At thirty-four, my life was rocketing upwards. Coming from a village Malayalam medium Government school, I had managed to get a fantastic rank in JEE- the entrance exam for IITs. I had completed my B-Tech in electronics and then my MBA, and at 34, I was the youngest COO in India’s telecom Industry, with dreams of becoming the global CEO of a Fortune 500 company.
That is when disaster struck. I was afflicted with a debilitating disorder, Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). My own immune system was attacking my peripheral nerves and causing disruption in nerve signalling, leading to wasting of muscles. By the time I was 40, I could barely walk, couldn’t use a fork or spoon, couldn’t even lift a glass to my mouth and couldn’t button up my shirt. Life was hell.
The traditional medication was IVIG (an enormously expensive intravenous infusion) and steroids. These were not very effective in my case and I was running up an annual medical bill of upwards of Rs.20 lacs. The side effects were drastic: I put on 12 kilos and had t have cataract operation in both eyes. At the height of my illness, I also got sacked from my job.
Fortunately, I have a never-say-die attitude and believe every problem has a solution. I kept searching for alternate treatments and came across a clinical trial at Northwestern Memorial Hospital, Chicago and enrolled for it. The treatment consisted of rebooting the body by first knocking out the errant immune system using chemo and other drugs and then regenerating it using one’s own blood stem cells. I was just the 19th patient with my condition going through it. Luckily, it worked for me and my condition was reversed almost completely. The treatment not only rebooted my body, I was able to reboot my life, with my new Avatar as the author RamG Vallath, writing my first book ‘Oops the Mighty Gurgle’, a wacky humorous science fiction for kids, from my hospital bed. Today I am a motivational speaker and have delivered my talk about converting every downturn into a success to over 50 companies and 30 schools. I am the founding editor of a free science magazine, ‘I wonder’, aimed at school teachers. My second book, the autobiographical ‘From Ouch to Oops’, has been a bestseller and now my aim in life is to touch a million lives positively.
None of this would have been possible if I had not undergone a clinical trial. This makes me wonder why on earth there aren’t many more clinical trials in India? Why is this a bad word here? Everyone from NGOs, Policy makers, politicians and MNCs seem to have a say in whether we should allow clinical trials in India. Why is nobody asking the patient? There is an underlying assumption that the patients have no clue what is good for them and are uninformed masses. I believe it is the patient who has the first right to decide whether they want to undergo a clinical trial or not. It is the responsibility of the rest of the system to make a sufficient number of trials available by fostering a climate of innovation and transparency. Sure, there is risk in a clinical trial, but the only one who takes the risk is the patient. This makes them the primary stakeholders in my opinion.
I have taken it upon myself to support people with rare autoimmune disorders. I get hundreds of patients reaching out to me for help. Even people with unrelated disorders – sometimes, terminal conditions- reach out to me. I feel terrible when I cannot help many of them. That is when I wish we had a more open climate for clinical trials in India, where the number of clinical trials conducted is closer to the 20% that is the disease burden in India as a percentage of global diseases, instead of the abysmal 1.4 % of the number of global clinical trials. Think of the patients – that is all I request of the ecosystem. We deserve it.
About the author – Ramgopal Vallath (RamG Vallath)
In his attempt to maximise life and spread happiness, RamG is spread so thin he has lost 20 kilos weight! Today, he is a bestselling author, much sought after motivational speaker, a science magazine founding editor, a start-up co-founder and a science enthusiast who delivers science workshops to school children. He completed his B Tech from IIT Madras and his PGDBM from XLRI. He has held many CXO level jobs such as COO of Airtel, Director at HP, Director at Dell etc. He can be contacted at [email protected]