Just three weeks ago, Health Minister Adrian Dix told Aaron Waddingham that he and others with Down syndrome would be prioritized for COVID-19 vaccination in the third phase of B.C.’s rollout set to begin next month.
“The evidence shows that it makes sense to do that, and that’s why we’re doing it right now for people in congregate settings and in group homes, and we’ll be doing it early in Phase 3 for others in that community,” Dix told 18-year-old Waddingham at a livestreamed town hall.
But on March 23, the Phase 3 priority list for clinically extremely vulnerable people was released. Waddingham and many others in similar situations were not included.
Waddingham’s mother Sue Robins spent the next several days trying to figure out “how I’m supposed to tell him the minister of health lied to him.”
But after a week of online protests and a human rights complaint, the province changed the priority list Tuesday afternoon to include all people older than 16 with Down syndrome, cerebral palsy or an intellectual disability.
The initial list excluded Waddingham and many others.
His mother, Sue Robins, said the change was the bare minimum the province could have done. “It's a relief but I wouldn't call it good news.”
“The only reason they walked it back was because of public pressure from disabled people,” said Robins on Tuesday. “They put disabled people and their families through the ringer… it did not need to be drawn out like this.”
Despite the change, disabled and chronically ill British Columbians say the initial exclusion reflected the province’s failure to prioritize vulnerable people for vaccination, placing them at even greater risk as cases surge in the province.
And the province’s initial decision to limit vaccination priority to people with a narrow list of designated conditions and establish arbitrary eligibility criteria show engrained ableism that has forced disabled people to bear a heavy burden, they say.
“They created these hula hoops of fire for people to jump through in order to get their COVID vaccine,” said Robins.
The March 23 exclusion of thousands of people with Down syndrome from vaccination priority prompted Robin’s grassroots organization Ready for My Shot to launch a human rights complaint against the province.
B.C.’s initial priority list includes 12 groups of people aged 16 to 69 in Phase 3 of the vaccine rollout. They included people undergoing cancer treatment, transplant patients, people who take insulin for diabetes and those on certain immunosuppressant medications.
The province estimates about 150,000 people are considered clinically extremely vulnerable under this new guidance, including about 25,000 developmentally disabled people, according to a Ministry of Health spokesperson.
But unlike other provinces like Alberta and Ontario, B.C. originally made priority vaccination for people with “significant developmental disabilities” like Down syndrome contingent on them also accessing one of three government programs, Choice in Supports for Independent Living, Community Living BC and Nursing Support Services for youth aged 16 to 19.
People who were supported by family or others outside those programs were excluded.
“That one stuck out to me,” said chronic disease specialist Dr. Scott Lear, the chair of cardiovascular prevention research at St. Paul’s Hospital. “That seems to be raising the bar much higher than for other conditions.”
With Tuesday’s change, everyone is eligible regardless of program participation, although youth aged 16 to 18 may need a doctor’s note to confirm their diagnoses, according to a Tuesday post from the Down Syndrome Resource Foundation.
The province has said it would use program enrolment information and prescription registrations through PharmaNet to identify individuals and will mail them notices if they are eligible.
Waddingham doesn’t access any of the three programs. Although he hasn’t been to school in a year because of COVID-19 risk, he would have been in the last group to be vaccinated without Tuesday’s change. “I'm sure there's still lots of people left out,” Robins said.
Robins says that basing eligibility on program participation ignored the medical reality that Down syndrome and other developmental disabilities are not just intellectual, but often come with increased medical issues.
People with Down syndrome are five times more likely to be hospitalized with COVID-19, and 10 times as likely to die of the virus, research last October from the United Kingdom found. They are more likely to have abnormal immune responses, lung abnormalities and congenital heart disease, all risk factors for COVID-19.
There is little data collected in B.C. about the number of people with Down syndrome, let alone how many have contracted or died of COVID-19.
The programs originally required for early eligibility, like disability benefits in general, also require costly and time-consuming medical documentation. Robins estimates about 200 youth have access to Nursing Support Services. Many more either don’t require that level of support or can’t access it, but are still at risk from COVID.
Lear says the province’s initial program-based approach likely made it easy to contact eligible people, but at the cost of missing many others who may not be able to access programs, pay for their prescriptions or stay in regular touch with health-care providers. “It seems to me like a barrier that doesn’t need to be there.”
Program enrolment is still being used to determine eligibility for some people with rare conditions that could place them at similar risk to people with Down syndrome, a Health Ministry spokesperson told The Tyee in an email.
"Finding this group, beyond those with specific conditions like Down syndrome, is challenging," she wrote. "They do however, often use the programs listed."
In the BC Human Rights Tribunal complaint filed on March 18 against Dix, the Ready for My Shot campaign charged that the province’s vaccine priority list failed to accommodate disability as required by the BC Human Rights Code.
“The restriction for COVID-eligibility is discriminatory as it excludes individuals with Down syndrome who are not supported by these programs, but still have the same high risk of hospitalization and death due to COVID,” reads the complaint, submitted by Robins and her husband who founded the vaccination campaign.
