CHAPTER 6

Ellen Kroft knelt beside her granddaughter and held the girl tightly by her shoulders, trying to force even a moment of eye contact — of connection of any kind.

"Grandma loves you, Lucy," she said, carefully enunciating every word as she would to a three-year-old. "Have a wonderful day at school."

The girl, now nearly eight, contorted her face into something of a grimace, then twisted her neck so that she was looking upward past Ellen, at the sky. Not a word. Nearly five years of expensive schooling at the best special-needs facility around, and there still were almost never any words.

"Lucy Goosey, are you ready for school?"

The teacher of Lucy's small class at the Remlinger Institute in Alexandria, Virginia, was named Gayle. She was in her twenties and new to the school, but she had the youthful exuberance, upbeat demeanor, and saintly patience required for a life of trying to reach and teach severely autistic children. Gayle held out her hand. Lucy's head kept swinging rhythmically from side to side like the switching of a horse's tail. She neither avoided the proffered hand

nor reached for it. Only if it were something spinning, flashing, or brightly colored would she have reacted.

Eight years old.

It had been five years since the diagnosis of profound autism was made on the girl and nearly four since Ellen began bringing her to school so that her daughter, Beth, could get to work.

"Come on, Lucy," Gayle sang, leading her off. "Say good-bye to Grandma."

Say good-bye to Grandma. Ellen laughed to herself sardonically. There had been a time when Lucy Kroft-Garland could do just that. Well, not anymore. She turned and was opening the door of her six-year-old Taurus when Gayle cried out. Lucy, her back arched inward to an extent that seemed anatomically impossible, was on the lawn in the throes of a violent grand mal seizure.

Quickly, but with businesslike calm, Ellen reached in the glove compartment of her car, withdrew four wooden tongue depressors bound together at the end with adhesive tape, and then hurried over. Lucy's teeth were snapping together like a jackhammer, threatening damage to her lips and tongue. Saliva was frothing out of the corner of her mouth.

"What should I do?" Gayle asked. "I've seen some of the children have seizures, but never Lucy."

"Well, I have," Ellen said, rolling her grandchild onto her side so that, should she vomit, she wouldn't aspirate her stomach contents. Next she squeezed her thumb and third finger forcefully into the angle of the child's jaw. Bit by bit, the pressure overcame the spasm in Lucy's muscles. A small gap opened up between her teeth, and Ellen expertly inserted the makeshift tongue blade device. With one hand holding the blades in place, and the other maintaining Lucy on her side, she nodded to Gayle that matters were under control.

"Should I have Mr. Donnegan call nine-one-one?" Gayle asked.

"No, dear. Lucy will be fine. We just need a little time here."

"I'll go get Mr. Donnegan anyway."

"Do that."

The violent seizure had largely abated when the headmaster arrived. Ellen was sitting on the grass, Lucy's head cradled in her lap. The girl was unconscious now — "post ictal," the doctors called the condition. Ellen checked that Lucy hadn't soiled or wet herself, then looked up at the headmaster and shrugged.

"Should we send for an ambulance?" he asked.

"She'll be fine in twenty minutes. This hasn't happened for a while. Her medication may have to be tweaked. If it's okay with you, I'd just as soon she stay in school if possible. Just leave us right here for a bit. If she's not up and about in twenty minutes I'll take her home. But she's better off here with the other children. Much better."

Donnegan looked for a moment as if he was going to object, but instead reached down and patted Ellen on the shoulder.

"Whatever you say, Mrs. Kroft," he said. "You know this kid best."

Ellen sat on the newly mowed lawn, staring off at nothing in particular, rocking Lucy gently in her arms, and making no attempt to stem the steady flow of tears from her own eyes. Minutes later, the girl began to come around.


Ellen slid behind the wheel of the Taurus and headed north. In moments, in spite of herself, she was reliving the horrible sequence of phone calls that had signaled the start of it all.

