CRYSTAL CITY, Va--Candle-lighters Childhood Cancer Foundation, headquartered in Bethesda, Maryland, met to celebrate its 25th anniversary, to update the 550 parents and children with cancer who attended the meeting, and to honor individuals and organizations making a contribution to childhood cancer research.
Candlelighters provides information and assistance to help people cope with the effects of childhood cancer. Elisabeth Spoerl, president, said that the organization is "an important leader in the pediatric oncology community. It has an international network of more than 400 groups and 40,000 individual members."
Visits to Congress
Since Candlelighters is both a support and an advocacy group, many participants visited their congressional representatives as part of their conference agenda, to urge Congress to support pediatric clinical trials. They were encouraged to do so by Stacey Beckhardt, director of government relations, American Society of Clinical Oncology, and Kerrie Wilson of the American Cancer Society's government relations staff.
Ms. Beckhardt said that 60% to 70% of children with cancer are treated within the context of a clinical trial. "They do better than kids who do not have the advantage of clinical trial participation," she said.
She noted that one of the reasons pediatric oncologists may hesitate to recommend treatment via a clinical trial, and parents may hesitate to enroll their child, is because of the perception that insurance companies refuse to pay for the cost of treatment in trials.
"The truth is that most insurers are already covering most clinical trials," Ms. Beckhardt said. She asked the parents in the audience to make three major points in their visit to Congress:
- Denial of claims for other than standard care should be reserved for unqualified practitioners using "experimental and untested" drugs that are not being investigated as part of a peer-reviewed trial. "It's in everyone's best interest to refuse to pay for quackery," she said. "But a clinical trial carries with it the same professionalism as standard care."
- Most clinical trials are no more expensive than standard treatment.
- Clinical trials are the best protection against wide dissemination of new treatments that have not been adequately tested.