Covid vaccines and drugs are free. But for many immunocompromised patients, protection comes at a cost
To tell the truth, Scott Selman didn’t mind the pandemic at the beginning. He was a solitary man who spent his weekends on home construction and gardening projects, and his weekdays at the Anchorage steakhouse his family had owned for three generations. Always the kitchen and his back office; he could never backslap and chitchat with the patrons like his brother, the face of the business.
He had plenty of experience with even greater isolation. In 2011, Selman underwent a double-lung transplant after a hereditary disease destroyed his own. The immunosuppressants he took to prevent rejection also meant he had to wear masks and avoid crowded areas.
When the lockdowns started, “it was like welcome to the club, everybody,” Selman said. “I did the best I could. I’m not a real people person anyway, so I didn’t have any, like, emotional detriments.”
But then the pandemic kept dragging. The first waves ebbed, only to give way to Delta, which receded into Omicron. Vaccines brought little relief. The same immunosuppressants that kept his immune system from destroying his lungs also kept it from responding properly to vaccines.
“Suddenly Omicron (came) and it’s super contagious,” he said. “I started getting a little worried.”
So he was excited when his transplant team at the University of Washington called and told him there was a new drug available that might protect him and other immunocompromised against the virus. They just didn’t mention how hard it would be to find a dose, how much it would cost, or how head-scratching strange the entire thing would be.
“That was the weirdest thing,” Selman said afterwards. “And it gets even weirder.”’
Protection at a cost
For most Americans, protection from Covid-19 came free of charge. It was a rare bright spot in America’s failure-ridden pandemic response: HHS bankrolled the development of the coronavirus shots and made them free to every US resident, expending millions to set up vaccination sites and conduct outreach.
But for around 3% of Americans, those vaccines don’t quite work. Seven million Americans have genetic conditions or take cancer, transplant or other drugs that suppress their immune system. They might get some protection from a shot, or none at all.
Many have spent the past year turning their arms into pin-cushions, collecting up to five or more jabs in hopes the next one will finally boost their antibody levels. (Officially, up to four shots are now authorized for this group.)
The Trump and Biden White House had a plan for these patients: Evusheld. Developed by AstraZeneca and backed with over $1.57 billion in HHS funds, Evusheld is similar to antibody drugs used to treat Covid-19 but with one tweak: It’s engineered to stay in the body for around 6 months, meaning it could provide long-term protection from the virus.
After several studies, Evusheld was finally authorized in December. For a subset of patients, it represented pandemic deliverance.
“I kind of never got to leave my house since my transplant,” said Jullie Hoggan, a speech therapist in the Las Vegas suburbs who got a kidney transplant in January 2020. “Once Evusheld came out, you know, I was hoping to get that.”
Like many, though, Hoggan discovered the drug was not easy to find. The government did not set up a clear national distribution plan, as it had with vaccines. Some medical centers got it, others didn’t. Some, especially large transplant centers, got it but limited access to only a small subset of patients. Some got it but the doctors, nurses or administrators whom patients called didn’t know and turned them away.
Hoggan called clinics for days searching for doses for both herself and a small Facebook group of immunocompromised locals. She was ecstatic when one woman finally called back and left a voicemail saying her office had spare doses — until Hoggan phoned her and learned how much it would cost: $1,000.
The nurse said “‘We’re happy to do it. We’re ready to do it. It’ll be $1,000-a-person. Cash,’” Hoggan recalled. “I was like, Holy crap. And I said that’s an awful lot of money for a drug that’s supposed to be free.”
Hoggan wasn’t alone. Unlike with vaccines, the government doesn’t pay for the cost of administering Evusheld, only the cost of the drug itself. That means the immunocompromised can be on the hook for consultations, facility fees and other common hospital charges when they get their shot.
Medicare will usually cover these costs, and there’s a federal fund for the uninsured. But patients with private insurance can face a wide range of different fees.
Evusheld’s uneven distribution has only compounded the issue. Because some regions have no availability and other have surpluses, patients have driven hours over city or even state lines to get doses in places that don’t take their insurance, accruing travel bills and larger medical costs.
