Statement from the Igat Hope Third National Conference on the meaningful participation of people living with HIV in Papua New Guinea’s response to HIV

 

The participants of the 3rd Igat Hope National Conference held in June 2018 declare that they will work together to strengthen the participation of people living with HIV in the response to HIV. Igat Hope is PNG’s national organisation of people living with HIV.

 

The Conference was attended by more than 50 people living with HIV from NCD and fourteen PNG provinces. It was supported by the PNG National AIDS Council, the Australian National Association of People Living with HIV and AIDS (NAPWHA), ASHM International, APMG Health and the Collaboration for Health in PNG (CHPNG). 

 

There are four key areas that we want to draw attention to and declare our support for.

 

1 THE MEANINGFUL PARTICIPATION OF PEOPLE LIVING WITH HIV

 

Igat Hope welcomes the endorsement of the National STI and HIV Strategy 2018–2020 and we are particularly reassured to see that one of its core values is the meaningful participation of people with HIV in PNG’s response.

 

How do we make this real? We acknowledge that Igat Hope has representation on the national AIDS Council and its committees, on the Technical Working Group of the Department of Health and on the PNG Country Coordinating Mechanism (CCM). To make our contribution meaningful, Igat Hope needs to be able to properly support our representatives on these committees and to bring the views of our membership on important issues to these committees. We can’t do that without stable core funding for our organisation. 

 

We also need resources to support our provincial networks and groups to engage in the provincial response to HIV. As the Provincial Health Agreements (PHAs) become more established, it is important that provincial PLHIV groups can be supported to be involved in planning, implementing and evaluating provincial and district level services. To do this effectively, provincial PLHIV networks need to be funded under the PHAs to play their role.

 

Igat Hope needs to be supported to build the capacity of its provincial members so that they can do this important work in strengthening the voice of people living with HIV at all levels in PNG.

 

2 ENSURING A CONSISTENT SUPPLY OF LIFE-SAVING ANTIRETROVIRAL THERAPY 

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The recent stock-outs of antiretroviral therapies (ART) and of the medicines to treat opportunistic infections have demonstrated that our ART and other medicines procurement and supply systems need urgent attention. We need to be assured that the 3-month buffer of ART supply will be maintained at central stores and at clinic level. We need better tools in place to monitor stocks and expiry dates of ART in central stores and in our clinics. There are even tools available now that can help to monitor how much ART supply people living with HIV have at home. Putting these tools in place would help us to target our community adherence support to the people who need it most and reduce loss to follow up and resistance.

 

We would like to train and support our provincial networks for a role in monitoring ART and opportunistic infection drug supply levels as an early warning. Our members know best when supplies are low as it affects them directly.

 

We want to see quarantined funding set aside for ART so that we can stop worrying about stock-outs.

 

3 IMPROVING THE QUALITY OF HIV CLINICAL CARE AND THE HEALTH OF PEOPLE LIVING WITH HIV

 

We were informed at this Conference that the number of people living with HIV in PNG is now estimated to be around 70,000. Not all of these people know their HIV status and not all of them understand their illness and how to manage it. This is something we need to urgently address. We would like to be involved in community-level HIV counselling and testing to improve knowledge of HIV status, using some of the strategies used in the recent IBBS study to reach people who have not yet been reached. (1)

 

Igat Hope wants to continue and strengthen its role in helping to improve the quality of clinical care. Too many of our friends are still dying. Our peer educators and counsellors are playing an important role in linking newly-diagnosed people with HIV to treatment and in helping them to stay on treatment. We are also supporting adherence to treatment and reducing loss to follow-up by sending our peers into communities to help people living with stay connected to clinics for their care.

 

We are worried about reports of increased resistance to HIV treatments. If our workforce peer educators and counsellors are strengthened and rolled out more widely we can help to reduce ART resistance by supporting adherence and reducing loss to follow-up.

 

The National Strategy calls for this scheme to be expanded and we strongly support this. We want these positions to be part of the permanent multi-disciplinary clinic team. We are currently being supported by USAID and the Global Fund to place peer counsellors and peer educators in ART clinics across the country. For this to be sustainable, we need to work with government, Church and NGO health services to make sure these positions are integrated into provincial health budgets 

 

We are also worried about vacant positions in the health system. Many of the clinics we use have limited access to doctors. Our members complain that while the nurses and health extension officers are able to prescribe ART, many complex health problems that we and our friends suffer from go undiagnosed and untreated. In many cases we see this resulting in unnecessary illness and even death. We need more doctors on the ground and more clinical mentoring for our hardworking nurses and health extension officers.

 

4 SUPPORT FOR WOMEN AND CHILDREN

 

Many women living with HIV in PNG have a greater burden to carry, as many are single mothers. They receive little recognition and support and often prioritise the health and wellbeing of their children over their own health. Igat Hope would like to work with the government and care providers to find better ways to support these women and their children. We want to ensure that women living with HIV are diagnosed and treated as early as possible. This is the best way to ensure healthy children and strong families.

 

Women with HIV who are widowed often lose their possessions and homes under unfair inheritance laws and practices. We need to see these laws and practices reformed so that women with HIV have the resources they need to live long and healthy lives and to raise their children.

 

We also want to support the women who are caring for children with HIV, particularly as these children become adolescents and need to transfer their care to adult clinics. This can be a difficult transition and these adolescents and their mothers need our particular support.

 

Finally, we are concerned about the care and support options available to orphans of parents who have died from HIV. Families and communities need to be supported to take these children into their care. We would like to support our provincial members to take up a role in mobilising more support for these children.

 

This is summary of the main issues raised by our members at Igat Hope’s 3rdNational Conference. 

 

Igat Hope is ready and willing to play a role in addressing the four key issues raised in this statement because we have lived with the disease and we understand it. We understand that the only way to manage the disease in this country is to create awareness and to help people with HIV to access HIV testing, understand their results and to access and stay on treatment.

 

We are the ones who have the experience of living with HIV and we have much to offer.

 

We ask that you work in partnership with us to achieve our goals.

 

Janet Sangopa

President

Igat Hope

7th June 2018

 

1 http://www.aidsdatahub.org/sites/default/files/publication/PNG_Kauntim_mi_tu_Multi-Site_Summary_Report_from_the_Key_Population_IBBS_2018.pdf