By Nancy Keene

Kathleen Rea Monaco was diagnosed with acute lymphoblastic leukemia in 1968. Her mother, Grace Ann Monaco, was a young attorney practicing land and natural resources law in Washington, DC. Monaco formed strong friendships with parents of other children in treatment at Children's National Medical Center in Washington, DC. They were a powerful and eclectic group of scientists, journalists, government workers, and lawyers. Sandy Leiken, MD, and the other superb physicians and nurses at Children's encouraged them to work together to improve the lot of children with cancer.

"About 25 of us started meeting wherever we could find space--boiler rooms, corridors outside the emergency room--and Candlelighters was born," Monaco said. The parents lobbied legislators on Capitol Hill, focusing on selected goals like increasing access to pediatric clinical trials, and funding these legislators' efforts toward accomplishing these goals so that they could be done well. One of the founding members, Dick Sullivan, was an influential congressional staffer, so the fledgling group was able to meet and talk frequently with members of Congress. Monaco explains, "We dashed around banging people over the head in nice ways and were very successful in obtaining national research funds for pediatric cancer."

Another issue close to the hearts of the founding members of Candlelighters was raising awareness of the importance of nutrition for children with cancer. Children's size fluctuates from skeletal to obese at different points during treatment, and very little was known about how to prevent these problems. Candlelighters presented testimony to Chairman Paul Rodgers (Health Subcommittee) on the need for information based on research as well as communication in this area. The National Cancer Institute (NCI) hierarchy agreed with Candlelighters' analysis. As a result, Congress instituted a Diet, Cancer, and Nutrition Program in the NCI that was funded in 1974. This program has led research efforts on the effects of diet on cancer and has published and updated numerous informational booklets that have helped thousands of families of children with cancer.

Many of these early Candlelighters' members traveled, taking time to visit children's hospitals across the country, meeting with social workers, parents, and children. Monaco explains, "Our traveling members really got the ball rolling. We talked about the importance of parent-peer support and networked with parents across the US and Canada." To maintain these first connections, Grace Ann Monaco and Julie Sullivan, Dick's wife, started a newsletter in 1970. With help from other parents, they wrote it and made copies on the House of Representatives' mimeograph machine. Then the families would gather and lick envelopes. Monaco laughs at the memory of the children lined up with mucilage-coated tongues as they stuffed and sealed envelopes.

Another program that began in 1970 under Candlelighters' auspices was the Childhood Cancer Ombudsman Program. Candlelighters parents were beginning to receive invitations to speak at national events. They met clinical and academic doctors who were like-minded and willing to volunteer time to help children. The Ombudsman program used panels of volunteer doctors and lawyers to give free opinions on issues such as treatment choices, informed consent, employment discrimination against parents, education discrimination, access to military service, and barriers to insurance. Candlelighters grew too big for Monaco's house in the mid-1970s and moved to a windowless office in the quarters of the American Cancer Society in Washington, DC. Marvella Bayh, wife of Senator Birch Bayh, laid the groundwork to get funding at the national level for the rapidly growing organization. In 1980, the national American Cancer Society funded Candlelighters, and they moved into their own office. Today, Candlelighters (1-800-366-CCCF) has over 40,000 members and is respected worldwide. Monaco says, "For many years, legislators would call to ask our opinion about legislation related to our areas of expertise. It was charming and wonderful."

Monaco stepped aside in the early '90s to let new blood take over but by 1995, Candlelighters' resources could not support the Childhood Cancer Ombudsman Program. Today, Daniel Fiduccia, a disability rights expert, and Gib Smith, an attorney, both cancer survivors, continue to work with Monaco to operate the Ombudsman program independently. It provides services upon direct referral from parent support groups or professionals. Its expanded services include help for survivors dealing with employment discrimination and insurance issues and help with insurance coverage for children with cancer for whom services have been denied. The Ombudsman Program can be contacted at P.O. Box 595, Burgess, Virginia 22432.

Monaco also founded the Medical Care Ombudsman Program (MCOP), a service of the Medical Care Management Corporation of Bethesda, Maryland. MCOP, utilizing a panel of over 500 medical professionals, provides external, independent reviews of coverage denials (appeals) and predetermination reviews at the request of states, insurers, employers, HMOs, and other plans. This program was used as the model in California for the first legislation in a state that mandated patient access to independent, external reviews of treatment denials. MCOP also continues Monaco's volunteer tradition: 85 percent of the doctors participating have agreed to provide free reviews for patients and families covering all domains of medicine.

Monaco believes in trying to change things from the inside out. She says, "If you give people of goodwill a way to reform the system, they usually will. It's far better to do that than to drag their name through the mud or the courts. Doing that makes enemies, our way makes partners." Monaco's central philosophy of service is, "Don't make headlines, just get the job done."