Global Advocacy: From Anecdote to Evidence


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Global Advocacy: From Anecdote to Evidence

  1. 1. Felicia Marie Knaul, PhD Harvard Global Equity Initiative, Global Task Force on Expanded Access to Cancer Care and Control in LMICs Union for International Cancer Control Tómatelo a Pecho A:C. México Mexican Health Foundation Pa#ent  Advocacy  Scholar  Seminar   Harvard  Faculty  Club,  Cambridge   April  26th,  2013   Global  Advocacy:   From  Anecdote  to  Evidence:  
  2. 2. From anecdote … … to evidence
  3. 3. The night of my high school prom visiting my father, Sigmund Knaul, at Mount Sinai Hospital, Toronto a few weeks before his death from cancer. May 1984.
  4. 4. In the children’s cancer ward of the Hospital Pediátrico de Sinaloa promoting Sigamos Aprendiendo en el Hospital. Culiacán, late 2005.
  5. 5. January,  2008  June,  2007  
  6. 6. Battling sepsis in the Médica Sur Hospital. Mexico City. July 2008
  7. 7. Launching a program at the Mexican Health Foundation the day I got sepsis. July 2008.
  8. 8. Juanita: Advanced metastatic breast cancer is the result of a series of missed opportunities
  9. 9. International seminar celebrating the Seguro Popular and universal coverage of breast cancer treatment. October, 2011. With a patient who traveled from Guadalajara to share her story. Mexico City.
  10. 10. With Julie Gralow visiting a terminal patient in the Hospital Regional de Ciudad Guzmán. Jalisco, México. August 2011.
  11. 11. From anecdote … … to evidence
  12. 12. GTF.CCC Members  
  13. 13. = global health + cancer care
  14. 14. Closing the Cancer Divide: An Equity Imperative I: Much should be done II: Much could be done III: Much can be done 1: Innovative Delivery 2: Access to Affordable Medicines, Vaccines & Technologies 3: Innovative Financing: Domestic and Global 4: Evidence for Decision-Making 5: Stewardship and Leadership
  15. 15. Challenge and disprove the myths about cancer M1. Unnecessary M2. Unaffordable M3. Impossible M4: Inappropriate • Should, • Could, and • Can….. ….be Expanding access to cancer care and control in low and middle income countries:
  16. 16. "  Mirrors the epidemiological transition "   LMICs increasingly face both infection- associated cancers, and all other cancers. The Cancer Transition "   Cancers increasingly only of the poor, are not the only cancers affecting the poor.
  17. 17. #2 cause of death in wealthy countries #3 in upper middle-income #4 in lower middle-income and # 8 in low-income countries More than 85% of pediatric cancer cases and 95% of deaths occur in developing countries. For children & adolescents 5-14 cancer is  
  18. 18. Source: Knaul, Arreola, Mendez. estimates based on IHME, 2011. The cancer transition in LMICs: breast and cervical cancer 53% 20%19% -31% 0% LMIC’s High income % Change in # of deaths 1980-2010LMICs account for >90% of cervical cancer deaths and >60% of breast cancer deaths. Both diseases are leading killers – especially of young women.
  19. 19. Cancer is a disease of both rich and poor; yet it is increasingly the poor who suffer: 1.  Exposure to risk factors 2.  Preventable cancers (infection) 3.  Treatable cancer death and disability 4.  Stigma and discrimination 5.  Avoidable pain and suffering The Cancer Divide: An Equity Imperative Facets
  20. 20. Adults Leukaemia All cancers Source: Knaul, Arreola, Mendez. estimates based on IARC, Globocan, 2010. Children LOW INCOME HIGH INCOME Survival inequalitygap LOW INCOME HIGH INCOME 100% Facet 3: The Opportunity to Survive Should Not, but Is Defined by Income In Canada, almost 90% of children with leukemia survive. In the poorest countries only 10%.
  21. 21. Cancer – especially in women and children - adds a layer of discrimination onto ethnicity, poverty, and gender. Survivorship care is non- existent.
