Chapter 32: Occult Blood Testing and Public Awareness of Colorectal Cancer
Files
Description
In this Chapter, Dr. Levin first talks about the large comparison of occult blood tests conducted by MD Anderson in the early eighties. He explains that he was aware of work done in the sixties to show that blood in the stools could be a sign of colon cancer. He was approached by a company to test the effectiveness of an occult blood test which would be distributed by pharmacies and mailed back to MD Anderson. Dr. Levin talks about the researchers involved and notes the collaboration of Public Affairs. (See also Steve Stuyck, Chapter 8.) He talks about the outcome of the study, noting that the team never had the ability to follow up with patients. The study looked at the relative effectiveness of different types of tests and the potential interference of diet and medication. The results were published [Levin B, Hess K, Johnson C. Screening for colorectal cancer. A comparison of 3 fecal occult blood tests. Archives of Internal Medicine. 1997 May 12;157(9):970-6] and Dr. Levin comments on the finding that providing evidence of an abnormality did not guarantee that patients and practitioners would act on the information.
This finding leads to a discussion of the challenges of creating public awareness of colorectal cancer and Dr. Levin sketches his activities in these areas. He talks about an event organized by Hilary Rodham Clinton at the White House in 1996 to raise awareness. He also notes Katie Kouric’s efforts, including her founding of the National Colorectal Cancer Alliance. He explains that the Alliance partnered with the Entertainment Industry Foundation to fund basic research, community outreach and community education and is still active. Dr. Levin’s study of occult blood tests was partially funded through this group. He makes some final comments on this study, which resulted in a model for predictors of risk.
Identifier
LevinB_05_20130827_C32
Publication Date
8-27-2013
City
Houston, Texas
Interview Session
Topics Covered
The Interview Subject's Story - The Researcher The Researcher Definitions, Explanations, Translations Understanding Cancer, the History of Science, Cancer Research The History of Health Care, Patient Care Discovery and Success MD Anderson Impact Institutional Processes Healing, Hope, and the Promise of Research MD Anderson Snapshot Building/Transforming the Institution Multi-disciplinary Approaches Education Information for Patients and the Public
Creative Commons 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 like to shift gears at this point and talk about work with occult blood testing?
Bernard Levin, MD:
Yes, of course. We may have covered some of this before, but let me just start from the beginning and say that because of my interest in finding ways to detect colon cancer at an early stage, I became aware of the work that had been begun in the sixties on occult blood testing, looking for hidden blood in the stool. And I was invited to a meeting in New York by Dr. Sid Winawer, who is at Memorial Sloan-Kettering; he was then about to become the chief of GI at Memorial Sloan-Kettering—to a meeting that was sponsored by the companies that made an occult blood test, and became aware of this kind of work. I and others thought that it would be a good idea to do a study in the Houston area comparing several kinds of hidden blood in the stool, occult blood testing. I was fortunate to recruit Constance Johnson, as a research nurse, in to help, as well as individuals from the Department of Pathology who helped to design the study and provided the kits. And it’s worth saying, in parentheses, that Constance subsequently conducted research in the Department of Biostatistics and then subsequently received her PhD and is now a faculty member at Duke University.
Tacey Ann Rosolowski, PhD:
And am I correct in recalling—I interviewed Steve Stuyck, and was this the study that some people in public affairs were also involved with?
Bernard Levin, MD:
Yes, of course. I have omitted something that was very important, very important, and not only because of the publicity, but also because of volunteers. So we ended up with a gargantuan mess, with lots and lots of stool samples.
Tacey Ann Rosolowski, PhD:
How many?
Bernard Levin, MD:
Thousands. The study was very successful, and we had trays and trays of these samples which needed to be developed, literally overwhelmed the Department of Pathology.
Tacey Ann Rosolowski, PhD:
Now, can I ask how—I mean, what were some of the mechanics of it? How were they distributed to people? How did people volunteer to participate in this and provide samples?
Bernard Levin, MD:
Now we’re testing my memory, but to the best of my recollection, there was a lot of publicity given by MD Anderson Public Affairs and by pharmacists. It was distributed through pharmacies in parts of this city.
Tacey Ann Rosolowski, PhD:
Okay.
Bernard Levin, MD:
And they were mailed back to MD Anderson. So the level of enthusiasm was unpredictable.
Tacey Ann Rosolowski, PhD:
And what year was this, about?
Bernard Levin, MD:
This would have been around ’81, ’82.
