As the Biden Administration’s relaunched Cancer Moonshot program aims to cut cancer deaths in half within 25 years, stated goals include greater collaboration and improved data sharing.
Making critical resources immediately available upon diagnosis can help achieve these stellar ambitions—especially for patients with glioblastoma multiforme (GBM), a particularly deadly and fast-growing brain cancer. With no cure.
Celestial GBM warriors include Sens. Ted Kennedy and John McCain, President Biden’s son, Del. Attorney General Beau Biden, Rush drummer Neil Peart—all of whom succumbed to this highly malignant and aggressive cancer that attacks by surprise with no known cause and no recommended screening.
The grim reality? According to the Glioblastoma Research Organization (GBMRO), out of more than 13,000 people diagnosed with GBM in the United States every year, patients survive an average of 12-18 months after diagnosis. Time is definitely not on their side.
On a hot Seattle morning in June 2021, my presumably healthy sister-in-law suffered a sudden grand mal seizure. A week later—with no prior family history—Alice was diagnosed with Stage IV GBM.
Boom.
This crash landing launched a Google onslaught to find top treatment centers, specialty oncologists, surgical options, clinical trials, national GBM organizations, patient articles, the latest treatments and research, Facebook patient stories, homeopathic supplements, brain caps, light machines and anything else that offered a fighting chance.
Alice passed last December at age 61, about 18 months after her diagnosis.
What’s heartening is the global medical community’s immediate response to cold email requests. Leaders such as Thomas Hyde, M.D., Ph.D., chief medical officer at Johns Hopkins Lieber Institute for Brain Development who replied about requesting compassionate use of a new drug. And Ronit Satchi-Fainaro, Ph.D., head of the Center for Cancer Biology Research and Laboratory for Cancer Research and Nanomedicine at the Sackler Faculty of Medicine, Tel Aviv University, who recapped their promising GBM study and clinical trials around the world. The list goes on.
But what’s needed is a dedicated and practical GBM channel that aggregates critical resources for devastated new patients, their families and oncologists: a go-to lifeline to help navigate what’s next. Like other cancers that present in late stages with a poor prognosis, information sharing is vital to patient outcomes as each precious day passes.
A GBM resource integrated into Cancer Moonshot could include real-time information, including:
GBM treatment centers around the country and/or the world.
National GBM organizations including GBMRO, the Glioblastoma Foundation, the National Brain Tumor Society, the Brain Tumor Network and the Brain Tumour Charity and others offering patient support groups, the latest research and many more resources.
Websites listing clinical trials including ClinicalTrials.gov, FindMeCure, Ivy Brain Tumor Center, the Mayo Clinic, Johns Hopkins Medicine and others including private companies.
The latest treatments including surgical options, available and emerging drugs, et al.
Increasingly acknowledged natural treatments as described in published global studies including cannabis-based products that also help manage symptoms.
A possible virtual patient navigator to connect patients to clinical trials.
Research news including clinical trials for SurVaxM, an experimental vaccine.
New programs including Stanford Medicine’s Innovative Medicines Accelerator (IMA), MD Anderson’s Glioblastoma Moon Shot, et al.
Real-time access to test results for patients and designated others.
Access to/maintenance of bio material removed during surgical procedures (e.g., to initiate personalized vaccines).
Caregiver resources including tips to work with their oncology teams, maintain treatment routines and medical supply shopping outlets including Amazon.
Perhaps this effort could be housed within the capabilities of the existing Moonshot Brain Cancers Forum.
Additionally, an available domain such as GreatBrainMinds.com offers an easily remembered acronym.
A collaborative GBM channel could have helped guide Alice’s journey. It’s overdue for liftoff.