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'Distressed & Disturbed': TB Patients' SOS Messages as Govt Denies Drug Shortage

"We are disappointed to see this message (from MoHFW) that's completely in denial of the reality on the ground."

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Hindi Female

Kavita (name changed), who is in her thirties, was diagnosed with Multi-Drug Resistant Tuberculosis (MDR-TB) on 25 August. On paper, her treatment started the same day. But getting the medicines that she needs from government facilities in Mumbai has been an uphill battle, says her husband.

"The health workers ask us to not miss medication. But the Directly Observed Therapy Shortcourse (DOTS) centres are saying they don't have any more tablets left to give," her husband Suresh (name changed) tells FIT.

"So far we have only got 32 tablets of Cycloserine, enough to last her just over 10 days. If something happens to the patient, who will be responsible?" he asks.

Kavita is one of hundreds of MDR-TB patients reeling from a shortage of certain essential drugs in India.
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“I have never seen a situation like this before," Ganesh Acharya, a TB/HIV survivor and activist, based in Mumbai, told FIT.

While activists, healthcare workers and patients have been speaking out about the shortage of TB drugs since July, they've received little respite.

"It's like a passing the parcel situation now. The accountability has to come from all three — local, state and central — levels," he adds.

'No Drug Shortage': Health Ministry's Claim & the TB Community's Response

On 26 September, the Ministry of Health and Family Welfare released a statement saying reports alleging a shortage of anti-TB drugs in India are "vague" and "ill-informed."

The press release stated, 'in rare situations', some states were requested to procure some drugs locally for a limited period. "There is no shortage of anti-TB drugs in the field," it says.

"Significant efforts have been made to ensure the availability of these essential anti TB drugs. Regular assessments are conducted to evaluate the stock positions at various levels, from central warehouses to peripheral health institutes."
Ministry of Health and Family Welfare Statement

TB patients and activists have, however, expressed concern over this response.

“We are disappointed to see this kind of a message from the ministry. It is completely in denial of the reality on the ground which is making people really struggle and suffer," says Blessina Kumar, CEO, Global Coalition of TB Advocates.

Five advocacy groups for TB patients in India – TB Mukth Vahini, ARK Foundation, Global Coalition of TB Advocates, Rainbow TB Forum, and Touched by TB – released a joint statement on 26 September evening, responding to the press release.

"STOs (State Tuberculosis Officers) and other doctors are struggling to put a regimen together for treating DR-TB...In recent times, up until today, we have been inundated with distressing appeals from patients, relatives and doctors alike who are grappling with difficulties in obtaining TB medications."
Joint statement

"It is disheartening to see the recent communication from the MoHFW, which seems to disregard the very real struggles and suffering endured by the people on the ground," reads the statement.

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SOS: Voices From the Ground

Khasim Sayyad, Program Manager at TB Alert India (TBAI), says, "In Delhi, out of seven drugs, we are only able to give four to five drugs properly. Two of them, Cycloserine and Linezolid are coming in erratically. It's completely disorganised."

Kritika, a 23-year-old TB patient from Mumbai says she experienced this drug shortage first-hand.

"I was diagnosed with drug-resistant TB (DRTB) in 2022. I get my medication from a Brihanmumbai Municipal Corporation (BMC) health centre. For the last two months, the centres have been saying they have a shortage of Cycloserine and Linezolid. They kept sending me away, saying 'buy it from a medical store this time,' and 'come after a week', over and over again."

While they are provided free of charge at government facilities, a strip of Cycloserine and Linezolid tablets in Mumbai gnerally costs around Rs 350. One strip consists of six tablets, which lasts two days.

Dipendu, a TB survivor associated with Survivors Against TB (SATB), says he's been getting distress calls from parts of West Bengal too.

"Mid-August, one person contacted me from Diamond Harbour said they were searching for Cycloserin but couldn't find it in any government health centre," says Dipendu, adding, "They were able to buy it at the time from private for around Rs 500."

"This was the first encounter I came across, but soon, through community networks, I found out it was not just happening here, but everywhere," he adds.

Initially, Kritika says, the medicines were available in private medical shops (in Mumbai), however by August, those dried up too.

"I visited 24 medical stores in my city. They were not available anywhere. I called various places. I called up medical stores in Delhi and Kolkata. They said they have a shortage too."
Kritika, 23, Drug Resistant TB Patient
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How Are States Managing?

The MoHFW's initial press release also says that districts and states have been asked to acquire drugs from private facilities for the time being to close the gap. While some health centres have received supplies over the last week, its been erratic and inadequate, say activists.

"Yesterday and today (25 and 26 September), in Mumbai they have got enough to give out one week's worth of Cycloserine," says Ganesh Acharya.

"On 19 September, the government centre could give only one strip of Cycloserine," adds Kritika.

Kritika says she was able to get two boxes (enough for a month) shipped from Gujarat. She says it cost her Rs 10,000 - 12,000, and even then she was only able to get access to them through family contacts.

"For someone who doesn't have that kind of access, they probably wouldn't get the medicines even if they were able to pay for it," she says.

"I have three young kids, and an unwell wife. Do I go to work? Take care of the kids? Or go hunting for the medicines? How can I afford them at such high costs?" says Suresh.

"We wrote to the Health Ministry in August. We wrote to all the Members of Parliament highlighting this issue, and most recently, we wrote to the Prime Minister's Office."
Chapal Mehra, Founder, Survivours Against TB (SATB)

"We didn't get a response from anyone," says Chapal Mehra, Founder of Survivours Against TB (SATB) collective.

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What Happens When You Miss Doses?

"With MDR-TB, the challenge is that the drug regimen is difficult already. It goes over months and requires 10 to 15 tablets of up to 7 drugs per day. Missing even some of them can be harmful," says Acharya.

"They tell us medication is critical and that not taking medication is equal to a crime, but then they don't have any for us. Who is committing the crime then?"
Suresh (name changed)

While many stop taking medication altogether, others end up rationing their medicines and taking lower doses than they need to in order to make them last longer, say activists.

"People are taking what they are getting without any proper dosage as-and-when they're getting them."
Ganesh Acharya

Irregular medication is not only detrimental to the health of the patient but, is also linked to more drug-resistant bacteria emerging, warn experts.

"On one hand, you talk about eliminating TB by 2025, but if the drugs are not available, how will we eliminate it?" says Blessina Kumar, adding:

"Our primary objective is to ensure that every individual diagnosed with TB receives the necessary treatment promptly, and without interruption."

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