WORLD TB DAY: The Big Battle To Kill The Killer

India accounts for most TB deaths in the world, and the disease symptomises our biggest health challenge. As the Centre launches its most ambitious programme to eliminate TB by 2025, DNA looks at what all has gone wrong so far and the hurdles that lie ahead.

A case of XDR-TB - Too little too late?

Vaishali Shah looks oblivious of the outside hustle and bustle, as she sits quietly in the drawing room of her second-floor apartment in Thane’s Dombivali. The 38-year-old woman weighs only 30 kg. She was a completely different person three years ago when tuberculosis (TB) started eating her up — one cell at a time. The former teacher, now in skin and bones, tries to pace around a little. She has started heaving for oxygen. “It’s been four months. I have been confined to my second-floor apartment. Climbing up and down the stairs has become impossible,” she says.

Daily Capreomycin injection has caused nodules in her waist. Moxifloxacin, another antibiotic, temporarily affected her vision. She also suffers from itching. “I rub ice to reduce itching, but it numbs my skin. Sleep is a distant dream,” says an exhausted Vaishali. When she was healthy, she used to tutor neighbourhood kids and supplement her husband Samir’s income. He has spent Rs 6 lakh on her treatment. Oxygen cylinders alone cost Rs 4,000 a month — one-fifth of what he earns.  

Until three years ago, Vaishali was a successful teacher rendering tuitions to many neighbourhood kids. “She made close to Rs 7000 a month, to supplement my income which is about Rs 20,000,” says Samir. He works as a cashier in a local market nearby.

She cannot teach now, and the kids don’t come for fear of infection. She is afflicted with the deadly extensively drug-resistant (XDR) TB.

Vaishali and her husband Samir, out of desperation, have written to Prime Minister Narendra Modi, pleading to make the last resort drug - ‘Bedaquiline,’ available for her. She is afflicted with the deadly extensively-drug resistant (XDR) TB in which case her TB bug has stopped responding to almost all drugs used for treatment. 

Her tryst with government’s treatment system has been nightmarish. 

“Inspite of bad X-ray report showing cough in the chest on both sides, the doctor did not give proper treatment in Chatrapati Shivaji Hospital at Kalwa. After to and fro from state-run JJ Hospital to Kalyan-Dombivali Mahanagarpalika Hospital, the patient was finally asked to go to private-run Hinduja Hospital,” said Samir. “Sputum Culture reports were not being given to us and she was deprived of medicines for two months. Her infection spread from right lung to the left lung, her condition turned critical, she is finding it difficult to breath, she is on oxygen support and complete bed rest and  since has lost ten kilos of weight.”

“We see Amitabh Bacchan on the television voicing slogans like TB Haarega Desh Jeetega, but in government departments, proper treatment is not given, like seen in the advertisement,” states her letter to the PM. 

Attached with the letter is Annexure V dated February 8, 2018 - a crucial document, in which Dr Sameer Sarvankar, Chief TB Officer of Kalyan-Dombivili Municipal Corporation has requested Brihanmumbai Municipal Corporation (BMC)- run Sewri TB Hospital, one of Asia’s largest 1000-bedded facility, to initiate Vaishali on Bedaquiline. DNA accessed the document. 

Over a month since the referral, Vaishali has not been provided the drug at Sewri TB Hospital. “The doctors at Sewri told me we have run out of Bedaquiline,” Samir told DNA. 

Disillusioned with having to run pillar to post in government system, she is seeking treatment with Dr Zarir Udwadia, chest physician at private-run Hinduja Hospital in Mahim who has signed a prescription stating, “She must be given Bedaquiline, it is her only chance of a cure.”

Last week, Vaishali and Samir were sitting with Dr Udwadia and renowned American physician, TB expert and anthropologist Dr Paul Farmer who recommended the use of Bedaquiline in her case as did Indian government and private doctors. “I am stumped at why my wife is not being given access to the drug inspite of all doctors being on the same page,” said Samir. 

Currently, under the conditional access programme of the Indian government Bedaquiline imported from pharmaceutical company Janssen is being administered to close to 1000 patients in India. By central government’s own admission, over 2000 patients require the drug, though experts say that the number may be much more, close to 20,000 patients. There has been no official survey of how many patients need the drug, and it is supposed to be administered on a case-by-case basis of need. Even as there are 1.3 lakh estimated drug-resistant patients, Bedaquiline is not to be given to children, pregnant or lactating mothers, but what is heartbreaking is that even those who qualify for receiving drugs are not being given access. 