"Mom, something's wrong with Lucy. I took her to the pediatrician this morning. He said she was in terrific shape. Fiftieth percentile in height and weight, way ahead of most three-year-olds in speech and hand-eye coordination. Then he gave her two shots — a DPT and an MMR. That was about eight hours ago. Now she's screaming. Mom, her temperature is one-oh-three-and-a-half and she won't stop screaming no matter what. What should I do?…"

"… I called the doctor. He says not to worry. Lots of kids get irritable after their vaccinations. Just give her Tylenol…"

"… Mom, I'm frightened, really frightened. She's not screaming anymore, lout she's completely out of it. Her eyes keep rolling hack into her head and she doesn't respond to anything I say. Nothing. She's, like, limp. Dick is getting the car right now. We're going to bring her to the emergency room…"

"… They're going to keep Lucy in the hospital. They don't know what's wrong with her. Maybe a seizure of some sort, the doctor says. Mommy, it's bad, I'm so scared. It's bad. I know it is. Oh, Jesus, what am I going to do? My baby…"

What am I going to do?

Beth's panicked words echoed in Ellen's thoughts as they did almost every school day after drop-off. With effort, she forced them to the background. There were other things to focus on this day, most notably a strategy meeting across the Potomac at the headquarters of PAVE — Parents Advocating Vaccine Education.

Driving by rote, Ellen headed up the George Washington Parkway toward the Teddy Roosevelt Bridge and D.C. Now a trim, silver-haired sixty-three, she still recalled all too vividly the day just before her fifty-fifth birthday when she went, according to her husband at least, from being "good-looking" to being "a damn fine-looking woman for your age." A year and a half later, Howard had left their twenty-nine-year marriage and run off to be with a thirty-something cocktail waitress he had met during an engineering convention in Vegas.

At the time, it was as if her life, on cruising speed, had hit a brick wall. She accepted an early retirement package from the middle school where she was teaching science, and then effectively pulled down the shades of her existence, shutting herself in and her friends out. Ironically, it was the tragedy surrounding Lucy that pulled her back into the world.

She had always been a positive, upbeat person, but Howard's hurtful and unexpected departure coupled with the end of Lucy's life as a vibrant, healthy child had been a one-two punch that threatened to send her spiraling to the bottom of a Valium bottle. With the help of unrelenting friends and a godsend of a therapist, she gradually opened the blinds again and began putting one foot in front of the other. Now, working out at the gym several times a week, intimately involved in her granddaughter's life, doing volunteer work at PAVE, and functioning as the lone consumer representative on the blue ribbon federal panel evaluating the experimental supervaccine Omnivax, she was running on all cylinders.

Ellen lucked into a parking space not half a block from PAVE headquarters. For a few years after its inception in the mid-eighties, PAVE had been a true grassroots organization, run from the kitchen tables of its two founders — Cheri Sanderson and Sally Lynch, both of whom were convinced that their children had been irreparably damaged by vaccinations. One family at a time, the two mothers discovered they were not alone. And now, through vision, patience, and hard work, PAVE had become a major force, with interest and even some support up to the highest levels of Congress, in addition to tens of thousands of supporting members. The words "Research," "Education," and "Choice," emblazoned on their logo, expressed the agency's goals.

"We are not a bunch of Carrie Nations charging into immunization centers with axes," Cheri had explained during Ellen's first volunteer-orientation session. "But we are tough when we have to be. We will not stop until the powers that be recognize the need for research on the immediate and long-term effects of vaccines, as well as the critical need for public education and ultimately parental choice when it comes to vaccinating our children."

PAVE had its vehement detractors in the scientific, pediatric, infectious disease, and political arenas, but with each passing year, morbidity statistics; clinical disasters; well-attended, PAVE-sponsored scientific conferences; and parents who experienced what they felt certain was a cause-effect relationship between vaccinations and their children's disabilities added to the organization's influence, membership, and war chest.

In the early nineties, the now tax-exempt corporation moved its extensive library, dozens of drawers of case files, seven-person staff, and cadre of committed volunteers to the second floor of a brown-stone on 18th Street between DuPont Circle and Adams-Morgan. Following the disaster with Lucy, Ellen had begun to send in modest donations. Later, she took the intensive workshop for volunteers conducted by Cheri and became qualified to man the phones. Then, a year or so after that, word was passed on to PAVE of the establishment of a consumer seat alongside the scientists and physicians on the federal commission evaluating Omnivax.

Ellen was told by Cheri and Sally that, as a retired middle school science teacher without a track record of militancy and confrontation on the vaccine issue, she would be the perfect person for the job. Ultimately, the powers at the FDA agreed. Ellen suspected that those who offered her the appointment were certain either that she would remain relatively silent, or that the scientists and physicians on the panel could easily preempt her views if they had to. Not that it mattered. She was only one vote out of twenty-three, and support for the megavaccine and its thirty components was overwhelming from the start. Even if she opposed the project, which in fact she did, it was clear from the first meeting of the committee that the final tally would stand at twenty-two to one.

