The greater involvement and empowerment of the community of people living with the Human Immunodeficiency Virus (HIV) is critically important to end HIV in the Western Pacific region. A regional forum held in Fiji this week is taking positive steps towards making this happen.

The United Nations Development Programme (UNDP) in partnership with the Fiji Network for People Living with HIV (FJN+) and the Joint United Nations Programme on HIV/AIDS (UNAIDS) organized a two-day forum – the first opportunity in the past eight years for people living with HIV in the region to bond together in such a set-up. Some 55 participants attended, including people living with HIV and health workers from Federated States of Micronesia, Fiji, Kiribati, Nauru, Palau, Republic of Marshall Islands, Samoa, Tonga and Vanuatu, as well as development partners and civil society organizations working on the HIV response.

In his opening remarks, FJN+ Board Chair, Emosi Ratini, reached out to the people living with HIV in attendance: “This forum provides a prime opportunity to share our experiences from back home to steer the best way forward. So please, my fellow positive people, this is your chance to bring about change in your community. It is high time that we make a difference in our individual countries. We need to stand up now, speak up now, and make noise now if we are serious about building better communities, better nations to prevent new HIV infections, and a comprehensive care system in the near future.”

The forum provided opportunities for dialogue among people living with HIV in the region, to facilitate strategic engagement of the community in programme and policy design, as well as to address recommendations from the landmark 2017 Pacific People living with HIV Stigma Index study – a seven-country study conducted by FJN+ with support from UNDP that measured stigma and discrimination towards people living with HIV.

During sessions at the forum, a peer sharing, and mentorship format was adopted, which put the emphasis on sharing of experiences and best practices by the community themselves. Sessions focused on key issues to improve the well-being of people living with HIV, including increasing awareness and understanding of anti-retroviral treatment, such as useful definitions and side effects of medicines, establishing local support groups at the country level, sharing knowledge on prevention of mother-to-child transmission, and developing advocacy strategies to achieve policy change.
 

A goal of the three-day forum was to strengthen adherence to treatment and care services going forward. Peer educators and mentors will have an important role to play in this, given their deep understanding of what people living with HIV are experiencing in their day-to-day life. 

“From the session today on treatment adherence and education, we have a plan now to begin anti-retroviral treatment when we go back home,” said a participant of the forum who is living with HIV. During the forum, a total of five participants committed to start taking HIV treatment.

“I just met my friends here at the airport. I didn’t know that we live in the same village … so now we will exchange contact information and try to support to each other. We are both not public about our status,” said another.

 “It’s not easy growing up in the Pacific living with HIV,” said UNAIDS Goodwill Ambassador for the Pacific, H.E. Sir Ratu Epeli Nailatikau. “Fiji and most of our countries are entrenched in culture and tradition, and with this comes taboos of things that we don’t talk about, and we don’t talk to our children about. However, with globalization and the effect on our nation and youth, these taboos need to be brought up in every home and community and not put aside.”

The Pacific People living with HIV Stigma Index study found that disclosure by people living with HIV in the Pacific is low, and stigma and self-stigma levels are very high. 28 percent of respondents had never disclosed their status to another adult family member, and of those who had disclosed their status to another adult family member, 36 percent found the reaction to be discriminatory.

The study also found that people living with HIV lacked the support they needed. Many participants in the study had never knowingly met another person living with HIV. In almost all of the countries studied, people living with HIV stated that apart from their immediate families, they had no other support mechanism where they could give and receive emotional, social and spiritual support, where they could ask and obtain information on positive strategies for living with the virus or where they could strengthen their knowledge about HIV and AIDS. None of the countries had any formal support groups set up where people living with HIV could receive firsthand advice and learn from their peers who were coping with very similar circumstances. 

“I have been living with HIV for 21 years and nobody knows about my status,” said one participant. “After coming to this meeting, my new friends that I’ve met here have agreed that we will set up a support group for other people living with HIV.”

“This regional forum provides an important, safe environment for people living with HIV to meet others in the same situation as them in the Pacific, to talk and share their experiences,” said Anna Chernyshova, Programme Manager at UNDP Pacific Office in Fiji. “For the response to HIV to be successful in the long-term, it’s crucial that the community have their voices heard, and for those in the policy and programme sphere to ensure that services provided meet the community’s needs.”

This activity is supported by the Multi-Country Western Pacific Integrated HIV/Tuberculosis (TB) Programme. The programme is funded through a three-year grant from the Global Fund and aims to strengthen control of HIV and TB in 11 Pacific island countries.