My name is Stephen Sprague and I am personally fortunate to have the opportunity of speaking with you today. In a life before leukemia, I've appeared before lots of committees, but never about matters affecting life or death. Today, I'm here wearing a proud new hat...that of a long-term adult cord blood transplant survivor, and my remarks are much more critical...for those like me in the cancer community, and I hope, for you who have an opportunity to help us now...not with more research, but by supporting proven patient applications.

While you probably can't tell, I'm an aging baby boomer and was already a medical veteran before I got my leukemia diagnosis 7 years ago at age 47. I'm a diabetic and had survived a heart attack and quadruple bypass surgery in 1993. In spite of that, I was totally unprepared for a battle with cancer. This was November 1995. In those days, and even today with new experimental wonder drugs for cancer, chemotherapy only stalled what was inevitable for long-term survival...the traditional bone marrow transplant. "The Cure That Can Kill" as some of us have learned to call it. Since CML is usually a slowly-progressing, manageable cancer, I continued to seek a decent quality-of-life while mentally preparing for transplant...the only option. For whatever reason, in May 1997, only 18 months after my initial diagnosis, I found myself in blast crisis, the end stage of this disease.

After a rigorous few months in the hospital, my oncologist, Dr. Andrew Pecora, got me into my first remission while we began what would quickly become a frustrating marrow donor search. I soon discovered that less than a third of those seeking transplant have a matching sibling, the best and most obvious donor source. Since I was an only child, I needed to find an unrelated matching donor if a transplant were to even be an option for me. To make a very long and complicated story short, I was not one of the lucky ones to find an acceptable match in any of the marrow donor registries. "Enjoy your remission for as long as you can and get your affairs in order" I was told, "while we keep looking and try to figure something else out."

This sad predicament is still an all-too-familiar one for many adult leukemians. Even now, far too many patients referred for a primary marrow donor search are unable to actually proceed to transplant due to the complexity of antigen matching, as well as the problems inherent in tracking down and eventually collecting the matching marrow from a hopefully still-willing and still-available donor. Fortunately for me, there soon came a series of events that, to this day, I find difficult to understand or describe.

Just as I was beginning to lose my remission, my doctor, who directs Hackensack (NJ) University Medical Center's prestigious Stem Cell Transplant Program, was planning to begin one of the very first clinical trials for end-stage adult CMLers using neonatal stem cells obtained from umbilical cord blood. And equally astonishing, a perfect cord blood match was found for me within days, from the New York Blood Center's world-renowned Placental Blood Program, as it was known at the time. And in life-or-death struggles like these, days matter. Incredibly, some still-anonymous New York City mother had decided to do what few new mothers were doing back in those days...donating their newborn's cord blood to a public cord blood bank. It was that donation from a newborn baby girl that happened to be my one and only match.

I entered the hospital on October 30th, 1997. Magic and miracles happened, including a pioneering treatment using cord blood. And by the grace of God, I was discharged 40 treacherous days later, December 8th, 1997, with a new, working immune system and no trace of leukemia. And no hair. Fast-forward a bit and here I am today...5 years, 7 months and 12 days later...with 100% donor cells, all-female chromosomes just like my donor, completely cancer-free and in relatively good health. And still not much hair.

In my post-transplant activities as a patient advocate volunteer, I have come to learn a lot of things...about myself, about life and death, and about perspectives, appreciations and priorities. And most importantly, about hope.

My point is simply this. Part of that hope for desperate patients seeking transplant...patients like I was...involves options. Heading down the transplant trail is a risky endeavor, even in the best of circumstances. But that critical first step can't ever be taken without first finding the right stem cell match.

As you will come to appreciate, umbilical cord blood remains a largely untapped, non-controversial and readily available alternative source of non-embryonic, neonatal stem cells. That's the good news. That most of it continues to be trashed as medical waste instead of finding its way into a public cord blood bank remains the problem. A solvable problem. Registering the good intentions of prospective volunteer marrow donors has been one solution to providing stem cells to patients in need. Collecting and preserving the actual cord blood thanks to new parents willing and eager to donate at the time of delivery may be a better one. Or at least another viable option.

As cord blood finds its way into the medical mainstream, it is my personal hope, shared by my cancer companions...the lucky ones as well as the less fortunate ones who have died searching for their elusive marrow match...that an infrastructure to assist patients nationwide can be created, regulated and funded to take better advantage of this natural and precious "gift of life." If more of those estimated 4 million new parents each year have a better opportunity to donate their newborn's cord blood, an important new donor bank can be created quickly, conveniently, without pain, and without controversy. And it remains my privilege to serve as living proof of the promise of cord blood for the adult leukemia community. Although we think of it as a children's disease, 90% of all leukemia cases are diagnosed in middle-aged adults. But regardless of age, cord blood is a proven alternative for saving lives that needs your support to become more readily available.

Thank you for the opportunity to share my concerns with you and I would be happy to answer questions at the appropriate time.