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Latest Updates
Can Mark Cuban Deliver Cheaper RX? – Season 3 | Episode 20
On this episode of the podcast, Terry and Bob discuss a new effort by entrepreneur Mark Cuban to deliver less expensive medications to patients. They also explain the ongoing baby formula shortage plaguing the country and point out how the industry's consolidation...
What is the Future of Co-pay Accumulator and Maximizer Programs?
Surabhi Dangi-Garimella, PhD Co-pay accumulator and maximizer programs run by commercial health plans and pharmacy benefit managers (PBMs) have been designed to counter co-pay assistance programs floated by drug manufacturers. They prevent the co-pay assistance from...
Have Health Plans Abandoned Rare Disease Patients?: Season 3 | Episode 19
On this episode of the podcast, Terry and Bob discuss health access challenges facing patients with rare diseases on employer health plans. They point out new data on drug rebates showing no relationship between the size of rebates and drug price savings. And they...
Take Action
Urge the FTC to study the perverse practices of Pharmacy Benefit Managers (PBMs)
On February 24, the Federal Trade Commission (FTC) issued a solicitation for comment regarding Pharmacy Benefit Managers (PBMs) and the impact PBMs have on patients, among others. You can see the official notice here. Here’s what you need to know: A...
Lend your voice to support the Help Ensure Lower Patient (HELP) Copays Act
Millions of vulnerable Americans across the country rely on cost-sharing assistance to afford the medicines they need. Patients in the private health insurance market have increasingly relied on this assistance due to rising out-of-pocket costs for drugs....
Ensure Patient Perspectives Are Included in FDA Benefit-Risk Assessments
Lend your voice to support the Better Empowerment Now to Enhance Framework and Improve Treatments (BENEFIT) Act. Congress and the Food and Drug Administration (FDA) have made considerable progress in driving forward policies and procedures to ensure the patient...
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.”
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.”
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.”