The election earlier this month surprised almost everyone. People across the country have since been adjusting both intellectually and emotionally as we move toward a Trump administration and Republican control of both the House and Senate. The shock waves in Washington have been especially seismic, with policymakers recalibrating – and recalculating - how to position themselves and their agendas.
The same is true for advocates committed to battling childhood cancer. While the goals of developing better treatments, access to care and quality survivorship remain, the outcome of the election changes many of the strategies and approaches.
One thing is certain, however: Families and patients dedicated to the fight will need to be even more focused, engaged and vocal. CCCA will be aggressively targeting any threats to the welfare of our kids and, as always, alerting advocates when they need to make their voices heard.
But before a new Congress and Administration take over in January, there is some urgent unfinished business in the current ‘lame-duck’ Congress. (All pending legislation dies at the end of two-year Congress and has to be start over.) These are especially critical to childhood cancer advocates – and everyone will need to make their voices heard in the next couple weeks.
Since last year the childhood cancer community has been unified in its support of the Survivorship, Treatment, Access and Research (STAR) Act, generating some 270 cosponsors and most of the all-important House Energy & Commerce Committee. CCCA was involved in the initial drafting of the bill and strongly supports its passage. If the House can pass the bill, Senators Reed (D-RI) and Capito (R-WV) have been laying the groundwork to move it quickly through the full Senate. The childhood cancer community is now planning a social media day to get the bill across the goal line. Stay tuned to fire up your Facebook and Twitter networks!
The other high-profile item left for this Congress is legislation known as 21st Century Cures. In debate over the past year, the bill is intended to help bring drugs to market more quickly by making reforms to the FDA, increasing patient involvement in the drug approval process, and the promise of more funding. Those dollars would include $4.8 billion for the National Institutes of Health, $1.8 billion for the Cancer Moonshot to speed cancer research, and $1.5 billion for the Precision Medicine Initiative – all of which would support pediatric cancer research and clinical trials.
That funding, however, is tied up with the largest item on Congress’ ‘to-do’ list – the federal budget for fiscal year 2017. Congress never completed work on a full year budget for the year, that began on October 1. Instead, they passed a temporary stop-gap measure that expires on December 10 – simply continuing current funding levels. Instead of passing a budget for the balance of the year, the new Administration has requested another temporary measure – known as a ‘continuing resolution’ - that would run until March 31, 2017 while the new Congress can decide on its priorities. This is not the best scenario for federal agencies like NIH and the FDA. Agencies, like companies, need some predictability to project future program needs; especially when it’s for multi-year research grants.
That brings us to preparation for the coming year and the environment for childhood cancer policy. The new Administration and Congress bring with them a great deal of uncertainty, and pediatric cancer advocates will need to be vigilant in defending treatments for our kids. Funding for pediatric cancer research is one issue, as is the Administration’s vow to repeal and replace the Affordable Care Act (ACA), as well as the block-grant funding of Medicaid, which could leave many childhood cancer families vulnerable to higher out-of-pocket costs.
CCCA is building its 2017 agenda on making sure that policies promote the development of better treatments, provide access for patients and improve the lives of survivors. More importantly it’s in making sure your voice is heard in delivering on that agenda. Now more than ever, families and patients will need to get involved. We want to help you do that. Join the Kid’s Action Network and be kept informed of new developments and make your voice heard.