High-Risk CA Residents May Be Eligible for COVID-19 Vaccine

New updates on California’s vaccination distribution plan and the continuous push to prioritize high-risk residents by disabled advocates and allies

Update (2/17): Read the Joint Letter to the Community Vaccine Advisory Committee, CA Department of Health, organized by the Disability Justice League-Bay Area

On February 11, 2021, the California Department of Public Health (CDPH) updated their guidelines on allocating COVID-19 vaccines to include high-risk individuals. Starting on March 15, healthcare providers “may use their clinical judgment” to vaccinate 16 to 64-year-old individuals at the highest risk of complications or death from COVID-19 who have at least one of the “severe health conditions” or a “developmental or other severe high-risk disability” listed on CDPH’s provider bulletin

These severe health conditions include cancer, chronic kidney disease (stage 4 or above), oxygen-dependent chronic pulmonary disease, down syndrome, weakened immune system due to organ transplant, pregnancy, sickle cell disease, certain heart conditions, severe obesity and type 2 diabetes.  

CDPH defines having a “developmental or other severe high-risk disability” as being either likely to become extremely ill or die due to COVID-19, unable to receive vital care or services due to COVID-19 and/or unable to get on-time and adequate COVID-19 care otherwise due to a disability. 

This update would increase the number of individuals vaccinated between 4 million and 6 million people aged 16 to 64-years-old, bringing the total number of California residents eligible for the vaccine to 17 to 19 million by March 15. 

The pushback that led to updated vaccination guidelines for March 15

These revisions in the vaccine rollout plan stem from immense pushback from disabled citizens and advocates after Governor Gavin Newsom announced on January 25 that California would be switching from a plan that prioritized both healthcare workers and “people at increased risk for severe illness or death from COVID-19” in Phase 1 to an age-based vaccination eligibility framework. In the press release, Governor Newsom’s office stated that the change in vaccine distribution would be “simplifying and standardizing” the process, even though this new plan would leave out younger disabled individuals who are at higher risk of getting COVID-19. 

The collective response from disabled communities and leaders was swift. 

Disability Rights California holds press conferences highlighting disabled perspectives

On January 28, a press conference featuring disabled and non-disabled experts on their concerns with the age-based framework was held by Disability Rights California, a non-profit legal organization advocating for disability rights and a member of the Community Vaccine Advisory Committee (a committee that gives feedback and input to the “planning efforts” and resolves “barriers to equitable vaccine implementation and decision-making”) since its creation in late November.  

In the conference, Alice Wong, founder and director of the Disability Visibility Project, called the switch in plans an “act of violence and erasure toward groups disproportionately impacted by the pandemic.” Engracia Figueroa from Communities Actively Living Independent and Free, an advocacy non-profit and independent living center serving disabled communities in Los Angeles County, spoke candidly on how necessary it is to frame the de-prioritization of disabled individuals from the plan as a human rights issue. “We’ve stayed home since March,” she remarked. “All we’re asking—and we shouldn’t have to ask—is that we at least be seen for the sacrifice that we’ve given as well and that we’re just given our same regular spot of [Phase] 1c. That we are included in the right to live.”

Elena Escalera, PhD., and founder of the #NoBodyIsDisposable coalition, underscored the urgent and life-threatening consequences of being unable to receive basic healthcare due to the de-prioritization of disabled people in Governor Newsom’s new plan. “As I’m waiting for medical care, I’m becoming more and possibly permanently disabled to the point where I can’t even stand,” she said, talking about being unable to even straighten her leg enough to get the CT scan necessary for her prosthetic. “I can’t get in to get my surgery…because I can’t get vaccinated.” 

As someone who has multiple marginalized identities, Escalera noted the cruel irony in qualifying for the vaccine not as “a member of fat, disabled BIPOC communities” but as a teacher—one of the sub-groups prioritized in Phase 1B of the current vaccination rollout plan—even though she’s “teaching online this semester.” Fat people and people with certain medical conditions like diabetes, she said, are the “first to be blamed for COVID vulnerability but then last for vaccines.” 

Speakers Sondra Solovay, J.D., and Alyssa Burgart, M.D., M.A., a clinical pediatric anesthesiologist, bioethicist and professor at Stanford University, clarified the importance of not “pitting one high-risk group against another high-risk group.” As Solovay put it, “everyone who is high-risk for whatever reason needs access.” 

When asked what she thought about the state’s claim that there were ample data showing that “people over 75 and over 85 are more likely to die from COVID” and not enough data on the experiences of “people under 65 with disabilities,” Burgart argued that this was actually a symptom of the larger, systemic issue of ableism in healthcare. The system’s bias against disabled people means that “we don’t even collect data necessarily in a strategic way to ensure that we actually have that information,” she said. “You don’t have the data that you need…then you punish that population because…that data does not exist to the degree you expected [and] that’s just one more form of erasure of our disability community.” 

