Thursday, November 29, 2007

Not-So-Rare Rare Diseases

I’ve been writing about epilepsy recently, a neurological disorder that affects about 1% of the population (especially infants, young children, and the elderly). With the roughly 80 million Baby Boomers starting to retire now, the number of people with epilepsy will increase even more, since the incidence increases in people 65 and over.

Despite these statistics, however, epilepsy research is underfunded for its incidence rate. This is due in part to stigmas that still surround epilepsy, such as the misconceptions that epilepsy is a sign of mental illness or low intelligence, or that it is contagious. These stigmas make some epilepsy patients and families reluctant to speak out about the disease, and consequently there is less patient advocacy for research funding. In medicine as in life, the loudest voices often get the most attention.

It doesn’t help that the National Institute of Neurological Disorders and Stroke (NINDS) lists the National Organization for Rare Diseases (NORD) website as a helpful organization for epilepsy patients, thus implying that epilepsy is a rare disorder. Perhaps NINDS refers readers to NORD because epilepsy is an umbrella term for a group of benign and malignant neurological syndromes, and some of these syndromes are less common than others. Since the incidence of epilepsy is bound to increase in the future, however, I think it’s important to rethink how to categorize epilepsy. It is complicated? Yes. Is it rare? No.

Semantics, stigmas, politics, money: how is medical research funded?

Monday, October 22, 2007


It happened so quickly, I hardly had time to understand it. At my daughter’s swim lesson this week, as I sat across the pool and waved at her, one of the other children in the class lost her grip on the side of the pool and began bobbing up and down in the water. Just as I thought, “wait a minute - what’s that kid doing?” the lifeguard ran over and pulled her out. The instructor was just a few feet away in the water; the girl’s mother was about 10 feet away on the side of the pool, and a posse of parents were watching their children swim in different classes – and yet the girl lost her grip and went under, almost unnoticed.

The speed at which emergencies happen still shocks me. The day my daughter fell on the playground several years ago, I was standing right next to her but had looked away for a moment. When I looked back, I found her crying and bleeding, the skin split under her chin. How quickly can I stop what I’m doing and thinking, understand what just happened, and react the right way when I need to? Smoke pours out of a house window, a woman collapses on a train, a car lies upside down on the road, its wheels still spinning – I have witnessed all of these.

An emergency requires you to stop and focus, and that can be hard to do because we’re so unfocused much of the time. We’re often multitasking, visually bombarded with print and video images, and thinking of the next thing we have to do – not what’s in front of us. I think that we might be worse at handling emergencies now than we were in the past, when it was easier to see if something seemed out of place, easier to hear if someone cried out.

Sunday, September 30, 2007

Hat Trouble

Years ago, I was invited to observe a craniotomy. I was writing a patient education booklet about brain aneurysms at the time, and one of the doctors I had worked with extended the invitation to the medical illustrator, who was busy and passed it on to me. I was curious to see it, but I had never observed any surgeries before, and thought a craniotomy would not be a good place for a former English major to start. I had visions of fainting as the surgeon cut and peeled the skin back to reach the patient’s skull, knocking over trays of instruments with such a clatter that the surgeon’s hand would slip, with gruesome consequences.

Although I find medicine fascinating, and I’ve been known to page through pictures of diabetic foot ulcers over lunch, I am not now nor will probably ever be a clinician. I know that hands-on experience is completely different from book knowledge and PubMed articles. Since I write about medicine, though, when my husband took a business trip to Boston he brought back a Harvard Medical School baseball cap from the Coop in Harvard Square.

I’m a hat person who constantly loses hats, and I wear that hat because often I can’t find any other hats to wear as I rush out the door. Besides, the quality is quite good: cloth with a metal buckle to adjust it, rather than a cheap plastic fastener. But I knew the hat might have some unwanted consequences. I have been asked by other Moms at various playgrounds whether I went to “HMS” (to which I replied “what?” the first time someone asked). One Mom turned away in a huff when I said no.

My greatest concern about the hat is that some day I might be wearing it at a playground when a child falls and is critically injured. As the parents swarmed around to help, a Mom or Dad might turn to me and say, “You! Harvard doctor! Save this child!” I know first aid and CPR, but beyond that (ideally before I needed these skills) I would call in the professionals. Perhaps if a child is injured and a parent calls out for help, the first thing I should do is staunch the wound with my hat as I elevate it above heart level, so no one can see what it says and expect miracles.

