California's announcement last month that everyone age 65 and older could receive a vaccine came as a happy surprise to many, offering long-awaited safety for the elderly during a deadly pandemic. But the decision left other at-risk residents behind, leaving them feeling frustrated and invisible.
Mountain View resident Jenny Panighetti said her first response to the news was anger. Gov. Gavin Newsom's change of plans essentially canned the previous vaccine phases, meaning younger residents with disabilities and underlying health conditions will likely be skipped over for months.
Panighetti, who uses a wheelchair due to a congenital condition called arthrogryposis, said she and others are at higher risk of death from COVID-19 and have been stuck at home for close to a year now. Yet when it comes time to prioritize the vaccine, age is the only risk factor that seems to matter.
"Even though I've lived with this (disability) my whole life, I've never really felt like I was part of a disenfranchised group," she said. "But lately I have absolutely felt it."
The previous version of California's vaccine plan had numerous phases, set to prioritize health care workers and residents of nursing homes. Soon to follow was Phase 1C, which included people age 16 to 49 who have an underlying health condition or disability that increases their risk of severe COVID-19. That phase has since been erased from the state's vaccine plan web page.
The state has collected and reported sparse data on how dangerous the virus can be for people with disabilities. One report suggests that, nationwide, people with developmental disorders under the age of 70 have a 5.3% mortality rate and are three times more likely to die from COVID-19. Intellectual disabilities and mobility impairments also put people at much higher risk.
A previous study out of England suggested that people with disabilities that significantly limited day-to-day activities were 2.6 times more likely to die from COVID-19.
Leaders of the group Disability Rights California have blasted the state's decision to deprioritize those with disabilities. At a Jan. 29 press conference, Executive Director Andrew Imparato said many disabled people are sheltering in place as best they can, but are often still at risk of getting the virus from a cast of people who provide their in-home care and support. Yet at the current rate, state health officials say it will be June before people under 65 will have access to the vaccine.
"That's just unacceptable," Imparato said. "Lots of people are going to die if that happens."
Engracia Figueroa, an East Bay native and member of the group Communities Actively Living Independent and Free (CALIF), said she's been stuck in her home since March. She had a scare around Christmas time when one of her caregivers tested positive for COVID-19, and is currently down to one caregiver.
Figueroa said she has done her part and made the sacrifices, and was excited to see phase 1C had included people like herself.
"When the governor's administration changed it to people over 65, there went the glimmer of hope of survival," she said.
Advocacy groups see the decision by the Newsom administration as part of a larger pattern of bias and discrimination against people with disabilities, even in the field of health care. Dr. Alyssa Burgart, a member of the Stanford Center for Biomedical Ethics, said people with disabilities are "largely invisible" and confined to their homes, limiting their ability to be fully engaged in their lives as Californians.
The state should do everything it can to ensure each and every person with disabilities is quickly vaccinated, Burgart said, and that eligibility guidelines shouldn't be pitting high-risk groups against one another.
While California has robust data showing the correlation between age and COVID-19 mortality, the same is not true for those with disabilities, Burgart said. She believes the state has failed to collect that kind of data in a strategic way, which is used in turn as a reason not to include people with disabilities in early phases of the vaccine rollout.
"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," she said.
Panighetti, who penned an open letter to the governor last week, said she has taken on an advocacy role for the disability community since last year and worries about who will be skipped over under age-based eligibility. Young adults in their 20s are stuck at home and rely on caregivers, and could very well wait until the fall to get their vaccine.
"If you go down the list, they're going to be the last to get vaccinated," she said. "Just as other people are so excited to get their vaccine, we're getting delayed more and more even though we're at higher risk."
The exclusion of those with disabilities could change soon, however. At a Feb. 8 briefing, Newsom suggested that there would be an update on vaccines available for residents with disabilities by the end of the week, but provided no specific details. He cautioned that any near-term expansion of eligibility will feel inadequate so long as the supply of vaccine is limited.