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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
New Government, Revised Rules? Seniors and Prescription Drug Cost-Sharing
By Surabhi Dangi-Garimella, Ph.D. Prescription drugs can be expensive, and for patients undergoing treatment for certain chronic conditions, cost-sharing is a heavy financial burden, especially if you are a Medicare beneficiary on a fixed income. While bills...
S2 | E2: Mystery Hospital Costs
On this episode of the podcast, Terry and Bob discuss the implementation of hospital price transparency, which took effect on January 1st. They also analyze the Covid-19 vaccine rollout, which has been slowed by bureaucratic inertia and social justice complexity. They...
S2 | E1: Will Democrats Help or Hurt Patients?
On this episode of the podcast, Terry and Bob discuss what a Democratic majority in Washington D.C. means for patients. With Democratic Senate candidates in Georgia winning their runoff races, federal Democrats will now control the Senate, the House of...
Episode 45: Pro-Patient Agenda Revealed
On this episode of the podcast, Terry, Bob, and Kate discuss their pro-patient agenda for the Biden administration. They've identified the following eight policy changes as the most important ones facing American patients: (The Patients Rising Podcast has covered many...
Episode 44: Patients Hurt by Most Favored Nation Rule
On this episode of the podcast, Terry and Bob discuss President Trump's "most favored nations" rule which ties federal reimbursements for Medicare Part B drugs to other developed nations' prices. In other words, this rule is a de facto price control on Part B drugs,...
Episode 43: Navigating Legal Hurdles
On this episode of the podcast, Terry and Bob discuss the ongoing need for patients with chronic diseases to access legal advice. From employer discrimination to financial toxicity, legal consultation provides much-needed peace of mind and guidance. They highlight...
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.”