Don't Kill the Birthday Girl (25 page)

With the same purpose, some allergy patients have been experimentally treated with the anti-IgE monoclonal antibody omalizumab (known by its trade name, Xolair). Xolair is usually given to those with persistent and life-threatening asthma that has proven resistant even to high dosages of corticosteroids. But the cost of this drug, which was developed using recombinant DNA technology and appears to require a lifelong course of treatment, is exceptionally high—ten to thirty thousand dollars per year—not to mention that its long-term effects are unknown.

I remember going to my doctor years ago, when my mother had heard about “anti-IgE medicine” on the news. She'd wondered if it was something I should pursue.

“The thing is, your body is
supposed
to release IgE in response to a lot of things,” my skeptical HMO internist told me. “Think of those treatments as a broadsword. What you need is a scalpel.” One of the advantages of Chinese herbs over Xolair, besides cost, is their record of use in folk medicine. We have the reassurance that generations have ingested them without causing internal catastrophe.

Would I try the Chinese herbal treatment, if and when the pills are in general circulation? I don't know. When I will later mention it to my mother, upon return to D.C., she will bristle instinctively against the risk. “You couldn't try
all
nine herbs at
once,” she will caution. “What if you react to any one of them the same way you do to mustard?”

The panel wrapped up, and I hung back as reporters swarmed the three doctors. Though I wanted to talk to them, I wasn't sure what I had to say anymore. I wanted to applaud their research, yet I kept thinking about the high stakes and low yield of these therapy techniques. I tried to wrap my head around how many cycles of testing, peer review, and government approval would have to take place before the general food-allergic population sees OIT as an option in their local allergist's office. From a reporter's perspective, solving the problems of one allergic kid heralds “a cure.” From a patient's perspective, our success stories are just beginning to be counted in the double digits, out of the millions affected.

Part of what hinders research is that few people want to volunteer their kids as guinea pigs. We're early enough in the allergic-population boom that there are not that many peanut-allergic adults available for testing yet, though that may change in a decade. Besides, when trying to fight a disease that can present differently (and more severely) in childhood, adult subjects alone are not an effective predictor of treatment potentials.

There are some experiments where animal subjects are useful. Standard laboratory mice have been made “allergic” to peanuts and egg by feeding the mice with a combination of allergen protein and enterotoxin. An enterotoxin is a toxin associated with gastrointestinal distress—such as staphylococcal enterotoxin B, which is linked to food poisoning, or the cholera toxin. The mice's resulting immunological response resembles that of an allergic reaction, because they increase production
of white blood cells related to mediating airway inflammation. There appears to be an enduring allergic sensitization.

Then what?
You
try placing a droplet under that little mouse's tongue, much less ask Stuart Little if his throat itches. Let's face it: in a field where self-reporting of symptoms is critical, there's only so much you can do with a mouse.

A parent's decision to enter his or her child in a clinical trial has to weigh many factors. For some families there is a financial incentive—an opportunity to have scratch tests and RAST tests performed for free, not to mention the potential benefits of the experimental treatment. For most, it comes down to where they balance on the seesaw between optimism and frustration.

Riding down the escalator of the convention center, I overheard two allergists commiserating over their lack of experimental samples.

“We needed soy. But soy is impossible to get.”

“I wish I'd known! I had a dozen soy, then sent them on out to California. Are you looking for egg?”

How odd to be spoken of not as a person but as a vial of allergic blood. I am
Soy
. I am
Egg, Cow's Milk, Tree Nut
. A few soft approaches were made to my parents, when I was young, suggesting that we might take part in the studies being mounted at Johns Hopkins, just an hour up Route 95. We shrugged it off. I'm not a good donor; my veins are hard to find, easily bruised. I didn't want to spend my summer as a lab rat.

Now part of me wanted to lean forward, tap one of those doctors on the shoulder, and offer up my arm for the draw. Which would have been, to use professional parlance, “a really freaky thing to do.” So I did nothing.

Later that night, back in the hotel room, I pored over the materials I had picked up during the day. In the Fall/Winter 2009 issue for a newsletter called
Support Net
, I found an article by journalist Beth Puliti that profiled the experiences of three mothers whose children agreed to take part in experimental studies.

Puliti wrote about one parent, Joy Hogge, Ph.D., who hoped her nine-year-old son might build up a tolerance to peanuts. But in the double-blind study, his dose of applesauce mixed with powdered substance (peanut, though the “blind” doctors didn't know that) resulted in an anaphylactic reaction that raged through a shot of epinephrine, several Benadryl, three days' worth of steroids, and an oxygen mask.

Hogge was amazed when, one month later, he agreed to a second attempt at desensitization. Several weeks into treatment, his threshold had hit a plateau of 12 milligrams. He struggled with stomachaches, itchy throat, and asthma-like attacks.

“These symptoms, along with his memories of the challenge and the fact that he learned he hated the taste of peanut, were very hard for him,” Hogge told Puliti. “He decided to discontinue the study.”

I put aside the article to reread it more thoroughly once I was back at home. Later, it clicks: Arkansas. The trial's only identifier is its location, Arkansas Children's Hospital in Little Rock.

At the press panel, we had all been inspired by hearing about the twenty-three children who were taking part in the oral immunotherapy treatment for peanut administered by Duke and … the University of Arkansas for Medical Sciences, which partners with ACH. Fifteen children who had received OIT
treatment all along (eight had received placebo) had already experienced increased desensitization, the ability to eat those precious fifteen peanuts without reaction. But looking at the parameters of the abstract, I realize that
twenty-nine
subjects were originally enrolled. Six did not make it to the oral food challenge stage. Had Hogge's son been among the six?

