Mr. Biden's Prostate Cancer: Pay Attention to the Evidence

Patients and doctors make informed choices daily that don't turn out the way we would like. The recommendation for PSA testing in men over 70 was clear in 2014 and today: Do not do the test.

(Personal note: This blog has been updated with relevant links.)

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I am consumed by Mr. Biden’s prostate cancer and the surrounding controversies. So much so that I am waking up at 3 AM, agonizing on today’s updates and how the flames of controversy will be fanned further over the next 24 hours.

To start, there is an excellent review of prostate cancer screening in today’s New York Times, written by Gina Kolata. I urge you to read it.

I agree with essentially all the expert opinions in the story. I know several of them as friends and others by reputation. They are people I respect, and I consider their discussion of prostate cancer screening is on target. It is information that avoids the chatter and bloviating that rules the day. Clarity has been sorely missing in many discussions. This article helps to clear the fog.

Then there is the information released yesterday afternoon that Mr. Biden’s last PSA test was in 2014 when he was 71 or 72.

Not that the clarification will quell the debate. No one trusts managed news anymore. We need some more sunshine, and my gut says eventually we will get that sunshine. For now, it’s what we have, so let’s go with it.

We now know Mr. Biden reportedly has not had a PSA test for 10 years. That means this was not what we call an interval cancer, namely a cancer that appeared unexpectedly between routine cancer screening tests and would be more aggressive than most prostate cancers. It could have been, but we don’t know that.

Mr. Biden’s cancer was most likely present for years which is very typical for prostate cancers. Left alone, his cancer became larger over an extended time frame, as is the case for many untreated prostate cancers.

Having said that, many 82-year-old men have prostate cancer. The relevant question is whether they need to be diagnosed and treated. Most don’t. Mr. Biden wasn’t as fortunate.

We still don’t know how or why Mr. Biden came to the decision not to be screened.

Did he have a discussion with his physician and make the informed decision not to be screened? Or was there another compelling reason that he didn’t receive or wasn’t offered the test (I doubt it wasn’t offered)?

A little digging gives us some more perspective. For whatever reason, I haven’t seen any comments anywhere about this inconvenient fact.

So here goes:

Mr. Biden may not have been screened because there was a very specific, credible recommendation that he should NOT be screened given his age. Period. No informed decision, just “Do not screen for prostate cancer in men over 70.”

That was the advice in 2014. It remains the recommendation today.

To be sure, not everyone agrees. But in Mr. Biden’s specific situation it may have been an important consideration.

Mr. Biden and the Obama administration were well familiar with cancer screening. It was a hot button issue during the debate over the Affordable Care Act in 2008: what routine preventive health care procedures/discussions should be covered by insurance and which should not, including cancer screening?

As a result of that legislation, it was enshrined into law that insurance companies who offered health insurance under the ACA would have to cover whatever preventive tests had what is called an “A” or “B” recommendation from the United States Preventive Services Task Force, a group of independent experts who review available evidence regarding preventive care and make recommendations regarding which are proven to be effective and worthy of coverage and which are not.

That mandated coverage was a floor, not a ceiling. But insurance companies didn’t have to pay for any test or counseling that didn’t have the coveted A or B recommendation, which required a reasonably high level of certainty based on research and evidence that it was effective in preventing disease.

The task force had issued a guideline in 2012 regarding prostate cancer screening that was very clear:

Prostate cancer screening had a “D” recommendation, as in “Do not do this test.” No informed decision, no wiggling, no nothing. Simply don’t do the test. The evidence did not show any benefit at the time that the PSA test improved outcomes for men found to have prostate cancer. Insurance companies would be well within their rights not to pay for the test, although they could if they chose to do so.

What many of you probably don’t remember is that during the ACA debates the Republicans vigorously opposed its passage. “Keep the government out of the examining room. Health care decisions should be between you and your doctor,” etc. etc. The same arguments were made years later as efforts were undertaken to dismantle the program. It didn’t happen, although their general opposition continues today. And as I write this there have been cases before the Supreme Court whether the Task Force recommendations are binding, and whether the Task Force is a legitimate Federal advisory committee since it makes recommendations on behalf of the Federal government which have the force of law that some companies don’t want to be forced to pay for. The decision is pending.

