United Against Cancer v1: Dr. Luyirika and Zainab Shinkafi-Bagudu on Palliative Care in Africa

In this episode, Dr. Emmanuel Luyirika, a renowned leader in African palliative care, is interviewed by Zainab Shinkafi-Bagudu. Dr. Luyirika shares his extensive experience in improving palliative care services across Africa, emphasizing care integration, policy development, and innovative funding solutions. Learn about the challenges and strategies for enhancing palliative care in low- and middle-income countries and how leveraging data can improve cancer treatment and patient outcomes.

Dr. Zainab Shinkafi-Bagudu is a global cancer advocate, a pediatrician, a UICC Board Member, UICC President-Elect 2024-2026, Founder of the Medicaid Cancer Foundation, and the Chairperson of First Ladies Against Cancer (FLAC). Dr. Bagudu is working with the state ministries of health, education, and women affairs to implement programs to sustainably improve menstrual hygiene, girl-child education, economic empowerment of women, and put an end to gender-based violence. Zainab Shinkafi-Bagudu is a member of the Editorial Board of OncoDaily.

Dr. Emmanuel Luyirika is the Executive Director of the African Palliative Care Association, a pan-African organization focused on palliative care initiatives in multiple African countries. He serves as a board member of the Worldwide Hospice Palliative Care Alliance. Dr. Luyirika is a co-investigator in ongoing palliative care studies and has conducted research on HIV, cancer, and palliative care. He has also served on Data Safety Monitoring Boards and technical steering committees for various research projects in Africa. Additionally, he is a co-author of several chapters in books related to cancer and palliative care.

Zainab Shinkafi-Bagudu: My name is Zainab Shinkafi Bagudu and we’re conducting this interview in collaboration with OncoDaily to unite against cancer. The aim is to hear about the good work that many able advocates across the world, many able scientists and researchers are doing to improve cancer control and reduce the burden of cancer as it currently is. Today we’re having a chat with Dr. Emmanuel Luyirika who is the, should I say, Mr. Palliative care in Africa.

Thank you, he has. So we have been talking about different aspects of cancer control and I believe this is the first interview that we’re going to dedicate to that end of the spectrum. That might not be so unusual for you because as we know palliative care is one of the least focused on areas, especially for us in low middle income countries.

Despite having very high burden of cancer and a high mortality and the majority of the patients that we see actually need palliative care. But we see so many cancer control plans that do not focus on that end of the spectrum and do not allocate adequate resources. So without taking away from the props of your conversation, I want to start by welcoming you.

Thank you for all the work that you do in Uganda, in Africa and across the world. I want you to give us a brief background of yourself. I have a very long bio, two pages of you here.

The executive director at the African Palliative Care Association. He’s a board member at the Worldwide Hospice Palliative Care Alliance, the president of KOSU Board Hospital, clinical and country director at Malmi International in Uganda from 2022 to 2011.

He has extensive experience both in and out of government.
But beyond what I have mentioned, he has committee membership in WHO, UNICEF, UNAIDS and so much more. Please tell us a little bit, maybe with focus on your research experience that I haven’t touched on. You’re welcome, doctor.

Emmanuel Luyirika: Thank you very much. It’s my pleasure to be here to talk about palliative care on the continent. Thank you for that.

My entry into palliative care was through the HIV route, where I spent a lot of time working on the HIV problem in Africa. Palliative care is a major need for people with cancer in because more than 80% of our patients present late, but also because of the symptom burden that patients face, whether they are being treated for cure or they are just being given palliation.

The other challenge that we see on a daily basis is the fact that patients with cancer and with palliative care needs often do not have access to symptom control medicines, especially the pain control medicines that are internationally controlled, as well as access to radiotherapy, both for cancer palliative care emergencies and for radiotherapy for palliation.
Those are key issues.

