Season 2 | Episode 15 – My Life is Worth It!

On this episode of the podcast, Terry and Bob discuss the recent recommendations by the Medicaid and CHIP Payment and Access Commission (MACPAC) that threaten patient access to medications that have received the FDA's accelerated approval designation. These...

Season 2 | Episode 14: Why Your Care Costs So Much

On this episode of the podcast, Terry and Bob discuss the numerous cost-drivers that inflate the price of American healthcare. They highlight how electronic health records requirements divert doctors’ attention away from patients to unproductive bureaucratic...

Season 2 | Episode 13: Making Lupus Treatments Accessible

On this episode of the podcast, Terry and Bob discuss the latest developments in access to treatments for lupus patients. They highlight how ICER's recent review of lupus treatments threatens access for patients because it inherently underestimates the value of these...

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for yourself – for others

Help us advocate for the rights of patients with chronic and life-threatening illnesses. Work with us at community, state and federal levels in support of reforms and legislation aimed at advancing patient access to and affordability of healthcare.

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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.

We Created a Toolkit You Can Use

Visit our toolkit to learn more about the issues, learn how you can get involved, develop your own statement, and use the letter templates to write to your represenatives.

Share your story

Help us get your voice heard. Your personal story is a powerful call to action.

Patients are speaking out and sharing their stories at the national and state level to affect change. Policy changes start happening when patients band together district by district, city by city, and state by state to rise up and make their voices heard. Whether it is a city council in Philadelphia, a state legislature in Massachusetts, or the President of the United States — your voice matters.

Why Stories Matter

We use patient stories to bring attention to patient access issues at the federal level and in statehouses around the country. We’ll let policymakers and elected officials know patients are rising now.

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.

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