Learn where lawmakers stand on issues of importance to patients with chronic and life-threatening illness.
Patients Rising Now signed onto a letter of support for the bipartisan and bicameral Preserving Patient Access to Home Infusion Act (S.2652/H.R.5067). For decades, home infusion therapy services have been a lifeline for millions of Americans by delivering lifesaving...
Surabhi Dangi-Garimella, Ph.D. A rare disease, by the U.S. definition, is one that afflicts less than 200,000 individuals in the population at a given time. Compared to more widespread conditions such as heart disease and diabetes, ‘rare’ diseases do not receive as...
On October 11, 2022, ICER released its draft evidence report, “Fezolinetant for Moderate to Severe Vasomotor Symptoms Associated with Menopause.” This document provides a framework for considering what aspects of ICER’s review are important to women and their...
Patients Rising’s Advocacy Masterclass
At Patients Rising we believe that patients and caregivers hold the power to move the needle in healthcare and create a better tomorrow for all patients and caregivers by raising their voice! That is why we offer our Advocacy Masterclass, designed to train patients, caregivers, and citizens in the art of healthcare advocacy.
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.”
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.”
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.”