IAHPC Advocacy Program
The content of this section is under the coordination of Dr. Katherine Pettus, PhD, the IAHPC Advocacy Officer. If you wish to suggest any additional resources to add to this page, please contact Dr. Pettus via our website.
What is Palliative Care Advocacy?
Advocacy Program
Through this program, the IAHPC, in collaboration with other UN approved non-governmental organisations, seeks to ensure that access to palliative care and to essential medicines for pain relief and palliative care are included in international policy documents and strategies, as components of the right to health. Ideally, national palliative care organisations can leverage these international documents, usually approved by members of their own governments, to improve palliative care delivery for their patients and secure public funding. IAHPC works on the drafting and implementation of resolutions, agreements and strategies with international agencies of the United Nations, including the World Health Organisation and with governments by invitation. We also train palliative care providers who are members of palliative care associations to do advocacy for specific needs in their countries and regions.
Frequently asked questions
- What is a palliative care policy advocacy? Structured communication between national, regional, and global palliative care associations (non-governmental organisations) and government representatives, at the local, national, regional, and international levels.
- Why does IAHPC do palliative care advocacy? To improve care for the patients and families cared for by our members. Our advocacy includes encouraging governments to improve access to internationally controlled essential medicines such as morphine by collaborating, upon request, to review and revise unduly restrictive laws and regulations, educate prescribers, and raise public awareness raising of the benefits of rational access to controlled medicines.
- Who can do palliative care advocacy? Members of a palliative care or other professional associations or institutions. IAHPC advocacy is done by individuals and teams in an institutional context that is framed by the United Nations system. National advocacy is done in the context of your own government.
- How can I do palliative care advocacy? It depends on the issue and on what level you want to work: local, regional, national, international, or a combination. Advocacy is done by individuals, but through institutions.
- Join your national, regional, and international palliative care organizations.
- Stay current by reading the IAHPC newsletter!
- Get to know your lawmakers and regulators). Invite them to visit your program and see your work firsthand.
- Participate in social media (create and join accounts on Twitter, Facebook, Linked in, and Youtube.) IAHPC has all those accounts. You can “follow” us and stay current. (we can help!)
- Ensure your association designates an advocacy focal point to engage in direct communication: letters, emails, etc. with lawmakers, and with regional and international palliative care organisations (we can help!)
- Get to know journalists and representatives of traditional media: learn to write press releases, editorials, and co-author journal articles (we can help)
- Participate in a delegation with your national, regional, or international association in meetings where public health issues are debated and policy goals are set out in resolutions and consensus documents (we can help)
IAHPC Advocacy Initiatives
Advocacy skill building for IAHPC Members
Advocacy course "Advocating for Palliative Care in the Multilateral System" (Basic).
IAHPC Advocacy Presentation for Malaysia Hospice Foundation Workshop, November 7, 2019
Palliative Care Advocacy International, regional, local
Recording of Presentation
London School of Economics Event on The Opioid Crisis, October 22, 2019
Triplets: Three Opioid Crises, One Dysfunctional Parent, The "War on Drugs"
Commission on Narcotic Drugs Intersessional, October 18
IAHPC presentation on the two opioid crises: slides and narrative.
