House of Representatives Hearing: OPPORTUNITIES AND ADVANCEMENTS IN STEM CELL RESEARCH
HEARING before the SUBCOMMITTEE ON CRIMINAL JUSTICE, DRUG POLICY AND HUMAN RESOURCES of the COMMITTEE ON GOVERNMENT REFORM
HOUSE OF REPRESENTATIVES ONE HUNDRED SEVENTH CONGRESS FIRST SESSION
JULY 17, 2001
….We will now hear from Mollie and Jackie Singer.
Ms. Mollie Singer: I want to thank you for giving us the opportunity to speak today.
My name is Mollie Singer and this is my twin sister, Jackie. Eight years ago, I was diagnosed with juvenile diabetes, and ever since then, I worry that my sister will get this terrible disease. So far, I have had 21,000 shots and 28,000 finger pokes. At age 5, I had open- heart surgery which was made harder because of my diabetes. Because of all these problems I’ve had, I worry about my future and I don’t want Jackie or anyone to go through what I’ve been through. We need to do something to stop it. Please support the NIH Guidelines for Embryonic Stem Cell Research. Now my sister, Jackie, would like to say a few words.
Ms. Jackie Singer: Since Mollie was 4 years old, I’ve watched her struggle with her diabetes. It’s so hard. For more than half our lives, we have visited our Representatives in Washington, DC, to ask them to support diabetes research. We have helped raise over $75,000 for research. We have written letters to President Bush. We have visited the National Institutes of Health to see research laboratories and speak with Dr. Spiegel and Dr. Harlan. We have done all this to help cure diabetes, but it still isn’t cured. Mollie may look normal, but her disease is very hard on her body. All Mollie wants is to live a normal, healthy life, and embryonic stem cell research is our best hope.
Ms. Mollie Singer: Last week we wrote a letter to President Bush to tell him our thoughts about embryonic stem cell research. I’d like to read this letter to you now.
Dear President Bush,
We hadn’t planned on writing you so soon, but this morning we were watching the news and we heard about the people in Virginia who made embryonic stem cells in the laboratory. We were so upset, we couldn’t believe that they made cells just so they could be destroyed. We must be very naive because we never thought someone would do something like this. So we asked mom how this could happen and she explained that right now it is legal, but that she is completely against this type of research and so is the Juvenile Diabetes Research Foundation.
We feel so bad, because for a long time we have asked you to help us and to support embryonic stem cell research, but we never meant like this. Our family is Catholic and we have prayed and asked God to help us know what is right and what is wrong about embryonic stem cell research. We always thought it was wrong to make embryos, especially when they did it for no other reason than to destroy them.
But we also believe it is just as bad to treat the embryos that already exist as though they are worthless. Because embryos are so special, embryonic stem cells should be allowed to have meaning. We should respect them and value them, and we shouldn’t be wasting such a special gift. If these cells will never be able to become a human life, then maybe the most moral thing to do is find out if these cells can save lives rather than simply throw them out. Whenever we have difficult decisions to make, we usually ask WWJD, “what would Jesus do,” and we don’t believe that Jesus would ever waste a gift from God.
We never talked to you or anyone about how much we know about stem cell research, so most people think that because we are only 12 that we couldn’t possibly understand the moral and medical issues that are involved, but we do understand. We are devout Catholics and have had many conversations with our family and parish priest about this subject. Also, for the past few years we have visited research laboratories, including NIH, and have talked for hours with quite a few well-known researchers. We have listened to many knowledgeable and respected people on this subject and, above all, we have prayed for guidance.
President Bush, we don’t want you to see our picture or think of us and somehow associate the support we asked for with the researchers who created their own embryos. Yes, we want you to remember us when you make your decision. But, when that time comes, we want you to know that we, along with all the other people who desperately want to cure their diseases, are talking about the embryos that already exist, not the embryos created by scientists.
At the beginning of this year and as a result of what we have learned, we finally made the decision to support embryonic stem cell research, but only the ones that are in existence and that will be destroyed after a few years. We can only imagine how difficult this decision is for you, but it helps us to know that someone as wise as you are was chosen to make this decision. At least we can be sure that you will do what you honestly believe is for the greater good and in the best interest of all the people.
As always, we will keep you and your family in our prayers.
And we signed our letter, “Love, Mollie and Jackie.”
Ms. Jackie Singer:Please help us. I don’t want Mollie to go blind. I don’t want Mollie to have kidney failure. I don’t want Mollie to have a heart attack or stroke. I want Mollie to live. Please support embryonic stem cell research and give the researchers the opportunity to cure diabetes. Thank you for listening to us.
Mr. Waxman:And let me ask Mollie Singer a question, if I could, and maybe pull the mic over. How old were you when you were diagnosed with diabetes?
Ms. Mollie Singer: I was 4 ½ years old.
Mr. Waxman: And can you tell us about your daily routine, checking your blood sugar levels and giving yourself insulin, and the like?
Ms. Mollie Singer:Well, I test my blood sugar 10 to 16 times a day, and this is an insulin pump, and I bolus instead of taking shots and it has insulin right here. It’s connected to me, so that delivers insulin.
Mr. Waxman: What would a cure mean for you? It would mean you wouldn’t have to do all those things anymore, huh?
Ms. Mollie Singer: I wouldn’t have tests. I wouldn’t have to take shots or have an insulin pump. I could just be a normal kid and have sleepovers and just have a real life.
Mr. Waxman: Thank you. I particularly want to thank the Singer young ladies and Nathan for being here because they are really here on their spring vacation, their holiday–or summer vacation. I would like to ask you, how is your life different from your sister, the fact you don’t have juvenile diabetes?
Ms. Jackie Singer: Well, I don’t have to test and I don’t have to wear an insulin pump. Even though I’m her sister and I don’t have diabetes, it still affects me greatly. I think that if this disease is cured, it would really mean a lot to both of us and all of our family.