Patients Rising

Patients Rising was formed to provide the support, training, and tools #patients and caregivers need to access the treatment they deserve.

[Patients Rising @patientsrising]

Illinois 340B hospitals now generate roughly 2.7 times more in program profits than they spend on charity care. Statewide, these hospitals provide charity care equal to just 1.74% of their costs — below the national average — and nearly 69% provide less charity care than comparable non-340B hospitals. One Illinois hospital alone, the University of Chicago Medical Center, is estimated to generate more than $200 million annually through the program.

Where is that money going?

Kathy Missel is asking the questions that patients deserve to have the answers to. In case you missed it earlier this week, take a look at her guest column for Patients Rising: https://t.co/xSi7Dl9nln

[Patients Rising @patientsrising]

Wisconsin presents the most concentrated medical-bankruptcy pattern in our six-state series. Across 104 individual Chapter 7 and Chapter 13 filings from the Eastern and Western Districts of Wisconsin in January and February 2024 — just two months — the data shows the highest 340B exposure rate, the highest medical-debt rate, the densest verified-340B dollar accumulation per unit of time, and the most concentrated single-system dominance of any state we have examined.

Read our report here: https://t.co/XR91kgf3bt

[Patients Rising @patientsrising]

Healthcare debates are often fought at 30,000 feet. Patients live them on the ground.

From the industry's perspective, there are contracts, formularies, utilization management programs and cost controls. From the patient's perspective, there is a prescription that was approved yesterday and denied today. There is a treatment delayed. There is another form to complete while symptoms continue.

The healthcare system is full of competing priorities. Patients only have one.

PCMA is coming to the table. Patients Rising is here to listen, and we're bringing the patient perspective into the room.

Sign up here and be part of the conversation: https://t.co/8QDAHHxIm0

[Patients Rising @patientsrising]

PBMs have become one of the most debated parts of the healthcare system.

Supporters point to their role in negotiating costs and managing prescription drug benefits. Patients often point to experiences with prior authorizations, step therapy, formulary changes and coverage decisions that can create barriers to care.

On June 4, Patients Rising and PCMA are coming together for a conversation about where those perspectives meet.

What do PBMs actually do? What changes are being discussed? What concerns are patients raising, and how should the industry respond?

Join Terry Wilcox and senior leaders from PCMA for a live virtual town hall. Half of the program will be devoted to questions from patients, caregivers and advocates.

We'd love to have you join us! Register here: https://t.co/SBQq7tAkk2

[Patients Rising @patientsrising]

Most people assume medical bankruptcy happens because someone didn't have insurance.

What if that's not the whole story?

Patients Rising reviewed 146 bankruptcy filings from Washington state and found more than $1 million in verified medical debt owed to hospitals participating in the federal 340B program. The largest share of that debt was concentrated within a single nonprofit hospital system.

In fact, 81% of the bankruptcy cases reviewed included medical debt, and more than one-third included verified debt owed to a 340B-participating hospital.

Read more here: https://t.co/NNdLfNoG1y

[Patients Rising @patientsrising]

"It's a bad day, not a bad life."

It's the mantra that you can see on Kimberly Gonzalez's social media profiles as she passionately tells her story and advocates for the rare disease community.

Living with scleroderma, Raynaud’s, and antiphospholipid syndrome, Kim knows firsthand the challenges patients face navigating complex care. But what stands out even more than her diagnosis is her determination to turn adversity into action.

Patients Rising is proud to have Kim as part of the Patients Rising Patient Senate.

Learn more about our Patient Senators here: https://t.co/sfkNeUhSrX

[Patients Rising @patientsrising]

Kathy Missel is raising questions about whether the billions generated through the 340B program are truly reaching the vulnerable patients the program was originally designed to help. In her guest column, she examines how some Illinois hospitals now generate far more in 340B profits than they spend on charity care, while patients continue facing high medical bills and barriers to care.

As lawmakers consider expanding protections for the program, she talks about the growing debate around transparency, accountability and whether the financial benefits of 340B are making a measurable difference for the people it was created to serve.

Read her story here: https://t.co/uzF4f4JuAN

[Patients Rising @patientsrising]

For years, PBMs have operated largely out of view of the patients whose lives their decisions shape. Denials. Prior authorizations. Step therapy. Formulary changes. Lost records. For the sickest patients, the consequences have been serious — and in some cases, devastating.

On June 4, PCMA is sitting down with Patients Rising. About what PBMs actually do. About what's changing. About what accountability needs to look like from here.

Patients have questions. This is where we ask them.

Join host Terry Wilcox for a 60-minute virtual town hall with senior leaders from the Pharmaceutical Care Management Association. Half the hour is audience Q&A.

Sign up here: https://t.co/wSxqt5zlis

[Patients Rising @patientsrising]

Michelle knows what it means to fight for care that should never have been difficult to access in the first place.

After her daughter Leslie was diagnosed with Prader-Willi syndrome nearly 28 years ago, Michelle found herself battling insurance companies for therapies, medications and support services that directly impact quality of life.

Instead of stepping back, she stepped further into advocacy.

Michelle went on to serve as a board member and Board Chair of PWSA/USA, later expanding her work into government-level advocacy because she believes real change happens when lawmakers hear directly from patients and caregivers living these issues every day.

As part of the Patients Rising Patient Senate, Michelle brings a perspective shaped by decades of experience navigating Medicaid, insurance barriers and the long-term realities families face when care systems fail to communicate across state lines. She is passionate about improving Medicaid portability for adults with disabilities, reforming the role of PBMs and ensuring patient voices are part of policy conversations from the beginning, not as an afterthought.

We appreciate your advocacy, Michelle!

