Improving Palliative Care at a Global Level Kathleen M. Foley, MD Patient Advocacy Meeting Budapest June 29-30,2009

2002 WHO Definition of Palliative Care "Palliative care is an approach which improves quality of life of patients and their families facing life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual"

Palliative Care as a Public Health Issue affects all people affects all people need for better information on end- of-life care need for better information on end- of-life care potential to prevent suffering potential to prevent suffering potential to prevent disease potential to prevent disease

Palliative Care as a Prevention Model prevents needless suffering prevents needless suffering provides peer education provides peer education provides patient centered care provides patient centered care incorporates self-management programs incorporates self-management programs

The continuum of palliative care Diagnosis Death Therapies to modify disease (curative, restorative intent) Actively Dying Bereavement Care Life Closure Therapies to relieve suffering, improve quality of life 6m

Education Implementation Drug Availability WHO Public Health Model PolicyPolicy ContextContext ContextContext OutcomesOutcomes OutcomesOutcomes

Education Implementation Drug Availabilit y WHO Public Health Model PolicyPolicy ContextContext ContextContext OutcomesOutcomes OutcomesOutcomes

Education Implementation Drug Availability WHO Public Health Model PolicyPolicy ContextContext ContextContext OutcomesOutcomes OutcomesOutcomes

Consumption of Morphine in Europe mg/capita, 2001 Source: International Narcotics Control Board; United Nations Demographic Yearbook By: Pain & Policy Studies Group, University of Wisconsin/WHO Collaborating Center, 2004 Mg/capita Ukraine 1.3 mg/capita Global mean 5.4 mg/capita

Sources: International Narcotics Control Board; United Nations population data By: Pain & Policy Studies Group, University of Wisconsin/WHO Collaborating Center, Global Consumption of Morphine COUNTRYMg/capita Albania Armenia Georgia Hungary Moldova Romania Serbia Ukraine Hungary Moldova AlbaniaRomania Serbia Armenia Ukraine Georgia

Sources: International Narcotics Control Board; United Nations population data By: Pain & Policy Studies Group, University of Wisconsin/WHO Collaborating Center, 2008 EURO Consumption of Morphine, 2006 COUNTRYMg/capita Albania Armenia Georgia Hungary Moldova Romania Serbia Ukraine Georgia Hungary Ukraine Moldova Albania Romania Serbia Armenia

World Health Assembly Cancer Prevention and Control May 2005 Urges member states to ensure the medical availability of opioid analgesics Requests the WHO Director General (1) to explore mechanisms for funding cancer prevention, control and palliative-care, especially in developing countries. (2) to examine with the International Narcotics Control Board how to facilitate the adequate treatment of pain using opioid analgesics.

INCB Annual Report for 2004 March 2005 “ In view of the continued inadequate global consumption of opiates for the treatment of pain, the Board reiterates that it would welcome a further increase in global demand for opiates. The Board encourages Governments to take steps to increase the medical use of opiates in their countries in order to meet their real needs for the treatment of pain.”

WHO Access to Essential Medicines Program Created an office for controlled substances as essential medicines Created an office for controlled substances as essential medicines Appointed Willem Scholten as program director Appointed Willem Scholten as program director To develop a strategic plan with NGO partnerships To develop a strategic plan with NGO partnerships

WHO Access to Essential Medicines Program To focus on low and medium resource countries To focus on low and medium resource countries To support pain and palliative care as a human right To support pain and palliative care as a human right

Publications on International Palliative Care Issues  Journal of Pain and Symptom Management Volume 33,Number 5 May, 2007: Advancing Palliative Care: The Public Health Perspective  Health Economics and Palliative care; What We Know and What We Need to Know. In press, 2008

World Cancer Declaration 2008 Outlines the critical steps needed to build the basis for sustainable delivery of effective cancer prevention, early detection, treatment and palliative care worldwide World Cancer Summit, Geneva,2008

World Cancer Declaration 2008 Based on: Based on: Article 25 of the Universal Declaration of Human Rights declares that “everyone has the right to a standard of living, adequate for health and well being for himself and his family, including medical care.”

