In Kuala Lumpur, we, the civil society made history for the first time when it comes to TB. We spoke for the infected and affected people that were not there and for those who cannot speak because they are shut down by stigma and discrimination by the rest of us. We spoke for the children around the world who, up to that day, were not included in the vulnerable groups and treated as a mere shadow in the TB epidemic. We demanded government accountability, increased donor financial support (especially, for women and children), we demanded research for new drugs and easy availability of existing first line and second line drugs. We demanded that governments and donors start to pay attention to our children–new children tailored diagnostics and screening at primary health care level and child-friendly TB-drug formulations. We demanded governments to rethink and recognize the added value civil societies can bring in this fight against TB and engage them as they have already reached their capacity and need support. As it always happens, a lot of excitement is generated and promises are made every year during World TB Day and the TB conferences. However, what happens thereafter is what counts. And my question to all of us who wrote the civil society declaration on TB, and marched together this year on 14th November, is how the civil societies and TB advocates (including myself) will continue to be excited and outraged? How are we going to follow up and make sure that our governments actually implement the declaration and that the donors allocate more money to TB? How are we going to make sure that drug companies start putting peoples’ lives before their profits? How long can we continue to face the fact that new TB drugs are taking so long to come by because the ?market for TB drugs is small and drug companies do not want to invest on drugs that will bring them small profit?. The question is where are the ethical principles? Where is the professionalism? Where is the compassion for people’s wellbeing? How then can we ever win this fight?
Following my return from the 43rd Union World Conference on Lung Health (13-17 November 2012, Kuala Lumpur) one evening I happened to be watching CNN, when suddenly, hooray, TB was the topic of a roundtable discussion. Few tips were given on how TB spreads, few tips were given about the long duration of the treatment and the ?graduation of TB to MDR-TB? and yes, a long discussion of how TB enters the US and, yes of course, it was blamed all on the immigrants– the Mexicans crossing the border, the Eastern Europeans, the Africans, and many other underprivileged and marginalized groups. Isn?t it always the case of someone being blamed for something that someone else is not doing right?
What people do not seem to understand is that they do not have to be one of the under privileged groups to get TB. As long as they breathe the same air that we all breathe into our lungs, they and their children can get TB. I was infected with TB in one of the biggest hospitals in New York City during the TB outbreak in 1992 and I did not belong to any of these groups– I was a middle class citizen and a health worker.
This year, at the Union conference, the Kochon Prize (awarded to persons or institutions/ organizations for making significant contributions to combating TB) was given to Desmond Tutu TB Centre at Stellenbosch University in Cape Town. The centre?s patron, Archbishop Emeritus Desmond Tutu, in a recorded televised address to the conference delegates during the award ceremony, spoke about the suffering of TB among children in Africa and demanded the focus to be on children of that region. I was immediately taken aback. Why only children in Africa? What about children in India, in Central America, in Eastern Europe? What about children everywhere in the world…? We should demand governments? and donors? accountability for children in every corner of the globe. Another presenter’s last power point slide at the Union conference was that of his smiling, healthy grandchildren with a footnote hoping that today’s interventions will ensure that his grandchildren will not know TB in their lifetime. It would have done something to me and touched my heart (especially if I was a donor), if the photo was not only of his grandchildren but of other children‘s smiling faces as well. And let us face this reality, howsoever harsh it may seem, that children around the globe will continue to get infected and die from TB unless we shape up and start delivering quality and free DOTS services to all, regardless of where they live. Over the years, global leaders around the world have been shown to pick-up, hug, and kiss children during their campaigns. It makes them look as though they really care for them. But they do it mostly to secure more votes. Why can we not hold them responsible for that and tell them that one day of benevolence is not enough?they should ACT now by investing in children?s’ future and ensure that children are free from TB. MDR-TB was just a talk few years back but now it is a reality and even if patients are diagnosed with MDR-TB, many die while waiting to be enrolled in MDR-TB treatment. Political and donor commitment must be swift and governments must take responsibility. There is not so much lack of resources but definitely there is lack of will. And when there is a will, we will find the solution.
Hara Mihalea CHE, MPH
Public Health and Tuberculosis Consultant