As the world grapples with the challenge of the novel coronavirus, I have received many inquiries related to the risks associated with viral infection in individuals with NF. Three of the most common questions are: 1) Are individuals with NF at greater risk for being infected with the virus; 2) does the virus lead to more severe illness in those with NF; and 3) if an NF patient is being treated with medication or on a clinical trial, does this pose a special risk? In thinking about these questions, we need, of course, to remember that NF is really a term that covers three distinct conditions – NF1, NF2, and schwannomatosis, that might raise different issues regarding the viral infection. Second, this is obviously new and uncharted territory – anything we say about risks of coronavirus infection is based on the limited recent knowledge of this new disorder and general experience regarding individuals with NF who develop other viral illnesses. There is a lot left to be learned about coronavirus, and about infectious disease risks in NF in general.
Susceptibility to Coronavirus Infection
The reassuring news is that I’m not aware of any evidence that persons with any form of NF are at greater risk of viral infection compared to those who do not have NF. I haven’t seen evidence of any generalized immune problems in persons with NF, and I haven’t noticed that those with NF are more susceptible to typical viruses such as common colds and flu, for example. However, if an individual with NF has medical problems that requires seeing a physician more often, this could increase human contact and could therefore increase the risk of exposure to the virus. My recommendation at this time is that people with NF should follow the same guidelines issued by the CDC (www.coronavirus.gov) and NIH (www.nih.gov/coronavirus), which include avoiding exposure to groups of more than 10 people and self-isolating at home as much as possible.
Risk of Complications of Coronavirus Infection
Regarding the question of outcomes of people with NF who contract the virus, there are no data as of yet related to this issue. To my knowledge, it has also not been studied whether common colds or flu are more severe in individuals with NF, although the ability to fight infection in people with NF does not seem to be impaired.
It is possible that individuals with NF who have specific medical problems might be at greater risk of complications of coronavirus infection. For example, those who have severe scoliosis (curvature of the spine) or large plexiform neurofibromas in the chest cavity, might already have impaired lung function. In these individuals, one might expect that the lung manifestations of coronavirus infection could be exacerbated. In addition, there is a subset of people with NF1, usually older adults, who develop chronic lung disease that can impair lung function. We don’t know how common these lung manifestations are; I’ve personally seen this just a few times in the many years I’ve been following patients with NF1, but it’s possible that milder versions are more common and have escaped notice. This condition usually presents as respiratory distress upon exertion, and subsequent testing of lung function reveals impairment, along with visible changes on imaging of the lungs. Again, one might imagine that a person with NF1 who has impaired lung function to begin with might be at increased risk of coronavirus complications. There are no data on this point, however. Additional studies are needed to determine the frequency of this lung manifestation and how COVID-19 impacts NF patients with this condition.
Risk to Patients on Treatment or in a Clinical Trial
There are some individuals with NF who are currently being treated for a complication of NF or are enrolled in a clinical trial of an investigational medication. Given that there are many different types of medications being used, I suggest that these individuals should discuss any risks with the physician who is managing their treatment or participation in the trial. Some types of medications, especially those used to treat malignancies, might impair the immune system and therefore could confer increased risk of infection, whereas others do not affect the immune system. There is also the risk associated with frequent visits to the clinic, and therefore exposure to the virus. As much as possible, we’re trying to work with patients by using telemedicine to minimize exposure; also, for those on clinical trials, we are trying to work with local physicians to reduce the need to travel to a specialized clinic.
Conclusion
This is a difficult time for everyone, and having NF adds an additional dimension for concern. For now, the best advice is to follow guidance issued for everyone to minimize exposure to the virus; I would also recommend that persons with NF be in touch with their NF specialist if particular questions arise related to their condition. Last week, Dr. Scott Plotkin (Massachusetts General Hospital) and I participated in a global video chat on coronavirus infection and NF organized by the Children’s Tumor Foundation. A recording of this presentation can be found at https://www.ctf.org/news/coronavirus-covid-19-update.
