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1THE WORLD’S DEADLIEST KILLERS
Bob Klein championed Prop 71, led it to victory, and guided the program as Chairman for almost a decade.
Nearly one in two Americans has an incurable disease or disability.1
April, 2003.
As my wife Gloria and I sat in the outer office of Klein Financial Enterprises, Inc., it occurred to me that the German word klein means “small.” Bob Klein was challenging the world’s deadliest killers — with a weapon that was the smallest of the small.
Essentially invisible, stem cells might save lives and ease the suffering of millions, IF the research could be paid for, and IF the political obstacles could be dealt with; very large “ifs” indeed!
But giant problems were nothing new for the person I was waiting to meet.
To fight homelessness, Bob Klein had developed a state agency, the California Housing Authority (CHA), to make low-cost home loans for the middle class and poor. Though his company could have profited, he would not accept contracts from the program he had built. He served on boards attempting to lower the threat of nuclear war, increase environmental awareness, and even preserve classic buildings.
But his world changed when his teenage son Jordan developed type 1 diabetes. That may not sound like much — insulin shots, dietary restrictions, blood tests every day — but diabetes is the number one cause of adult onset blindness, kidney failure, and the amputation of limbs.
Klein, a bar-admitted graduate of Stanford Law School, became the principal negotiator for the Juvenile Diabetes Research Foundation (JDRF), perhaps the greatest patient advocate organization in the world.
One night in 2002, a miracle occurred. It was just before the invasion of Iraq. Washington had a singular focus, the agenda of war. President George W. Bush insisted that every available dollar be concentrated on the war effort. No legislation would even be considered unless it had 100% approval on both sides of the aisle. Every Senator and Representative, Democrat and Republican alike, agreeing on something? Plainly impossible.
But JDRF and the patient advocate community were close to obtaining major funding for diabetes research, and they were not about to give up now. Much of the money they sought would go to diabetes research; the rest would go to maintaining diabetes treatment centers on Native American reservations. Due to the high prevalence of diabetes among that population, shutting down the centers would almost certainly bring deaths.
Everything came down to the vote of one Senator, Don Nickels, Republican of Oklahoma. Klein and the patient advocate community organized thousands of individual phone calls, from leaders in the Senator’s business community to advocacy groups, corporate boards, and local families, swamping the Senator’s appointment calendar and jamming his phone lines.
Two hours before the cutoff time, Senator Nickels withdrew his objection — and diabetes research received a 5-year commitment of $1.5 billion.2
After this success, the parents of California’s diabetic children continued working together. Sony Picture executives Doug Wick and Lucy Fisher formed a group called Cures Action Now (CAN), supported by the legendary film director Jerry Zucker and producer Janet Zucker, as well as Lauren Weissman, the sister of top stem cell scientist Irv Weissman, and more.
They approached Bob Klein. Would he organize a citizens’ initiative to raise a billion dollars for stem cell research?
“No,” said Bob.
“Too much?” came the disappointed response.
“Not enough,” said Bob, “It has to be at least three billion.”
Football paralyzed Roman Reed, but he still loves the game.
Don and Roman Reed at the beginning of their journey.
A door opened.
“Bob can see you now,” said the office assistant.
Wide-shouldered and craggy-featured, Robert N. Klein was seated at a long black table, scribbling something indecipherable on a yellow legal tab. He held up an index finger.
His handwriting is almost as bad as mine, I thought. My wedding proposal to Gloria had been in writing, but she could not read it, and threw my proposal away. We had been married 34 years so it worked out, but after that I typed everything important.
I looked around at the lovely office: carved wooden horses, a wall of books, a picture of young Bob Klein meeting young Bill Clinton, and a picture window above Palo Alto’s green trees, swaying; a forest orchestra conducted by the winds.
“Ah!” said Bob Klein, putting down the pen and extending his hand. He has a great beaming smile, radiating warmth and energy. I sat down, expecting a mini-lecture on Bob’s ideas, problems ahead, or chores that needed doing. But it was not like that.
“Tell me,” he said. He leaned back in his chair, clasping hands behind his head and getting comfortable, as if this was the most important event in his day, and he had nothing but time on his hands. I knew it was an illusion. I had maybe ten minutes before his next appointment.
In a rush of words I told him about our family’s most terrible night: September 10, 1994, a football game at Chabot College, Hayward, California.
Nineteen-year-old Roman Reed was the defense captain and middle linebacker. Under the floodlights he was playing his usual great game: 14 solo tackles, a bunch of assists, a diving one-arm interception, and a forced and recovered fumble.
