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The Cost of Drugs For Rare Diseases Is Threatening the US Health Care System (hbr.org)
An anonymous reader shares an article: There are 7,000 rare diseases affecting 25 million to 30 million Americans. The average drug approved under the Orphan Drug Act of 1983 (ODA), which governs rare disease approval, costs $118,820 per year. Assuming a similar cost, if a single drug were approved under the ODA for 10% of rare diseases, the total would exceed $350 billion annually -- more than 10 percent of the total amount that America spends on health care and much more than the health care costs attributable to either diabetes or Alzheimer's disease and other forms of dementia. If this seems far-fetched, consider the two drugs for treating Duchenne muscular dystrophy that the FDA approved in the last six months: eteplirsen, which is sold by Sarepta Therapeutics and costs $300,000 annually per patient, and deflazacort, which is sold by Marathon Pharmaceuticals and costs $89,000 annually per patient. However, approval of such costly drugs exposes an uncomfortable truth: scientific discovery has outpaced health care economics. [...] In the United Kingdom, the National Institute for Health and Care Excellence (NICE) determines the cost effectiveness, or value, of newly approved drugs based on their impact on quality-adjusted life years. These determinations inform the National Health System's (NHS) treatment-coverage decisions. In contrast, the FDA is prohibited from considering cost or value in its decision making, and there is no U.S. governmental equivalent of NICE.
I wonder what's the markup on those drugs.
Are they that costly to produce?
...gis sdrawkcab (usually not responding to ACs; don't bother posting as AC)
We have a culture built around the concept that human life is worth any amount of money. At the end of our lives we spend and spend to pry out another 2 weeks of lifespan.
Instead maybe we should realize that with 7.5 billions of people, the value of any given human life is very close to zero. It sounds harsh, but it is also the truth. If people want to pay to save themselves, great have a go, but we should not be foisting that cost onto society when there is no rational reason. Spending those sums is absurd.
We don't even treat our pets in that way: we realize that life is finite, and we try to keep them comfortable at the end so they do not suffer, but we are willing to acknowledge that there is a time when it is best to let them go. Ease their passing so they can go in peace and as much comfort as possible. We need to adopt this attitude for people as well.
We're not a scattered band of 10K hunter-gatherers on the brink of extinction any longer. A random human life is simply not valuable.
What's threatening the US health care system is putting profit ahead of lives.
Good luck. You poor saps are going to need a lot of it.
Log in or piss off.
We all know these drugs have an insane markup. The drug companies are getting rick because they set astronomical prices for drugs the might help people, even a little. And they get it because insurance is forced to pay for it, not individuals who could never come up with the money on an individual basis. We have created the problem by mandating insurance and then letting the drug companies pilfer it blind.
This is just another facet of the problem that drug companies use U.S. public funding for the research to help develop most of these drugs, then turn around and charge the American taxpayer more for the drugs than they sell them in other countries, both third world countries like the African nations and first world countries like Canada. And, of course, they spend a lot on expensive lobbying to buy politicians to make sure we in America don't get access to those drugs they sell in Canada.
I'm an American. I love this country and the freedoms that we used to have.
Common statin's (for lowering cholesterol) can cost more than $700 for a 30-day prescription if you don't have insurance. I think the cost issue goes well beyond prescription drugs for rare diseases, and in fact, is more detrimental in a broader sense.
But, when we as citizens don't insist our politicians address campaign finance reform, policies favoring corporations will continue to guarantee price gouging will continue. Campaign finance reform should be made the top issue... Every. Single. Election.
The industry doesn't do much research. Not the expensive kind. They do a few clinical trials after the government has done the really expensive stuff (what's called "Basic Research", IIRC).
Also, what you're seeing here with these rare disease drugs is the style of capitalism popularized by Bane Capital: Find something undervalued and buy it up then extract the value for yourself. Usually this takes the form of liquidating the company. But in these cases they're selling life saving medicine. It's literally a matter of life or death (or a life worse than death). These are small markets with a high barrier to entry where the customers depend on the product to live. This is exactly the sort of thing no decent society would leave in the hands of unregulated capitalism. American on the other hand...
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You sound like a sociopath
..and who decides who's a sociopath? The Local People's Social Justice Friendship House, which of course has absolutely no ideological bias against private business? I'll pass. It's just replacing one form of tyranny with another.
There might be other solutions that could help. For example, if it is true that those companies are squandering large percentages of money on things like advertising, perhaps only allowing it to be funded from a set percentage of profits from sold product would be enough. This would hopefully limit the waste of research money on irrelevancies. While still not perfect, this is better than the witchhunt you suggested. Those never end well.