In the past month I have received 3 emails asking me about the CAM (complimentary and alternative medicine) series I had talked about doing way back in 2007. You can find my original post here.
First let me apologize for not answering your emails. Honestly I have been trying to figure out how I want to handle it.
As I mentioned in my original post, I wanted to start the series so parents can hear what has worked or not worked for others. But, what I did not want to happen was to give the impression that I personally approve of any type CAM. Since I never could figure out how to make sure of this, I have decided to hold off on starting posting about it.
I am a skeptic, one of "those people" who need proof for everything. Solid proof. After Paige was born I choose to stuff a sock in the skeptic side of my thought process and followed with my heart instead of my brain. It's easy to do when you have a child who needs help yet no one has the answers. But, after awhile I was no longer able to quiet the skeptic and she now rules my head again.
Do I believe that all CAM is fake? Absolutely not. I think that some forms of CAM are now widely accepted as part of regular medical care. But, I don't want to use this blog to mislead anyone into thinking that some forms of CAM are worth shelling out tons of cash, simply because it has appears to have worked for a few.
What also makes this topic very hard for me is that some of the people in my life, that I admire and love deeply, are very much in favor of CAM. I cannot find a way to discuss it without feeling as if I am dismissing their experiences.
On a side note... My blog anniversary (it's been 2 years since the first post.) has come and gone and I never realized it (I blame it on my addiction to facebook-hehe). I want to thank all who have been a part of our discussions. Talking openly and honestly is not always easy to do, so please know that I am forever grateful for those who share their stories and thoughts here.
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A community of people dedicated to the open discussion of the long term effects of prematurity.
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- ThePreemie Experiment
- I am the mother of 2 preemies. My daughter was born at 25.5 weeks and my son was born at 35.4 weeks. I am passionate about helping to educate others on the long term impacts of prematurity.
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20 comments:
Hi Stacy,
I have no problem with skeptical thinking - I endorse it completely ! I just feel we do not hold allopathic medicine to the same standard we hold CAM. We naturally believe that if it comes from big Pharma or out of the Mayo Clinic it *must* be valid. We accepted without any scrutiny the vast unchecked, unvalidate medical experiment called neonatology even AFTER more than 50 percent of what was once 'standard of care' was proven not only to be not helpful, but actually harmful to outcomes.
I think we should view with the same snake oil aversion the pseudo "junk" science that pervades Western medicine. I believe healing and health are possible and I think we are a mile off the mark about how to make that happen.
Sheila
Helen Harrison writes:
Great Topic Stacy!
Jane Brody apparently thought so too, because this is the subject of her column today in the New York Times.
http://www.nytimes.com/2009/01/20/health/20brod.html?_r=1&ref=science
Brody is particularly interested in unproven therapies for autism, and she gives examples of families who are trying various of these therapies with varying results.
She calls attention to a book that has just been published by Dr. Martin Fitzpatrick a doctor whose son has autism. It is entitled "Defeating Autism: A Damaging Delusion" (Routledge,2009)
The author likens the alternative medicine approaches to autism to a return to "medicine's dark ages."
Sounds interesting.
Yours for evidence-based therapies,
Helen
I think its wonderful that you share the vital information needed to be discussed on the issues of prematurity. And how wonderful for paige to have overcame her journey of prematurity to now see her growing nd learning new skills each day. To blessed with her sweet smile and great strength. Some moms have actually made montages on youtube of pictures in the NICU of how there child overcame prematurity at the start as a tiny infant and shows pictures of them growing over time gettign bigger and stronger. I made a video of Lilike on youtube, which has some newborn pictures and newborn footage of her filmed having her 1st bath usptairs at 5 days old and after that she was taken back down to the NNU. I added pics of her growing u with music. But instead of having it at www.onetruemedia.com I want to create a new version through windows movie maker.
We never did film her in the NNU. I actually wish we had done that now filmed her the 1st night I could have zoomed in on her face without having to be near her or hold her, that way I would not have gotten in the way of the nurse or my babies needs. And could have taken the camera back to my room and looked at her sweet face that way. We did film her one more time as a newborn when rooming in with her at 8 and 9 days old.
