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NGO’s in struggle with malignant neoplasms in children

Section of non-governmental organizations, 28-29 April 2011

The theoretical and practical conference “Topics and Issues of Pediatric Oncology” was held in Kiev on April 28–29, 2011 and was attended by international participants.

Kiev-Picture(1)The conference consisted of two parts: one for clinical pediatric oncology and the other for representatives from non-governmental and volunteer organizations (NGO’s). The conference was attended by representatives from the Ukraine, Russia, Belarus, Italy and Austria. The total number of participants reached 130, including 50 representatives of NGO’s. Among the distinguished guests of the conference were 16 representatives of parent organizations.

First of all, I would like to mention that we changed the format of the event for NGO’s and volunteers in comparison to the previous conferences. We invited the most experienced organizations to present their most successful projects, so that young organizations and volunteer groups could learn from the others and get interesting information to be adapted to their own practice. As an example: Our foundation ‘Zaporuka’ started to implement the interesting project “Saturday Cook” of the ‘Pchelka-Foundation’ from Odessa. According to our educators we come together on Saturdays to cook something simple, useful and delicious jointly with the patients and their parents. Another example was the very interesting experience about how to organize a charity concert (presented by organization from Dnepropetrovsk). A month later the foundation from Zhitomir used this example and organized a charity concert in their city devoted to the International Children’s Day (June 1).

The other topic of the conference was to present projects which could unite organizations from different regions around one problem that can be solved by common efforts. Thus ‘Zaporuka’ presented a project on early cancer diagnosis in children “Let’s Anticipate the Trouble” and asked the regional foundations and volunteers to join in. In a month’s time, a special seminar for pediatricians will be held in the city of Konotop (Sumy region, Ukraine), organized together with the ‘Viden’-foundation. In June another seminar for pediatricians will be held in Lutsk (Volyn region), in July one in the Ivano-Frankivsk region, and in August in the Rivne region. These organizations contacted the local authorities with the proposition to cooperate on the medical level and to organize special training seminars for the pediatricians and family doctors. As it turned out the local authorities are really interested and are ready to cooperate. The Russian organizations were also very interested in providing a similar project in their country as they have the same problems with early diagnosis of childhood cancer and they asked us to share with them all informational materials we prepared with the specialists.

The participants of the conference were thankful for the experience they could get from the foundations in their neighboring countries such as Russia and Belorussia, Italy and Austria. The foundation from Russia presented the comprehensive rehabilitation program of children affected by cancer in their hospitals: psychological, educational and recreational services. It was important for the Ukrainian organizations to learn about this experience as in the Ukraine there are only a few pediatric oncology departments which can provide such services  – thanks to their sponsors. Another good foreign example was presented by the head of the Belarussian Children’s Hospice, who shared their experience of establishing the service of palliative and hospice care. This issue is extremely important for the Ukraine as there are no specialized hospices for children in the country. Thus the Ukrainian Foundation ‘Krab’ decided to start providing this service based on the Belorussian experience.

As a result of the conference, the participants decided to postulate a resolution to the Ministry of Healthcare of the Ukraine to lobby with the politicians and promote the really important issues of pediatric oncology departments in order to improve the situation of children with cancer:


Malignant tumors in children are a burning problem in the modern society. Although malignancies are rare in children, they occupy the 5th place in the death rate of children. Modern standards of treatment guarantee a 70% survival rate, while in the Ukraine only 55% can be achieved. Every fourth child dies during the first year after cancer diagnosis. Also, malignant tumors in children often result in disabilities. In the Ukraine, children who are diagnosed with a malignant disease are treated in specialized departments (oncologic and hematologic) or in specialized hospitals depending on the localization of the malignancy. However, only 80% of the children diagnosed with cancer receive this special treatment, that is, not everybody has access to appropriate medical care.

The current state of pediatric oncology in the Ukraine is caused by several factors: State policy in the sphere of pediatric oncology is not implemented in an appropriate way, funding is not enough and there is no access to the best treatment technologies.

After listening to and discussing the reports of the scientists and experts, the conference resolves the following:

  1. To ask the Ministry of Health of the Ukraine to promote regular funding of state programs assisting children affected by cancer;
  2. To propose to the Ukrainian Ministry of Health that pediatric oncology should be considered a priority at the regional level of the healthcare system in the Ukraine;
  3. To propose to the Ukrainian Ministry of Health to establish regional (interregional) departments for pediatric oncology in order to use the scarce resources efficiently and to treat children affected by cancer according to modern standards;
  4. To refer to the principal out-of-staff experts of the Ministry of Health of the Ukraine to work out mechanisms of cooperation between the hospitals of the 3rdand 4thlevels of accreditation regarding diagnosis and treatment of children affected by malignant tumors;
  5. To propose that a National Cancer Institute may be established in order to unite the specialists working in the field of pediatric oncology;
  6. To hold scientific conferences about pediatric oncology every two years (The next conference shall be organized in Kiev in 2013);
  7. To suggest to the Ministry of Education and Research, Family and Sport of the Ukraine to introduce the system of distant school education for children who undergo inpatient treatment;
  8. To demand from the Ministry of Health Care of the Ukraine to employ psychologists and social workers in all oncology and oncohematology departments of the Ukraine;
  9. To suggest to the Ministry of Health Care of the Ukraine to provide departments (centers) of palliative and hospice care for children;
  10. To initiate the establishment of a board of guardians at the departments where children affected by cancer undergo treatment;
  11. To suggest to the Ministry of Health Care and the Ministry of Education and Research, Family and Sport of the Ukraine to initiate a national information campaign on prevention of oncological diseases among the young (we suggest creating a working group on the issue);
  12. And to support information and educational campaigns on early detection of childhood cancer.

The report was written by Natalia Onipko (president of the Ukrainian National Foundation ZAPORUKA),,
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