Learn where lawmakers stand on issues of importance to patients with chronic and life-threatening illness.
By Surabhi Dangi-Garimella, Ph.D. President Biden signed an Executive Order on October 14, 2022, that tasks the HHS Secretary to engage the Innovation Center (Center for Medicare and Medicaid Innovation, CMMI) with testing healthcare payment and delivery models to...
Patients Rising Now, along with 26 other patient groups, sent a letter to Congressional leadership as well as Senate HELP committee and House E&C leadership urging support for generic drug policy riders. The 117th Congress will soon enter the final session period...
Patients Rising Now Guide for Commenting on ICER’s Draft Evidence Report on Treatments for Relapsing Forms of Multiple Sclerosis
On October 17, 2022, ICER released its draft evidence report, “Oral and Monoclonal Antibody Treatments for Relapsing Forms of Multiple Sclerosis.” This document provides a framework for considering what aspects of ICER’s review are important to people with multiple...
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.”