Augusto Odone is an Italian economist best known for his son, Lorenzo, after which Odone named the oil that he helped develop to treat his son’s neurological disease. Lorenzo’s oil was the subject of a 1992 movie starring Nick Nolte and Susan Sarandon, and of course what most people think they know about the story they learned from the Hollywood version.
This past week Augusto Odone died at the age of 80, prompting another round of media reporting about Lorenzo’s oil.
Probably because of the Hollywood movie, this story more than any other is an iconic example of the disconnect between the simple narratives the media love to tell (and we love to tell ourselves) and the more complex reality.
The basic facts of the story are not in dispute. Lorenzo Odone, son of Augusto and his wife, had a neurological disease known as X-linked adrenoleukodystrophy (X-ALD). This is a devastating genetic disease in males, with two basic forms. Childhood onset tends to progress rapidly and typically death occurs by age 10, although lifespan can be increased if an early bone marrow transplant is given. In adult onset, symptoms may not appear until adulthood, and then tends to progress more slowly, over decades. Some boys with the X-ALD gene do not develop clinical findings. Women are carriers, with partial protection from their second X chromosome. About half of female carriers become symptomatic, with the slower adult form of the disease.
Science-Based Medicine authors tend to focus attention on practices that misuse or ignore the tools of science. This is not a criticism. As a daily reader and occasional contributor, I recognize that shining a light on pseudoscience is a critical part SBM’s mission. It is what brings me back day after day. Sometimes, however, it is nice to highlight what real science and real evidence can do.
In my world of treating patients with retinal disease, a revolution has taken place over the past few years. The most aggressive form of macular degeneration has been transformed from a relentlessly progressive, disabling disease to one which can be tamed with medication. Now, patients diagnosed with exudative macular degeneration can expect stabilization and even improvement in vision.
It is a story worthy of a Hollywood movie. Start with a reluctant hero; add controversy, Wall Street, politics, and most important of all, a happy ending.
While I’m now two full decades out of pharmacy school, I am occasionally invited to return to give a lecture or facilitate a workshop. Pharmacy education has changed a lot since the 1990′s. For me, pharmacy was a Bachelor’s degree program you started right out of high school. Today, students must have a few years of university completed before they can apply (some already have one degree), and the more common degree granted is doctorate-level, the Pharm.D. The clinical training has been bulked up and the practical training is much more rigorous. I see all this as positive change, as the practice of pharmacy has changed along with the education standard. The era of the “count, pour, lick and stick” pharmacist is disappearing as these tasks are automated or delegated to others. Today’s pharmacist has the opportunity to deliver care in different ways, including new roles like vaccine provider, and medication review/drug therapy optimizer. Many find positions that allow them to leverage their drug-related expertise to other areas of the healthcare system.
With pharmacists’ knowledge of drug products it should not be a surprise that they are consulted widely for advice by patients as well as other health professionals. Public surveys on trust show pharmacists lead other health professionals on this measure. It should also not be a surprise that pharmacists can be quite influential in shaping drug use, particularly when it comes to advice about complementary and alternative medicine (CAM), especially when it is used with conventional, science-based drug treatments. After all, drug stores are becoming (to my professional embarrassment) purveyors of all forms of CAM, ranging from homeopathic “treatments” through aisles of herbal remedies, vitamins, and other supplements. One pharmacy I used to work at sold copper bracelets, magnets, salt lamps, ear candles, homeopathic “first aid” kits, and detox packages that were purported to “balance” your pH. If there was a plausibility limit to what this pharmacy would sell, I never saw it reached. I gave the best science-based advice I could, but eventually left due to my concerns about what was on the shelves. But my time in that setting showed me the opportunity to improve care: the pharmacist is well positioned to advise on the evidence for or against any particular treatment, as well as the describe the potential risks with combining CAM with evidence-based treatment approaches. (more…)
Harriet has written some excellent recent posts about how to talk to CAM (complementary and alternative medicine) proponents, and answers to common CAM fallacies. I have written about this myself numerous times – we deal with the same logically-challenged claims so often that it’s useful to publish standard responses.
In fact, I often wonder about the seeming uniformity of poor arguments put forward by advocates of CAM and critics of SBM. Do their arguments represent common problems of thought, pathways of mental least resistance, or are we seeing the repetition of arguments resonating in the echochamber of a subculture? I suspect it’s all of those things, which all feed into a particular world-view.
Actually CAM proponents seem to fall into one of several common world views, or flavors, as I like to call them, ranging across the spectrum from pseudoscience to anti-science. There is substantial overlap, however, with common anti-scientific themes.