However, the current situation in India is so dismal that even if new patients that need Bedaquiline emerge, they are not being provided access to the drugs, said a senior official from Ministry of Health and Family Welfare (MoHFW). 

International NGO - Medicines Sans Frontiers (MSF) or ‘Doctors without Borders,’ which has been treating patients with Bedaquiline too, refused to take Vaishali on board. “After the government started procuring Bedaquiline, it has been difficult for us to procure it under the conditional access programme from Janssen,” an MSF official told DNA on the sidelines of Delhi End TB Summit, where Modi announced elimination of TB from India by 2025. 

Treatment of TB through Bedaquiline is expected to cost the government Rs 2 lakh per patient, after donation by pharma company weans away in 2019 Civil society has been pushing for India to issue compulsory license for Bedaquiline and Delamanid, which means that domestic pharma companies can go ahead and manufacture these drugs at a cheaper rate. “India can invoke CL clause in case of emergencies like this one where drugs are absolutely life saving,” said Leena Menghaney of MSF’s Access Campaign. 

However, MoHFW, sources say is under extreme pressure from US pharma lobbies to not let domestic manufacturers enter the market. “We call it maintaining bilateral ties with the US,” rebuts Arun Kumar Jha, MoHFW’s economic advisor.

Lonely battle

And there are many who die for want of rehabilitation after treatment. In July 2016, 44-year-old Rahima Sheikh looked jubilant at NGO Operation ASHA’s office in South Delhi’s Sarita Vihar. She was one of the 12 extremely drug-resistant (XXDR) TB cases documented by Dr Zarir Udwadia in The Lancet Journal in 2011. She held out her chest X-ray report that showed no hazy patches on her lungs. She had been cured, she said then. Her sputum tests were negative for TB.

But she died a lonely death a few months ago in her hut in Uttar Pradesh, ending her decade-long battle with the disease that symptomises India’s biggest health challenge. “She had grown very weak. The bacteria had damaged her lungs. No amount of drugs could repair them. She had started vomiting blood,” says her son Abdul.

When she died in her frugal hut in rural Uttar Pradesh, no one was by her side. Her husband had long abandoned her, she had said. Her two sons were working and studying away in other towns. Rahima had been on TB drugs for close to a decade including Bedaquiline, a year before her lonely death. About 4.23 lakh patients were estimated to have died in India in 2016.

Unlike cancer, tuberculosis has a massive stigma, as most people associate it with being a poor person’s disease. Dr Saurabh Rane, a former patient and a physiotherapist, who spoke at a recent TEDxGateway event in Mumbai, says, “Doctors must sensitise families and society. We need more individuals to speak up for the patient community. Survivors of tuberculosis can play a big role.”

Dr Ranjit Mankeshwar, senior associate professor, community medicine, JJ Hospital, says TB is caused by bacteria that most often affect the lungs, although they can affect other body parts as well. “The latter is non-contagious, but the lung variant of the disease spreads from person to person through air. When people with lung TB cough, sneeze or spit, they propel the TB germs into the air. A person needs to inhale only a few of these germs to become infected,” he says.

TB patients are usually prescribed six months of treatment, but do not always complete the course because of various barriers. Some patients feel better after a few weeks and stop medication, not knowing that they are not yet disease-free. For others, the side effects of the drugs are a deterrent to completing the course. Some lack family support, an important barrier on their road to recovery. Patients who let their treatment lapse are susceptible to developing drug-resistant TB, and it is important to support them to stop this from happening, Dr Rane says.

Completion of course

Karnataka Health Promotion Trust (KHPT), a not-for-profit organisation working in the area of public health, including TB prevention, care and support for the last 15 years, says that one of the biggest challenges faced by them is timely diagnosis of the disease and ensuring that patients complete their course of treatment.

KHPT is currently implementing a project called the Tuberculosis Health Action Learning Initiative (THALI), which is a patient-centred, family-focused TB prevention and care initiative that aims to facilitate access to quality TB services among vulnerable populations from health providers of the patient’s choice. “We aim to improve health seeking behaviours like testing and treatment adherence by vulnerable populations, including people living in urban slums and suffering from TB,” says a KHPT spokesperson says.

