Stem Cell Battles: Proposition 71 and Beyond

How Ordinary People Can Fight Back against the Crushing Burden of Chronic Disease — with a Posthumous Foreword by Christopher Reeve

Don C. Reed

• Publisher: WSPC
• Year: 2015
• ISBN:
  9789814618298
• Topic: Biological Sciences
• Subtopic: Biology
• Index: Biological Sciences

This is a one-of-a-kind book: combining easy-to-understand science, in-the-trenches political warfare, and inspirational stories. It aims to give hope to individuals and families who suffer from chronic disease or disability; to point out how ordinary people can make an extraordinary difference in the battle to ease suffering and save lives through supporting medical research; to share in “people talk” some of the amazing progress already achieved in the new field of stem cell research; to show how even such a magnificent success as the California stem cell program is under constant attack from ideological groups; to offer medical research as a force for international cooperation; to suggest how cure research lessens the need for the mountainous costs of endless care.

Unparalleled background: the author has been involved in virtually every important stem cell battle (state, national, and international) since embryonic stem cell research began. The author works closely with Robert N. Klein, sponsor of the California stem cell program, the largest source of such stem cell research funding in the world. In addition, the author is an award-winning teacher as well as writer, and seeks to entertain as well as educate. His book is not only substantive, but also fun.

The book would be a treasured gift: for anyone suffering an “incurable” illness or who is a caregiver for a loved one; for a college student considering a rewarding career in biomedicine; for scientists who want to protect and enhance their research funding; and for anyone who wants to see government respond to the needs of its citizenry. Chronic disease and disability are a prison: cure is the triumphant escape — wheelchairs should be for temporary occupancy only.

This is a one-of-a-kind book: combining easy-to-understand science, in-the-trenches political warfare, and inspirational stories. It aims to give hope to individuals and families who suffer from chronic disease or disability; to point out how ordinary people can make an extraordinary difference in the battle to ease suffering and save lives through supporting medical research; to share in “people talk” some of the amazing progress already achieved in the new field of stem cell research; to show how even such a magnificent success as the California stem cell program is under constant attack from ideological groups; to offer medical research as a force for international cooperation; to suggest how cure research lessens the need for the mountainous costs of endless care.

Unparalleled background: the author has been involved in virtually every important stem cell battle (state, national, and international) since embryonic stem cell research began. The author works closely with Robert N. Klein, sponsor of the California stem cell program, the largest source of such stem cell research funding in the world. In addition, the author is an award-winning teacher as well as writer, and seeks to entertain as well as educate. His book is not only substantive, but also fun.

The book would be a treasured gift: for anyone suffering an “incurable” illness or who is a caregiver for a loved one; for a college student considering a rewarding career in biomedicine; for scientists who want to protect and enhance their research funding; and for anyone who wants to see government respond to the needs of its citizenry. Chronic disease and disability are a prison: cure is the triumphant escape — wheelchairs should be for temporary occupancy only.

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!”

Reha...

Table of contents

• Cover
• Half title
• Title
• Copyright
• Contents
• Foreword by Christopher Reeve
• Acknowledgements
• Chapter 1 The World’s Deadliest Killers
• Chapter 2 The Naked Face of Hate
• Chapter 3 To Clone, or Not to Clone?
• Chapter 4 Season of Storms
• Chapter 5 The Trial(S) of the California Stem Cell Program
• Chapter 6 When Changing the World, What Do You Do First?
• Chapter 7 Battles With a Friend
• Chapter 8 Time-Lapse Scriptography
• Chapter 9 Ideology, Science, or Bible-Quoting Vampires?
• Chapter 10 Joan of Arc, and the Republican Stem Cell Reversal?
• Chapter 11 Deadly Definitions
• Chapter 12 What are We Fighting for?
• Chapter 13 Suffer Little Children
• Chapter 14 Klein Must Resign!
• Chapter 15 Last Day in the Wolverine State
• Chapter 16 Getting up in the Morning and Going to — Washington?
• Chapter 17 The Boy Who Loved Stanford Too Much
• Chapter 18 Stem Cell Summit, Stem Cell World
• Chapter 19 How Not to Have Sex in a Personhood State
• Chapter 20 Fighting the Killers: Leukemia and Cancer
• Chapter 21 The Thief of Memory
• Chapter 22 The Anti-Science Society
• Chapter 23 Stem Cell Thanksgiving
• Chapter 24 Swimming from Alcatraz
• Chapter 25 Bridge to a New Life
• Chapter 26 Skidding on Ice
• Chapter 27 Helen Keller and Stem Cell Research
• Chapter 28 How to Mend a Broken Heart
• Chapter 29 Why We Can’t Afford Not to Cure Paralysis
• Chapter 30 The War We Must Not Lose
• Chapter 31 In Which I Get Cancer
• Chapter 32 Sickle-Cell Anemia and the Politics of Pain Stem Cell Program
• Chapter 33 Mowgli and the Matrix: A Year in the Life of the California
• Chapter 34 To Whom Goes the Kingdom?
• Chapter 35 The Liver List
• Chapter 36 The Will of Connecticut
• Chapter 37 Champions Find a Way
• Chapter 38 Disenfranchise the Disabled?
• Chapter 39 Adventures in Intellectual Property
• Chapter 40 Spartacus Fights Back Against Stroke
• Chapter 41 Diabetes Going Down?
• Chapter 42 Jamie Thomson, or, How Do You Follow an Act of Genius?
• Chapter 43 Sherley V. Sebelius
• Chapter 44 The Woman Who Would Not be Silenced
• Chapter 45 The Gorilla Gynecologist, or, the Pera-Chen Anti-Urinary-Incontinence Method
• Chapter 46 Turning Over Rocks: The Battle for Paralysis Cure
• Chapter 47 In Memory Still Green: The Passing of Three Giants
• Chapter 48 Invitation to Mexico
• Chapter 49 Of Presidents, and the Valley of Death
• Chapter 50 Little Hoover and the Institute of Medicine
• Chapter 51 Studying the Moon, Looking Through a Straw
• Chapter 52 The Great Nebraska Compromise
• Chapter 53 Stem Cell Tourism
• Chapter 54 The Man Who Could Fly Without a Plane
• Chapter 55 Thief of Lives
• Chapter 56 Singapore, Biopolis, and the Power of the Small
• Chapter 57 Singapore Scientists
• Chapter 58 Fighters Against Parkinson’s
• Chapter 59 International Friends
• Chapter 60 A Texas Miracle, or Thirty-Two
• Chapter 61 The Stem Cell Musketeers of Brazil
• Chapter 62 Adventures in China
• Chapter 63 Professor Forever and the Giant Squid
• Chapter 64 A Double Baker’s Dozen of Disease Team Grants?
• Chapter 65 The Greatest Speech You Never Heard
• Chapter 66 A Stem Cell Mystery: The Resignation of Mahendra Rao
• Chapter 67 Arthritis and the Fifty States
• Chapter 68 Would You Drink from a Fountain of Youth?
• Chapter 69 When Things Go Right
• Chapter 70 Where Did the Money Go? (and a New Year’s Delight at the End…)
• Chapter 71 The End?
• Appendix 1 Interview with Lim Chuan Poh, Chairman of A*Star and Biopolis
• Appendix 2 Interview with Hans Keirstead
• Appendix 3 Interview with Bob Klein
• Name Index
• Subject Index