Resolution by the International Confederation of Childhood Cancer Parent Organizations of July 10, 1995

The General Assembly of the International Confederation of Childhood Cancer Parent Organizations, at its meeting held in Washington, D.C., on the 10th of July, 1995, considering:
- that the ICCCPO's main aim is to promote the best possible care for all children with cancer in the world;
- that all children have the right to mature physically, psycholgiccaly, socially, educationally and spiritually;
- that, at present, only 20% of the world's children have access to proper cancer care; and
- that the needs of children with cancer and their families vary from place to place and country to country,

Resolves
To fully endorse and support the establishment of "twinning programs", by virtue of which pediatric cancer units from developed countries cooperate and contribute to the improvement of care for children with cancer living in less developed countries.
Those twinning programs should be as comprehensive as possible, adapted not only to local needs, expectations and realities, but also to the capacities of local pediatric cancer units.
These programs should seek the involvement of local and national parent organisations in both more developed and less developed nations, and create the highest possible quality of parent-professional cooperation in the delivery of improved care.

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Aims of ICCCPO - The International Confederation of Childhood Cancer Parent Organizations

Founded in May of 1994, the International Confederation of Childhood Cancer Parent Organizations (ICCCPO) believes that every child with cancer, regardless of their financial or social class, race or national origin, deserves access to the best possible treatment and care that medicine can provide. And, that parents of children with cancer must have access to infomation about their child's disease so that they may make an informed decision about their child's treatment and care.

In order to achieve these goals, ICCCPO will:

1) Establish a network by which information from various member organizations may be shared with each other in order to educate the parents and health professionals of their organization.

2) Provide scholarships for parents and appropriate health professionals (i.e. pediatric oncologists, nurses, psychologists, and social workers, etc.) to assist them in attending international educational conferences so they may advance the treatment of childhood cancer and its affects in their own country.

3) Promote greater awareness and understanding of the issues and affects of childhood cancer on an international level by working with other health or child related organizations such as the World Health Organization, UNICEF, and the International Society of Pediatric Oncologists (SIOP).

4) Work with these organizations to create opportunities to improve access to advance treatment and care of childhood cancer patients, particularly in underdeveloped nations where far too often the best possible treatment and care is not available due to a lack of information, but more often due to a lack of medications and facilities.

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ICCCPO News

New address Secretariat

Nota Bene! The Secretariat has moved to: Grevgatan 39, S-114 53, Stockholm, Sweden. Phone and fax are still the same.

Application Form

Attached to this third Newsletter you will find an Application Form. If you want to join the ICCCPO - and we want you to join us - , please fill in this form and send it the Secretariat in Stockholm, Sweden. You can also contact the Secretariat if you are interested in this organization and want more information.
As you may well know the annual membership fee for a Nation is $500. In case there are more groups in a country, they can split this amount. However, if your organisation wants to join but does not have the financial means, please notify this in the application. As an appeal to solidarity, nations willing to pay more thus help others who cannot afford this amount to join the international confederation. 
In order to reach as many parents as possible and to achieve our goals, it is important that all parent organizations join the ICCCPO. Therefore we ask for your cooperation: please inform all groups you know about the ICCCPO, send them a copy of the Newsletter, start networking, or, if there is no parents initiative yet, send the information to the hospital.

ICCCPO is slowly growing to a global level

At the last General Assembly, held in Washington D.C., from July 9-11, 1995, we met many old friends from all over the world, and welcomed new ones, like South Africa, Iceland, Mexico and New Zealand. Some members of the Executive Committee unfortunately had to leave the board for personal reasons. We do thank Jesús Ma Gonzalez Marín, Jim Kitterman and Olga Rodriguez for their involvement in starting this international work. We are very glad that they found worthy successors in Mark Chesler, U.S.A., Sadie Cutland, South Africa, and Guadalupe Alejandre, Mexico.

Honorary Member
The General Assembly has appointed Jesús Maria Gonzalez Marín the first Honorary Member of the International Confederation of Childhood Cancer Parent Organizations. Thanks to his enthusiasm and the energy and time he spent on the establishment on an international confederation of parents, a dream became a reality and the ICCCPO finally was founded on the 1st of May 1994.

News on the Bibliography: send in your materials!

The ICCCPO has started a bibliography of all books, brochures and newsletters of the member organizations. We think that this exchange of information could prevent all organizations of inventing the wheel all over again and might be of help when a foreign family has its child in treatment in your country. Christine Wandzura from Candlelighters Canada will from now on coordinate this task. Please send all your editions with a short summary in the original language and in English (one or two lines) and with the ordering address, preferably on diskette (WP), to Candlelighters Childhood Cancer Foundation, 10 Alcorn Avenue, Suite 200, Toronto M4V 3B1, Canada.

Translations of the Newsletter

Mrs. Hortensia Diaz Asper of the Spanish association ASION offered to translate the ICCCPO Newsletter into Spanish for the period of a year. Those who need a Spanish translation, can contact the Secretariat for a Spanish copy.
We would be very pleased if you all could send your own translation of the Newsletter to either two editors or to the Secretariat. It might be of help to those who speak and read the same language.