Tacey Ann Rosolowski, PhD:
Okay. So the gargantuan mess, how was that managed? (laughs)
Bernard Levin, MD:
Well, which we managed with the help of lots of people to develop all these and then develop and derive the data, which was subsequently published and, of course, was a good publication. Then also, of course, it benefited some patients who were found to have cancers. But we also learned that despite having an abnormality such as leaking blood into the stool, that some physicians didn’t take this seriously, despite our warnings that this could be a very serious finding. And then there were some patients who didn’t follow up. We actually never had the ability to follow the patients in the study. We just didn’t have the support, the financial support, to do a longer-term study. All we could do was a very short term ‘one time’ study. [00:49:3
Tacey Ann Rosolowski, PhD:
So what was the question that this particular study was asking?
Bernard Levin, MD:
It was the comparability in the field of several types of blood test, a more sensitive one and a less sensitive one, and the potential for interference by diet and medications. So there were a number of methodological issues related to the use of these types of occult blood tests that we hoped to answer.
Tacey Ann Rosolowski, PhD:
And what were the findings?
Bernard Levin, MD:
You know, I’d have to look at them again to answer that question. I don’t remember. If it’s important, I could find it, but it would take me a little bit of looking.
Tacey Ann Rosolowski, PhD:
No, that’s okay. I’m sure we could find the publication name and—
Bernard Levin, MD:
] Yeah, yeah, okay. That would help me. Constance Johnson and I would be at least two of the authors.
Tacey Ann Rosolowski, PhD:
Okay. I guess since you were comparing interference from diet and medication, did you also include with the kit a survey and ask the volunteers [unclear]?
Bernard Levin, MD:
Yes, there was a survey, I remember, included.
Tacey Ann Rosolowski, PhD:
Okay. Interesting. So what did you feel was the value or kind of long-term impact of that project?
Bernard Levin, MD:
It gave us some insight into the use of these agents in a community. It gave us this rather difficult-to-swallow understanding that even if you have an abnormality, that the follow-up could be very poor and that more needed to be done to educate the practitioner who receives this result as to its significance, and, perhaps even more so, how to make sure that the individual patient receives appropriate follow-up. So the lessons learned were perhaps even more related to what happened after the test than the test itself.
Tacey Ann Rosolowski, PhD:
Interesting. Now, this kind of leads to some of the kind of the story of attracting public awareness or creating public awareness of colorectal cancer, and I had a number of questions about that. Do you want to segue into that?
Bernard Levin, MD:
Yes. Yes, that’s good. Ask me.
Tacey Ann Rosolowski, PhD:
Okay. Because you were involved in the National Colorectal Cancer Roundtable and you were chair of the American Cancer Society Colorectal Cancer Committee and there were a number of other very public events that you took part in.
Bernard Levin, MD:
Right.
Tacey Ann Rosolowski, PhD:
Maybe you could talk a little bit about, first of all, that awareness challenge. I mean, it kind of surprised me, actually, that so many people volunteered samples at a time when colorectal cancer—there wasn’t really that much awareness about it, and people were certainly reluctant to talk about it.
Bernard Levin, MD:
Right. Well, you’ve nailed the topic on the head. You’ve hit the nail on the head. The issue is that we all felt, American Cancer Society in particular, that there was just not enough information that filtered down to people with family members or themselves about colon cancer, and that it’s not something anyone ever discussed. There were numerous campaigns to make it more public by utilizing important public figures, sports personalities and movie stars. Television personalities like Katie Couric became identified and became very involved and very important, made very big contributions to this. So that was a time when all of that was happening. Also around that time, a need for screening to become part of Medicare as a benefit was recognized and because I chaired the American Cancer Society's National Colorectal Cancer Round- table and co-chaired the Digestive Health Initiative's Colorectal Cancer Campaign of the American Digestive Health Foundation. I was invited to a White House conference. I participated on a panel at the White House in with Hillary Rodham Clinton, Donna Shalala and Ellen Levine [phonetic]. She was Editor of Good Hosekeeping, [
Tacey Ann Rosolowski, PhD:
And that was in 1998. So what was the purpose of that panel, and what did you feel it achieved?
Bernard Levin, MD:
1998?
Tacey Ann Rosolowski, PhD:
Yes
Bernard Levin, MD:
So that was the culmination. What did I think we got out of that? I thought that there was really enhanced public awareness, that the media were heavily oriented finally to the importance of colorectal cancer and that Katie Couric’s activities both on the air as a spokesperson, someone receiving a colonoscopy in real time, as well as, of course, the White House, made a big difference in public awareness.
