NATIONAL ASSOCIATION OF PEOPLE LIVING WITH HIV/AIDS
Building PLHIV Organisations and Networks in PNG and Timor-Leste
John Rule, Deputy Director, NAPWA
National Association of People Living with HIV/AIDS
NAPWA regional work 2005 -2008
Working in PNG (Partner Organisation – IGAT Hope)Working in Timor-Leste (Partner Organisation –
Timor Aid)Working with the Asian Pacific Network of Positive
People – based in BangkokFunded by AusAID from June 2005 for three years.
$200,000 per year
National Association of People Living with HIV/AIDS
Hope ?
PNG - Igat Hope – translation - I have, we have, there is hope
Timor Leste - Esperanca – translation – hope.
APN+ - workshops program - developing negotiating skills in health care setting, developing confidence in engaging with government systems and non-government organisations, developing advocacy skills, developing submission writing skills, developing resilience and developing hope…
National Association of People Living with HIV/AIDS
Pedagogy ?
Draws attention to knowledge exchange
Extends thinking beyond the (sometime limiting) language of training, capacity building and community development
Directs attention to cultural contexts of practice
It’s relational – I am in a knowledge exchange relationship with people I have been working with, and those people will continue to live in a knowledge exchange relationship with each other - those people will be developing ‘hope’ with each other – they are also involved in knowledge exchange – with each other.
National Association of People Living with HIV/AIDS
Project Aims
Building PLHIV community capacity and knowledge
Strengthen the participation by partner organisations in their country responses
Develop and sustain visibility of HIV-positive people for delivering representation within their own local responses
National Association of People Living with HIV/AIDS
PNG – some basics
Numbers of people with HIV - 16,000 or 60,000 ? (pop. 6 million)
18% who test for HIV at Port Moresby General casualty test positive (2005)
New infections mostly women
In 2005 WHO had plans for 7,000 treating by end of that year, in Jan 2005 there were 350 on treatment in Port Moresby and some starting in some provinces, numbers not clear in 2008, but no-where near targets. I suspect only just over 1000.
National Association of People Living with HIV/AIDS
PNG – Organisational capacity building for a newly established group of critical importance
Provide Governance Training
• Consultant – Tim Leach – also John Rule, John Trigg, Suzanne lau-Gooey, Peter Canavan, Andrew Timmins, Max Niggle, Susan Paxton, John Rock, Gabe McCarthy, and many others - links with PATSIN also - NAPWA staff Jo Watson, Brent Beadle…
• Development of Governance kit – outlining board roles, responsibilities and aims
• Distribution of Governance kit to donors and partners
• ‘Modelling’ of organisational roles and responsibilities
National Association of People Living with HIV/AIDS
National Association of People Living with HIV/AIDS
PNG – Organisational capacity building for a newly established group of critical importance
Supported delegates of Igat Hope’s Board for ASHM presentation and conference activities. Supported Igat Hope members to attend NAPWA Conference in Adelaide. For Igat Hope staff to come on study tours.
Assisted in running of first AGM 8th Sept 2005
and two day governance training workshops following AGM. Also in 2006 and 2007.
National Association of People Living with HIV/AIDS
PNG – Organisational capacity building for a newly established group of critical importance
Development of PLHIV networks beyond Port Moresby
• Main support that NAPWA has offered was the establishment of a base in Port Moresby
• Setting up of office – systems, capital etc…
• Recruitment of co-ordinator
• Performance appraisal of co-ordinator and ongoing support as more staff are employed.
National Association of People Living with HIV/AIDS
PNG – Organisational capacity building for a newly established group of critical importance
There are several positive organisation that have emerged in PNG – Tru Warriors in Mount Hagen, Good Samaritans in Madang, Igat Hope Milne Bay, a positive group in Lae and Friends Ministry in PNG.
Some have close relationships with Igat Hope others do not want to be told what to do by Igat Hope.
There will be a National Conference organised by Igat Hope at the end ’08.
National Association of People Living with HIV/AIDS
Timor –Leste some basics
400km from Darwin,
925,000 population, 95% Catholic, 65% younger than 35 yrs
total health budget less than price of a few of expensive Paddington terraces
average wage less than US$3 per day…..
history of violent oppression…every person alive has had at least three immediate family members killed…
National Association of People Living with HIV/AIDS
Lack of data.
HIV prevalence estimated as ‘low’ but questionable surveillance data available (2000 – none? 2002 – 6, 2004 – 26, 2008 – 72 ? )
Information on availability of treatments is ‘cloudy’ but
recently have been told 10 ? (known of through general hospital or Biro Petie Clinic)
Everyone acknowledges one of the main problems is lack of data as well as stigma, discrimination and visibility of PLHIV.
