or internet access to engage in telehealth,” Gwadz said.

“Most in this population experience food insecurity. We were concerned that we’d see serious disruptions to their HIV management and other aspects of their lives,” she said.

Gwadz said that while living in poverty particularly “complicated participants' experiences adapting to COVID-19,” they were actually “quicker to adapt to public health recommendations” overall than their peers who were not living with HIV.

Why?

“We found their experiences of COVID-19 were filtered through their experiences and knowledge gained living with HIV,” she explained.

These people were able to find ways to continue their HIV care — think home deliveries of medications, or connecting to their healthcare providers by using a friend's computer if they didn't have direct access to one of their own.

“Someone on the research team said, ‘It's not their first rodeo,' but because they did not have much of a financial buffer, they were often forced to violate stay-at-home orders to survive,” Gwadz said, citing the need to visit food pantries, for instance.

“This is one example of how poverty places people at elevated risk for COVID-19. They couldn't stay home and order Fresh Direct,” Gwadz asserted.

The idea of ‘resilience’ and the realities of systemic problems

Gwadz said that living with HIV can be hard to begin with, and living below the poverty line in the United States is “very hard.”

And dealing with both at the same time can mean wading through a multitude of cultural, societal, and economic roadblocks.

People living with HIV who are also living below the poverty line face several systemic barriers to health and well-being.

Not to mention the fact that being a person of color in this country makes access to needed resources even more difficult.

“In the HIV world, we have seen so much success and so many improvements in the medications. I think sometimes the successes make it challenging for many to connect with how hard it is to live with HIV,” Gwadz said.

“So, in this context, participants told us that they took COVID-19 seriously, and it did affect their lives. They were concerned, worried, anxious, and stressed,” she added.

Dr. Hyman Scott, MPH, the clinical research medical director at Bridge HIV and an assistant clinical professor of medicine at the University of California, San Francisco, told Healthline that COVID-19 “severed” a lot of “layers of support” for people living with HIV as well as poverty in this country.

“When you are talking about the most vulnerable people in our community, it has had a really devastating impact,” said Scott, who wasn't affiliated with the new research.

“Telemedicine has been relied upon, but the availability and use of that sort of technology is not the same in all of our communities, so we relied on something that was not reliable for many members of our communities. It caused further disruption,” he added.

For Scott, a major source of disruption for Black and Latino people living with HIV who come from lower-income households was the fact that the pandemic made in-person gatherings nearly impossible.

This can foster isolation from these communal support systems. This has been seen among members of the LGBTQIA+ community, many of whom also overlap with the greater HIV community.

Gwadz said that for those who had employment before the pandemic, the loss of income was a big blow.

Survey participants who had a loss of income “were unable to pay their bills and had more trouble keeping food on the table,” she said.

Among the COVID-19 domino effect that took place, school closures and an emphasis on virtual, at-home learning severely affected parents who were now under pressure to pay for expensive internet access that was now harder to maintain with less money coming in.

The “Obama Phone” program — while helpful in theory — was “typically not sufficient to meet participants' needs for telehealth or virtual access to school for their kids,” Gwadz explained.

That being said, the study sheds light on the idea of “resilience.”

Gwadz said that while the pandemic had “very serious effects” on this population of people living with HIV, they “were very resourceful and quick to adapt.”

Scott said that while “resilience exists” within these communities, “talking about resilience is a little bit of a double-edged response to tremendously negative things that are happening to people's lives.”

The stigma surrounding COVID-19 and HIV are huge, in addition to the hardships that exist as a result of structural, institutionalized racism in this country.

All these challenges have forced people to be “resilient” against incredibly difficult odds.

“I do think there is a lot of support for people living with HIV that have been instituted now and that has been helpful, but it doesn't negate a lot of the other elements that are really isolating, especially during COVID,” Scott said.

‘We are here for you’

Alicia Diggs has been an HIV advocate and activist for nearly 20 years, serving as the North Carolina state lead and member spokesperson for Positive Women’s Network – USA, a national group of women living with HIV and their allies.

She is also a visible member of the HIV community.

