Stephen Sprague Presentation at “A Toast”

Date: 06/20/2006

A Toast to Adult and Cord Blood Stem Cells: Helping Patients Now and in the Future

Senate Russell Office Building 385

Stephen Sprague

It’s certainly a privilege to join you all today. My name is Stephen Sprague and more than 10 years ago, I was surprisingly diagnosed with leukemia—CML. Back then, “stem cell” were not common household words. You didn’t hear it…or read about it. And people certainly weren’t arguing about it.

For me, it was cord blood that played an unexpected role in my treatment—a new experimental SC source that provided me with new hope—just when I had run out of every available option.

Less than two years after my initial diagnosis, I found myself in desperate need of a stem cell transplant. I had no siblings or unrelated marrow donor matches available to me and was sent home to prepare for the inevitable. Fortunately, I found myself in the right place/right time and in 1997, I became one of the first “full-sized” adult patients to benefit from a pioneering CB SC transplant. And the rest, as they say, is history. There were very few of us back then. Look how far we’ve come! There are now thousands of other patients who have been treated like me. And there is a growing list of “adult SC” applications giving real, honest hope to a patient community desperate for novel SC treatments.

While this is good new for some, for others, this prolonged stem cell “fight” has been counter-productive–draining precious energy and resources from SC treatments proven to work in actual patients. And the debate continues.

I have come to truly appreciate that patient advocacy is a frustrating process. For example, with the strong leadership and support of Senator Brownback and Congressman Smith—two champions of cord blood stem cell applications—Congress has finally adopted legislation to help build a larger public inventory of donated CB units. An inventory of high-quality, ethnically-diverse units necessary for many adult stem cell applications. This was a three year effort on an issue with no controversy, no disagreement and one in which all parties were in favor. Building such an inventory will allow many more patients the opportunity to move a step closer to transplant and on behalf of the transplant patient community, we extend our sincere gratitude to you both.

I also want to take this opportunity to share a few personal thoughts–as time permits—from the unique perspective of an early—some might say “miraculous” cord blood stem cell recipient:

First, I suggest to you that when a healthy person suddenly finds him/herself part of our patient community—a place no-one ever wants to be—personal perspectives change—quickly and often dramatically. Earlier firmly-held moral and ethical beliefs become challenged by serious threats from debilitating and often deadly diseases. Those still in good health who remain outside this patient community need to understand these patients’ dilemma and concerns over how this stem cell controversy can be resolved in their best interests. These are not irrational or immoral people. They’re just frustrated, perhaps over-promised and misled with the thoughts of immediate certainty of the stem cell research they were counting on. All this at a time when encouraging news is in short supply. They need to be heard in this debate and deserve your compassion.

Second, in my personal view, this lingering embryonic stem cell “bruha” has now unfortunately spun totally out-of-control. Powerful competing, conflicting and self-serving interests—medical science and research—partisan politics with their red and blue persuasions—serious bio-economics—all these are raising havoc within an impatient patient community—desperate for the perceived promises of instant cures of a myriad of most dreaded diseases affecting millions. I suggest to you that this is an “unhealthy” climate in which to conduct meaningful stem cell dialogue or reach compromise and consensus.

And finally, this may now be the appropriate time for a reality check and a shift in focus. We obviously have two competing stem cell views—embryonic and adult. One is non-controversial and continues to work successfully in an increasing number of proven patient stem cell applications. The other is passionately controversial, highly speculative and may never work at all. I believe we need a shift–from what I call a “Big Bang” embryonic mentality—the quickly-made promise to “cure everything …now”—to a more reasoned and practical approach with the focus on expanding “adult” stem cell applications—right here in this country.

This stem cell controversy may ultimately sort itself out—but only with less anger, less hype and rhetoric, lowered expectations and ongoing and validated medical science to support claims of success. This, I believe, can become a win-win scenario—at least for the patients who deserve nothing less and will end up paying for less with their lives. All of the patients you have heard from today are here willing to be living examples of proven adult stem cell technologies. We are not wishes, hopes and promises of possible cures—we are the proud and fortunate results of stem cell promises kept.

You might also wonder why we do this. As you’ve witnessed, for some, this is a painful process to relive publicly, often horrifying medical experiences. We do this to clearly demonstrate to you and those who have firm belief in the promise of adult stem cells–in our own voices– the importance of hope as well as the courage to never give up that hope. Our support helps the next patient. It’s our way of “paying it forward.” Your support helps to bring this message to those whose lives may depend on hearing—and believing it.

Thank you for this opportunity to speak with you.