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Alleviating the access abyss in palliative care and pain relief

Key findings and recommendations of


The Lancet Commission report
Dr. Felicia Marie Knaul (University of Miami), on behalf of the Lancet Study Group
Global Oncology Research Dialogue
May 1, 2018

http://www.thelancet.com/commissions/palliative-care
The night of my high school graduation dance visiting my
father, Sigmund Knaul, at Mount Sinai Hospital, Toronto a
few weeks before his death from cancer. May 1984.
Hospital Regional de Ciudad Guzmán, Zapotlán el Grande, Jalisco, México
Overview of Lancet Commission and Report

Health Systems and


Global Health
+
Palliative Care Specialists

• Chair, co-chair
• 33 commissioners
• 61 co-authors from
over 25 countries

Led by the
University of Miami in
collaboration with
Harvard University
5 Key Messages
1. Alleviation of the burden of serious health-related suffering from life-
threatening or life-limiting conditions and at end-of-life is a global health and
equity imperative.

2. Universal access to an affordable Essential Package of palliative care can


alleviate much of the burden of SHS.

3. LMICs can improve the welfare of poor people at modest cost by publicly
financing the Essential Package of palliative care and through full integration
into Universal Health Coverage.

4. International and balanced collective action is essential to achieving universal


coverage of palliative care and pain relief by facilitating effective access to
essential medicines, while implementing measures to prevent non-medical use.

5. Better evidence and priority setting tools must be generated to adequately


measure the global need for palliative care, implement policies and programs,
and monitor progress towards alleviating the burden of pain and other SHS
“A Sea of Suffering”
Dr. Richard Horton, Editor-in-chief of The Lancet
April 14, 2018
Launch Symposium
UM, April 5-6
“The Lancet Commission called on the entire health community, indeed the whole of
society, to take pain and suffering more seriously—and to take collective action to
remedy the access abyss, without question the most disfiguring inequity in health
care today. It’s hard to understand how the medical community has missed what Eric
Krakauer called this “sea of suffering”. But miss it we have, so obsessed have we
been with prolonging survival at almost any cost. Our metrics to monitor health
must bear some responsibility. Life expectancy, years of life lost, years of life lived
with disability, and disability-adjusted life-years (DALYs) have come to dominate the
debate about progress in health. These are powerful measures, to be sure. But the
great innovation of the Lancet Commission was to devise a new metric— severe
health-related suffering—to uncover the epidemic of suffering afflicting
communities worldwide. This discovery—and it is a discovery in the truest scientific
meaning of the term—is equal to the identification of mental health as a global health
priority by measuring DALYs. The story of health in the 21st century has been
entirely rewritten...
Medicine can never be the same again.”
Outline
1. Global Need: Serious Health-
related Suffering
2. Unmet need: level and equity
3. Intervention: an essential package
4. Strengthening the global and national
health systems
5. Next steps
Global burden of serious health-related suffering (SHS) - 2015
Health conditions (20): people (decedent and non-decedent) who experienced SHS

25.6 million
35.5 million
61.1 million

Symptoms (15): physical (11) and psychological (4); days with SHS

11.9 billion 9.3 billion


21.2 billion
Measuring SHS: symptoms of dementia
Physical
Symptoms

Dementia
MS pain
Mild pain

Fatigue Dyspnea

Weakness

Health care Confusion/delirium

nausea Constipation needs:


Dementia
diarrhea Dry mouth
Depression

Itchiness Wounds
Anxiety

Bleeding Psychological
Symptoms
Measuring SHS:
Symptom: Pain,
by health condition HIV

MSD

Pain

Malignant neoplasm
(except leukemia)

Injury
Cerebrovascular
diseases
Global burden of serious health-related
suffering (SHS) in 2015
25.5 millon deaths
• 45% of the 56.2 millon
deaths worldwide

And…
• at least 35.5 million
5.3 million children with SHS
people experienced
• 99% are in LMICs
SHS (non-decedents) • 88% of deaths: avoidable

61.1 million people worldwide suffered


> 6 billion days of suffering (up to 21 billion days)
80% in LMICs
Avoidable Mortality and SHS: LMICs
• Low income countries: 81%
• Children in LMICs:
• Lower-middle-income countries: 69%
88%
• Upper-middle-income countries: 46%

