The EndBrainCancer Initiative Urges Immediate ACTION so Brain Cancer Patients are Not Excluded from Medicare Coverage for Genetic Profiling (Next Generation Sequencing-NGS)

SEATTLE, May 9, 2019 /PRNewswire/ — In 2018, the Centers for Medicaid and Medicare Services (CMS) approved funding for specific diagnostic tests associated with genomic profiling, both for predictive usages and for analysis for cancer patients with recurrent, relapsed, refractory, metastatic, and/or advanced Stages III and IV cancers. The EndBrainCancer Initiative (EBCI) urgently seeks amendment or clarification of this regulation (Transmittal 215) to ensure that brain cancer patients are covered by the new medicare provision, and not excluded. Public comment closes on May 29.

Two critical changes are needed.

First, the rules as stated approve funding for patients with “Stage III or Stage IV” cancer. Brain Cancer is not designated in “stages” but is designated in “grades.” Grade III and Grade IV are comparable to Stage III and Stage IV with other cancers. We therefore advocate for change in language or confirmation in the explanatory memo so that brain cancer patients with the highest grade tumors—Grade III Anaplastic Astrocytoma (AA) and Grade IV Glioblastoma (GBM)—are covered for this testing.

The second change pertains to recurrent brain tumors. A high percentage of Grade III and Grade IV brain cancer patients will experience recurrent tumors. We ask that CMS provide coverage for repeat testing for patients’ specific disease states because the genetic profiles of recurrent tumors often diverge from the original profiles. It is therefore medically necessary to get new profiles to identify variations to assist with treating patients with a corresponding therapeutic product or to place the patients in appropriate clinical trials that match the profiles.

Genetic profiling, as in many other cancers, has become very significant in the analysis, treatment, and research of brain cancer. The EndBrainCancer Initiative has historically advocated for inclusion of Next Generation Sequencing (NGS) as part of Standard of Care and for coverage via Medicare / Medicaid and private insurance entities. May is National Brain Cancer Awareness month.

If you are a patient and/or caregiver, health professional, researcher or other type of brain cancer advocate, you can comment directly requesting these changes at this link: The close for public comment is May 29th at 5:00 PM eastern. We urge ACTION and comment immediately. Here is the explanatory overview for this:

Dellann Elliott Mydland, President & CEO
EndBrainCancer Initiative
[email protected] 

ABOUT the EndBrainCancer Initiative The EndBrainCancer Initiative (EBCI, formerly the Chris Elliott Fund) is a national brain cancer and brain tumor patient advocacy and services organization and 501(c) 3 social enterprise with offices in Redmond, Washington. Established in 2002 and now celebrating 17 years of service, EBCI is committed to finding a cure for brain cancer and bringing HOPE to the lives of patients and their families through its programs:

  • “Direct Connect” Patient Support and Services Program
  • Brain Tumor Disease Education, Awareness, and Outreach Program
  • Brain Tumor Patient Advocacy and Access
  • First Step Initiative
  • Team Up Initiative

Since its founding, EBCI has helped thousands of patients, caregivers, and their families and has become a credible and trusted resource at all levels in the brain cancer treatment community from patients to research institutions to pharmaceutical and regulatory entities advocating on the National and State level for the approval and reimbursement of new therapies for cancer patients. EBCI also participates as the “Patient Voice” in clinical trial design, an example can be seen in CNS Oncology (Link to Article).

The EndBrainCancer Initiative (EBCI) also participates in a program at the National Institutes of Health (NIH), National Cancer Institute (NCI), Center for Cancer Research (CCR), Neuro-Oncology Branch (NOB) called NCI-CONNECT (Comprehensive Oncology Network Evaluating Rare CNS Tumors). The program aims to advance the understanding of rare adult central nervous system (CNS) cancers by establishing and fostering patient-advocacy-provider partnerships and networks to improve approaches to care and treatment.

EBCI supports about 900+ patients, caregivers and families, free of charge annually through its “Direct Connect” Program, and provide Education/Awareness/Outreach to over 8.7 million annually, including members of the Brain Tumor Community. EBCI is a member of the American Society of Clinical Oncology (ASCO), Society for Neuro-Oncology (SNO), American Association of Neuroscience Nurses, American Association for Cancer Research, and Life Sciences Washington, among other organizations.

If we can help, please contact us at WeCare(at)EndBrainCancer(dot)org or 425.444.2215. To support EBCI’s efforts, programs, and services, provide a gift today at

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