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Xyntha now available across Canada
Pfizer, which recently purchased Wyeth, announced late in November that Xyntha™, Antihemophilic Factor (Recombinant) [BDDrFVIII], Plasma/Albumin-free, is now available through Canadian Blood Services (CBS). Xyntha was approved for distribution by Héma-Québec several months ago.
Xyntha is approved for the control and prevention of bleeding and for routine and surgical prophylaxis in patients with hemophilia A (factor VIII deficiency).
In a communiqué, Canadian Blood Services stated, “A maximum volume of three million international units (IU) of Xyntha™ will be available (outside of the province of Quebec) for patients who could potentially benefit from treatment with Xyntha. This volume will be reviewed on an annual basis and any changes will be communicated by Canadian Blood Services. A reporting mechanism between Canadian Blood Services and the hemophilia treatment clinics is being implemented to track the volume of Xyntha being ordered, given the quantity of product being made available.”
The quantity of three million units represents approximately 2.5 percent of the recombinant factor VIII distributed by CBS annually.
Xyntha becomes the fourth recombinant factor VIII concentrate, along with Advate™, Helixate™ FS and Kogenate™ FS, currently available in Canada.
For more information on Xyntha, see the Winter 2009 issue of Hemophilia Today, Vol 44 No 1. To obtain the product monograph, see www.wyeth.ca.

Our Stories Contest

Win a trip to Buenos Aires to attend the XXIX International Congress
of the World Federation of Hemophilia!
of the World Federation of Hemophilia!

Everybody has a story… Let’s hear yours!
Be selected as one of Our Stories for our newsmagazine Hemophilia Today and our Web site and you could win a trip to Buenos Aires to attend the XXIX International Congress of the World Federation of Hemophilia, July 7-10, 2010.
For all the details, please contact us at chs@hemophilia.ca or 1 800 668-2686 or click below for the contest rules.
Contest rules

2010 Karttik Shah Youth Fellowship

The CHS Karttik Shah Youth Fellowship was initiated in memory of Karttik Shah of Toronto, Ontario, in recognition of his commitment to hemophilia youth programming and, in particular, for his participation over many years on the CHS Board of Directors and the WFH Youth Committee. In order to promote the development of future leaders in the Society, the CHS will offer two fellowships to enable Canadian youth who are committed to long-term involvement with the CHS to attend the 2010 Hemophilia World Congress taking place in Buenos Aires, Argentina, July 10 - 14, 2010. The fellowship programme is open to Canadian youths between the ages of 18 and 30 affected with hemophilia, other rare factor deficiencies, von Willebrand disease, and carriers.
Interested youth should complete the application form and forward it, along with the relevant documentation to the CHS by January 29, 2010.
For more information, please click here.

Opportunities to participate in research
Seeking Canadian men living with severe hemophilia to participate in online focus groups.
A research study led by the McMaster Transfusion Research Program at McMaster University is looking for men with severe hemophilia to participate in online focus groups to be held in the new year (2010). Home management of hemophilia requires that people with hemophilia have knowledge about the disease and its treatment. The goal of this study is to identify what kinds of knowledge and information individuals living with severe hemophilia need to have to manage the disease for the best possible outcomes.
To read more...

