This information is sponsored by Christopher & Dana Reeve Foundation National Paralysis Resource Center 2020 COVID-19: Addressing Social Isolation Quality of Life Grant
Last updated 10/12/2021 5:30pm
GENERAL COVID-19 CONSIDERATIONS
COVID-19 is a disease that is caused by the SARS-CoV-2 (“Coronavirus”) virus. The Miami Project to Cure Paralysis is dedicated to the specific mission of serving persons living with paralysis primarily due to spinal cord injury or disease (SCI/D). As such, this page is not intended to provide over-arching information on the COVID-19 situation broadly. We defer you to other sources for this general information. However, in doing so we acknowledge that there is a vast range of existing content on this topic. Due to the potentially overwhelming nature of the information landscape, we advise relying on authoritative sources such as government entities and long-standing societies/organizations that have a proven track-record of faithful expertise.
Some examples include:
- United States Centers for Disease Control (CDC) COVID-19 Homepage
- American Association for the Advancement of Science (AAAS) COVID-19 Newsroom
SPECIFIC CONSIDERATIONS FOR COVID-19 IN PERSONS WITH SPINAL CORD INJURY AND/OR DISEASE (SCI/D)
There are many SCI/D-specific considerations for COVID-19 due both to effects of paralysis on the body’s internal functions, and the resulting interpersonal and social affordances of living with such a condition. We find it useful to divide the considerations regarding COVID-19 into three categories: transmission (risk of being infected with the virus), disease (risk of become sick due to the virus), and moving forward (managing the risk in the context of your life). Note that vaccination is covered separately below.
At the onset of the pandemic our clinical researchers consulted each other and our SCI/D community and constructed a robust resource page and infographic pertaining to the topic of the transmission of COVID-19 (can other communicable disease) in persons with SCI/D. We invite you to visit that page that covers topics relevant for spread such as: distancing constraints due to mandatory assistance/care, extra cleaning due to use of adaptive equipment, potential routes of transmission due to self-care (such as bowl/bladder) routines, and more.
The North American Spinal Cord Injury Consortium (NASCIC) recently (in September 2021) provided the world with an evidence-based “white paper” on COVID-19 in persons with SCI/D. This is the premier one-stop resource on the evidence on this topic.
In summary, the existing evidence-base shows that SCI/D does not necessarily lead to worse COVID-19 disease (in terms of symptoms or mortality) than the rest of the population. Evidence provides a firm basis for action. However, due to practical constraints there is not always an evidence-base for all topics. In such cases, plausible and rational consideration can be used to guide decisions. It should be noted that at the onset of the COVID-19 pandemic many SCI/D medical professionals were anticipating worse disease outcomes than has been demonstrated by the evidence. This anticipation was due to SCI/D-specific considerations. There were many considerations, but the primary two were: First, respiratory complication was already (before COVID-19) a leading cause of death in persons living with chronic SCI/D. The Coronavirus is a “respiratory virus”, meaning it first makes its home in the lungs, so the pre-existing respiratory compromise might have worsened COVID-19 outcomes. And second, SCI/D is known to slow the immune system due to a phenomenon known as “central nervous system injury-induced immunodepression (CIDS)”. The immune system is involved in defending against initial infection later response to the disease, so a weakened immune system might have worsened COVID-19 outcomes. Many in the SCI/D community have been relieved that the outcomes have been more favorable than expected. However, at this time it is not possible to determine if the more-favorable outcomes have been due to the actual characteristics of COVID-19 in persons with SCI/D, or if differences in behavior (e.g., marking, voluntary lockdown, increased hygiene) and access to medical care are driving the observed outcomes. For example, persons with SCI/D are generally more health-conscious and thus might have made greater behavior modifications than the rest of the population.
We are all a different place regarding the COVID-19 situation, and we sincerely hope that your response to the situation is able to be based on your comfort level. The North American Spinal Cord Injury Consortium (NASCIC) has provided the world with a fantastic 10-part video series called “SCI: Moving Forward – A Response to COVID-19” . This wonderful series focuses on topics related to COVID-19—such as telemedicine, advocacy, health, and wellness—from the perspective of the SCI community. We direct you to this amazing series and find it as fruitful as we have.
