Epidemiology of Childhood Cancers: Challenges and Opportunities Prof Tezer Kutluk MD PhD, FAAP President UICC, Union for International Cancer Control

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Epidemiology of Childhood Cancers: Challenges and Opportunities Prof Tezer Kutluk MD PhD, FAAP President UICC, Union for International Cancer Control Moscow, 02 th October 2015

Oncology Hospital Children s Hospital Adult Hospital

About UICC UICC is a membership organisation that exists to help the global health community accelerate the fight against cancer. Founded in 1933 and based in Geneva, UICC s growing membership of over 800 organisations across more than 150 countries, features the worlds major cancer societies, ministries of health, research institutes and patient groups. Together with its members, key partners, the World Health Organization, World Economic Forum and others, UICC is tackling the growing cancer crisis on a global scale. Together we aim to save millions of lives by focusing on what needs to be done by taking the lead in: Convening the global cancer control community Putting cancer on the global health agenda Coordinating high-impact global programmes

Burden of childhood cancer Each year, more than 180,000 children are newly diagnosed with cancer in the world. The exact number of new cases is not known as the number of children with cancer is not registered in many countries. In Turkey, the expected number of childhood cancer is around 2500-3000 cases per year

Survival challenge in childhood cancers Despite ground-breaking advances in diagnosis and treatment of cancer, children with cancer who live in developing countries have less than a 50 per cent survival rate, as opposed to 80 per cent for children living in developed countries.

Ten Leading Causes of Death Among Children Ages 1 to 14, US, 2007

Causes of death in children aged 1-14, Turkey TUIK, 2008 Causes of the death M(%) F(%) Total (%) Heart diseases 29.8 30.4 30.1 Infectious diseases 13.3 13.8 13.5 Cancer 7.2 6.1 6.7 Accidents 6.3 5.6 6.0 Cerebrovascular diseases 3.5 4.5 3.9 Others 39.8 39.6 39.7

Fig 5. Age-specific incidence rates of cancer in in children and adolescents in Europe (ACCIS Study)

Childhood Cancer in MECC Countries Prof. Ayhan Çavdar 1, Prof. Tezer Kutluk 2, 1 Turkish Academy of Sciences (TUBA), 2 Hacettepe University Institute of Oncology Six data sets were from different MECC countries (Data submission as of August 11,2004) Cyprus 1998-2001 Israel 1996-2001 Jews Arabs Egypt 1999-2001 Jordan 1996-2001 USA (SEER) 1999-2001 0 (Italic - no decimal) = Zero Cases, - = 1-2 Cases, n.n (Italic) = 3-15 cases Rates are per 1,000,000 and age-adjusted to the World Standard

