Killing Us Softly (15 page)

For Singer, acceptance of her daughter's disorder came slowly. “I was convinced that I was never going to be happy again until Jodie was cured. And I believed with all of my soul that it was just a matter of finding the right cure and then she was going to be fine. And then we would all be fine. And slowly I came to realize that it's a developmental disorder and that she's going to have challenges her entire life. When she was born, I looked into her beautiful little eyes and thought about her future and all the things we were going to do and all the joy we were going to have. But our lives have been very different. And it took a long time until I accepted that and was able to go back to thinking with my brain. That's when I finally sought out science-based interventions instead of quackery.”

Singer doesn't blame parents. “I think the culpability lies with the quacks who are preying on the desperation of families. I think that's the worst kind of person who would take advantage of a parent or child during a time when they're grieving. I don't blame parents for being susceptible to this. I don't blame them for wanting to believe. You just can't imagine that there is someone who wants to take advantage of you.”

I
n the 1995 movie
The American President
, Lewis Rothschild pleads with President Andrew Shepherd to counter the attacks of his rival, Bob Rumson. Rothschild is angry that Rumson is the only one offering answers to America's problems.

S
HEPHERD
: Look, if people want to listen to [Rumson] …

R
OTHSCHILD
: They don't have a choice! Bob Rumson is the only one doing the talking! People want leadership, Mr. President, and in the absence of genuine leadership, they'll listen to anyone who steps up to the microphone. They want leadership. They're so thirsty for it they'll crawl through the desert toward a mirage, and when they discover there's no water, they'll drink the sand.

S
HEPHERD
: Lewis, we've had presidents who were beloved who couldn't find a coherent sentence with two hands and a flashlight. People don't drink the sand because they're thirsty. They drink the sand because they don't know the difference.

Alternative healers who promote secretin or spinal manipulations or hyperbaric oxygen chambers or ion-rearranging
machines to treat autism are selling sand. They do it because of a misguided belief that their therapies work; they do it because it's lucrative; they do it because responsible advocacy organizations haven't stepped forward; and they do it because some parents don't know—or prefer not to know—the difference. Nothing is more contemptible than a clinician who takes advantage of loving parents by raiding their life savings.

F
or children with diseases like diabetes, bacterial meningitis, and lymphoma, medicine offers cures like insulin, antibiotics, and chemotherapy. Not so with autism. McCarthy's treatments are seductive, in part, because medicine offers so little. (In her books, McCarthy promotes 260 chiropractors, naturopaths, dentists, doctors, and nurses who sell autism cures.) But the problem with McCarthy's campaign isn't only that her therapies don't work; it's that they might do harm. Children have died from medicines that bind heavy metals or suffered perforated eardrums in hyperbaric oxygen chambers or bone thinning from casein-free diets. Perhaps worst of all are the children who have suffered from McCarthy's very public denouncement of vaccines.

Before vaccines, Americans could expect that every year diphtheria would kill fifteen thousand people, mostly young children; rubella (German measles) would cause as many as twenty thousand babies to be born blind, deaf, or mentally disabled; polio would permanently paralyze fifteen thousand children and kill a thousand; mumps would be a common cause of deafness; and a bacterium called
Haemophilus influenzae
type b (Hib) would cause hundreds of children to die of suffocation
from epiglottitis—no different than being smothered by a pillow. In the developed world, vaccines have completely or virtually eliminated these diseases.

Although acupuncturists, chiropractors, naturopaths, and homeopaths all come from different places in history—and offer therapies based on different philosophies—the one place they all seem to come together is vaccines, which they uniformly disdain. It's hard to know why. Maybe it's because it distinguishes them from their competition (mainstream doctors). Or maybe it's because they think vaccines are unnatural (although it's hard to make a case that coffee enemas are natural). Or maybe it's all part of the countercultural playbook (you're either on the bus or off the bus). Whatever the reason, it's done a lot of harm. And although most alternative healers don't have much national appeal, Oprah does. And when Oprah gave credence to McCarthy's anti-vaccine message, it had an effect. During the past few years, Americans have witnessed an increase in hospitalizations and deaths from diseases like whooping cough, measles, mumps, and bacterial meningitis, because some parents have become more frightened by vaccines than by the diseases they prevent.

