Dengue fever is caused by a virus transmitted by mosquitoes.  It’s the most common arthropod-borne illness in the world, but, like malaria, has been of only limited concern in the U.S. over the last half-century.   The illness is characterized by high fevers, rash, and terrible pain that gives it its nickname: Breakbone Fever.   As unpleasant as it can be, a case of Dengue usually passes and leaves the victim with nothing worse than bad memories.  For a typical American traveler, this can lead to an unpleasant vacation.

But for people who are repeatedly exposed to the virus, it can have much more devastating effects.  Exposure to a different strain of the virus can lead to Dengue hemorrhagic fever (DHF), an frightening illness that is rarely fatal when patients have access to good medical care.  But many areas where Dengue is endemic do not have access to good medical care.  People with DHF have high fevers, but also develop bleeding and vascular leak, causing fluid to accumulate in places it shouldn’t, such as the lungs, and can lead to shock and death.

While Dengue fever is a painful inconvenience to travelers, it can be deadly if it becomes a endemic in an area because of the risk of DHF when re-infected.  This is the primary reason surveillance and prevention are so important.  Which leads to problem number one (asie from the outbreak itself): according to the Times, the CDC is going to be cutting back the Division of Vector Borne Infectious Diseases, which is responsible for important emerging diseases such as Dengue, West Nile Fever, and Lyme disease.

The second problem is also economic, but in more human and less bureaucratic way.  The Times is reporting that residents of Key West, who are dependent on tourism, are reluctant to acknowledge and deal with the epidemic.  About five percent of the Key West population is believed to have been exposed to Dengue, a huge number considering that this part of the U.S. rarely sees the disease.  It is also a popular tourist destination, meaning that travelers can acquire it, and bring it home to their local mosquitoes, potentially leading to its establishment elsewhere.

The worst possible reaction to an epidemic is denial, but reactions in Key West from residents and officials has been disappointing.  One local health official called the CDCs report “alarmist”.  There are active mosquito eradication efforts ongoing, but as we saw with West Nile Fever in other parts of the country, it is possible to inform the public without panicking them.

Prevention of mosquito-borne diseases like West Nile and Dengue requires not only local control of populations, but personal protection.  Minimizing exposed skin, and applying a repellent containing DEET (usually at a concentration 20-30%) can provide protection from bites thereby minimizing the risk of acquiring mosquito-borne diseases.

And tonight my family gathered to remember a cousin who died last summer.  She was a remarkable woman, and her husband and children spoke eloquently and lovingly over drinks and excellent food, as she would have loved.  It gave me a chance to reflect on my cousin’s life, and my friend’s, and to take solace in the company of my parents and sisters, who rarely have the chance to be in the same place at the same time.  I only wish my wife could have been here to share in some of that comfort.

People who want to comfort you often tell you tomorrow is another day and other such nonsense.  People like platitudes.  But they’re right, I suppose.  Tomorrow morning I’ll sit down with my parents and my sister’s family over bagels and lox, and talk about the heat, our summer plans, and how remarkable our children are.

There’s nothing I can write about grief that hasn’t already been written, but since we are all destined to experience it, we all have to find our own way to understand it.  Grief can be a lens, one that magnifies fear and uncertainty, but can also bring into sharper focus that which is important—friendships, successes, failures, loves lost and gained.  We don’t get to choose a life without grief, unless we choose a life alone, or enough like alone that there is no real difference.

I find that fascinating.  Europe and Japan seem to have been ahead of us for a long time on these sorts of uses.  I’d love to find out what underlies these trends.  I have some ideas, but they are unsupported by data as far as I know.  I’d like to see a comparison of white lower income users and minority lower income users as well.

By the way, don’t miss Tell Me More.  It’s a great show.  If you can’t get it on your NPR station, write them and listen to the podcast.

Around that time, my folks bought a computer.  I think the first one was an Apple II +, which was roughly shaped like a flattened typewriter on which you could perch a TV.  My parents took computer programming classes at the local community college, and we used the computer to play with programming, and even to do some very basic word processing. (For you young folks, the word processors were characters and markup—there was no WYSIWYG.)

