Three year old Robin Bush is diagnosed with leukemia. Her parents – George H.W. and Barbara Bush were advised to not tell anyone. This was the culture of the time.
George Bush and Robin
Six year old Danny McGaughy was diagnosed with leukemia. His parents, Bev and Bob McGaughy were concerned about the need for increased research funding within the NCI. They convinced their son’s doctors to arrange a meeting of parents whose children were being treated for cancer at Children’s National Medical Center (CNMC) in Washington, DC. The initial meeting, held in the basement of CNMC, was attended by 25 parents, a number of them Capitol Hill insiders. Several of these parents were surprised to realize that they knew some of the others as colleagues, but had no idea that these colleagues also had children with cancer. At a time when families of children with cancer were encouraged not to speak of their plight, this group came together and decided they could no longer be silent.
Bev and Bob McGaughy sparked interest in building an advocacy campaign for clinical trials and appropriations for childhood cancer research. Al Karr brought journalistic expertise, Amie Weiss legal. Dick Sullivan used his lobbyist connections to secure meeting rooms in the Rayburn HOB and he and his wife Julie helped formulate policy. Bob McGaughy set up NCI interviews and NCI staff as well as doctors at CNMC helped the Koltnows formulate the messaging for Grace Monaco (mother of Kathleen Rea, diagnosed with ALL at 18 months of age) and a DC lawyer who had the oratory skills to deliver it.
The parent group established Candlelighters as a 501(c)(4)—the first childhood cancer advocacy organization. Working as volunteers out of their homes, they began to build their grassroots base across the country and began lobbying Congress about the need for increased cancer research funding. They also created the Childhood Cancer Ombudsman Program where a network of volunteer doctors and lawyers gave free opinions on issues including treatment choices, informed consent, employment discrimination against parents, education discrimination, access to military service and barriers to health insurance.
Candlelighters helped gain passage of National Cancer Act of 1971, signed into law by President Richard Nixon on December 23, 1971 proclaiming the official start to the "War on Cancer." In spite of a federal funding rate of 50% for peer reviewed and ranked research grants, federal cancer research funding was considered to be at a crisis point.
When the appropriated amounts fell short of recommended/authorized amounts they joined the public outcry which resulted in the Office of Management and Budget to release 107 positions for cancer research and treatment, previously blocked by under-funding and impoundment.
June 15, 1971, Grace Monaco on behalf of The Candlelighters testified before the Subcommittee on Labor-HEW of the House Committee on Appropriations.
Ms. Monaco thanks the House Subcommittee with putting its “backs against the wall for cancer victims everywhere in the face of substantial opposition and voted the significant increase in funds that spearheaded a reordering of national priorities in the cancer area, which should insure the eventual conquest of cancer.” She introduced Candlelighters as a voice that will inform them of the results of their efforts and assist them in bringing attending to cancer funding and program needs, using childhood cancer as the barometer of their congressional efforts.
Health, Education and Welfare Secretary, Elliot Richardson
Ms. Monaco also highlighted actions taken by the Office of Management and Budget (OMB) to refuse to release funds which had been approved by the NCI and appropriated by the Subcommittee for training grants and fellowships. She traced OMB’s actions to statements made by Health, Education and Welfare Secretary Elliot Richardson, and argued that the President’s support for increased funding must have led to a misunderstanding by the OMB. She charged the Subcommittee to remedy this situation.
April 25, 1972, Grace Monaco, President, Candlelighters testified before the Subcommittee on Labor-HEW of the House Committee on Appropriations. Ms. Monaco praised the efforts made by this committee, highlighting their response to the OMB that resulted in the effective release of the clinical training funds. With that advocacy success, she highlighted the following increased appropriations as supported by NCI Director, Dr. Carl Baker:
- Additional $18.4 million for chemotherapy research to further develop combination therapy to lengthen the lives of cancer patients;
- Additional $26 million to Cancer Control (which included research conducted by 19 institutions under the Children’s Cancer Study Group);
- Additional $1.5 million for clinical training, for a total of $45.9 million.
