Lessons From the HIV Epidemic for the COVID-19 Pandemic

Heather Boerner

April 08, 2020

Editor's note: Find the latest COVID-19 news and guidance in Medscape's Coronavirus Resource Center.

From a mostly quiet hospital, Karen Joynt-Maddox, MD, from Washington University School of Medicine in St. Louis, is watching COVID-19 cases spread from Boston to New York City to nearby Illinois with grim certainty.

"There's no reason to think that we will be any different from any other area," she said. "We are just watching it and preparing and hoping that the extra lag time will give us a little more time to prepare in terms of supplies and capacity."

They're as prepared as they can be as a hospital system, she said. The head of her system has regular pandemic preparedness calls with the other two local systems that make up the majority of care in St. Louis and surrounding Illinois. That's comforting to Joynt-Maddox.

But she knows a larger problem is looming.

She sees it in the face of the recent patient with full time employment who came to the emergency department with a heart attack and left alive but likely bankrupted by the procedures she'd done. He was one of the 11.5% of Missourians without any kind of health insurance.

She thinks about the patients who leave the hospital who won't follow up on their heart failure treatment or get that CPAP machine because it's just out of their financial reach. She thinks of low-income residents of urban St. Louis who also work: the Uber drivers, or GrubHub delivery people, even the hairdressers. And she thinks of the members of the homeless and injection drug using communities in the city who leave the emergency department to "no care at all."

She and her colleagues spend a lot of time looking at Walmart's $4 prescription list, and they just plain don't prescribe some medicines because they know their patients can't afford it.

And then she adds to her worries what COVID-19 could do to her community.

Sick at the Intersection of the Stroke Belt and Diabetes Belt

"What are we going to do?" Joynt-Maddox asks. "They are sicker already. The healthcare and wealth disparities are already greater."

This is what it's like to prepare to treat COVID-19 at the intersection of the stroke belt, the diabetes belt, and another still-lingering epidemic: HIV.

Unlike COVID-19, HIV has multiple effective treatments that can help people with HIV live nearly as long as their friends without HIV. But that epidemic persists in places like Missouri, Alabama, Kentucky, Mississippi, Arkansas, South Carolina and Oklahoma, leading the federal government to identify those states and 48 counties for additional resources as part of the federal Ending the HIV Epidemic plan.

These are the areas in the United States where half of all new HIV diagnoses happened in 2018.

The Ending the HIV Epidemic plan seeks to use science and community engagement to reduce new HIV transmissions by 90% by 2030. But researchers have found that the reasons effective treatment hasn't curtailed the HIV epidemic in these areas may also stymie the COVID response: It's not just treatment and personal protective equipment, said Jeff Crowley, program director of infectious disease initiatives at Georgetown University's O'Neill Institute for National and Global Health Law.

"We know, even though we're at the beginning of COVID, that the groups that will be impacted the most harshly will be the populations that are marginalized already," said Crowley, who is also former AIDS czar in the White House from 2009 to 2011. "So how are we proactively thinking about models of care that will work for people?"

HIV research shows that increases in health insurance disparities, like those Joynt-Maddox sees in her patients, along with structural barriers outside the clinic are associated with the persistence of the epidemic. Now they're urging COVID-19 healthcare providers and policy makers: Addressing these disparities in the middle of an epidemic is key to ending an outbreak.

Epicenters of HIV: New York City , San Francisco

Back in the 1980s, HIV was also a virus that moved from the coasts to the prairies. Back then, its epicenters were New York City and San Francisco, and some people took comfort in the idea that they weren't in big cities, and they weren't gay, so it couldn't hurt them.

That was and continues to be a deadly mistake, said Sharon Hillier, PhD, an HIV microbiologist who chaired this year's Conference on Retroviruses and Opportunistic Infections (CROI) 2020.

"That's stigma, trying to give it names that make it look like it can't happen to you when we know it can," she said, comparing the stereotype of HIV as a "gay disease" to COVID, which some have called the Chinese or Wuhan virus, after the city and country where it originated.

"As long as people think it's 'those people' or the other, they don't understand that viruses don't care who you are or where you live," she said.

