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Information About COVID-19 Vaccines for People with ALS

 

The ALS Association Golden West Chapter 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 vaccination for people living with the disease, their caregivers, and others in their household. For the latest COVID-19 vaccination information, please visit these websites for California and for Hawaii.

 

Latest News

 
  • Visit this page to learn more about each state's vaccine distribution plan.

  • New data from U.S. Department of Veterans Affairs shows veterans with ALS are three times more likely to die of COVID-19 than veterans without ALS. The Centers For Disease Control (CDC) and governors must make the vaccine available to people with ALS and caregivers as soon as possible. We have sent a letter to the CDC requesting this update in vaccine access and our chapters across the country are delivering this message to governors now.

  • New articles from the New York Times and The Atlantic have been added to our Resources page.

  • The ALS Association hosted a COVID-19 vaccine webinar for the ALS community, with panelists Dr. Lou Libby, Dr. Richard Bedlack, Dr. Cherise Rohr-Allegrini, Dr. Urvai Desai and Dr. Marinella Galea, moderated by ALS Association Board of Trustees member Dr. Ken Menkhaus. The webinar addressed vaccine distribution and infection control issues that are specific to the concerns and interests of the ALS community. Watch here.

  • 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. The Advocacy team has also prepared a template available through Quorum for ALS advocates to reach out to your respective governor. Because vaccine access varies by state, this is an important opportunity for people living with ALS to make their concerns known to state officials.

    • -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 universal priority access to a vaccine. Allocations are being prescribed on a state-by-state basis so be sure to check to see whether or not at-home caregivers are eligible for priority vaccine access in your state.

Coronavirus-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.

--- Updated February 12, 2021.