India is the tuberculosis (TB) capital of the world, with more than 2.8 million cases. Thousands of Indians are being pushed into depression, poverty, suffering and debt every day due to this disease. Clearly, we seem to be losing the battle against this foe, seemingly deadlier than terrorism.
TB is curable, but why is it such a challenge to control? This disease is caused by one of the most mutative bacteria that can respond differently to medication. We have only a handful of drugs to treat TB, and there are chances that the bacteria might turn resistant to some. Depending on the condition, we have drug-resistant tuberculosis (DR-TB), multi-drug-resistant TB (MDR-TB), extensively-drug resistant TB (XDR-TB), and totally drug-resistant TB (TDR-TB). India has over 100,000 such cases. XDR-TB needs stringent and accurate treatment, and few drugs work in such cases. Chances of survival are often minimal. More than 30 years of research has yielded two new drugs — Bedaquiline and Delamanid. Considered miracle drugs, they can be used apart from traditional TB medicines.
Recently, a young girl, barely 18, and who is battling XDR-TB, was denied Bedaquiline. The reason given by the government was that she didn’t have the appropriate domicile. The drug is available in select cities and requires stringent monitoring.
My fight
It reminded me of my own struggle, two years ago, when I was diagnosed as a borderline XDR-TB case. There was barely any medication that could work on me. My doctor applied for me to receive Bedaquiline on compassionate grounds. Unfortunately, I could not qualify for the drug for technical reasons. My heart rate and calcium levels were higher than the range required, which posed a serious risk.
I could not believe the denial. All hope seemed to slip away. I was barely 21, 50 kg and had my entire life ahead of me. However, my doctor did not give up and put me on a combination of highly potent drugs, used in severe, drug-resistant conditions. Though a risk, it worked. But with the beneficial impact of treatment, came the sideeffects. Due to these medicines, there was concurrent monitoring along with special care.
Think of the patient
This girl’s father went to court. It worked and she will be started on Bedaquiline shortly. What if he had failed? The government needs to realise that not having access to a life-saving drug is devastating. Patients lose hope and the motivation to fight. While it is essential to keep such drugs in safe hands to ensure no further resistance, you cannot deny patients potentially life-saving drugs. Why can’t we develop a system that allows access to such drugs under strong monitoring? We need to ensure that patients everywhere, irrespective of where they seek care, have access to it.
The case of this young girl is a mirror to thousands of patients who do not have access to a potentially life-saving drug. For some, it could shorten the treatment or provide a better quality of life, for others it could simply save them. The government needs to create a strategic partnership with the private sector to develop an easier protocol needed to make such drugs accessible. Also, there is a need to estimate the need of this drug — we still don’t know how much drug resistance we have. Finally, we need to ensure that we have cost-effective, free, high-quality testing for drug resistance available early to all patients. Patients who need this drug should be provided the free tests that are required to get this drug.
An appropriate mechanism is a filtering process set up by an expert panel which has private sector representatives too. This group can take vital decisions for dispensing Bedaquiline and other such new drugs.
Building further on this, there has to be priority catalytic funding provided to research organisations for development of revised regimes, drugs and techniques. There has to be adequate training of medical and paramedical staff handling the drug and sensitisation for those being given this drug.
Unless the public health system takes an integrated approach to this problem, we will face countless compromised lives despite a potential solution within our reach. Nothing gets more disturbing than knowing this fact.
Saurabh Rane, an MDR-TB survivor, is part of ‘Survivors Against TB’, a community of TB survivors working to strengthen India’s fight against TB
