Nothing is more powerful than an elected official hearing directly from a constituent.
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.
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.