Dr. Katherine I. Pettus, PhD, IAHPC Advocacy Officer for Palliative Care Medicines, with her latest roundup of advocacy news.
This summer I have made Baltimore, Maryland, my base of operations, where my sister lives, as I am trying to organize care for her, since she lives alone and is experiencing the return of a slow growing oligodendroglioma (brain tumor). She has opted for chemotherapy to at least arrest its progress, so lots of dots need to be joined up! Caregiving is a rich experience I would recommend to anyone who can make the time for it, as millions are doing around the world, unpaid and untrained, given the lack of community-based palliative care. Support for families and caregivers is a key plank of IAHPC advocacy.
My first advocacy meeting in July was at Georgetown University Law School for ‘Affordable Medicines Now,’ to network with other CSOs (civil society organizations) and raise awareness about lack of access to internationally controlled essential medicines and the IAHPC Opioid Price Watch Project
Dr. Afsan Bhadelia (Lancet Commission on Palliative Care) and I also met with some senior staff at the Georgetown Law School Global Health Department to discuss how we might use the Lancet Commission DeclarAction to collaborate with academia to disseminate the Report more broadly.
On July 5, Afsan and I attended the Interactive Civil Society Hearing on the Political Declaration on Non-Communicable Diseases (NCDs) at the United Nations, hoping to have a chance to comment on the Zero Draft, which contained no references to palliative care at all. For more information on this advocacy initiative, which has been partially successful thanks to the hard work of the delegation of the Republic of Panama, see the uploads on our Advocacy Page, and my EAPC blog on the topic.
Sadly, our delegation was not allowed to give any interventions all during the Interactive Hearing, which prioritized hearing from the disease groups (diabetes, heart disease, cancer, etc.) and CSOs challenging the socioeconomic causes of the NCD epidemic in much of the world. The WHPCA will be participating in the High-Level meeting in September, while I attend some conferences in Europe (stay tuned for those reports!).
Later in the month I traveled to El Salvador to support palliative care colleagues who have succeeded in reviving and formalizing the board of the El Salvador Asociación Salvadoreña para el Estudio y Tratamiento del Dolor y Cuidados Paliativos (Salvadoran Association for the Study and Treatment of Pain and Palliative Care). Dr. Mario Lopez Saca and I met with Dr. Andrea Chacon, the Ministry of Health official in charge of developing a national Palliative Care Strategy, and gave her a heads up about the upcoming (now concluded) 9th Open-Ended Working Group on Aging in New York, where UN member states will be considering palliative care for older persons. After our meeting, Dr. Chacon gave the Mission of El Salvador at the United Nations the information they needed to speak at the OEWGA about the country’s progress in developing palliative care. Which she did, on July 25 (see below for details on the OEWGA9).
Dr. Mario and I then attended a lunch meeting organized to introduce the Deans of medical and nursing schools in El Salvador to the new Association, and to inform them of the obligations under international law to improve palliative care education, including around the rational use of internationally controlled essential medicines. We emphasized how these obligations require a health workforce that is trained to prescribe and dispense opioids. I gave a brief talk about the international normative framework and human rights obligations of all countries, particularly those in the Inter-American system that have ratified the Convention on Protecting the Human Rights of Older Persons, which contains explicit rights to palliative care and pain medicines.
Next morning, I took the early bus to Guatemala City to participate in the 3rd International Congress on Palliative Care, to give a pre-Congress workshop talk on the Spirituality of, and in, Palliative Care and an afternoon lecture on how IAHPC participates in the multi-lateral institutions to advance palliative care and access to medicines worldwide. I was privileged to listen to presentations from Dr. Marvin Delgado Guay on The Collective Soul, and Dr. Marcos Gómez Sáncho from Spain, among other luminaries.
From Guatemala, I flew straight to New York for the UN’s 9th Open-Ended Working Group on Ageing (OEWGA9), which was considering the questions of long-term care and palliative care, as well as autonomy and independence in the context of a human rights approach for older persons. IAHPC held a side event co-sponsored by many civil society organizations. See the flyer and presentations here.
I gave the IAHPC statement on the floor during the interactive section of the Working Group, assuring UN member states that we are at their disposal to help them improve access to palliative care and essential medicines for their aging populations. We will continue to upload the statements of non-governmental organizations and member states on palliative care as they come in, and may try to curate a volume that includes all the inputs, including policy briefs for this historic meeting.
Never have the four syllables comprising the words ‘palliative care’ passed the lips of so many at the UN as on Wednesday, July 25 of this year, the day dedicated to discussing it, and long-term care, for older persons. 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.
From New York I took the train straight to Washington, DC, for a meeting at the Organization of American States’ Inter-American Commission on Human Rights, which was inaugurating its new Division on the Rights of Older Persons. The Division’s job is to help member states in the region implement the Inter-American Convention on the Rights of Older Persons, which includes the right to palliative care and pain medicines. I gave a brief panel presentation on the work IAHPC is doing to help countries develop their workforces and improve access through educational seminars convened at the request of national associations. The meeting was supportive and synergistic, and I look forward to ongoing collaboration with the Human Rights Commission.
Our September issue will feature some guest columns from Cambodia and Honduras, and my report from the 14th Global Conference of the International Federation on Ageing in Toronto, where I will give a paper on Older Persons’ Right to Palliative Care.