And that means they don't get tested and don't get treatment when they need it. Multiple studies show that people who aren't white gay men on coasts just don't perceive their own risk for HIV.

Indeed, today HIV is much less urban and coastal, and far less white. Recent data from the Centers for Disease Control and Prevention (CDC) show that black Americans, who account for 13% of the US population, make up about 43% of Americans living with HIV, and 44% of new diagnoses. Latinos are the group second most likely to be at high risk for HIV.

HIV Experts on COVID-19: Disparities Drive Epidemics

These are the people who are least likely to take HIV prevention pills, despite having the greatest need. When asked why they didn't want to take them, some cite cost and others mention concern about side effects. Many told researchers they just didn't think they were at risk.

But it's more than that, HIV experts told Medscape Medical News over and over again. When new treatments and prevention methods have become available for HIV, they have been slow to move outside well-heeled urban areas.

"The populations who are most in need were the last to get" antiretroviral treatment and pre-exposure prophylaxis, said Gregorio Millett, PhD, an HIV epidemiologist and now vice president and head of policy at the American Foundation for AIDS Research (amfAR).

But there are also disparities unrelated to the specific work of HIV management and diagnosis. Studies have shown that what keeps people from getting diagnosed and treated are a lack of access to stable housing, financial instability — making it difficult to take time off work for doctors appointments, pay for medications, and even to have food to eat — and previous negative experiences and distrust of the healthcare system.

"I really have been struck by the parallels around these issues with housing and food security and financial stability and stigma, whether it's with HIV or coronavirus," said David Holtgrave, PhD, a former member of the President's Advisory Council on HIV/AIDS (PACHA) and current dean of the school of public health at State University of New York at Albany.

"When we say to people, 'You should quarantine at home,' it assumes that you have a home," he said. "We think of people stocking up on supplies and groceries for a couple weeks or more — that implies that you have the financial resources to do that. And when we also state that people should stay at home if you're ill, it assumes that you have paid sick leave or can somehow afford to miss work without pay. When we say you don't go to school, it assumes you have somewhere else to go and that you have another source of nutrition besides the breakfast and lunch you might be getting at school."

Take a map of the United States and overlay it with the CDC's map of the stroke belt and add the diabetes belt. Now add the communities and states identified for additional funding and support under the president's Ending the HIV Epidemic plan.

What becomes evident, especially in the plan's seven rural states, are crimson markings stretching from Texas and Oklahoma, through Missouri, across Kentucky, Arkansas, Louisiana, Alabama, Mississippi and in to Florida.

And the communities involved in the Ending the HIV Epidemic plan also map onto another topography: Disproportionately high unemployment rates, even before the COVID crisis led to mass layoffs, and high levels of poverty.

In cities like East Baton Rouge, Louisiana, 5.1% of the overall population was unemployed in January 2020, according to Bureau of Labor Statistics data. Or, consider Philadelphia, with a baseline unemployment rate of 6%. The data are not differentiated by ZIP code, so it's unclear what the unemployment rates are in poorer communities.

But a recent report from amfAR and the Kaiser Family Foundation found that it wasn't just underlying community health that has changed the HIV prognosis for communities across the U.S. It was structural access to healthcare that changed the outcomes for people living with HIV the most.

So add to that map the baseline percentage of the population that's uninsured: 14.8% in Mississippi and 16.6% in Oklahoma. Now add in Texas: 23.1% in Dallas, 22% in Harris County, 18% in Tarrant County.

Then consider the impact of the Affordable Care Act. In states that chose to expand Medicaid, HIV testing increased, rates of new HIV diagnoses overall dropped. And viral loads — that is, the amount of HIV detectable in a person's system, a marker of whether patients are receiving HIV treatment — dropped to undetectable levels. That was true for people living with HIV who received insurance through the health insurance marketplaces, too.

But many of the communities in the Ending the HIV Epidemic plan are in states — or are states — that didn't expand Medicaid. In addition, 40 hospitals have closed in the seven rural states of the Ending the HIV Epidemic plan, costing 332 beds in Oklahoma, 302 in Missouri, 208 in South Carolina and 180 in Alabama since 2005, according to University of North Carolina's Cecil G. Sheps Center for Health Services Research.

