Chasing Dr. Ryan: Where does AS stand in research priorities of the Prostate Cancer Foundation?

By Howard Wolinsky

Tuesday, I finally had an opportunity to ask--kinda, sorta-- the president/CEO of the Prostate Cancer Foundation (PCF) some questions about the priority the 800-pound gorilla of prostate cancer research gives to active surveillance and localized prostate cancer.

In brief: not much. Patients like us are low down on the PCF research list. PCF, which I sometimes refer to as the Advanced Prostate Cancer Foundation, sponsors some research on AS, but its focus is on trying to cure patients with advanced cancers and improving their quality of life.

It’s understandable. Charles Ryan, MD, a renowned researcher on advanced prostate cancer and the head of PCF, and the other “generals” and strategists are fighting the last war on prostate cancer, circa 1993, when PCF founder Michael Milken was diagnosed with advanced cancer.

Active surveillance did not come along until around 1996 and hadn’t started to build momentum until 2014.

There certainly is an urgency to find a cure to spare men with metastatic cancer from the burden, pain, and fear of advanced prostate cancer. It’s called the “Snarling Tiger” for good reason.

(Our cancer is referred to as the Sleeping Lion.)

I have been asking the PCF since 2018 about how their research budget breaks down between the three major groups of prostate cancer patients—low-risk, intermediate-risk and high-risk.

PCF gladly accepts our millions in donations. But do we get a direct benefit with funding earmarked for AS and localized prostate cancer? I can’t tell you. And apparently, PCF won’t—or at least me,

I asked Ryan about this at least three times so far in 2022 alone. He responds to my emails cordially but never to this question.

This leads me to believe the proportion of research dollars for low-risk is so low that it would be embarrassing to make them public. Hard to believe they don’t know.

Based on the physical and mental burden of metastatic prostatic cancer, this group would get most of the funding. Deservedly so.

But what about helping those of us with localized cancers and those on AS, the Rodney Dangerfields of prostate cancer research? 

The Journal of Urology recently ran a study that broke down the population with PCa this way:

The three groups are about the same:

—Patients with low/very low-risk prostate cancer, 35%;

 —Patients with advanced disease, 32%;

—Patients with favorable intermediate-risk (20%) and unfavorable intermediate-risk (12%)  prostate cancer, 32%. 

The proportions are about the same.

PCF is sponsoring a new series “Prostate Health” on Sirius XM once monthly on the “Men’s Health” program hosted by Stacy Loeb, MD, a top prostate cancer researcher at NYU Langone and a recipient of PCF funding. Loeb and Ryan launched the series with an hour-long show on June 14 to discuss prostate cancer on a Father’s Day special.

(PCa guru Stacy Loeb, MD, host on Sirius XM)

I had just written Sunday about PCF’s Home Run Challenge and raised some questions about PCF’s dedication to AS and wondered what they have done for us lately. I was pleased to hear Loeb was having Ryan speak.

I hoped I could get him to answer my questions. I couldn’t get to him, but Loeb asked him my questions, sorta, kinda.

I don’t know how Sirius producers select callers. But the session was dominated by men with metastatic cancer.

The meeting, which I attended online, was what you might expect if you went to a general support group on prostate cancer with patients with cancers going from low-risk through high-risk.

Newly diagnosed low-risk patients often are intimidated by the scary questions asked by patients with more advanced cancers.

Then, there was the guy who wanted to know if a man could protect himself against prostate cancer by ejaculating often. Much levity. But a good question.

Loeb and Ryan said that there is some evidence to support this idea. I think 21 ejaculation per month was the magic number. Go for it—if you can, right?

No questions came up about active surveillance.

I had asked Loeb to ask Ryan my questions. She seemed reluctant but finally agreed to pass my questions on to her producers. I also sent the producers my questions via email.

Meanwhile, I tried multiple times to ask my questions live. My calls kept getting bounced because so many people wanted to participate. Finally, I got through but was told they no longer were accepting calls.

I asked if my email had a chance. Maybe. Loeb only read one email.