7. many more cancer patients in pain will have access to effective pain control measures 2020 Goals

7. the number of cancer patients with access to appropriate treatment, rehabilitation and palliative care in adequately equipped treatment facilities 9. the number of cancer patients in pain worldwide that have access to effective pain control Intermediate Targets

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Strategies for the advancement of Palliative Care as a Human Right Submission to the committee ICESCR Submission to the committee ICESCR Submission to the office of the Special Rapporteur to the UN Human Rights Commission on the right to health Submission to the office of the Special Rapporteur to the UN Human Rights Commission on the right to health Promotion of an International Convention on Pain Promotion of an International Convention on Pain Encourage human rights organizations to become involved in advocacy for palliative care Encourage human rights organizations to become involved in advocacy for palliative care Use current declarations (Cape Town, Korea, Budapest) as advocacy tools with your government Use current declarations (Cape Town, Korea, Budapest) as advocacy tools with your government

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In this 47-page report Human Rights Watch said that countries could significantly improve access to pain medications by addressing the causes of their poor availability. These often include the failure to put in place functioning supply and distribution systems; absence of government policies to ensure their availability; insufficient instruction for healthcare workers; excessively strict drug-control regulations; and fear of legal sanctions among healthcare workers. Access to Pain Treatment as a Human Right “Please, do not make us suffer anymore…….”

Promoting Hospice & Palliative Care Worldwide

IAHPC 2006 Developed essential drug list for palliative care Developed essential drug list for palliative care Drafted WHO monograph on palliative care Drafted WHO monograph on palliative care Sponsors international faculty scholars award Sponsors international faculty scholars award Sponsored 2006 Venice Declaration o the need for research in palliative care. Sponsored 2006 Venice Declaration o the need for research in palliative care.

Joint Declaration and Statement of Commitment: Palliative Care and Pain Treatment as Human Rights Project coordinated by the IAHPC and WPCA sign on at Project coordinated by the IAHPC and WPCA sign on at

IAHPC List of Essential Medicines 34 medications are listed 34 medications are listed 14 medications currently on the existing WHO Essential List 14 medications currently on the existing WHO Essential List

IAHPC List of Essential Medicines

Global Access to Pain Relief Initiative Supported by International Union Against Cancer (UICC) Supported by International Union Against Cancer (UICC) -global advocacy initiative -raise awareness for policy change -focus on cancer patients

Dr. Simbo Daisy Amanor-Boadu Nigeria Prof. Snežana Bošnjak Serbia Prof. Rosa Buitrago Republic of Panama Mrs. Nguyen Thi Phuong Cham Vietnam Dr. Henry Ddungu Uganda Dr. Jorge Eisenchlas Argentina Dr. Marta Ximena León Colombia Mr. Gabriel Madiye Sierra Leone 2006 International Pain Policy Fellowship Pain & Policy Studies Group University of Wisconsin October, 2006 Madison, Wisconsin Supported by the Open Society Institute

To provide research-based information on palliative care in the global context To disseminate this information through the Observatory website and through other means To undertake primary research studies to generate such information To support academic work in resource poor regions To work in partnership with key organisations and individuals IOELC Aims

Monitoring—Opioid Consumption Grants Funded

The Romania Project WHO workshop in Budapest (2002) WHO workshop in Budapest (2002) (Bulgaria, Croatia, Hungary, Lithuania, Poland, Romania) Prescribing severely restricted in Romania Prescribing severely restricted in Romania –- Complicated forms and authorizations – Dose and time limits; no flexibility – For incurable cancer, not for HIV/AIDS Many patients die before obtaining morphine Many patients die before obtaining morphine 35 year-old anti-narcotics law and regs 35 year-old anti-narcotics law and regs Ministry of Health appointed a Commission Ministry of Health appointed a Commission New statute sent to Parliament July 2005 New statute sent to Parliament July 2005 New regulations to be finalized in 2006 New regulations to be finalized in 2006