Other data show that nearly half of all people in Alabama live in areas without adequate access to a primary care provider, and more than half do in Mississippi. One in five don't have access in Arkansas and 2.7 out of 10 Missourians don't have sufficient medical care in their communities.

In these areas, states' public health departments can't help as much as they might want to, either. State-level data show that areas in these same health disparity belts — stroke, diabetes, HIV — tend to spend far less on public health per person than those that expanded Medicaid, for instance. While places like New York state spend $84 per person on public health — and this doesn't include city health funding — Missouri, for instance, spends only $7.

It's not that public health workers in Missouri are less dedicated to solving health crises. But Missouri is just a "lower tax state," said Joynt-Maddox, who is also codirector of Washington University's Center for Health Economics and Policy.

And that means that the money to fill those gaps left by the market just aren't there.

"It's not like the state has a bunch of money they are just refusing to spend," said Joynt-Maddox.

No Stay-At-Home Orders

Now add in emerging data on disparities in COVID response.

None of the rural states targeted by Ending the HIV Epidemic had issued stay-at-home orders as of March 22, although some local communities within those states have, data from the COVID Tracking Project show.

Rates of continued travel in the country have been highest among residents of those states, data from Cuebiq demonstrate.

And when it comes to testing for COVID, the rural states in the Ending the HIV Epidemic plan had all tested fewer than three people per 10,000 residents by April 2.

A recent data brief from the Lerner Center for Public Health Promotion at Syracuse University in New York showed that states with higher populations of black Americans and higher rates of poverty are also testing for COVID less frequently.

"By all accounts, the availability of tests for COVID-19 has been abysmal nationwide, but especially so in rural areas," states another Lerner Center brief.

When there's new technology — say a new HIV treatment or the advent of HIV pre-exposure prophylaxis — it goes to the people who are already well engaged in care, who already have a good relationship with their clinicians, and influence to persuade policy makers to make their needs a priority.

That was true for HIV, said Millett. When PrEP and HIV treatment have been slow to get to the communities in the South and Midwest and urban areas where it's most needed. And it appears to be true for COVID, too. He pointed to celebrities and athletes receiving COVID testing before the general public had access.

By all accounts, the availability of tests for COVID-19 has been abysmal nationwide, but especially so in rural areas.

"Whenever you have a new technology, the populations that need it the most are always the least likely to get it," said Millett, formerly a senior policy advisor to the White House Office of AIDS Strategy.

But even beyond that, the HIV epidemic has highlighted the gaps in the overall healthcare systems that have been integral to discussions about ending the HIV epidemic. And there's one other map that Millett said needs to be added to this vigilant geography: The map of where black Americans live.

The map of illnesses for white Americans is a diffuse picture of disease because white communities are everywhere, he said. But black Americans disproportionately live in concentrated areas, particularly the South and in urban areas that are part of the Ending the HIV Epidemic plan.

"For blacks, it doesn't matter what it is — unemployment, HIV, heart disease deaths or anything else — it's concentrated in the exact same area," said Millett.

So as he looks ahead to COVID response, he said it's too soon to know whether Ending the HIV Epidemic areas will have worse outcomes in COVID — only time will tell that. But "the number of deaths are probably going to be higher in exactly the same areas" for black and white Americans, he said.

Recent data from Kaiser Family Foundation is already baring this out. In the District of Columbia, another Ending the HIV Epidemic plan jurisdiction, black Americans make up 29% of diagnosed cases of COVID-19, but 59% of the deaths from the disease. In Michigan — Detroit is an Ending the HIV Epidemic plan area — black Americans account for 14% of the state population, 33% of confirmed COVID-19 cases, but 41% of deaths as of April 6.

And although some Ending the HIV Epidemic communities, like New York City, New Orleans, San Francisco, Detroit, and Boston, have confirmed COVID outbreaks, other cities within the plan have growing epidemics too — Memphis, Tennessee; Atlanta; Dallas and Fort Worth, Texas; Miami; Riverside and San Bernardino counties in California; and San Juan, Puerto Rico — according to a new modeling study. Epidemics are also emerging in many rural areas of the Ending the HIV Epidemic plan, despite sparse testing. areas of Oklahoma, Kentucky, and South Carolina are emerging epidemic areas.

