Thanks for reading the first email update from the St. Michael's Hemophilia Clinic Team to all our patients. We’ll periodically send you updates related to the clinic as well as resources and information you’ll find useful.
The holiday season is right around the corner, please note the clinic will be closed from Friday, December 22nd until Tuesday, January 2nd. For urgent issues only, the clinic will open on Thursday December 28th from 9am until 12pm.
If you need to speak with someone over the holidays, please contact the on call hematologist through hospital locating at 416.864.5431.
Update on Clotting Factor Concentrates
The Canadian Blood Services (CBS) has signed new contracts for provision of factor VIII and factor IX concentrates, to take effect in April 2018. As a result, some of you will have to change the concentrate you are using. There is no rush; we will phase in these changes over several months. Although changing products can be disruptive, hemophilia treatment is evolving rapidly, and as the technology improves we expect that product changes will be more common in the coming years. We can assure you that all the available treatment products are safe and effective.
Factor VIII concentrates: Xyntha, Kovaltry, and Nuwiq will continue to be available. Eloctate (Fc-conjugated factor VIII) will no longer be routinely supplied; Adynovate (factor VIII conjugated to polyethylene glycol, known as PEG), will be offered as an alternative longer-acting product. In reality, there are fairly minor differences in half-lives among all these factor VIII concentrates.
Factor IX concentrates: Benefix will continue to be available. The longer-acting concentrate Alprolix (Fc-conjugated factor IX) will no longer be supplied, but another long-acting product, called Rebinyn (factor IX conjugated to PEG), will be available as an alternative. Rebinyn has a longer half-life than Alprolix in most people (on average about 90 hours, compared to about 80 hours for Alprolix).
These products are all different, and at your clinic visits we will speak with you individually to explain these differences, and to help you decide the best choice for you.
Blood Matters Magazine
If you’re not familiar with it, Blood Matters Magazine from Hemophilia Ontario includes information on key bleeding disorders events (past and future meetings, webinars, outings, etc.), information on boards, committees, and working groups that you might like to become involved in, and surveys that you may wish to participate in.
There are also details on various topics relevant to people with hemophilia such the Factor Concentrate Redistribution Program and financial assistance, scholarship, and bursary programs.
Click here to read it
Thanks for reading, and happy holidays from all of us at the St. Michael's Hemophilia Clinic Team!