• People with spinal muscular atrophy (SMA) and their caregivers are encouraged to talk to their health care providers about receiving COVID-19 vaccines.
• Children under the age of 16 are not eligible to receive any of the COVID-19 vaccines currently available.
• Caretakers and family members can obtain a letter making them eligible to register for the vaccines, even if they do not have preexisting conditions or meet age criteria as seniors.
• COVID-19 vaccines are not believed to interact with disease-modifying therapies for SMA.

Shortly after the U.S. Food and Drug Administration (FDA) approved the Pfizer and Moderna COVID-19 vaccines in December 2020, Cure SMA issued guidance indicating that “vaccination will be the best defense against the COVID-19 virus.” The organization urged people with SMA and their caretakers to speak with their health care teams about SARS-CoV-2 vaccine options.

Many people living with spinal muscular atrophy still have questions about the COVID-19 vaccines, so mySMAteam invited Dr. Jonathan Strober to speak with us about this topic. Dr. Strober is a specialist in childhood disorders of the nerves and muscles. He directs the Neuromuscular Clinic at the UCSF Benioff Children's Hospital.

Can you tell us anything about the newly approved third COVID-19 vaccine, manufactured by Johnson & Johnson?

It is definitely different from the first two that came out. The first two are based on something called messenger RNA, or mRNA, which is the final part of the genetic process for making proteins. The Johnson & Johnson vaccine is based on a different way of getting genetic material into cells to make a viral protein, so we can produce an immune reaction against it.

The Johnson & Johnson vaccine definitely seems to be effective. The numbers were not as good as the other two vaccines, which were about 94 percent effective in preventing any level of infection in clinical trials. But the Johnson & Johnson vaccine is still 74 percent, which is great. They all work well in preventing severe infection and hospitalizations, which are the most important things.

The vaccines are so new that there is not yet any specific data on results or side effects in people with SMA. How can we know they're safe and effective for this population?

We've always encouraged our patients with SMA to get fully vaccinated with all the vaccines that we have. It is a different type of vaccine for sure, but there's nothing in the technology that would suggest it would work differently in someone with SMA than someone without SMA.

We know that people with SMA are extremely high-risk for having severe complications and hospitalizations from COVID-19. The vaccine is just causing an immune reaction, not the symptoms and complications you can get from COVID-19. There's no reason to believe the vaccines should be a danger to anyone, or to people with SMA specifically.

The Pfizer and Moderna vaccines are both mRNA vaccines, a new type of vaccine. Do we know how mRNA vaccines might affect people taking disease-modifying therapies for SMA? For instance, could an SMA therapy prevent an mRNA vaccine from working properly, or vice versa?

For Spinraza or Evrysdi, or even Zolgensma, there's no reason to believe that the vaccine is going to interact with the medication at all. SMA therapies only interact with the specific gene that is involved in SMA.

When you initially get treated with Zolgensma, you need to go on steroids to prevent an immune reaction to the therapy. The steroids would prevent a lot of the reaction to the spike protein in the mRNA vaccines and make it less effective. However in this country, we can only give Zolgensma to kids who are less than 2 years of age, who wouldn't be eligible for the COVID-19 vaccines.

Should people with SMA try to schedule the timing of the vaccines around SMA therapy?

It is probably best to not get the vaccine soon after getting a treatment with Spinraza to make sure that if you do get side effects, you know it’s from the vaccine and not from Spinraza. It would also be best to wait at least two weeks after starting Evrysdi for the same reason.

We know that SMA is a genetic condition. Could COVID-19 vaccines based on mRNA technology interact with DNA?

The mRNA in these vaccines does not get into your genes. It actually gets degraded or broken down pretty quickly.

Is it the current recommendation that all caretakers should receive the vaccine?

Yes, all caretakers should definitely be vaccinated. All eligible people with any neuromuscular disease or any other severe disorders that can be affected by COVID-19 should be vaccinated. Like many other centers for SMA care, we have a letter that can be given to caretakers to make them eligible to join a list for vaccines, even if they don't have a preexisting condition.

Is one vaccine or the other considered safer or more effective for people with SMA?

We do not have any of that data. Both mRNA vaccines seem to be about the same efficacy for healthy people, so that's a good start. The Johnson & Johnson vaccine is almost as effective, and all have been found to be safe in healthy people. Now that people with different health conditions are starting to get vaccinated, we'll get more information about comparative safety and efficacy in different conditions.

The Pfizer vaccine is approved for people aged 16 and older, while the Moderna vaccine is approved for those 18 and up. If a child with SMA is under the age of 16, can they still get the COVID-19 vaccine?

No. Currently, you have to be at least 16 or 18, depending on the vaccine. I know Pfizer and Moderna are already looking at clinical trials of the vaccines in younger kids. But it will be a while before we get there.

The mRNA vaccines both require two doses, timed 21 days after the first for the Pfizer and 28 days later for the Moderna. Is it important to get the second dose for the vaccine to be effective?

The vaccines were studied with just two doses. It's possible that one dose may be effective, but on the other hand, if you can go from a 74 percent rate of effectiveness — which is what the data appears to show for these two vaccines after one dose — to 94 percent, I would probably go for 94 percent effectiveness. To me, that makes the most sense.

One mySMAteam member asked whether the COVID-19 vaccine could be less effective on people with SMA because it’s injected into the muscle, and many people with SMA have weaker upper arm muscles. Is there any reason for concern about muscle weakness and vaccine efficacy?

As long as you have some muscle cells there, it should not be a problem at all. And it doesn't have to be a muscle cell — any cell can actually take the mRNA and make the viral protein.

Members of mySMAteam have expressed worry about the fast-tracked development of the COVID-19 vaccines. Do you have any concerns about the speed or nature of how the vaccines were developed? And if not, why not?

I don't have any concerns at all. These are not new technologies, which is why we were able to get this done so fast. That’s the beauty of doing things genetically these days. We can use this for a lot of things.

If someone has had a bad reaction to the flu vaccine in the past, is that an indication they might have a bad reaction to the COVID-19 vaccine?

There's definitely no connection between the two. There's no reason to think that any patients who have side effects to the flu vaccine would have the same side effects with Moderna, or Pfizer, or even Johnson & Johnson.

Some mySMAteam members state they would rather delay getting a vaccine until there is more data about its safety and potential side effects. In your opinion, is there any benefit to waiting until later to get a vaccine?

The longer you wait, the higher chance you have of getting the infection. If you don’t leave your house, you trust everyone who comes in to take care of you or visits you, and you don't mind staying in that situation during the pandemic, that's one way of preventing the virus. But if you want to get out there, have people come over, and expand your bubble a little bit, the vaccine is another way to make sure your chances are almost zero of getting COVID-19.

What is the most important thing for people with SMA to know about COVID-19 vaccines, in your opinion?

The most important thing to know is that they're pretty safe. They've been given now to millions of people, and we know that they're working, and we know that they’re safe. Now that we're dealing with real-world numbers — not just the 30,000 in each trial — the risk of a significant complication seems to be very low getting the vaccine versus the known risks of getting COVID, especially if you have a health condition.

Talk With Others Who Understand

On mySMAteam, more than 800 members come together to ask questions, give advice, and share their stories with others who understand life with spinal muscular atrophy.

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