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As the situation reached crisis level, legislators arranged a hearing to address the problem — and a staff member from Sen. Robert P. Casey Jr.’s office picked up the phone and called Peter Grollman, vice president of Government Affairs, Community Relations and Advocacy at The Children’s Hospital of Philadelphia. Could he recommend a CHOP expert who could provide expert testimony on the issue?
Pharmacist Shannon Lewis, Pharm.D., worked with physicians to come up with alternatives when daunorubicin (shown above) wasn’t available due to a shortage.
A few weeks later, on Dec. 15, 2011, John M. Maris, M.D., director of CHOP’s Center for Childhood Cancer Research, testified before the U.S. Senate Committee on Health, Education, Labor and Pensions (HELP), painting a vivid picture of the devastating impact drug shortages can have. Maris talked about how, for six weeks the previous summer, CHOP was unable to obtain daunorubicin, a drug that is part of the standard of care for leukemia patients.
“This drug is a big part of why we can offer curative approaches to the majority of patients,” he said. “We were forced to use the drug doxorubicin as a replacement … While it is too soon to know if the substitution impacted the curability of these children, we noted more side effects.”
CHOP’s advocacy didn’t end there. Several other CHOP physicians also offered expert testimony in support of key legislation last year, including Stephan A. Grupp, M.D., Ph.D., director of translational research for the Center for Childhood Cancer Research, who spoke to the Pennsylvania State Senate Majority Policy Committee about how important state funding has been to his pioneering leukemia research, and Flaura K. Winston, M.D., Ph.D., founder and scientific director of the Center for Injury Research and Prevention, who emphasized to the U.S. House of Representatives Energy and Commerce Subcommittee on Health the need to find better ways to prevent and treat traumatic brain injuries.
Clinicians have a powerful impact in legislative forums, says Grollman, “because they’re on the front lines. Dr. Maris is at the bedside when a drug he needs for a child isn’t available. Dr. Grupp is using state funding to advance groundbreaking research. Dr. Winston is connecting because she’s a national expert on trauma.”
CHOP doctors’ ability to educate and motivate makes them a trusted resource for legislators, who often turn to them for information on children’s health issues. It’s a relationship that has the power to create lasting and far-reaching change.
“Expert witnesses such as Dr. John Maris are crucial for the legislative process, providing Congress with critical insight into the problems we seek to address through federal legislation, and I am grateful that there are so many talented individuals I can call on in Pennsylvania.”
Sen. Robert P. Casey Jr.
In remarks recognizing the importance of passing the National Pediatric Research Network Act, legislation that will help accelerate the development of cures for pediatric diseases, Rep. Joseph R. Pitts of Pennsylvania, chairman of the U.S. House of Representatives Energy and Commerce Subcommittee on Health, said in the Congressional Record, “Through my association with Children’s Hospital of Philadelphia, I’m aware that there are too many diseases that children and their families face that do not have easy answers, and few adequate treatments. This bill will strengthen basic and clinical research and bring us closer to finding new treatments and cures.”
Learn more about the Office of Government Affairs, Community Relations and Advocacy.
