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Hemophilia Today - March 2017








CHS James Kreppner Memorial Scholarship and Bursary Program




The deadline to submit applications for this year is April 30, 2017.

Click HERE to access the criteria and application forms.



National Endowment Fund Scholarship - University of Ottawa

The objective of this award is to provide financial assistance to students registered in a post-secondary program in a recognized Canadian institution whose lives or families were affected by the tainted blood tragedy between 1980 and 1989 inclusively. The amount of the bursary may reach $3000 maximum. The deadline to submit applications for this year is April 30, 2017.

Click HERE to access the criteria and application forms.

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.

**REVISED** - Common hepatitis C symptoms and treatment side effects with tips for coping with them

The revised version of this very popular publication contains practical tips for managing the symptoms of hepatitis C and the side effects of treatment. The information in this guide, available in PDF format only, has been revised from a booklet first published by the CHS in 2003 and updated in partnership with CATIE in 2011. In 2016, information on direct acting antivirals was added. Also, please check the new handy chart outlining all medications and read about possible side effects, including tiredness, headache and nausea.

Common hepatitis C symptoms and treatment side effects with tips for coping with them


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.




 

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.




Criminalization of HIV Non-Disclosure

People living with HIV continue to be charged with aggravated sexual assault — one of the most serious offences in Canada’s Criminal Code — even where there is no intent to cause harm, no transmission occurs and the risks of transmission are negligible if not zero. The Minister of Justice and Attorney General of Canada, Jody Wilson-Raybould, has denounced the overly broad use of the criminal law in Canada, acknowledging that “the over-criminalization of HIV non-disclosure discourages many individuals from being tested and seeking treatment, and further stigmatizes those living with HIV or AIDS.”

Click HERE for more information.

So why does Ontario continue to unjustly prosecute people living with HIV?
Tell Ontario’s Attorney General to stop unjust HIV-related prosecutions.
Please click here to send a message to the attention of the Attorney General of Ontario, the Honourable Yasir Naqvi.



** UPDATE re surplus in the Trust Fund for the 1986-1990 Hepatitis C Settlement Agreement

Important notice concerning the surplus in the 1986-1990 Hepatitis C Settlement Agreement: first payments expected in February.

For more information, please 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




“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