Debashree Lokhande, a Pune resident, is a survivor of XXDR TB. She was recently invited to the 50th Union World Conference on Lung Health in Hyderabad to deliver a talk on different TB-related topics. She was one of the 60 survivors chosen across the globe aimed at creating a coordinated global advocacy movement.
When she was diagnosed with TB, Debashree completed her graduation in architecture from Cummins College, Pune and had joined a firm in Ahmedabad, Gujarat. In a battle between Debashree and Extremely-Drug Resistant TB (XXDR-TB), this gritty woman emerged victorious.
She spoke on topics like, how the right to medicine is right to life, a demand-supply mismatch for TB drugs, the stigma associated with TB, the mental health issues that come up as side effects of some drugs, and how TB survivors are doing advocacy to end TB.
Many basic medicines against TB are not yet made available to many Indians. What about the right to medicines?
The right to medicines is the right to life. We often read in news reports how medicines are short in supply. Many drugs are expensive and not all are able to avail them. Access to drugs is access to live. My life was saved because I got access to the two new drugs and at the time when they were not even heard in India. When patients tell me that they are not getting drugs, it really breaks my heart. What gives the right to someone to decide if someone deserves a drug or not. Every TB patient should get equal rights to drugs.
The government has purchased around 20,000 doses of bedaquiline, but in India, there are at least 1,50,000 patients who need bedaquiline. If you are not going to address the problem of MDR-TB by using the strongest weapon you have, then how are you going to end TB? Also, bedaquiline is patented, so it cannot be produced generically. In that case, people are dependent on the government for making the drug available.
There is a lot of stigmas associated with TB. What should be done?
I have been TB negative for two years. But still, when I joined my full-time job, people behaved with me in a weird manner. People even asked me why I am still talking about TB, when it was something that happened to me in the past. Why cannot I let go of it? But I talk because I want to end this stigma. It is the duty of the family and patient’s friends to stand for them strongly when they themselves are not strong enough to do so.
It is important that the patient should feel supported. Because of stigma patient might start blaming themselves or medicines. They might think that change in their skin colour and their weight is because of medicine, and then they might not take the medicine. It will further spread TB and then it’s going to cause more problems.
There is one medicine named ‘cycloserine,’ which has many side effects, like seizures, hallucinations, mood swings, etc. In such an instance, we need a lot of mental strength.
How advocacy can lead the efforts to end TB?
As a patient and as a survivor of TB, we connect to patients at a grassroots level, we know what issues patients face, and we can help policymakers while making policies. We can define what we want from the system. Leading the government in the direction of achieving that target of ending TB, the role of patients advocate is important.
We, as patients have gone through this, and we can give a more realistic approach to it. For example, the government has started giving Rs 500 every month for TB patients. While we understand that it is a good step, we also know that the amount is not enough. But because of our advocacy, there are some patients who are getting more than Rs 500.