"Nothing for us without us"

"Nothing for Us without Us" was said by an activist friend from Africa at one of the conferences. Another World TB Day (WTBD) has come and gone and this time Delhi was abuzz with events more than ever before. A media awards function honouring journalists from different parts of the country. An art exhibition on TB, definitely the first; a gathering at the Red fort and a street play by students on multidrug-resistant TB (MDR-TB) accompanying the release of TB 2011 report by WHO (SEARO) and Bill Gates visiting the TB Hospital for a closed door exclusive meeting.

In all this excitement something was missing. Patients, patient representatives and community members. The media event, a really nice show, had several dignitaries seated on the dais. Ministers, Government officials, heads of the organizations, among others. Not one TB patient. The jury for the awards, all eminent people but no patients or patient representatives.

How much nicer would it have been if a patient /cured patient was on the dais speaking from experience about the media and how it could help. I agree that it was important to hear one of the senior-most government officials and other representatives from NGOs. But all of them spoke of the patient as a mere recipient of care and treatment. A view that is very common in India. Only the Chair and Board member of the TB NGO uttered the word 'community'.

Bill Gates, too, was here in New Delhi on the WTBD and met with ministers and visited a TB hospital and left. He heard the ministers and the policy makers but not the patient's perspective. All efforts to contact the Bill and Melinda Gates Foundation (BMGF) here in Delhi were in vain. They did not bother to either return the calls or reply to SMS requesting for a short meeting. Yet BMGF has pushed the community into the forefront on their AIDS initiative. Would Gates have missed the community on World AIDS Day?

As long as we see patients and communities as mere recipients, powerless and dependent there will never be empowerment. We talk of empowering communities without really understanding what it really means. I have heard a lot of excuses in the past and continue to hear them, whenever I raise the lack of effective engagement with the community and patients. 'They don't want to be seen as patients for life'; 'They are not articulate enough to speak to a large group'; 'We do not have resources', so the litany goes. None of these are valid because there are many who can and will talk. My co-activists and I have been speaking for the past 4 years. The planners need to plan for empowering patient representatives and investing in training them to speak. The HIV community has done it and with a small amount. And look at the results! When will we learn that involving the patient is beneficial and cost effective in the long run?

Today most of those working for TB are discriminating against the patients and communities by keeping them away from most forums and opportunities where they could make their voices heard. Patients and communities have a right to be part of the decisions that are being made that will affect our lives.

It is time for TB to learn from the HIV movement which gave marginalized and stigmatized groups respect and brought them into the mainstream. Why do we lack the will to do the same and keep making excuses for ourselves?

A top heavy vertical bureaucratic programme and civil society will never be able to empower patients and communities. At a recent dissemination of an evaluation for a TB ACSM project, the evaluator said 'the biggest failure of this programme is the inability to involve patient groups.'

It's time to wake up and see the reality. People are dying in the thousands, more than from AIDS. We need to join hands and not just with the ministers and directors and MD's but also with the marginalized and neglected groups, patients and patient representatives, with those who are suffering and in pain. After all that's what it's all about.

Only through true partnerships can a world without TB become a reality.

Blessina Kumar
(The author is a senior TB activist and serves as a Vice Chair of the Stop TB Partnership) 

Published in:
Citizen News Service (CNS), India/Thailand 
Elites TV News, USA
 CNS Stop-TB Initiative 
Wikionews.com, UK
World Care Council