ALS Association Working With State, Federal Officials to Make Sure ALS Community Can Access COVID-19 Vaccines

COVID research

As the approval, production and distribution of COVID-19 vaccines unfolds, The ALS Association will continue to work with the CDC and states to make sure people with ALS and their caregivers can access vaccines as they become available. Updated information and resources will be available at The ALS Association’s COVID-19 Vaccine Information hub. We urge people to continue physical distancing, wearing masks, and other infection control strategies for the foreseeable future. 

On December 11, the U.S. Food and Drug Administration (FDA) began to issue authorizations to use COVID-19 vaccines with an emergency use authorization for the Pfizer vaccine. The FDA is expected to review the Moderna vaccine the week of December 14. States and health providers have some discretion in who gets a vaccine. However, the United States likely will not have enough vaccine for even the very highest risk groups and all the front-line health workers for some time. As with all vaccines, medical personnel will be responsible for advising people, including people with ALS, about whether they should receive a COVID-19 vaccine.    

The big question is, how will the Pfizer vaccine and other vaccines be distributed? Doses will be allocated to each state according to population size. States will be responsible for distributing their allotments to health providers. While states have flexibility, they will be guided by a Centers for Disease Control and Prevention (CDC) plan, which has laid out the following: 

  • The first component of phase one distribution will provide vaccinations to about 21 million health care workers and 3 million adults who live in long-term care facilities. CDC notes these groups are at highest risk of becoming seriously ill or dying from COVID-19, and protecting them first, in turn, reduces the burden on society.  

  • The second  priority of the phase one distribution would target “essential workers”—for example, school staff, police, grocery workers, and bus drivers. 

  • In the final priority for phase one, adults of any age with high-risk medical conditions, and adults older than 65, will be vaccinated. The CDC notes that people with underlying medical conditions are at increased risk for severe COVID-19 illness, regardless of their age. Severe illness means that the person with COVID-19 may require hospitalization, intensive care, and/or a ventilator to help them breathe, or that they may even die.  

This third priority of phase one distribution does not list every disease that qualifies as a high-risk medical condition. It does not list ALS, so the Association is reaching out to each Governor to reinforce that ALS is part of this category.  

Because ALS leads to weakening of the bulbar, pulmonary muscles and diaphragm over the progression of the disease, people living with the disease are at higher risk of severe pulmonary disease and severe COVID-19; it is paramount that states factor people with ALS into their distribution plans.  

The ALS Association has been reviewing the available evidence on these vaccines with ALS specialists, and we are encouraged by the safety and efficacy data. (Listen to our recent podcast with Cliff Gooch, M.D., Chair of the University of South Florida’s Department of Neurology, and a member of The ALS Association Board of Trustees.) We recommend everyone to consult with their physician on taking the vaccine as soon as supplies allow.  

Plans at the federal and state level are contingent on the availability of the vaccine and plans to administer the vaccine will be updated regularly. State plans can be found here. 

In the meantime, it’s imperative that people living with ALS, their caregivers and individuals in their households continue to observe precautions suggested by the CDC to prevent exposure and infection. 

Check back frequently for information updates and resources on our COVID-19 Vaccine Information page. 


Submitted by: Sandra B. on Fri, 12/18/2020

I read that people who are immuno compromised should not get the COVID vaccine. I have multiple auto-immune diseases as well as ALS and did, in fact, have a severe reaction to the flu shot this year that lasted 3 days. On the way home, I blacked out behind the wheel and crashed the car. Should I avoid the COVID shot or get a driver and take it ?

Submitted by: Amy L. on Tue, 01/05/2021

Hi Sandra, we encourage everyone living with ALS to discuss the COVID-19 vaccine with their medical team.

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