The way of the pioneer is always rough

More sad news, I fear. We've lost one of the very earliest of our activists. Sulasi was always open about her status, so I don't think I need to hide her name. She was identified as HIV-positive in 1991, in Surabaya. Like our late friend in Makassar, her case became a sensation.

As one of the very first, she was 'monitored' by the local health department. When she decided to get married a couple of years later, this was forbidden. But Sulasi was always 'her own woman', and went ahead with the wedding anyway. Her husband was (and is) HIV-negative. Given a fait-accompli, the health people said, 'OK, but no children.' Again, Sulasi made her own decisions, and gave birth to two lovely kids, neither infected.

The family returned to her home village about an hour by bus and motorcycle taxi from Malang in East Java. But it got out that she was living with HIV, and she was expelled from the community. She moved to another village, but happily after some time, her original neighbours accepted her back, and she returned to the village with her family to plant coffee. I was lucky enough to meet her and the family in her home in 2002, in a lovely area in the hills to the east of Malang.

It was not until around 2003 that she needed antiretroviral therapy (ART). She started with the standard regimen, supported by Susan Paxton's ARV fund. Unfortunately, she experienced bad side effects from the nevirapine, and at that time, there was no alternative available, so she had to downgrade to dual therapy, Then she suffered from anaemia, and had to change the AZT with d4T. Of course, at that time, there were very few doctors who understood ART, and she again she played a pioneer role.

As I said, she was one of the early activists. She was one of only 16 who attended the first national meeting of PLHIV in Bali in 1998, and she also joined the second meeting, also in Bali, in 2001, where I first met her. In the early 2000's, she was active with the positive community, always being willing to invited to take part. She was one of the first to join in our 'local strengthening visits', as a member of the team with Suzana and I (and Ariel, Suzana's adopted son), on a visit to Makassar in early 2002.

A couple of years later, when UNICEF planned to shoot an Indonesian version of its training video 'With Help and Hope' about the lives of people with HIV, Sulasi was an obvious choice. Do take a look at her story.

In the last few years, we rather lost touch. But we heard from her faithful supporter from the early days, Dr, Kamboji, that she had been admitted to hospital, and he just rang Yuni to tell her the sad news.

We've 'used' Sulasi as an example of one who can survive for more than ten years without ART and progress well again after starting treatment. So apart from all else, we've lost a role model.

Babé