As immunocompromised people across the country work to get Evusheld, a potentially lifesaving COVID therapy, several hundred providers of the injections were removed from a federal dataset on Wednesday night, making the therapy even harder to locate.

White House officials had announced March 15 that a planned purchase of more doses would have to be scaled back without new federal funding.

And federal and state health departments aren’t making it easy to find, leaving patients whose hospitals say they don’t have enough of the drug to write desperate tweets and Facebook posts seeking the shots while unused vials sit in the refrigerators of other providers. Few states list on their websites where residents can find Evusheld — most provide no information or link to an incomplete federal map.

The therapy is a pair of monoclonal antibody injections designed to prevent COVID infection. It received emergency use authorization in December for people 12 and older who are moderately to severely immunocompromised or unable to be vaccinated for medical reasons, more than 7 million people. For people who haven’t responded to a COVID vaccine, it could offer lifesaving protection.

According to White House officials, the US will likely run out of Evusheld by the end of the year.

The week before the White House’s announcement, the Department of Health and Human Services repeatedly told KHN that the problem was supply, not money. HHS spokesperson Elleen Kane stated multiple times that the federal government had bought every dose of Evusheld that AstraZeneca could supply in 2022 . But an AstraZeneca spokesperson who declined to be named told KHN that more was available to buy. HHS did not respond to questions about the planned purchase.

HHS expects to receive enough Evusheld for 850,000 people by year’s end, Kane said last week. Even if all those doses come through, the supply would be nowhere near what is needed to treat the millions of people it could benefit.

So far, enough doses to treat 229,000 people have been sent to providers and about one-quarter of that has been used, according to Kane.

After two years of immunocompromised people being left behind by the federal government, “the very least that the Biden administration could do is procure more than enough Evusheld so that everyone who” is eligible can receive the therapy, said Matthew Cortlanda senior fellow working on health care and disability issues at Data for Progress, a left-leaning think tank.

KHN’s analysis of Evusheld provider data published by HHS found that, until March 16, a data file published by HHS included several hundred providers that were omitted from the more user-friendly Covid-19 Therapeutics Locator map.

On Wednesday evening, HHS updated the downloadable data file for the first time in eight days, removing hundreds of providers that hadn’t reported how many Evusheld doses they had used in the past week. Several data columns were also removed, including the total number of doses that had been delivered to each site and the most recent delivery date. This information was not publicly available elsewhere; now people seeking Evusheld won’t find those providers on any federal website and data analysts cannot track the pace at which the therapy is being used.

KHN had flagged several discrepancies between the map and the data file to HHS as part of an investigation into the Evusheld rollout across the country. The data file is now nearly identical to what is used on the map, albeit with a few days’ lag.

In Mississippi, for example, 35 Evusheld providers were shown on the map on March 11. Only half of those were also included in the data file. And the data file included yet more providers that weren’t shown on the map.

HHS did not explain why providers had been listed on the map but not included in the data file.

KHN found that even if an Evusheld provider hasn’t recently reported its supply to HHS, that doesn’t necessarily mean it didn’t have the shots available.

In Pennsylvania, the federal locator map shows only one-third of the hospitals and clinics that have received Evusheld, according to the KHN analysis.

The University of Pittsburgh Medical Center is offering Evusheld to any eligible person with a doctor’s referral, according to Erin McCrearythe director of antimicrobial stewardship innovation and an infectious diseases pharmacist who helped lead the system’s Evusheld rollout. But until last week, people looking for Evusheld in Pennsylvania would not have found UPMC on the federal locator map.

When the health system, which has 40 hospitals and several hundred outpatient locations, first got Evusheld, its supplies were so limited that it had to run a lottery for about 20,000 of their highest-risk patients.

More than 1,650 people have now received Evusheld at 22 clinics throughout the system. McCreary said the word is now being spread through a webpagesocial media, and a flyer and video sent to eligible patients.

McCreary said people from as far away as Seattle, where UW Medicine is still using a lottery system, have reached out to see if they could get Evusheld at UPMC.

HHS requires that providers record how much Evusheld they’ve used into a federal system every business day. McCreary was sending weekly numbers to the state health department, but she said her team hadn’t realized they also needed to fill out the federal form.

Within three days of a KHN reporter asking about the omission, UPMC started reporting its numbers. UPMC can now be found on the HHS map. But because all its doses are sent to a central pharmacy, only that single location appears on the map instead of all 22 clinics where Evusheld is administered.

