Community voices key to combat TB

Recently, the Union government launched a Tuberculosis-free India campaign under the National Strategic Plan to eliminate tuberculosis (TB) by 2025, five years ahead of the global target. This is a welcome step and an encouraging sign for all TB control campaigners across the globe as we prepare for the United Nations High-Level Meeting on TB later this year.

Ending TB in India is a real possibility, but it will require a combined effort between national and state governments, and communities.

TB disproportionately impacts the poorest and most marginalised sections of the society. In 2016, the disease killed 4,32,000 people in India, making it the world leader in TB-related deaths. Indians living in absolute poverty, who lack infrastructure or live in remote areas, are often deprived of quality healthcare. This increases the likelihood of a person infected with TB going undiagnosed, unreported and untreated.

In 2012, The International Union Against Tuberculosis and Lung Disease (The Union) initiated the Stream Clinical Trial to address the challenges posed by increasing number of multi-drug-resistant (MDR) TB cases. Gruelling two-year treatment courses leave many patients struggling to endure the complete regimen, consuming a total average of 14,000 pills.

The sheer logistics of ensuring an adequate supply and efficient distribution of drugs present a high barrier to reliable treatment, sometimes resulting in serious permanent side-effects, including deafness. A lack of access to primary healthcare — and unregulated private healthcare — present additional hurdles for TB patients.

Over the last five years, the government has made significant gains against the rise of MDR-TB through several new initiatives. These include a scale-up and expansion of drug-resistant TB services to achieve nation-wide coverage; revised guidelines that help tailor patients’ regimens taking into account drug sensitivities; and roll-out of a programme to enhance access to newer drugs.

In December 2017, India screened the first patient for Stream stage 2, which seeks to garner evidence and assess the success of a shorter MDR-TB treatment regimen, including an all-oral treatment option. India is the first country from the WHO’s South East Asia Region to join the trial.

Progress to-date has been positive. But to ensure Stream trial’s success, Vital Strategies and our partners have made community engagement a cornerstone of the programme. We know community-led interventions can help motivate public health workers, and that success stories can encourage patients and their communities to become advocates for effective TB control programmes.

In India, for example, we’ve created Community Advisory Boards in areas that have never hosted a clinical trial of this scope before. Members play a vital role in identifying challenges, suggesting solutions, planning, and ensuring optimal research implementation.

Our Community Engagement Plan involves clinical researchers, local stakeholders (from health professionals to TB/HIV activists), programme managers, and outlines the necessary steps needed to engage at-risk communities. It also helps members understand the opportunities the clinical trial offers to improve quality of care.

In the search for a shorter regimen, these community voices are critical, creating an opportunity for communication and cooperation among everyone directly involved with or affected by this trial. Local communities can be actively involved in the study, and help maximise the benefits gained while giving researchers a first-hand account, and a deeper perspective, on how local health systems function in the places we work.

Community engagement means people will have a better understanding of what we are doing, how it affects them, and why it matters in their neighbourhood. It also builds sustainable partnerships, and provides legitimacy to the Stream trial’s goals and objectives. After the clinical trial concludes, patients can become living proof of the benefits of this shorter regimen.

If our plans are successful, we will raise the level of participation among stakeholders to identify and address issues and concerns. This is well-aligned with the Union government’s National Strategic Plan, which highlights community engagement as a crucial element to tackling TB by 2025.

There are no stronger advocates for TB than those affected by it. The government and communities must take up the charge for improved diagnosis and a more humane treatment regimen.

(The writer is President and CEO, Vital Strategies and Executive Director, The International Union Against Tuberculosis and Lung Disease)