<p>Fang, yes. </p>
<p>Proof that there’s usually not “one true way” when it comes to healthcare.</p>
<p>^ Yes. And for every evil insurance company, and damned doctor there might be …dare I say it? No…I don’t dare. </p>
<p>Many years ago it was not uncommon for patients to demand the name brand, or latest medication for a fairly routine complaint; now it is not uncommon for patients to demand the cheapest! </p>
<p>Post number 1680 makes me think of a few things. If at some point we all share one pot of money to pay for health care, what will be the role of the doctor in telling patients about"all" treatment options? I anticipate only those viewed as “best” and “evidenced based” practices will be covered. Should the doc describe those that are not? Will there be even MORE pressure to do those time consuming “treatment authorizations” (TARS) to do something else?</p>
<p>shrinkrap - is one of your children a physician?</p>
<p>I’ll say what I think Shrinkrap was going to say: for every damned doctor, there’s a hundred idiot patients. True.</p>
<p>Shrinkrap, do you think doctors should be describing options that are not viewed as “best” or “standard of care” or “evidenced based”? Seems like there would be an infinite number of those treatments, and why would I want to hear about them, if there are better options available to me?</p>
<p>Cardinal – I’ll answer – because sometimes in an individual case, the newer and less well tested treatment might be potentially better for that person’s needs. Statistics don’t translate all that well to individual situations when the individual circumstances makes that person different from the norm. As medical science advances, then there is a greater ability to tease out some of the differences, bringing in such things such as genetic testing.</p>
<p>A large number of findings reported through statistical medical research later turn out to be wrong. See: [PLOS</a> Medicine: Why Most Published Research Findings Are False](<a href=“http://www.plosmedicine.org/article/info:doi/10.1371/journal.pmed.0020124]PLOS”>Why Most Published Research Findings Are False)</p>
<p>There are a lot of reasons for this, including practical limitations on research and selection bias that determines what gets studied and what doesn’t. It’s hard to get funded or to set up a study of unconventional approaches, and there can also be a gap of many years before a new and effective approach becomes accepted. </p>
<p>That doesn’t mean that you ignore research – but as a patient I also want to be informed of alternatives. </p>
<p>I brought up an example in my post #1661, referring to the virtual colonoscopy (using MRI) See: [Virtual</a> Colonoscopy - National Digestive Diseases Information Clearinghouse](<a href=“http://digestive.niddk.nih.gov/ddiseases/pubs/virtualcolonoscopy/]Virtual”>http://digestive.niddk.nih.gov/ddiseases/pubs/virtualcolonoscopy/)<br>
The method hasn’t been around long enough to get comparative outcomes – but it clearly less intrusive than a regular colonoscopy. (And probably less expensive). On the other hand, if a polyp is found during the virtual procedure, it can’t be removed – so it does have a shortcoming. Insurance policies vary as to whether they cover it. But I think it is a legitimate patient option to consider. </p>
<p>When I had my children, ultrasound was new and expensive and so insurance would not pay for it unless there was a specific reason. (I didn’t have ultrasound with the two children who ended up being born, but I did have ultrasound with the pregnancy in-between that ended in early miscarriage, because in that case there seemed to be something wrong and the doctor wanted a look). Now, of course, it is routine for all pregnant women to get ultrasounds. However, even though insurance would not have paid for it, I was told about the option – I could have opted to pay for it on my own if I had wanted it. Obviously that was 25+ years ago – but there will always be something new on the horizon. </p>
<p>I’m not saying that insurance should pay for all the new stuff – I understand that insurance companies rely on statistical information and determinations for good reason. But I do think that doctors should be ready to inform patients of options that go beyond what insurance will cover. Those options are not always cost-prohibitive.</p>
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<p>Here’s the thing: the new less well tested treatment might be better. It might be. But it probably isn’t, and I don’t trust an individual doctor’s clinical judgment about new treatments any further than I could throw it. How does the doctor come to believe the new treatment is better for some people? Either he tried it on two or three patients and it seemed to work, or the drug rep told him it was better. Neither of those reasons is at all convincing to me. Drug reps lie, and I don’t believe in extrapolating from a sample of two.</p>
