Chapter 04: Research Challenges: Ethical Questions and Celebrity

Title

Chapter 04: Research Challenges: Ethical Questions and Celebrity

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Description

Dr. Gutterman talks about how he dealt with two problems that the interferon studies raised. First he discusses the ethics of selecting patients for treatment and of treating patients because they can afford to pay for an experimental drug (while others cannot pay). He gives specific examples of patients he has treated. Second, Dr. Gutterman talks about how he coped with the public attention and even notoriety that arose from his work. He digresses and talks about how the Mary Lasker came to fund the Lasker Award to raise awareness of medical research.

Identifier

GuttermanJ_01_20120412_C04

Publication Date

4-12-2012

Publisher

The Historical Resources Center, The Research Medical Library, The University of Texas MD Anderson Cancer Center

City

Houston, Texas

Topics Covered

The Interview Subject's Story - The Researcher; The Researcher; Patients; Patients, Treatment, Survivors; Discovery, Creativity and Innovation; Professional Practice; The Professional at Work; Evolution of Career; On Research and Researchers; Understanding Cancer, the History of Science, Cancer Research; The History of Health Care, Patient Care; Discovery and Success; Ethics

Creative Commons License

Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License.

Disciplines

History of Science, Technology, and Medicine | Oncology | Oral History

Transcript

Tacey Ann Rosolowski, PhD:

Would you mind answering a couple questions? Then if it is more appropriate to save these for later that is fine, because we had actually touched on a couple of issues that I had wanted to pick up from on the previous interviews, one of them being you had said that the whole idea of funding drug trials was an unresolved issue. I mean, that question of do you give the drug that is very expensive and experimental to the patient who pays—can pay for it, or how do you decide who gets this?

Jordan Gutterman, MD:

Well, I consulted with some people.

Tacey Ann Rosolowski, PhD:

Oh, interesting.

Jordan Gutterman, MD:

I cannot remember if I thought of it or probably this lady—Elaine Davis or maybe Leon Davis—they said it is totally justified in treating someone who has a chance if they are able, and you are going to have to judge this, and you are very—you have to trust yourself that you are going to do this objectively. These people would sell their last—you know—to save a life. But if they can pay a minimal amount for three other patients—so three additional patients—and it would be about $50,000 a course if you averaged it. You would probably treat more than three, but they would have to give, I think, something like a minimum of $100,000—two to three patients, depending—maybe even four. Now, the problem with that is that people sometimes, as you know, are justifiably desperate, and they will say, “Well, yes, I will sell my home,” and they won’t even tell you. So you have to be able to judge who they are, if they are capable of doing so, and we didn’t do this very often. We did this on occasion. I did it with the Davises. They came to me and—she didn’t fit the early trial. They said, “I want to start a foundation, and I want to raise money. We are willing to put in enough money to pay for three or four other patients.” Well, here is a man that is going to raise money—is going to help people. But I was always in—and this is a very interesting ethical question. Again, this actually gets back to college and philosophy and religion. You have to trust yourself. I don’t do these things lightly. So I thought I would consult—should I treat this person? But you have to judge. Are they capable of doing this? Also, they had to have some semblance of hope. I just saw a man who called me this summer—August—on that phone. I treated his wife with lung cancer. He was from Boston. He was up in Cape Cod. He now is in Detroit. She passed away. He was willing to give enough interferon—enough money for three. She was one of the first patients. She was in very good health. I deliberated and deliberated and deliberated. This was 1978. In 2001, August, I come back from vacation, and there is a message. This man is on the phone. I hadn’t talked to him in thirty-three years. He is coming to Houston with his new wife, which is a long story. She was friend of—when he married her—he raised his kids—she raised the kids. He came here after thirty-three years, and his gratitude for trying—as he calls it, courageously trying—and he did help other people. So these people remember. And there are other things, caveats, to that story, because he is probably going to help again. Not that he needs any compound—he doesn’t. But it was an interesting ethical thing. Again, it kind of fits into the background of family.

Tacey Ann Rosolowski, PhD:

It does.

Jordan Gutterman, MD:

When you are six years old or when you are sixteen or twenty-six or twenty-three or eighteen in college—or whatever it is—it was not easy. It was not easy.

Tacey Ann Rosolowski, PhD:

Can I ask who was it that you consulted with at that time?

Jordan Gutterman, MD:

Well, friends, colleagues, the Davises, other people like that. I think even on occasion I went to see a rabbi about it—kind of dilemma about that. As I recall, he wasn’t very helpful. But colleagues—just, I rarely do this. I would occasionally do it when it was pretty obvious, but we didn’t do it too often. We didn’t too often.

Tacey Ann Rosolowski, PhD:

But it is a huge burden. I mean, this is—was this the first time that anything quite like this had ever taken place?

Jordan Gutterman, MD:

Probably. Yeah, probably.

Tacey Ann Rosolowski, PhD:

Yeah—I mean—new ethical ground, new chemical ground, and medical ground.

Jordan Gutterman, MD:

Yeah. Yeah.

Tacey Ann Rosolowski, PhD:

The whole thing.

Jordan Gutterman, MD:

Yeah. You know, you are making me think about stuff, and I haven’t thought about this—that is why even the story’s a little bit—because from then—I got to think back about—and I am eager to tell you about this leukemia story. But I will get to it in a minute.

Tacey Ann Rosolowski, PhD:

Well, I interrupted you. You were going to—

Jordan Gutterman, MD:

No, no, no. No, actually, I like the digressions. No, we can get back to the story.

Tacey Ann Rosolowski, PhD:

I am glad we—you know—because that ethical question was in my mind when you made that comment.

Jordan Gutterman, MD:

I made that comment.

Tacey Ann Rosolowski, PhD:

And you didn’t have time to follow up on it in those interviews, so I’m glad that we had an opportunity to do that now. I also wanted to ask you, just to digress in a slightly different direction, about the whole public furor about interferon at the time. I mean, the media—you mentioned the magic bullet word, and that was a word that was coming up over and over again in the media. There were many physicians, including yourself, who were trying to calm the fury down and say, “Wait a minute.” What was that pressure like? I don’t even know quite what to ask about that, but it must have been enormous to suddenly feel that here is this social and public event that is connected to your work. And how did you go about responding to that and trying to provide information to keep the public from thinking that a cure was right around the bend?

Jordan Gutterman, MD:

Yeah. First, I want to make a comment. We can do it. I’ll put it on the tape. We can get rid of it later. I feel like I am in a Terry Gross interview.

Tacey Ann Rosolowski, PhD:

Oh dear.

Jordan Gutterman, MD:

No, in a positive—no. I love her. I love her. No, she just asks these penetrating—you know who she is, don’t you?

Tacey Ann Rosolowski, PhD:

Yes, I do.

Jordan Gutterman, MD:

Your voice even is a little similar. Did you know that?

Tacey Ann Rosolowski, PhD:

No, I did not.

Jordan Gutterman, MD:

Yeah. I don’t think I have ever seen her. I don’t even know what she looks like, but your voice is even a little similar. She asks these very penetrating questions of these very interesting people. And I love her interviews. I only hear them some on Sundays and stuff. I don’t have time to go through them more than that, but she just asks these—and I swear to God you sound like Terry Gross. I feel like—like I said, I feel like I am on Terry Gross. When my book comes out thirty years from now or twenty years from now, I will be on Terry Gross. She will be an old, old lady with a quiver in her voice. No, I swear the way you frame your questions—it is the ultimate of compliments, let me tell you that.

Tacey Ann Rosolowski, PhD:

Well, thank you.

Jordan Gutterman, MD:

You ask great questions. Now, it came about—I have been thinking about this, and then with the social questions it is just how she—how you frame the questions. Ask the question again.

Tacey Ann Rosolowski, PhD:

Oh now—(laughter)

Jordan Gutterman, MD:

No, I am playing with you. How did I deal with all this? Well, I was obviously a great deal younger. This was—what?—more than thirty years ago now. At first it was very exciting. I mean, just saying from a personal standpoint. I am just going to free associate. But let me first back up to Mary Lasker. She said the only—she was a big believer in information for the public because she—it is the way she got the National Cancer Plan. And even though people have criticized all that—all this money that has gone into it and the amount of basic knowledge, which will eventually—it has already paid off in some respects, and it has been highly criticized. But the reason she started the Lasker Awards—and I am backing up a little bit because it was really Mary Lasker who crafted the idea of getting attention of the public and getting attention of companies. Her whole idea in 1944 and 1945 to start the Lasker Awards was not so much to honor great scientists in clinical medicine and basic research and the medical sciences, but it was to inform the public of what is going on and what the advances are that say we got penicillin for this or we have this basic advance. And that is maintained—and everybody knows how well—how close I was. So even today, with her long gone for the last eighteen years, that philosophy still is quite aware at the foundation as a trustee as well as within the awards. Now, when it came to this, I think she was strategizing. I was new at this, but she was already strategizing. And the first big—let me go back. I don’t know if I discussed this, but the first big wave of publicity occurred in the late fall of 1978. There was a—

Tacey Ann Rosolowski, PhD:

The first wave of—?

Jordan Gutterman, MD:

Publicity.

Tacey Ann Rosolowski, PhD:

Publicity. Okay.

Jordan Gutterman, MD:

Time and Newsweek.

Tacey Ann Rosolowski, PhD:

Newsweek. Yeah.

Jordan Gutterman, MD:

Small articles—not the cover story that came out in March 31, 1980. I have very little in this office or anyplace. What happened was she called me, and I don’t know if this in the transcript, but—did I discuss the early stuff back in ‘78? The clinical stuff we did with the lady who could raise her arm and all that stuff?

Tacey Ann Rosolowski, PhD:

Yes.

Jordan Gutterman, MD:

She always told me to take pictures, so I tended to pick people with breast cancer who had skin metastasis, which is a nasty thing anyway, in part so we could take some photographs. I had no idea probably what—I mean—I knew kind of what she was talking about. But we went to Hoffmann-La Roche in June—June 15, 1978 to show this to this guy John Burns. They already had a nascent interferon program, but when he saw the pictures it is the classic stuff, you know? A picture is worth a thousand words. You cannot fake that—well, you could, I suppose, today with digital stuff. One day she calls me, and she says, “I think you should send a grant in to the American Cancer Society.” I’m pretty sure this is in the transcript.

Tacey Ann Rosolowski, PhD:

Yeah. Yeah. You talked about—was it the $2 million from the American Cancer Society?

Jordan Gutterman, MD:

Right. And then she got their publicity guy to write a press release. This was, again, pre-recombinant DNA. But the promise of a natural substance that could shrink some tumors—so they had—I was in Time and Newsweek. And as a young guy, never having been exposed to that, it was pretty exciting. It didn’t go to my head. I never got arrogant about it, but it was interesting. I mean, everybody knew me, and there were articles all over the place. But it got carried away. So we always were trying to restrain it, and we paid a price for it. It is a balance. I couldn’t stop the publicity. I just sent the grant in. It was an unusual thing. A lot of it was political in terms of $2 million and how they did it. There were good things and bad things—mostly good. She said, “You need to get other people involved to verify everything,” which was good, sage advice. Anything that happened with interferon after that immediately got the attention of the press. When it got cloned in January of 1980—not the full protein; it just got the DNA—I was at MacNeil/Lehrer. That was the first time, with a guy—with the president of the company who became a Nobel Laureate, I think, the next year—Wally Gilbert and the head of the American Cancer Society. That was quite interesting because on that show in 1980, at MacNeil/Lehrer—both MacNeil and Lehrer—but MacNeil interviewed me. In that particular show, Gilbert predicted that within one year the first patient would be treated with pure recombinant interferon. I didn’t say it, but I didn’t believe it. A year and one day later—except it wasn’t the Schering-Plough Biogen interferon. It was the Roche interferon with Genentech. And so by and large I thought this was a good thing because the public was beginning to learn about what basic science, cloning—I mean—so little is picked up. Fifty percent of Americans believe in flying saucers. So the scientific intelligence is—I am not trying to demean it, but we have to be aware that. I am aware of that all the time when I am talking—in those days—I have—with this new work, I have completely shut down. I do not want that to happen again and have it go ahead of the science. So I have reacted to this by never talking to anybody ever, ever again. In fact, most people think I don’t even work anymore, I think. They don’t know what I am doing. Well, if they go to the literature nobody reads anymore, they can tell what I am doing. So I reacted to that. I didn’t want—I don’t want to go through that again. So it wasn’t particularly—it was—when you get older, being on TV isn’t that big of a deal anymore.

