I’m a bit late in finding it, but The Global Mail published a fascinating and sobering feature article last week about the  heartbreaking toll of drug-resistant tuberculosis in parts of the developing world. Journalist Jo Chandler traveled to Papua New Guinea in 2011 to tell the personal stories of those affected with the disease, which is rampant in the country, including a woman named Edna who lost her 19-year-old daughter, Susan:

Tuberculosis retains the distinction of being the greatest infectious killer in human history, claiming an estimated billion lives in the past 200 years. Its toll today is still second only to HIV (and it is the major killer of people with HIV). In 2011, 8.7 million people fell sick with TB. Edna’s daughter was one of 1.4 million who died of it that year.

The story is illustrated with beautiful, disturbing photographs of villagers with the disease that alone are enough to keep me reading. But then Chandler’s narrative takes a riveting, disturbing turn:

Sometime in those few days, somewhere, someone coughed or sneezed or sang or laughed, spraying a cloud of invisible Mycobacterium tuberculosis into the air, and I inhaled. By the time my ride out finally materialises on the tarmac and I click my heels for home, it seems I have a stowaway. Eighteen months later, in March 2013, I am diagnosed with multidrug-resistant tuberculosis (MDR TB). Let’s call it accidental immersion journalism.

…

I digest all this as I recover at home, still a little shocked when I hear the phrase “I’ve got TB” come from my mouth – and still adjusting to the horrified response it often elicits. My body is sore from surgery, and weakened and assailed by the mindblowing volume and variety of drugs coursing through unhappy veins. My partner is gentle and my children attentive and my parents worried. I’m profoundly grateful to every doctor, every nurse, and for every jab and tablet and almost every bloody cannula.

I have notebooks full of stories of TB patients who die seeing none of it.

Chandler’s story first attracted my interest because of an article I wrote early this year about how the bacterium hides out in the bone marrow of patients, only to resurface years or decades later. But I found I couldn’t tear myself away from Chandler’s comparison of the treatment that she’s receiving at home in Australia (including four months of IV drugs) with that available to infected people in neighboring Papua New Guinea. And like most readers, I suspect, I found myself deeply embarrassed of my lack of awareness of this killer.

Previously: Tuberculosis may remain dormant in bone marrow stem cells of infected patients, Researchers show way to reduce prevalence, spread of TB in former Soviet Union and Coming soon: a faster, cheaper more accurate tuberculosis test

Estrogen replacement therapy may significantly reduce anxiety symptoms among girls diagnosed with anorexia, according to findings presented this week at the Endocrine Society annual meeting.

The clinical trial involved a group of girls ages 13 to 18 who met DSM-IV criteria for anorexia nervosa and had been part of a previously published cohort examining the effects of estrogen replacement on bone density over 18 months. During the study, researchers randomly assigned participants to estradiol patch with cyclic progesterone or a placebo and evaluated their anxiety levels, eating behaviors and body image perception. As a recent MedPage Today story reports, researchers found that the girls’ anxiety decreased as estrogen levels increased.

Interested to know more about the potential use of estrogen therapy for treating anxiety among anorexia patients, I contacted James Lock, MD, PhD, a Stanford professor and psychiatric director of the Comprehensive Eating Disorders Program at Lucile Children’s Packard Hospital, about the significance of the findings. He told me:

Patients with anorexia commonly have anxiety disorders, including obsessive compulsive disorder. Anxiety can interfere with treatment. There are many ways to treat anxiety in patients with anorexia such as reassurance, cognitive behavior therapy and low dose atypical antipsychotics. This article implies that treating bone loss secondary to anorexia using estrogen is an effective treatment for bone loss, which studies have not shown. It seems to me using estrogen to treat anxiety in anorexia would be a treatment that would be deferred until other options of treatments that have been shown to be useful for anxiety had failed. These data on estrogen are quite preliminary.

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The White House will be honoring thirteen “Champions of Change” who are promoting and using open scientific data and publications to accelerate progress and improve our world.

Two Stanford professors — medical-systems expert Atul Butte, MD, PhD, and bioengineer Drew Endy, PhD — are among the entrepreneurs, academics, and researchers chosen for making an impact across disciplines and for helping make “open” the default in scientific research.

The White House Champions of Change program was created as part of President Obama’s Winning the Future initiative. Through this program, the White House highlights individuals, businesses, and organizations whose extraordinary stories and accomplishments positively impact our communities.

Live streaming of the event, which begins at 10 AM Pacific time tomorrow, will be available at  www.whitehouse.gov/live.

