Dr. Katherine I. Pettus, PhD, IAHPC Advocacy Officer for Palliative Care Medicines, with her latest roundup of advocacy news.
This month we highlight two inspiring examples of international advocacy from two different continents. Dr. Anne Merriman, Founder of Hospice Africa, gave us permission to publish her correspondence with Dr. Mariângela Simão, an Assistant Director-General of the World Health Organization, following WHO’s decision to withdraw two key cornerstone guidelines [see a Joint Position Statement response endorsed by IAHPC and many others]. Dr. Merriman is considered the founding mother of African palliative care at Hospice Africa Uganda (HAU) and the Institute for Hospice and Palliative Care in Africa (IHPCA).
Dr. Merriman’s letter to Dr. Simao, found here, opens with this text:
“I am aware that there is a lot of research going on in Western and richer countries, where the social situation due to their stage of development is so different to the poorer countries. HAU introduced and has been producing cheap and effective oral morphine, here in Uganda, since 1993 for use of patients in the home. We follow all the instructions internationally and locally to conform to regulations on dispensing a class A drug and we are overseen by the National Drug Authority of Uganda.
“We have had no diversion of this oral solution, or any addiction problems, for all 25 years of our existence. We have managed at least 31,000 patients, whose pain has been controlled, on this solution. Now it is available free to all who are prescribed by a recognized prescriber, and paid for by our government. This oral solution is also prescribed by the palliative care specialist nurses we have trained throughout the country. With pain control, palliative care has been introduced into a further 33 countries since we commenced with a vision of ‘Palliative care for all in need in Africa’ in 1993. September 23, 2019, is the close of our silver jubilee year.
“The oral morphine we make at HAU is a dilute solution that cannot give a ‘high’ when given orally and titrated by our experts to provide pain relief and minimize side effects. Our patients here die without pain and in peace. For those early on in the cancer journey, they go back to work on their morphine. I have had a policeman patient directing traffic with cancer of the rectum, and on high-dose morphine, without any problem because mentally he can function. As Dame Cicely said to the suffering patients: ‘You matter because you are YOU and you matter to the end of your life…and we will do all we can to help you to ‘live until you die.’”
Dr. Merriman’s letter concludes with this wish: “We here are surrounded by this suffering on a daily basis. I would like to see the world understanding and helping us to carry on with this affordable approach in the Lower-Middle Income Countries.”
Our other example of international advocacy comes from Dr. María Teresa García-Baquero Merino, who represented IAHPC at the 69th World Health Organization (WHO) European Regional Meeting in Copenhagen in September at her own expense. I prepared her through email and phone calls. Dr. García-Baquero Merino’s detailed report on the conference can be found here.
Dr. Merino concludes her report by saying:
“This was an amazing experience for me, which I recommend to those who want to help change the status quo of palliative care in global health. Being at the WHO European Headquarters in Copenhagen appealed to my international and political interests. Having worked and studied the European Horizon 2020 as Madrid Regional Palliative Care Coordinator a few years ago, it was an absolute privilege to hear WHO directors give account of results and future plans.
“I was surprised and disappointed by what appeared to be WHO interest in countries, rather than people, and by the absence of ministerial advocacy for palliative care. The lack of unambiguous support for palliative care was hard to witness.
“However, the amazing support from civil society represented by many other organizations present more than compensated for this official deficit. It was wonderful to network – with an emphasis on the second syllable — with other NSA [non-state actor] representatives, to find out what they believed, what we had in common, and how we should use our science and commitment to help suffering patients. It was very beautiful to meet people who are passionate about their own fields, and a pleasure to work with them between the formal plenaries. The ambiance was great, and everyone was really helpful and happy to guide me in this first experience at this level of regional advocacy. We were able to support each other’s organizational statements in plenary with some minor changes and significant amounts of debate and well-argued suggestions that strengthened our own visions. Being able to be there has been an unforgettable experience and I have learned a significant amount about aspects of clinical issues I was ignoring. [See here for the IAHPC’s written and oral submissions, endorsed by other global health organizations.]
“Representing the IAHPC was a huge responsibility. Although I often felt I wasn´t doing enough for palliative care advocacy, some of my new friends reassured me, saying, ‘You have talked enough about palliative care at every opportunity for us to really appreciate its relevance.’ Although Copenhagen is a lovely city I had visited before, I learned to see it with new eyes, the eyes of someone who wants to collaborate with others to alleviate suffering in multiple ways. EURO 69 has really opened new horizons for me and especially for my patients.”
Dr. García-Baquero Merino trained at St. Joseph’s Hospital and St. Christopher’s Hospice in London, and is a Professor in Bioethics in the Universidad Católica San Antonio de Murcia (UCAM) and a Palliative Care Consultant at Addenbrooke's Hospital, Cambridge.
It could be your turn next: don´t let the opportunity to represent IAHPC at a regional, national, or international meeting pass you by! It is worth every minute, as people living with serious health-related suffering and life-limiting diseases deserve to be championed. Universal Health Coverage is incomplete without appropriate, timely palliative care for all patients and families.
October 1, 2019 was the International Day of Older Persons, as I mentioned in last month’s report. IAHPC has done a lot of international advocacy work to promote the right of older persons to palliative care and pain medicines, as you can see on the IAHPC Advocacy Page. We encourage you to start thinking about events and advocacy for October 1, 2020, which is the next International Day of Older Persons.
We haven’t forgotten about our promise to reveal more about the IAHPC Advocacy Course to be held online! It will be available to institutional and individual members by mid-October. We had to smooth out some technical glitches before presenting to board and staff for a preliminary review.