A Victory for Cancer Prevention

— Engaging, educating, and advocating for patients

MedicalToday

Listen and subscribe/follow on , , and , so you don't miss the next episode. And if you like what you hear, a five-star rating goes a long way in helping us share the story side of medicine!

This story is from the Anamnesis episode called Winning in Medicine and starts at 27:21 in the podcast. It's from former interim and deputy chief medical officer at the American Cancer Society.

Following is a transcript of his remarks:

My training was a bit unusual. I graduated from what was then Hahnemann Medical College and is now Drexel University School of Medicine. I graduated with honors in several areas and went to Temple University to do a straight medical internship.

What was unusual back then was that I went from my internship to basically a fellowship-level position with the National Cancer Institute. We were able to do that. I did 3 years as a fellow and 1 year as a staff associate at the Cancer Institute and then went to Johns Hopkins to do my second year of training. Back then it was called your first year of residency, but basically second year of training. When I finished that, I was ready to take my boards, which I took and passed.

Choosing a Brand-New Field

I made a choice then, which has also influenced my career path, and I had the option of going back to the National Cancer Institute. The path was a bit difficult because of some other issues not related to me and so I chose to go into the practice of oncology.

The only issue was that back then oncology was literally a brand-new field. There was no medical oncology as we know it today. It didn't exist.

My career was not a straightforward career. It had some deviations compared to what most people consider a medical career. I have, what I call, my medical career. That was, I was a practicing oncologist, and I actually shifted over to primary care internal medicine at one point, and then left medical practice to go ... I wanted to be involved in some business activities. I wanted to have that experience.

After I did some business activity, I left that company and eventually moved to Georgia, to Atlanta, to take a position as a medical editor at the American Cancer Society, which was interesting. It was fun and it got me engaged. But along the way ... At that point in time, the Cancer Society, they had advocacy in Washington, but they really didn't have a physician. The chief medical officer was terrific and he was knowledgeable, but they didn't have somebody who had been in the trenches on health policy. Anytime a question came through, I raised my hand. I said, "I can help you with that." That was on a variety of issues because I had had this rather broad experience in a number of arenas, and health policy was one of them.

In my role as a medical editor, I eventually moved on and I managed what was called Cancer Control Sciences -- which writes the Cancer Society's guideline, which is widely recognized for the prevention and early detection of cancer -- and then also got the title of deputy chief medical officer.

But having said that, we obviously, because of our group, writing the guidelines for mammography, for colorectal cancer, for the early detection of cervical cancer, physical activity, diet, nutrition, all of those things, we obviously had a strong interest in breast cancer prevention ... not so much prevention, in early detection and helping to improve the outcomes for women with breast cancer.

That's how I came to a situation, which was really one of the real moments in my career, the kind of moment you just don't forget, where you feel that maybe, just maybe, you made a real difference in getting a message across.

It was about 2007-2008, President Obama had been elected and one of the key things in his agenda was the Affordable Care Act, or the ACA. That was under debate for a considerable period of time, and a lot of discussion, and a lot going on around the country.

One of the issues of the Affordable Care Act is, which preventive services were going to be covered and how would they be covered? One of the rules they came up with, one of the pieces of legislation, was that they decided that ... there is an organization called the United States Preventive Services Task Force (USPSTF). That organization was a government organization, relatively independent, but they made the decision about recommending early detection techniques in cancer specifically, among other things, what are appropriate for people at an average risk. They'd been doing that for years. It was nothing ... they did it, they were deliberative, it was terrific.

Now, as part of the Affordable Care Act, they decided that they were going to use those rules to pay for preventive services for people in health plans around the country, commercial plans, Medicaid, whatever.

Therefore, its pronouncements, what it said would be covered or not covered, became really critical for a lot of people. They came out with a guideline for mammography for the early detection of breast cancer and they said that women over 50 should get a mammogram every 2 years, and that was not where everybody else was.

