A discussion at work today made me realize that there is a very important long tail in medicine. While Chris Anderson may have explored this already in his blog or in a chapter of the book I haven’t read yet, the long tail of medicine is the large number of diseases that we have yet to understand or cure.

There are traditional “orphan” diseases which affect fewer than 200,000 people in the United States each year. Because of their low prevalence, little direct investment has been made by NIH or industry in research to understand them or to develop new treatments for them. One example is Ewing’s sarcoma, which affects only 200 kids and young adults in the US every year.

These orphan diseases certainly fit into the long tail of medical progress, and I hope that the recent proliferation of biotech firms will find a way capitalize on the long tail. Of course the difficulty here is that there is no enabling technology like the internet to make research into diseases in the long-tail of medicine possible. We’re missing that single gateway through which new treatments can be developed for multiple diseases. If book-lovers have Amazon and music-lovers have iTunes, Rhapsody, and others, what is the equivalent in the field of biomedical research?

The human genome revolution was supposed to open the doors to something like the long tail. Academic institutions around the country are trying to figure this out. The Broad Institute in Boston was created for just this purpose – turning the genomic data into medicine.

I don’t think there is anyone would would dispute that we have made major advances. But I’m not sure the results have lived up to the hype in the late 90s. The question is not why this didn’t enable the long tail the way the internet did, but rather, what kind of technological innovation do we need to make this possible?

Biomedical research is a lot more expensive than storing digital audio files. And when we purchase a brand name drug, we’re paying for the millions – if not billions – of dollars that went into developing that drug and the 30 (or 50, or 100) drugs that they invested in but failed during development. Thus far, the model for pharmaceutical companies has been to go after the blockbusters at the head of the tail. And this has certainly become more true as the industry has felt the pressure of expiring patents, and the pipeline of drug candidates dries up.

So what is the technological innovation that will make the long tail make sense for medicine? How can biomedical research and the pharmaceutical industry take advantage of these new economics?

I apologize, but I don’t have the answers for you tonight. I wanted to start the conversation and see if we, in the long tail of the internet, can come up with some ideas.

Update: Chris Anderson does have a post about the long tail in medicine. He deals more with the market for drugs in the long tail, so thoughts on how to make this profitable are still welcome!