In summary, Ms. Monaco stated, “I think that it is important to remember that clinical investigation, training and good patient care go hand in hand, that one cannot survive without the other. If funds are curtained for clinical investigation, the others will eventually suffer. If training is curtailed, young people with new ideas cannot be educated and stimulated to provide new areas of investigation and eventually control of cancer. It is necessary, therefore, to support all aspect of cancer work, with particular emphasis on clinical investigation and training. By doing this, our understanding of cancer and new leads into treatment will be stimulated.”
July, 1974, on behalf of Candlelighters, parent advocate Grace Ann Monaco testified before the Senate Committee and proposed:
- Full appropriation of the National Cancer Act ($400 million FY ’72; $500 million FY ’73; $600 million FY ’74);
- Forbid Chief Executive from impoundment of public health funds;
- Authorize $2.7 billion for next three year period;
- Strike imposed limit of 15 national cancer research centers; all the Director of the NCI to determine appropriate number due to hardships imposed by travel to 15 locations. The goal was to allow the greatest number of Americans to benefit from cancer research;
- Free NCI Director from bureaucratic restrictions placed upon them by the NIH and Department of Health, Education & Welfare;
- Create a cancer information clearing house or cancer treatment information center for physicians and the public to use to share advances in treatment as well as research, and to provide proper nutrition and a supportive environment to allow optimum success of treatment program.
January 30, 1974, parent advocates Richard Sullivan and Grace Monaco from Candlelighters testified to Senate Committee on Appropriations’ Subcommittee on Labor, Health, Education & Welfare and proposed:
- An appropriation of $800 million for the NCI for 1975;
- Allow creation of new cancer centers without penalizing them for not already being large, prestigious, well-endowed institutions;
- Create provisions for patients to cross state lines when in-state care is too remote;
- Fund at least 25 additional NCI staff positions to handle drug requests;
- Direct NCI to work with medical schools to train students to deal with death and the dying patient and include practicing physicians in this effort;
- Require NCI to evaluate new and existing patients neurologically as well as medically and hematologically, and urge insurers to include such evaluations in their coverage;
- Educate congressional offices of the need for insurers to review coverage standards. In 1974 some insurers didn't recognize chemotherapy as a treatment for cancer; some wouldn't pay for rehabilitations, psychiatric or group counseling or experimental drugs, protective environments and antibiotic therapy;
- Appropriate $50 million for fiscal year 1975 for Cancer Control Program and restore staffing
levels in Office of Cancer Communication to 1973 levels;
- Increase overall appropriation 5.4% vs. 4% requested by NCI, $6.5 million for a nutrition program and $1.4 million for neurological evaluation;
- Direct NCI to establish a standard patient/physician ratio.
The amendment authorized the NCI program to “collect, analyze and disseminate information (including information respecting diet and nutrition programs for cancer patients and the relationship between nutrition and cancer) useful in the prevention, diagnosis and treatment of cancer.”
The initial group of members who started the organization recognized that in addition to lobbying, they discovered that their contacts with each other led to meaningful support and a sharing of information, feelings and reactions to their children’s diagnoses. Through their parent to parent contacts and self-help groups they shared social occasions, common emotions of fear, hope, anger, and demonstrated to each other that they did have the capacity to handle the difficulties of living with their child’s cancer with strength, grace and even humor. They became a support system as “second families” to each other. As such, they decided as a group to expand their mission beyond lobbying and include education and support. As such, Candlelighters gave up their 501(c)4 and became incorporated as a 501(c)3. Its purposes that were set forth in the original charter are:
1. to encourage and support research and the application of that research seeking to control, cure, and prevent all types of cancer, with particular emphasis upon encouraging and supporting research and its application to the control, cure and prevention of cancer in children;
2. to increase the public awareness of the problems related to cancer and the efforts being undertaken to control, cure and prevent cancer; and
3. to understand the special problems created for individuals having cancer, and for the families of such individuals, and to provide encouragement and hope to those individuals and their families.
