Monday, February 22, 2016

Right to Try

A neighbor forwarded me some information from a friend of his who is dying from ALS, and would like to try some experimental treatments.  FDA of course is blocking it.  So I dug around a bit:
The book begins with a description of Ted Harada, a young father diagnosed with Lou Gehrig’s Disease (ALS). ALS is a death sentence; it has a 100% death rate, and the only question is whether death will come in five years or two. But Harada had an experimental stem cell surgery at Emory University that reversed his symptoms completely – until the FDA stepped in to stop him from having further surgeries. Harada’s surgery is also unavailable to the approximately 24,000 people who have died since Emory’s clinical trial began.
In some circles, there is a belief that Big Pharma is trying to kill us, or at least profit from our misery, hoping we stay sick.  That's paranoid.  In this case, the FDA is actively blocking experimental procedures for people who are terminal.  What's the worst that can happen?  They die?  Idaho's legislature is considering following 24 other states:
BOISE, Idaho (AP) - An Idaho House panel has introduced a bill that would allow terminally-ill patients to access drugs that are still being researched.

Democratic Rep. Melissa Wintrow of Boise says the legislation permits patients to use pharmaceuticals that have already passed safety tests by the Federal Drug Administration....

Wintrow argues that the measure would dramatically alleviate the wait time and paperwork for patients suffering from diseases like Lou Gehrig’s Disease. Patients would assume all liability and responsibility for using the drug, but they would be required to be under the care and supervision of a doctor.
Count on the FDA to stand in the way. Not surprisingly progressives are siding with FDA and against hope for the terminaaly ill.  California's Gov. Brown vetoed such a bill, and the Boston Globe editorializes in favor of protecting the terminally ill from lifesaving treatments.
The laws threaten to unravel decades of patient protections, since the FDA is precluded from providing its traditional oversight. And in some states, the laws could even make it more difficult to obtain experimental drugs because of requirements not found in the existing federal program. In some states, for instance, more than one physician diagnosis is needed for drug access. Certain state laws also demand that written consent forms carry added stipulations that may need legal reviews. Insurers, meanwhile, are not required to pay for treatment, yet most of the states failed to create funding to help patients cover medical expenses. Plus, there are unanswered legal questions about whether state laws trump federal regulations.

HB 481 is supposed to have a hearing Feb. 23 before House Health & Welfare committee.



    The problem with "right to try" laws as most are being written/considered is that they piss all over science and open the door to outright quackery being sold as a last ditch attempt save someone's life, and will eventually (note not 'could', but 'will') lead to scam (where the cam part == complementary and alternative medicine) artists bilking the families of dying patients out of whatever is left of their savings after the hospitals and legitimate doctors[1] have it.

    A huge part of the problem is that "legitimate" (note quotes) medical organizations have little desire for expanded access or "right to try", but with a trillion dollar market out there a lot of less scrupulous folks have a HUGE incentive to open things up, and very, very few politicians or their sttNo

    Thus you get stupid s*t like this

    That said, I come from the side of the aisle that says "You can put anything you want in your body, and any government that uses men with guns to prevent that is of questionable legitimacy". Of course that side of the aisle says "Oh, but if you do, and it messes you up, well, Big Boy Rules".

    The problem with "right to try" is that it gives legitimacy to crap like Colon Clenses, Oxygen therapy for curing cancer and the link.

    And once you give those murderers access to the billions of dollars in health care you'll have more and more people refusing things like radiation and chemo therapy that are BRUTAL, but proven to work at least most of the time, and going with enriched smoothies and sent therapy which at least let them die with most of their hair.

    [1] I have no problem with the quality of care and effort most doctors and nurses make. I think they do their best, and they should get compensated handsomely for their work, but often hospitals and insurance companies have...let's just say that they're not as spendthrift as they could be in some areas.

  2. And Laetrile.
    Governor Moonbeam vetoed this bill when it came to him, but signed the one that permitted physician assisted suicide. I guess they are saying this is as far as medicine develops during this cycle of human development out of the dark ages.