As an activist and advocate in this space, Diggs recalls one prevailing sentiment she's heard from other people of color living with HIV, particularly women: “fear.”

“I kept hearing ‘fear' because not very much was known about COVID as it pertains to people living with HIV, let alone having other comorbidities, so there was a lot of fear,” she said.

One common question Diggs kept hearing was whether HIV antiretroviral medications would make a person safer from the coronavirus, especially for people like Diggs, who is “undetectable” because of these antiretroviral medications.

“Undetectable” refers to the fact that people who adhere to HIV medications can attain an undetectable viral load. This means they won't be able to transmit HIV to any HIV-negative sexual partners, according to the Centers for Disease Control and Prevention (CDC).

Diggs said the Positive Women's Network lost some members to the pandemic in those early months, which generated even more fear and unease.

Additionally, she said the isolation of the pandemic particularly affected people with HIV who live in rural areas, who might not always have easy access to needed community resources.

The depression that can occur in some people living with HIV was compounded by added problems brought about by the pandemic itself.

Diggs said a lot of members of the greater HIV community were worried about the weight gain that medications can cause, as well as the stress, anxiety, and sedentary lifestyle brought about by the pandemic.

The winter was also especially hard for members of the HIV community, Diggs added.

The colder months made physically distanced outdoor visits with friends and loved ones harder, sometimes unbearable with freezing temperatures. This only worsened depression and isolation.

Diggs also echoes something others in the public health world have said: There are underlying parallels between the HIV crisis and the current COVID-19 pandemic.

In both instances, a public health crisis disproportionately affected — and often stigmatized — particularly vulnerable members of both American and global society.

During both crises, governmental and policy failings made things worse.

Diggs said that long-term HIV survivors she knows felt triggered by the COVID-19 pandemic. They felt the same sense of shame, stigma, isolation, and exclusion they experienced at the height of the HIV crisis.

On top of this, for members of Black and Latino communities, a bleak national past of racist, deadly institutionalized health policies — think of the Tuskegee experiments, for example — left many people of color, including those living with HIV, skeptical of the new COVID-19 vaccines.

“People are reliving this all over again — the stigma of HIV and the stigma of COVID — you're in a store and somebody coughs and you go ‘Ew, cover your mouth!' And I've done it, we've all done it,” Diggs added.

When it comes to many of the systemically racist failings of this country and whether COVID-19 colliding with the added spotlight on racial and social justice movements — particularly Black Lives Matter — will bring about change, Gwadz is cautious.

“Our society, which can be characterized as grounded in inequity, structural inequality, and policies that were created by white people and for white people, moves powerfully toward homeostasis,” she explained. “The BLM [Black Lives Matter] movement is seeking to disrupt and reform that system, but we're not there yet. But those in the movement won't stop. It's a lifelong fight for racial justice.”

She added that we're seeing racial and socioeconomic inequities exemplified in the rates of COVID-19 vaccination.

“There is a tendency for people to blame people of color for having ‘vaccine hesitancy.' My take is that the biggest problems to COVID vaccination are structural: Poor access to vaccines where they are needed most and other barriers to access, such as transportation,” Gwadz said. “But, secondarily, medical and public health institutions have not earned the trust of our BIPOC citizens.”

Scott said that in the face of all these challenges, it's important that people living with HIV — especially people of color — “reach out to their networks.”

That could be your social network of friends, familial networks, or local community organizations. There are many avenues of support, especially for those feeling isolated right now.

Reaching out for support

Diggs said that people of color living with HIV, as well as other people who are newly diagnosed with COVID-19 and might be feeling isolated from their communities, need to keep this in mind: “Help is out there.”

“Reach out to someone. It's very important [that] everybody knows ‘you are not by yourself,’” she said.

While connection and support can come from the community resources Scott mentioned, Diggs said it can come from strangers too.

If you see an advocate like Diggs with public social media profiles, don't be shy — send them a message.

“If that person is not able to support you in the way you need, trust and believe they can lead you to someone who can support you, and you do not suffer in silence,” Diggs said. “Don't believe you have to suffer. We are here for you.”