STEM CELL RESEARCH -- (Senate - June 29, 2006)
Mr. BROWNBACK. Mr. President, I stand to deliver some good news today to the Senate and hopefully contribute to the debate we are going to have probably in July on the overall issue of stem cells, embryonic stem cells, human cloning, adult stem cells, and cord blood.
I wish to start by saying I think everybody is of good heart and good mind in this body and that they want to try to do something to help people in this country. While we have some differences of opinion on embryonic stem cells and on human cloning, there is strong bipartisan support in the adult stem cell and cord blood area.
The differences come down to the basic view of the youngest of human life. This is a long debate. It has been going on for some time. We have differences of opinion. I view human life as sacred at all of its stages and all of its places. Period. It is unique, it is beautiful, it is a child of the living God. It deserves our respect and protection under law at the very earliest stages of life and at the very latest stages in life. It is life in this country and a life in other countries. It is life seeking to come to this country in whatever form it may be. This life is unique and sacred.
We can try to divide it under law. We can say it is property at this stage of life; it is not worth living at that stage of life. All of those, I think, are false distinctions. Life is sacred, period, per se because it is human and it is sacred, period, because it is human. That is the point of view from which I come. That is the point of view from which I think a lot of Americans come.
When people think about it, when they look at this issue they say: How else would you divide a baby? It is pretty hard to do unless you start where life begins and you end where life ends and you don't draw distinctions in between.
Others are willing to draw that distinction in between and say a human life is not sacred, per se, at certain early stages, or if it is so decrepit at other stages of life. I think those are false distinctions. I don't think they stand the test of science. I don't think
they will stand the test of time. I don't think they will stand the test of reason if one really thinks it through.
That is really where we get to the point of distinction on this debate, on human embryonic stem cells, on cloning humans for stem cells. Scientifically, it may be doable. Ethically, is it moral? Is this human life a person or a piece of property? In our jurisprudence system, they are one of the two: They are either a person or a piece of property. Everything in this room--the Presiding Officer is a person; what he has on is property. People in this room are people, everything else is property.
What is the youngest of human life? Is it person or property? We have had this debate before in this country. We have looked at it; we have drawn distinctions. At points in time, even in our Constitution, we have said a person was only three-fifths of a person, and yet we knew at that time: How can you be three-fifths of a person? That didn't stand the test of time and reason then, and it doesn't stand the test in this country now.
Some will say that the youngest of human life is property and at some point in development it becomes a person. Yet in our jurisprudence system, we don't recognize the transition that you can go from property to personhood and, if so, where on Earth would you draw that line? When would it happen?
The biology is quite clear on this point. If you start out a person, you end up a person. If you start out a human being, you don't become a plant. If you start out a human being, you don't become a desk. If you start out a human, you end up a human. The biology on this is clear. If you are a human embryo and you are given nurture, you end up, by anybody's definition, a full-scale human being. You don't transition. You don't start out as a piece of property or an egg that is going to become an eagle and end up a person. It is one person.
At one point in time, we have all started out as an embryo. Whether you are SAM BROWNBACK, the Presiding Officer, or anybody in this room, we all started out being a human embryo. We didn't start another way. If you destroy us at the earliest stage, you never end up with us at this stage. That is a basic fundamental of the argument.
It is an old, old, old debate for human societies. We have had this debate. Typically, in fighting around the world, people try to dehumanize the other side.
I remember watching a film on Rwanda, ``Hotel Rwanda,'' about the Rwandan genocide. I was just in Rwanda last year and in the Holocaust Museum. The one side persecuting the other side, killing nearly 800,000 in 3 weeks, in the very typical fashion of human beings demonizing the other side and calling them less than human, they were subhuman--they were roaches is what they actually referred to them as.
One can look at old war propaganda and typically one side tries to demonize the other side, calling them something less than human, they are subhuman. That is a very old human debate about whether this is really a person.
The truth is, the debate never stands up under any examination. Of course, the Hutus and Tutsis are humans. Of course, in our earliest Constitution, a slave was treated as three-fifths of a person; they are a full person. They are entitled to personhood. They are entitled to legal status in this Nation.
