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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 & Insights
S2 | E22: Don’t Be Fooled By Some Supplement Ads
On this episode of the podcast, Terry and Bob discuss the massive nutritional supplement industry and the opportunities and dangers it poses for patients. They note how this market has grown from $25 billion to $45 billion in just several years, buoyed this past year...
Congratulations Connecticut on Banning Copay Accumulators!
Thank you for lending your voice to support Connecticut’s Public Act 21-14 to protect patient access to their medications! Governor Lamont officially signed Public Act 21-14 (SB 1003)! Connecticut now marks the 10th state in the country to ban copay accumulator...
Lend Your Voice to Support the Improving Seniors’ Timely Access to Care Act of 2021
This legislation is the culmination of months of bipartisan, bicameral discussions that included full engagement with all involved stakeholders, resulting in balanced, common-sense legislation that would help protect patients from unnecessary delays in care by...
Wednesday Wake-Up: How did Covid-19 affect Mental Health in the U.S.?
May is Mental Health Awareness Month. We all know that the past year and a half has not been easy. Especially true for the rare and chronic disease communities. On Wednesday, we talked to Ashley Bykerk, Health Legislative Assistant to Senator Amy Klobuchar. Sen....
H.R.3 and H.R.19: Tougher Rules to Reduce Drug Prices and Patient Spending
By Surabhi Dangi-Garimella, PhD Opinions vary on the impact H.R.3 would have on patients and the U.S. health care system as a whole, depending on who you ask. Some of the changes proposed by H.R.3 are directed to redesign the Medicare Part D prescription drug...
Season 2 | Episode 20: Fighting for Mental Health Help
Season 2 | Episode 20: Fighting for Mental Health Help On this episode of the podcast, Terry and Bob discuss how the Covid-19 pandemic has spotlighted the U.S. mental health crisis and the socio-economic disparities in mental health treatment. Terry interviews Dr....
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.”