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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?"
Does that even remotely make any sense? Sure as hell doesn't to me...
If you understand the risks, side-effects, and possible benefits, anyone who is mentally fit should be able to insert whatever materials they wish into their own body presuming no perceived liabilities to others (which would preclude crack, PCP, etc).
How is gathering infromation on experimental treatments "circumventing their doctor"? It seems to me that it is better to be informed about potential or experimental treatments for an ailment you are suffering from - if you are interested, bring it up with your doctor. And no, that doesn't mean you should TELL your doctor you want this or that treatment; the idea is to inform yourself, not attempt to replace the years of training and practice a doctor has. Seems like a non-issue to me.
...and the FDA long ago the tacitly approved this. /. debated...
/. abbreviation?
Can we please refrain from starting sentences with the
Doctors are like help desk technicians - you come to them with a problem, they have tests they can perform, and in the end they try to help you fix whatever's ailing you. But also like a tech, doctors are not always perfect - they have to make educated guesses about the problem and can definitely make mistakes. (The analogy continues, but it's important to realize the difference in necessary education before a person becomes a doctor. The risks of a PC crash are nothing compared to an allergic reaction that results in death.)
Now just like calling a computer tech, your visit to the doctor may not be that fruitful. It is possible that you will discover something your physician doesn't - after all, it's your body. In many cases, the doctor may not be willing to spend hours of research time finding a possible treatment for you. It's not surprising that you're willing to spend those hours on Google or other resources.
What I'd suggest is that you do your research and present your findings to your doctor. Work with him or her to approach these findings from an objective (try) standpoint and leave your emotions at the door. If your doctor will not work with you and you believe that one of these treatments may be successful, find another doctor who will be more receptive.
A few months ago, I went to the doctor with what I feared to be bronchitis or pneumonia. He told me I had the flu and prescribed a couple of things. I was skeptical of his anti-viral Rx, and when I went to get them filled the pharmacist told me that these drugs were only supposed to be prescribed on the first or second day of symptoms (I was in my fourth). I felt like the doctor (not my regular, but someone filling in) just gave me something to get me to leave. I did some research, and sure enough, there was no reason he should have prescribed those pills other than to mollify me.
Like telling a user "run a defrag."
- Clinic research is not statistically adequate: testing a medication on 10,000 people will not catch adverse side effects that kill 1-in-20,000 (e.g., kill 1,500 per year when 30 million peapl take the drug). Aspirin given to millions of children for more than 100 years before discovering Reyes syndrome.
- Genetic variations: People aren't genetically uniform. A drug that tests safe and effective on Chinese patients may kill Caucasians (and the Chinese and Caucasians are hardly genetically uniform). For childhood leukimia, there are currently 3 different drugs and they use genetic testing to determine which one to use (the wrong one is lethal).
- Environmental factors: The other substances that you ingest affect drug behavior. Two different drugs may be metabolized via that same pathway and thus if you take both, it slows the the processing of the drug (may increase or decrease the drug's effects). Foods also affect the results. For example., grapefruit deactivates certain digestive enzymes that otherwise limit absorption of some drugs (e.g., you get a higher dose of the medicine if you take it with grapefruit juice).
The point is that there's rarely enough data and too many genetic and environmental variations to judge all the effects. No medicine is ever proven safe. At best, you can create statistical confidence estimates on the likelihood of adverse reactions, but the genetic and environmental factors make these hard to do.Two wrongs don't make a right, but three lefts do.
[ 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
I have a rare form of cancer for which I am about 30 years younger than the average person with this cancer. I don't expect my doctor to know much about carcinoid because there are so few of us (he has only treated about half a dozen people with carcinoid).
Therefore, I feel it is my job to research as much as possible, find experts in carcinoid with which to consult and the latest paper to forward on to my current doc. Medicine should be a cooperative venture between doctor and patient, never just one or the other.
--Ron
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And then one day she got a phone call: "Stop taking that medicine. Don't take the next pill. Go see your doctor immediately." One of the other patients had died from a side effect of the medication.
But for my mother, it was a real miracle drug. It has put her arthritis in remission for 10-15 years - and that is unheard of in the world of arthritis treatment.
Fen-phen comes to mind as another example. Playing games with stuff that hasn't been well studied may have great benefits, or serious consequences, or both. If the FDA hasn't done due diligence (or if you don't trust the FDA), then you'd better do your homework like your life depends on it. Don't just look for the reports of how wonderful the results can be - look for how bad the downside can be.