Medical Ethics

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It has recently been discovered that antibodies to Substance X are associated with neXt Syndrome and over the past 6 months you have discovered that you have been exhibiting 8 of the 10 symptoms of XS as described in some online medical article you read.   So you go to the doctor and describe your symptoms. 

Your primary doctor examines you and does not feel you have XS.  On your insistence they refer you to an XS specialist.  The specialist is skeptical of you having the condition, but on your insistence orders up the XSA test for antibodies.  There are actually two tests available, one of which is recognized by the "establishment", costs 4X as much as the other, but is partially covered by most insurance plans, including yours.  Still, the copay will be more than the cost of the other test.  This test is not considered reliable and as such is not covered by most insurance plans, including yours.  In the end your doctor recommends you go with Test B as it will save you money.  He neglects to divulge his relationship with B-labs who compensate him for his referrals.  Further, though he mentions the more accurate test, he downplays the differences and makes it appear that the cost of the first test is mostly inflated because it was developed by a large testing company who are keeping costs artificially high through a monopoly of sorts.

So you opt for Test B and are happy with your decision as it costs you less out of pocket and you feel better about supporting the up-and-coming lab testing outfit with your business.  As you are sitting in the waiting room to discuss the results you notice a bank of pamphlets about XS on the wall and a big poster with puppies and kittens on the wall advertising the latest XS Miracle Pill.   You are finally taken in to see the doctor and informed that the results came back inconclusive.  The doctor explains that sometimes Test B doesn't detect all of the antibodies to X and that you could have XS despite an inconclusive or even a negative test.  Would the other test have been better?  The doc hems and haws and sort of acknowledges that yes, it is superior, but brushes this quickly aside.  So what to do?  Well, the doc says he can order up Test A for you and you agree.  Only on review of your records and in light of the inconclusive Test B results, your insurance carrier denies coverage.   You explain to the doc that you can't afford that test and ask what he can do for you.

The doctor says he can't be sure you have XS, but in his experience with patients, he is almost sure that you have a difficult to detect form that still almost always responds to treatment.  He then goes through the options with you.  First there is Generic D.  This is a drug that has been used for decades for other illnesses and has a great safety record.  It's even available on WalMart's $4/month list!   The newfangled drug in the XSMP you saw all the ads for in the waiting room is actually modified GenD with a proprietary delivery formulation  that has allowed for a new patent.  Your doctor gives you a little XSMP kit and sample pack and a prescription for that.  His rationale is that it has been touted to treat tougher cases of XS, it's not too much more expensive for you as your insurance covers it, and it might be better to just go right to the "gold label" ... you agree.  He doesn't divulge a financial arrangement with the drug maker for every prescription he writes.  

So you take XSMP for 6 months with a couple of follow up visits.  It does not appear to be doing anything.  Your doctor explains that retesting would be futile because they didn't pick up the antibodies the first time so it is impossible to say if XSMP is working or not.  But you discontinue the drug and begin to look elsewhere for answers to your solution.   A year later your fragrance runs out and you decide not to replace it.  A little after that you notice you no longer have any of the symptoms of XS.  You are cured.  Meanwhile you are out about $1000 but have a couple of nifty pens and even a neat day planner.  

I'm blogging a stream of thought here ... there will be one or two more posts on this ... but for now, for any interested ... what problems do you see with my scenario?   Any idea where I'm going?  


Charles Grashow said…
celiac disease
Nigel Kinbrum said…
1) Metaphorical antibodies:-
XS = Metabolic Syndrome?
Generic D = Metformin?
XSMP = LC Paleo Diet?
your fragrance = CIAB?

2) Literal antibodies:-
XS = Autoimmune Disease caused by excessive gut permeability?
Generic D = ?
XSMP = Drugs to suppress symptoms etc?
your fragrance = CIAB?
Tsimblist said…
Related, but off topic.

Recently accompanied my wife to her visit with the Orthopedic Surgeon to learn about the MRI results on her knee. That is when we learned that she is diagnosed with Osteoarthritis of the Knee.

The Surgeon explained the results and answered questions and recommended arthroscopic surgery. He did manage expectations by making sure we understood there were no guarantees it would relieve the pain. They were ready to schedule the surgery and provided info on how to prepare for the day. I wanted to wait and do some research on the subject first.

