THE HAGUE, Netherlands – Attendees here observed a minute of silence on Thursday in remembrance of an 18-year-old girl in India who died two weeks ago from multidrug-resistant tuberculosis. She died, treatment advocates explained, because she couldn’t access bedaquiline, a drug that received regulatory approval five years before she needed it.
Among attendees here joining the moment were some who had survived the disease, but at a cost.
Nandita Venkatesan found herself in a similar position a decade ago – at 17 years old she was diagnosed with MDR-TB in India and would go on to battle the disease for the next eight years. In the process, kanamycin – the toxic second-line injectable antibiotic that can cause permanent hearing loss, among other severe side effects and the only available drug at the time made her deaf.
Until recently, thousands of MDR-TB patients – the 25 percent of MDR-TB patients who have access to treatment – had to make a terrible choice, Venkatesan said: deafness or death. The approval of bedaquiline to treat the disease should have meant that patients would not have to make that choice anymore, activists said. But despite recent price drops, the cost of bedaquiline still prohibits MDR-TB patients from accessing the drug, TB advocates said here.
TB activists held a demonstration during the opening ceremony here, calling on bedaquiline maker Janssen to drop the price of bedaquiline in half to one dollar a day – a call that was met with cheers by the audience.
Janssen’s new lower price is only available in some countries and priced at $400 for a six-month regimen, which, advocates at Médecins Sans Frontières say, is still too high for patients who need the drug for the standard 18 to 20-month regimen.
“At $67 per month, bedaquiline is more than double the price of linezolid ($29–42 per month) and up to 22 times the price of levofloxacin or moxifloxacin ($3–9 per month), the two other medicines the latest WHO treatment guidelines recommend for the backbone of DR-TB treatment regimens,” MSF advocates said in a statement. “However, researchers from the University of Liverpool have calculated that bedaquiline could be produced and sold at a profit for $16 per month at volumes of 108,000 treatment courses per year.”
The drug’s maker, the statement noted, “received substantial taxpayer money from the U.S. and other governments for the development of bedaquiline, and therefore has a clear responsibility to make sure the public gets a return on this investment by making the drug affordable for everyone who needs it.”
“I was told kanamycin would save my life,” Venkatesan said when recalling the 200 painful injections she had to endure as part of MDR-TB treatment without bedaquiline. “But what kind of life is this? Why was I forced to choose an option of going deaf or dying?” she said. “It’s as good as being half dead.”