Then the Macintosh came out.  It was beautiful.  And my parents got me one as a graduation present.  Always ahead of the curve, they were (and still are, mostly).  My computer served me and many others through my years in Ann Arbor.  During my time there, typed papers faded away, and computing centers (filled with Macs) opened up in central campus locations.  And one day, while sitting at one of those computing centers with a friend, I was told I could write a letter to a friend of ours overseas—on the computer.  It was called “electronic mail”, and it was instantaneous, and no, it didn’t cost anything.  Remarkable.  Of course our email addresses at the time were rather different as I recall.

This was an exciting time.  In high school we had learned how to use libraries to our advantage, searching card catalogs, reference indexes, and huge books full of citation indexes.   When I got to college, we continued with this system, with a little help form computer terminals that could help us find the huge books that helped us find smaller books and articles.  By the end of college, I’m not sure anyone used a card catalog or any of the heavy tomes, or even knew where they were.

All of that seems rather quaint now.  I can sit here at my computer and search for articles about, for example, direct current cardioversion, or murine models of MDMA tolerance.  Often enough, I can find the full text with citations, and the citations themselves are linked to their sources.

The technical aspects of science blogging aside, I don’t think we could have had science blogs twenty years ago.  There was no way to get up to date information on discoveries, no way to quickly find references, no way to produce a well-referenced post on breaking science news.  Writing a blog post without modern information science would be more like writing a term paper.  And who wants to read a blog that’s only updated a couple of times a year?

Urinary tract infections (UTIs) are a very common problem, especially in women. The link provided offers some very good information, but briefly, women’s urethrae (the tube the urine comes out of), are closer to the rectum than those of men (who have a built-in “spacer”). This allows bacteria from the colon to creep over to the urinary tract and cause burning, pelvic pain, frequent urination, etc.

I treat UTIs daily. Most are uncomplicated, but some are quite serious (usually in the elderly and chronically ill). As medical problems go, I love UTIs. When a healthy, young woman comes in with the usual symptoms, a quick test can confirm the diagnosis, and, usually, three days of inexpensive antibiotics fixes it. The patient is happy, I’m happy, everyone’s happy. But then there’s the orange stuff.

A few years back, a medication called “phenazopyridine” became more widely available as an over-the-counter drug. It is marketed to treat the symptoms of UTIs. It turns urine and other body fluids bright orange. This medication is useful for reducing the symptoms of UTIs, but does not cure them. The FDA does mandate certain labeling for the OTC preparations, but I can tell you from experience, the subtlety of this distinction is, well, subtle. Fortunately, you don’t have to rely on my experience. Someone bothered to study the question. Most patients do not realize the difference between treating the symptoms and treating the disease. This leads to delay of treatment, and the infection can become more serious. To add insult to injury, phenazopyridine’s orange pigment interferes with the most common tests we use to diagnose UTIs.

In discussions of medical ethics, the concepts of “paternalism” and “patient autonomy” are often thought of as being in opposition to each other. It is sometimes in the name of autonomy that medications are made more easily available to patients by skipping the physician prescribing process. (Also, over the counter meds are quite profitable). This can be very useful for medications such as ibuprofen, or Plan B (post-coital contraception), but any time you cut out the expert, certain risks accrue. Paternalism isn’t the opposite of autonomy. The two work together. Patients see me for my expertise. They don’t consult me about movies, art, or (thankfully) religion—just medicine. They do this because I’m the one with the training. Giving a patient knowledgeable advice is not paternalistic—it’s what they came here for. I don’t paternalistically command my patients to do anything. I dole out advice, and they are free to follow it or not.

Orange urine not only removes the expert, it fools the patient. It does not increase autonomy, it actually decreases it by deceiving the patient, perhaps causing them to become more ill.
<End of rant>

Or not.

But at least for today, I can share an interesting news item about Avastin, a chemotherapy drug made by Roche/Genetech. Avastin is a pretty remarkable drug. It inhibits angiogenesis, the process by which cancers develop a blood supply which both nurtures them and allows them to spread. It’s also been remarkably effective in the treatment of macular degeneration, an eye disease that can lead to blindness.

In 2008, an FDA advisory panel recommended against Avastin being approved for metastatic breast cancer. Despite this, the FDA approved the indication. Now, an FDA panel is recommending removing this indication.   The panel felt the data showed little benefit in progression free survival or overall survival, and an increase in adverse events.  Many oncologists would view any decrease in disease as a useful measure in treating advanced cancers, and see the “hope” as a worthy enough benefit.  But this is a costly drug, and at least according to the studies cited, not without harm.

