About us

About Patients Rising Stories

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. 

SHARE YOUR STORY ABOUT ACCESS & AFFORDABILITY 

Patients are stronger when we speak with one voice. Together, we can stand up for every patient’s right to access the right treatment.

We want to amplify your voice to ensure that all patients are heard.

The goal of Patients Rising Stories is to fight for patient access to vital therapies and treatments. 

We believe access to the right treatment is essential. We’re working to deliver access to new therapies. We want to protect the pipeline of progress from anti-patient algorithms, formularies and value frameworks.

Our goal is to connect other patients, caregivers, physicians, the media, health policy experts and allied healthcare professions — in order to elicit discussions of realistic solutions. We can’t achieve that goal as long the patient’s voice is drowned out in the noise of our current health care debate. 

What We Want to See

Affordable Healthcare. This can be achieved by addressing:

  • Coinsurance $ – the % you pay of covered medical services after the deductible
  • Copays $ – a flat fee you pay for covered medical services after the deductible
  • Premiums $ – the monthly cost of having health insurance
  • List prices $ – transparent prices for services before discounts
  • Sharing in the rebates – cost-sharing should be calculated using a dugs’ rebate-applied-adjusted cost, not the list price
  • Ending Surprise Billing – upfront cost transparency for services would prevent surprise bills after a service
man standing in a protest line holding a sign that reads "Every American Deserves Affordable Healthcare!"

End Medical Discrimination – Delivery of care is not equitable between genders, races, ethnicities, body types, job types, education or income level

Closing geographical gaps – Rural or impoverished areas have less phycsial access to care providers

Easier access to expert Providers – rare and underserved disease communities often settle for providers who do not have necessary expertise

Comprehensive insurance policies that allow for the care and testing of patients need