Thursday, September 13, 2007

Lessons from Cesarean Section Rates

Evidence-based (data-driven) medicine, or EBM, is gaining momentum as an antidote to the perils of of groupthink in medicine. Just because something has "always been done this way" doesn't mean it is right; EBM argues that research data should better inform how medicine is practiced day-to-day.

It's interesting to apply EBM principles to cesarean surgery rates in this country. Far more women deliver by cesarean section now than in the past. Why? Some researchers, such as Dr. Frederic Frigoletto, Jr. at Harvard Medical School, argue that the increased rate is primarily due to complications caused by increased obesity rates and advanced maternal age. Some women also choose elective cesareans in order to control the timing and nature of the birth, he explained in a 2006 WebMD article.

Although cesarean rates have increased across the country, not every area has the same rate. Rates are generally higher in more conservative areas of the country and lower in more liberal areas. A study of California cesarean rates presented at a health policy meeting in 2000 found that the cesarean rate was up to 2.5 times higher in some regions of the state than in others. These facts have made cesarean rates a political and feminist issue as well as a medical one.

Cesarean sections are also extremely profitable for hospitals. The California study noted that cesareans are more common among for-profit hospitals than not-for-profit and teaching hospitals, which suggests a profit motive behind the surgeries as well.

On the other hand, are obesity rates (and/or maternal age) simply higher than average in some areas, potentially leading to a local increase in medically-necessary cesarean sections? If this is true, does a hospital with high cesarean rates have an ethical obligation to put some of these surgical revenues toward programs to decrease the obesity rates in its community? (Trying to decrease maternal age in a community is a thornier issue, I think). And how would this ethical obligation undermine a hospital's bottom line? A decrease in cesareans, after all, means a decrease in revenue.

Medical data is a starting point for these discussions, not an end point. All data needs some context. It's good to remember this as the presidential elections approach and the candidates try to summarize their views on the health care system into marketable sound bites. A few sentences, or a single anecdote, rarely tell the whole story.

Thursday, August 30, 2007

Uninsured Rates Creeping Up

Earlier this week, the U.S. Census Bureau released the latest statistics on income, poverty, and health insurance coverage (gathered in 2006). The message: more people had health insurance in 2005 than in 2006.

Although the poverty rate fell .3% from 2005 to 2006, the number of people without health care coverage increased .5% to 47 million in 2006. This may be due to a decline in employment-based health insurance, the type of coverage that most Americans have. The number of people receiving employment-based health insurance fell .5% from 2005 to 2006, while the number receiving government health insurance, such as Medicare and CHAMPVA, fell .3%.

Children and certain minorities are especially likely to be uninsured. The number of uninsured children increased 9%, from 8 million to 8.7 million, between 2005 and 2006. Among the entire population, Hispanics are most likely to be uninsured (34.1%), followed by American Indians/Alaska Natives (31.4%), Native Hawaiians/Other Pacific Islanders (21.7%) and African-Americans (20.5%).

Mark Twain famously wrote that "there are three kinds of lies: lies, damned lies, and statistics" (inaccurately attributing Disraeli as the source of the quote), so these statistics need some context. The Census Bureau notes, for example, that they surveyed previously unrepresented populations in 2006, including prison and college dorm residents, which could skew comparisons between 2005 and 2006 data.

Still, I think that children, the middle class, and the largest minority group in the country (Hispanics), among others, deserve some better health care options. A pediatric ER doctor told me recently that there is a tacit understanding between parents and ER physicians that the ER has, by necessity, replaced primary care for uninsured pediatric patients. These parents know that many of their visits are not medical emergencies, and the physicians understand that the parents have no other option for health care. That is what health care has become for many people: these silent bargains and unspoken apologies.

Monday, July 30, 2007

From the Civil War to Star Wars: A Brief History of EMS in the United States

I've been writing about EMTs (emergency medical technicians) for a while, and, by extension, fire fighters (who are increasingly required to have some level of EMT training) . All of this medical training falls under prehospital care - emergency medical services (EMS) provided before a patient enters the hospital, either at the site of the illness or injury or during transport to a hospital. EMTs range from first responders to paramedics, who have the most medical training (measured in hours of classroom and clinical training and equipment/techniques used).

Prehospital care is a structured and fairly militaristic culture, with both the camaraderie and tensions of long shifts, and sudden exposure to trauma. EMTs never know exactly what they will encounter each day when they go out on calls, from a simple transport that didn't even require an ambulance to a wrenching pediatric emergency.

