advertisement
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.
“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.
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.
“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.
"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.
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.
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.
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 didn't get a response from anyone," says Chapal Mehra, Founder of Survivours Against TB (SATB) collective.
"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.
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.
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:
(At The Quint, we question everything. Play an active role in shaping our journalism by becoming a member today.)
Published: undefined