Global Advocacy: From Anecdote to Evidence:

Patient Advocacy Scholar Seminar Harvard Faculty Club, Cambridge April 26th, 2013

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 Tmatelo a Pecho A:C. Mxico Mexican Health Foundation

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 childrens cancer ward of the Hospital Peditrico de Sinaloa promoting Sigamos Aprendiendo en el Hospital. Culiacn, late 2005.

January, 2008 June, 2007

Battling sepsis in the Mdica 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 Guzmn. Jalisco, Mxico. August 2011.

From anecdote

to evidence

GTF.CCC
Members

Global Task Force on Expanded Access to Cancer Care and Control in Developing Countries

= global health + cancer care

Closing the Cancer Divide:

A BLUEPRINT TO EXPAND ACCESS IN LMICs

Applies a diagonal approach to avoid the false dilemmas between disease silos -CD/NCD- that continue to plague global health

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

Expanding access to cancer care and control in low and middle income countries:

M1. Unnecessary
M2. Unaffordable M3. Impossible M4: Inappropriate

Should,
Could, and Can..

The Cancer Transition

Mirrors the epidemiological transition
LMICs increasingly face both infectionassociated cancers, and all other cancers.

Cancers increasingly only of the poor, are not the only cancers affecting the poor.

For children & adolescents 5-14 cancer is

#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.

The cancer transition in LMICs: breast and cervical cancer

LMICs account for >90% of cervical cancer deaths and >60% of breast cancer deaths. Both diseases are leading killers especially of young women.
% Change in # of deaths 1980-2010
53%

19%

20%

0%

LMICs

High income
-31%

Source: Knaul, Arreola, Mendez. estimates based on IHME, 2011.

The Cancer Divide: An Equity Imperative

Cancer is a disease of both rich and poor; yet it is increasingly the poor who suffer:
1. 2. 3. 4. 5. Exposure to risk factors Preventable cancers (infection) Treatable cancer death and disability Stigma and discrimination Avoidable pain and suffering

Facets

Facet 3: The Opportunity to Survive Should Not, but Is Defined by Income

100%

Children

Adults Survival inequality gap

Leukaemia

All cancers LOW INCOME HIGH INCOME LOW INCOME HIGH INCOME

Source: Knaul, Arreola, Mendez. estimates based on IARC, Globocan, 2010.

In Canada, almost 90% of children with leukemia survive. In the poorest countries only 10%.

Facet 4: Stigma:

Cancer especially in women and children - adds a layer of discrimination onto ethnicity, poverty, and gender.

Survivorship care is nonexistent.

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

M1. Unnecessary NECESSARY M2. Unaffordable: .for the poor M3. Inappropriate: either/or Challenging cancer implies taking resources away from other diseases of the poor M4: Impossible

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

1/3-1/2 of cancer deaths are avoidable: 2.4-3.7 million deaths, of which 80% are in LIMCs
Prevention and treatment offers potential world savings of $ US 130-940 billion

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 Entity

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

M1. Unnecessary NECESSARY M2. Unaffordable: .for the poor M3. Inappropriate: either/or Challenging cancer implies taking resources away from other diseases of the poor M4: Impossible

Women and mothers in LMICs face many risks through the life cycle Women 15-59, annual deaths
- 35% in 30 years
Mortality in childbirth Breast cancer Cervical cancer Diabetes

342,900

166,577

142,744

120,889

= 430, 210 deaths

Source: Estimates based on data from WHO: Global Health Observatory, 2008 and Murray et al Lancet 2011.

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 womens 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

M1. Unnecessary M2. Unaffordable M3. Inappropriate M4: Impossible

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
Failed therapy Abandon 8%
therapy 2%
Died 8%

Cured 83%

All patients initiated therapy between Aug 96 and Feb 99

Champions
Drew G. Faust
President of Harvard University 22+ year BC survivor

Nobel Amartya Sen,

Cancer survivor diagnosed in India 50 years ago

Harvard, Breast Cancer in Developing Countries, Nov 4, `09

Rural Rwanda: 0 oncologist

Burkitts lymphoma

Embryonal Rhabdomyosarcoma

Source: Paul Farmer., 2009

Mxico: 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

Expanded Benefit Package

Vertical Coverage Diseases and Interventions:

Horizontal Coverage:

> 54.6 million Beneficiaries

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

Delivery failure: Breast Cancer

# 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
% diagnosed in Stage 4 by state

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.

Solution: Diagonalizing Delivery

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

Including breast cancer awareness for early detection in Oportunidades

Gua de orientacin y capacitacin 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

Harnessing the primary level of care

Results: 000s promoters, nurses, doctors

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 Evidencebased, 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

Be an optimist optimalist

Expanding access to cancer care and control in LMICs: Should, Could, and Can be done