This is somewhat—but only somewhat—reminiscent of the bone marrow transplant (BMT) controversy of the 1990′s and early 2000′s.  At the time, BMT was being used for the treatment of advanced breast cancer.  The idea behind BMT (and stem cell transplant) in this situation is relatively simple: one of the things that limits how much chemo you can give a patient is its effect on the bone marrow.  Since a little chemo often works, it was thought that if a larger, cancer-killing dose could be delivered without killing the patient, they’d have a much better chance of survival.

So bone marrow (or stem cells) were harvested from the patient, who was then subjected to otherwise-fatal doses of chemotherapy (BMP is used very differently in blood cancers).  If the patient survived the chemotherapy, they were re-infused with their marrow cells.  If they survived this process, then perhaps they would be more likely to survive their cancer.  Except they weren’t.

Bone marrow transplants are expensive and dangerous, and require a patient to go through a period in which their immune system is essentially absent.  Most transplants involve prolonged hospitalizations, time which, in a patient with advanced breast cancer, might be spent just about anywhere else.   The data eventually failed to show sufficient benefit from the procedure, and it was largely abandoned for this indication.

If the FDA goes with the panel recommendations, Avastin could still be used for breast cancer, but that use would be “off-label” and would not be covered by insurance.  In this case, despite its expense, some people will probably continue to use it while more data accumulate.  A marrow transplant is prohibitively expensive, but Avastin is only almost prohibitive.

I will be interested to see where the data finally lead us with this terrific (in many other indications) drug.   I hope that oncologists don’t use it solely for its “hope” value.  There are other ways to give hope than by a needle.

The book is Breakthrough: Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle.^{(amzn/b&n/pwll)} When I read the preface, I had some reservations.

This book is based on a true story, and relies heavily on primary historical sources and documents.  With one exception, detailed in the section Notes and Sources, all characters are historical figures.  Most dialogue and incidents have been drawn from contemporaneous sources, but in some cases have been invented or augmented for narrative purposes.

This gave me pause, as there is something about authenticity that seems particularly important in both history and medicine.  We’ve all read histories, and we’ve all read historical fiction, and most of us have an idea of which is the better read.  One of my favorite authors in the genre, Rebecca Skloot, said in a recent interview:

When you write nonfiction in a way that will hopefully read like fiction, with scenes and dialog, there’s an assumption that you made it up or made some things up. When I do Q&As, people in the audience will ask, “So how much liberty did you have to take?” Not did you take any, but how much? There’s this assumption that it’s impossible to recreate history in a way that reads like a story.

[...]

I think it’s interesting that people assume that when they read dialogue that took place in the 1950s, it was made up, because I wasn’t there. But in fact there are ways you can recreate that accurately in reporting. It is absolutely possible to recreate nonfiction in a narrative way and still be factual. It takes a heck of a long time, but it’s worth it.

So it is possible to create compelling and accurate dialog.  But authors Thea Cooper and Arthur Ainsberg chose a particularly difficult protagonist around whom to build a story.

Elizabeth Hughes was the daughter of a powerful American politician in early 20th century America.  She was also one of the world’s first insulin patients.   At the time of her diagnosis, the most sophisticated treatment for diabetes involved controlled starvation, a horrific process described in some detail in the Breakthrough. Dr. Frederick Allen, the doctor behind the starvation protocol, believed that something like insulin was just around the corner, and that it was worth putting his patients through the misery of starvation to help them survive long enough to take advantage of this cure.

As we know, he was right.  The heroic and probably-insane Frederick Banting received much of the credit for this discovery, and he was hardly unsung.  Elizabeth Hughes, however, was intentionally unsung.  She hid her diabetes for the rest of her life, and her role as one of the first patients to receive it was buried in time.

The authors’ narrative is more than readable, and from the available sources about this intensely private person, they created a complex and likable protagonist.  But some of the motivations attributed to her later silence were part of the “augmentation” of available historical documents.  At one point in the story, the powerful Charles Evans Hughes, Elizabeth’s father, is portrayed as betraying his instinctive reticence and sense of duty to call up  Banting and pull some strings to get his daughter the insulin that would save her life.  But this phone call never happened, or at least it’s never been documented.

