Caregivers Action Network, UK Consortium on AIDS and International Development Care and Support Initiative and Worldwide Palliative Care Alliance joint World AIDS Day statement 2012

30 November 2012

On Saturday 1 December the World's HIV community will come together to mark World AIDS Day. This year we are focussed on ‘Getting to Zero' in an effort to achieve a generation where no one dies of AIDS, no one newly acquires HIV, and the rights of all people living with or affected by HIV are upheld. While we, as a care and support community, fully endorse these three goals, we remain concerned about the limited attention being given to the care and support needs of those living with and affected by HIV and the lack of recognition of the crucial role of caregivers in the HIV response.

Over recent years the priority being given to comprehensive care and support has reduced. The 2006 commitment to achieving Universal Access positioned care and support as one of three crucial pillars of a comprehensive HIV response, alongside prevention and treatment. The more recent move towards Getting to Zero and the focus on zero AIDS-related deaths, zero discrimination and zero new HIV infections has resulted in care and support dropping off the list of global headlines on HIV issues.

Another setback came with the outcome of the 2011 UN High Level Meeting on HIV and the resultant Political Declaration. The response is being increasingly framed by global targets, but with no such target on care and support we are concerned that care and support is not receiving the attention that it needs While we welcome the inclusion of social protection in the target on integration, we are concerned by the suggestion that this will ensure care and support is adequately addressed. Social protection is crucial in mitigating the impact of HIV but does not provide or replace the comprehensive care and support[1] needed by those living with and affected by HIV and their caregivers.

UNAIDS' launch of the 2012 Global Report on the AIDS Epidemic and accompanying World AIDS Day Report are heavily focussed on the successes achieved in the HIV response over recent years. While these successes are to be applauded, many of them would not have been achievable without community and home based caregivers (CHBC) and care and support organisations, yet care and support is barely mentioned in either report. The UNAIDS World AIDS Day Report completely ignores care and support and makes no reference to the role of caregivers. Social protection is also notable by its absence, despite its supposed position within the targets driving the global HIV response.

The Global Report on the AIDS Epidemic is similarly problematic. This is perhaps not surprising when: 1) only two of the 30 global progress indicators are focussed on care and support; 2) questions on home based care and palliative care have been removed from the NCPI; 3) and some indicators are narrowly focussed on the 15-49 year age group, ignoring the ageing of the epidemic which is bringing more complex care and support needs. The way the epidemic is being monitored is woefully inadequate where care and support is concerned, a fact that must be addressed.

Yet the challenge is bigger than this and fundamentally lies with the lack of leadership on care and support from UNAIDS and its co-sponsors. Allowing care and support to be left out of the headline priorities and targets for the HIV response is leading to the neglect in this area. The lack of recognition of care and support and the crucial role of caregivers influences the way care and support is articulated, discussed and resourced. Many of the country progress reports, compiled by UNAIDS to form the Global Report include examples of care and support interventions, yet these are not included in the Global Report.

Care and support remains fundamental to the HIV response - Getting to zero cannot happen without the care and support of family members, community caregivers and health professionals and their role in enabling access to treatment and prevention services being fully recognised, prioritised and resourced through international and domestic commitment. In Sub-Saharan Africa 90% of care and support is provided by women, including older women, and girls in the home[2] at their own expense and with little, if any, guidance, training, equipment or support. Currently 7 million people are still not on treatment[3] and 42% of the world's countries have no hospice or palliative care services[4]. Something has to change.

This World AIDS Day we call on Michel Sidibe to stand by his recent recognition of the lack of attention being paid to care and support, and the lack of leadership coming from UNAIDS in this area[5] and take action to make change happen. We stand ready to provide any necessary support.


[1] Physical care, psychosocial, socio-economic, legal and human rights and nutrition support
[2] UNAIDS 2004 Report on the Global AIDS Epidemic: the impact of AIDS on people and societies
[4] Lynch, Thomas, Stephen Connor, and David Clark. 2012 Mapping Levels of Palliative Care Development: A Global Update Journal of Pain and Symptom Management
[5] Discussion at a meeting with UK based civil society

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