A look back at 2019: A year of policy progress
Cancer Survivor Grace Eline at the President’s State of the Union Address // Photo Credit : Getty Images
Things in Washington were not going well at the start of 2019: A funding stalemate caused a government shutdown that began just before Christmas of 2018 and lasted over a month — the longest shutdown in U.S. history. Cancer organizations like ours were among the many public health groups advocating for a speedy resolution, as the shutdown was causing significant disruptions to federal agencies, especially the FDA and its ability to expedite lifesaving therapies to patients in need.
Once the government reopened, the policy landscape for the childhood cancer community improved dramatically. At the State of the Union address in February, President Trump announced a $500 million increase in childhood cancer funding over the next decade. In the weeks and months that followed, we learned that this new commitment would become the Childhood Cancer Data Initiative (CCDI).
CCDI is intended to facilitate access to the broadest possible collection of childhood cancer data, utilizing a federal investment of $50 million per year for the next 10 years. Just this month - December of 2019 - we learned that the first year of funding was fully secured for FY2020, empowering CCDI to move ahead with its ambitious slate of plans related to data collection and accessibility.
In April, we celebrated the president signing the ACE Kids Act into law, as part of the Medicaid Services Investment and Accountability Act of 2019. The Advancing Care for Exceptional Kids Act, which took years to get passed, will improve care for approximately two million children with medical complexities in the Medicaid program. The bill provides more consistency for children with medical complexity as they often need to travel across state lines for care, which currently results in coverage issues since Medicaid coverage may differ from state to state. The Children's Cause joined the nation’s leading children’s hospitals, along with the Children’s Hospital Association, in supporting this legislation.
Of course, policy doesn’t just happen on Capitol Hill. We also work to ensure that the needs and perspectives of children with cancer are understood by leaders of federal agencies like the National Cancer Institute and the Food and Drug Administration.
In May, for example, we submitted a formal Voice of the Patient report to the FDA on the topic of chemo-induced hearing loss in pediatrics.
This report grew out of an externally-led Patient Focused Drug Development meeting held in September 2018, a workshop that gave families and survivors a long-deserved spotlight to share their very personal stories about the severe impact that hearing loss has had on their lives.
After a fairly quiet summer and then an action-packed Awareness Month in September (headlined by introduction of legislation to permanently reauthorize the Creating Hope Act), the childhood cancer community found ourselves in crisis mode, as the alarming news hit that pediatric hospitals around the country were facing a shortage of the chemotherapy drug vincristine - an essential component in the treatment of most childhood cancers. The childhood cancer community acted quickly, coming together to speak up for kids who rely on vincristine as part of their treatment protocol.
Our collective voices had an impact: sole supplier Pfizer expedited shipments to hospitals in need, and Teva Pharmaceuticals announced that they will re-introduce vincristine to their supply line in early 2020.
The drug shortage issue is complicated and involves multiple factors such as aging manufacturing facilities overseas and a consolidation of suppliers. There isn’t one simple solution: Preventing future shortages will require a multi-faceted approach.
The Alliance for Childhood Cancer has convened a Working Group on this issue, and Children’s Cancer Cause will continue to work with this and other coalitions in the pursuit of solutions that ensure families in the future are not faced with devastating shortages of drugs needed to treat their child’s cancer.
The vincristine situation caught the attention of lawmakers, too. In late October, the Mitigating Emergency Drug Shortages (MEDS) Act - was introduced. The MEDS Act calls for FDA to speed facility inspections and application reviews for generic drugs in short supply, make bulk manufacturers disclose supply disruptions, direct makers of life-supporting drugs to develop back-up manufacturing plans, and recommend ways Congress could incentivize manufacturers to enter the market to avert shortages. We believe this legislation would help alleviate future drug shortages, including those in pediatrics, and are supporting this legislation. Now you can join in the effort by writing a letter to your Senators using our Action Alert. Take Action →
Also in October, the House passed legislation that would expand access to palliative care and improve the quality of life for millions of Americans, including children with cancer. This legislation (H.R.647) establishes Palliative Care and Hospice Education Centers to improve the training of health professionals, establishes a national campaign to inform patients, families and health professionals about the benefits of palliative care and the services, and directs expanded NIH funds to improve the delivery of palliative care to patients with serious illnesses.
Palliative care is team-based care that helps children with cancer live as comfortably as possible by managing the harsh side effects of their cancer or treatment. Palliative care is different from hospice care; it is available at all stages of treatment and addresses the medical, psychological, social and spiritual needs of the child. Take action to request that your Senators join their House colleagues in supporting palliative care: Write your Senators.
An uncertainty in research funding loomed over the policy landscape for much of the year. Early in 2019, the Trump Administration called for a 17 percent cut in funding for the National Cancer Institute (NCI), which would have had a devastating impact on cancer research and delay progress toward reaching cures. Unsurprisingly, Congress was unable to agree on a Fiscal Year 2020 budget for several months, keeping the government open through Continuing Resolutions at flat-funding levels.
Finally, just before Congress went home for the holidays, we got terrific news: A $1.4 trillion spending deal secured recording funding for the NIH and included funding for implementation of the Childhood Cancer STAR Act. Congress increased the NIH budget by 7 percent above the Fiscal Year 2019 budget, to $41.7 billion for FY2020. The NIH includes the NCI, which supports the Children's Oncology Group - the world's largest organization devoted exclusively to childhood cancer research.
Among the other highlights in the spending bill:
$30 million for implementation of the Childhood Cancer STAR Act;
$50 million for the Childhood Cancer Data Initiative;
$195 million for the Cancer Moonshot research initiative;
$12.6 million for the Gabriella Miller Kids First Research Act.