Advancing Childhood Cancer Care in Developing Countries

1. Temesgen’s Legacy

2. Temesgen in Washington DC

3. The Global Pattern of Childhood Cancer and Advances made in High Income countriesAziza Shad MDLombardi Comprehensive Cancer CenterGeorgetown University HospitalWashington DC, USAandINCTR USA

4. 2020 • 16-20 million new cancer cases each year • ¾ of these in developing or resource-poor countries

5. Developed and Developing CountriesSome Facts • Developing countries • GNP per capita is 350$ • 125 countries in the world • Developed countries • GNP per capita > 25000$ • 10 countries in the world • 1/5 of the people in the highest income countries have 86% of the GNP • The bottom 1/5 have 1% of the GNP

6. Estimates of Population Millions

7. World Population Facts • In 1990, developing countries accounted for 78% of the world’s population and 86% of the world’s children below the age of 15 • It is predicted that by 2030, 90% of the world’s children will live in developing countries

8. The Global Childhood Cancer Burden

9. Patterns of Childhood Cancer • 40-50% of all pediatric cancer in the world is leukemia or lymphoma • treatment largely chemotherapy, but needs expertise • Pattern of cancer particularly different in Sub-Saharan Africa – high incidence of KS and BL • KS largely HIV-related; preventable with HAART • Brain tumors more common in more developed countries – higher incidence than lymphomas • May be partly due to failure to recognize • Retinoblastoma also probably higher incidence but lack of rural data misleading

10. Frequencies (%)

11. USA Whites 83-92 (0-14 yrs) ALL 31% NHL 10% CNS 21% 14 per 100K Data from IARC IICC 1998

12. Uganda 92-95 (0-14 yrs) >66% KS or BL KS 18 per 100K Data from IARC IICC 1998

13. Pattern of Cancer in Ethiopia • There are no reliable statistics on the incidence of pediatric cancer in Ethiopia • With 42 million children under the age of 18 years, there could be as many as 5,628 new cases of pediatric cancer each year in Ethiopia.

14. Pattern of Cancer in Ethiopia • Leukemia • Lymphoma • Retinoblastoma • Wilms tumor • Bone and soft tissue sarcomas

15. Childhood Cancer Survival • USA – approximately 12,400 children and adolescents < 20 years are diagnosed with cancer / yr • 7500 of these children are < 15 years of age • Dramatic progress in treatment of cancer in children in developed countries in the last 25 years • 80% of children and adolescents diagnosed before the age of 20 are cured

16. Relative 5 yr Survival Rates (SEER) All Sites, M and F Percent

17. Five Year Survival Rates (SEER) 1992-8, 0-14 years Percent

19. Childhood Cancer in Developing Countries – The Reality • Cure rate in developing countries currently <30% • Currently, only 20% of all children with cancer receive treatment sufficient to give them a chance for cure

20. Annual Deaths versus Cases NB. Data extrapolated from existing registries – the true situation is probably significantly worse

21. The Problem: a Vicious Cycle Many Patients With Advanced Disease and Many Potential Patients High Mortality Rate Limited Resources POOR ACCESS Unmet need for terminal care LOW CAPACITY

22. Access to Care

23. infections lack of education and health knowledge poverty Problems faced by patients anemia lack of pediatric cancer units lack of transport and communication

24. Late Diagnoses Courtesy, Dr Ashraf

25. Doctors & nurses patients Poor facilities Problems faced By medical personnel Shortage of antibiotics Shortage Of cancer drugs Poor training Few specialized units

26. The Case to treat Pediatric Cancer • Many childhood cancers are highly curable if detected early • Treatment protocols have been adapted for use in low income countries that use readily available and inexpensive generic drugs.

27. The Solution: Build Capacity Education Screening Prevention Lower Mortality Rate Fewer Patients with More Limited Disease and Fewer Potential Patients Less Limited Resources Less need and greater capacity for terminal care GREATER CAPACITY IMPROVED ACCESS

28. The International Network for Cancer Treatment and Research (INCTR) • A not-for-profit, non-governmental organization founded in 1998 by the UICC and the Institut Pasteur in Brussels • The National Cancer Institute, USA assists the INCTR by providing financial, technical and intellectual support • INCTR assists developing countries through a structured program of research collaboration, education and training

29. INCTR Mission Statement INCTR is dedicated to helping build capacity for cancer treatment and research in countries in which such capacity is presently limited ……and to increase the quantity and quality of cancer research throughout the world. Catalysis Concerted Effort Communication Sustainability

30. The Goals • Cancer Cure • Cancer Prevention • Improvement in Quality of life

31. The Mechanism • Establishment of long term collaborative projects which will have an immediate impact on prevention or treatment • Associate such projects with education and training • Use information collected in the course of such projects as a foundation on which to build future endeavors

32. The Tool: Collaboration Multiple networks: organizations, institutions, experts, supporters

33. INCTR’s Network Offices and Branches Collaborating Units

34. INCTR PEDIATRIC ONCOLOGY PROGRAM • Education and Training • Clinical Research • Palliative Care

35. PEDIATRIC CANCER IS OUR PRIORITY

36. EDUCATIONAL ACTIVITIES • Pediatric Oncology Training Programs • Educational Workshops • Fellowship Program • Visiting Experts Program • Collaborative Efforts with other Oncology Groups • Development of Educational Material • Telemedicine • I-Path Program

37. TRAINING AND EDUCATION • Practical Management of Common Pediatric Cancers • Supportive Care Program Guidelines for management of complications of treatment, blood transfusions, febrile neutropenia

38. CLINICAL TRAINING AND RESEARCH

39. Projects: Childhood Cancer RETINOBLASTOMA Early detection and treatment OSTEOSARCOMA Treatment of metastatic disease LEUKEMIA (ALL) Treatment and molecular studies BURKITT’S LYMPHOMA Treatment and molecular studies PALLIATIVE CARE

40. MUMBAI x MUMBAI • DELHI DELHI • CHENNAI CHENNAI

41. PALLIATIVE CARE

42. IMPORTANCE OF PEDIATRIC PALLIATIVE CARE • 60% of children will die of their disease in the setting of low and middle income countries

43. PAX INITIATIVES • Nepal (Kathmandu and Bhaktapur) • India (Hyderabad) • Tanzania (Dar es Salaam) • Pakistan (early stages) • Brazil • Collaborative Efforts • INCTR and MECC • Educational initiatives • 3rd edition of Guidelines published

45. GOALS FOR ETHIOPIA • Train doctors to recognize and identify early stage cancers • Train a core group of pediatricians to treat patients using cost effective protocols designed for developing nations • Help establish a sufficient supply of essential chemotherapy drugs • Increase capacity to offer palliative care to patients with incurable disease

46. GOALS FOR ETHIOPIA • Twinning program with Georgetown University and INCTR for training and education • Curriculum for Fellowship Program in Pediatric Oncology and Palliative Care • Telemedicine education • Center of Excellence in Pediatric Cancer

47. Participation

48. CURE FOR EVERY CHILD