Government agrees to provide Bedaquiline to young girl living with XDR-TB

Government agrees to provide Bedaquiline to young girl living with XDR-TB

Victory for a father and daughter fighting for her right to treatment before the Delhi High Court

New Delhi, 20 January 2017: In an important case for access to TB treatment in India, a young girl diagnosed with extensively drug resistant (XDR)-TB has won the battle against the LRS Hospital, New Delhi, and the RNTCP programme to ensure her access to a life-saving TB medicine, Bedaquiline. Under consent terms filed by the parties it was agreed that that hospital cannot deny treatment with Bedaquiline based on domicile which was the basis of the petition. The government has also agreed that Bedaquiline will be made available to the girl through the government programme. The petition was filed by the father on behalf of the girl and they were represented in court by the Lawyers Collective.

XDR (extensively drug resistant)- TB, is a very difficult to treat form of TB, in addition to being expensive and treatment is loaded with side-effects. Bedaquiline, was conditionally approved in January 2015 to be used solely through the RNTCP’s Conditional Access Programme which was launched in March 2016. As of December 2016 only 164 patients were put on Bedaquiline treatment in the country while there are 600 doses that have been donated to the programme.

“My daughter was detected with XDR-TB in November 2014 but we were turned away by the hospital saying there was no hope for her and asked to try alternate medicines” said the girl’s father. Despite test results being available with LRS Hospital which indicated that she was eligible for Bedaquiline in May 2016, two months after the government’s programme was launched, they were not told about the medicine. “We are happy not just that she will finally get Bedaquiline but also that patients from other States will also benefit by the doing away with this domicile rule” he added.

Anand Grover, Director, Lawyers Collective and Senior Advocate, who along with his team, Lorraine Misquith and Shrinidhi Rao, appeared on behalf of the girl, stated “the government programme has failed patients. It was absolutely critical that we moved Court because this young girl’s right to life and health was being denied based on bureaucratic requirements.” Responding to the terms of the consent order Mr. Grover added “Moving for a compassionate use application would have delayed her access by months. It is good the government has agreed that Bedaquiline be administered and supervised through her treating physician while they provide the course to him” he added.

Following LRS Hospitals’ denial of Bedaquiline, the girl was taken to Hinduja Hospital, Mumbai, for a consultation with Dr. Zarir F. Udwadia, an eminent TB specialist in India. It was the first time that they heard about Bedaquiline. “It is truly unfortunate that she was not started on treatment earlier as her reports clearly indicated that should would benefit from it. From my 30 years of clinical experience treating patients with severe drug resistant TB she has a sufficient backbone regimen and adding Bedaquiline would significantly improve her chance of cure” he said.   

The girl’s medical case for Bedaquiline was additionally strongly supported by the expert medical opinions of Dr. Jennifer Furin, Lecturer in Global Health and treating doctor at Harvard Medical School. “I’m very heartened that the Courts have stepped in and done the right thing. This case is just a reflection of how much more the RNTCP programme needs to do to diagnose, test and treat patients for MDR and XDR-TB as early as possible for patients to have the best outcomes possible.” Dr. Furin’s opinion has been endorsed by several eminent physicians, public health specialists and epidemiologists working in the field of MDR-TB globally.

Contact Information:

Anand Grover– anandgrover@gmail.com  +91 9899439593

Dr. Jennifer Furin - jenniferfurin@gmail.com +1 440 855 1395

Lorraine Misquith- lorrainemisquith@gmail.com, +91 9717689082