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Eloctate and Alprolix now available

OTTAWA, February 3, 2016 – Canadian Blood Services (CBS) announced that extended half-life factor concentrates, Eloctate® to treat hemophilia A, and Alprolix™ to treat hemophilia B, have been approved for reimbursement and are now distributed through CBS in all provinces and territories (except Quebec). Both products are manufactured by Biogen.

The decision comes 22 months after approval of Alprolix by Health Canada in March 2014 and 16 months after approval of Eloctate in August 2014 and lengthy reviews involving the National Advisory Committee on Blood and Blood Products (NAC) and the Canadian Agency for Drugs and Technologies in Health (CADTH).

“We are really happy to finally see the introduction of Eloctate and Alprolix for Canadian patients,” said CHS President, Craig Upshaw. “They represent the first in a new class of extended half-life factor concentrates.”

According to access criteria developed by NAC, Eloctate and Alprolix will be available to patients with moderate or severe hemophilia A or B, 12 years of age and older, who meet one or more of the following criteria:

  • are currently on a prophylaxis regimen;
  • have frequent bleeding episodes while on their current on-demand or prophylactic regimens;
  • have venous access difficulties and could avoid use of a central venous access device with these potentially lower-frequency products;
  • have shorter than normal half-lives;
  • could improve adherence to a prophylactic regimen because of the lower frequency of infusions needed; or
  • would experience improved quality of life.

Based on physician recommendation, other access criteria could be considered.
For the original list of access criteria, see the NAC website at www.nacblood.ca and select “Criteria for Use - Alprolix and Eloctate.”

Meanwhile, the Quebec access criteria put in place in April 2015 remain much more restrictive. They include:
  1. shorter than normal half-life;
  2. venous access difficulties; and
  3. other justifiable reasons, as determined by the treating physician and subsequently approved.

The CHS and its Quebec Chapter are working to broaden criteria #3 to include some of the criteria identified by NAC for the rest of Canada.

National Family Inhibitor Workshop - May 13-15, 2016

The CHS is organizing the 6th National Family Inhibitor Workshop to take place May 13-15, 2016 in Toronto.

The workshop provides an opportunity for parents to gain new knowledge from medical experts about treatment options and the management of inhibitors and to share their experiences in coping as families. And, for the children and adolescents, it will be a chance to meet other kids with inhibitors, learn about hemophilia and have fun.

If you are interested in attending, please contact your clinic nurse or the CHS national office (1-800-668-2686) for more information.

2016-2020 CHS Strategic Plan

BMC releases principles for pharmaceutical reform

The Best Medicines Coalition (BMC), a national alliance of patient groups of which the CHS is proud to be a member, released its Equitable Pharmaceutical Care: Principles and Considerations Regarding Pharmacare in parallel of the Federal/Provincial/Territorial Health Ministers Meeting that took place on January 20-21 in Vancouver. The six key principles are universality, national scope, broad inclusivity, therapeutic options, timely access, and collaboration.

The Principles reflect the shared vision of BMC's 23 member organizations which represent a large cross-section of the Canadian patient community, including arthritis, gastrointestinal disease, HIV/AIDS, cancer and others. The Principles have been provided to all Health Ministers to support the BMC's call for making pharmaceutical reform a priority and to ensure that patient voices are heard.

Note that some bleeding disorder drugs are not covered through the Canadian Blood Services and Héma Québec budgets, notably desmopressin and tranexamic acid. In addition, some very promising new therapies (e.g. the bi-specific antibody, ACE910) do not resemble natural FVIII or IX in any way and it is not clear whether or not they will be included in the CBS/H-Q system. So the issue of pharmacare is a real one for CHS and may become even more critical in the future.


Recipients of the Karttik Shah Youth Fellowship

Congratulations to our two winners who will attend the 2016 WFH World Congress: Kwadwo (Michael) Bosompra from Ontario and Jeffrey Snow from Newfoundland and Labrador.

Keep an eye open for their post-congress report which will be published in Hemophilia Today.

Products in the pipeline - NEW UPDATE (December 21, 2015)

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 five charts, one each for factor VIII, factor IX, inhibitor products, other coagulation products, and one for factor VIII, IX and other rare bleeding disorders together, to help everyone stay informed of their progress through preclinical work, clinical trials and regulatory approval.

Click here for more details.

SIPPET study results on inhibitor risk released

The CHS Blood Safety and Supply Committee is closely monitoring developments following release of some results of the SIPPET study (Survey of Inhibitors in Plasma-Products Exposed Toddlers) comparing inhibitor risk between plasma-derived and recombinant factor VIII.

Below is a statement from the World Federation of Hemophilia:

November 11, 2015 – Some results of the SIPPET (Survey of Inhibitors in Plasma-Products Exposed Toddlers) study were published last week as a conference abstract in advance of the American Society of Hematology (ASH) Annual Meeting this December. The abstract suggests that, in previously untreated patients, the risk of developing an inhibitor when using recombinant factors is significantly higher than when using plasma-derived factor concentrates. This is an important study and the results may prove to be significant.

The WFH will make further comments after the publication of the complete study in a peer-reviewed journal. The abstract can be viewed here.

Hemophilia Today - November 2015

UPDATED CHS resource about HCV treatment support for 1986-1990 claimants

Accessing treatments for hepatitis C through the Hepatitis C January 1, 1986 — July 1, 1990 Class Actions Settlement: What you need to know

If you are a patient who received tainted blood or blood products and a registered claimant of the Hepatitis C (HCV) 1986-1990 Class Actions Settlement, now is a good time to speak to your doctor about new treatments for HCV. Treatment has progressed significantly, and it may be the right time for you to seek a cure.

People who are approved claimants under the Hepatitis C January 1, 1986 — July 1, 1990 Class Actions Settlement may be reimbursed for their costs for treatments and generally accepted hepatitis C medications that are not recoverable under any public or private health care plan. Many companies that make and sell hepatitis C medications have programs to support patients throughout treatment.These programs offer assistance by providing drugs upfront to the 86-90 claimants through their specialty pharmacy. Once the 86-90 plan issues the reimbursement cheques to the patients for their treatment, they, in turn, must reimburse the pharmacy directly.

Because this is not well known by the claimants themselves nor their health care providers, the CHS has developed a new resource to provide more information. Note that the resource was recently updated to include new and additional patient support programs.

Please click here for more information and access to the new brochure.

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)

A bandage is not enough.


Click here for more information about this important public awareness and outreach campaign or to download promotional material.

E-novella spreading the word on bleeding disorders on Wattpad

One in 100 Canadians carries an inherited bleeding disorder gene, yet so many remain undiagnosed. In an effort to educate a younger audience about the symptoms and risks of bleeding disorders, we’ve developed an e-novella – entitled ‘A Negative’ – to spread the word in an engaging and memorable way.

Playing off the popular Harlequin romance genre, ‘A Negative’ tells the story of a young woman unknowingly living with von Willebrand disease. We’ve published the e-novella on Wattpad – the world’s largest online community of writers and readers – in order to connect with young women across Canada. This unique approach introduces the issue into a different medium, enabling us to speak to and educate an engaged but unsuspecting audience.

CLICK HERE for the press release.

CLICK HERE to read 'A Negative'.

You and your family depend on research...

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