The door to the PAVE offices opened into a crowded work area with half a dozen desks, all manned at the moment. As Ellen stepped into the room, the staff on hand rose as one and applauded. She did her best to wave them all back to their seats, then smiled good-naturedly and bowed. Over the past two-plus years, they had all received frequent briefings of the Omnivax sessions, and at times verbatim transcripts. They had all heard stories of how, armed with epidemiological and research data she had painstakingly accumulated, as well as affidavits from experts supporting the PAVE positions, she had stood up to some of the leading proponents of expanding the scope of immunizations. And as often as not, she seemed to have held her own.

"Please, please," she said, "that's almost enough applause. You there, a little louder, please. Much better. Now, those of you who desire to, and have washed themselves according to my protocol, may come forward, kneel, and kiss my ring."

"Hey, where you been?" Sally Lynch called out from the doorway.

"A little trouble with Lucy at school," Ellen replied. "Nothing serious."

"Well, Cheri's late, too, for a change. She'll be here in a few minutes unless she isn't. She says she has big news for us."

In her mid-forties, Sally, tall, dark-haired, and businesslike, was more introspective and far less flamboyant than her co-director. It was a perfect match — one working behind the scenes, the other in front of the cameras, yet both possessing a high degree of intelligence, compassion, and drive. If Sally had a shortcoming, it was her extreme intensity, which sometimes clouded her judgment and at other times overwhelmed her patience. But that ferocious commitment was understandable. Within hours of receiving his routine vaccination shot, her six-month-old son, Ian, developed a temperature of over 106, had a seizure, and died. Just like that.

Sally's office was as well organized and neat as Cheri Sanderson's was cluttered. On one wall was a professionally made, three-foot-square, multicolored graph showing that the number of autistic children seeking state services in California more than doubled in the eighties and nearly quadrupled in the nineties. The other walls were covered with dozens of framed photographs, most of them of autistic children, whose condition, their parents were certain, was caused by vaccinations. One of the photos, an eight-by-ten directly behind Sally's desk, was of Lucy. Tucked into the corner of the frame was a heartbreaking snapshot of the girl on a swing, taken a few weeks before her catastrophic transformation.

"Coffee?" Sally offered.

"No thanks. I'm already buzzed."

"So, in a few more days it's over," Sally said, referring to the impending commission vote on Omnivax — the subject of this morning's meeting of the three of them.

"So I hear."

"Any headway?"

"You mean in changing votes? What do you think?"

Sally slammed her fist on the desk.

"Gosh, but this whole Omnivax business is frustrating," she said. "Look at this, Ellen, look. It's a research report put out by Congress. Congress! Vaccine Controversies.' Can you imagine? At last they're asking questions. All of a sudden, they care. Here, check this out. All the drug manufacturers are being required by the FDA and EPA to remove mercury from their childhood vaccines. Do you know how many millions of kids got shot up before anyone even thought to take a look at the mercury situation? Here, look, DPT and polio vaccines modified; rotavirus anti-diarrhea vaccine recalled because of infant bowel injury and deaths; hepatitis B vaccine being re-examined. Ellen, the Omnivax forces can't be allowed to win."

Ellen sighed and stared out the window. Nothing Sally was showing her now was news to her. Her small study at home was overflowing with notebooks, textbooks, Xeroxed articles, and computer printouts. Over the past two-plus years she had transformed herself from a concerned grandma to an expert on vaccinations and vaccines. True, there had been some victories, like the mercury removal and the rotavirus vaccine recall. But there was also an impressive regiment of respected and renowned scientists and pediatricians who were armed with data — valid or flawed, who could say? — showing the number of lives to be saved by each and every one of the vaccines slated for inclusion in Omnivax. Thousands upon thousands of lives.

"Sally," Ellen said finally, "you and I both know the power and influence of those pushing this thing, the deans of medical schools, professors of pediatrics, to say nothing of the President and his wife."

"Hey, wazzapnin'?"

Cheri Sanderson bounced into the room, a cup of coffee in one hand, a bulging leather portfolio in the other.

Five-three, if that, Cheri was a kinetic ball of energy and optimism.