Zainab Shinkafi-Bagudu: Well, thank you so much. I think a lot of people do not even really appreciate the depth and the meaning of palliative care and the modalities that can be used. At the end there, you mentioned the use of radiotherapy for palliative care, and that is something that is often not totally understood.

We hope to reach a lot of lay people with this interview and create more awareness around these kinds of issues. So, of course, in your explanation, you spoke about palliative care, and palliative care is really that specialized arm of medical care that focuses on providing relief from pain and other symptoms of serious illness, and it can also help to cope with the side effects of the treatment.

So, thank you very much for that.

So, doctor, you have led the organization in expanding palliative services across several African countries. Can you share, or maybe before we go to that vision, let me start by asking, having served on so many technical committees at institutions like the WHO, UNAIDS, and so on, how have these experiences influenced your approach to developing first and implementing palliative care programs across Africa? So, with that question, you can give us a little bit of insight into the work that you’re doing across Africa with regards to palliative care.

I’m inciting significant examples of a policy or initiative that has benefited from your being on it.

Emmanuel Luyirika: Okay. Thank you very much. Of course, at country level, the major starting point is governments having a defined policy for palliative care.

We’ve supported several countries to develop their national palliative care policies, and that is the summary of that work is published in e-Cancer. But just to mention a few of the countries, the very starting point was Rwanda. We worked with Rwanda to formulate their national palliative care policy.

Then we had Eswatini, which was by then called Swaziland. And then we had Zambia, Malawi, Mozambique, Tanzania, and then Botswana.

So, all those are countries which we worked with to set up national palliative care policies.
We’ve also worked with countries in partnership with other support from other entities to improve access to controlled medicines that are needed for palliative care. For example, we’ve worked with the United Nations Office on Drug and Crime to improve access to controlled medicines in Democratic Republic of Congo.

That has been our recent project that we started during the COVID pandemic, and that involved training healthcare providers in 10 hospitals across DRC and working with them to develop, to the level of even developing model guidelines that are now available even on our websites, which health workers can use to improve access to controlled medicines, and not only for palliative care, but for other associated conditions, like for those who have mental health issues, those who have substance use disorders.

So, we used the capacity that was provided then to develop a tool that can be used across the board. We’ve also had teams from Rwanda, from Botswana, from Zimbabwe, from Malawi, from Kenya, working with us and looking at the model of access to oral liquid morphine in Uganda, and then them going back and try to do the same in their countries.

We also have a scholarship program where we fund scholarships in partnership with global partners in care, so that we can build on the workforce, on the palliative care workforce in Africa, and we’ve funded African practitioners to study at Makerere and University of Cape Town and Mildmay, Uganda.

At Cape Town, they do their masters, as well as Makerere, together with Hospice Africa, Uganda, and their institute. They run certificates, diploma, bachelors, postgraduate diploma, and master’s degree, and then at Mildmay, Uganda, there is a postgraduate diploma in pediatric palliative care. We currently have advertised master’s degrees in palliative care for nine candidates from Africa, so that we can develop more capacity.

The other aspect in which we intervene is by running a small grants program. Every year, with funding from the True Colours Trust, we provide small grants to 20 palliative care service providers in Africa. These are competitive small grants where people can have access to medicines, they can train their staff, they can buy equipment, they can extend services to children, and in the rural areas as well, we do that.

And for the small grants particularly, we usually advertise in February and in August. So, end of August, for example, end of August, beginning of September, the next cohort of organizations will be invited for application. So, that’s the range of the services we provide, but we also do research.

Research with our partners, universities in Africa, for example, we’ve done projects with Makerere University, with the University of Cape Town, King’s College London, University of Leeds, University of Birmingham, and we do that in partnership with the implementers across Africa. We’ve also had a research study that is looking, we had a study that looked at an app, a mobile app on patient health work interaction, and that study was mild country. It happened in Uganda, Zimbabwe, Nigeria, and India, and we had expertise from all those countries working together to pilot and improve that app.

So, at any one time, we have several research projects going, and the findings of those studies are also published on our website.