MLB swinging for the fences to raise funds for PCF and prostate cancer research

Does AS even make the team?

By Howard Wolinsky

It happens every June.

Now through Father’s Day, June 19, Major League Baseball (MLB) players are hitting four baggers to raise funds for prostate cancer (PCa) research. MLB’s Home Run Challenge donates the money to the power-hitters at the Prostate Cancer Foundation.

The Home Run Challenge invites baseball fans to “Keep Dad in the Game” and support cancer research by pledging a donation at HomeRunChallenge.org for every home run hit. Fans may also make a one-time donation. Every dollar raised through the Home Run Challenge is granted to PCF to fund critical research “to defeat prostate cancer and improve early detection methods.”

Over the past quarter century, the Home Run Challenge has raised more than $70 million for prostate cancer research, with MLB players hitting a total of 5,127 home runs.

As the late Chicago Cubs announcer Harry Caray might have said: “Holy Cow.”

It seems fitting that America’s national pastime tips its cap to prostate cancer, the most common non-skin cancer in American men, which will be diagnosed in 268,490 men this year--about 20,000 over 2021--and will kill 34,500, about the same as 2021, according to the American Cancer Society.

Baseball ought to take prostate cancer seriously. So many legends of the national pastime have been diagnosed with and even died from prostate cancer. You could field a fantasy baseball team of prostate cancer patients.

Players include Joe Torre of the New York Yankees, Tommy Lasorda of the LA Dodgers, Cal Ripken Jr. of the Baltimore Orioles, Andre Dawson of the Montreal Expos and Chicago Cubs, Ken Griffey Sr. of the Cincinnati Reds, and Carlton Fisk of the Red Sox and White Sox, and Stan “The Man” Musial of the St. Louis Cardinals.

(I wonder how many of these men could have qualified for Active Surveillance (AS) rather than active treatment with or radiation.)

***

As a low-risk prostate cancer patient on AS, I am curious about what research the Prostate Cancer Foundation does for patients with localized cancer and AS.

PCF’s mission is to research to find a cure and help with early detection. I donated to the Home Run Challenge. You should, too.

But I have asked PCF several times over the years, how much PCF earmarks for research to help low-risk patients like us?

I’m still waiting for an answer.

***

Most (60%) of patients with low-risk prostate cancer now go on AS vs. 6% when I was diagnosed in 2010.

We have become a force to be reckoned with. The goal of the American Urological Association is for 80% of newly diagnosed low-risk patients to go on AS--ASAP.

Maybe PCF can help uncover what can be done so we can attain that 80% goal or even shoot for the 90%+ level attained in Sweden and Holland?

***

I found some studies on AS and low-grade cancer that the PCF has funded. But overall, how much of its funding does PCF spend to research AS? This remains a mystery.

On May 18, I emailed PCF’s new CEO, Charles Ryan, MD, a highly respected expert on developing novel therapies for patients with advanced and recurrent prostate cancer, to ask about PCF’s funding level for research on low-risk prostate cancer and AS.

I wrote:

“Chuck,

Hope all is well.

This home run campaign is impressive.

But can you tell me what % of your research funding goes for Active Surveillance/low-risk prostate cancer? I have asked several times over the years but have yet to get a response.

Howard Wolinsky”

No response.

You can ask Ryan yourself: cyran@pcf.org. Let me know if you get a specific dollar figure.

***

Occasionally, I have referred to the foundation as the Advanced Prostate Cancer Foundation. I have suggested that adding “advanced” to the foundation’s name may more accurately describe what the foundation does. 

The PCF’s webpage states: “PCF has been responsible for raising close to $1 billion in support of cutting-edge research by more than 2,200 research projects at 245 leading cancer centers in 28 countries worldwide. Since PCF’s inception, and through its efforts, patients around the world are living longer, suffering fewer complications, and enjoying better quality of life. PCF is committed to creating a global public square for prostate cancer, in service to our mission of ending death and suffering from the disease.”

The PCF said in its annual report for 2020-2021: “Since PCF opened its doors in 1993, the death rate from prostate cancer has dropped a full 52%, offering great long-term hope.”

PCF has every reason to be proud of its record.

Several prominent researchers have told me privately they are grateful to PCF for the boost it gave them as young investigators. They agreed the foundation could do more to research AS. But they don’t want to speak publicly and bite the hand that feeds.

They fear the 800-pound gorilla: The foundation is doing good work on more advanced prostate cancer. Isn’t that enough?

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 could the Prostate Cancer Foundation do for those of us with low-grade prostate cancer?

PCF supports early detection. So how about more research on “liquid biopsies” to diagnose prostate cancer early and reduce the use of and maybe eventually eliminate biopsies? A biopsy-free journey would be most welcome for patients on AS and others.

