Josefina Andrade felt her chest closing in as she walked up a flight on 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.
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 who providers and pharmacies are dispensing them to. That’s after two years of a pandemic where long-standing 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. There’s a stark map on the state public health department’s website, showing large pockets — in some cases spanning multiple counties — where no providers apparently have therapeutics. That raises 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.”
In an interview, she said the state has escalated the plea to 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 distributes them to hospitals, pharmacies and clinics. But it doesn’t now require them to report back to the state to whom they give it.
And with omicron fading, Barnes said there might be little appetite for the state to issue its own mandate to track therapeutics.
The cumbersome way to get a coveted COVID-19 therapy
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 it 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.
So many of Erie’s patients already fit into the buckets of people who should be prioritized. This group of clinics treats mostly low-income and uninsured patients of color. Erie can prescribe pills that patients can pick up at a pharmacy, but it doesn’t have the capabilities to give infusions some patients may require. That leaves them leaning on other providers, which has proved challenging.
Where COVID-19 therapeutics are available
Underneath Rush University Medical Center 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. During a recent visit, robotic carts were humming along the expansive concrete corridors, funneling supplies that will make their way upstairs.
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 fridge the size of a big walk-in closet. This medication is for COVID patients who arrive upstairs to an infusion center, ready to sit in a chair to hopefully kick the virus instead of being admitted to Rush.
A short walk from here, inside Rush’s outpatient pharmacy, passed aisles of drinks and snacks, is Matthew Kemper’s office. This is where the Paxlovid and Molnupiravir pills are kept.
“This is my office, sadly,” quips Kemper, director of outpatient pharmacy at Rush. It’s packed inside with papers and boxes. He pulls out packages of the pills.
“I think we have 75 courses of this available right now,” Kemper said, holding up the Paxlovid. “And this is the Molnupiravir, and we have about 280 courses of this available. The one that’s probably a little bit less effective is the one we have more of.”
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. These drugs were only approved for emergency use in December.
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. In other words, 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, if patients were willing to take them, but no pills to prescribe, an easier method for many people.
“People at the office level are wondering, OK, 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?”
Eric Bandy sees it differently. He owns a group of pharmacies called Bandy’s in a handful of small communities downstate. They’re among just a few locations in a vast rural region with any treatments. Less than two weeks ago, the first shipments of Paxlovid pills arrived at Bandy’s.
“I feel like we have to trust them in the fact that they’re sending it to the places where it’s needed,” Bandy said of Illinois public health officials. “I don’t see why they would have any reason not to. They’re not making any money. No one’s paying for it.”
Separately, state public health officials have shipped Sotrovimab, the infusion treatment through IV, around the state. These details aren’t in the federal database. The state has allocated these treatments a bit differently.
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 takes care of many nursing home residents, and another that had its vaccine supply cut off last year in Chicago for allegedly misallocating thousands of COVID-19 vaccines, as well as several community hospitals and hospital pharmacies, according to data the state shared with WBEZ.
Where the treatments are delivered isn’t necessarily where patients are receiving them. Some providers told WBEZ they are splitting their therapeutics supply with other providers in their regions, and the state is encouraging providers to share spare doses.
Barnes at the Illinois Department of Public Health says the state is dependent on how many therapeutics it receives from the federal government to then distribute to providers across Illinois. At one point, there were requests for more than 9,000 doses of Sotrovimab, and the state only had about 2,000 doses to give, she said.
Providers also need to sign up to request these treatments, and not every provider has, particularly in rural areas, Barnes said.
Then, the health department uses an algorithm to decide where to allocate the therapeutics. It takes into account which providers treat the sickest patients; COVID-19 case, hospitalization and vaccination rates; and social inequalities in various communities. The state also prioritizes high-risk groups including long-term care facilities where the coronavirus spreads faster. And Barnes said the state wants therapeutics available for patients within a 20-mile radius.
Barnes said other states are concerned about not having enough demographic information about patients who are receiving COVID-19 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 of its pharmacies around the state. 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.
A spokeswoman for the Chicago Department of Public Health said the city is working on how to obtain demographic information from providers of patients who receive therapeutics. But she would not explain how and said no one was available for an interview. She referred additional questions to the state.
Some physicians and pharmacists told WBEZ they’re tracking this information. But others are not. Many noted that 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.
Getting the word out to patients: treatments exist
Now that the crush of omicron has receded, and the intense demand for therapeutics has waned, health care providers find themselves scouring for patients who could use them.
At UI Health in the bustling Illinois Medical District, a sprawling campus on the Near West Side with three other hospitals, a team evaluates people who tested positive for COVID-19 in the last day or two to determine if they should be offered therapeutics. UI Health is a big teaching hospital that has received some of the most therapeutics, according to state and federal data.
The team prioritizes patients who would qualify: Did they have a transplant? How old are they? Are they vaccinated? Then they start calling around, asking if these patients want a therapeutic so they don’t wind up in the hospital.
“But at this point, honestly, with the supply we have, we basically end up calling everybody,” said Dr. Scott Borgetti, an infectious disease specialist at UI Health who makes these calls. “We just still start with the highest-risk people.”
UI Health’s pharmacy will ship Paxlovid to patients the same day, he added. Other health systems and clinics are doing this, too. Some are prescribing therapeutics to patients in the emergency department.
Borgetti points out that the therapeutic rollout is different from the vaccine rollout. Everyone should be vaccinated, he said, but not everyone needs or qualifies for a therapeutic.
But there’s another big difference from vaccines — the untold number of patients who could benefit 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.