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Policy Priorities

People with bleeding disorders depend on access to quality, affordable health care.

Access is our bedrock principle

We defend and promote access to safe and effective treatments, as well as access to the quality, affordable coverage that pays for this care. We support the bleeding disorders community by providing information and tools to participate in monitoring, advocating, and supporting federal and state public policies. We work to ensure access to safe therapies and quality, affordable healthcare by mobilizing our community as leaders in rare diseases.

Access to DDAVP Nasal Spray

Background STIMATE® has been unavailable to patients since July 2020, when Ferring Pharmaceuticals and CSL Behring announced a voluntary recall of the product. Patient concerns

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Accumulator Adjuster Programs

Many in the bleeding disorders community rely on patient copay assistance programs to help defray the out-of-pocket (OOP) cost of their prescription drugs. Unfortunately, health insurers increasingly are refusing to credit copay assistance toward patients’ deductibles and OOP maximums.

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Blood Safety

Mindful always of our community’s history, HFA has pledged to remain vigilant and engaged in matters of blood and product safety.

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Copay Maximizers

Copay maximizers are a health plan strategy that harms people with bleeding disorders and other serious health conditions. Health plans and affiliated PBMs use copay maximizers to redirect and drain copay assistance funds. In so doing, health plans profit from copay assistance programs that were supposed to help patients – while creating complexity and confusion, and exposing patients to higher overall health spending.

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Hormonal Therapies

Hormonal or hormone-based therapies are commonly prescribed as first-line therapy for menstruating people with bleeding disorders. HFA will robustly defend continued access to these and all other safe and effective therapies and services that people with bleeding disorders need.

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Medicaid provides essential access to treatment and care for many people with bleeding disorders.

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Medicare provides essential coverage for seniors as well as some younger people with disabilities.

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Prior Authorization

Patients with chronic disorders need the same medicine for long periods of time, often a lifetime. Requiring their medication to be pre-approved multiple times a year, through a lengthy and arcane process, creates unnecessary burdens for doctors and causes unnecessary delays for patients.

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