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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
Patients with compromised immune systems are most at risk for coronavirus. Medicare blocks them from accessing in-home care.
Medicare rules block patients with underlying health conditions, including cancer and asthma, from accessing in-home care during coronavirus epidemic.
72 lawmakers back patients in fight over NBPP co-pay rules
Patients are getting some big-name support on Capitol Hill in the fight to block health care regulations that would increase patient out-of-pocket insurance costs in 2021. Seventy-two members of the House of Representatives are calling on U.S. Department of Health and...
How Do PBM Business Policies Affect Patients?
The past few years have seen some progress in efforts to rein in how pharmacy benefit managers (PBMs) operate. However, a lot remains to be done, especially with respect to state and federal laws that can mandate procedural changes. PBMs are the third-party...
When Your Payer Also Wants to Be Your Care Provider
Consolidation is primarily a business decision that is made to increase monopoly or exercise rigorous control. Over the years, the health care industry has been a constant witness to mergers and acquisitions, such as hospitals buying individual physician practices or...
Opposition to Portions of 2021 NBPP Proposed Rule
We write to express our strong opposition to portions of the recently released 2021 Notice of Benefit and Payment Parameters (NBPP) proposed rule. Specifically, we are concerned that this proposed rule would reverse a patient-friendly policy about how health plans...
Keep the 2020 NBPP Co-pay Accumulator Rule in Place
Tweet Your Legislator - Ask them to Keep NBPP Copay Accumulator Rule In Place Please use the form below to tweet your legislator to ask them to support patients by asking @CMSGov to keep the 2020 NBPP #copayaccumulator rule in place. Patients need this assistance to...
Trump administration proposes insurance loophole to hike patient out-of-pocket costs in 2021
Patients struggling with the high cost of health insurance can expect even higher out-of-pocket costs in 2021, under an insurance regulation proposed by the Centers for Medicare & Medicaid Services. Last month, the obscure federal agency under the Department of...
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.
On Social Media
Twitter Feed
Patients with compromised immune systems are most at risk for coronavirus complications. Medicare blocks them from accessing in-home care.
https://t.co/8UJMlrpGQz #medicare #COVID19
Why are we seeing medical equipment shortages and exorbitantly high drug prices during the coronavirus outbreak?
One reason: Pharmacy benefit managers and group purchasing organizations locking hospitals into exclusive contracts that stifle...
#PBM #COVID
https://t.co/NgxeJIUZzy
Advocacy News
Patients with compromised immune systems are most at risk for coronavirus. Medicare blocks them from accessing in-home care.
Medicare rules block patients with underlying health conditions, including cancer and asthma, from accessing in-home care during coronavirus epidemic.
72 lawmakers back patients in fight over NBPP co-pay rules
Patients are getting some big-name support on Capitol Hill in the fight to block health care regulations that would increase patient out-of-pocket insurance costs in 2021. Seventy-two members of the House of Representatives are calling on U.S. Department of Health and...
How Do PBM Business Policies Affect Patients?
The past few years have seen some progress in efforts to rein in how pharmacy benefit managers (PBMs) operate. However, a lot remains to be done, especially with respect to state and federal laws that can mandate procedural changes. PBMs are the third-party...
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.”