Last month, the World Health Organization (WHO) Director General Dr. Tedros Ghebreyesus presided over a second roundtable with representatives of civil society organizations (CSOs) working in palliative care in a variety of global settings. Dr Tedros and the entire Secretariat pledged to engage with CSOs working in the field, even proposing a joint program, and celebrating world hospice palliative care day together.
We left the meeting feeling supported and motivated, as these roundtables were the culmination of years of constructive collaboration between the WHO and palliative care organizations in official relations: the International Association for Hospice and Palliative Care (IAHPC) – (of which I am the ED) — and the Worldwide Hospice Palliative Care Alliance (WHPCA).
Unfortunately, our elation was short lived. A few days ago, we received new guidance from the WHO Secretariat regarding how CSOs in official relations should interact with the World Health Assembly (WHA), the governing body of the WHO. For those who may not know, the WHA holds a meeting during May, every year. This year marked the 74th WHA and it was held virtually. The WHA is composed of member states and is quite political. Until this year, representatives of all CSOs in official relations could take the floor at the WHA after member states had spoken; we were allowed to hold side events, and to give brief interventions on agenda items relevant to our field of expertise. None of that was possible this year, and as a result, palliative care has been sidelined in the global health discourse.
The new WHO guidance came one week before this year’s WHA, which ran until June 2. Since the guidance cap allows only five (out of hundreds of CSOs in official relations) to take the floor per agenda item, we were forced to form “constituency groups,” which would combine issues without appropriate planning. Although we scrambled to join or form a constituency group of CSOs working in palliative care, cancer care, and rights of older persons, our group was not selected.
Undeterred, both the IAHPC and the WHPCA submitted “individual” written statements of 300 words on the WHA website. These had to be reduced to one minute oral statements to be delivered by a member of our delegations, a modality also recently approved before the beginning of the Assembly.
All these challenges and limitations for CSOs interventions in the WHA have limited our ability to raise the issues we fight for – in our case, integration of palliative care into health policies and health systems. We are deeply concerned about how this new modality is impacting hundreds of organizations, especially those in Low- and Middle-Income countries, which experience more technical challenges, fewer resources, and limited workforce capacity for effective advocacy and networking.
We will continue to advocate for palliative care in the WHA and other fora and call on national palliative care organizations to discuss the issue of civil society participation with their mission representatives in Geneva, so that they in turn raise their concerns in the 75th Assembly next year.
Effective advocacy requires the participation of nongovernmental organizations that represent users and providers and as such have firsthand information on the issues and challenges of palliative care provision. They also serve as experts in the different fields of work. There are great examples of effective collaboration between CSOs and government officials, including in palliative care. We are committed to continue serving as global platform for palliative care, by implementing innovative ideas and strategies to amplify the voice of users, workers, caregivers, and advocates. eHospice is one of the great ways to do this among others – we can raise our voices through these amplifiers and continue working together to ensure that palliative care is integrated, and we realize our vision to alleviate suffering around the world.