Let me put this disclaimer first: doctors out there reading this post, please understand that the idea that I am about to explore is not some kind of patient revolt or Bolshevik-style insurrection on our health system.
Let me also admit that at the ground level, you all are doing an excellent service treating patients in general and ophthalmic patients in particular.
But I’m sure most of you would agree that the R&D system concerning health in this country is such a non-starter that there needs to be something done about it.
We don’t expect a medical boycott or a doctors’ strike on lack of R&D opportunity in India, because most of you find research work elsewhere in the globe.
It only leaves the patients to handle the situation for ourselves.
Especially in the case of conditions like Retinitis Pigmentosa (R.P.) and similar retinal diseases, many of us desperately look at news trickling out of other countries with the yearning to get it in India, but knowing full well that our system doesn’t waste its time on us and would prefer to focus instead on several ‘large scale’ (or preventable) eye issues among the Indian populous.
So, as you could see, it needs a bit of “people’s power” to get what we want in here.
Not that you neglect this. I recently heard of efforts by a group of doctors to get guidelines for gene related medical work in India. I am vague about that initiative since I right now have very few details on it. But yes, patients do understand your efforts and initiatives and see if we can give a greater push to it.
While Indian market after the market oriented reforms (which we call liberalization) has become a haven for buyers and consumers, the same isn’t exactly true about our health system.
In fact, it resembles how things were in the pre-reform days. You could get to health heaven if you can afford and if you can’t then all you could find is a token support and a state-run system worse than hell. Ophthalmic hospitals, at least in Chennai (Tamil Nadu state) and Bangalore (Karnataka state) show efficient functioning, but lesser said the better about most state-run health facilities.
Unfortunately, the diseases don’t understand the system and don’t leave the less fortunate alone.
We wouldn’t like to blame it on fate or some previous sins that we have R.P., have become blind and are left absolutely without any medical option. Consumers have a say in every industry or sector, then why not patients choose what kind of treatment they want? Especially when researches abroad make a spectacular progress towards curing retinal diseases.
Why should they depend on the system when they could use the cloud funding model, build the money power and decide the kind of research they like to be done in India?
A lot of us have accepted our conditions and moved on with life, but there are a lot many out there, young and hearts brimming with desire, who believe in newer possibilities science, technology and market conditions have provided.
They wouldn’t like to accept their blindness, though many are already doing something about their lives.
They, like many of us two or three decades ago, are hoping that they would one day see this world, and find S&T and market forces giving them at least a fighting chance.
These are the kind of people, young, energetic and with never-say-die attitude who would like to work with the medical research community and see if their fighting chance can be converted into a realistic possibility.
So in the end, this could be a revolution indeed, Bolshevik-style or not, but one in which all of us would win and all would grin in pride of what we have achieved if we ever manage this.
**Association of Persons with Rare Eye Diseases (APRED) is looking for volunteers for some of our projects. We are approaching students, employees of corporate houses and other social-minded individuals. Those interested could write to either email@example.com or firstname.lastname@example.org