Irreplaceable campaigner for people with HIV

Chris W. Green, Contributor, Jakarta, chrisg@rad.net.id

"It's not the label -- it's how you wear it." In 1995, when Suzana Murni was told at the age of 23 that she had AIDS, the label represented shame.

Like most in that situation, she knew little about the disease and didn't know where to look for more information. "OK, I'll just wait to die," was her initial response.

But after six months, she didn't get sick. She just became angry: angry at the way her partner had been treated after he died of AIDS; angry at the way the label was worn; angry that she knew so little about the disease. So she started to look for information.

Suzana found she was not alone. She met with others with HIV, and found that these meetings broke their feelings of isolation. So she formed the first peer support group for HIV positive people, which she called Spiritia. As she put it, "in the absence of treatment, spirit is what you need to go on."

Early on, Suzana recognized the role of advocacy to counter the shame. And because of her excellent English -- she was educated in the USA -- it was natural that she should go international with her advocacy.

In October 1995, she attended the Third International Congress on AIDS in Asia and the Pacific in Chiang Mai, Thailand. There she met Susan Paxton, a founder of the Asia Pacific Network of People living with HIV (APN+), and a leading AIDS activist in the region.

Paxton persuaded Suzana to join the board of APN+ as Indonesia's representative and shortly following this she became a regional representative for GNP+, the Global Network of People Living with HIV. She also attended a regional AIDS meeting in Pakistan, and came back extremely concerned about the way people with HIV were stigmatized throughout the region.

In 1996, she attended the International AIDS Conference in Vancouver, Canada, where she gave a moving speech at the closing ceremony. Part of this was broadcast on TV in Indonesia, although few here made the connection.

But her greatest concern was for people living with the virus at home.

"Suzana worked tirelessly to advocate for and build a strong network of HIV-positive people in Indonesia," recalls Paxton. "She wanted to ensure that they had the skills to respond appropriately to the epidemic and that they be given a voice at all levels of government."

Suzana used Spiritia as a means to press for the greater involvement of people with AIDS, a principle first outlined at the Paris AIDS Summit in 1994, and one that she wholeheartedly supported.

Spiritia organized the first national meeting of people with AIDS in 1998. This meeting provided the first opportunity for most of the participants to meet others with AIDS, and to share feelings and experiences.

From the start, Suzana emphasized the need for advocacy to increase access to treatment. But unlike many other activists, she recognized that treatment was not just a matter of pills. Because at the time of her diagnosis she had felt so unempowered by her lack of knowledge of the disease, she strongly encouraged me to start WartaAIDS, a newsletter to provide information on all aspects of treatment for people living with the virus. She also put great value upon other complementary therapies, not just herbal remedies, but including music and spiritual therapy.

Underlying all was her total belief in the value of peer support. Those who have not witnessed it can perhaps not imagine the effect of one first meeting with her by people recently diagnosed. You could almost see the burden being lifted from their shoulders; the first smile perhaps in weeks; the understanding that they are still people of worth, with a role to play in helping others to protect themselves.

Those who heard her talk in public recognized her quiet charisma. But it was her peers who felt immediately touched by her presence.

Suzana was of course well aware of the drugs that could extend the life of people with AIDS. But it was not until the middle of 2001 that their prices became affordable. Even then, it was a struggle to get her to start -- she felt that it would be unfair for her to get treatment that was still out of reach of most of her peers.

Sadly, it was too late. Despite starting the therapy in August 2001, Suzana was diagnosed with lymphoma in October. This was shortly after her poignant and moving address at the opening ceremony of the Sixth International Congress on AIDS in Asia and the Pacific in Melbourne, Australia. A commitment she insisted on fulfilling despite her weakness.

She started chemotherapy, but the cancer spread, and Suzana slowly became weaker. She finally passed away in her home in the early hours of July 6, surrounded by her family, including her adopted son who had just had his second birthday.

Suzana was perhaps better known in global forums than she was here at home. Messages of grief and support have poured in from around the world.

Peter Piot, Executive Director of the Joint United Nations Program on AIDS (UNAIDS), noted the "tremendous loss for all those who stood to benefit from her courage and tireless efforts." Many remember her calmness: as one friend from New Zealand put it, "... never was there a more gentle soul that gave so much and was so dedicated to helping others."

Shaun Mellors from South Africa, one of her greatest supporters since her early days with GNP+, put it: "She was indeed an inspiration to so many, she spoke out when no one else could, she inspired when others were fatigued, and she will continue to inspire as we fondly remember her. Her light and inspiration will never fade, and her passing reminds us that the fight is far from over."

And from the USA, another friend notes that "Suzana's gentle spirit and quiet strength inspired many of us, and will continue to do so each time we remember her."

But those who will miss her most are the nameless "little people" who were always her first concern. Among these were the sex workers and transvestites who are Spiritia's "neighbors", to whom she dedicated an outreach program called Blok M After Dark.

She was always most at home meeting with others with HIV, encouraging them, supporting them, empowering them, and comforting them. For these, Suzana is irreplaceable.

She wore her label, not with shame, but with confidence and humility.