The Candlelighters Celebrate 25 Years Of Pediatric Cancer Support, Advocacy

September 1, 1995

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.

CRYSTAL CITY, Va--Candle-lighters Childhood Cancer Foundation,headquartered in Bethesda, Maryland, met to celebrate its 25thanniversary, to update the 550 parents and children with cancerwho attended the meeting, and to honor individuals and organizationsmaking a contribution to childhood cancer research.

Candlelighters provides information and assistance to help peoplecope with the effects of childhood cancer. Elisabeth Spoerl, president,said that the organization is "an important leader in thepediatric oncology community. It has an international networkof 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 representativesas part of their conference agenda, to urge Congress to supportpediatric clinical trials. They were encouraged to do so by StaceyBeckhardt, director of government relations, American Societyof Clinical Oncology, and Kerrie Wilson of the American CancerSociety's government relations staff.

Ms. Beckhardt said that 60% to 70% of children with cancer aretreated within the context of a clinical trial. "They dobetter than kids who do not have the advantage of clinical trialparticipation," she said.

She noted that one of the reasons pediatric oncologists may hesitateto recommend treatment via a clinical trial, and parents may hesitateto enroll their child, is because of the perception that insurancecompanies refuse to pay for the cost of treatment in trials.

"The truth is that most insurers are already covering mostclinical trials," Ms. Beckhardt said. She asked the parentsin the audience to make three major points in their visit to Congress:

  • Denial of claims for other than standard care should be reservedfor unqualified practitioners using "experimental and untested"drugs that are not being investigated as part of a peer-reviewedtrial. "It's in everyone's best interest to refuse to payfor quackery," she said. "But a clinical trial carrieswith it the same professionalism as standard care."
  • Most clinical trials are no more expensive than standardtreatment.
  • Clinical trials are the best protection against wide disseminationof new treatments that have not been adequately tested.

Candlelighters Awards

Candlelighters gave its awards for achievements in childhood cancerto the following: