Total XVII? Pediatric cancer survival. What does it mean to children? What does it mean to children?

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1 St. Jude Grand Rounds: 5 January 26 St. Jude Grand Rounds: 5 January 26 Global Pediatric Oncology Global Pediatric Oncology Introduced by William E. Evans, PharmD Scott Howard, MD, MS Asst. Member, Hematology/Oncology Dir. of Clinical Trials, International Outreach Program Scott Howard, MD, MS St. Jude in 1962 Cancer Survival Rates Wilms tumor Neuroblastoma Osteosarcoma ALL Cancer Survival Rates 1962 vs St. Jude in 22 Wilms tumor Neuroblastoma Osteosarcoma ALL 1

2 Cancer Survival Rates 1962 v 22 v 242? ? Wilms tumor Neuroblastoma Osteosarcoma St. Jude in 242 ALL Cancer Survival Rates 1962 v 22 v 242? Survival of children with ALL at St. Jude XV (2 Present) n= XIII XIV ( ) n=465 XI XII ( ) n=546 X ( ) n= ? V IX ( ) n= I IV ( ) n=9.1 1 Wilms tumor Neuroblastoma Osteosarcoma ALL Years from Diagnosis 2

3 Survival of children with ALL at St. Jude XV (2 Present) n=254 Total XVII? XIII XIV ( ) n=465 XI XII ( ) n=546 X ( ) n= V IX ( ) n=828.3 Ching-Hon Pui.2.1 I IV ( ) n= Years from Diagnosis Pediatric cancer survival Event-free survival (%) What does it mean to children? What does it mean to children? HIC Children treated per year 53, Children who survive 4, Children who die 13, Survival rate 75% HIC Children treated per year 53, Children who survive 4, Children who die 13, Survival rate 75% No child should die in the dawn of life Danny Thomas 3

4 What proportion of children live in low-income countries? a. 1/5 b. 2/5 c. 3/5 d. 4/5 What proportion of children live in low-income countries? a. 1/5 b. 2/5 c. 3/5 d. 4/5 What proportion of childhood cancer occurs in LIC? How does this compare with other health problems in LIC? Cases per year Proportion Children with cancer per year Proportion HIC, childhood CA 53, 2% HIC LIC 53, 211, 2% 8% LIC, childhood CA Rotavirus 211, 6, DEATHS 8% 99.99% in LIC Malaria 1,,, 99% in LIC Should we even try to treat childhood cancer in LIC? Costs - cancer care is expensive Difficulties hospital infrastructure, access to drugs, trained personnel Priorities Competing health problems: infections (clean water, vaccines, parasites, HIV), malnutrition, maternal health Futility - many patients die despite our best efforts Clean water is very important 4

5 Hoover Dam Should we even try to treat childhood cancer in LIC? Individuals are important Cancer is the leading cause of diseaserelated death in HIC, and will be in LIC Dramatic improvement is possible The future of pediatric oncology depends on international collaboration Patients for clinical trials Epidemiology studies Causes of disease-related death in children Hoover Dam 5 45 El Salvador, GDP $4,71 Brazil, GDP $7,537 U.S., GDP $35,182 Disease-related death in children (%) Respiratory Congenital Cancer Infection Malnutrition Respiratory* Congenital Other Diseases* Disorders Many holes in the dam Many holes in the dam Malaria Childhood cancer Malnutrition HIV Respiratory infections 5

6 Many roles are needed World Vision is drilling wells Malaria basic research, mosquito control, prophylaxis Childhood cancer oncology, surgery, radiation oncology, radiology, IDS, nursing, pharmacy, basic research Malnutrition agriculture, nutrition HIV education, public health, IDS Respiratory infection vaccines, health system World Vision educates communities about clean water, nutrition, and diarrhea treatment Many holes in the dam World Vision St. Jude Malaria Childhood cancer Malnutrition World Vision HIV World St. Jude Vision Respiratory infections Global Pediatric Oncology Points of Interest Substantial needs Potential impact The way forward Research opportunities Event-free survival (%) Pediatric cancer survival

