Diabetes and Research
With Mary Tyler Moore, International Chairman and
Dr. Robert Goldstein, Chief Scientific Officer,
Juvenile Diabetes Research Foundation International
Wednesday, July 11, 2001; Noon EDT
Sixteen million people in the United States have diabetes, a disease in which the body does not produce or properly use insulin which is needed to convert sugar, starches and other food into energy needed for daily life. Last week Mary Tyler Moore, who herself has Type 1 diabetes, testified on Capitol Hill on behalf of the Juvenile Diabetes Research Foundation's (JDRF) Children's Congress and urged lawmakers to support stem cell research which could help in the prevention of not only diabetes, but Alzheimer's, Parkinson's and other chronic illnesses.
Moore and Dr. Robert Goldstein, chief scientific officer of JDRF will be online Wednesday, July 11, at Noon EDT, to discuss diabetes, living with the disease and their hopes for embryonic stem cell research.
Moore has been international chairman of the Juvenile Diabetes Research Foundation for the past 17 years and has committed herself to raising public awareness of diabetes through frequent visits to Capitol Hill, public service announcements and media campaigns. Her autobiography, "After All, includes a chapter on the foundation and her own diabetes.
Dr. Robert Goldstein
Goldstein is responsible for developing and guiding the research programs of JDRF. Prior to joining JDRF in 1997, he was the director of the Division of Allergy, Immunology and Transplantation at the National Institutes of Allergy and Infectious Disease-NIH. He received his undergraduate degree from Brandeis University, his medical degree from Jefferson Medical College, his Ph.D (Microbiology/Immunology) from George Washington University and his MBA from the Stern School of Business, New York University.
JDRF is a nonprofit, nongovernmental funder of diabetes research and was founded in 1970 by parents of children with diabetes.
A transcript follows.
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Ms. Moore, Your recent testimony on Capitol Hill along with the Children's Congress was very moving. Thank you for your continued inspiration for those living with diabetes. If stem cell research receives the increased funding that I believe it should, how close do you think we are to making more breakthroughs on advanced treatments or a possible cure?
Mary Tyler Moore and Dr. Ronald Goldstein: Dr. Goldstein: If we mount the large government funded NIH research effort that could go forward, we will be engaging the best and brightest scientists from the biomedical research community worldwide. With such a major push, we would envision discovery proceeding rapidly during the next 3-5 years so that we would have the knowledge of how to make stem cells into beta or insulin-secreting cells suitable for research clinical trials and those early trials should be able to be conducted in years 6--10 so that by the end of the decade we would have a good idea of whether or not we have a suitable cell alternative to human islets derived from donor pancreas. In years 10-20 we should be able to conduct the appropriate FDA supervised clinical trial in my people.
MTM: What is important is that only with federal funding can we achieve the potential as soon as possible.
Is there any known link between diabetes and pancreatic cancer? I lost my father to these illnesses and wonder if there is research being done on the relationship between the two.
Mary Tyler Moore and Dr. Ronald Goldstein: Dr. Goldstein: I don't know of any particular link. In other words, we don't think that people with diabetes have a higher frequency of pancreatic cancer.
My mother-in-law has had Type 1 diabetes since age 18. She's an absolute fanatic about managing her diabetes and is now 58, and never had any major complications. I know that diabetes shortens lifespan on average - -but what about people who follow the management principles to the letter? I assume/hope that diabetics are living to normal lifespans? Without complications?
Also, what's the latest on heredity? How great a risk is my husband at? Our children?
Thanks in advance -- we're appreciative of your work?
Mary Tyler Moore and Dr. Ronald Goldstein: MTM: People with diabetes do not live a normal average lifespan and even with the most scrupulous attention to the details of living the life of a diabetic, wear and tear on the vital organs of the body does continue. It is better scenario with constant monitoring but it is far from perfect. Insulin is not a cure. Good control is not a guarantee of freedom from complications. I've had diabetes for over 30 years and unlike your mother-in-law, I have not been so lucky. I've had many surgeries to restore my vision which has been partial--not whole and have on two occasions narrowly missed undergoing an amputation due to a foot infection. And I can promise you my care is as good as it gets.
If Bush ends federal support for stem cell research, what will happen to the frozen embryos that scientists had wanted to use?
