Toronto Star: Safer pharmaceuticals needed for multi-drug-resistant tuberculosis
SOURCE: Toronto Star
By Stephen Lewis and Georgia White
September 25, 2018
Nandita Venkatesan’s life changed irrevocably on Nov. 22, 2013.
Venkatesan, who had just turned 24, was studying with a group of fellow business school students in Mumbai, India. She decided to take a quick nap to refresh herself. After 10 minutes of sleep, she awoke to what she called “pindrop silence.” She could see her friends talking. She could see music playing on her phone. “But there was no sound in my world at all.”
Venkatesan had been battling multi-drug-resistant tuberculosis since she was a “doe-eyed” 17-year-old, as she described herself. She experienced many trials during the course of her treatment, which included six surgeries and two years of bed confinement. But the effects of her illness did not cause her hearing loss. The blame belongs to the internationally endorsed medicine she was taking to treat the disease.
“That is not something anyone should go through,” she told us for our new documentary, Two Countries: Two Choices: India, South Africa, and the Struggle Against Multi-Drug-Resistant Tuberculosis. “The drugs a patient is supposed to take — it’s horrible to say the least.”
MDR-TB, as it’s commonly known, is the worst and most noxious strain of tuberculosis in the world. In India, ground zero for the world’s TB pandemic, some 2.7 million people have TB. Of that number, 135,000 are affected by MDR-TB. Like Venkatesan, the vast majority are treated with a regimen that includes injectable drugs with vicious side effects. Up to 50 per cent of those who receive injectables lose their hearing. “Better deaf than dead” is a common refrain among the medical establishment.
Venkatesan, now 28, has been outspoken on behalf of new, oral drugs — bedaquiline and delamanid in particular — which are safer, more effective and free of incapacitating side effects. She will bring her message to the United Nations General Assembly, where she will speak on behalf of TB survivors during the first-ever High-Level Meeting on Tuberculosis tomorrow. She will not be joined by her fellow Indian, Prime Minister Narendra Modi, who, though he has pledged to end TB in his country by 2025, has, simply put, been missing in action.
The Indian government has starved the response to MDR-TB, a position that has become even more untenable in the wake of the World Health Organization’s decision to recommend that MDR-TB be treated with an all-oral regime with new and repurposed drugs. The Modi administration seems perfectly prepared to watch patients suffer and even die as they struggle for access to the life-saving drugs. Yet during a recent trip to India, a senior official in the Ministry of Health told us, “Everything is perfect.”
South Africa, on the other hand, has shown impressive leadership. Of the 322,000 South Africans with TB, some 14,000 have MDR-TB. In July, the South Africa government rolled out bedaquiline in a manner that should serve as a model for the world. Further, South Africa was the driving force behind the High-Level Meeting and incurred genuine risk by halting the negotiations over the meeting’s political declaration to demand a reference to affordable medicines be included. Following heated discussions with the Trump administration, South Africa emerged victorious.
While we won’t claim South Africa has been perfect in all of its actions, the Department of Health is nonetheless addressing its crisis head-on. During a visit to Pretoria, we had a wide-ranging discussion with the Minister of Health, Dr. Aaron Motsoaledi, who impressed us with his dedication and knowledge.
The High-Level Meeting at the UN offers a chance to make genuine progress on a preventable human tragedy. Pressure must be brought to bear on profit-driven pharmaceutical companies; their embrace of greed has done terrible damage to people of the global South. Recalcitrant governments such as India must be shamed on the world stage.
In practical effect, widespread introduction of the new drugs will prevent hearing loss and other painful side effects for thousands experiencing the miseries of MDR-TB. “My sole purpose for speaking up is to ensure that no one ever has to endure the horrors I have,” Venkatesan said. “It’s time to tackle TB on a war footing.”
Stephen Lewis is co-director of AIDS-Free World. Georgia White is strategy and policy associate for AIDS-Free World.
(Photo: ©AIDS-Free World)