Tacey Ann Rosolowski, PhD:
And she—let’s see. Katie Couric had helped establish the National Colorectal Cancer Alliance, is that correct?
Bernard Levin, MD:
Yes. Correct. And—
Tacey Ann Rosolowski, PhD:
And how—I’m sorry, go ahead.
Bernard Levin, MD:
Sorry. Go ahead.
Tacey Ann Rosolowski, PhD:
] No, I was going to ask how that connected into the event at the White House and some of the kind of publicizing and creating public awareness initiatives that you’ve been describing.
Bernard Levin, MD:
Well, I’m not sure how they were related, because Katie Couric was involved in that White House event. I don’t know the exact relationship, but certainly it didn’t hurt to have her as a spokesperson. The Alliance itself comprised physicians from Harvard, Bob Mayer, Robert Mayer, who’s still at Harvard at Dana-Farber; Ray DuBois, who then at Vanderbilt, subsequently at MD Anderson, and now at the Biodesign Institute in Arizona; and Anil Rustgi, who is currently president of the American Gastroenterological Association and head of the Department of Gastrology at Penn; and Bert Vogelstein, who is world-renowned researcher at Johns Hopkins; and, Mark Pochapin, who was the director of the Jay Monahan Center, who had been Katie Couric’s husband’s gastroenterologist, he now is at NYU. A, Dennie Slamon, who was not in the colon cancer field but was one of the scientists who deserve great credit for the discovery of Herceptin for breast cancer. Dennie was the individual person who chose the members of the Alliance on behalf of the Entertainment Industry Foundation.(EIF) He had been supported by the EIF for his work on breast cancer, and Katie Couric through the EIF approached him about assembling a group of scientists who could receive funds for research and education in colorectal cancer as well as enhance public and professional awareness of the disease. So the NCCRA would meet periodically in New York around Katie Couric’s schedule and review proposals for supporting research from its members, each of whom would come with a proposal, and then this would be implemented over time by the EIF. We would meet periodically and report on progress in the preceding year. Some of it was very basic research, like that done by Bert Vogelstein. Some of it was community outreach, which was that which I did with the fecal occult blood testing project. Some of it was community education such as Bob Mayer had done.
Tacey Ann Rosolowski, PhD:
So did the study of the occult blood testing kits that you conducted, was that partially funded by the Entertainment Industry Foundation?
Bernard Levin, MD:
Yes.
Tacey Ann Rosolowski, PhD:
Oh, I didn’t realize that. Hmm.
Bernard Levin, MD:
] It was funded by NCCRA, EIF through NCCRA.
Tacey Ann Rosolowski, PhD:
Interesting.
Bernard Levin, MD:
In a subsequent study also funded by the NCCRA (EIF) that has only been published recently, a very detailed analysis of diet factors and medications that relates to the risk of colorectal cancer was started by Constance Johnson when she was in the Department of Biostatistics at MD Anderson under the aegis of Don Berry and also Chris Amos, and myself. Chris subsequently left MD Anderson and is now at Dartmouth, and myself. Constance worked on this with other biostatisticians at MD Anderson, and finally after seven or eight years, the study was just published a few months ago.
Tacey Ann Rosolowski, PhD:
What I was going to say, was it unusually delayed, was that—
Bernard Levin, MD:
Yes, it was. It was supported at the time for a while by NCCRA. Why? Well, let me put it this way. Changes in personnel, changes in location, alterations in focus of the participants, difficulty in data collection, so all sorts of reasons, none of which are in themselves perhaps singularly unimportant, but all contributed. And I give Constance and Don Berry high marks for persistence.
Tacey Ann Rosolowski, PhD:
What were some of the findings in that study?
Bernard Levin, MD:
The basis for this study was to develop a model for prediction of risk. It’s the first step in predicting or developing a model that you could then apply to perhaps groups of individuals who then could be stratified according to their risk and, therefore, need to be perhaps investigated for colonoscopy or other screening test available. iI showed that inflammatory bowel disease of longstanding, confirmed that diets thought to be unhealthy were unhealthy, that physical activity was important in protection; all in all, nothing that was extraordinarily controversial. It helped to develop a numerical basis for future development of a model.
Recommended Citation
Levin, Bernard MD and Rosolowski, Tacey A. PhD, "Chapter 32: Occult Blood Testing and Public Awareness of Colorectal Cancer" (2013). Interview Chapters. 1368.
https://openworks.mdanderson.org/mchv_interviewchapters/1368
Conditions Governing Access
Open
