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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
Recent Policy Changes in the 2021 Notice of Benefit and Payment Parameters (NBPP)
Throughout the country, millions of patients rely on cost-sharing assistance programs, which reduce patient out-of-pocket costs for prescription medications. For many individuals, these cost reductions are significant, allowing them to afford the medications necessary...
Request that Co-pay Assistance Remain Allowable Permanently Under Massachusetts State Law
Co-pay assistance helps to offset the cost sharing imposed by insurers, and allows patients to adhere to their medically needed treatments. They are often the only way patients can access critical medications for a wide array of disease states including, but not...
Episode 19: Prescription Price Transparency
In this week's episode of the Patients Rising Podcast, Terry and Bob discuss the role of Pharmacy Benefit Managers (PBMs) in raising the price and reducing the supply of medications. PBMs are middlemen between drug manufacturers and insurers. They drive up drug...
Episode 18: Covid-19 Exposes Racial Disparities in the Healthcare System
On this episode of the Patients Rising podcast, Terry and Bob discuss how the Covid-19 pandemic has exposed the racial disparities that plague the American healthcare system. They explain how this racial care gap must be closed, so everyone can get the treatment they...
Reimbursement and Policy Changes Needed to Reduce Osteoporosis-Related Fractures
About 54 million Americans are estimated to be suffering from, or are at a high risk for, osteoporosis—a disease characterized by weak bones that are susceptible to fractures. In addition to a healthy diet, preventive screening is recommended to reduce the risk of...
Podcast 17: Better Access to Treatments with The 21st Century Cures Act 2.0
On this week's episode of the Patients Rising Podcast, Terry and Bob discuss the second installment of the 21st Century Cures Act, a successor to the original 21st Century Cures Act passed in 2016. While the original legislation focused on modernizing the discovery of...
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.”