2 Rare as Rhenium

When the announcement of Gwendolyn’s ascent to the president’s office at Bayner Genetics reached the company’s veteran scientists, many of them quit immediately in disgust, despite the announcement’s oft-repeated promise that nothing of significance would change. As a result, a few of the young geneticists found themselves in positions of unparalleled responsibility and influence. Some were promoted from research assistants to full researchers, others to research directors in charge of an entire lab. The pay and benefits were unmatchable at their experience level, and the work – at least at first – was as rewarding as it had been before Abe and Meg’s unfortunate, if altogether anticipated, departure.

The feared changes did soon come to pass, although not even the jaded Bayner veterans could have predicted how Gwendolyn’s increased interest in the details of the business would render the work marginal at its best and fraudulent at its worst. The one thing that was not altered was the company’s fervent search for a cure for Huntington’s disease. Before her ascension was announced, in fact, Gwendolyn called in the project’s director of research and doubled his salary. When the announcement of Gwendolyn’s appointment was made, he was one of the few veterans who decided to stay.

The first of Gwendolyn’s transformative ideas came directly from the victims of exceedingly rare diseases that, because of their small numbers of victims, were ignored by for-profit drug companies, which was to say all of them. What justification, after all, could a company possibly give its stockholders for frittering away money on a disease that afflicted only one-hundred-thousand or so people worldwide? A company could just as easily spend its limited resources on diseases that attacked tens of millions of paying customers who were every bit as desperate for a lifeline as those unlucky enough to come down with something too rare to provide a reasonable return on investment.

Government researchers did good and honorable work, but they were ordered by elected officials not to step on the potential profits of the free-market drug companies. As a result, government scientists focused on the hardscrabble research that yielded breakthrough discoveries in the basic science. These expensive discoveries were then passed on to the private sector, where they were used to springboard products so profitable there was plenty of cash left over to appropriately thank the cooperative politicians.

The government was aware, of course, that some diseases just weren’t worth caring about. That’s why there was an Orphan Drug Act. The law gave subsidies and tax breaks to companies who agreed to work on unprofitable maladies affecting fewer than two-hundred-thousand new victims a year. The few companies who took the risk, however, focused on the least rare of the most rare, which once again left the victims of the most rare of the most rare out in the cold.

It was in their desperate and exhausting search for someone willing to try to save them from their bizarrely uncommon fates that the victims of exceedingly rare diseases eventually made their way to Gwendolyn Bayner’s door.

If they were of modest means, as most were, Gwendolyn listened politely and suggested they petition the government for help, all the while knowing it would do them little good. If the desperate visitors were rich, on the other hand, Gwendolyn’s eyes welled with empathetic tears and she listened to their sad pleas intently and consumed a copious number of tissues, especially if there were a child involved. Parents were often willing to deplete their entire fortunes in the struggle to save a child.

It happened for the first time exactly one year after Gwendolyn had moved into the president’s office at Bayner Genetics. Margaret and Stanley Johnson, a despondent couple from Newfoundland, Canada, were desperate to save their preschooler from the ravages of Batten disease, a sickness that struck only about three in one-hundred-thousand children.

The disease was so rare because it was only transmitted to a child when both parents had similar defects in the CLN3 gene on chromosome 16. Both Stanley and Margaret carried the defect, yet neither suffered from the disease, which was most often the case. Only when their genetic material combined inside their son did it bloom into the brutally fatal cocktail that was Batten disease.

Little Ben had seemed completely normal until he was about four years old. Then the seizures started. Doctors prescribed a pink liquid that Ben was given a teaspoonful of several times a day. That worked for a few months, but then the boy developed vision problems that glasses were unable to correct. He started tripping over things that weren’t there. The falls were shocking and dangerous enough when the path was clear – he’d broken both his wrists, one of them twice, all three times by falling the wrong way on soft carpeting – but they turned disastrous when the boy hit his head on something hard on his way down.

Finally, doctors found a defect in the CLN3 gene on chromosome 16 and told the Johnsons that they were very sorry to report that it was Batten disease.

