India: Hypocrisy and silence in times of galloping rise in cancers

We are not ready for it and refuse to speak about it.
India: Hypocrisy and silence in times of galloping rise in cancers
India: Hypocrisy and silence in times of galloping rise in cancers

It’s not like in the movies. The announcement of a cancer diagnosis is not accompanied by loud music. In India, there’s complete silence of another kind – a posturing and pretence and an inexplicable sense of shame in between. When you tell people in India you have cancer, they bend forward towards you and lower their voice!

Today is World Cancer Day. Some 1400 Indians die of the disease every day and the numbers – wherever data is available – are not reassuring. Non-communicable diseases (NCDs) of which cancers, strokes and diabetes are a major part now surpass deaths from communicable diseases – Tuberculosis, HIV/AIDS for example. And what are we doing?  Other than wringing our hands in despair and a few welcome voices from celebrities who have joined the fight to push back, it is not seen as an emergency. One, because according to our own health ministry’s admission, only 40% of India’s 300 cancer hospitals are adequately equipped. A minimum of 600 additional cancer care centres must be created in the next four years to meet basic treatment and care.

I was diagnosed with cancer in 2011. The first reaction from some of my Indian friends was to keep quiet about it. I didn’t and when I was ready, decided to publicly advocate for access to treatment and care. If I had a platform, public health was going to be a key issue on it. Read here.

There were two reasons that pushed me to speak up and speak out. One was the landmark decision on Novartis by the Indian Supreme Court (Glivec) where the company lost a patent battle and the other was Indian hypocrisy. An Indian activist campaigning against Novartis asked me if I could help get frontline drugs for her mother who was recently diagnosed. The other reason was to give thanks to the thousands of women and men who had contributed to and been a part of research that allowed faster drug discovery and access. Other people’s sacrifices helps me stay alive – what better reason to not try and take that further?

The moment I spoke up I received calls from friends in India sharing stories about their loved ones and friends and the quasi-total absence of emotional support. My friend’s hypocrisy (public posture – private access) is not unusual but it hit me hard. India’s rich fly out for any elective surgery, the middle classes navigate between bankruptcy, access and their address book.  India is a huge market for pharmaceutical companies and some of them have access programmes which are a sham (I will deal with that in another post). Few, very few genuinely care about the millions who can afford nothing. Oncologists in India will tell you hair-raising stories about how many people they turn away either because it is too late or because treatment is expensive.

I was lucky to have access to good treatment and care in Switzerland where I live for part of the year. The clinic I go to is an interesting one and my haematologist-oncologist combines the best of medicine and technology and advocacy. His patients come from all over the world – Russia, China, Middle East, Europe and India – but there is one very noticeable difference. Indians don’t talk to anyone but listen intently to all our stories. No eye contact is made with anyone.

And what are our stories? They are mundane. What’s you diagnosis, that last chemo flattened me out, I finished a tub of ice-cream last week, I love your new hair cut, what are you making for dinner, did you see that match with Federer, Donald Trump is funny, I need snow tyres, etc. There is emotional support, a conversation that neither makes me feel like a victim nor a saviour. It makes me feel human, it makes me laugh and it has connected me back to a routine. It has also helped me speak about cancers as I do about a common cold. There are difficult moments, but they are just that – moments. I felt very human and normal when I spoke out in 2013.

A friend in India tells me his mother needs chemo thrice a week and he cannot take leave from the office. Another hasn’t told anyone in her family, yet another needs funds but is too ashamed to ask. These are deathly conversations. They are daily conversations. They are without hope, without a fight, without possibly a future. Doctors will tell you that cancer has to be fought emotionally and also in the head. The only way to do that is to speak it out and spit it out so it doesn’t eat you away from Inside. Depression is just one step away – mental health is also a public health disaster in India.

It is also deeply hypocritical to avail of the best advocacy mostly from the US – Europeans are waking up to it slowly – and criticise pharmaceutical companies in public. So what’s my stand on this? It’s a simple one. Drugs save lives and research goes on 24/7. We don’t see scientists and technology on the streets, but there is going to be a glut of new cancer therapies in the next few years. It takes billions of dollars to get one molecule to the market and here we see a mix of corruption and greed on the part of governments and pharmaceutical companies. There is a raging international battle about access, patents, health insurance, the role of the state, generics and more. Where is India’s voice? What is the percentage of drugs-related and research related start-ups in India? At the time of writing, I am still waiting for a response to this question from various Indian ministries.

This is where the battle is and this is where high-level advocacy must help. Rough and ready estimates say for every scientist there are 40 marketing and public relations personnel in big pharmaceutical companies. Almost all of the companies are beneficiaries of subsidies – land, water, tax and other resources – from governments and increasingly they get to sit on boards and discussions where pricing and research issues are decided. This is a major conflict of interest. This is where the injustice will grow especially when you think there are thousands of life-saving drugs in the market still out of bounds for most people.

Public health is a public good – the state has a strong role in leading this very difficult but vital conversation. It’s not about few people speaking up wherever possible. High-level policy advocacy for science, epidemiology, legislation and where necessary, litigation must come together to give India a public health movement. There are numerous examples in America, Canada, Brazil, South Africa, Thailand and Cuba – what are we waiting for?

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