Care and support is one of the crucial pillars of a comprehensive response to HIV, alongside prevention and treatment.
Yet care and support for people with HIV and their carers and families, has long been neglected, particularly in the policy arena.
National and international leaders have simply not kept pace with the interventions delivered by civil society, communities and families around the world.
Care and support is a fundamental part of HelpAge’s HIV work.
We have always recognised the crucial role played by older people in caring for family members living with HIV and orphaned children and we work with our partners to reduce the impact providing care has on their lives.
So it was heartening to hear this week that the importance of getting care and support included was, at long last, also recognised by UNAIDS.
On Tuesday, the UK Consortium on AIDS and International Development organised for UK-based civil society working on HIV to meet Michel Sidibe, Executive Director of UNAIDS.
The meeting focused on the current global response to HIV and UNAIDS role in it, and gave civil society representatives an opportunity to raise any issues with Mr Sidibe.
It was here that we had the chance to highlight how the importance of care and support had been neglected.
In our role as co-chair of the Consortium care and support working group, with Help the Hospices, we raised with Mr Sidibe three key challenges we see in relation to UNAIDS leadership on care and support.
Getting care included in targets and monitoring
The first was on the priority given to the issue within the targets UNAIDS uses to frame the global HIV response.
Of 10 targets agreed in the UN 2011 Political Declaration on HIV, none focuses on care and support, leaving a huge hole in the HIV response.
We next talked about the UNAIDS Unified Budget, Results and Accountability Framework and how the care and support related outputs are monitored.
It is crucial that the targets and commitments made in these types of documents are actually implemented and that we hold our leaders to account on the things they commit to do for people affected by HIV.
Finally we raised the important area of monitoring and data collection.
With woefully inadequate data on care and support, a lack of indicators and survey questions on issues like home based care and palliative care, and the exclusion of older people in data collection and monitoring, we sought reassurance that UNAIDS is taking steps to address the current challenges we face.
Moving forward with UNAIDS
Having heard our concerns Mr Sidibe responded by stating that too little has been done to address the care and support needs of people living with and affected by HIV.
He recognised that leadership has been weak in this area and that this has to change.
As a first step he invited us and our care and support working group colleagues to meet with UNAIDS in Geneva to discuss the challenges in more detail and how we can move the issues forward.
He also suggested we meet with the new UNAIDS Community Mobilisation Advisor who is taking responsibility for care and support.
Being one step ahead of the game we already have that particular meeting in our diaries!
Let’s hope these meetings lead to some real progress and increased leadership on care and support in the HIV response.
What next?
Find out more about the UK Consortium meeting and care and support intervention.
Find out more about the care and support working group.