Skepticism
Dear Igelb;
Skepticism is good. We should all be highly skeptical of arguments rationalizing withholding or banning anything "for our safety", and of allowing anyone to have the power to do so. This is especially true if an inappropriate standard of safety is being used.
Therefore, I'd like to address the skepticism that you and many others have regarding RCH4.
In the message above, you do allow RCH4 users a right to use it with some strong skepticism, but your arguments seem generally supportive for the banning of any drug which has ever been shown to be harmful.
I don't think that's right. You are framing the evaluation using the standards of healthy people who'd be put at risk by a drug. Of course one wouldn't seek chemotherapy for a headache..but for a cancer? Your position disregards the fact that ALS is by itself a death sentence, which places PALS in a different position than healthy people in the general population.
If many people honestly attest that some drug helps, why shouldn't a PALS take the risk of using it, and reasonably so? What might it possibly do, kill us? We will be dying anyway. Dying sooner & less horribly from a drug reaction vs. a real chance to live longer is a choice I'd happily make. If some hypothetical drug gave even an anecdotally-established 50% chance to halt ALS progression but it came with a 1% chance of death, doesn't that decisively beat a 100% chance of a very nasty, protracted death?
No one (and no agency), no matter how earnest their skepticism, should have the right to withhold anything from a PALS or other person with a fatal illness. That includes telling them about things like RCH4. If you want to help, then advise, support, and even cajole as you see fit. But do not withhold, especially by your silence or your contempt. Medicine has a duty to inform, which is being neglected.
If we then harm ourselves in full knowledge, that's on us.
If you have harmed us by withholding or by omission, that's on you.
If RCH4 is delayed or killed off by (presumably) well-intended skeptics, a great disservice will have been done to all PALS who might have benefited from it. RCH4 already has more than enough evidence to warrant a real evaluation but the skeptics are setting this back severely and may kill it entirely. If RCH4 is eventually shown to be effective, should the families of the PALS who died in the interim then sue the skeptics for wrongful death? Should the skeptics be indicted for negligent homicide? I go to extremes but that's what it amounts to.
My point here is that the collective skepticism may well be more deadly to PALS than RCH4 is.
If the stuff has any benefit, we all need to know ASAP. Instead of denigrating, even by inference, we should all be fighting to see that happen quickly.
Anecdotally, RCH4 users have been very supportive of that drug's benefit with few reports of side effects of any kind. Some users have stopped taking it, passing away after a long, slow decline. To my mind that's much better than a rapid decline with the same outcome. The charity who distributes RCH4 says up front that 15% of people don't respond to it at all; their ALS is caused by some other mechanism. But this is not surprising. All medications have a spectrum of effectiveness and harm. Few are universally safe and dosage always plays a role.
But I submit that medicine ought not to effectively disdain such a drug by using a "safety" standard more suited to people who aren't facing certain death. if something like RCH4 helps a small fraction of users, and even if it harms some, medicine's obligation is to inform potential users that such a drug exists and what the benefits/risks are.
Presently, RCH4 users are providing this information, generally on forums, and facing significant opposition in the telling. While it is unfortunate that the conversations do sometimes get a bit warm, the criticism, skepticism, thread closure and "scam" allegations they generally face are at best unwarranted and at worst may do great harm. If there's benefit to RCH4, PALS across the world need to know RIGHT NOW, and if we take it all risk is on us. That's what we all should be pushing for. Delay, however well-intended, may be responsible for premature death on a wide scale.
Respectfully,
Jim Savino