Table 16-2. Cancer Incidence Rates (per million) according to the ICCC site for Children under 15 Years (Behavior = Malignant) in MECC Countries. (Data Submission as of August 11, 2004) Table 16-2. Cancer Incidence Rates (per million) according to the ICCC site for Children under 15 Years (Behavior = Malignant) in MECC Countries (Data Submission as of August 11, 2004) Cyprus 1998-2001 Israel: Jews 1996-2001 Israel: Arabs 1996-2001 Egypt 1999-2001 Jordan 1996-2001 US SEER 1999-2001 (13 Reg. Nov 2004 Sub) ICC site Total Male Female Total Male Female Total Male Female Total Male Female Total Male Female Total Male Female All cancers 170,0 161,0 179,5 133,3 150,0 115,8 119,9 137,8 100,9 130,9 150,3 110,7 114,8 130,6 98,1 153,3 159,9 146,3 Leukemia 53,0 52,8 53,2 31,8 34,7 28,7 29,4 33,8 24,8 31,9 33,6 30,2 39,2 46,5 31,4 50,4 54,0 46,6 Lymphoma and reticuloendothelial neoplasms 15,7 20,1 11,2 20,0 26,5 13,1 24,2 32,6 15,4 37,7 56,7 17,7 19,0 23,8 13,9 13,5 16,3 10,5 CNS and miscelaneous intracranial and intraspinal neoplasms 40,1 25,3 55,6 24,2 25,9 22,4 16,5 22,7 10,1 16,9 15,7 18,1 18,9 21,5 16,2 32,5 34,6 30,3 Sympathetic nervous system tumors 22,3 28,4 15,8 15,8 16,0 15,5 12,0 12,4 11,7 9,5 11,8 7,0 6,1 7,0 5,2 11,2 10,3 12,1 Retinoblastoma 0 0 0 2,8 2,3 3,3 2,1 2,0 2,2 2,4-3,5 4,6 4,4 4,9 5,6 6,6 4,6 Renal tumors 11,3-14,6 6,9 8,4 5,3 5,7 4,1 7,3 5,4 4,4 6,4 5,1 4,4 5,8 9,2 8,0 10,3 Hepatic tumors - - 0 1,3 2,2-2,5 2,1 2,9 1,9 1,9 2,0 1,1 1,2 0,9 2,9 2,5 3,3 Malignant bone tumors 7,9 10,2-8,1 9,5 6,7 3,3 4,3 2,3 8,6 8,0 9,3 6,0 7,3 4,7 5,2 5,3 5,1 Soft-tissue sarcomas 9,8 12,1-11,0 12,8 9,1 13,6 12,5 14,7 7,9 9,0 6,7 6,3 7,3 5,2 10,8 11,7 9,9 Germ-cell, trophoblastic and other gonadal neoplasms - 0-3,1 1,5 4,7 3,6 2,8 4,4 2,2 1,8 2,6 3,4 2,7 4,3 5,3 5,4 5,2 Carcinomas and other malignant epithelial neoplasms 3,9 0 8,1 5,6 6,7 4,4 4,3 5,7 2,9 2,4 2,5 2,2 4,3 3,9 4,6 5,7 4,4 7,0 Other and unspecified malignant neoplasms 0 0 0 1,9 2,1 1,6 2,2 2,1 2,2 3,9 3,3 4,5 0,7 0,7 0,8 0,5 0,3 0,6 Not classified by ICCC - 0-1,0 1,3 - - - 0-0 - - 0-0,7 0,5 0,8 0 (Italic - no decimal) = Zero Cases, - = 1-2 Cases, n.n (Italic) = 3-15 cases Rates are per 1,000,000 and age-adjusted to the World Std Million.

Hacettepe Hospitals Cancer Registry 2010 (N=213) Lenfomalar Beyin ve spinal kanal tümörleri Retinoblastoma Lösemiler Yumuşak doku sarkomları Sempatik sinir sistemi tümörleri Epitelyal tümörler Gonad ve germ hücreli tümörler Kemik tümörleri Karaciğer tümörleri Böbrek tümörleri 8 7 6 5 23 21 18 17 29 41 38 0 10 20 30 40 50 60

Survival in 2628 children participated in 15 consecutive studies at St. Jude Children s Research Hospital N Engl J Med 354:166 178, 2006)

The survival rates for children with cancer by four decades at Hacettepe University Hospitals 1.0 0.9 0.8 Survival (%) 0.7 0.6 0.5 0.4 0.3 2000s %59.5 1990s, %49.9 1980s, %36.2 0.2 0.1 0 p< 0.001 1970s, %23.6 0 2 4 6 8 10 12 14 16 18 20 22 24 26 28 30 * % 5-yr survival rates Time (yr) Kutluk MT, Med Ped Oncol 39:317,2002

Turkish Pediatric Oncology Group (TPOG) & Turkish Pediatric Hematolgy Society (TPHD) Pediatric Tumor Registry, 2002-2008 Tumor Type n % I Leukaemia 3795 31,7 II Lymphomas and Reticuloendothelial Neoplasm 2043 17,0 III CNS and Miscellaneous Intracranial & Intraspinal Neoplasm 1606 13,4 IV Sympathetic Nervous System Tumors 895 7,5 V Retinoblastom 372 3,1 VI Renal Tumors 652 5,4 VII Hepatic Tumors 173 1,4 VIII Malignant Bone Tumors 717 6,0 IX Soft-TIissue Sarcomas 772 6,4 X Germ Cell, Trophoblastic & Other Gonadal Neoplasm 562 4,7 XI Carcinomas and Other Malignant Epithelial Neoplasm 333 2,8 XII Other and Unspecified Malignant Neoplasm 66 0,6 Total 11986 100,0 T.Kutluk & A. Yesilipek, TPOG/TPHD adına

Turkish Pediatric Oncology Group (TPOG) & Turkish Pediatric Hematolgy Society (TPHD) Pediatric Tumor Registry, 2002-2008 %65,2 T.Kutluk & A. Yesilipek, on behalf of TPOG/TPHD

