The Disability Community Is Being Overlooked in COVID-19 Vaccine Prioritization

Throughout this pandemic, news broke that hospitals in several states might start rationing care based on whether they deem a person’s life valuable. And the rationing of care would factor in a plethora of medical disabilities.

As this pandemic has ticked on and on, we have now seen a vaccine start to roll out and the original priority list was perfect.

Healthcare workers first. Elderly and vulnerable second.

Then everyone else by group.

The data supports this order, especially in the state of Alabama where I live. The data indicate that the two groups dying in the highest numbers have underlying heart diseases or multiple medical conditions.

This group was originally part of what they called phase 1b. This was my phase. Of course since then, we learned that I am in phase 1a because of my role as caregiver to an aging veteran who took care of me through the worst parts of my illnesses. I am still medically fragile, but I am a caregiver trying to keep a veteran out of a group home and recognized as essential by the VA along with many other family caregivers.

But my state is not clear about caregivers, either.

A Misdirection by the Centers for Disease Control From an Advisory Committee on Immunization Practices Misguidance

This is from ACIP:

Goals for Vaccination If Supplies Are Limited

ACIP set the following goals for recommending which groups should receive COVID-19 vaccines if supply is limited:

• Decrease death and serious disease as much as possible
• Preserve functioning of society
• Reduce the extra burden the disease is having on people already facing disparities

Ethical principles 

ACIP identified four ethical principles to guide their decision-making process if supply is limited:

• Maximize benefits and minimize harms — Respect and care for people using the best available data to promote public health and minimize death and severe illness.
• Mitigate health inequities — Reduce health disparities in the burden of COVID-19 disease and death, and make sure everyone has the opportunity to be as healthy as possible.
• Promote justice — Treat affected groups, populations, and communities fairly. Remove unfair, unjust, and avoidable barriers to COVID-19 vaccination.
• Promote transparency — Make a decision that is clear, understandable and open for review. Allow and seek public participation in the creation and review of the decision processes.

Noble enough goals, right?

Except that despite the actual facts and the actual data from states like mine, ACIP changed things. And tragically, while states are permitted to do their own thing, my state did not do its own thing. Instead, it ignored the data and followed ACIP.

Now, all the phase 1b got shifted into a new phase, 1c, which now places the most medically vulnerable patients that are dying in the highest numbers after a huge chunk of people that were in phases 2, 3, and 4.

Let’s look at ACIP’s own words again and break this down. 

Goals for Vaccination If Supplies Are Limited

ACIP set the following goals for recommending which groups should receive COVID-19 vaccines if supply is limited:

• Decrease death and serious disease as much as possible

This seems a very good goal. But in shifting those who are in the populations that are dying at higher rates down the priority list, how do you expect to achieve this?

In Alabama, the three most identified groups of people dying have cardiovascular issues, multiple medical issues or diabetes. So if your goal is to decrease death and serious disease as much as possible, how does it make sense to move people with these conditions further down the priority list?

Instead of adhering to its original plan, the Alabama Department of Public Health instead posted a link to programs and tips to try to “help” people lose weight.

This makes this article about COVID-19 stigma all the more painful.

• Preserve functioning of society

OK, this is fine, but under the original plan, there are people who would have been categorically able to be vaccinated sooner than later anyway. And do they not realize that medically vulnerable people spend the money needed to keep society functioning?

• Reduce the extra burden the disease is having on people already facing disparities

This again is a noble goal, but how is it being achieved?

We have seen so many stories about proposed and actual rationing of COVID-19 medical treatments, including ventilators and ICU beds, that discriminates against people with disabilities — especially older adults and people with intellectual disabilities.

Hospital surges have also affected “elective” procedures, including chest ports for cancer and immunodeficiency patients. Sure, they could continue to try to use the arm veins for infusions and chemo, but generally, when we are referred for chest ports, our peripheral veins are no longer usable due to inflammation or infection. So chest ports might technically be elective procedures, but for many patients like me, they are essential for treatments.

At any rate, if the goal is to “reduce the extra burden the disease is having on people already facing disparities,” how does bumping them down the vaccination priority list achieve that?

Ethical principles

ACIP identified four ethical principles to guide their decision-making process if supply is limited:

• Maximize benefits and minimize harms — Respect and care for people using the best available data to promote public health and minimize death and severe illness.

Again, a noble principle, but let’s revisit the question: how does bumping a group of vulnerable people that has the highest number of deaths achieve this?

• Mitigate health inequities — Reduce health disparities in the burden of COVID-19 disease and death, and make sure everyone has the opportunity to be as healthy as possible.

See the section above about disparities and ask again, how does bumping those people down achieve this?

• Promote justice — Treat affected groups, populations, and communities fairly. Remove unfair, unjust, and avoidable barriers to COVID-19 vaccination.

The new guidelines did not do this. If anything, the new guidelines created more unfair, more unjust, and more avoidable barriers.

• Promote transparency — Make a decision that is clear, understandable, and open for review. Allow and seek public participation in the creation and review of the decision processes.

Again, I don’t find them as being very open for this.

Another Note About the ACIP Misguidance

In the end, ACIP prioritized some 87 million people who are healthy enough to work during this pandemic over millions of people with medical disabilities.

I find it worth noting that the majority of those with medical disabilities are also Medicaid beneficiaries. And we all know that the American government tends to be more hostile to people on safety net programs.

Why is that every time I turn around, my government is trying to kill me?

Before the ACA, it was being denied suitable coverage for healthcare. Since the ACA, it has been attacks on a law that enables me to have suitable coverage for my care.

Since the pandemic, it is now policies that would allow a hospital to decide my life is not worth saving even though I am stable on my treatments and could live to be 100 years old like many of my ancestors and relatives did.

And now since the vaccine to end this pandemic has become a reality, my government wants to bump people like me down the priority list because we are not money makers to them.

I have seen some people say they are OK with the decision because they can stay home. But I cannot just stay home. I am a medically vulnerable person that has to go to in-person appointments for lifesaving treatments I need. And now I am also a caregiver for an aging disabled veteran, and I have to handle human waste.

If she gets exposed at her appointments, I can die. And then where would that leave her?

This brings us to another issue.

Where Do Caregivers Belong? 

There is speculation that caregivers are phase 1a. Caregivers were definitely in the original phase 1b. But with little to no instruction being given to the doctors to help people arrange appointments for vaccines, there is little to nothing about what the process is for caregivers like me.

If you are a caregiver that works for an agency, you will likely be contacted by your agency. But the family caregivers that are deemed essential do not have that same advantage.

The VA has been expanding its family caregiver program in the midst of the pandemic as they recognize that family caregivers are essential to being able to keep veterans in their own homes instead of sending them to nursing homes where they are having high rates of deaths. But even the VA has no real plan in place to make sure caregivers are vaccinated.

And what about the caregivers of people who are living in their communities? These caregivers are also essential to keeping disabled people out of group homes and nursing homes.

Our country has had months to work on these priority lists and to decide whether the data will drive their decisions or whether lobbyists would drive their decisions.

Regardless of what happens next, and I sincerely hope that we have advocates that can turn this misguided ship around before we lose any more lives, there is one simple thing everyone can do in the meantime while we all try to figure this mess out:

Wear a mask.