Making a Difference: Strategies for Success

1. Making a Difference: Strategies for Success Aiming for effective cancer control in countries with limited resources – a collaborative venture Annual meeting 2005, Chennai, India

2. Why Cancer? • In 2002, more than half of the 11 million estimated patients with cancer were in developing countries which have perhaps 5% of global resources • Developing countries still have a lower incidence of cancer than affluent nations, but will account for an ever increasing fraction of the global cancer burden: NOW IS THE TIME FOR ACTION • The WHA has approved a resolution (May 2005) recommending that countries develop and implement cancer control plans

3. Crude Incidence; Cases Per 100,000 per annum Thousands per annum 2002

4. Estimates of All Cancer Cases, Males and Females, Trends Included Thousands per Annum Influence of aging and increases in population size

5. 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

6. 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

7. 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

8. The Goals • To prevent as many preventable cancers as possible • To cure as many curable cancers as possible • To improve the quality of life of patients with cancer at all stages of their disease

9. 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

10. The Tool: Collaboration

11. INCTR’s Network Offices and Branches Collaborating Units

12. Advisory Board • Special Panel of cancer experts from countries with limited resources • Provides advice on INCTR activities • Selects of INCTR Awardees • Determines venues of Annual Meetings • Disease-specific experts • Scientific review of projects and participation in strategy group meetings

13. Offices and Branches • USA, UK, France, Brazil, Egypt, Tanzania, Saudi Arabia, India, Nepal • Regional/national coordination of INCTR programs and projects • Access to regional/national resources • Expansion of local capacity • Guiding principles : INCTR Charter

14. Associate Membership • Corporate Membership (3) • Partnerships with the corporate world • Institutional/Organizational Membership (109) • Provides access to a broad range of expertise • Participation in INCTR activities • Individual Associate Membership (75) • Contributions, financially or in kind • More important role in the future

15. Partnership with NCI • OIA has sponsored many of INCTR’s educational meetings, courses or specific training programs in INCTR-recognized training centers • Recently a collaboration has been developed with MECC – joint meeting in Cyprus

16. Corporate Partnerships • Eli Lilly • INCTR has provided off-site data management for a randomized trial sponsored by Lilly in locally advanced Cx cancer in 10 developing countries • Support of Clinical Trials Workshops • CTIS • Provided INCTR with a powerful web Portal • Is helping INCTR to develop clinical data bases and to IT-based training tools

17. Collaboration with Other Organizations • ACS – Partnership: Palliative care, ACSU • UICC – Steering Committee for MyChildMatters (Sanofi-Aventis) • WHO – Technical Committee for Global Cancer Control • Institute of Medicine – Report on Cancer Control • IAEA – Collaboration in breast cancer and potentially, expanded cancer programs • ESO – Plan to hold joint meetings • Global Alliance for the Cure of Children with Cancer –Organizations/institutions for pediatric cancer • AORTIC – Discussion phase

18. Strategy Groups International groups identify and implement disease specific activities in prevention, treatment, education Cx Cancer, August 2004 Implementation Meeting, African BL, Tanzania, August 2004

19. Active Projects (8) • Reasons for late presentation of retinoblastoma – 15 centers in 11 countries • Survey of breast cancer management - 4 countries • Cx Cancer screening (with IARC) – 2 countries, 4 sites • Treatment of advanced cervical cancer (with Eli Lilly) – 10 centers in 10 countries • Treatment of metastatic osteosarcoma - 6 countries • Treatment and study of ALL in India - 4 centers + • Treatment and study of Burkitt’s Lymphoma in Africa - 4 centers in 3 countries • Provision of palliative care – Nepal (3 centers)

20. Projects in Planning Phase (6) • Treatment of locally advanced retinoblastoma • Treatment of locally advanced breast cancer • Treatment of locally advanced Cx cancer • Extending cervical cancer screening into the health care structure – India • Expansion of palliative care program to Tanzania and India • Cancer control in Cameroon

21. Relevant Meetings and Expert Visits in Last Year

22. New Funded Projects • INCTR collaborating centers and branches have successfully competed in the UICC MychildMatters program funded by Sanofi-Adventis and NCI: being awarded 4 of the 14 projects (Egypt: 2, Tanzania, 1, Philippines, 1) • INCTR designated by Steering Committee to assist these projects

