Sometimes even patients who are trying to get help are forced to endure overtreatment, mistreatment, and even risk death. Excerpt from “Dr. Otis Brawley: Fighting Patient Mistreatment in America,” October 29, 2012.

OTIS BRAWLEY, Chief Medical Officer and Executive Vice President, American Cancer Society; Co-author, How We Do Harm: A Doctor Breaks Ranks About Being Sick in America

 

Ralph was a guy who called me in 2003 because I’d been outspoken about prostate cancer. Ralph was a wonderful human being. He and I had a lot in common. He was a white guy from Indiana, I was a black guy from Detroit – it’s still the Midwest. Ralph had had a Jesuit education as well. Ralph and I used to tell Jesuit stories and compare them.

Ralph had been forced to go to a local mall for prostate cancer screening by his wife. She had seen this advertisement from a hospital that they were having free prostate screening. He didn’t want to go, but she forced him to go. He had an abnormal measurement. He went to the doctor’s office he was referred to, and everyone in the waiting room had been screened at that same place. He didn’t like that place so he went someplace else.

He went across town to this young guy who had a new da Vinci robot. His hospital was advertising him. He liked this guy, and he got the da Vinci Prostatectomy for prostate cancer. He had one out of 12 biopsies positive with 20 percent having Gleason 3 plus 3 disease. If you’ve ever read the book The Emperor of All Maladies, I do sort of think of myself as Forrest Gump, because about three quarters of the people in that book I know personally. One of them is a guy named Don Gleason who did the Gleason scoring for prostate cancer. He never wanted Gleason 3 plus 3 prostate cancer to be called cancer. Don used to say, “People want to cut cancer out, so I want to call this adenosis.” Unfortunately the urologists, the surgeons, the treaters overruled this pathologist and called it cancer.

Ralph had this cancer. He got it cut out with the da Vinci robot. His PSA didn’t go down. He’s a smart guy, college educated. His prostate is in a bottle in somebody’s lab, and he still has PSA in his blood. He must have cancer somewhere. He starts freaking out. So he goes doctor shopping and he finally finds a radiation oncologist who, for $80,000 billed to his insurance, gives him I.M.R.T., basically radiation to the pelvis. This is done blindly, sort of a shotgun blast, maybe we’ll hit cancer there. Unfortunately Ralph ends up with every side effect you can imagine. When Ralph called me to talk about my feelings about prostate cancer screening, he had an ostomy on the left to collect stool, and an ostomy on the right to collect urine, because he had had a pelvic dissection. It was terrible.

Ralph and I talked about prostate cancer screening. He asked why I was so outspoken about prostate screening, and I told him I’d been an aide to David Satcher when he was surgeon general. I got to go to President Clinton’s apology for the Tuskegee experiment at the White House. The Tuskeegee syphilis experiment was a period of about 40 years where the U.S. government lied to about 700 men. Two weeks after that, I was back at the National Cancer Institute and I went to see a cancer center. When the guy from the NCI, the federal government agency that gives out millions of dollars goes to a cancer center, they have this dog and pony show that they put on.

In the intermission I happened to be sitting next to a marketing guy. That’s when I realized that marketing people are evil. This marketing guy started talking about their prostate cancer screening program at the hospital. He could explain to me that if they announced they were going to screen 1,000 men six weeks from now at a certain mall, he knew how much extra business they would get at the breast cancer clinic for mammography. Women would go there because if that hospital cares so much about their men, they’re taking their mammogram business there. He knew how much extra business they would get in their chest pain clinic. He knew the extra publicity they would get for free.

Once they get to the mall and screen 1,000 guys who volunteer over the age of 50, their previous years’ data for several years showed that 135 would have an abnormal screen and come to their hospital to figure out why it was abnormal. Even though 10 additional would have an abnormal screen and go to their competition, but they would get 135, charge an average of $3,000 to figure out why the PSA is abnormal. Of the 135, 45 would actually have prostate cancer. Of the 45 with prostate cancer, he knew the percentage that would get surgery, the percentage that would get radiation, the percentage that would get cryosurgery. Then he told me, if we screen 1,000 guys and diagnose 135 with an abnormal PSA and diagnose 45 with prostate cancer, this is the number of artificial sphincters we’re going to sell because this is the number of guys that are going to have incontinence to the point that diapers just don’t hack it for them. Then he apologized to me, because there is this new thing called Viagra on the market that screwed up his estimate of how many penile implants he was going to sell for impotence.

I’m an epidemiologist from the National Cancer Institute. I ask the money question. It turns out it really was not the money question. I ask, “If you screen 1,000 guys, how many lives will you save?” He took his glasses off, looked at me like I was a fool and he said, “Don’t you know? There has never been a study to show this stuff saves lives. I can’t give you an estimate on that.” It took me a second to realize that this guy knows how many artificial sphincters he’s going to sell if he screens 1,000 people, he knows how much money he’s going to make if he screens 1,000 people, but he doesn’t know if he is going to save a single life.

The American Urological Association recommendation for screening, which I like a lot, says, “Given the uncertainty of PSA testing results doing more benefit than harm, a thoughtful and broad approach to PSA screening is critical. Patients need to be informed of the risks and benefits of testing before it is undertaken. The risk of over-detection and over-treatment should be included in this discussion.”

Despite that, there is all this free testing still being done at all of these hospitals. There is one group that has vans that have been purchased by Kimberly-Clark. They go around with various doctor groups and do free screening in supermarket parking lots, and in the summertime they go around to state fairs. Why is Kimberly-Clark buying these vans? I don’t know if prostate cancer screening saves lives but it sure as hell sells adult diapers. Kimberly-Clark makes Depends undergarments.

There has been a prospective randomized trial of lung cancer screening that says if you screen 27,000 people at high risk for lung cancer – meaning they have smoked more than 30 years at a pack a day – you actually save 84 lives, but you cause instrumentation that kills 16. That’s science. We at the ACS recommend that people who have an extensive smoking history realize the double-edged sword of screening. Yes, it saved 84 people, but it caused 16 people to die premature deaths. By the way, there were still 340 people who died over 10 years. If you want to get screened, you should get screened.

Saint Joseph’s hospital in Atlanta has ads right now recommending that non-smoking women in their 40s who have lived in an urban area for more than 10 years get screened because, according to Saint Joseph’s hospital, they’re at high risk for lung cancer. Their business plan actually involves the fact that 25 percent of all non-smokers will have a false positive exam and your insurance will pay the fee to figure out why that exam was false positive.

In this country we have a form of corruption in medicine. We allow it all to happen. Who is at fault? It’s the doctors, the hospitals, the insurance companies, the lawyers, the patients, the patient advocacy groups – we all accept it. We all accept not being scientific, not being rational. We keep talking about rationing health care in the United States. We need to be talking about rational use of health care. If we’d been rational, bone marrow transplant would’ve only been available during a clinical trial in the 1980s and never have been offered in the 1990s.

I’ve come to realize that when you’re talking to doctors, it’s difficult to get a man to understand something when his salary depends on him not understanding it.

That was Upton Sinclair, by the way.