Patients with rare disease feel like “a burden on society” because of cost of treatment

[dajoki]

Cutting Dosage of Costly Drug Spurs a Debate
Gary Tramontina for The New York Times
By ANDREW POLLACK
Published: March 16, 2008
http://www.nytimes.com/2008/03/16/business/16gaucher.html?_r=1&oref=slogin

When a drug can cost more than $300,000 a year, the right dose becomes a matter of public debate.

The drug in question, Cerezyme, is used to treat a rare inherited enzyme deficiency called Gaucher disease. Some experts say that for most patients, as little as one-fourth the standard top dose would work, saving the health care system more than $200,000 a year per Gaucher patient.

<<snip>>

With Cerezyme, which is made by Genzyme, the profits are sizable. Gaucher disease, which can have complications like ruined joints, is rare; only about 1,500 people in the United States are on the drug and about 5,000 worldwide. Sales of Cerezyme totaled $1.1 billion last year, making it a blockbuster by industry standards.

<<snip>>

But critics say the company’s development costs were minimal, because the early work on the treatment was done by the National Institutes of Health, which gave Genzyme a contract to manufacture it. And analysts estimate the current cost of manufacturing the drug to be only about 10 percent of its price.

<<snip>>

Dr. Pramod Mistry, a Gaucher expert at Yale who receives some research funding from Genzyme, said he was caring for some of Dr. Beutler’s former patients who had become “very, very sick” because of under-treatment.

<<snip>>

Dr. Mistry says patients are already under too much pressure to reduce their doses. “They have a tremendous sense of guilt,” he said, “that they are such a burden on society.”

[alarimer]

1. Drug companies need to lower the price.

Those kind of profits are OBSCENE. Fucking vultures.

[varelse]

2. Is the drug that expensive to produce?

If it is not, then it is the pharmaceutical company that is placing the premium on profit over human life, and thus imposing the excessive burden on society. How sad that those suffering from this disorder are made to bear the guilt.

[Posteritatis]

3. Most drug costs come from R&D

Production is usually dirt cheap. Hell, less; good dirt's often harder to make well.

It doesn't excuse the current prices, of course, though it does at least explain part of them. The prices still disgust me. :P

[Hannah Bell]

4. and as the rticle sys, most of the r&d for this drug

was funded by the taxpayers. it's already been paid for.

the nih gave the corp a contract to produce the drug (which apparently allows them to rip off big profit margins).

corporate welfare.

[Juche]

6. about half

I think 40-50% of pharma research is funded by taxpayers.

If you want an eye opener read anything by Marcia Angell M.D. She rips pharma a new asshole.

http://www.motherjones.com/news/qa/2004/09/09_401.html

[dajoki]

7. Sounds about right...

drug makers spend 2.5 times as much on marketing and administration as they do on research.

[Hannah Bell]

9. In the case of this particular drug, though, looks like most of it was

taxpayer-funded:

"critics say the company’s development costs were minimal, because the early work on the treatment was done by the National Institutes of Health, which gave Genzyme a contract to manufacture it."

i.e. it was already "developed" by nih in order for manufacture to be contracted out.


I've read the pharmas spend more on marketing than r&d.

I've also read that some of the ballyhooed overseas pharma "aid" is in fact drug research on poor people - poor kids, especially. It's difficult to test drugs on kids in the US, but on african kids? No problem.

[dajoki]

12. Horrifying!! n/t

[NashVegas]

8. Marketing Costs Have Become Huge, Across the Board

Consider how often we saw pharm ads on TV and in magazines 20 years ago, and that will tell you where 1/2 of the expenses are incurred.

[DBoon]

5. Maybe the drug company could reduce its profits

because they are too great a burden on society.

[Hannah Bell]

10. I'll vote for that. If only we could, eh?

My father was one of those people guilted with the cost of his health care.

[dajoki]

11. That is terrible...

Nobody should be made to feel guilty about their healthcare, I'm sorry they did that to your Father.

[DangerDave921]

13. What the hell?

How does someone feel guilty for needing health care? That's just stupid. I have psoriatic arthritis, and I don't feel guilty. I take three meds for it, and you know what? I stand up and applaud these "vulture" pharmaceutical companies that have created these medicines that have given me back my life.

Before I got on meds, I couldn't even get dressed without pain in my elbows and wrists and fingers. I couldn't run. I couldn't play sports or play guitar anymore. My joints were killing me all the time. Even now on the meds, it's not always easy. I am still in pain with most daily activities. But it's far far less than it was before meds. I can play with my kids again in the backyard, I can play guitar, I can do most of the normal things most people take for granted. Why? Because these awful pharm companies invented these medicines to keep the swelling and joint damage in check. For that I am grateful.