Welcome to our last issue of this year's Newsletter.
We are proud of what we were able to achieve through our programs and projects in 2018, and of the support we provided to IAHPC members throughout the globe in the accomplishment of our mission. This message highlights some of these projects and achievements.
Dr. Katherine Pettus, the IAHPC Advocacy Officer, was extremely busy this year (as always!!). She led delegations to several meetings at the United Nations and with UN special agencies, such as the World Health Organization and Commission on Narcotic Drugs. This section focuses on Katherine’s representation at the most important meetings this year in the UN system. Thanks to Katherine’s dedication and resolve, many documents, resolutions, and plans of action now include palliative care language.
IAHPC fielded a seven-person delegation at the 71st World Health Assembly in Geneva, our largest ever. Our delegation consisted of Dr. Felicia Knaul, Director of University of Miami’s Institute of the Americas and chair of the Lancet Commission on Palliative Care and Pain Relief; Dr. Natalia Arias Casais, a Colombian physician and PhD candidate working with the ATLANTES Project in Pamplona; Dr. Frank Manase of the Community Center for Preventive Medicine in Dar es Salaam, Tanzania; and three graduate students from the UCLA Global Health program.
Never have the four syllables comprising the words ‘palliative care’ passed the lips of so many at the UN as on Wednesday, July 25, at the Ninth Open-Ended Working Group on Ageing. The day was dedicated to discussing it — and long-term care — for older persons. Katherine gave the IAHPC statement on the floor during the interactive section, assuring UN member states that we are available to help them improve access to palliative care and essential medicines for their aging populations. The IAHPC also held a side event co-sponsored by many civil society organizations.
There is still much work to do to get a firm UN commitment for a binding convention on the rights of older persons similar to that of persons with disabilities, children, and indigenous groups, but at least awareness was raised of the gaps and work being done to begin filling them by civil society organizations such as IAHPC.
The UN Commission on Narcotic Drugs meeting was one of a series of follow-up sessions to the 2016 UN General Assembly Special Session (UNGASS) held in preparation for the 2019 High-Level Meeting. The purpose was for member states to report on progress toward, and challenges implementing, the UNGASS recommendations. Lukas was one of five speakers selected from non-governmental organizations working to improve access to controlled medicines for pain and palliative care. He gave a compelling presentation highlighting the findings and recommendations of the Lancet Commission report, following presentations by Stefano Berterame of the International Narcotics Control Board, and Gilberto Gerra of the UN Office of Drugs and Crime.
The most important event impacting global health policy this year happened on October 25 in Kazakhstan, when the world’s Heads of State and Ministers of Health adopted the Declaration of Astana during the Global Conference on Primary Health Care. The Declaration commits to the proposition that:
‘Promotive, preventive, curative, rehabilitative services and palliative care must be accessible to all.’
This important document was drafted through a series of consultations with the WHO, UNICEF, governments, and civil society. Initial drafts did not include palliative care, but thanks to advocacy by IAHPC and other palliative care organizations, the approved document includes palliative care in two places.
Katherine served as the moderator in a WHO side event in which, among others, Drs. Erik Krakauer (IAHPC board member) and Sébastien Moine (primary care physician and IAHPC member) presented on the advances of palliative care in primary health care.
We are very proud of, and grateful to, the members of the IAHPC delegation to Astana, for their efforts, commitment, and work with patients in their communities — and for making sure that palliative care is provided in primary health care.
In October we both attended an international congress of palliative care in Lima, Peru, sponsored by the Latin American Association for Palliative Care (ALCP) and the Peruvian Society of Palliative Care. The day before the congress, the ALCP, in collaboration with the IAHPC and FEDELAT (the Latin American Federation of IASP Chapters) organized a high-level meeting to present the findings and recommendations of the Lancet Commission report, as well as advances in palliative care throughout the region.
At the end of the meeting, participants adopted a compromise and call for action to advance palliative care in the region.
In April, the University of Miami hosted the Global Launch Symposium on the Lancet Commission report, Alleviating the Access Abyss in Palliative Care and Pain Relief — An Imperative of Universal Health Coverage, during which the Commission launched its findings and recommendations. As a strategic partner, the IAHPC collaborated with the university and the Lancet in the design and implementation of the symposium, which featured plenary panels of leading global health and palliative care experts from around the world.
In the welcome message to participants, WHO Director General Dr. Tedros asked all of us to work together toward a dramatic expansion in access to quality care on a global scale. Commissioners called on 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.
