Before beginning this month’s blog topic about NF issues related to COVID-19, I’d like to mention that our annual UAB NF Symposium Family Day was held on Saturday, March 13, as a virtual event this year. Co-sponsored by the UAB Department of Genetics and Children’s Tumor Foundation (CTF), this half-day, free event typically occurs in the fall each year. While concerns about COVID-19 did not allow the Symposium to be held in person at the usual time of year, we felt it was important to host the event in a virtual format this year to give patients and families the same opportunity to hear a series of presentations on a range of NF-related topics from clinical experts. The event also provides an important way for families to establish a connection with others sharing the same journey, which can be especially meaningful for those who are newly diagnosed.

This year’s Symposium opened with an overview that I provided of NF clinical care and research, now and into the future. Other featured speakers included UAB adult neuro-oncologist Mina Lobbous, MD, who gave a presentation on adult care as well as a clinical trials update, as well as UAB pediatric neuro-oncologist Katie Metrock, MD, who provided a talk on pediatric care and clinical trials research. The event also included a question-and-answer session featuring Dr. Lobbous, Dr. Metrock, and me. I’m pleased to report that we had more than 180 participants at this year’s Symposium, which exceeds typical attendance at the in-person event. A clear benefit of the virtual format is that it allows for greater participation by eliminating the need for participants to travel. Although most attendees in past years have been from our immediate geographical region, this year we had many participants from around the nation and overseas.  It was rewarding that our reach expanded significantly this year due to the virtual format and that we were able to provide NF patients and families with important information from clinical experts.  Based on this experience, we will be exploring the possibility of continuing to have a virtual meeting option for future symposia.

UAB NF Clinic Developments

In news related to the UAB NF Clinic, we are planning to resume in-person appointments in the UAB NF Clinic in May as clinic staff become vaccinated against COVID-19. Even when in-person visits begin, we will continue conducting telemedicine visits indefinitely because of the benefits this format provides to our patients in terms of convenience and improved access in certain instances. During the pandemic, medical licensing restrictions on providing care to patients in other states through telemedicine were loosened, allowing us to serve patients outside of Alabama. Many of these restrictions have been restored, so our ability to offer telemedicine visits to patients outside Alabama is limited, but we expect to continue to offer the option of telemedicine within the state into the future.  It is possible that, in the future, there will be greater access to telemedicine even outside the state.

Considerations for Individuals with NF Related to COVID-19

At the start of the pandemic, we discussed the question of whether people with NF are at greater risk of complications from COVID-19. As explained at that time, there is no evidence of immune dysfunction in people with NF that puts them at greater risk of complications from the novel coronavirus. However, individuals with NF who have specific medical problems with lung involvement might be at greater risk of complications of COVID-19 illness, including people with large plexiform neurofibromas in the chest cavity, chronic lung disease, or severe scoliosis, all of which can impair lung function.

Many NF patients are also understandably concerned about whether there is any safety risk of the vaccine for people with NF; fortunately, we have no evidence of specific safety concerns related to the COVID-19 vaccine in people with NF.  Those who are on treatments that would depress the immune system, such as chemotherapy for a malignant tumor, should discuss the safety and efficacy of vaccination with their health provider.  Lastly, some people are concerned about whether the Pfizer and Moderna vaccines, both of which are mRNA-based vaccines, can interact with the NF1 gene or its mRNA transcript. Messenger RNA (mRNA) is the RNA copy of a specific gene that is the code used to make a protein.  In the case of NF1 the protein is neurofibromin, for NF2 it is called merlin; for the vaccine, it is a protein that is unique to the virus.  It is important to understand that these mRNAs have nothing to do with one another and do not interact with one another.  Hence, there is no danger that the COVID-19 vaccine mRNA will have any adverse effect on the function of the NF1 or NF2 mRNA or the NF1 or NF2 genes.  The vaccines also do not modify the DNA in any way, and therefore do not pose any specific safety risks to persons with any form of NF.