With respect to cancer drugs, while generally no one can be prescribed medication that has not passed clinical trials, in the case of terminal patients who could potentially be saved by a drug currently in trials, there is a system for allowing them access to the medication.
The other reason why data sharing is hard is because it costs on average over $1,000,000,000 (1 billion USD) and 10 years of time to whittle over 10,000 drug candidates into a single new FDA approved NME (new molecular entity).
If you spent a billion dollars and a decade on a project, you will consider the data you collected to be a trade secret and would protect it with everything you can, because you have to now take this drug to market and make up the billion you spent making this drug. If you simply shared all your results, foreign competitors will simply copy your work without paying you, and will then offer your product without the cost of R&D and regulation built in: AKA they will charge 1/10 or less than you and you will struggle to profit anywhere they are in the market.
This is a good argument for government funded R&D, and government owned drugs.
They cost a ton of money and take forever to create, so the product becomes very expensive, and rights to it are owned by the creating company.
The government empowers a body to regulate the flow of new drugs on the market, and once the drug meets regulatory requirements, the government - in many cases - pays on behalf of the patient.
A company is interested in making a profit on their time investment, whereas the government could be content to break even (for the good of their citizens).
If the government instead paid a company to do the R&D, maybe even providing access to approved facilities where the work is to be done, the government could then retain ownership of that product and then create agreements with drug manufacturers to produce those drugs.
This solves a couple of problems, like sole producers of a product arbitrarily increasing prices (it is expensive and time consuming to set up production for a new drug, even if it is off patent), as well as supply issues (I don't think right now the FDA has any rules saying a drug company must be able to supply a certain amount of a drug to get their license to distribute).
A good argument against government funded R&D is that several of our modern medical challenges have been deeply embroiled in political debates.
AIDS/HIV(originaly called GRID) was originally considered a punishment for gay men who were seen in the 80's as being immoral and sinful by the establishment. Government-funded R&D for AIDS drugs would have been unlikely for decades.
Another example is hormonal birth control. Birth control in general is a huge political football with portions of the establishment wanting no access to birth control at all. If R&D were government funded it's possible for these people to prevent access simply by making funding of certain lines of research illegal.
I think you have to look beyond the price of treatment to really see the benefit of a healthy private enterprise here. There are still a ton of ways that government contributes to new treatments, like grant funding for basic research and development. But I can see your proposed future becoming a dystopia, where whoever is in power in government makes it illegal to sell certain patented drugs to their particular underclass of the week.
> If you spent a billion dollars and a decade on a project, you will consider the data you collected to be a trade secret and would protect it with everything you can, because you have to now take this drug to market and make up the billion you spent making this drug.
You would also be heavily incentivized to make sure the numbers show that your drug is effective, with very limited side effects..
You can try to fudge your data but the FDA is the most rigorous science based regulator in America and possibly the world.
And, the FDA monitoring of drugs requires more than Phase 1-3 clinical trials (which cost hundreds of millions of dollars to produce some of the most rigorous science in human history), but they also do post-release data analysis (so called Phase 4), and have even recently pulled drugs which are not meeting the Phase 2 and 3 standards for safety and efficacy over existing treatments (not efficacy over placebo, the results must show efficacy also over existing drugs).
Not to mention, the FDA fines of pharma corporations are some of the largest fines in American history.
So with the FDA you have
* A regulator using science forcing big business to spend 10 years creating scientific evidence that their product is safe and effective. No other industry on the planet has these requirements.
* A regulator using market data to actively govern products and pull products which aren't safe and effect (pretty normal)
You might find this surprising but pharmaceuticals is a money losing industry in the long term. Most of these companies are looking pretty bad, they're spinning off any division which could potentially be profitable (biologics, medical devices maybe) but your average business of finding new drugs? It's not profitable, the regulation is so intense and the work is so hard and competition which ignores intellectual property is so damaging that it's very likely most major pharma companies will go bankrupt in the coming decades.
When you compare how much science the FDA makes drug companies do to any other industry, food, finance, supplements, makeup, cars, houses, anything at all... nothing else compares. A forensic audit is nothing compared to a Phase 3 clinical trial. Far less goes into proving a car is safe than a drug. Etc.
The FDA is doing incredible scientific work with an extremely thin budget.
It's called "Expanded Access" (also known as "Compassionate Use") https://www.fda.gov/news-events/public-health-focus/expanded...
The other reason why data sharing is hard is because it costs on average over $1,000,000,000 (1 billion USD) and 10 years of time to whittle over 10,000 drug candidates into a single new FDA approved NME (new molecular entity).
If you spent a billion dollars and a decade on a project, you will consider the data you collected to be a trade secret and would protect it with everything you can, because you have to now take this drug to market and make up the billion you spent making this drug. If you simply shared all your results, foreign competitors will simply copy your work without paying you, and will then offer your product without the cost of R&D and regulation built in: AKA they will charge 1/10 or less than you and you will struggle to profit anywhere they are in the market.