<p>You’re trying to tell me that a doctor “knows” that an untested treatment is better. How?</p>
<p>When my husband was given Rituxan for his non-Hodgkin’s lymphoma 13 years ago, it was a new treatment, just out of clinical testing. He opted for a combination of the old standard treatment and the new mono-clonal antibody. He’s been in remission for thirteen years, which is long enough for him to be “medically interesting,” according to his doctor. His treatment was considered untested and extreme at the time.</p>
<p>(Oh, and it cost $7000 a treatment then, and he needed six treatments. We’ve paid way more than that to the insurance company in the years since; they’ve “won,” despite treating BOTH of us for cancer.)</p>
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I’m saying that a doctor ought to KNOW that a new treatment EXISTS, and give a patient the information about the state of knowledge at the time. </p>
<p>My grandfather died of stomach cancer in 1966. I inherited a gene, presumably from him, that puts me at higher risk of stomach cancer… but I probably will not get stomach cancer. Why? Because most cases are probably caused by a bacteria called Helicobacter pylori, which also causes ulcers.</p>
<p>Back when my grandfather died, al doctors “knew” that ulcers were caused by stress. They could give patients antacids to control the pain and discomfort, but they couldn’t cure them. . </p>
<p>One doctor in Australia named Barry Marshall thought that ulcers were caused by bacteria and could be treated with common antibiotics. No one paid any attention to him and he couldn’t get approval to do research – so he ended up infected and treating himself in order to prove his theory. </p>
<p>Marshall first proposed his theory in 1981, published an account of his work in 1985 – but his work and findings weren’t commonly accepted until the mid 1990’s after randomized controlled studies were finally published. </p>
<p>If I had gone to a doctor with an ulcer in, say, 1988 – I would have wanted to know about Dr. Marshall’s theory. I wouldn’t have wanted to suffer for another 6 or 8 years until medical science caught up – I would have figured that the theory was worth a try. Two weeks of antibiotics and I either get better, or not – so of course I would have wanted to try. </p>
<p>I would not have wanted a doctor to misrepresent the state of the research – but I would have wanted to know and to have a choice.</p>
<p>The big difference these days is the internet. I want my doctors to be reasonably informed about what is happening on the horizons. But they don’t have to tell me everything – I can look up a lot of stuff myself.</p>
<p>I had ulcers in mid to late nineties, couple of bad recurrences . Antibiotics were never offered. I gave up coffee for about 12 years.</p>
<p>dmd77, what are we to conclude from your husband’s results, other than that we’re glad that he has survived? We know nothing. Did Rituxan work for him? Did the old treatment work for him? Was it the combination that was successful? Would he have had a remission anyway?</p>
<p>I can’t figure out what I am supposed to conclude from his result. Rituxan was approved by the FDA in 1997 to treat non-Hodgkins lymphoma, so 13 years ago it wasn’t THAT new.</p>
<p>Trouble is, for every helicobacter-like theory floating around the Internet, there are a thousand fruitcake pseudo-science theories. How is your 1988 doctor supposed to know the difference between the unproven treatment that works, and the thousand unproven treatments that don’t work? And do you really want to hear about a thousand and one crazy untested theories, one of which might be good?</p>
<p>If my son’s doctors had to tell him about all the autism cures some nut on the Internet is promoting, he’d be in the doctor’s office all day.</p>
<p>Is one of my kids a physician?</p>
<p>LOLZ. No! they are 20 and 23. Why do you ask?</p>
<p>Do I think doctors should be describing treatments that are not “best” or standard of care"? </p>
<p>There is so little that is proven effective and available when it comes to the treatment of some pretty devastating kid things.( I am not talking low SAT’s or getting B’s). At what point should we just say nothing works? And in the background, some folks are getting everything, and some none. Will a common pool of resources address that?</p>
<p>I posted some recent research about how the diagnosis of ADHD varies by zip code, related to how many doctors are available, but I think it got deleted.</p>
