Care and Support

Allan Ragi, CEO of KANCO, at a Care and Support Conference in 2010

Introduction

At the UN High Level Meeting on AIDS held in 2006, the international community set Universal Access as the framework for the response to HIV. As part of their commitment, countries promises to set national level targets to work towards the goal of “universal access to comprehensive prevention programmes, treatment care and support”. This positioned care and support as one of the three critical pillars of a comprehensive HIV response.

Years on, care and support remains just as critical but has unfortunately not received the attention its inclusion in the universal access target promised. Despite being the third pillar, it is scarcely accounted for in formal, funded national AIDS responses or policy-making and is not listed as a priority for many international institutions, donors or regional bodies. Therefore the work of clinicians and particularly community and family carers and home-based care organisations, has remained largely invisible and inadequately supported.

Objectives

The Care and Support Working Group exists to:

Provide a clear and comprehensive definition of HIV care and support
Scope the breadth of issues captured within this definition of HIV care and support
Raise the profile of care and support within the Universal Access framework
Ensure care and support is not left out of the advocacy agenda
Present consensus driven policy and practice recommendations on care and support to multilateral institutions, donors, national governments and civil society.

Publications

- Fact Sheet: Palliative Care and HIV (2013)
- Past Due: Remuneration and Social Protection for Caregivers in the Context of HIV and AIDS (2012)
- Care and Support: The Forgotten Pillar of the HIV Response (2011)
- HIV Care and Support: A Roadmap to Universal Access to 2015 (2011)
- Report of the Care and Support Conference 2010 (2010)
- Consensus Statement from International Care and Support Conference (2010)
- 3 Country Case Studies on Care and Support (2010)
- The Essential Role of HIV Care and Support in the ART Era (2010)
- How is Care and Support Being Addressed in the Global AIDS Response? (2010)
- Standards-Based Assessment of UNGASS HIV/AIDS Care and Support Indicators (2010)
- What do we Really Mean by Care and Support? (2008)

Current Work

UNAIDS Engagement:
Briefing paper

On the 28 February and 1 March the co-chairs of the Care and Support Working Group attended the UN Social Protection Care and Support Working Group meeting in Geneva.

The co-chairs presented the Consortium’s work on pilot testing care and support indicators, the areas for discussion at the care and support meeting with Deputy Executive Director Dr Luiz Loures and plans to monitor implementation of the roadmap to universal access to care and support.

On March 11^th, Chairs of the UK Consortium Care and Support Working Group met with senior UNAIDS staff, including Dr Luiz Loures, to discuss progress against universal access to HIV care and support. This opportunity arose from the November 2012 meeting with Michel Sidibe (link to website) convened by the UK Consortium.

The WG highlighted four main areas of concern (link to briefing on C&S WG page) – positioning and political leadership, care and support in the UBRAF, monitoring and evaluation and neglected issues including caregiver support, psychosocial support, and physical care aspects of care and support. The meeting was constructive with UNAIDS committing to writing a programme communication on care and support, increasing focus on care and support in Global Reports and Epidemic Updates, and reviewing UBRAF data. The care and support working group agreed to send UNAIDS evidence of the role of care and support in ensuring treatment success and case studies of community systems in action – where community caregivers support treatment adherence. Follow up activities are currently underway.

Care and Support Indicators: Work on identifying quality indicators for care and support is continuing, with consultants in Zambia and South Africa identifying indicators currently being used in-country. The consultants work culminated in a presentation of the identified indicators to an Indicator Review Panel in February 2012. Phase II of this project will involve piloting the identified indicators to assess their feasibility and usefulness.

Remuneration of Caregivers: In sub-Saharan Africa, an estimated 90% of care for people living with HIV and AIDS is done in the home by family or community-based caregivers. Caregivers are a vital workforce in the response to AIDS – but they are an unpaid one. Is this right? Or should we now be looking at remunerating caregivers to ensure a future sustainable workforce that does not leave carers worse off? In March 2012 the Working Group released a policy briefing to discuss this topic. Past Due: Remuneration and Social Protection for Caregivers in the Context of HIV and AIDS

In early 2011 we published two documents. The first, Care and Support: The Forgotten Pillar of the HIV Response highlights where care and support is provided and looks at the link between care and support and the other elements of the HIV response. The second, HIV Care and Support: A Roadmap to Universal Access to 2015 begins with the UNAIDS definition of comprehensive care and support and is followed by a set of principles. It outlines targets for technical agencies, donors, national governments and civil society.

In November 2010, the Care and Support Working Group and the broader UK Consortium on AIDS and International Development hosted an international conference on HIV Care and Support, to highlight why HIV community care and support initiatives are critical to achieving Universal Access for people living with HIV.

In February 2010 the working group was invited by UNAIDS to be the civil society lead of the care and support track of the global UNGASS indicator review process in collaboration with UNICEF, to be completed October 2010.

Past Work (2008 to 2009)

In June 2008 our published paper What do we really mean by HIV care and Support? Towards a comprehensive definition was launched with the All Party Parliamentary Group on AIDS at the Houses of Parliament. In August 2008 it was also launched at the International AIDS Conference in Mexico.
A technical meeting was held with the DFID AIDS and Reproductive Health Team to share the paper and lobby them to adopt our comprehensive definition of care and support.
In 2009 our paper was shared with Roger Drew, a consultant who represents DFID on the UNAIDS Monitoring and Evaluation Reference Group. A joint project was agreed to use the Working Group paper as the basis for reviewing the care and support indicators and identifying a core set for use globally. In Autumn 2009 the indicators were presented to UNAIDS with the help of DFID funding, and another consultant Andrew Butler.
Working alongside DFID funded consultants Roger Drew and Andrew Butler, we reviewed existing care and support indicators. In May 2009 Roger Drew presented the first part of this work to the UNAIDS Indicators Technical Working Group of the MERG in Geneva. The review suggested that a body perceived as independent should review existing indicators and make suggestions for future monitoring. The MERG were enthusiastic about this being a new model for indicator development and selection.
The Group’s care and support definition was inputted into the Review of the European Commission (EC) Programme for Action on HIV, TB and Malaria. The group were asked to present the civil society submission on care and support at the Review meeting in Brussels, and as a result the Group’s definition was incorporated into the final review document.
The paper was distributed at the 2009 UN Commission on the Status of Women, a Caregivers Action Caucus with carers and other international non-governmental organisations (INGOs) was formed, and member states were successfully lobbied to ensure that the Group’s key asks were included in the Agreed Conclusions.