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Join the Fight to Demand Transparency in Health Care

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Join the Fight to Demand Transparency in Health Care

Patient Manifesto


"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."

Patient: Carolanne Monteleone

Diagnosis: Gastroparesis Patient

From: Pennsylvania


"It is essential to find a doctor or team who not only listens to and believes you but also respects you, because otherwise it’s all too easy to get overlooked when you need help and end 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 because without the self-knowledge that gave me, I can’t imagine how much more painful my childhood might have been. As an adult, I’ve learned the difference between holistic, customizable care and the one-method-fits-all approach, and I’ve experienced the confusion and claustrophobia that the latter can produce. 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." 

Patient: Hannah Page

Diagnosis: Borderline Personality Disorder

From: New York, NY


My health insurance company will provide clear, understandable summaries of benefits and costs. When I am choosing insurance coverage and once I am enrolled, I will be able to easily find out exactly which doctors, hospitals, and medicines are covered. I will have a clear understanding before buying insurance what potential out-of pocket-costs will be. My insurance company will make clear the process for appeal if my coverage is denied.


"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."

Patient: Bob Tufts

Diagnosis: Multiple Myeloma 

Location: New York, NY




"When I called the insurance company they would ask me for the same information multiple times, the call would often be dropped and the tone of their "customer service" representative was exasperated or impersonal. I should be assigned one person to consistently handle whatever matter I'm dealing with, especially, if it's going to require research or multiple correspondence.  There’s a feeling of detachment, as if I’m just a number, not a person in a vulnerable state trying to receive the care I’ve paid for.” 

Patient: Sara Tate

Diagnosis: Infertility 

From: Virginia