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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 35: Vaccine Misinformation
On this episode of the podcast, Terry and Bob discuss the triumph of the forthcoming Covid-19 vaccines, which are on the cusp of development just nine months after the Covid-19 disease was sequenced. Unfortunately, they point out, the media is engaging in...
The Ground Reality of Revoking the Affordable Care Act
Why are we talking about this? Because after the individual mandate installed by the Affordable Care Act (ACA)—which required a majority of Americans to enroll in some form of health insurance or pay a fine—was eliminated in 2017, senators and some states have been...
Podcast 34: Improving Drug Safety
On this week's episode of the podcast, Bob reprises his interview with Janet Woodcock, the director of the Center for Drug Evaluation and Research (CDER) at the FDA, about the hurdles to reshoring drug manufacturing to the U.S. Currently, roughly 80 percent of...
Rebate Reform: How Will Patients Benefit?
The debate over whether the rebate system that currently exists in the U.S. is beneficial for patients or payers or pharmacy benefit managers (PBMs) has been endless. Now, a new report from the Center for Medical Economics and Innovation at the Pacific Research...
Understanding United Healthcare’s Accumulator Policy
The following post is from Julie Baak, the Practice Manager for the Arthritis Center in Saint Louis, Missouri and a fierce patient advocate. What is a Copay Accumulator? Copay accumulator programs target the most costly specialty drugs. These drugs often have copay...
Episode 33: Can You Get Trump’s Covid Cure?
On this episode of the podcast, Terry and Bob argue that every patient should get the same high-value care that President Trump received to successfully treat his Covid-19. Here's the list of medications that Trump received: Remdesivir Regeneron monoclonal antibody...
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.”