It is absurd that the administration of a modern state should be left to men ignorant of science.

—Frederick Soddy, British chemist

M
ovie and television stars aren't the only celebrities offering medical advice. Politicians have also weighed in.

On February 11, 2009, Lawrence Gostin and John Kraemer, law professors at Georgetown University, published a paper in the
Journal of the American Medical Association
. Typically,
JAMA
publishes papers written by doctors and scientists, not lawyers. But this was an unusual case. “Medical science,” they wrote, “and the health of patients who depend on it, are too important to be subjected to political ideologies.” Gostin and Kraemer were referring to the inexplicable actions of Richard Blumenthal, attorney general of
Connecticut. Blumenthal had tried to bully a medical society into creating a disease.

It wasn't the first time a politician had politicized science.

I
n 1977, Dan Burton, a Republican congressman from Indiana, stood proudly on the steps of the state capitol to announce that Indiana citizens should ignore FDA warnings and use laetrile as they pleased. Ten years later, Burton disagreed with the FDA again, this time for banning ephedra, a weight-loss product that had caused psychosis, hallucinations, paranoia, depression, irregular heartbeats, and strokes in hundreds of people. One, a thirty-four-year-old man who had taken ephedra for ten days, had jumped out of a second-story window to escape imagined attackers. Another, Steve Bechler, a pitcher for the Baltimore Orioles, had died less than twenty-four hours after taking the drug. But Burton was adamant. He accused the FDA of “harboring a culture of intimidation and sometimes harassment against alternative cures.”

Burton's ignorance wasn't limited to cancer and weight control. When AIDS began spreading across the United States in the 1980s, he became obsessed with the disease, bringing his own scissors to the barbershop and refusing to eat soup in restaurants because he was unsure who was preparing his food. Later, he introduced (unsuccessful) legislation mandating HIV testing for every American.

But Dan Burton's greatest contribution to the science of the absurd came in the early 2000s, when he sponsored a series of congressional hearings that offered a platform to Andrew Wakefield, a British surgeon who had claimed that the
measles-mumps-rubella vaccine caused autism. Wakefield's star didn't shine long. First, study after study failed to confirm his theory. Then a British journalist named Brian Deer found that Wakefield had received £440,000 from a legal services commission (a conflict of interest Wakefield had neglected to mention to his co-authors) and that some of his clinical and biological data had been questioned (causing the journal to retract the paper). Eventually, Andrew Wakefield was struck off the medical register in the United Kingdom—no longer able to practice medicine. But during Wakefield's fall, Burton never relented, continuing his public assault on MMR. As a consequence, parents of more than a hundred thousand American children chose not to give the vaccine. The results were predictable. In 2008, measles outbreaks were greater than in any year in more than a decade. In Europe, where Wakefield's claims stoked similar fears, thousands of children were infected, and at least thirteen died from measles, a preventable illness.

Incidentally, Burton was carrying on a time-honored Indiana tradition of trying to legislate bad science. On January 18, 1897, Indiana state representative Taylor I. Record argued in favor of changing the value of
pi
.
Pi,
which can be rounded to 3.14159, is the ratio of a circle's circumference to its diameter. Tyler believed that the number was inconveniently long; in House Bill 246, he asked that it be rounded up to 3.2. The bill passed the House but was defeated in the Senate when the chairman of Purdue University's math department successfully pleaded that it would make Indiana a national laughingstock. The value of
pi
in Indiana remains the same as in every other state.

B
ut it was Attorney General Richard Blumenthal who took political shenanigans to a new level. Blumenthal tried to legislate a disease, Chronic Lyme, into existence.

