Safe Step Act would protect patients from fail first insurance abuses

Insurance companies would no longer be allowed to unilaterally force patients to fail first on cheaper & less effective treatments under the Safe Step Act.

Warning: Avoid Copay Accumulator in Open Enrollment

Here’s the first thing every patient should check before picking a health insurance plan during open enrollment: Does the plan have a copay accumulator?

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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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Issues & Actions

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More Issues & Actions

Study: Patient out-of-pocket costs up 4x in 12 years

If you’re feeling the pinch of skyrocketing out-of-pocket health care costs, you aren’t alone. Across the country, millions of patients with “good” health insurance are being hit with higher out-of-pocket costs every time they go to access their health care. By one...

The Need for Patient Assistance and Access Programs

Many state, non-profit and corporate prescription assistance and access programs (PAPs) help patients obtain free or nearly free medicines if they qualify. Serving as a safety net for the millions of Americans who lack health insurance or whose insurance does not...

Reforming the 340B Program

Named for section 340B of the Veterans Health Care Act of 1992, Congress enacted the 340B Drug Pricing Program so uninsured and indigent populations treated at community health centers, hemophilia treatment centers, black lung clinics, and non-profit hospitals can get...

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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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ICER’s latest framework “will continue to exclude disease-specific experts, patients, and caregivers from voting panels; and will maintain review schedules that signal a greater commitment to speed than accuracy.” #ICERWatch

The Safe Step Act would prevent #steptherapy abuses in employer-sponsored health plans. This bill is vital reform that helps patients. @patientsrising @terrilox

Advocacy News

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