About the Disease

Hemophilia B, also known as Christmas disease or factor IX deficiency, is a rare, degenerative disease which occurs in approximately 1 in 25,000 male births. People with the condition are particularly vulnerable to bleeds in their joints, muscles, and internal organs, leading to pain, swelling, and joint damage. Hemophilia B can range from mild (factor IX levels between 5 and 40% of normal), to moderate (factor IX levels from 1 to 5% of normal), to severe (factor IX levels less than 1% of normal).

 

Current treatment for moderate to severe hemophilia B includes lifelong prophylactic infusions of factor IX to temporarily replace or supplement low levels of the blood-clotting factor; however patients may still experience spontaneous bleeding episodes, limited mobility, joint damage or severe pain as a result of the disease. A new, one-time gene therapy infusion treatment was recently approved to enable people living with hemophilia B to produce their own factor IX, which can help reduce the rate of annual bleeds, as well as help reduce or eliminate entirely the need for prophylactic therapy.

 

About our Patient Care

Our dedicated Care Team will work with the physician's office and insurance on a patient's behalf to give our patients more time to focus on their treatment and quality of life. We are here to listen, provide counseling on treatment, including side-effect management, and assist with sourcing third-party financial assistance. In addition, Orsini is one of the specialty pharmacies selected to provide patients with access to an FDA-approved, adeno-associated virus vector-based gene therapy.

 

As part of treatment, we provide:

Dedicated Care Team

We provide prescribers and patients with a dedicated Care Team, including a primary pharmacy contact, clinical education, side-effects management, scheduled refill calls, and a direct phone, fax, and email address.

Shipping and Coordination of Care

We provide free overnight delivery of medications and manage the coordination of care between prescribers, sites of care and patients to ensure dispenses and drug delivery align with the date and location of service.

Financial Assistance

We successfully identify and assist in enrolling patients into manufacturer co-pay and foundation support programs to minimize a potential financial burden to patients given the high cost of specialty medications.

24/7/365 Access to a Pharmacist

We provide prescribers and patients access to a pharmacist 24/7/365 to ensure patients always have access to the care they need.


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Supported Treatments

Click on the specialty drug name below to expand and see more information.

HEMGENIX® (etranacogene dezaparvovec-drlb)

Partnering with Prescribers

Licensed prescribers can submit a completed enrollment form directly to our Admission team. We will begin the process and communicate with your office every step of the way.

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