Many people with spinal cord injuries (SCI) have special concerns related to getting the Covid-19 vaccination. This week I spoke on a panel addressing some of those concerns. I had been invited by John Michaels, a former patient who I have known for 27 years. As is true with many with SCI, John dove into a swimming pool when he was 18, instantly becoming quadriplegic from a C6-7 injury.
John, however, showed a remarkable drive and spirit which I have only rarely seen. He completed college with degrees in sociology and psychology and now works full-time as assistant director of Resources For Independence, as well as holding other jobs. [In speaking with John again, I learned of one tangentially related problem someone with disabilities faces. John, and many other people with disabilities, receive their health benefits through Medicare and Medicaid. In Maryland (and some other states), there is a waiver (Employed Individuals with Disabilities) allowing the person to work and still receive benefits. John would like to get married. But if he does so, he will lose his health benefits, because of limits on his spousal benefits. How punitive is that irrational policy?
The panel, COVID Vaccines and People with SCI, was hosted by Independence Amplified Maryland. People with SCI submitted questions related to their concerns and hesitancy in taking the Covid-19 vaccine.
The questions generally fell into two broad areas—those about how the vaccine works and whether one can get infected from the vaccine, and those specifically related to possible vaccine side effects in people with SCI. These included:
“My body has already been through so much that I don’t want it to have to go through whatever the vaccine might cause”
A close friend of mine was hospitalized after receiving the vaccine and that scares me. Your thoughts?
What are the most common side effects in general and have you heard of any new or different side effects within the SCI community?
It all happened so fast that I don’t know if it has been tested well with people with SCI. Your thoughts?
Will the vaccine cause blood clots or breathing issues, and your thoughts with the Johnson & Johnson vaccine?”
The first speaker was Ian Ruder, Editor of New Mobility magazine. He cited a survey his group had conducted among people with SCI. Notably, of 367 responses, 72% of those who had gone ahead and received the Covid-19 vaccine had concerns about it. Only 60% said they felt they had enough info about the safety of the vax for people with their type of injury and were frustrated that there is no resource specifically for people with SCI to get that information. Some felt that they were already at higher risk of complications from the vaccine or that their bodies were less able to deal with side effect. Others were similarly concerned that there was not enough information specifically about the vaccine in people with autoimmune illnesses.
Side effects were generally comparable between people with SCI and the general population. There were two exceptions. One is that a few patients with spinal muscular atrophy (SMA) reported increased pain or weakness after vaccination.
A rare potential side effect in patients with paralysis is an autonomic dysreflexia. This can occur if an injection or other painful stimulus occurs below the level of the paralysis. Since the injection is given in the deltoid, patients with injuries below T6 (mid-thoracic area) should not have this problem. In autonomic dysreflexia, the main problem is severe high blood pressure.
Suzanne Groah, MD, MSPH, the Director of Spinal Cord Injury Research at MedStar National Rehabilitation Network, explained the vaccine development and clinical testing process. She reassured listeners that “Testing was not compromised at all…The part that was cut short (by having an Emergency Use Authorization, or EUA) was the long-term follow-up.” Otherwise, the clinical trial process was similar to that of any vaccine. “They were quality clinical trials… The gaps that we had with the EUA, we’re filling now.”
Groah also stressed some of the advantages of vaccination important to SCI patients, particularly that the impact of weakness or fatigue from a Covid-19 infection are likely to be much greater.
She has not seen autonomic dysreflexia or increased nerve pain after vaccination. Groah also stressed that the impact of long haul Covid (PASC) can also be more devastating in this population. By the time her rehab center sees patients in their clinic, patients have already seen an average of three other specialists—most often a neurologist, psychiatrist, and cardiologist.
I concluded the panel. First, I explained about how mRNA (Pfizer and Moderna) and adenovirus (Johnson and Johnson, AstraZeneca) vaccines are made. It’s important to emphasize that the mRNA vaccines don’t use live virus, nor do they interact with our DNA. Both types cause the human cells to produce the Covid-19 spike protein and teaches our cells to recognize and develop antibodies to the virus.
I big concern of people with SCI is that the vaccine will cause blood clots, which they are already predisposed to, or worsen their breathing problems.
I tried to frame the issue in terms of relative risks. For example, lightning strikes 1 in 700,000 people per year in the US (1.3/million).
The risk of blood clots from:
- DVT in SCI is 8-12%, or 100,000/million
- Smoking is 18/million
- Covid infection is 16.5 %, or 165,000/million
- BCP is 0.05-.12 % (500-1200 cases/million)
- Pregnancy is 500/million
- Post-partum is 500/million
You have to put these risks in perspective with other risks from activities of daily living in America. For example, the risk of death from gunshot is 1/100 => 10,000/million. But for black boys, the risk of death from gunshot rises to 1/40 => or 25,000/million. Risk of a black man being killed by police is 1/1000.
The death rate from a Covid-19 infection are almost 2%. Put into context, the risks of vaccination pale in comparison to other risks that we face. These vaccines have proven to be remarkably safe and efficacious. I’m relieved and thankful that I and my family have been able to receive ours, and encourage others to do so as well.
– By Judy Stone, Forbes Senior Contributor