Candlelighters testified before the House Committee on Appropriations’ Subcommittee on Labor, Health, Education and Welfare advocating for:
The amount requested by the President for NCI for fiscal year 1977 was substantially below the 1976 amount, before inflation. In addition to funding NCI at a commensurate level, Candlelighters recommended immediate steps to set the basis for greater future gains:
- Add $20 million and 14 positions to the research program of Cause and Prevention Research
to support environmental carcinogenesis research;
- Add $10 million and six positions for Cancer Biology to broaden understanding of the body
metabolism as it reacts to potentially carcinogenic agents and also to lay the basis for a
broad future understanding of other potentially applicable areas of biochemistry;
- Establish a new Research area to serve as the administrative mechanism for the NCI to bring
together entities that are enabling NCI to establish a world-wide leadership role to understand the effects of trace elements, chemicals, etc., on the body and health;
- Support a strong Toxic Substances Act. While NCI cannot test all new chemicals for their effects upon humans, they could be tested by third party labs with testing paid for by the industry developing them;
- Increase Psycho-Social Support. While diseases are classified as chronic or fatal, childhood
cancers are often both at the same time, chronic because they live with it for a long time, and fatal because they eventually die of it. Now that children are living longer, with both physical and psychological pain, they were in greater need of this support. Candlelighters urged an inter-agency agreement be worked out with the National Institute of Mental Health to support young cancer patients and their families;
- For the NIH Clinical Center, Candlelighters urged the addition of 3 new social work positions,
a non-surgical ICU and the requisite 12 nursing staff to support it, along with housekeeping staff.
Candlelighters Foundation is now comprised of support groups in 42 states, Canada and Europe. The National office located in Washington D.C. creates the first Childhood Cancer Information Service responding to mail and phone inquiries from parents, medical and/or psychosocial professionals, responding to more than 1,000 requests for information per month.
Candlelighters published their Foundation Bibliography and Resource Guide to assist families with more advanced and detailed materials on specific cancers, treatment, side-effects and survival.
Grace Monaco on behalf of The Candlelighters Foundation testified in February before the Senate Committee on Appropriations’ Subcommittee on Labor, Health, Education and Welfare, drawing attention to:
Administration's $878.8 million request for fiscal year 1979 was only .7% higher than 1978 levels allowing only 30% of scientifically approved priority one grant applications to be funded.
– Given inflation, the NCI would require an additional $50 million to stay flat.
– Candlelighters requested an additional $62 million for NCI for fiscal year 1979, with specific line item treatment for the following programs:
- $1.7 million for Cancer Control including a demonstration project for the management of adolescent cancer patients;
- $1.5 million for Cancer Communications to enhance the program by 6 FTE’s as well as the
publication of 24 new pamphlets for cancer patients dealing with specific cancer types;
- $500,000 to the Division of Pediatric Oncology within the NIH Clinical Center with an
emphasis on the study of long term survivors and the psychosocial and neurological
- $9.5 million for the Diet, Nutrition and Cancer Program (DNCP) which was mandated by
Congress in 1974 at the request of the Candlelighters Foundation.
Grace Monaco on behalf of the Candlelighters Foundation testified before the House Committee on Interstate and Foreign Commerce’s Subcommittee on Health and Environment on the Biomedical Research and Research Training Amendments of 1978. 50% of the expected 6400 new pediatric cancer cases were anticipated to achieve a five year survival. They urged:
- The establishment of regional Comprehensive Cancer Centers for the research of Childhood and Adolescent Cancers; the establishment of a National Comprehensive Cancer Registry for Childhood and Adolescent Cancers. By this time, the greatest advances for children had been made in centers devoted exclusively to pediatric cancers, and the prevailing view in adult centers was that pediatric cancer is a small percentage of cancers, and thus shouldn't receive the attention or program status that adult cancers receive in spite of the fact that developments in childhood cancer had been successfully applied to adult cancer therapy (i.e., pediatric cancers pioneered combined modality therapy including surgery, radiation and chemotherapy);
- The role of the Office of Cancer Communications be extended to include the rehabilitation of the cancer patient, including employability, insurability, education, physical therapy, psycho-social support, and the long term effects of surviving cancer and fund six new positions to support this effort;
- Recommendations for the Appropriations levels for the NCI programs and for cancer control for FY’79 through to FY’81.
