Glybera : shoved into the valley of death, business abuse of science? - Page 1
Forum section: electronics / general

author: 3roomlab
author_rank: Frequent Contributor
timestamp: July 02, 2019, 07:07:43 pm
content: I am just posting this as it is an interesting story, science vs business.https://en.wikipedia.org/wiki/Alipogene_tiparvovechow much does it really cost to make such a gene therapy?Glybera, cost of treatment (by the time "legalities" are settled) $1million.from business perspective, if it is not profittable due to low volume, why did they not sell it to the government in the first place?

author: Zero999
author_rank: Super Contributor
timestamp: July 02, 2019, 07:56:23 pm
content: Yes, it's crazy. One day the patents will expire, then hopefully someone, perhaps a government will use it in their public health system.Governments should really set up public drug companies: it's the only way to prevent this from happening.

author: ebastler
author_rank: Super Contributor
timestamp: July 03, 2019, 07:02:55 pm
content: Quote from: Zero999 on July 02, 2019, 07:56:23 pmIt seems that the IP rights are not what's making the drug unaffordable. The Wikipedia article states that the rights (exclusive & perpetual license for Europe, as I understand it) were sold for a mere $31 million in 2015. Maybe the cost for keeping the marketing authorization active, and the actual cost of making the drug are significant. The latter is suggested by the fact that the current license holder had only three doses on the shelf when they discontinued the drug.QuoteOh yes! Just like the government-owned LED lighting and switching power supply companies I keep seeing advocated here!

author: Zero999
author_rank: Super Contributor
timestamp: July 09, 2019, 09:20:13 am
content: Quote from: ebastler on July 03, 2019, 07:02:55 pmGovernments run plenty of services, more efficiently than private companies do, such as healthcare and education.The problem is that the health system is mostly public, at least in Europe, yet the pharmaceutical companies are private. Creating a drug company or perhaps service would be a better term, who's focus is on saving the public health system money, rather than profit would be a good idea.

author: ebastler
author_rank: Super Contributor
timestamp: July 09, 2019, 10:02:23 am
content: Quote from: Zero999 on July 09, 2019, 09:20:13 amIn Germany, most of the actual health services are provided by private operators: Nearly all doctors and diagnostic labs, as well as many hospitals, are private. But most people's health insurance, i.e. the funding mechanism, is public. So there is an (indirectly) government-controlled mechanism to define which treatments are refundable at all, and at what price tag.Exactly the same applies to drug development and production, with privately owned pharma companies and publicly funded drug treatments.While that is not a perfect mechanism, it has its merits: The public decides what it wants to pay, and private organizations figure out cost-effective ways of providing those services. I doubt that government-operated clinics, labs or pharma companies would operate more (cost-) effectively.Whether you want to "afford" treatment of rare (orphan) diseases, where development of a therapy is expensive and the number of treatments is small -- that will always be a decision of thefundingbodies. They would have to be willing to pay the high price per treatment. Whether thedevelopmentof the therapy is done by a public or private entity seems of secondary importance to me.

author: Mr. Scram
author_rank: Super Contributor
timestamp: July 09, 2019, 10:30:39 am
content: Quote from: Zero999 on July 02, 2019, 07:56:23 pmThe problem with public drug companies is that it works in the short run, but likely negatively impacts research efforts into new drugs in the long run. Research is frighteningly expensive, probably more so than people imagine.

author: Zero999
author_rank: Super Contributor
timestamp: July 09, 2019, 11:25:17 am
content: Quote from: Mr. Scram on July 09, 2019, 10:30:39 amI would say the same about privately run drug companies. The problem is they will always invest more in what will turn a profit, rather than what will generate the most cost effective treatments, so no, it doesn't really work.In this instance most of the research was conducted by a public university. The drug company only got involved when it came to getting approval and bringing it to market, because as the video said, universities don't make drugs. That could easily be changed to avoid situations like this.It's quite possible this would be a dead end anyway. If actually making the drug is very expensive, due to the small volumes, because there's such a small demand, then it's doomed to fail anyway.

author: Mr. Scram
author_rank: Super Contributor
timestamp: July 09, 2019, 11:55:55 am
content: Quote from: Zero999 on July 09, 2019, 11:25:17 amThe problem is that it's much more complex than that. Public funding is often just a small part it when it comes to research like this. Private and commercial parties provide large amounts of funding too, not in small part because they get to benefit later. If we want public drugs, we better be prepared to start paying up.

author: Psi
author_rank: Super Contributor
timestamp: July 09, 2019, 12:23:39 pm
content: Since it's known that this drug can be made i wonder how long until someone smart, perhaps with the disease, figures out how to reproduce it in their home lab and curies themselves on YouTube showing the entire process.Maybe not possible now, but given improved technology and lower equipment costs, in the future we might see drug companies lose lots of money from people making drugs for themselves.It would be an interesting situation to see a drug company try to sue an individual for patent infringement because they cured themselves of a disease.I think it would highlight the problem and lead to law reforms.