Mary Tyler Moore and Dr. Ronald Goldstein: MTM: They will be discarded and what a horrible waste of human life that represents for the millions and millions of people with chronic diseases who might benefit from stem cell research.
Hello and thank you for joining us today. I have always admired you and enjoyed your work. I heard that you can get diabetes by eating too much sugar in your diet. Is this true? Somehow it doesn't seem quite right to me . . .
Mary Tyler Moore and Dr. Ronald Goldstein: MTM: In the kind of diabetes that is brought on by either obesity or maturity which is called Type II diabetes, overweight causes insulin resistance of Type II diabetes. The kind that I have and that over a million people in the U.S. have--the Type I--is the result of the immune system deciding to attack and destroy the beta cells in the pancreas which help the body utilize sugar. So they are two distinct problem stemming from the pancreas and the Type II diabetics do not escape the same complications as those of us with Type I diabetes endure.
Ellicott City, Md.:
I commend those trying to get the word out about children with diabetes. However they need to stress the issue of diabetes in babies. My son was 14 months and nearly died June 19,1999 when he was diagnosed. The doctors and hospital sent him home twice telling me he had a virus and it had to take it course. If I only knew that babies could have diabetes then maybe we could have been spared some trying pain, and my only mission is to try and spare someone else some pain. I pray they find a cure because it is not easy trying to give a 3-year- old insulin 4 times a day. And telling him he can't go with his big sister because no one else knows how or are afraid to check his sugar because he is so little. It weakens my stomach everyday and night. If there is anything I can do to help please don't haste to e-mail me back. Love and Prayers to all dealing with this terrible disease.
Mary Tyler Moore and Dr. Ronald Goldstein: MTM: It is indeed a heartbreak when someone so young has this disease. I cannot help but believe that the youngsters that go through this emerge stronger and more independent than those who do not have diabetes. That's just something to hold onto during your heartbreak.
Dr. Goldstein: Researchers from Finland and Sweden have described not only an increasing number of people with Type I diabetes, but that this is occurring in an increasingly younger age group and that's presenting us with an opportunity and a confusion about why that is. We're tying to get the answer as to why that's occurring. We're not sure what the statistics in the U.S. show because they have not been studied as thoroughly as it has been in Scandinavia.
MTM: Many babies are misdiagnosed. They have the symptoms but not enough evidence for the doctor to make a diagnosis. People must be aware that a baby who is lethargic is thought of as a prime candidate for investigation.
My late father had diabetes, although it did not cause his death. Are there authoritative studies which show the likelihood of sons/daughters of diabetics to have the disease?
Mary Tyler Moore and Dr. Ronald Goldstein: Dr. Goldstein: The authoritative studies show trends in families but we don't have a specific diagnostic tool or test for one individual to determine that that's the particular person who will be affected. What we're doing is studying large populations of families who have a member of the family with diabetes so we can understand the genetics of the entire family so that we can develop diagnostic tests that will enable us to detect individuals who are at risk.
MTM: There's a clue to diabetic prediction in that women who give birth to large babies often have diabetes themselves later and it may be many years later. This happened with me. My son weighed 9 pounds 3 and a half ounces and it wasn't until another twelve years before I became a diabetic.
My sister has Type 1 Diabetes and I am concerned with a trend that I have seen with her over medicating herself. She uses a pump to administer her insulin but I think she is so concerned with keeping her sugar levels low (under 100) that she over medicates causing serious reactions which have in cases caused blackouts. The family is concerned because she works, drives etc. and we feel she is a potential time bomb. I was wondering if you had any advice for us while we struggle with this conflict. Are there any resources for family members? How can we help her to see the dangers of too much insulin as well as not enough? What have been your experiences with this issue?
Mary Tyler Moore and Dr. Ronald Goldstein: MTM: My diabetes is not maintained through the use of a pump, so I don't have direct experience but I do have experience with low sugars and when you have tight control of your diabetes you're likely to run low blood sugars. It is not only very unpleasant but it is supremely dangerous and I would suggest this young woman be in close contact with her doctor on the issue of dosage of insulin before she gets into a real problem such as coma or seizures.
