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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:	
  
From anecdote …
… to evidence
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.
In the children’s cancer ward of the Hospital Pediátrico de Sinaloa
promoting Sigamos Aprendiendo en el Hospital. Culiacán, late 2005.
January,	
  2008	
  June,	
  2007	
  
Battling sepsis in the
Médica Sur Hospital.
Mexico City. July 2008
Launching a program
at the Mexican
Health Foundation
the day I got sepsis.
July 2008.
Juanita:
Advanced metastatic breast
cancer is the result of a series
of missed opportunities
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.
With Julie Gralow visiting a terminal patient in the Hospital Regional de Ciudad Guzmán.
Jalisco, México. August 2011.
From anecdote …
… to evidence
GTF.CCC
Members	
  
= global health + cancer care
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
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:
"  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.
#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	
  
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.
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
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%.
Cancer – especially in
women and children - adds a
layer of discrimination onto
ethnicity, poverty, and
gender.
Survivorship
care is non-
existent.
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
Challenge and disprove the
myths about cancer
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
✓	
  
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	
  
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
Challenge and disprove the
myths about cancer
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
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.
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
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.
Challenge and disprove the
myths about cancer
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%
Champions
Nobel Amartya Sen,
Cancer survivor diagnosed in India
50 years ago
Drew G. Faust
President of Harvard University
22+ year BC survivor
Rural Rwanda: 0 oncologist
Source: Paul Farmer., 2009
Burkitt´s
lymphoma
Embryonal
Rhabdomyosarcoma
México: IT IS POSSIBLE
‘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
Universal Health Coverage in Mexico
through Seguro Popular
Horizontal	
  Coverage:	
  	
  
>	
  54.6	
  million	
  Beneficiaries	
  
Ver9cal	
  Coverage	
  	
  	
  
Diseases	
  and	
  Interven9ons:	
  	
  
	
  Expanded	
  Benefit	
  Package	
  	
  	
  
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
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
% 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	
  
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.
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
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
Solution:
‘Diagonalizing’ Delivery
Results: 000´s promoters, nurses, doctors
Harnessing the primary level of care
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
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
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
Expanding access to cancer care and control in
LMICs: Should, Could, and Can be done

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Global Advocacy: From Anecdote to Evidence

  • 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. From anecdote … … to evidence
  • 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. In the children’s cancer ward of the Hospital Pediátrico de Sinaloa promoting Sigamos Aprendiendo en el Hospital. Culiacán, late 2005.
  • 6. Battling sepsis in the Médica Sur Hospital. Mexico City. July 2008
  • 7.
  • 8.
  • 9.
  • 10.
  • 11. Launching a program at the Mexican Health Foundation the day I got sepsis. July 2008.
  • 12. Juanita: Advanced metastatic breast cancer is the result of a series of missed opportunities
  • 13. 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.
  • 14. With Julie Gralow visiting a terminal patient in the Hospital Regional de Ciudad Guzmán. Jalisco, México. August 2011.
  • 15.
  • 16. From anecdote … … to evidence
  • 18. = global health + cancer care
  • 19.
  • 20. 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
  • 21. 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:
  • 22. "  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.
  • 23. #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  
  • 24. 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.
  • 25. 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
  • 26. 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%.
  • 27. Cancer – especially in women and children - adds a layer of discrimination onto ethnicity, poverty, and gender. Survivorship care is non- existent.
  • 28. 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
  • 29. Challenge and disprove the myths about cancer
  • 30. 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 ✓  
  • 31. 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  
  • 32. 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
  • 33. Challenge and disprove the myths about cancer
  • 34. 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
  • 35. 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.
  • 36. 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
  • 37. 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.
  • 38. Challenge and disprove the myths about cancer
  • 39. 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%
  • 40. Champions Nobel Amartya Sen, Cancer survivor diagnosed in India 50 years ago Drew G. Faust President of Harvard University 22+ year BC survivor
  • 41. Rural Rwanda: 0 oncologist Source: Paul Farmer., 2009 Burkitt´s lymphoma Embryonal Rhabdomyosarcoma
  • 42. México: IT IS POSSIBLE
  • 43. ‘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
  • 44. Universal Health Coverage in Mexico through Seguro Popular Horizontal  Coverage:     >  54.6  million  Beneficiaries   Ver9cal  Coverage       Diseases  and  Interven9ons:      Expanded  Benefit  Package      
  • 45. 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
  • 46. 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
  • 47. % 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  
  • 48. 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.
  • 49. 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
  • 50. 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
  • 51. Solution: ‘Diagonalizing’ Delivery Results: 000´s promoters, nurses, doctors Harnessing the primary level of care
  • 52. 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
  • 53. 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
  • 54. 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
  • 55. Expanding access to cancer care and control in LMICs: Should, Could, and Can be done