Grace Monaco on behalf of the Candlelighters Foundation testified during the NCI Oversight Hearings in front of the Subcommittee on Health and Science Research of the Senate Committee on Human Resources outlining:
- The financial impact of the childhood cancer diagnosis on the family was highlighted with out of pocket costs for no-medical expenses averaging more than 15% of the family budget. Cancer was noted as the second leading cause of death of American children (next to accidents). Estimated 6,000 diagnosed with 2,500 estimated deaths under the age of 15. The 5 year survival rate for all types of childhood cancer was estimated to be 39%;
- Creation of uniform national standards for the Crippled Children's Program (an outgrowth of the social security system) to offer basic coverage for all children with cancer in all states. This Program effectively discriminated against patients who weren't guaranteed to survive;
- Focus on the need for national health insurance for catastrophic illness;
- Development of pediatric pain assessment and management research, which was not yet supported by the NCI;
- Development of less toxic treatments to avoid adverse complications for survivors of cancer. “For the longevity of life, we pay dearly. He lived a long time (seven years) but the result of his living with this disease caused extensive damage to his lungs and cataracts in his eyes.”;
- Expansion of NCI funded adult hospice program to help pediatric patients through team hospice support for families who wish to have their children die at home;
- Candlelighters took the opportunity to acknowledge that the NCI had responded to most needs articulated by the group (psycho-social research, quality public and physician information, multi-Institute collaboration, especially in the area of eye and brain tumors, and nutrition.)
Candlelighters local support programs now established in 45 states, Canada, Australia and Europe. March 30, 1979, Grace Monaco, on behalf of The Candlelighters Foundation testified for the following:
- Expansion of the federally funded research and clinical trial effort to translate the successes in the acute leukemias, lymphatic cancer, Hodgkin’s, bone cancers, Wilm’s tumors, retinoblastoma and rhabdomyosarcoma to myelogenous leukemias, brain and central nervous system tumors and neuroblastoma;
- Expansion of the consortium approach to pediatric and adolescent cancer supported by a network, tumor registry and computer access system to all children, wherever treated to experience the same opportunities for long term survival and cure that exist in the centers of excellence;
- Expansion of the efforts to develop less toxic therapies;
- Initiation of research into pain assessment and management in pediatric and adolescent cancer patients. In 1979, many hospitalized children with cancer who were prescribed pain medication didn't receive them because of the "old nurses tale" that children’s nervous systems are immature and therefore children do not experience pain with the intensity adults do, and because children do not ask for them;
- Funding to allow children to die at home when this option is chosen by the family;
- Increased funding for blood component support programs;
- Inquiry into discrimination against young cancer patients in state vocational, education and rehabilitation programs.
- Increased funding and positions for the Office of Cancer Communications to address psychological pressures of cancer and to create and disseminate information on rehabilitation;
- Increased funding the NIH Clinical Center to expand intramural programs;
- Continued support for the nutrition program and to educate physicians and medical students in proper nutritional support as applied to cancer.
April 2, 1979, Grace Monaco, on behalf of Candlelighters Foundation testified before the Senate Committee on Finance regarding Catastrophic Health Insurance Act. (S. 350). The bill was to amend the Social Security Act by adding a new title XXI which would provide insurance against the costs of catastrophic illness, by replacing the medical program with a Federal medical assistance plan for low-income people, and by adding a new title XV which would encourage and facilitate the availability, through private insurance carriers basic health insurance at reasonable premium charges. Ms. Monaco indicated that the financial burden borne by families is second only to the distress caused by the cancer itself. She cited that the out-of-pocket costs for non-medical expenses usually averaged more than 15% of the family income. For half of the families the amount was over 2%. She urged:
- Catastrophic coverage for pediatric cancer must include transportation costs and lodging as needed for evaluation, re-evaluation and specialized care at their tertiary research facility; in-patient hospital costs; out-patient visits, all drugs, radiotherapy, blood components, and prosthesis, nursing home care during recuperation and terminal stages, and counseling costs for the family;
- Standardization of the Crippled Children’s Programs. Some states don't cover all forms of childhood cancers, others cover diagnostic tests but not treatment and vice versa. Eligibility requirements in almost all cases are very strict so many needy cases are not covered, and language is so complicated, most cannot understand it. Some states require the child to have a good prognosis for cure before they're accepted into the program; others drop children from the program when their prognosis drops from good to poor.
