A Roar for Rare

“Wow, my son scored 88%”, shouted my dad, as I showed him my annual mark-sheet. Unlike my friends’ parents, my dad was quite contented with what I scored every year. I have seen my friends’ dad shouting “Only 92%?”. I must say I was lucky to have cool parents. Apart from good academics I and a lot of my friends had other talents as well. One of my friends was good at entertaining people with his observations and jokes (Stand-up comedy not being too famous during the early 2000s). All his talent was used to showcase how good he is in this just when guests used to arrive at their place. Little had they known that stand-up comedy would grow as a profession thick and fast, 15 years down the line.

As I keep learning in life from my experiences, I have seen a strange pattern that is followed by people I am connected with. We always tend to go after volumes. Follow the path, most taken. Because volume at least assures mediocrity, if not a genius. For example, if you take up a profession that is not followed heavily in the country (like stand-up comedy in the early 2000s) your chances of failing in life go way up compared to your chances failing if you take up engineering and other related fields. If not a genius, you will be a mediocre engineer, which is better than a failed entertainer.

We can see a similar pattern in the healthcare industry. It makes me wonder why patients suffering from rare disorders are ignored the most. The first answer is ‘Volume’. They are called rare disorders because there is no volume in number of cases. Researching for the diagnosis and treatment of rare disease is like considering becoming a Stand-up comedian in the early 2000s. Sometimes, I think it was my friend’s mistake to have a talent at a time that didn’t guarantee volumetric income then? Or is it a patient’s mistake to have a rare disorder that most people are safe from? This lack in volume makes the industry not focus on the disease and hence not many options available for management of the disease.

When I tried searching for statistics on rare disorders in India, I could find none. Lack of data speaks for the attention that rare disorders get. In some cases, the government even has intervened in manufacturing of some of the orphan drugs (drugs used for treatment of rare diseases). And there are some organizations like Strand Life Sciences that have started focusing on predictive diagnostics of rare diseases and providing genetic counselling support to the affected and their families. Recently I came across an open platform for Rare Diseases (OPFORD) where people can come together and share their experiences, knowledge and information on a particular condition.

Still, as a professional in the healthcare space, the question remains. Do we focus enough on rare disorders? Are we ok with ignoring the affected just because we don’t see a higher volume of business from catering to those areas? The answer should definitely be an emphatic No!

Strand employess supporting the #ShowYourRare World Rare Disease Day Awarenss Campaign on 28 February 2018