Until activists and patients question approaches to prevention, diagnosis and treatment, TB will continue to plague us

Tuberculosis in India is big: 2.3 million cases, 30,000 deaths, a million missing patients. These terrifying numbers remind us of a continuing crisis — when every TB death is preventable. Behind these numbers are innumerable unheard stories of human suffering — of misdiagnosis, inappropriate treatment and lack of access to care resulting in chronic illness and death. Why are these stories not heard? Because TB patients remain silent, disenfranchised, and find no platform to voice their issues. And they don’t have champions for their cause.

A complex interplay

Tuberculosis is not just a clinical issue. Its management requires the interplay of clinical medicine, social sciences, factors of equity and right to health. Ironically, this complex interplay is what prevents patients from accessing care early, which is vital to preventing deaths.

The patient-centred approach is supposed to be the hallmark of the DOTS system of delivery under the Revised National TB Control Programme, RNTCP, where the caregiver becomes entirely responsible for ensuring that the patient takes drugs regularly and completes the treatment. However, the programme has not factored in and adequately addressed a critical issue — a patient’s right to choose the provider. Closely linked to this is the issue of confidentiality, given the stigmatisation of TB patients in the community and by health providers themselves. In addition, the public health system has not taken into account the need for social and nutritional support. There are structural issues of delivery as well. TB control services are delivered through a vertical mechanism that is not integrated into primary health care delivery, which is the first point of care in public health services. This is why despite the RNTCP offering free diagnosis and treatment everywhere, patients prefer private providers.

More than 60 per cent of patients choose a provider from the private sector, most often the point of first contact. But here they have no protection against inaccurate testing or irrational prescriptions. Poor administration of drugs along with irrational prescriptions and unregulated sale of anti-TB drugs fuel the transmission of drug-resistant TB. Yet, the government seems disinclined to regulate the private sector.

The silence around these challenges is deafening. It is disturbing that even with such catastrophic impact, few TB patients and activists are empowered enough to question the quality of preventive and curative services that exist. However, until tough questions are asked both in the public and private sector, TB will continue to plague us.

There is an urgent need for activists and patients to speak up and question approaches to prevention, diagnosis and treatment. We need to question the purely clinical approaches. Within the public health system we also need to demand the inclusion of civil society in the planning and review of the anti-TB programme at the national, State and district levels. However, for all this, patients and activists need funding to build empowered communities.

From the private sector, activists must seek accountability in the areas of diagnosis and treatment. Also, serology-based testing for TB should be banned and mandatory notification of TB cases made compulsory.

There is a need to strengthen community engagement to ensure open participation, empower the patient, family and community with information and knowledge to speak out for their rights and for public health safety.

There are learnings from experiences in the fight against HIV/AIDS. Not only were patients empowered enough to question the credibility of health systems but they were an integral part of decision-making processes.

TB could affect anyone, irrespective of social or economic status as it spreads through the air we breathe. We need opinion leaders, concerned citizens and public figures to become champions in the fight against TB.

As a society and a community we are failing not only these patients but also ourselves by not demanding the rights of patients to high-quality care and management. Until everyone speaks out, and embarks on collective action to fight TB, India will continue to lose lives, and the missing million will not be accounted for.

(Dr. Nalini Krishnan is the Director of REACH, a non-governmental organisation working for care and support of TB patients in Tamil Nadu.

E-mail: nalinikrishnan@gmail.com)

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