Text of Don Reed's Comments

Here is the full text of comments from patient advocate Don Reed on the current state of the California stem cell agency. He offered them as part of the reporting process for the overview of the agency which can be found here.

THE CALIFORNIA STEM CELL PROGRAM: A Patient Advocate’s Viewpoint

By Don C. Reed

In its ten years of active existence (lawsuits blocked its funding for the first two and a half years) the California Institute for Regenerative Medicine (CIRM) has saved lives, eased suffering and brought the realistic hope of cure to millions.

Children with the “Bubble Baby” disease have had death sentences commuted and are now living healthy lives. Paralyzed young men have recovered hand and arm function. Blind people have begun to see outlines and colors, where there was only darkness before.

 It is a quiet triumph: not flashy or fancy: but every step is carefully documented, reliable, repeatable, so it can be built upon.

When CIRM began, the obstacles against us were so tremendous one scientist predicted we would be lucky to bring even one stem cell therapy to FDA-approved clinical trials. Instead, more than two dozen conditions have either begun human trials, have completed them or are expected to begin within six months.

I remember twenty-two years ago, when my son Roman was first paralyzed. The doctors gave us no hope, saying there was nothing that could be done. Today, there is plenty we can do, and California is doing it.

Thanks to the wisdom of the voters who said yes to Proposition 71, the citizens’ initiative which became our state stem cell program, CIRM has challenged many chronic diseases and disabilities--and is making steady progress.

As a patient advocate, I am eager for cure. But I know every step of the way will be difficult, as we systematically attack “incurable” disease. We need the faith of the farmer, who plows and plants his field, knowing it will take time for the seeds to open underground, and fight their way upward through the soil, to the sun.

Already, we are seeing the first fruits of cure: like the stem cell device to be implanted under a diabetic’s skin, after which it will distribute the insulin required.But I believe the best is yet to come. 

As legendary entertainer Al Jolson once said, “Hang onto your hats, folks—you ain’t seen nothin’ yet!”

Results Heralded in Asterias hESC Clinical Trial

Two prominent stem cell patient advocates are hailing as a “giant leap forward” the initial results of a clinical trial involving a human embryonic stem cell therapy for spinal cord injuries.

Their remarks came in the wake of last week's announcement by Asterias Therapeutics of Menlo Park, Ca., that the trial had cleared its first safety hurdle. Asterias picked up the trial from Geron, which began it in 2010. Asterias and its parent, BioTime of Alameda, Ca., purchased Geron's stem cell assets after Geron abandoned the trial in 2011.

Asked for comment on the Asterias announcement, Roman Reed of Fremont, Ca., who was honored for his advocacy work in 2013 by the Genetics Policy Institute, said,

“Having started this groundbreaking research with Roman's Law funding of pioneer Dr. Hans Keirstead, I am extremely excited about the possibility of a paralysis treatment.

“My goal is paralysis cure. This research brings that dream closer to fruition for all of my paralyzed brethren. Onward & Upwards!”

Then California Gov. Schwarzenegger (left) with Don Reed
(center) and Roman Reed at 2007 stem cell agency press
 conference
AP photo

His father, Don Reed, also of Fremont and whose advocacy work along with Roman's led to passage of California's Roman Reed Spinal Cord Injury Research Act, said the search for a spinal injury stem cell therapy dates back some years.

 A major moment came, the elder Reed said “with the famous paralyzed  'rats-that-walked-again'” feature on '60 Minutes,' which made Christopher Reeve say, 'Oh, to be a rat today!' Today, the dream he embodied is a giant leap closer.”

Reeve was an actor who was famous for his screen portrayal of Superman and was paralyzed as the result of a horse-riding accident. He died Oct. 10, 2004, about one month before the California voters created the state's $3 billion stem cell agency.

Roman Reed, who is a candidate for the California state Senate in next week's election, is paralyzed as the result of a football injury to his spine in 1994. He coined the California stem cell agency's motto, “Turning stem cells into cures.”

Asterias is expected to receive a $14.3 million award from the California stem cell agency on Thursday to help continue the trial.

Time to Let Lawmakers Know What They Need to Do

A UC Davis stem cell researcher has joined in the campaign to change the law that resulted in the court order temporarily halting federal funding for human embryonic stem cell research. He is looking for more than a few good supporters.

Paul Knoepfler has posted on his blog a tool that makes it easy for others to join him and write their Washington representatives seeking immediate repeal of the law. It allows readers in any state to look up their elected officials and let them know what needs to be done.

Knoepfler and Don Reed, a longtime patient advocate in California, should get together. Reed also has a blog in which he seeks to create a stem-cell friendly environment nationally and in California. Reed has not yet posted a similar pitch but may well do so.

Reed has been lobbying elected officials for years. His efforts were key to passage in California of a 1990 measure that funded research linked to Geron's spinal cord clinical trials.

That law, however, is in danger of fading from the books. The law is named after his son, Roman, who was paralyzed some years ago in a football accident. Roman also has lobbied for stem cell support and came up with the slogan of the California stem cell agency – “Turning stem cells into cures.”

On his blog, the elder Reed is appealing for folks to write the governor supporting the legislation, which is now on his desk.

Reed writes,

"This law paid for the first state-funded embryonic stem cell research in America, re-insulating damaged spinal nerves. Laboratory rats so badly paralyzed they could only drag themselves are scampering now; that study goes to human trials with Geron. The same research may help cure spinal muscular atrophy, (SMA, a vicious condition which kills children, often before the age of two), multiple sclerosis (MS), and other disorders.

"'Roman’s Law' has helped train new scientists with fellowship grants, and assisted veterans to develop new approaches, from a variation of the petri dish to pioneering new methods of rehabilitation and repair. In addition to 175 published scientific papers, two patents pending which may advance the biomedical industry, and several major scientific breakthroughs, our research brought new money to California."