Children with Cancer Take to Capitol Hill
Patients, survivors, and families ask Congress to help children battle cancer

Advocacy DayMore than 150 childhood cancer patients, survivors, and their families were on Capitol Hill on Tuesday, June 18 to ask Congress to continue to support initiatives that can improve research, treatment and outcomes for children with cancer. As part of the second annual Childhood Cancer Action Day event, the Alliance for Childhood Cancer – of which CureSearch is a member - coordinated this day in an effort to advance important legislation that will benefit the 13,500 children newly diagnosed with cancer each year and the 360,000 survivors of childhood cancer in the U.S.

"Families from 31 states, each of whom is armed with deeply personal experiences that inspired them to travel to Washington, came to town to ensure that Congress understands the importance of supporting children with cancer and their families," said Karen McKinley, PsyD, LCSW, co-chair of the Alliance for Childhood Cancer. In all, advocates ranging in age from 4-70 met with their Congressional Representatives and asked them to support the following bills:

  • H.R. 460, Patients Access to Treatments Act
    This legislation would require insurers to charge no more than what they currently charge for non-specialty tier brand drugs. For example, if an insurer is currently charging $30 for non-specialty tier brand drugs, and 50% of the price of a specialty drug (e.g. for a $7,000 drug like Gleevec, $3,500 patient out of pocket), HR 460 would require the insurer to charge no more than $30 for specialty drugs.
  • Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act
    Developed by Senator Jack Reed (D-RI) and Rep. Chris Van Hollen (D-MD), this bill would expand research of childhood cancers, improve efforts to identify and track childhood cancer incidences, and identify opportunities to expand the development and research of therapeutics necessary to treat children with cancer.
  • H.R. 2058, Childhood Cancer Survivors' Quality of Life Act
    Introduced in the House by Rep. Jackie Speier (D-CA) on May 20, 2013, this legislation will provide resources for research and survivorship programs to improve the quality of life for all childhood cancer survivors, increase access to the long-term comprehensive health care services they need, and enhance understanding of the late effects of their childhood diseases and cancer treatments.

Advocates also asked for continued funding for the National Cancer Institute and its investments in childhood cancer research, which is critical to identifying new treatments and completing ongoing clinical trials. Further, they invited members of the House of Representatives who have not already done so to join the bipartisan Congressional Childhood Cancer Caucus to help advance legislative efforts to eliminate cancer as a threat to all children.

"We’re excited not only about the day, but about the potential these bills have to make a difference in the lives of the 40,000 children who undergo cancer treatment each year," says Maureen Lilly, co-chair of the Alliance for Childhood Cancer. "We know that through these visits and the grassroots efforts of those who were unable to travel to join us in person, we can demonstrate to Congress the power they have to make a difference in the lives of children with cancer, now and into the future."

Advocacy Day 

Christine Bork
Email Christine
(800) 458-6223

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