Let’s pose another hypothetical:

Assume Mr. Biden got the PSA test after 2014 while still vice president and it became public knowledge even if it was normal. Now the Vice President would be in the position of having the government pay for his test while denying payment for everyday folks covered under an ACA plan.

As they say in politics, “Not great optics.”

You can’t get clearer than “Don’t do the test and don’t pay for the test.” Pretty simple and straightforward recommendation. But the typical man could not walk into their doctor’s office with the certainty that the test would be covered. Does “equity” come to mind?

The Task Force did update their recommendation on 2018 to the current one embracing informed decision making. But when it came to 70-year-old men, they stayed firm: D recommendation, don’t do the test. Those guidelines are currently under review and may change again based on new evidence.

Ultimately, Mr. Biden had what we call “guideline concordant care” as reviewed and recommended by a panel of independent experts, which then raises the issue of whether the Vice President or President should have some sort of higher standard of care as defined by another panel of independent medical experts.

That’s the recommendation offered by Dr. Ezekiel Emanuel, another eminent physician who is exceptionally knowledgeable on cancer and health policy. However, to state the obvious, the care Mr. Biden received was the care recommended by an existing panel of experts who are considered authoritative. How many committees do we need to advise us on how to care for our patients?

I will leave it to others to debate that topic. I am not going to tackle it here other than to say it is a question worthy of consideration, and I don’t have the answer.

Assuming our information is accurate, we can ask whether it is fair to look at Mr. Biden’s situation through the incredibly accurate retrospectoscope, when we know a lot more now that we knew at the time the decision to stop screening was made.

It is much easier to look back and say what should and should not have been done in a moment. I call it the “coulda, woulda, shoulda” view of medical decision making, the kind of analysis that gives doctors heartburn when their treatment decisions are questioned because the outcome may be less than expected or desired.

It is quite something else to make those decisions going forward without the benefit of hindsight. And at that moment, the proscriptions on screening were very, very clear: don’t do the test.

This discussion is not abstract for me.

There is my historical perspective, since I was in the thick of the argument for years as a result of my role at the American Cancer Society where at one time I managed the Society’s group that developed their well-regarded cancer screening guidelines. There is also my personal perspective as a 78-year-old man (there: I said it. Please don’t hold my age against me) who has to deal with the question as part of my regular health care.

Every year I get a physical. I am in pretty good condition, physically active, mentally ok (although some might wonder), exercise quite a bit, etc. etc. Every year I must decide whether to get that darned PSA test. I know what I know about the test and probably know too much—which has its own problems, leading to analysis paralysis. I also have opinions from experts whether to get the test (they uniformly say “no”).

Sometimes real life gives you a kick in the ass and helps you focus in a way all the theorizing and pontificating does not (did someone say “bloviating?”).

One year I had a dramatic increase in my PSA, which led to considerable anxiety. Fortunately, it turned out to be a false positive due to infection, but it wasn’t without considerable angst. Even Dr. Google got into the mix, when my searches for current updates quickly became ads for burial insurance and mortuaries. (Really!)

I understand this commentary is not going to close the question of what Biden did and why he did it, or what should be shared with the public or what is private. I get all of that. I am incredibly concerned when I hear smart folks say that every expert they know except maybe 2 say he should have been tested. That simply doesn’t comport with the facts and the evidence.

Putting Mr. Biden aside, there are so many pieces to this puzzle.

Whether to screen, whether to treat, whether a man would be better off with treatment or without, whatever. These are questions that have haunted us for years when it comes to prostate cancer, its screening and its treatment and we are not about to solve those questions through sound bites, quick comments, or conspiracy theories colored by inuendo of a cover-up.

All I can deal with are the facts as I know them. And as I know them, I understand what was done and why it was done.

It was not malpractice to avoid the PSA test. It was a viable option, a fork in the road, and a medically acceptable and justifiable choice was made when it was made. Some would go so far as to say it was absolutely the correct decision NOT to get the PSA test. The odds were overwhelmingly in his favor that he would not develop a serious prostate cancer. In his situation, the odds did not play out in his favor.

As patients and physicians, we make decisions like that every day that may not sit well with from the vantage point of time.

That is our reality, and we live it every day—for better or worse. Not everything turns out the way we want it to.