23. New Funded Projects • INCTR and the American Cancer Society will work together in promoting palliative care in India

24. INCTR Strategies • Conduct demonstration projects in specific areas of cancer control (cancers in women and children highest priority) • Use centers involved as training sites to improve regional and national coverage • Use clinical trials as a complete approach to training, education, research and patient care • Maximize use of IT in training, education, monitoring and measuring outcomes

25. Non-Governmental Organization Visiting Experts External Training FUNDING E-learning? Government or Local NGO Locally Run Demonstration Project Education of other primary health care workers or trainees Dissemination to Health Care System Dissemination to other centers

26. Population Coverage: Example (Wide Application) • 700 cases of BL in Tanzania • Identify centers capable of care • Develop improved diagnostic and referral systems • Provide training where necessary • Develop targets for extending care to 80-90% of cases Year 1Year 2Year 3

27. Value of Clinical Trials • Improved access of patients and professionals to the limited number of experts: • Carefully designed treatment approach • Diagnosis and staging must be standardized • Supportive care must be addressed • Loss to follow up must be reduced • May include non-therapeutic components (epidemiology, molecular characterization) • Data must be accurately collected (surveillance) • Increased communication and hence learning among all participants • Instills good habits of clinical care, and a research perspective in junior staff – wide impact • Provides a local data base that can be built upon

28. Designed for a specific population in the context of available resources Usually entails collaboration and mutual learning Associated with quality assurance and ethical review Identifies deficiencies Associated with outcome measures Generates new information Based on available evidence – may be from a different population and with different resources Rarely entails collaboration or learning No quality control or ethical review No identification of deficiencies No outcome measures No new information Comparison of Treatment Guidelines and Clinical Trials Research Guidelines

29. Obstacles to Conducting Clinical Trials in LR Settings • Lack of academic mindset – health care is increasingly seen as a business or service by practitioners and outcome is ignored • Lack of financial or professional rewards • Lack of required infrastructure and funds • Lack of institutional will to collaborate • Lack of incentive to perform trials (except financial inducement by Pharma) • Inability to ensure good follow-up

30. Disadvantages of Joining Existing Cooperative Groups • Can join existing groups based in affluent countries, or Pharma trials but… • Many, perhaps most, such trials will not address locally important problems • Patients may not be comparable to those entered in affluent countries • Limited opportunities to play a role in identifying or designing studies • May be limited availability of resources (unless Pharma sponsored, when sustainability an issue) • Regulatory differences can inhibit collaboration

31. Maximizing IT - 2006 • Use telesynergy or internet based lectures and discussions • Provide presentations, documents and training modules on portal • Identify sources of funding (Fund Raising Committee) consistent with the new IT era

32. IT – the Nervous System of the Global Community • New major projects underway that require collaboration and standardization: • Cancer Control Planet (NCI) • caBIG (NCI project to develop a universally valuable and collaborative bioinformatics grid) • Requires standards for communication – syntax, vocabulary, semantics, messaging etc. • Various systems exist and are being harmonized, particularly in USA – CDISC, HL7, BRIDG • Global Community of Practice – WHO, UICC, BCC • INCTR will work with partners, especially CTIS, to try to ensure that developing countries are involved from the beginning

33. Annual Meeting 2005 • Award lectures (Dennis Wright, Suresh Advani) • Individual presentations (posters, oral) • Reports on ongoing activities • Keynote lectures • Educational sessions and workshops on regionally important cancers • Consensus panels – hereditary breast cancer • Multidisciplinary conference – DLBCL • Meet the expert sessions • Members meeting Local Host: Cancer Institute (WIA), Chennai, India

34. Thanks to Sponsors • Cancer Institute (WIA), Chennai • Office of International Affairs, NCI • Pasteur Institute, Brussels • Leukemia and Lymphoma Society (workshop on ALL) • Susan Komen Foundation (workshop on breast cancer) • Jiv Daya Foundation • Agfa, AstraZeneca, GlaxoSmithKline, MSD • Local sponsors

35. Special Thanks • Drs Shanta, Rajkumar, Sagar, and Local Committee • Organizing/Scientific Committee, Indian National Committee and INCTR India (Dr Bhargava) • INCTR administrative staff: Cedric, Elisabeth, Béné and Suzanne, Tom • INCTR Program Directors: Melissa Adde, Ama Rohatiner, Aziza Shad, Stuart Brown, Kishor Bhatia and Marina Gutierrez, Sabine Perrier-Bonnet • All speakers and presenters • Delegates • All who have contributed to INCTR activities or collaborated in the past years

36. Countries Associated with INCTR