HFA Introduces Five Pillars of Public Policy

HFA is pleased to announce its Five Pillars of Public Policy, a new policy framework designed to address longstanding issues for patients while presenting a bold, comprehensive approach to solving current and future needs. HFA’s goal is to take a proactive attitude to policy, one that models the best practice of prophylaxis for many bleeding disorder patients – treating issues before they arise.

Our Five Pillars have been designed based on our existing and previous policy work, community research and public knowledge, patient and physician input, and with ease of discussion and understanding in mind. We welcome the community’s engagement on these areas as we work to improve public policy for bleeding disorders patients both now and in the future.

Pillar 1: Early Diagnosis for All

For too long, patients without a known family history, women and girls, and people of color or belonging to disadvantaged communities have gone without diagnosis, or a delayed diagnosis after preventable harm has already occurred. This pillar ensures bleeding disorders are identified early through awareness and policy solutions that ensure proper care and treatment for patients.

Pillar 2: Continuous Coverage for Life

This community has struggled for decades to ensure we have constant access to health coverage that allows us to afford and obtain our medication. This pillar emphasizes the importance of affordable healthcare, which is consistent and tailored to the realities of life with a bleeding disorder, to ensure patients are protected across all coverage types and transitions.

Pillar 3: World-Class Comprehensive Care

Access doesn’t end with insurance. Patients need expert care that follows them throughout life, from childhood through reproductive years and into older adulthood. This pillar ensures that bleeding disorder care is strong, well-funded, and accessible for all Americans by supporting, standardizing, and expanding the existing HTC network across the United States.

Pillar 4: Safety as Duty and Responsibility

Safety in bleeding disorders care must be permanent, transparent, and enforced; not a promise made once, but a system built to last. This pillar treats safety not as a one-time check or solution but as an enduring responsibility, through long-term treatment monitoring, blood product accountability, strong recall protocols, and meaningful patient oversight of new treatment development.

Pillar 5: Clear Pathways to Care

Patients shouldn’t be blocked from the care they’re already prescribed, or the providers they will need for their entire lives. Even with a diagnosis, coverage, and a treatment plan, too many people are stopped by insurers and systems that create barriers to care. This pillar eliminates those barriers, regardless of the source or structure, so that once a patient enters the system of care, nothing stands in their way.

HFA aims to pursue a new way of looking at public policy to benefit people with bleeding disorders across their whole lives. By focusing on policy across a person’s entire lifespan and in consideration of the community wherever they are, HFA can build a better and brighter future for all patients with bleeding disorders.

If you are pursuing legislation that may fit into these categories or would like to work with us on any of these pillars, we hope you will reach out and visit our updated policy page to learn more.