Information About COVID-19 Vaccines for People with ALS

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COVID vaccine

The ALS Association continues to follow developments closely as new COVID-19 vaccines are approved and corresponding distribution plans are launched.  

We have created this web page as a hub for information updates and resources that will be updated regularly. We hope this information can inform conversations families with ALS should have with their medical teams. This is in regard to both the safety and efficacy of the vaccines and the earliest possible availability of vaccine for people living with the disease, their caregivers, and others in their household. 

We have new developments to report.
  • The Moderna vaccine has been approved for emergency authorization and distribution is anticipated to begin immediately. You can read more about it here.
  • The ALS Association is reaching out to all parties who can expedite the availability of vaccine for people living with ALS and their caregivers. This includes the CDC and governors in every state. We are also in regular communication with leaders and physicians in the ALS community for their insights and influence to prioritize people with ALS and their caregivers. 
    • As of now, there is still no guarantee that people living with ALS will receive the vaccine before the general population. It seems likely that people with ALS will receive the vaccine in the latter stages of the first phase of distribution and after frontline health care workers, people in nursing homes and long-term care facilities, and essential workers.  
    • There is no information that suggests that caregivers and household members of people with high-risk conditions such as ALS will be given priority access to a vaccine.

Nationwide Vaccine Availability

The Pfizer vaccine was approved by the U.S. Food and Drug Administration on December 11, 2020 and the Moderna vaccine was approved on December 18, 2020. Distributions are being allocated to states in quantities based on population. Each state is responsible for the distribution of vaccine to health care providers. Although each state has a degree of flexibility, all state distribution plans are informed by guidelines issued by The Centers for Disease Control and Prevention (CDC.) The guidelines suggest that the initial wave of vaccine availability will be administered in the following order of priority:

  • Frontline health care workers and adults in long term facilities
  • Essential workers
  • Adults with high risk medical conditions and adults older than 65

Even though we expect people with ALS to be given priority access to a vaccine, that access is still weeks away. In the meantime, COVID-19 infection rates continue to be high, and we urge everyone to continue following CDC guidance on social distancing, hand washing, and wearing masks.

What About People With ALS?

The CDC guidelines do not mention specific diseases (such as ALS) as high-risk medical conditions as they apply to the of distribution of vaccinations in this initial three-part phase. The ALS Association is reaching out to governors across the United States to ensure that individual state plans include people with ALS are included in the third category based on the deterioration of breathing muscles over the progression of the disease and the risks that carries for severe pulmonary complications, including COVID-19.

Is the Vaccine Safe for People Living With ALS?

We strongly advise all people living with ALS to consult with their physician to discuss taking the vaccine as soon as supplies in their states allow. The ALS Association continues to consult with ALS medical specialists nationwide and we remain encouraged by the safety and efficacy data. You can listen to our December 10, 2020 podcast interview 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. Dr. Gooch details the process of review and vetting of vaccines and discusses the vaccine in the context of an ALS diagnosis.

What Do I Need to Do Today to Prevent Exposure to COVID-19?

The current surge in COVID-19 cases across the country warrants extra attention by people with ALS and their caregivers and family members to the protocols recommended by the CDC: avoid crowds, stay at least six feet away from people who are not part of your household, wear a mask, and wash hands regularly, etc.

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Covid-19 tips

Resources

Below are additional resources you may find useful for informing your conversations and decisions with family, physicians and others. Check back frequently as we will update and add new resources as they become available.

New England Journal of Medicine: Safety and Efficacy of the BNY162b2 mRA COVID-19 Vaccine

NORD: COVID-19 Vaccine Resources

NORD: Webinar "COVID-19 Vaccines Update: FDA and CDC Leaders Address the Rare Disease Community"

The New York Times: Find Your Place in the Vaccine Line

CDC: COVID-19 Vaccination Guidance

CDC: Information on COVID-19 and tips for safety

Health Affairs Analysis: Ensuring Equitable Access To COVID-19 Vaccines In The US: Current System Challenges And Opportunities

The ALS Association: December 14, 2020 COVID-19 Vaccine Blog

The ALS Association: December 18, 2020 COVID-19 Vaccine Blog

The ALS Association: Letter to the CDC Advocating for Access to COVID-19 Vaccines for People with ALS

Connecting ALS: December 10, 2020 Podcast with Dr. Cliff Gooch

FDA: Beware of Fraudulent Coronavirus Tests, Vaccines and Treatments

FDA: Authorization for Second COVID-19 Vaccine

Updated: December 22, 2020