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.

5. January,
2008
June,
2007

6. Battling sepsis in the
Médica Sur Hospital.
Mexico City. July 2008

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.

16. From anecdote …
… to evidence

17. GTF.CCC
Members

18. = global health + cancer care

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