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Sure. My wife had lost several pregnancies, including late losses. All sudden. There was no explanation ... tests all normal. Went to several MFMs at UCSF, Stan
by tathougies 8y ago
Sure. My wife had lost several pregnancies, including late losses. All sudden. There was no explanation ... tests all normal. Went to several MFMs at UCSF, Stanford, Mayo Clinic, etc, who told us that there was no evidence backed treatment to offer. Her obstetrician (been in practice almost 50 years) told my wife that she had a blood clotting disorder (although the tests certainly did not indicate that, at all). She was rather confident in this given the way we lost babies (hearts stopped overnight), but again, this was not evidence backed, because of a lack of diagnostic tests showing a clotting disorder. However, her OB came from a time when medicine meant looking at symptoms, not just tests. Her OB told her that since the time she was in practice many of her patients who lost babies this way ended up being diagnosed with clotting disorders many decades after the fact, because we are always discovering new thrombophilia risks, but that either way, they were successful in just using anti-clotting agents.
The treatment for clots during pregnancy is a daily injection called enoxaparin, which is rather expensive ($400/wk for 40 weeks), so insurance certainly does not want to pay.
Well, long story short, after seven pregnancy losses, she did the injections, and had a pretty textbook pregnancy. Of course, after we had the baby, all the 'evidence-based' doctors changed their tune and now insist that enoxaparin is a necessity if she wants to get pregnant again. Not just for the baby either, but for her health (since blood clots can lead to pretty sudden death for mothers).
So, yeah, basically her OBs advice, which was based entirely on intuition and five decades of actual clinical practice, saved both the lives of my daughter and in some ways my wife (again, she may have been at risk of clots during previous pregnancies).
Ultimately, medicine is not just about knowing what's in a book. These days, most medical knowledge is available for free online. When we went to UCSF, Stanford, and the Mayo Clinic, the 'care' we received included having the various conditions that can harm second-trimester fetuses listed for us and then we were explained why my wife did not have them. Of course, all these conditions we already knew about because of reading comprehension. I would not classify the information we got there as 'professional', because it was really a simple matter of looking up data in an index. On the other hand, her OBs care was actual professional care. We pay our doctors to give their opinion on our care based not just on what the books say but also based on what they have learned. An insistence on 'evidence-based' care reduces the ability for doctors to actually treat patients, and will -- inevitably, even if it takes some decades -- lead to a lack of evidence as new generations of doctors become less trusting of their intuition and more reliant on external validation.
EDIT: to be clear, it's not just a lack of evidence this treatment works. Several large-scale studies have been done in the United States and Europe (esp Britain) to see whether this therapy works at all. In Britain, where the NHS was considering this as a treatment for recurrent loss in the absence of diagnosis, the studies showed that the treatment was not effective, hence the NHS wouldn't cover it. Her OB knew of these studies and insisted they work, and also pointed out that studies done in other countries (like countries in the Middle East and Southeast Asia, where the demographics more closely fit those of my wife) did show an improvement. However, those studies weren't taken into account to help British mothers by their own national system. Thus, if my wife were British (or even in her parent's country of Canada), her treatment would not have been covered, but, because American insurance mostly pays for what the doctor prescribes, ours was paid for.
- qqqwerty 8y agoI am very sympathetic to your ordeal. But I would also like you to consider a few counter points. Consider this very hypothetical scenario. For a particular diagnosis, an experimental treatment improved outcomes compared to a control group by 40%. That may seem promising, but if the control group success rate is 10/100 and the treatment group success rate is 14/100, that means the NHS would need to treat 100 people to get 4 additional positive outcomes. If the treatment is really expensive or if it has severe side effects, then quite frankly, cost benefit needs to be considered. And another thing to consider, is its possible that your treatment was a false positive. It might seem crazy to you based on your experience, but the population is very large, and there will always be those 'exceptional' cases. That is just how it works. Also, the OP qualified his remark with the words 'deviation without justification'. It sounds like in your case the OB had plenty of justification because she was aware of studies with more comparable demographics that had better success. So really, it sounds like you just got lucky in that one of your specialists happened to have the right background. If you had had a different OB, then you would have been no better off in the US system. And finally, a personal anecdote. I suffered a fairly nasty shoulder injury playing a contact sport. The injury (completely tore my AC joint) is quite common for the sport. My HMO (Kaiser) did not recommend surgery because it only has moderate success, and even if successful, it only marginally improves quality of life compared to no treatment. Somewhat coincidentally, 3 other teammates had the exact same injury that year. One was on Kaiser, and also did not get the surgery. The other two were on PPOs and both got the surgery (I largely suspect due to the financial incentives of PPOs, they tend to over-treat). In terms of recovery, I was mostly back to full function in about 6 weeks, whereas the surgery involved a 3-6 month recovery process. And after 4+ years, I have some minor stiffness every now and then but nothing too bothersome. So basically, every time you (or your company) pay your sky high insurance premiums, just realize that some portion of that money is going to pay for mostly unnecessary shoulder surgeries for recreational athletes.
- KaiserPro 8y agoMy wife is a paediatrician in the NHS, and before that did several rotations in OB. I'm sorry you had a terrible time, but it is standard practise to prescribe Enoxaparin for recurrent miscarriage in the NHS: http://formulary.panmerseyapc.nhs.uk/chaptersSubDetails.asp?FormularySectionID=2&SubSectionRef=02.08.01&SubSectionID=C100&drugmatch=856#856 http://formulary.panmerseyapc.nhs.uk/chaptersSubDetails.asp?... Sure you can test for it, but in the absence of anything else, its a cheap, and not overly invasive. So its fair game for prescription. (My wife has had it twice.) its also fairly cheap to the NHS (40mg preventative dose is £30(~$40) for ten doses https://bnf.nice.org.uk/medicinal-forms/enoxaparin-sodium.html https://bnf.nice.org.uk/medicinal-forms/enoxaparin-sodium.ht... so about £840(~$1100) for a 40 week course) However a GP shouldn't really prescribe it, without the patient seeing a specialist first. In the NHS at least it would be the gynae department that would prescribe it. More importantly the NHS pays for what ever the doctor prescribes regardless of what it is. There is no concept of "here is the drug you should have, but you have to pay for it out of pocket"[1] the NHS is incharge of getting a good price. [1] There are very rare cases like specialist proton therapy in certain cases, or new cancer therapy drugs. they account for less than 0.1% of all cases, unlike the states where ~20% of the populous can't afford basic drugs, like routine pain meds, or antibiotics. Also, there is no concept of cutting people off if they have spent to much. So chronic conditions are treated regardless.