Patients Rising

Alzheimer’s can begin dismantling the infrastructure of a family before anyone realizes how much has changed.

Jenn Fink talked about discovering missed mortgage payments and unpaid bills because those responsibilities had always belonged to her husband, Chad. As his Alzheimer’s progressed, Jenn found herself absorbing pieces of their life that had always belonged to him, while also coming to terms with why they were suddenly being missed.

That is the insidious reach of this disease. It enters the ordinary responsibilities of a marriage, alters the roles people have occupied for years and gradually changes what one person must carry for the other. Jenn and Chad gave us an intimate look at what that progression demands from a family, and why preserving Chad’s independence and cognitive function means so much to both of them.

Our second panel is underway at the State of the Patient Summit, and the conversation is moving beyond what is scientifically possible in Alzheimer’s care to what patients and families can realistically access.

Dr. Travis Wilkes, Jim Taylor, Deanna Darlington and Christopher Durrance are examining the convergence of earlier detection, emerging treatments and the policies that determine whether patients can benefit from either.

Because a medical breakthrough has limited consequence if patients are diagnosed too late to benefit from it or encounter barriers that place treatment beyond their reach.

And Alzheimer’s care cannot be measured by the patient alone. Every diagnosis reverberates through a family, often transforming spouses, children and loved ones into caregivers while fundamentally altering their own lives.

Progress requires more than innovation. It requires an infrastructure capable of delivering that innovation to the people it was designed to help.

Jenn and Chad Fink are on stage sharing a story that illustrates the full consequence of Younger-Onset Alzheimer’s, long before most families ever imagine they will have to confront it.

Chad had built a successful career in sales and leadership when the familiar began becoming unfamiliar. Meetings became difficult to follow. Words became harder to retrieve. Tasks that once required little thought demanded increasing effort. Eventually, the disease forced him away from the career and independence he had spent decades building.

For Jenn, the progression of Chad’s disease fundamentally altered the trajectory of her life, too. She left her career as an elementary school teacher to become his caregiver and driver.

Their story underscores something that can get lost when Alzheimer’s is discussed through the lens of diagnosis and treatment alone: the disease can dismantle the architecture of an entire family’s life.

Careers change. Roles shift. Independence recedes. Plans are rewritten.

Jenn and Chad are sharing their experience today to give greater visibility to Younger-Onset Alzheimer’s and to reinforce what is at stake when we talk about earlier detection, treatment access and meaningful support for caregivers.

We’re sitting down with Terry Wilcox for a reflective conversation about her stepmother, Sandy, and the profound impact Alzheimer’s disease has on the person diagnosed and everyone who loves them.
Terry is reflecting on her family’s decades-long journey with the disease, the realities of caregiving and what it means to watch someone you love gradually lose pieces of the life they built.

Her family’s experience also brings us to where we are today: a new era of Alzheimer’s care, with advances in earlier detection and treatment creating possibilities families like Terry’s did not have.

This conversation is about Sandy, the family who cared for her and what their experience can teach us about what patients and caregivers need now.

The State of the Patient Summit has kicked off at the U.S. Capitol, and we’re getting right into it.

Thomas Johnson, Dr. Anthony DiGiorgio and Ryan Long are on stage talking about transparency, accountability and what patients should be able to expect from a program designed to serve vulnerable and underserved communities.

The conversation is focused on where these savings go and how they show up for patients through charity care, lower costs, medication access, transportation and other support services.

When billions of dollars move through a program built around patients, patients deserve to know how they’re benefiting from it.

Nearly $100 billion sounds like a pretty convincing number. Until you ask what’s inside it.

The American Hospital Association says tax-exempt 340B hospitals provided nearly $100 billion in benefits to their communities. That figure comes from hospital-reported IRS data and includes a broad range of categories, from financial assistance and unreimbursed Medicaid costs to research, education and other community programs.

So the question is not simply how large the number is. It’s what qualifies as a community benefit, how consistently hospitals report it and how much patients can actually see for themselves.

At the State of the Patient Summit, The Invisible Patient: Transparency and Accountability in 340B will dig into the claims, the data and what meaningful transparency should require as Congress considers 340B reform.

Join us TOMORROW and come ready for a 340B conversation that gets past the headline numbers.