In November 1980, the American Cancer Society (ACS) and the Candlelighters' National Board of Directors entered into a formal agreement of affiliation whereby ACS provided funding through a Cancer Control Grant to cover the operations and staffing of Candlelighters National office. Candlelighters maintained its 501(c) 3 designation, operating under the agreement for 15 years. In 1995, the two organizations agreed to terminate the agreement but continue to engage in professional collaboration through their joint membership on the Alliance for Childhood Cancer to the present day.
Feb. 11, 1980, Grace Monaco on behalf of the Candlelighters Childhood Cancer Foundation (CCCF) testified on the impact of Catastrophic Illness as it related to families of children with cancer and the need for national health insurance. She cited:
- Children with cancer represent 1% of the total cancer burden which results in the majority of families needing to travel to one of 8 Centers of Excellence located 250 to 500 miles from their homes for their children to receive treatment. This results in enormous financial burden to these families;
- What is needed in a national health insurance coverage: 1/ hospital coverage, 2/ out-patient costs, 3/ drug costs, 4/ radiotherapy, 5/ blood products 6/ prosthetics, 7/ nursing home care that accommodates children, 8/ counselling, 9/ Home care for pediatric patients who are going to die at home.
April 17, 1980, Grace Monaco on behalf of the Candlelighters Foundation continued her testimony on behalf of the families in 48 states, bringing attention to the following:
- $33 million for Diet, Nutrition and Cancer Program (DNCP) citing research taking place using synthetic Vitamin A (13 cis-retinoic acid) to prevent some cancers; research into the impact of malnutrition on cancer survival as well as nutrition education;
- An increase of 10% funding to the NCI Intramural Pediatric Clinical and Radiation Oncology programs;
- Full $44 million funding of the cancer epidemiology and toxicology programs;
- Expanded National Library of Medicine’s computerized retrieval and data base systems (CLINPROT) which stands for Clinical Cancer Protocols to include all pediatric cases and increased accessibility to all physicians across the country who are caring for a child or adolescent with cancer;
- Funding increases to develop less toxic second generation chemotherapies, more conservative surgical and radiological approaches to treatment. “Such a commitment and the funding for it are required so that we can assure our children who are survivors that they will not be blind, sterile, retarded, paralyzed or otherwise crippled.”
June 26, 1981, Mrs. Barbara Bush, from the office of the Vice President’s House, wrote a letter of support for The Candlelighters Foundation and sent her regrets that she was unable to attend the second national parent’s conference sponsored by Candlelighters.
June, 18, 1981, on behalf of the Candlelighters Foundation, Thomas Byrne, National Legislative Liaison for Candlelighters testified before the Subcommittee on Labor, Health, Education and Welfare (Labor, HEW), Committee on Appropriations, U.S. House of Representatives.
- Additional $250 million for the community cancer centers;
- Additional $150 million for pediatric and adolescent treatment and care;
- Additional $50 million to expand the NCI Information system to include pediatric and adolescent protocols;
- $160K line item in NCI budget to fund Massachusetts Cancer Incidence Registry;
- $500K line item in NCI budget to fund research project into the causes of cancer in the City of Woburn, MA which had a 4 times higher incidence rate of childhood leukemia than the national average. Research was subsequently conducted on the possibility that the elevated levels of childhood leukemia observed in Woburn over the 21-year period between 1966 and 1986 may have been caused by exposure to toxic metals introduced into the city’s drinking water supply from contaminated groundwater.
