Patients Rising

Childcare work is one of the lowest-paid jobs in the country — and one of the jobs the rest of us can't function without. A Racine household working in childcare ended up owing $180,000 to Wisconsin's priciest hospital. They took care of other people's kids. Nobody took care of them.

Read her story here: https://hubs.ly/Q04rBjnj0

Your doctor spent years training to diagnose illness, evaluate evidence and recommend the treatment that's right for you. Even then, receiving that care isn't guaranteed.

Coverage decisions can be delayed or denied for a variety of reasons, leaving patients to navigate appeals, paperwork and uncertainty while trying to focus on their health. When one in five privately insured adults reports being denied physician-recommended care, it raises an important question ... Who should have the final say in a patient's treatment?

Froedtert takes 340B drug discounts at every acute-care facility it runs. It also charges private insurers nearly 4x Medicare rates — the highest markup of any hospital system in the state, per RAND. Both of those facts are true about the same hospital, at the same time.

A Racine, Wisconsin, family earning $17,000 a year ended up owing it $180,000 — over 10 years of their entire household income — for care at "the highest-priced hospital in Wisconsin." Statewide, 65% of the bankruptcy filings we reviewed had a 340B hospital as a creditor — the highest rate in our six-state investigation. Aurora Health Care alone showed up in 48 of 104 cases. The discount program was built to protect patients from exactly this. It isn't.

There is a ritual in cancer wards all over this country. When a patient finishes treatment, they ring a bell. It means: I made it. I got to the other side. Family cheers, nurses clap, and for one bright moment the fight is behind them.

Julie Breneiser will never ring that bell. Neither will her son. Neither will her daughter. Not because their treatment failed — but because, for them, the treatment never ends.

Julie lives with Gorlin syndrome, a rare genetic condition most people have never heard of. By her own count, she has had around a thousand basal cell carcinomas. A thousand. And as one of her doctors once told her, in a sentence she has never forgotten: you will never be cancer free.

Hear more about her story in The State of The Patient Podcast: https://hubs.ly/Q04r2VMm0

Julie lives with Gorlin syndrome, a rare genetic condition whose most burdensome feature is basal cell carcinomas that arrive again and again, often starting in childhood. By her own count, she has had around a thousand. Both of her adult children inherited the condition; her daughter was formally diagnosed at seven. And unlike nearly every other cancer, there is no finish line. "We can never ring the bell like people do at the end of chemo," she says. "As one doctor told me — you will never be cancer free."

Her community has twice watched a promising topical treatment clear patients' skin in trials, then vanish when the results fell short of the FDA's usual fifty-percent endpoint. "It's like reaching for the golden apple," Julie says. "You take a bite — and then the apple's taken away from you." Patients went from clear faces back to surgery every three to six months. But Julie's chapter doesn't end at the loss — because in October 2025, she sent a LinkedIn message that may change her community's future.

Learn more about her incredible story here:

A Thousand Cancers, and No Bell to Ring: Life With Gorlin Syndrome Julie Breneiser has had about a thousand basal cell carcinomas. Her community lost a treatment that worked. Here's their fight — and what comes next.

Kay Frazer, a retired dentist from Texas, has seen a dermatologist every six months for nearly twenty years. Three months after a clean checkup, she noticed a little pinpoint spot on the right side of her nose — "just a little pin dot, a little red spot" — and watched it. Three or four weeks later, it hadn't gone away. So she made the appointment herself.

A prescription cream did nothing. A biopsy gave the spot its real name: basal cell carcinoma. Mohs surgery took care of it — and Kay is quick to say her dermatologist missed nothing, because there was nothing to see three months earlier. That's precisely her point, and the cheapest, most powerful advice in the entire episode: be very diligent about paying attention to your own body. The system didn't find Kay's cancer. Kay did. Twelve years and one more basal cell later, she still goes back every six months — and she still checks the mirror in between.

Hear more about her story in The State of The Patient Podcast: https://hubs.ly/Q04r2Dyf0

Mark Smith spent four decades working in telecommunications in Tennessee, much of it outdoors — a fair-skinned kid of the sixties who got sunburned plenty before anyone knew better. His first basal cell announced itself on his left cheek: it bled when he shaved, with no nick to explain it. Mohs surgery handled it, but took more tissue than he expected.

So when a second cancer appeared — this time on the tip of his nose — Mark couldn't stop doing the math on his own face. "If they have to take that much off my nose," he remembers thinking, "it'd be disfiguring." He did his own research and chose a different path, a form of radiation that spared him the scalpel. It worked, and he's glad. But it asked twenty separate visits of him, and it isn't an option for everyone. Either road, as Mark tells it, the system hands you a choice nobody wants: your face or your time. Which is why, when Terry described a patch in development that might someday spare patients both, his answer came without hesitation: "I would not be opposed to trying that before they'd have to lay a knife to me."

Listen to his story on the State of the Patient Podcast: https://hubs.ly/Q04r2vjM0

A diagnosis is never just a diagnosis. It becomes a series of decisions, uncertainties and tradeoffs that ripple through every part of life. In this episode of the State of the Patient Podcast, Terry Wilcox examines skin cancer through the experiences of people whose journeys could not be more different, revealing how the same disease can lead to vastly different outcomes depending on access to care, emerging treatments and the pace of medical innovation.

Listen to Episode 2 of the State of the Patient Podcast here: https://hubs.ly/Q04qZh3k0

A federal program created to help low-income patients is showing up in an unexpected place: bankruptcy court.

A new Patients Rising report reviewed more than 900 bankruptcy filings across six states and found that nearly half listed debt owed to nonprofit hospitals participating in the 340B drug discount program. While the research doesn't suggest the program causes bankruptcy, it raises an important question: if hospitals receive federal discounts intended to support vulnerable patients, why are so many of those same hospitals appearing as creditors in medical bankruptcies?

Read what the data uncovered, why Patients Rising is calling for greater transparency and the reforms we believe could help ensure 340B savings reach the patients the program was designed to serve in a white paper we crated reviewing 903 filings in six states.

Read more here: https://hubs.ly/Q04qMrD50

When someone you love is fighting for medically necessary care, you quickly discover that the biggest battle isn't always the illness itself. Sometimes it's the paperwork, the denials, the delays and the exhausting effort it takes to secure the care their doctor has already recommended. Families often find themselves navigating a maze of phone calls, insurance policies and uncertainty, all while trying to support the person they love.

For one daughter, watching her mother face those challenges became a turning point. What began as a deeply personal experience grew into a mission fueled by determination, compassion and the belief that every patient deserves timely access to the care they need. Her story is a reminder that advocacy isn't always planned. Sometimes it begins with simply refusing to give up on someone you love.

Read how one family's experience reflects the reality faced by countless others, why persistence became their greatest tool and how one daughter's commitment continues to inspire change for patients everywhere: https://hubs.ly/Q04pYgzH0