Priya was just 13 when she was detected with Tuberculosis five years ago. Years of inappropriate treatment left her totally resistant to all TB drugs.
However, Bedaquiline, a life-saving TB drug available with the government could save her.
After she was denied this drug on the grounds of her domicile, her father approached the Supreme Court in December last year to get the drug administered to her.
As the case made global headlines, the government agreed to provide her the drug.
Her case underscores the multiple challenges ordinary Indians face when affected by drug-resistant tuberculosis.
Priya was misdiagnosed and was given inappropriate treatment on multiple occasions. She also moved from the private to the public sector in desperation until she was told by one of India’s largest TB hospital that she was incurable and should try Ayurveda.
India’s drug-resistant TB crisis
Priya is one among thousands of Indians affected by drug-resistant tuberculosis. India has over one lakh cases of drug-resistant TB– a majority of which remain undiagnosed and untreated.
As her case shows, an average Indian fighting drug-resistant TB is plagued with multiple challenges. India’s preparedness to fight the drug-resistant TB remains poor and it often turns into a death sentence for those affected.
Challenges of drug-resistant TB in India
The drug-resistant TB is often diagnosed late and rarely suspected by doctors in the private sector. In the public sector, the bureaucracy takes long for patients to get a drug susceptibility testing (DST) and almost rarely are they put on individualized treatment.
In the private sector, these tests remain prohibitively expensive and often inaccessible.
There is an added challenge of primary resistance, which compounds diagnosis further. Thus, the patients face numerous obstacles to quick and early diagnosis of resistance and treatment.
If diagnosed, most patients cannot access affordable and appropriate treatment. The costs for treating drug resistance stands anywhere between Rs 2-5 lakhs, pushing families in to debt and poverty.
In the public sector, accessing treatment can often be a challenge. In the end, the patient often switches between public and private, as costs in the private turn unafforable. They end sicker, poorer and more desperate.
The government announced that it would be introducing 500 rapid machines to diagnose TB and drug resistant TB years ago. This was to significantly enhance India’s ability to diagnose drug-resistant TB. A similar announcement followed about Bedaquiline, the new promising TB drug to treat extensively drug resistant TB patients.
India has received 600 courses of the drug as donations by its manufacturer Jannsen. Yet India has not scaled up its ability to diagnose TB. As Priya’s case shows, access to Bedaquiline remains limited and caught in red tape. While the government is planning to scale it up, this remains to be seen.
What can be done
By this continuing neglect and inability to innovate or invest in controlling TB, India is creating a crisis that it would not be able to address in decades to come.
If India wants to comprehensively address multi-drug resistant TB, it needs to take several key steps.
These include wide scale awareness, improve access to drug susceptibility testing for everyone, provide access to free and appropriate treatment for drug-resistant TB and aggressively engage the private sector where over 50 per cent of patients seek treatment.
Every Indian should have access to free high-quality diagnostics for drug-resistant TB. Hopefully the government will consider instating a policy that allows access to these tests or drugs with a public or private prescription.
A similar approach must be followed with regard to the availability of drug-resistant TB treatment. Every drug-resistant TB patient must be comprehensively checked for drug susceptibility and individualized regimens.
Drugs like Bedaquiline, which are urgently needed to treat extensively drug resistant TB (XDR TB) patients, should be made available more easily.
Finally, India’s TB program needs a focused and accommodative private sector engagement strategy with a flexible approach to engage and work with them to ensure patients get access to accurate diagnosis and drugs. This will ensure that drug resistance is either prevented or diagnosed and treated early.
This, however, will need flexible policies, trust and a recognition of the private sector as a partner. There are experiments in India and globally that provide enough knowledge and guidance on this.
The repercussions of inaction
Apart from the severe human suffering, death and devastation; India’s growing drug-resistant TB crisis will have enormous economic implications. It will cost the country a lot more to treat a fraction of drug-resistant TB patients than to treat a larger segment of drug sensitive ones.
At the end, inaction will stretch India’s already small health budget to its extremes, creating a human, economic and development crisis India cannot afford.
– Dr Nerges Mistry is a Director and Trustee of The Foundation for Medical Research, Mumbai and The Foundation for Research in Community Health, Pune. She is a leading TB expert and writer based in Mumbai. This blog is contributed under a campaign by Survivors Against TB which aims to bring together the patient perspective on TB.
– Disclaimer: The opinions expressed within this article are the personal opinions of the author. The facts and opinions appearing in the article do not reflect the views of NDTV and NDTV does not assume any responsibility or liability for the same.