On November 3, 1981, on behalf of the Candlelighters Foundation, Grace Monaco, President testified at the Hearings of the National Cancer Institute held before the Investigations and General Oversight Committee of the Senate Labor and Human Resources Committee. She emphasized that “childhood cancer had been the welcome testing ground for the approach in cancer therapy being used beneficially in the adult cancer population,” adding that the overall survival rate for pediatric cancers was 33% with a five year life-expectancy of 60-65% for children treated in trained centers of excellence. She reiterated that this increase in cure and survival was based upon sound scientific evidence.
Ms. Monaco then publically criticized the legalization of Laetrile being used in 20 states and questioned the NCI’s laissez faire attitude towards drug approval. She cited the Mehta article entitled: Ineffectiveness of Laetrile in the Treatment of Acute Lymphocytic Leukemia, which highlighted the death of a 3 ½ year old child with leukemia who died because of abandoning standard of care in favor of for the non-proven complimentary medicine known as Laetrile (another name for the chemical amygdalin, found in the pits of many fruits and in numerous plants with cyanide thought to be the main component of chemical activity), demanding that the FDA and NCI not accommodate those “who did not choose to play by the rules of scientific investigation and publication.” She strongly recommended that until final results are available, laetrile should be considered an unproven drug in the induction and/or maintenance of therapy in treatment of childhood acute lymphoblastic leukemia.
Candlelighters was comprised of the national office in Washington DC and 175 parent chapters in 49 states across the U.S. They had newsletter mailings lists of 6,000 medical, psychosocial and community professionals, 8,000 parents of children with cancer and 800 adolescents with cancer. The office was staffed by two full time and two part time employees—all of whom had a personal childhood cancer experience.
December 28, 1982, Candlelighters name is successfully registered as word mark with the U.S. Patent and Trademark Office (USPTO).
April 23, 1982, on behalf of The Candlelighters Foundation, Grace Monaco testified before the Committee on Finance, Subcommittee on Taxation and Debt Management, United States Senate in support of amending the Internal Revenue Code of 1954. Ms. Monaco cited a survey done by Public Research Associates in 1980 of Candlelighters Foundation families which illustrated that 55% of families travelled 1 to 50 miles for their child’s treatment, with 13% of families travelling greater than 200 miles for treatment. As such, Ms. Monaco endorsed:
- Raising the medical deductible as a result of travel related costs incurred as a result of catastrophic coverage of pediatric cancer care.
April 26, 1982, Grace Monaco on behalf of The Candlelighters Foundation testified before the Committee on Appropriations, Subcommittee of Labor, HEW. U.S. House of Representatives. The Candlelighters Foundation identified disparity in survival based upon race. Specifically, it was observed that in the early 1970s, 92% of Caucasian children diagnosed with ALL lived an average of 23 months. In contrast, 74% of African American children diagnosed with ALL lived an average of 14 months.
Ms. Monaco advocated for:
- Full funding of the Children’s Cancer Study Group, Cancer Centers Outreach Programs, Community Clinical Oncology Programs and increases in training grants;
- The Cooperative Clinical Research budget for FY’83 was $36 million, of which $6,665,000 was for pediatric and adolescent cancer. This represented 18.51% of the Cooperative Clinical Research budget dedicated to child and adolescent cancer. The “ask” to the Appropriations Committee was to fully fund the pediatric and adolescent programs by an additional $1.2 million bringing total funding to $7,865,000 or 21.8%.
May 3, 1982, Grace Monaco on behalf of the Candlelighters Foundation testified before the Subcommittee on Labor, Health and Human Services, Committee on Appropriations, U.S. Senate regarding the National Cancer Institute appropriations.