I am so glad you are taking a skeptical approach! I have found that many (not all) CAM advocates really go in for bullying unbelievers and also laying on the guilt. To me, this makes them all the less creditable -- but it is still rather effective as I do not have the time or mental energy to deal with them. Some CAM no doubt works, but this should be shown using sound studies.
I don't usually post the the "Amen" type of comment, but in this case I feel that Sheila's response is right on the money. 16 years ago I was the "Well, the Doctor said.....so therefore it must be....." type of person. Now -- let's just say I have become something of a medical athiest. Both conventional and alternative medicine have their place in my household. Skepticism is a VERY healthy viewpoint!
Helen Harrison writes:
Being skeptical means subjecting both allopathic and alternative therapies to the same sorts of proof of safety and efficacy.
Many mainstream therapies have never been proven safe or effective for infants(and that includes just about everything done to babies in the NICU).
And many promising "alternative" treatments never get adequate trials of safety and efficacy because it is not in anyone's financial interest to conduct the studies.
I just sent Stacy, privately, some interesting info on a possible "alternative" treatment for diabetes -- salsalate -- that no drug companies will research because it is too cheap --like aspirin -- so, what's in it for them?
This is where taxpayer money should be directed, and thankfully, it is currently being used to study this promising therapy that's been around since the 1870s.
Helen
TPD. Actually, "allopathic" medicine is held to evidence-based standards of "proof" of efficacy and safety - I don't know of any form of CAM that has been demonstrated effective by scientifically accepted standards (note I didn't say safe, because something can be totally safe yet totally ineffective). It is true that the standard of care does change over time - but it is *in response to the data* that would not exist without those pesky evidence-based studies.
What "standard" is CAM held to? None that I know of - anyone can peddle any crazy idea or technique and support it with wholly anecdotal "evidence" such as testimonials.
I just scrolled down before hitting "publish" to see whether I was the only one going to post with this viewpoint, and I guess this is one (rare) area where Helen and I are in total agreement.
TPD. What would be in it for a drug company...hmm...many ways to profit from use of a known compound in a new way. Look at the case of progesterone - it is an old compount being used in an OLD way. Yet, the makers of the 17P injectable are surely profiting.
Not to mention the fame and fortune for solving such a huge health problem. Yes, there are internal politics, but so many ways around that. If our medicine cabinets do contain a cure for diabetes, there would be no conspiracy big enough to keep it secret.
Helen Harrison to TPD,
Re: What's in it for drug companies --
Here's a quote from a recent Wall Street Journal Article on salsalate and the drug companies:
"Since salsalate already is sold as an inexpensive, generic arthritis medicine, pharmaceutical companies have little financial incentive to fund research.
The Joslin Center (at Harvard), which has received at least two patents based on Dr. Shoelson's (salsalate) research, is considering seeking support from foundations for the large multiyear studies that could be required for FDA approval."
Meanwhile NIH is funding a yearlong trial with more than 400 patients.
Helen
It is Harvard beating them to the Patent Office that is the problem for the drug companies, not the fact that salsalate is an arthritis medicine.
In fact there is a LOT of interest in salsalate, not a lack of interest.
Folks at Harvard and other universities are in competition with the drug companies, of course they are going to banter back and forth and disparage each other.
Helen Harrison says:
My reading of the WSJ article was that no one in the pharmaceutical industry was interested in salsalate (which has been around as an alternative therapy for diabetes since 1876) so the Harvard-affiliated Joslin Diabetes Center has been out trying to raise the needed money to test it for FDA approval. (for treating diabetes -- it is probably in use now for this purpose, off-label)
The Joslin Center (which has the patents) "really want[s] to see it remain inexpensive," according to the director of clinical research.
Another doctor who consults for pharmaceutical companies was interviewed for the WSJ article. He doesn't think salsalate (an anti-inflammatory) will pan out as a useful treatment. So pharma and its consultants seem to have been uninterested in the past and remain so.
