Right to Try

This is an idea I have advocated for years, though I don't know if I've done so here.
On Monday, the Montana State Senate unanimously passed a “right to try” bill, which would allow terminally ill patients to ignore federal restrictions on experimental treatments and drugs. Too often, patients who cannot be cured by conventional treatment are denied the ability to try new options thanks to onerous regulations by the FDA.
I think of this as somewhat like donating one's body to science, with the alteration that you might possibly not have to die. Even if you do, you were going to die anyway, and you're helping all of us someday solve the problem you are facing. It's the right thing to do.


MikeD said...

Concur. I would be happy to entertain objections to this, but I can come up with no logical ones.

Anonymous said...

Well one could argue some of the treatments could be worse than simply dying of the disease.

Cass said...

I think the arguments would be:

1. (above) cure worse than disease.

2. Undue influence (dying people are particularly vulnerable to scams).

How do you prosecute someone for fraud if there are no clinical studies showing a remedy works? They could sell tap water and no one would be able to lay a hand on them.

Or you could end up with another Thalidomide situation (no one knows the long range effects).

But I agree - it's a law I'd be very willing to entertain.

Cass said...

Reference: Kombucha, widely reputed to cure terminal cancer in the 90s when I worked at a health food store.

It's legal to sell it - you just can't sell it as a miracle drug that cures cancer.

Grim said...

As for the (1), there's also a benefit obtained that is lost in the case of forbidding the treatment. So even on utilitarian grounds, you have to balance "Death with somewhat less suffering" not against "Death, with somewhat more" but "Death, with somewhat more suffering but also while advancing medical science."

I'm not sure how convinced I am that utilitarian grounds are the right ones, of course; I don't generally think it's a good measure for ethics. Also, some of the cures we have approved are really horrible -- chemotherapy can be terrible!

But even if it is the right ground, it seems that the person who has to undergo the procedure would be the best judge.

I think (2) is a legitimate concern, but if we're talking about experimental drugs that haven't been FDA approved yet, we're not talking about "Dr. Bubba Jones' Magic Cure-All Serum -- With Genuine Snake Oil!". We're talking about things a pharmaceutical company has some reason to think might work, but hasn't yet adequately tested for the FDA approval process.

douglas said...

I'm pretty sure that no one pays to be a guinea pig- typically, they pay you.

MikeD said...

As addressed above, #1 is easily countered. If the pharmaceutical company is required to tell the prospective terminal patient all the possible side effects (based on whatever testing has been done up to that point... remember, we're not talking about "the effect of injecting Drano into a terminal cancer patient", we're talking about drugs that have not yet been approved by the FDA), and if the patient has the right to opt back out at any time, then the concern is not anyone else's business.

#2 is also easy to circumvent. Require that all non-approved medications be provided at the pharmaceutical company's expense. This gives them both positive PR (helping otherwise terminal patients... and imagine the press if the person recovers on their medication!), valuable data, and good arguments to show the FDA that the medication is safe and possibly effective. I can see the argument that the patient and their insurance company shouldn't foot the bill, but you take out that incentive, and the snake oil vanishes from the equation.

Texan99 said...

I'm with MikeD. As usual!

Unknown said...

Yes. This.

Let's also remove some of the restrictions on certain drugs at end stages - my Uncle risked much jail and prison time for procuring heroin for my grandmother when she was in the end stages of cancer. And while she died an addict - she died anyway, and it worked wonders for alleviating her pain and giving us a few more weeks of Grandma more like herself than the suffering creature she was before Mike did what was merciful - and right - as opposed to what was legal.