7 Pediatric cancer survival gap between high- and low-income countries Pediatric cancer survival gap Event-free survival (%) High-income countries Low-income countries Event-free survival (%) High-income countries Survival gap Low-income countries HIC LIC What does it mean to children? Children treated per year 53, 211, Children who survive 4, 53, Children who die 13, 158, Survival rate 75% 25% LIC have 8% of children with cancer and 92% of children who die of cancer Event-free survival (%) Childhood ALL survival gap High-income countries Survival gap Low-income countries Event-free Survival in Childhood ALL, Recife JAMA 24, 291: Early period Time after diagnosis (years) 5 St. Jude in 198 7

8 St. Jude Total 13 Survival gap Early period Time after diagnosis (years) Patients at risk Recent period Middle period Early period Global Pediatric Oncology Points of Interest Substantial needs Potential impact The way forward Research opportunities What does it mean to children? HIC, all cancers LIC, all cancers If LIC results were the same as HIC Patients treated each yr 53, 211, 211, Patients who survive 4, 53, 158, +15, Survival rate 75% 25% 75% +5% Global Pediatric Oncology Potential Impact Improved EFS (quantity of life) Improved palliative care (QOL) Oncology program development Educational programs Clinical research that benefits everyone Collaboration with scientists and pharma (tumor banks, large numbers of patients for clinical trials) Survival of children with ALL at St. Jude XV (2 Present) n=254 XIII XIV ( ) n=465 XI XII ( ) n=546 X ( ) n=428 8% improvement in 4 years! V IX ( ) n=828 I IV ( ) n=9 ALL in Honduras 2-year EFS by period , 22-23, 23, % improvement in 5 years! Years from Diagnosis 8

9 2-year EFS in children with ALL in Recife, Brazil 35% improvement in 15 years! Global Pediatric Oncology Points of Interest Substantial needs Potential impact The way forward St. Jude opportunities Pui and Ribeiro, NEJM 25 The way forward Why not treat everyone at St. Jude? The way forward Why not treat everyone at St. Jude? We would need 528 St. Jude Children s Research Hospitals It would cost about $32,,, per year for medical care only Treatment away from home imposes many hardships: transportation, housing, separation of families, loss of job, language barriers, cultural changes, visa issues The way forward Why not improve results in LIC? Feasible Cost-effective Reduces the burden on patients and their families Creates local expertise Partners help others develop 9

10 Global Pediatric Oncology The way forward Non-profit foundations Twinning programs Clinical research Continuing education Recife, Brazil Recife is in the Pernambuco province of Brazil Per capita annual income is $1,49 (in the US it is $35,) Núcleo de Apoio à Criança a com Câncer (NACC) in Recife, Brazil Global Pediatric Oncology The way forward Non-profit foundations Twinning programs Clinical research Continuing education NACC ALSAC Twinning programs between centers in HIC and LIC St. Jude Children s s Research Hospital ( Memphis, USA Instituto Materno-Infantil de Pernambuco, Recife,, Brazil American Lebanese Syrian Associated Charities (ALSAC), Memphis, USA Núcleo de Apoio à Criança com Câncer (NACC, Recife,, Brazil Sources of funding for childhood cancer in Recife, Brazil 5% Government 5% NACC 45% St. Jude Annual budget: $1,436, St. Jude: $72, (5%) 1

11 Global Pediatric Oncology The way forward Nosso Time Non-profit foundations Twinning programs Clinical research Continuing education St. Jude Total What causes the survival gap? Treatment failure in the 198s Survival gap Early period Recife St. Jude Time after diagnosis (years) Patients at risk Recent period Middle period Early period Abandonment Toxicity Relapse Why is there a survival gap? Philippines Honduras St. Jude Advice from Goethe Knowing is not enough, we must apply. Willing is not enough, we must do. Abandonment Toxicity Relapse Metzger et al, Lancet 23 and Unpublished observations 11

12 Improved ALL Outcome in Recife, Brazil Transportation, food, social worker Closing the survival gap Abandonment 8 6 Recife St. Jude 's Early 199's Late 199's Improved hospital services, ICU beds Closing the survival gap Treatment failure from any cause (1 year) Recife St. Jude 's Early 199's Late 199's 1 9 Event-free Survival in Childhood ALL, Recife JAMA 24, 291:2471 What does it mean to children? 8 7 Recent period Patients treated Patients who survive Survival rate at risk Time after diagnosis (years) Middle period Early period 5 HIC, all cancers LIC, all cancers Treat LIC patients in Recife Treat LIC patients in HIC 53, 211, 211, 211, 4, 53, 127, +74, 158, +15, 75% 25% 6% +35% 75% +5% 12