Ms. Monaco highlighted the importance of children being treated for cancer at institutions where specialists are trained in pediatric hematology, oncology, surgery and radiology. She emphasized that the decreased funding of cooperative groups, coupled with the shifting emphasis to refer some patients, particularly adolescents to clinical community oncology programs have the following effects:
- Adolescents with cancer would be siphoned off to less directed programs;
- Decreased funding would put an increased financial burden on families due to limited access to drugs;
- The medical centers and academic departments would be forced to underwrite an increasing proportion of clinical pediatric cancer research as the increased costs of performing good studies, data collection etc. are no longer being sufficiently covered by study group budgets. This comes at a time of shrinking general resources to support other phases of academic programs;
- Ancillary studies cannot be included in protocols because of the cost – for example, psychological testing of children treated for leukemia who received CNS prophylaxis chemotherapy;
- Cutback of training grants would lead to a shortage of well-trained academic researchers in clinical and basic science;
- Decreased funding would mean that institutions and study groups would need to absorb the costs associated with data collection, documentation and analysis;
- Reduced funding of basic research into the mechanisms of cancer cause and prevention will reduce the likely leads to the eventual eradication of cancer.
Ms. Monaco advocated for:
- The Cooperative Clinical Research budget for FY’83 was $36 million, of which $6,665,000.00 was for pediatric and adolescent cancer. This represented 18.51% of the Cooperative Clinical Research budget dedicated to child and adolescent cancer. The “ask” to the Appropriations Committee was to fully fund the pediatric and adolescent programs by an additional $1.2 million bringing total funding to $7,865,000.00 or 21.8%;
- Training grants restored to FY’82 with an increase of $734,000.00 bringing that budget to $22,344,000.00;
- Full funding for all Centers and community clinical oncology efforts with an associated budget of $28,344,000.00
It must be noted that on November 17, 1982, Dr. Harold Varmus MD, Professor of Microbiology, University of California, San Francisco was the winner of the Albert Lasker Basic Medical Research Award for his discovery that "oncogenes," or cancer-causing genes, are present in all normal cells.
Dr. Harold Varmus MD
April 26, 1983, the trademark for Candlelighter’s logo which consisted of a circle around a candle was successfully registered.
Candlelighters was granted approval by the National Cancer Institute to be a free user of its Protocol Data Query System (PDQ). This access provided information to all the NCI funded protocol research programs as well as access into the National Library of Medicine Medical Literature Analysis and Retrieval System (MEDLARS). This access helped facilitate childhood cancer specific information for the more than 8,000 requests made to Candlelighters annually from parents and professionals. (8.5% psychosocial professionals; 15% medical professionals; 33% parents/families/patients; 7.5% local groups; 15% other support organizations and 22% others).
Candlelighters was regarded as the “go-to information source” for childhood cancer and was known as The Candlelighters Foundation Pediatric/Adolescent Cancer Information and Resource Clearinghouse.
April 12, 1984, Grace Monaco testified before the Labor, Health and Human Services, Education and Related Agencies Appropriations Subcommittee, of the U.S. Senate Committee on Appropriations.
Ms. Monaco cited the progress made in the cure rate of many types of childhood cancer from 1950 to 1979. The 1970 survival rate overall for childhood cancers was 39%. By 1984, 54% of the children were considered cured. She continued to reiterate the need for full funding of the NCI cooperative groups, adding that a flat line budget would result in the pediatric clinical cooperative trials suffering cuts of 20% a year or more.
April 30, 1984, Grace Monaco on behalf of The Candlelighters Foundation testified before the Labor, Health and Human Services, Education Subcommittee, U.S. House of Representatives Committee on Appropriations. Her testimony to the House echoed her April 12th testimony to the Senate.
December 27, 1984, The Candlelighters Foundation filed an amendment to their Articles of Incorporation changing their name from The Candlelighters Foundation to Candlelighters Childhood Cancer Foundation.
Candlelighters Childhood Cancer Foundation support programs were now in all 50 states. The organization was also part of an International growing coalition of parent support organizations in Australia, Canada, Chile, Denmark, England, France, Germany, Greece, Guatemala, Holland, India, Indonesia, Ireland, Italy, Mexico, Sweden South Africa, East Africa and New Zealand.
There were an estimated 6,000 children with cancer diagnosed each year. The cure rate for acute lymphoblastic leukemia was 54% nationwide and 80% at Centers of Excellence in treating pediatric cancers.
