New Webinar
Elevating Patient Voices in Ultra Rare Disease: Navigating ICER Reviews
Join Us on November 28, 2013 at 1 PM ET
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We The Patients
Learn about We The Patients Week in DC.
State-by-State Actions & Resources
Learn about specific actions you can take to impact policy decisions and find critical advocacy resources.
Patient Stories
We want to hear what you’ve experienced as a patient. Take a few moments to share your experience and motivations to advocate for patients.
When our elected officials hear from patients, they listen and take action.
Advocacy Masterclass 2023 Applications are Open
The Advocacy Masterclass, part of our Patient Learning Center, is designed to train patients, caregivers, and citizens in the art of healthcare advocacy.
Latest Updates
National Patient Group: White House’s War on Patients Harms Sick Americans
WASHINGTON — Patients Rising Now Executive Director MacKay Jimeson today released the following statement regarding the White House announcement of a blueprint to March In on medical treatment patents: “The one aspect of America’s healthcare system that works well is...
Letter to Senate Leadership Supporting PBM Reform from Employers & Other Stakeholders
Patients Rising, along with 50 other patient groups, sent a letter to Senate Leadership urging support for the health care provided through private employers to 179 million Americans by enacting strong pharmacy benefit manager (PBM) reforms this year. It is imperative...
Patients Rising Now Statement: ICER’s ‘Updates’ are Thinly Veiled Strategy to Continue Discriminatory Tactics
“Let’s be clear, today’s ‘updated’ ICER Value Assessment Framework should be left in the dark ages.
From Our Patient Advocates
As a patient, I expect to be able to access the health care services I need.
“Medicare refuses to cover my tube feeds. Since my doctor is unable to show proof that I will need my feeding tube forever, they don’t deem it as necessary. Reality is, without my feeding tube I wouldn’t be here today. I need it to survive. The rules and regulations are a one-size-fits-all model for humans who are complex and unique.”
As a patient, health care decisions will remain between me and my doctor.
“It is essential to find a doctor or team who not only listens to and believes you but also respects you, it’s all too easy to get overlooked, ending up with your insurance company dictating your care. I owe my parents everything for taking me to a psychiatrist when I was six or seven and unable to function due to my intrusive thoughts and obsessive tendencies. I can’t imagine how much more painful my childhood might have been otherwise. Access to the right kind of medical care can be not only the difference between life and death, it can also be the difference between misery and a life worth living.”