And with 380 cases in St. Louis as of April 7, Missouri isn't protected, either.

This concerns Kneeshe Parkinson, a lifelong St. Louis resident, who is known as a mama bear to her whole family.

"I don't want it to arrive," she said of COVID-19. "Not in my household."

Parkinson is of course concerned about herself. But she figures she's at less risk than some others in her family. After all, she has HIV, but it's well controlled, with an undetectable viral load. Aside from a high body mass index and some allergies, she's pretty healthy. But the same can't be said for her parents. Her father had several strokes, after retiring from a St. Louis manufacturer of medical equipment, including the ventilators that have become central to the COVID response.

Her mother had a series of overlapping hospital stays due to severe diabetes that forced her to retire from her job, and now she lives in an affordable housing complex for seniors in the city, the only place she can afford to live on her Social Security disability insurance.

Her 17-year-old daughter, a server at a local restaurant, can't afford to stop working, even though every shift brings her closer to someone with COVID-19.

"She makes maybe $50 a day," she said. "Is it really worth her risking her life every day?"

But she also thinks about cost. Her father was able to keep his house but had to shed all his other assets so he could qualify for Medicare and Medicaid. Her daughter has health insurance through Medicaid, which Parkinson pays $65 out of her own pocket.

There have been tight months when Parkinson has had to make tough decisions about which bill to pay. But the premium bill always comes first "because nobody's going to help me with that," she told Medscape Medical News.

Time to Act

The spread of COVID-19 can be curbed by a speedy public health response, the healthcare system, a sufficient number of clinicians, and adequate personal protective equipment, said Millett. But "there's so much that's really variable right now."

Parkinson's experience with HIV could provide a potential path forward during the COVID crisis, though.

A federal program called the AIDS Drug Assistance Program offsets costs and means that Parkinson can afford to stay on her HIV medicines. Because of her access to clinics in St. Louis, she has regular care. And, when she needs it, she gets additional help from the federal Ryan White Cares Act, which provides wrap-around social services to help people living with HIV stay housed, fed, and able to focus on their health.

Of the people treated at Ryan White clinics across the country, 87.1% have suppressed viral loads, data show.

A parallel program modeled after Ryan White could help address disparities in communities like hers, said Parkinson.

There is evidence that policy makers are willing to respond to outbreaks in a science-based way. Although many states had not declared stay-at-home directives by March 22, by April 6, many had, including Florida, Georgia, Mississippi, and Tennessee. Two Ending the HIV Epidemic states, however — Oklahoma and Arkansas — continue to not have state-wide orders.

You'd rather be uncomfortable than dead.

The COVID-19 pandemic is very much like the HIV outbreak in Scott County, Indiana, from 2011 to 2014, said Steffanie Strathdee, PhD, from the University of California, San Diego, who has spent the past 20 years studying HIV outbreaks in people who inject drugs.

Despite deeply held moral objections, then-Gov. Mike Pence signed on to support a syringe-services program in the state, after being presented with data from public health officials.

Crowley said he remembers this, too. Jerome Adams, MD, the current surgeon general, was at the time a health commissioner in Indiana and initially resisted — on moral grounds — the idea of offering clean injection equipment to people who injected drugs.

"To his credit, when he started engaging with the CDC and really looked deeply at the data, he changed his mind," Crowley told Medscape Medical News.

Strathdee said she also thinks of Senate Majority Leader Mitch McConnell, who in 2016 spearheaded a move to lift the federal ban on funding syringe-access programs in response to the outbreak in Indiana.

The policy changes worked. Once implemented, the syringe-services program helped end the Scott County HIV outbreak, and they continue to be key, according to research, to stopping HIV outbreaks in other areas with opioid crises.

The same can happen with COVID-19, if clinicians and policy makers are willing to learn the lessons of HIV, Strathdee said.

"A proactive, aggressive implementation of public health can blunt or flatten the curve," but that requires policy makers to do things that might make them uncomfortable, Strathdee told Medscape Medical News.

But, she said, "you'd rather be uncomfortable than dead."

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