Parents and Infant Swim Lessons

A recent article in the San Francisco Chronicle on infant swimming shined a light on the psychology of parents in the Bay Area. The article discussed the American Academy of Pediatrics' official policy statement on infant swimming programs, in light of a local and nationwide boom in these programs. The AAP argues that children are not developmentally or cognitively ready to swim safely until they are four or older, and learning to swim earlier may give parents a false sense of security.

Despite these warnings, the popular and expensive La Petite Baleen program in the Bay Area, which often boasts a waitlist to get into classes, begins training children to be submerged in the water when they are just two months old. A new La Petite Baleen site is slated to open in June in the Presidio in San Francisco, and there are already 1,000 children enrolled, the article stated.

New parents are marketed to relentlessly. I still remember the box of formula that the postman shoved through my gate when I was pregnant with my first child (a product that I didn't want or need), and the mailings I received from Gerber and other companies who knew my due date, probably because my doctor's office had sold them the information. I heard a constant drumbeat of advice and buying information as a new parent, some of it from valid sources and some not.

I succumbed to the marketing as well, I think. Did I buy a Britax car seat and a Hanna Andersson jacket for my daughter because they were the best items on the market, or because being able to afford these things was a marker of my social class as a parent? I probably made these purchases for both reasons. Similarly, I think that the popularity of infant swim classes also has an element of status in it.

Are parents enrolling their young children in La Petite Baleen classes because they think that the AAP is wrong and swim lessons are good for infants and toddlers? Perhaps. Equally compelling, I think, is the social status that attending the school confers to the parents, which trumps anything the AAP says.

Art and Medicine

Since the American Academy of Orthopaedic Surgeons (AAOS) is celebrating its 75^th anniversary this year, the AAOS had a special display of art by patients and surgeons at its annual conference earlier this month in San Francisco. I first noticed the exhibit, called eMotion Pictures: An Exhibition of Orthopaedics in Art, as I was hurrying into Moscone West to catch a session I was covering on the third floor.

In the press room, I picked up a book the AAOS had put together describing the artwork, and I paged through it in my few quiet moments. By the end of the week, I had passed by the large bridge-shaped sculpture “Bone Rainbow” many times, although I did not initially notice that the bridge’s crossbars were made of bronze femurs. The artist, Ruth Cozen Snyder, had been injured in a car accident, and said in her artist’s statement that creating art had helped her cope with and recover from her injuries. Much of the patient art I saw and read about tried to make sense of, and rise above, the pain and disability that many patients faced.

My favorite piece was a painting by an orthopoaedic surgeon, called “Nothing About You Without You.” In the painting, a patient with a cast on his right foot and a sombrero hiding his face straddles a chair next to a vivid orange wall, the colors and clothing reminiscent of Central or South America. I was struck by the description of the work by the artist, S. Terry Canale, MD, who said that “with an increasingly diverse patient population, [orthopaedic surgeons] need to become more culturally competent, treating patients of all cultures with respect and practicing patient-centered care.”

The Journal of the American Medical Association always features artwork on its cover, as an antidote perhaps to the technical articles inside. At the AAOS conference, it was refreshing to see such striking artwork as I ducked in and out of PowerPoint presentations featuring sutured knees, diseased hips, and MRSA infection statistics. It was a reminder that there are human beings on either side of the scalpel.

Health Care Reform's Impact on Business

I think that the health care system will be fixed gradually with the next administration. Perhaps the new president will kick-start health care reform with an action designed to build goodwill toward the process, such as an announcement of federally-subsidized catastrophic coverage or medical debt forgiveness for a small segment of Americans, and build out slowly from that.

If employers no longer need to purchase private health insurance for employees, they might need to pay into a local, state, or national health care plan fund. If the plan (either government-based or private) is structured and administered well, with a reasonable level of services for patients and reasonable reimbursement rates for providers, it can provide better care at a lower cost than the patchwork of plans currently available. The debate about the cost of such a plan is raging in San Francisco now, though, with the city mandating employers to pay into a fund that would cover uninsured adults. The Golden Gate Restaurant Association fought the plan, claiming the mandated costs are higher than restaurant owners can afford.

If employer-provided health care is decreased or goes away completely, I think that there will be some unintended consequences for large companies in particular. Many people hold on to jobs they don't like at larger employers solely for the access they provide to quality health insurance. If other affordable, high-quality options become available, I think that these employees will leave their employers. Some will move to work in different fields, but others will move to competing companies, or start their own businesses to compete with their former employer.

According to the White House, small businesses are the engine of job creation in this economy, providing two out of every three new jobs, although the nonpartisan National Bureau of Economic Research questions these rosy statistics. Small businesses freed from the burden of taking on large health care costs once they reach a certain size, however, are likely to grow rapidly. As some larger businesses lose employees and smaller businesses gain them, will the revenue gap between the two types of businesses decrease? Will that change ultimately decrease the gap between rich and poor, and shore up the middle class again?

ABC, the AAP, and Autism

I've been thinking a lot about the American Academy of Pediatrics’ recent protests of the January 31 pilot episode of the ABC television show “Eli Stone.” In the lawyer drama, a mother receives a $5.2 million settlement after she charges that the mercury-laden preservative thimerosol that was used in a vaccine caused her child’s autism. Since many children are diagnosed with autism around the time that they receive a number of vaccinations, some people have linked these vaccinations with autism, especially the MMR (measles, mumps, and rubella) vaccination.

