Mumbai/New Delhi: As the high-level meeting on tuberculosis (TB) at the United Nations’ headquarters begins on September 22, the stakeholders will need to address a pressing issue: that patients in India – which has the highest burden of drug-resistant tuberculosis (DR-TB) – are facing an acute shortage of the necessary medicines. This is forcing many to skip their doses, a choice strongly discouraged in any tuberculosis elimination programme.
DR-TB patients are those for whom the first-line of TB drugs have not worked as the tuberculosis bacteria in them has become resistant. So, they are prescribed a more advanced line of treatment to kill the bacteria.
This is the second high-level UN meeting on TB. The first one was held in 2018. India’s health minister Mansukh Mandaviya, however, is not attending the meet this year.
The seat for a representative of India is empty at the UN high-level meeting on TB held in New York on September 22, 2023. Photo: Blessina Kumar/X(formerly Twitter).
Rajjab Ali Khan, a driver working with a private car pool company in Mumbai, wonders whether the UN meeting would lead to any immediate solution to his daily search for drugs for his DR-TB patient wife, Ruksana. She was diagnosed with the condition in the last week of August this year. She was prescribed three drugs – Cycloserine, Linezolid and Clofazimine – among others. Ever since her diagnosis, Khan has failed to get the three drugs from the DOTS (Directly Observed Therapy Short Course) centre where his wife is being treated.
Although he is a driver by profession, Khan’s daily routine does not anymore revolve around ferrying riders. He gets up in the morning, makes food for his bed-ridden wife and children, and leaves home in his quest to find the three drugs. He comes back a couple of hours later to clean the house and send the children to school. Then he again goes out to look for the much-needed therapy for his wife.
In the evening, he returns empty-handed, once again, and then starts making phone calls outside Mumbai, or even Maharashtra to see if the three drugs are available anywhere else. And, the cycle repeats day after day.
His daily earnings have come down to nil and savings have exhausted.
“When my wife was diagnosed with DR-TB, we were warned that skipping a meal or a dose would be equivalent to crime,” he told The Wire.
“Now, neither the government is able to provide me with the medicines, nor are they available at the medical stores. If my wife dies, who would be held responsible for this crime,” asked Khan. He lives in the slums of Mumbai’s Antop Hill area.
Many others such as Khan shared a similar ordeal in their search for the essential medicines to treat DR-TB.
For this story, The Wire spoke to the family members of several other patients, the people and communities working with TB patients, and the concerned officials in Delhi, Maharashtra, Odisha, Jharkhand, Bihar and Uttar Pradesh. All of them provided numerous testimonies to the dire situation.
Also read: As PM Modi’s TB Deadline Looms, Govt Must Know That Not Counting Isn’t an Option
No help from the government facilities
The World Health Organisation (WHO) is equally “concerned”. WHO’s teams have gone to at least four states in India to assess the ground situation.
“The assessment is still going on,” Tereza Kasaeva, director of WHO’s Global TB Programme, told The Wire, in response to a query asked at a virtual presser held a day before the UN meeting. She didn’t share the findings or names of the states but said that the assessment is still ongoing.
In mid-September, while replying to an email, which was sent by a volunteer who works for TB control, Kasaeva had written, “We at WHO — across three levels — are also deeply concerned and closely following the situation with TB drug stockout”, while speaking about “systemic issues” leading to “periodic stockouts”. The Wire has seen a copy of this mail.
In a similar tone, Lucica Ditiu, executive director of ‘Stop TB Partnership’, had described the situation as “worrying”, and said that her programme had been in touch with India’s Ministry of Health and other related agencies of the country, too.
Stop TB Partnership is an entity hosted by the UN that comprises multilateral agencies, governments, civil society, and others. India’s health minister, Mansukh Mandaviya, is currently its chair.
India, as declared by Prime Minister Narendra Modi, aims to eliminate TB by 2025 – five years prior to the WHO goal of 2030.
“TB is a disease that is very unforgiving to any irregularities in the drug schedule or dosing. It’s like a card house which can topple over if one is careless,” Dr. Zarir F. Udwadia, a consultant pulmonologist with Mumbai’s Hinduja Hospital, told The Wire. In simple words, missing a dose can lead to worsening of the disease, as the bacteria would become resistant to the drugs being administered. It can even lead to death.
