COVID-19 VACCINATION FOR INDIVIDUALS WITH NEUROFIBROMATOSIS
The CTF have been receiving enquiries about the safety and accessibility of the COVID-19 vaccination for those affected by neurofibromatosis.
We have consulted with our experts and collated information currently available to help answer some of the questions you may have.
Vaccination is now available in Australia and priority is given to people with an underlying medical condition. You should consult with your doctor as to whether you qualify for priority vaccination.
There are some circumstances in which receiving a vaccine may not be advisable. Those who have known bleeding disorders or who are immunocompromised (for example, receiving chemotherapy) should consider their risk in conjunction with their healthcare providers.
The NF Clinic at the Royal North Shore Hospital indicates that they are always guided by the individual’s personal medical circumstances when discussing the best approach regarding vaccination.
They have generally recommended that those who are on Avastin (and now Mvasi) and preparing for surgery are prioritised for vaccination.
Prof Bruce Korf, from the NF Center at the University of Alabama and a recognised international expert in NF commented in a blog post earlier this year about the potential effects of COVID-19 on individuals with NF.
“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.”
He further states that people with NF should be encouraged to get vaccinated. Those experiencing any of the issues outlined above as their severity of COVID-19 symptoms would be exacerbated if they be exposed to the virus.
He also addresses the safety of the available vaccines.
"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.“
The public information on vaccines is constantly changing and being updated regularly. This information is current on the day of publication, but please always consult your healthcare providers, the Department of Health’s COVID-19 Vaccines or ATAGI webpages.
Vaccination is free and voluntary.
For a confidential discussion about COVID-19, vaccination and NF please feel free to contact our Support Services Team on 02 9713 6111 or support@ctf.org.au. Where appropriate we will refer you onto experts within our NF Clinic network for a fuller discussion.
This update has been developed in conjunction with Clinical Associate Professor Mimi Berman - Head of the Clinical Genetics Department at Royal North Shore Hospital on the 29th of July 2021.