Disabled, High-Risk Californians Still In Vaccine Limbo

CALIFORNIA — It's been more than a year since Danielle Mandella has experienced the rush of endorphins that comes from hugging another person. She went into isolation in the winter of 2019, as she does every winter. But she didn't expect to still be sequestered in her Sacramento home.

Mandella, 34, has cystic fibrosis, a genetic disease that can cause persistent lung infections and damage to other organs in the body. She will remain in isolation until she gets vaccinated, given that she has seven of the 21 possible complications that would put her in a high-risk group for the coronavirus.

But she thought that day would have already come, as did the medical staff and her peers who are also considered high-risk at the treatment centers for which she risks leaving her home each week.

"January, or even around Christmas, we started getting excited, like, 'All right, we're next,'" Mandella told Patch in a phone interview. "'We're going to get the call any day.' And then it just never came in. It's just descended into a nightmare."

California's vaccine rollout was yet again turned on its head and reshuffled in late January, this time prioritizing age. This left many Californians such as Mandella feeling left in the lurch.

The state was set to transition to an age-based vaccine prioritization system after it finished inoculating its most prioritized candidates in Phases 1a and 1b Tier 2: health care workers, those 65 and older, first responders, teachers, child care staff, food workers and agriculture workers, Gov. Gavin Newsom said in late January.

Before this change, California had planned to vaccinate residents in tiers, accommodating essential workers and those with underlying medical conditions.

The change marked a huge revision to the state's vaccine rollout.

Where does this reshuffled rollout structure leave high-risk Californians? The state is working on an answer, Newsom told reporters Monday at Petco Park, one of the state's mass vaccination sites. His answer was similar to the one Dr. Mark Ghaly gave last week when asked a question about vaccinating California's at-risk population and adults with developmental disabilities.

Newsom hinted that a solution for at-risk Californians was on the horizon. "Dr. Ghaly and I made a pact to resolve this once and for all by the end of the week," he said, adding: "I just fear that whatever we do will not be enough until the supply is adequate."

Ghaly, the state's health secretary, said he was working with stakeholders to carve out a plan for people with disabilities and underlying conditions, he told reporters last week. Ultimately, he said, "the availability of vaccine is always top of mind" before the state can add "additional people onto our eligibility list."

Across the Golden State, the queue for inoculation has become the breadline of the modern day.

Some "vaccine chasers" in Los Angeles have been spotted lining up outside clinics in hopes of receiving a leftover vaccination. Many have succeeded. But younger at-risk Californians such as Mandella wouldn't even have the option of risking COVID-19 exposure to brave such lines.

"It's such an unknown if I were to catch it," Mandella said. "So that's a different kind of anxiety. I do worry about catching the flu and other bugs, but science knows how to deal with those. If I went to the hospital with [the flu], they have an idea of what to do. So this is just a great big unknown. It's a lot scarier."

Dr. Timothy Brewer, a professor of medicine in the division of infectious diseases at the David Geffen School of Medicine at UCLA and of epidemiology at the UCLA Fielding School of Public Health, addressed the state's struggle with vaccine scarcity in an interview with Patch.

"The big challenge that California and every state is grappling with is that we have much more demand for the vaccine than we have actual vaccine in hand," Brewer said. "The question is, how do you push that out as quickly as possible to those who need it the most?"

Brewer said that the transition to vaccinate by age may at least be easier to comprehend — though it may not be a perfect system.

"The tiers of 1a, 1b, 1c was just too complicated," Brewer said. "Nobody really understood when their turn was. ... So I think switching to age cutoffs makes sense, ... recognizing that there are people below the age of 65 who may be at higher risk for serious disease than some people above the age of 65."

Mandella acknowledged that the new plan may be more understandable, but said it doesn't reach everyone who would benefit the most from it.

"In Washington D.C., they have a system where there are several very specific conditions listed, and you show up, and you get a vaccine," she said. "And that's not hard to do. I mean, if they can get a stimulus check into my bank account without me giving them my bank information, I feel like they can see what I've been diagnosed with."

Last week, the Golden State made another revision to its prioritization plan. This time it added medicinal cannabis workers and workers supporting veterinary services onto some of the top tiers, Phase 1a and 1b. It remains to be seen, though, whether the changes will be reflected in vaccinations, as counties set many of their own guidelines.

Shannon Goodsell — a 53-year-old Los Angeles resident with a condition similar to chronic obstructive pulmonary disease — hasn't been to work since December after her doctor deemed her too high risk to expose herself.

Since she's a cannabis delivery driver, her employer, whom she wished to keep anonymous, informed her through a company email that she would be able to become vaccinated immediately.

Last week's change to the state's prioritization list moved her from Phase 1c to 1a. Before that, Goodsell was worried she would have to wait behind people 65 and older — even though her health could put her at a greater risk than some older Californians.

So Goodsell will head to her appointment on Feb. 19 at a local Rite Aid, where she made an appointment that she's hoping isn't too good to be true.

READ MORE: CA Vaccine Rollout: Cannabis Workers Now Eligible For Shots

Meanwhile, Mandella and many disabled and high-risk Californians who share her plight have remained secluded in their homes, doing Zoom hangouts and whatever else they can to support each other from afar.

She and hundreds of others came together on Twitter last month under the hashtag #HighRiskCA to share their stories after the state's decision to prioritize age. The tag was created by Alice Wong, a disabled activist in San Francisco.

"Age is not the only factor in determining risk," Wong said in a YouTube video on Jan. 29. "This decision by the Newsom administration is an act of violence and erasure toward groups disproportionately impacted by the pandemic."

Mandella works part-time for Cystic Fibrosis Research Inc. Like Wong, she is also vocal about disabled and high-risk Californians on Twitter. "While my resources are coming from the perspective of cystic fibrosis, we're advocating everybody for each other," Mandella said. "All disabilities and all vulnerable people are in this together."