Of course, any time in the history of mankind when we have deemed somebody less than a full person, we have always lived to regret it, and we always said later on: Wasn't that a horrific episode in human history where somebody was treated less than a human?
Now we are back at that old debate. People are of different minds. They are not of ill will toward anybody. Many are seeking cures to very difficult diseases, to very difficult problems and human maladies and saying: If we can only go here, if we can only research on human embryos that are just frozen; they are not going to come out of the Cryovac; they are going to stay frozen; if we can only do that, if we can just take an egg and fuse it with a cell from my body and create a clone just for a little period of time, we are going to be able to solve all these human maladies; we are going to solve cancer, and we are going to fix Parkinson's disease, and we are going to solve spinal cord injuries.
Then, it comes back, back, back to the same old debate: What is the human embryo that is frozen? Is this a human embryo created by the cloning process? Is it a person or piece of property?
People of good will differ on that division. It is an old debate, and I think the only place to stand is that this is a person and deserves our respect.
That debate is renewed in this bioethics issue. We have been going at it about 6 years now. In August of 2001, the President articulated a strategy of funding both embryonic stem cell research and adult and cord blood research, funding both of them. We have since that time funded embryonic stem cell research to the tune of half a billion dollars, $500 million. So this isn't something people can say we haven't done. We have. Those are Federal funds. No private or State money is included in that money. This is just Federal money, half a billion dollars.
When we started this debate 6 years ago, I stated that for us to research on young human beings is illegal under our law, immoral under our rationale, under our legal system and, really, the law we know in our hearts and unnecessary because we have another way. We can go through adult stem cell work, we can go through cord blood work, and we can come at conclusions that will be successful in treating these human maladies.
The illegal and immoral remain today. We do not allow people to research on the youngest of human beings. It is immoral how you treat the youngest of human beings because if you destroy me at that stage of embryo, I never get to become a full-scale human and realize the potential I have or other people have.
Today, I want to emphasize the unnecessary part of this debate. When we started this debate in 2000, they said there was a lot of promise with adult cord blood, but we don't know if you are right. We actually think we are going to be able to come up with conclusions and solutions using embryonic stem cells or cloning, but you can't come up with them using adult stem cells. There is not enough malleability. They are not what they call in the terminology, pluripotent. In other words, if it is a nerve adult stem cell, it can't make bone. It can't make fat tissue.
It turns out there is a lot more pluripotency or plasticity to these adult stem cells than originally thought, to the point where we have 70 peer-reviewed publications, treating 70--we just celebrated this 2 weeks ago--70 different human maladies with adult stem cells or cord blood.
My good news today is on the illegal, immoral, and unnecessary, we now have a lot of information on the unnecessary side of this debate so that we can go forward full scale in saying we are going to successfully treat these human maladies, and we have 70 treatment areas. Some of these are nothing short of miraculous.
I have a very busy chart here, but that is because this is very busy subject. This is a chart indicating 70 current human--these are not animals--human clinical applications using adult stem cells today. These are the various areas: anemias, autoimmune diseases, bladder diseases. We now have people growing bladders from their own stem cells, taking them out of the body--I believe this is a Florida researcher--putting them on a skeleton and then growing artificial bladders so that people, instead of having pouches on their side, can now have their own bladder grown. This is really taking place.
Cancers, cardiovascular: I want to talk about a group having their hearts regenerated by their own stem cells, but will save that for another day.
Immune deficiencies, liver diseases, neural degenerative diseases, including spinal cord injuries--I will talk about a specific example today: a young lady walking again with the use of braces.
Ocular, wounds and injuries, and metabolic disorders: Those are the general categories that I want to put forward to show the unnecessary side of embryonic stem cells. This is a good news topic with which we can move forward.
I have been challenged by some of my colleagues about the scientists who oppose embryonic stem cell research. I have submitted a list of 57 scientists and doctors for the RECORD in a previous speech who oppose destructive human embryonic stem cell research--oppose it. Embryonic stem cell research is not the right way to go, as a moral issue, for a number of reasons, but there are also a number of reasons why it is unnecessary for us to move forward in this particular category.
