The National Brain Tumor Society (NBTS), founded in 2008, advocates for the brain tumor community. To learn more about the challenges people with brain tumors face and how NBTS works to help, Cancer Health spoke with senior manager of communications Tom Halkin. He told us about the group’s signature advocacy event, Head to the Hill, as well as some of the research projects it funds and how people affected by brain tumors can advocate for themselves and their community.
Cancer Health: What are some common challenges people with brain tumors experience?
Tom Halkin: Brain tumors, whether malignant or benign, can be life-threatening. It’s been estimated that some 50% of brain tumor patients will also experience progressive brain disease that triggers a host of neurological health problems. Many will lose the ability to work and even drive. The disease can also take away one’s independence and sense of self. This means people will require an enormous spectrum of specialty care from the time of their diagnosis through surgery, active treatment, rehabilitation and the remainder of their life. These can be extremely costly and cause significant financial distress for patients and families.
NBTS helps tackle these issues through a number of initiatives within our integrative programs.
Through advocacy, we support a number of policies that would take important steps to improve the experience that patients and families dealing with a brain tumor diagnosis face:
- We’ve sought to ensure that the types of care brain tumor patients need are covered in the essential health benefit categories of the Affordable Care Act (ACA) and that preexisting conditions and lifetime cap protections remain in any future national health care policy.
- We helped draft and champion the Childhood Cancer STAR Act, which, in part, studies survivorship care for children diagnosed with brain tumors and other cancers.
We support making the following legislation law:
- The Cancer Treatment Parity Act would ensure equality of insurance coverage for all cancer treatments, regardless of how these treatments are administered.
- The Clinical Treatment Act would guarantee coverage of the routine care costs of clinical trial participation for Medicaid enrollees with a life-threatening condition.
- The Palliative Care and Hospice Education and Training Act (PCHETA) would increase the availability and quality of care by establishing palliative care and hospice workforce training programs, creating a national education and awareness campaign about the benefits of palliative care and available services and supports, and enhancing research on improving the delivery of palliative care. In addition to funding for medical research, passing PCHETA was one of our two asks at this year’s Head to the Hill.
Tell us about Head to the Hill. What’s its history? How has it changed over the years?
NBTS recognized the need to have a strong public policy advocacy presence on Capitol Hill and hosted the first Head to the Hill in 2012. It’s our signature advocacy event.
Head to the Hill is an opportunity to mobilize and unite a major grassroots base of volunteer brain tumor advocates and bring them to our nation’s capital to raise the voice of the brain tumor community—our needs, challenges and asks. We educate members of Congress on the policy issues that matter to brain tumor patients, survivors, care partners, their families and loved ones, as well as researchers and doctors in this field.
It’s held annually on the first Sunday through Tuesday in May, which is Brain Tumor Awareness Month in the United States. That Sunday morning we also hold our biggest fundraising event, Race for Hope–DC. There’s an all-day training session on Monday to get the advocates prepared, followed by meetings with congressional offices on Capitol Hill on Tuesday.
Since 2012, the event has grown exponentially. In 2019, we had more than 300 advocates from 34 states. We now regularly feature prominent speakers—from members of Congress and their legislative staff to leading researchers and officials at the National Cancer Institute (NCI)—as part of training. Other brain tumor nonprofit groups join us. The event also attracts generous sponsors, which has allowed us to begin a scholarship program to help advocates who want to participate, but maybe don’t have the means, apply for financial support to attend.
NBTS funds a lot of research. Are there any initiatives you’d like to highlight?
Through research, we’ve funded efforts like the International Low Grade Glioma Registry which, in part, is tracking the effects of low-grade gliomas and subsequent treatments on patients’ daily life—such as the ability to work, drive, sleep, exercise or take care of oneself and/or family.
We are in the final year of funding for both a major research initiative in adult high-grade gliomas, the Defeat GBM Research Collaborative, and one for pediatric high-grade gliomas, the Defeat Pediatric Brain Tumors Research Collaborative. These efforts connect teams of world-class researchers in a tightly integrated consortium to practice team science and data sharing that advances discoveries from the laboratory toward clinical trials. We also have two community research funds—initiatives driven by a community of advocates, donors and fundraisers—that share a common interest in research into one of the 140-plus brain tumor types. Our current two community research funds are focused on oligodendroglioma and on meningioma.
We’re playing a major role in funding the soon-to-be-launched GBM AGILE clinical trial. This is the brain tumor world’s first adaptive trial platform, much like the I-SPY trials that have revolutionized breast cancer clinical research. Our investment in and support of GBM AGILE is important for patients because the status quo clinical trial system is not producing results fast enough. GBM AGILE will ultimately be an international clinical trial that tests multiple drugs in numerous different treatment arms simultaneously. The effect is to speed up results, with the aim of making more effective treatments available to patients more quickly.
Moving forward, NBTS will begin to shift our strategic research programs toward supporting more proactive treatment development, fostering the development of novel approaches to treatments that can be evaluated in clinical trials like AGILE.
