actually the root of the problem here is government intervention already. The FDA approval process really mucks things up. Its in human trials now, FDA regs prevent the drug from being used on children until they are approved for it. Of course before that can happen the drug needs to be approved for adults.. Further, if the company were to make the drug available before it is approved that messes with the FDA machinery and could cause them to either slow down the approval or kill it dead in its tracks. Especially if since this is a drug that is not approved for adults yet, if they use it on a kid and there are any complications from for instance not knowing exactly how to dose it then that will cause the FDA to require further study on what happened there. So, it seems that the objectivist take on this can be summed up in the words of John Galt when he said ". Be the silent, incorruptible enemy they dread. When they force you, obey-but do not volunteer. Never volunteer a step in their direction, or a wish, or a plea, or a purpose. Do not help a holdup man to claim that he acts as your friend and benefactor. Do not help your jailers to pretend that their jail is your natural state of existence. Do not help them to fake reality. That fake is the only dam holding off their secret terror, the terror of knowing they're unfit to exist; remove it and let them drown; your sanction is their only life belt. "

Does the company have the right to say No to the grieving parents? From an Objectivist perspective, yes.

The problem arises because the FDA is holding a gun to the company's head. The FDA is about politics alone. They are concerned that some kind of side effect will kill the boy and, if they permit a "compassionate" use of the drug, they will get blamed for that death.

It strikes me that the only legal way out is get the local senator to propose a bill freeing up such drugs for compassionate use while directing the FDA not to slow up regular licensing of the drug in the future, no matter what the outcome in individual cases.

The parents should be seeking charity to fund the company doing the research. Maybe then they would have enough resources to continue providing the drug to the desperate in the here and now.

Is it moral?
If you give the medicine for 'compassionate use' to this boy, how can you deny it to others for the same reason?
This boy has had many, many severe health issues. Will making an exception and giving him this medicine save his life? Unknown.
My thoughts and heart go out to this family but sometimes life deals you a losing hand. This is just another reminder that our time here is finite and we should make the most of it.
Carpe Diem !

Of course, the assumption is that the FDA will actually approve the drug. I wouldn't count on it. And, to deny it to a child that, by most accounts, would be saved by it is the wrong choice in terms of my own ethics. But, I realize that this little boy, like the rest of us, are really just seen as livestock to those in power and those who bribe them to get their drugs approved. The FDA may have told the company that saving the boy and other like him wouldn't look good during the evaluation phase of the drug...if you get my drift.

I don't automatically believe this drug will save his life. It sounds like once again the treatments are doing as much harm as the illness. A similar argument was had when AIDS drugs were being tested. Cases like this highlight just how long it takes to bring a drug to market in this country. I am curious if a drug is available in another country that would help? A lot going on in this story.

Terrible dilemma... no good answer. Force cannot be used in any form. If it is a last ditch effort and death is certain, an appeal to the maker is all that one can do. One should also sign a release that removes responsibility from the maker in case anything goes wrong. The FDA should have a special program for trials of this nature. Their normal process is lacking compassion when it takes so long.