How America’s Vaccine System Makes People With Health Problems Fight for a Place in Line

“We have a long history of doing risk-based recommendations based on lots of data,” said Dr. Grace Lee, a member of the C.D.C.’s vaccine advisory committee and a pediatrician at Stanford University. “The problem with Covid is, the information is coming in now, and it’s different than it was even two months ago when we were deliberating about vaccine allocations.”

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 M. Cuomo of New York after growing concerned that the state might not explicitly include people with H.I.V. on its priority list for shots. The groups cited the state health department’s own research on H.I.V. 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 H.I.V. 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 H.I.V. patients on the priority list.

Patients and representatives for people with H.I.V., liver disease, asthma, Type 1 diabetes, pulmonary fibrosis, cystic fibrosis and intellectual and developmental disabilities said they have started advocacy campaigns at the state and national levels, with mixed success.

In Michigan, Laura Bonnell, who has two daughters in their 20s with cystic fibrosis, said she extracted a promise from officials in her county this week that they would soon offer vaccine appointments to any cystic fibrosis patient over age 16.

Janelle B. Smith

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