Dear Shri Modiji,
I am writing to bring to your attention the health crisis of TB in India. I am both a survivor and now an advocate for others who are affected by TB. Let me start by telling you about me. I found out I had TB when I was 16 and had my board exams. Despite several medications, the cough would not stop. Medicines from my family doctor for the cough somehow managed to help me complete my exams.
After exams, my cough persisted. From one doctor to another, it took me more than a month to get diagnosed with TB. My family and I were devastated. [envoke_twitter_link]How could I have TB at 16?[/envoke_twitter_link] Even though my doctor started treatment after diagnosing TB, I continued to remain unwell. It was later found that I had a more dangerous form of TB called Multi-Drug Resistant TB (MDR-TB). From that moment, my life changed forever.
I fought TB for 6 years, survived two surgeries, which included the removal of my left lung, innumerable injections and pills. Many doctors told me I had no future. I was lucky I survived as 50% Indians with MDR -TB don’t. I had a loving family that fought this disease with me. Most people are not that lucky.
TB now affects 2.8 million people in India, causing 1400 deaths every year. There are over 100,000 Indians affected by MDR-TB. Most of them remain undiagnosed, untreated and left to die.
Now, I work as a patient advocate to help the government and other stakeholders to understand what we need to do in order to fight this disease from the patient’s perspective. I am writing to you sir, because you have spoken about development for all. [envoke_twitter_link]How can India develop when so many Indians are affected by and die from TB?[/envoke_twitter_link] What will it take for India to defeat TB?
We thought that through our own stories of survival we could end up with a few measures that India urgently needs to implement. We realised that we had to reach out to all levels and so I am writing to you, the Prime Minister. I have simultaneously written to the Health Minister, and other key government health officials to make our voice heard.
What can we do? Our key recommendations point in this direction. They include free and accurate diagnosis and treatment for every Indian irrespective of where they seek care, nutritional and economic support for poor patients, large-scale awareness campaigns, addressing drug resistance, the need to bring new drugs and better surveillance. Most importantly, we have strongly recommended engaging India’s vast private sector where most TB patients continue to seek care. TB cannot be defeated by the government alone. All stakeholders need to come together.
Just like other survivors of TB, I believe India needs a national movement against TB. It’s such a huge crisis and yet, even today, most Indians are unaware of it and fail to find appropriate diagnosis and treatment. Why?
Modiji, patients need more than medicines. They need acceptance and care. [envoke_twitter_link]How can TB be defeated if we don’t fight stigma through awareness?[/envoke_twitter_link] How do we expect patients to take drugs with extreme side effects without food security and economic support? We urgently need nutritional and economic support, especially for those who are poor and their families depend on them. The only way we can defeat TB is if every single Indian has access to free high-quality care, counselling and support from the family.
I hope the letter we have written to our government is considered carefully and the suggestions are taken seriously. We need your support in this fight. The only way to defeat TB is if every citizen of this country understands TB and is able to seek quality care for it easily.
Sincerely,
Deepti Chavan
MDR-TB Survivor and Patient Advocate
_