Register here: https://hubs.ly/Q04wDc4t0

Nine people were told that the thing they wanted to change was simply how healthcare works. None of them believed it. Two days before the 2026 State of the Patient Summit, Terry Wilcox tells the stories behind this year's Rise Award honorees, in the words of the people who know them best.

Check out the newest episode of the State of the Patient Podcast here: https://hubs.ly/Q04y59WB0

And if you'd like to join us at the Capitol this week, register for the State of the Patient Summit here: https://hubs.ly/Q04y59Zf0

One state. 146 bankruptcy filings. More than $1 million owed to 340B hospitals.

When Patients Rising examined bankruptcy records from Washington, 81% of the cases included medical debt. In 51 households, a 340B-participating hospital appeared as a creditor, with verified balances totaling more than $1.04 million, the largest total in our six-state review.

More than one-third of that debt was concentrated within a single hospital system: Providence and its Swedish and Kadlec affiliates. One household owed Kadlec roughly $179,000. Another family earning just $24,000 a year owed two 340B hospitals a combined $53,000.

These bankruptcy records give us a view of 340B that program-level numbers cannot: the patient-side ledger.

Read more: https://hubs.ly/Q04wDvfz0

And this week, we’re bringing it to Capitol Hill.

At the State of the Patient Summit, The Invisible Patient: Transparency and Accountability in 340B will take on the questions these cases leave behind, including what patients should know about 340B, how hospital savings are used and what greater accountability should require.

Join us September 24 in Washington, D.C., as we bring the patient-side ledger into the 340B reform debate.

There's still time to register: https://hubs.ly/Q04wDGtQ0

What 146 Washington Bankruptcy Filings Reveal | 340B Hospital Debt Providence Health appears on 41 of 47 verified 340B creditor lines in our Washington bankruptcy review. 146 filings, $1 million in hospital debt.

Washington, D.C., we’re coming to Capitol Hill this week!

On September 24, the Kennedy Caucus Room becomes the stage for the State of the Patient Summit + Rise Awards, an afternoon of big conversations, bold perspectives and the people pushing healthcare forward.

We’re bringing together patients who have lived the policies being debated, caregivers who know what happens after the appointment ends, clinicians working inside the system and policy leaders with the power to change it.

We’ll take on 340B reform and accountability, dig into Alzheimer’s treatment access, earlier detection and caregiver support, then recognize some of the advocates, innovators and truth-tellers changing what patients can expect from healthcare at the 2026 Rise Awards.

And we’re doing it in one of the most historic rooms in the United States Senate, steps from where healthcare policy is written.

This is the week. Join Patients Rising on Capitol Hill September 24 for the State of the Patient Summit + Rise Awards. We want you in the room.

There's still time to register here: https://hubs.ly/Q04wDJc70

A household earning about $17,000 a year ended up owing one hospital $180,000.

In 2024, a married couple in Racine, Wisconsin filed for Chapter 7 bankruptcy with $223,779 in total liabilities. Medical bills accounted for 97.1% of their unsecured debt, including $180,000 owed to Froedtert Health and another $16,098 owed to Tomah Memorial Hospital.

Both hospitals participate in 340B.

Even if the household had put every dollar of its roughly $391 monthly margin toward the Froedtert balance, paying it off would have taken about 38 years. With the second hospital bill included, it would have taken more than 40.

Wisconsin also stood out in our broader review: a 340B-participating nonprofit hospital appeared as a creditor in 65% of the consumer bankruptcy filings we examined in the state.

Read more: https://hubs.ly/Q04wGBzM0

These records cannot tell us how much 340B assistance, if any, reached these patients before their bills ended up in bankruptcy court. That missing information is part of the transparency conversation happening now as Congress considers changes to the program.

On September 24, we’re bringing that conversation to the State of the Patient Summit during The Invisible Patient: Transparency and Accountability in 340B.
Join us on Capitol Hill as we put cases like this in front of the larger 340B debate and ask what patients should be able to see about the benefits generated in their name.

Register here: https://hubs.ly/Q04wGN850

$180,000 Medical Debt in Wisconsin Bankruptcy | Froedtert Case A Wisconsin bankruptcy case shows $180,000 owed to Froedtert, the state's highest-priced hospital system — from a household earning about $17,000 a year.