Testimony before the House Government Reform Subcommittee on Criminal Justice, Drug Policy and Human Resources by Nathan Salley

Date: 07/17/2001

July 17, 2001

My name is Nathan Salley. I am 16 years old and I will be a junior next year at Faith Christian Academy. I live with my parents, Mark and Leslie Salley, in Arvada, Colorado. My father and mother are with me today.

I am honored to represent some of the children that proponents of embryonic stem cell research insist they are trying to save. Yet embryonic stem cell research did not save me-cord blood research did. I am living proof that there are promising and useful alternatives to embryonic stem cell research and that embryos do not need to be killed to achieve medical breakthroughs.

My story begins at the age of eleven when I was ill for several months. My mother took me to doctors, who told me that I was the victim of tonsillitis, fatigue and infections. They were dead wrong. When – at my mother’s urging – I was finally checked for mononucleosis, they found something much worse. The doctor who called with the results of my blood test told us to get to the hospital immediately.

On March 4, 1997, I was diagnosed with Acute Myloid Leukemia. The disease was at an advanced stage by the time of diagnosis.

At age eleven, I knew nothing about leukemia. It was a terrible time, but I always tried to look on the bright side. Soccer teammates put my number “2” on their jerseys for the remainder of the season. Friends were very supportive, but the cancer treatment was awful. Cranial radiation exhausted me and chemotherapy caused me terrible nausea.

For eighteen months, I had chemotherapy for 86 to 94 hours each month and endured repeated spinal taps and bone marrow aspirations to check my progress. I lost my hair and appetite, but I tried hard to do as many things as I could – for life to be as normal as possible. Between chemotherapy treatments, I played soccer and kept up with school.

Since being diagnosed more than four years ago, I have spent nearly six months as an in-patient at the hospital and made nearly weekly visits to this day as an out-patient. I had to be homeschooled at the end of sixth grade, for all of seventh grade, for part of eighth grade and for part of my freshman year. I missed out on so many things with my friends that I could not begin to recount them. And, just when I thought the treatments were over and I was cured, I had a relapse.

Doctors informed me at age fourteen that I needed a bone marrow transplant. They gave me three options: receive the bone marrow from a donor relative, an unrelated donor, or cord blood. We found that nobody in my family was a match. We were ready to go ahead with a transplant from an adult donor who had what they call a 5 of 6 match with my proteins. However, at the last minute, a 6 of 6 matching cord blood unit from Spain became available.

Cord blood transplants were becoming more widely used by 1999, but were still experimental. Physicians assured us a cord blood transplant was my best chance for life and would reduce the likelihood of rejecting the transplant. After prayerful consideration, my parents and I followed their advice. Dad signed consent forms for me to participate in the procedure, requiring us to acknowledge that “umbilical cord blood transplantation has been performed mainly in small children and one of the purposes of this study is to determine whether it can be performed safely in larger people.”

At fourteen, I was among the oldest children to receive a transplant from a small umbilical cord. More cells were going to be needed than were available in the cord blood unit. So the doctors told us about a second experimental procedure they felt should be used to expand the number of donated cord cells. We agreed to this procedure and signed more medical consent forms.

The scariest one said, “You are being asked to participate in a research study involving an investigational technique where a portion of your cord blood transplant will be treated in a laboratory before it is given back to you. The goal of this study is to determine whether we can speed up your marrow recovery by increasing the number of cord blood-forming cells in the laboratory before you receive them . . . . Your doctors have shown that if cord blood cells are treated in the laboratory for 10 days with vitamins and growth factors, the number of stem cells which produce marrow recovery is substantially increased.”

Before the transplant could take place my doctors had to completely kill my own leukemia-producing marrow with three days of total body radiation, followed by more intense chemotherapy. Then, the transplant took place in two phases. I received about 60 percent of the donated cord blood cells on June 29, 1999 when they arrived from Spain. The remaining cells were sent to the lab to be expanded. I was transfused with these cells ten days later on July 9, 1999.

It was an agonizing wait for my blood counts to begin to recover. I could not eat for two to three weeks. Thankfully, I am in complete remission today. Regular testing continues to show no leukemia present in my body. The transplanted cells have built a brand new bone marrow system for me.

When my transplant was performed by the doctors at Children’s Hospital in Denver, I was just one of seven patients to receive a cord blood transplant in 1999. There have been just 36 total cord blood transplants at that hospital since the first one in 1996.

As a result of this groundbreaking procedure, I am proof that the medical community does not need to destroy life to save it. I am told that the same cord blood stem cells that saved me are likely cures for other life-threatening diseases. Differences of opinion exist about whether research using embryo stem cells may also yield medical benefits. But no one disputes that such research destroys embryos.

I am not a doctor, scientist, or theologian. And I am no more deserving than any other of the thousands of cancer patients and cancer survivors to have the opportunity to speak here. But, speaking as one cancer survivor who benefited from cord cell treatment, it does not seem right to me to terminate living human embryos based on mere speculation that they could lead to cures — when obvious alternatives are not yet exhausted.

All human life is “fearfully and wonderfully made.” My life is no more valuable before God than the life of an embryo. Everyone wants to live a complete and healthy life, but I do not believe killing a life to save a life is right. Who, besides God, knows what people embryos may become? What we do know is that performing research on a four-day old embryo will ensure that it never becomes a five-day old embryo-much less a 30-year old actor, 40-year old scientist who discovers a cure for alzheimer’s disease, 50-year old Congressman, or 91-year old former President.

Somehow the opportunity came to me from among countless others to be here today and tell my story. I have benefited from and participated in research on umbilical cord stem cells.

· Am I thankful to be alive today? Yes.
· Am I thankful that brilliant doctors and researchers discovered a cure for my disease? Absolutely.
· Would I want embryos unnecessarily killed when alternative research methods exist today? No.

So, I urge this committee-and President Bush-not to allow taxpayers’ money to fund destruction of live human embryos.

Thank you.