Obama Says U.S. to Lift Ban on HIV-Positive Travelers
U.S President Barack Obama said the U.S. will eliminate a 22-year-old ban on foreign nationals with HIV entering the country, saying it will be a step toward removing the stigma from the disease and encourage testing.
“If we want to be the global leader in combating HIV/AIDS we need to act like it.” The Department of Health and Human Services has published new rules on Nov. 2, to take effect Jan. 4, 2010.
The lifting of the travel ban was initiated last year by Congress when it approved legislation funding HIV/AIDS treatment and prevention programs sought by then-President George W. Bush.
Obama made the announcement as he signed the Ryan White HIV/AIDS Treatment Extension Act of 2009, reauthorizing a federal program that provides HIV-related healthcare.
This legislation is named after a teenager who had hemophilia and was diagnosed with AIDS in 1984 when he was 13 years old. He was infected through of a blood transfusion. Ryan died on April 8, 1990, at 18 years old.
Source: Kate Andersen Brower, Bloomberg, Oct. 30, 2009.
To read the full story, please click here.
“If we want to be the global leader in combating HIV/AIDS we need to act like it.” The Department of Health and Human Services has published new rules on Nov. 2, to take effect Jan. 4, 2010.
The lifting of the travel ban was initiated last year by Congress when it approved legislation funding HIV/AIDS treatment and prevention programs sought by then-President George W. Bush.
Obama made the announcement as he signed the Ryan White HIV/AIDS Treatment Extension Act of 2009, reauthorizing a federal program that provides HIV-related healthcare.
This legislation is named after a teenager who had hemophilia and was diagnosed with AIDS in 1984 when he was 13 years old. He was infected through of a blood transfusion. Ryan died on April 8, 1990, at 18 years old.
Source: Kate Andersen Brower, Bloomberg, Oct. 30, 2009.
To read the full story, please click here.

THE CHS MOVED!
The CHS national office in Montreal is now located at:
400-1255 University St.
Montreal, Quebec H3B 3B6
Phone and fax numbers remain the same.
400-1255 University St.
Montreal, Quebec H3B 3B6
Phone and fax numbers remain the same.

Blood safety case begins in Ottawa - CHS has intervener status
OTTAWA – September 28, 2009 – The civil case of Freeman vs. Canadian Blood Services (CBS) and Health Canada began in Ontario Superior Court today and will last until mid-December. The Canadian Hemophilia Society has been granted intervener status so as to represent recipients of blood and blood products, and is represented by Tough and Podrebarac LLP.
Click here to read more.
Click here to read more.

Canadian HTCs recommend people with bleeding disorders follow Public Health recommendations on H1N1 vaccination
Canadian hemophilia treatment centres (HTCs) are recommending to their patients that they follow their province's Public Health recommendations on H1N1 vaccination. Administration of factor therapy is not necessary before vaccination.
Some questionnaires completed before vaccination include a question on whether or not the person has a bleeding disorder. Be sure to answer 'yes' if this is the case. This will allow personnel to take extra precautions to avoid bleeding after the vaccination. These include:
Contact your HTC if you have questions.
Some questionnaires completed before vaccination include a question on whether or not the person has a bleeding disorder. Be sure to answer 'yes' if this is the case. This will allow personnel to take extra precautions to avoid bleeding after the vaccination. These include:
- using the smallest needle possible (25-gauge 5/8-inch for children, 25-gauge 1-inch for adults).
- injection in deltoid muscle of arm for those over 12 months, injection in thigh for those under 12 months, but never in the buttock.
- inserting the vaccine as slowly as possible to avoid tearing muscle fibres.
- applying pressure (not rubbing) at the vaccination site for 15 minutes after injection to prevent internal bleeding.
Contact your HTC if you have questions.

Active support for Bill C-393 accessible medicines

A bill was introduced in Parliament to improve Canada’s Access to Medicines Regime (CAMR). This bill – C-393 – will help get affordable drugs moving to lower-income countries where they are desperately needed to treat life-threatening infectious diseases. Bill C-393 had its first hour of debate on June 12 and was read a second time and referred to the Standing Committee on Industry, Science and Technology on December 02, 2009.
The next step is to inform the broader public about Bill C-393 and to mobilize support behind the bill leading up to the final vote. This is especially critical to counter the resistance being mounted by the brand-name drug companies who would rather their patents and profits not be shared at all.
The Canadian Hemophilia Society is asking for your active support by using your networks to inform the public about Bill C-393 and to encourage Canadians to sign petitions, fill out mail-back cards or otherwise contact their MPs to voice their support for the bill. To assist you, please find below links to the following materials:
Copy of Bill C-393
Speech of Judy Wasylycia-Leis, MP for Winnipeg North, given in Parliament during the first hour of debate on the bill
A petition that can be copied and distributed for signatures
The template of a mailback slip addressed to Ms. Wasylycia-Leis’ office in Ottawa
Children Can’t Wait! Dying for Drugs in Developing Countries: for more information, visit:
www.aidslaw.ca/camr

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.

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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