PCF has developed some drugs for patients with advanced prostate cancer that have the potential of helping people with lower-risk cancers. Maybe this work can be accelerated?

How about researching ways to keep patients on AS longer and postponing, reducing, or avoiding the side effects of treatment? Many patients (too many) on AS switch unnecessarily to treatment.

Maybe PCF could make it a priority to find ways of addressing anxious surveillance and reducing and preventing anxiety, which pushes a lot of men to unnecessary treatment? Or how about sorting out whether high-intensity interval training can help patients with intermediate-risk prostate cancer as it does patients with low-risk cancers? Or maybe more research on the benefits of diet to patients on AS?

Do you have some ideas?

***

Charity Navigator monitors how well charities do in serving their constituents.

In the latest data, PCF rates three stars out of four with an 84.5 out of 100 rating in the “Give with Confidence” Score. A triple for PCF. Not bad. 

(This compares with 97.4% for ZERO: The End To Prostate Cancer, which rates a 4. A four-bagger for ZERO.)

Charity Watch gives PCF an A Grade, noting that 80% of the funds that it raises goes for programs and the rest for overhead to raise funds. It costs PCF $9 for every $100 it raises.

(Some of these numbers may be outdated because of delays in filing or on the part of the IRS.)

Dr. Jonathan Simons, Ryan’s predecessor, made the #12 slot in compensation among charity execs with $1.35 million, including $620,000 in bonus and incentive compensation in 2020, according to Charity Watch.

Simons ranked fourth among top execs for disease-based charities, after the American Heart Association ($2.3 million), Cystic Fibrosis Foundation ($1.7 million), and Alzheimer’s Association ($1.4 million).

You can do well by doing good.

***

Recently, I helped organize a confab of the world’s leading AS researchers along with patients and advocates for a webinar “Your Voice in the Future of Active Surveillance.”

There had never been an event like this. We used this program to share recommendations on the future of AS from programs last winter held by Prostate Cancer International (PCai)/University of Maryland and a separate one from Movember, which recently has made AS a research priority. (I participated in both of these programs.)

Nearly 400 AS patients, advocates, clinicians, and researchers registered for the Active Surveillance Patients International-AnCan webinar on April 22, 2022. 

About 200 attended the session live. Attendees came from 20 countries, from Canada and the United States to Australia, Brazil, Bulgaria, Hong Kong, Pakistan, and Singapore plus the usual suspects in Europe.

We featured leading researchers such as Dr. Laurence Klotz, of the University of Toronto,; Drs. Chris Banga and Ola Bratt, who pioneered AS in Europe, and Drs. Peter Albertsen, and Timothy Witt, who pioneered AS and observation in the United States.

The session was supported and endorsed by EUROPA UOMO, MaleCare, Movember, PCai, PCRI, PHEN, the Prostate Forum of Orange County, Prostate Cancer Foundation BC, Prostate Cancer Support Canada, TheActiveSurveillor.com, the University of Maryland, and the Walnut Foundation. ZERO provided promotional support. 

***

Where was PCF?

On February 26, 2020, I invited Dr. Ryan to participate in this meeting. After all, PCF’s name implies it is interested in all prostate cancer patients.

I told him, “We'd like to hear about PCF's vision on AS.”

On March 1, Ryan wrote:

“Hi Howard

Thank you for this invitation.

I am not available to participate in this due to a clinical conflict on that day. 

Thanks again,

Chuck”

PCF’s views would have been welcomed. Instead, it was MIA.

***

Some history.

The April 22 meeting fulfilled some dreams. It had its roots in the formation of Active Surveillance Patients International in 2017.

Icelander Thrainn Thorvaldsen and I suggested we hold an international meeting of patients and doctors in 2019 in Reykjavik, midway between North America and Europe. That meeting didn’t happen for a variety of reasons. 

But three years later, ZOOM made a meeting possible and saved a ton on airfares and hotel rooms and imncreased accessibility.

The original idea was ambitious for our fledgling organization. We had lined up the world’s leading AS researchers and some funding. But suddenly the funder pulled out because of internal problems within its organization.

Also, along the way, I had found firsthand how major cancer drug makers and equipment manufacturers wouldn’t support our meeting on AS. There was a disconnect. These organizations didn’t view us as their market. But they ignored the fact that in effect patients on AS form a community with patients with more advanced cancers. We are the so-called “Reluctant Brotherhood.”

 Mike Scott, of Prostate Cancer International, an early advocate for AS, caught wind of the ASPI plans for Iceland. He tried to hitch a ride with us and planned a research project on the future of AS.

We at ASPI tried to work with Mike at PCai to make the meeting happen.

The Prostate Cancer Foundation seemed interested. After a screening call, Mike and I ended up in May 2018 in a meeting with Howard Soule, PhD, executive vice president and chief science officer for the PCF.

