I got this “link”:http://www.post-gazette.com/pg/05320/607301.stm from the GSDnet mailing list that I belong to. It got me thinking once again.. What is the price or value of life? Who determines it?
Pompe disease is a very rare illness affecting somewhere between 5,000 to 10,000 people in this world. Granted these are the number of registered cases all over and there may be more, still this is classified as very rare. In order to create a treatment for Pompe’s, millions have been spent in research and development. Some $500 million in fact and the cost is still climbing. Now divide this by the actual number of patients and you’ve got yourself one very expensive treatment.
Now this is not exclusive to Pompe’s, there are many other rare diseases that have or will eventually have expensive treatments. One of which is Gaucher’s disease. This is the disease mentioned in the link above. Cerezyme, a treatment developed by Genzyme, the same company that is developing a treatment for Pompe disease, has been available to Gaucher’s patients for several years already. At a cost of roughly $600,000 per year. Now that’s ridiculously expensive. That’s like buying a fairly large home every year, for the rest of your life.
The question now being asked, “Is the cost of treatment worth it?”….
My answer is yes. The price of life is immeasurable. No amount of money can be equated to a persons life. It’s indeed a tragedy everytime a person dies because he/she didn’t have the money to pay for medicine/treatment.
In a world wherein Paris Hilton is given a $4 million engagement ring just to wear on her finger or probably lock up in a vault somewhere, it’s hard to comprehend why we can’t use that money to save lives. We spend so much money on consumer goods (I’m guilty of that sometimes), yet we question the cost of treatments to improve lives.
Now I’m not saying that we shouldn’t enjoy the finer things in life but I guess we as a society need to find a balance. Lives above things.
In terms of business, Genzyme is making a profit out of selling their treatments. In fact it has made good business out of creating drugs for rare diseases. I personally feel that as long as they use their earnings to fund other treatments for other diseases, it’s ok. It’s fair to get rewarded for doing good work. Just make sure that it’s not at the cost of people’s lives. I do know for a fact that Genzyme is also trying their best to make sure patients get the treatments even if they can’t afford it. With Cerezyme, they’ve worked with Non-profit organizations, charities, government agencies in order to find funding for those patients who can’t afford it. Now this is something that I hope they continue to do.
Is the price of treatment worth it? Well.. only patients can answer that. I guess it depends on what we do with our lives. The second chance we’re given. That will determine if the cost of treatment is worth it. If we strive to fully maximize our lives and contribute to society as best we can, then yes, the price of treatment is worth it. We don’t know what each person can give to this world. We just need to give them the chance to do so in order to find out.
The next Albert Einstein may just be a Pompe patient….