By Dr. Katherine I. Pettus, PhD
IAHPC Advocacy Officer for Palliative Care Medicines
IAHPC has been happy to make a basic advocacy course available to members and, in response to popular demand, is now developing a more skills-oriented series to be released in September. It will join other basic advocacy resources already available on our dedicated Advocacy Program webpage.
Health workers aren’t taught advocacy in medical or nursing school. Students might not even know what it is or why they need to learn it, just so long as their patients are getting what they need in terms of medicines and services. But advocacy addresses unmet need: advocacy brings the voices of the countless, often invisible patients and their caregivers with palliative care needs into the public square to request policies and budgets for essential medicines and services.
In 2019, IAHPC’s board and staff met in Berlin to develop a Strategic Plan for 2020-2024. Advocacy is an essential activity to disseminate our vision of a world free from health-related suffering, and a key pillar of that plan. National, regional, and global palliative care advocates share their stories, including evidence of unmet need for services, and work to hold their governments accountable for their multilateral commitments to make palliative care available for all who need it.
Only with advocacy can providers and service users, both patients and families, move our health authorities beyond pallilalia—just talk—to informed action.
Kenya Hospices and Palliative Care Association (KEHPCA) kindly invited me to discuss advocacy for its Continuing Medical Education (CME) program [watch my presentation here]. Members who would like to host a similar session should contact me for more information. I can also present in Spanish.
My CME presentation was complemented by wonderful updates and historical perspectives from both Dr. Zipporah Ali, retiring executive director of KEHPCA, and Ms. Rose Kiwanuka, RN, former executive director of the Palliative Care Association of Uganda. Rose is a recent recipient of palliative care services who is now doing community awareness work in her home village. Dr. Ali is passing the very bright torch of her leadership of KEHPCA to Ms. Mackuline Atieno, former program officer at the African Palliative Care Association. We look forward to working with her.
As June 26—the International Day Against Drug Abuse and Illicit Trafficking—fell on a Saturday this year, the United Nations Office of Drugs and Crime released its 2021 World Drug Report on June 24. The report is a tour de force of statistics and analysis that vividly reiterates what we now know so well: access to medical opioids for palliative care (and other) needs remains stubbornly stuck at dismal, unacceptable levels in more than 70% of the world. Yet the illicit drug trade in synthetic opioids is flourishing, nonmedical use is escalating, and fentanyl overdoses are through the roof in the US, accelerated by the pandemic. For detailed information on the opioids situation, see Book 3 of the report, Drug Market Trends: Cannabis, Opioids.
The theme of this year’s World Drug Day—“Share facts on drugs. Save lives.”—reflects the global health ideology that prioritizes saving lives over quality of life. Dr. Odette Spruijt, a new IAHPC Advocacy Focal Point for Australia, spoke about global inequities in access to controlled medicines. She was chosen as a civil society speaker by the Vienna NGO Committee on Drugs, which also selected Ms. Smriti Rana of Pallium India to present at a follow-up webinar on the World Drug Report, scheduled for July 13, 2021 from 10-11:30 a.m. CEST. Follow us @iahpc and @theVNGOC on twitter for webinar registration information when it is available.
FYI: Dr. Spruijt joins Ms. Rachel Coghlan, our other Advocacy Focal Point for Australia.
The World Drug Report estimates of an uptick of populations using opioids non-medically are based on annual reports from individual governments. Why is it that the very same governments fail to submit similarly accurate estimates of the need for medical opioids to relieve suffering? This failure reflects a systemic communication deficit between national palliative care organizations, pharmacists, and the national competent authorities responsible for for submitting estimates for their country’s annual opioid needs to the International Narcotics Control Board.
Many national competent authorities are unaware of the desperate need. Those reporting decades of inadequate opioid consumption base their annual estimates on previous years, perpetuating a preventable cycle of suffering that could be interrupted by updated, accurate assessments of health system needs for controlled medicines. Aware of the institutional disconnects that result in inaccurate annual estimates and the serious health-related suffering that results, the International Narcotics Control Board (INCB) has developed a Learning program.
The INCB has asked the IAHPC to disseminate information about this eLearning platform that offers self-paced online modules that are open to anyone, free of charge. There is a list of public courses as well as more than 400 modules reserved for UN member state institutions and international organizations upon prior agreement with UNODC. National palliative care organizations are encouraged to liaise with their competent authorities to promote the Learning modules, and consult with them to calculate more accurate estimates.
If your institution or organization is interested in accessing this restricted content, please contact your UNODC field office or the UNODC eLearning team. The modules are available in English, French, and Spanish. On INCB’s advice, I have asked our Advocacy Focal Points in more than 12 countries to share information about the Learning program with their competent authorities.
Our Advocacy Focal Point for Canada, Ms. Monica Do Coutto Monni, executive director of the Near North Palliative Care Network, is working with Gray Panthers New York to develop a project based on a powerful, hour-long Facebook video, Honoring Nursing Home Lives: The COVID Tragedy.
The collaboration envisions creating and disseminating local videos to publicize the need to embed palliative care in nursing homes and home-care services everywhere. Monica’s team will create the first video that, with its focus on small communities, she hopes will be a small window on the most neglected of the most neglected: those who died with no support from a health care team. For more information or to participate, contact Jack Kupferman.
To learn more about Kenya Hospices and Palliative Care Association, the Palliative Care Association of Uganda, the African Palliative Care Association, Pallium India, and the Near North Palliative Care Network, visit the IAHPC Global Directory of Palliative Care Institutions and Organizations.
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