I recently had an exchange with an SBM reader who was demanding that a particular post be taken down, because “every single fact in the article is wrong.” I responded as I always do – please point out the factual errors, with proper references, and I will make sure that all appropriate corrections are made. This did not satisfy the e-mailer who insisted that the article was 100% false and libelous.
I recently had a clogged drain requiring the services of a plumber. While discussing the details of the job, he took out brochures and a “fact sheet” prepared by his company explaining that my city tap water was going to kill me. Fortunately, they could provide a solution – a home-wide water filtration system.
The plumber seemed naively sincere, and genuinely fearful of the cancer-causing contaminants found in drinking water. He invited me to read through the material he provided while he unclogged by drain. I did better than that. I took the time to do a quick search for some more objective information on the topic.
The focus of this particular scaremongering is the additive monochloramine, which is added to city water. According to the Environmental Protection Agency (EPA):
Chloramines are disinfectants used to treat drinking water. Chloramines are most commonly formed when ammonia is added to chlorine to treat drinking water. The typical purpose of chloramines is to provide longer-lasting water treatment as the water moves through pipes to consumers. This type of disinfection is known as secondary disinfection. Chloramines have been used by water utilities for almost 90 years, and their use is closely regulated. More than one in five Americans uses drinking water treated with chloramines. Water that contains chloramines and meets EPA regulatory standards is safe to use for drinking, cooking, bathing and other household uses.
For those who can’t get enough of Clay Jones, he is now available in multimedia through the magic of podcasts! Dr. Jones was interviewed for The Prism blog last Monday, discussing the general topic of alternative medicine and pediatrics, followed by a dive into fluoride and cavities in kids. It is available for your listening pleasure at their website or on iTunes. Next step, a semi-hostile takeover of Mark Crislip’s multimedia empire – Ed
A family has many choices to make as the arrival of a new baby approaches. What will they name their child? Will they breast or bottle feed? Should they use cloth of disposable diapers? What about circumcision? Will they vaccinate or not? Some of these choices are relatively minor while some may significantly impact the health of their child for years to come. A fairly recent addition to the long list of choices that parents are burdened with, thanks to a push from reputable organizations like the American Academy of Pediatrics, as well as private companies looking to turn a profit, is what to do with the blood in their newborn infant’s umbilical cord.
Currently the most commonly-chosen option remains to simply leave it in there. In that case, it will be discarded along with the mother’s placenta or even occasionally eaten although that is a topic for another post perhaps. Another option is to have blood from the umbilical cord donated to a public cord blood bank. These have been popping up all over the place and public banking is currently recommended by the AAP whenever possible. The final option, which is by far the most controversial (and expensive), is paying to have the umbilical cord blood banked privately for personal use by the donating child or a family member. As I will explain, while not entirely without potential benefit, the private banking of cord blood is probably not a good idea and the thousands of dollars that it costs might be better spent elsewhere. Unfortunately, because of the fear of making a wrong choice, many parents are vulnerable to being persuaded by the calculated misinformation produced by these companies. (more…)
Recently ProPublica and This American Life (TAL) released the results of an investigation into acetaminophen, the active ingredient in Tylenol. TAL devoted an entire episode to the issue, and ProPublica has published several stories on acetaminophen’s toxicity, how it can cause harm, and how it is regulated.
The investigation summarizes the key “Takeaways” as follows:
- 150 Americans die per year from accidental acetaminophen overdoses
- The safety margin (safe dose vs. toxic dose) with acetaminophen is small
- Both the FDA and the manufacturer, McNeil, have known about the toxicity for years
- For over 30 years the FDA has failed to implement measures to reduce the risk of harms it knew existed
- The manufacturer has taken steps to protect consumers but has also opposed other safety measures
While Tylenol is a single brand out of hundreds of prescription and non-prescription products that contain acetaminophen as an active ingredient, it is the brand most closely associated with the chemical. Amazingly for a drug that has no patent and lots of competition, Tylenol products are estimated to make up half of all non-prescription acetaminophen sales in the US, a testament to the power and effectiveness of marketing. (It’s also a clear refutation to alt-med arguments that unpatented products can’t be profitable, or aren’t of interest to the pharmaceutical industry.) While much of the focus of the investigation centers on the corporate behavior of Tylenol’s manufacturer, McNeil, (a division of Johnson & Johnson), it is important to keep in mind that no single company is responsible for acetaminophen sales and marketing. (more…)
First, my bias. I work in Portland and we have medical students, residents, and faculty who are DOs (Doctor of Osteopathy). Before he moved on to be a hospitalist my primary physician was a DO. From my experience there is no difference between an MD and a DO. In my world they are interchangeable. There are many more qualified applicants for medical education than positions in MD programs and some opt for a DO education. Osteopathy has a dark side.