WHO Workshop, Budapest 2002

Change is possible if we work together

Progress in Europe 1.France: 7 days 28 days 2. Italy: 8 days1 month; Rx simpl. 3. Germany: 1 day no limit 4. Poland: 100 mg4.0 grams 5. Romania:3 days30 days

Mongolia Pain Relief & Palliative Care Initiative Mongolian Ministry of Health Mongolian Palliative Care Society World Health Organization

Education : 400 doctors, 600 nurses sensitized (MPCS – Odontuya, OSI ) 2004: Established regional training center, regular journal (MPCS – OSI ) 2004: Palliative care recognized as medical discipline (3 months CAQ ) 2005: State University of Ulaanbaater adds palliative care to medical curriculum

Policy 2002: Leadership conference - workgroups 2004: Follow-up conference – policies, Rx rules change – Palliative care included in national health plan 2005: Standards for palliative care : National Health PolicyDevelop guidelines, train professionals, Establish MD Teams all aimags, districts 2006+: Develop National Cancer Control Policy

Prescribing Opioids 2002: Only oncologists Rx 10 tabs or amps per Rx per 3 days 10 tabs or amps per Rx per 3 days 2005: Any doctor can Rx, Amount needed for 7 days Amount needed for 7 days

Implementation 2000: NCC – 10 bed PCU (OSI ) 2002: NCC – PCU  to 16 beds ( MOH ) 2002-present: 4 hospices in UB 2006: 20 General Oncologist start community palliative care network around aimag and district hospitals ( each will have 2-5 PC beds )

The Ocean Road Cancer Institute Palliative Care Centre, Tanzania

WHO Community Health Approach to Palliative Care for HIV and Cancer Patients in Africa Model Initiative in Providing Palliative Care Uganda Ministry of Health included palliative care in its National Health Sector Strategic Plan Uganda developed and funded an essential drug program and changed restrictive laws to allow oral morphine in home-based settings

Policy Initiative Examples Hungarian Experience Hungarian Experience –IPCI sponsored Policy Conference resulted in Hungarian Health Insurance Fund sponsoring a pilot program to develop six model palliative care programs –Palliative care has been included in the National Cancer Control Program –The MOH has committed to develop palliative care services in all regions in the country by 2010

Not-for-profit, non-governmental organization Not-for-profit, non-governmental organization Founded 1998 by International Union against Cancer (UICC) & Institut Pasteur, Brussels Founded 1998 by International Union against Cancer (UICC) & Institut Pasteur, Brussels National Cancer Institute (NCI) assists by providing financial, technical & intellectual support National Cancer Institute (NCI) assists by providing financial, technical & intellectual support Located at Institut Pasteur, Brussels Located at Institut Pasteur, Brussels Branches in USA, France, Egypt & Nepal Branches in USA, France, Egypt & Nepal Offices in UK, Brazil, India & Tanzania Offices in UK, Brazil, India & Tanzania

ADVANCING PALLIATIVE CARE INTERNATIONALLY World Health Organization Geneva - WHO Cancer Unit Europe – WHO Aging Program UN AIDS Global Fund for TB, Malaria & AIDS PEPFAR European Union European Parliament Council of Europe

ADVANCING PALLIATIVE CARE INTERNATIONALLY (NGO ’s) International Association of Hospice and Palliative Care Help the Hospices OSI’s International Palliative Care Initiative National Hospice and Palliative Care Organization

ADVANCING PALLIATIVE CARE INTERNATIONALLY (NGO’S ) International Psycho-oncology Society (IPOS) European Federation of IASP Chapters (EFIC) European Society of Medical Oncology (ESMO)