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Hemophilia Today - August 2017

CHS Webinar, SET - Thursday, September 14, 2017

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 second webinar, SET, has been rescheduled for Thursday, September 14, at 8 p.m. ET.

To register, please click on the following link :  bit.ly/webinarSET.

Also, please note that the recording of the first webinar, READY, held on June 28, 2017, can be viewed via the following CHS webpage: www.hemophilia.ca/en/international-development/international-twinning-projects/educational-resources or directly on the CHS YouTube channel.

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.

2016 CHS Annual Report

Paul Wilton succeeds Craig Upshaw as CHS president

Montreal – May 31, 2017 – On Saturday, May 27, Paul Wilton was elected as the president of the Canadian Hemophilia Society (CHS) by its Board of Directors.

Paul Wilton has previously served as president of Hemophilia Ontario and on several CHS committees, including the Governance Committee and the Blood Safety and Supply Committee. He represented the CHS on the Canadian Blood Services' Southern Ontario Regional Liaison Committee. He previously served as director of Hemophilia Ontario's Pinecrest Adventures Camp. Paul has been an invited speaker at several World Federation of Hemophilia World Congresses. Paul has a Bachelor’s degree in Political Science and History and has begun work on a Master’s degree in Public Administration. He works at King’s University College in London, where he was recently elected to the Board of Directors.

'I am honored to follow in the footsteps of so many great leaders in the hemophilia community,” Paul said, “and to help develop new leaders who will help us reach our goal of improving the health and quality of life of all people with bleeding disorders and ultimately find cures.'

Paul succeeds Craig Upshaw, who served as CHS president for seven years. His tremendous leadership contribution was recognized last Saturday evening at the CHS Awards Banquet where Craig received the Frank Schnabel Award. This award, named after the founder of the CHS, is presented to honour a volunteer who, over a number of years, has rendered distinguished services and noteworthy contributions to the mission and objectives of the CHS.

“It has been a great privilege to have had the opportunity to lead the CHS,” Craig said.  “We have been able to advocate on many issues that have made a significant and positive impact on the lives of those living with bleeding disorders. I took on the role with trepidation knowing the achievements of all the presidents who led the organization and left great legacies. I feel confident that I am leaving the organization in good standing with many important initiatives that I will continue to support. I am confident that Paul will build upon our successes and further deliver on the vision and mission of the CHS. Thank you to all the volunteers as well as the staff for everything that you do to improve the lives of those with bleeding disorders.”

Click here for the list of CHS Board members elected for 2017-18.

Contracts for ELOCTATE and ALPROLIX renewed by CBS

Montreal – March 29, 2017 – The Canadian Hemophilia Society has learned that contracts for Eloctate, an extended half-life recombinant factor VIII, and Alprolix, an extended half-life factor IX, both manufactured by Biogen, have been renewed by Canadian Blood Services (CBS) for the period April 1, 2017 to March 31, 2018.

Contracts for other factor VIII products—Kovaltry, manufactured by Bayer, Nuwiq, manufactured by Octapharma and Xyntha, manufactured by Pfizer—and the factor IX product, Benefix, manufactured by Pfizer, took effect on April 1, 2016 and run until March 31, 2018.

CLICK HERE to read full article.

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.

Ontario and British Columbia expand treatment access to chronic hepatitis C (CHC) patients

As of February 28, Ontario became the first province to reimburse Zepatier®  (elbasvir/grazoprevir), a single one pill, once daily, 12 week no ribavirin regimen for most patients, and will be followed by British Columbia on March 21.

In addition to patients with liver fibrosis stage F2 , patients with liver fibrosis stage F0 and F1 with poor prognostic factors, who had no public access to a potential cure under existing public plans, are now eligible for treatment.

Patients with CHC genotypes 1 and 4, with chronic kidney disease (CKD) and intraveinous drug users will have access to treatment.

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.

HIV “Undetectable equals Untransmittable” (U=U)

Recent studies have shown that people living with HIV on HIV treatment who have had an undetectable viral load for more than six months and continue to have an undetectable viral load, do not sexually transmit HIV, with or without the use of condoms.

This news is considered the most significant development in the HIV world since the advent of effective combination therapy 20 years ago.

The Consensus Statement of the Prevention Access Campaign is designed to promote “Undetectable equals Untransmittable” (U=U) and the campaign can be endorsed by going on the campaign website.
For more information, click HERE.


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

, 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.


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.

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