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

Glioblastoma is an aggressive, deadly brain tumor that currently has no cure. People living with GBM deserve quality care and the ability to make informed decisions.

Now is the time for a GBM Bill of Rights. Developed by patients, alongside our families and advocates, this is the roadmap to patient power and a brighter future.

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. In 2020, we ran another survey asking if people had these rights now; many don’t. 

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 and tissue for research.

The right to:
Best end-of-life care
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 for scientific research.

We thank our nonprofit supporters of the GBM Bill of Rights
American Brain Tumor Association, Brain Cancer Project of Count Me In, Brain Donor Project, Brains for the Cure, Brain Tumor Network, Chris O’Brien Lifehouse, FundLove, GlioNET, Head for the Cure Foundation, International Brain Tumour Alliance, Musella Foundation, National Brain Tumor Society, StacheStrong, Tessa Jowell Foundation

We encourage everyone to share the GBM Bill of Rights, here’s a toolkit with the social media graphics, a printable black & white PDF (take it with to your next doctor visit), and press release. 

Newly diagnosed? We recommend reading the Musella Foundation Guide and the UK-based International Brain Tumour Alliance Charter of Rights (good for people outside the US).

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