A small but influential 1998 study suggesting a link between thimerosol and autism was later retracted by its authors, and researchers have since found no link between vaccinations and autism. Furthermore, thimerosol was dropped as a preservative in standard vaccines in the U.S. in 2001.

Some parents still refuse vaccinations for their children, though, due to concerns about vaccine contents and the possibility of rare complications. Their choices have lead to regional, sometimes fatal outbreaks of measles and whooping cough (pertussis) among unvaccinated children. Right now, for example, there is a measles outbreak in San Diego, with ten unvaccinated children and infants infected and over fifty quarantined.

The AAP only fueled the vaccination debate, however, with an emotional press release in late January, calling the “Eli Stone” pilot “the height of reckless irresponsibility.” In the letter, AAP President Dr. Renee R. Jenkins says that “if parents watch this program and choose to deny their children immunizations, ABC will share in the responsibility for the suffering and deaths that occur as a result. The consequences of a decline in immunization rates could be devastating to the health of our nation’s children.” The AAP went on to authorize the early release of a February Pediatrics journal article showing that infants expel the type of mercury used in thimerosol over ten times faster than they expel the type of mercury often found in fish. Some researchers believe that if heavy metals such as mercury build up in the body, they might cause autism.

But what this debate really comes down to is parents’ fear of autism, a fear that is especially acute in the San Francisco Bay Area where I live. A CDC study released in 2007 that looked at autism spectrum disorders in selected regions of the country found an average rate of autism of about 1 in every 150 eight-year-old children. Earlier estimates had suggested autism was much less prevalent, as low as 1 in 500 children. The CDC pointed out that it’s unclear whether the autism rates are increasing over time, or whether it is simply being diagnosed and reported more accurately.

Still, no one knows what causes autism, and a quick glance at the numbers makes it look like an epidemic. When I had my first child, I, too, was told by well-meaning acquaintances that mercury-laden vaccinations might cause autism, one of a long list of things to panic about as a sleep-deprived new Mom. If I had my child vaccinated and she developed autism soon thereafter, would it be my fault if the light in her mind dimmed? Was I willing to take that chance?

By the time my children were born, though, thimerosol had been pulled from the vaccines, and pertussis was making an alarming comeback in San Francisco among unvaccinated infants and adults whose pertussis vaccinations had worn off. My children were vaccinated.

There is a frightening childhood illness for every generation, it seems. At one time it was polio, until Jonas Salk developed an effective vaccine for it in the 1950s. My great aunt had polio as a young woman (luckily she recovered fully). My mother, who grew up in the Bay Area, remembers driving by San Francisco’s Shriner’s Children’s Hospital on 19^th Avenue with her family, where many of the young polio patients were dependent on iron lung machines, wondering if that would happen to her. Today, the old Shriner’s Hospital is a retirement community next to a row of modern townhouses, and thanks to the vaccine polio is almost completely eradicated worldwide.

Big Bucks and Orphan Drugs

I had the opportunity a while ago to cover a pharmaceutical company’s drug development meeting. The meeting took place at a lovely and incredibly expensive hotel, and the salmon and petit fours for lunch were a far cry from my usual refrigerator-browsing when I work at home. I knew that the pharmaceutical industry was exceedingly wealthy, but I hadn’t seen it up close before.

The people at the meeting included deferential twenty-something sales representatives and assistants; opinionated mid-career researchers and doctors, who occasionally cracked incomprehensible jokes involving biochemical formulas; and a polite and self-deprecating high-level executive. I’m sure there were plenty of office politics and power plays behind the scenes, but as an observer what I saw was a well-oiled machine. The real politics were external: a corporation versus the FDA (“the Agency,” they called it). The pharmaceutical company was starting human trials of a new drug that they hoped to bring to market if all went well.

For all the people at the meeting, and the expense and effort of bringing everyone together (many from out of town), the new drug was not a potential blockbuster. It was an orphan drug. Orphan drugs are developed to treat rare (orphan) diseases, defined as: diseases that affect 200,000 or fewer Americans, and/or diseases that are uncommon in the developed world (although they may be common elsewhere).

In the past, orphan drugs were too unprofitable for pharmaceutical companies to develop. In 1983, however, the federal government passed the Orphan Drug Act (ODA) to provide tax incentives, research grant money, and marketing benefits to companies that develop orphan drugs. The ODA has had a huge impact on orphan drug development. According to the FDA, from 1973 to 1983, about one orphan drug was brought to market per year. Since 1983, about 250 orphan drugs and products have been brought to market – averaging about ten each year.

The drug in question at the pharmaceutical meeting was designed to replace the current drug treatment, which has several miserable side effects that inhibit patient compliance, for a disease so rare that there might be more people involved in developing and regulating this new drug than there are potential patients for it. But if it survives the trials and the FDA and is brought to market, the drug could vastly improve the quality of life of these patients. It was good to see such altruism from a pharmaceutical company, even if it was prompted by a big carrot from the federal government.

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?