Caroline interviews Dr. Spiegel
at Children's Congress
Dr. Allen Spiegel is recognized internationally as a researcher and endocrinologist. He earned his medical degree from Harvard Medical School. He has written more than 350 scientific papers and two books and has received the Jacobaeus Prize from the Novo Nordisk Insulin Foundation, along with other awards. In 1999 he was named director of the NIDDK (National Institute of Diabetes and Digestive and Kidney Diseases).
Q. How has being a researcher to find a cure for diabetes changed your life?
A. I was a researcher until 1999 and then I was appointed director of NIDDK. Since I've taken over that job, I've had much less time to do research myself. My real responsibility is to direct and support the research of other investigators.
But what has changed my life in this job is getting to meet people with diseases, like type 1 diabetes, that are so important, so serious, and for which research really offers help. And that's been absolutely a huge change because when I worked in a laboratory—although I also worked at the NIH hospital and clinical center and saw patients, including kids—I was working in a very narrow kind of frame with very, very specialized kinds of disorders. Now I get to meet people around the country and around the world, and that really has been life-changing.
Q. I am 13 years old now. How old do you think I will be when I'm cured?
A. If we knew the date precisely, that would mean we had solved all the questions, and it would just be an engineering problem.
My hope is that in your 20s, you will be rid of this disease. Is that realistic? Time will tell. While we are working hard to cure this disease, we must not forget that other people are focused on making life better now for people with diabetes.
Q. What do you need most in research right now to find a cure?
A. We need committed and brilliant researchers who are going to work full bore to explore all the avenues we talked about. We are very fortunate in this country that we have so much in the way of research dollars and support.
One of the things that is disappointing to me is how few young people are going into science now. It is disturbing. It is a tough life, lots of failure, and it does not necessarily pay as much as other things. We need to encourage more people to be interested in science.
Q. Do you get emotional at Children's Congress Town Hall Meetings?
A. Yes. Scientists are not coldhearted. They are human beings. Who could not be touched by the kids who are here? You are so important to us.
Q. Why did you choose to become a scientist in diabetes research?
A. Endocrinology, of which diabetes is a part, is the study of the way the hormones work and the way the glands that make the hormones work. When I was training (I graduated in 1971), endocrinology was one of the most scientific fields. It was more scientific than cardiology and kidney and all the other kinds of specialities. It was the field in which biochemistry was really very well developed.
I was so impressed that if you gave too much of a hormone, someone could get this horrible disease, and if you had too little, for example type 1 diabetes, you could get this awful disease. The fact that that was well studied was something that said to me that you could really do research and really understand something better. Most of what I worked on is how hormones work and act.
Q. Did you always dream you would be a scientist or director of NIDDK?
A. I definitely did not dream of being the director of the NIDDK. In fact I am embarrassed to say that when I was interviewing to become an intern and resident at the Massachusetts General Hospital in Boston where I trained, the head of the committee asked, "Do you see yourself becoming the chief of the department of medicine someday?" I said "No. Why would I do that? That would be a waste of time."
I was not very tactful in saying that, but I did not see myself as an administrator. I was always eager to be involved in research and at the same time to deal with patients. Being at the NIH has allowed me to do that. Now in a way, as NIDDK director, I can do that on a wider scope and that has been very important to me.
Q. What keeps you going after setbacks?
A. Well, this is a terrific thing. I think I'm quoting Winston Churchill, the British Prime Minister during World War II, and what he said is, "Success is going from failure to failure with undiminished enthusiasm."
That's what it's like doing research. And I have been doing research for a long time now, for most of my life. I have been doing research since before I started at the NIH in 1973. I did research as a high school student, as a college student, and of course in medical school.
I have to tell you that most of research is failure and setbacks because most of the experiments don't give you the results you are expecting but, if you design the experiments well, you learn from every single experiment. What gives you the courage and desire to go on is those few actual successes—when something you have dreamed of turns out to be true and changes the way you look at things. That has been very, very powerful for me.
Q. What was your greatest setback?
A. I want to talk about my most recent setback in relation to type 1 diabetes.
We had a huge clinical trial called DPT 1 — a trial to prevent type 1 diabetes. It had two parts. It looked at individuals who were at very high risk for developing type 1 diabetes and asked the question of whether injecting insulin could prevent or delay the onset of disease.
And then the other part concerned people who were at lower risk to determine whether oral insulin — insulin in capsules — could prevent type 1 diabetes. There was a lot of work in mouse models and some with humans that suggested it might work. The sad truth is that it did not work. So a year ago, we found that the injection did not work and just this spring we announced the results that the oral one did not work.
We had more than 300 people around the country who were recruited to the trial because they had a family member with diabetes and we knew from certain blood tests that they were at high risk and I would have loved to see that work. But it did not work so that's a big setback.
At the same time, the trial was so well designed that it has really set us up for future trials with other kinds of preventing the disease. We are now much better able to predict who is at risk for the disease. And in that sense the trial was very valuable.
Q. What was your largest breakthrough?
A. In terms of successes, I have had personal successes in my research, and one that I will give an example of is a genetic disease.
We have seen dozens of families at the NIH with a disease called NEN 1. People with NEN 1 are born with a gene that is defective and causes them to get tumors of their endocrine glands. Working with Frances Collins, who is the director of the Genome Institute, we were able to find that gene on chromosome 11 in 1997, and people can now be diagnosed more quickly. We are working on understanding how that gene works and how it leads to these tumors so that we might be able to get better prevention and treatment.
The ironic thing is that these people get tumors of the islet cells and so they make too much insulin. Can you believe that? So they get low blood sugar because of these insulinomas. We have been able to reproduce that in mice by knocking out that gene on chromosome 11 so they get these tumors of the islets that produce too much insulin. In a way that is relevant to type 1 diabetes. Of course, we would not want to knock out that gene and give tumors to people but it does tell us one of the things that regulates these beta cells.