You Can Be an Advocate

There are many ways you can advocate for patients rights, access to care and affordabilty.  Sign up and we’ll work with you to find your niche.

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The most powerful way to spread understanding and compassion is to tell your story to others. Stories can encourage giving and motivate legislators, but they also bind our community together. 

We’re telling real patient stories about healthcare in America. 

Healthcare should be about a patient working with their care provider to find the right treatment. Period. 

Of course, that’s not how it really works. There are insurance barriers to access and affordability. Expensive markups by secretive pharmacy benefit managers. And callous value frameworks that value everything but the patient.

The answer: Your Patient Story

BRINGING THE PATIENT VOICE TO EVERY CONVERSATION ABOUT HEALTHCARE 

We believe that the true measure of value in our health care system starts with the concerns and goals of patients. Not payers. Not providers. Not manufacturers. But you, the patient.

Every day, patients living with rare diseases and chronic conditions face real barriers to accessing the right treatment. 

  • A retired grandmother who loses access to her arthritis treatment because of a midyear bait-and-switch by her insurance company.
  • A working mom who must live with migraine pain because of step therapy requirements by her pharmacy benefit manager. 
  • A toddler who must overcome a flawed value framework before accessing a life-saving treatment. 

Treatment decisions should be left to patients working with their care providers. 

By sharing the patient’s perspective on access, value and treatments, we can overcome the barriers that prevent patients from accessing the right treatment – right away. 

Patients Rising Stories

women talking at table

Actions you can Take

Review our state and federal actions below – help make a difference.

Our Patient Advocacy platform provides a full suite of advocacy initiatives. It focuses on cultivating and activating a diverse grassroots network of patients, families and allies to advocate for positive change in our complex healthcare system. 

We work at community, state and federal levels supporting reforms and legislation aimed at advancing patient access to affordable, quality healthcare. 

For state-by-state resources and actions, visit our State Pages.

Support the Safe Step Act

Support the Safe Step Act

Please email your representatives to show your support of S. 464, the Safe Step Act, a bipartisan bill that seeks to reform an insurance practice known as step therapy. People with chronic illnesses often experience step therapy in their care journey. Step therapy,...

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Support Johanna’s Law

Support Johanna’s Law

Also known as The Gynecologic Cancer Education and Awareness Act, the legislation supports a variety of programs, research projects and activities at Centers for Disease Control and Prevention (CDC) aimed at educating healthcare providers and the general population...

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Support the Supplemental Security Income Restoration Act

Support the Supplemental Security Income Restoration Act

Currently over 8 million Disabled Americans rely on SSI (supplemental security income) in order to survive. Disabled people use SSI for essentials like food, clothes and medical treatment. Currently SSI rules require you to not maintain more than $2,000 in total...

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Advocacy Master Class

At Patients Rising we believe that patients and caregivers hold the power to move the needle in healthcare and create a better tomorrow for all patients and caregivers by raising their voice! That is why we are thrilled to announce the launch of our Advocacy Master Class designed to train patients, caregivers, and citizens in the art of healthcare advocacy.

More Actions

Guide to Commenting on ICER’s Draft Evidence Report on Treatments for Hypertorphic Cardiomyopathy

On August 18, 2021, ICER released its draft evidence report, “Mavacamten for Hypertrophic Cardiomyopathy: Effectiveness and Value.” This guide provides a framework for considering what aspects of the new hypertrophic cardiomyopathy treatment are important to patients and their families, and how to consider presenting those perspectives. 

Drug Utilization Review Board Advocacy Toolkit

DUR Boards and P&T Committees determine how each drug must be covered by Medicaid in that state. This often means putting criteria in place to limit or even restrict coverage. Some examples of those limits include age requirements, step therapy requirements, or even invasive tests for the patient. These limits can have the practical effect of blocking patient access to a drug.