At the beginning of the year 2000, I began a long, intimate relationship. A bacteria, which I had met in a Malagasy squatters camp, decided to itself squat in my lung. It was an ideal home — warm, dark and with ample food on stock, and so my microbe made babies. I had no idea they were there, or who they were, for another 18 months. By then, they were well housed, fed, and breeding like, well, bacteria. By then, I was close to death.
My relationship with very Multi-Drug Resistant Tuberculosis (MDR-TB) from 2000 to 2005 will be covered in another blog. One day I will write of the struggle as a migrant (sans-papiers) to get access to health care, the battle to keep custody of my toddler children, resisting the incapacitating ravages of the disease and finally, surviving four years of toxic nightmarish treatment that quickly destroyed my vision, hearing and other bits. In the end, the long fight against MDR-TB left me with just a bit of my lungs remaining, but as long as I can gasp a little oxygen for my little brain, my principles and sense of justice are alive and kicking.
When I began to suspect that I had tuberculosis, I began to use the internet to learn about the disease, the situation around the world, and its impact. I soon realised that TB was not only a disease of the poor and marginalised, but that patients, when diagnosed, were just passive recipients of dubious treatment and statistics for annual reporting of the national programmes. People with TB had no say in any aspect of ’TB Control’, as the ‘controllers’ did not view us as fellow human beings worthy of dignity nor of respect for our human rights. In hundreds of countries, the situation was the same – TB patients were very poorly treated, medically, socially and psychologically. For those with drug resistant TB, there was virtually no treatment nor even diagnostics available in most countries, so you probably just died, slowly and painfully. For those co-infected with HIV, the same gruesome end. So, in spite of being in midst of battles to stay alive and secure my rights, including to health care, I returned to being a community artist / activist.
In 2003, I began an initiative with Winston Zulu, a friend from Zambia, to defend and to advance the human rights of people with tuberculosis. TBTV aimed to build a network of people with TB and TB-HIV, to amplify their voices”loud ’n clear”, to demand our rights and to support our peers in the communities. We believed that this would help to improve the quality of care for the millions of people that are infected by TB each year, and perhaps save some of the lives of the almost 2 million that die needlessly from the disease annually. But we were wrong. Although we had gathered together a great group of patient-activists ready to speak-up and to volunteer their time, we saw that our ‘voices’ were only allowed as ‘token’ presentations that looked good for ‘brand’ of the TB ‘Controllers’. Our efforts did nothing to budge their top-down power structure even a millimetre. We realised that we needed a stronger foundation for more meaningful advocacy, and so we decided to use the development of a rights-based Charter, by and for TB patients, as a organising tool, and once published, to get it included in the WHO Stop TB Strategy and other institutional guidelines and strategy documents. So, the process of ‘open’ developing a participatory Patients’ Charter for Tuberculosis Care (PCTC) began.