Helen
I don't know if there has been a recent change, but as of last year, 17P was only made in house by compounding pharmacies in the US. Mine cost under $100.
So no, P17 is not making some big pharma company huge bucks.
TPD. I guess among scientists there is a difference of opinion on whether the drug will "pan out." It was a good choice of words, as "pan out" encompasses both financial success (panning for gold is what I assume to be the source of the phrase) and effectiveness.
Still, it is the patents that make it unattractive to the drug companies (they were filed years and years ago and their decision to pass on the research is more recent)- BUT it would not behoove them to do anything other than sing the praises of patents, they would not make even an offhand remark that proponents of patent reform could use against them. The drug companies are generally the greatest beneficiaries of patents.
The only thing I'm saying here is that the reasons for salsalate funding not coming from the drug companies are not as they might appear (though they are fine with us assuming this, because they are not going to cut off their nose to spite their face by complaining about someone else's patent), and Harvard is not acting out of the goodness of its heart...
TPD.
From the "Biomedical Systems" website:
"17P Therapy must be prescribed by a physician, and the compound medication is not readily available at the local pharmacy. Biomedical Systems works closely with the patient and the pharmacist to ensure that the 17P medication is delivered directly to patient and in a timely manner."
Helen Harrison asks:
TPD, do you know when the patents on salsalate were filed by Joslin?
Do you know what the patents were for, exactly? This wasn't explained in the article I read.
Do you know why pharma failed to file for such patents first, since this treatment has been around for well over a century?
Are you, by any chance, one of the MD consultants for pharma?
Curious,
Helen
Sheila wrote: "I just feel we do not hold allopathic medicine to the same standard we hold CAM. We naturally believe that if it comes from big Pharma or out of the Mayo Clinic it *must* be valid. We accepted without any scrutiny the vast unchecked..."
I completely agree with you Sheila! The fact that my skepticism comes with me into every doctors appointment is the reason why some of Paige's docs roll their eyes when they see me. lol
TPD wrote: "What "standard" is CAM held to? None that I know of - anyone can peddle any crazy idea or technique and support it with wholly anecdotal "evidence" such as testimonials."
This is exactly my problem with CAM. I am not saying that some of it may not work. Acidopholis for example. It used to be considered CAM but now is used in mainstream medicine. Melatonin is another example.
But there are other types of CAM that are completely unbelievable and in my opinion, prey on the vulnerable who feel that medicine has failed them.
To TPD -
"the COMPOUND medication is NOT readily available at the local pharmacy"
The reason it isn't readily available, is because it has to be compounded! That is because it isn't being made by a major pharma company in the US. So, you can't readily get it at Walgreens. You have to go somewhere special for it, like a place that compounds hormone supplements and stuff. Biomedical Systems is NOT big pharma. They either compound 17P as needed or have some other pharmacy do it for them.
TPD. I am not in any way involved with pharmaceuticals.
I don't know anything specifically about the patients or the patents.
I am speculating about the patent based on the general timeframe from invention to patent filing to patent issuance - 3-5 years is common, but it is often longer in the case of pharmaceuticals. If you want to know exactly, you can look up the patents and see the filing dates. www.uspto.gov is a free site. If you have the patent numbers, you can go to the patents directly. If you don't, start with a probable inventor name or an assignee, and if that doesn't yield anything, searching by key words should eventually get you there.
Pharma may not have realized the potential of salsalate (or realized it late in the game), or may have made a business decision not to put money in that area, or their scientists may really believe it is not useful, or any or none of those things. As it stands now, I would suppose it just looks like a bad investment, whether the science turns out to be good or not.
Honestly, my only point was that salsalate was not a good example of pharma supressing a miracle cure because it can't profit from it. I think salsalate *is* a good example of how the patent system works to encourage innovation, and how through that system it is possible to compete with big pharma to bring alternative, affordable cures to the public.
TPD. Helen I am not being secretive about my occupation - I posted awhile back in response to the "back to work" thread and thought it was pretty obvious that I'm a patent attorney. One who obviously struggles with work/life balance. But don't work for pharma, I don't have that background - those folks are usually chemists and the like.
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