Anti-woo commentators are a bunch of smug and condescending...

[Ms. Toad]

296. Actually -not out of my purview at all.

I am also a patent attorney - patent attorneys are not restricted by subject matter (although I, personally, stay away most chemical patents). When I work medical devices or treatments I have to review the applicable medical literature for a variety of reasons - to understand my client's invention, to be able to describe it so that the information about how to practice the invention is available to the public once the patent has expired, to understand similar devices or treatments to make sure my client's invention is not infringing, to name a few.

And - in case you aren't aware - there is a growing overlap between physics and biology. A physics classmate of mine, as well as a later graduate of the department, now both teach biology at prominent universities.

As for using CAM for my daughter - her rare disease has no currently approved medical treatment - the only "treatment" is a liver transplant, so we are not forfeiting the benefits of any established treatments in lieu of alternative treatments. I know I am not doing more harm because I do the same kind of research I did when I diagnosed her rare disease (or evaluate any other treatment for it). Most of my research is done in peer reviewed medical journals. I look to see if the treatment is safe, first (including any interactions/interference with traditional treatment - when there is traditional treatment available). Then I look to see whether there have been studies which support its effectiveness - or which describe treatment pathways which are scientifically realistic. If a potential treatment is safe (generally), none of the research shows it makes her condition worse, and it is relatively inexpensive, we check with her hepatologist to see if he has any objections to her trying it. If he doesn't, and she wants to, she tries it. Even if it doesn't change her medical condition, it sometimes improves her quality of life. That allows her to feel as if she is doing something over a disease which is mostly out of her control (usually I am reviewing an idea she has proposed). In addition, and working through the process of research with her teaches her the skills she needs to eventually evaluate (traditional or alternative) proposed treatments herself.

As for why I would want to use my own daughter as a science experiment - I actually don't have a choice. Her disease has no treatment and there are only 29,000 people with it in the US. No treatment (traditional or CAM) will ever be supported by the kind of rock solid research that will allow her to just follow the doctor's orders because there is not a large enough pool of potential subjects for clinical trials under any time frame which is realistic to provide her with any practical assistance.

Just as an example of her traditional treatment as a science experiment - the initial "best practices" (actually - only available) treatment when she was diagnosed 5 years ago was abruptly halted by most doctors within a year based on a new study which was terminated early due to a higher than expected rate of negative outcomes (death or transplant) in patients using it at a higher dose than she was using. So we had to decide whether to have her stay on it - or take her off. She is still taking it, with the support of her hepatologist who prescribes it for her, because parallel research indicates that the dose she is taking is harmless (close to sufficient research - there is a minor question about its relation colon cancer risk - most studies show none, but some studies show a gender based link which cuts against her). More very recent parallel research suggests (again - insufficient data to prove it) that keeping her Alk Phos blood serum level low (by any means) results in a better prognosis. She is a "responder" to the medication in question (not individuals with this disease all are). It keeps her Alk Phos within normal ranges (which we tested by two trial removals and then reintroductions). So taking it (as long as her Alk Phos remains low) should delay a transplant and/or death. It may slightly increase her risk for colon cancer - but she already has annual colonoscopies to screen for colon cancer and her combined diseases already make her risk level around 50% - with or without the questionable medication. And, because her Alk Phos (and other LFTs) are lower, it improves the symptoms associated with the elevation of those enzymes - so it improves her quality of life.

But no one knows, or is likely to know, in time to help her make a decision about treatment. She is at risk for transplant and death even if we do nothing (directly, or from any of the 5 cancers for which her disease dramatically increases her risk). We have lost a half dozen friends in the last year to this disease. So we can just sit and twiddle our thumbs - or we can be a science experiment - do our best research, talk to doctors all over the country at an annual conference on this disease, talk to her doctor twice a year about our thinking (and his) on the latest researach, make sure (to the best of our ability) that what we are doing does not make the situation worse (or that any increase in risk is balanced by an increase in health or quality of life), and make sure that nothing she is doing would make it impossible for her to be listed for transplant.

But we don't have the option for her not to be a science experiment - even if only evaluated traditional medicine. And, frankly, I see no reason to make an artificial distinction between traditional medicine and CAM when evaluating what might be an appropriate component in her health care. Either way I do the same careful research - and for her, at least, both traditional care and CAM are science experiments.

(I'll fix #5 - I renumbered a couple of times)