A Call to Reform the USPSTF: Nothing About Us Without Us

What Is the USPSTF and Why Should You Care?

Most people have never heard of the U.S. Preventive Services Task Force (USPSTF). But its decisions have almost certainly affected your healthcare.

The USPSTF is an independent panel of medical experts, established by Congress, that evaluates evidence on preventive health screenings and recommends which screenings Americans should receive. Think mammograms, colonoscopies, blood pressure checks, and yes, PSA screening for prostate cancer.

Here's why it matters: Under the Affordable Care Act, insurance companies are required to cover, at no cost, any screening the USPSTF recommends with an "A" or "B" grade. When the Task Force says screen, your doctor recommends it, and your insurance covers it. When the Task Force says "don't screen" or stays silent, coverage disappears, and screening rates fall.

The Task Force was created in 1984 and currently consists of 16 volunteer members, primarily primary care physicians and academic researchers. They review clinical evidence and issue recommendations that ripple through every doctor's office and insurance plan in America.

And for 40 years, not a single voting seat has been held by a patient.

When Getting It Wrong Costs Lives

This isn't an abstract concern. We've lived the consequences.

In 2008 and again in 2012, the USPSTF recommended against routine PSA screening for prostate cancer. Screening rates fell. Men, disproportionately Black men at the highest risk of aggressive disease, were diagnosed at stages too advanced for effective treatment. The Task Force has since softened its position, but we continue to see patients paying the price of that decision today.

The data looked reasonable in the aggregate. But the men most harmed by that recommendation were never in the room when it was made.

Reform Has to Be Done Right

Secretary Robert F. Kennedy Jr. recently called the USPSTF "lackadaisical and negligent for 20 years" and vowed to appoint new members with "a clear mission." We share his frustration. But a "clear mission" set before examining evidence isn't reform; it's the opposite of scientific rigor. Badly done reform could be worse than no reform at all.

The Task Force's authority rests on one thing: the trust of the primary care physicians who translate its guidance into practice. Undermine that trust, and you don't reform the Task Force,  you hollow it out.

What's needed isn't political interference. What's needed is structural reform that makes the process more transparent and more representative.

Two Reforms That Would Actually Work

1. Open the Deliberations

The USPSTF's decision-making process is largely shielded from public view. Who they consult, what evidence they weigh in closed sessions, and how they navigate competing interests remain unacceptably opaque for a body with this level of influence. Public deliberations and a rigorous comment period would strengthen the Task Force's authority by demonstrating that the right voices are being heard.

2. Add Patient Advocates as Voting Members

The Task Force's own enabling statute calls for members with "appropriate expertise." Patient advocacy has developed exactly that. Multiple organizations train patient advocates to assess clinical trial data, interrogate methodology, and weigh evidence alongside researchers and policymakers. Graduates sit on FDA advisory committees and NIH study sections.

When the FDA's Oncologic Drugs Advisory Committee reviewed a prostate cancer treatment in 2023, patient advocates identified that the trial had excluded men over 75, precisely the population most likely to face this disease. That's the kind of insight clinicians miss. Trained patient advocates know where evidence ends, and assumptions begin. They understand populations historically excluded from clinical trials. They ask the questions specialists overlook.

The USPSTF should immediately add trained patient advocates as full voting members, with priority given to representatives from communities disproportionately affected by screening disparities.

We're Not Waiting to Be Asked. We're Demanding a Seat.

This is bigger than a single blog post or an organization. It's the foundation of everything we fight for: Nothing about us without us.

For decades, the prostate cancer community and patient communities across every disease have watched decisions get made about our lives, our screenings, our survival, without our voices in the room. That ends now.

But we can't do this alone.

Here's How You Can Help:

Send a message to Secretary Kennedy urging him to add patient advocates to the USPSTF. 

Send Your Message Now

Share this article with your networks. The more voices demanding this reform, the harder it is to ignore.

The time to act is now.

Courtney Bugler
President and CEO
ZERO Prostate Cancer