It was mine. But my questions were boiled down and simplified and didn’t really get to the points I had hoped to raise.

Here’s what I wanted to ask Ryan:

--What percentage of the Prostate Cancer Foundation’s research budget goes for active surveillance and localized prostate cancer?

--Why should someone on active surveillance donate to PCF?

Instead, Loeb asked:  “We got an email saying since a lot of patients these days are diagnosed with low-risk prostate cancer and may be doing active surveillance or following the cancer over time, they are wondering what the PCF’s initiatives are around active surveillance?”

Maybe it was a softball version to ask Ryan in a polite way, to help maintain a good relationship with their sponsor? Or maybe, they were trying to save time in the last minutes of the show?

(The final six minutes of the show--or 10% of the program--was devoted to Ryan’s answers.)

(Charles Ryan, MD, president and CEO of PCF.)

He conceded that PCF’s work emphasizes advanced prostate cancers.

Ryan said: “Frankly, we’re studying the mechanisms that lead to lethality in prostate cancer. It’s a huge part of what we spend our research efforts on because we want to reduce the death and suffering from prostate cancer. That’s been something we’ve worked on for 28 years, something we’re very proud of. There are many new therapies – therapies I’ve even mentioned on this call that started out with PCF grants.”

His views on AS? Apparently, AS is something best handled through the education of doctors and patients through its UroToday.com website, the new Sirius program, and e-pamphlets, etc.

Is that really enough?

Let’s flip the equation. What would patients with advanced cancer think if they were only provided with “education” and not research on their condition?

One top researcher told me PCF clearly needs to expand its scope and start funding more research proposals for localized prostate cancer, low-grade cancers, and active surveillance. “When PCF has cycles for applications, 99% of the projects that they fund are for metastatic cancer, castration-resistant prostate cancer, very, very advanced disease,” he said.

What can be done to research AS and localized prostate cancer?

I make some suggestions in this column, “MLB swinging for the fences to raise funds for PCF and prostate cancer research. Does AS even make the team?”

Some examples:

—What can be done to help patients stay on AS longer, such as managing anxious surveillance? (Many drop out within five to 10 years.)

--What can we learn from Sweden and Holland, where 90%+ of eligible low-risk patients go on AS vs. the anemic 60% in the U.S.?

--Can PCF research help advance the development of “liquid biopsies” and other techniques to reduce or eliminate transrectal biopsies, which can cause deadly sepsis and other infections?

--High-intensity interval training helps patients with low-risk prostate cancer. Can it suppress cancer in those with intermediate-risk cancer? What about diet?

Ryan said PCF aims “to help people who have been diagnosed with prostate cancer live better. So, we have a number of initiatives that we will be covering in (Loeb’s) Prostate Health Show and in subsequent months, we’ll be covering some of these topics of active surveillance and survivorship. … Many of the grants that we give out go to fund survivorship efforts and the other thing we try to do is help identify which patient can benefit from being on active surveillance.”

Ryan conceded that “a real challenge in the U.S. right now … is the underutilization of active surveillance.” About 60% of eligible patients with low-risk cancer opt for AS, a doubling since 2014 and a sea change from the 6% who went on AS in 2010 when I was diagnosed.

I was disappointed with Ryan’s response. I hope other organizations, such as Movember, which has become huge booster of AS, can help get Ryan & Co. to open their minds and pocketbooks.

Movember can steer the cancer warship at PCF. Through 10 campaigns, Movember says it has donated more than $50 million to PCF to support innovative prostate cancer research, funding 43 research awards in the U.S., Canada, and Great Britain.

I wrote Ryan another email after the meeting asking what PCF has done for AS lately, what percentage of its research budget goes for localized cancer and AS? I admit I feel like a broken record. I feel like documentarian Michael Moore chasing the elusive GM CEO Roger Smith in the 1989 film “Roger & Me” to ask him why Smith had shuttered the GM plant in Flint, Michigan, Moore’s hometown.

Why don’t you ask Ryan about funding AS research yourself at cryan@pcf.org? Please let me know how that goes.

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