A survivor’s take: Why India must ensure a shorter oral regimen to treat drug-resistant TB

Imagine that you have a debilitating disease that is curable – and yet you cannot be cured because of the lack of access to drugs. Will that be justified, humane or even ethical?

Across India, those fighting drug-resistant tuberculosis are suffering terribly. Despite the emergence of new drugs, the existing health system offers little help in reducing the suffering of such patients. Adherence to tuberculosis treatment still remains dismal as patients are denied access to new regimens and drugs.

All-oral regimen

There have been significant research trials that show that drug-resistant tuberculosis treatment can be reduced to as little as six months duration with an all-oral regimen. This method also shows limited side effects and higher cure rates. It should be a no-brainer that India’s drug-resistant tuberculosis patients need these regimens.

However, the only significant development on the all-oral regimen front, is the recommendation by the National Technical Expert Group, as recapped in the India TB report 2021, to move to a longer all-oral regimen for patients that are ineligible for a shorter multidrug-resistant tuberculosis regimen.

We still see only marginal investment, attention and consideration towards shorter all-oral regimens for patients across the drug-resistant tuberculosis spectrum in India.

For instance, even as a shift to a shorter all-oral regimen would be transformational by reducing patient suffering drastically, India still does not have a comprehensive access strategy. One wonders how far we would be in making universally available an all-oral antitubercular regimen that can reduce the span of the treatment.

Access to more efficacious and less toxic drugs is essential for defeating the disease. It is not just not a priority, it should be provided as a matter of right. I say this as an extremely drug-resistant tuberculosis survivor who survived because of access to two new drugs Bedaquiline and Delamanid. I survived this dangerous form of TB not only because of a committed, informed and knowledgeable doctor but importantly due to access to these drugs and a safe system of monitoring its process.

Lack of access

Today, as the world grapples without a cure to Covid-19, I want you to pause and reflect on the anguish of thousands of such patients who can be cured but cannot access medicine. They may not survive if they do not have access to these drugs. If they do survive, they will live with disabilities and life-long side effects.

Why do we not understand that there is both a human cost and a public health cost in not shifting to a safe, shorter all-oral regimen for treating drug-resistant tuberculosis? Surviving drug-resistant tuberculosis is extremely hard. The treatment is long and toxic and with extreme side effects from losing eyesight, your hearing, to nausea, vertigo, neuropathy and numerous mental health issues.

Drug-resistant tuberculosis patients, unless they are lucky enough to have access to longer all oral regimens which are not universally accessible across states, are expected to take injectables every day for six months as part of their treatment. The injection site thus needs to be changed frequently to minimise pain and discomfort. Given the daily exposure to needles, multiple injections sites can take longer to heal despite site rotation. In such cases, one nearly runs out of places where a patient can be injected.

Thousands in India and globally suffer this medieval and painful treatment when better drugs and new regimens are possible. Why do thousands still lack access to new drugs and more acceptable regimens? Why do patients suffer when better options are available? Is this not a gross human rights violation?

There is also a public health cost. Shorter all-oral regimens mean patients are less likely to quit treatment mid-way. In its absence, they continue to give up, and it will result in suffering but also more cases of drug-resistant tuberculosis. Effectively, we will have to spend more resources in controlling drug-resistant tuberculosis. India already has the distinction of leading the world in drug-resistant tuberculosis incidence, and we cannot afford the public health cost of a worsening drug-resistant tuberculosis crisis.

The way out

To begin with, what we need is a clear strategy that details the clear position of the government on shorter all-oral regimens. We need informed decisions and clear access strategies with safeguards in place. Access, pricing, and availability to all, including the private sector, are critical.

Not the government alone, it is also the legal and moral responsibility of pharmaceutical companies that benefit from taxpayers’ money for research and development, to cooperate with governments in low and middle-income countries to make drugs available through mechanisms of affordable pricing and local partnerships.

As a civil society and tuberculosis survivors, we ought to keep relentlessly advocating for the shift to shorter all-oral regimens. No one should have to wait for a drug that would cure them because they cannot access it due to bureaucratic delays, availability or pricing. I am alive today because I could get access to new drugs and a good team of doctors. Everyone is not lucky like me. It is time to recognise access to drugs as a human right. Any delay and denial on this front is nothing but a crime.

Debshree Lokhande is an extremely drug-resistant tuberculosis survivor who battled with the disease for 7.5 years. She is also a Fellow and Patient Advocate at Survivors Against TB.