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The power of visibility — My story as the first person who came out as a person living with HIV in...

Jokapeci Cati is the Program Manager and founder of the Fiji Network for Positive People (FNP+). This is her self-told story of how she became the first person living openly with HIV in Fiji.

I grew up in the harbour town of Suva. I was brought up in the Seventh Day Adventist Church. During youth camps we had two sessions on HIV. To me it was just a session. I had this perception that I am not promiscuous so I can’t become HIV positive.

I got married at 21 and got infected in my marriage. I was diagnosed in 2000 but I suspect I was living with HIV since 1999. My husband was sickly and became bed ridden. I did not blame him. I felt like he got infected before we were married and did not know he was living with HIV. In 2003 he died due to AIDS-related causes. He was 31.

We did not have treatment in Fiji at that time. People living with HIV were just monitored. When I was diagnosed they told me “you have to look after yourself because you can die”. In the initial stages there was depression, denial and stress. But as soon as I got diagnosed one of my dreams was to meet another person living with HIV.

With my family there was no change in the way they treated me. It was support from the word go. I did not see any element of discrimination from my parents and siblings.

Going public

Coming out was not an overnight decision for me. It took me six months to juggle the pros and cons. Somehow my mind was not dwelling on the negative. Because there was no support system in place at the time, I felt the need to speak out.

So I started with the church. I went to the pastor and told him of my diagnosis. Then I had to disclose to my church community. The hardest bit was opening up to your very own people. Once I gained the support of the church I spoke to the Council of Chiefs, Fiji’s traditional leaders forum. Because those platforms gave me a positive reception I then went to the media because I felt I was ready to speak to the nation.

Organising and advocating

In 2003 I was privileged to meet the right people at the Ministry of Health and we coordinated the first meeting of FNP+. By 2004 I got the organisation registered, up and running.

From the start I was advocating for treatment because I could see my first husband dying. The Ministry of Health’s HIV coordinator at the time, Maire Bopp Dupont, connected us to the Asia Pacific Network of People Living with HIV. That is how I got to know that other countries in the region were offering treatment. We went to the Council of Chiefs and Parliamentarians to advocate. The Health Ministry at the time was saying “we are not ready… we need to put the systems and structures in place”. I think because we came out publicly it put some pressure on them. The very next year, in June, treatment was available.

It was exciting. For the first time we felt the advocacy was worth the sacrifice. Our work involved talking to nurses, doctors and civil society organisations that were part of the care team. I started antiretroviral therapy five years ago when we adopted the “treat all” policy. It is so exciting that we are able to take treatment with the assurance that we would live! And it is for free!

Living live fully

I did not let HIV decide my future. Because of being part of the FNP+ management team I found the need to venture into education. I got a degree in psychology and social work from the University of South Pacific.

When I lost my first husband I was in this dilemma about whether to have children. I met my current husband in the HIV organisation. When we decided to have children, it was a public affair in Fiji. I was an HIV positive, pregnant woman. It was a learning curve for me and the entire nation.

The UNAIDS Goodwill Ambassador for the Pacific, Ratu Epeli Nailatikau, was Fiji’s President at the time. He made it his business to come to the hospital during my delivery and my first son’s HIV test. He wanted a copy of my son’s HIV negative test result. This became his advocacy document. He has been spreading the message since then that there is no need to discriminate against women living with HIV who want to have children. It’s time we support them through prevention of mother-to-child transmission (PMTCT) treatment. I am now the mother of three HIV negative children.

The way forward

We are working to get FNP+ funding from the Global Fund to continue our national activities and regional support. I’m glad the focus is now on community-led monitoring and services and that it’s coming from the donor’s mouth.

Other Pacific countries don’t have networks of people living with HIV. Fiji is the only one. People throughout the region are living in isolation. Our second piriority is to organise at the regional level.

Our third challenge is that although everyone who is living with HIV is encouraged to take treatment, we have stockouts. At one point we weren’t getting Dolutegravir so people had to change to a combination of drugs until it became available. Labs are also a challenge, especially the turnaround time for viral load tests. If FNP+ does not continue to apply pressure to address these issues people would suffer silently.

HIV in a small island developing state

For sure people living with HIV from key population communities have had a more difficult time. They were ostracised, they were discriminated against. I did not face that. There was a time, around 2004 and 2005, when people who died due to AIDS had to be burned at night before the sun rose!  The stigma and discrimination are not as bad as that now, but they still exist.

I think in the Pacific it is really hard to come out with your HIV status because of our small size. We have these connected communities and if someone comes out it is easy to trace who else could be HIV positive. We have this communal upbringing so people don’t want any negative repercussions for their families.

When other people living with HIV meet me, they are happy. They want to come out and speak, but they don’t know how. Now there is funding for this community engagement in more Pacific countries. We just need to give them support and a bit of time. 

Fiji recently received technical support for the seventh cycle of Global Fund applications and the Indo Pacific HIV Prevention Program supported by the Australian Department of Foreign Affairs and Trade (DFAT). UNAIDS Pacific supports peer network meetings to encourage sharing among PLHIV. UNAIDS also recently collaborated with Rainbow Pride Fiji Foundation, the Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM) and the National Association of People with HIV Australia (NAPWHA) to develop a PLHIV booklet in the local languages. This booklet provides information on living with HIV and helps empower PLHIV to take control of their health and wellbeing. This project is supported by the New Zealand Ministry of Foreign Affairs and Trade and DFAT.