To Steal a Dream: Anger Builds at World Stem Cell Summit

10/06/2010 10:38 am ET | Updated May 25, 2011
  • Don C. Reed Sponsor, California’s Roman Reed Spinal Cord Injury Research Act of 1999

Last night as I sat in the beautiful Detroit Marriot Renaissance Hotel, listening to speakers at the World Stem Cell Summit, I was torn between joy, agony, and rage.

Joy as the scientists detailed the step by step progress they had made toward cure of chronic disease and disability;

Agony because a million Americans are still imprisoned in wheelchairs, while their families live in desperate exhaustion trying to protect them;

And rage because our hope for cure may be stolen by political interference.

I could feel the mood of the conference change. At first, the hundreds of us were caught up in seeing old friends and making new ones, going from booth to booth seeing the latest advances -- oh, they can use magnets to sort stem cells, that looks cool -- but then the conversation would shift, inevitably, to the Sherley vs. Sebelius case, which may cut off federal funding for embryonic stem cell research.

Everyone was trying to be polite about it: hoping that reason and justice would prevail in the courts.

One lawyer friend pointed out an error I had made in a previous column about Judge Royce Lamberth, who disqualified the patient advocate group CAMR from participation in the trial, on the grounds of insufficient time for the plaintiffs (the people suing to shut down the research) to respond, saying the Judge was absolutely right in that point.

So, on the slim chance Judge Lamberth is reading this, my apologies, sir, for that misinterpretation of your action.

But that changes nothing, if the research which offers hope of cure is shut down for political reasons.

People are starting to get angry.

Laura Jackson, a beautiful young lady in a power wheelchair, received the World Stem Cell Summit Inspiration Award. She spoke briefly, thanking the scientists for their hard work, and for Bernie Siegel's organizing the event. She smiled at us, and cheerfully rejoined her family.

But as the father of a paralyzed young man, it broke my heart to see all the machinery she has to wear just to keep breathing, and to move. And it made my fists clench.

If we can cure her, with the use of microscopic tissues that would otherwise be thrown away, should we not do that? Are we not morally obligated to do so?

And Detroit, magnificent Detroit, struggling up from a grim recession, is doing everything right as they switch from being Cartown USA to a globally respected stem cell research "corridor", as they call it, three great colleges--Michigan State, Wayne University, and the University of Michigan, working together--building a new industry.

This revitalization began in 2008, when Michigan patient advocates overthrew some of the cruelest anti-research laws in the nation, when scientists could literally have been thrown in jail for ten years and fined ten million dollars for advanced stem cell research.

Today, Michigan is moving toward a new and sustainable economy, based on biomedicine.

That too is at risk.

Embryonic stem cell research is the foundation of the biomedical economy. It is already being used to test the toxicity of new drugs. Instead of injecting a new drug into a person, and just seeing what happens, pharmacologists can use a dish of salt water and stem cells.

New breakthroughs? Fine, we welcome them. But just as adult stem cells were studied for more than half a century and we still don't know everything they can do, even so it will take time for the latest version of stem cells to be tested--and they will always need to be tested against embryonic stem cells.

What if we can regenerate healing of wounded soldiers? Should we not do so?

My wife Gloria and I are still waiting for the biopsy results on her possible breast cancer; if embryonic stem cells offer us a cure for cancer, are we going to turn it down?

If Republican activist judges declare federal funding of embryonic stem cell research to be illegal, and Republicans in the House and Senate follow through on their 2008 platform promise to ban all embryonic stem cell research, public or private, we will all pay the price.

In personal terms, for sixteen years I have worked to find a cure for my paralyzed son, Roman Reed.

A law named after him (the Roman Reed Spinal Cord Injury Research Act of 1999) provided initial funding for the treatment Geron is taking to human trials. At the Summit, Geron CEO Tom Okarma showed a slide of the 28,000 pages of documentation provided to the FDA during the ten year struggle to prove embryonic stem cells were safe enough to try.

Now, at last, the human trials of embryonic stem cells have begun.

We are so close.

But unless we in the patient advocacy community can encourage Congress to pass a stem cell research protection act the dream will have been stolen.

The "lame duck" session after the election may be our only chance to pass such a bill.

It will be difficult, of course, like everything of value.

But it is worth the doing.

Congress passed such a bill twice before, and a Republican president vetoed it.

Probably Republicans will filibuster a bill brought by cancer-surviver Arlen Specter, or the Castle-DeGette bill, or Tom Harkin's bill, whatever is chosen.

But it must be done, if America's leadership in stem cell research is to be allowed.

California and the few other states that fund research cannot fill the void. Proposition 71 was developed because of exactly this situation, that politics could block research. But the problem of chronic disease and disability is too huge; last year America spent more on chronic illness ($1.65 trillion) than on all federal income taxes ($1.2 trillion) combined. Cure is the only real way to lower medical costs.

And if the anti-science element in the Republican party succeeds?

I will keep trying, of course, no matter what, until the end of my days. I have been studying Chinese for several years, preparing for exactly this eventuality. If America gives up its stem cell leadership because Republicans would rather win political points than heal people, I will still hope for the cure to come from elsewhere, most likely China.

But what a loss that would be. Without America's entrepreneurial genius, the world's quest for cure will basically lose a generation.

Eventually, research in other countries will make the cures happen, and America will play catch-up ball, and future generations look back on ours as an age of ignorance.

The Republican war against embryonic stem cell research will be remembered as a thing of shame--how many people will have suffered, and prematurely died, needlessly?

I am 65 now, and if I make it to my father's age, (he is still playing tennis at 87) I fully expect to see my son walk before I leave this earth.

But I do not think that will happen, if embryonic stem cell research is denied us.

It is not right to steal a dream of hope.