How do you distinguish between "this patient is making an informed decision to opt out and use this unapproved drug" and "this patient is an idiot who thinks that throwing money at a "doctor" to mainline bleach will cure his disease"?
First, many (most?) medical advances seem crazy and kooky because they haven't been tried before. So it's not usually as obvious as "this is a proven scam" vs. "this really works". It's much more frequently "this is unproven". And like Barry Marshall's famous self-experiment with H. pylori, someone has to be first for it to ever get proven.
Second, when the government gets it wrong, it gets it catastrophically wrong. The USDA Food Pyramid recommending "6-11 servings of grain" is still being slavishly followed, and in the fullness of time we might well find it partially responsible for the epidemic of obesity and type II diabetes. The FDA is still doing Phase I/II/III clinical trials despite all the evidence in favor of adaptive trials. And tens of millions of people were irradiated by TSA x-ray scanners fast-tracked through the FDA approval process, scanners criticized by UCSF scientists, scanners which have now (finally) been withdrawn. These errors are magnified in impact because no one can opt-out, because a .gov has a bully pulpit, and because strong political incentives exist to silence criticisms.
Third, if people have the right to euthanasia, or the right to walk near bridges, I do believe they have the right to try what treatments they want. Frankly I don't consider someone else's medical affairs my business, anymore than I'd ask why they had an abortion. You can argue that vaccinations present a public health issue, and I might agree with you there. But otherwise this strikes me as a right to privacy and right to bodily integrity issue.
btw: "mainlining bleach" is not an exaggeration: http://www.youtube.com/watch?v=H7tkyK8r3yw
People can inject just about anything they want into
themselves
http://www.leagle.com/xmlResult.aspx?page=4&xmldoc=19981...
In Court, Plaintiff argued that he should have the right to
take whatever treatment he wishes due to his terminal
condition regardless of whether the FDA approves the
treatment as effective or safe, and that to prohibit him
from taking the treatment he wishes violates his rights
under the United States Constitution.4 The United States
Supreme Court previously addressed and rejected this
argument in Rutherford. In Rutherford, cancer patients
requested the right to use Laetrile, arguing, as does
Plaintiff, that for terminally ill patients the
effectiveness or safety of the proposed treatment is
irrelevant since such treatment is a last chance effort.
However, as identified by the Supreme Court in Rutherford,
to permit terminally ill patients to seek any type of
treatment regardless of the effectiveness of such treatment
would create a cottage industry existing solely to provide
potential panaceas to highly vulnerable patients. The
language of the Supreme Court in rejecting the Laetrile
argument is equally applicable here.
"If history is any guide, this new market would not be long
overlooked. Since the turn of the century, resourceful
entrepreneurs have advertised a wide variety of purportedly
simple and painless cures for cancer, including liniments
of turpentine, mustard, oil, eggs, and ammonia; peat moss;
arrangements of colored floodlamps; pastes made from
glycerin and limburger cheese; mineral tablets; and
`Fountain of Youth' mixtures of spices, oil, and suet. In
citing these examples, we do not, of course, intend to
deprecate the sincerity of Laetrile's current proponents,
or to imply any opinion on whether that drug may ultimately
prove safe and effective for cancer treatment. But this
historical experience does suggest why Congress could
reasonably have determined to protect the terminally ill,
no less than other patients, from the vast range of self-
styled panaceas that inventive minds can devise."
The absolute worst case scenario is that they lose some money and die a little sooner. The best case scenario is that they live!
To say that someone else can or should have the power to constrain another human in this way, to keep them from a chance at living, in the name of "protecting" them from doctors or companies...well, we are likely at a fundamental philosophical impasse. Which is why I return to my original point. Feel free to stay in the United States with the FDA. Those with a different cast of mind need a jurisdiction where we can take conscious risks, where we aren't "protected" from medical innovation.
> The absolute worst case scenario is that they lose some money and die a little sooner. The best case scenario is that they live!
No, the worse case scenario is that charlatans, given a license to operate with perceived legitimacy by an "opt-out" system, convince sick people to neglect real treatment for woo. In the vast majority of cases, your best case scenario never happens.
We have a system designed to separate the woo from the real. Despite what one might think from the narrative you paint, human trials are involved in this system and sick people receive experimental treatments every day in a controlled fashion. Perhaps this process could be streamlined, but it must stay in place.