Aged 11, clad in a head scarf and kurta, and cured of a deadly strain of extensively drug resistant tuberculosis (XDR-TB), Saima Chaudhary has just begun going back to school. The girl is among few minors who have undergone treatment using the newest TB drug in India, Delamanid.
On Wednesday, she came under one roof with 30 other patients — who have been cured using Bedaquiline and Delamanid, touted as the last hope for XDR patients — to push government for easy access to these two new medicines.
The Indian government is conducting a controlled trial of Bedaquiline before making it available for limited patients to avoid scope of any drug resistance due to rampant use. Delamanid is yet to be launched by Ministry of Health and Family Welfare, as the approvals are under process.
Kurla based Saima and her elder sister Sabiha (18) — infected by the same bacterial strain — were both treated on compassionate grounds after treatment in government run Group of Tuberculosis Hospital, Sewri, failed. Both sisters were cured last August.
In Mumbai, 4,969 MDR and 526 new XDR patients were registered with BMC in 2018. However, across India, only 3,500 drug resistant patients have been put on Bedaquiline regimen till February.
Since 2016, Bedaquiline was introduced for patients aged above 18 under conditional access programme despite a World Health Organisation guideline permitting it for patients aged six or more. The government is yet to introduce Delamanid under Revised National Tuberculosis Control Programme (RNTCP). Until then, minors requiring the life saving drugs, Bedaquiline and Delamanid, have zero access.
The Chaudhary sisters were diagnosed with multi-drug resistant tuberculosis (MDR-TB) in 2016. They underwent treatment for seven months in Sewri hospital. “But they only got weaker,” said father Noor-ul-Huda Chaudhary, who works in a plywood shop. Saima dropped out of school for six months, Sabiha missed one year of education.
In 2017, a private doctor referred them to Medicins Sans Frontieres (MSF) where both were detected with XDR-TB strain. “I still do not know if Sewri hospital gave wrong treatment or if the bacteria grew resistant,” the father says.
“Even if Sewri TB had diagnosed XDR strain, the girls, being minors, would not have received Bedaquiline drug,” MSF clinic incharge Dr Pramila Singh said. Both drugs, with huge procurement costs amounting to over Rs 8-10 lakh, were administered for a year and a half. “I did not think my younger one would survive,” Chaudhary says, adding, “Government needs to provide newer drugs to patients who cannot afford.”
Since 2014, MSF has enrolled 210 patients for Bedaquiline and Delamanid, of them 60 have been cured till now. Of them at least 30 required combination of both new drugs for getting cured. All drugs were procured on donation basis.
A group of 10 TB survivors who underwent treatment using Bedaquiline and Delamanid are now pushing the government to make their access easy. “We are also opposing Johnson & Johnson’s move to extend patent on Bedaquiline. Several patients in urgent need will miss out on life saving drugs,” said Vaibhav Kadam (25). Kadam fought TB for five years, gradually progressing from TB to MDR, to finally XDR strain before he got access to both Bedaquiline and Delamanid in 2016. In April 2018, he was finally cured. He lost his father to TB, and was forced to quit graduation due to treatment.
Another survivor Pooja Yadav (21) was treated for pneumonia in Varanasi until her father decided to shift to Mumbai in 2015 and diagnosed her with TB. “My father could never afford treatment had the medicines not been provided for free,” she says.
She spent eight months in Sewri hospital, vomiting anything she ate. “That is when we realised the medicines were not working and I approached MSF,” she said.
Yadav, being a minor, was not eligible for the new drugs under RNTCP. “Nobody even told us about these drugs in government programme,” she claims. India has recently procured 400 Delamanid drugs on donation basis. It is yet to start full fledged funding of the two new drugs.