CMS: Don’t Let Insurance Take My Copay Assistance!

The Centers for Medicare Medicaid Services has proposed new health insurance regulations that will allow insurance companies to pocket our copay assistance and not count it towards our annual deductibles.

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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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Support the Personalized Care Act of 2020

Americans are Speaking Up and Want Greater Access to Care through Affordability, Transparency, and Choice. Please write to your representatives and president to ask for their support of HR 5596 which strengthens and expands access to Health Savings Accounts, which are...

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.


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A report by the Institute for Clinical and Economic Review could affect patients' ability to access to three new acute migraine treatment innovations. #migraine #ICERWatch

We support copay assistance programs, which reduce patients’ out-of-pocket health care costs.

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Advocacy News

What You Need to Know About the Opioid Workforce Act: HR 3414

What You Need to Know About the Opioid Workforce Act: HR 3414

What You Need to Know About the Opioid Workforce Act (H.R. 3414/S. 2892) A bipartisan bill was introduced in the US Congress in 2019 to help fund additional residency positions in hospitals and health systems in an effort to help stem the opioid crisis that the...

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.”

Carolanne Monteleone

Gastroparesis Patient, Pennsylvania

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.”

Hannah Page

Borderline Personality Disorder, New York, NY

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.”

Bob Tufts

Multiple Myeloma, New York, NY