The most powerful way to spread understanding and compassion is to tell your story to others. Stories can encourage giving and motivate legislators, but they also bind our community together.
We’re telling real patient stories about healthcare in America.
Healthcare should be about a patient working with their care provider to find the right treatment. Period.
Of course, that’s not how it really works. There are insurance barriers to access and affordability. Expensive markups by secretive pharmacy benefit managers. And callous value frameworks that value everything but the patient.
The answer: Your Patient Story.
BRINGING THE PATIENT VOICE TO EVERY CONVERSATION ABOUT HEALTHCARE
We believe that the true measure of value in our health care system starts with the concerns and goals of patients. Not payers. Not providers. Not manufacturers. But you, the patient.
Every day, patients living with rare diseases and chronic conditions face real barriers to accessing the right treatment.
- A retired grandmother who loses access to her arthritis treatment because of a midyear bait-and-switch by her insurance company.
- A working mom who must live with migraine pain because of step therapy requirements by her pharmacy benefit manager.
- A toddler who must overcome a flawed value framework before accessing a life-saving treatment.
Treatment decisions should be left to patients working with their care providers.
By sharing the patient’s perspective on access, value and treatments, we can overcome the barriers that prevent patients from accessing the right treatment – right away.
Patients Rising Stories
Actions you can Take
Review our state and federal actions below – help make a difference.
Our Patient Advocacy platform provides a full suite of advocacy initiatives. It focuses on cultivating and activating a diverse grassroots network of patients, families and allies to advocate for positive change in our complex healthcare system.
We work at community, state and federal levels supporting reforms and legislation aimed at advancing patient access to affordable, quality healthcare.
Show your support for S. 644 and H.1053 which would ban co-pay accumulator programs in Massachusetts. Many Insurers and PBMs are now utilizing copay accumulators to stop copay assistance from counting towards a patient’s deductible and maximum out-of-pocket spending....
There is a constant drum beat around the rising cost of drug prices, with little discussion of the benefit design in plans whether they are government or employer sponsored. Medicare Part B requires patients without supplemental coverage to pay a 20% copay on all...
In March 2021, Congress introduced a bipartisan bill that will improve the development of treatments and access to therapies for those suffering from rare disease conditions. Called the STAT Act (H.R. 1730/S. 670), the bill seeks reforms within the Food and Drug...
Advocacy Master Class
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 are thrilled to announce the launch of our Advocacy Master Class designed to train patients, caregivers, and citizens in the art of healthcare advocacy.
Guide to Commenting on ICER’s Draft Evidence Report on Treatments for Hypertorphic Cardiomyopathy
On August 18, 2021, ICER released its draft evidence report, “Mavacamten for Hypertrophic Cardiomyopathy: Effectiveness and Value.” This guide provides a framework for considering what aspects of the new hypertrophic cardiomyopathy treatment are important to patients and their families, and how to consider presenting those perspectives.
Drug Utilization Review Board Advocacy Toolkit
DUR Boards and P&T Committees determine how each drug must be covered by Medicaid in that state. This often means putting criteria in place to limit or even restrict coverage. Some examples of those limits include age requirements, step therapy requirements, or even invasive tests for the patient. These limits can have the practical effect of blocking patient access to a drug.