Facing a yearlong siege from the coronavirus, the defenses in another, older war are faltering.
For the last two decades, HIV/AIDS has been held at bay by potent antiviral drugs, aggressive testing and inventive public education campaigns. But the COVID-19 pandemic has caused profound disruptions in almost every aspect of that battle, grounding outreach teams, sharply curtailing testing and diverting critical staff away from laboratories and medical centers.
The exact impact of one pandemic on the other is still coming into focus, but preliminary evidence is disturbing experts who have celebrated the enormous strides in HIV treatment. While the shift in priorities is nationwide, delays in testing and treatment carry particularly grievous risks in Southern states, now the epicenter of the nation’s HIV crisis.
“This is a major derailing,” said Dr. Carlos del Rio, a professor of medicine at Emory University in Atlanta and head of the Emory AIDS International Training and Research Program. “There will be damage. The question is, how much?”
One large commercial lab reported nearly 700,000 fewer HIV screening tests across the country — a 45% drop — and 5,000 fewer diagnoses between March and September 2020.
Clinics have limited in-person visits and halted routine HIV screening in doctors’ offices and emergency rooms, with physicians relying instead on video calls with patients, a futile alternative for those who are homeless or fear family members will discover their status. Rapid-testing vans that once parked outside nightclubs and bars and handed out condoms are mothballed. And, in state capitals and county seats, government expertise has been singly focused on the all-hands-on-deck COVID response.
Concrete signs of the impact on HIV surveillance abound: One large commercial lab reported nearly 700,000 fewer HIV screening tests across the country — a 45% drop — and 5,000 fewer diagnoses between March and September 2020, compared with the same period the year before. Prescriptions of PrEP, a preexposure prophylaxis that can prevent HIV infection, have also fallen sharply, according to new research presented at a conference last month. State public health departments have recorded similarly steep declines in testing.
That dearth in new data has led to a precarious, unknowable moment: For the first time in decades, the nation’s lauded HIV surveillance system is blind to the virus’s movement.
Nowhere will the lack of data be felt more profoundly than in the South: The region accounts for 51% of all new infections, eight of the 10 states with the highest rates of new diagnoses, and half of all HIV-related deaths, according to the most recent data available from the Centers for Disease Control and Prevention.
Even before the COVID pandemic, Georgia had the highest rate of new HIV diagnoses of any state, though lower than that of Washington, D.C. The Georgia Department of Public Health recorded a 70% drop in testing last spring compared with spring 2019.
The slowdown in HIV patient services “could be felt for years,” said Dr. Melanie Thompson, principal investigator of the AIDS Research Consortium of Atlanta.
She added, “Every new HIV infection perpetuates the epidemic and will likely be passed to one or more people in the months to come if people are not diagnosed and offered HIV treatment.”
Coronavirus testing has commandeered the machines previously used for HIV/AIDS testing, further straining surveillance efforts. The polymerase chain reaction — or PCR — machines used to detect and measure the genetic material in the human immunodeficiency virus are the same machines that run COVID tests around-the-clock.
Over the decades, as HIV migrated inland from coastal cities like San Francisco, Los Angeles and New York, it took root in the South, where poverty is endemic, lack of health coverage is commonplace, and HIV stigma is pervasive.
“There is the stigma that’s real. There is legacy racism,” said Dr. Thomas Giordano, medical director of Thomas Street Health Center in Houston, one of the largest HIV clinics in the U.S. The state’s political leaders, he said, view HIV as “a disease of the poor, of Blacks, Latinos and gay. It’s just not mainstream at the state level.”
Black people represent 13% of the U.S. population but about 40% of HIV cases — and deaths.
HIV clinics that serve low-income patients also face limitations using video and phone appointments. Clinic directors say poor patients often lack data plans and many homeless patients simply don’t have phones. They also must contend with fear. “If a friend gave you a room to sleep and your friend finds out you have HIV, you might lose that place to sleep,” said del Rio of Emory University.
Texting can be tricky, too. “We have to be cautious about text messages,” said Dr. John Carlo, chief executive officer of PRISM Health Care North Texas in Dallas. “If someone sees their phone, it can be devastating.”
In Mississippi, HIV contact tracing — which was used as a model for some local efforts to track the coronavirus — has been limited by COVID-related travel restrictions meant “to protect both staff and client,” said Melverta Bender, director of the STD/HIV office at the Mississippi State Department of Health.
Of all regions in the U.S., the South has the weakest health safety nets. And Southern states have far fewer resources than states like California and New York. “Our public health infrastructures have been chronically underfunded and undermined over the decades,” said Thompson, the Atlanta researcher. “So we stand to do worse by many metrics.”
