May 2017: Updates from Washington

The Latest in Washington: Healthcare & Budget News

There's a lot of policy activity happening in Washington with the potential to have a big impact on children with cancer. We're monitoring these issues closely - notably, the American Health Care Act and the president's budget proposal - and working with allied coalitions to express the needs and priorities of children with complex medical conditions like pediatric cancer.

The American Health Care Act, as passed by the House of Representatives earlier this month, would roll back the pre-existing condition protections that families have come to rely on since the enactment of the Affordable Care Act. This bill would bring the return of costly, limited high-risk pools and lifetime caps on coverage. The legislation also includes significant cuts to Medicaid, which insures approximately one-third of children with cancer in this country. Read more on our blog.

We are sharing testimonials on social media from families who are anxious about what AHCA could mean for their child battling cancer, with the hashtags #LetMeGrowUp and #ProtectOurCare. Find out how to take part in several ongoing social media campaigns here.

In other news, President Trump recently submitted his budget proposal to Congress, which calls for big cuts to medical research and health insurance for low-income children. Of particular concern are the threats to Medicaid and the Children's Health Insurance Program (CHIP). Together, Medicaid and CHIP cover nearly half of children age 6-and-under, including thousands of children with cancer.

The president's budget also calls for $6 billion in cuts to the NIH, including $1 billion from the National Cancer Institute. It is critical to note that Congress, not the president, controls the federal budget -- and medical research continues to receive bipartisan support in Congress. In fact, Congress just added $2 billion to the NIH budget for the remainder of this fiscal year (ending September 30). Read more on our blog.

200 Attend Childhood Cancer Action Days

Approximately 200 childhood cancer advocates took to Capitol Hill for this year's Alliance for Childhood Cancer Action Days at the beginning of May. Attendees spent a full day receiving issues and advocacy training, followed by a busy day of meetings with Members of Congress and their staffs. Advocates focused on three key issues this year: the STAR ActNIH funding, and the RACE Act

We were proud to be part of this annual event and thank all the attendees for their dedicated advocacy efforts, including those who joined in virtually by writing, tweeting or calling their Members of Congress.

- News coverage: 8-Year-Old Cancer Survivor Fighting for More Childhood Cancer Research

Next week, we'll be taking part in the One Voice Against Cancer lobby day -- follow along on FacebookTwitter or Instagram!

Financial Impact of a Childhood Cancer Diagnosis

On our latest advocacy webinar, we delved into the topic of treatment-related financial hardships facing families with a childhood cancer diagnosis. Among the key points we learned from research experts Kira Bona (MD, MPH), Anne Kirchhoff (PhD, MPH) and Elyse Park (PhD):

- 1 in 5 children diagnosed with cancer were already living in poverty. Among the families who were not poor at the time of diagnosis, 10-15% became poor during treatment for their child's cancer.

- Childhood cancer survivors are more likely to be covered by Medicaid than their siblings, more likely to have a history of being denied health insurance because of their cancer treatment, and they spend a greater percent of their income on medical expenses. Over half of adult survivors in one study reported skipping recommended medical care in the past year.

- Young adult survivors - especially uninsured survivors - lack needed familiarity with the Affordable Care Act and other available insurance protections.

A more detailed summary and the webinar recording are available here.

Research News Round-Up

Precision Medicine Breakthrough: Keytruda Approved by FDA

In a groundbreaking research development this month, the Food and Drug Administration approved Keytruda, the first ever cancer therapy based on a patients' specific genetic traits, rather than cancer type. This approval includes children with the identified genetic trait whose cancer has progressed and who have no alternative treatment options. This is a huge leap forward for the field of precision medicine, which uses a patient's genetic makeup to deliver immuno-targeted therapy.

Find additional recent research developments on our blog.

Jessica Kean