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Patient Stories
We want to hear what you’ve experienced as a patient. Take a few moments to share your experience and motivations to advocate for patients.
When our elected officials hear from patients, they listen and take action.
Advocacy Masterclass 2023 Applications are Open
The Advocacy Masterclass, part of our Patient Learning Center, is designed to train patients, caregivers, and citizens in the art of healthcare advocacy.
Latest Updates
Patients Rising Now Statement: ICER’s ‘Updates’ are Thinly Veiled Strategy to Continue Discriminatory Tactics
“Let’s be clear, today’s ‘updated’ ICER Value Assessment Framework should be left in the dark ages.
Patients Rising Now Issues Statement on E&C IRA Hearing
“Yesterday’s hearing highlighted a dangerous divide in American health policy that pits academics and government bureaucrats against patients, doctors, and innovators.
Patients Rising Now Signs onto Letter to Increase Patient Access to Pharmacy Services
Patients Rising Now joined several other advocacy groups in sending a letter of support for H.4066 and S.1425 in the Massachusetts State Legislature to the Joint Committee on Financial Services and Joint Committee on Public Health. The COVID-19 pandemic put into focus...
From Our Patient Advocates
As a patient, I expect to be able to access the health care services I need.
“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.”
As a patient, health care decisions will remain between me and my doctor.
“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.”
As a patient, additional health care costs will be limited by my health insurance company.
“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.”