Advocacy Master Class
Applications are now open for the Advocacy Master Class. Applications close on August 16, 2021.
Be an advocate
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.
Join here, we’ll send actions you can take.
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News & Updates:
News & Insights
Support the Supplemental Security Income Restoration Act
Currently over 8 million Disabled Americans rely on SSI (supplemental security income) in order to survive. Disabled people use SSI for essentials like food, clothes and medical treatment. Currently SSI rules require you to not maintain more than $2,000 in total...
FDA Must Step Up Oversight of Hand Sanitizer Safety
FDA Must Step Up Oversight of Hand Sanitizer Safety By Marlene Wüst Smith, MD Hand sanitizer - it’s the go-to item for protecting our kids, even our “big” kids, those attending college in person. We keep it in our cars, our briefcases, kids’ backpacks, and our purses....
S2 | E28: Take Control of Your Health Data
On this episode of the podcast, Terry and Bob discuss how greater access to personal health data can improve patient access and outcomes. With personal health data and medical records at their fingertips, patients can make the best health choices regardless of their...
What We Need to Know About Standing Orders in Health Care
By Surabhi Dangi-Garimella, Ph.D. Standing orders help the physician share the responsibility of patient care with non-physician members of their care team, such as nurses and medical assistants. These are clinical care protocols based on national clinical guidelines...
Cigna’s Letters to Patients and Providers on Cosentyx
Patient groups, advocates, and providers have seen disturbing media reports about Cigna’s recent letter to patients and providers regarding the use of Cosentyx. In the letter, patients are encouraged to switch to a Cigna-preferred drug, as Cosentyx was removed from...
S2 | E27: Is Your Medical Equipment Safe?
On this episode of the podcast, Terry and Bob discuss new Patients Rising polling showing that Americans are skeptical of European drug price controls and reference pricing. They highlight how Alzheimer's treatment can follow in the footsteps of HIV/AIDS a generation...
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.”