Building PLHIV Organisations and Networks

Building PLHIV Organisations and Networks in PNG and Timor-Leste John Rule, Deputy Director, NAPWA

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 Bangkok Funded by AusAID from June 2005 for three years. $200,000 per year

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…

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.

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

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.

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

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 8 th Sept 2005 and two day governance training workshops following AGM. Also in 2006 and 2007.

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.

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.

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…

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.

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”.

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.

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

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.

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?

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 spaces Mentoring in engagement with health care systems

How PLHIV peers work ? Act as a liaison between the provider and client Serve as a ‘system navigator’ Translate medical information Provide linkages to other support mechanisms Relay information from clients to providers Deliver prevention messages Support ‘medication supervision’ Be role models

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

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

HIV-infected Adherent to antiretroviral therapy Familiarity with community Ability to reflect on an apply life experience Be able to develop basic counseling, listening and support skills Recruitment ? Selection ? PLHIV peer worker qualifications

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

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

Building PLHIV Organisations and Networks

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