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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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News & Updates:
News & Insights
Episode 40: Fighting Pancreatic Cancer
On this episode of the podcast, Terry and Bob discuss the advancements in pancreatic cancer treatment. This topic is especially timely. Not only is it Pancreatic Cancer Awareness Month but also Alex Trebek, the longtime host of Jeopardy, recently died from this...
Episode 39: How Precision Medicine Can Help You
On this week’s episode of the podcast, Terry and Bob discuss the advances in cancer treatment as a result of personalized and precision medicine. Unfortunately, these advances have been obviated by the Covid-19 pandemic, which has led countless patients to avoid...
Episode 38: Patient Victory for Price Transparency
On this episode of the podcast, Terry and Bob discuss the recent rules from Health and Humans Services to demand healthcare price transparency from both providers and insurers. As patients know all too well, finding out how much healthcare costs is usually...
For Those Struggling With Medical Debt, These Policy Solutions Can Help
Medical debt is not a new problem in the U.S. It has, however, received greater attention in recent years especially following implementation of the Affordable Care Act (ACA)—the premise of the ACA is to provide coverage to as many individuals as possible to spread...
Episode 37: How PBMs Profit at Your Expense
On this episode of the podcast, Terry and Bob discuss how pharmacy benefit managers (PBMs), middlemen between drug manufacturers and insurers, profit at patients' expense. PBMs collect hundreds of billions of dollars worth of rebates each year from drug companies but...
Episode 36: Your Access to Gene Therapies
On this episode of the podcast, Terry and Bob discuss gene therapies, which have the potential to cure and treat many genetic disorders by delivering nucleic acids into patients’ cells and replacing genes. Gene therapies can be lifesaving for many patients, but...
Share your story
Help us get your voice heard. Your personal story is a powerful call to action.
What to share
Tell us whether your insurance company is not responding to your needs, the health care maze is bringing you down, or share your success in solving a patient problem.
Why Stories Matter
We use patient stories to bring attention to patient access issues at the federal level and in state houses around the country. We’ll let policy makers and elected officials know patients are rising now.
Be personal this is your story, focus on your experience, what has impacted you.
Be specific the most powerful stories include real-world examples.
Be concise try to communicate your story clearly so everyone can understand.
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
“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.”
“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.”
“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.”