Equity for the cancer care Ribeiro RC, et al. The Lancet Oncology August 2008

A Worldwide Public Health Problem 32.6 million people are living with cancer 14.1 million new cases per year around the world It would rise to 21.6 million cases per year in 2030 Cancer killled 8.2 million cases in 2012 around the world Cancer would kill 13.3 million people in 2030 Globocan, 2012 The big opportunity is 30-40% of cancers are preventable Screening is avaiable in some common cancer types Treatment results are improving Supportive & palliative cares can be expanded

NCD Alliance More work is now needed to convince governments around the world to commit to reduce the avoidable deaths from NCDs by 25% by 2025 - a target WHO believes to be achievable. 2015 Millenium Development Goals

UN General Assembly High-Level Meeting on the comprehensive review and assessment of the progress achieved in the prevention and control of NCDs 10 July 2014, New York 10 July 2014, United Nations General Assembly Opening Plenary Session President Eleclt of UICC, Prof. Kutluk, On behalf of Civil Society and UICC

Childhood Cancer ChiCa CHALLENGE Childhood cancer survival rates differ greatly between highincome ( 80%) and low-income settings ( 10%) UICC s RESPONSE Campaign targeted at primary healthcare workers to raise awareness on early Signs and Symptoms of childhood cancer 40 countries and several languages My Child Matters has provided support to 51 hospitals and NGOs in 33 countries since 2005 Capacity building projects Workshops and fellowships in paediatric oncology Building skills in registries, treatment and palliative care

Workshop in Childhood Cancer Key stakeholder discussion on Childhood cancer control in Latin America 8-9 June 2015 The purpose of the meeting was to share experiences and good practices to develop a phased model framework for childhood cancer for the Latin American region. The meeting also provided an opportunity for participants to identify common areas for advocacy within their individual countries and for the region more broadly.

Table. Five-Year Relative Survival (Percent), 2001-2007; by International Classification of Childhood Cancer (ICCC) excluding benign brain and myelodysplastic syndromes - I All ICCC Groups Combined 80.4 I Leukemia 83.1 I(a) Lymphoid leukemia 87.8 I(b) Acute myeloid leukemia 63.5 II Lymphomas and reticuloendothelial neo. 89.5 II(a) Hodgkin lymphoma 95.4 II(b,c,e) Non-Hodgkin lymphoma 85.7 III CNS & misc intracranial & intraspinal neo. 70.8 III(a) Ependymomas and choroid plexus tumor 68.4 III(b) Astrocytoma 84.2 III(c) Intracranial and intraspinal embryonal tumors 60.6 III(d) Other gliomas 50.9 IV Neuroblastoma and other peripheral nervous cell tumors 74.2 IV(a) Neuroblastoma and ganglioneuroblastoma 74.2 V Retinoblastoma 97.5

Table. Five-Year Relative Survival (Percent), 2001-2007; by International Classification of Childhood Cancer (ICCC) excluding benign brain and myelodysplastic syndromes - II VI Renal tumors 88.0 VI(a) Nephroblastoma & other nonepithelial renal tumor 88.4 VII Hepatic tumors 68.8 VII(a) Hepatoblastoma 73.8 VIII Malignant bone tumors 71.7 VIII(a) Osteosarcoma 70.4 VIII(c) Ewing tumor and related sarcomas of bone 70.8 IX Soft tissue and other extraosseous sarcomas 72.9 IX(a) Rhabdomyosarcoma 68.1 X Germ cell & trophoblastic tumors & neo. of gonads 89.5 X(a)Intracranial and intraspinal germ-cell tumor 85.1 X(c) Malignant gonadal germ cell tumor 96.0 XI Other malignant epithelial neo. and melanomas 92.3 XI(b) Thyroid carcinoma 98.9 XI(d) Malignant melanoma 94.6

Table. Opportunities & challenges for action against childhood cancers High income countries Survival rates need to improve from 70-80% to 100% How? More basic & translational research More clinical research Invest on targeted therapies Research on quality of life Middle income countries Survival rates needs to improve from 50-60% to 80% How? Better access to care Need improvement in clinical care Need also more research Low income countries Survival rates needs to improve, depending on the country How? Basic primary cancer care Access to care Need more epidemiological data

UN, 25 September 2015, New York

Global Goals: SDGs; Sustainable Development Goals

Thank you! 2015-18 th November Istanbul, Turkey 'Effective international collaboration' 2015 November Sharjah, UAE First Global Forum of national NCD Alliances 2016-4 th February World Cancer Day We can, I can 2016 - World Cancer Congress e mail: tezerkutluk@gmail.com twitter: @mtk