Like many Californians, Ntombi Peters, 47, saw the slow release of the vaccine in the state with equal parts of expectation and fear. For months, the Long Beach resident believed that her turn would be the next. Then, last week, Governor Gavin Newsom announced that Californians with disabilities and chronic illnesses were losing their place in the queue.
“They act as if we don’t exist. Or, if we do, we will be expendable, ”said Peters, who uses several inhalers and medications daily to control her severe asthma and is taking immunosuppressive drugs to treat multiple sclerosis, both of which put her at serious risk for COVID-19 . “It is very disheartening.”
Like most states, California had previously planned to provide layered vaccines, with essential workers and people with certain high-risk medical conditions prioritized over healthy, low-risk adults. But this work was slower here than elsewhere. In response, Newsom abruptly reversed the course on January 25, dismissing the levels in favor of a purely age-based implementation.
Experts say this action could be a shot in the arm for the state’s slow vaccination program. But for Californians with disabilities and chronic illnesses, the decision created confusion, anguish and anger.
“Clearly, we live in a culture that still sees people like me as disposables,” said Alice Wong, 46, a disabled activist in San Francisco, who created the hashtag #HighRiskCA in response to the change. “This is clearly erasure, this is eugenics, and I consider this to be a form of violence. It is a form of violence against the most marginalized communities. “
Wong has respiratory failure and uses a ventilator to help her breathe. But, she said, many others are also at high risk for complications and even COVID’s death, whether that risk is obvious or not.
“This is a big mistake that is very dangerous,” said the activist. “You don’t have to be someone like me, a fan user, to be at high risk.”
For example, those with intellectual and developmental disabilities appear to be three times more likely to die from COVID than those without. Caregivers, including thousands of parents of children with autism and Down’s syndrome, are currently eligible to receive the vaccine in California, while adults living with these conditions are not.
“It just doesn’t make sense,” said Reid Davenport, 30, an Oakland filmmaker who suffers from cerebral palsy. “The California state government has completely neglected people who are most at risk for hospitalization and death, and I don’t understand why.”
Not even those most at risk from the virus are necessarily able to take shelter at home, as Peters, Wong and Davenport do.
“I can count the days I worked at home,” said Lillibeth Navarro, a polio survivor and executive director of Communities Actively Living Independent & Free in downtown Los Angeles, who spoke at a news conference on Thursday.
Many Californians with disabilities and chronic illnesses work in frontline occupations or live with those who do. In fact, many of the same conditions that have made COVID much more deadly in black, Latin and indigenous communities are closely linked to the conditions that make illnesses and disabilities more prevalent there.
Among the most significant is poverty.
“There is a high correlation between poverty and disability,” said Andy Imparato of Disability Rights California, who also serves on the state’s vaccine advisory committee. “If you grow up poor in a poor neighborhood, you will generally have less access to health, which can create disabilities. And if you have a disability growing up in the middle class, you’re more likely to be in poverty when you’re an adult. ”
But calculating the vaccine’s equity is more complex, experts say. So far, California has had one of the slowest launches in the country. Although the Golden State put more vaccines than any other in gross numbers, it used a smaller percentage of its available doses and vaccinated a smaller percentage of the total population than other populous states.
Everyone agrees that it is a problem of equity, since the burden of uncontrolled transmission falls disproportionately on those least able to protect themselves from the virus and those most vulnerable to its worst results. The disagreement is about whether speed or accuracy is more important.
“We talked about this as an exchange of efficiency and equity, but I think there are only issues of general effectiveness,” said Dr. Kirsten Bibbins-Domingo, epidemiologist and co-founder of the UCSF Center for Vulnerable Populations. “Age is not only efficient, it is easy for vaccination sites to confirm.”
A 26-year-old farm worker and 17-year-old grocery store clerk with Down syndrome may be at a much higher risk of infection and death than a 62-year-old corporate lawyer, but they all probably use the same California driver’s license to prove your age. Occupation can be much more complicated, and documenting disability status often requires a doctor – preferably a primary care physician – that only the lawyer is likely to have.
“There are a huge variety of types of disabilities that can put you at an increased risk of COVID,”Said Dr. Alyssa Burgart, bioethics at Stanford. “We collect age very often in all types of spaces, but we are not necessarily collecting disability status in a routine and high-fidelity way that we can use [to allocate vaccines]. ”
Still, she and others believe it must be done.
“We need to hold people accountable”, said Wong, the activist. “The government is essentially eliminating us.”