Links for October Newsletter
Dr. Anne Merriman Letter to Dr. Simao
Dr María Teresa García-Baquero Merino Report from RC69
High Level Meeting on Universal Health Coverage September 23, United Nations
IAHPC Oral statement by Dr. Ebtesam Ahmed
WHO Europe Regional Committee 69 Meeting
IAHPC Written Submission, endorsed by seven global health organizations
IAHPC Oral Statement by Dr. Maria Teresa Baquero Merino
IAHPC GAP Response
Commission on Narcotic Drugs Intersessional June 2019 IAHPC Progress Report
United Nations High Level Meeting on Universal Health Coverage
Suggested IAHPC/WHPCA text for negotiations on UHC zero draft
Submission by Latin American Association for Palliative Care to Special Rapporteur for Health on Medical Education
EAPC Congress Berlin 2019 Staff and Board Presentations
The Right to Palliative Care in Prison: Normative, legal, and ethical framework
Presentation of Board Member Steven Radwany: What We See Is What You Get (We Hope): CBME Progress in Postgraduate Hospice and Palliative Medicine Education in the USA, GEriatric Trauma and Palliative Care (GET PC): Predictors of Consultation
Integration of Palliative Medicine Education. An example from Latin America
72nd World Health Assembly
WHA72 Agenda and Documents English
WHA72 Agenda and Documents Spanish
WHA72 IAHPC Advocacy Note (English)
WHA 72 Advocacy Note (Spanish, translated by Dr. Tania Pastrana ALCP)
Side Event on Palliative Care Tuesday May 21
Programme Palliative Care SIde Event WHA72
IAHPC Intervention WHA72 Access to Medicines
IAHPC Intervention WHA72 Emergencies
IAHPC Intervention WHA72 Primary Healthcare
IAHPC Intervention WHA72 Falsified Medicines
IAHPC Intervention WHA72 Women's, Children's Adolescent Health
Report from UCLA Global Health Students on IAHPC Delegation to WHA72
Interactive multistakeholder Meeting at UN to prepare for High Level Meeting statement of IAHPC by Dr Ebtesam Ahmed
IAHPC Side Event 10th Open Ended Working Group on Ageing, New York, April 15-17, 2019
This is a call for substantive inputs, in the form of normative content for the development of a possible international standard on the protection of the rights of older people to “Autonomy and Independence” and “Long-term and Palliative Care”, the two focus areas of the previous 9th session of the Working Group. Please refer to "guiding questions" on each of the focus areas. Inputs should be in English and of no more than 800 words per focus area. IAHPC will prepare a statement and circulate. Let me know if you are interested in submitting.
IAHPC Submission to OEWGA10 regarding Normative Components of Right to Palliative Care in Binding Convention on Rights of Older Persons
Guiding Questions (Normative)- Autonomy and Independence
Guiding Questions (Normative) - Long-term and Palliative Care
Normative Elements of a Right to Palliative Care for Older Persons
Recording of IAHPC Side Event on Normative Elements of a Right to Palliative Care for Older Persons
Power point presentation Dr. Simone Cernesi, Grupo Giotto, Modena, Italy
Power point presentation Ms. Karin Mansell, Organization of American States (19 de abril)
Power point presentation Mr. Marvin Mutch, Humane Prison Project
Power point presentation Dr. Sheila Payne, PACE Program and Lancaster University
Rose Gahire Intervention in Plenary, Day 4, Palliative Care Association of Rwanda
CIDH Consultation Older Persons [OAS Committee on Human Rights]
Resources for those responding to consultations on palliative care for older persons
World Population Ageing DESA 2015 (Has country specific data)
Global Atlas of Palliative Care at the End of Life
Atlas of Palliative Care in Latin America
Los Cuidados Paliativos desde un Enfoque de Derechos Humanos, Rosa Kornfeld Matte, Independent Expert on the Rights of Older Persons
IAHPC Draft List of Resources with Links
Regional Event on Access to Controlled Medicines, Panama. Taller Regional sobre Acceso a Sustancias Controladas
Remarks/Planteamientos of Panama Secretary General Health, Panama Dra Nitzia Iglesias, Secretaria General Ministerio de Salud
Presentación de Dr. Gaspar la Costa sobre Provision de Cuidados Paliativos parte de la Cobertura Universal en Salud
Vienna CND and Preliminary Meetings
Report of Dr. Nahla Gafer
IAHPC Written submission to UNODC for CND62: Solving the opioid epidemics
Ebtesam Ahmed Statement at the UN Hearing
Statement of IAHPC to CND62, given by Dra. Marta Leon, Colombia.
El Salvador Resolution L8. Enhancing the capacity of Member States to adequately estimate and assess the need for internationally controlled substances for medical and scientific purposes, Spanish and English.
Background Document
United Nations Office of Drugs and Crime Technical Guidance: Improving Access and Availability of Controlled Medicines, English and Spanish.
