Thoughts On Cashing In On Orphan Drugs

Aaron Smith of CNN Money wrote “an article titled Cashing In On Orphans”: last March 16, 2007 about how companies like Genzyme are cashing in on orphan drugs. I read the article and it was interesting to say the least. I have mixed feelings about it. Let me tell you why.

I’m happy in the sense that Genzyme, the company that makes Myozyme, Cerezyme and Fabryzyme, is able to turn a profit with these drugs. It’s a decent profit I might add. The article mentions that it’s standard for drug companies to put a 30% profit on their medicines. I’m not sure how much profit Genzyme has placed on these drugs but let’s just say it’s the standard. Why am I happy about it? Well it just proves that you can make money treating rare disorders. While I would rather have a world wherein people make drugs to treat patients not for profit but for the simple reason that it helps other people, we all know that our world isn’t like that. So I’d like the next best thing, a company that sees the need to help people with rare disorders but can still find a way to make money for their share holders. At least companies like Genzyme cared enough to find a treatment for people who suffer from rare disorders like myself. I’m happy because I’m alive as a result of Genzyme’s efforts.

Dann Quinn, Genzyme’s spokesman has this to say.

Genzyme spokesman Dan Quinn says that anyone who needs Cerezyme gets the drug, even if he or she is uninsured.

“We work to try to find [insurance] coverage for patients,” said Quinn. “But for patients who are not able to get insurance coverage, we do provide treatment free of charge.”

Quinn said that policy applies to all three of the orphan drugs.

I can attest to this. While Genzyme’s primary method of making money from the drugs is to find insurance companies, government or other organizations to pay for the drugs, when it’s really not possible they give the medicine for free. They’re trying to make sure that no patient will be refused treatment because of capacity to pay. In this respect, Genzyme is better than other drug companies. Some companies will turn away patients because they can’t afford to pay. That’s one of the biggest tragedies of this world, at least in my book. I’ve thought about it a lot and if I were in a drug maker, I probably wouldn’t be able to live with myself knowing that it’s within my powers to save a persons life but I didn’t because he couldn’t pay for my medicine. That just well… sucks.

Aaron Reames, analyst for A.G. Edwards, said that Genzyme’s practice of providing the drug for everyone in need is one reason why its orphans cost so much.

Sure Genzyme’s practice of providing treatment for all might be why the drug is priced so high. So?!? People are alive aren’t they? Isn’t that justification enough. Those who can, help those who can’t.

I can’t even believe we’re discussing the high costs of life saving medicines and in a way complain why they’re so high or look bad at a company for pricing a drug so high and yet it’s ok for other companies to charge thousands of dollars for a handbag, shoe or a dress. We don’t complain about companies who make million dollar jewelry to sell to a few. Now that’s making a ton of money out of rocks and minerals who serve no real purpose but to beautify someone. I can’t understand that.

Our society is prepared to pay millions for rare stones but not prepared to pay the same amount to save rare people. Where’s the justice in that?

Genzyme and other companies like it make money on orphan drugs. Heck they make a lot of money on it but at least they’re producing something that makes a difference. They’re helping people who otherwise would be left to suffer, worse left to die. I’m willing to live with that fact.

2 Replies to “Thoughts On Cashing In On Orphan Drugs”

  1. I definitely agree with you 100%. To begin with, only a few pharmaceutical companies even bother to research on interventions for children because of the small market. There is no way for these companies to make money the usual way – by bulk —- because unfortunately (for them)/ fortunately, the conditions they develop drugs for are astronomically rare. As much as we would like to wish for the altruism of drug companies, it’s very unrealistic to expect them to just break even and “think about the poor kids”.

    It’s absolutely hypocrisy in action, man and it’s great that someone like you is calling those who are quick to judge. Hopefully they read your view and get the bottom line of all this.

  2. Hi I am a nursing student… and this is the first time that ive ever seen your blog, and the first time that Ive ever heard of Pompe. Hmmm… i hope you’re fine. 🙂

Leave a Reply

Your email address will not be published. Required fields are marked *