It’s been close to a year since Jean Burke-Spraker has seen a friend face-to-face.
She suffers from Addison’s disease, a rare autoimmune condition that affects the adrenal glands, and her fears of what might happen if she contracts COVID-19 have led her to refrain from in-person socializing during the pandemic. If she feels the need for physical contact, she has to rely on her two dogs, Chip, a toy poodle, and Peanut, a Chihuahua.
“I just miss going out to a restaurant and talking to a waiter,” she said. “Those people who are just those casual connections you see all the time, they’re just gone.”
Burke-Spraker, 49, said her condition is well-maintained and she didn’t expect to be in line for vaccination ahead of relatives who work in health care and education. She did think, though, she would at least be invited to get in line before the general population. But when Philadelphia released its list of high-risk conditions that would make those with them eligible for doses in the next wave of vaccination, Addison’s disease was not among them.
“I expected to be on that list,” she said, “so I’m kind of surprised I’m not.”
Addison’s is associated with an impaired immune-system response, making people vulnerable to more serious consequences if they catch the coronavirus. That isn’t the only condition not included in the city’s high-risk category. Cystic fibrosis, asthma, dementia, hypertension, and liver disease also didn’t make the cut, even though there is evidence, federal authorities said, that each may be associated with worse outcomes in COVID-19 patients.
Fear of their vulnerability to the virus has restricted the lives of the people with those conditions. People with cystic fibrosis, for example, have been “extremely vigilant about avoiding exposure, leading to a heightened sense of isolation as well as practical challenges related to work, school, and other aspects of daily life,” said Jessica Rowlands, a spokesperson for the Cystic Fibrosis Foundation’s Delaware Valley chapter.
Right now, there are no plans announced for when people with those conditions could be vaccinated.
But Caroline Johnson, the city’s deputy health commissioner, said, “I plan to revisit that list.”
The scarcity of vaccine doses that has complicated distribution for a month now is forcing public health officials to make hard choices about where the need is most dire.
“I understand that there is going to be, like in any triage situation, imperfections in the selection of who moves forward and who waits,” said William Gray, president of the Southeastern Pennsylvania Board of the American Heart Association and chief of the division for cardiovascular disease at Main Line Health. “It has to be distributed in the most rational way. That was the attempt they’re trying to make here.”
Philadelphia is the only county in the state where people 16 to 64 with high-risk conditions are eligible to receive doses in phase 1b, the next round of the vaccination process that includes people 75 and older and essential workers. That’s as many as 400,000 people, and it could take months to vaccinate them all. Elsewhere in Pennsylvania, people with high-risk conditions aren’t eligible until phase 1c, though federal authorities have recommended a change in that policy. The state has not yet shared its high-risk condition priorities and is still reviewing federal recommendations.
The conditions the city identified as high risk, which include cancer, type 2 diabetes, heart disease, and chronic obstructive pulmonary disease, were drawn from a U.S. Centers for Disease Control and Prevention document that identified them as illnesses that data demonstrated clearly contribute to worse outcomes in COVID-19 patients.
“It was very clear we had to come up with definitions for some of these priority groups,” Johnson said. “If you just say people with underlying medical issues, then you’re potentially carting in the entire population.”
Those conditions the city listed, though, aren’t the only ones suspected of making people more vulnerable to COVID-19. The CDC also identifies illnesses that appear to contribute to more serious COVID-19 illness, but the evidence is less robust. With doses in short supply, Gray said, health officials are trying to get the most benefit out of the doses they have.
“There’s probably pretty good evidence that patients with hypertension don’t do as well once they develop COVID infection,” Gray said. Hypertension was not among the city’s high-risk conditions. “But if you rank them as compared to someone with cardiomyopathy, the cardiomyopathic patient is going to do worse.”
The city’s priorities serve a dual purpose. Philadelphia has a high poverty rate and is majority nonwhite. Lack of access to health care and systemic bias in health systems mean people of color and those in poverty are more likely to have a preexisting health condition and thus have been hit particularly hard by COVID-19. Prioritizing those conditions, officials said, is a way to make vaccine distribution more equitable.