There must have been a moment when the doctors running the trial said, among themselves, “This kid is not going to be desensitized.” Then they may very well have said to the mother, “It's up to your family.” And perhaps she had said to her son, “It's up to you.”

I'd thought that parsing out these gaps between what is said and what is believed would be revealing, even strategic. But the gaps are simply a matter of human nature. These doctors are as hopeful as they can be and as helpful as they can be, but at the end of the day, they're human. It's a big relief. And frightening.

•  •  •

On my last day at the AAAAI conference, I walked through the exhibit hall. Laboratories, professional societies, advocacy groups, medical supply companies, and niche start-ups all jostled for the attention of the crowd. There wasn't much of a crowd to be jostled for—more a scattering of people here and there. With tightrope precision I stayed to the center of each aisle, to avoid outstretched hands offering brochure after brochure. Paper is the enemy of trying to travel with only a carry-on bag.

Occasionally a free sample would lure me to a vendor's table. I picked up a couple of packets of SunButter, a salty, oozy,
oddly tasty spread made from sunflower seeds. If there can be a plus side to an epidemic, it might be the profusion of “butters” produced in the wake of peanut allergies.

I said hello to the folks from FAAN. I left a card for the people from the Food Allergy Initiative. I talked for a while to the woman who founded Kids With Food Allergies, which publishes the
Support Net
newsletter. Kids With Food Allergies is a Pennsylvania nonprofit that focuses on creating a network where families can share tips for coping with allergic conditions. We got on the subject of birthday cakes, and she told me that some parents are forgoing food-based treats entirely. Instead, the cakes were made of felt, decorated collaboratively by classmates as a gift to the birthday kid.

Each year, the AAAAI conference gives free exhibit space to a particularly deserving and urgent cause. This year's recipient was The Mastocytosis Society, dedicated to serving those with overactive mast cell populations, which means someone who is trapped in the perpetual state of inflammation and edema associated with allergic reactions. The TMS table workers had bright smiles, a pile of flyers, and high-end swag in the form of emblazoned flashlights. None of it did any good. The exhibition room was where people came to wander as they sipped their coffee or had a quick lunch, yet their display could not have been less appetizing. No one wants to stare at an oversized picture of a pustule-covered little girl as he eats a Thai chicken-salad wrap.

Far more popular were the megabooths sponsored by pharmaceutical companies. These booths, which were set off by their own swaths of carpet and stand-alone lighting, featured made-to-order kettle corn, free massages, and robots.
The star of the floor was an electronic creature sponsored by Asthmatx, Inc., as part of the publicity push for Asthmatx's Alair Bronchial Thermoplasty System. Sporting a plastic faux crewcut, yellow-lensed sunglasses, and the name
VASO
on its plastic-polymer clavicle, this eight-foot-tall creature bounced on two independently controlled feet as he took questions and cracked jokes with the audience.

“You think I was born this way?” he bragged, flexing. “I work out.”

The robot's body was paneled in purple and blue, with a torso too slender for an actual person to hide inside. I'd heard about this technology before. Somewhere nearby there had to be an operator, seeing through cameras behind the robot's eyes, hearing through microphones planted where its ears would be, and wearing an exoskeleton of body sensors that translated every move in real time. The robotics industry calls them anthrobots.

Every few minutes,
VASO
would break out in dance in response to a prerecorded sound track. The track, every time, was the Bee Gees' “Stayin' Alive.” No one else seemed to find this an odd choice to promote a breathing medication.

“You lookin' at me?” he asked. “You lookin' at me?”

I had reached my saturation point. Too many slogans. Too many business cards. Backing away from the Alair booth, I began navigating toward the exit.

Before I reached the double doors, another robot caught my eye. It was silver, about six feet tall, with big, blue bug eyes and a butler's posture, vaguely masculine. Its squat, wheeled base evoked Johnny 5 in
Short Circuit
.

I stepped closer, checking for the logo of the robot's sponsor.
Sanofi-aventis U.S., otherwise known as the makers of Allegra. I felt an unexpected surge of pride. I've been on Allegra for years. Claritin, Seldane, Zyrtec—all the other allergy medications used lactose-derivative binders that, after reaching a few weeks of critical mass in my bloodstream, had caused rashes to break out along my forearms. Only Allegra had proven safe. So I'd fought for it, even when several different HMO insurance plans had tried to switch me to generics or substitutes, and paid out of pocket at times. If this was a pennant race, I'd stumbled across the bleachers for my home team.

Should I go over? The robot, which had been making polite conversation with a woman in a navy skirt-suit, pulled a three-point turn to face me. We looked at each other.

“Hi, Sandra,” he said.

I raised my hand in a half wave, confused by this familiarity. Then I remembered I was wearing a name tag. I looked around, sure I'd spot someone speaking into their wrist or lapel. But the voice behind the robot was well camouflaged.

“Hi,” I said.

“Come closer,” he said. “I won't bite.”

I was tempted to step onto Allegra's carpeting. But I was conferenced out, and New Orleans was waiting.

“Next time,” I said.

“I'll miss you,” he replied. The bulbs behind his eyes blinked.

I put my fingers to my lips and blew a kiss to the robot. Then I turned and walked away, away from the convention center, away from the doctors. I did not look back.

CHAPTER TEN

The Nature of Nurture