The end of the XIX International AIDS Conference has arrived. It has been a rich and diverse conference but from the perspective of palliative care, we have heard very little. We know we have an ageing population of people living with HIV with complex care needs and increased incidence of co-morbidities. We know we have an increased need for care and support services to support ART adherence and retention. We know that 10 million people in need of ART are not accessing it. All of this contributes to the enormous need for palliative care and yet it is not being talked about.
The myths we have heard many times before have been ubiquitous again at this conference - ‘People are on ART now so care and support isn’t needed’, ‘there are no longer bedridden people living with HIV’, ‘palliative care is only about people who are dying’. Yet the space within the programme for experts, academics and practitioners working on palliative care to rectify and correct these misconceptions has been largely absent.
However, there have been some glimpses of light on this issue throughout the meeting:
Dr Zipporah Ali accepted the Red Ribbon award in the treatment, care and support category on Wednesday on behalf of the Kenyan Hospices Palliative Care Association. This was a huge achievement for Zippy and the organization which is a national organisation for services providing quality comprehensive care from the point of diagnosis of people living with life-limiting illness in Kenya in community and health facility settings.
The Caregiver’s Zone in the Global Village held a packed programme of sessions across the week with sessions from Eunice Garanganga on the need for bereavement support for family members in Zimbabwe. Kim Green from FHI 360 and Olivia Dix from the Diana, Princess Wales Memorial Fund did an enlightening presentation highlighting the data around how palliative care support treatment adherence and retention.
It was good to see the issue of care and support and palliative care for key populations being raised. Richard Burzynski from UNAIDS talked about the recognition of the need palliative care key populations and particularly noted the need for pain treatment for IDUs in the Caregivers zone. There was also a flow of traffic to the OSI International Palliative Care Initiative booth requesting training and support to ensure MSM get quality care globally including from Nigeria, the USA and the Netherlands.
At the Human Rights Networking Zone in the Global Village, Open Society Foundations organized a session on pain relief as a human right where representatives from Human Rights Watch, Global Access to Pain Relief Initiative (UICC), Worldwide Palliative Care Alliance and International Children’s Palliative Care Network making the case that pain treatment is a fundamental aspect of care for adults and children living with HIV. Yet, there are 3.6 million HIV and cancer deaths every year around the world where pain is untreated.
The Foundation for Hospices in Sub-Saharan Africa organized a reception in partnership with others to launch the Integration of palliative care toolkit into HIV services. A new and vital tool by Diana, Princess of Wales, Memorial Fund and FHI360 which recognizes that integration is absolutely key and is neither costly nor difficult. We know this because organizations such as HOSPAZ members and Island Hospice in Zimbabwe are already doing it and doing it well.
So, a final few thoughts from palliative care colleagues at the conference:
Rose Gahire from the Palliative Care Association of Rwanda: “I am so disappointed that there was so little discussion on the integration of palliative care into HIV services at the conference. In Rwanda, there is a huge focus on treatment scale up but there is no systematic follow up to ensure the continuum of care. This needs to be addressed."
Olivia Dix from The Diana, Princess of Wales Memorial Fund, says “There is a real disconnect that people are talking about community and yet the minute community members leave the stage the conversations are all about the technology, the clinical and scientific issues. On the one hand they are saying we can’t do this without the communities but on the other hand the discussion about what this means is largely absent”.
Joan Marston, CEO of the International Children’s Palliative Care Network in South Africa “Palliative care strengthens treatment adherence for children and improves quality of life. Research has shown that children with HIV living with pain are five times more likely to die than children with HIV without pain. 98% of the hospice and palliative care for children in South Africa is driven by HIV. Why are people not talking more about this issue?”
So there is much work to do and we look forward to the support of the IAS and others to ensure a stronger presence on palliative care in the future. The need for palliative care remains and we must ensure that people living with HIV and other life-limiting conditions access the best quality care possible, throughout the life course.