News from the Board

Meetings

The recent highlights of our organization were the international meetings in Portugal, India and Brazil. Continental meetings such as SIOP Asia, Africa and Latin America are important occasions to promote paediatric oncology in developing nations. The collaboration of health care professionals and parent organisations in a so-called Therapeutic Alliance is probably the most effective way to improve the care for children with cancer and their families in these countries. ICCCPO supports the building and maintenance of parent organisations. If you wish more information or want ICCCPO 's help to set up a parent organisation in your community, please check our website (www.icccpo.org) or send an email to our Secretariat (icccpo@vokk.nl). The ICCCPO website contains not only information about our confederation but also provides articles, guidelines, practical tools for parent groups, an annotated resource list and our annual report.

Guidelines for Standards of Treatment and Care

Around 200,000 children worldwide get cancer each year. The economic and cultural background of a country will have a significant effect on the standards of treatment and care a family receives.
In more developed countries, children will be diagnosed early and receive treatment according to a standard protocol. Because of the work done to create national and international collaboration on treatment, some 70% of these children may be cured. In less developed countries, most children either do not get diagnosed, or receive inadequate treatment. Overall, some 80% of children with cancer fall into this latter category.
As a result, around 170,000 of children with cancer die each year. Over 100,000 of these deaths would be preventable, if all children had access to standard treatment. 
The most basic instinct of parents is to protect their children. Life threatening illness in a child therefore presents the most traumatic experience a family is likely to face. This trauma presents itself both socially and psychologically. And so, an integral part of treatment must be the care provided to help a family through the experience and to re-integrate into society afterwards.
Although levels of care are being developed around the world, it is not coordinated in the same way treatment is. Furthermore, measuring success in care can be largely subjective. 
Nonetheless, when the complexity is taken away, when there is now a good chance of saving the life of a child with cancer, they deserve to receive treatment; and the family as a whole should have the right to go through that treatment with minimal affect on the rest of their lives.
These families have only one chance to deal with the illness. Most who have taken the journey are able to look back and reflect on what they might have done differently. 
ICCCPO has developed a paper that examines what families should expect in terms of standards of treatment and care. At the meeting in Porto, ICCCPO and SIOP will collaborate on further development of this document. The standards might provide parent organisations and professionals a map to help individual families take an informed journey.

New members to the board

At the most recent conference we elected two new members to the executive committee: Edith Grynszpancholc from Argentina and Ira Soelistyo from Indonesia, thus having representatives from two very important areas with us on the board. We wish them luck in their new positions.

Marianne C. Naafs-Wilstra
Chair

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International Childhood Cancer Day 2003

The second ever International Childhood Cancer Day (ICCD) will take place on Saturday 15th February 2003. ICCD is your organisations chance to EDUCATE your community about the issue of childhood cancer and tell people about the valuable activities that your organisation carries out attract NEW SUPPORTERS to give their time, money or services to your cause MOTIVATE existing staff, volunteers, members and supporters by getting them involved in fun events
Cancer Research UK is continuing its support of ICCD by sponsoring the event in 2003, by making a donation to ICCCPO and producing and distributing an ICCD fundraising and media pack to all the member organisations taking part. (English and Spanish versions) The pack includes information on: 
   o How to raise money by organising a fundraising event
   o Fundraising event ideas
   o How to use the media to promote ICCD 2003, and the work of your organisation
   o Childhood cancer statistics
If you have not received your pack contact the ICCCPO coordinator (Geoff Thaxter) for the ICCD at info@lisathaxter.org. 
New for this year is the ICCD microsite on Cancer Research UK's main website, this will be live from 6th January 2003 and include:
   o Information about ICCD
   o What is childhood cancer?
   o Case studies from around the world
   o Message board
   o Links to press releases
   o Children's educational and interactive games corner
   o Fundraising and media pack for you to download
   o Microsite at:  www.cancerresearchuk.org/childcancerday

At our Porto conference Lucy Machin from Cancer Research UK presented a workshop on how to organise an ICCD fundraising event and promote your organisation and the event using the media. Lucy said, "It was really great to visit Portugal and have the opportunity to meet with parents from around the world. Cancer Research UK is delighted to be working with ICCCPO again, and sees this as a chance to build on the achievements of the first ICCD with the aim of helping thousands of children around the world. The key to a successful fundraising event or media campaign is planning ahead, the pack will help you to start thinking now about what you want to do, who will be involved and which contacts you need to make. Don't forget to let us know how it goes by filling in your evaluation forms after the day. Good Luck!"