Central America Launch of the Lancet Report, February 2019, Presentations
Cómo la sociedad civil puede colaborar con los gobiernos para implementar el Informe Lancet? -Katherine Irene Pettus, PhD
Acceso a Medicamentos Esenciales en Cuidado Paliativo - Liliana De Lima, MHA
World Day of the Sick, 2019
144th World Health Organisation Executive Board Meeting, 24 January- February 1, 2019, Agenda and Documents
IAHPC Advocacy Note for WHO EB144
How to Use the Advocacy Note
IAHPC Delegation Members Indemnity Agreement
WHO EB Members by Country
Engagement with Non-State Actors
Advocacy Talk at WHO
Statements of IAHPC to WHO #EB144
IAHPC Statement on Proposed Program Budget WHO EB144
WHO EB144 statement on cancer medicines
WHO EB144 Statement on Community Health Workers
WHOEB 144 Statement on Medicines and Vaccines
2018
Commission on Narcotic Drugs reconvened session December 5, 2018
Statement of IAHPC, delivered by Heloisa Broggiato.
Meeting of 41st Expert Committee on Drug Dependence (ECDD) at WHO: potential recommendation to schedule tramadol
Background
The IAHPC Presentation for the Public Meeting Preceding the 41st ECDD
Letter from IAHPC to WHO Director Dr. Tedros Ghebreyesus regarding composition of 41st ECDD
Dr. Tedros letter to IAHPC re 41st ECDD and potential scheduling of tramadol
IAHPC Letter to WHO on tramadol review
Letter from Human Rights Watch to WHO Secretariat re tramadol review
Letter from the Latin American Palliative Care Association (ALCP)
Letter from The Union of International Cancer Control
Letter from the Indian Association of Palliative Care
IDPC Contribution to 41st ECDD Review of tramadol and cannabis
Letter of World Federation of Societies of Anaesthesiologists to 41st ECDD
African Palliative Care Association Letter re tramadol review to 41st ECDD
Letter from Global Drug Policy Observatory, Swansea University to WHO Secretariat re tramadol
Worldwide Hospice and Palliative Care Alliance Letter to WHO Secretariat re tramadol review
Asia Pacific Hospice Palliative Care Network letter to WHO re ECDD review of tramadol
European Association for Palliative Care letter on tramadol to WHO ECDD
Ebtesam Ahmed Report
Global Conference on Primary Health Care, Astana
Declaration of Astana 2018
Palliative Care Ticks All the Boxes: UHC — PHC — SDGs — NCDs — UDHR, Medium
Implementation framework
A DRAFT Operational Framework is currently under online consultation with WHO until 31 December 2018. WHO would appreciate your insights and the dissemination of this consultation broadly within your networks as appropriate. All background documents (including the Operational Framework) can be found here.
Direct links to the operational framework and consultation website are below:
DRAFT Operational Framework Consultation Link
Short video of Gulnara Kunirova on the impact of the Astana Declaration on palliative care in Kazakhstan
Proposed Tramadol Scheduling
38th European Regional Committee Meeting of the World Health Organisation, Rome 17-20, 2018
IAHPC Written Statement on the Background Document "Advancing public health for sustainable development in the WHO European Region"
IAHPC Written Statement on "Progress reports on Investing in Children: the European Child and Adolescent Health Strategy 2015–2020 and the European Child Maltreatment Prevention Action Plan 2015–2020."
Oral Statement on Strategy on the health and well-being of men in the WHO European Region and Associated Resolution
EUR/RC68/Conf.Doc./7 Rev.1.
Interview with Dr. Ulana Suprun, Acting Health Minister, Ukraine
Alma Ata Jubilee WHO Consultation on Primary Healthcare
Astana Declaration on Primary Health Care: From Alma-Ata towards Universal Health Coverage and the Sustainable Development Goals. Contribution of EAPC Primary Care Reference Group
Rationale for the inclusion of palliative care in primary health care Position statement of the European Association for Palliative Care (EAPC) Primary Care Reference Group.
Palliative care and the endless cycle of serious health-related suffering, Lancet.
IAHPC Suggestions for Web Consultation on Astana Declaration.
Inter-American Commission on Human Rights
IAHPC Submission to Division of Older Persons IACHR: "Improving access to internationally controlled essential medicines": July 26, 2018.
