‘An existential menace’: disabled and chronically unwell left behind by California’s vaccine coverage | California

Disabled and chronically ill Californians say the state’s coronavirus vaccine distribution is failing them as the death toll continues to rise in the country’s most populous state.

California abruptly announced last month that it would change its vaccination guidelines to prioritize age rather than underlying risk in deciding who to get vaccinated next. The state currently distributes vaccines to those 65 years of age and older, nursing home residents, and health, education, childcare, emergency services, agriculture, and food workers. It was originally intended to be the next to vaccinate transportation and manufacturing workers, incarcerated people, disabled people, and people with high risk medical problems.

But in January, Gavin Newsom, the governor, argued that prioritizing age would hasten the state’s delayed vaccine distribution. “It will allow us to scale much faster to get vaccines to affected communities faster,” said the governor, making it easier for officials to determine who is eligible and who is not.

Advocates for the disabled and chronically ill Californians have pushed back heavily, criticizing the change in plans as a reactionary move that has left people with a range of physical and developmental disabilities and medical conditions unsafe and confused about when their turn will be. They have urged the state to change course and re-prioritize high-risk Californians – including the disabled, workers and people in prisons.

Health officials have since signaled that they will announce a schedule this week to vaccinate some disabled Californians with disabilities, but advocates said they are ready to be disappointed. “We haven’t received clear answers,” said Andy Imparato, executive director of Disability Rights California. Imparato has attended meetings with the Community Vaccine Advisory Committee, a panel of experts and stakeholders who advise on the distribution plans.

“I know [officials] are trying to pay more attention to justice and they are bringing disabilities into these talks about justice – but I’m not sure we will get a specific timeframe anytime soon for people to get vaccines, ”Imparato said.

He added that he had a need to simplify and speed up the vaccination process, understanding that the state has few doses. “I’m just looking for simplicity and clarity – a plan,” he said.

California is one of the few states where age is a priority in vaccine distribution, a departure from the guidelines of the Centers for Disease Control and Prevention. Photo: Irfan Khan / Los Angeles Times / REX / Shutterstock

California’s policy is a departure from national guidelines from the Centers for Disease Control and Prevention, which recommends people of all ages with high-risk diseases to get vaccinated first.

For Charis Hill, 34, a Sacramento disabled activist who lives with an autoimmune disease and is taking drugs that suppress the immune system, the announcement was “further proof that disabled people are not cared for”.

“It pissed me off along with millions of other disabled people in California,” they said.

The news, which led to a year-long pandemic that discriminatory and disproportionately infected and killed disabled people, either because of their frequent exposure to nurses and health workers, or because of suppressed immune systems and other complications, rocked Hill and other advocates.

“Choosing not to prioritize disabled and high-risk people is essentially a death sentence,” Hill said.

Even before the pandemic, Hill was concerned about frequent viral infections – for her, mild flu could turn into life-threatening pneumonia. Last year, they only left their home for inevitable medical appointments. “My personal social interaction takes place almost entirely in the doctor’s office,” they said. “This is the only time I touch a person because it is medically necessary.”

More than physical isolation, Hill said they felt some sort of “social and cultural isolation because they weren’t continually excluded from the conversation and not planned for public safety and health.”

The distribution of vaccines in the US has been slow and at times stalled – in part due to the limited amount of vaccines available. As the Biden administration works to expedite the process, many residents have questioned why California is lagging behind states with fewer resources in managing its allotted doses, including Utah, Dakotas, and West Virginia.

Alice Wong, a disabled activist in San Francisco, is concerned about the consequences of the pandemic for disabled and chronically ill Californians. Photo: Talia Herman / The Guardian

In both Utah and South Dakota, some or all residents with high-risk conditions have priority over the public – and South Dakota has begun vaccinating people with high-risk diseases and disabled people living in group homes alongside the elderly. Under current California policy, disabled and chronically ill people under 65 may not get a coronavirus vaccine until summer.

Alice Wong, a San Francisco-based disabled activist who uses a ventilator and full-time home caregivers, said she was concerned about the lasting effects of the pandemic on Californians who could not leave their homes and who delayed medical care and care Treatments for fear of contracting the virus. “Not having the vaccine is an existential threat,” she said. “It is a form of violence against disabled people. It’s eugenics. “

Wong said she doesn’t understand why the Newsom government can’t deliver the vaccine efficiently and fairly, given officials have a year to plan and prepare it. “It annoys me it had to get to this point,” she said.

The governor’s office did not respond directly to a Guardian’s request for comment or to the state’s Covid-19 vaccine task force. In a press conference Monday, Newsom said the state will “care for the most vulnerable people in the community with developmental disabilities,” but added that “everything we do is by the time [vaccine] Supply is sufficient ”.

Kristen Lopez, a Los Angeles-based entertainment writer in her thirties with fragile bone disease, said the state’s initial tiered vaccine policy was far from ideal, “but at least somehow understandable. There was at least one timeline, ”said Lopez.

Her mother, Lopez’s home health care worker, was part of the first tier of care providers to qualify for the vaccine. “As she said, it doesn’t make sense that care providers can get it, but not all vulnerable people they care for are.”

“At this point,” Lopez added, “everything just seems arbitrary.”