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Executive Committee - 2003

Can you help children with cancer?
Nominations are sought for the Executive Committee of ICCCPO. If you are already actively helping children with cancer in your own country, do you have the energy to help these children internationally?
What kind of person is required?
To work effectively, the ICCCPO Executive Committee wishes to be made up of people that:
o Represent our wide membership
o Bring new skills to the board
o Are energetic and have time to commit to the role
o To be eligible you must also be part of an ICCCPO member organisation.

What is the commitment?
Election to the Executive Committee is for a 2-year period and then can be subject to re-election. So, you should be prepared to commit time to the role for a minimum of two years. 
Typically, you will find as an EC member you need to give around 4 hours a week to the role. You will also attend:
o Two EC meetings a year 
o Take an active role in the AGA
o Attend occasional Regional events 

Not sure? Want more information?

If you would like to find out a bit more, please contact Geoff Thaxter at info@lisathaxter.org 

When do the elections take place?

The next elections will take place at the 2003 AGA in Cairo, in October 2003.

When do nominations need to be in?

As soon as possible, but the closing date for is 30th June 2003. 

Send applications to Geoff Thaxter:  info@lisathaxter.org 
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Federazione Italiana di Oncoematologia Pediatrica

MILAN MOTION 2002: 5% for Hope

Whereas the Parents' Associations of Pediatric Oncology affiliated to the FIAGOP have met in Milan at the Convention Center of the Cariplo Foundation to celebrate the "First International Childhood Cancer Day" as part of the great family comprising children, parents, friends, volunteers, health operators and all those who in a variety of capabilities have met and cared for a child with cancer, whereas great progress has been made in the last 30 years in the treatment of children's cancer leading to a cure in 75% of cases, the Parents' Associations have played a key role in mobilizing resources to support:
o an increasingly broad application of "global assistance" 
o improvements in health structures 
o clinical and biological research 
all this in the spirit of a "Therapeutic Alliance" between families and health operators. 

On the contrary over 80% of the children stricken with cancer live in Third World countries where the access to effective treatment is often unavailable, thus eliminating any hope to be cured where the resources required to ensure adequate therapeutic standards and to promote research are increasingly inadequate due to escalating costs and limited investments in Public Health both in Third World countries and - to some extent - in developed countries as well.

The Parents' Associations of Pediatric Oncology make a petition to the national Health Authorities, the government and non-government organizations at national and international levels, and all persons of good will for continuation of their support to the Associations' programs in the fight against cancer in young children.

The Parents' Associations also request the Italian Centers of Pediatric Hemato-Oncology to identify specific projects to improve cooperation with similar centers in Third World countries, where they exist, or to create new centers, where they are not available.

In support of this effort, the Parents' Associations are planning to implement the program "5% for hope" which includes the allocation of 5% of their annual budget to finance: 
a. twining programs between Centers of Pediatric Oncology in Italy and similar Centers in Third World countries and 
b. "sponsor a child" programs for children stricken with cancer.

FIAGOP - MILAN, 19.01.2002

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Excerpts of a letter from Skopje

I wish you a successful work in Porto.
Here, in Macedonia, things are still on a level of initiative. In this moment few parents of us are taking part in activities of the general union established by women treated for cancer. Some of these activities are intended to support the pediatric oncology department in Skopje. 
I hope that till the end of the year we shall have established a separate society of parents with children touched by cancer and blood disorders.
Until then - with more information and knowledge. 
Yours sincerely
Natasha Kotlar-Trajkova

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PODC/ICCCPO ROUNDTABLE, SIOP CONGRESS, PORTO 
Improving Access to Care

Methods to improve access to care were discussed, in particular the influence of instructing primary health care workers in early warning signs of childhood cancer and the importance of immediate referral.

Sadie Cutland introduced the subject. The CHOC Childhood Cancer Foundation provided a salary for a doctor to promote the St. Siluans Warning Signs for Cancer in Children in 4 South African provinces. The foundation also pays for a toll-free telephone line to the Chris Hani Baragwanath Hospital in Soweto, Johannesburg, for advice regarding diagnosis and referral.
According to Stellios Poyiadjis, only about half of the expected 1200 new cases of childhood cancer in South Africa are referred to a pediatric cancer unit, and in the under-privileged sector of the population more than 80% present with advanced disease. Many patients die at home without diagnosis or are not referred. 