There is also the problem--and we saw this on the use of tissues from aborted fetuses, the fetal tissue debate, and, unfortunately, when you use these young stem cells, embryonic stem cells, they tend to form tumors. Embryonic stem cells are very fast-growing, and they form tumors instead of the type of tissue we want. They too frequently are uncontrollable, and they will form tumors. That continues to be the problem in that particular area.
I want to point out this chart to my colleagues regarding this issue. It is not necessary. It is unnecessary for us to do embryonic or cloning research. On the moral issue, it is illegal. But it is also unnecessary because we are getting human treatments to the very things my colleagues said that we needed to do embryonic stem cell research for and that they say we needed to do human cloning to get all of these cures. I am saying it is not necessary. We don't have to go that route, because we are getting the treatments using this ethical route.
So we have this big ethical debate and quagmire, and we have a legitimate route with adult stem cells where we are getting successful treatments for people. Why would we engage in and go the unethical route when we have this big debate and divide? Why would we not just go very aggressively where we are getting human clinical trials with adult stem cells, especially when we are not getting any in the embryonic area? Why wouldn't you fully engage that and say, Well, OK, then we don't have to engage the moral debate. We don't have to say somebody is subhuman and to get to a point in our research. We can say we have a legitimate route to go.
Now I want to talk about the good news highlights here. I want to put up some real patient stories for my colleagues. We had a press conference last week where we had five individuals independently treated with adult stem cells or with their cord blood. This is umbilical cord blood from mother-child that has been saved and preserved and people are being treated successfully in these areas.
I want to put up a picture of Ryan Schneider from Batavia, IL. This is a miraculous story. A beautiful Christmas picture you can see here. It is a picture of him last Christmas, taken just 10 weeks after Ryan's stem cell treatment. There is already a noticeable improvement that he has. This is a young man who has an incredible story. I met him last week and his parents, and I want to say God bless him to him and his parents who really fought through a tough problem of cerebral palsy with him.
His medical problems began at birth. His parents, Mary and Steve, noticed that he was having difficulty with feedings. He was falling behind in his motor skills. His mother is a very sensible woman. She heard the usual arguments of, ``Well, every kid is different, let's wait and see.'' But based on her experience, including raising Ryan's older sister, Katie, his mother knew that something wasn't right.
By the age of 2 he only had two words and he was not gaining weight at all. She writes:
Pointing, whining, and screaming were his only method of communication. I had him evaluated through the early intervention program and he started speech therapy. So she starts working.
Nine months later he had only gained 1 pound, and after he started speech therapy he spoke only 40 words with no sentence structure, and only close family understood the words.
His upper body strength was weakening. His hands were in fists most of the time. It hurt him to straighten out his hands and arms. It is the little things that only a parent would notice that set the bells off ringing. I presented these concerns to Ryan's pediatrician who referred us to a neurologist.
Having five children, I can just see this developing, and I can see a mother looking at this child and knowing something is not quite right here.
On July 21, 2005, we got the diagnosis of cerebral palsy. My husband and I felt like we had been punched in the stomach. Who wouldn't, as a parent. Ryan Schneider was diagnosed with cerebral palsy, a disease that affects close to half a million Americans.
Mayoclinic.com describes cerebral palsy as: a general term describing a general group of disorders which affects the child's ability to coordinate body and movement. These disorders are caused by damage to a child's brain early in the course of development. Damage can occur during fetal development, during the birth process, or during the first few months after birth.
The group of disorders range from mild to severe. Physical signs of cerebral palsy includes weakness and floppiness of muscles, flaccidity, and rigidity. In some cases neurological disorders such as mental retardation or seizures also occur in children with cerebral palsy.
This doesn't sound like something you would want to confront in your family. Mayoclinic.com also cites that it is not curable--is not curable.
Well, the Schneider family has a story to tell today. Thanks to their persistence and the work of Dr. Joanne Kurtzberg at Duke University, young Ryan has a new outlook on life. Thanks to the amazing work of cord blood adult stem cells. Ryan's mother, on the birth of Ryan, saved the cord blood. That is something I would urge anybody who is watching or thinking about it, to save the cord blood. This is a valuable asset.
Ms. Schneider continues about what she did:
The light went on the morning following Ryan's diagnosis. I sat up in bed, looked at my husband and said, the doctor said brain injury. We saved his cord blood. I wonder if they are using it to treat cerebral palsy.