The requirement to have a doctor’s note for youth under 18 to be vaccinated is also bizarre because it’s not like someone can fake having Down syndrome or another developmental disability, Robins said. “They’re causing a lot of extra anxiety and work for people to prove they’re disabled, which is just cruel.”
The health minister’s office said it can’t comment on the complaint as it is before the Human Rights Tribunal.
For disabled people with rare conditions or complex health histories, a priority vaccine is still out of reach.
Corin de Freitas is a disabled person who has Ehlers-Danlos syndrome, which affects the connective tissues that support joints and the structure of blood vessels, bones, organs and skin. He uses a wheelchair and is immunocompromised.
Last summer, when case counts were low, he did not even have outdoor picnics with friends for fear of contracting the virus. De Freitas has remained as isolated as possible for over a year now, save for regular medical appointments.
Yet his condition is not included in the 12 categories the province has deemed eligible for priority vaccination.
Only those taking specific immunosuppressive drugs are eligible, meaning people who are inherently immunocompromised by their disabilities or chronic illnesses aren’t prioritized.
“The realities of living with chronic illness and disability are always in the grey zone,” said de Freitas. “And so, when you get a really black-and-white list, like the one that the province has given, it’s going to miss the actual realities of the situation.”
The approach also excludes people who have reduced lung capacity or other medical risk factors without a formal diagnosis. “There are so many high-risk conditions that aren’t on the list, because people aren’t medical textbooks,” he added.
De Freitas’s doctor confirmed he is not currently eligible but said there may be a way for doctors to appeal for a patient to receive an early vaccine on an individual basis.
Anyone who believes they are eligible for priority vaccination but does not receive a letter by April 15 should contact the provincial vaccine booking line by phone or online to confirm their eligibility, the Health Ministry said.
"If they are not on the list, they can reach out to their physician or nurse practitioner about their eligibility," wrote the spokesperson. "The goal was to try to reach as many as possible, knowing that others could use the attestation process if, for some reason, they weren’t reached in this way."
“But if somebody doesn’t have the capacity to advocate for themselves, then they’re not going to get the vaccine,” said de Freitas. “And the vaccine really shouldn’t be dependent on your ability to advocate for yourself.”
Lear said any defined eligibility list is going to raise challenges and criticism from people who feel they should be included, an argument for making the lists as universal as possible.
“Whether the list was 12 or 112 conditions, there would still be some concerns,” said Lear.
For Jayson Stevens, diabetes was the last thing they expected to make them eligible for priority vaccinations.
Stevens experienced a stroke seven years ago and has little control of mobility in their right side, as well as reduced lung capacity. They use a wheelchair and live with one roommate in Surrey who is also disabled, acting as her primary caregiver.
But when Stevens, who feels fairly well most days, received their letter late last week saying that their insulin prescription for their diabetes made them eligible for a shot, the priority felt misplaced.
Their roommate “is very high risk, much higher than me,” said Stevens. “It seems strange I’m the only one who will be vaccinated early.”
Stevens, de Freitas and Robins all expressed concerns that healthy caregivers are receiving their shots earlier than disabled and chronically ill people simply because they are older.
The age-based rollout may have been chosen partially because it appears fair to most, said Lear, but ableism makes an age-based system unfair by default.
The life expectancy of people with Down syndrome, for example, is around 60 years compared to around 82 years for the general population. An age-based rollout inherently excludes people with Down syndrome, Robins pointed out.
The province is also running a parallel AstraZeneca vaccination campaign targeting essential workplaces where transmission and outbreaks have been high, whether due to the nature of the work or employer non-compliance with COVID rules.
Stevens says that’s based on a choice “between getting the economy going again or protecting people who are medically at risk.” The province chose the economy, they say.
Lear says that ableist notions that disabled people “are going to die anyways” have always been there but have “bubbled up on the surface” during the pandemic.
While slowing transmission in high-risk workplaces protects the most vulnerable somewhat, Lear says disabled people have a right to be concerned that they aren’t being prioritized for the protection they’re more likely to need if they become infected.
“If things got worse, triaging could be a real possibility,” said Lear, noting that ableism often influences who is prioritized for scarce life-saving care. “But having that vaccination can prevent that outcome from ever happening.”
For de Freitas, the entire pandemic response and vaccination rollout has shown them that public health and many members of the community see his death “as a forgone conclusion.”
“I have real misgivings about this pursuit of ‘normalcy’ if it comes at the cost of disabled people,” he said.
Disabled people are expected to isolate themselves even more than usual and wait for the vaccine, while employers not protecting their employees or people acting recklessly continue to put their health and safety at risk, he says.
“We see just how little our lives are valued and what people would risk our lives for,” he said. “It’s really destroyed any trust any of us had in the broader community.”
While not a remedy for the ableism he lives through, a vaccine “would allow me to imagine a future without the caveat ‘if I live to see it,’” de Freitas said.
*Story updated on March 31 at 9:49 a.m. to correct Waddingham's age and to add quotes about the decision received after deadline.
**Story updated on March 31 at 4:11 p.m. to include statements from the Ministry of Health.