If your decision keeps you primarily online, consider joining one of our virtual exercise sessions or participating our “Miami Project Remote Exposure to Neurotrauma Research Program”.
If you are interested in learning about ongoing research studies at The Miami Project or have any further questions, reach out to our Office of Education and Outreach.
GENERAL COVID-19 VACCINATION CONSIDERATIONS
Vaccination is the primary management strategy for COVID-19, and currently vaccination recommendations from the United States Centers for Disease Control (CDC) are similar for persons with SCI/D as the rest of the population. As stated above, this page is not intended to provide over-arching information on COVID-19 vaccination broadly. For general vaccine information we defer you to the aforementioned authorities. However we find it important to point out that COVID-19 Vaccines are free to the public, and you can use a Federal vaccine locator to schedule “your shot” . We also invite you to join an American Society for Virology (ASV) online interactive COVID-19 townhall where you can virtually engage and questions virologists and vaccine experts free of charge.
SPECIFIC CONSIDERATIONS FOR COVID-19 IN PERSONS WITH SPINAL CORD INJURY AND/OR DISEASE (SCI/D)
There is very little available evidence on COVID-19 vaccination in persons with SCI/D. This is due in large part to practical reasons. The primary United States clinical trials testing the Moderna , Pfizer/BioNTech, and Janssen vaccines did not list SCI/D as an “exclusion criteria” for participation in the trials. It is therefore possible, although unlikely, that persons with SCI/D participated in these trials. However, the authors who published the results of these studies have not provided a “sub-group” analysis of those with SCI/D. Furthermore, to our knowledge there are no ongoing randomized clinical trials for COVID-19 vaccine in SCI/D. In the absence of experiments, we must rely on observations. The most recent observational evidence was a short “correspondence to the editor” of the scientific journal Spinal Cord reporting “breakthrough cases of COVID-19 in vaccinated United States Veterans with spinal cord injuries and disorders” . This report showed a “breakthrough” rate of 17 out of 8,316 (0.20%) fully vaccinated Veterans with SCI/D as of April 20, 2021. This rate is higher than what was observed in the rest of the population at this time, but is very low nonetheless and similar to that observed in skilled nursing facilities. Due to these direct observations in SCI/D, as well as parallel evidence from groups of people with other “adjacent” medical conditions, medical professionals are confident that the vaccines are sufficiently effective for persons with SCI/D.
If you choose to “get your shot”, please consider the following:
- Potential for impaired healing if injection site becomes infected; ask the nurse to be extra-careful with sterilizing and then covering the injection site.
- Potential for autonomic dysreflexia if injection is given below the level of injury, occurring in response to the puncture and/or after if site becomes infected.
- Potential for spasm induced when needle punctures skin, possibly disrupting the injection procedure.
If you have any other questions or comments about COVID-19 vaccination in SCI/D, please reach out to our Office of Education and Outreach and ask to speak with Dr. David McMillan.
In 2005 the United States Centers for Disease Control (CDC) elevated the priority of annual influenza (flu) vaccination for persons with SCI/D. This elevated vaccination priority was due primarily to the respiratory considerations as have been outlined on this page. Importantly, seasonal viruses (yes, there are multiple) that cause the flu and the Coronavirus (specifically, SARS-CoV-2) that causes COVID-19 are different viruses. Although these viruses are all respiratory viruses, the CDC has not carried over the 2005 heightened priority status for flu vaccination in SCI/D to the COVID-19 vaccine.
UNDERLYING MEDICAL CONDITIONS
The CDC does not explicitly list SCI/D as one of the specific underlying medical conditions in need of extra precautions. However, the CDC does not provide an exhaustive list of each individual diagnosis that warrants extra precaution, and instead lists broader risk categories. Some of these listed “medical conditions” are risks categories that are known to be secondary complications of SCI/D. For example:
- The CDC lists “Chronic lung diseases” and SCI/D, especially in at cervical level, leads to neurogenic obstructive and restrictive lung complications. As previously mentioned, respiratory complications are a leading cause of death in persons with SCI/D.