This is the day after. The mother sits up in bed: We saved it. What can we do?
After days of net researching and many phone calls to leading researchers in stem cell therapy, I found very little hope or information and a lot of, ``No, I won't do the transfusion.'' No one would give my son his own cord blood. You can get donated blood products from strangers in time for surgery or trauma. This is absurd. I called Dr. Harris at the cord blood bank where Ryan's stem cells were banked. He suggested I get in touch with Dr. Kurtzberg at Duke University.
I have had Dr. Kurtzberg in to testify--an amazing lady, great stories, and she works with these impossible cases. Remember, cerebral palsy was incurable. Was--was incurable.
She agreed to do the transfusion, and the transfusion took place on October 11, 2005. Given this opportunity, I set up a protocol system of my own. Pre- and post-infusion evaluations and progress monitoring is being done by Easter Seals. I requested extensive metabolic and chromosomal blood work to be done to rule out any other possibilities with his pediatrician.
So this is a mother working with this doctor saying, OK, we are going to really measure it and see if this is what is happening. Ryan's mother continues:
My thought was if this works for Ryan, it could change his life and the lives of many other children in the future. Although my efforts were applauded, this should not be the job of a parent, but of the medical community and the Federal Government to allocate research dollars. Until this is a proven treatment, insurance companies typically will deny benefits, leaving a huge financial burden on the family and precious few places to receive hope.
Six months post-infusion, the progress Ryan has made is more than remarkable; it is phenomenal. He is no longer in need of any physical or observational therapy, as his dexterity in his hands and arms has returned. His feeding issues are gone--were gone within 30 days. He is now at a normal rate of growth. He speaks clearly for a 3 year old, and he does so in sentences. His vocabulary is on target and age appropriate, and he is totally engaged in his surroundings. His pediatrician, neurologist, behavioral psychologist, Easter Seals OT, physical therapist and the feeding clinic are in agreement that these changes have occurred post cord blood transfusion. They can offer us no other explanation, yet we must all err on the side of caution, preventing false hope until proper research is completed.
So you basically see a mother looking for any researcher in the country who will do this. When I talked to the mother last week, she said Dr. Kurtzberg said to her, Yes, I will do the transfusion. The worst thing that can happen here is nothing. This is his own cord blood. The worst thing that can happen is nothing. But without it, he is going the wrong way. Let's try it.
The OB-GYN that delivered Ryan and collected his cord blood asked me, ``What in the world made you think of that? It is wonderful and very exciting news.'' I got that kind of reaction from the other doctors in Ryan's case and thought, ``How could I not think of it?'' When your child is in trouble, you use all available resources to fix the situation to the best of your ability.
All of Ryan's doctors are given updates and progress reports as they come. I have come in contact with Dr. Mindy Lipson-Aisen, the National Director of the United Cerebral Palsy Foundation. She would like to see a study begin with this treatment and has offered a grant to make that happen. The Easter Seals Dupage have been very accommodating with Ryan's needs. Based on conversation with them, I am sure that additional funding would be available.
Clearly, more adult stem cell work in this area is something that we need to do, with half a million CP patients in the country and more coming all the time. Why not head this off?
We owe our thanks to the mice and men that helped us get this far, but it is not about them, it is the children and others that may benefit. The resource and treatment accessibility needs to be changed. Funding research for children in need who have access to their cord blood in either a private or public bank will be a low-risk, high-yield and ethical place to start. Ryan and others should not be referred to as an anecdotal response as a society. We all deserve better than that.
Part of my point in mentioning Ryan's story is that as we divert resources from these areas that are working in adult cord blood research and putting half a billion dollars in very speculative, embryonic stem cell research that is still producing tumors, or even in more speculative cloning research, kids like Ryan don't get the treatment from a protocol that has been developed and is actually working. So why do we take a half a billion dollars from Ryan to put it over here in this speculative area that has moral questions as well, and kids like Ryan don't get treatment or we don't develop a protocol or we don't expand it across the country? What sense does that make that we would do that? For the sake of research?
