National Brain Tumor Society’s mission is to find better treatments, and ultimately a cure, for all brain tumors. And our interim ‘Big Hairy Audacious Goal’ is to help turn a brain tumor diagnosis into a chronic, manageable disease for all patients by 2025.
As such, the primary focus of our programs — including our public policy and legislative agenda — is funding and advancing research from the lab to the clinic. Thus, when it comes to our advocacy initiatives our work mostly centers on driving legislation, regulations, and other policy-based solutions that will ultimately provide more funding for brain tumor research as well as create the optimal environment to translate and accelerate scientific discoveries into new therapies that receive approval to safe and effectively treat brain tumor patients.
However, as the largest nonprofit patient advocacy organization in the country dedicated solely to the brain tumor community and cause, it is also our inherent responsibility to heed the many other healthcare challenges and issues brain tumor patients and survivors face. This includes access to the cascade of necessary medical care brain tumors patients and survivors will require from the point of diagnosis onward in their journeys. Beyond being mindful, responsive to, and supportive of our community’s needs, ensuring brain tumor patients have affordable access to top-quality medical care is critical to the “real-world” evidence, as well as the ability to participate in clinical trials, that are paramount to new treatment development.
So when the implementation of the Affordable Care Act (ACA) began to take shape in 2013, the National Brain Tumor Society (NBTS) successfully advocated for the inclusion of provisions and so-called, “Essential Health Benefits” packages, that would take into account the unique, specific, and vital healthcare needs of brain tumor patients and survivors.
Notably, recent healthcare policy reforms inaugurated a number of important provisions — in addition to the expansion of coverage — which NBTS believes have been of great benefit to brain tumor patients, survivors and their families. Among them are the principles of: prohibiting denial of coverage based upon pre-existing condition; prohibiting limiting insurance coverage of routine medical care associated with a clinical trial that is federal funded; and placing limits on out of pocket drug costs.
Now, with the current discussions in Congress, NBTS again is insisting that lawmakers in Washington accommodate the vast and costly medical necessities of those directly impacted by this devastating disease. We would expect and hope to see the above noted provisions preserved — or replaced with equitable measures — in any updates, changes, or adjustments to any future national healthcare policies that impact access and coverage for medical care.
We have documented these requests and more in a recent letter to leaders of both parties in Congress. You can read the full letter here to see more of our prescriptions for healthcare policies that meet the needs of brain tumor patients.
David F. Arons, JD
Chief Executive Officer
National Brain Tumor Society