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
ie patShare 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
Patients living w/ rare diseases are well aware of obstacles to drug development.
"Drug development is a long & challenging process from drug discovery to approval... The chance of success is very low" says Tayjus Surampudi #Duchenne patient advocate. https://t.co/TKzqjMK31q
ICER uses quality-adjusted-life-years or #QALYs in its framework.
"In any other industry, a QALY-like system that punishes the most vulnerable would rightly be viewed as an outrage," says @SuePeschin President/CEO @Aging_Research.
#ICERWatch https://t.co/BM3AbVX9OI
Advocacy News
Study: Patient out-of-pocket costs up 4x in 12 years
Millions of patients with health insurance are being hit with higher out-of-pocket costs. One study finds health care deductibles are up 4x since 2006.
To lower prescription drug prices, fix existing drug discount programs
One of the few policy priorities that Democrats share with President Trump is reducing prescription drug prices. At his recent State of the Union address, Trump said he wants his administration “to make fixing the injustice of high drug prices one of our top...
How Maine seniors can see lower drug prices
Patricia Bernard of Falmouth has unwittingly become the face of American seniors facing high drug costs. Sen. Susan Collins recently invited Bernard to tell her story before the Senate Aging Committee, which Collins chairs. Diagnosed with rheumatoid arthritis 25 years...
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.”