[Assam] Orphan Drugs
uttamborthakur at yahoo.co.in
Sun Aug 22 19:13:02 IST 2010
I am not familiar with this subject at all; but a small write up on this made me think.
There are some rare diseases affecting a numerically very small segment of a population. Though search for the cure of a rare condition affecting eye and neck muscles led to the discovery of Botox, the anti-wrinkle agent, that has become a big business (including bootlegging of the substance), the search for the cure of such rare conditions are not undertaken by big pharmaceuticals.
It makes whole lot of sense in a capitalist market system which is driven by profit-motive. So, factors like huge cost of R & D, clinical trial and gestation period keep the financiers at bay. More so, when the chance of success with the project is uncertain, and the recovery of cost is dim due to the small size of the affected patient population. So, any researcher would not easily find a funder and the big pharmaceuticals would surely shy away, notwithstanding the fact that such research had yielded valuable knowledge, and in some cases bonanza, in the past.
So, if the things are left to the invisible hands of the market forces, the ideal form of capitalism, it would mean and imply that those damned by the rare conditions would not stand a chance, unless of course some freak finding in other field of research come for their deliverance.
On the other hand, even those who believe in capitalism as the ideal, and in fact considers it as the end of history, would consider this condemnation of the small segments of population, afflicted by rare diseases, as cruel.
To avoid this cruelty, even the citadel needs some contamination! The legislators' hands have substituted the invisible hands of market forces in the US, where an Act (Orphan Drugs Act) has been passed recently to give market exclusivity to a big pharmaceutical, which would involve itself in such a project, along with some other incentives. This may woo investment the rare diseases' way, because, in spite of the small size of an suffering population, market exclusivity would help the pharmaceuticals recover the cost with profits, and it may mean a windfall in case something like Botox comes up. No doubt, here too 'search for profit' would be the mainstay of ensuring finance. But the fact remains that it creates some sort of level playing field for small communities affected by rare diseases and the rest of the people affected by abundant diseases.
As an aside, it may be added that in India, the Constitution, makes room for concepts like 'reservation' 'autonomy' 'exemptions' etc. for certain categories of people with the declared goal of providing some sort of level playing field and also for protecting them from some misfortune, as groups.
Though such measures may seem odious from an elitist and advantaged view-point, and has in fact led to gross abuse primarily due to the nature of the ruling polity in India, those measures by themselves, may not qualify for loathing, as an elitist view of the matter would suggest.
P.S. To Ram Sarangapani & Deepankar Medhi: This seems to be an incurable trait in me; I fail to see the benefits of of compartmentalization.
Uttam Kumar Borthakur
More information about the assam