"Ellen tells me the vote's going to be twenty-two to one," Sally said.

"What did you expect?" Cheri replied. "These people were hand-picked because they were going to vote yes. Hell, the pharmaceutical giants finance many of their labs. How would you expect them to vote? You've done great, Ellen. You stood your ground and presented our issues as well as anyone could have."

"Thanks. I'm a little disappointed I haven't had more of an impact, but like you said, the deck was stacked from the beginning. So, what's this news you have?"

Cheri paused dramatically.

"The news is, according to this press release from her office, the antichrist of sensible vaccine thought, Lynette Marquand herself, will be addressing the nation from the FDA on the day of the final panel debate on Omnivax."

"Nice timing," Ellen said. "The final vote is scheduled for two days after that meeting."

First Lady Lynette Marquand and Secretary of Health and Human Services Dr. Lara Bolton were the heavyweight champions of mass vaccinations. Four years ago, Lynette's husband, Jim, had narrowly won a bitter, hard-fought election. Now, with just a few months to go, he was in a dogfight again, neck and neck with the man he had beaten by only two points and just a dozen electoral votes.

One of his campaign promises — the one with the greatest likelihood of coming to fruition unscathed — was the development and distribution of a supervaccine. The vaccine, Omnivax, was to be given to infants early in life, and eventually mandated for everyone. Containing up to thirty different antigens — killed or modified viruses and bacteria — it would be given as a shot for now, and orally as soon as research, already well under way, permitted it. The immune systems of the recipients would learn to make antibodies against the various germs so that, should they encounter any of them in the future, their defenses would be primed and ready to fight them off. Editorials had equated Jim Marquand's bold pronouncement with the John Kennedy promise to put a man on the moon. Now, in this arena at least, he was looking good.

"What subtle timing," Ellen said. "Lynette Marquand is out stumping for her husband, who is getting boatloads of PAC money from the pharmaceutical industry."

"And like Cheri said, a lot of these doctors and professors on your panel owe their careers to vaccine research grants from various drug manufacturers," Sally added.

"So," Cheri asked, "do we have any bombshell Ellen can explode at that session? If Lynette's media people do their jobs as well as they have so far, there should be a gaggle and a half of reporters covering the show."

"I don't know what to say," Ellen replied. "Week after week, month after month, I've been searching for holes in what the committee is proposing, breaking down every component of Omnivax, looking for some kind of scientifically valid study that would confirm that one of the thirty vaccines was flawed — or even the opposite, if one of the components was flawless." She gestured to the graph behind Sally's desk. "I can't even find any hard data that prove vaccinations contribute to the increase in autism. Increased awareness, one expert tells me. Misdiagnosis, chimes in another. Environmental factors, pipes up someone else. Anecdotal, pooh-poohs a professor."

She calmed herself before continuing.

"When I first joined the committee, my teeth were bared and I was ready to chew them all apart for what they have and have not done. I still want to do that, believe me, I do. But there're so few scientific studies, even on our side. Nothing about this whole vaccination business is clear-cut except that we need to know more — much more. In the meantime, the other side is going to win this particular battle, and Omnivax is about to leap into our culture. You and Cheri and everyone associated with PAVE, including me, have got to resolve to keep on fighting for the scientific truth, whatever that is."

Sally looked clearly frustrated.

"All this time, all your studying, and you haven't turned up anything about any of the components of Omnivax?" she asked.

"I'm still working on it," Ellen replied. "Honest, I am."

She felt the chill in Sally's expression and hoped the woman couldn't tell that, in fact, she was holding back some information. She believed that neither Sally nor Cheri could be trusted to remain silent until Rudy Peterson's work on their behalf was further along, especially with Omnivax about to be approved. Rudy had been sifting through information on the supervaccine components for well over a year now without turning up anything damning. There was, however, clinical data on one of the components that he felt was limited in scope and obtained by research that was a decade old and possibly shaky in design. That component was Lasaject, a vaccine against the virus responsible for causing deadly Lassa fever.

Rudy was steadfast in maintaining that the data might still support the conclusions that the vaccine was safe. He needed more time — time during which the vaccine's manufacturer was unaware of his investigation.

Ellen felt certain that this wasn't the moment to tell the aggressive directors of PAVE that while there was no immediate chance of defeating Omnivax, there was lingering hope at least of denting it.

Загрузка...