INTER-AMERICAN COMMISSION ON HUMAN RIGHTS
Third high-level meeting of the General Assembly on the Prevention and Control of Non Communicable Diseases
IAHPC intervention Civil Society Hearing High Level Meeting on NCDs
Zero Draft of Political Declaration
IAHPC Submission on Political Declaration
Cover Letter to Partners
Ninth Open Ended Working Group on Ageing (OEWGA9), July 23-26, 2018
IAHPC Intervention OEWGA 9 July 25, 2018
American Bar Association Intervention OEWGA9 on Palliative Care
Help Age Cambodia statement on Long Term and Palliative Care in Cambodia for OEWGA9
Videos and Policy Briefs for OEWGA9
Bengal, Arnab Paul
Burkina Faso, Dr. Martin Lankoande
Policy Brief Policy Brief Burkina Faso
Cameroon, Projet de Politique des soins palliatifs B Messing
Chile, Camilo Meneses Cortés
Guatemala, Ebtesam Ahmed
India Dr Abraham Varghese
India, Reverend Abraham Varghese
India, A. Ghoshal
Nigeria, Dr Folaju Oyebola
Nigeria, Dr. Lanre Onigbogi
Ukraine, Dr. Ira Slugotska
Focus Questions on Long Term and Palliative Care
Guiding Questions
UN OEWGA9 Web Page
IAHPC/WHO Policy Brief Course OEWGA9 Summary
IAHPC Report to DESA for OEWGA9
Selected NGO's in country answers to guiding questions:
For any questions, please write contact IAHPC Advocacy Officer kpettus@iahpc.com
Palliative Care and Universal Health Coverage
Flyer United Nations OEWGA - IAHPC Side Event design
Lancet Commission Report, 2017-2018
Comment with declaraction 2018 18TL2795
DeclarAction Lancet
71st World Health Assembly IAHPC Advocacy Note
IAHPC Interventions Agenda Items WHA71
IAHPC Statement on Public Health Implications of the World Drug Problem WHA 71
IAHPC Submission to Human Rights Council regarding Resolution 37/42
IAHPC submission in response to First Draft Report of WHO High Level Commission on NCDs, May 15, 2018
IAHPC intervention at VIENNA GENEVA forum on drug policy
IAHPC statement to Meeting in Geneva
ALCP Congress 2018 Presentations on Palliative Care for Older Persons
Rosa Kornfeld Matte - Los Cuidados Paliativos desde un Enfoque de Derechos Humanos
Maria Lucia Samudio - Cuidado Paliativo Geriátrico - Experiencia desde la práctica privada en Bogotá, Colombia
Jose Mario Lopez Saca - Situación de los Cuidados Paliativos y la Población Adulto Mayor en El Salvador
Session 61, Commission on Narcotic Drugs, Vienna, March 12-16
Dr. Katherine Pettus, Plenary Intervention
Dr. Viktoriia Tymoshevska, Side Event Presentation
IAPCON 2018 (India Association of Palliative Care Conference) Advocacy Workshop
Help Age India Presentation IAPCON 2018.
How does Palliative Care Contribute to achievement of the SDGs? A Preliminary Concept Note
IAHPC Intervention at WHO EB142 given by Dr. Tania Pastrana ALCP President
In English
In Spanish
IAHPC Oral Statements to WHO Executive Board meeting 142, published January 19, 2018
Agenda Item 3.1 on Draft General Program of Work
IAHPC welcomes the new standalone paragraph 38 in the Draft GPW13, which recognises the need to increase palliative care provision around the world for children, adults, and older persons. We also welcome the explicit inclusion of palliative care in the spectrum of UHC essential services. We draw member states’ attention to the recently released Lancet Commission Report “Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage”. The Lancet Commission Report resulted from a three year project involving 61 co-authors from 25 countries. It presents an Essential Package of palliative care services, including medicines, equipment and staffing models that health systems worldwide must provide. It also calls for more balanced global policies to facilitate access to opioid analgesics such as oral morphine to meet legitimate medical need, and limiting non-medical use. The Commission estimates global need for palliative care and pain relief using a new measure of Serious Health- related Suffering. An estimated 25.5 million people died with serious health related suffering – nearly half of all deaths worldwide, in 2015. This includes 2.5 million children aged under 15 (representing more than 1/3 of child deaths). More than 80% of the children, adults and older persons needing palliative care live in the LMICs. The IAHPC and Lancet Working Group is standing by to assist member states in developing policies and budgets to implement the Essential Package.
