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Life and Death Lunacy in the Golden State

Less than two weeks ago, California Governor Jerry Brown signed a bill making it legal for terminally ill Golden State residents to kill themselves with medical help, provided that two doctors certify that they have less than six months to live. This week, he vetoed a measure that would have granted those same kind of patients access to experimental drugs that could save their lives. The San Jose Mercury News reports:

Despite his landmark decision last week to grant terminally ill patients the right to end their lives with a doctor’s help, Gov. Jerry Brown took a different course on Sunday and rejected Assembly Bill 159, the so-called “Right To Try” bill. The latter measure sought to allow terminally ill patients who have exhausted all other options to access experimental drugs, products or devices that have not yet been approved by the U.S. Food and Drug Administration.

“Patients with life threatening conditions should be able to try experimental drugs, and the United States Food and Drug Administration’s compassionate use program allows this to happen,” Brown wrote in a signing message to lawmakers. “Before authorizing an alternative state pathway, we should give this federal expedited process a chance to work.”

But proponents of the measure — adopted so far in 24 states, most recently in Oregon in August — seemed stunned by the announcement.

The nation’s trend toward individualism—the gradual weakening of external constraints on freedom of choice—presents both opportunities and causes for concern. The proliferation of assisted suicide statutes, for example, seems likely to reshape the incentives for many sick and vulnerable people, effectively encouraging them to take their own lives. But “right to try” bills, which have seen much wider adoption than assisted suicide bills, work the opposite way: They would give people with nothing to lose the ability to bypass cumbersome FDA bureaucracy in an effort to save their lives. Gov. Jerry Brown apparently believes dying people people should be allowed to access tried-and-tested lethal drugs but not potentially therapeutic ones.

Perhaps we’re missing something, but this position seems utterly incoherent.

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  • wigwag

    Governor Brown’s decision is stupid; he should be excoriated for it.

    With that said, the reality is that it is extremely rare for an experimental medicine to dramatically improve the condition of a patient with a terminal illness. Even drugs that receive FDA approval for the treatment of terminal diseases typically only increase lifespan by a matter of days or weeks and very rarely, months; improvement beyond that almost never happens. The vast majority of experimental medicines don’t work at all, and when they do work, their efficacy is modest at best. Often these medicines have very problematic side effects that make the ill patient sicker, not better.

    Unfortunately, the entire drug approval process in this country is seriously flawed and there’s more than enough blame to go around. Government, through the incompetence of the FDA is a main culprit, so is big pharma, the academic sector and disease oriented, non-profit groups who all share part of the blame.

    As bad as Governor Brown’s decision is, it is unlikely to bring additional suffering to those afflicted by these terrible diseases.

    • Andrew Allison

      No argument that Brown represents a spectacular failure of the intellectual rigor which Jesuit teaching supposedly inculcates, or that drug approval in the US is a nightmare for all concerned. That said, the efficacy of an experimental drug appears to me to be irrelevant. If somebody has a disease which is going to kill them in a few months, shouldn’t they have a choice? Unhappily, absent State preemption, by the time they and their physician jump through all the FDA hoops, it won’t matter whether the drug is effective or not. That makes assisted suicide the logical choice. This, it appears to me, is the basis of TAI’s charge of incoherence. On a completely different subject, Big Pharma charges four-or-more times in the US what it does elsewhere because it’s permitted to. It’s high time that drugs were required to be sold at the same price everywhere.

    • Jim__L

      It is particularly cruel to deny hope to the terminally afflicted, however tenuous that hope may be.

      It is both cruel and irrational to deny their remaining months of life the meaning that it would gain, by helping to determine whether new treatments could help people in similar condition.

      • wigwag

        Jim, the problem is that providing experimental medicines to terminally ill people does little to nothing to determine whether the drug works. The only way to determine whether a drug has efficacy is to test it in the context of a randomized placebo controlled trial. In its simplest iteration, this means half the patients get the drug, half don’t and drug or placebo is assigned randomly. You then test whatever the outcome measure you select in both groups to see if the group that got the medicine does better than the group that got the placebo. Outcome measures can be as diverse as life extension, reduction in tumor mass, or pain reduction. It can even be the improvement in a biomarker in the absence of clinical improvement; an example of this is that statin drugs reduce total cholesterol levels and this is accepted as good enough even if no impact on heart attack frequency or death is proven.

