94% of People With Glioblastoma Demand Healthcare Overhaul

NEW YORK, July 16, 2019 /PRNewswire/ -- 94% of people affected by glioblastoma see providing the "best treatment regardless of personal financial situation" and 55% see "the elimination of co-pays" as essential. These are the headline results from 400+ people surveyed by OurBrainBank.

The survey shows: 

• A strong desire — 61% — for a second opinion upon diagnosis.

• 74% want a 24-hour turnaround for MRIs, and 84% want faster insurance approvals for medically-authorized treatments.

• Overwhelming support for genetic tumor analysis (83%).

• Patients want hospitals to be more transparent (86%)

• Most are willing to donate their brains after death (76% yes, 22% maybe, 1% no) reflecting perhaps the selflessness of people living with this most aggressive of brain cancers, and a desire to rid the world of GBM, even if a cure comes too late for them.

GBM patients face a median survival of 14 months, and +5% survive five years. In nearly 100 years, only five new treatments have been approved.

Hundreds of comments poured in.

• "My mother was left to sit in a hospital with no neurologist and no brain tumor specialist for SIX days after they discovered the mass. It was not until a brave nurse told us she needed to be transferred. She should not have suffered because there was either no standard of care or the staff simply didn't care about another old person in Florida dying!"

• "I've lost 4 immediate family members to GBM4 and was only able to get genetic testing on my father after he passed because I drew the blood and sent it off. No family member should have to do that."

• "Hold public and private insurers accountable for complying with NCCN guidelines and require transparency in any denials of care."

• "Caregivers feel so alone and end up doing their own tireless research, using their own funds."

OurBrainBank founder Jessica Morris, living with GBM, will hand-deliver the findings to Capitol Hill on July 17.

Fabio Iwamoto MD, Deputy Director, Neuro-Oncology, Columbia University and chair of OurBrainBank's medical advisors, commented: "This survey and patient comments make for compelling reading — people are rightly desperate for change."

Jessica Morris, founder OurBrainBank said, "Our survey shows imagination in the face of adversity — we are a desperate community. I cannot think of a better way to honor the lives of those who have died from glioblastoma, by devoting our lives to make real change.

"OurBrainBank thanks the U.S. Senate for this important gesture."

In a rare showing of bipartisanship, the Glioblastoma Awareness Day Resolution was signed by Senators Elizabeth Warren (D-MA), Mitch McConnell (R-KY), Kyrsten Sinema (D-AZ), Lindsey Graham (R-SC), and Martha McSally (R-AZ).

It honors those we've lost and recognizes the challenges faced by people living with GBM. Public figures who've succumbed include Senators John McCain and Ted Kennedy; Beau Biden, and George Gershwin.

OurBrainBank is a patient-led movement designed to move glioblastoma from terminal to treatable, powered by patients. Our key tool is a free app which both enables people affected by GBM to manage their disease better and helps further research.

Contact: Martha Wilkie  2124637664, [email protected]

OurBrainBank Advisors Terri S. Armstrong PhD, NIH Marina Benaur MD, Memorial Sloan Kettering Alexis Demopoulos MD, Northwell Health Bruce Hellman CEO, uMotif  Fabio M. Iwamoto MD, Columbia University Mario Lacouture MD, Memorial Sloan Kettering Lakshmi Nayak MD, Dana-Farber Cancer Institute Daniel A. Orringer MD, Michigan Medicine Joshua Silverman MD, NYU Langone Health

Full release OurBrainBank.org Facebook.com/OurBrainBank + Facebook.com/groups/OurBrainBank Twitter.com/OurBrainBank YouTube.com/c/OurBrainBankForGlioblastoma Instagram.com/OurBrainBankGorGlioblastoma Crowdrise (donate)

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SOURCE OurBrainBank