“When a virus (HIV) and a bacteria (TB) can work so well together, why can’t we?”
— Michel Sidibe

Tuberculosis is an epidemic. According to the World Health Organisation, nearly two million people in India suffer from TB, of which 64,000 cases are estimated to emerge annually as drug resistant. This is a TB disease type that shows no response to the first line anti-TB drugs used to cure TB. It develops when the TB drug regimen is poorly administered, or when patients stop taking their medicines before the disease has been fully treated. While the National TB Programme has been immensely successful in correct diagnosis and effective treatment via Directly Observed Treatment, Short Course (DOTS) across the country, the private sector continues to “prescribe incorrect and misleading tests for TB diagnosis”. On the other hand, owing to an unregulated management of the disease and over-the-counter sale of drugs, a vicious cycle entraps the patient leading to drug resistance. What we require is a far more nuanced and multi-pronged approach involving the community at many levels to fight TB.
Community engagement is a rights-and-responsibility based set of programmes to involve and empower the affected and the marginalised. In the case of fighting a dreaded disease, the need for people’s involvement is acute. A glimpse at the success over HIV/AIDS prevention and control in the recent past is enough to underline the relevance of efforts beyond diagnose/cure models that do not take into account the intricacies of health crises. These may include unethical practices that run parallel to government programmes and cause hindrance besides the socio-cultural implications. It was simply not enough to amplify media messages and distribute condoms. In the case of hijra and transgender community, a certain culture of interceded awareness emerged that integrated gender and sexuality, infection, discrimination and other lived aspects. To take a small example, an organisation like Sahodari Foundation in Tamil Nadu has made efforts to not only work on transgender identity issues but also to sensitise medical professionals to the specific problems of transgender patients. Humsafar Trust in Mumbai has mapped the matrix of varied high-risk groups that oscillate between gender and sexual boundaries and may be hard to categorise and document officially. These initiatives are successful and helped bring down rates of infection because they are context-bound and mindful of human dignity. NGOs and other establishments with their individual volunteers would form a highly motivated network of the affected and the concerned, ideally informed of the dynamics unseen. There are plenty of such examples across the nation.
Unfortunately, community engagement in TB is practically non-existent. For instance, the reason why multi-drug resistant TB (MDR-TB) has emerged as a threat is that there is no support system available to prevent or vouch for misdiagnosis, unregulated dosage or negligence. A patient of drug resistant TB who has to take several combinations of drugs and additional ones to fight the severe side-effects over a long duration (18-24 months) is most likely to abandon his/her treatment. There is absolutely no formal participation from the civil society as an alternative body to raise the patient’s morale or ensure that the prescribed dosage is maintained. Advocacy at this fundamental level is not something we like to think of. The stigma continues to thrive, as well. Is it because TB has been around for so long that we have simply not weighed its dangerous potential?
The highly contagious disease is indeed feared and those infected are demonised, but the fact remains that we do not have efficacious systems working for the cause at the grassroots. We cannot blame lack of funds or expertise either. The Revised National TB Control Programme has a budget of `710.15 crore for 2012-2013, and claims 70 per cent case detection and 85 per cent cure on smear positive patients. Not to mention the undertaking of over 13.5 million treatments and technological scale up in laboratories. Despite these achievements MDR-TB and extensively drug-resistant tuberculosis (XDR-TB) is on a dramatic rise. Lack of infrastructure, which is essential to render health services, remains a critical challenge.
A holistic approach lies in a route similar to advocacy behind HIV/AIDS. Call it the well-documented ruthlessness of the virus or the collective trauma that still throbs and surrounds it like a halo, HIV/AIDS has led to many sobering realisations for the medical practice. In the least, a reshuffling of paradigms in medicine as an organisation and its related governing policies. In reaction to the terrible taboo that emerged, community engagement and its demand for reasonable solutions helped shift the focus towards treatment. As a result, Indian pharmaceutical companies, like Cipla, became the leading manufacturers and suppliers of generic but quality-assured anti-retroviral drugs to developing nations at low prices that can be distributed to the most underprivileged of patients by NGOs or government facilities. Why are such lessons not being migrated into addressing the TB epidemic?
TB activism needs to aim for universal access and maintenance of treatment. Community engagement here would play a key role by localised action through shadow reports and watchdog action against quacks and unregulated sale of Schedule-H drugs. It is important to experiment with manageably minuscule yet innovative approaches to spread awareness and create cultural products to stimulate everyday dialogue in high-risk groups as well as other seemingly unaffected spheres of society. The public and private sector in turn can facilitate the mobilisation of the community and development of leadership within. This can be achieved through redirecting part of its funds and recognising the possibility of creating a representation that cannot be ignored.
In the least, community engagement is community building. It is a conscious and uneven process. The socio-political implications of the struggle over TB will perhaps be found in a patchy growth of awareness, forged alliances between organisations and patients and, hopefully, prevention and control.

(March 24 was World TB Day)

The writer is director, Resource group for Education and Advocacy for Community Health (Reach), Chennai