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What Is a ‘Spoonie’?

If you’re active on the Internet, particularly in groups and forums regarding chronic illness, you’ve definitely noticed the term “spoonie” being thrown around. MORE: Although there’s no cure for hemophilia, there are ways that to manage the disease and avoid bleeding episodes. Spoonie is a term coined…

BAY 94-9027

BAY 94-9027, developed by Bayer, is an investigational treatment for severe hemophilia A. It is a PEGylated molecule of recombinant factor VIII in which the B-domain, a region within the factor, is deleted. The therapy is produced using a baby hamster kidney cell line (BHK-21), and has…

BAX 855

BAX 855 (Adynovate) is an approved factor replacement therapy, developed by Baxter International to prevent and treat bleeding in people with hemophilia A. How BAX 855 is manufactured BAX 855 (or rurioctocog alfa pegol) is a PEGylated molecule of full-length recombinant factor VIII (FVIII) produced in Chinese hamster ovary…

Extended Half-Life (EHL) Products

The recommended treatment regimen for patients with severe hemophilia to prevent bleeding episodes is to replace the deficient clotting factor. However, currently available replacement clotting factors are limited by their relatively short half-lives and require intravenous injections up to three times a week to maintain protective levels. This can have…

Prophylaxis

Prophylaxis is commonly referred to as a preventive measure in hemophilia of regularly infusing blood clotting factor concentrates to avoid bleeding. This approach stemmed from research that patients with mild-to-moderate hemophilia (or those who have clotting factor levels of 1 percent or more) rarely experience spontaneous bleeds and have less joint damage…

How to Create a Family Emergency Kit

The National Center on Birth Defects and Development Disabilities has an online booklet that helps hemophiliacs and their families construct a plan in the event of an emergency. MORE: Initial results from phase 3 hemophilia trial of Emicizumab in children looks promising. The plan focuses on all aspects…

Extended Trial Confirms Alprolix’s Ability to Prevent Bleeding Episodes

A Phase 3 extension trial has confirmed Alprolix’s long-term ability to prevent bleeding episodes in hemophilia B patients, and its safety. Those in the B-YOND extension trial did not develop an immune response against Alprolix. Adults and adolescents were treated for three years, and children under 12 for 18 months. “These results…