THALI runs a telephone-based patient support service staffed by a team of counsellors who provide emotional support to patients as they monitor their treatment, reminding them to take their medication on time. “It’s a challenge, as we have to follow up with a high number of patients, but the results from the Careline service show that the follow-up is effective in ensuring the family’s support and the patient’s adherence to TB medications,” the spokesperson says.

A future that hopes

In midst of denials, that stem from refusal to diagnose TB, 18-year-old Shagufta Parveen sits shyly, her small face hidden in a hijab, at the Directly Observed Therapy (DOTS) plus centre at All India Institute of Medical Sciences (AIIMS) in New Delhi.

Shagufta hails from Siwan district in Bihar. Doctors in her home town referred her to AIIMS, unable to pinpoint the cause of a lump near her throat. “It was later diagnosed as TB of the lymph nodes in AIIMS, only earlier this month,” said Shagufta. She, her brother and her mother had to undertake a journey of close to 950 kms to seek proper treatment. “It has been over a month in Delhi now, and I am still undergoing tests. Drugs have not even started,” said Shagufta, who had to drop out of Class XII in her hometown school to seek treatment. She is a student of Science. 

Shagufta and her family are clueless about the Rs 500 a month provision that Modi announced for all TB patients in lieu of compensation for wage loss and to seek nutrition support. “My father runs a furniture shop and earns barely Rs 40,000 a month. We have spent Rs 25,000 since we came to Delhi on treatment, lodging and boarding. We wait for hours outside AIIMS to catch a bus back to Shaheen Baug where we stay in a small room. I only wish people get better and quicker treatment. Life is hard,” she says blankly staring into space. 

Only last week, in the Delhi End TB Summit, Additional Secretary, MoHFW, Manoj Jhalani questioned the readiness of states across India to roll out the Rs 500 per month benefit for TB patients.

One of the biggest challenges faced by the government in rolling out the Rs 500 is that not all states have effectively completed Aadhaar linking for Direct Benefit Transfer (DBT). In Rajasthan, for example, only 20% patients’ Aadhaar cards have been linked, while in Uttar Pradesh, in not more than 41% cases has data of patients been seeded. States like Chhattisgarh and Himachal Pradesh are extending nutritional support in kind instead of cash. Issues like lack of human resources are also a challenge. “In Bihar, there is up to 52% vacancy,” said a state official in the meeting.

Mohan HL, KHPT’s managing trustee, says there are many factors which will underpin the success of this move in reducing the burden of TB, especially among vulnerable populations. “These include increased notification of patients to the national registry, strong patient monitoring and follow-up, an improved focus on patient-centric care, awareness campaigns for prevention, early detection and promotion of health seeking behaviour among vulnerable groups, a streamlined cash transfer system for TB patients and the capacity building of various stakeholders involved.”

In the very meeting, Jhalani said that 1,135 CB-NAAT machines used to test sputum samples of TB patients across districts were grossly under-utilized. Evidently so, Shagufta had travelled for over 14 hours across states to seek the right answers, which she had failed to receive in Bihar. 

Will India eliminate TB by 2025?

It’s not surprising then that of the 27.9 lakh patients estimated in India in 2016, only 19.38 lakh are notified. This means about 8.5 lakh patients do not have access to treatment. India’s aim of eliminating TB by 2025 means there should be less than one case, from the current 211, per 100,000 people, as per WHO.

WHO estimates that 1,47,000 patients in India were grappling with multi-drug resistant (MDR) TB in which the first-line drugs rifampicin, isoniazid, ethambutol and pyrazinamide do not work.   However, the government has recorded only  37,258 MDR-TB patients. This means that over a lakh such patients are going untreated.

The draft National Strategic Plan (2017-2025) to eliminate TB has asked for an ambitious Rs 16,649 crore until 2020 to tackle the scourge, a requirement of Rs 5,500 crore per year. In the 2018-19 Budget, the allocation for tackling of all communicable diseases is Rs 4,779 crore, less than what is expected to be received for TB alone, under the draft NSP proposal.

The incidence of TB has declined at 0.91 per cent per year over the past 24 years (from 216 to 167 per 1 lakh people). The global rate is 1.5 per cent. Going by the average rate of decline at present, India will be able to eliminate TB only in another 183 years, by 2197. If India were to eliminate TB by 2025, the rate of decline of cases needed is a drastic 21 per cent per year over eight years.

“Even if the decline rates are accelerated by some percentages, elimination of TB from the face of the earth is not expected before 2100,” says Dr Lucica Ditiu, executive director, Stop TB Partnership.