What changes would NBTS like to see in the Affordable Care Act (ACA)? In Medicare?
Our sole focus and objective when it comes to massive programs like those created via the ACA and Medicare is to ensure brain tumor patients have affordable access to the care they require. In 2011 and 2012, when the ACA was in the process of being rolled out, we weighed in heavily on essential health benefits, preexisting conditions and lifetime caps. In 2017, during the debate over repealing and replacing the ACA, we stepped up to defend those same provisions.
Beyond that, we tackle issues within the health care system as they arise or are brought to our attention by the community. For example, we support legislation that would require all ACA plans to cover treatment received at an NCI-designated cancer center. Because brain tumors are relatively rare, as well as very complex, medical conditions, patients really benefit from seeing care teams that truly specialize in brain tumors and treat these diseases regularly. Being able to access care at NCI-designated cancer centers is critical.
On the Medicare side, we were actually just part of a large coalition that advocated against a proposed rule this year that would have made changes in Part D that impacted patients’ timely access to drug therapies within the six protected classes. We were happy to learn earlier this month that, in their final rule, CMS did not finalize these changes.
How is NBTS tackling financial toxicity issues?
Mainly through legislation and public policy but also through education on how best to navigate the system and what financial resources exist to help patients. While we don’t provide individual grants or gifts, we direct people to organizations that do help in that realm as well as offer information on how to access a drug company patient assistance program when needed.
How can people affected by brain tumors advocate for themselves or their loved ones? What resources does NBTS offer to help them?
There’s public policy advocacy, and there’s personal advocacy. Personal advocacy is really about speaking up for yourself during your treatment experience and playing a more active role in your care and the decision-making process. Through our Brain Tumor Experience resources (including our NBTS Clinical Trials Finder) and several soon-to-be-announced new initiatives, we continue to try and educate patients and empower them to take on this role of being their own best patient advocate. For example, our Brain Tumor Experience resources include “Questions to Ask Your Doctor” for each step of the journey. Patients can download these lists and bring them with them to appointments to make sure they remember to get all of their questions answered. Similarly, we also offer a MyGrayMatters Notebook—which is also downloadable and contains a symptom tracker template as well as templates for lists of medications and supplements to help patients stay organized and manage their prescription and self-administered treatment needs and schedule.
We also host webinars and take calls regularly from patients and families looking for help and support navigating a diagnosis and treatment. We’ve done surveys seeking information from patients and care partners about symptoms and things that matter most to them when it comes to treatment and medicine. We’ve hosted workshops with leaders across the neuro-oncology landscape and the U.S. Food and Drug Administration to discuss clinical trials that would evaluate treatments that impact a patient’s symptoms, signs, and function.
In June, we’ll be launching a brain tumor support conversations platform.
What kind of progress has NBTS seen on its policy and research goals over the years? What about your work gives you hope?
We are seeing the field grow in leaps and bounds, and we like to say that we’ve made more progress against this disease in the past 10 years than we had in the previous 100 years combined.
A look at some of the numbers tells the story of how far we have come, even if we do have a long way to go to meet our vision of conquering and curing brain tumors once and for all:
- The main professional organization for the field, the Society for Neuro-Oncology (SNO), held its first-ever meeting in 1995. It was attended by just 18 people. SNO’s most recent Annual Meeting in November 2018 had more than 2,400 participants.
- The amount of federal funding for brain cancer research through the National Institutes of Health has risen from $280 million in fiscal year 2011 to an estimated $337 million in fiscal year 2019.
- NBTS-supported laws like the Childhood Cancer STAR Act, the 21st Century Cures Act (including the Cancer Moonshot) and the RACE for Children Act all contain provisions to improve oncology—including brain-tumor—research and development.
- NBTS public policy advocacy has also helped realize an additional stream of federal funding for brain tumor research through the Department of Defense’s Peer Reviewed Cancer Research Program.
- We’re proud and excited toseethatNBTS-funded research has begun to bear fruit in the form of potential new treatments now being evaluated in clinical trials. A number of therapies actively in clinical trials are the product ofresearchthatNBTS had originally helped seed and/or fund. These include:
- the gene therapy Toca 511 & Toca FC that is currently in late-stage clinical trials for high-grade glioma patients
- the oncolytic virus DNX-2401 that’s being tested as a potential new treatment for glioblastoma patients
- the reengineered oncolytic virus poliovirus (PVSRIPO) that’s received a lot of national attention and is now in mid-stage clinical trials for glioma patients
- the vaccine-based immunotherapy SurVaxM that’s in mid-stage clinical trials for glioblastoma patients.
To view a more comprehensive progress report, visit our site, where you can also find more ways to get involved, such as receiving our newsletter, following us on social media, donating and signing up to become an advocate.
To learn more about brain cancer, click here.
To read Adam Hayden’s blog about living with glioblastoma on Cancer Health, click here.
To go to the NBTS website, click here.