How America’s vaccine system makes people with health problems fight for a place in line

As states have begun vaccinating Americans with medical conditions that may raise their risk for a severe case of COVID-19, they are setting widely varying rules about which conditions to prioritize.

The morass of guidelines has set off a free-for-all among people with underlying health problems like cancer or Type 2 diabetes to persuade state health and political officials to add particular conditions to an evolving vaccine priority list.

In Royal Oak, Michigan, Megan Bauer, who lives with cystic fibrosis, a genetic disease that can cause serious lung infections, said she was grateful that other people with heightened risks were getting vaccinated: health care workers, teachers, her 81-year-old grandmother. If Bauer lived in Montana, New Mexico, Virginia, Washington, D.C., or at least 14 other states, she could get the vaccine now, too. But not in Michigan.

“The wait seems never-ending,” Bauer said. “With cystic fibrosis, every day is precious, so losing this time is difficult.”

In the initial months of the COVID vaccine rollout, states sought to balance between prioritizing older people, who are most likely to die from the virus, and people in professions most likely to be exposed to it. Under recommendations from the Centers for Disease Control and Prevention, people with medical conditions that have been associated with an increased risk for severe virus symptoms, were slated to come next.

At least 37 states, as well as Washington, D.C., are now allowing some residents with certain health problems to receive vaccines, according to a New York Times survey. But the health issues granted higher priority differ from state to state, and even county to county.

Some people with Down syndrome may get vaccines in at least 35 states, for instance, but some of those states are not offering shots to people with other developmental conditions. At least 30 states allow some people with Type 2 diabetes to get vaccines, but only 23 states include people with Type 1 diabetes. At least 19 states are making the vaccine available to some people with cystic fibrosis; at least 14 have included some people with liver disease; and at least 15 have deemed some smokers eligible. At least 30 states have prioritized vaccines for people who are overweight or obese, according to the Times survey, though they vary even there, some setting the bar at a body mass index of 25, others at 30 or 40.

Some states require people to prove they have a medical condition, although at least 16 states and Washington, D.C., do not. And at least 12 states allow people to get a recommendation from a health professional to get a shot, even if their medical condition has not been given priority by the state.

In the absence of large, rigorous studies of the coronavirus’s effect on people with other medical problems, medical ethicists said, there are few clear principles to apply to determine a priority sequence among many conditions. Many states are taking their cues from a list of 12 sorts of conditions that the CDC has deemed to have substantial evidence for elevated COVID risks, including obesity, Type 2 diabetes, smoking and Down syndrome. CDC officials have said that they regularly review the scientific literature and will expand the list as warranted.

But some medical ethicists argue that the list itself is misleading, because it suggests that the risks for all diagnoses have been considered and ranked. Is a 50-year-old with Type 1 diabetes at greater risk from COVID than a 25-year-old with sickle cell disease, or a 35-year-old with intellectual disabilities?

The issue has set off a flurry of jockeying by advocacy groups to sway health and political leaders in state capitols to move particular health conditions higher on priority lists.

Because the vaccine rules can be set by governors — who typically consult with hospital officials and their own medical and ethical advisory groups — many appeals have taken a personal bent: “@GovMikeDeWine,” Hanna Detwiler, a bone-marrow transplant patient in Columbus, Ohio, tweeted about her inability to get a vaccine last month, “Do better.”

About three dozen health advocacy groups sent a letter in late January to Gov. Andrew Cuomo of New York after growing concerned that the state might not explicitly include people with HIV on its priority list for shots. The groups cited the state health department’s own research on HIV as a risk factor for getting severely ill with COVID-19. New York ultimately became one of at least 14 states, along with Washington, D.C., to announce that HIV was on the vaccine priority list. A spokeswoman for the state’s Department of Health said this week that New York had always intended to include HIV patients on the priority list.

Across the country, the vaccine eligibility requirements are a moving target. Ohio added bone marrow transplant patients like Detwiler to its list last week after initially offering the vaccine only to those who had received a solid organ transplant. Next week, California, where only some counties have previously offered vaccines to people with medical conditions, will allow shots statewide to millions of people with health problems. That reversed the state’s earlier plan to prioritize shots based solely on age, which sparked high-profile opposition from disabilities rights advocates who used a hashtag #HighRiskCA.

Connecticut recently flipped in the opposite direction, ending plans to expand eligibility for shots to people with preexisting health conditions in favor of priorities based on age. And even some patient advocates who have pushed for inclusion are disheartened by what may be a system where the loudest voices, with perhaps the most funding or political clout, prevail.

“That is not how our public policies should be decided, on who is better at advocating,” said Kara Ayers, director of the Center for Dignity in Healthcare for People with Disabilities, which has created a vaccine prioritization dashboard with the Johns Hopkins Disability Health Research Center to help people with medical conditions track their status.

State government officials say their decisions on which health conditions to include often come down to some combination of evidence, logistics and political reality.

In Michigan, a recent announcement was bittersweet for Bauer. This week, the state expanded vaccine eligibility to people with cystic fibrosis and other medical conditions, so long as they are older than 50.

In 2019, the median age of death for people with cystic fibrosis in the United States was 32, according to a patient registry kept by the Cystic Fibrosis Foundation.

“Most people with CF,’’ said Bauer, who is 24, “may not be in that group.”