Prasanna Shirol, Co-founder and Executive Director of the Organisation for Rare Disease in India (ORDI) recently joined NewsX for a conversation under its special segment News X India A-List series. Prasanna is one of the key pioneers in the field of health advocacy in India and the Co-Founder and ED of ORDI, a national umbrella organisation representing the collective voice of all patients with rare diseases in India.
Committed to spreading national awareness about rare diseases in India, Prasanna is a man with a perspective of leading healthcare advocacy to a point where it can aware people of what these are and the way forward. ORDI aims to function in the areas of awareness, advocacy, and patient support programmes. He has been instrumental in the healthcare advocacy initiative for the past 11 years.
Sharing his journey that urged him to start a foundation and give the people who are suffering from rare diseases a voice, Prasanna said “My 22-year-old daughter is India’s first Pompe patient which is a rare genetic and neuromuscular disease. It took us seven years to diagnose this disease after roaming across 40-50 hospitals in India. She was admitted to the hospital when she was 7 years old until then she was a normal child going to school. After a few years, she got admitted into the hospital where she was put on ventilators. At that time, there was only one medicine that was available in the world that is in the USA. We got connected to the International Parents Association and got a very costly drug. Once, when she was in college the ventilator got switched off and she suffered a major cardiac arrest and went into a semi-coma.” He added that this experience made him ponder upon two significant questions- what if the company stops making the only drug that there is for the treatment of rare diseases and what treatment facility does India have for people diagnosed with such diseases?
The quest of finding the answers led him to set up ORDI and that’s when Prasanna decided to be the change-maker in healthcare advocacy. Talking about the primary challenges that we face today in terms of rare diseases in India, he emphasised that there is a lack of public awareness. Certain stigmas around such diseases make it impossible for people to understand and plan the way forward.
“There are several kinds of rare diseases where 80% of them are genetic, out of this only 5% have FDA-approved treatment and needs to be managed. These diseases, unfortunately, are not recognised in India. We don’t know where do we fall in terms of healthcare as there is no definition, no data of patients. When it comes to the treatment of rare diseases, the cost range varies from Rs 1 per day to even Rs 2 crore per day for gene therapy. However, we don’t have any support for any spectrum of the condition of patients suffering from these diseases and are losing lives day by day,” added Prasanna.
Throwing light on the multifaceted challenges and the de-stigmatisation of rare diseases, he underlined that India does not have a proper healthcare policy for people suffering from these diseases and there is a dire need to bring out changes.
Prasanna asserted on annihilating the stigmas associated with rare diseases and urged people and especially parents to never lose hope and repent their child suffering from a rare genetic disease.