There is growing evidence that those with developmental and intellectual disabilities are “at least a three-fold risk” compared to other disabled individuals, she continued. “Unfortunately, some of that data won’t be apparent until after we can get folks vaccinated, and that is not a good reason to de-prioritize folks with disabilities.” 

For Governor Newsom’s vaccination rollout plan to truly fulfill its promise of “achieving equity,” speakers argued, it has to include multiple ways of vaccinating high-risk individuals, such as creating a “mobile, traveling vaccine” that would reach disabled Californians in rural areas and others who are confined and immunocompromised, unable to travel to big vaccination locations.

Two weeks after the first conference and a few days after Governor Newsom publicly acknowledged the pushback against his plan from disabled communities and activists and promised to “figure this out,” Disability Rights California held a second press conference calling on Governor Newsom to “prioritize people with disabilities and high-risk health conditions,” this time featuring individuals who lost loved ones at high-risk to COVID-19. 

Burgart also spoke at this conference, calling once again for the state to “do everything it can to prioritize all high-risk Californians,” not just “folks who might be included in the CDC guidelines.” Arguing against defining disability and determining eligibility through categories, she emphasized that vaccination eligibility for disabled individuals “should not be limited by the CDC list.” If someone is at high-risk based on information “by their community,” by updated data, or “by their healthcare provider,” she stated, the vaccination rollout needs to include them “regardless of their age.” 

Burgart also mentioned that the de-prioritization of disabled individuals in receiving the vaccine causes them to be at risk of “systemic discrimination when they appear at hospitals for treatment,” especially at hospitals that lack adequate resources to care for the large surge in COVID-19 patients. She attributed both the de-prioritization and discrimination to the inherent ableism present in healthcare and society as a whole. 

Not only does ableism disproportionately impact individuals like Escalera who identify not only as disabled but also Black, Indigenous and/or a Person of Color (BIPOC) and/or low-income, but ableist, racist and classist structures all interact to make low-income BIPOC more likely to become disabled. “People of color who lack access to healthcare will have more comorbidities,” or two or more health conditions or disabilities, Burgart said, and “people don’t realize that disability spans across multiple identities including race.” Ableism is a public health issue and combating ableism is crucial in improving health equity. 

“There’s also a sense that disabled people are seen as socially less valuable,” Burgart said in a phone interview. In pushing for re-prioritization and inclusion of individuals with all kinds of disabilities and needs, “we want to preserve inherent human dignity,” she insisted. “We have to make sure we’re not devaluing them in any way.”

Burgart was incredibly cognizant of the inherent power and privilege she and other physicians hold as people with “the power to diagnose.” “There’s always room to improve,” she said determinedly.

Disabled individuals protest using hashtags such as #HighRiskCA and #NoBodyIsDisposable

Outside of press conferences like these, much of the activism and efforts to push the state to prioritize disabled, high-risk Californians has been through social media. Immediately after Governor Newsom’s announcement on the switch in plans, disabled residents, advocates and allies launched a huge social media campaign using the hashtags #HighRiskCA and #NoBodyIsDisposable protesting the age-only based vaccine distribution.

Users such as @Morgan_Coburn tweeted, “I was lucky enough to get my first dose because I work in a lab no thanks to my diabetes & 3-4 fold risk of severe COVID,” echoing the similar sentiment expressed by Escelera in Disability Rights California’s first press conference. User @queer_spice tweeted out a call to other disabled Twitter users to contact Governor Newsom’s office and state assembly members and senators and give testimonies about their COVID-19 experiences. 

On January 31, only three days after the first press conference, Burgart herself tweeted out a call for public health experts and healthcare workers to sign an open letter to CDPH co-written with Disability Rights California and Disability Rights Education and Defense Fund (DREDF), another original member of the Community Vaccine Advisory Committee representing disabled voices. The letter was addressed to Dr. Tomás Aragón, Director and State Public Health Officer of CDPH; Dr. Erica Pan, Deputy Director of the Center for Infectious Diseases and state epidemiologist; Dr. Nadine Burke-Harris, Surgeon General of California and Dr. Mark Ghaly, Secretary of Health and Human Services. 

Within the letter, Burgart, Disability California Rights, DREDF and hundreds of other signatories called for the vaccine proposal to include disabled individuals who “receive long-term services” through different programs regardless of age and provide a “safety valve” for all individuals with high-risk conditions and disabilities. In the phone interview, Burgart defined the safety valve as a “safe path” that ensured that those who don’t “clearly fit into one disability category” would still be prioritized. “This is what it means to not treat disabled residents as disposable,” she said.  