KHN cannot say how many doses have been used in each state or which states are rolling out the therapy to residents fastest because HHS has declined to make that data public, despite numerous requests. In addition to the hospitals and clinics not shown on the map, all publicly available data omits an unknown number of providers who choose not to be listed because they do not serve the general public, including long-term care facilities and federal agencies.

A bolded disclaimer above HHS’ locator map warns the public against using the map or contacting providers in it directly.

The agency says that people eligible for Evusheld should talk to their doctor, who can find out where patients can get the shots and send a referral.

Jennifer Spring, a registered nurse in the San Francisco Bay Area, took matters into her own hands.

After months of trying to get it at the hospital where she’s treated for multiple sclerosis, she finally received Evusheld at an independent infusion center. “It was such a profound relief, it was almost a little surreal,” she said in an interview the next day.

When a car crash victim is wheeled into the trauma operating room where Spring works, she often doesn’t get a chance to learn the patient’s name before getting to work on saving their life. She certainly doesn’t know if they’re contagious with COVID.

The strong immunosuppressant she takes to treat her multiple sclerosis meant that even after four vaccine doses, she had produced no antibodies.

Spring first reached out to her neurologist months ago to make sure he knew she was interested in getting the therapy. Although “he’s a wonderful doctor,” he didn’t have any information about when she’d be able to get it until February, when he said he’d need to send her case for review by the infectious disease team at the hospital where she is treated.

That’s when Spring said she “mentally gave up on the idea of ??being able to receive it there anytime soon” and looked elsewhere, knowing from her own job how busy that team would be.

Cortland, at Data for Progress, has asked HHS multiple times to remove the warning against patients using the map directly. Cortland said HHS has not responded.

“If HHS is actually concerned about low utilization rates of Evusheld, HHS needs to tear down the barriers they’ve erected to immunocompromised patients directing their own care, and communicate honestly and directly with the American people, instead of hiding behind ‘talk to your provider,’” Cortland said.

And not all hospitals have enough Evusheld to go around.

Dr. Raymund Razonablean infectious disease specialist at the Mayo Clinic in Minnesota, said his program had enough for its most vulnerable patients until late February, when the FDA announced that to prevent infection against new omicron subvariants patients would need double what had been initially given. Although the federal datasets show that the Mayo Clinic has hundreds of unused vials, they have all been reserved for patients with none to spare.

The Minnesota Department of Health told KHN that every dose of HHS allocated to the state has been sent to hospitals and other medical facilities.

The infusion center where Spring finally received Evusheld on March 8 wasn’t listed on HHS’ map because the center last reported how many doses it used just over a week earlier. And California’s Department of Public Health doesn’t publish its own list, instead linking to the incomplete national map.

But the Oakland facility was included in the HHS data table until the recent change. Spring learned that the clinic had Evusheld available from a website created by a Microsoft engineer, which makes that data file easier to navigate.

Once Spring made an appointment online and sent the center’s referral form to her doctor, she got her shots in less than a week. The cost of Evusheld itself is covered by the federal government. But the infusion center was out of network with her health plan , so she had to pay a nearly $200 administration fee.

Spring worries about other immunocompromised people who don’t have the time and ability to find the shots or to pay out-of-network charges. If that was the case, she said, “I would still just be waiting until my health care provider and health care facility were able to figure out when I could get it.”

Two days after she got her shots, the infusion center tweeted that it had extra Evusheld to go around, writing, “So few referrals that we declined shipment this week, no space in the medication refrigerator and over 70% of unbooked appointments.”

Methodology

KHN analyzed data from the covid-19 therapeutics locator map and the accompanying open datasetboth downloaded on March 11.

HHS said it excludes providers that mark themselves as non-public from both the locator map and open dataset. These excluded providers are generally long-term care facilities, prisons, federal agencies, and other organizations that do not serve the public and where most doctors could not refer their patients.

Until March 16, the dataset included providers regardless of how much inventory remained. The map excludes providers who haven’t reported how many doses they had used in the past week even if they’ve recently received new Evusheld shipments. The columns detailing the number of doses delivered and last delivery date were removed in the update.

Some locations appear on the federal locator map but were not included in the accompanying dataset before the changes on March 16. KHN asked HHS about these discrepancies, but HHS did not provide an explanation.

The map’s data disclaimer states that “locations that report fewer than 5 courses of the selected therapeutic are not displayed,” though KHN found that these locations did actually display on the map.

To create the state-level maps, we matched the underlying data behind the locator map with the open dataset from March 11 using provider name, address, city, and state. We then checked each entry and manually matched those where the name or address was written slightly differently across the two files.