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CHS Statement on the SIPPET study
Some studies showed a lower rate of inhibitor development with plasma-derived FVIII; other studies did not. The studies, however, were quite small and retrospective or observational in nature, and so they didn’t provide conclusive results.
The SIPPET study is the first prospective, randomized trial to attempt to answer the question.
CLICK HERE to read more about this important topic.
Moving Ahead with Hemophilia - Research study
The current study aims to understand the needs of Canadian adults 40 years of age and older living with hemophilia A or B. Results from this research will be used to design health education and programs for the adult hemophilia community.
Please CLICK HERE for all the details.
2016 World Hepatitis Day
Important information re the surplus in the Trust Fund for the 1986-1990 Hepatitis C Settlement Agreement
It is now up to the courts to decide what to do with the surplus in light of the recommendations, including deciding that all or a portion of it should be kept in the Trust Fund.
Click here to read the official statement objecting to the 86‐90 Trust Fund surplus being paid out to the federal government.
Click here for a comprehensive Q&A document on the overall issue.
Click here for more details on the issue.
The Canadian Hemophilia Society and the Patient Reported Outcomes Burdens and Experiences (PROBE) study group invite you to participate in a multinational, patient-focused research study to investigate and directly probe patient perspectives on outcomes that affect your own life and care.
Click here for all the details.
2015 CHS Annual Report
Factor VIII and IX: CBS tender results announced
It is important to note that the decision surrounding these contracts was a unanimous one by the selection committee, involving experts from CBS, the Association of Hemophilia Clinic Directors of Canada, the Canadian Association of Nurses in Hemophilia Care and the Canadian Hemophilia Society. The evaluation was based on safety, efficacy, quality and cost.
The new contracts for recombinant factor VIII and IX will result in an estimated 40 to 50 million dollars of savings for the health care system annually. These savings are in addition to significant savings realized in the 2013-16 period over previous years.
A large number of patients with hemophilia A will be switching products as Advate, manufactured by Shire (formerly Baxalta) is phased out over the next several months. Following similar tender processes in recent years in countries such as Ireland, the U.K. and Australia, resulting in massive product switching, no negative outcomes were observed. The province of Quebec went through a similar mass switch in rFVIII products (Helixate FS to Xyntha) one year ago, and the process went very smoothly.
In addition, Bayer’s Kogenate FS will be replaced by the company’s new recombinant FVIII product, Kovaltry, also over the next several months.
While supply factors suggest that many patients using Kogenate FS will switch to Bayer’s new product Kovaltry, and that many users of Advate will switch to Pfizer’s Xyntha, such decisions are made jointly by the physician and patient/caregiver, and should not be imposed.
There are now four rFVIII products available for use in provinces served by CBS: Xyntha, manufactured by Pfizer; extended half-life Eloctate, manufactured by Biogen; Kovaltry, manufactured by Bayer; and Nuwiq, manufactured by Octapharma.
With regard to factor IX, Pfizer’s Benefix remains the predominant product. Biogen’s extended half-life Alprolix is also available. The plasma-derived FIX product, Immunine from Shire-Baxalta, while not part of the tender process, remains available.
The product switchovers will take place progressively across the country this summer and fall. Treatment centres will be in touch with their patients at the appropriate moment.
CHS support to research and market studies
These studies, however, need our community to gather sufficient data to be relevant.
Please take the time to see what is presently happening with regards to research and market studies and to see if you could take an active part in them.
Click here for more details on the RESEARCH studies currently recruiting participants.
Click here for more details on the MARKET studies currently recruiting participants.
Good news! Manulife to underwrite eligible Canadians who test HIV-positive
Click here to read Manulife’s press release.
Spreading awareness about von Willebrand disease
A 4-minute von Willebrand disease segment aired as part of the “Canadian Health & Family” broadcast on CTV on, May 14, 2016.
You can watch the segment by clicking on the following links:
4-minute segment: www.HealthandFamily.ca/VonWillebrand
1-minute segment: www.healthandfamily.ca/show/von-willebrand-disease-spreading-awareness-2
4-minute segment: https://vimeo.com/user4577516/review/162552873/83d988cf96
1-minute segment: https://vimeo.com/user4577516/review/162552869/9b6a10ba5a
MyCBDR app now available!
If you have not registered for MyCBDR yet, you can submit your request at www.mycbdr.ca/MyCBDR/Account/Register. Remember to select your HTC from the drop-down menu available at registration. The AHCDC and McMaster University are working continually to enrol more HTCs into the CBDR network. In case you belong to an HTC that is not yet using CBDR, you can still request a MyCBDR account by selecting “Holding Center for MyCBDR” as your HTC.
Please feel free to send in your questions, comments and feedback to email@example.com.
N.B. The French-language version of the app should soon be available.
Me, the app that could end years of suffering for thousands of women
Click here to read the press release sent out on International Women's Day about this important new tool
Products in the pipeline - NEW UPDATE (February 29, 2016)
Click here for more details.
Hemophilia Today - March 2016
E-novella spreading the word on bleeding disorders on Wattpad
Playing off the popular Harlequin romance genre, ‘A Negative’ tells the story of a young woman unknowingly living with von Willebrand disease. We’ve published the e-novella on Wattpad – the world’s largest online community of writers and readers – in order to connect with young women across Canada. This unique approach introduces the issue into a different medium, enabling us to speak to and educate an engaged but unsuspecting audience.
CLICK HERE for the press release.
CLICK HERE to read 'A Negative'.
Menstrual Assessment Chart (PBAC)
A bandage is not enough.
HELP SPREAD THE WORD ABOUT INHERITED BLEEDING DISORDERS.
Click here for more information about this important public awareness and outreach campaign or to download promotional material.
You and your family depend on research...
Make a difference - Help save lives
We can stop the suffering of those living with hemophilia and other bleeding disorders. But we can't do it alone. Only with the generous financial support of caring Canadians can we make our dream come true.
To support us