On April 29th, the UN hosted a hearing in New York as part of the preparatory process for the UN General Assembly high-level meeting on universal health coverage on 23 September 2019.
From the palliative care community, the WHPCA, ICPCN, APCA and KEHPCA were represented – bringing with them prepared statements on why Universal Health Coverage should not neglect those with the highest health needs, specifically those needing palliative care services. These statements are cited below:
Session 1A: UHC as a driver for inclusive development and prosperity
Statement for Justin Baker - on Behalf of ICPCN and our over 2,000 members from 127 countries.
Palliative care is an essential component of Universal Health Coverage and must be considered in the role out and development of UHC globally. UHC aims to deliver on the right to health as well as the broader human rights agenda. Children with life-limiting and life-threatening conditions have the right to palliative care and pain control, yet of the more than 21 million children globally needing palliative care, it is estimated that only between 5% have access to such care, and where palliative care is available it is often not part of primary health care.
Take for example, Dheo, a young boy with HIV in Indonesia, he is struggling with terrible symptoms, particularly that of breathlessness. He is one of the lucky ones as the team from Rachel House Children’s Hospice are able to support and care for him at home, getting advice on his care from experts from around the world.
However, for every boy like Dheo who is receiving palliative care there are thousands of others who are not, who are suffering needlessly. Whilst they have a right to health, and access to pain and symptom management they are not receiving it - they are being left behind.
The rights of children must be taken into account, we must relieve the unnecessary suffering of the 20 million children globally without access to pain and symptom management. Care must be provide, across the continuum of care, including as part of primary health care for children. The time to act is now thus UHC must consider their needs, ensuring that all children have access to appropriate, essential care and medicines, through a publicly financed UHC package.
Session 1B: UHC as a driver for inclusive development and prosperity
Statement for Ebtesam Ahmed - speaking on behalf of IAHPC
My name is Dr. Ebtesam Ahmed. I am a Clinical Professor at St. John's University College of Pharmacy, where I teach pain management, palliative care, ethics, and end of life care. I also serve on the IAHPC. IAHPC thanks the Chair and requests member states to ensure that “palliative care” is included in the spectrum of UHC as an essential service that fulfils the human rights to health and to be free from cruel and inhuman treatment.
We request governments to ensure that essential palliative care medicines on the WHO Model List be made available as they provide substantial therapeutic benefits for many patients. Morphine, an essential medicine for pain management costs almost nothing, and in some countries as little as three cents a dose, yet policy and other barriers to manufacture, distribution, and prescription prevent it from reaching millions of people around the world, leaving them to live and far too often die in agony.
This is not a natural disaster like an earthquake, it is a result of deliberate, often well intentioned, but short sighted and unbalanced drug policies that neglect to prioritise the wellbeing of patients.
Governments that integrate palliative care into their healthcare systems are more likely to achieve the goals and targets of Agenda 2030. They can reduce extreme poverty, promote gender equality, support education and decent employment, and improve access to essential medicines.
Session two: Leave No One Behind – UHC as a commitment to equity
Statement for David Musyoki - Speaking on behalf of WHPCA, KEHPCA, ICPCN, and APCA
Two weeks ago I met a man called Joseph in Uganda. He has rectal cancer. Because he couldn’t access a colostomy bag from his local health centre, he was taping a plastic bag to himself. This did not always work causing him extreme anxiety and embarrassment. Thankfully, palliative care workers at Hospice Africa Uganda have now provided what he needs so can live his life with dignity.
But most people like Joseph do not get the care they need. Palliative care is a crucial part of a strong primary health care system for people throughout their lives. It is cost effective and supports people with the highest health needs. As a Kenyan palliative care nurse I am pleased to bring 3 asks to this hearing:
Do not leave people like Joseph behind.
Session Three: Multi-sectoral and multi-stakeholder actions and investments for UHC
Statement for Stephen Connor - on Behalf of WHPCA and our 352 members in 100 countries
How many people in this room find it difficult to think and talk about people who need palliative care? I suspect many and this is partly why 90% of the people worldwide who need it don’t get palliative care. People with palliative care needs are often not included in health system planning, implementation and budgets creating avoidable suffering for many of the world’s most vulnerable. They are also particularly susceptible to out-of-pocket impoverishing healthcare costs. Care duties fall on family and community members, mostly women and girls, without support, medicines or equipment.
At the same time, unnecessary and unwanted hospitalisations cost the health system money. Not having palliative care as part of a strong, primary health care system is a lose/lose/lose situation for the person affected, families and community carers and the health system.
Multi-sectoral action is needed. The academics have measured the cost of the essential palliative care package and communities are actively delivering care. But the palliative care needs of over 61 million people including our own families and ourselves will not be addressed without increased commitments to public financing for UHC.
As Lucy Watts, a palliative care patient and leader in the UK, says, “Just because there is no cure, does not mean you can’t give good care.”
We know it can be difficult to talk about but we must be bold and increase public financing and financial protection so that health systems support people throughout their lives, from birth to death.