Previously: Atul Butte discusses why big data is a big deal in biomedicine, Obama’s new open-data policy aims to boost access to federal data for entrepreneurs, researchers, Strength in numbers: Harnessing public gene data to answer a diverse range of research questions and Better Know a Bioengineer: Drew Endy

In case you missed it yesterday afternoon, NPR had a terrific piece on the proliferation of medical and health apps. As Martha Bebinger reports, these apps - which turn “smartphones and tablets into exercise aids, blood pressure monitors and even devices that transmit an electrocardiogram” – are increasingly being brought to the attention of physicians. And while many such apps undoubtedly help consumers, it’s important to remember that they’re not regulated by the FDA and don’t always do what they promise:

“It’s the Wild West and someone needs to come in and at least help the consumers and the clinicians and the payers sort through the forty thousand-plus apps that are already out there,” says [Ben Chodor, founder of Happtique, a company that reviews apps and gives those that at least perform correctly a seal of approval].

Previously: NIH releases mobile app to help women identify health risks, maintain a healthy lifestyle, Using a mobile-based app to help manage PTSD, Can a food-tracking app help promote healthy eating habits?, Mobile phone app helps manage diabetes and Turning to an app to help your health

I recently had the opportunity to talk in-depth with Stanford clinicians and faculty members about how the U.S. Supreme Court decision on the Myriad gene-patenting case may affect patient care. The answer? Surprisingly little (at least in near future). That’s in part due to the large proprietary database of BRCA mutations amassed by the company. As I wrote in my article:

…Although the ruling may be an ethical and philosophical triumph for those who believe that human genetic information should not be claimed by any corporate entity for profit, it’s not likely that patient care will change immediately, according to breast cancer clinicians at the Stanford Cancer Institute. Myriad’s experience in the field of BRCA gene testing and interpretation will be difficult to surpass, at least for a while, they said. Over time, however, the ruling should result in a freer research atmosphere that will translate into improvements for patients.

Researchers at Stanford have created a solar-powered retinal implant capable of transmitting visual signals to the brains of rats. A Medical Daily story offers more details about the study (subscription required), which appears today in Nature Communications:

To address [the] shortcomings of bionic implants, [Daniel Palanker, PhD, an associate professor ophthalmology at Stanford, and his colleagues developed a solar-powered microchip that could be inserted into the sub-retinal layers of the eye.

This device was placed adjacent to the neurons that send visual information to the brain, which should stimulate a more “natural” pattern of neural activity. Their retinal prosthetic is wireless, so its special set of video eyeglasses beams images directly into the microchip.

In this study, Palanker’s team from the Hansen Experimental Physics Laboratory placed these second-generation implants into the retinas of rats with or without macular degeneration. The researchers found that the new bionic retinas could transmit images into the minds of rats, which was observed by measuring brain activity in the visual centers of the rodents’ brains.

Brain activity returned to normal in rats with eye disease that were given these retinal implants.

Previously: Australian scientists implant early prototype of a “bionic eye” into a patient, Stanford-developed retinal prosthesis uses near-infrared light to transmit images and Developing a prosthetic eye to treat blindness

There’s an interesting post today on Shots about a family with an autistic son visiting the Please Touch Museum in Philadelphia. The museum is one of more than 30 centers for learning and preservation that are taking steps (.pdf) to increase health awareness, including responding to the special needs of visitors with conditions such as autism or Alzheimer’s. Jessica Naudziunas writes:

… it’s not always easy to take a kid with autism out into the world, especially a museum. A recent tally found that 1 in 88 children in the U.S. is somewhere on the autism spectrum. For these youngsters, if a place doesn’t have appropriate accommodations, museum-going is a no-go for much of their childhood. That’s because so often, what seems like a fun diversion ends up causing feelings of anxiety and sometimes panic.

That’s why some museums have made special accommodations. “During those hours the museum looks different,” said Leslie Walker, Please Touch Museum’s vice president for community learning.

Flashing lights are dimmed, and booming music is turned down. Kids who want a sense of security about their visit are encouraged to create custom schedules and maps beforehand. And museum employees who will teach kids about the exhibits go through sensitivity training to learn what needs a child with autism might have to interact like their peers.

Previously: Stanford study reveals why human voices are less rewarding for kids with autism, Director of Stanford Autism Center responds to your questions on research and treatment and A mother’s story on what she learned from her autistic son
Photo by Jim, the Photographer

Drug discovery is time-consuming and expensive, and failure is a strong possibility. To accelerate the therapeutic development process, the National Institutes of Health recently launched a program pairing researchers with a selection of pharmaceutical industry compounds, which proved to be ineffective for the specific use they were developed for, to determine if the drugs are useful in treating other conditions.