Palliative care cannot be a substitute for improved access to public health interventions and treatments that could have prevented much suffering and premature death in the first place. But, equally, no health system can expect to meet the needs of its people without providing access to basic pain relief and palliative care.
For more information and advocacy messages see hospicecare.com
Agenda Item 3.6 Access to Medicines
IAHPC notes that availability of internationally controlled essential medicines for legitimate medical purposes has improved in some WHO member states. However, much work remains to make these medicines accessible and affordable to meet palliative care needs of patients and families in countries reporting low to no consumption, according to the International Narcotics Control Board. IAHPC works closely with the INCB, the Commission on Narcotic Drugs and with CICAD at the Organisation of American States, to ensure the rational improved availability of controlled medicines while preventing non- medical use. We are committed to assisting WHO member states to implementing WHA 69/25 on access to medicines. These include internationally controlled essential medicines for the relief of pain and palliative care. We commend the WHO Secretariat for including an indicator for palliative care development in the GPW13, and an attainable target for member states. The WHO Guidance states clearly that palliative care provision requires access to essential medicines (including for example, oral morphine), training, education of health care professionals, public policy, and a small share of the health budget. Our global membership is a resource of expert providers from diverse cultures and contexts. We offer technical assistance to assess the proposed WHO palliative care indicator and target, and can assist with professional education and training programs upon request. Basic training and education of providers is the most safe and ethical way to relieve patient suffering. It supports a resilient culture that prevents diversion and non- medical use of controlled medicines. IAHPC recently collaborated with UNODC to prepare the recent “Technical Guidance on Increasing Access to and Availability of Controlled Drugs for Medical Purposes: Key Areas of Focus” to be discussed with WHO at the next regular meeting of the Commission on Narcotic Drugs. See http://bit.ly/2mVZxB6, hospicecare.com
Translations
Russian Translations by Dr. Ioseb Asadze.
Spanish Translations by Dr. Tania Pastrana.
Advocacy Note for WHO EB 142
WHO Executive Board (EB) Meeting #142 (January 22-27, 2018)
The World Health Organisation (WHO) has just issued its revised Draft Program of Work (GPW13), which will be discussed later this month at the EB Meeting. Palliative care advocates worked hard to ensure that the GPW includes good language on the need for palliative care in sections pertaining to Universal Health Coverage (UHC), communicable and non-communicable diseases (NCDs) and ageing. The new daft has much improved language and a stand-alone paragraph on palliative care. The WHO Technical Team will soon release an indicator on internationally controlled medicines, to be included in the Impact Framework.
The text of the Draft GPW, to be discussed during the upcoming WHO Executive Board meeting, can be found here. There are several references to palliative care outside the stand-alone paragraph, which reads as follows.
38. "There is limited availability of palliative care services in much of the world, which contributes to much avoidable suffering for millions of patients and their families. WHO will emphasize the need to create or strengthen health systems that include palliative care as an integral component of treatment within the continuum of care. The Organization will promote the adequate availability of internationally controlled essential medicines in palliative care, including for the management of pain, while preventing their diversion and abuse.”
Proposed target: Increase the availability of oral morphine in facilities at all levels from 25% to 50%
38. "Hay una disponibilidad limitada de servicios de cuidados paliativos en gran parte del mundo, lo que contribuye a un sufrimiento evitable para millones de pacientes y sus familias. La OMS enfatizará la necesidad de crear o fortalecer sistemas de salud que incluyan los cuidados paliativos como un componente integral del tratamiento en el continuo de la atención. La Organización promoverá la disponibilidad adecuada en cuidados paliativos de medicamentos esenciales controlados internacionalmente, incluyendo aquellos para el tratamiento del dolor, al tiempo que se prevendrá su desviación y abuso".