Roman and a 341 pound giant blocker had been having an epic duel. Sometimes they crashed like trucks; other times Roman faded like smoke around the giant, reappearing on the other side, leaping on the runner, dragging him down. Once he dove and flicked out the ankle of the runner, breaking his balance like a cheetah tripping a gazelle.
Lucy Fisher and Doug Wick, motion picture legends, and co-founders of Cures Now. With Jerry and Janet Zucker, they dreamed the dream of Proposition 71, and worked hard to make it become real.
Between plays he roared up and down the sidelines, exuding energy like flame, helmet off, challenging, inspiring — “Roman made you afraid to do less than your best,” one player put it.
And then, in the surf-roar of shoulder pad collisions, on the third play of the fourth quarter — “Roman’s down, it’s bad!” said Gloria, “I saw it through the viewfinder!”
“Just the wind knocked out,” I said, as the play was whistled dead.
The players trotted lightly to the sidelines, all but one.
Dear God, don’t let it be Roman, I thought, looking frantically for him at the bench. He always liked to take his helmet off between plays, golden hair sweat-soaked, face red with exertion and competitive rage. But nobody had their helmet off, and a body lay still on the floodlit field.
I watched my feet trading places down the bleacher steps. This is a mistake, I thought, we just have to go back in time a few minutes and straighten it out.
“Don’t worry, Mom,” said Roman to his mother, “Nothing hurts. I don’t feel a thing.”
A shadow fell over us. I looked up. It was the giant blocker, number 22.
“Jesus God, Roman,” he said, tears running down his face.
“Not your fault, two–two,” said Roman, “Good hit,” and he reached up to shake the other’s hand.
I noticed something small, and terrible. My son’s fingers did not move. Sparing the other’s embarrassment, Roman sandwiched the giant’s hand between both of his.
At the hospital, a doctor ordered Roman’s shoulder pads to be sawed off. I started to object, this was expensive gear, designed to keep him safe from injury. But the doctor looked at me and I went silent, afraid he would say: what use will he have for them now?
After his helmet was also removed, a C-shaped metal tool was brought out. Roman’s hazel eyes flicked briefly to me once, then straight ahead, blazing green, as shallow pits were drilled into bone, and smoke rose from the sides of his skull. The doctor secured a clamp in the holes and fastened it to weights on the gurney below, immobilizing our son’s neck.
The X-rays came, and the diagnosis:
“Your son is paralyzed,” the doctor said, “He will not walk again, nor close his fingers.”
To make his point, the surgeon lifted Roman’s hand, told him to hold it up. Before the accident, Roman could bench-press 430 pounds. But now? When he let go, Roman’s hand fell like dead meat, so fast it slapped his own face. The brain-body connection was gone.
He could breathe, which was a blessing. But if he needed to cough we had to do that for him, shoving his stomach in hard, like a punch to the gut. It hurt him; the nerves inside still worked.
A flicker of hope. As I was sitting in the hallway, a book landed in my lap: Rise and Walk: The Dennis Byrd Story, about another football player who had been paralyzed. Byrd’s millionaire coach provided him with an experimental drug called Sygen, made from dried cow brains. The Sygen had been injected right after the accident, and Dennis Byrd walked again.
“Get that for my brother,” snapped Desiree, Roman’s sister, just in from college in Arizona.
More good news! There were FDA-approved clinical trials of Sygen going on right now, a nurse told me. If Roman was involved in the trials, we could get the drug free…
The medicine had to be injected no more than 72 hours after the accident. But it was raining and midnight when I called the hospital. Bring him in the morning, I was told, it will be all right. But it was not all right. We missed the cutoff deadline by one hour, and were denied.
I located the drug’s inventor, Dr. Fred Geisler, at the University of Chicago. He said the cutoff time was only for the clinical trials, and that the drug might work after the deadline — if we could get FDA approval. I called U.S. Representative Pete Stark, who contacted the FDA, helping us get “compassionate use” permission for the medication, though it was not yet officially approved.
Finding a drug source in Switzerland, I ordered the medication. It was not cheap. We borrowed. No doctor wanted to write a prescription for an experimental medicine.
But a kindly Chinese-American doctor, Chi-Chen Mao signed the prescription slip.
But what about side effects? The documents only mentioned minor stomach upsets, but still things can always go wrong. The first injections needed to be done in the hospital.
When the boxes of Sygen arrived, a nurse set up Roman with an intravenous needle in his arm. “Ready?” she asked, and turned the valve.
Roman’s eyes rolled back; he stopped breathing.
“Oh my god, mouth to mouth resuscitation!” I said.
Our son’s eyes went back to normal. He grinned and said: “Gotcha, Pops!”
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