'So Angry, So Scared': California COVID-19 Vaccine Rollout Change Leaves Disabled People Behind, Say Advocates

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Alice Wong, a San Francisco-based disability rights activist and the host of the 'Disability Visibility' podcast, says she was dismayed to find out about the state's new vaccine prioritization plan. (Courtesy Eddie Hernandez Photography)

When Alice Wong found out last week that younger people with disabilities in California may have to wait many more months to receive the COVID-19 vaccine, her heart sank.

"This really took my breath away," said Wong, a San Francisco-based disability rights activist and host of the "Disability Visibility" podcast.

Wong has a rare neuromuscular disease that requires her to use an electric wheelchair and ventilator.

"I'm so angry, so sad and so scared. Not just for myself, but for the many people in my community that I care about," Wong said. "I think a lot about very young, disabled, critically ill and immunocompromised people who could die before it's their turn to be vaccinated."

Last week, the state shifted its vaccine allocation plan to prioritize recipients based on age, instead of occupation or underlying medical condition. That change, set to begin in mid-February, will prioritize residents 65 and older, potentially pushing back millions of younger people who thought they were getting close to the front of the line.

The new system, Gov. Gavin Newsom said last week in a somewhat discreet announcement of the shift, "will allow us to scale up much more quickly to get vaccines to impacted communities much more expeditiously."

But that comes as cold comfort to Wong and many other people with disabilities, who say they are at particularly high risk of contracting and potentially dying from the virus because of chronic underlying medical conditions and frequent exposure to multiple outside caregivers.

Wong, who is in her late 40s, said she was already dismayed that the state had placed people with disabilities in a priority group that came after some 16.5 million seniors, health care workers and those in other essential front-line jobs.

"This already filled me with some anxiety and dread," Wong said, "But I was holding tight. You know, just treading water. Trying to stay safe, trying to stay alive, until it's my turn."

Under the state's revised plan, she may now have to wait until millions more seniors get their shots.

"I don't understand the science and logic behind this decision, and I don't understand why people do not see us and value us," Wong said.

It's still unclear if the new age-based vaccination guidelines will allow any exceptions.

Dr. Mark Ghaly, California's Health and Human Services Agency secretary, suggested last week that could be the case when he said the new allocation formula would "reach other populations not just on age, but on exposure, to ensure that those populations are taken care of." But he didn't elaborate on what that would mean in practice, and state health officials have yet to offer further guidance.

Lack of Data

When it comes down to it, there's just nowhere near enough vaccine to go around.

Health providers in California are now administering about 125,000 doses a day, and as of Monday, had gone through a total of more than 3.4 million doses.

And while that marks a three-fold increase over just a few weeks ago, at that rate it would likely take until June to vaccinate the state’s roughly 6.6. million residents who are 65 and older, according to an estimate by state epidemiologist Dr. Erica Pan. That pace, however, could speed up significantly under President Biden's plan to purchase and distribute 200 million additional doses.

For months, advocates have been pushing hard at meetings of the state’s Community Vaccine Advisory Committee for people with disabilities to be moved up in line to receive the vaccine.

"Our message is not to make people over 65 wait. Our message is don’t make everybody else wait while you’re doing people over 65," said Andy Imparato, executive director of Disability Rights California and an advisory committee member, who spoke last week at an online town hall on the issue.

People with disabilities who are most at risk should be prioritized alongside farmworkers, teachers and people over 65, he said. "We’re not trying to supplant those other groups, we want to have access at the same time as those other groups."

But state health officials have consistently pushed back, arguing that there's little reliable data showing people with disabilities are at significantly higher risk for hospitalization or death from COVID-19. Meanwhile, the data showing risk for people over 65 is unequivocal.

“People 85 years or older have a 630 times higher death rate,” said Pan, who co-chairs the committee, at the Jan. 20 meeting. “Those over 75 years of age have a 220 times rate higher, and then 90 times higher mortality rate for 65 and up."

Officials have also been under intense pressure to speed up vaccinations across the state, prompting the opening of a number of mass vaccination sites, like the one at Dodgers Stadium in Los Angeles and the Cal Expo in Sacramento.

For this to work effectively, officials say, very simple eligibility criteria is needed. And someone's age is a lot easier to verify than a person's medical history.

"It may be more challenging in those settings for the vaccinators to be confirming a medical history if they don't have access to the medical records," said Nadine Burke Harris, the state’s surgeon general, who also co-chairs the committee.

Balancing Equity and Efficiency

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But disability advocates say the state is trading in equity in its quest for efficiency.

"Just because something might pose unique challenges, does not mean that it is not a worthy goal that we must, must, must go after,” said Alyssa Burgart, a medical ethicist at the Stanford Center for Biomedical Ethics. “We cannot abandon this population.”

While there isn't good data on the risk people with disabilities face, she said, that's because of bias in the health care system that leads researchers to ignore that community.

“If you don't have the data that you need, and then you punish that population because that data does not exist to the degree that you expected, that is just one more form of erasure of our disability community,” Burgart said.

The Centers for Disease Control and Prevention states on its COVID-19 site that "most people with disabilities are not inherently at higher risk for becoming infected with or having severe illness from COVID-19."

But it goes on to say they are three times more likely to have chronic underlying medical conditions like heart disease, stroke, diabetes or cancer, which would put them at a higher risk. The CDC also notes that some people with disabilities have conditions that prevent them from wearing masks or communicating symptoms, and that many are dependent on outside caregivers, whom they can't avoid coming into close contact with.

That's the case for Tim Jin, a disability advocate from Southern California, who also spoke at last week's town hall.

Jin, who has cerebral palsy, said six caregivers come into his house throughout the week, greatly increasing his own risk of exposure.

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Health officials, Jin said, have again "neglected to account for the needs of Californians with disabilities."

"Why would a healthy 60-something get the vaccine before me, a 45-year-old man with significant disabilities?" he said. "It’s a little ironic that the state has approved vaccines for caregivers who support people with disabilities, but has left out the people who need it the most."

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