Honestly, looking into the retroscope, Soule mainly seemed interested in pumping us for information about what we were up to. We bared our souls and extended our hands. (This only is my recollection. I didn't ask Mike for his.)

Soule wished us luck and suggested some organizations that might fund the research and meeting--American Cancer Society, American Urological Association. Anyone but the Prostate Cancer Foundation.

I wrote an email to interested parties back then, sharing my disappointment:

“Let me note, PCF does not have a reputation for supporting research on AS. It's more like the Advanced Prostate Cancer Foundation. So it was no surprise that Soule said he couldn't financially support us--it was outside his mission set by his board. He said he has to stick to his mission, no way diminishing the importance of the ASPI program.”

He joked (?) that he’d be fired if he recommended that PCF fund a project such as the one we proposed.

Finally, Scott in December 2021, with a grant from the Patient-Centered Outcomes Research Institute, held the two-day virtual meeting on the future of AS, the one we originally planned for Iceland. The work resulted in the formation of PCa AS Research Initiative, to promote research on AS, headed by Minhaj Siddiqui, MD, of the University of Maryland.

***

PCF was created in the image of its founder, Michael Milken, who in 1993 had been diagnosed with advanced prostate cancer. AS dodn’t become visible on the radar until three years or so later. 

PCF’s website gives its founder’s origin story, The part having to do with prostate cancer, anyway.

“Three years after Mike Milken begins his legendary career on Wall Street, his wife Lori informs him of the terrible news that her mother has been diagnosed with breast cancer. Mike begins his education about medical research – an area he’ll focus on, and improve, over the following four-plus decades. At the time, it had only been a year since President Nixon declared the nation’s ‘War on Cancer’ [in 1971]. Mike’s quest for knowledge covers not only the science but also the infrastructure and financing to support research.”

When he was diagnosed with prostate cancer, Milken fought back with hormone therapy, radiation, diet change, and alternative therapies. His remission helped him decide to dig deep into prostate cancer “to keep men in the game.”

His determination and vision has helped thousands and thousands of patients with prostate cancer.

Milken also changed the way many charities work to follow the example of venture capital firms with quick results for maximum impact. The approach is known as “venture philanthropy.”

No doubt, PCF has done well for patients with advanced prostate cancer.

But I’ll ask again: What has PCF done for localized prostate cancer and AS lately?

***

PCF describes Milken’s “legendary career on Wall Street.” 

It was long ago. It was a different life for a man who went through a transformation.

Milken was known as the so-called “junk bond king” and the symbol of the insider trading scandals in the 1980s.

In 1989, Milken was convicted of securities fraud and racketeering. He served 22 months. He was diagnosed with prostate cancer after getting out of prison.

In February 2020, citing Milken’s “incredible work” on prostate cancer, President Trump pardoned Milken, with the support of Trump lawyer Rudy Giuliani, media titan Rupert Murdoch, GOP leader Rep. Kevin McCarthy, and GOP mega-donor and Las Vegas businessman Sheldon Adelson, and others. 

He has done a lot for patients with advanced prostate cancer. I hope some leaders in prostate cancer can get him to see the value of helping patients on the other end of the prostate cancer spectrum.

Can Milken spare a litle love for AS?

***

As patients are at best are the Chicago Cubs of prostate cancer,

The Cubs were known as the “lovable losers” for their losing streak of 108 years. Cubs fans had become accustomed to chanting “maybe next year” and cheering their team into the playoffs, only to have their hopes dashed.

Or, at worst, we patients on AS are considered to be in the minor leagues, along with Montgomery Biscuits, Vermont Lake Monsters, Savanah Sand Gnats, the Omaha Storm Chasers, Richmond Flying Squirrels, Albuquerque Isotopes, and the like.

(I suppose some prostate cancer patients can relate to the Isotopes.)

Patients with localized prostate cancer apparently are playing in a different league from the vaunted New York Yankees, Atlanta Braves, and Houston Astros or those with advanced prostate cancer.

***

We patients on AS won the lottery, at least as far as our diagnosis and our potential to live with cancer and not die from it.

But we had been easy to ignore or hard to take seriously since our slow-growing prostate cancer doesn’t pose an immediate threat to life.

We fuss about biopsies while some patients with more advanced cancer wrestle with death and others cope with side effects such as impotence, incontinence, hot flashes, and brain fog.

Patients on AS often can be lost in peer support groups that include others with more advanced prostate cancer. Only in the past five years or so have we had our own AS and low-risk peer support and advocacy groups.

Likewise, the Rodney Dangerfields of prostate cancer have received little to no respect or funding for years. But we are gaining attention as our numbers have grown. In a decade, the proportion of candidates for AS who opt for this management strategy has increased dramatically.

Those of us with low-risk to favorable intermediate-risk prostate cancer make up just over half of patients newly diagnosed with prostate cancer. And finally, in increasing numbers, we are going on AS, close monitoring to avoid or delay radical prostatectomies or radiation.