Most of us, including the Cancer Society at that time in fact, were beginning at age 40 every year. Now, we had a situation where Congress and this debate was basically saying, "We're not going to guarantee that if you're between the age of 40 and 50, if you want to get a mammogram, we're not going to promise that your insurance company's going to pay for it." That's a big deal and we knew that guideline was coming out on a Monday.

I had a conversation. I was part of a conversation with a representative of the task force about a week or so before these guidelines came out. I said to them, literally said to them, "Don't you think this is going to cause a bit of a problem?" And they said, "Really? You think?" I mean, they were serious. It wasn't sarcastic. They said, "You think it might?" And I said, "Well..." This was a Friday afternoon at 4:00 phone call. I said, "Well, you know, it just might."

The material came out on embargo. You're not allowed to talk to anybody about it, except a reporter can talk to you about it, but you can't distribute it. Nobody knows, and so I had spent ... and I was the designated spokesperson for the Cancer Society and I don't know how many interviews I did. Well, I don't know if it was Wednesday, Thursday, Friday, Saturday, or whatever. It was in that kind of frame.

Putting My Reputation on the Line

I did a whole lot of interviews with a whole lot of media outlets and every one, I said ... I voiced our concern about women's access to mammography for the early detection of breast cancer. I also pointed out about the impact of the ACA, that this parallel situation, the guideline #1, but now the Affordable Care Act saying that the task force rules will be the limits on what gets covered under your insurance policy.

Those two forces were coming together and I had said what I thought. I said I thought that it was very narrow and I thought it was wrong. That's the science that we knew at that point and that was the position I took. I did all those interviews and I put them in the can, so to speak, and that was Sunday night.

I was really worried, not only how all this would go down, but I was really concerned about my own personal ... I had put my own personal reputation on the line and I had said, basically, "The government has a problem."

Monday was fascinating. The guidelines were released, the interviews started playing regularly on all these outlets. The newspapers, Washington Post, came out and they had their article. Every one, there I was. I was saying, "We don't agree with this guideline. We're concerned about women having access to preventive healthcare." That played during the day and this is the moment I don't think I'll ever forget.

I had really invested a lot of myself, as I mentioned, in those interviews. They weren't just interviews. It really meant a lot to me and I was sitting there at 6:00 or 6:30. I was watching a major network news show and along the bottom they had what they call a chyron. A chyron is that little strip that goes along the bottom of your screen that says the latest news. All of a sudden, the chyron said, "Women are up in arms about what the task force has done." And you knew that they wouldn't have put that out there just to put it out there. I started shifting channels and that was the same story on every channel.

When Things Turn on a Dime

It wasn't about me. But when you say something as I said and you put your reputation on the line on something you believe, and you see a nation, a nation literally, rising up and saying ... and not all ... again, I want to emphasize, not because of me, but because it was important to people. It was important to women.

They just started pounding the phone and pounding their Congressional representatives and senators. The phone lines apparently lit up, saying, "You can't do this to us." Because they got the message, maybe an insurance company would let them get a mammogram, but there was no guarantee.

Wednesday, we got word from the Secretary's office that they were going to address the issue and legislation was introduced and passed, whatever the lot of other technicalities. But the bottom line, legislation was introduced and passed guaranteeing women the right to get a mammogram beginning at age 40.

The moments when you see something turn on a dime and when you see that activating communities -- in this sense, a very big community of women -- makes a difference and that the political and legislative bodies, the administration, they listened and they reacted immediately. Those moments don't happen very often, if they happen at all.

I was grateful and, frankly, blessed that I was in a position to make a difference, but I didn't make it happen. A lot of other people made it happen. I was just a small part of a much larger picture.

Other stories from the Winning in Medicine episode include "Early in COVID: A Win and a White House Call" and "Breaking Down Patients' Barriers."

Want to share your story? Read the Anamnesis Storyteller Tip Sheet and when you're ready, apply here!