In a normal year, CrescentCare — a regional hub for sexual and reproductive healthcare — would administer nearly 12,000 rapid HIV tests. Staff would fan out to clubs on Frenchmen Street, to local churches and college campuses, and to Pride, offering a free test that delivers a result within about half an hour using just a finger prick of blood.
Of course, this is not a normal year, and across the state, the COVID-19 pandemic has impacted the effort to detect and treat HIV. So far this year, CrescentCare’s testing rate is only a bit more than 10 percent of its former annual average. With the drop in overall tests, said Joseph Olsen, CrescentCare’s director of testing, fewer people are testing positive and being connected to treatment.
“We’ve linked 34 to 40 people to care during coronavirus,” said Joseph Olsen, CrescentCare’s director of testing. “Previously, we would have been doing five to six times that [in the same period].”
Louisiana has been a hotspot for HIV for decades, and had the fourth highest HIV rate in the country in 2017. Just over half of all new cases in the state are diagnosed in Baton Rouge and New Orleans, and Black communities bear the brunt of those infections. But over the last decade, the state has made significant progress in containing the disease — progress that experts worry might be threatened by this latest pandemic.
“Likely, a side effect of the pandemic is going to be increased HIV infections,” said Olsen. “People are not getting tested, don’t know their status, and possibly had an exposure right before coronavirus.”
Testing is critical to reducing spread
In 2018, the state of Louisiana recorded 989 new HIV infections, 282 of which were in New Orleans. There are about 22,000 people living with HIV in the state. Both new and existing cases are disproportionately concentrated among Black people.
Since the mid-90s, HIV has been treatable if diagnosed. When prescribed a combination of antiviral drugs known as ART, HIV infections rarely progress to the deadly immune disorder AIDS. Consistent use of ART, taken as a pill, can also reduce the amount of virus in someone’s bloodstream to the point that it becomes undetectable to blood tests. At that point, it also becomes almost impossible for that person to transmit the virus.
That means that catching cases of the virus early, and getting patients into treatment, is critical to reducing its future spread.
The consequences of HIV are still serious, stressed Dorian-gray Alexander, a longtime local activist who is diagnosed with HIV. “People living with HIV, even well managed … we have higher rates of diabetes, higher rates of chronic heart disease, and we don’t know why.”
HIV stigma “is alive and well,” he said, and the social consequences of a diagnosis can be dire. “A lot of people living with HIV, what they have been told for the past 39 years is that they’re unclean, no one wants to be in a relationship with you, no one wants you in their life.”
Even before COVID-19 and the resulting stay-at-home orders and shutdowns of gathering places, he said, the diagnosis could be enormously isolating.
A little over ten years ago, said Sam Burgess, who directs the Louisiana Department of Health’s STD/HIV/Hepatitis program, only about 50,000 HIV tests were administered each year in the state.
In 2009, though, LDH began partnering with hospitals to make HIV screening a routine part of emergency room care. The Department of Corrections also began a testing program that year at state prisons. (In 2016, Human Rights Watch accused parish jails — many of which have contracts with the DOC to incarcerate state inmates — of withholding testing to avoid paying for HIV treatment. The same report described testing in facilities run directly by the state as “adequate.”)
Between those two state programs, Burgess said, the state’s annual testing doubled to about 110,000 tests a year.
Since 2014, the number of new diagnoses in the state has declined by about 20 percent. In 2010, the state had the fourth-highest rate of new HIV infections in the country. By 2015, it was eleventh.
Olsen partly credits that decline to a protocol released in 2017 that allowed community organizations, like CrescentCare, to connect people to HIV care immediately after their diagnoses.
“If you test positive downstairs,” Olsen said, “you’re going to start your antiretroviral medication today, and walk out with a 30-day prescription, regardless of ability to pay.”
Previously, he said, it would have taken weeks and several appointments to get a confirmed lab diagnosis and started on treatment.
Testing challenges
The pandemic has created some opportunities to test populations that otherwise would fall through the cracks, Olsen said.
“We were able to partner with four of the local hotels that turned into homeless shelters [during the pandemic]. That’s a population that generally is very hard to reach, based on access to cell phones and chargers. So we were able to have a place where this group of people had a big home base.”
Through that testing, CrescentCare identified three people with undiagnosed HIV, all of whom have now started on treatment.
And COVID-19 seems to have sent more people seeking testing for symptoms like fevers, which led to more HIV diagnoses. “For those first few months [of the pandemic],” Olsen said, “we actually saw super high rates of HIV positivity, but it was because people were coming to us who were symptomatic.”
However, Olsen says that the barriers to testing during the pandemic are systemic,like nervousness about visiting hospitals, and a lack of crowds to do mobile testing, and it’s hard to imagine a way around them. So far, the clinic has conducted just upwards of 1,500 tests this year, or a bit more than a tenth of their normal testing rate.
Now that the initial spike of people seeking testing has passed, CrescentCare is seeing a positivity rate of about two percent — almost exactly what they would see under normal circumstances.
That means that they’re not catching a lot of new cases, Olsen said. There’s no reason to think that overall case loads have declined significantly, but now the clinic is only diagnosing 20 percent the normal number of cases.