  22. 22. Facet 5: The most insidious injustice is lack of access to pain control Non-methadone, Morphine Equivalent opioid consumption per death from HIV or cancer in pain: Poorest 10%: 54 mg per death Richest 10%: 97,400 mg per death
  23. 23. Challenge and disprove the myths about cancer
  24. 24. Investing In CCC: We Cannot Afford Not To "   Inaction reduces efficacy of health and social investments "   Total economic cost of cancer, 2010: 2-4% of global GDP "   Tobacco is a huge economic risk: 3.6% lower GDP Prevention and treatment offers potential world savings of $ US 130-940 billion 1/3-1/2 of cancer deaths are “avoidable”: 2.4-3.7 million deaths, of which 80% are in LIMCs ✓  
  25. 25. The costs to close the cancer divide may be less than many fear: "   All but 3 of 29 LMIC priority cancer chemo and hormonal agents are off-patent "   Cost of drug treatment: cervical cancer + HL + ALL(kids) in LMICs / year of incident cases: $US 280 m "   Pain medication is cheap "   Prices drop: HepB and HPV vaccines "   Delivery & financing innovations are underutilized & undeveloped: purchasing fragmented, procurement unstable Global  Paediatric  Financing  En#ty  
  26. 26. Global Paediatric Oncology Financing Entity •  Opportunity: –  90% in 25 poorest countries die; 90% in richest live –  Could save >60,000 lives –  Move PedOnc off the GLOBAL list of top killers •  Problem: small, geographically fragmented demand; no market for drugs; complex delivery (?); many countries without financing; other countries have $ and yet face drug shortages •  Delivery solution: innovative global delivery mechanisms (St. Judes/My Child Matters; Sick Kids; DFCI etc) •  Financing solution: global opportunity
  27. 27. Challenge and disprove the myths about cancer
  28. 28. Women and mothers in LMICs face many risks through the life cycle Women 15-59, annual deaths Diabetes 120,889 Breast cancer 166,577 Source: Estimates based on data from WHO: Global Health Observatory, 2008 and Murray et al Lancet 2011. Cervical cancer 142,744 Mortality in childbirth 342,900 - 35% in 30 years = 430, 210 deaths
  29. 29. The Diagonal Approach to Health System Strengthening "   Rather than focusing on disease-specific vertical programs or only on horizontal system constraints, harness synergies that provide opportunities to tackle disease-specific priorities while addressing systemic gaps. "   Optimize available resources so that the whole is more than the sum of the parts. "   Bridge the divide as patients suffer diseases over a lifetime, most of it chronic.
  30. 30. Why diagonal delivery? "  Shared risk factors "  Co-morbidity "  Life cycle approach "  Efficiency: Common need for strong health system platforms "  Knowledge sharing and inter-institutional collaboration "  Economic development "  Social justice
  31. 31. Diagonal Strategies: Positive Externalities "   Promoting prevention and healthy lifestyles: "   Reduce risk for cancer and many other diseases "   Reducing stigma around women’s cancers: "   Contributes to reducing gender discrimination "   Introducing cancer treatment for children "   Improves hygiene and reduces intra-hospital infections "   Promoting access to education for children w/ cancer "   Reduces poverty, contributes to social development "   Pain control and palliation "   Reducing barriers to access is essential for cancer as well as for for other diseases and for surgery.
