As vaccines continue to roll out across the nation, questions about safety, efficacy and who may be eligible to receive the vaccine immediately are prominent in the ALS community. Supply and demand issues that vary state by state are exacerbating the challenges the pandemic continues to present, especially for those in the ALS community.

This week, we learned of data showing that veterans with ALS who contract COVID-19 are dying at increased rates. The ALS Association quickly accelerated its advocacy on behalf of people with ALS and their caregivers and is renewing its urgent call to the CDC to expedite access to the vaccine for people with ALS and their caregivers. In addition, chapters across the country are reaching out to governors to use their discretion and give people with ALS and their caregivers priority access to the vaccine. Finally, we’re inviting the greater ALS community to press the case further by contacting their state governors to request urgent vaccine access. 

Earlier, some of the data around COVID-19 and ALS and implications of contracting the virus were discussed on The ALS Association’s COVID-19 webinar for the ALS community. The panel featured Dr. Lou Libby, Dr. Richard Bedlack, Dr. Cherise Rohr-Allegrini, Dr. Urvi Desai and Dr. Marinella Galea, and Dr. Neil Thakur, representing physicians and epidemiologists. The webinar was moderated by ALS Association Board of Trustees member Dr. Ken Menkhaus, who is living with ALS. 

Some key takeaways from the webinar are below.
 

Do we have good data indicating whether COVID has particular or lasting impact on progression or complications with people living with ALS?
“I believe people with ALS are at an increased risk of a bad outcome from getting COVID infection. We know that having pulmonary problems or cognitive impairment increases the risk of a bad outcome from COVID and many people with ALS have these. It's really shocking to see the neuroinflammation that we now know COVID can cause. Neuroinflammation is believed to be part of the pathophysiology of ALS. And so theoretically, by ramping up neuro inflammation, a COVID infection could make the disease progress faster. Over the past year, I've had nine of my own patients get COVID infections. Two of them were doing extremely well, progressing very slowly before the infection, and both of them have had a marked acceleration of their progression during and after their COVID infection.”
- Richard Bedlack, M.D., Ph.D., MS, Director of Duke ALS Clinic and Founder of ALSUntagled.com

Why is the plan for COVID vaccination distribution seemingly so complex, especially for vulnerable populations?
“It varies from state to state and city to city. That's one of the challenges. Our system is incredibly decentralized and while that's often a good thing for public health, because we know our communities, we want to work directly with our communities. In terms of the vaccine rollout, the lack of centralization has meant that it varies so much from place to place. So, there's not one answer. It's a huge challenge everywhere.”
- Cherise Rohr-Allegrini, Ph.D., MPH, Chief Executive Officer at San Antonio AIDS Foundation

What is the current state of distribution and availability for people with ALS?
“ALS has not been put on the priority list, unfortunately. There’re other comorbidities that are as well as being over 65. So, it's quite possible that you have folks who have ALS, but have other issues such as obesity, diabetes, heart disease, and there's a few others that would put you into the priority category to start. So, if you're eligible for one of those, start with those, because you're on the list now, and don't wait for ALS. We'll work on trying to get ALS on the list.”
- Cherise Rohr-Allegrini, Ph.D., MPH, Chief Executive Officer at San Antonio AIDS Foundation

How is The ALS Association working to make sure people with ALS can access COVID vaccines as soon as possible?
“In December, our chapters sent letters to state governors reminding them that ALS is a high-risk condition. And I think part of the challenge here is there are literally thousands of diseases that could fit into the criteria, to get in that top level is very challenging. Through the staff of the national registry we were able to get ALS included under the category “It might be an increased risk for severe illness from the virus that causes COVID-19,” which is a second level layer of risk. It's not the same as the diabetes category, where we have lots of experience, but you've seen as much data as anyone has seen right now, the outcomes for people with ALS who have COVID, we just know very little.”
- Neil Thakur, Ph.D., Chief Mission Officer, The ALS Association

While the vaccines may not prevent you from getting sick, experts believe the vaccinations are critical to preventing serious disease and possible death. As more people around the country recover from COVID and become vaccinated, the numbers of cases infections are predicted to decrease dramatically, providing hope that relief from this pandemic is just around the corner. But even after people are vaccinated, experts believe there will still be a need to wear masks and practice social distancing to prevent infections as the virus will not likely be eradicated.

The webinar, “COVID-19 Vaccine Update for the ALS Community,” was recorded and can be viewed below. 

Update: Since this blog post was published, the FDA has issued an emergency use authorization (EUA) for the third vaccine for the prevention of COVID-19. The EUA allows the Johnson & Johnson COVID-19 vaccine to be distributed in the U.S for use in individuals 18 years of age and older. The Johnson & Johnson COVID-19 vaccine is administered as a single dose. Read more.