An inflammatory lung disease puts Nate Engebrecht at increased risk from the coronavirus. When he was hospitalized last year with influenza, doctors gave the Milwaukee college student respiratory therapy every four hours to keep air moving through his lungs.
They found hope with the arrival of vaccines, figuring the 19-year-old would be next in line for a shot. But because vaccine supply is still so sharply limited, Wisconsin officials say they don’t know when residents beset by serious conditions, such as chronic obstructive pulmonary disease, will be eligible.
An estimated 81 million adults have conditions that the Centers for Disease Control and Prevention identifies as posing an increased risk for severe covid-19, the illness caused by the coronavirus. In December, the CDC designated that group a vaccination priority — after health-care workers, nursing home residents and staff, older adults and some front-line essential workers.
But those recommendations have plainly become unworkable, as states veer from federal guidelines and chart their own paths, often in seemingly random ways. The result: Access to a shot can depend on what side of a state line you live on.
Jonathan L. Temte, associate dean for public health and community engagement at the University of Wisconsin and a liaison to the covid-19 work group that helped the CDC advisory panel issue its guidelines, called the result a “free-for-all.” The decisions could become even more torturous when a third vaccine made by Johnson & Johnson — which is expected to gain regulatory approval this weekend — joins the mix, though with only a trickle of supply at first.
The situation is intensifying anxiety for some of the most medically vulnerable people in the country. And it is causing them — or their family members — to make extraordinary personal appeals.
At President Biden’s recent town hall in Milwaukee, Kerri Engebrecht asked for help getting her son a vaccination. “The states make the decision,” Biden told her, lifting his hands, as the mother pursed her lips.
Other patients have entered vaccine lotteries offered by their hospitals.
A Nevada woman’s Stage 4 lung cancer did not make her eligible to be vaccinated, but because she works part time at an animal rescue shelter in Las Vegas, she was considered a priority recipient as a front-line community support staffer.
“I literally started crying,” said Lysa Buonanno, 49, of Henderson, Nev. When she got her first shot, she was overcome thinking about the “odd circumstance of getting that job a year ago,” she said. “I don’t have much time left.”
People like Buonnano and the Wisconsin college student — residents ages 16 to 64 with high-risk conditions — represent about 40 percent of those the CDC recommends for early access.
A recent Kaiser Family Foundation analysis found wide variation in how states are slotting these people into priority tiers. Most states have not yet opened up eligibility to people with high-risk medical conditions.
Of those that have, some have cleared people with just one medical condition for immunization, while others have made two conditions necessary. Some states, including Connecticut and Nebraska, have removed this population entirely from priority consideration, using age alone to determine who goes first.
“Are we missing some people? Absolutely,” said Margaret Woeppel, vice president for quality and data at the Nebraska Hospital Association. “But we’re working with our hospitals to get these people covered as soon as possible.”
Jennifer Kates, a senior vice president at the Kaiser Family Foundation, said eligibility decisions present “impossible choices for states.” But the policy discrepancies, she said, “contribute to the anxiety everyone feels about the pandemic.”
“Everything about covid-19 comes down to where you live, whether it’s exposure to the virus, access to testing,” she said. “And now, your place in the vaccine line.”
State and local officials are raising concerns about the need to verify someone’s medical history and how they would do so, CDC clinician Sara Oliver said during a recent webinar hosted by the Infectious Diseases Society of America. As a result, a CDC immunization panel is likely to tell states next week that age-based eligibility alone can be a strategy when vaccines are scarce, according to two CDC officials who spoke on the condition of anonymity because discussions are ongoing. The CDC list is also expected to be updated in the coming weeks, the sources said.
Even more fundamental is the definition of what constitutes a high-risk condition. In several places, controversy flared when smoking and obesity were included among the risk factors.
Early in the pandemic, the CDC created a list of medical conditions that placed people at increased risk of hospitalization and death. Those include cancer, chronic obstructive pulmonary disease, heart disease, pregnancy, smoking, obesity and Type 2 diabetes.
The list was never intended to be used for vaccine prioritization. But in the absence of other guidance, it has assumed outsize importance — and turned out to be imperfect.
“Do you go by what’s been studied or what seems logical?” said Ross Goldberg, president of the Arizona Medical Association. “In all likelihood, the virus doesn’t care if you’re Type 1 or Type 2 diabetes.”
The inclusion of smoking as a risk factor proved especially controversial.
New Jersey Gov. Phil Murphy (D) faced backlash last month when smokers were included on the vaccine priority list alongside people 65 and older and those 16 to 64 with medical conditions. That put smokers ahead of teachers.
