Put Patients First

Patients Rising: Our Fight for Patient-Centered Healthcare

Patients Rising is a patient advocacy organization fighting to ensure every patient has access to the healthcare they need — when they need it. 

We believe that the true measure of value in healthcare starts with the patient's needs, not the interests of payers, providers, or manufacturers. We're dedicated to breaking down systemic barriers and putting the patient experience at the forefront of policy reform. Our work is built on core principles for healthcare:  Access, Affordability, Transparency, Accountability, and Patient Control.

Access: Breaking Down Barriers to Care

Every patient deserves access to the right treatment at the right time, free from barriers created by corporate middlemen. We're fighting against anti-patient algorithms, restrictive formularies, and "value frameworks" that threaten the pipeline of progress. Our advocacy focuses on policies that deliver access to innovative therapies, including accelerated FDA approvals, expanded early access programs, and telehealth.

“Patients need and deserve ready access to medicines that are right for them... But this premise is under direct assault, and patients everywhere are facing new and unprecedented barriers to access to therapies that are critical to their care.”

Affordability: Real Solutions for Rising Costs

We believe healthcare costs shouldn't be a barrier to life-saving care. We advocate for real solutions that reduce patients' out-of-pocket costs, such as expanded Health Savings Account flexibility and direct cost-sharing assistance. We categorically oppose government price controls, Prescription Drug Affordability Boards (known as PDABs), and other policies that ration care and limit a patient's access to the right treatment. We also support policies that increase domestic manufacturing and innovation, because breakthroughs improve quality of life and ultimately reduce the overall cost of healthcare.

“Affordable Healthcare. This can be achieved by addressing: Coinsurance...Copays...Premiums...List prices...Sharing in the rebates...Ending Surprise Billing…”

Transparency & Accountability: Putting Patients First 

We're committed to making healthcare institutions more transparent and accountable to patients. We advocate for greater transparency in 340B program spending, demanding a clear definition of charity care to ensure non-profit hospitals truly serve their communities. We also demand real accountability for pharmacy benefit managers (PBMs) who manipulate drug pricing with hidden rebates. Patients have a right to be fully informed by hospitals, PBMs, and insurance companies about the real out-of-pocket cost of their care.

“The PBMs and insurers are harming the health of patients with chronic and rare diseases by limiting access and charging them retail for drugs they buy at deep discounts.”

Control: Restoring the Doctor-Patient Relationship

The ultimate decision about a patient's treatment should be between them and their doctor. We oppose discriminatory measures like Quality-Adjusted Life Years (QALYs) and affordability boards that devalue human live. We believe that only patients can decide the goals, priorities, and value of their treatment. Our mission is to empower patients to seek and receive the care they need, when they need it, free from bureaucratic interference.

“It won’t matter what your doctors says or whether there’s a drug that could help you—if the formula says it’s too expensive, you’re done.”

Our Policy in Action: Key Issues 

Patients Rising is advocating for critical policy reform. We've created dedicated resources to help you understand each issue and make your voice heard.

340B Transparency & Patients' Right to Know

Our "Patients' Right to Know" campaign is fighting for state legislation to enhance transparency in the 340B program, holding non-profit hospitals accountable for how they use drug discounts. We believe 340B savings should go to patients. 

PBM Accountability

We demand real transparency from Pharmacy Benefit Managers (PBMs) who manipulate drug pricing with hidden rebates and create barriers to access through restrictive formularies. We advocate for policies that ensure rebates and savings are passed directly to patients, lowering their out-of-pocket costs.

Stopping PDABs

We're actively opposing Prescription Drug Affordability Boards (PDABs) at the state level that impose price controls, which ultimately restrict patient access to life-saving medications and devalue human lives.

Expanded HSA Access & More Ways to Use Your Money 

To address the problem of rising out-of-pocket costs, we support policies that expand the flexibility of Health Savings Accounts (HSAs) and provide direct cost-sharing assistance to patients.

Accelerated Approvals & Right to Try

Patients shouldn't have to wait a decade for a new treatment. We fight for accelerated FDA approvals and expanded early access programs, so that access is never limited by red tape.

Affordability: Lowering Real Out-of-Pocket Costs

We are focused on policies that lower the costs patients actually pay, not just the "list price" games played by PBMs and payers. We successfully fought copay accumulator programs to ensure that copay assistance helps patients, not insurers.

Ban the QALY

We are leading the charge against the use of discriminatory measures like the Quality-Adjusted Life Year (QALY). This flawed metric devalues the lives of the sickest among us and is used to justify limiting access to care.

Patients Rising is building a powerful national movement of patient advocates. We are collecting personal stories across every congressional district—connecting real lives to real legislation.

Get Involved: Want to make a difference? 

Our work is powered by the voices of patients just like you.

Empowered patients - armed with the right information - can cut through the political noise.