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