Claire Morris (Worldwide Palliative Care Alliance) and Rachel Albone (Help Age international), co-chairs of the UK consortium care and support working group attended to raise the issue of UNAIDS leadership on care and support including palliative care.
Ms Albone presented the following intervention to Michel Sidibe, speaking on behalf of the UK Consortium AIDS and International Development care and support working group:
“We would like to share with you our thoughts on how care and support is being addressed in the HIV response and to hear your views, particularly on UNAIDS leadership in this area.
Firstly as I’m sure you agree, care and support is fundamental to the HIV response – Getting to zero cannot happen without the care and support of family members, community carers and health professionals and their role in enabling access to treatment and prevention services.
In Sub-Saharan Africa 90% of care and support is provided by women and girls in the home with little, if any, guidance, training, equipment or support. Currently 7 million people are still not on treatment and 42% of the world’s countries have no hospice or palliative care services.
We have three areas of concern we would like to raise. The first is around the priority being given to care and support. With no global target on care and support within the 2011 Political Declaration we are concerned about how the response is increasingly being framed by the targets. Social protection has been added to the target on integration but broader care and support is not referenced. Given the current global targets and the attention they are receiving, where and how do you see care and support being framed and implemented?
And how do you ensure UNAIDS gives a clear message that care and support is central to the HIV response? In the Unified Budget Results and Accountability Framework (UBRAF) which shapes the work of UN agencies on HIV, there are a few outputs explicitly focussed on care and support. UNAIDS is not directly responsible for their implementation but could you explain how the UNAIDS secretariat works, and will work, to ensure that the care and support outputs are fulfilled? Who in UNAIDS will have the responsibility for the care and support outputs in the UBRAF?
Our final question is on monitoring. A core function of UNAIDS is around the monitoring and evaluation of the HIV response and yet data around care and support is woefully inadequate. The 2010-11 UNGASS indicator review process resulted in a recommendation on the need for pilot testing of care and support indicators. Can you tell us what UNAIDS is doing to take this recommendation forward? In the most recent round of country progress reporting, questions on home based care and palliative care were removed from the National Composite Policy Index. Indicators also focussed on people up to the age of 49 ignoring the fact that the epidemic is ageing bringing more complex care and support needs. Given these moves, can you tell us what UNAIDS is doing to monitor care and support efforts, an issue recognised as needing more attention.”
Michel Sidibe responded to the intervention with an invitation to Ms Albone to come to the UNAIDS office to debrief staff on the issue of care and support. He recognised the vital importance of care and support and acknowledged that leadership on this issue could be much stronger.
He noted that UNAIDS had recruited a new staff member, David Chipanta, to focus on this area. Care and support advocates will be meeting with David Chipanta on Wednesday 14 November in London to discuss how more civil society can support UNAIDS to show greater leadership and focus on HIV care and support, including palliative care.
View photographs and read the papers from the meeting on the UK AIDS consortium website.