Like Khan, Naushad Ali, who lives in the same area, is worried about his 18-year-old daughter, who has covered a major part of her treatment journey for DR-TB with just about one month left. Naushad has already lost his wife to TB and has just finished the treatment course of another daughter who has recovered from the deadly disease. His son works with a private meal delivery company and is the sole earning member.
“To whichever area of Mumbai he goes, I ask him to enquire at the medical stores located there. So far, to no avail. The DOTS centre, where my daughter goes, has no drugs available,” he told The Wire.
The difference between these two patients is that while Khan’s wife is in the initial phase of the treatment, Naushad’s daughter is in the last. But both are at risk.
“In the initial or the “intensive phase” – as it is called – the patient has to become non-infective (preventing transmission to other members) and test negative for the bacteria,” explained a Karnataka-based doctor, who has an experience of over three decades working with TB patients and undertaking many trials. He has also been a member of India’s TB committees. He didn’t wish to be named so that his ongoing trials are not impacted.
In Mumbai’s slums, where people like Khan and Ali live in overcrowded spaces, transmission of infection to healthy people is very much a reality.
On the other hand, Naushad’s daughter, who is towards the end of her treatment now, faces a risk of relapse of the disease, which is not uncommon.
In Odisha’s Khundi village of Khorda district, Geetanjali Pradhan, whose father-in-law is a DR-TB patient, has been forced to buy the drugs out of her own pocket. This is because in her neighbouring village, a TB patient died after he discontinued taking medicines due to a stock-out situation. In a week, she had spent Rs 4,000. “What was the use of visiting the tuberculosis unit (TU) when on multiple visits we would be given medicines only for three days or a week – that too on an irregular basis,” she asked.
Bijayalaxmi Rautaray works with a civil society organisation, called ‘Sahyog’, in Odisha. She said that Cycloserine is not available in most of the government facilities. And poor people cannot afford to buy it from the private market. One strip of Cycloserine, which contains ten tablets, of which three are to be consumed daily, costs Rs 400.
In Bihar, Sudeshwar Kumar Singh, wrote a letter to the state government on September 8, saying that the three drugs were not available at the government facilities and the patients were forced to buy drugs from medical stores. Sudeshwar is also a member of India’s Country Coordinating Mechanism (CCM), formed by the Government of India to tackle TB.
Along with the letter, he sent a collage of the receipts of purchase from the private market. The receipts ranged from Rs 300 to Rs 4,094. He told The Wire on September 20 that this situation had not improved.
Singh, being a member of the CCM, had written to Union health secretary Sudansh Pant and top officials of India’s National TB Elimination Programme on September 6.
“Several essential DR-TB medicines are continuously out of stock across the country for the last one and a half years, as confirmed by the digital platform “Nikshay Aushadhi”…Sadly, some PWTB [people living with TB] are forced to buy these medicines from private medical stores, causing severe economic hardships, loss of employment opportunities and malnutrition,” his letter said. The letter he sent was not replied to.
Singh explained that the intermittent shortages started from last year, but since June the situation has deteriorated. He was not the only person who had written to the government. Mumbai-based Ganesh Acharaya, a TB survivor, who also works with TB networks, had written to Union health minister Mansukh Mandaviya on August 29.
“Since June 2023, there have been regular reports of stockouts of drugs used to treat TB and MDR- TB in several DOTS & DOTS-Plus Centres across the country,” his letter said.
“The persistent shortages have affected both first- and second-line TB drugs, including paediatric formulations. A list of drugs that have been out of stock for the last two months is depicted herein in tabular form: Moxifloxacin(Lfx), Cycloserine(Cs), Linezolid, Clofazamine Pyridoxine, Delamanid FGD-1st line,” his letter read. It also talked about the financial burden on people and its spillover effects.
The letter was endorsed by several civil society groups. He confirmed to The Wire that even his letter wasn’t replied to.
