Podcast 24: Accessing Your Health Records

On this episode of the podcast Terry, Kate, and Bob discuss the effort by patients, patients rights groups, and entrepreneurs to access personal health records. Under HIPAA, patients ostensibly own all their personal health information. Yet, for a variety of reasons,...

Podcast Episode 23: Trump Acts to Lower Rx Prices

On this week's episode of the Patient's Rising podcast, Terry and Bob discuss President Trump's executive orders on prescription drug prices. Recently, Trump signed a series of Executive Orders that direct U.S. Health and Human Services to take steps to try to lower...

Episode 22: The Push for Better Outcomes

On this episode of the podcast, Terry and Bob discuss how the Covid-19 pandemic can accelerate the movement toward value-based medical care and digital medical technologies. Bob speaks with Dr. Mark McClellan, former FDA and CMS chief and current director of the...

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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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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.

 

Position Statements

Patients Rising Now is committed to engaging in policy discussions that impact the access and affordability of care for patients. We carefully review many issues, weigh opinions from experts, talk with patients, then create these position statements.

We hope these statements can help you understand our mission better and contribute meaningfully to your own position on these issues.

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