Georgia’s high HIV infection rate and the state’s slow pace of COVID vaccinations “are not unrelated,” Thompson said.
The porous safety net extends to health insurance, a vital need for those living with HIV. Nearly half of Americans without health coverage live in the South, where many states have not expanded Medicaid under the Affordable Care Act. That leaves many people with HIV to rely on the federal Ryan White HIV/AIDS Program and state-run AIDS drug assistance programs, known as ADAPs, which offer limited coverage.
“As a matter of equity, insurance is critical for people to live and thrive with HIV,” said Tim Horn, director of health care access at NASTAD, the National Alliance of State and Territorial AIDS Directors. Ryan White and ADAPs “are not equipped to provide that full sweep of comprehensive care,” he said.
Of all regions in the U.S., the South has the weakest health safety nets. And Southern states have far fewer resources than states like California and New York.
Roshan McDaniel, South Carolina’s ADAP program manager, says 60% of South Carolinians enrolled in ADAP would qualify if her state expanded Medicaid. “The first few years, we thought about it,” said McDaniel. “We don’t even think about it nowadays.”
Enrollment in the Ryan White program jumped during the early months of the pandemic when state economies froze and Americans hunkered down amid a grinding pandemic. Data from state health departments reflect the increased need. In Texas, enrollment in the state’s AIDS drug program increased 34% from March to December 2020. In Georgia, enrollment jumped by 10%.
State health officials attribute the increased enrollment to pandemic-related job losses, especially in states that didn’t expand Medicaid. Antiretroviral treatment, the established regimen that suppresses the amount of virus in the body and prevents AIDS, costs up to $36,000 a year, and medication interruptions can lead to viral mutations and drug resistance. But qualifying for state assistance is difficult: Approval can take up to two months, and missing paperwork can lead to canceled coverage.
Federal health experts say Southern states have generally lagged behind getting patients into medical care and suppressing their viral loads, and people with HIV infections tend to go undiagnosed longer there than in other regions. In Georgia, for example, nearly 1 out of 4 people who learned they were infected developed AIDS within a year, indicating their infections had long gone undiagnosed.
As vaccinations become widely available and restrictions ease, HIV clinic directors are scouring their patient lists to determine who they need to see first. “We are looking at how many people haven’t seen us in over a year. We think it’s over several hundred. Did they move? Did they move providers?” said Carlo, the doctor and health care CEO in Dallas. “We don’t know what the long-term consequences are going to be.”
In North Carolina, the nation’s leading tobacco producer, any adult who has smoked more than 100 cigarettes in their lifetime can now be vaccinated against covid.
In Florida, people under 50 with underlying health conditions can get vaccinated only if they have written permission from their doctor.
In Mississippi, more than 30,000 covid vaccine appointments were open Friday — days after the state became the first in the contiguous United States to make the shots available to all adults.
In California — along with about 30 other states — people are eligible only if they are 65 or older or have certain health conditions or work in high-risk jobs.
How does any of this make sense?
“There is no logical rationale for the system we have,” said Graham Allison, a professor of government at Harvard University. “We have a crazy quilt system.”
Jody Gan, a professional lecturer in the health studies department at American University in Washington, D.C., said the lack of a national eligibility system reflects how each state also makes its own rules on public health. “This hasn’t been a great system for keeping, you know, the virus contained,” she said.
The federal government bought hundreds of millions of doses of covid vaccines from Pfizer, Moderna and Johnson & Johnson — as well as other vaccines still being tested — but it left distribution largely up to the states. Some states let local communities decide when to move to wider phases of eligibility.
When the first vaccines were cleared for emergency use in December, nearly all states followed guidance from the federal government’s Centers for Disease Control and Prevention and restricted use to front-line health workers and nursing home staffs and residents.
But since then states have gone their own way. Some states have prioritized people age 75 and older, while others have also allowed people who held certain jobs that put them at risk of being infected or had health conditions that put them at risk to be included with seniors for eligibility. Even then, categories of jobs and medical conditions have varied across the country.
As the supply of vaccines ramped up over the past month, states expanded eligibility criteria. President Joe Biden promised that by May 1 all adults will be eligible for vaccines and at least a dozen states say they will beat that date or, as in the case of Mississippi and Alaska, already have.
But the different rules among states — and sometimes varying rules even within states — created a mishmash. This has unleashed “vaccine jealousy” as people see friends and family in other states qualify ahead of them even if they are the same age or have the same occupation. And it has raised concerns that decisions on who is eligible are being made based on politics rather than public health.
The hodgepodge mirrors states’ response overall to the pandemic, including wide disparities on mask mandates and restrictions for indoor gatherings.
“It’s caused a lot of confusion, and the last thing we want is confusion,” said Harald Schmidt, an assistant professor of medical ethics and health policy at the University of Pennsylvania.
