Excellence and Originality from Necessity: Palliative Care in Africa. Dr Emmanuel Luyirika Executive Director, African Palliative Care Association

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Excellence and Originality from Necessity: Palliative Care in Africa Dr Emmanuel Luyirika Executive Director, African Palliative Care Association

Summary of the presentation 1. Introduction 2. Background and statistics 3. Developments in Africa-key models 4. Results 5. Conclusion 6. Recommendations

Introduction The African Palliative Care Association is a membership pan African association (with >3200 individual members and >1800 institutional members) working with CSOs, NGOs, FBOs, regional& global agencies, ministries of health whose objectives are: Create awareness about palliative care Strengthen health systems by integration of palliative care Develop research evidence

Background Africa has a population of >1 billion in 54 countries Over 22 million Africans have HIV Over 800,000 new cancer cases in addition to other conditions for which palliative care is needed. In some African countries, almost 40% of all healthcare is provided by faith-based organisations with disproportionately small funding Less than 15% of all patients who need palliative care in Africa even in countries with well documented palliative care models In 2011 patients who needed PC at end of life globally was 20.4 million and AFRO region accounted for 9% of this figure. (The only two entities that have reached this population? Church and Coca Cola. Any action for palliative care using these two?)

Frameworks for palliative care developments in Africa The 2002 WHO Palliative Care definition The WHO PC Public Health approach (Policy, Medicines, Education, Implementation) National associations and hospices The 2011 UNGASS Political Declaration on NCDs The Johannesburg Declaration of 2013 of ministers of Health Implementation of the 2014 WHA Palliative Care Resolution, The 2012 (AU) African Common Position on access to pain medicines, The 2016 Kampala Declaration of Ministers of Health All these have provided opportunity for growth of palliative care Training, Research and Practice

African Union Partnerships for palliative care in Africa Historically the palliative care providers in Africa have been: NGOs Churches and church-leaning organisations Other CSOs Governments (have come late on the scene.) WHO

APCA s role Techinical assistance to countries on oral morphine reconstitution in Uganda, Malawi, Swaziland, Botswana, Zimbabawe, Kenya, Nigeria, Rwanda, Malawi, etc. Palliative care policy dev in 12 countries, 8-10 small grants to PC providers every 6 months funded by True Colours Trust, Technical Assistance for PC in health systems esp education, research and data platforms PC advocacy in Eastern and Southern Africa Currently supporting PC policy in four countries from the 2016 ministers session Gambia, Angola, Togo, Liberia

APC As role Co-hosting the Triennial African ministers of health session on PC, the Triennial African PC Conference, Supporting countries to meet the nine roles in the 2014 WHA PC Resolution Facilitating South-to-South collaborations using the existing models

The patient experience in Africa The palliative care patient experience in Africa is still very less than desirable and complicated by: Lack of trained personnel Limited financial, infrastructure and trained PC human resources Long distances to the service Lack of access to oral morphine Legalistic approaches to controlled medicines by some health workers and control authorities Little or no financing framework for palliative care integrated in all other health financing mechanisms

Models The South African HPCA supporting with both government and Private Sector to avail palliative care through hospices Public-Private partnership model between Uganda MoH and for oral morphine reconstitution to create access to oral morphine and use of Nurse prescribers The KEHPCA Model in Kenyaof supporting hospices within the government hospitals to share resources The Botswana model of including palliative care in National Policy and government funding CSOs who offer palliative care Malawi with clear annual reporting mechanisms about the need and coverage by largely nurses and clinical officers The APCA Small grants approach for NGOs, FBOs, hospices and government palliative care units Island Hospice model in Zimbabwe

APCA Atlas of Palliative Care in 1. Health financing 2. Medicines 3. Education 4. Services - Homebased - Paediatric - Hospices 5. Policy 6. Other Africa Acknowledgements: University of Navarra, Mt Sinai, IAHPC, APCA

Participant countries in the study leading to the APCA PC Atlas 2017

Results The 2017 APCA PC Atlas, at least 38 countries have some sort of PC service using different models. Uganda had 229 such services, South Africa 160 and Kenya 70 but only 16 countries have paediatric PC care services. Swaziland has 10.88 hospice services per million of population, Uganda 5.87, Gambia 5.02 while South Africa 2.91 per million of population. Only 28 countries have home-based PC services with South Africa topping with 109 home-based services, Tanzania 26, Zimbabwe with 25, and Uganda with 13 and Kenya 12. Number of patients in PC services per year, South Africa stood at 40,000, Zimbabwe at 5000, Zambia 4000, Botswana at 3210 and Kenya at 3000. Ref: 2017 APCA African Palliative Care Atlas

Hospital based PC services 25 countries have some sort of hospital based PC services with highest coverage being: Swaziland at 100% of all hospitals, Gambia 83%, Uganda 20% Kenya 14% and Senegal, Tanzania and Botswana at 10%.