The Johnsons researched Batten disease on the Internet and found that it would slowly atrophy their son’s brain, gradually taking away his muscle coordination, his sight, his intellect, and finally his life, probably before he turned twenty or shortly thereafter. They also learned that virtually no one was looking for any kind of treatment, no less a cure.

Thus began the Johnsons' frantic search for someone – anyone – willing to give their doomed child a chance at life. By the time they darkened the doorway at Bayner Genetics, they'd been turned away so many times that they knew very well that their son's disease was not one anyone was interested in fighting. No fewer than two-hundred-thirty different medical research corporations, big and small, had felt their pain and suggested they petition the Canadian government for help.

Stanley Johnson was not accustomed to being told no. He owned a chain of hardware stores in Canada and was quite rich. True, he couldn't compete with the billions that could be collected from the millions who suffered from more common maladies, but he could do what he could do, and he stood ready to spend his last dime to save his son.

It was this overwhelming sense of desperation that hit Gwendolyn like a sack of hundred dollar bills as the Johnsons shuffled dejectedly into her plush office. She rose from her chair, went to the beleaguered couple, shook their hands, and said, “Mr. and Mrs. Johnson! Welcome! Please come in. Thank you for coming. Please have a seat."

The couple seated themselves in the two big leather chairs that addressed Gwendolyn’s desk – he on her right and she on her left. Gwendolyn handed them a box of tissues and studied the weary couple as she made her way to the other side of her desk. Looking at them, she couldn’t help but think of the old nursery rhyme, the one about Jack Sprat, who could eat no fat, and his wife, who could eat no lean, for Stanley was as thin as a stick and his wife was as meaty as a Christmas turkey.

Gwendolyn noticed the woman’s sizeable diamond engagement ring, which sank into her spongy finger to the point that it looked like the stone was imbedded directly in the flesh.

Gwendolyn produced another box of tissues for herself and set it on the desk.

"Now," she said, "what can we do for you?"

Mr. Johnson did the talking. The monologue came out of him effortlessly, as if he were an actor who has been playing the same part for so long that his lines are as easy to remember as the words to an old song everybody knows.

"Ms. Bayner, our son has Batten disease. As I’m sure you’re aware, it will kill him if something is not done. Even so, we have not been able to find anyone to help us. You, frankly, are our last hope.”

(He’d added this sentence the last five times he’d delivered the plea.)

“I know there are not enough children suffering from the disease to make a cure profitable. The many companies that have turned us away have made that abundantly clear. But I am a wealthy man, and I stand ready to pay your research costs in full, plus a generous profit, of course."

"I understand," Gwendolyn said, plucking a tissue from the box. She looked again at Margaret Johnson's diamond ring and wondered how it had not turned her finger blue from lack of circulation, or why the woman had not simply had the band enlarged.

Suddenly, Mrs. Johnson began to desperately work at the ring. She twirled it and tugged at it with such energy that Gwendolyn feared she might pull her finger off. Finally the ring came loose and Mrs. Johnson slid it across the desk toward Gwendolyn.

"Here," she said. "As a token of our sincerity."

Gwendolyn slid the ring gently back toward the pathetic woman and said, "Oh! Mrs. Johnson! It's a lovely ring, but I'm sure it has sentimental value far beyond its actual worth. Besides, I do not doubt your sincerity. Please, put it back on.” Then she dabbed at her eye with the tissue and added, “We'll do everything we can to help your son."

Hearing Gwendolyn’s offer of help, Stanley and Margaret Johnson instantly turned to jelly. They slid from the leather chairs and fell to their knees. Margaret Johnson clutched her husband’s side and began to weep into his sleeve. Stanley Johnson pulled two tissues from the box and handed them to her.

"Ms. Bayner," he said looking up, "you can not know how long we’ve been waiting to hear those words. I can not tell you how grateful we are. You are a saint. The answer to our prayers. Bless you."

Still on his knees, his wife clawing at his side, Stanley Johnson struggled to find his checkbook.

"How much will it take to get started immediately?" he said, trying to steady his wife with one hand as he used the other to dig for the book.