I am for research, but I am more for treating kids like Ryan and getting more of them cured from CP and other diseases. Funding adult stem cells which are working is more important than saying, OK, we are going to prove that something doesn't work over here. We are going to prove that this doesn't work with embryonic stem cells or we are going to prove that this doesn't work with cloning when I could instead be really treating a bunch of kids like Ryan. Why would we do that?
Ryan was on the cover of The Hill newspaper last week flexing his muscles. His mother said his arms used to retract. Now he is on the front cover of The Hill, he has his arms outstretched, and he is showing his muscles like a good 3-year-old. His sister complains that he bugs her all the time, which to a parent is usually a very healthy sign that this is working. These are real people getting real treatments and real cures.
I want to go now to an example that is another miraculous example of a treatment area. I am only giving you two stories of the five that were in last week, and these are only two areas in the 70 that are getting treated with adult cord blood.
This is Jacki Rabon, a paraplegic, an amazing case and amazing young lady. She lives in central Illinois. I have a picture of Jacki here. This is a picture after her adult stem cell treatment. I want to give you the background on her.
Jacki Rabon is an 18-year-old paraplegic. She was on Capitol Hill last week with her mother and sister touting adult stem cell advances in the area of spinal cord injuries. Three years ago, Jacki was a very active 16-year-old who played volleyball in school, and was an outstanding player. In fact, she had hopes of going to college on a volleyball scholarship. All that changed.
She was riding in an SUV on a gravel road when it flipped multiple times. She landed on her back on that country road. She spent the next month in the hospital. Jacki writes:
That day changed my outlook. I was living a nightmare after this tragedy. I really thought my life was over. I couldn't imagine not playing volleyball anymore, jumping on my trampoline with my young nephew, chasing after my niece, or just taking a walk around my small community. Not only does something like this change the victim, but it also seriously disrupts and affects your family. I am a paraplegic with no feeling below the belly button. I had to learn to become independent again; to dress, bathe, transfer from place to place, and take care of my personal hygiene and toiletry issues. It was so difficult, and I struggled with these once simple tasks. After I accomplished these, I was released and allowed to come home. I was simply told, You will never walk again. That was my prognosis.
A 16-year-old paraplegic, an accident, ``You will never walk again.''
I got back to school a few months later and that was another adjustment. Everything looks and works differently when you are sitting in a wheelchair. I had to deal with a lot of depression and sadness, but I tried to continue with my life the best that I could. I truly believe that my faith got me through. If it wasn't for this amazing love of God, my strong will and determination, I don't know if I could have proceeded with what my life had become. But I have great determination along with the comforting faith and I didn't intend on giving up that easily. I wanted to give life another opportunity with my new ``lifestyle.''
I would like to pause in the telling of Jacki's story for just a moment. I have asked my colleagues to imagine what goes through the mind of a 16-year-old in this predicament. Beyond the physical pain, try to imagine the mental anguish. You have your life in front of you--endless opportunities in America--and it is taken up in a snap, in an accident--gone. You wake up one morning; all is normal. You get up and you brush your teeth, put on your clothes; you go for a jog and continue on with the day. The next morning you wake up and you cannot move, cannot brush your teeth, cannot put on your clothes or go for a jog. Your entire life has changed.
You desperately long for a cure. You would follow almost anyone or believe almost any story if it seemed credible, if it might produce a cure, if the person had the right credentials and respect.
Unfortunately, some people are putting forward stories and saying we are going to cure this with embryonic stem cells or human cloning, but these areas are not working. You hear, ``If only we have more Federal research money it will work.'' But I want to point out here, in Jacki's particular case, that she had a place to go and an area to try. I want to point out this work was done by a Portuguese doctor, Dr. Lima, and talk to you about Jacki finding Dr. Lima in Portugal and what happened.
Jacki continued, after going through this despair and depression. She writes this.
My world changed again in the fall of 2004. My pastor was watching a PBS show when the special called ``The Miracle Cell'' was aired. It was about a procedure called ``Olfactory Mucosa Transplantation'', being done in Portugal by Dr. Carlos Lima. It involved removing tissue from a patient's olfactory sinus area and transplanting it into the spinal cord at the initial injury site. My pastor called the house and urged us to turn on the show. We did and were glued to the story. I listened to amazing recovery of returned sensation and even the ability to walk again with continued rehab from others after having this surgery. I remember thinking, ``There's my chance!'' I knew I wanted to pursue this possibility for me.
