Glioblastoma Bill of Rights:
A new patient-centered call to action

Glioblastoma is a debilitating brain cancer with few treatment options. Patients deserve access to quality care and the agency to make informed decisions. We hope that one day soon, GBM will be considered a chronic-but-treatable disease, rather than a terminal one.

Background: In the lead-up to the first Glioblastoma Awareness Day (July 17, 2019), OurBrainBank surveyed hundreds of GBM patients and carers about their experiences. OurBrainBank, with the help of fellow advocates, used the results to craft a set of concepts — some practical, some aspirational — to call for improving the standard of care and quality of life of GBM patients.

We, the patients, have…

The right to:
Patient-centered care
An equal and collaborative patient/doctor relationship with personalized treatment that includes genomic and genetic testing, and tumor analysis.

The right to:
A second opinion
A second opinion offered at appropriate stages of diagnosis and treatments.

The right to:
Clarity of information
Up-to-date, accurate information about all potential treatment options; transparency about treatment centers and their outcomes.

The right to:
Specialist care
Access to a coordinated medical team — brain tumor specialist, neuro-surgeon,
neuro-oncologist, radiation oncologist, and others.

The right to:
Access to trials and experimental treatments
Up-to-date, accurate information about new drugs, treatments, and clinical trials, including international options.

The right to:
Psychological support
Comprehensive psychological help for us and our carers.

The right to:
Money-blind treatment
Best treatment regardless of personal financial situation.

The right to:
Fast-tracked treatments
Fast-tracked MRI results, treatments, and ER visits.

The right to:
Patient-owned data
Ownership of and access to our health data, and the ability to transport and
donate our data for research.

The right to:
Best end-of-life care
Information about and access to pain management, palliative care, and hospice.

The right to:
Brain donation
Information provided to us and our families about no-cost brain donation.

We thank our advocacy partners who support and advise us: The Musella Foundation, National Brain Tumor Society, StacheStrong, GlioNET/Chris O’Brien Lifehouse, the Brain Donor Project, and Count Me In [list in formation]. 

Please note the GBM Bill of Rights does not neccessarily reflect the views of our advocacy partners.