Note From the Chair

In March the Executive Committee met for its mid-year meeting in the scenery of the beautiful castle of Echouboulains and its gardens (France). We had the chance to meet with the French parent groups who had a national meeting at the same time and to introduce ICCCPO to them. It was a productive meeting in many ways. For a couple of days we lived in a simple house where we shared rooms and prepared our own meals, and in those days we got to know each other better and our solidarity grew stronger. We were there to serve a common case: to improve treatment and care for our children. 
We deeply thank the people of L'Envol for the excellent arrangements and their warm welcome.
If your organisation wishes to host the Executive Committee for the mid year meeting in 2003, please contact Marianne Naafs or Simon Lala (EC).
The programme for the ICCCPO Conference in September this year is almost finalized. It looks very promising and ensures a successful meeting. We anticipate to meet many of you at the conference and Annual General Assembly in Porto (Portugal). There are several joint sessions with SIOP. Details about the programme and the first international survivors' programme are elsewhere in this newsletter and on our website. 
By the way, the ICCCPO-website deserves a regular visit! www.icccpo.org
Marianne Naafs-Wilstra
Chairwoman

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International Childhood Cancer Day in Bangladesh

On January 15, 2002 - as declared by ICCCPO - for the first time the International Childhood Cancer Day was performed in our country. Our program in Chittagong and Dhaka included a colorful rally brought out in the morning on the occasion by CLASS (in Dhaka by our Dhaka unit) and participated by hundreds of school students, boys and girls, enthusiasts. The Chittagong rally was led by the Mayor of Chittagong City Corporation Alhaj A. B. M. Mohiuddin Chowdhury. The rally, after parading main city streets, terminated at Press Club premises where the Mayor addressed the participants and others who gathered to work for fighting the menace of cancer. The participants wore T-shirts and headgears on which the logo and name of the organization, International Childhood Cancer Day were beautifully printed to create public awareness about childhood cancer. Leaflets were also distributed to attract public attention. A big-size banner was carried by participants in front of the rally to signify the Childhood Cancer Day. 
In the afternoon, a seminar was arranged at Zia Auditorium chaired by Shafiqul Alam Khan, President of the Rotary Club of Islamabad, Chittagong. The seminar styled as Childhood Cancer Care, was addressed, among others by Rotary Dist Governor (Bangladesh R.I. Dist 3280) Engr. Abdul Ahad, Mr. Farid Ahmed Chowdhury, President, Chittagong Chamber of Commerce & Industry, Mr. Golam Rabbani, Director of the Chittagong unit of the Bangladesh Red Cresent Society, Prof. Dr. S. M. Fazlul Haq, Chairman Maa-O-Shishu Hospital, Prof. Fariduddin Ahmed of the Child Health Department, Chittagong Medical College Hospital and CLASS Chairman Osman Gani Mansur. 
All the speakers unanimous observed that we needed to do a lot of things to reach a minimum level of cancer treatment. They pointed out extreme poverty, lack of worthwhile initiative from the Government, very low level of awareness among the people, non-availability and high cost of medicine and inadequate publicity as major causes of the present alarming cancer-situation in the country. They said that as a remedial measure, side by side with Government efforts, voluntary and charitable organizations have to make coordinated efforts to bring the situation to a take-off stage prior to embarking upon more specialized plans in the field. The meeting also eulogized Children Leukaemia Assistance & Support Services (CLASS) for its pioneering role in initiating treatment of cancer-stricken children coming from very poor section of our society. 
All the events in the seminar and rally, were given extraordinary coverage by press and electronic media. Some foreign TV Channels also covered the program. 
Osman Gani Mansur  Chairman of CLASS, Bangladesh

Leukaemia Treatment Facilities Alarmingly Inadequate

Specialists stress need for paediatric haematology unit in every hospital of the country