My mom and I started researching this procedure on the Internet and collected as much information as we could. We discovered a Spinal Cord Injury Institute getting ready to open in Detroit, Michigan that summer. This institute was closely associated with Dr. Lima. We called to see if we could get an appointment to go and meet Dr. Steve Hinderer and asked about the procedure in depth and inquire about my chances of getting it done.
I did go to Detroit and was told that I could well be a good candidate. I was given the guidelines and criteria for having this done. After many months of additional testing, x-rays, etc. I was accepted.
This was very exhilarating for me. I had read about the success stories of the individuals that have gone before me. Their various success stories gave me so much hope!!
I had so much support from my family, friends, church, community and surrounding areas to raise the $50,000.00, needed to have this surgery. Without this overwhelming support I could not have gone forward with this incredible opportunity.
I went to Portugal in October 2005. I had the procedure done on October 29th. My experience in Portugal was not all pleasant. My mom and I had to deal with the language barrier and the unfamiliar culture. I returned to the states on November 5th. I rested at home for a few weeks, then went to Detroit to the Institute for aggressive rehab. Rehab was very tiring and indeed very aggressive. It was an exhausting experience but a very rewarding one. It was there that I took my first steps on the parallel bars. I was up!!!
My progress since undergoing this surgery has been amazing!! I have a lot of hip movement, some tingling and heaviness in my legs. I have continued with my rehab regimen at home. I have leg braces that were fitted to me. I can walk on parallel bars and have begun walking with a walker. I am up on my feet again!!!! That's the most satisfying feeling. Unless you have been confined in a wheelchair for an extended amount of time, you can't really know how rewarding it is to be standing again.
This brings me to the ongoing debate over adult stem cell research. I did not think a lot about this issue before the accident but now it has sparked a great interest within me. First, I am very much against embryonic stem cell research and advancement. I do not support this aspect at all. The killing of human life is appalling to me. But with adult stem cell and non-embryonic stem cell research I have become an advocate. My personal experience with adult stem cell transplantation should awaken the United States to the unlimited possibilities. This technique is simply ``your body healing itself''. Medical research in the United States has always been respected and admired for the advances toward cure for cancer, arthritis treatments and medication, heart disease and other well-known diseases and ailments. But when it comes to spinal cord injuries, the U.S. is very much in the negative category. We as taxpayers pay more money in the daily care of a spinal cord injury victim than we do on a cure. Now why is that???? The medical society treats the injury at the onset, then teaches the individual to live in a wheelchair and function accordingly. Then they are sent home and told, ``You will never walk again''. I experienced that first hand.
But I am walking again. I have goals of walking by the end of the year with my braces and crutches. This was made possible by the procedure in Portugal and aggressive rehab. But I had to leave the comfort of my home and country and travel to a foreign area to get this done. Now that is sad, isn't it?
This tragedy that happened to me can happen to anyone. It could be your wife, husband, son, daughter or friend. What would you want for them? Simply a statement, ``You'll never walk again'' or ``Never give up hope--there is a better option for you.''
Wake up, United States!!!! We are missing out. Let's look at the issue in a more personal level--I can walk again.
Jacki was up last week. She now has feeling in her hips. She is out of the wheelchair. She can walk with braces. She needs more of these treatments.
My point in saying this, why are we sending her to Portugal to do this procedure when this should be done in the United States and researched in the United States? She is probably going to need more of these treatments to get the spinal cord to fully fuse. They take these cells out of the base of the nose, grow them, put them right in the spinal cord area where it has broken, and they start to knit the spinal cord back together. But it is probably not going to be just one treatment. It is probably going be multiple treatments.
She had to do fundraising to raise $50,000 to go overseas to do this. It was not covered by an insurance company. Why wouldn't we develop protocols here to get this done with adult stem cells instead of diverting research money into speculative areas like embryonic stem cells and human cloning? We should put funding into areas to help people like Jacki.
I ask unanimous consent to have printed in the RECORD a table on the level of funding we have done on embryonic and nonembryonic areas.
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