Another Advocacy Win for Patients: Medicare Finalizes Coverage for Some CAR T-Cell Therapies On August 7, the Centers for Medicare & Medicaid Services (CMS) finalized the decision to cover FDA-approved Chimeric Antigen Receptor T-cell, or “CAR T-cell” therapy, which is a form of cancer treatment that uses a patient’s own genetically-modified immune cells to fight disease. FDA-approved CAR T-cell therapies are approved to treat some people with specific types of cancer – certain types of non-Hodgkin lymphoma and B-cell precursor acute lymphoblastic leukemia. CMS approved the NCD (National Coverage Decision) without some of the requirements that had some providers concerned. With the decision, it establishes coverage that increases reimbursement, approves usage in certain FDA-approved healthcare facilities other than hospitals, reduces some reporting requirements that may have discouraged adoption, and supports ongoing monitoring and collaboration in the future between CMS, the FDA, and the NCI. “This decision is great news,” commented Dellann Elliott Mydland, President and CEO of the EndBrainCancer Initiative. “We applaud the CMS for moving this forward and providing expanded coverage for these promising treatments. The EBCI is excited about the research for CAR T-Cell Therapy to treat brain cancer and we hope that research will progresses to the […]
The EndBrainCancer Initiative Urges Support for New FDA Clinical Trial Diversity Guidelines and Proposes Key Amendments Proposed Changes Offer Patients with Brain Cancer and Other Rare Diseases Access to Advocacy Oriented “Patient Partner Navigation Services” Press Release in PDF Format Press Release on PRNEWSWIRE National Distribution Network SEATTLE, Aug. 1, 2019 /PRNewswire/ — The EndBrainCancer Initiative (EBCI) urges support for the new guidelines proposed by the FDA entitled “Enhancing the Diversity of Clinical Trial Populations — Eligibility Criteria, Enrollment Practices, and Trial Designs Guidance for Industry.” With the public comment period ending on August 6th, the EBCI also proposes changes to the guidelines that would ensure that brain cancer patients and other rare disease patients are offered the opportunity to interact with advocacy oriented outside “Patient Partners Navigation Services” at the time of diagnosis prior to surgery and as a regular part of clinical trial participation to increase inclusion, diversity, and enrollment in support of the growth goals of the guidelines (EBCI Letter and Public Comment). Overall, this FDA draft guidance document provides recommendations for inclusive research practices for industry/drug companies clinical trial sponsors to broaden eligibility criteria and increase enrollment of underrepresented populations, including patients with other diseases […]
The EndBrainCancer Initiative Calls on All Americans to Recognize and Support the Inaugural National Glioblastoma Awareness Day on July 17th Press Release in PDF Format Press Release on PRNEWSWIRE National Distribution Network SEATTLE, July 15, 2019 /PRNewswire/ — In June, the U.S. Senate took swift action and passed Senate Resolution 245 by unanimous consent. July 17, 2019 is officially “Glioblastoma Awareness Day” nationally (#GBMDay)! Glioblastoma (GBM) is the most common and deadly form of brain cancer. The EndBrainCancer Initiative urges all Americans to recognize and act in support of this inaugural GBM Awareness Day. The resolution was led by Senator Lindsey Graham (R-SC) and received bipartisan cosponsorship from Senators Edward Markey (D-MA), Elizabeth Warren (D-MA), Kyrsten Sinema (D-AZ), Martha McSally (R-AZ) and Senate Majority Leader Mitch McConnell (R-KY). The EndBrainCancer Initiative (EBCI) proudly endorsed and helped to advocate for passage of this resolution, working with the National Brain Tumor Society (NBTS) and other advocacy and research organizations/foundations such as the American Brain Tumor Association (ABTA), International Brain Tumor Alliance (IBTA), Society for Neuro-Oncology (SNO), Glioblastoma Foundation, Ivy Foundation, Musella Foundation, and others. The U.S. Senate was directly impacted by GBM as Senator Graham publicly commented, “Glioblastoma is a devastating […]