"I suppose one hundred should do to start," Gwendolyn said. "Unless that's too much."

"One hundred dollars?" Stanley said.

Gwendolyn smiled and waited for the man to come to his senses. After a second or two, Stanley Johnson’s face reddened and he said, "Oh! Of course! One hundred thousand! Yes! Well! I’ll have to call my accountant to have that amount freed up. I'm sure you understand. It will be done by the end of the day."

He glanced at his watch and saw that it was after two in the afternoon. "Or by the end of the day tomorrow at the latest."

"That's fine, Mr. Johnson," Gwendolyn said. She rose from her chair, made her way to the front of her desk and encouraged the couple to their feet. "Please see my secretary. She will give you our bank routing information."

Stanley Johnson struggled to stand, but was held down by his wife, who was clinging to his right arm as if he were rescuing her from quicksand.

"Thank you so much Ms. Bayner. Thank you! You are a saint,” he said, out of breath with the effort to lift his wife.

"As you said, Mr. Johnson. But I am nothing of the sort. I am a simple businesswoman."

Stanley finally got his wife to her feet, and Gwendolyn began to gently escort the grateful couple to her door. Halfway there, she stopped suddenly and said, “Wait! Mrs. Johnson! Please wait right there.”

Stanley and Margaret Johnson froze. Margaret clutched her husband’s arm tighter and feared Gwendolyn would take back her offer to help her son. Stanley worried that the amount would rise from thousand to million. Together they watched as Gwendolyn scurried back to her desk, picked up the diamond ring, then scurried back to Margaret Johnson and returned it to her finger, although she could get it past only the first knuckle.

“Thank you, Ms. Bayner,” Margaret said, looking at the ring. “You are a kind and considerate woman.”

“Please. Call me Gwen,” Gwendolyn said.

Margaret Johnson did not stop crying until they were downstairs and back in their car. The money was in Bayner’s account by four that afternoon.

Once Bayner Genetics developed a reputation for working on impossibly unprofitable diseases such as Batten disease, a parade of people who were either sick themselves or, better yet, had sick children, made the pilgrimage to Gwendolyn’s office.

The "Hope is Healing" program, named by Gwendolyn personally, became one of the company’s biggest moneymakers.

"Even if we don't find a single cure," Gwendolyn said, "we're selling hope. And hope, it turns out, is rarer than rhenium.”

The parade of people willing to pay market price for hope grew even larger after Bayner scientists actually did discover a partially effective treatment for Marfan Syndrome – a genetic disorder that attacked connective tissue and so caused problems with everything from bones to blood vessels. It grew larger still after Gwendolyn, seeing how little the company would make by selling Marfanex, decided to give it away for what it cost to manufacture, which turned out to be three cents per pill.

To Gwendolyn's delight, the rich families of children and loved ones who sadly died of a disease before its cure could be found rewarded her beneficence by setting up foundations and trusts to honor the memories of the dead. All of the money went directly to Bayner Genetics, no questions asked. It was the least they could do, the benefactors all agreed, for the one woman on Earth who had tried to help them.

The second big change at Bayner Genetics sprang from Gwendolyn Bayner's own simple imagination. She knew enough about genetics to know that it was “the software that controlled how the body functioned and how it looked." It was the second part that initially caught her interest.

Her first idea was to develop a drug that would make all human beings look essentially the same, thereby eliminating racial discrimination.

“We can call it Race-Erase,” Gwendolyn said, although everyone in the room usually groaned when she did.

She dropped the idea after three months when the researchers to which she'd assigned the bizarre project reported no progress and, worse yet, no hope for much progress. They might be able to get the skin color right, they said, but the other features were way out of their range.

Undaunted, Gwendolyn next suggested designing a pill that would cure obesity by making people who took it feel satiated after eating less than two-thousand calories a day. Take it once, and you’d be naturally thin for the rest of your life.

When word got out that Bayner Genetics was planning to make people stop eating to excess, several large agricultural corporations, grocery store chains, restaurant franchises and fitness companies contacted Gwendolyn and wound up paying her an undisclosed sum to drop the idea. Gwendolyn never let on how large the settlement was, but six months after the deal was inked Bayner Genetics moved to a five-story building on the beach.

