Josefina Andrade felt her chest closing in as she walked up a flight of stairs to catch a ride home after work last month on the L. At times, she said it felt like her chest was tightening. In other moments, it felt like it was being pulled apart.
Her throat hurt. Congestion followed, along with coughing bouts that would last for minutes, and pain in her stomach. Andrade tested positive for COVID-19, and even though she was fully vaccinated and boosted, she was scared. Last year, a personal injury attorney she worked for fielded calls from clients who wanted private autopsies for their loved ones who had died of COVID-19.
Thoughts raced through her mind.
“Going into the hospital, they’re probably going to want to put me on a breathing machine,” said Andrade, 42, who has diabetes, a condition that increases her risk of getting really sick from the coronavirus.
She messaged her doctor, who called around to find a pharmacy that had a coveted treatment of pills called Paxlovid. During the surge of the Omicron variant, they were in short supply as waves of people got sick and hospitals were swamped. Andrade had never heard of Paxlovid, but she took it and recovered at home.
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Providers hope a group of drugs for outpatients, like the therapeutic help Andrade received, will be a game-changer in the fight against the virus. These are medications meant to prevent the most high-risk people from being hospitalized with the virus and dying from it, or from getting sick in the first place. This includes people who aren’t vaccinated, have received organ transplants or have other medical conditions that have made them defenseless against COVID-19 despite receiving vaccines and a booster.
But who is ultimately receiving therapeutics in Illinois and whether they’re reaching the most vulnerable patients is impossible to say or trace.
That’s because the Illinois Department of Public Health controls the supply of several of these medications but isn’t tracking whom providers and pharmacies dispense them to. That’s after two years of a pandemic where longstanding health disparities forced equity to the forefront.
Public health officials in Chicago in particular made equity a priority when COVID-19 vaccines arrived a little over a year ago and initially more shots went to white residents compared to other racial groups. That set off alarm bells in a segregated city where Black and Latino residents were disproportionately getting sick and dying of COVID-19.
But according to data the state does make public, it’s plain to see that access to the latest defense against COVID-19 — the group of drugs for outpatients — is unequal across Illinois. The state hasn’t shipped therapeutics to vast regions, raising questions about what is happening to patients across Illinois who could benefit the most from these drugs.
After WBEZ inquired about who is receiving therapeutics, the Illinois Department of Public Health asked pharmacies to track it.
“You really hit the nail on the head,” said Dr. Arti Barnes, the department’s chief medical officer. “That is a big concern.”
Barnes said the state has asked the federal government to require limited demographic information from all providers that prescribe and provide therapeutics. The U.S. Department of Health and Human Services allocates therapeutics to states, which then distribute them to hospitals, pharmacies and clinics.
And with Omicron fading, Barnes said there might be little appetite for the state to issue its own mandate to track therapeutics.
Cumbersome process
Beginning in December, as Omicron started to rage, the federal government granted the emergency use of several new therapies. The shift increased to getting drugs to people earlier to keep them out of the hospital — or prevent getting sick entirely — as the number of people infected and hospitalized shattered records.
Some of the drugs are pills, like Paxlovid, that patients can take at home.
The drug Sotrovimab, which patients receive through an IV infusion inside a hospital or clinic, had been around before Omicron hit, but became harder to get as other drugs became less effective against the variant.
Melanie Doretti, a physician assistant at Esperanza Health Centers who leads the therapeutics rollout there, said she’s worried patients may have fallen through the cracks because they didn’t speak up when they got sick and could have benefited from a COVID-19 therapeutic.
“I’ve really tried to work on that with my patients,” Doretti said. “They don’t really advocate for themselves. I feel like they’re used to hearing ‘no.’”
Esperanza treats mostly low-income and uninsured Latino and Black residents on the Southwest Side of Chicago, where COVID-19 has raged.
Here’s why Doretti and others are concerned. The path to getting treated is a maze for even the most experienced patient. People have to know these treatments even exist. Their doctors need to figure out if their patients qualify and then which drugs work best for them. Some patients can’t take pills because they interact with other medications they’re on and need an infusion instead.
And there’s a tight time frame to contend with. For Paxlovid, patients must test positive for COVID-19, have a doctor prescribe the treatment — if they have a doctor — and find a pharmacy that has the drug available. All of this must be done within five days.
Additionally, the most vulnerable patients may face physical and socioeconomic barriers to access, from how much time they have to spend hooked up to an IV and monitored afterward to how to get to a clinic in the first place. Some health systems with infusion centers aren’t taking referrals from out of their networks, leaving some patients who don’t have a connection in the lurch.
In Chicago, the health disparities are glaring on the South and West sides in particular, where it can be hard to access medical care.