Thank you so much for your interest in submitting your story for my collaborative book. First, let me tell you more about myself and my mission and purpose for this book. In my daily life, I am the co-founder, President and Chair of the EndBrainCancer Initiative (formerly the Chris Elliott Fund) www.EndBrainCancer.org. My late husband, Chris Elliott, and I formed this organization 17 years ago to specifically assist brain tumor/brain cancer and patients with brain mets to work with specialists, encourage them to have their tumor tissue saved and comprehensive genomic testing done on that tissue to inform and increase effective personalized treatment options as well as to improve health policy and increase immediate access to effective treatment options. It has been a rough road to financially support all of these efforts via programs and services that are free to the patient/caregiver and the families we serve as well as amazingly empowering to know you are helping others as well as changing policy for all cancer patients. Fast Forward: While editing and writing a chapter for the bestselling book by author and life coach Lisa Reck, Breaking Through the Storm, I had one of those “aaha” moments and realized that perhaps the […]
The End Brain Cancer Initiative connects brain tumor patients, caregivers and their families immediately to advanced treatments & clinical trials. Connecting to: 1) TOP Brain Tumor Neurosurgeons, Neuro-oncologists and Specialists in the U.S.; 2) Immunotherapy Vaccines; 3) 2nd, 3rd, 4th opinions; 4) Genomic Profiling/DNA Sequencing; 5) MGMT and Protein Testing
Our focus is survivorship. Everything we do and advocate is focused on that goal.
We are Here to Talk and Answer Questions: It begins with a conversation. We are here for you to listen and advise you if you have been diagnosed with brain cancer. Our care coordinators standing by to take any of your questions or concerns.
Personal Review of Your Case: Review your case with the End Brain Cancer Medical Advisory board
Ongoing Review: Personal review of your case and any MRI or pathology reports
Help You Network with Others: We put patients and caregivers in touch with other families and survivors who are going through or who have gone through the same thing
Ongoing Support: We help talk with patients and caregivers about how the disease can progress and answer questions
Connecting You Rapidly to Specialists and Cancer Centers: We connect patients with advanced brain tumor treatment centers and specialists. We get the patient medical records in front of other specialists to get first, second, third and fourth opinions.
Connecting you to Top Neurosurgeons: We connect patients to neurosurgeons who can and do operate even when the patient was told the tumor was inoperable.
Access to New & Promising Treatment Approaches: We provide specialists a platform to get in front of other professionals, patients, caregivers, families, etc. to talk about their research or the latest treatment they are able to offer.
Make Appointments: Make appointments and facilitate communication between local medical team and brain tumor specialists.
Insurance Help: Assist with insurance questions
Financial Advice & Resourcing: Find resources to help with financial concerns
Informing Patients: We provide you with the latest information on Brain Tumor Research, including free publications from Chris Elliott Fund and other Brain Tumor related organizations.
Supporting Family & Caregivers: We work with your family and caregivers to inform and support them
Empowering You to Access the Best Specialists: We Provide patients and caregivers the educational materials and questions to ask of their doctors to make sure they are being seen by a top specialist as well as what to demand from their neuro-surgeon, pathologist, radiologist and neuro-oncologist/Oncologist in order to be eligible for advanced treatments, clinical trials, DNA sequencing, genomic profiling, MGMT testing as well as protein testing. All this data supports research but with top specialists, this data helps the specialist identify the treatment option that the patient is most likely to respond to = Personalized Medicine based on the molecular profile of the tumor + makes Immunotherapy, Vaccines and other clinical trials available to P/C.
Helping You Become a Rockstar Advocate: We will walk with you as you yourself advocate for your own health and treatment. It can be a huge challenge to advocate for your own treatment with medical professionals. We are here to equip you to do just that.
Helping You Work with Insurance: We know how to work with your insurance. We will work on your behalf with insurance companies as well as partner with other advocacy organizations, such as Patient Advocate Foundation and Cancer Legal Resource Center, to meet your needs.