Gwendolyn was no scientist, but she knew a good thing when she saw it. If she announced plans to develop pills that would threaten the profits of other corporations, she imagined, the targeted companies would be willing to pay a small fortune to nip the threat in the bud. Like the agricultural corporations and the grocery retailers, they would pay even before investigating whether the threat was real, because they realized that it would be much cheaper to stop a threat before Bayner Genetics had spent millions in research and development.

It was a brilliant business strategy. The cost of the research was zero, and the revenue was instantaneous and limited only by Gwendolyn’s curious imagination. Manufacturers of hair color paid to have her drop phantom plans to permanently change hair color with a single pill. Makers of tinted contact lenses paid her to drop publicized but nonexistent plans to change eye color. Companies selling tanning beds and suntan oils paid her huge sums to give up on developing a pill that would give people a permanent tan. (This was one trick Bayner Genetics actually could do, thanks to its work on Race-Erase.)

“Who knew suntan oil was even that profitable?” Gwendolyn said.

And on it went.

Under Gwendolyn’s unorthodox leadership, Bayner Genetics became more profitable than it had ever been under the more traditional guidance of her parents. As a result, within four years of taking the helm, Gwendolyn had become very rich. No one knew for sure how rich, but it was clear to everyone that she spared herself no luxury.

She lived in an ocean-side mansion that was alive with chefs, maids, butlers, nurserymen, cabana boys and chauffeurs. The garage was stocked with five Bentley Continental Flying Spurs with single-letter license plates that read: C, A, T, U and G. The mansion’s columned façade evoked the Parthenon. The front door was twelve feet tall and ten feet wide. It opened onto a foyer as big as a basketball court and decorated with larger-than-life statues of great composers and busts of lesser ones supported by granite pedestals. (Mozart had a full statue.)

In the rear of the mansion, ornate half-moon balconies extended from each of the ten upstairs bedrooms, all of which had ocean views and their own bathrooms. The dining room table, large enough to comfortably seat twenty-two, was set with Royal Copenhagen china, gold flatware, and Waterford crystal. The dining room featured a picture window that looked out on a lush rose garden and, beyond it, a swimming pool that seemed to merge with the infinite Atlantic, upon which one could frequently see scuttling by the sailboats owned by the other members of the super-rich class.

Gwendolyn’s lifestyle, while unabashedly extravagant, might have been easily excused by anyone who knew her eventual fate – that she was doomed to follow in her parents’ footsteps. Certainly she had no qualms about it.

“I might as well live it up while I can,” she said. “God didn’t give me as much time as most other people.”

The one person who steadfastly refused to excuse Gwendolyn’s lavish lifestyle, and the one who most often expressed his opposition to it, was her husband, Douglas Douchay, whose income, while not small by any means, was dwarfed by that of his wife, who suspected that the disparity between their paychecks was the real reason for her husband’s sour discontent.

Worse than Douglas’s criticism of her unrestrained spending, Gwendolyn thought, was that he dared to criticize the methods by which she’d come by the money. It was bad enough, he complained, that she extorted untold millions from corporations by threatening them with phantom drug programs. Ten times as bad – a sin unforgivable in his opinion – was how she’d profited by selling hope to people who were so obviously doomed.

“You are apparently unaware of how valuable hope is,” Gwendolyn told him.

After seven years, Gwendolyn decided she’d finally had enough of Douglas’ self-righteous whining. After he left for work one morning, she instructed the servants to box up his belongings and place them on the curb outside the estate’s wrought-iron gates. Then she handed a manila envelope to a lone servant and stationed him under a popup gazebo erected next to the small hill of boxes.

When Douglas returned home from work, the servant blocked his entrance and motioned for him to roll down his car window.

“Ms. Bayner has ordered me to prevent your entry and give you this,” he said, handing Douglas the manila envelope.

“Ms. Bayner?” Douglas said. “Her name is Mrs. Douchay.”

“She has ordered us all to begin addressing her by her maiden name, sir,” the servant said. “I’m terribly sorry. She was quite clear.”