“Many people are having to go out of network,” said Rob Relyea, a Microsoft engineer who set up a website to track Evusheld doses after his own wife, a cancer patient who had received B-cell depleting treatment, struggled to get access.
Or they’ve turned to places that don’t take insurance at all. The nurse that called Hoggan worked for the local branch of Concierge MD, a national chain of concierge clinics that advertises $999 for Evusheld on its site. Abe Malkin, founder of the chain, defended the price, noting they offer at-home service and that a nurse has to stay for an hour to watch for adverse reactions, as the FDA recommends. He added they have since lowered the price to $799.
“Some of our patients are home-bound, it’s risky for them to travel,” he said. “So they’re willing to pay a premium for them to receive care at home.”
Rena ContiIt’s impossible to tell how common these charges are. Rena Conti, who studies drug and healthcare policy at Boston University, said Evusheld and other antibodies have not been on the market long enough to generate that data. But early work suggests the out-of-pocket costs may be “quite significant,” she said.
A woman with a rare kidney disease in Los Angeles told Endpoints News she was charged $1,100 for her dose, most of it for a 10 to 15-minute physician consult. A transplant patient in Virginia said her insurance was billed $1,100 for her shot, $296 of which they had to pay. Michelle Fontenot, a transplant patient in Illinois was given an estimate of $2,890 from one local hospital before getting the drug elsewhere, where she was given a $400 estimate. (For every patient in this story, Endpoints reviewed copies of medical bills and other billing documents.)
The problem got worse last month when the FDA recommended doubling the dose of Evusheld, forcing many patients to make a second visit. Lisa Brooks, who has an immunodeficiency disease, paid $250 cash at a clinic in California for a first dose. For a second, she was initially billed $4,549 by Stanford Health Care. She would have had to pay just over $1,000 herself, between what was left of her deductible and what was not covered by insurance.
After calling multiple times, she said they lowered it to $3,069, adding there was an erroneous charge and that they never actually intended to have her pay any portion of the bill. Brooks has worked for medical companies, and worries about patients with less experience navigating the system.
“I’m fortunate to know what I’m doing and I’m worried about all the people that don’t have my experience,” she said. (Stanford declined to comment, citing patient confidentiality.)
Part of the problem, Conti argued, is that the US focused all its efforts in 2021 on getting as many people vaccinated as possible. And in theory, making treatments free can actually disincentivize vaccination.
“It was like yet another incentive to go out and get vaccinated — the potential threat of having very significant out-of-pocket costs,” she said.
Many immunocompromised people are vaccinated, though. It just didn’t work. They argue the current federal policy means they’re paying hundreds of dollars for protection other Americans got for free. And they wonder about other immunocompromised people who don’t have the resources to jump through the hoops they did.
“Can you imagine if everyone in the country had to pay hundreds of dollars for a vaccine?” said the Virginia woman, who asked to remain anonymous to avoid upsetting her transplant team. “It’s really the disparity, every immunocompetent person gets their protection for free. And I just can’t tell you how pissed off everyone is.”
‘I feel desperation’
Selman’s transplant team was in Seattle, so they suggested he look on a government website for locations in Alaska with doses. But only one location showed up in all of Alaska, and it was in Juneau, a city 500 miles away, accessible only by ferry or plane.
He called around, and eventually, a state health official told him there was a site in Anchorage, a clinic called Weka. Selman had never heard of it and the website said little about Evusheld, but his doctors told him he needed it. So he called and made an appointment for 10 am the next day.
He pulled up not to a doctor’s office, but to the wide-open parking lot of a shut-down hotel. When he walked inside, there was a registration sign above the check-in desk and signs offering various treatments outside the guest rooms. A receptionist took down his information and told him he would have to pay $550 by credit card before he could even be treated. They would then bill his insurance another $950, she explained, and if insurance didn’t cover it, he would have to.