[Patients Rising @patientsrising]

A study published from last year from the National Consumers League released results of a poll taken from 20,000 adults with an overwhelming concern about the burden of medical debt and strong public demand for comprehensive reforms of the 340B Drug Pricing program.

Nearly four in five surveyed adults (78%) support establishing requirements to ensure that qualifying patients directly benefit from 340B drug discounts through reduced out-of-pocket prescription drug costs. More than three in four surveyed adults (77%) believe hospitals should be required to pass 340B savings directly onto patients.

[Patients Rising @patientsrising]

Who's really benefitting from 340B in Illinois?

Illinois 340B hospitals now earn roughly 2.7 times more in program profits than they spend on charity care. Statewide, these hospitals provide charity care at just 1.74% of their costs — below the national average. Nearly 69% of Illinois 340B hospitals fall short on charity care benchmarks compared to hospitals not participating in the program at all.

Read more here: https://t.co/XZsdFJxXCM

[Patients Rising @patientsrising]

This week Governor Abigail Spanberger for vetoed HB483 and SB271, legislation that would have established a Prescription Drug Affordability Advisory Panel (PDAAP) in Virginia.

We applaud her decision for putting Virginia patients first! Thank you, Gov. Spanberger!

Read more here: https://t.co/hZcUdyKZNi

[Patients Rising @patientsrising]

Nonprofit hospitals participating in the 340B program devote an average of just 2.3% of their expenses to charity care, despite receiving significant drug discounts through a program originally intended to support vulnerable patients.

At the same time, investigations and reporting have raised growing questions about whether some hospital systems are using 340B revenue to strengthen their own margins and expansion efforts rather than reducing costs for the patients the program was designed to help.

[Patients Rising @patientsrising]

Friendly reminder — You can join us TONIGHT for our Town Hall that will explore the complexities of how 340B works and why patients don’t benefit!

We get started at 7:30 PM EST in our Circle community. Sign up here: https://t.co/5rmHLKsWFH

[Patients Rising @patientsrising]

For Bridget Dandaraw-Seritt, advocacy has never existed inside conference rooms alone. It has lived in hospital visits, community gatherings, policy meetings and the everyday reality of helping medically complex families feel less alone in a healthcare system that often leaves them navigating impossible situations by themselves.

As the founder of Advocates for Compassionate Therapy Now (ACTnow) and the Colorado Rare Disease Coalition, Bridget has spent years building support systems for patients living with chronic and rare diseases. Through educational programs, community events and policy work spanning issues from disability access to 340B and pharmacy benefit manager reform, her work has focused on making sure patients are not treated as an afterthought in the decisions shaping their care.

A Patients Rising Patient Senator, Bridget brings both lived experience and policy insight to conversations surrounding healthcare access, rare disease advocacy and the realities facing medically complex families every day.

[Patients Rising @patientsrising]

Healthcare has become increasingly shaped by programs and financial structures most patients never hear about until a prescription cost changes, a hospital bill becomes difficult to understand or access to care suddenly feels harder to navigate than expected.

The 340B program now sits at the center of a growing national conversation involving hospitals, pharmacies, patient access and transparency, yet many people affected by it still have little understanding of how it functions or where its impact is actually felt.

Join us for a virtual Town Hall exploring how 340B works, why it has drawn increasing scrutiny and what accountability could look like from a patient perspective.

Tuesday, May 19
7:30-8:30 PM EST
in our Circle community

Join us here: https://t.co/CiTNrvDL34

[Patients Rising @patientsrising]

We want you to be educated and empowered in conversations regarding prescription drug affordability. Join us at 1 p.m. on Wednesday, May 27 for a conversation about advocating for solutions that will directly benefit you!

Join us here: https://t.co/yKeGJasLph

[Patients Rising @patientsrising]

$81.4 billion spent on 340B drugs. $66.4 billion in rebates flowing back to hospitals. $0 in savings reaching patients.

Where did the money go?

Join us for a Town Hall unpacking the 340B drug-discount program — designed to lower costs for vulnerable patients, but increasingly a hospital profit center while patients still pay full price at the pharmacy counter.

We'll break down what 340B actually is, how the money flows, why patients aren't seeing the savings, and what real accountability would look like.

Bring your questions. Bring your hospital billing stories. This is your program, and your voice belongs in this conversation.

Patient questions. No spin.

Education. Community. Advocacy.

This Town Hall will take place in our Circle community, click here to sign up: https://t.co/E3xH8v68tN

[Patients Rising @patientsrising]

Healthcare policy conversations often focus on systems, regulations and research. People like Tom Norris make sure they stay connected to the reality of living inside those systems every single day.

Tom is a retired U.S. Air Force Lieutenant Colonel and national patient advocate who has lived with chronic pain for more than 35 years following cancer treatment. His work now centers on improving pain care, strengthening patient engagement in research and pushing healthcare toward decisions that actually reflect the experiences of the people navigating it.

Through chronic pain support groups, research collaborations and advisory roles with programs including PCORI and NIH HEAL, Tom helps bridge the gap between researchers, clinicians and patients living with complex medical conditions.

That perspective matters, especially in rooms where policy and healthcare decisions are being shaped.

We’re grateful to have Tom as part of the Patients Rising Patient Senate.

[Patients Rising @patientsrising]

“When my daughter, Luella, was born, she had low muscle tone and was diagnosed with failure to thrive,” said Kayla. “Even then, the signs were there. ... She required a feeding tube to survive.”

Luella would eventually be diagnosed with Prader-Willi Syndrome, a rare genetic disorder that affects metabolism, hunger regulation, growth and development. Today, Kayla is turning that experience into advocacy by pushing for earlier diagnosis, stronger awareness and expanded newborn screening efforts that could change the trajectory for other families.

Read more: https://t.co/agxBkgmbcN