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July 06, 2008 | 73°F Broken clouds

The Brian Lehrer Show

Following Up: The Web of Medicine

Thomas Goetz, deputy editor of Wired magazine and contributor to the New York Times Magazine, discusses his article “Practicing Patients” about the issues raised by the website PatientsLikeMe for people dealing with chronic illnesses. The piece will appear in the 3/23 issue of the magazine.


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[1]
Posted by: Stephen
March 21, 2008 - 10:20AM
Brooklyn

Low Dosage Naltrexone is a great example of a drug prescribed for addiction being used to hold back cancer:

http://www.lowdosenaltrexone.org/

http://en.wikipedia.org/wiki/Low_dose_naltrexone

[2]
Posted by: jjl
March 21, 2008 - 10:39AM

We should be concerned that our certified doctors aren't initiating such mobsourcing/knowledge sharing platforms.

[3]
Posted by: stu
March 21, 2008 - 10:49AM

when was this article published?

[4]
Posted by: df
March 21, 2008 - 11:53AM

if i were an "unethical?" phara co and noticed a potential competitor building steam on this mobsourced data i would certainly attempt to sully this "pure" evidence!

[5]
Posted by: Laurie
March 21, 2008 - 11:57AM
Portland, ME

I'd like to know what the liability is for physicians who prescribe off label.

[6]
Posted by: George Farrington
March 21, 2008 - 12:12PM
Manhattanb

I enjoyed the show on PatientsLikeMe - this concept is especially powerful when you need to look at the actions of new drugs or combinations over time. I worked on one such site - never launched - in the AIDS area several years ago (I am a pharma/health care consultant) - and the idea was to get feedback to the AIDS community rapidly so that adjustments could be made to the usage recommendations as more information became available on responses

[7]
Posted by: Nicholas P. Vessio
March 21, 2008 - 12:14PM
Sea Cliff, N.Y.

I am a retired police investigator and a licensed NYS Emergency Medical Tecnician. I have been interested in nutrition science for over thirty years. Any substance that is NOT PATENTABLE is regected by the AMA and the pharmaceutical industry. Substances such as asprin. hydrogen peroxide (food grade) vitamins, herbal medicine etc.

are rejected because there is no money in these products. To this day science is still finding out about the health benefits of asprin. Senator Dick Durban is at the forefront of proposing legislation which would affect an individual's desire to take supplements et.al. Meanwhile, a product such as Tylenol is the fifth most deadliest drug on the market. It is very toxic to the liver and kidneys. But to the AMA that's ok. Tell Senator Durban to focus his energy on the pharmaceutical industry whose products kill far more people than any vitamin or herb. They have a low incidence of adverse effects by comparison. Brian, feel free to investigate this matter as I have.In fact, why not do a segment concerning this topic on your show sometime. Sincerely, Nick Vessio

[8]
Posted by: nancy brennan hill
March 21, 2008 - 12:22PM
ridgewood nj

Did Thomas Goetz mention that meltrexor (did I spell this correctly?) was used off label for ALS? I know he mentioned MS later in the broadcast, but I thought that I heard him mention ALS at the beginning of the broadcast. Perhaps I missheard or perhaps he mispoke?

[9]
Posted by: Alan McKenney
March 21, 2008 - 12:25PM
Westchester County

Mr. Goetz blew his credibility with me completely away with his answer to the caller who mentioned the clinical studies that contradicted one of the off-label uses touted by the website.

The problem with this website is that people who don't get better are less likely to post than those who do. This is called sampling bias.

Controlled clinical studies avoid this by following _everyone_, even those who don't get better. This is why scientists take even a small clinical study more seriously than self-reported data.

Mr. Goetz does not seem to understand this issue, or even to understand that he doesn't understand. That makes everything else he says in his article suspect.

[10]
Posted by: Alexander Cohen.
March 21, 2008 - 12:39PM
Brooklyn, NY

Laurie: there is no additional "liability" to prescribing medications off-label. As a physician, I can assure you that a good portion, probably somewhere between 30%-60% of medications are used off-label. Once a medication is approved by the FDA, a licensed practitioner (MD, DO, DMD, NP, PA, to name a few) can prescribe it for any purpose. Most doctors and mid-level practitioners would not even be able to tell you, by and large, what the FDA-approved indications for a medication even are.

