The coronavirus pandemic has certainly caused 2020 to become one of the most challenging years many of us have ever experienced. We, in the Tourette community, have had to deal with many stresses and challenges related to quarantine, closures and social distancing; from remote school, to lost jobs, isolation, anxiety and depression. Finally, hope has arrived! In December, the FDA approved two new vaccines for emergency use for COVID-19, one developed and manufactured by Pfizer and another by Moderna. Widespread inoculation of the population with these vaccines, and others in the pipeline, hopefully in time will end the pandemic and facilitate a return to a new normal. However, members of the TS community have been asking: what exactly are these vaccines? Are they safe for people living with Tourette? And will they exacerbate my tics?
The Tourette community has reason to be hopeful. There are three things that are quite remarkable about these two new vaccines. First, the speed at which they were developed. To go from identification of a new virus to a working vaccine in under 12 months has to be some type of medical world-record. Second, a few of these vaccines represent an entirely new class of therapeutics that contain RNA and use the body’s own cells to generate immunity; and third, the vaccines appear to be highly effective in preventing COVID-19, successful beyond all expectations.
To Michael S Okun, MD, a neurologist, Professor and Chairman of the Department of Neurology at the University of Florida Health (and TAA Medical Advisory Board Member) this new class of RNA-vaccines is a milestone in medical history. “More standard vaccines such as the one used for the flu, commonly contain inactive fragments of the actual virus. mRNA vaccines in contrast harness the body’s own cells to make small, synthetic copies of the COVID-19 spike protein. By showing the immune system the spike protein, it stimulates the generation of antibodies to the virus. It’s the antibodies that will help people fight off a potential infection. It is a brilliant translation of science into medicine.” Still, Dr. Okun cautioned not to let your guard down. “Although these mRNA vaccines strongly suppress illness, it is possible for someone who has been vaccinated to be a carrier of the virus and to infect others.” Therefore, he is a strong advocate of continued vigilant masking and social distancing.
Still, many have questions about these vaccines. Can a new type of vaccine that was developed so rapidly actually be safe? Dr. Okun carefully looked at the clinical data submitted to the Food and Drug Administration (FDA), and believes the answer is a definite yes. “Many of our existing vaccines have an incredible safety record over many decades, and the Pfizer and Moderna vaccines were tested on tens of thousands of people and shown to be safe and more effective than anyone could have imagined.” While even a very low risk does not translate to no risk, he wanted to make one point clear, “the dangers of serious COVID-19 illness from not being vaccinated far outweigh any minor risks of the vaccine. Additionally, since we are seeing long term unanticipated COVID-19 symptoms and syndromes (so called COVID-19 long-haulers), this should be all the more reason to strongly consider a vaccine.”
Despite this success, Dr. Okun notes that there are some questions that remain. “The urgent need for this vaccine meant certain decisions had to be made when designing the trials and some of the trial phases had to be conducted simultaneously. One of the choices in the initial trials was that they did not include young people and consequently it is only approved for age 16 and above”. While this might appear concerning, Dr. Okun notes studies of younger individuals are ongoing, and “there is currently no data in any COVID-19 vaccine trial that has revealed a harm to children and younger people. Since many of our non-COVID vaccines are administered to infants and young children we are hopeful that the trials will establish a safety record for COVID-19 and that we can keep the community abreast of the data in near real-time.”
"Based on the presently available data, there is no reason for patients affected by Tourette Syndrome or other tic disorders to defer receiving the COVID-19 vaccine."
What about the vaccine exacerbating TS or tics? Co-Chairs of the TAA Medical Advisory Board Keith A. Coffman, MD, Director of the Movement Disorders Program at Children’s Mercy Hospital in Kansas City and Barbara Coffey, MD, MS, Chairman of the Department of Psychiatry and Behavioral Sciences at the University of Miami both say there is little reason to worry. Dr. Coffey notes “While we do not have specific data on these COVID vaccines and Tourette, there is no reason to believe that long-term the vaccine will exacerbate tics.. While I am recommending it to my patients, as the benefits clearly outweigh any potential risks, everyone should discuss concerns with their own health care provider”. Dr. Coffman weighed-in “The vaccines that are currently available have been proven to be incredibly safe and effective in large clinical trials. Presently, there is no data to indicate that receiving the COVID-19 vaccine will have any impact on the symptoms in patients affected by Tourette Syndrome or tic disorders. A PubMed search completed this morning for COVID-19 vaccine and Tourette or tic yielded 0 results.” he continues, “Based on the presently available data, there is no reason for patients affected by Tourette Syndrome or other tic disorders to defer receiving the COVID-19 vaccine. The only groups of patients who are being advised to defer the vaccines are those with allergies to the components of the vaccine, prior allergic reactions to vaccines, and/or patients who are immunocompromised.”
Finally, Amanda Talty, President Chief Executive Officer off the TAA would like to reassure everyone in the Tourette community that the TAA will continue to track these new vaccines. “We are in constant contact with the world’s leading TS experts, like Dr. Okun, Dr. Coffman and Dr. Coffey, on the implications of this unprecedented health crisis.” She added, “should there be any serious adverse effects attributed to the vaccine, the TAA would rapidly notify the Tourette community. It is important that everybody is well-armed with all the facts. Hopefully, this is the start of the return to the new normal.”
Coronavirus Impact Survey
Recently, the TAA conducted a survey about the impact of the Coronavirus on individuals and families impacted by Tourette Syndrome and Tic Disorders. The results of the survey, seen below, has helped the TAA to assess the impact and advocate for the community.
