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Monday, September 27, 2021

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News + PoliticsCOVIDThe urgency of vaccines for people with disabilities

The urgency of vaccines for people with disabilities

An open letter to the mayor and the supervisors.


Dear Mayor Breed, Board President Walton and Supervisors:

First, credit where credit is due. Mayor Breed, you and the Department of Public Health have made some smart, prudent decisions about lockdowns, and about closing and reopening businesses, functions, and activities. You’ve implemented a strong mask policy. These actions have saved lives and reduced serious illness. San Francisco COVID death rate is low for a city of its size. Thank you.

I’m writing, unfortunately, about something not so good. Unconscionable, in fact.

San Francisco’s COVID vaccination policy prioritizes healthy, able-bodied people 65 and older over high-risk individuals below age 65, including individuals below 65 with major disabilities and health conditions. This policy is based on guidance from the State of California and the CDC.

This policy means that people younger than 65 with muscular dystrophy, spinal muscular atrophy, Down syndrome, primary progressive multiple sclerosis, other autoimmune diseases, Huntington disease, Parkinson’s disease, cystic fibrosis, sickle cell disease, Gaucher disease, and others at high risk of contracting COVID and at high risk of severe illness or death if they do contract it, will have to wait longer — and depending upon vaccine supply, often far longer — to be vaccinated than healthy, able-bodied people 65 and older who have no significant medical conditions.

The policy also does not take caregivers into account, which is wrong both for the caregivers themselves and for individuals who rely on them.

The evidence cited by the CDC Advisory Committee on Immunization Practices on which the CDC COVID vaccination guidelines are based doesn’t include studies or information on these and similar medical conditions.

I’m 63, have facioscapulohumeral muscular dystrophy, cannot walk at all, and use a power wheelchair full time. I rely on my wife and caregivers for virtually all activities of daily living. Because of my FSHD, I have respiratory insufficiency. I’ve used a BiPAP breathing machine all night, every night for more than 20 years. I’m at high risk of serious illness or death if I were to get the virus. My risk is certainly greater than that of a healthy, able-bodied 65-year-old, or even a healthy, able-bodied 75-year-old.

I have three superb caregivers. One of them has taken a job at a skilled nursing facility; tomorrow is his last day with me. He’d like to continue working for me when his schedule permits, and I’d like that, but it would be too risky for me and my wife unless we are vaccinated. Another caregiver availability is limited and may be changing.

Because of COVID, there would be a significant risk in interviewing and hiring new caregivers. If both my wife and I were vaccinated, my caregiver who will be working at the nursing facility would be able to continue working with me when his schedule permits, and I would be able to interview and hire one or more additional caregivers. Until my wife and I are vaccinated, the burden on her and my caregivers will increase significantly. If she, one of my caregivers or I got COVID, the situation would be dire indeed.

Yet when my wife and I signed up on San Francisco’s vaccination website, we were both assigned to Phase 1c.

Until very recently lawyers (the vast majority of whom are working from home) were assigned to Phase 1b, which meant that a 25-year-old healthy, able-bodied lawyer had a higher priority than a 25-year-old with a neuromuscular or other disease whose condition was so severe that he or she was on ventilation 24/7. I have nothing against lawyers – I’m a retired lawyer myself — but that policy was clearly wrong and unfair. There were other categories of employment with a low risk of contracting COVID that were recently removed from Phase 1b. How many precious doses of the vaccine were used to vaccinate people at low risk before these categories were removed?

San Francisco must immediately change its policy to very highly prioritize:

  • People of any age with specified chronic medical conditions, including but not limited to ALS, Duchenne muscular dystrophy, Huntington disease, sickle cell disease, cystic fibrosis, and Down syndrome. People of any age with other specified chronic medical conditions should be placed in this category if they can demonstrate by compelling medical evidence that they are at great risk of severe health consequences, including death, if they contract the virus. 
  • Disabled people of any age who rely on caregivers coming to their home for assistance with activities of daily living.
  • Caregivers of any age, regardless of whether they are from government agencies or programs, private agencies, hired directly by disabled clients, or are family members of the individual for whom they are caring. 

