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Posted by on Jan 3, 2008 in Health, Society | 6 comments

Overlooked but Not Forgotten


In the hooplah surrounding today’s caucuses in Iowa and the anticipation of New Hampshire’s primaries next Tuesday, here’s a calendar entry that will probably be overlooked by many: tomorrow is the 25th anniversary of the signing of the Orphan Drug Act (ODA).

Who cares? Well, our family does, along with millions of others. We care because we all know someone who lives with one of 7,000 rare diseases — ailments that individually affect fewer than 200,000 Americans but in aggregate touch the lives of an estimated 25 million.

Given the relatively small population affected by each of these disorders, research into the causes and the development of treatments and/or cures has been limited, although such R&D is certainly more expansive today than it was on Jan. 4, 1983 when the ODA became law.

According to the press release distributed by the National Organization for Rare Diseases (NORD):

In the decade before the Orphan Drug Act was passed by Congress and signed on January 4, 1983, by President Ronald Reagan, only 10 treatments had been developed for rare diseases by the pharmaceutical industry. In the 25 years since then, more than 1,100 treatments for rare diseases have entered the research pipeline and more than 300 have been approved by the U.S. Food and Drug Administration for marketing. In addition, the Act has proven to be a potent catalyst to the growth of the pharmaceutical and biotechnology industries in the United States.

… In the past, these diseases of low prevalence were overlooked by drug and medical device developers. The Orphan Drug Act provides financial incentives that help companies recover the cost of developing a drug for small patient populations.

This case is one of those where my small-government, federalist principles take a holiday, while I sing the praises of the reach and effectiveness (yes, I said effectiveness) of the Washington establishment; where I recognize all too well that the states acting alone could not have devised or supported such breakthroughs.

Twenty five years ago, I was preparing for my final semester of high school and looking forward to college and career and whatever the future might bring — arrogantly, blindly believing I would be a self-made man and thus never require the beneficent hand of government.

Today, my son is preparing for his final semester of high school and looking forward to college and career and whatever the future might bring — knowing full well that it was the beneficent hand of government two-and-half decades earlier that set up a system whereby drugs could be created that would help him manage his Tourette Syndrome and thus contribute to a life filled with hope and promise.

And that, my friends, is progress.