The 8th International Conference on AIDS in Asia and the Pacific, or ICAAP8, is currently being held in my home city Colombo, Sri Lanka, and runs from 19 to 23 August 2007.
As I wrote earlier, some of us who have a track record of communicating on HIV/AIDS have been excluded from this conference by the arrogance of its organisers. And having just read the biography of Sri Lanka’s best known HIV/AIDS activist, I now understand why.
Good books help us experience a range of emotions. A Life in the Round: Desamanya Kamalika, The Girl from Giruwa Pattuwa by Hilary Abeyaratne (WHT Publications, Colombo, 2006) made me outraged and deeply ashamed of the kind of sick society I live in.
Here are some depressing ‘lowlights’ from the book:
* Some medical professionals and para-medics simply refused to treat one of their own kind who was accidentally infected with HIV (fearing infection from casual contact!).
* A leading government hospital carelessly stocked and peddled blood contaminated with HIV. When discovered, it was quickly covered up, and the official investigation was suppressed.
* Some NGOs and charities have turned HIV activism into a self-serving, lucrative industry. There are fierce ‘turf wars’ to claim persons living with HIV as their institutional ‘property’.
* The public health system mandated to care for those living with HIV reinforces stigma and discrimination against such persons.
That’s just for starters. The book packs more shocking details on mass-scale ignorance about basic facts, bureaucratic apathy and a nation in staunch denial about the human immunodeficiency virus.
And we understand why the merchants of misery detested Dr Mrs Kamalika Abeyaratne, who stood up and spoke out for the rights of those living with HIV in Sri Lanka.
She was an extraordinary Sri Lankan woman and a dedicated physician, and the book is her life’s story told by her family and friends. As the cover blurb says: “This is a sad but inspiring account of the joys, sorrows, achievements and disappointments in an all-too-brief but beautiful life, cut short by tragedy and a courageous battle with HIV.”
In 1994, Dr Kamalika was involved in a serious road accident while heading to a rural location where she was to conduct a free medical clinic. While being treated at a government hospital, she was administered HIV-contaminated blood. Media investigations later revealed how intravenous drug users had routinely sold their blood to this hospital, which had few checks in place. This created a major scandal in the public health system — ironically, the very system that she had served for many years.
Dr Kamalika (Kami to her friends) was one of the very few Sri Lankans who openly acknowledged their HIV status. She paid a dear price for this admission: she was shunned and maligned by many members of her own medical community. Undaunted, she spent the last few years of life as an activist campaigning for the rights of persons living with HIV. She waged an almost lone battle for access to anti retroviral (ARV) treatment.
As Sonam Yangchen Rana of UNDP’s Regional HIV and Devlopment Programme has noted: “As a champion for the rights of people living with HIV/AIDS, she had become an icon for PLWHA in the region. Spreading awareness about issues surrounding the epidemic had become the mission of her life. She campaigned vigorously against stigma and discrimination faced by people living with HIV/AIDS and exemplified that PLWHA can lead productive and meaningful lives. productive and meaningful lives.”
And here’s a revealing extract from her biography:
“Paediatrician turned activist, here is the story of Kami’s involvement in the HIV/AIDS campaign. A story that suggests rather wryly that it is not only about People Living with HIV/AIDS (PLWHA), but also about those who have been called People Living off HIV/AIDS (PLOHA). Kami’s own statement on this issue was that the known number of both groups was about the same, with some of the latter, representing some non-governmental organisations (NGOs) or other, living in five-star hotels, driving around in Toyota Land Cruisers, and using up sixty percent of their resources on ‘administrative costs’.”
So now we know why some organisers of ICAAP8 were so defensive and protective of ‘their’ virus: after all, it is their horn of plenty that they cannot share with anyone else. These PLOHA are the mandarins of HIV/AIDS, Incorporated.
On a personal note, I always admired Dr Kamalika but never got to meet her. Our paths almost crossed once in July 2000, when I had helped Panos South Asia to organise a media gatekeepers’ meeting on HIV which she addressed. But the night before, I was struck down by influenza, and didn’t get to participate in what had been a stimulating meeting.
Read Dr Kamalika Abeyaratne: A Profile of Courage, written by my friend Manori Wijesekera in 2003: