Good Policies Can Help Rare Disease Patients Overcome Access Challenges

New roadmap guides policymakers on steps to shorten diagnostic journeys and improve treatment paths

WASHINGTON, May 20, 2024 /PRNewswire/ -- It takes the average rare disease patient six years to get the right diagnosis. And even once they have a diagnosis, patients may face additional access challenges.

"The Right Care for Rare" is a new roadmap guide from the Alliance for Patient Access that walks policymakers through various hurdles rare disease patients face on their journey from diagnosis to treatment, as well as potential policy solutions for these challenges.

Patients may face access barriers, such as utilization management or cost sharing, which can hinder their ability to get patient-centered care. Good policies can simplify and improve the process of getting patients to the right diagnosis and onto the right treatment.

The roadmap outlines that policymakers should:

• Empower patients
• Reduce access barriers
• Confront payment issues
• Protect and encourage innovation

About Rare Diseases

• An estimated 10% of Americans live with a rare disease.
• There are more than 7,000 unique rare diseases, which are conditions that impact fewer than 200,000 people.
• Roughly 95% of known rare diseases don't have an FDA-approved treatment.

STATEMENT FROM JOSIE COOPER, EXECUTIVE DIRECTOR OF THE ALLIANCE FOR PATIENT ACCESS: "Every rare disease is different, but common challenges can make all rare disease patients' lives hard. The right policies can ensure patients have one less thing to worry about so they can focus on themselves, their health and their families."

Learn more by reading "The Right Care for Rare."

About the Alliance for Patient Access

The Alliance for Patient Access is a network of policy-minded health care providers who advocate for patient-centered care.

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SOURCE Alliance for Patient Access