With damaged airways, Kai Levenson-Cupp, 19, lives in fear that COVID-19 could worsen the asthma that already leaves him gasping for breath.
Brooke Vittimberga, 25, has a weakened immune system from complications of a bone marrow transplant, so is also very vulnerable to the virus.
But neither of these serious health problems is likely to get them to the front of the COVID-19 vaccine line, despite the state’s newly expanded eligibility criteria that will pave the way for millions more Californians to get vaccinated starting March 15. For vaccine access, they have the wrong diagnoses.
“I’m terrified,” said Levenson-Cupp of Alameda, whose lungs and trachea were badly burned in a childhood accident and now uses an inhaler to help breathe during exercise, allergies and even the most routine viral ailments.
With vaccine doses still scarce, California on Friday unveiled a list of high-risk conditions and disabilities that qualify for the next phase of vaccination: Cancer, pregnancy, stage 4 kidney disease, oxygen-dependent lung disease, Down syndrome, sickle cell disease, heart failure, severe diabetes, Type 2 diabetes and a weakened immune system from a solid organ transplant.
The list of 10 conditions is narrow, designed to prevent a surge of demand from anyone with a minor ailment. Health care providers must verify a person’s health status. This next phase will add another 4 to 6 million people to the current list of 13 million vaccine-eligible Californians.
But an array of other serious medical conditions – such as cystic fibrosis, dementia, hypertension, Type 1 diabetes and some rare genetic diseases – are not included, even though there is early evidence that they’re linked with worse outcomes in COVID-19 patients.
The dilemma is leaving millions of Californians with rare conditions at risk, critics say, as the state tries to balance the needs of those most vulnerable to the pandemic. Already, Californians who are 65 or older, front-line health care workers and first responders and some teachers and farmworkers qualify for the vaccine. But Friday’s announcement of the next phase was sure to leave many at-risk residents waiting their turn.
Vittimberga is one of them. The Stanford graduate who dreams of going to medical school is a survivor of acute myeloid leukemia who developed graft vs. host disease, a rare condition when a transplanted immune system attacks the body after a bone marrow transplant.
If she contracts COVID-19, her odds are grim: 32% mortality, according to one recent study. But the state will prioritize for vaccination those whose immune systems are weakened by solid organ transplants, not — at least not yet — bone marrow transplants.
“My concern is that I’ll be excluded, even though I’m at very high risk,” said Vittimberga, who wears two masks and glasses to prevent COVID-19 during her frequent hospital visits.
The list of eligible conditions is subject to change as additional scientific and state-specific evidence is analyzed by the California Department of Public Health, according to the state.
The state drew its recommendations from a U.S. Centers for Disease Control and Prevention document created in December as a resource for people who might need to take extra precautions to avoid contracting the virus.
The CDC list is also being used as a distribution tool for other states, including Connecticut, Massachusetts, New Hampshire, Maine, New Jersey, North Dakota, Texas, Washington and New York.
States are free to create their own vaccine priority lists, which are stirring different controversies.
In New Jersey, smokers are on the list. Washington, D.C., is offering the vaccine to anyone with a body mass index over 25, a measure of obesity; in California, the cutoff is 40. Unlike California, Tennessee will offer the vaccine to people with both Type 1 and Type 2 diabetes.
One problem is that the CDC list is based on research of large numbers of COVID-19 patients or sets of smaller studies. So to make the list, a condition has to be common enough that many people have it — and have been sickened by the virus.
This means that people with rarer conditions – such as spinal muscular atrophy, lupus, multiple sclerosis, Crohn’s disease or ankylosing spondylitis — are not included.
The CDC guidelines were never meant to inform vaccine distribution, and “may not include every condition that might increase one’s risk for developing severe illness from COVID-19,” the agency said.
The lack of data does not mean a lack of risk, said Britt Dorton, 24, whose diagnoses of Ehlers-Danlos, a connective tissue disorder, and other conditions can rush her to the hospital with a dislocated joint or sudden change in heart rate.
In some cases, fear of COVID-19 has shrunk patients’ network of friends and family who help support them, she said. Those who live on disability checks, in crowded housing, have the opposite problem — they can’t isolate.
Even if someone’s condition doesn’t increase their risk of COVID-19, the chronically ill rely on regular care at hospitals or doctor’s offices that put them at an increased risk of the virus, or on caregivers who may have been exposed, said patients. Some people are skipping care to reduce their risk.
“I’m constantly in hospitals where there are COVID patients. Last week, I had to go to three hospitals,” said Vittimberga.
“I’ve been very sick, in the ICU before. I don’t want to go back,” she said. “It would be such a relief to be vaccinated.”