Mama Dora

One of the participants at the 2nd Indonesian Meeting of People Living with HIV in September 2001 was a Papuan woman from Merauke. Her name was Theodora, but everyone called her Mama Dora. At the meeting, she found that she was not alone, that her life still had meaning. She went back to Papua determined to speak out and make a real impact on the HIV epidemic in her home area, an epidemic that was then beginning to explode. With the skills and self-confidence she had received at the meeting, she soon became a very effective and compelling speaker, and within a few months, was well known around the province, with her picture appearing in several newspapers. She often accompanied the Vice-Governor when he spoke about AIDS in the province.

Sadly, in December 2001, Mama Dora fell sick. She died in January 2002 – an irreplaceable loss to the efforts to stem the tide of AIDS in Papua. Her friends and colleagues in Spiritia and nationally vowed to avoid a repeat of this loss. It was crucial that courageous activists such as she should receive the treatment that they needed to stay healthy. Thus was the Spiritia ARV Fund born.

It was not long before it was needed again. My colleague, Yuni, was hospitalised with PCP in early 2002, and her health just went from bad to worse. Not surprising: her CD4 count was only 17! Triple-combination antiretroviral therapy (ART) had then just become available in Indonesia, but the price was well over Rp 1 million a month - I forget the exchange rate then, but this must have been around $1,500 a year - far beyond the reach of a Spiritia activist.

Yuni had given up hope. After three months in hospital, fungus in her throat made it difficult for her even to drink, and she was just fed up with taking pills. She told me afterwards that there were two angels waiting for her in the corner of her ward. But finally we found the money for the ARV Fund to buy the drugs, and (after some resistance), persuaded her to start on ART. A week later she was out of hospital! Talk about Lazarus!

Yuni is still with us. Since then, she has missed only one dose, her CD4 count is in the 800's and her viral load is undetectable. She still works in Spiritia, now as a supervisor responsible for peer support groups in all provinces in Sulawesi, Papua, West Papua and Central Java. Quite a task!

With the help of Susan Paxton and a number of other private donors, the ARV Fund did its job, stimulating the start of ART in several areas - including in Merauke (I'll tell that story some other time). Now, with access to ART provided free-of-charge in Indonesia, the fund is no longer needed to buy drugs. It now supports early testing of infants born to HIV-positive mums, so the parents don't have to wait 18 months to know if their baby is infected. Hopefully soon that test will also be available free, though I'm sure other uses for the fund will appear.

But Mama Dora is still often in our thoughts.

Babé