As a result, some Americans frantically search online every day for an open vaccine appointment, while vaccines in other states go wanting.
The assorted policies have also prompted thousands of people to drive across state lines — sometimes multiple state lines — for an open vaccine appointment. Some states have set up residency requirements, although enforcement has been uneven and those seeking vaccines are often on the honor system.
Todd Jones, an assistant professor of economics at Mississippi State University near Starkville, said the confusion signals a need for a change in how the government handles the vaccine. “The Biden administration should definitely be thinking about how it might want to change state allocations based on demand,” Jones said. “If it does become clear that some states are actually not using lots of their doses, then I think it would make sense to take some appointments from these states to give to other states that have higher demand.”
Jagdish Khubchandani, a professor of public health at New Mexico State University, said no one should be surprised to see 50 different eligibility systems because states opposed a uniform federal eligibility system.
“Many governors don’t want to be seen as someone who listens to the federal government or the CDC for guidance,” he said. Florida Gov. Ron DeSantis, a Republican, has boasted of ignoring the CDC advice when he opted to make anyone 65 and older eligible beginning in December.
“There is a lot of political posturing in deciding eligibility,” Khubchandani said.
To be sure, governors also wanted the flexibility to respond to particular needs in their states, such as rushing vaccines to agricultural workers or those in large food-manufacturing plants.
Jones said the decision to open vaccines to all adults in the state may sound good, but Mississippi has one of the nation’s lowest vaccination rates. Part of that is attributed to hesitancy among some minority communities and conservatives. “It’s good news everybody can get it, but there doesn’t seem to be a whole lot of demand for it.”
Jones, 34, was able to go online for a shot on Tuesday and was vaccinated at a large church a short drive from his home on Thursday morning. “I was very happy,” he said.
Published courtesy ofKHN (Kaiser Health News), a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.
Nursing students, nursing schools, school nurses grounded after school closures, and retired nurses are all joining the fight against the rising pandemic.
Here are just a few
examples to be found across the United States:
Jackson, Mississippi
Seniors at
Belhaven’s School of Nursing are performing community outreach and
educating the public on how to protect themselves and others from the
virus. Students are teaching infection-control techniques, discussed
sanitation practices with the college’s operations team, and have
posted instructions in campus dorms on maintaining safe hygiene.
Senior Rebecca Rylander tells Jackson’s WJTV,
“There is a desperate need for healthcare workers amidst this
pandemic, and I want to help fill that need.”
Long Island, New
York
At nursing and
medical programs in Long Island, students barred from immediate
contact with patients are playing an active role behind the scenes
and on the front lines. While medical students at the Renaissance
School of Medicine in Stonybrook are conducting online research and
serving patients via telehealth sessions, the Barbara H. Hagan School
of Nursing and Health Sciences tells Newsday
that they have “alumni, graduate students and faculty working in
emergency rooms and testing sites, and undergraduates are working or
volunteering as nursing assistants.”
Darien, Connecticut
School nurses have
volunteered at Darien High School’s COVID-19 testing station. Lisa
Grant, a school district nurse at Hindley School, said “We had been
asking our director what we can do to help so when Darien signed up
for a site, we volunteered.” Yvonne Dempsey, of Ox Ridge School was
also ready to help out. Dempsey told the Darien
Times, “As nurses, we put ourselves out there any way we can. I
figured that’s something I can do in my free time with the schools
closed.” She adds, “Testing is the key — testing and isolation
as much as possible is the only way to stop the spread.”
Framingham,
Massachusetts, Caldwell, New Jersey, and elsewhere
In response to calls
from the American Association of Colleges of Nursing, nursing faculty
at colleges, universities, and community colleges are rushing to
donate supplies of everything from masks to isolation gowns, to hand
sanitizer. “This is a time when we all need to come together as a
community and work cooperatively to fight this pandemic for the
health and safety of everyone,” MassBay Community College President
David Podell told the Framingham
Source. Jennifer Rhodes, DNP, a faculty member at Caldwell
University’s School of Nursing and Public Health, remarked,
“As a former emergency room nurse, I cannot imagine what they are
experiencing on the front lines right now.”
Chapman, Nebraska
Retired nurses are
also answering individual states’ call for help. Nebraska
TV spoke to 61-year-old Mary Steiner, a former emergency response
nurse, has volunteered for the Central Nebraska Reserve Core. As she
waits to put to use her training in natural disaster and emergency
preparedness, Mary remarks, “If it’s something that becomes as
serious as what’s going on in New York City right now… They’re
wanting all hands on deck and so regardless of what my workplace
setting has been in the past I know they’re going to be able to use
me.”