State and public health officials said the decision was based on studies showing people who smoke or have a history of smoking are more likely to be hospitalized or die of covid-19 than are nonsmokers.
“I understand the optics here and that attacking folks who took up the habit of smoking and who are now addicted may be politically expedient,” Murphy said at a news conference. “But at this time, we are stuck in a position where we have to prioritize limited [federally] produced — or at least distributed — vaccine doses based on medical fact, and not on political want.”
In D.C., officials initially sought to limit medical condition eligibility to adults 50 and older but changed course after younger adults with serious conditions argued they, too, were endangered. Their stories “tug at the heart,” Ankoor Shah, the pediatrician running the city’s vaccine program, said at a D.C. Council meeting last week.
The city significantly shrank the pool of people who qualify by eliminating two conditions that had earlier been on the list: people who smoke and people whose body mass index classifies them as overweight but not obese. The District said people with one of more than a dozen qualifying medical conditions will become eligible for vaccination March 1. Residents with those conditions in designated Zip codes began booking appointments Thursday.
The differing approaches underscore the challenges for officials and the confusion for patients.
Minnesota, like many other states, is weighing who should be next in line and hopes to open eligibility for people with underlying medical conditions in March, said Kris Ehresmann, infectious-disease director at the state’s health department.
Like state officials elsewhere, Ehresmann gets a constant stream of emails from individuals and groups asking for people with specific medical conditions to be moved up in the line. She hopes the state will rely on the CDC’s list of conditions, which gets updated as more data becomes available, because state officials want their decision-making process to be fact-based “and not because somebody emailed us so many times,” Ehresmann said.
Most states do not provide details on how they’re confirming medical eligibility, or if they’re even trying, according to the Kaiser analysis. Last week, New York expanded eligibility to include anyone with an intellectual or developmental disability; a broader category of pulmonary disease; and anyone in an immunocompromised state, including having HIV. The state is relying on people’s word as proof they have a designated medical condition.
In Colorado, it will be spring before high-risk people will be included in the next priority group, according to the health department website. There’s a catch: People must have two medical conditions. Those with one condition will be pushed further back in line.
Jamie Vigil, 39, a cancer patient who lives in Pueblo, Colo., doesn’t want to wait. She entered a vaccine lottery at two health systems that employ her doctors. If she scores an appointment, she has 48 hours to respond. She has endured more than three dozen surgeries to remove a succession of skin cancer tumors. Her parents were eligible to get vaccinated because one works in a nursing home and the other is a first responder. Both tried to give their appointments to Jamie, to no avail.
If she got covid-19, “chances are I would not survive because my immune system is so weak,” Vigil said. “I’m worried like everyone else.”
The patchwork of guidelines is especially confusing for patients and clinicians who live near a state line.
In Connecticut, Gov. Ned Lamont (D) announced Feb. 22 that the state would move to a strictly age-based prioritization schedule for speed and efficiency. Brita Roy, an assistant professor at Yale University’s medical school and a general internist at Yale New Haven Hospital, said her patients are calling to plead for the shots.
“We are next door to New York, and New York has opened to adults with chronic conditions at higher risk, and they want to know when they will be eligible,” Roy said.
In Louisiana, people with chronic conditions have to be at least 55 years old to be eligible for a coronavirus shot. But in neighboring Mississippi, eligibility has been expanded to include people 16 to 64 who have serious underlying conditions. Many younger adults in Louisiana have these conditions, said Sophia Thomas, a nurse practitioner in New Orleans.
“We rank last or near the bottom for many of these conditions like diabetes and obesity,” Thomas said.
In Wisconsin, Nate Engebrecht’s lung condition may make him eligible for a vaccine in middle to late April, said his mother, Kerri. If he lived in neighboring Illinois, her son would have been eligible Feb. 25. Kerri Engebrecht has been in touch with Biden administration officials almost daily on her request for Wisconsin to make leftover doses available to the most vulnerable sooner, she said.
In Nevada, Lysa Buonanno, who is missing part of her right lung, knows there’s little chance her weakened immune system would save her from a bout of covid-19. Diagnosed in 2011 with a rare form of Stage 4 lung cancer that had spread to her spine, lymph nodes, pelvis and ribs, she never imagined surviving almost nine years.
She has scheduled her second shot — one week after chemotherapy — and then plans to drive eight hours to Reno to visit her daughter, Devin.
“She’s turning 21,” Buonanno said. “I didn’t think I’d be there for this day.”