Rock Legend Roger Daltrey, Lead Singer of The Who and Founder of Teen Cancer America to Join Patients and Advocates for #CuresNow Discussion WEDNESDAY
WASHINGTON, DC – Energy and Commerce Committee Chairman Fred Upton (R-MI) and Rep. Diana DeGette (D-CO) will hold a panel discussion entitled, “Conversation on Child Cures” tomorrow, Wednesday, March 23, 2016, at 9:30 a.m. in Room 2123 of the Rayburn House Office Building.
The “Conversation On Child Cures” will feature patients and advocates, including an 18-year-old young man with cystic fibrosis and parents of children with rare diseases. Roger Daltrey of The Who, and co-founder of Teen Cancer America, will headline the conversation.
Teen Cancer America’s mission is simple – “to educate and support hospitals and outpatient facilities in the development of specialized units for this age group.” The organization recently unveiled a profoundly impactful video featuring teenage cancer patients across all 50 states. While the young adults have varying cancers, and may be in different stages of treatment, there’s one common theme – the lack of teenage specific treatment facilities.
“I didn’t see anybody my age at all actually,” reflects Joey Farrell of Delaware who was diagnosed with medulloblastoma.
Washington’s Anna Stevens with pheochromacytoma lamented, “I wasn’t a toddler. I shared rooms with a lot of toddlers, and I’m 19. And, you know, lots of the doctors there, they’re just like, we don’t know how adult organs work. We know how kid organs work – you’re not a kid.”
University of Michigan Professor Brad Zebrack, PhD, MSW, MPH, highlights the disparity in attention for teen patients, commenting, “We look at adolescents and young adults with cancer, they haven’t benefited in the same way as you know childhood cancer survivors have with the investment and research and investment and resources.”
“It was definitely easier communicating with people your age than it is with like a four-year-old. Which, they’re adorable, but sometimes you don’t feel like coloring Barbie,” said Julia Sanchez of North Carolina who recently lost her battle with rhabdomyosarcoma. “You just want your own space,” adds Hodgkin’s lymphoma patient Lauren Telesz of Connecticut.
But despite the challenges, progress is being made thanks to organizations like Teen Cancer America. Derek Clayton from Indiana who is fighting nasopharyngeal carcinoma sums it up best, “As long as you hope, there’s always a chance for a great outcome.”
Watch Teen Cancer America’s video HERE
Wednesday’s “Conversation on Child Cures” will provide a unique opportunity to hear firsthand the perspective of children and teens battling disease. The patient perspective is critical to the overall 21st Century Cures legislative effort to spur safer cures and treatments for patients, especially children and young adults.
For more information about the event, including a list of participants, click here.