In 1992 Hara was working with the New York State Department of Health as a disease intervention specialist in STIs and HIV, when there was an outbreak of tuberculosis in the city, and she was exposed to first hand experiences of the world of this dreaded scourge. The previous year she had gone to Greece to visit her family and unwittingly got infected with TB from her sister in law who had TB but did not know about it. Hara had never realized in her wildest dreams that she was at risk of TB. But the most shocking aspect was that she was discriminated and stigmatized even in her own hospital in New York. She was looked down upon as a hospital staff and made to feel isolated and untouchable. She rues, “Even now after so many years I get goose bumps when I think of those times.”
But what is more disheartening for Hara is that things do not seem to have changed much on this front even after so many years. “It really breaks my heart when I see that even 15-17 years later we are at the same place where we used to be. Things have not changed much and to me that is outrageous. I have often seen medical doctors and health care providers shun TB patients. I just cannot come to terms with this.”
“The scariest thing for me and for thousands of other people now is Multi Drug Resistant TB (MDR TB) which is fast replacing regular (drug susceptible) TB. And the majority of MDR TB cases are not new cases but re- treated TB cases. This means that the DOTS program has failed. MDR TB is there because we are failing on basic TB. A few years from now we are going to have an MDR TB situation which we will be an uncontrollable disaster.”
Where does the problem lie and what should be done?
“The problem lies at the government as well as the donor level. I do not think that there is shortage of money, but it is not being utilized properly. Donors need to set and pre define their expectations from the countries their money goes to and ensure that recipients are accountable for the money they receive. Governments on the other hand will have to be more accountable—not just on paper but on ground reality. Every country program wants to show on paper that they are doing a good job. But people like us who work in the field know that this is far from true. If there are, say, 85 patients and if I as a donor give you money to deal with them and if you do your job properly, then a year or two later I should not be seeing 185 cases. I should be seeing lesser number of cases. If I do not see this happening, I will no longer give the money. But if I continue to feed you despite your inactions, then it becomes a problem. So I think we need to educate the donors too about making recipients accountable for the money spent.”
How do we check the National TB Program (NTP) Managers to do their jobs?
Program managers and healthcare workers will have to become more accountable and committed towards their work as it involves human lives. When the patients walk long distances on unfriendly terrain—in the mud, in the heat—and reach the health centre, they are often asked to come back the next day. Or when they cough they are made to sit in a corner for hours together, and then the health centre closes by the time their turn comes. What do the patients do? I was following up a man in Cambodia who had TB and I asked him how come he was not recorded as a patient at the TB centre? He said he had gone to the centre three times but with no result. And now his son and daughter were coughing too and he could no longer travel 25 km to reach the health centre again. The only thing left for him was to stay at home and die. This is more or less the situation everywhere—in Vietnam, India, Indonesia, and Malaysia—and should be dealt with seriously.”
Should more commitments be realized from government representatives in conferences like this?
“I totally believe that. If I were the organizer of the conference I would do two things. Firstly I will make every NTP manager in the conference answerable in a meeting. I have been saying this for many years now that we should have one session, facilitated by community people like us, where all program managers are there along with the donors. The managers should be told about the ground reality and what needs to be done to improve the situation. In the next meeting they should report back on how they have improved the program in their respective countries. Secondly I would put up a list of the names of people who died of TB in different countries in the past one year and bring their faces and names to reality. When I simply see numbers it does nothing to me. But when I hear a name, then as a human being it should touch my heart. I say this again—put a face to the numbers, look at that face. Otherwise, people will keep on dying of tuberculosis, despite all the beautiful presentations made in the conferences and all the so called wonderful TB programmes.”
In spite of a grim situation, we need to continue to fight, and we need to continue to lend our voices presence to people that cannot reach out directly to such conferences. We need people, who can, to talk for people who cannot.
Shobha Shukla - CNS
(The author is the Managing Editor of Citizen News Service (CNS). She is currently providing on-site news coverage from 43rd Union World Conference on Lung Health, with kind support from the Lilly MDR TB Partnership and Global Alliance for TB Drug Development (TB Alliance). She is a J2J Fellow of National Press Foundation (NPF) USA. She received her editing training in Singapore, has worked earlier with State Planning Institute, UP and taught physics at India's prestigious Loreto Convent. She also authored a book on childhood TB (2012), co-authored a book (translated in three languages) "Voices from the field on childhood pneumonia" and a report on Hepatitis C and HIV treatment access issues in 2011. Email: firstname.lastname@example.org, website: http://www.citizen-news.org)
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