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CAN's March Newsletter

2013-05-02T11:22:03Z

We are pleased to announce that CAN's March Newsletter is available to read.

CAN's February Newsletter

2013-03-12T15:49:11Z

We are pleased to announce that CAN's February Newsletter is available to read.

CAN attends the UN Social Protection Care and Support Working Group meeting

2013-03-12T15:39:26Z

On the 28 February - 1 March 2013, CAN attended the UN Social Protection Care and Support Working Group meeting in Geneva. The working group made up of representatives of UN agencies, donors, academics and representatives of civil society meets annually and shares experiences and learning and undertakes joint work on social protection and care and support in relation to HIV.

The first day started with discussion around the post 2015 agenda and how social protection and care and support are being addressed. WHO presented its view of the current discussions around universal health coverage stating that UHC is about access for all people to all needed health services of good quality. They also stressed the focus from infants to old age and the definition of UHC as including promotive, preventive, curative, rehabilitative and palliative care, support and services. Limited attention was given to how UHC will be achieved at the community level. There might be some recognition of the role of government appointed, paid community health workers, but it seems less likely that the work being done by communities and primary and secondary caregivers will be adequately recognised or reflected. It will be important to engage with the ongoing UHC discussions to ensure the essential work being done by caregivers is not missed.

Each UN agency at the meeting reported back on its work on social protection, care and support over the last year and their progress in meeting targets in the Unified Budget, Results and Accountability Framework (UBRAF). There has been more progress and emphasis on the social protection agenda, but a number of key issues were raised in terms of care and support:

The continued challenge of addressing elements of care and support being left behind: care and support for orphaned and vulnerable children; home based care; and palliative care
How we can cost care and support at the community level
How do we strengthen the nexus between cash and care to ensure comprehensive care and support is being provided?
The link between care and support and treatment success with the key reasons for people defaulting on treatment highlighted as lack of money and food.

Some of the UN agencies fed back on specific areas of work in relation to care and support:

UNAIDS support to the CAN research: community caregivers: the backbone for accessible care and support
UNICEFs support to research into children’s palliative care needs with ICPCN
WFPs collaboration with the Global Fund on nutrition as part of the treatment, care and support package
WHO’s development of new ART guidelines, which will include a section on care

The afternoon session of the first day was care and support focussed. Rachel Albone from CAN presented the preliminary findings of the Caregivers research (watch this space for more information...). Claire Morris presented on behalf of the UK Consortium on AIDS and International Development on the process for reporting back on the Roadmap on Universal Access to HIV care and support published in 2011. The Worldwide Palliative Care Alliance and the International Children's Palliative Care Network gave highlights of some of their work: the development of the Global Atlas on Palliative Care at the end of life; and ICPCN and UNICEF research to be undertaken in 3 Sub-Saharan countries, to identify the need for palliative care for children.

PEPFAR delivered a presentation around the strength of inclusion of care and support within the new PEPFAR blueprint. It was stressed that while care and support is not clearly included within the headline outcomes,care and support is recognised by PEPFAR as fundamental and is interwoven throughout the strategy.

Some discussion was had on the challenging issue of how to adequately monitor care and support interventions. An update was provided by Roger Drew on behalf of the UK Consortium on AIDS and International Development in relation to the project on piloting and recommending a set of indicators on comprehensive care and support looking at physical, psychological, legal and human rights, economic and social care and the care of carers. UNAIDS then gave an overview of monitoring and indicator processes, highlighting both the work of the UK Consortium and work on nutrition and stigma and discrimination indicators, both of which are relevant to the care and support agenda. Questions were raised about whether enough was being done to strengthen the monitoring of care and support and it was agreed that a sub-group of the working group would provide feedback to UNAIDS on the National Composite Policy Index (NCPI) (a measurement tool for HIV) and its use in monitoring care and support, specifically in relation to the removal of questions on home-based and palliative care.

On the second day of the meeting significant attention was given to social protection and livelihoods work. StopAIDS Now talked about its approach to livelihoods and microfinance for people living with and affected by HIV. The specific challenge of people living with HIV not being viewed as credit worthy by MFIs was highlighted, as was the need for the promotion of HIV sensitive services. A specific StopAIDS Now programme on linking and learning on HIV and livelihoods in Ethiopia was discussed (find more information here http://www.stopaidsnow.org/hiv-and-livelihoods-programme-ethiopia). USAID also presented on its livelihoods approach, including work with orphaned and vulnerable children and their families in Ethiopia.

UNICEF gave a brief overview of some work it will be taking forward on costing social protection, care and support in the global HIV response. Some initial work has been done to look at the package of services to be costed, but there is not unit cost data available in every case. The reliance of programmes on volunteer and unpaid caregivers (and other workers) and the fact that without this the cost of delivery of programmes would be much higher, was noted and will be reflected in the costings.

Through the two days of discussion a number of areas of continued work, and for follow up, on care and support emerged:

Completion of the UK Consortium care and support indicators work
Review of care and support within the NCPI
Monitoring the roadmap to Universal HIV care and support and care and support within the UBRAF
Launch of the Global Atlas on Palliative Care at the End of Life and the CAN research
UNICEF and ICPCN research on paediatric palliative care.