This is why we need research funded by the government. Research with stem cells. They can cure diabetes. This is the first time I've ever been able to say that something can cure diabetes. Stem cell research offers that cure.
Dr. Goldstein: The quality of the control is usually better determined by the patient and the doctor working very closely together and the family may simply want to make sure that their concerns are expressed. However, they can't determine the correct amount of insulin to be used or the correct monitoring so the individual needs as much help and support as possible.
Hello Mary and Dr. Goldstein,
I am a big fan of yours, Mary! Thanks for all your work with diabetes as well!
My question is can diabetes come later in life?
Mary Tyler Moore and Dr. Ronald Goldstein: MTM: Yes, both types. As I said, I was 31 when I was diagnosed and it can be developed at any age.
What effect do you think today's announcement regarding creation of embryos will have on the stem cell decision to be made by President Bush?
Scientists Use Embryos Made Only for Research (Washington Post, July 11, 2001)
Mary Tyler Moore and Dr. Ronald Goldstein: MTM: My answer is hopefully it will have no effect and it reminds me of the need for federal oversight and that oversight comes with funding.
West Hartford, Conn.:
My daughter, who is 43, has had diabetes since she was 23 months old. She is legally blind now and I worry about kidney complications. She maintains good control, leads an active life as an assistant professor at a prominent medical school. How true is the belief that kidney problems usually follow eye damage?
Mary Tyler Moore and Dr. Ronald Goldstein: Dr. Goldstein: I don't know that there's a direct connection. Many more people get damage to their eyes than damage to their kidneys. The common connection is that they're both due to changes in the blood vessels caused by the ravages of diabetes.
MTM: My doctor has prescribed for me a medicine called Vasotec to help prevent kidney disease and I've been taking that for 5 or 6 years. Everybody with diabetes should ask their doctors about safeguards that are available.
Hello! Thank you for your support of stem cell research. I'm also a type 1 diabetic, and July 4th marked my 4th year on a Disetronic insulin pump. It's an amazing device that really makes a qualitative difference in my life. It can provide great glycemic control and flexibility in one's daily schedule. I've always wondered why you haven't considered getting one?
Mary Tyler Moore and Dr. Ronald Goldstein: MTM: I have an unreasonable phobia for regarding the attachment of something to my body, however, I am working on getting past that because everybody that I know who uses the pump talks about this same improvement of quality of life and better control and less hypo-glycemia.
With all due respect to your work on behalf of diabetes sufferers (I have a few in my family) your broad advocation of stem cell research is disappointing. Today is a sad day - the first time human embryos were created in a lab for the sole purpose of research, not to transmit life. I am aware that stem cells can be harvested from adults in vivo. That is certainly worthy of funding since it may help disease sufferers. But creating and destroying life for any purpose is evil. In the long run, we will all see that. It's a no-brainer.
Mary Tyler Moore and Dr. Ronald Goldstein: MTM: Yes, but we are not advocating the creation of life for the purpose of experimentation. That is wrong in my opinion. What we are advocating is the use of six or seven day old embryos which are destined for destruction anyway. It allows one to make a kind of heartwrenching decision such as a young man who is hit by a car and dies. His parents can either grieve alone or they can turn over his organs for research to give life to others. That's what this appeal to President Bush is about.
First, I want to thank both of you for your tireless work for JDRF. I am the father of a 14 year old boy with Juvenile Diabetes, and I couldn't imagine the change that it would have on our lives.
In my personal observation of the press, those opposed to federal funding of embryonic stem cell research seem to be more vocal and prominent in the media. I don't have to tell you how important this issue is to those afflicted with a variety of chronic diseases. Would it be possible to combine forces with the Alzheimer's Foundation, Parkinson's foundation, etc for the purpose of mounting a significantly higher profile PR campaign in order to assure federal funding for this research?
Mary Tyler Moore and Dr. Ronald Goldstein: MTM: We do have a coalition of over fifty groups who have the same mission in mind and we are leading the charge together.
Dr. Goldstein: The Web site to consult is www.stemcellfunding.org.
Halifax, Nova Scotia:
Is it possible to prevent the onset of Type II Diabetes with diet and exercise? Do we know why some people are more predisposed than others of developing it? Has a particular gene been found for instance?
