PQA to Host Forum on Quality Medication Use in Rare Disease

The Pharmacy Quality Alliance (PQA) is bringing leaders in the rare disease community together to discuss quality medication use in a one-day forum on Nov. 7 in Arlington, Virginia.

The event, "PQA Convenes: Quality Medication Use in Rare Disease," features panels with patients, caregivers and patient advocates, and representatives from specialty pharmacies, pharmaceutical industry organizations, and public and private payers, who will share their perspectives on what constitutes quality and how to improve it. 

Micah Cost, Pharm.D., M.S. CAE

“Medication therapies and treatments for rare diseases are both complex and challenging, and evaluating what constitutes quality and how to improve it is essential to ensuring quality medication use,” said PQA CEO Micah Cost, Pharm.D., M.S., CAE. “Exploring the many factors that drive high-quality rare disease medication use is an important goal for PQA members. As a multi-stakeholder and consensus-based organization, PQA is excited to bring our diverse members and rare disease leaders together to advance the conversation on how to improve care quality and patient outcomes.”

Healthcare organizations use a broad range of largely internal quality indicators to evaluate rare disease care.

This PQA Convenes event will:

• Highlight the importance of quality in rare disease medication use;
• Discuss the barriers to medication access;
• Focus on the care that surrounds a rare disease medication prescription and positions; patients for the best outcomes possible; and
• Build a foundation for consensus on quality issues among patients and the diverse payers, providers, clinicians and others who care for them.

“Ensuring the quality of medication use is critically important for rare disease patients, payers, clinicians, specialty pharmacies and everyone with a role in the care process,” PQA Chief Engagement Officer Richard Schmitz said. “Like all patients, individuals with rare disease want medications that are accessible, safe, effective and help them achieve the best outcomes possible.”

The challenge of improving medication use quality in rare disease is similar to that of conditions that affect small populations but are not strictly defined as rare. The insights and approaches to addressing one will benefit both. Variations within type 1 diabetes, for example, often lead to small populations when considering the origins, progression and treatment of disease.

PQA Convenes is from 8:00 a.m.-2:00 p.m. at the Renaissance Arlington Capital View. Approximately 200 attendees from PQA member organizations and individuals and organizations interested in rare disease are expected to attend.

The event immediately proceeds the 2024 PQA Leadership Summit, which is November 7-8, at the same location.