By Maya Palit
Update: On January 20, the centre approved a decision to grant Meera a full course of bedaquiline in a Mumbai hospital.
You might recall having heard that the 12th Five Year Plan is targeting a TB-free India by 2017. But sadly, just two weeks into the new year, and we already have a particularly tragic case of a tuberculosis patient coming to light.
An 18-year-old girl from Patna — let’s call her Meera — with an extremely drug resistant variant of TB (XDR TB), a type that makes patients resistant to at least four core drugs, is being denied the only treatment that may help her survive. This is the medicine Bedaquiline, made by the American drug company Johnson and Johnson, and was introduced into the government’s Revised National Tuberculosis Control Programme (RNTCP) with conditional access in February 2016.
Hailed at the time as a TB curing miracle drug, it is still under trial and only six “pilot” sites in five cities — Delhi, Mumbai, Chennai, Ahmedabad and Guwahati — can provide residents with the drug.
Meera’s father Kaushal Tripathy filed a writ petition in the Delhi high court in December last year, which sought court directions for the girl to be provided Bedaquiline by the Lala Ram Swarup hospital in Delhi. The case had a hearing on Monday, and Meera and her father are being represented in court by lawyers from the human rights advocacy organisation, Lawyers Collective.
While they initially argued that the girl has a Constitutional right to the treatment, according to Lorraine Misquith, a research officer at Lawyers Collective, the situation is somewhat different now. “The hospital is raising the need for additional time-consuming tests and backbone regimens, disregarding quicker tests prescribed by Dr Udwadia and supported by an infectious disease specialist at Harvard, Dr Jennifer Furin. The hospital and RNTCP are being over-cautious about administering the one treatment that might save the girl, which is a problem with the RNTCP programme in general: There is a very poor and delayed scale-up for Bedaquiline for those who need it,” Misquith said.
The urgency of Meera’s case is evident; she currently weighs just 25 kgs, and is practically unable to walk. But a doctor, who wished to remain unnamed, said he had witnessed similarly dire cases of patients with multi-drug resistant TB (MDR) in rural West Bengal in the late 2000s. They, too, were denied necessary drugs because of overtly cautious monitoring.
The counter-argument, cited by LRS Hospital, is that there is a public health risk of the patient developing and spreading fatal resistance to Bedaquiline within the community. But the irony, confirmed Dr Anurag Bhargava, a professor in the department of medicine at Yenepoya Medical College in Mangalore, is that the danger of the patient spreading XDR TB is already looming.
“I remember the case of a 34-year-old auto-rickshaw driver in rural Chhatisgarh, who drove young children to and from school, and had had TB since he was 14. He showed me all the prescriptions, and had been through several steps of the national TB programme, but still developed resistance to six or seven drugs. Ultimately, we decided the situation was too desperate to wait for the entirety of the national programme, and we raised funds from the Tata trust and others, and he was eventually cured,” Bhargav said.
He added that in desperate situations like Meera’s case, there is an ethical need for accelerating the coverage of TB drugs across the country, particularly as XDR patients are not “dramatically different” from MDR patients, and there is now extensive infrastructure in place to deal with the latter. “The government is committed to universal access for TB treatment, but it’s time for two things: A greater sense of urgency in rolling out a greater quantity of drugs in states around the country, and introducing more flexibility in the hospitalisation period. We also should address reasons why people are not getting cured; our rates of cure of MDR TB at the moment stand at 48 percent – and this would involve examining whether systems are in place. When patients get support, like adequate nutrition and financial backing as in Kerala, for instance, the rates of default have fallen to zero,” he continued.
Meera’s case is particularly important as a reminder that although her family has shown exceptional support over her long illness period, with her father even expressing his willingness to rent a flat in Delhi, this is very rare. As journalist Maneka Rao indicates in an extensively researched article, women TB patients tend to experience gender-based diagnoses and gender inequalities in treatment. They often voluntarily delay seeking treatment until they are too sick to move because of the enormous stigma surrounding the disease (women are far more susceptible to being abandoned by their families because of the disease).
Manan Ganguli, who works in an non-government TB centre in rural Jharkhand, reports that women patients usually have to go for care to their parents’ house rather than their in-laws.
TB is the third largest killer of women of reproductive age in India, according to Denny John, public health researcher at Medico Friends Circle. The Global Tuberculosis Report 2016 estimates TB incidence among Indian women below 14 years to be at around 54 percent, and women over 14 years at 33 percent. Although RNTCP did find nearly three times as many male TB patients as female ones in India, the likelihood of discrimination against women patients is higher. For instance, several women with XDR TB are probably not going to be able to travel to the six centres where Bedaquiline is available.
So while the country applauds doctors treating TB drug-resistant patients in Mumbai, the need for a more accessible scheme that provides people outside the metropolises with sustainable treatment remains all the more urgent. A new drug called Delamanid is expected to be introduced in India soon, but it may not do any good until infrastructure is stepped up to ensure that there are no more devastating repeats of Meera’s case.
Co-published with Firstpost.