Financing: Health expenditure per capita of top ten African countries - Equatorial Guinea $1163.42 - South Africa $1148.37 - Algeria $932.108 - Mauritius $896.16 - Botswana $870.84 - Namibia $869.30 - Tunisia $785.32 - Gabon $599.00 - Egypt $594.00 - Swaziland $587.00

Financing: Expenditure per capita: East Africa - Kenya $168.98 - Tanzania $137.49 - Uganda $132.59 - Rwanda $125.10 - South Sudan $72.82 - Burundi $58.02

National Palliative Care Plans

Policy: Existence of a stand alone national palliative care plan /program /policy - South Africa - Rwanda - Swaziland - Mozambique - Zimbabwe - Botswana - Malawi - Tanzania - Ethiopia - Libya - Guinea - Uganda

Policy: Palliative care in national cancer or HIV plan or programme Morocco Senegal Gambia Cote D Ivore Sierra Leone Ghana Burkina Faso Mali Nigeria Algeria Tunisia Egypt Sudan Central African Republic Angola Zambia Kenya Mauritius Eritrea

Policy: National Palliative Care Clinical guidelines Gambia Guinea Cote D Ivore Libya South Africa Botswana Zimbabwe Malawi Rwanda Kenya Ethiopia Swaziland Zambia

Policy: Palliative Care Desk at the Ministry of Heath South Africa Lesotho Swaziland Zambia Malawi Rwanda Mauritius Senegal Guinea Cote D Ivore Libya Kenya Ethiopia Uganda

Palliative Care Education: Existence of specialised PC educational program for physicians 1. South Africa 2. Kenya 3. Uganda 4. Egypt 5. Ghana

Palliative Care Education: Medical and Nursing Schools with obligatory PC courses 1. South Africa 2. Kenya 3. Malawi 4. Swaziland 5. Botswana 6. Tanzania 7. Uganda 8. Guinea 9. Gambia

Number of Palliative Care Hospices or Services: Top 10 African countries 1. Uganda 229 2. South Africa 160 3. Kenya 70 4. Nigeria 17 5. Tanzania 16 6. Malawi 14 7. Swaziland 14 8. Zambia 14 9. Zimbabwe 11 10. Egypt 10

Palliative Care hospices/services per million inhabitants: Top 10 African countries Swaziland 11 Uganda 5.87 Gambia 5.02 South Africa 2.91 Botswana 1.77 Mauritius 1.58 Kenya 1.52 Equatorial Guinea 1.18 Gabon 1.16 Zambia 0.86

Number of Paediatric Palliative Care Services: Top 10 African countries South Africa 20 Nigeria 10 Malawi 7 Zambia 4 Swaziland 3 Kenya 2 Mauritania 2 Tanzania 2 Uganda 2 Zimbabwe 2

Home-based Palliative Care Services offered by hospices: Top 10 African countries South Africa 109 Tanzania 26 Zimbabwe 25 Uganda 13 Kenya 12 Nigeria 10 Cote D Ivore 7 Rwanda 6 Morocco 5 Sierra Leone 4

Palliative Care: Top countries by number of PC patients in care for the last year South Africa 40,000 Zimbabwe 5,000 Zambia 4,000 Botswana 3,200 Kenya 3,000 Egypt 1,600 Sierra Leone 1,350 Gambia 1,320 Ethiopia 1,000 Malawi 970

Medicines: Availability of immediate release oral morphine 1. Uganda 2. South Africa 3. Botswana 4. Swaziland 5. Kenya 6. Namibia 7. Zimbabwe 8. Tanzania 9. Ethiopia 10. Sudan 11. Rwanda

Medicines: Non-physician prescription of oral morphine 1. Uganda 2. Zimbabwe 3. Tanzania 4. Malawi 5. Zambia 6. Tanzania 7. Ethiopia

Opioid consumption in mg per capita per year: Top African countries ( >1mg/capita/year 1. South Africa 2. Swaziland 3. Namibia 4. Kenya 5. Tunisia 6. Libya 7. Ghana 8. Ethiopia

Palliative Care Specialisation and integration in undergraduate training

National Palliative Care Associations

Inequity in Access to Cancer Care (Example of radiotherapy as a treatment and palliative care modality) 30 African countries without radiotherapy. Many others have insufficient capacity to meet the need. Over 700 radiotherapy machines needed Source: GLOBOCAN 2012, IAEA 2016 35

Key challenges Financing: Inadequate or total lack of palliative care financing. No UHC schemes for palliative care except Botswana, Rwanda, Medicines: Barriers to accessing controlled medicines and Radiotherapy Health workers: Few palliative care trained health workers Policy: Lack of palliative care policies in most of the countries Data frameworks: Many countries do not collect PC data

Conclusion There are palliative care development initiatives in a number of African countries but are poorly financed Africa can do better given the global and regional frameworks already in place Universal Health Care schemes covering palliative care are lacking on the continent Health worker development for palliative care still needed Palliative care Policy and data frameworks still rudimentary in many African countries.

Way forward APCA is engaging governments to implement the WHA PC resolution on palliative care APCA is also engaging faith-based entities to include PC in health worker education and in hospital services. Engagement of health care funders and financiers to include palliative care For CSOs to work with governments to implement the resolutions and best practices Faith-based initiatives should include palliative care at all levels of interventions and APCA is happy to offer technical support. Need for a funded PC marshal plan in the LMICS as part of the UHC schemes

Thanks The Pontifical Academy for Life All our partners, IAHPC, University of Navarrra, Mount Sinai Team, WHO African Ministries of Health All palliative care funders

References 1. http://www.who.int/mediacentre/events/governance/wha/en/ for the WHA Resolutions 2. Rhee JY, Luyirika E, Powell RA, Garralda E, Pons JJ, de Lima L, Centeno C. APCA Atlas of Palliative Care in Africa. IAHPC Press, 2017 3. APCA Report 2016/2017; WWW.AFRICANPALLIATIVECARE.ORG