S2 | E48: Build Back Better + Chronic Illness

On this episode of the podcast, Terry and Bob discuss Congress' consideration of the Build Back Better bill and the provisions that impact patients with rare and chronic diseases. They break down the legislative process ahead and highlight how the Senate...

S2 | E47: How to Design Better Health Insurance

On this special holiday edition of the podcast, Terry discusses opportunities to improve employer health insurance, which provides most Americans with their health coverage. She discusses its rapidly increasing cost and access barriers -- especially for those with...

S2 | E46: Antibiotics: What You Need to Know

On this episode of the podcast, Terry and Bob discuss the ongoing threat of antibiotic resistance. Overuse of antibiotics means new, threatening strains of infections that are resistant to antibiotics. Antibiotics are a common go-to solution for illnesses, but there's...

Get Involved

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.

There are many ways for you to get involved.  Choose what you are comfortable with, and go from there.

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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.

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