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.
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Issues & Actions
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 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
"I was in shock, but I was so weak that I couldn't even worry," says a patient billed $540,841.90 for 14 weeks of dialysis care.
This story is why we need reforms that protect patients from surprise medical bills.
https://t.co/OriOXRL3Rz
Patients need protections from surprise medical bills.
"During medical emergencies, or even standard care, we cannot expect patients to keep track of every doctor who treats them to ensure they are staying 'in network,'," says Liz Helms @CAChronicCare
https://t.co/fdKzO5dhjz
Advocacy News
Patients oppose Trump plan to end medical exemption from deportation
More than 100 patient organizations are speaking out and expressing concern with the Trump administration’s plan to end a medical deferred action program, which allows immigrants to delay deportation proceedings on medical grounds.
Punished for insurance? Insured patients pay more for same care
Two patients with the same symptoms receive the same treatment at the same hospital. Same bill, right? Patient Patti Joiner learned the hard way that insurance isn’t health care when she visited a Texas emergency room along with...
New CMS co-pay rule will increase out-of-pocket costs in 2020
Get ready for higher out-of-pocket costs in 2020. Last week, the Trump administration's Centers for Medicare & Medicaid Services quietly announced new co-pay rules that will allow insurance companies to increase patients' out-of-pocket costs in 2020. The news is...
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.”