Led by Dr. Felicia Knaul, the Lancet Commission was able to:
Liliana moderated a session on the role of global and regional associations and networks. During this session, representatives of the African Palliative Care Association, Asia Pacific Hospice and Palliative Care Network, Caribbean Association for Palliative Care, European Association for Palliative Care, International Children’s Palliative Care Network, and the Latin American Association for Palliative Care presented and discussed how advocacy efforts and collaboration between academia and civil society will catalyze change globally, and in countries in each region.
All participants agreed on a joint statement and call for action called the ‘Miami DECLARAcTION,’ which was published by the Lancet.
Throughout the year, the IAHPC has been working with the University of Miami to coordinate the implementation process of the recommendations. The implementation group includes representatives of palliative care civil society organizations as well as academia and others. [For more on the Commission report: University of Miami dedicated page; Lancet website.]
We implemented two workshops on the availability and rational use of opioids: one in India, the other in the Dominican Republic.
India: Organized in collaboration with the Indian Association for Palliative Care, before the start of the IAPCON in New Delhi in February. Thanks to the work and effort of pain and palliative care leaders in India and the support of civil society organizations (especially Pallium India), in 2014 India enacted an Amendment to its Narcotic Drugs and Psychotropic Substances (NDPS) Act, unifying the law for the whole country, which should improve access and facilitate the procurement and distribution of opioids. However, implementation has been slow. The workshop brought together regulators and prescribers from seven states to identify barriers to the Amendment’s implementation.
During the discussions it became clear that rules governing the Amendment need some clarification and corrections. For many, the workshop was the first opportunity to meet their state’s drug and NCDs authorities, and even brief opportunities to socialize proved extremely helpful.
Dominican Republic: Organized in collaboration with the Dominican Association for Palliative Care and the Latin American Association for Palliative Care. Guests included pain specialists, palliative care specialists, representatives of the government public fund, and Ministry of Health authorities and representatives.
Dr. Stefano Berterame, Chief of the Narcotics Control and Estimates Section of the International Narcotics Control Board (INCB) Secretariat in Vienna, and Ms. Julianna Erthal, Officer of the INCB Secretariat, sent a video.
Participants, working in groups, identified challenges to safe and effective access to medicines. Opioids are available in only three of the country’s hospitals, and are limited in cities other than Santo Domingo. There is no access at all through street pharmacies and, adding to the problem, the cost of medication is high.
Participants developed an action plan with representatives of civil society organizations, academia, and government to eliminate barriers and implement solutions to ensure access for legitimate medical use of opioids, in particular for pain treatment and palliative care.
The Vatican’s Pontifical Academy for Life (Academia Pro Vita) created an advisory group to study the worldwide expansion and development of palliative care. The goal is to increase awareness of the effectiveness and deep moral value of palliative care, and serve as a driver to unify members of all religions and faiths in this initiative. The advisory group developed a set of recommendations for 13 stakeholder groups to promote and disseminate palliative care and the essence of caring, respect, and values of palliative care, which were published as a White Paper. The APV organized several conferences – the first one in February in Rome to present these recommendations and the global status of palliative care development. Speakers included Dr. Pettus, who is a member of the advisory group to the APV.
We look forward to continuing to work with the Academia Pro Vita. Congratulations to Monsignor Vicenzo Paglia, Dr. Nunziatta Comoretto, and Dr. Gaetano Corlone for their vision and efforts.
Last month we launched a fundraising campaign to support the work of IAHPC and our mission drive programs. We hope that you can contribute and will invite your colleagues and friends to do so!
We are grateful to all our donors, knowing that each one believes in IAHPC’s mission and in our goal to have an impact on the promotion and development of palliative care. Our ability to continue to help others depends heavily on financial support, so please consider donating to IAHPC. It is easily done through our website here.
Any amount helps and counts in our efforts to continue the work that we do.
We take this opportunity to recognize and give thanks to the IAHPC Board of Directors, the Officers, staff, and members for their hard work and loyalty. It’s been one year since Ms. Alison Ramsey joined us as senior editor of this Newsletter; she has done a fantastic job and we are pleased to have her on the team!
We could not have been able to achieve all that we have without the generous support of our board of directors, our members, donors, foundations, and organizations. We are especially grateful to Open Society Foundations, the Pettus Foundation, and the US Cancer Pain Relief Committee for their support.
We face many challenges in the future, especially our long-term sustainability. We are aware that there are financial constraints and have prepared ourselves to meet these challenges. Our strong commitment to supporting the development of palliative care around the world will continue to be our driving force. We wish to thank all those who make our work worthwhile — the patients and their families, the health care workers, and the volunteers who dedicate and give so much to palliative care.
Best wishes to all of you, to your friends and family members for the coming holidays; we hope that next year will bring happiness and success to all.
Lukas Radbruch, MD
Chair, Board of Directors
Liliana De Lima, MHA