By Dr. Katherine I. Pettus, PhD
IAHPC Advocacy Officer for Palliative Care Medicines
In its capacity as a “non-state actor” in official relations with the World Health Organization, the IAHPC virtual delegation participated actively in the consideration of three agenda items at the 148th meeting of the World Health Organization Executive Board. (Note: Non-state actor interventions are always presented after official government statements and WHO Secretariat briefings on the topic.) Our delegation comprised Advocacy Focal Points Dr. Lukas Radbruch, IAHPC Board Chair; Dr. Rumana Dowla, Bangladesh; Dr. Sushma Bhatnagar from India; and Dr. Billy Rosa from the USA. Their statements pertained to the agenda items on COVID-19 response, access to medicines, and palliative care for persons with disabilities.
Prior to the meeting, our advocacy focal points worked with their governments to help ensure that a resolution on the highest attainable standard of health for persons with disabilities (PWD) listed palliative care as an essential service. We were happy that the final text included palliative care, and that the governments of Zambia and Bangladesh both mentioned palliative care in their official interventions related to PWD. Dr. Francis Bwalya, Zambia’s permanent mission representative to the United Nations, drew attention to the country’s new national action plan focusing on palliative care, which he said “forms an integral part of Zambia’s National Health Strategic Plan 2020-2021.” Three cheers for Drs. Billy Rosa, Mwate Joseph Chaila, Abidan Chansa and Rumana Dowla for their preparatory work on this. And to Dr. Dowla for her communications with the Bangladesh permanent mission, whose representative told the WHO EB that "rehabilitation and palliative care facilities can provide a better chance for people with disabilities to succeed in life. Universal health coverage policies must include services such as rehabilitation and palliative care responding to needs of PWD." Our task is to follow up with the WHO Secretariat and interested governments regarding implementation of these public and very welcome commitments.
Our sister organization, the Worldwide Hospice Palliative Care Alliance (WHPCA), submitted statements on the need to include palliative care in COVID-19 responses, national noncommunicable disease strategies, and programs for persons with disabilities. One statement was given by Ms. Ashla Rani, a person living with disabilities who works with Dr. M.R. Rajagopal of Pallium India; her 70-second statement can be seen on YouTube.
The IAHPC has applied for a virtual side event for the 64th Session of the Commission on Narcotic Drugs (CND) to be held virtually and in person on April 12-16. Our NGO cosponsors are Harm Reduction International and Dejusticia (Colombia), and our only member state sponsor to date is Belgium. The International Narcotics Control Board is cosponsoring as a UN organization, and we are working with UNODC and WHO to add their imprimatur. Stand by for more information, and follow us on Facebook and Twitter for up-to-date news on whether the CND Secretariat accepts our application, and for more information on how to register, date, time, speakers, etc.
An IAHPC member in San Diego, palliative care physician Dr. Galina Khemlina, organized a call with the United Nations University in Malaysia to discuss launching a palliative care course in 2021. We were joined by Ms. Cristina Montanes, IAHPC member and chaplain for North Coast Hospice in Carlsbad, California; Dr. Ednin Hamzah, director of Hospis Malaysia; and Dr. Angelique Robert, a palliative care physician from Sweden. UN University officials clarified that it does not offer courses or have students, but organizes roundtables and publishes policy briefs for the WHO and other UN agencies. They are interested in pursuing the idea of a series of roundtables on palliative care advocacy, so our ad hoc working group is preparing objectives and a concept note to move this important initiative ahead. Stay tuned for more information!
If you haven’t already, check out this excellent Geripal podcast with Dr. Jessica Zitter, MD, MPH, who discusses her new film, Caregiver, A Love Story. The film stresses the key role of informal (family) caregivers who look after patients enduring serious health-related suffering at home—told through the lens of one couple, Bambi and Rick. As palliative care workers well know, their unit of care is the patient and family, who are often unpaid caregivers. IAHPC advocates for governments to develop paid family leave policies for caregivers, similar to those in Costa Rica, Belgium, and some US states. The Geripal podcast highlights how palliative care teams in the US—ironically, given their dedication to patient-centered care—often overlook the family members who provide what is often intensive personal care following hospital discharge. Since the film is not yet widely available via a major distributor, IAHPC is planning a screening, that will be free of charge to IAHPC members, with Dr. Zitter, a palliative and critical care practitioner in a public hospital in northern California, in the coming months.
As readers of this column know, the IAHPC has been working for years with the older persons’ rights community, including the Independent Expert on the Rights of Older Persons (IE) at the Human Rights Council in Geneva. The newly appointed IE, Dr. Claudia Mahler, has published two calls requesting information for her 2021 reports.
The first call for input relates to her thematic report on ageism and age discrimination
Palliative care providers: Do older persons in your country face discrimination in accessing palliative care for chronic and other conditions, including COVID? If so, please send Dr. Mahler more information.
The second call relates to the human rights of older women.
Palliative care providers: Are older women in your country carrying extra burdens as unpaid family care palliative care providers? Do they face discrimination in accessing palliative care for serious conditions common to older persons? If you have examples of this, please share them with Dr. Mahler.
Both calls are open until March 22, 2021. Contributions are welcome in English, Spanish and French; to guide your input, you can download a document in any of these languages from here: the first call, the second call.
Stay tuned for more information and announcements!
The Western Pacific Palliative Care Advocacy Network is holding its second virtual meeting on February 17, 2021, where the focus will be on learning about advocacy and discussing issues specific to members’ countries and the region as a whole.
I will be giving a short advocacy skills workshop, which will be followed by smaller group discussions to give members the chance to “meet” and speak with each other. The overall aim is to use the group discussions to identify priorities for advocacy in 2021 and beyond.
If you would like to attend, registration is required. Use this zoom link to register in advance.
To learn more about the Worldwide Hospice Palliative Care Alliance (WHPCA), and Pallium India visit the IAHPC Global Directory of Palliative Care Institutions and Organizations.