• Infectious diseases and health


conditions associated with poverty
have the highest percentage of PC
decedents that are avoidable
– Tuberculosis, HIV, inflammatory
diseases of CNS, and
malnutrition: >95%
Cancer related burden of SHS (2015)
≃ 15 million people per year globally
• Global
• 7.8 million decedents in need of PC By country income:
• 7.1 million patients in need of PC • 8% low
• 2.1 billion days
•16% lower middle
• LMICs • 30% upper middle
• 5.5 million decedents in need of PC • 42% high
• 90% of the total cancer deaths
• 5 million patients
• ~1.5 billion days

Avoidable cancer mortality associated


with SHS in LMICs: 56%
Mexico: The burden of SHS (2015)
≃ 470,000 people per year

• 230,000 deaths
• 37% of the total
• 240,000 patients
• 150 million days
• Cancer, HIV/AIDS, injuries,
dementia, liver and lung
diseases
Outline
1. Global Need: Serious Health-related
Suffering
2.Unmet need: level and
equity
3. Intervention: an essential package
4. Strengthening the global and national
health systems
5. Next steps
“In agonizing, crippling pain from lung cancer, Mr S came to the
palliative care service in Calicut, Kerala, from an adjoining district a
couple of hours away by bus. His body language revealed the depth of
the suffering.

We put Mr S on morphine, among other things. A couple of hours later,


he surveyed himself with disbelief. He had neither hoped nor conceived
of the possibility that this kind of relief was possible.

Mr S returned the next month. Yet, common tragedy befell patient and
caregivers in the form of a stock-out of morphine.

Mr S told us with outward calm, “I shall come again next Wednesday. I


will bring a piece of rope with me. If the tablets are still not here, I am
going to hang myself from that tree”. He pointed to the window. I
believed he meant what he said.

Stock-outs are no longer a problem for palliative care in Kerala, but


throughout most of the rest of India, and indeed our world, we find near
total lack of access to morphine to alleviate pain and suffering.
Dr M R Rajagopal, personal testimony
Inequity of access: distributed opioid
morphine-equivalent (DOME)

• The 50%
poorest: <1%

• The 10%
richest:
almost 90%
Distributed opioid morphine-equivalent
mg/patient & (% of SHS palliative care need)

Russia:
W. Europe: 124 mg (8%)
Canada: 18,316 mg (870%)
68,194 mg (3090%)
China:
314 mg (16%)
USA:
Vietnam
55,704 mg (3150%) 125 mg (9%)
Haiti:
5.3 mg (0.8%) India:
Mexico: Nigeria: 43 mg (4%) Australia:
562 mg (36%) 0.8 mg (0.2%) 40,636 mg
(1890%)
Bolivia: Uganda:
53 mg (11%)
74 mg (6%)
Argentina:
2,374 mg (115%)
Source: Author calculations using INCB (2010-13) and GHE 2015 (www.incb.org,
http://www.who.int/healthinfo/global_burden_disease/en/) . See Data Appendix for methods.
Total medical and palliative care unmet need
for opioid analgesics (in DOME)
Benchmark: Western Europe High-Income
Palliative Care need Projected total need Western
Europe High
Income
Countries:
Austria
Belgium
Denmark
Finland
France
Germany
Greece
Iceland
Ireland
Total need: 82 Tons Italy
(Unmet need = 49 Tons) Luxembourg
Malta
Netherlands
Norway
Low Portugal
Income Spain
Lower middle Sweden
regions Switzerland
Upper middle Total need: 581 metric tonnes United Kingdom
High (Unmet need: 548 metric tonnes)

Source: Knaul, Farmer, Krakauer et al, 2017. http://www.thelancet.com/commissions/palliative-care.