Candlelighters 1984-85 budget represented the fifth year of the American Cancer Society/Candlelighters official affiliation. During this time, Candlelighters reported a fivefold increase in the number of people (almost equally divided between patient/families and professionals) that the Foundation served. Since 1980, the Candlelighters constituency increased from 5,000 to 25,000 individuals. This was in addition to the 150% increase in the number of affiliated groups, with a projected number of 272 local support groups in operation in fiscal year 1984-85. Candlelighters national office which was located in Washington D.C. was receiving about 8,000 requests for information and assistance annually.
Reports to the ACS highlighted that during the first four years of the agreement with the ACS, the number of Candlelighters constituents increased by 300%, the local groups by 100%. Comparative budget increases received by the ACS was a comparative 25%.
The proposed budget request by Candlelighters to the ACS for FY ’84-’85 was $244,804.00 The approved budget by the ACS for Candlelighters operations and programming was $145,000.00.
June 6, 1985, Grace Monaco, National Liaison Chairman of Candlelighters, testified before the Subcommittee on Employment Opportunity of the Committee on Education and Labor, U.S. House of Representatives, in support of Congressman Biaggi’s legislation H.R. 5849 entitled, Cancer Patient’s Employment Rights Act.
Ms. Monaco cited a study entitled “Psychological Consequences of Childhood Cancer Survival,” as well as gave multiple examples of childhood cancer survivors who were denied jobs, rejected from the armed forces, as well as college entrance based upon their previous cancer diagnosis and treatment. Survivors were also documented to be denied life and health insurance more frequently than their sibling controls.
Ms. Monaco supported the legislation which would make it, “unlawful employment practice for an employer, employment agency, or labor organization to require as a condition of employment an employee or perspective employee with a cancer history to meet medical standards which are unrelated to job requirements.”
May 6, 1986, Ms. Monaco repeated her above testimony before the Labor, Health and Human Services, Education Subcommittee, U.S. House of Representatives Committee on Appropriations.
The Candlelighters Foundation now served as the legislative arm of a national coalition of 225 parent groups in the U.S. as well as an international confederation of childhood cancer organizations located in Australia, Canada, Chile, Denmark, England, Finland, France, Germany, Greece, Guatemala, Holland, India, Indonesia, Ireland, Israel, Italy, Mexico, New Zealand, Sweden, South Africa, East Africa and Spain.
The Federal cancer research funding rate through the National Cancer Institute for peer reviewed and ranked research grants was 27%.
The overall survival rate for childhood cancer had now reached 54%.
April 24, 1986, Grace Monaco testified before the Labor, Health and Human Services, Education and Related Agencies Appropriations Subcommittee, US. Senate Committee on Appropriations. Ms. Monaco cited the need for the OMB to return funding and funding flexibility back to the NIH Directors, allowing them to shift budget funds as needed in order to fund exciting scientific discoveries.
Childhood cancer innovative research was heralded at the President’s Cancer Panel meeting held April 11th as an example of exciting scientific discoveries. The Panel, which was held at St. Jude Children’s Research Hospital addressed “the molecular characterization of childhood cancers and its application to innovative approaches to cancer therapy,” and was regarded as being ahead of their peers in adult cancer research.
Specifically, innovative research on the chromosomal translocations leading to acute myelogenous leukemia, as well as identification of c-myc gene amplification in neuroblastoma, was cited as a means to match treatment to the cytogenetic characterization of tumors.
Ms. Monaco expressed her concern with the proposed reduction of the NCI pediatric and adult clinical cooperative group programs to 20% and clinical center programs to 25%.
On behalf of Candlelighters, Ms. Monaco supported the following appropriations requests:
- Fully fund the cooperative clinical research programs at a level of $50,204,000.00
- Fully fund the clinical center programs at a rate of $135,627,000.00;
- Fully fund the Office of Cancer Communications at $900,000.00;
- Fully fund and support NCI’s intramural research and trial activities at $194,847,000.00;
- Fully fund cancer biology at $258,686.00;
- Fully fund pre-clinical research at $176,801.00; and
- Fully fund clinical treatment research at$180,807.00.