Only 6% of patients with low-risk prostate cancer went on AS in 2010 when I was diagnosed. Now, it’s 60%. 6% to 60% in about a decade is a sea change in slow-moving medical science. The proportion doubled between 2014 and 2021.

The American Urological Association is calling for 80% of us to follow AS—ASAP.

PCF is creative and innovative. It has sponsored prostate cancer research that has made a difference.

I still hope they will change direction--a little at least--and make AS more of a priority.

PCF held its annual scientific retreat last fall, opening the event to patients. For the first time, there were breakout sessions for patients, including one for patients on AS. A small step.

They can do more.

I hope PCF will follow the example of Movember, the global men’s health movement based in Australia.

Since 2003, Movember has raised over $710 million to fund 1,200 men’s health research programs in 21 countries.

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 know AS has become a top research priority for Movember. I have communicated with some of its leaders about this. I also participated in a group of North American and European patients to help decide what Movember should emphasize in its AS research.

I hope Movember’s change in its prostate cancer research priorities will rub off on its long-time collaborator, the Prostate Cancer Foundation.

***

It’s said that the generals are always preparing for the last war. (It’s also said that Winston Churchill said that.)

That means that armies essentially are using the lessons learned from the last war in the hopes of winning the current one. But every new war presents its challenges.

Could the same may be true for the war on prostate cancer?

When PCF was started in 1993, about 20% of men who were newly diagnosed with prostate cancer had bone metastases. Thanks to the work of PCF, the National Cancer Institute and an army of researchers and clinicians that percentage has dropped to a fraction.

As the PCF would say and take credit for, the number of prostate cancer deaths now is about half of what it was in the 1990s because of new treatments and PSA screening.

Concerns continue about a decline in PSA testing and the potential for growth in late diagnoses and increasing death rates.

But the nature of the “war” against prostate cancer has changed with so many more men with low-grade prostate cancer on AS and increasing proportions in the near future.

It’s high time that the generals in this war on prostate cancer, including Milken and Ryan, reevaluate their priorities and expand PCF’s portfolio to include localized cancer and AS..

It’s time to open a two-front war.

Switching back to baseball imagery: It could be a grand slam for everyone.

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To which prostate cancer charities do you donate? Take a quick survey: https://bit.ly/3tcc6dP

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Illinois Gov. JB Pritzker on June 10 signed legislation requiring health insurance and managed care plans to cover prostate screenings effective Jan. 1, 2024.

Under Illinois House Bill 5318, health insurance and managed care plans will be required to provide prostate cancer screenings without imposing a deductible, coinsurance, copayment, or any other cost-sharing requirement. This legislation is effective Jan. 1, 2024.

"Preventative healthcare is the best healthcare of all, and it shouldn't break the bank to access it," said Pritzker.

(I knew the billionaire JB well when he was a Chicago venture capitalist and I was a Chicago Sun-Times reporter during the internet boom. Remember when then Illinois Gov. Rod “Blago” Blagojevich tried to sell Pritzker President Barack Obama’s Senate seat? https://www.huffpost.com/entry/unexpurgated-blago-barack_b_149769)

The Active Surveillor testified on the prostate screening bill back in February, representing patients and advocates:

I told legislators:

“I am writing to ask that the Illinois General Assembly, under your guidance, support cost-free prostate cancer screening. This is a life-and-death issue for low-income and/or underinsured men, especially in Black and Latinx communities.

“I am co-founder of Active Surveillance Patients International (aspatients.org), an advocacy group for men with low-risk prostate cancer, and co-founder of the weekly virtual support group for low-risk men on the AnCan (ancan.org) platform.

“Please note: Black men have the highest prostate cancer incidence and mortality relative to other U.S. racial/ethnic groups. Latinx men also have a higher risk of PCa diagnosis at a later stage and are less likely to receive guideline-concordant care.

“Free prostate screening will lower one of the barriers to reaching these men and ensure that they get proper medical attention in a timely fashion. The pandemic has demonstrated how delays in screening may lead to delayed treatment and increased deaths.”

Glad we won. Thanks, JB et al.

I’d like to see this idea adopted in other states. Also, I’d like to see a law adopted requiring doctors to inform patients who have been diagnosed with very low-risk to favorable intermediate-risk prostate cancer of all their options for disease management, including Active Surveillance.

More on what happened with the rise and fall of PSA, the test: https://bit.ly/3MNRGia

About 70% of eligible men used to undergo PSA testing in the U.S. Because of all the controversy, that number has dropped to 40%. As a result, metastatic prostate cancer has been on the rise, according to recent research.

While we’re at it, how about signing my petition calling for transrectal biopsies to be phased out: https://chng.it/7bQsWSfK

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