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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
Season 2 | Episode 9: New Efforts Against Colon Cancer
On this episode of the podcast, Terry and Bob discuss new approaches to treating colon cancer. This issue hits especially close to home for Terry, whose sister-in-law is undergoing treatment for this condition. They note how this population has been hit especially...
Comment Letter for the CMMI Demonstration Project on the Six Protected Classes
Patients Rising Now is a national nonprofit organization dedicated to advocating for the rights of patients with chronic and life-threatening illnesses. We support policies aimed at advancing patient access to and affordability of healthcare. We are writing to ask...
Season 2 | Episode 8: Barriers to Rare Disease Treatments
On this episode of the podcast, Terry and Bob discuss the barriers to care faced by those who have rare diseases. Feb. 28th is Rare Disease Day, which raises awareness with policymakers and the public about rare diseases and their impact on patients' lives. They...
Season 2 | Episode 7: Promoting Diversity in Science
On this episode of the podcast, Terry and Bob discuss how dismantling systemic barriers to healthcare leadership roles can help minority communities increase their representation in the healthcare space. They point out how the entire healthcare industry can benefit...
CMS Opens Up A Path for Value-Based Payment Agreements
By Surabhi Dangi-Garimella, Ph.D. Following a proposed rule in summer 2020, the Centers for Medicare & Medicaid Services (CMS) has finalized a rule to allow state Medicaid agencies to enter into innovative value-based pricing agreements with manufacturers. This is...
Tennessee’s Medicaid Block Grant Pilot Could Restrict Access to the Most Vulnerable
By Surabhi Dangi-Garimella, Ph.D. One of the Trump Administration’s last healthcare moves was approval of an annual Medicaid block grant for Tennhat the state’s Messee—a conservative agenda item tedicaid program, TennCare, expects will give it more flexibility....
Get Involved
Drug Utilization Review Board Advocacy Toolkit
DUR Boards and P&T Committees determine how each drug must be covered by Medicaid in that state. This often means putting criteria in place to limit or even restrict coverage. Some examples of those limits include age requirements, step therapy requirements, or even invasive tests for the patient. These limits can have the practical effect of blocking patient access to a drug.
We Created a Toolkit You Can Use
Visit our toolkit to learn more about the issues, learn how you can get involved, develop your own statement, and use the letter templates to write to your represenatives.
Share your story
Help us get your voice heard. Your personal story is a powerful call to action.
Patients are speaking out and sharing their stories at the national and state level to affect change. Policy changes start happening when patients band together district by district, city by city, and state by state to rise up and make their voices heard. Whether it is a city council in Philadelphia, a state legislature in Massachusetts, or the President of the United States — your voice matters.
Why Stories Matter
We use patient stories to bring attention to patient access issues at the federal level and in statehouses around the country. We’ll let policymakers and elected officials know patients are rising now.
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.”