And I can live with that.  The book successfully weaves together the personal struggles of the patients, doctors and scientists living and dying on the edge of one of medicine’s greatest discoveries.  It also captures the beginning of the modern pharmaceutical industry, and how Eli Lilly and Company was poised to take advantage of this new discovery.  The scientists in Toronto were working day and night to come up with a process to reliably isolate insulin, but once they did, Lilly was able to turn it into an industrial process, quickly supplying insulin to thousands of diabetics.   Cooper and Ainsberg create vivid images of the solo chemist sweating over borrowed equipment, the industrial might of a large corporation, and Lilly employees spreading across the Midwest to talk slaughterhouses into harvesting pancreases by the ton.

Breakthrough is to be published in Fall of 2010 by St. Martin’s Press, so it won’t be out in time for a summer read.  But it should be an interesting one to discuss with friends over apple cider, something that many diabetics can enjoy with caution thanks to the discoveries documented in  this book.

An advance proof of this book was provide to me at no cost by the publisher.

My explanations for the move is basically one of ethics and credibility, and is documented back at the Scienceblogs site.  I enjoyed my time at Sb immeasurably, but it was time for a change.  Also, the version of Movable Type used at Sb is very difficult to work with.  It’s nice to stretch out a bit with wordpress.

So welcome back, and thanks for following me here.  Details to follow.

My formal ethical training began in medical school with an introduction to the basic concepts of medical ethics. This training continued as I encountered difficult cases and thought through them, often with the help of the hospital ethics committee. While I haven’t continued my formal education in ethics, I’ve continued my own reading, and I enjoy writing on ethical conundrums.

I’ve been blogging now for over three years, which, in internet time, is quite a while. During that time, I’ve begun to take the writing itself more and more seriously. I’ve begun to recognize the implications of the medium itself, especially in conversations with mainstream journalists. We bloggers are, for better or worse, part of “the media”.  So I’ve had to learn something about journalism ethics as well.

This has changed the way I write. When I look back at some of my earliest posts, I cringe. In many ways that’s a good thing; as it turns out, I have the ability to learn and improve. My commenters and my colleagues help keep me honest, and without them, I’d write just as poorly as I did five years ago. I’ve also expanded the type of writing I do. In addition to my always well-reasoned rantings and my discussions of science-based medicine, I’ve done some more investigative pieces, interviewing sources, and consulting other journalists about ethics and approaches.

Given that much of my writing is very critical of unethical medical practices, I don’t have a lot of wiggle room in my own public behavior.  This isn’t to say that to be ethical is to be perfect; far from it.  But behaving ethically is hard work that involves hard decisions, and frequent mistakes.

ScienceBlogs has not made such a mistake. With the mishandling of the launch of a commercial ad-blog, Seed Media Group showed incompetence and mismanagement.  They also showed that they do not consider themselves (or we bloggers) to be “media” or journalists.  Whether we like it or not, we are the media, and while we may enjoy a great deal more freedom in style and content than most mainstream media, we cannot claim immunity from their ethics.

It is for these reasons (and others, most of which have been eloquently and completely laid out by Bora Zivkovic) that I’m leaving ScienceBlogs, something I do with great regret.  I have gained immeasurably from my association with Sb and with the people here.  It has given me incredible opportunities.  But despite the advantages in exposure, the fit just isn’t good anymore.

This is a personal decision, not one that can be generalized to include anyone writing here.  The bloggers here are some of my favorite science writers, and always will be, whether they remain at Sb or go elsewhere.  I have nothing but respect and admiration for them.

As the science blogosphere has evolved, and as my own writing has, I feel that the risk of leaving is not what it might have been once.  I will continue to write White Coat Underground at my old wordpress site for now, and will announce further plans there.   And I will continue my occasional pieces at Forbes.com and Science-Based Medicine.

In small children, with their little airways, pertussis often leads to hospitalization, and not infrequently kills. It kills children who should never have been put at risk, either because their parents refused to vaccinate them, or people around them did and gave them the disease.

Children and adults who should be vaccinated but are not represent a public health failure, and in the case of parents who deny their kids the vaccine, an ethical failure as well.

As a reminder, this is what pertussis looks like in little kids.

There is a small but vocal movement of people who refuse to believe that skin cancer caused by sunlight is a significant health risk.  These people tend to also believe that the risk is being purposely hyped by others, and that our current approach to skin cancer prevention is causing an epidemic of vitamin D deficiency. Leaving aside the seemingly insane denialism regarding sunlight and cancer, there are two broad problems with this article.  The first is pretty bad.

