To the full spinal muscular atrophy (SMA) community, we want you to know that Cure SMA is continuing to support you with information and resources related to the COVID-19 pandemic. The following frequently asked questions (FAQs) are designed to help address key concerns expressed by members of the SMA community about COVID-19 vaccination and provide additional information about how you can protect yourself and your family. We encourage you to refer to the Centers for Disease Control and Prevention (CDC) for the most up-to-date information, and we will update our FAQ as often as needed.

To read all Cure SMA communications and guidance to date related to the pandemic, visit the Cure SMA Coronavirus (COVID-19) Information Center. If you have any questions, please email [email protected].

Frequently Asked Questions

Last updated December 20, 2020

When do we expect a COVID-19 vaccine to be available in the U.S.?

The first COVID-19 vaccines were approved by the U.S. Food and Drug Administration (FDA) for Emergency Use Authorization on December 11, 2020 (Pfizer-BioNTech vaccine) and December 18, 2020 (Moderna vaccine). Shipments of the vaccines to states is expected to be immediate. Learn more about the latest on vaccines tracking here.

When do you believe people with SMA will be eligible to get a COVID-19 vaccine?

Approved COVID-19 vaccines will be made available to U.S. adults in phases. A federal vaccine advisory committee proposed a phased approach that started with healthcare workers and residents at long-term care facilities, and will be followed by people aged 75+ years old and essential workers. The committee is proposing adults with high-risk medical conditions be included in Phase 1c. However, the committee has not finalized its Phase 1c recommendations, including timeline and who will be considered as being high-risk. Cure SMA continues to push for priority access to COVID-19 vaccines for the SMA community, advocating directly to the committee and as part of larger healthcare and disability coalitions.

Will the COVID-19 vaccines be available and safe for my child with SMA?

Based on available clinical data, we expect the approved COVID-19 vaccines to be made available primarily to adults, either 16 or 18 years of age or older, depending on the vaccine. However, clinical trials continue to expand those recruited to participate, and therefore the groups recommended to receive the vaccines could change in the future. As of now, a COVID-19 vaccine will not be available for young children until more studies are completed.

Should I take a COVID-19 vaccine once it is available to me or my child?

Cure SMA believes that vaccination will be the best defense against the COVID-19 virus. When available to people with SMA, we recommend speaking with your healthcare provider about the best vaccine option and timing for your vaccination. Currently, a COVID-19 vaccine is not expected to be available for young children until more studies are completed (see Q3). Those with SMA who are eligible to receive the vaccine and their caregivers, should receive the approved COVID-19 vaccine to help protect those who may not be eligible to receive the vaccine at this time.

Are the COVID-19 vaccines safe?

The U.S. vaccine safety system ensures that all vaccines are as safe as possible. Based on the results from clinical trials of tens of thousands of adults, a determination is made about the efficacy and safety of the COVID-19 vaccine in the populations studied. After the FDA approves each vaccine, the federal vaccine advisory committee will review available data before making vaccine recommendations to U.S. Centers for Disease Control and Prevention (CDC).

How do I know which COVID-19 vaccine is the right one for me or my child to take?

All approved vaccines will be deemed effective and safe, and getting vaccinated to prevent COVID-19 is the number one priority. When available to people with SMA, we recommend speaking with your healthcare provider about the best vaccine option and timing for your vaccination. Currently, a COVID-19 vaccine is not expected to be available for young children until more studies are completed, so follow-up with your healthcare provider will be needed once one is available. In the interim, individuals with SMA and their families/caregivers should receive the COVID-19 vaccine when eligible.

What are the side effects of the COVID-19 vaccine?

The Pfizer-BioNTech vaccine has published the results of the COVID-19 clinical trial to date (Pollack FP et al. NEJM 2020). The most common side effects were short-term, including mild-to-moderate pain at the injection site, fatigue, and headache. Serious side effects incidence was low and was similar in both the placebo and treatment groups. Moderna also published its clinical trial data (Anderson EJ et al. NEJM 2020) and reported side effects included injection site reactions, including pain, tenderness, and swelling of the lymph nodes in the same arm of the injection, as well as swelling (hardness), and redness. General side effects included fatigue, headache, muscle pain, joint pain, chills, nausea and vomiting, and fever.

Will these vaccines interfere with receiving gene replacement therapy?

The current vaccines approved by the FDA do not interfere with any SMA treatment. Vaccines that are based on adenovirus also do not interact or interfere with the current SMA treatments. If a vaccine is based on Associated Adenovirus (AAV), there is a possibility for cross reactivity.

When I am eligible, where do I need to go to get my COVID-19 vaccination?

When a COVID-19 vaccine is available for people with SMA, we recommend speaking with and visiting your healthcare provider to be vaccinated. They know your medical history and can guide you in making decisions about which vaccine to get and timing.

What should I do to stay safe from COVID-19 while I am waiting for a vaccine to be made available?

While the current progress with vaccines for COVID-19 looks to be very positive, Cure SMA still strongly recommends that the SMA community continue the highest levels of isolation, given we are in the middle of the winter virus season and at the highest peak so far in this pandemic. At a minimum, you should cover your mouth and nose with a mask when around others, avoid close contact with people who are sick, stay 6 feet away from others, avoid crowds, and wash your hands often.

After I am vaccinated for COVID-19, will I be able to start being around people again?

Unfortunately, there is not enough information currently available to say if or when the CDC will stop recommending that people wear masks and avoid close contact with others to help prevent the spread of COVID-19. Experts need to understand more about the protection that COVID-19 vaccines provide before making that decision. If you are around people after you have been vaccinated, we still recommend diligent masking and social distancing.

Will I have to pay for the COVID-19 vaccine when I get it?

According to the CDC, vaccine doses purchased with U.S. taxpayer dollars will be given to the American people at no cost.

Check out these helpful articles about COVID-19 vaccines from the U.S. Centers for Disease Control and Prevention (CDC) and the National Institute of Allergy and Infectious Diseases (NIAID).