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U.S. FDA approves emicizumab

WASHINGTON, DC — November 16, 2017 — The U.S. Food and Drug Administration has approved emicizumab, manufactured by Roche, for the treatment of patients of all ages with hemophilia A and inhibitors. Under the brand name, HEMLIBRA, this is the first new treatment for this patient group in 20 years.

The product is under review by Health Canada and a decision on licensure is expected in mid-2018.

Hemlibra is a bi-specific antibody that acts in a similar way to factor VIII. Based on data from two clinical trials in 109 patients with hemophilia A and inhibitors, it has been shown to dramatically decrease the frequency of bleeds in this patient group. In addition, Hemlibra does not lead to the development of neutralizing antibodies to factor VIII.

Hemlibra is prescribed as a prophylactic (preventative) treatment with once-weekly subcutaneous injections.

The labelling for Hemlibra comes with a “black box” warning to alert physicians and patients about the risk of severe blood clots when breakthrough bleeding is treated with an activated prothrombin complex concentrate (FEIBA).

Phase III clinical trials are underway in patients with hemophilia A without inhibitors. Depending on study results, Hemlibra could be approved for use in this patient group in 2019.

You can read the FDA announcement at: www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm585567.htm.



Webinars READY. SET. GO!

The CHS International Committee is pleased to present a series of three educational webinars in 2017 for volunteers interested in becoming actively involved in international twinning partnerships under the WFH Twinning Program.

The third and last webinar, GO, is scheduled for Thursday, NOVEMBER 30 at 6:00 p.m. Eastern time.



To register, please click on the following link or copy and paste it into your browser:
bit.ly/webinar3GO

Also, please note that recordings of the previous webinars, READY and SET, can be viewed via the CHS YouTube channel.


CBS announces factor concentrate contracts for 2018-2020

OTTAWA – November 1, 2017 – Canadian Blood Services (CBS) has announced the Request for Proposals (RFP) results for clotting factor concentrates for the period of April 1, 2018 to March 31, 2020 with the possibility of two one-year extensions.

The results of two other RFP processes, one for the fractionation of CBS plasma and the other for the commercial supply of Immunoglobulins and albumin, were also announced this week.

CLICK HERE to read the complete statement from the CHS Blood Safety and Supply Committee.

Hemophilia Today - November 2017






Important changes to staffing structure at the CHS

Please read the announcement from the CHS president, Paul Wilton, regarding significant changes in the CHS staffing structure taking effect as of January 1, 2018.




CLICK HERE to read Paul’s message which will be published in the November issue of Hemophilia Today.



Products in the pipeline

Never have so many coagulation therapies 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 four charts, one each for clotting factor concentrates, inhibitor products, non-factor coagulation products that may prove efficacious in both inhibitor and non-inhibitor patients, and gene therapy, to help everyone stay informed of their progress through clinical trials and regulatory approval.

CLICK HERE to access the charts.



Webcasts from Rendez-vous 2017

Webcasts of the Rendez-vous 2017 presentations from the Medical and Scientific Symposium (May 26, 2017) are available on YouTube.

Click here to access the presentations of your choice.


Combination peg-interferon and ribavirin discontinued in Canada

The two combinations of peg-interferon and ribavirin available in Canada, known by the brand names Pegasys and Pegetron, are being discontinued. Pegasys has been discontinued since February 28, 2017, and Pegetron will be discontinued as of September 30, 2017.

However, peg-interferon will still be available on its own through one of the manufacturers and ribavirin is currently being sold separately through other manufacturers. It is therefore still possible to generate a combination, if necessary.


MyCBDR: the promotional video on YouTube!


The CHS produced a promotional video showing how easy and fast it is to report bleeds and treatments to your treatment centre via MyCBDR.

Click on the image to watch the video.




ALSO ...


MyCBDR: The best way to report treatments and bleeds to your health care team.

This flyer has been produced by the CHS to promote the use of MyCBDR to patients. It includes, among other things, a list of the benefits of using MyCBDR, its special features and information on how to register.




The MyCBDR app now available in French

A French version of the MyCBDR mobile app is now available on the Apple Store and Google Play Store. The app is named MonRCTC.

Please note that this is a separate app and hence needs to be downloaded and used separately.

It is very important to follow the instructions below should you wish to use the MonRCTC app.

Current MyCBDR mobile app users who would like to use MonRCTC instead must perform the following steps to swap applications:

  1. Ensure all data recorded in the MyCBDR mobile app has been synchronised to the CBDR database, ie. the user must log on to the MyCBDR mobile app in Online mode and wait for all data to be synchronised. (If desired and to be certain that all data has been synchronised, users can log on to the MyCBDR web application and confirm their data is correct and up to date.)
  2. Log out of the MyCBDR mobile app.
  3. Uninstall the MyCBDR mobile app. 
  4. Install the MonRCTC mobile app from the relevant app store (depending on the user’s device).
  5. Log on to the MonRCTC mobile app and wait for all data to be synchronised.

If you have any questions or concerns please feel free to write to help@cbdr.ca or help@mycbdr.ca so that their dedicated help desk officers can help you.



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.

__________________

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


Menstrual Assessment Chart (PBAC)




Chart in PDF format




“Me”
, a period flow assessment app is also available.

Apple Store: apple.co/1N93E6h

Google Play Store: bit.ly/1SBl8L8














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 is now available. Please read the above message regarding the French app.


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