As we all contemplate how the novel coronavirus (COVID-19) might affect our lives and our communities, I want to take a moment to share some special considerations for those affected by chordoma, as well as steps that members of the chordoma community can take now to be prepared.
Risk of COVID-19 to chordoma patients
Because this is a new virus, there are still many unknowns about how COVID-19 affects certain populations. At this point, there is no specific evidence to suggest that most chordoma patients are at any greater risk than the general population. However, patients who have compromised immune systems – for example as a result of recent surgery, ongoing systemic therapy, or prescription corticosteroids – may be at greater risk.
What you can do
Chordoma patients who are currently undergoing treatment or who are otherwise known to be immunocompromised should consider taking extra precautions to avoid exposure. See CDC guidelines for People at Risk for Serious Illness from COVID-19 and consult a healthcare provider if you have additional questions about your risk or precautions you should take.
Access to care
Chordoma patients should be prepared for the possibility that COVID-19 may impact their ability to receive treatment, supportive care, or follow up scans for some period of time either as a result of limitations on travel or due to the healthcare system in certain areas being overwhelmed (as is currently happening in Italy). As the pandemic progresses, certain medical centers may be forced to direct limited healthcare resources to the most seriously ill patients, and, consequently, may not be able to provide regular care to other patients.
What you can do
- If you are currently receiving ongoing treatment at a medical facility, we suggest talking with your healthcare provider(s) about what would happen in the event you are unable to continue receiving care at that facility for a period of time, and whether alternate arrangements could be made if necessary.
- If you have a procedure planned or anticipate needing a procedure within the next several months, we suggest proactively talking with your healthcare provider about how the evolving COVID-19 pandemic could affect your care.
The Chordoma Foundation is here to help
As always, you can rely on the Chordoma Foundation to be a source of information, support, and guidance as the COVID-19 situation unfolds.
- We have created a Coronavirus (COVID-19) and chordoma page on our website which includes more information about the possible implications of COVID-19 on the chordoma community, and links to guidance regarding COVID-19 from leading chordoma treatment centers across the world.
- Our Patient Navigators are here to answer any questions or address any challenges that you may face. You can reach them at chordoma.org/request-help or by emailing firstname.lastname@example.org.
- Our online community Chordoma Connections, as well as the volunteer-run Chordoma Support and Survivors Facebook group, can also be great sources of support.
We are well-positioned to continue serving the chordoma community through the challenges that may be ahead, as our team is already equipped to work remotely, and our Board has taken prudent steps over the years to ensure the financial strength and stability of the organization.
We will, of course, continue monitoring the situation and will be back in touch if there are any major developments pertinent to the chordoma community. In particular, we are making contingency plans should it become necessary to postpone the Chordoma Research Workshop and Community Conference currently scheduled for July. At this point, both events remain on, but we will let you know if that changes.
Most importantly, on behalf of all of us at the Foundation, I hope that you stay well and wish you all the best in weathering whatever lies ahead. Please be safe and, as always, don’t hesitate to be in touch.