author: Mr. Scram
author_rank: Super Contributor
timestamp: July 09, 2019, 04:22:16 pm
content: Quote from: Psi on July 09, 2019, 12:23:39 pmIndia is already ignoring patent law and producing patented drugs for less. It's a bit of a tragedy of the commons dilemma.https://www.forbes.com/sites/johnlamattina/2013/04/08/indias-solution-to-drug-costs-ignore-patents-and-control-prices-except-for-home-grown-drugs/#e8a85182cba7

author: SiliconWizard
author_rank: Super Contributor
timestamp: July 09, 2019, 04:45:39 pm
content: Quote from: Zero999 on July 02, 2019, 07:56:23 pmYou're going for an heated debate here! There are advocates of liberalism who will oppose this with hundreds of reasons, and advocates of the opposite side which will rather agree with you.The problem is that most democratic regimes in developed countries these days are not liberal, but are often mistakenly seen as being so.There is so much lobbying and so many intricacies between public and private in our western countries (which shows we definitely are not in true liberal regimes actually) that setting up public companies at this point would not change anything much IMO. But I get the idea. (And anyway, the current trend, at least in the EU, is the opposite: selling what is left of public companies to the private sector. Going in the opposite direction would require much more than just a country-wide, individual decision. It's pretty much impossible at this point.)As it is, there IS public funding. It may be a small part, but that could change. Governments could, on some strategic projects, grant much larger public funding with some conditions (for instance, a reduced patent duration and/or requirements about target price). Would private companies not be interested in such deals and prefer 100% private funding without any of those conditions? I don't know.

author: Zero999
author_rank: Super Contributor
timestamp: July 09, 2019, 05:00:25 pm
content: I see your point we don't necessarily need public drug companies, but more publicly funded drugs, with contracts in place to ensure companies don't rip the government off.No, it won't negatively impact efforts to research new drugs, because the whole point of public funding is to find drugs which will benefit society, but not necessarily be highly profitable.It's also a myth that just because something is publicly owned, it doesn't automatically make it less efficient. What causes inefficiency is when the market forces don't work and healthcare seems to be one of those areas where they don't.

author: windsmurf
author_rank: Frequent Contributor
timestamp: July 12, 2019, 05:24:58 am
content: Quote from: Psi on July 09, 2019, 12:23:39 pmCompletely doable. Justin Atkin of The Throught Emporium already cured his lactose intolerance through DIY gene therapy.

author: Psi
author_rank: Super Contributor
timestamp: July 12, 2019, 06:10:33 am
content: That's awesomeIt's a sad fact that it's way more profitable for the medical industry to managing the symptoms with medication rather than to cure the problem.

author: Zero999
author_rank: Super Contributor
timestamp: July 12, 2019, 09:32:48 am
content: Quote from: Psi on July 12, 2019, 06:10:33 amI haven't watched the video yet, but I'm aware that it's more profitable to treat symptoms, rather than cure, which is why the market isn't working. I'm all for capitalism and people making money but only where market forces work.

author: ebastler
author_rank: Super Contributor
timestamp: July 12, 2019, 09:59:06 am
content: Quote from: Zero999 on July 12, 2019, 09:32:48 amIf companies A and B have treatments for symptoms on the market, and company C has a working concept for a cure -- what "market forces" should stop company C from developing and selling the cure?

author: Zero999
author_rank: Super Contributor
timestamp: July 12, 2019, 01:54:42 pm
content: Quote from: ebastler on July 12, 2019, 09:59:06 amNothing in theory, but in practice it doesn't seem to be the case. Company C most likely won't bother and invest in a treatment for something else, because it's more profitable than a cure.

author: windsmurf
author_rank: Frequent Contributor
timestamp: July 12, 2019, 06:49:58 pm
content: Quote from: Zero999 on July 12, 2019, 01:54:42 pmYes. Why cure something which eliminates them as a future customer, when you can keep pumping them for cash their entire life?Even non-profits such as Susan G. Komen Foundation are complicit.https://www.huffpost.com/entry/why-i-am-antikomen_b_4975991

author: ebastler
author_rank: Super Contributor
timestamp: July 12, 2019, 07:08:31 pm
content: Quote from: windsmurf on July 12, 2019, 06:49:58 pmYou know, ah, different companies? Competing offers? Competition... I am sure I have heard the term mentioned in connection with capitalism...