- The CDC lists “Dementia or other neurological conditions” and SCI/D is a neurological condition.
- The CDC lists “Heart conditions” and persons with SCI/D are at increased risk of cardiovascular disease (CVD). Cardiovascular complications are a leading cause of death in persons with SCI/D.
- The CDC lists “Immunocompromised state (weakened immune system)” and, as previously mentioned, SCI/D results in “secondary” immunodepression.
- The CDC lists “Overweight and obesity” and persons with SCI/D are at increased risk of obesity. Note that due to SCI/D-specific changes in body composition, obesity can be diagnosed at a body mass index (BMI) of ≥22 kg/ m2 (instead of the ≥30 kg/m2 in the rest of the population).
- The CDC lists “Stroke or cerebrovascular disease, which affects blood flow to the brain” and SCI/D disrupts the brain’s control of the blood vessels possibly leading to neurogenic orthostatic hypotension and thus decreased brain blood flow.
FOR FLORIDA RESIDENTS
Florida COVID-19 Response: Testing and Vaccine Sites
Florida COVID-19 Response: Vaccine Sites
National retail sites with COVID-19 vaccine distribution
Should any medications be taken before or after the vaccine?
According to the CDC, you should not pre-medicate with pain relievers leading up to your vaccine. There is not enough research as to how this can affect the vaccine. You should only take pain relievers if necessary, after receiving your vaccine. If you regularly take pain medications, continue doing so or speak to your doctor. If you are on any other prescription or immunosuppressive medications, you should speak to your physician about what you should before and after receiving the covid vaccine.
Before you arrive, contact the site where you will be vaccinated or review your appointment confirmation email for details about what identification and proof of eligibility you may need to bring to your vaccination appointment.
When you get a vaccine, you and your healthcare provider will both need to wear masks that cover your nose and mouth. Stay 6 feet away from others while inside and in lines. Learn more about protecting yourself when going to get your COVID-19 vaccine.
You should receive a paper or electronic version of a fact sheet that tells you more about the specific COVID-19 vaccine you receive. Each authorized COVID-19 vaccine has its own fact sheet that contains information to help you understand the risks and benefits of receiving that specific vaccine. Learn more about different COVID-19 vaccines.
After getting a COVID-19 vaccine, you should be monitored on site for at least 15 minutes. Learn more about COVID-19 vaccines and rare severe allergic reactions.
You should get a vaccination card that tells you what COVID-19 vaccine you received, the date you received it, and where you received it. Keep your vaccination card in case you need it for future use. Consider taking a picture of your vaccination card as a backup copy.
If you do not receive a COVID-19 vaccination card at your appointment, contact the vaccination provider site where you got vaccinated or your state health department to find out how you can get a card.
What precautions should I take?
Regardless of vaccine status, individuals should continue following the CDC guidelines to COVID-19 which include:
- Social distancing
- Wearing masks
- Wash hands often
- Limit contact with commonly touched surfaces or shared items
- Avoiding large gatherings
Ask your vaccination provider about getting started with v-safe, a free, smartphone-based tool that uses text messaging and web surveys to provide personalized health check-ins after you receive a COVID-19 vaccination. Through v-safe, you can quickly tell CDC if you have any side effects after vaccination. V-safe also reminds you to get your second dose if you need one.
FOR FLORIDA RESIDENTS
How should people schedule a vaccine appointment?
There are multiple locations in Florida that are distributing vaccines. For your convenience, the following are locations in Miami-Dade County that are administering vaccines, along with who qualifies. Schedule to get your vaccine at one of these Jackson Health System sites. Please note date updated at top of page.
State and Miami-Dade County Run Locations
Appointments are no longer required to receive the vaccine at one of the County drive-thru vaccination sites – Tropical Park, Zoo Miami and the Homestead Sports Complex. For a faster registration process on-site, residents are encouraged to sign up online for appointments available both same-day and in coming days or by calling 305-614-2014.