An 18-year-old girl’s legal battle puts the spotlight on the need to widen access to the new wonder drugfor multidrug-resistant tuberculosis
An 18-year-old girl has taken the Indian government to court after being refused access to blockbuster tuberculosis drug bedaquiline (BDQ). The girl has extensively drug-resistant tuberculosis or XDR TB and her case is emblematic of the desperation of TB patients in India, as the Health Ministry has delayed the roll-out of the life-saving drug beyond six centres in the country. As the case comes up for hearing on Monday, Jennifer J. Furin of Harvard Medical School, who is also an expert witness in the court case, tells The Hindu in an e-mail interview that the decision will have a far-reaching impact on India’s tuberculosis patients. Excerpts:
How worried are you about the Indian government’s delay in rolling out bedaquiline?
First of all, the delayed roll-out and restrictive criteria are resulting in the unnecessary loss of life for thousands of people living in India. Before we had limited options for them, but now with bedaquiline we do, and all citizens of India (and of the world) have a right to health and life and access to this medication. Second, the delay means that little is being done to stop the ongoing spread of MDR-TB (multidrug-resistant tuberculosis). By denying people access to this drug — which doubles the chances of cure — they are allowing MDR-TB to spread unchecked throughout the country. And this also affects the international community given that MDR-TB is an airborne disease.
Will improving access to bedaquiline result in antibiotic resistance, as the government fears?
Some degree of responsible use is necessary. You don’t want BDQ available in all the drugstores or on the open market. But the severe restrictions the Indian government has placed on BDQ — with officials saying it should only be used for the worst, most resistant cases — actually increase the chance of generating BDQ resistance. Data from South Africa show that the sooner a person is offered access to BDQ, the better the outcome for the individual patient and for the community.
Denying this young woman access to BDQ weakens the public’s confidence in the public health system, and they will continue to go to private services until quality care is available to them elsewhere.
What are the implications for the rest of the world if India does not show urgency in this matter?
There have been cases of persons travelling to India and becoming infected and sick with MDR-TB, so India’s refusal to scale up BDQ is really the world’s problem. India desires to be more prominent on the international stage, but their continued refusals to address the public health crisis of TB and MDR-TB really will limit such global aspirations. India is clearly abdicating its responsibility on the TB front, and other countries have noticed this and are not happy about it.
Do you think India’s TB management policies are not in sync with the country’s disease burden?
The management policies are completely out of sync with the burden of TB and MDR-TB in the country. TB is an emergency in India and needs to be treated as such. India is such a leader in health and technology, it is baffling that they continue to report the highest rates of TB and MDR-TB in the world.
Are you hopeful that the 18-year-old girl will get access to bedaquiline in time?
I am always hopeful that we will do a better job in providing persons living with TB and MDR-TB with the care they need and deserve.
A decision must be made urgently, though, because she is very sick right now. We can no longer be satisfied with “protecting a drug” when we should be protecting people’s lives.