‘It is important to listen to, respect the patient’s voice’

Blessina Kumar

There has been an increasing number of MDR TB cases in India, which is more complicated to treat and takes longer than the usual six month treatment for drug susceptible TB. This becomes very complex for the patient and the provider with issues of adherence and severe side effects of the drugs. There is need for support and counselling to the patient in order to ensure treatment adherence and success.

The first thing that needs to be done is to acknowledge, whether in the private or public sector, that there is a huge problem (of MDR TB). You cannot keep hiding things under the carpet.

Secondly, just the RNTCP cannot address India’s MDR TB issue, it takes all stakeholders to come together and work together. More than 50 per cent of our patients go to the private sector for treatment. A major challenge is to ensure that the private sector is brought in, with some flexibility, so that both systems (the private as well as the public health care systems) can work together.

An understanding of what this would mean and how it would work at the ground level is crucial. If there is no connection and the two sectors work in parallel it is the patients who will suffer.

Thirdly, we have to realise that patients are not just recipients of care; they too have a voice. We need to respect and listen to that voice and ensure that this forms the basis of all our decisions. We tend to forget that at the end of the line there is actually a patient, who is being affected. We cannot dump rubbish on to a patient and expect the problem to be solved. Empowering patients is something that is really not looked at seriously in India. To be a TB patient in India is the most dis-empowering experience. Patients perspectives need to be respected and reflected into whatever we do.

How do we do this? That’s where patient representatives, patient advocates, health activists, civil society groups are becoming very important as they are much closer to the patient.