13 Childhood ALL survival gap Childhood AML survival gap Event-free survival (%) High-income countries Survival gap Recife Low-income countries Event-free survival (%) High-income countries Survival gap Recife LIC year event-free survival for ALL /93/ Recife El Salvador Guatemala PART I: CONTEXT, STAKEHOLDERS & RESOURCES CONCLUSION PART II: RESULTS PART III: STRATEGY AND PROSPECTS Steps To Implementation Of A National Pediatric Oncology Program In Low-Income Countries From S.C.Howard & al. Strategies to improve outcomes of children with cancer in low-income countries. Eur J Cancer, 25, 41, PART I: CONTEXT, STAKEHOLDERS & RESOURCES CONCLUSION Steps To Implementation Of A National Pediatric Oncology Program In Low-Income Countries From S.C.Howard & al. Strategies to improve outcomes of children with cancer in low-income countries. Eur J Cancer, 25, 41, Stages Pilot project Pediatric cancer unit Center of excellence Satellite centers Regional program National program Referent unit EMBRYONIC/ DEPENDANT FONCTIONAL/ DEPENDANT Satellite center INEXISTANT INEXISTANT INEXISTANT EMBRYONIC/ DEPENDANT FONCTIONAL/ Purpose A successful pilot project that demonstrates that childhood cancer can be cured in the local setting Centralizes resources devoted to the treatment of childhood cancer to improve efficiency and quality of care Development of the pediatric cancer unit into a center of excellence Extend the benefits to a wider geographical area and reduce the burden of travel on families Increased quality of care and independence of centers of excellence and satellite centers with coverage of a wide geographic area Nationwide networks of centers. National PO association for protocol design, continuing education, advocacy activities Management of pediatric cancers in Senegal A. Jenner, J. Lyonnard, G. Mercier, T. Miklavec Sanisphere Management of pediatric cancers in Senegal A. Jenner, J. Lyonnard, G. Mercier, T. Miklavec Sanisphere 13

14 PART I: CONTEXT, STAKEHOLDERS & RESOURCES PART II: RESULTS PART III: STRATEGY AND PROSPECTS CONCLUSION Steps To Implementation Of A National Pediatric Oncology Program In Low-Income Countries From S.C.Howard & al. Strategies to improve outcomes of children with cancer in low-income countries. Eur J Cancer, 25, 41, Guatemala Program Annual Budget (US$1) St. Jude Total Budget Stages Referent unit Satellite center Purpose Pilot project EMBRYONIC/ DEPENDANT INEXISTANT A successful pilot project that demonstrates that childhood cancer can be cured in the local setting Pediatric cancer unit FONCTIONAL/ DEPENDANT INEXISTANT Centralizes resources devoted to the treatment of childhood cancer to improve efficiency and quality of care Center of excellence INEXISTANT Development of the pediatric cancer unit into a center of excellence Satellite centers EMBRYONIC/ DEPENDANT Extend the benefits to a wider geographical area and reduce the burden of travel on families Regional program FONCTIONAL/ Increased quality of care and independence of centers of excellence and satellite centers with coverage of a wide geographic area Management of pediatric cancers in Senegal A. Jenner, J. Lyonnard, G. Mercier, T. Miklavec Sanisphere National program Nationwide networks of centers. National PO association for protocol design, continuing education, advocacy activities PART I: CONTEXT, STAKEHOLDERS & RESOURCES PART II: RESULTS PART III: STRATEGY AND PROSPECTS CONCLUSION Steps To Implementation Of A National Pediatric Oncology Program In Low-Income Countries From S.C.Howard & al. Strategies to improve outcomes of children with cancer in low-income countries. Eur J Cancer, 25, 41, Global Pediatric Oncology The way forward Stages Referent unit Satellite center Purpose Pilot project EMBRYONIC/ DEPENDANT INEXISTANT A successful pilot project that demonstrates that childhood cancer can be cured in the local setting Pediatric cancer unit FONCTIONAL/ DEPENDANT INEXISTANT Centralizes resources devoted to the treatment of childhood cancer to improve efficiency and quality of care Center of excellence INEXISTANT Development of the pediatric cancer unit into a center of excellence Satellite centers EMBRYONIC/ DEPENDANT Extend the benefits to a wider geographical area and reduce the burden of travel on families Regional program FONCTIONAL/ Increased quality of care and independence of centers of excellence and satellite centers with coverage of a wide geographic area National program Nationwide networks of centers. National PO association for protocol design, continuing education, advocacy activities Non-profit foundations Twinning programs Clinical research Continuing education Management of pediatric cancers in Senegal A. Jenner, J. Lyonnard, G. Mercier, T. Miklavec Sanisphere 14

