Subjecting Yourself to Experimental Meds

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?"

Comments

sentence 1: wtf

[Bootle]

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

Be careful

[thewiz]

My life was saved by an experiemntal drug. The doctors couldn't get my heart restarted after my third open-heart surgery via defibrillation or other methods. The anaesthesist was one of the doctors evaluating a new medication that showed promise for restarting hearts and used it on me. As you can tell, it worked.

I've also been on the bad side of experimental drugs and have suffered thru some major side-effects. It's not a great feeling when the medication you are taking to eliminate pre-ventricular contractions makes you feel like you're living underwater.

As for people volutarily subjecting themselves to experimental medications and treatment: TALK WITH YOUR DOCTOR FIRST! He knows your particular case better than any other doctor and can help you evaluate if you are a good candidate for the experimental treatment. It's a good thing that it's becoming easier to find out about available experimental treatments, but don't think it's going to be the "magic-bullet" cure until you find out more and talk with your doctor.

Day Job: Lab Rat

[RobertB-DC]

Moderately Off-Topic Anecdote time!

One of my favorite unknown alt.country singers, Slaid Cleaves, tells the story of his day job: lab rat for experimental medicines at a center in Austin, Texas.

I take drugs for a living. I'm a human guinea pig. A lab rat. A medical research volunteer. Pharmaco International pays me to stay in their facility for about $100 a day. Some studies only last a couple of days. Some are comprised of several weekend stays. Right now I'm in the middle of a long term study. 22 days. We are in the facility for the entire time, except for a few 20 minute walks around the building for fresh air. No visitors. No outside food. Hospital type meals are provided, along with newspapers, movies, pay phones and a clip board that tells us where to be and when for certain "procedures."

The rest of the story (including the lab's phone number, if you're interested) can be found at Slaid Cleaves' web site.

patient directed medicine

[Anonymous Coward]

[ 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

OT: A little editorial advice

[hey!]

Y'know, this is an interesting article, but it is classic case of "burying your lead". It starts of almost as if it is about the new NIH regs. I had to read it several times to make positively sure I understood what was going on.

Here is the original article:

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 the 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 moreso than the usual college students and elderly?"

Let me suggest this as a better rewrite:

ghostlibrary writes "People who are interested in obtaining information about experimental treatments for health conditions can turn to a new web site called patientINFORM, which is being evangelized by a collective of publishers and medical groups. This site is controversial because it in effect allows patients to circumvent their doctors in the search for unconventional and unapproved therapies. While the FDA has tacitly approved this kind of information service in the past, the NIH is about to issue new regs covering the conflicts of interest this kind of service raises. This site joins other sites that disseminate information about risky or untested procedures, such as the Typing Injury FAQ, which covers RSI (repetitive strain injuries) or Health-Hack, which covers IT-related self-help medicine. Laser-eye stuff is now mainstream and doesn't need a check beyond google, and past Slashdot articles have even discussed the advisability of using wikis in hospitals.

Are there other sites out there for those willing to dictate their own medical course? Does this mean Internet users are joining the usual college students and elderly as experimental subjects for untested therapies?"

I think this is a bit clearer. A general word of advice -- try to put what an article is about in the first clause of the first sentence if possible