Opioid Epidemic in US: A unique situation
• Monitor the supply and marketing of Deaths from opioids
opioids overdose, by type of opioid,
in USA 2000-15
• Prevent direct marketing of opioid
medications to health care providers by
pharmaceutical companies
• Ensure that all health personnel receive
mandatory, basic training for safe
management of opioid analgesics
• Ensure that indications for use and
prescription of opioid medications
follow evidence-based practice

A balanced approach is essential –


adequate attention to medical needs of all patients, as well
as management of risk of non-medical use
Outline
1. Global Need: Serious Health-related
Suffering
2. Unmet need: level and equity
3.Intervention: an essential
package
4. Strengthening the global and national
health systems
5. Next steps
Intervention: Essential Package
Medicine Medical Equipment
Amitriptyline Pressure Reducing Mattress
Bisacodyl (Senna) Nasogastric drainage or feeding tube
Dexamethasone Urinary catheters
Diazepam Opioid lock box
Diphenhydramine (chlorpheniramine, cyclizine, or
Flashlight with rechargeable battery
dimenhydrinate, oral and injectable)
Adult diapers/ Cotton and Plastic
Fluconazole
Oxygen
Fluoxetine or other SSRI (sertraline and citalopram)
Furosamide
Hyoscine Butylbromide
Haloperidol
Ibuprofen (naproxen, diclofenac, or meloxicam)
Human Resources
Lactulose (sorbitol or polyethylene glycol) Doctors (Specialty and General)
Loperamide Nurses (Specialty and General)
Metoclopramide Social Workers and Counsellors
Metronidazole
Psychiatrist, psychologist or counsellor
Morphine
Physical Therapist
Naloxone Parenteral
Pharmacist
Omeprazole oral
Community Health Workers
Ondasetron
Clinical Support Staff
Paracetamol oral
Non Clinical Support Staff
Petroleum jelly

Aligned with Sustainable Development Goals (SDGs):


Should be made universally accessible by 2030
Essential Package: cost per person with SHS
Rwanda, Vietnam and Mexico by medicine prices
(US$ current value, 2015)
Rwanda Vietnam Mexico

Reported Intl Prices Reported Intl Prices Reported Intl Prices


Price Lowest Highest Price Lowest Highest Price Lowest Highest

Medicines 52 18 78 27 23 96 122 28 119

Morphine (oral or injectable) 20 8 50 14 12 76 90 14 84

Equipment 31 5 31

Palliative care team (HR) 121 78 584

Total 219 182 248 119 115 194 796 694 793

% public health expenditure4 8.8 7.3 9.9 1.0 1.0 1.7 1.0 0.8 1.0

For LIMCS: =~3% of the


DCP3 Essential UHC package
Annual estimated cost of closing the access
abyss to meet the global palliative care need
for off-patent morphine (medicine-only)

• At current prices:
$US600 million
• At best
international
prices:
$US145 millon
For all children with SHS in low income countries:
$US 1,034,000
Outline
1. Global Need: Serious Health-related Suffering
2. Unmet need: level and equity
3. Intervention: an essential package
4.Strengthening the global and
national health systems
5. Next steps
The Diagonal Approach to
Health System Strengthening
Rather than focusing on either disease-specific vertical or
horizontal-systemic programs, harness synergies that provide
opportunities to tackle disease-specific priorities while
addressing systemic gaps and optimize available resources
Diagonal strategies add value:
Drive systemic change
Compound, which means increase effectiveness at a given cost
Bridge disease divides using a life cycle response
Avoid the false dilemma of disease silos

Pain control and palliative care:


reducing barriers to access for cancer care
improves access for all, and strengthens surgical platforms
An effective UHC response to chronic illness
must integrate interventions along the
Continuum of disease:
1. Primary prevention ….As well through each
2. Early detection
3. Diagnosis Health system function
4. Treatment 1. Stewardship
5. Survivorship
6. Palliative care
2. Financing
3. Delivery
4. Resource generation
Strengthening Health Systems, by Function to Expand Access PC & PR
Stewardship Financing
Priority setting • Explicitly include palliative care interventions in national insurance and social security
• Implement public education and awareness-building health-care packages
campaigns around palliative care and pain relief • Guarantee public or publicly mandated funding through sufficient and specific
• Incorporate palliative care and pain relief into the budgetary allocations starting with the Essential Package
national health agenda • Develop pooled purchasing schemes to ensure affordable, competitive prices for
palliative care inputs and Interventions
Planning
• Develop comprehensive palliative care and pain relief Delivery
guidelines, programmes, and plans
• Integrate palliative care into disease-specific national • Integrate palliative care and pain relief at all levels of care and in disease-specific
guidelines, programmes, and plans programmes
• Include palliative care and pain relief essential • Design guidelines to provide effective and responsive palliative care and pain relief
medicines in national essential lists services
• Integrate pain relief into platforms of care, especially surgery
Regulation • Establish efficient referral mechanisms
• Establish effective legal and regulatory guidelines for the • Implement quality-improvement measures in palliative-care initiatives
safe management of opioid analgesics and other • Develop and implement secure opioid supply chain and ensure adequate prescription
controlled medicines that do not generate unduly practices
restrictive barriers for patients
• Design integrated guidelines for provision of palliative Resource Generation
care and pain relief that encompass all service providers
Human resources
Monitoring and evaluation of performance • Establish palliative care as a recognised medical and nursing specialty
• Monitor and evaluate palliative care and pain relief • Make general palliative care and pain relief competencies a mandatory component of
interventions and programmes using an explicit outcomes all medicine, nursing, psychology, social work, and pharmacy undergraduate curricula
scale, measuring coverage as well as effect • Require that all health and other professionals involved in caring for patients with
• Promote civil society involvement in performance serious, complex, or life-threatening health conditions receive basic training in palliative
Assessment care and pain relief

Intersectoral advocacy Information and Research


• Engage all relevant actors in the promotion and
• Incorporate palliative care and pain relief access, quality, and financing indicators into
implementation of palliative care interventions and
health information systems
programmes through ministries of health
• Ensure that government-funded research programmes include palliative care
Country Case Studies
Regions Health Systems & UHC / Models & Innovations
Kenya South Africa
Africa Malawi Uganda
Rwanda
Mongolia
East Asia
Vietnam
Albania
Eastern Europe
Romania
Chile El Salvador
Latin America and Colombia Jamaica
Caribbean Costa Rica Mexico
Middle East Lebanon
North America United States
Kerala, India
South Asia India
Nepal
Mexico: Advocacy played a key role in
evoking policy and legislative breakthroughs
Advocacy by a large 1. Law was enacted by the
Ministry of Health
group of local NGOs
2. Palliative care and pain
in collaboration with
relief services added to
a Supreme Court the Seguro Popular
Judge, a Minister of essential package
Health, and Human 3. Electronic prescribing
Rights Watch drove replaced paper for
policy change controlled medicines

Next steps: PC&PR Shadow Observatory,


National PC&PR Association
Outline
1. Global Need: Serious Health-related
Suffering
2. Unmet need: level and equity
3. Intervention: an essential package
4. Strengthening the global and national
health systems
5. Next steps
The Lancet Call-to-Action:
“... Measures of suffering have been absent, and
so the need for palliative care and pain relief
services has been easy to miss.
That excuse no longer holds.…
The Commission has uncovered an appalling
oversight in global health.
It is time for that oversight to be remedied.”

Richard Horton, The Lancet, 2017


Implementation Working Group
Anchored by the International Association for
Hospice and Palliative Care and in collaboration
with global, regional and national regional palliative
care networks and associations

CARIPALCA
Four streams of work
following report release:
1. Research: ex. Suffering-intensity-
adjusted life years (SALYs)
2. Global collective action: ex. INCB
3. Advocacy and awareness
4. In-country implementation
Advocacy Tool-kit and Background Resources

– Lancet Commission Publication:


– thelancet.com/commissions/palliative-care
• Executive Summary and Full report
• Commentaries
• Podcast

– Advocacy Toolkit:
www.miami.edu/lancet --> background resources
• Fact sheets
• Country data sheet
• Video presentation
• Wall map
• Data Appendix
Miami DECLARAcTION:
Outcome of Launch, April 2018
Forthcoming, The Lancet
• Statement of action by critical mass
gathered at symposium to evoke change
– Commitments by advocates and researchers
– Calls to task diverse stakeholders

• Positions palliative care and pain relief as


key to volume-to-value transition
• Guided by evidence and recommendations
in The Lancet Commission report
Alleviating the access abyss in palliative care and pain relief
Key findings and recommendations of
The Lancet Commission report
Dr. Felicia Marie Knaul (University of Miami), on behalf of the Lancet Study Group
Global Oncology Research Dialogue
May 1, 2018

http://www.thelancet.com/commissions/palliative-care

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