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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.

Important information re the Joint Hearing on the surplus in the Trust Fund for the 1986-1990 Hepatitis C Settlement Agreement

As you know, the Attorney General of Canada has requested that the entire quarter-billion dollar surplus in the Trust Fund for the 1986-1990 Hepatitis C Settlement Agreement be allocated to “Canada.” The CHS, along with dozens other organizations, strongly objects to the surplus being paid out to the federal government. We strongly support the Joint Committee’s Notice of Motion to enhance the benefits to claimants.

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.

Applications regarding the surplus will be considered by the courts at a Joint Hearing that will take place in Toronto on June 20-22, 2016 at the Courthouse, 361 University Avenue, Toronto, ON - courtroom 6-1 from 11:30 a.m. to 5:30 p.m. (Eastern Time).

There will also be video links in British Columbia and in Québec where you can watch the Joint Hearing live at the following locations:

Vancouver Law Courts - courtroom 52
800 Smithe Street, Vancouver, BC
from 8:30 a.m. to 2:30 p.m. (Pacific Time)

Montreal courthouse - courtroom 15.04
1, Notre-Dame East Street, Montréal, QC
from 11:30 a.m. to 5:30 p.m. (Eastern Time)

The CHS encourages all interested class members to attend the hearing and fill the three courtrooms, especially the one in Toronto.

Click here for all the details on the issue.

Good news! Manulife to underwrite eligible Canadians who test HIV-positive

April 22, 2016 – The insurance company Manulife announced that it will now accept life insurance applications from people who have tested positive for the human immunodeficiency virus (HIV), the first insurer in Canada to do so.

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:

Streaming:
4-minute segment: www.HealthandFamily.ca/VonWillebrand
1-minute segment: www.healthandfamily.ca/show/von-willebrand-disease-spreading-awareness-2

Downloadable:
4-minute segment: https://vimeo.com/user4577516/review/162552873/83d988cf96
1-minute segment: https://vimeo.com/user4577516/review/162552869/9b6a10ba5a






Factor VIII and IX: CBS tender results announced

April 18, 2016 - Canadian Blood Services (CBS) has recently announced the results of the tender for recombinant factor VIII and IX for the April 1, 2016 – March 31, 2018 period for Canada, excluding Quebec. See the communication from Canadian Blood Services entitled:
Canadian Blood Services Recombinant Factor VIII and Recombinant Factor IX Contracts and Contract Awards.
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.

These contracts will result in a large number of patients with hemophilia A switching products. Following similar tender processes in recent years in countries such as Ireland, the United Kingdom 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.

See the Canadian Blood Services Question & Answer document entitled rFVIII and rFIX Request for Proposal: Product Supply and Transitioning for details on product switching.
The Q&A refers to “significant savings.” These are in the tens of millions of dollars annually.

While there are clear suggestions that patients using Kogenate FS switch to Bayer’s new product Kovaltry, an identical molecule, later this spring or summer, and that users of Advate, which will be phased out over the next several months, switch to Pfizer’s Xyntha, this document states that such decisions are made jointly by the physician and patient.

Octapharma’s Nuwiq is also being introduced into Canada. Biogen’s extended half-life Eloctate has been available since February.

With regard to factor IX, Pfizer’s Benefix remains the predominant product. Biogen’s extended half-life Alprolix is now available. The plasma-derived FIX product Immunine, while not part of the tender process, remains available.

MyCBDR app now available!

MyCBDR app is now available for free from the Google Play Store (Android version) and the Apple Store (iOS version). If you are already using the MyCBDR website to record your treatments and bleeds, you can log in to the app using your MyCBDR credentials.

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 help@mycbdr.ca.

N.B. The French-language version of the app should soon be available.



CHS support to research and market studies

Several times in the past, the CHS has invited the bleeding disorder community to participate in research and market studies. Once again, we wish to reinforce the importance of these projects and the benefit for our community to participate. Research and market studies are crucial to the advancement of care and treatment. This is your chance to voice your concerns and priorities when it comes time to your care and treatment or those of your child. At many levels, these studies are often one step closer towards a better quality of life.

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.

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Click here for more details on the MARKET studies currently recruiting participants.


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

   
                                    iOS                                               Android




Products in the pipeline - NEW UPDATE (February 29, 2016)

Never have so many clotting factor concentrates been in development or “in the pipeline”. So many, in fact, that it has become difficult to keep track of them all. So the CHS is publishing five charts, one each for factor VIII and von Willebrand factor, factor IX, inhibitor products, other coagulation products, and one related to gene therapy, to help everyone stay informed of their progress through preclinical work, clinical trials and regulatory approval.

Click here for more details.




Hemophilia Today - March 2016









E-novella spreading the word on bleeding disorders on Wattpad

One in 100 Canadians carries an inherited bleeding disorder gene, yet so many remain undiagnosed. In an effort to educate a younger audience about the symptoms and risks of bleeding disorders, we’ve developed an e-novella – entitled ‘A Negative’ – to spread the word in an engaging and memorable way.



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