The flip side to the coin is that doctors are going to prescribe medications for conditions that have been shown to work. For example, I frequently give antiemetics (medicine for nausea) to people with primary headache syndromes (migraines, for example). These are well-documented in the medical literature to be very effective, and every emergency room doctor today (of whom I am one) uses them on a daily basis. I know and can explain the risks, benefits, and alternatives. If someone was to come to me asking for another medicine, one that I was not familiar with and had no reason to believe it worked, I would not prescribe it, nor would any other reasonable doctor. Although I do not concern myself primarily with my "liability" when practicing medicine (rather I like to take my patients' health and well-being into consideration), using an untested or uncertain medication is not a good idea either medically, ethically, or, in the event of a bad outcome, legally.

[11]
Posted by: David Starr
March 21, 2008 - 02:27PM
Montclair, NJ

My girlfriend had trouble sleeping, and she got a prescription for an antidepressant, imipramine, to help her sleep. After about 8 months, her mood changed and she met and fell in love with someone else. I believe this was a side effect of taking the antidepressant. If someone calls your show and says they are taking antidepressants to help them sleep, I suggest you speak about this as a possible side effect.

[12]
Posted by: Destiny Marquez
March 22, 2008 - 06:45PM
Oregon

LDN is an opioid antagonist (it blocks opioids from the opioid receptors in your body) that tricks our biological systems into restoring homeostasis (i.e., the body's normal equilibrium). Naltrexone is currently approved by the Food and Drug Administration (FDA) for the treatment of alcoholism and opioid addiction. However, when used at much smaller doses (approximately one tenth of the dose used for the treatment of addiction), it has shown remarkable effects in alleviating pain, muscle tension, and other physically debilitating symptoms that occur with Parkinsons, Multiple Sclerosis, Crohn’s, Arthiritis, Lupis, and many other diseases.

My dad, Bentley started LDN October 2004 for Parkinsons. Bentley and his family felt that it was worth trying since the side effects were minimal and the cost was less than a $1.00 a day. Within days, the muscle tension that was affecting his breathing and causing tremendous stiffness and pain, started to dissipate and his breathing returned to normal. Within a year he was able to lower his PD meds by more than 60%. Prior to starting LDN, his daily medication for Parkinson’s was 10 Sinemet 25/100, 3 Permax .25mg, 2 Artane 2mg. Today March 2008, his daily medication for Parkinson’s is 4 to 5 Sinemet 25/100, no Permax, 1 to 1 ¼ Artane and 4.5mg LDN.

[13]
Posted by: Vicki Finlayson
March 22, 2008 - 07:49PM
California

I have MS and have been taking LDN for over two years. Before LDN I was on heavy doses of opiates, did all the traditional therapy's for my MS. Every year not only did my family but my nurse saw me decline. When we educated ourselves about LDN I had nothing to loose by trying it after all the therapies I was on clearly weren't working and causing other evasive health problems. I advocate here in Calif. with our "Broken Health Care System"

our government and doctors should really do some homework and read the published articles for the past 25 years and support the research we NEED.

I'm off my shots, all the opiates and I have the quality of life back that I once lost we.

Kudos to the doctors willing to read information brought in by patients.............

[14]
Posted by: sjg
March 25, 2008 - 01:27AM
nyc

The astute physican caller, David, from Brian Lehrer's March 14th, show was speaking the absolute truth about LDN (low dose naltrexone) and its ability to help boost and balance the immune system and thus help sufferers of auto-immune diseases and many cancers live better, more comfortable lives. www.LDNinfo.org

On the flip side, the negative caller, Mike, from Brian's March 21st show, who claimed to google LDN studies and declared on radio that the studies had zero success rates, was completely false. To David's point, there ARE studies that are solidly beginning to prove LDN's effectiveness. Check out the doctor/researcher at Penn State doing wonderful studies on Crohn's disease - and how LDN is helping to lessen or disappear the Crohns. Research is also currently being done in an Italy-based study on LDN's effect on MS, and in Mali (in Africa) on HIV/Aids. The caller Mike was undoubtedly from a pharmaceutical company and he probably prefers to cast LDN in a negative light for his own company's benefit. They probably make an expensive, ineffective MS drug. LDN --a wonderful, inexpensive drug with an ever-growing grassroots-powered support-base-- won't lose steam on it's way to becoming more globally known and accepted, because it is helping people, and when something is helpful and saving lives, and making people feel better, it's not going away just because big pharma wants it to. Sorry Mike! Good going, David!

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