        The thing to remember is that it is exceedingly, exceedingly rare for an experimental medicine to substantially lengthen lifespan in terminally ill patients or to significantly improve their often painful symptoms.

        I agree that giving patients hope by providing them access to these medicines is worthwhile and, as I said, I think the Governor’s decision was ridiculous. But remember, when patients get these medicines on a compassionate use basis, there’s often nobody even enquiring to determine in a rigorous way whether they experienced any improvement. As bad as it is, the Governor’s decision is highly unlikely to deny anyone an improvement in their condition that they might otherwise have had.

        Patients with terminal diseases are routinely enrolled in trials of experimental medicines conducted by pharma or academic investigators; the problem with these trials as far as patients go is that they are randomly assigned to the drug or placebo so they only have a 50 percent chance of getting the medicine at all. Nobody knows, including the patient and his doctor, whether they received medicine of placebo until after the trial has concluded.

  • Andrew Allison

    Something Jerry Brown did incoherent? Surely not? On the other hand he is two-for-two just in today’s posts. Not to worry, the FDA is renowned for its expeditious handling of drug approvals [sarc].

  • Fat_Man

    “Perhaps we’re missing something, but this position seems utterly incoherent.”

    Some truths can only be accessed through poetry or religion.

    Leonard Ha’Kohen Ha’Navie explained it:

    “Destroy another fetus now,
    We don’t like children anyhow.
    I’ve seen the future, baby:
    It is murder.”

    • Andrew Allison

      There may be a tenuous link between “the gradual weakening of external constraints on freedom of choice” and abortion, but it has nothing to do with the subject of the post. Whether or not abortion is murder is a matter of opinion, the lunacy of approving assisted suicide and denying attempts to prolong life is not.

      • Fat_Man

        It is poetry, man. It digs under the surface of events. It is prophecy. It holds our inmost being up in front of us and demands we inspect it.

        “Things are going to slide, slide in all directions.

        Won’t be nothing, nothing you can measure anymore
        The blizzard, the blizzard of the world has crossed the threshold

        and it has overturned the order of the soul”

        “Your servant here, he has been told to say it clear, to say it cold:

        It’s over, it ain’t going any further.

        And now the wheels of heaven stop, you feel the devil’s riding crop

        Get ready for the future: it is murder”

      • Jim__L

        If one is mere opinion, both are mere opinion.

  • Cliff Woodhall

    Perhaps we’re missing something, but this position seems utterly incoherent
    Perhaps, as a retirement plan actuary, I have a rather ghoulish view of this, but one thing is immediately apparent to me. If you are the sponsor of an under funded defined benefit plan (and I believe the state of California meets this description), the decision to die early creates an actuarial gain in favor of your plan, and the possibility of extending life by a new experimental means creates a loss against it. Far more subtle than establishing an outright “death panel” – and no way to prove this is a motivation for governor Brown – but it does explain what might be otherwise unexplainable.

  • gabrielsyme

    Jerry Brown has had quite the week: he also signed a bill that may be the most blatant assault on conscience rights and religious freedom in the United States today – a bill forcing pro-life pregnancy counselling centres to advertise abortion services. In so many ways, California has a weird fetish for death.

  • f1b0nacc1

    Aside from the obvious foolishness that has been a staple of any story concerning Governor Moonbeam, there is another factor in all of this that hasn’t been mentioned. If experimental drugs are going to be used, they tend to be expensive, and someone ends up having to pay for them. While this is often done gratis by the vendor, this is not always the case, and it is hard to see how the state of CA is desperately afraid that they may end up footing the bill for patients who want to make one last attempt to stave off death. CA prisons, are a good example of this liability already, but it isn’t hard to see how other state-dependent peasants (citizens and non-citizens) will be a potential problem as well.
    Another potential problem is that drugs at the beginning of their ‘learning cycle’ (experimental or not) are expensive, and put even more pressure on CA’s finances. If the state can retard the advance of medicine or at least manage to stay off the cutting edge, they reduce their costs even more. Facilitating suicide and discouraging desperate or semi-desperate measures to fight death is an immensely practical (if reprehensible) approach to coping with costs.
    Of course our friends on the Left (are you here FG?) will tell us that corporations are evil and only concerned with profits…here we have a perfect example of a state concerned with its budget numbers. To describe this sort of behavior, I believe that the phrase ‘the banality of evil’, which was used to describe the ultimate in bureaucratic murderers (Eichman) is unusually appropriate here…

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