Fire In The Blood: An intricate tale of 'medicine, monopoly and malice'

2013-02-22T12:39:26Z

An intricate tale of 'medicine, monopoly and malice', Fire In The Blood tells the story of how Western pharmaceutical companies and governments aggressively blocked access to low-cost AIDS drugs for the countries of Africa and the global south in the years after 1996 - causing ten million or more unnecessary deaths - and the improbable group of people who decided to fight back.

Shot on four continents and including contributions from global figures such as Bill Clinton, Desmond Tutu and Joseph Stiglitz, Fire In The Blood is the never-before-told true story of the remarkable coalition which came together to stop 'the Crime of the Century' and save million of lives in the process.

As the film makes clear, however, this story is by no means over. With dramatic past victories having given way to serious setbacks engineered far from public view, the real fight for access to life-saving medicine is almost certainly just beginning.

Even today, over 7 million people globally, who are eligable for treatment, still have no access to life-saving ARVs . 72% of children living with HIV who are in need of treatment do not have to medication. Until late last year, no new TB drugs were developed for over 50 years. 80% of the world’s population don’t have access to sufficient pain relief. So why was nearly $900 billion spent on procuring medicines last year and yet under $70 billion on crucial research and development? The current system leaves many without access to the vital medicines they urgently need.

The documentary, which premiered at Sundance and was nominated for the Grand Jury Prize, is being screened across the UK throughout Feburary and March. Don't miss this chance to be one of the first people to see what is certain to be one of the most talked-about films of 2013! View the upcoming screenings and book your tickets.

Interested in Access to Medicines Issues? You can find our more here.

CAN gets a Makeover!

2013-01-31T13:33:23Z

CAN is very excited to start the New Year with the release of it's first re-styled monthly newsletters.

We would love to hear what you think of our makeover. Please share your feedback on our Tiwtter page at @CareActNetwork using #CANnewsletter. Alternatively, you can leave your comments on our Facebook Page.

CAN's previous newsletters can still be accessed via the newsletter archives.

Subscribe to the CAN newsletter.

Scholarships available for ICASA

2013-01-04T15:21:17Z

SCHOLARSHIP APPLICATIONS OPEN ON 13 MARCH 2013.

The 17th International Conference on AIDS and Sexually Transmitted Infections in Africa (ICASA) is one of the most important events in this years calendar. ICASA is the biggest conference in Africa and is expected to bring together more than 10,000 delegates between the 7th and 11th December.

The theme of this years conference - 'Now More Than Ever: Getting to Zero' - will contribute towards overcoming the HIV and TB epidemics that grip the region. Perhaps quite appropriately, this years conference will take place in South Africa, one of the most affected counties with over 5 million people living with HIV and AIDS and the highest Tuberculosis rates in the region.

Professor Robert Soudre, President of the Society For AIDS in Africa and Chair of the 17th ICASA Conferece, urges governments to maintain the international leadership for the HIV response; "The peole of Africa... send the message to the world not to give up the fight againts HIV, Tuberculosis and Malaria just when success has become palpable."

ICASA represents a massive opportunity for all role players to review the current state of infectious diseases research in Africa. Therefore, the organizers of ICASA have created an International scholarship program in order to promote the participation of the maximum number of actors in the response to HIV, AIDS and STIs, particularly persons living in resource-limited countries, PLHIV and young scientists in ICASA 2013.

More than 800 scholarships (in the form of financial aid) are available for citizens of developing countries, NGO workers, members of marginalized communities, PLHIV, persons with disabilities, young scientists and other youth to participate in the 17th ICASA Conference.

The International Scholarship Program is open to anyone. However, priority will be given to those whose participation in the 17th ICASA Conference will enhance their work in their own communities, to those who are able to transfer skills and knowledge acquired at the conference and to those whose abstracts have been selected for presentation at the conference.

Full and partial scholarships are available. Find out more here.

The number of international scholarships available is limited and the submission of Scholarship Applications will close on the 13th June 2013.

A greater commitment needed on care and support

2012-12-06T14:40:33Z

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

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.

Download the statement.

[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

[3] http://www.who.int/mediacentre/factsheets/fs360/en/index.html

[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 http://aidsconsortium.org.uk/michel-sidibe-meets-with-uk-civil-society/http://www.helpage.org/blogs/rachel-albone-667/promising-signs-from-unaids-to-include-hiv-care-and-support-486/http://www.ehospice.com/ArticlesList/UNAIDSExecutiveDirectorMichelSidiberecognisesleadershipcouldbemuchstrongeronHIVcareandsupport/tabid/3291/ArticleId/1729/language/en-GB/View.aspx

Viewing AIDS as a killer diease increases stigma

2012-07-25T20:57:31Z

Bwire Edgar, 27 year old caregiver from Uganda shares his perspectives on HIV.

"AIDS should not be considered a killer disease. This assumption is increasing stigma in people. Something that kills is what tackles you today and you die today. People live with AIDS for close to 20 years. How many negative people die in that period? People with HIV are just carriers. After all, we shall all die regardless of our HIV status."