JOIN USPatients and survivors provide us with the most effective tools in our fight against any disease.
The story of Deepti, a 33-year-old Tuberculosis (TB) survivor and one of India’s bravest TB advocates is one such example. She battled TB for six years surviving two surgeries. Her story, one of continued misdiagnosis and incorrect treatment, is a reminder of how, despite the availability of best technologies, we continue to fail the TB patient even today.
A decade ago, India was a world-renowned leader in global TB control. Its innovative and effective scale up of directly observed treatment short course (DOTS) was legendary. It saved millions of lives and provided hope to the country’s vulnerable populations. But today, despite these numerous achievements, India’s TB burden remains far too high, and is increasingly recognised as one of its severest health crises.
India has gone from representing an exceptional model of TB control to one of the world’s greatest TB control challenges. TB kills close to 3,00,000 Indians each year and almost a thousand everyday. It primarily affects those aged between 15 and 55. This results in reduced productivity and wages, and increased healthcare spending. The total TB costs to India are pegged close to a staggering $23.7 billion. For a rising economic superpower on the global stage, this alone should be a serious cause for concern.
The recent rise of multi-drug resistant TB (MDR TB) presents a new and difficult challenge. Drug resistance occurs when a patient grows resistant or unresponsive to one or more TB drugs. The MDR TB is not only harder to diagnose but also more expensive to treat, with poorer outcomes. India is estimated to have close to 1,00,000 MDR TB patients, most of whom remain undiagnosed and hence untreated. Consequently, this fuels transmission, increasing the burden of MDR TB.
To address TB comprehensively, India must recast its appr-oach to the silent epidemic and confront it on multiple fronts simultaneously. It needs to create a multi-stakeholder approach to addressing TB, better understand patient needs, improve quality of care and engage its vast unregulated private sector in its fight against this disease.
It’s well known that those most vulnerable to TB are among the most poor and disempowered communities. Yet, numerous studies have revealed that they are nonetheless discriminating consumers who value quality health services. Patients don’t just need free care, they need quality care delivered with dignity.
This includes accurate and early diagnosis, suitable counselling, flexible systems to access treatment and continuous support. Hence, India’s public sector must consider examples of community-based solutions such as family DOTS where a trusted family member can provide treatment and monitor patient progress.
Issues of stigma
However, before this can be undertaken, communities must be empowered to address issues of stigma with knowledge and empathy. Too often, we read repor-ts of suicides among TB patients and hospital morgues containing the bodies of TB patients abandoned by their families. For poorer patients, it’s also important to consider social and economic support such as food subsidies or economic stipends to help them during treatment when they cannot work.
India must also more closely involve its private healthcare sector. Today, patients seeking care in the private sector are often exploited, and accurate diag-nosis and appropriate treatment is not easily available to them. Yet these providers treat close to 50% of all TB cases in India.
If engaged effectively, India’s vast private sector could be a transformative ally. The country cannot defeat TB unless patients in the private sector are assured early and accurate diagnosis. This is the only way to curb tran-smission and reduce new cases.
There are numerous experiments underway that can provide insights into strategies for effective private sector engagement. The most important is a government willing to be flexible and to engage them as equal partners. As a technology hub, India must also look at the innovative use of technologies to ensure better engagement with the private sector and improved quality of care for patients.
But none of this will be possible unless India understands the urgency of beating TB. Not only is this crucial for effective policy, but it is also vital for resource allocation. To do this, patients must occupy the centre stage in advocacy efforts and demand accountability. Only a patient-led movement can make key decision makers understand that India is at a critical point in its fight against TB.
(The writer is Executive Director, International Union Against Tuberculosis and Lung Disease)