author: Zero999
author_rank: Super Contributor
timestamp: July 12, 2019, 07:50:16 pm
content: Quote from: ebastler on July 12, 2019, 07:08:31 pmWhich is fine when it comes to selling things like cars, phones, food etc. but doesn't really work so well with drugs. If it did, then we'd have things such as new antibiotics being developed, but they're not profitable so no one invests in them, even thought they're badly needed.

author: NiHaoMike
author_rank: Super Contributor
timestamp: July 12, 2019, 08:56:16 pm
content: Quote from: Zero999 on July 12, 2019, 07:50:16 pmMain problem with cheap antibiotics is that they're being misused for factory farming, making a near perfect environment to breed bacteria resistant to those antibiotics.

author: Mr. Scram
author_rank: Super Contributor
timestamp: July 13, 2019, 12:42:44 am
content: Quote from: Zero999 on July 12, 2019, 07:50:16 pmThe problem is that antibiotics are losing their potency at an alarming rate because they're being abused and overused. No kidding companies have issues with investing a huge pile of money into something they are unlikely to sell for a decent amount of time before it's all ruined. Of course antibiotics development is actually being done, but it's hard to outpace the phenomena described above. Companies aren't refusing to develop, we're collectively ruining a good thing in an excellent example of the tragedy of the commons.People seem to severely underestimate the complexity of the situation and this thread is a fine example.

author: windsmurf
author_rank: Frequent Contributor
timestamp: July 13, 2019, 02:39:42 am
content: Quote from: Zero999 on July 12, 2019, 07:50:16 pmExactly. Developing new drugs is enormously expensive... drug companies don't want to spend money on research, drug trials, etc. on one-time-use cures, unless they can sell in large enough quantities to make a profit, or smaller quantities at exorbitant pricing. Investors in Glybera aren't ready to lose money on their investment just yet... I think they're waiting for the next billionaire's son/daughter to inherit lipoprotein lipase deficiency so they can cash out with a profit. That's capitalism.https://www.medpagetoday.com/blogs/revolutionandrevelation/72407

author: windsmurf
author_rank: Frequent Contributor
timestamp: July 13, 2019, 02:44:43 am
content: Quote from: 3roomlab on July 13, 2019, 02:34:49 amAntibiotics are used against bacteria, not viruses.Swine Fever is caused by a virus; it's a highly contagious haemorrhagic viral disease, much like Ebola.

author: 3roomlab
author_rank: Frequent Contributor
timestamp: July 13, 2019, 02:57:05 am
content: Quote from: windsmurf on July 13, 2019, 02:39:42 amjust out of curiosity, does the normal health insurance in USA pay for such a treatment? or it is classified under uncovered?

author: CatalinaWOW
author_rank: Super Contributor
timestamp: July 13, 2019, 03:13:22 am
content: I don't have any facts, so am perfectly suited to join the discussion. I do know that previous comments glibly ignore things like economies of scale, investment costs and the like. Those in this forum are used to electronics where even though the investment in a new semiconductor fab is billions of dollars, the market is literally many, many millions of pieces, so the cost per piece can be relatively low.It is quite easy to image that the real costs of making one of these designer drugs could be quite high, and if the market for that drug is in the tens or hundreds the cost would have to be enormous. This isn't a private vs public discussion, it is just the very real fact that doing complex things like memory chips or large custom molecules is hard.Now throw in some other complications. If your memory chip is bad you throw it away and buy another. Maybe you complain to the vendor and get a replacement. If your custom molecule is defective, someone doesn't get well, or gets very sick or even dies. Which in the US can easily lead to huge legal judgements, and I'm sure has more negative implications worldwide than just replacing a chip.Finally, for all the holes in our knowledge of solid state physics, we understand it far better than we understand the human body and its various mechanisms, systems and failure modes. It is just a fundamentally tougher problem.If anyone had an easy answer it would be in place somewhere around the world. Even if the megacompanies did their best to stop it and were somewhat successful in some countries and some regions.No question that it can be done better, but I suspect we can only expect incremental improvement, much like battery development.

author: windsmurf
author_rank: Frequent Contributor
timestamp: July 13, 2019, 03:53:23 am
content: Quote from: 3roomlab on July 13, 2019, 02:57:05 amInsurance companies, being a for-profit enterprise, are unlikely to cover it. They usually have a list of "approved" drugs and treatments. Even if a doctor determines you need a particular therapy, if its not on the insurance company's list of covered procedures or drugs, it'll be denied, and they have every right to deny, as it is outside their insurance obligations.Also medical insurance in the U.S. always come with lifetime limits on how much they will pay, even for covered procedures or drugs. This has led to medical debt being the number one cause of personal bankruptcies in the U.S.https://www.cnbc.com/2019/02/11/this-is-the-real-reason-most-americans-file-for-bankruptcy.html