The Power of Story

Develop an advocacy platform that is accessible to the average patient and caregiver and to use that platform to have a measurable impact on awareness and advocacy activities nationwide.

 

That this tool will become an effective way for patients to build the foundations of community and for legislators and advocates to collect information on disease conditions and healthcare issues at the local, State, and Federal level.

 

There are insurance barriers to access and affordability concerns. Expensive markups by secretive pharmacy benefit managers and callous value frameworks that value everything but the patient. We believe that the true measure of value in our healthcare system starts with the concerns and goals of patients—not payers, providers, or manufacturers.

 

The best way to see through all the obstacles and noise…The Patient Story.

 

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.

 

By sharing their stories, patients will be able to shine a light on these issues and how they impact geographical areas, congressional districts, disease communities, and much more.

 

Patients Rising Stories attracts story entries from across the country. Visitors have the freedom to share whatever is meaningful to them, including their inspirations, their social media links, and photos of their choice. But similarities to traditional social media end there. There is no advertising or partisanship, only true patient stories narrated with sincerity for the sake of advocacy and awareness.

 

The freedom to choose the kinds of policy issues they have encountered shows users and visitors just how influential policy decisions can be. This will spawn grassroot extensions of the Stories program, and lend data and power to patient support efforts everywhere.

 

As Patients Rising Stories grows, develops, and patterns emerge it will be able to inspire reports and advocacy efforts to legislators, media, medicine, and patient support communities.