For decades, tackling tuberculosis has been more about protocols and less about the people it affects. The goals in the global TB strategy were simple: detect 70% of estimated cases, ensure at least 85% of them are on treatment and “compliant” through directly observed treatment or DOTS .
Decades later, it is clear that this approach has delivered limited results. TB, in its many shifting forms, has outsmarted us.
There is a growing realisation that protocols and compliance, while important, do not help understand the mindset or behaviour of those affected and their expectations from the health system.
Diagnosis and treatment are key but their success is dependent on how, and in what condition, they are delivered and whether they meet the expectations of those affected.
As a TB-endemic country, India needs to work harder on understanding why people get the disease, why detection is so challenging, and how their treatment journey and consequently adherence can be improved.
What also needs understanding is how stigma, mental health and poverty plague those affected by TB and how to address them. Perhaps most important is recognising that TB is both a social and an economic disease.
Few know that TB mortality declined in the West long before any medications were available. The peak of the TB epidemic in the 19th century was attributed to conditions that are still prevalent in India today: overcrowding, poor nutrition, now compounded by immunocompromising diseases such as diabetes that are rising in incidence.
The RATIONS study, or Reducing Activation of Tuberculosis by Improvement of Nutritional Status, published last year, enrolled 2,800 contacts of patients with active TB in Jharkhand and randomly allotted half of them to receive monthly food rations.
The risk of developing active pulmonary TB was reduced by 48% in this cohort of individuals with a high prevalence of malnutrition. Here is the simplest change that can be made – food security. The alleviation of hunger with nutritious food not only prevents active TB, it also arrests the chain of transmission.
On diagnosis, the presence of a cough that lasts for at least two weeks has always been thought to be necessary for testing for TB. However, a meta-analysis of 12 surveys from eight countries in Africa and four in Asia found that a majority of individuals with pulmonary TB did not report cough and this was more common among women.
This clearly shows that improving diagnosis requires better tools, possibly using artificial intelligence-based methods, integrating symptomatology and screening strategies to actively find those who are affected from subclinical disease, in their geographies.
Subclinical disease refers to there no outward symptoms of a disease, which can be detected through medical and laboratory tests. This is imperative if the aim is for early diagnosis and preventing transmission to close contacts.
Adherence to TB treatment has always been challenging, and patients have often been shamed and termed “defaulters” .
Is it that simple? Survivor testimonials and focus groups have highlighted the need for shortening the length of treatment (currently six months for drug-sensitive TB), improving access to free treatment, ongoing patient support, having a safety net while recovering from the disease.
Universally, those affected point to the need of making interactions with healthcare providers and caregivers devoid of stigma, and empowering, with joint decision-making.
Changing our status quo will require changing our standards of good care. Quality standards for TB care often focus on statistics but ignore the human aspects of the patient experience. This lacuna can lead to treatment strategies being disempowering and not person-centered. We need patients to be at the centre of policy-making and also listen to them for better programme design.
There is a two-month treatment strategy that has demonstrated success in drug-sensitive TB, and six-month strategy for drug-resistant TB, respectively, but neither is accessible in India presently.
Growing interest in TB research has led to a promising diagnostics and drug pipeline over the past two decades, but access remains the biggest challenge. The last year showed remarkable progress in access to drugs and diagnostics due to advocacy and activism. Access, however, has to be the responsibility of programmes – to ensure people get free, reliable, accurate and sensitive care that they need.
While the focus of progress in eradicating TB continues to revolve around protocolised diagnostic and treatment-based strategies, the last year has indicated that we need to focus equally on delivering high quality, people-centered care in a humane manner.
Treating those affected as without choices and agency is not just inhuman, it is counterproductive. Focusing on food, financial security, humane interactions and access to deliver high-quality care is as important as scientific developments. Investing in these are likely to yield better health-based outcomes that can help us mitigate this ancient scourge.
Dr Lancelot Pinto is at consultant pulmonologist and epidemiologist at Hinduja Hospital, Mumbai.