Instead of the rapid in-person tests that they would normally conduct, CrescentCare has pivoted to distributing take-home tests. Even before the pandemic, providers were concerned that gay bar closures would reduce their ability to test.
Walk up testing has continued at CescentCare’s location on Elysian Fields Avenue, right next to its COVID testing site. But now the clinic relies more on people to seek out testing, rather than going to them. At Pride, CrescentCare would not only set up tables for testing, but it would be in the parade with throws.
“For Pride, we were able to have an event at Oz, a gay bar on Bourbon Street,” said Olsen. “They were doing to-go cups and super limited seating. We were able to buy some Pride swag and go set up with some of those at home HIV test kits. So it was kind of sad in comparison to what Pride generally is. But we were able to have an event that let us give resources to the community.”
There are two downsides to take-home tests. The first is simply that they cost about five times as much as the tests CrescentCare would normally use. So far, CrescentCare has been able to shift its grant funding to cover those costs, but the dollars don’t go as far.
The second is that once CrescentCare has given out a test, “there isn’t any obligation for that person to report their result to us,” said Olsen. “We do give them paperwork that says if you test positive this is the number to call. We would also like you to call and report a negative result so we can close out this account. But they’re not beholden to that.”
So far, the response rate has been around 68 percent, out of 235 total take-home tests. Olsen said he hopes that number will rise as time goes on.
“We realize that a positive diagnosis might be overwhelming, and they might not want to reach out right away,” he said.
CrescentCare can still provide in-person testing at their clinic, but that’s not enough to make up for the lost ground.
‘Community outreach was paused’
Similar patterns are playing out across the state, though for different reasons. At the state level, testing is conducted largely through hospitals, prisons, and local public health offices, called Parish health units.
“Community outreach was paused,” Burgess said. “We look at our HIV and [sexually transmitted infection] surveillance data, and we see places where there is a high rate of diagnoses in a particular neighborhood. And then the teams would go out there and canvass the area, looking for natural hangouts, whether it be parks or nightclubs, businesses, or hair salons. So from mid-March until early June, there was very little happening in terms of outreach or testing in community settings.” That pause reduced the number of statewide tests by about 5,000, he said.
Routine testing in hospitals and prisons didn’t necessarily decline, he said, but Parish Health Units also experienced slowdowns.
“The services didn’t totally stop, but it became, you need to make an appointment and come in,” he said. “We’re starting to see things ramp back up,” he said, but “still not at the normal level of testing.”
His department has not yet conducted a final estimate for how much testing will decline this year, but he said he anticipates it to be around 20 percent.
Those drops in testing are likely to be concentrated even higher among populations that are already disproportionately impacted by HIV. The kind of outreach that’s been lost “primarily test[ed] gay, bisexual and transgender individuals, people who use injection drugs, commercial sex workers and African American men and women,” said Burgess.
“I would expect these same populations to see the greatest declines in testing due to COVID-19 but we have not conducted an analysis yet to see if the degree of decrease is greater than we would expect.”
Potentially lower risks for sexual transmission, but needle transmission could be up
A number of public health officials and advocates pointed out that there’s reason to believe that HIV transmission might be slowed during the pandemic, as lockdowns keep people at home and reduce the number of sexual partners they’re likely to have.
But other data from CrescentCare’s needle exchange complicates that picture. Nadia Eskildsen, who coordinates CrescentCare’s needle exchange, said that there’s been “a pretty significant increase in clients over the past six months since the pandemic started.”
Pre-pandemic, the syringe access program saw 200 to 250 people each Friday, but over the summer, had days where nearly 400 people showed up. Because of that, CrescentCare has begun to run two needle exchanges, one of which serves people from around the region
Providing clean needles is described by the CDC as a “best available strategy” for reducing the spread of HIV, partly because needle exchanges like that at CrescentCare create a space for intravenous drug users to connect to HIV testing and other healthcare.
But the rapid increase suggests that intravenous drug use is going up, which could be a warning for HIV rates, said Jason Halperin, the lead HIV clinician at CrescentCare. “For every one person who gets clean needles, one and a half don’t.”
A spike in intravenous drug use would match national data, which suggests that drug and alcohol use has risen across the board as people cope with the layered stresses of the pandemic.
But it won’t be clear what the impact of those competing trends — a potential reduction in sexual partners and a potential increase in drug use — will be for years.
“If you look at diagnoses in 2005,” said MarkAlain Dery, who runs an HIV clinic and a radio station called WHIV, “they went way down, and we always refer to that as the Katrina effect. In 2024, we’re going to look back at the data and say, that was the COVID effect.”
“Those impacts will likely be that we see people who are a little bit more advanced in their HIV pathway, or we may see more cases of AIDS diagnosed. So we may see that may lead to more transmission. But how much more it’s, it’s hard to say 100%.”
Alexander says that the same factors that are restricting testing may also make the experience of living with HIV more difficult, in ways that aren’t yet clear.
“I know that folks are really stressed out. I know that there is an increase in substance use. They’re all very anxious about COVID itself. You know, you know, what do I do? Do I have this cough? Do I go into a hospital? I don’t want to go see a doctor because I might expose myself.”