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Speaking Up for Brain Tumor Causes: Busy Two Weeks in the Nation’s Capital

Published on May 8, 2017 in Legislative Issues, Take Action

Last week, we had some good news…and some not so great news…from our nation’s capital, as it pertains to public policy measures that could affect brain tumor patients.

The U.S. Capitol Building, home to Congress

First, the bad news. Today, the U.S. House of Representatives passed the American Health Care Act (AHCA) by a slim margin – 217 members voted in favor, and 213 opposed the bill. Because this legislation – in its current form – makes changes to a number of protections for patients, including continuity of coverage and the certainty of no denial-of-coverage based on pre-existing conditions, we were opposed to the passage of the legislation as it stands. However, the bill now goes to the Senate where it is expected that either a new bill will be written or substantial change will be made to the current version.

We issued this statement urging members of the Senate to work together to amend the bill in ways that address the needs of brain tumor patients and survivors. To see a more comprehensive example of what NBTS would like to see in any updates to our national healthcare policy, you can check-out this letter (PDF) we sent to leaders in Congress earlier this year.

> View Senate office contact information if you want to contact your senators about this legislation

Now, onto the good news.

At about the same time the House was voting on the AHCA, the Senate was taking-up the budget and appropriations (spending) bill, known as an “omnibus,” for Fiscal Year 2017 (FY17 runs until September 30, 2017). This bill, officially known as “The FY17 Omnibus Appropriations Act,” or the “Consolidated Appropriations Act, 2017,” had previously been passed by the House earlier this week. And, to our delight, the Senate followed suit on Thursday, sending this budget and spending bill onto the president for his signature. President Trump signed the bill on Friday, May 5.

Why is this good news?

For years, Congress had been either “flat-funding” (keeping levels the same year-after-year) or cutting the budget for the National Institutes of Health (NIH), the biggest funders of brain tumor research in the world. Taking inflation into account, this had resulted in the agency losing roughly 25% of its spending power since 2003 and only being able to fund about one out of every five grant applications from biomedical researchers. But, finally, at the end of 2015 Congress passed a budget for Fiscal Year 2016 (FY16) that gave the NIH it’s biggest funding increase in 12 years.


This important increase in funding for research, came, in no small part, as the result of our ever-growing base of volunteer brain tumor advocates from across the country who took part in NBTS Action Alerts, Head to the Hill, and other opportunities for advocacy.

Yet, progress toward continuing to increase NIH’s budget was stalled when FY16 ended this past September (9/30/16). A divided Congress and Administration, in the midst of an election year, failed to come to a comprise on a full omnibus for FY17, so they passed what is known as a “Continuing Resolution” or “CR.” The CR kept all the government agencies, institutes, and programs funded by simply “continuing” the funding levels from FY16. This was an “OK” outcome for brain tumor advocates, because it did maintain the new, increased funding levels from FY16. Yet, it was not ideal, because it did not allow advocates to seek another increase for NIH to keep the momentum going.

Which, thankfully, brings us to today.

The omnibus is full of good news for brain tumor advocates. The final bill includes $34.084 billion for the NIH, an increase of $2 billion (6.2 percent) over FY16. This amount includes $352 million in funding from the 21st Century Cures Act that was included in the FY 17 Continuing Resolution that was passed in December. Included in the $34.085 billion, is also $5.589 billion for the National Cancer Institute (NCI), an increase of nearly $476 million (9.1 percent) over FY16. This amount includes $300 million from 21st Century Cures specifically to support the Beau Biden Cancer Moonshot Initiative. Finally, the omnibus also includes a $10 million increase for the Department of Defense’s (DoD) Peer-Reviewed Cancer Research Program (PRCRP), bringing the funding level to $60 million, and makes both adult and pediatric brain tumors topics eligible for funding under that program – another NBTS advocacy priority.

Again, this good news is a testament to the dogged, determined efforts of volunteer brain tumor advocates who spoke up for more research funding. When the White House made notice to Congress that it wanted a $1.2 billion cut to the NIH in FY17, our subsequent Action Alert was taken by more of you than any prior alert in more than six months.


We should celebrate this success. Again, after years of flat-funding and cuts, this is now two-consecutive Fiscal Year budgets with significant increases to research funding that will benefit the brain tumor community and our collective mission.

That said, we do – and will – have to get back to work quickly. With this FY17 budget coming in so late in the fiscal year, we don’t have much time to wait to begin advocating for our asks in FY18. And we’ll be doing just that – along with asking for Congress to pass the Childhood Cancer STAR Act – when we’re on Capitol Hill this coming Tuesday (May 9) for Head to the Hill, 2017.

We look forward to seeing many of you there, and for those you can’t make it, remember to look out for how you can you can still be a part of Action Day on May 9 in your home state. Keep an eye out for an email with instructions on how you can call, email, or tweet your Members of Congress in support of medical research funding. Your outreach goes great lengths to strengthen and amplify the message the advocates in D.C. will be delivering in person. It will further show members of Congress that their constituents are passionate about this cause. We’ll give you everything you need to participate, including sample scripts and background information on the policy issue.

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