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The Canadian Hemophilia Society (CHS) Draft Policy on Paid Plasma Donations was approved by the CHS Blood Safety and Supply Committee on March 11, 2013, and is an addition to the complete CHS Policy on Blood, Blood Products and their Alternatives  adopted in 2002 and reviewed annually. The CHS invites questions and comments  from stakeholders (chs@hemophilia.ca). A final draft will be proposed to the CHS Board of Directors for adoption on May 25, 2013.

Draft policy
Background document
Summary


Other links:

CHS Policy on Blood, Blood Products and their Alternatives

2011 Dublin Consensus

Click here to get the perspective of Canadian Blood Services.

Health Canada Fact Sheet on Plasma Donation in Canada

Resolution of the WFH General Assembly on the Supply of Safe High-Quality Clotting Factor Concentrates

An international study of risk factors for inhibitors in children with severe hemophilia A appears to have identified a difference in inhibitor rates between different types of clotting factor concentrates.An increased risk of inhibitor development was observed in previously untreated patients (PUPs) using a second generation recombinant product as compared to a third generation recombinant product.

The researchers are calling for further evaluation and confirmation in a second study. Click here to read full statement.

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 three charts, one each for factor VIII, factor IX and for inhibitor products, to help everyone stay informed of their progress through preclinical work, clinical trials and regulatory approval.

Click here for more details.

Thank you to all those who have already participated in the CHS survey on novel factor VIII and IX products that may be introduced in the next few years. The response from people with hemophilia A was impressive! The information and insights you provided help us to understand patient preferences. We will use this information to advocate for different treatment options. People with hemophilia A who have not yet participated, it is not too late.

We really need more responses from people with hemophilia B. Factor IX products may be first on the market. We would greatly appreciate you completing the questionnaire. Your answers will remain confidential.

Please note that the CHS is conducting this survey with the help of HealthPulse, a market research company. At the end of the survey, you are required to provide your name and contact information to HealthPulse. This is so that 1) HealthPulse can follow up with you for clarification, if necessary; and 2) HealthPulse can contact you to invite you to participate in future market research of its own or in collaboration with the CHS. Your personal information remains confidential at all times and will not be shared with others.

Please click here to access the survey. Thank you!

A webcast of coderouge 2012: the 1st Canadian Conference on Bleeding Disorders in Women that took place May 25, 2012 in Toronto is now available.

To view the webcast please click here

A group of British hemophiliacs are lobbying for a full public inquiry into the tainted blood tragedy of the 1970s and 1980s in the U.K., and are requesting adequate compensation. They have produced a video on YouTube to document the lives of some victims of the contaminated blood disaster in the UK. It includes quotes from those affected, medical personnel working in the phamaceutical industry and government officials. It's around 20 minutes - set to music, with pictures of all those who took part in the project.

Tainted Blood - Betrayal and Lies

To learn more about their efforts, this committee of volunteers also have a Web site:
www.taintedblood.info

Survivor benefits for spouses and children of long-term survivors covered by the Multi-Provincial Territorial Assistance Program (MPTAP)

• Were you directly infected with HIV through the blood system?
• Are you covered under the MPTAP compensation plan?
• Did you marry or have children since September 15, 1993?

If you answered “yes” to these questions we need to hear from you.

IF YOU SIGNED THE MPTAP AGREEMENT AND HAVE SUBSEQUENTLY MARRIED, YOUR NEW SPOUSE OR ANY CHILDREN BORN ARE NOT ENTITLED TO SURVIVOR BENEFITS!

IF THIS APPLIES TO YOU, WE WANT TO HELP. WE WOULD LIKE TO FIND OUT HOW MANY OF OUR MEMBERS ARE IN THIS SITUATION.

The CHS is prepared to lobby provincial and territorial Health Ministers with a view to extending survivor benefits to all spouses and children of directly infected long-term survivors covered by the MPTAP, including those spouses and children who became part of the claimants’ lives after the time of applying and being accepted under the plan. We are also looking for individuals who are prepared to join the working group and help bring this to fruition.

For more information please click here or contact Michel Long at mlong@hemophilia.ca or 1-800-668-2686.

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.