Mary Tyler Moore and Dr. Ronald Goldstein: Dr. Goldstein: There are two answers. There is a genetic component but there is no single gene defect that we could fix or alter. Part two is that there now have been studies that demonstrate that adherence to a strict diet combined with a vigorous exercise program can prevent and/or significantly delay the onset of Type II diabetes. And the third point, in several disadvantaged of minority populations the combination of obesity, sedentary lifestyle, poor dietary management in the form of fast foods, has led to an increase in Type II diabetes in adolescents.
MTM: When I was diagnosed it was after suffering a miscarriage and the doctors were baffled as to which came first, did the diabetes cause the miscarriage or did that occurrence bring on the diabetes.
Falls Church, Va.:
Diabetes is one of many diseases for which stem cell research could find a cure. In his column in the Washington Post on Tuesday, July 10th, Richard Cohen discussed the conservative Republican leaderships’ reminder to Republicans who support stem cell research and also describe themselves as “pro-life” that those two positions are mutually exclusive. They warned that one can’t be “pro-life” and simultaneously support stem cell research, which involves the destruction of embryos. What is your response to the Republican leaderships’ (Dick Armey, Tom DeLay and J. C. Watts) challenge to other Republican representatives to abandon support for stem cell research and get back on the “pro-life” side of the fence?
Mary Tyler Moore and Dr. Ronald Goldstein: MTM: I am pro-life and I would suggest that anybody who has any misgivings about how much pro-life stem cell research is should read Sen. Orrin Hatch's letter to the president or Sen. Connie Mack's op ed piece on this subject. Both are staunchly pro-life and both firmly believe in stem cell research.
Dr. Goldstein: We think that you could not be more pro-life in advocating a potential benefit from spare frozen pre-implantation embryos that could provide the source of stem cells for many millions of people with diseases when the alternative is that those spare or excess embryos that are frozen are headed for destruction in any case.
MTM: President and Mrs. Ronald Reagan are as pro-life as you can be and they have steadfastly stood in defense of stem cell research.
East Lansing, Mich.:
Dear Mary Tyler Moore,
My daughter Tori has been diabetic since she was not quite 3 years old. She is just over 7 years old now. Tori is a quiet, shy, beautiful little girl. She has dealt with her diabetes, mentally & emotionally, I thought very well. She is now starting to tell us how much she is upset about it, and was just crying about it, saying she hates it & wishes there was no such thing as diabetes. Tori also told me she gets so angry she stomps her feet. (that is a big deal for her - she is very calm & sweet). I just don't know what to tell her.
If you have any ideas, please I am very interested.
Mary Tyler Moore and Dr. Ronald Goldstein: MTM: I would tell her that it is appropriate for her to have these feelings and let her stomp her feet and express her anger and then come to Washington and tell President Bush how it is to live with diabetes and urge him to support stem cell research.
Golden Triangle, Washington, D.C.:
Can you suggest any good diet books for diabetics? Thanks.
Mary Tyler Moore and Dr. Ronald Goldstein: MTM: I would suggest you get in touch with local JDRF chapters to get their thoughts on diets and books. Or check the Web site which is www.jdrf.org.
Dear Ms. Moore,
I, too, suffer from diabetes (Type II). One
of the most annoying side effects is
peripheral neuropathy. Have you experienced
this and will stem cell research provide some
answers into this debilitating condition?
Mary Tyler Moore and Dr. Ronald Goldstein: MTM: Yes, of course it will. It will provide the cure for diabetes. It may also help Christopher Reeve and other spinal cord patients. It may also help Alzheimer's, heart disease and Parkinson's disease. And in the meantime, I have had good results from taking a drug called Neurontin which you should ask your doctor about.
Mary Tyler Moore and Dr. Ronald Goldstein: MTM: I think we are on the brink of an entirely new way of dealing with disease and I think President Bush can leave a legacy, the likes of which have not been seen before. And that is to bring us over to a new arena for dealing with diseases that have been incurable up to now.
Dr. Goldstein: On behalf of all of us at JDRF, thank you for your support and attention and increase their participation in the public decalogue to help convince lawmakers that we're only going to find a cure through increased research.
MTM: Thank you for giving us this opportunity and thanks to everyone who participated in today's session.
That was our last question today. Thanks to everyone who joined the discussion.
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