Sixteen-year-old Harshita Singh is worried about her Class XII board exams. A student of Sarvodaya Kanya Vidyalaya in Jahangirpuri, she hasn’t attended school for the past three months and missed her pre-boards after she was diagnosed with multidrug-resistant tuberculosis (MDR TB) in July.
Sitting on a bed in the family’s one-bedroom apartment in Jahangirpuri’s D block, Harshita, bundled up in a green jacket and a quilt, and donning a black surgical mask, is on a call with her school teacher. She sobs that her college plans will be affected. “Ek saal poora waste ho jayega… school fees, tuition fees. Sab waste ho gaya (My entire year will go to waste. School and tuition fees have gone down the drain),” she says.
MDR TB is caused by germs that are resistant to two or more of the main tuberculosis drugs — isoniazid and rifampin. Medicines are procured by the state programme officer and then distributed to hospital pharmacies and dispensaries, where patients can get them for free.
But this hasn’t been the case on the ground for a while now. A government dispensary five minutes from Harshita’s home only provides TB medicine once in five days — if they have stock.
On Saturday at 9.30 am, her mother Jyoti Singh visited the dispensary but came back empty-handed. “They said the medicines are out of stock. I will ask my husband’s brother to buy them from a private pharmacy despite the high price. We have to ensure Harshita’s treatment continues,” says Jyoti.
On Monday, she went to Babu Jagjivan Ram Hospital and got nothing. She then went back to the dispensary and managed to get tablets that would last five days.
Jyoti adds that in these five months, she got the medicines — Linezolid and Cycloserine — from the dispensary only for a single month. A strip of six tablets of Cycloserine costs Rs 350; Harshita needs to have them twice a day.
There has been a shortage in the supply of key TB drugs since 2023, The Indian Express reported on December 6. The key factors behind the shortfall: the nodal procurement agency cancelled nine of its 26 tenders to purchase these drugs due to “administrative reasons”; and, three suppliers were blacklisted for violations ranging from forged bank guarantees to faulty pricing. The Centre has now directed states to procure them locally for three months, with no restrictions on size or formulation.
With help from her math teacher, Harshita moved the Delhi High Court through advocate Sachin Jain on December 9 to explain her ordeal; following this, the court directed the state government to provide her medication.
The court also told the Delhi government to expedite the processing of a sputum culture test report, conducted on July 19 this year; if it indicates the necessity of any additional medication for Harshita, the court said it must be provided without undue delay.
‘Saved up money for college… now it’s gone’
The family’s finances are in bad shape. Their sole breadwinner is Harshita’s uncle — her father’s elder brother — who is a tailor in Jahangirpuri and earns around Rs 15,000.
Jyoti is a homemaker. Her husband, Akhilesh Singh Chandel, who also suffers from TB, used to work in a garment shop but had to stop in 2017 due to his health. The couple has two more daughters, aged 13 and 5 months.
“All the money we saved up for Harshita’s college is going into her treatment and purchasing expensive medicines,” says Chandel. He adds that Harshita wanted to take up a job and pursue college simultaneously to reduce the financial burden on the family.
“We’ve spent Rs 15,000 since July,” adds Harshita.
A few weeks ago, the family panicked after she complained of severe pain. Jyoti says, “My daughter developed neurological issues. Doctors at IHBAS said it’s a side effect of the medicines.” Linezolid was then discontinued.
At the dispensary, meanwhile, the pharmacist expresses helplessness. “We got the stock in December but it’s unavailable again.”
She says currently, 12 MDR TB and around 100 TB patients visit the dispensary regularly. “We give them what we have and ask them to purchase the rest outside,” she says. “Upar se hi nahi aa raha hai toh hum kya karein? (We are not getting stock so what can we do?)”
Amid the family’s struggles, help has come from Dildeep Singh, Harshita’s teacher who helped file the petition. He assisted the family in preparing a chart of medicines received from the dispensary and the hospital since July and the number of times they had to buy it on their own.
“I used to teach Harshita… When the Covid pandemic happened, I stayed in touch with some children from the school and tried to help in whatever way possible. However, in this case, more such patients (like Harshita) are suffering which is why I decided to file a case in the court,” says Dildeep.
Apart from the medication, MDR TB patients get Rs 1,000 after diagnosis and 500 per month from the state government. But Harshita has not been receiving it, claims her family.
When contacted for comment about the status of the medication as well as the funds, Director General of Health Services Dr Vandana Bagga and the Delhi government spokesperson did not respond.
Sources in the state health department said the availability of TB medicines has been a struggle since the pandemic. “There are not many makers of TB medicines as these are manufactured under strict WHO guidelines. However, since Covid supply has remained erratic,” said a source.
Back at the family’s home, Jyoti gets up to finish her chores. It’s been a tough journey, with both her husband and daughter suffering from TB. “I have to take care of them, cook, clean the house… I also get their medicines and take them to the hospital for regular consultations and checkups,” she says.
“And I make sure Harshita gets her medication every day,” she affirms.
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