Also read: The Threat of New Strains of Tuberculosis
A lack of mechanism for medicine procurement process
After receiving several reports from patients, state officials, and civil society groups, the Union government asked the state governments to procure drugs on their own from April this year.
Bihar State TB control officer B.K. Mishra said the directive came “almost, all of a sudden.”
“We never procured TB drugs before because we never felt the need for it [as the Union government used to supply it earlier],” he told The Wire.
“We have placed an order with the company concerned for Cycloserine. But there is a delay in the supply…we are regularly following up with the company,” he added.
Mishra also said that the districts have been directed to purchase the drugs from the local medical stores but that is also fraught with uncertainties. “We are not sure about the quality of drugs available with the medical stores. And now, if we enter into the domain of prequalification [testing before supply], it would lead to further delay,” he said.
Another state TB officer from one of the states listed above described the situation as “frustrating”.
“My hands are tied in terms of the maximum amount of medicines I can purchase. If I have to go beyond that limit, the file has to move several desks, which obviously means further delay in procurement and supply,” the officer added. The officer didn’t want to be named as he wasn’t authorised to speak to the media.
“Telling states that you have to buy and washing your hands off isn’t the solution because there is no mechanism,” says Blessina Kumar who is associated with Global Coalition of TB Activists – an international platform for TB advocates.
“You have to tell the states from where the money will come from, from whom to buy, how the prequalification of drugs is to be done, etc.,” she added.
Ganesh Acharya, a TB survivor, quoted above, also pointed out in his letter that there are potential flaws and problems in the state procurement process.
“Decentralised procurement of this kind is especially challenging for states with a smaller number of TB-affected people, limiting their power to negotiate on quantity, price, and delivery timelines,” it read.
Also read: ‘Incompatible With Life’, TB Patients Struggle With Modi Government’s Policy on Nutrition
A worrying scenario
“Had the decentralisation properly kicked off, I wouldn’t have been forced to make a representation to the state TB officer,” said Jharkhand’s Khageshwar Kumar. He is based in the state’s Koderma district. He is a treasurer of the TB Elimination Jharkhand Network. His inquiry with his field staff and concerned district TB officers revealed that Cycloserine had run out of stock in at least two districts of the state – Koderma and East Singhbhum. For Sahebganj district, the drugs were borrowed from Dumka district, he told The Wire on September 21.
In UP’s Balrampur district, the officials on September 20 were holding a meeting and asking the health officers down to the level of panchayat to accelerate the process of local procurement.
Sehjad Ahmad, a member of a civil society group, who also participated in the meeting, told The Wire that local officials are facing issues about allocating budget because they don’t know which portion of the budget should be used for the purchase.
The civil society groups in Uttar Pradesh have created a google sheet to update the stock-out position. Till September 20, at least four districts – Balrampur, Sravasti, Siddharthnagar and Chitrakoot – reported that they had no drugs available, according to Ahmad.
Meanwhile, the doctors are deeply worried. “We are back to the pre-2008 scenario,” said the Karnataka-based doctor, adding, “as it was an era when people in India hardly thought about drug-resistant TB patients.”
“People may be dying, or have already died. Somebody, somewhere, in the [government] system, has really messed up,” he said.
The Wire had sent a set of questions to the Union health ministry, including one that asked for a timeline regarding the government’s expectations for when the situation would improve. The ministry has not responded to the questions till the time of going to press.
However, responding to The Wire’s query at the September 21 presser, WHO’s Kasaeva said, “We hope, because we’re working closely with the government and partners, that this unfortunate situation will be sorted out quite soon, as we’ve been promised, and hopefully by the end of this month, beginning of the next.”
Doctors and individuals within TB communities are concerned about whether the tenders have been placed. They anticipate a significant time lag before the drugs reach health facilities and patients.
“Patients have already experienced drug shortages. Even if the buying process has started, it will not be till mid-October or perhaps even later that the supply becomes normal,” said Blessina.
Patients, meanwhile, are completely clueless. “Desh TB-mukt nahi hoga, aadmi mukt ho jayega 2025 se pehle [TB will not be eliminated before 2025 from this country but patients will be],” wrote a patient to this correspondent on September 21.