Northwest Indiana Cancer Kids Foundation, recently participated in this year’s Childhood Cancer Action Day in Washington, DC on Jun. 18.
Members of the Alliance for Childhood Cancer hosted a two-day event that included issues, advocacy training, and pre-arranged Capitol Hill visits with Congressional representatives and their staff.
The event was intended to provide the childhood cancer community with an opportunity to visit Capitol Hill and advocate for important childhood cancer issues currently before Congress.
Tuesday, Jun. 18 mothers from Griffith, Ind. and Valparaiso, Ind. visited Washington, DC. Stephanie Shelbourne, Rebecca McCarty, and Sara Wuenn whose children Adler, Miranda and Liam lost their lives to childhood cancer joined more than 150 cancer patients, survivors and family members and petitioned congress to continue support initiatives that could improve treatment for children with cancer.
The mothers that spoke on behalf of the NICK Foundation felt that participating in the event was particularly important. Treatment that could have saved the lives of 3-year-old Adler and 14-month-old Liam was not available. For Miranda, there was lack of less toxic chemotherapy treatment which depleted her immune system leaving her vulnerable to infection which ultimately took her life.
“These 3 amazing women went to Capitol Hill in hopes that their stories would touch the hearts of those who make funding decisions. Saving another child due to their efforts is a goal for many parents of kids with cancer,” says Donna Criner, director of The NICK Foundation.
In the second annual Childhood Cancer Action Day event was coordinated in an effort to advance important legislation that will benefit the 13,500 children diagnosed with cancer each year. Families from 31 states were in attendance. Each with a deep personal connection to this disease which inspired them to meet with their Congressional Representatives and ask them to cosponsor the following Acts.
The Patients Access Act would require insurers to charge no more than what they currently charge for non-specialty tier brand drugs. H.R. 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) to expand the 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, 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.
Each of these pieces of legislation has the power to make a difference in the lives of the 40,000 children treated for cancer each year. “That’s why we went. To encourage that Congress does everything in its power to help the kids who are fighting cancer each and every day,” said Criner.
Northwest Indiana Cancer Kids Foundation provides assistance and counsel to families in the Northwest Indiana and Chicagoland areas affected by pediatric cancer. Contact Criner at (219) 765-7677 or info@nwicancerkids.org.