Modern EMS, in fact, has military origins, since it arose as a way to manage injured soldiers. During the Civil War, wounded soldiers often languished for days on the battlefield before they were treated, according to a fascinating Elsevier publication on the history of EMS. In 1862, General Jonathan Letterman, a Union surgeon for the Army, implemented a formal system to treat wounded soldiers and transport them quickly to field hospitals. His ideas for improved medical treatment were based on those of a Baron who grappled with the same problems during the French Revolution. In many ways, Letterman is the father EMS in the United States.

Fast-forward about 100 years to the Highway Safety Act and the creation of the U.S. Department of Transportation (DOT) in 1966. The DOT standardized EMT training, and in 1970 Ronald Reagan, then the governor of California, signed an influential law giving paramedics more legal rights to provide advanced treatments to patients.

And then there was Hollywood. Many EMTs were influenced by, or are interested in, the TV series Emergency!, an NBC drama about Los Angeles paramedics that ran from 1972 to 1977. Emergency! was not only extremely popular, but it also helped lead to landmark legislation, the EMS Act of 1973 (Public Law 93-154). Spearheaded by Senator Alan Cranston (D-CA), the law improved funding for paramedic training in the United States (federal support for EMS has decreased since the 1980s, however).

And Star Wars? The Army founded a hospital in San Francisco's Presidio in the 1890s to treat the great numbers of soldiers going the Philippines (and often treating returning soldiers who had contracted complicated tropical diseases there). This hospital was renamed the [Jonathan] Letterman Army Medical Center in 1911. In 1994, the Army turned over the Presidio to the Golden Gate National Recreation Area. The hospital was eventually torn down and George Lucas, of Star Wars fame, of course, built the new Letterman Digital Arts Center there.

Saturday, July 7, 2007

The Poinsettia Thief

My youngest child was born in December, narrowly missing both Pearl Harbor Day (an inauspicious birthday) and a nurses' strike and subsequent lockout at my local hospital. To celebrate the holiday season, the lobby of the hospital was full of potted red poinsettias, their pots wrapped in colorful foil.

My recovery room in the maternity ward was across from the nurse's station, which was convenient as a patient but not conducive to getting much sleep. The nurses (who were great, by the way) were a chatty and jovial bunch, post-strike and lockout and pre-holiday. One nurse had a birthday that night, so they belted out "Happy Birthday" to her at some pre-dawn hour of the morning. In far more hushed tones, however, they also talked about The Thief.

Earlier in the evening, a new father had arrived at the hospital to see his wife. As he walked through the lobby, he stopped to pick up one of the poinsettias to bring to his wife as a gift. A hospital staff member saw the man take the plant and called security, who followed the man up to the maternity ward and stopped him.

The father claimed that he thought the plants were free. That's a weak excuse, but I guess he had to say something. Would he help himself to the holiday decorations at his workplace or at a mall? More to the point, would a cash-strapped hospital, fresh from battling the nurses' union, give away free plants in its lobby?

Is a poinsettia even a wise gift for a mother and infant, since the infant soon will start gnawing everything in sight once teething sets in? (Poinsettias are not poisonous, but their sap can irritate the skin.) Maybe the father thought that it was better to visit his wife red-handed than empty-handed.

Friday, July 6, 2007

Roller Coasters and Otolaryngologists

How does an otolaryngologist (an ear, nose, and throat specialist) relax after a long day? On a roller coaster, apparently. I heard this story from an otolaryngologist, and it's either a fact or a clever piece of fiction that a group of otolaryngologists travel the country together to ride roller coasters in their free time.

I have to laugh when I imagine the group stumbling, dizzy, off the latest ride at Great America. Dizziness is a top reason that patients visit their primary care physicians, and some of these cases are referred to otolaryngologists, who treat inner ear problems. The inner ear helps regulate balance in the body.

A wide range of fairly benign problems can trigger dizziness, such as an inner ear infection, a drug interaction, or anxiety. More serious problems such as Meniere's disease (vertigo caused by the fluid imbalance in the inner ear), brain tumors, and multiple sclerosis can also cause dizziness.

Are the roller-coaster otolaryngologists simply so fascinated by the workings of the inner ear that they seek out sensations that are partially regulated by the inner ear? Do they think about their patients as the roller coaster spins them around another loop-de-loop? Or is the irony of the situation part of the fun for them?

Sunday, June 24, 2007

What is MedFly?

MedFly is a fly on the wall of medicine - exploring the quirky and little-known stories from the field of medicine.