Selman thought it sounded bizarre — thought the whole thing was bizarre, from the repurposed hotel to the upfront cost, to the mysterious absence from the site — but felt he didn’t have a choice but to hand them his Visa.
“I’m extremely susceptible. I feel desperation,” he recalled. “My team said I need to get this. I want to get it because I had exhausted all my other resources and the state has sent me there, so okay.”
Then things got stranger, Selman said. Evusheld is authorized as two shots in the hip, but a nurse gave him the antibody by IV infusion. Selman, deferential to doctors since they saved his life a decade prior, said nothing. But afterward, he said, his transplant team called and reprimanded Weka, who said they hadn’t known and recommended Selman come back in 45 days.
Just weeks later, though, he got a call from a state official saying that Weka had shut down. The official pointed him to a site at a nearby mall, where he was given the antibody properly free of charge. He never heard from Weka for the $950, but they also never refunded the $550 charge.
A spokesperson for AstraZeneca said it was “concerning” that the clinic administered the drug by IV and referred Selman’s case to the medical affairs team for investigation.
Weka CEO Crystal Herring declined to discuss Weka’s pricing policies or Selman’s case, citing patient confidentiality, even though Selman authorized the company to do so.
She said Weka would conduct a review of its Evusheld administration, adding that the company was asked by Alaskan officials to set up the site as the Delta wave strained local hospitals, forcing the company to ramp up and treat many patients in a short period of time. She said they closed in February because of dwindling demand.
“WEKA was not aware of the potential of any billing or treatment discrepancy of the nature described in your inquiry,” she said in an email. “However, due to the large volume of patients/procedures in a short period of time and the transition of operations and personnel, it is possible that information relative to said raised concerns had not yet reached WEKA management for processing.” A spokesperson for the Alaska Department of Health did not respond to repeated requests for comment.
Although a possible outlier, Selman is not alone, at least when it comes to steep charges. Last month, Derek Eisnor, a medical officer at HHS, said on a call with state public health agencies that they had received reports of places “charging several thousand dollars” for various antibody drugs.
“Obviously, this would be in violation of our planning priorities,” he said, “which again is to maintain equitable access of all procured therapeutics for all Americans, regardless of their ability to pay.”
Selman’s steakhouse, Club Paris, held up through the pandemic well, bolstered in part by a pair of PPP loans. Locals still come in at night for the petite filet and king crab combo, the restaurant’s special, assured that because it’s Selman’s place, the restaurant is taking the proper precautions. He was able to weather the charges. But life still feels uncertain.
“Everything is shifting sand. And when you’re immunocompromised, it’s not just inconvenient,” he said. “It could be death.“
‘We want to get them to you’
Not every state has had a massive scramble for Evusheld. After Hoggan, the Nevada transplant patient received the call asking for $1,000 per dose, she wrote an angry letter to the state health department, asking why the drug wasn’t more widely available. To her surprise, she got a call just four days later.
“We want to get them to you,” Dave Wuest, executive secretary of the Nevada Board of Pharmacy, told her. “We just don’t know how to find you.”
With $19 million in Covid-19 relief funds, Wuest and others soon set up a system to reach patients like Hoggan. Any Nevadan can now call a number and be screened for eligibility for Evusheld or other Covid-19 therapeutics and directed to a treatment site. All costs are covered by the state, including house visits for homebound residents. Hundreds of people have gotten Evusheld through the system, Wuest told Endpoints.
That includes Hoggan and her Facebook group. “This is how states should be doing it,” she said.
Nationally, though, there’s been little sign of improvement. Conti, the BU professor, said Congress could eliminate the administrative costs patients face by adding it to a list of preventative treatments that private insurers can’t charge for, such as flu shots.
But there’s been no movement yet to do so. On the contrary, Congress has stalled on funding on new coronavirus treatments, and Biden officials now warn they could run out of funds to buy more Evusheld doses. Soon, there might not be doses even for those who can afford to pay.
“I have hopes things are improving, but not fast enough,” said Relyea, the Microsoft engineer tracking Evusheld doses. “This should be treated with the same urgency as the vaccine wave.”
