HARRISBURG – February 4, 2019 – State Senator Andy Dinniman was joined by legislative colleagues today to discuss bipartisan efforts to fight pediatric cancer in Pennsylvania.
“Our children are precious in their innocence, their promise, and their resilience and will to live strong, long, healthy and happy lives. But cancer knows no age, race, ethnicity, or income. It strikes across all boundaries,” Dinniman said. “And that’s why we all need to come together and pull together to fight it.”
Dinniman was joined at a special press conference by state Senator Scott Martin and state Reps. Kerry Benninghoff and Tom Caltagirone, as well as Dr. Elizabeth Fox of Children’s Hospital of Philadelphia, and Noelle Weinhold and Travis Cook, who are living with and fighting cancer.
Although cancer in children is rare, it is the leading cause of death by disease past infancy among children in the United States, according to the National Cancer Institute.
Recently, Dinniman reintroduced legislation to improve access to potentially life-saving clinical trials and the related treatment for children suffering from cancer.
“The bELIeve Act” (The Right to Try for Terminally Ill Children Act) calls for requiring insurance providers to cover potentially life-saving clinical trials and the related treatment for terminally ill children.
It was drafted in conjunction with Oxford resident and former borough councilman Paul Matthews of the Eli Seth Matthews Leukemia Foundation after a child suffering from cancer was initially denied access to a potentially life-saving trial drug by their insurance providers because the treatment was out of network. Dinniman and his staff succeeded in having the insurance company quickly reverse its initial denial and cover the necessary treatment. While the young man initially responded well to the trial, sadly he eventually succumbed to the disease. However, the trial treatment allowed his several more precious months with his family and there’s no telling what contribution his participation made to cancer research and the development of a cure.
Last year, Dinniman led the effort to pass Act 93 of 2018, which clarifies what is considered an inducement for a patient to participate in a cancer clinical trial, allowing private donors and foundations to assist with the costs.
Although Pennsylvania passed a Right-to-Try Law in 2017, giving terminally ill patients an avenue to try experimental treatments that aren’t fully approved by the federal government, many cannot afford the necessary treatments and costly expenses related to participation in clinical trials.
Dinniman said that between both Act 93 and the bELIeve Act,
“Our aim is to create and pass a comprehensive legislative package to ensure coverage for cancer treatment and increase funding for cutting-edge pediatric cancer research,” Dinniman said. “Every child and every person fighting cancer deserves access to every available trial, treatment or tool at our disposal to assist them in that battle.”
This session, Martin has introduced Senate Bill 74, which calls for establishing a pediatric cancer research tax credit program, and Senate Bill 144, which would establish a grant purchase to assist intermediate units in the purchase of telepresence equipment for homebound students facing serious medical conditions.
“We need to do a better job at focusing resources and raising resources to find and hopefully cure pediatric cancer someday,” Martin said. “Only four percent of all cancer research dollars currently go to pediatric cancer research.”
Last session, Martin introduced and Dinniman supported, Act 73 of 2017, which allows Pennsylvanians to voluntarily donate $5 to the Pediatric Cancer Research Fund when electronically renewing a driver’s license, photo identification card or vehicle registration.
Benninghoff and Caltagirone discussed their work to establish a bipartisan/bicameral Pediatric Cancer Caucus.