After giving 50 lectures on the early warning signs and the importance of immediate referral to primary health care workers of 4 provinces, and after distributing 1500 poster in English and another 1000 in Zulu, three big pediatric oncology units draining the 4 provinces experienced a 15-25% increase in the number of patients seen during the first 6 months following the campaign. At Chris Hani Baragwanath draining Gauteng and North West Provinces the number of referrals of hematology and oncology patients increased by 56% (oncology 60%). 

This project could not have been realised without the cooperation of the provincial public health care systems. The aforementioned lectures could be given at meetings that were compulsory for the primary health care workers and the instructor could use the address and phone/fax number lists of primary health care infirmaries, clinics and hospitals as well as directories of persons in charge of the different institutions. 

The toll-free line was not always used as intended. Initially parents of patients at Chris Hani Baragwanath tried to use it for personal communications, or the line was used to get information on non-oncological problems. Despite these difficulties, at least 1-3 relevant calls came in per day. 
The question was raised if the pediatric cancer units were prepared to receive rapidly increasing numbers of children with cancer and what the financial implications of such a development could be. It was estimated that first more nurses and lab technicians were needed, but that other services might be affected too, e.g. imaging, blood banking, pathology etc. By developing outpatient clinics, shared care and the collaboration with parent's groups, it was thought that some of these new needs could be met.  

In the discussion Ira Soelystro from the Indonesian Childhood Cancer Foundation, presented a poster developed for the International Childhood Cancer Day of January 15, 2002. She underscored the need for a WHO approved List of Warning Signs. Salma Choudhury from the ASHIC Foundation for Childhood Cancer in Dhaka, Bangladesh said, that her foundation uses well baby clinics to advertise early warning signs. 

Hanns Peter Wagner explained the concept of local pediatric oncology networks developing around a pediatric oncology unit, with contacts to peripheral practitioners and health care workers to promote triage, rapid referral of good risk patients, palliative care locally for poor risk patients and, where possible, shared care. Many networks of this type have been developed together with parent's organizations, e.g. NACC: Recife, Brazil, A.Pedrosa, or L'Avenir, Rabat, Morocco, M. El Harras to name just two. The development of palliative care and support for parents of poor risk children in the periphery is very important and alleviates a lot of distress.

Gerlind Bode summarized the discussions by underscoring the important role of parent's organizations in promoting early warning signs but also in developing local pediatric cancer networks. 

Prof. Hanns Peter Wagner

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Book Reviews

SOLDATINI SPARATI – SHOT SOLDIERS by Barbara Cardamone

available in Italian from MURSIA EDITORI – www.mursia.com

Barbara Cardamone is a mother of a child who has recovered from leukemia.  She wrote this book during her child’s illness. The book, published in Italy in February 2002,  was very successful and sold more than 10,000 copies in 5 months. It is now in its fourth reprint and  will most likely be translated into English very soon.

Barbara herself wrote this foreword for our readers:

“I have only a  few lines to tell the story of how the magic of words succeeded in destroying  the daily anxiety that possessed me and my role as a mother.

My son, in 1998, was diagnosed with acute lymphoblastic leukaemia, and suddenly we fell into an unimaginable despair with no light at the end of the tunnel.

But I rebelled. You must take the disease by the hand and have a friendly walk with it. Smile at chemotherapy, for irony wins over despair. This book is a collection of happiness and sorrow brought together to make my work possible. It was not intended to undo the hardships I have endured. Therapeutic it was, in that it helped to cleanse my soul of those awful thoughts – how can life be so cruel. The emotions, so impalpable, took shape and are in every page where I don’t sing  the drama, but I dance with it. I wouldn’t want to repeat this experience for anything in my life. I walked on ice for two long years and I played the acrobat …. Many times I thought I would slip and fall, or I wouldn’t make it, wishing for what I was before, a mother with no problems at all. As I have written in my book, I am a better mother and a better woman now. It is often only grief that brings change; only evil, that allows us to see the good.

Filippo, my son, is fine now. He thinks he had a problem with weak cells. He doesn’t know he won the most difficult battle of his young life. The soldiers shot into his body by syringes killed the most feared of monsters: cancer.”

Barbara Cardamone

How do you feel?

Young people’s thoughts on being ill and some ideas to help.  

A brochure written for young people who have been ill, for their relatives and friends, and for professionals involved in their care, including doctors, nurses and social workers.

To be obtained from

UICC Education Department.  3 rue du Conseil-Général,  1205 Geneva, Switzerland

e-mail: mortara@uicc.ch

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