Tuesday, February 15, 2011

Orphan


UNITED STATES - **Warning: This post is about neither cancer nor hockey. History and Law from this point forward, just to issue a spoiler alert.**

You've heard of all the biggies - cancer, diabetes, heart disease. I bet you haven't heard about glioma or myasthenia gravis. They're what's known as "orphan diseases", and in the United States, there is a called the "Orphan Drug Act" that I find absolutely fascinating.

Orphan drugs were created to treat these very rare medical conditions. The economics of the world drug market makes it almost inconceivable that a manufacturer would create medicine for anything that would have a small market; perfectly logical in an capitalist society. And make no mistake, those large drug companies are able to offer incredible discounts to people who can’t afford their products, so there is a tangible philanthropic effort tied to type of economy.

This Act, passed in January of 1983, encourages drug companies to develop drugs specifically for conditions with a low number of affected people (less than 200,000 in the United States). It is actually a financial burden for companies to do that, were you aware? They simply are unable to make a profit unless the numbers are bigger; a staggering realization. How amazing that we, as a nation (in the form of the FDA) were able to step up and say, "Hey, we know this wouldn’t make sense for you to create. Let us help you assume some of the cost so that we can save as many lives as we can." Ok, those are my words and not those of the FDA. I extrapolated, I am sure they won’t mind. I always extrapolate as I read congressional acts, I mean come ON I know you do it, too.

Every week, new rare diseases are discovered and they are without treatment. To date, there have been 350 orphan drugs approved for sale in the United States. These small but important discoveries have helped ALS, MD, Huntington's, to name a few. Since the beginning of the new year, 25 drugs have been designated by the FDA as treatments. (You can search this cool database to see all the treatments being developed on the FDA's website.)

I tell you this as encouragement, my friends. It may seem like everything is only made for the big crowds, the popular kids. Every once in awhile, the hearts of the people speak out and allow absolute generosity. Thank you, my United States Congress, for reaching out your hands and helping to lift up a handful for the betterment of all.

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