Found this on my Google journeys:
Knee surgery denounced by surgeons
They “cannot recommend” it, because the data clearly shows that it’s ineffective.
carbsane said…
Not a disease ... a process. / cryptic
Karin said…
The problem is seeing a specialist. The patient should just ask the primary doc run the test. The doctor will run the "establishment" test, because it's older and more reliable and he/she isn't getting pressure and/or kick-backs from the Test B lab. In fact, if the Test B lab isn't sending around sales drones, it's quite possible the GP won't even know about it. I have no idea if the "establishment" version of the made up test will come back inconclusive. If it's a decent test the results should have definite ranges and be positive or negative, period. Since the problem in the long run turned out to be the patient's perfume, the test should come back negative eliminating the need for a prescription. The specialist certainly seems to have conflicts of interest. I have no idea if this is true of most specialists. However, since the GP doesn't specialize he/she won't be getting concentrated incentives from only one particular lab and/or drug maker.

I don't know where exactly you're going with this scenario, but that's my take on it.
carbsane said…
You're on the right track!!
lucyricardanon said…
"If it's a decent test the results should have definite ranges and be positive or negative, period."

There are a lot of medical tests that just don't work this way, and there are going to be borderline or "weakly positive" results. The interpretation of the results of any particular test may rely on the results of some other test, on the patient's history, family history, or current signs/symptoms. Sometimes you really do need a specialist to interpret the test results and/or decide which other tests to order.

The problem IMO is not seeing a specialist. The problem is that NO doctor should be getting kickbacks for referring for any test or for prescribing any medication. When ordering tests and prescribing medications are monetarily rewarded, that's what doctors focus on, and it reduces their tendency to use their common sense and rule out simple things first.
Karin said…
True, there can be borderline results. I still don't see the need for a specialist until the results come back. The GP should run the test first, and then see if a specialist is needed.

No, I don't think doctors or anyone in the medical field should be getting kick-backs or "incentives." However, that's the way it works right now and I don't see it changing anytime soon. I don't even see what could possibly change it at this point. The whole drug/lab/doctor relationship is too entrenched.
Karin said…
I've been thinking about this more, and I realized I've never been given a choice of test or lab by any doctor I've ever been to. I go to the doctor and they choose the test (usually a slew of tests) and the lab that will run them. The one time I was referred to a specialist the referring GP ran his test with his preferred lab first, and then the specialist ran yet another test with a different preferred lab. I've never been given a choice in the matter at all. I guess I assume my experience is the norm, but perhaps it's not. Do other people get asked their opinions about what tests and which labs? Maybe I'm missing out.
Sue Staltari said…
Diagnosing yourself! The GP and specialist both didn't think you had the condition but you insisted on tests thinking you knew better.
lucyricardanon said…
"The GP and specialist both didn't think you had the condition but you insisted on tests thinking you knew better."

I've been in that exact same situation, except that I was actually right. There's absolutely nothing wrong with asking for a test for a condition you think you might have, regardless of what the doctors think, because although they may have the formal education, you're the one who lives in your body. Sometimes you do know better.
Susanne said…
This sounds like the story of "subclinical hypothyroid" , myriad unspecified toxins, "parasites", miscellaneous supposed immune-suppressing food intolerances and vitamin deficiencies we got through with our hypochondriac aunt every season. The "specialist" is a naturopath and the syndrome is whatever is trendy in the woo-forums this week.
Sue Staltari said…
I am guilty of doing the same thing. Not saying its completely wrong as in your case.
carbsane said…
I agree with both here. The self diagnosis isn't really the main issue I'm getting at. Certainly if the doctor has no answers you should pursue them.
carbsane said…
Yeah it's no so much the option of tests, but what tests. Mainstream medicine doesn't recognize certain tests for levels of stuff (e.g. urine test vs. blood test vs. hair analysis). So that's where I'm going with this as part of the next post.

Usually doc writes the script for bloodwork and suggests a particular lab. There's not much consumer driven in the choice there (e.g. publicly available data on the lab's accuracy record, timeliness of reporting, etc.)
carbsane said…
Bingo on the kickbacks.
Karin said…
Honestly I'm surprised in your experience that the recommended lab is only a suggestion. For me it's always been, "You will go to this lab for the blood draw." If its possible for me to go to a different lab it certainly isn't apparent. Maybe it's because I live in a smallish area, but it seems that the doctors here all have some kind of contract with a particular lab (there's only two that I know about), and that's who does all the lab work for that office.

Also, speaking of cost for lab work, I've never known a doctor to know the cost. Cost doesn't even seem to be an issue they consider at all. The doctors I've dealt with order the tests they think I need and cost has never been a consideration. Whenever I've asked they always get this confused look on their faces like they don't know, and it's never really occurred to them to find out.

I would definitely like to see more consumer choice in the medical field. However, there seems to be a huge disconnect between service and the cost to provide the service, which I think makes it more difficult. How do you price shop when no one will tell you the prices? I can't think of any other industry that operates this way.
Nigel Kinbrum said…
I don't know enough about processes on your side of the pond to make any further comments.
Sanjeev Sharma said…
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