As best I can determine from my colleagues, learning osteopathic manipulation (OM) is the price they pay to obtain an otherwise standard medical education. I have yet to see OM offered by any of my DO colleagues. It may be they know better than to offer such a modality around me given my ranty propensity for all things SCAM.
The literature would suggest that OM is left behind by most DOs upon graduation. DOs are not proud of their OM, and rarely invite them ‘round to dinner. It will be interesting to see if OM fades over time in DO school as the old time true believers die off and are supplanted by a generation of DOs trained with more traditional medical education.
OM, the small pseudoscientific aspect of DO medical school education, is a form of massage and manipulation invented in the 19th century with no basis in reality. OM postulates
the existence of a myofascial continuity – a tissue layer that interlinks all parts of the body. By manipulating the bones and muscles of a patient a practitioner is supposed to be able to diagnose and treat and variety of systemic human ailments.
Studies into the efficacy of OM find it to be ineffective for any process aside from low back pain (is there anything that does not help low back pain?), not surprising for a therapeutic intervention detached from reality. My purpose with this entry is not to review OM per se, which may be a good topic someday, but to focus on a specific application of OM. (more…)
Last week I posted a list of 30 rebuttals to many of the recurrent criticisms that are made by people who don’t like what we say on SBM. I thought #30 deserved its own post; this is it. At the end, I’ve added a few items to the original list.
What’s the harm in people trying CAM? Science-based medicine has been criticized for being too rigid and intolerant. Why do we insist on randomized placebo-controlled trials to prove that a treatment is safe and effective? Isn’t it enough that patients tell us they feel better? Isn’t that what we all want, for our patients to feel better? Even if the treatment only works as a placebo, isn’t that a good thing? What’s the harm in that?
The albuterol/placebo study
I would argue that we don’t just want our patients to think they are better, we want them to actually be better. A study that illustrates that principle has been discussed on this blog before, here and here.
A group of patients using an effective albuterol asthma inhaler was compared to 2 placebo groups (a placebo inhaler group and a sham acupuncture group), and to a group that got no treatment at all. Patients reported the same relief of symptoms with each of the two placebo controls as with the albuterol inhaler; all three groups reported feeling significantly better than the no-treatment group. It could be argued that placebos are an effective treatment for the subjective symptoms of asthma. (more…)
My first “real world” employment after completing residency was as a full-time newborn hospitalist in Houston. After spending 3 years in Space City, often rounding on as many as 30 newborn infants in the Level 1 and Level 2 units each day at the county hospital, I feel as if I’ve probably about seen it all when it comes to the nursery. I then left the babies behind while working as a pediatric hospitalist in Baton Rouge for four years, but now I’m back in the newborn business up here in Boston. While there have certainly been a few changes since 2009, many things remain exactly the same.
I help take care of a very vulnerable population in my current position: parents. Parents, in particular the young and first time variety, often approach parenting with a blank slate. Sure there is frequently a grandparent or four there for assistance, but the healthcare professionals working in the nursery are looked to for vital knowledge about how to care for the new arrival. Even some of the more experienced parents will still have questions, and most respect and follow the advice given during those first few days while at the hospital. These questions most commonly focus on topics such as feeding, vaccinations and vitamin supplementation, but I am regularly asked about a variety of routine parenting skills such as swaddling, and even baby “gear” like Angel monitors.
Parents love their children and want what is best for them, and they frequently express fear and anxiety over some of these topics. Love and fear are two powerful factors in the acceptance of pseudoscience and bad advice, which is why parents are set up to be fooled. Over the next few posts, I plan to cover some examples of newborn issues known to cause excessive parental anxiety and that sometimes lead to poor decisions, in large part because of bad information received from people who should know better.
First up is a concept that is well-known in the nursery, and strikes fear in the hearts of lactation consultants all over the world. I’m talking about nipple confusion. This is a concept that may seem silly to those unfamiliar with the world of parenting, but it is something that newborn doctors deal with daily and there is a great deal of controversy. Not “vaccines and autism” controversy unfortunately, but if after reading this post you find yourself feeling let down because I didn’t start with something sexier, take solace in the fact that winter is coming. (more…)