Tuesday, January 17, 2017

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!”

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