  32. 32. Challenge and disprove the myths about cancer
  33. 33. Initial views on MDR-TB treatment, c. 1996-97 “MDR-TB is too expensive to treat in poor countries; it detracts attention and resources from treating drug-susceptible disease.” WHO 1997 Outcomes in MDR-TB patients in Lima, Peru receiving at least four months of therapy All patients initiated therapy between Aug 96 and Feb 99 Abandon therapy 2% Failed therapy 8% Died 8%
  34. 34. Champions Nobel Amartya Sen, Cancer survivor diagnosed in India 50 years ago Drew G. Faust President of Harvard University 22+ year BC survivor
  35. 35. Rural Rwanda: 0 oncologist Source: Paul Farmer., 2009 Burkitt´s lymphoma Embryonal Rhabdomyosarcoma
  36. 36. México: IT IS POSSIBLE
  37. 37. ‘Diagonalizing’ Financing: Integrate cancer care and control into national insurance and social security programs to express previously suppressed demand beginning with cancers of women and children: "  Mexico, Colombia, Dom Rep, Peru "  China, India, Thailand "  Rwanda, Ghana, South Africa
  38. 38. Universal Health Coverage in Mexico through Seguro Popular Horizontal  Coverage:     >  54.6  million  Beneficiaries   Ver9cal  Coverage       Diseases  and  Interven9ons:      Expanded  Benefit  Package      
  39. 39. Seguro Popular: Cancer and the Fund for Protection from Catastrophic Illness "   Accelerated, universal, vertical coverage by disease with an effective package of interventions "  2004: HIV/AIDS "  2005: cervical cancer "  2006: ALL in children "  2007: All pediatric cancers; Breast cancer "  2011: Testicular and Prostate cancer and NHL "  2012: Colorectal and ovarian cancer
  40. 40. Seguro Popular and cancer: Evidence of impact "  Access to medicines – an anecdote "  Since the incorporation of childhood cancers into the Seguro Popular "   Adherence to treatment: 70% to 95% "  Breast cancer adherence to treatment: "   2005: 200/600 "   2010: 10/900
  41. 41. % diagnosed in Stage 4 by state • # 2 killer of women 30-54 • Only 5-10% of cases in Mexico are detected in Stage 1 or in situ • Poor municipalites: 50% Stage 4; 5x rich Delivery failure: Breast Cancer Juanita Poor/Marginalized  
  42. 42. Effective financial coverage: breast cancer in Mexico –  Primary prevention –  Secondary prevention (early detection) –  Diagnosis –  Treatment –  Survivorship care –  Palliative care Large and exemplary investment in treatment for women and the health system, yet a low survival rate. By applying a diagonal approach, this can and is being remedied.
  43. 43. Harness platforms by integrating breast and cervical cancer prevention, screening and survivorship care into MCH, SRH, HIV/AIDS, social welfare and anti-poverty programs. Example: •  Mexico: integration of breast and cervical cancer awareness and screening into the national anti-poverty program Oportunidades Solution: ‘Diagonalizing’ Delivery
  44. 44. Including breast cancer awareness for early detection in Oportunidades •  “Guía de orientación y capacitación a titulares beneficiarios del programa Oportunidades” includes information on breast cancer as of 2009/10 •  1.5 million copies to promoters •  Reaches 5.8 million families = more than 90% of poor households
  45. 45. Solution: ‘Diagonalizing’ Delivery Results: 000´s promoters, nurses, doctors Harnessing the primary level of care
  46. 46. Lesson 1: Duality of advocacy and evidence •  Evidence-Based Passion & Passion inspired Evidence •  Advocacy without evidence is likely to be misguided and will tend towards error •  The mission of evidence is weakened when neither inspired by nor applied to the needs of patients and people •  Personal experience has spawned movements –  Fitzhugh Mullan: Seasons of Survival catalyzed the survivorship movement & area of research •  Methods for merging personal experience and evidence have not been formally developed – never been rigorously studied –  HGEI/HSPH/HMS/HGAS Experience-Evidence Seminar Fall- 2014
  47. 47. Lesson 2: Diagonal Approach to Evidence- based, Passionate (Patient) Advocacy •  Rabbi Hillel: “If I am not for myself, who will be for me? If I am only for myself, what/who am I? If not now, when?” •  Advocating only for ourselves or our own disease, particular disease limits potential for impact (and is perhaps unethical) •  Huge responsibility for cancer, and especially breast cancer advocates •  The art of patient advocacy is going ‘diagonal’ –  Common demands across diseases – i.e. pain control –  Strengthen health and social systems –  Collaboration and cooperation strengthen your message •  ‘Neglected and emerging’ areas for advocacy: –  where patients do not live long enough to advocate for themselves –  Survivorship challenges – long life with disease or symptoms– i.e. mental health –  Mental health - …and the NCD movement
  48. 48. Lesson 3: Local and Global are inseparable: Where are the opportunities? •  Address disparities: not months but whole lifetimes to be gained •  Focus on prevention but do not stop there! –  No prevent/treat dichotomization •  Harness global and national health system platforms •  Innovate in implementation, delivery and financing –  Redefine and reformulate health systems to manage chronicity –  Evaluate, replicate and scale up –  Leapfrog •  Recognize disadvantage groups as part of a global solution
  49. 49. Expanding access to cancer care and control in LMICs: Should, Could, and Can be done