Brain cancer advocacy in action – cancer neuro physiotherapy melbourne health

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 neuro physiotherapy melbourne 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 neuro physiotherapy melbourne and how people affected by brain tumors can advocate for neuro physiotherapy melbourne themselves and their community.

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 neuro physiotherapy melbourne 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 neuro physiotherapy melbourne 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 neuro physiotherapy melbourne for patients and families.

• the palliative care and hospice education and training act (PCHETA) would increase the availability and quality of care by establishing neuro physiotherapy melbourne palliative care and hospice workforce training programs, creating a national education and awareness campaign about the benefits neuro physiotherapy melbourne 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 neuro physiotherapy melbourne year’s head to the hill.

Head to the hill is an opportunity to mobilize and neuro physiotherapy melbourne unite a major grassroots base of volunteer brain tumor advocates neuro physiotherapy melbourne and bring them to our nation’s capital to raise the voice of the brain tumor neuro physiotherapy melbourne community—our needs, challenges and asks. We educate members of congress on the policy issues that neuro physiotherapy melbourne 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 neuro physiotherapy melbourne 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 neuro physiotherapy melbourne 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 neuro physiotherapy melbourne 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 neuro physiotherapy melbourne help advocates who want to participate, but maybe don’t have the means, apply for financial support to attend.

We are in the final year of funding for both neuro physiotherapy melbourne 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 neuro physiotherapy melbourne science and data sharing that advances discoveries from the laboratory neuro physiotherapy melbourne 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 neuro physiotherapy melbourne the 140-plus brain tumor types. Our current two community research funds are focused on oligodendroglioma neuro physiotherapy melbourne 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 neuro physiotherapy melbourne for patients because the status quo clinical trial system is neuro physiotherapy melbourne not producing results fast enough. GBM AGILE will ultimately be an international clinical trial that neuro physiotherapy melbourne 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 neuro physiotherapy melbourne patients more quickly.

Our sole focus and objective when it comes to massive neuro physiotherapy melbourne programs like those created via the ACA and medicare is neuro physiotherapy melbourne to ensure brain tumor patients have affordable access to the neuro physiotherapy melbourne care they require. In 2011 and 2012, when the ACA was in the process of being rolled neuro physiotherapy melbourne 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 neuro physiotherapy melbourne arise or are brought to our attention by the community. For example, we support legislation that would require all ACA plans to neuro physiotherapy melbourne 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 neuro physiotherapy melbourne 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 neuro physiotherapy melbourne advocated against a proposed rule this year that would have neuro physiotherapy melbourne 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.

Mainly through legislation and public policy but also through education neuro physiotherapy melbourne on how best to navigate the system and what financial neuro physiotherapy melbourne resources exist to help patients. While we don’t provide individual grants or gifts, we direct people to organizations that do help in that neuro physiotherapy melbourne realm as well as offer information on how to access neuro physiotherapy melbourne a drug company patient assistance program when needed.

There’s public policy advocacy, and there’s personal advocacy. Personal advocacy is really about speaking up for yourself during neuro physiotherapy melbourne your treatment experience and playing a more active role in neuro physiotherapy melbourne 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 neuro physiotherapy melbourne to take on this role of being their own best neuro physiotherapy melbourne 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 neuro physiotherapy melbourne to appointments to make sure they remember to get all neuro physiotherapy melbourne of their questions answered. Similarly, we also offer a mygraymatters notebook—which is also downloadable and contains a symptom tracker template neuro physiotherapy melbourne as well as templates for lists of medications and supplements neuro physiotherapy melbourne to help patients stay organized and manage their prescription and neuro physiotherapy melbourne self-administered treatment needs and schedule.

We also host webinars and take calls regularly from patients neuro physiotherapy melbourne and families looking for help and support navigating a diagnosis neuro physiotherapy melbourne and treatment. We’ve done surveys seeking information from patients and care partners neuro physiotherapy melbourne about symptoms and things that matter most to them when neuro physiotherapy melbourne 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 neuro physiotherapy melbourne evaluate treatments that impact a patient’s symptoms, signs, and function.

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