Not only is prioritization by phase essential, but there must be actual vaccines allocated to people in these categories. The more that the phases that are opened up based solely on lower ages, the more difficult it will be for these people to find vaccines. A remedy without adequate resources isn’t much of a remedy.

The vaccination system is a Darwinian free-for-all, with each individual for themself and each medical institution for its self.

It is difficult to express in polite language, and impossible to overstate, how unjust the current policy is and how urgent it is that San Francisco change its policy.

Howard Chabner is a disability-rights activist and retired lawyer.

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  1. With covid you have to factor in the issue of how likely a person is to spread it to the community, in which case prisoners should be the first in line. Yet they are not in line in any state I have heard of. One prisoner and one nursing home worker can easily infect an entire community by walking around or going to a grocery store.

  2. It’s really not quite Darwinian but more disorganized. One of the reasons Biden won is because Trump did such a lousy job with organization and logistics for testing/treatment and vaccination. Its not so easy from a logistical standpoint to vaccinate 300+ million people when you have to wait for 1/2 hour after receiving your first dose in case there is a bad reaction. Biden says he is going to set up federal vaccination sites for the entire population so most people will have to wait a couple of months.

    If you look at the probability of death as the main criteria there will always be inequities. An 85 year old person in a nursing home has a high probability of death from covid. On the other hand how many years of life does this person have left? Shouldn’t a 45 year old with high risk factors receive the vaccine first? Should people with dependents at risk of becoming orphans get the vaccine? Who gets the kidneys and hearts when there are long waiting lines for human organs? There are many different criteria used for these decisions, and they are never fair to the ones on the losing end. At the height of the crisis in Italy the hospitals stopped taking people over 60 to give the younger ones a chance at survival. Is it really ethical to intubate an 80 year old when someone 40 needs the machine?

    Fortunately in the US everyone who wants to will get vaccinated but for most people its going to be a wait because of the fundamental poor health care infrastructure which has been falling apart for years. It can be fixed in a couple of weeks. Its a wake up call to Americans – think about it – for $10,000 per year per person in health care costs why did we have the highest death rate in the world? Where is the other $5000 per year going? Canada, the UK, Australia and most of Europe and South America spend half as much on health care and people in these countries live longer.

  3. Howard

    Thank you for your considered, detailed and informative post. I agree with all your points and am commenting simply to add flavor and detail. I am a partial paraplegic and below elbow amputee.

    Reading your post, I note that I have no idea what Phase 1b and 1c refer to. Did you consider adding links to their definitions?

    I moved into a continuing care facility in August 2020. Even though I was 73, I was vaccinated – second vaccine was last Monday.

    Why was I vaccinated so early?? I think it was because I live with the elderly and because the elderly I live with are monitored by municipality, count, state and government statutory guidances.

    You say

    > The vaccination system is a Darwinian free-for-all, with each individual for themself and each medical institution for itself.

    In other words, we may live in the home of the brave and the land of the free, but it’s the organized peeps that are vaccinated first.

    I chose to associate myself with the disabled and with elders in a visible, registered, licensed manner. Lo and behold, I was taken care of first.


    This is a complicated topic. If you wish to continue, let’s start a dialogue somewhere…

  4. Mr. Chabiner, you summed it all up when you said that right now “the vaccination system is a Darwinian free-for-all.” I am over 65, less than 75, no medical problems, and supposedly eligible for the vaccine, but that don’t mean a thing if you ain’t got the right juice,

    Bad as it is here in the good ole USA, if you lived in one of the poorer 150 countries or so on the globe, as distinct from the richer 50 or so, your chances of getting vaccinated anytime this year would probably be slim to none.

    And a question being asked is whether or not the current situation might render the vaccine drives in the richer countries futile in the absence of similar efforts everywhere else, as the virus runs wild, mutates and then comes back to bite us in the belly of the beast.

    But, don’t worry, because you can get a hamburger now on Valencia Street.

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