CDC's PCa work on chopping block--this is getting personal with an AS study

SOS--Save Our Study: How you can help. See below.

By Howard Wolinsky

There’s a new sheriff in D.C., and research funding on prostate cancer along with other cancers and diseases has taken a hit already with more to come. This time a rare federally funded study on Active Surveillance (AS), is in the crosshairs.

Since 2023, I have worked with the U.S. Centers for Disease Control in developing a study on Active Surveillance with an emphasis on including minority men. The CDC research spins off a study on opinions on AS that I co-led for AnCan and Active Surveillance Patients International.

The CDC funded a $1 million grant to conduct a “re-fielding” of the original study, ensuring that the views on AS among minority men were included.

Now it looks like the three-year study is toast. Funding likely will end in fiscal 2026.

You can help. Write your Congressional delegation. Details below.

SOS—Save Our Study.

Advocating Against Funding Cuts

I asked you to join me in supporting ZERO Prostate Cancer’s efforts to lobby against cutting funding of the Department of Defense’s Congressionally Directed Medical Research Programs. This program ignored low-risk prostate cancers in recent years to focus on lethal prostate cancers. But I urged readers to help try to save funding—whether they happen to be high-risk, low-risk, or somewhere in the middle.

Prostate cancer advocacy is essential to ensure continued support for early detection and treatment options. We should all be in this together,

I felt we low-risk patients needed to pitch in to help the men with lethal prostate cancer.

In the end, that battle was lost, and a cut in funding adopted.

Now it’s happening again.

The march to cut federal health funding continues: The latest target is the Centers for Disease Control and Prevention (CDC), threatening prostate cancer screening, education, and prevention programs. FYI, CDC considers prostate cancer a public health issue because it is so common (the most common cancer in American men) and because it has a major impact on minority men.

Why This Matters to Us: The background

This cut hits close to home for us—and me as an advocate for patients on AS.

I gave a four-minute talk—yes, I can keep it short if I need to— during the American Society of Clinical Oncology meeting in February 2023. I described a study I co-led on patient opinions about Active Surveillance. I noted one deficit: There were few Black and Hispanic men among the 460 or so respondents.

A few days later, a researcher from the CDC contacted me and asked if I would be interested in refielding the study and including minority men. I did and worked for months with my CDC contact to develop a plan to be put out for bids.

The researcher, who put off retirement to see the study through, expressed skepticism that we would get funding. But CDC leadership quickly approved the proposal.

The CDC came through with a $1 million grant

In the world of medical research, it seemed like peanuts. But experts told me this was one of the largest grants the U.S. government had made for Active Surveillance research and advancing prostate cancer diagnosis and management for diverse populations.

New sheriff in town

When the Trump administration arrived in January, I started to get nervous about the future of study.

The Trump administration wanted to cut waste and inefficiency in government. Who’s against that? Also, it wanted to take the “woke” out of government programs, such as “diversity, equity, and inclusion.” Opinions may vary on this.

I thought the CDC study might be jeopardized, that the CDC researcher’s original instincts might be correct.

I got reassurances that we were funded and all was well. We met monthly to keep the study on track.

But the picture is bleak now.

On May 2, the Trump Administration presented its budget for 2026, which included a more than 25% cut overall cut to federal health spending, with the National Institutes of Health and Centers for Disease Control and Prevention facing the brunt of billions of dollars in cuts.

Things were especially tough at CDC, which has been a special Trump target since the COVID-19 pandemic.

The budget proposal almost halves the CDC budget by almost $3.6 billion, leaving it with a $4 billion budget. CDC's Division of Cancer Prevention and Control would be eliminated.

"This isn't a reorganization; it's a wholesale gutting of programs that save lives and reduce healthcare costs for all of us. Eliminating these efforts would reverse decades of progress," former CDC Director Dr. Tom Frieden said of the proposed budget

Back to the little CDC study on AS.

One collaborator in the study urged us—I’m an advisor-- to reach out to our networks and support ZERO Prostate Cancer’s effort to save funding. (Consider yourself reached out to.)

I asked the study collaborators if the study was facing a direct hit.

