World Tuberculosis Day: “It’s time” to end the suffering and accelerate access to all oral regimen

Atul Loke/Panos Pictures

Mumbai (India) – As of February 2020, the MSF private clinic in Govandi, Mumbai has initiated 188 drug-resistant tuberculosis (DR-TB) patients on treatment regimen which includes Bedaquiline and Delamanid. 

Globally, an estimated 10 million people fell ill with tuberculosis (TB) in 2018 with India bearing the largest share of global TB burden (27%) much more than second and third countries in line which are China (14%) and the Russian Federation (9%).[1]

In Mumbai, Maharashtra, international medical humanitarian organisation Doctors Without Borders /Médecins Sans Frontières (MSF) is running a programme since almost two decades which treats complex DR-TB patients with or without HIV co-infection.

DR-TB is still one of the most difficult to treat disease where the bacteria becomes resistant to most effective first and second line drugs leaving affected patients and clinicians fewer options for treatment regimens consisting of painful daily injections up to six months, high pill burden, long treatment duration up to 24 months, severe side effects (due to toxic drugs) and poor treatment outcomes.

“I felt fine for the first six months, but then the side effects began. I began going deaf in one ear and I was always fatigued and in pain. I lost all my appetite, would cry all the time and many a times felt suicidal. The injections were the worst. I was on these for nine months.” Says Rekha a DR-TB patient.

In 2012 and 2014, after a gap of 50 years, two new anti-tubercular drugs i.e. Bedaquilline and Delamanid were approved for use by US Food and Drug Administration (USFDA) and European Medicines Agency.  The drugs were included in new DR-TB guidelines issued by WHO in March 2019, which represented hope for people with DR-TB and their caregivers because they offer better cure rates and fewer side effects using safer, shorter all-oral treatment.

Rekha was later diagnosed with Extensively drug-resistant TB (XDR-TB) and started on a treatment regimen that contained the two newest DR-TB drugs, Delamanid and Bedaquiline. Five months on, Rekha is feeling better and her appetite is returning to normal. Apart from the physical improvements, she also feels stronger psychologically. 

Before I didn’t want to even buy clothes for myself. I felt there was no point in owning things when I was going to die anyways. Now, I buy myself a dress whenever I feel like it.”

“With the new drugs and treatment, I feel better. I have hope to live and believe I can do whatever I want. I used to worry about the fate of my 9-year-old daughter but now I don’t. I want to ensure that she has proper schooling so I’m looking for a good job or want to start a nice vegetable shop of my own in my locality,” she says.

On this World Tuberculosis Day, Médecins Sans Frontières (MSF) urges India to scale up access to Bedaquiline and Delamanid for all people with DR-TB and discontinue use of harmful injectable agents.

We appreciate National Tuberculosis Elimination Program’s decision to use these new drugs as a routine in India but access to the new drugs needs to be improved. While further clinical research is needed, sufficient evidence exists to show that both Bedaquiline and Delamanid should be made available to patients for whom it is lifesaving. As safety data on different age groups becomes available the greatest benefits will be in children with DR-TB who can now potentially be treated with injectable-free regimens” says Dr. Farah Naz Hossain, Medical Coordinator, MSF India.

About MSF’s DR-TB project in India: Since 2006, MSF has provided free-of-charge comprehensive treatment packages with individualized treatment regimens for patients with drug-resistant TB in an independent private clinic in Mumbai.
The facility provides ambulatory medical and psychosocial care for patients with very complex TB resistance patterns (meaning their TB strain is resistant to many or nearly all available TB drugs), who require treatment regimens which are not available in the public sector.  Most patients seen by MSF have often previously been treated with ineffective regimens for several years by public and private practitioners. Some are also believed to have been directly infected in the community by extensively resistant strains.
MSF is treating XDR-TB patients with a regimen including the two new drugs Delamanid or Bedaquiline. Together in combination, early results have proved positive and effective for use in combination which are showing promising results and offer renewed hope to patients, especially when there are no other options left for such patient .

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