By Dr. Prabhu Desai:
As a physician, I witness several heart-wrenching stories everyday. Saurabh’s story, though, is an eye opener – challenging, but with a light at the end of the tunnel.
Twenty-one-year-old Saurabh was young, energetic and ambitious. An enthusiastic medical student – he had just cleared his final physiotherapy exam, and was working in a hospital. A fitness freak, he began losing weight and appetite. Tests revealed a scary diagnosis – pulmonary tuberculosis (TB).
Despite starting treatment with the first line of drugs, his condition showed little improvement. He came to me after months of treatment. I recall diagnosing him as a borderline case of extensively drug-resistant (XDR) TB – a form of TB that is more dangerous and harder to diagnose and treat. It took two and half years of painful treatment, before he was cured. All this came at a considerable cost. I watched Saurabh fight TB, with support from family and friends. Today, Saurabh is cured – but not all my patients are this lucky.
There are thousands of young people whose lives are destroyed by TB, therefore, making it India’s public-health nightmare. The recent World Health Organisation (WHO) Global TB Report states that there are an estimated 2.8 million TB cases in India. Tuberculosis is an airborne and contagious disease, and is fatal if left untreated. Drug resistant TB, however, is more dangerous, and has a 60% to 70% survival rate even with best medical services. We are all at risk. Yet, TB remains neglected.
Tuberculosis doesn’t only cause human suffering – it also leads to death and poverty. A drug resistant (DR) TB patient spends around ₹2 lakh to ₹4 lakh for treatment. If there’s a need for surgery, then the cost increases by ₹5 lakh or ₹7 lakh. We are seeing an increasing number of DR-TB cases in India, particularly in metropolitan areas. Mumbai, India’s business centre, has one of the highest numbers of DR-TB patients. In crowded slums, buses and trains – TB is everywhere!
What we see in Mumbai, today, is just the tip of an iceberg. There are so many undiagnosed, untreated, partially-treated cases of TB, even latent TB (potential TB) cases, lurking around.
Why should India fear TB? It is because the disease is destroying our people – especially the young. Also we don’t know how to control it. The treatment of TB is long drawn, often expensive and has many adverse reactions. The patient suffers, as does the family and the country.
How can India address TB? Tackling any disease requires awareness, team work and prevention. The government, the healthcare system, the social support systems and the corporate world need to work in tandem.
The government is doing a good job in providing better, cheaper diagnostics, and free medication. They are also providing assistance to poor patients in some states. This, however, is unlikely to solve India’s TB crisis.
Tuberculosis spreads unknowingly, and one act of coughing can potentially infect numerous others. Even if the best of drugs, diagnostics, dedicated doctors are able to cure patients suffering from DR-TB, they would have already infected so many others. Hence, the key lies in its prevention.
Prevention begins with awareness and understanding of the disease at an individual and community level. An aware TB-infected person and family would understand the importance of treatment and prevention – and thereby, ensure that no one else gets infected. Healthcare providers have to take time to explain this to those infected by TB. Community education and awareness are needed, as are multimedia awareness campaigns.
The public and private sectors needed to work together to ensure that TB patients get the right diagnostics and treatment, at affordable costs. The private sector must ensure the rational use of drugs and diagnostics. It has to be stressed again that the answer to reducing DR-TB is preventing it. Hence, both the players must work together to ensure this.
We often forget that even when they are infected by TB, individuals need to work or complete their educational qualifications. They are often bread winners, and therefore, fear losing employment. Stigma makes a TB patient hide their disease from society. Many stop treatment, because of the adverse side-effects and loss of income.
The answers lie in reducing the stigma, and having more ‘compassionate’ systems of education and employment in place. If employers assure job security to their employees, and the government creates economic support programs – more TB patients will be able fight TB fearlessly. Considering how widespread TB is, employers should have workplace policies centred around TB.
Perhaps, the need of the hour is to set up ‘TB cells’, call-centres and helplines, where trained personnel can monitor, counsel and reassure the patients. It’s equally important to provide support during financial and medical emergencies. Otherwise, the high costs often force patients to turn to unqualified practitioners, and thus, remain uncured. The possibility of others getting infected remains high in such a scenario.
Perhaps, the earlier method of having sanatoriums could provide an answer. Setting up sanatoriums, and looking after TB patients till they are completely cured and disease free, could prevent the ongoing TB epidemic in India.
One has to see these patients to understand their suffering, and the hopelessness and agony that TB brings. It’s a bigger threat than any that India has ever faced. It’s time we responded in earnest!
The author is a leading chest physician, based in Mumbai. He practises at Lilavati Hospital and Guru Nanak Hospital.