Meta propuesta: Aumentar la disponibilidad de morfina oral del 25% al 50% en las instituciones de todos los niveles de atención
What you can do. IAHPC is urging national and regional associations, members, and friends, to advocate with their governments to support the GPW, the palliative care language, and proposed palliative care indicator. Provider advocates should identify the officials in their their government responsible for relations with WHO, and get the contact information for their country’s representative at the WHOEB in Geneva. These may be the same or different people. They should introduce themselves to that person, and should prepare a paragraph for them on how their government is working to include palliative care and controlled medicines in their public health programs. This can include successes and challenges, and invite them to get in touch with your National Association — give them the name and contact info of a specific person who can respond to them.
You can send this specific paragraph to your government officials with, or separately from, the more general Advocacy Note we will send out shortly. This will allow your government delegations to make an oral intervention from the floor of the WHO EB meeting concerning the state of palliative care and progress towards Agenda 2030 (SDG Target 3.8) in your countries. Without your giving them this information, the delegation might not know what is happening, and therefore will be unable to address the topic. Government interventions are usually prepared a week or more before the event, so the sooner you can prepare this information and get it to your government officials, the better.
We are in the process of developing an Advocacy Concept Note and will post it as soon as it is approved.
Please do not hesitate to contact me if you have any questions.
Thanks in advance for your work, Katherine Pettus, Advocacy Officer.
kpettus@iahpc.com. Some background reading can be found here.
- UNODC "Technical Guidance on Increasing Access to, and Availability of Controlled Drugs for Medical Purposes: Key Areas of Focus"
Please share with your Health Ministries and Drug Control Agencies.
World Health Organisation Executive Board Special Session
- IAHPC Submission for Draft General Program of Work
- Spanish translation
- Sugerencias - Programa General de Trabajo OMS 2019-2023 (Colombia Associations)
- Government of Ecuador submission
Useful Articles for Advocacy
WHO/IAHPC Webinar on How to Write and Evidence Based Policy Brief
Advocacy is defined as "the act of pleading for, supporting, or recommending.”
IAHPC pleads for, supports, and recommends policies that
- Recognise and include palliative care as an essential service under Target 3.8 of the 2030 Agenda for Sustainable Development.
- Ensure access to affordable palliative care and palliative care medicines as per the United Nations General Assembly Resolution on the World Drug Problem S-30/1.
- Guarantee the rights of older persons to palliative care as per the Inter-American Convention on the Protecting the Human Rights of Older Persons;
- Support palliative care education, research and training;
The IAHPC Advocacy Program engages with policymakers and non-governmental organisations at multiple levels (international, regional, national, and municipal) to raise awareness about the need for palliative care and to advance the IAHPC Mission.
As an organisation in official relations with the World Health Organisation, IAHPC advocates for palliative care policies that align with the World Health Organisation definition and WHA Resolution 67/19.
We partner with other global, regional, and national palliative care organisations, as well as with other global health organisations, and non-governmental organizations that support the rights of vulnerable populations, including older persons. Our global advocacy partners include, but are not limited to: the Worldwide Hospice and Palliative Care Alliance, the International Children’s Palliative Care Network, the Pain and Policy Studies Group, Union for International Cancer Control, NCD Alliance. Our regional partners include, but are not limited to, The African Palliative Care Association, the European Palliative Care Association, the Asia Pacific Palliative Care Hospice Palliative Care Network.
Below is a list of future and ongoing advocacy opportunities and relevant documents for each, including IAHPC statements and interventions
Non-Communicable Diseases Meeting Uruguay 2017, UNGASS 2018
Agenda 2030 and High Level Political Forum
Open Ended Working Group on Ageing #9 2018
World Health Organisation Executive Board Meeting and Assembly 2019
Commission on Narcotic Drugs UNGASS2016 and 2019
Advocacy and Opioid Availability Workshops (Montevideo, Bogota, Guatemala City, San Salvador)
In this section you will find a list of resources and tools that we hope you will find useful in your effort to advance palliative care policies in your country/setting.