With the summer months upon us I wanted to find out firsthand what exactly the mantra is that dermatologists are telling patients. So I went undercover to several San Francisco dermatologists in order to see if there is legitimate concern about the sun-scare media hype. Are these doctors being sensible or going overboard when it comes to advice on sunscreen use and skin cancer prevention? Is the sky falling with dangerous UV rays or are we being induced into a media panic?
 

He goes on to give links to recorded conversations, and prints out partial transcripts.  He does not specify whether or not he received permission to record these conversations, as required by California law.  Whether or not the law requires it, the writer should have disclosed to his readers whether or not he had received permission.  This information is important in interpreting the conversations he reports to us.  

The next problem is broader, and deals with physicians’ willingness to lie on behalf of patients.  The author’s presumably-clandestine recordings of his deceptive visits to dermatologists (catching my breath—this is striking and requires a digression.  The act of deceiving these doctors is not only unethical, but can influence the outcome of the visit.  Doctors make the assumption that most patients are interacting with them out of good faith, and are not intentionally deceiving them.)

In the first conversation the author has with a doctor, the interviewer makes it clear that he wants a mole removed, and the doctor essentially leads him to say “the right thing” so that insurance will cover the procedure.  One thing the author seems to miss is that the dermatologist is going to be paid whether or not insurance covers the procedure.  If the insurance company says “no”, the patient will be billed.  The doctor is lying for the patient, not for herself.  

Data have shown that physicians are willing to lie on behalf of patients. There are a number of reasons that this poses ethical problems.  It could be argued that the doctor is lying to help get the patient something that they need, and that lying is a peccadillo compared to the benefit.  This can backfire in a number of ways, not least of which is that both the doctor and the patient can probably be prosecuted for fraud, something that is unlikely to be of benefit to either one.  

But there is a fine line between a lie and a truth, one that anyone familiar with the intimacies of the exam room will often experience.  As a doctor, your overall impression may be that the patient is at high risk for coronary artery disease, but perhaps the patient doesn’t quite meet the insurance company’s criteria.  You can then lay out the cost of the test and the risks and benefits for the patient, but I wouldn’t be surprised if some doctors took the short cut of asking, “are you sure you’ve never had any chest pain or difficulty breathing?”  

He begins his second dermatology visit by telling the doctor that he has a family history of melanoma, and finds fault in the doctor’s description of the statistics of the disease.  The problem of properly rendering statistics is a common one, and he links to an excellent piece by Ivan Oransky explaining the difference between relative risk and absolute risk.  Unfortunately, he uses this to spin a tale of some sort of dermatology conspiracy to inflate cancer numbers.  Skin cancers (including melanomas and non-melanoma skin cancers) are very, very common, and though many are not fatal, their diagnosis and treatment can be expensive and disfiguring.

His visit continues and the doctor tells him that insurance won’t cover his mole removal because it’s not necessary, and refuses to lie in the medical record. The doc then gives some sound medical advice about how to prevent skin cancers.

I then ask what measures I should take to prevent skin cancer. I’m told to apply sunscreen 24/7, wear a hat and sunglasses, as well as avoid the sun as much as possible. (The only thing she doesn’t mention is to live underground with the mole people.)

“Mole people”?  He asked the doc how to prevent skin cancer, the doc gave the correct answer.  It’s up to the patient to decide if the application of sunscreen is too onerous for the potential benefit.

How cool is that?

The crack SEED management team has made some significant changes on the new Pepsi nutrition blog. They have placed a small, grey band on the banner that says “Advertorial” (a word I abhor, but whatever). They have also placed the Pepsi logo everywhere and made it fairly clear that it is Pepsi content.

This is a move in the right direction as far as transparency and ethics are concerned. As I read the extensive comments being left across the blogosphere I see some that show a misunderstanding of the problem here.

The problem is not that Pepsi is “corporate” or “commercial”. This is not about “selling out to The Man.” What Pepsi produces and how it does is ironic but beside the point. The main problems are:

1. Lack of transparency, which is somewhat improved
2. Visual appearance, despite caveats, very similar to “real” science blogs
3. Content produced by and for the benefit of the company that bought the space