Tacey Ann Rosolowski, PhD:

What was the price you felt you paid for it? You said that—

Jordan Gutterman, MD:

Stress—not so much that people were angry with me. It was probably a little bit of—as I got to know the basic science community or any one of those clinicians out there talking about something that may not have that much of an impact, I think there was some—maybe some credibility things that I—no one ever told me that, but I sensed. It took me a while to recover because I’ve see it a lot since then in a lot of fields—gene therapy. I mean, you can name them—the fashionable things. I know people say, “Oh, that is just a bunch of hype,” and this, that, and the other. So I’m sure people were saying that. I don’t think it was really good. There was a lot of jealousy, a lot of—kind of—looking down on that. So I don’t think, in general—I think the publicity played a big role in the fundraising. There is no doubt with this interferon foundation—without them we would never have made the key discovery, which I will get to in a minute, or other discoveries. It is like so many things in life. It’s good and bad. You pay a price for it. Like I said, I made the decision this time, and we won’t talk about it today, but I discovered what is turning out to be a very novel thing with plant compounds that work in very unique ways. It works at the root of the cancer, I think. I don’t want to get into it now. If we are right, this is going to open up things I hadn’t even anticipated a year ago, for sure. And I’ve said nothing. All we do is write the articles because I think—I don’t need that publicity. We are trying to get money now. I think we are going to get some very substantial funding for it but without the PR. It will probably be a little bit easier with publicity, but this is what it was. Mary Lasker was a big thing. She has been criticized for that too, that she overplays things or overplayed things. So I think credibility and more from the basic side. But I, again—to repeat—I see it a lot with colleagues or—you know—so much here that are way ahead of the game, and I am thinking. “I think you’re making a mistake here.” But again, I don’t want to judge them because I did it. I mean, I wasn’t involved with it. I was kind of dragged into it. But if you read the Time magazine cover story, for the first time, people—I mean—taxpayers are paying for some of this—a lot of it. They deserve to understand. It is best even though they may not understand all of it we need to. In fact, let me make a flat statement. I think what I have learned here at MD Anderson and so forth is we need to inform the public of what is going on, of new treatments. In fact, I will tell you a story now. I am jumping a little bit. There is a disease I am going to tell you about called hairy cell leukemia. And it actually gave me the name of the book (???) (inaudible). So I was on—well, I am jumping. This is the story I was going to tell you, but I am going to—well, let me tell you the story. So we were working, we had responses, we published articles, but nothing was a homerun, so to speak. I wasn’t paying attention to finding something to get the FDA approval. I was just trying to do the clinical science. We had activity in a bone cancer called myeloma and then some lymphomas, a little bit in breast cancer, definitely in kidney cancer, which was untreatable. There is a rare disease; it is a form of leukemia called hairy cell leukemia. I don’t know if you have read about this.

Tacey Ann Rosolowski, PhD:

Yeah, but explain it for—

Jordan Gutterman, MD:

Did I talk about it?

Tacey Ann Rosolowski, PhD:

No.

Chapter 04: Research Challenges: Ethical Questions and Celebrity

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