National Association of People Living with HIV/AIDS
East Timor – fostering positive responses and peer support to prevent an epidemic and provide
support for isolated plwha
The project will stimulate a process of plwha group conception and “safe” spaces
• Education of Timor Aid staff and others in Dili about this concept
• “The preliminary nature of NAPWA’s involvement in work in East Timor requires that NAPWA remain flexible in its program development”.
National Association of People Living with HIV/AIDS
East Timor – fostering positive responses and peer support to prevent an epidemic and provide
support for isolated PLHIV
There have been meetings of positive people convened by Timor Aid
Doctors from a private clinic and from the general hospital have attended these meetings and provided information and support
The number of people participating in the monthly meetings is 13 adults and 7 children
Others have attended the meetings in support arrangements for the positive people –politicians, Ministry of Health representatives, CWS, SSPS and Caritas.
National Association of People Living with HIV/AIDS
East Timor – fostering positive responses and peer support to prevent an epidemic and provide
support for isolated PLHIV
Needs assessment: the project aims to begin investigation of priority needs,
as named by PLHIV or their carers
• Tracing what happens when people are diagnosed
• Transport back from the districts when people go away after being diagnosed
• “These people ran away from Dili before receiving any further medication or treatment”
• Trust-building and information about HIV
National Association of People Living with HIV/AIDS
East Timor – fostering positive responses and peer support to prevent an epidemic and provide
support for isolated plwha
• Topics identified by Timor Aid have been confidentiality and disclosure, treatment information and nutrition.
• Project meeting in Darwin 2007 – resources gathered there are being ‘adapted’ by Timor Aid to produce a rudimentary printed resource – in Tetum.
• May 2008 –NAPWA visit and needs assessment through discussion with Esperanca led to a brokered meeting between clinicians, NGO’S, Ministry of Health and Esperanca.
National Association of People Living with HIV/AIDS
Some questions PNG and Timor?
Are people being asked to commit to long term ARV treatment with certainty – the challenge of adherence?
How is this affected by – supply?
How is this affected by – access?
National Association of People Living with HIV/AIDS
Peer support to maintain optimal treatment and adherence
People taking ARV’s talking about that and then providing support for others to engage
Providing motivations for others to access and adhere to treatments
Can particular ‘groups’, ‘communities’ be motivated differently ?
The role of day care centres and positive spacesMentoring in engagement with health care systems
National Association of People Living with HIV/AIDS
How PLHIV peers work ?
Act as a liaison between the provider and clientServe as a ‘system navigator’Translate medical information Provide linkages to other support mechanismsRelay information from clients to providersDeliver prevention messagesSupport ‘medication supervision’Be role models
National Association of People Living with HIV/AIDS
Defining peers
Peers may often be viewed with more credibility than ‘the professional’
Why ? Because the peer has most likely faced similar life constraints – particularly true in contexts where the Doctor is the ‘big man’
Commonality might be – around language, culture, social place, social experience meaning that the peer is a very useful point of intervention
Trained peer workers as para-professionals
National Association of People Living with HIV/AIDS
Role of the peer worker in support adherence
Can help to dispel any myths surrounding treatment
Can become a credible source of information
Can share experiences of coping with side effects or other barriers to adherence
Can attest to the consequences of non-adherence
National Association of People Living with HIV/AIDS
HIV-infectedAdherent to antiretroviral therapyFamiliarity with communityAbility to reflect on an apply life experienceBe able to develop basic counseling, listening and
support skillsRecruitment ? Selection ?
PLHIV peer worker qualifications
National Association of People Living with HIV/AIDS
References
Linnan, L., et al., Training health professionals and lay volunteers to deliver cholesterol screening and education programs. Public Health Reporter 105(6): p. 589 – 598
El-Sadr, W., et al., Effectiveness of Peer Workers In a Treatment Program for Latent TB Infection. Presented at 2001 International Conference of the American Thoracic Society. 2001. San Francisco, CA
Findley, S., et al. All support may not be equal: Social support and adherence among HIV-infected patients in an inner city clinic. Presented at XIV International AIDS Conference, 2002, Barcelona, Spain
Harlem Adherence to Treatment Study, Harlem Hospital. Peer support for HIV Treatment Adherence. 2003.
SAHARA.org.za/index.php
National Association of People Living with HIV/AIDS
See also
Re-imagining PNG, Culture, Democracy and Australia’s Role, Ben Scott, 2005
A Dirty Little War, John Matinkus, 2001
A Pedagogy of Hope, Paulo Freire, 1994