15 International Online Conference Cure4Kids Rabat, Morocco Casablanca, Morocco Cure4Kids Cost SIOP 25 Presentation Final Slide Free A Plea If you participate in a twinning program already or would like to do so, please scott.howard@stjude.org Global Pediatric Oncology The way forward - problems Hundreds of sites in LIC would like a twinning partner St. Jude has limited staff and resources We need help! 15

16 Dominican Republic Dominican Republic Dominican Republic Michael and Eileen Lauzardo Thank you MISPHO! Facilitating twinning between centers in HIC and LIC Shands Children's Hospital at the University of Florida, Gainesville ( Hospital Infantil Dr Robert Reid Cabral, Santo Domingo, Dominican Republic Keira Grace Foundation ( Gainesville Fundación n de Amigos contra el Cáncer C Infantil Inc., Santo Domingo 16

17 Thank you Keira Grace Foundation! Gainesville-Santo Domingo Dominican Republic Thank you MISPHO! MISPHO POGO Keira Grace Foundation, Shands Children Children s Hospital Global Pediatric Oncology Points of Interest Substantial needs Potential impact The way forward Research opportunities 17

18 Global Pediatric Oncology Research Opportunities Clinical research large patient numbers, problems unique to LIC (e.g. abandonment) Epidemiologic research ethnic, cultural, and geographic diversity, differences in disease biology (Burkitt lymphoma) Basic research access to tumors that are rare here but more common elsewhere (extra-ocular retinoblastoma) Technology transfer research Old Database Metzger et al. Lancet 23 New Database POND Pediatric Oncology Networked Database (username practice Password practice ) 18

19 POND Architecture Panamá Nicaragua Costa Rica POND Dominican Republic Honduras El Salvador Guatemala Sharing Data in the Central American Pediatric Oncology Group (AHOPCA) Problem solved! AHOPCA Panamá Nicaragua Costa Rica Hodgkin lymphoma POND Dominican Republic Honduras Database El Salvador Guatemala Local data entry Local queries PI queries PI reports Who will put the data in the database? POND Implementation Importance of data managers AHOPCA, Paraguay, Morocco Data managers are absolutely essential Database No data Manager!!! The support of POGO (the Pediatric Oncology Group of Ontario) to hire and train data managers in the AHOPCA countries was CRITICAL 19

20 Many holes in the dam Many holes in the dam Database Data Manager Medical record system Documentation culture Database Data Manager Data managers put the data in POND before it gets lost here Many holes in the dam Medical record system Documentation culture Database Data Manager 2

21 Central American patients registered in POND About 23 children per year should be treated for cancer in CA ALL in Honduras 2-year EFS by period , 22-23, 23, % improvement in 5 years! 21

22 POND Cost Free Great discoveries and improve- ments invariably involve the cooperation of many minds. but one must have: 1) Commitment to collect data 2) Data manager 3) Data manager training 4) Internet connection Dr. Howard's Children Alexander Graham Bell International Outreach Program Guatemala education campaign: Cancer is not contagious; love is 22

23 ? End Scott Howard, MD, MS Questions and Answers Some questions were asked without a microphone nearby and may be difficult to hear, but they are presented here. More medical education materials are available at: You may print and download content for personal educational use only. All material is copyrighted by the author of the content or St. Jude Children s Research Hospital. See legal terms and conditions at 23