Expert physicians participating in the first ever international seminar on Paediatric Haematology and Oncology in Chittagong (Bangladesh) expressed deep concern that facilities existing in the country for treatment of this child-killer disease were very inadequate. They stressed the need for introducing a Paediatric Haematology unit in every medical university hospital of the country to meet the needs.
Participating experts claimed that the country had made a good headway in controlling diarrhea and contagious diseases and thus reducing the death rate significantly, while blood cancer an Thalassaemia are a grave threat to our children. It also came up for discussion in the seminar that advanced countries have achieved tremendous success in treating patients with cancer and thus bringing the recovery rate up to seventy-five percent. Whereas our success in this filed is very meagre and frustrating. Evidently, such a situation can be attributed to lack of expert manpower, lack of supply and the high prices for the necessary medicine besides failure of insolvent families to start treatment in time and afford to continue that for a prolonged period as required. 
All the speakers observed that development of expert manpower, setting up of standardized laboratory, creating public awareness and government and nongovernmental patronizing were necessary to overcome the present alarming situation in respect to cancer treatment.
Osman Gani Mansur, chairman of CLASS (parent-initiative Bangladesh)

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News from the parent group in Simferopol

Our Dutch friends do their best (and it seems, sometimes even more) to help our children. Together with commercial companies they organize charitable lotteries, conduct the action "CHANGE FOR GOOD".

Some time ago we asked them to find discharged infusomats as many as possible. These are apparatus, without which up-to-date treatment of oncological diseases is impossible. Infusomats provide the absolutely exact dosage of chemical therapy, protecting mucous membranes of a child against burns. When there is lack of such devices, parents have to sit at the child's bed around-the-clock and count every drop of medicine.

Infusomats in our department have been working for 10 years and totally exhausted their resources.

From beginning of December of last year till middle of January Sergei and Karina actively sought for discharged infusomats. Unfortunately the only ones they managed to find in the clinic were in such worn-out stage that usage of such equipment would be dangerous for patients. They are no longer used in West-Europe. The cost of one new infusion system starts from 1400 EURO. Nevertheless Karina and Sergei now negotiate with the company "B.Braun "about the possibility to donate several infusion pumps to Simferopol children 's haematology. Time will show the results of these negotiations. 

It is difficult to choose words for expression of our gratitude to these people for such great and unselfish help!
Parents Initiative Crimia:  www.hematolog.vinchi.ru
Email:hemato@simfi.net

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Better Medicines for Children

The European Commission proposed a regulatory action on pediatric medicinal products. It is a well known dilemma that the majority of medication applied to children are not officially tested and approved specifically for children. According to current international law most of the chemotherapy used in treating childhood cancer would have to be taken from this specific use. However, drugs used in standardised protocols are well "tested" and thus proven effective for children throughout the years and should be considered safe. The discussion with respect to this issue involves clinicians as well as patients. We reprint the letter by Prof. Stevens, President of SIOP Europe, to the EU on this matter. 

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Announcements

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Miscellaneous

Note this change of address:
SIOP -Secretariat
International Society of Paediatric Oncology
Tongelresetraat 88
NL 5613 DM Eindhoven
Netherlands
Tel.+31 402697544,Fax:+31 402697545
E-mail: secretariat@siop.nl

Making a Mark

Is an exhibition of art by children touched by cancer and blood disorders organized and supported by the Texas Children 's Cancer Center and The Periwinkle Foundation.
Entries must be from children who have been treated for cancer or blood disorders, or from their brothers and sisters. Parents may enter works of children who have died of cancer or related blood disorders. Each Child who submits an entry will receive one free "Making A Mark "-T- shirt on or after Sept.8,2002.
For more information contact:
Texas Children 's Cancer Center
Attn: Carol Herron
6621 Fannin, CC 1410.00
Houston, TX 77030-2399,USA

Patient guide helps to demystify clinical trials

A new reference guide has been developed to help patients facing a serious or life-threatening illness confronting the question: "Should I enter a clinical trial?".
More information about this Patient Reference Guide for Adults can be obtained on the websites: www.ecri.org or www.aahp.org

Visit ChemoAngels.com

You can make a difference! Join the growing group to support people with cancer. 

For details see the Web Site at:  www.ChemoAngels.com

Funding Guide for Child Welfare NGO's in Europe and Across the World
(European Forum for Child Welfare Publications, Bruxelles, April 1999, ISBN 2-930269-10-3) is said to be a valuable help for all groups involved in fundraising. Unfortunately we were not yet able to obtain a copy, but as soon as we are, we will give a more detailed report.

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