<p>" How is your 1988 doctor supposed to know the difference between the unproven treatment that works, and the thousand unproven treatments that don’t work? And do you really want to hear about a thousand and one crazy untested theories, one of which might be good?"</p>
<p>Sometimes if you get the right specialist, they might just really know what they’re doing. I thank God that after seven years of different doctors saying that if we could just get the right allergy medicine, nasal spray, eye drops, etc, that those tics would stop…that we finally got a neurologist that confirmed the obvious Tourette’s syndrome. He was a research guy who decided to treat with a low dosage, low side effect epileptic medication instead of the usual anti-depressants and their high level of side effects. Insurance refused to pay for “experimental treatment” for awhile, but we were lucky he was willing to try something unusual instead of the norm.</p>
<p>“Why do you ask?”</p>
<p>Post 1665 kind of made me wonder since people in the same profession notice such issues unless the kid was involved in parents’ practices.</p>
<p>Busdriver, so glad that you finally found a doctor that gave you the right diagnosis.</p>
<p>" Should the doc describe those that are not? Will there be even MORE pressure to do those time consuming “treatment authorizations” (TARS) to do something else?"</p>
<p>Current practice is often based on which insurance coverage you carry. At least that is our experience.</p>
<p>“Post 1665 kind of made me wonder since people in the same profession notice such issues unless the kid was involved in parents’ practices.”</p>
<p>I’m sorry; I don’t understand. My D saw one mental health professional who didn’t seem to collect from her as she left, didn’t know what charges were “allowable”, didn’t seem to understand about deductibles. My office manager is rebid about that stuff. Another provider she saw didn’t seem to know how to file a claim, even though he was on their panel and obligated to do so. Meanwhile I am doing what I can to have our cash payments counted toward our high deductible. I notice claims are declined because of non timely filing. I took care of the filing,as well as I could, but D is over 18, so it was hard to get answers.</p>
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<p>True, but we can triage with as yet unproven but promising treatments. Patients with terminal illnesses have petitioned with some success to gain access to meds that seem effective but haven’t gone through all the protocols. If you’re going to die anyway, what’s the problem?</p>
<p>The FDA has a fast track approval program for drugs showing promise for conditions having no effective treatment. </p>
<p>Milton Friedman wondered whether more lives would be saved if drugs were rushed on the market with minimal regulation versus allowing people to die while waiting for all the testing.</p>
<p>There’s a difference between “It looks promising in trials” and “Somebody has a theory.” Helicobacter was the latter-- but the point is, helicobacter was mixed in with zillions of crazy loopy theories that wouldn’t work.</p>
<p>We can look at clinical trials and see what drugs seem to be promising-- although virtually all promising drugs don’t pan out-- but we should not expect doctors to keep abreast of every theory that somebody has. And even if a doctor knows about some novel theory, they still don’t have a way to evaluate its effectiveness except clinical trials. And that’s why we have clinical trials.</p>
<p>Are some here trying to say doctors don’t know what they are doing?<br>
It’s true there is no “perfect,” with respect to treatment, but that’s the nature of the beast. A quick look-back will show how much has evolved, in our own lifetimes. Is that the fault of the doctors? Or the nature of trying to predict what will work on whom? Plus the continued new developments and practices that start to show results? </p>
<p>When there is a decision to be made, I want my doctor to give me informed advice and opinions. To the best of his/her ability. That doesn’t mean we have yet discovered every cause, influence, course of an ailment or, in many cases, the one true treatment.</p>
<p>A very quick google showed many reputable institutions accepting the possible link between Heliobacter and stomach cancer. Maybe I’ll go look again.</p>
<p>You have to look not at the headlines, but the actual research reports. Many studies are on a limited number of people, a rough look-see. Many turn out to be limited to certain regions or types of individuals (what was it that sped around the globe, but turned out to be a study of a limited number of elderly Chinese men?) You try to put it together, then turn back to the guy or gal who is guiding you- the doctor. Or at least, I do.</p>