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Starting and maintaining support groups

Abstract from a paper presented at the General Assembly of the ICCCPO, July 11, 1995, Washington, D.C.

Mark A. Chesler, PhD, University of Michigan and Candlelighters Childhood Cancer Foundation

Self-help groups and peer support groups are a vital source of compassion, experiential wisdom and empowerment for people in crisis. When operating well, they reflect democratic and voluntarist values that spur personal and political growth and activism.
This presentation discusses the major options available to and used by parents and children with cancer in self-help and peer support organizations. Various ways of initiating and sustaining such groups, with or without professional advice and support, will be presented. Issues addressed include: what are the crises and stresses that give rise to such groups; how do groups respond to the stresses involved in parenting children with cancer; what is a "successful" group; how can groups recruit broadly and encourage wide participation in leadership and program functions; how can leader transitions be accomplished in ways that sustain group functioning; what are the programs, activities or services delivered by successful groups; should parents of living children and parents of deceased children be in the same or related groups; how do groups work "effectively" with the medical care-system?
Discussion also examines the different options and images of regional or national organizations that try to coordinate many local groups; what are the major activities of such national organisations; how do they relate with national medical and political organizations; and how do they link to local parents, local groups and local medical care institutions?
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Childhood Cancer Care 2000: Ten Predictions

W. Archie Bleyer, MD

Head, Division of Pediatrics, Universuty of Texas M.D. Anderson Cancer Center, Houston TX.

Current trends of treatment advances and health-care reform suggest the following predictions for pediatric cancer therapy by the year 2000:

1) Diagnosis and therapy will become more cost-efficient, with elimination of many laboratory and radiographic evaluations, diminution in both hospitalizations and surgical interventions, and transfer of the many hospital- and clinic-based therapies to the home environment.

2) "Minimally invasive surgery" will replace many of the current operations, such as open-chest and open-abdominal procedures for biopsies, removal of tumors, and lysis of adhesions, and fine needle biopsies with local anesthesia will be used for the majority of cancer diagnosis operations.

3) During surgery, on-line pathologic corroboration of tumor-free margins will become standard, as well as other techniques to enhance resectability and completeness of resection such as intraoperative evoked response monitoring and cortical mapping for brain surgery.

4) Chemotherapy will continue to assume an increasing role, especially outpatient and home-based chemotherapy, as biologic agents and other therapeutic modalities prevent or ameliorate myelosuppression and other chemotherapeutic toxicities.

5) The ability to detect submicroscopic "residual" cancer during chemotherapy will lead to elimination of unnecessary therapy, and switches in the treatment before recurrence of cancer becomes symptomatic and less curable.

6) After a decade-long decline, radiotherapy will become more commonly applied, with newly focused radiotherapy techniques such as conformal radiotherapy and improved methods of immobilization.

7) Bone marrow autografts will be replaced by placental/umbilical cord rescue techniques and ex vivo expansion of peripheral blood stem cells.

8) The biologic-agent era will bloom, with agents to reduce myelosuppression from chemotherapy and radiotherapy leading the pack, followed by monoclonal antibodies directed growth factor receptors and conjugated with immunotoxins or radio-isotopes, and eventually by gene therapies.

9) Pediatric oncology will become increasingly more multimodal and multidisciplinary, with a need for more efficient treatment teams and greater coordination among treatment specialists; simultaneously, a single, non-M.D. care coordinator for each patient will be essential to coordinate care, minimize financial costs, and provide psychosocial support.

10) Clinical trials of new therapies for malignant tumors will decline, but if health-care reform and the plight of biomedical research are reconciliated, clinical trials will begin to rebound by the end of the century.
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Book reviews

Cancer and Self-Help 
Bridging the Troubled Waters of Childhood Illness

Mark A. Chesler and Barbara K. Chesney
University of Wisconsin Press, 464 pp. ISBN 0 299 14824 6 

Written for and about the special population of parents of children with cancer, this book explores the remarkable effectiveness of self-help groups and profiles their rapid rise as a resource complementing traditional health care. The authors draw on their own experience as members of such groups and on a combined thirty years of research on self-help. They provide essential information for families of children with cancer (and other chronic life-threatening illnesses), for health-care professionals working with them, and for scholars of self-help and psychosocial processes in health care- including explanations of how self-help groups function, why they are effective, and how they can be created and maintained.
Through self-help groups parents learn coping skills, find personal affirmation and mutual support, share wisdom gained from their experiences. Group participation improves parents' coping capabilities in the face of terrible odds and fosters an increased sense of empowerment as they care and advocate for their children in an increasingly complex health care system.
The book will come out by the end of the year.
Orders: The University of Wisconsin Press, 114 N. Murray Street, Madison, Wisconsin 53715 1199, Fax 608 262 7560. 
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