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Subjecting Yourself to Experimental Meds

Posted by Hemos on from the test-monkeys-ho! dept.

ghostlibrary writes "Even while NIH is getting new ethics regs, patientINFORM is being evangelized as a way for ordinary citizens to look up experimental treatment online, in essence circumventing their doctor, and the FDA long ago tacitly approved this. /. debated Wikis in hospital. RSI fans track risky or untested procedures from the Typing Injury FAQ and Health-Hack covers IT-related self-help medicine. Laser-eye stuff is now mainstream and doesn't need a check beyond google. Any other sites out there for those willing to dictate their own medical course? Does this mean Internet users will become test subjects more than the usual college students and elderly?"

2 of 350 comments (clear)

  1. sentence 1: wtf by Bootle · · Score: 5, Insightful

    Does that even remotely make any sense? Sure as hell doesn't to me...

  2. patient directed medicine by Anonymous Coward · · Score: 5, Insightful

    [ Disclaimer: I come from a family of MDs, so am probably unusually sympathetic to doctors ]

    There is a general problem with medicine in the US, and this story is part of it. The medical system considers us "patients" who are to be taken care of. But the insurance system considers us "customers", who have to manage our own health care, and figure out how it will be paid for.

    Here's my latest example: I have good reason to suspect I have high LP-a, a condition that can be detected with a simple, inexpensive blood test. The results are easy to interpret, but the test is not standard procedure, especially for someone my age (young).

    The local hospital does the test for $30. My insurance won't cover this test, so it is going to be out of pocket for me. BUT, the hospital won't do the test without a doctor's prescription (read: permission). They say this is so that it gets "billed to your insurance" correctly (even when I say that I am paying out of pocket).

    I can go find some doctor (I don't have a regular doctor), pay a few hundred dollars (insurance won't cover this visit), and explain in gory detail why I want this specific test, hope that they don't think I am kook and give me the prescription. Then I pay the $30.

    The kicker is that the hospital still won't give me the results. Instead, they will only send them to the doctor, requiring a second visit, and more money I don't have.

    So how does this make sense:
    - A test is being done on me
    - But doctor must consent (no mention anywhere of my own consent, by the way)
    - The results, in medical file, are kept hidden from me
    - And I am expected to pay for the whole thing
    - Yet can not influence any of the process