Douglas opened the envelope to find divorce papers and a handwritten note that read simply, “Dearest Douglas, We’re done. Have a nice life. Love, Gwendolyn.”

“What is this about?” Douglas asked the servant.

“I know nothing but what I’ve told you, sir,” the servant said. “I believe all of your belongings have been gathered up and placed in these boxes. Of course, if we’ve missed anything we’ll be pleased to send it along.”

“Is she inside?”

“I’m afraid I can’t say, sir,” the servant said.

Douglas grabbed his cell phone and dialed his own number, or what he still considered to be his own number.

“Bayner residence,” answered a voice he did not recognize.

“Let me speak to Gwendolyn,” Douglas said.

“Ms. Bayner is not here presently.”

Douglas punched the phone off and called Bayner Genetics.

“Bayner Genetics,” the receptionist said.

“Gwendolyn Bayner please.”

“Who may I say is calling?”

“Her husband.”

“I’m sorry, Mr. Douchay. Ms. Bayner is in a meeting. May I take a message?”

Douglas thought for a moment, then said, “Yes, tell her I think she’s lost her mind.”

He punched off the phone and called the Boca Waldorf Astoria.

“Boca Raton Resort and Club,” a voice said.

“I need a room for the night,” Douglas said, then reconsidered. “Better make that for a week.”

The divorce agreement was finalized within the month, although it would take several more months to wind its way through the courts. Gwendolyn never showed her face. Douglas Douchay’s attorney, who’d been working on high-end divorces for forty years, told Douglas he’d never seen such a generous settlement. Douglas would never have to work another day in his life, would be given a comfortable home of his own choosing – as long as it was sufficiently far away from Gwendolyn’s mansion – and could generally continue to enjoy his upper-class lifestyle. The only hitch, the attorney saw, was the confidential addendum that was not filed with the clerk of courts because no family court judge would approve of its harsh stipulation that Douglas not contact his daughter for any reason until she turned twenty-one, which was fourteen years away.

“That’s a tough pill to swallow,” Douglas complained.

“I agree,” his attorney said, “but if you do not accede, your wife has promised – confidentially of course – to spend three times the amount she expects to spend on this settlement to make your life a living hell. I have no doubt she will succeed in that goal. I have seen it done before, and it is none too pretty. She will no doubt accuse you of child abuse. That alone would most likely devastate your career. No one wants to work with a pervert.”

“I’m not a pervert.”

“Of course you’re not, but it’s not the conviction that will destroy you, it’s the accusation. Nobody wants to work with someone who might be a pervert.”

“Give me the damn papers,” Douglas said.

Thinking to himself that the divorce also freed him from having to care for a victim of Huntington’s disease, he signed them all.

For his daughter’s third birthday, Douglas Douchay had given Barbara a toy terrier, which the girl had named Terror. Gwendolyn didn’t much care for dogs, especially small, yappy dogs, but little Barbara loved the pup so much that when it turned a year old and was as large as it was ever going to get, Gwendolyn had a jeweled collar made for it at Tiffany’s. Seeing the collar, Douglas had wondered aloud how many poor children in Africa could be fed with the money spent on the foolish bauble.

After the divorce – perhaps in response to Douglas’ sudden disappearance – the dog developed a nervous bladder that caused him to piddle on the mansion’s wooden floors, even though he had free access to the lush lawn outside. If the tiny drops of urine weren't promptly dabbed up, they ate through the finish and made light spots on the wood.

Gwendolyn told her seven-year-old daughter that they had to get rid of the dog. It had become too much of a bother, she said. The girl objected so strenuously and with such a waterfall of tears that, instead of taking Terror to the pound, Gwendolyn assigned a maid to follow the little dog around all day with a roll of paper towels and a spray can of wood cleaner.

On the day the divorce was final, Gwendolyn took the modest engagement ring Douglas had given her seven years earlier and threaded it onto Terror’s jeweled collar. Then she instructed the staff to begin feeding the dog in the dining room, at the head of the table that seated twenty-two, in the place once reserved for Mr. Douchay.