In November 1975, Polly Murray, a mother of four living in Old Lyme, Connecticut, called the state health department to report twelve children who had suddenly suffered swelling, redness, and tenderness in their joints (arthritis). All lived in her small community of five thousand people, four on the same road. The doctors said it was juvenile rheumatoid arthritis (JRA), an autoimmune disease caused by the body's reacting against itself. To Polly Murray, this didn't make sense: how could an autoimmune disease cause an outbreak?

Polly wasn't alone. Later, another mother from the same community called the Yale rheumatology clinic to report that she, her husband, two of her children, and several neighbors had suddenly developed arthritis. Again, all were said to have JRA.

The task of deciphering the events in Old Lyme fell to a young postdoctoral fellow in Yale School of Medicine's rheumatology division, Allen Steere. Steere studied fifty-one victims of the disease—thirty-nine of whom were children. He agreed with Polly Murray: not in keeping with JRA, these cases were seasonal, involved only one joint, were associated with an unusual rash, and occurred in an unlikely number of people in one town in one summer, 10 percent of whom lived on one of four roads. Given the prevalence of JRA in the United States, the chance of that happening was 100 to 1.

In January 1977, Steere and his coworkers published a paper that gave the disease its name: “Lyme Arthritis.” Steere didn't know what was causing the disease, but he had a sense of how it was transmitted: “The geographical clustering of the patients in more sparsely settled, heavily wooded areas rather than in town centers or along the shore [and] the peak occurrence in summer months are best explained by transmission of an agent by an arthropod vector.” The most common arthropods in the woods of Old Lyme are ticks, fleas, spiders, and mosquitoes.

Five years later, a bacteriologist named Willy Burgdorfer figured out what was happening in Old Lyme, Connecticut. Burgdorfer had studied in Basel, Switzerland, before coming to Hamilton, Montana, to work at the Rocky Mountain Laboratories, part of the United States Public Health Service. The Rocky Mountains are loaded with the same arthropod that would prove to be the cause of the Old Lyme outbreak: ticks. In 1982, Burgdorfer dissected the guts of
Ixodes
ticks and found corkscrew-like bacteria similar to those that caused syphilis. When Burgdorfer injected these bacteria into rabbits, they developed a rash identical to that found in Old Lyme. The bacteria were later called
Borrelia burgdorferi
.

W
ith the bacteria that caused Lyme arthritis in hand, understanding the disease got a lot easier. Researchers could now develop methods to detect bacterial proteins and genes, enabling them to tell where the bacterium went, when it went there, how the body responded, and whether antibiotics worked. Within a few years it became clear what Lyme disease was. And what it wasn't.

Lyme disease occurs in three stages. First, ticks inject bacteria under the skin, where they reproduce and move outward, causing the characteristic bull's-eye rash: red, with heaped-up borders and central clearing. This first stage lasts days to weeks.

During the second stage, Lyme bacteria spread into the bloodstream and travel to other parts of the body. Patients might experience fatigue, fever, swelling of lymph nodes, more bull's-eye rashes, and neck, muscle, and joint pain (arthralgia). In about 15 percent of patients, the bacteria cause meningitis (inflammation of the lining of the brain and spinal cord) with neck stiffness and fever; encephalitis (inflammation of the brain itself) with headache and intolerance to light; facial palsy (also called Bell's palsy), in which one side of the face droops uncontrollably; and neuritis (inflammation of the nerves), causing pain, weakness, and numbness. In about 5 percent of patients, bacteria cause carditis (inflammation of the heart), disrupting electrical pathways necessary for normal heart rhythms; symptoms include fainting and chest pain. Interestingly, even without antibiotics, all of these symptoms usually resolve.

During the third stage, which occurs months after the tick bite, about 10 percent of untreated patients develop arthritis, mostly in large joints like the knee. In some untreated patients, arthritis persists or recurs.

When Allen Steere reported the outbreak in Old Lyme, he predicted that antibiotics wouldn't make a difference, impressed as he was that symptoms often disappeared without them. But Steere was wrong. Many studies have now proved that people treated with antibiotics resolve their symptoms more quickly and, if treated early, are less likely to progress to later stages. As
a consequence, antibiotics are given by mouth or intravenously for two to four weeks.