Today, the NIH awarded $12.7 million to nine academic research groups to reexamine pharmaceutical industry compounds to treat eight disease areas, including Alzheimer’s disease, Duchenne muscular dystrophy and schizophrenia. Francis Collins, MD, PhD, director of the NIH, wrote on his blog:

With this approach, we are hopeful that we can give these compounds a second chance, while making important discoveries for several diseases.

I am very excited about this pilot program for several reasons. As part of the design of the program, NIH developed template agreements to streamline the legal and administrative process for academic-industry collaboration—and already it’s clear that that strategy is saving months if not years of negotiations. In addition, this is our first experiment with “crowdsourcing” of therapeutic opportunities—giving the entire biomedical community access to highly active compounds and related data, and enabling anyone to make new connections to disease. I expect this model to yield some great science, and I’m optimistic it will also speed the development of new drugs to patients.

Previously: Why drug development is time consuming and expensive (hint: it’s hard)
Photo by Ano Lobb

On Saturday, nearly 200 students walked away from the Stanford campus with a new title: Doctor! My colleague was on the scene at the medical school’s commencement, during which 95 members of the graduating class earned MDs, 91 earned PhDs or MD/PhDs, and 39 earned master’s degrees. More images from the day, which featured a keynote address from Nobel Prize winner Brian Kobilka, MD, can also be found on the medical school’s Flickr page.

Previously: Stanford medical school alum fulfills lifelong dream to participate in commencement ceremony
Photo by Norbert von der Groeben

An independent group at Yale University has dealt another blow to a bioengineered protein that was once commonly used in spinal fusion surgery. The Yale University Open Data Access Project found that the human recombinant bone morphogenetic protein-2 (rhBMP-2) “provided little or no benefit compared to bone graft and may be associated with more harms, possibly including cancer.”

The findings, published in the June 18 issue of the Annals of Internal Medicine, confirm a 2011 review of the product by the editors of the Spine Journal, led by Eugene Carragee, MD, professor of orthopedics at Stanford.

What is most troubling, Carragee says, is that the Yale group found that surgeons who received millions of dollars from Medtronic Inc., the maker of the protein, misrepresented its efficacy and underreported complications. Carragee and his colleagues had previously reported in the Spine Journal that the product, marketed as Infuse, carried a range of side-effects, including male sterility, urinary problems, infection, nerve and bone injury and possible cancer risk. Carragee said in a statement released by the journal:

To put the YODA findings in perspective, one must understand the carnival-like promotion that preceded BMP-2’s fall from grace. Market boosters advised that the BMP-2 product went beyond all other medical innovations. Perhaps confusing Infuse with penicillin or the polio vaccine, one zealot proclaimed: ‘Infuse, the single most successful biologic product ever launched in orthopedics and possibly ever in medicine.’

In a triumph of understatement, the YODA group informs us that ten years after its development, ‘it is difficult to identify a clear indication for BMP-2 use in spinal fusion.’ Ten years after penicillin was developed, people were saying it had saved a quarter million lives in World War II. Ten years after the polio vaccine, braces had disappeared from grammar schools. Ten years after BMP-2’s introduction, the YODA group could not identify a single compelling indication for use – but we know it can kill you in the cervical spine and probably can promote cancer, which can then kill you.

In 2012, the U.S. Senate Finance Committee conducted an investigation into the marketing of the product, as well as into physician/industry relationships and the scientific publishing process. It named three surgeons who had particularly lucrative financial ties with Medtronic, ranging from $10 million to $35 million each. These physicians had authored some of the early studies on BMP-2 that framed it in a positive light and helped launch it into general use by orthopedic surgeons.

Carragee says it’s unfortunate that after years of this “self-congratulatory research,” physicians still have a poor understanding of the protein:

At present these ‘concerns’ regarding higher rates of cancer, sterility, wound problems and nerve injury remain poorly described. The suggested reason for this gap in our understanding, if true, is simply appalling: these complications were systemically ‘misrepresented,’ ‘underreported,’ or just “missing’ from the first decade of publications. The research to better understand those complications and risks is still before us.

To its credit, Medtronic financed the $2.5 million YODA project.

Previously: For the record: Carragee on Medtronic spine stories, Stanford-led study on Medtronic bone product dominates the headlines, Stanford orthopedist reveals problems with Medtronic spinal fusion product, and Stanford study links spine product to male infertility