By February 2, over 400 people had signed the letter. This letter likely helped influence the recent update re-prioritizing individuals in high-risk with certain conditions in the vaccination rollout, even if this prioritization begins a month later. It also likely pushed Governor Newsom to finally publicly acknowledge and confront the backlash.

Governor Newsom addresses disabled communities’ concerns

Last Friday in San Francisco at the Moscone Center, a major vaccination site that very recently announced it would pause vaccinations due to limited supply, Governor Newsom spoke about how his office would be “advancing [their] efforts to be more inclusive to those with disabilities.”

“I want the disability community to know we’ve heard you and we’re going to do more and better to provide access even with the scarcity… [to] 16 to 64 [year olds],” he announced. “We recognize those with IDD and…physical [and] intellectual disabilities [are] uniquely vulnerable.” The phrase “IDD” refers to intellectual and developmental disabilities. 

“We will be announcing more formally what we anticipate over the next 30 days,” he continued, “in terms of achieving some results and making sure that we’re prioritizing and allowing access for the special needs of our community leaders with IDDs.” 

The re-prioritization of high-risk disabled Californians is not drastic enough

While high-risk Californians are re-listed as a priority in the vaccine rollout, not everyone feels satisfied. Many also have issues with the updated plan’s narrow categories, requirement of medical proof and relative tardiness.

Policy Director of Asian Pacific Environmental Network (APEN) Sylvia Chi tweeted, “As someone [below the age of 65] with poorly-controlled hypertension, I’d like to know why California is excluding hypertension as a condition eligible for vaccine prioritization and how racial equity concerns were considered in making this decision.” 

San Francisco Senior and Disability Action (SDA) tweeted, “We need a vaccine NOW for ALL #HighRisk CA, without a doctor’s note. Then poor disabled ppl, BIPOC, unhoused ppl will have won.” 

Alice Wong commented on Twitter that “there are still many people left off [the] list that are #HighRiskCA” and that “it seems like the burden will be on the individual” to get approval from their physician if they have one rather than the state healthcare system. “It *is* something and I’m still processing everything,” she tweeted, “but it doesn’t feel like a win for ALL of us.” 

Charis Hill, leader of the #HighRiskCOVID19 and #BeingDisabledDoesDefineMe campaigns, pointed out on Twitter how the March 15th date is merely “15 days before it’s expected that anyone may be eligible for vaccines across the USA.” “I’m high-risk, but not high-risk enough?” they asked. “A month more of waiting is a month more of disabled people unnecessarily dying.” 

At the time of publication, Governor Newsom has yet to make a public comment addressing these concerns regarding the updated vaccination rollout plan. 

Continuing the conversation on ableism, bioethics and eugenics beyond the COVID-19 pandemic

COVID-19 has only further exacerbated deeply-rooted health disparities and the societal conversation on ableism, bioethics and eugenics must extend beyond the scope of the pandemic. News about the creation of a COVID-19 Health Equity Task Force under the Biden-Harris administration clash with the implementation of ableist policies like Newsom’s age-based vaccination rollout plan that forces disabled individuals like Alice Wong to advocate for themselves and mobilize disabled and abled communities and with headlines highlighting COVID-19-motivated discrimination against disabled individuals. 

Even the language used by Governor Newsom and his administration calls for concern. The clause in the March 15 update allowing clinicians to “use their clinical judgment” raises concerns of doctors’ internalized ableism and bias towards disabled people and people of color. In a study published by Medical Education, researchers found that “health professionals are unconscious bearers of implicit social biases” such as perceiving disabled individuals as incompetent and helpless. These biases “affect the quality of professional interventions” regardless of physicians’ “intentions, personal goals and normative expectations.” Basing the dire need for vaccinations on the inherently biased clinical judgements of doctors will not ensure that high risk individuals aged 16 to 64-years-old who need the vaccine have access to life-saving health services. 

Additionally, in his announcement last Friday, Governor Newsom labeled the prioritization of vaccines and healthcare services to disabled Californians as “special needs,” indicating how deeply embedded ableism is in the language we use that shapes discussions surrounding disability and accessibility. A study conducted in 2016 concluded that using the phrase “special needs” to describe disabled individuals actually caused study participants to perceive them more negatively, and the researchers recommended against using “special needs,” predicting that the phrase would likely “become a slur” if it hadn’t already. 

Two things are clear. First, discussions surrounding societally-embedded ableism, bioethics and eugenics must continue long after the COVID-19 pandemic subsides. Second, the movement to  structurally combat ableism with policies to improve health equity should not only include disabled perspectives but also be led by disabled individuals themselves. 

If the community-driven campaigns using hashtags like #HighRiskCA and press conferences run by disability rights and advocacy organizations have shown non-disabled individuals anything, it’s that disabled individuals and communities know their needs best. 

Additional notes and resources

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