Guide for Commenting on ICER’s Draft Evidence Report on Treatments for Amyotrophic Lateral Sclerosis (ALS)

On June 14, 2022, ICER released its draft evidence report, “AMX0035 and Oral Edaravone for Amyotrophic Lateral Sclerosis.” This document provides a framework for considering which aspects of two potential treatments for Amyotrophic Lateral Sclerosis (ALS) are...

Patients on Capitol Hill: Season 3 | Episode 24

Recently, patients from the chronic disease community from across the country convened in Washington D.C. for the We the Patients Fly-In. They met with members of Congress and their staffs to advocate for several pro-patient healthcare bills that would improve access,...

The Future of Pharmacies: Season 3 | Episode 23: 

On this episode of the podcast, Terry and Bob explain how patients can get relief from high prescription drug costs through independent pharmacies that cut out pharmacy benefit manager middlemen and insurers. They also point out AARP's conflict of interest. The...

We The patients

Washington, D.C. Fly-in 2022
June 14 & 15, 2022

Patient advocates from across the United States will travel to Washington, D.C. to be a part of the legislative process and rise up for the rights of patients with chronic and life-threatening illnesses. Attendees will develop a better understanding of federal policy and meet with key decision makers to help shape and inform health care policy. 

The Capitol Building in Washington, DC

#WeThePatients

Latest Updates

Patients on Capitol Hill: Season 3 | Episode 24

Patients on Capitol Hill: Season 3 | Episode 24

Recently, patients from the chronic disease community from across the country convened in Washington D.C. for the We the Patients Fly-In. They met with members of Congress and their staffs to advocate for several pro-patient healthcare bills that would improve access,...

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Take Action 

Support the Safe Step Act

Support the Safe Step Act

Lend your voice to support the The Safe Step Act of 2021 - S. 464/H.R. 2163 The Safe Step Act of 2021 The Safe Step Act amends the Employee Retirement Income Security Act (ERISA) to require a group health plan to provide an exception process for any medication step...

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Position Statements

Patients Rising Now is committed to engaging in policy discussions that impact the access and affordability of care for patients. We carefully review many issues, weigh opinions from experts, talk with patients, then create these position statements.

We hope these statements can help you understand our mission better and contribute meaningfully to your own position on these issues.

Terry Wilcox speaking

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.”

Carolanne Monteleone

Gastroparesis Patient, Pennsylvania

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.”

Hannah Page

Borderline Personality Disorder, New York, NY

As a patient, additional health care costs will be limited by my health insurance company.

“Insurance should protect me from catastrophic costs as that’s the purpose of insurance. My costs should be a reflection of my care, not the cost of a company doing business. I will not be charged unreasonable or unexpected out-of-pocket costs for services after I have paid my premiums. Why should patients like me pay coinsurance based off the list price and not the negotiated rebate price? My insurance company should work to minimize my out of pocket costs and concentrate on providing care to me and my family.”

Bob Tufts

Multiple Myeloma, New York, NY