There already were disparities in who was getting therapeutic treatments available before the Omicron surge. According to a study published in late January, a fraction of patients — just 4% — even got therapeutic treatments at 41 health systems across the U.S. from November 2020 to August 2021. Hispanic patients received treatment 58% less often than non-Hispanic patients, followed by Black, Asian and patients of other races, compared to white patients.
There are federal guidelines for who should get an outpatient therapeutic, but providers say it’s still on them to choose.
“Trying to prioritize which of our patients is more likely to have severe [COVID], none of us have a magic eight ball,” said Dr. Mustafa Alavi, a medical director at Erie Family Health Centers.
Where COVID-19 therapeutics are available
Underneath Rush University Medical Center, a large teaching hospital on the Near West Side, there are docks where trucks line up to drop off everything from medication to food to sheets for hospital beds.
This area, tucked away from public view, is where one of the coveted therapeutics, Sotrovimab, is dropped off, whisked away to the pharmacy and stored on a shelf in a secure fridge the size of a big walk-in closet.
“We don’t want to lose that, so we [give it] a little bit of special attention,” said Erin Shaughnessy, who runs Rush’s inpatient pharmacy.
Rush is a busy teaching hospital with a butterfly-shaped tower that was designed for catastrophic moments, like a pandemic. In Illinois, Rush has received some of the most therapeutics to treat outpatients in the entire state, according to a WBEZ analysis of the federal government’s COVID-19 Public Therapeutic Locator database.
The database is a shifting window into which providers have ordered and received one of three COVID-19 therapeutics across the nation: Evusheld, an injection that aims to prevent the most vulnerable people from getting COVID; and Paxlovid and Molnupiravir, which are pills high-risk patients can take once they get the virus to keep them out of the hospital.
While the database isn’t comprehensive, a one-month snapshot from January to February shows the Illinois Department of Public Health steered just over 50% of nearly 40,000 so-called courses of these therapeutics to giant retail pharmacies Walgreens and Walmart.
The rest were divided up in much smaller amounts to providers around the state, with large health systems like Rush that specialize in treating the most complex patients getting the biggest amounts. They treat a lot of people who would qualify and benefit from a therapeutic. And they have the space and resources to set up infusion centers, if that’s the treatment patients need.
But it’s another story in rural parts of Illinois, where hospitals are much smaller and with far fewer specialists than Chicago. Traveling long distances to get to a doctor is common.
In late January, Dr. Ben Brewer, a family physician in Gibson City in east central Illinois, lamented the lack of therapeutic treatment options for his patients. There were infusion treatments available but no pills to prescribe, and pills are easier for many people.
“Where’s the meds?” Brewer asked. “For us downstaters that typically vote for Republican candidates in our elections, are we on the short end of the stick?”
Separately, state public health officials have shipped Sotrovimab to providers around Illinois. These details aren’t in the federal database.
From Jan. 4 to Feb. 9, the top 10 providers receiving the most Sotrovimab were mostly downstate and in Chicago suburbs. They include a private physician group that had its vaccine supply cut off last year in Chicago for allegedly misallocating thousands of COVID-19 vaccines, according to data the state shared with WBEZ.
Where treatments are delivered isn’t necessarily where patients receive them. Some providers share their supply, a practice the state encourages.
Barnes at the Illinois Department of Public Health says the state is dependent on how many therapeutics it receives from the federal government. At one point, the state faced requests for more than 9,000 doses of Sotrovimab but had only about 2,000 doses to give, she said.
Providers also must sign up to request these treatments, and not every provider has, particularly in rural areas, Barnes said.
The health department uses an algorithm to decide where to allocate therapeutics. It takes into account which providers treat the sickest patients; social inequalities in various communities; and rates of COVID-19 cases, hospitalizations and vaccination. The state prioritizes high-risk groups, including long-term care facilities, and wants therapeutics available for patients within a 20-mile radius.
Barnes said other states are concerned they don’t have enough demographic information on patients receiving therapeutics. A spokesperson from the U.S. Department of Health and Human Services did not provide comment.
“Our equity lens has been on the back end. These are the areas that are the hotspots that we know it needs to go to, not necessarily on the front end of who is actually getting [treatments],” Barnes said.
She said the state has asked Walmart to offer therapeutics in more pharmacies. A Walgreens spokeswoman said the giant national pharmacy could not share demographic information about customers who receive therapeutics because Walgreens does not prescribe the medication.
Some physicians and pharmacists told WBEZ they’re tracking this information. But others are not. Many noted the federal government has data on these patients, even if it’s not public.
All of this makes it hard to know who is — and isn’t — benefiting from therapeutic treatments.
What’s more, there’s an untold number of patients who simply don’t know the treatments exist.
Kristen Schorsch covers public health and Cook County on WBEZ’s government and politics desk. Follow her @kschorsch.
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These coveted COVID-19 treatments can prevent hospitalizations — but Illinois doesn’t know who’s getting them - Chicago Sun-Times
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