The GBM community is used to challenges, but Covid-19 is one that we never expected. We're a resilient community. We're used to self-isolation. We're used to fear of infection. Our experience can help others. How are you coping?
Please also keep in touch with us via Facebook, Twitter, YouTube, Instagram, and Linkedin. A member of our Facebook group posted a good video about living with GBM during a pandemic.
Did you know that the Centers for Medicare & Medicaid Services (CMS) has increased access to telehealth services so that beneficiaries can get a wider range of services from their doctors without having to travel to a healthcare facility? Fabio Iwamoto MD, Chair of the OurBrainBank Medical Advisors and Deputy Director of Neuro-Oncology at Columbia University, points out how this may help the GBM community:
"Telehealth visits were usually restricted to patients in rural areas without access to healthcare in person. The US Federal Government has broadened access to telehealth so that beneficiaries can receive a wider rage of services from their doctors without having to travel to a healthcare facility due to Covid-19. This maybe a good opportunity for patients with GBM in need of a second opinion."
We've introduced regular Tuesday video chats so that we can stay connected and share our stories. Join your fellow GBM patients and carers every Tuesday at 12 noon ET.
We hope your medical center will continue to provide all your treatments. Our fellow advocates the National Brain Tumor Society offers Covid-19 information and resources. Also, the International Brain Tumour Alliance has assembled an excellent list of Covid-19 links for brain cancer patients, carers, and healthcare professionals.
We want to continue to grow and stay focused on our mission: to move GBM from terminal to treatable, powered by patients.
If you're using our free symptom-tracking app, please continue to do so. If you're having video and phone consults, you can send your data to your medical team via email using the "Share my data" feature, here’s a “how to” video.
You are not alone. We are here for you.
Thank you for being part of our community and stay safe!
The OurBrainBank Team: Jessica, Aurelia, and Martha