Survivors Against TB (SATB), a community-based group of TB survivors has written to the Prime Minister’s Office (PMO) seeking his intervention on the issue of access to new TB drugs for thousands of Indians affected by drug resistant TB (DR-TB). This happens three days after Delhi High Court stated that the 18-year-old Patna girl will be administered bedaquiline under the supervision of Mumbai doctors from PD Hinduja Hospital and KEM Hospital in Parel.
The girl suffering from Extremely Drug Resistant TB (XXDR TB) who was denied a new anti-TB drug- Bedaquiline, by the government’s National Institute of TB and Respiratory Diseases, (NITRD) New Delhi on the basis of her domicile.
SATB members say this is just a tip of an iceberg and the government needs to take urgent action on issues of drug access and testing for lakhs of drug resistant TB patients.
Suffering from TB for almost 5 years, this girl was turned away from NITRD. She had to seek care at one of India’s leading TB hospitals – Hinduja Hospital, Mumbai where her doctor recommended her to start Bedaquiline treatment urgently. Her father had to approach the court to direct the government to administer the drug to her. She now has access to the drug, though thousands like her still don’t.
“Her story represents a text book case of the trauma and suffering patients have to go through in the government hospitals to obtain appropriate treatment”, said Saurabh Rane, a 24 year old XDR TB survivor.
Bedaquiline was included into the Revised National Tuberculosis Control Programme (RNTCP) in 2016 at 6 hospitals in five cities. Globally, it has shown excellent results even for patients with extreme forms of DR-TB with no hope for cure. It is now being used for treatment of DR-TB patients in numerous locations. Yet in India most patients continue to lack access to it.
“We must realise that many of these patients are often the poorest who are unable to afford care in the private sector. For them, the government is the only hope for accessing these drugs and stay alive”, said Deepti Chavan, an MDR TB survivor and SATB member.
Urging the PMO to consider these issues urgently, SATB has asked for a more flexible access policy to such critical drugs. It has urged the government to forecast the volume of such drugs needed in a 5-year period, create a budget for their procurement and institute a transparent procurement process. It has also urged them to expedite the much-delayed DR TB survey.
SATB has also urged the PMO to expand access to drug susceptibility testing (DST) to ensure access to appropriate MDR/XDR TB treatment. Patients are often subjected to incorrect treatment and turn drug resistant due to lack of appropriate tests. This acerbates resistance and increases human suffering, treatment costs and fuels transmission.
SATB believes that India cannot contain TB until every Indian has access to appropriate diagnosis and treatment. With innumerable delays on the programmatic front, the group has sought the PMO’s intervention and support on these issues to create access to appropriate testing and drugs for thousands of TB patients who need them urgently.