Principal investigator, Matt Cooperberg, MD, MPH, a urology professor at University of California, San Francisco, told us: “Very direct – because of this it’s looking like we will lose funding for our grant after this year. We haven’t heard anything official so have not passed on the bad news but it seems like the whole PRC program is getting killed. Definitely write your congress reps!”

But maybe we can turn the tide?

Act Now to Protect CDC Funding

ZERO Prostate Cancer is asking for our help. It’s time to write to your Congressional delegation and see if we can protect CDC funding for prostate cancer awareness, cancer prevention, and early detection programs. Act Now

If you write your Congressional delegation, please click the heart button just above the byline above. I want to know how many are participating.

ZERO’s government affairs VP, Ali Manson, gives us the scoop here:

On May 2nd, the White House released its draft budget proposal for Fiscal Year 2026 that includes devastating cuts to public health. Most alarming is the complete elimination of the CDC's Division of Cancer Prevention and Control.

This elimination would wipe out cancer registries that track cancer cases nationwide, end critical funding for state health departments' cancer prevention efforts, terminate prostate cancer awareness and education programs, and dismantle ALL cancer prevention activities at the CDC.

These programs save lives through early detection, education, and prevention. Without them, millions of Americans will lose access to vital cancer screening and prevention resources that could mean the difference between early detection and late-stage diagnosis.

Thankfully, these cuts are not set in stone. Congress can prevent them. Can you take just a minute or two to tell your legislators that these cuts are unacceptable to our community? Act Now

If you would like to learn more about these potential cuts, I invite you to read our latest Prostate Pulse entry. Thank you for your continued support in our fight to protect cancer patients and advance prostate cancer support.

Sincerely,

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UMiami’s Dr. Sanoj Punnen to Cover ‘The (great) biopsy debate’ at ASPI Webinar May 24

The debate over transperineal vs. transrectal biopsies continues, a critical topic in prostate cancer diagnosis. There have been four randomized trials in the past year alone with somewhat contradictory results, impacting prostate cancer management.

Active Surveillance Patients International (ASPI)’s monthly webinar will focus on these issues in a program entitled, “The great biopsy debate: Where do we Stand on transperineal vs. transrectal?”

Researcher Sanoj Punnen, MD, professor of urologic oncology at the University of Miami, will be the featured speaker.

(Dr. Sanoj Punnen, University of Miami)

The program will be on Saturday, May 24 from noon to 1:30 pm Eastern. Please rregister here: https://zoom.us/meeting/register/UZVDHmq9Rlyw6y_mqmK0hg#/registration

Dr. Punnen is Vice Chair of Research, Desai Sethi Urology Institute, and Co-Chair of Genitourinary Site Disease Group, Sylvester Comprehensive Cancer Center, University of Miami Leonard M. Miller School of Medicine. His research interests include prostate cancer biomarkers, imaging, and genomic markers for prostate cancer risk and monitoring.

He is the lead investigator on two prospective clinical trials validating the 4KScore test, a novel blood-based biomarker for predicting the risk of clinically significant prostate cancer and the need for biopsy. He is also the Principal Investigator on an ongoing NCI-funded clinical trial examining the impact of prostate MRI and tissue-based genomic prognostic signatures in men undergoing Active Surveillance for prostate cancer.

Please send questions in advance to: contactus@aspatients.org.

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The Active Surveillor Features Uropathologist Dr. Jonathan Epstein in May 17 webinar

The Active Surveillor is hosting a webinar entitled, “What You Need to Know About Your Prostate Biopsy—The New News,” featuring renowned uropathologist Dr. Jonathan Epstein.

Saturday, May 17 at Noon - 1:30 pm Eastern. Click here

Hosted by The Active Surveillor with ASPI and AnCan Foundation, the program will focus on men on early Active Surveillance but also consider those contemplating or undergoing radiation therapy or surgery.

Dr. Epstein recently launched Advanced Uropathology of New York after nearly 40 years on the faculty at Johns Hopkins University School of Medicine. His expertise in uropathology makes this a must-attend event for prostate cancer patients.

If you have questions for Dr. Epstein, please send them to howard.wolinsky@gmail.com.

Additional Prostate Cancer Insights

This month in my other blog, Prostate Cores: “Kidney stones/gallstones linked with prostate cancer?” Explore research connecting these conditions to prostate cancer risk.

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