“We do see a disproportionate number of Black and brown patients with kidney disease, heart conditions, obesity, sickle-cell disease, and with diabetes,” said Tony Reed, chief medical officer at Temple University Health System.
Further complicating the process is growing confusion, and at times incorrect information, about who is eligible.
Katelyn Langjahr, 27, has chronic kidney disease, but when she put her information into a digital screening portal run by a city partner, Philly Fights COVID, she was told she wouldn’t be eligible until phase 1c, despite her condition being on the priority list. It’s not just her kidney condition that is a concern. A number of other health issues require multiple visits to doctors’ offices each week.
“I’m exposed to doctors’ offices and hospitals a lot,” she said. “It makes me anxious.”
Philly Fighting COVID’s digital COVIDReadi portal, a service designed to give people information on when they could be eligible for vaccination, is still a work in progress, said spokesperson Deanna Sabec, and some categories listed are not aligned with the city’s priorities. The organization, in partnership with the city, is working to coordinate the website with the current priority list, she said.
“The individual with chronic kidney disease may have seen a confirmation from the portal that she was in ‘Phase 1c’ when, in fact, she will be placed in ‘Phase 1b,’” Sabec said in an email Friday. “When it is time for individuals in Phase 1b to make their appointments, she will receive an email from PFC.”
Langjahr, when told she may have gotten incorrect information, said she would get the vaccine as soon as possible.
“I want to be first in line,” she said. “I would do anything to get it right away.”
Langjahr is trying to keep away from others, but she shares a home with family, including a brother who works for Whole Foods.
“I’m around him and exposed to whatever he brings back,” she said.
At Liberty Resources Home Choices, the for-profit, home care arm of a Philadelphia disabled advocacy group, staffers scramble to determine who among their customers, more than half of whom are Black, might be eligible for vaccinations. Clients in need of home care can have multiple conditions that, combined, make them susceptible to serious consequences if they catch COVID-19.
“Somebody who has hypertension may also have high cholesterol. They may also go to dialysis twice a week,” said Fermina Maddox, the company’s executive director. “They have physical as well as mental health disabilities.”
A need for flexibility
For those with conditions that aren’t on the city’s high-risk list, there was one inclusion that left them particularly riled — smokers.
“What surprised me is that they’re actually prioritizing smokers,” Burke-Spraker said. “I can’t help it that my glands don’t work.”
Including smokers and people with obesity, said Jaya Aysola, assistant dean of inclusion and diversity and a professor at University of Pennsylvania’s Perelman School of Medicine, is complicated. While both may appear to be a matter of choice, she said, there are social, political, and historical circumstances that have led to increased rates of those conditions, like lack of access to healthy foods, and the marketing choices of tobacco companies, that increase the likelihood of people smoking, or being obese.
“If we look at more broadly what drives individuals to smoke and sort of the upstream factors to create high prevalence rates of tobacco use in certain communities, you can’t ignore it’s not solely personal agency and lack thereof,” Aysola said. “There’s a targeting of tobacco on certain communities.”
Public health officials also said trying to prevent deaths during a pandemic isn’t the time or place to penalize people for vices. Why people smoke, or are overweight, isn’t relevant. What matters, Johnson said, is that they’re at greater risk of serious illness or death from COVID-19.
“I think what we can’t do is start weighing the value of people’s lives,” she said. “That’s not public health’s call to impose any kind of a value judgment on it.”
Since early in the pandemic, Ala Stanford, a pediatric surgeon and founder of the Black Doctors COVID-19 Consortium, has pushed to get tests and care to underserved Philadelphians. Key to reaching those communities, she said, is making help easily accessible, whether it’s a COVID-19 test or vaccine doses.
Her organization is hosting one of the first vaccination clinics for the 1b population Saturday and Sunday at Deliverance Evangelistic Church in North Philadelphia. She recommended health-care providers use their best judgment in deciding who should get vaccinated.
“If you have a pulmonary condition like cystic fibrosis, please come see me,” Stanford said. “There’s no way I wouldn’t vaccinate you.”