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Ht Spring 07 Hem philia Canadian Hemophilia Society TODAYServing the Bleeding Disorders Community SPRING 2007 www.hemophilia.ca VOL 42 NO 1 YOUTH FILE OPENED page 13 RESEARCH TWINNING WITH TUNISIA page 23 SUMMIT page 5 OUR STORIES page 14 GLOBAL PERSPECTIVE • MEDICAL NEWS • CHAPTER SPOTLIGHT • OUR STORIES • THE BLOOD FACTOR 2 HEMOPHILIA TODAY SPRING 2007 Hem philia Canadian Hemophilia Society TODAYServing the Bleeding Disorders Community Spring 2007 • VOL 42 • NO 1 Hemophilia Today 625 President Kennedy Avenue, Suite 505 Montreal, Quebec H3A 1K2 www.hemophilia.ca Phone: 514 848-0503 Fax: 514 848-9661 Toll-free: 1 800 668-2686 [email protected] We would like to thank the following companies, corporate foundations and employee fund programs for their generous support.Our way of recognizing them Hemophilia Today is the official publication of the Canadian Hemophilia Society (CHS) and appears three times yearly. for their generosity is through our National Corporate Giving Program. The Canadian Hemophilia Society strives to improve the health and quality of life for all people with inherited bleeding disorders and to find a cure. Its vision is a world free from the pain and suffering of inherited bleeding disorders. The purpose of Hemophilia Today is to inform the hemophilia and bleeding disorders community about current news and relevant issues. Publications and speakers may freely use the information contained herein, provided a PLATINUM credit line including the volume number of the issue is given. Opinions expressed are those of the writers and do not BAYER necessarily reflect the views of the CHS. The CHS consults medical professionals before distributing any medical information. However, the CHS does not practice medicine and in no circumstances recommends GOLD particular treatments for specific individuals. In all cases, it is recommended that individuals consult a physician before BAXTER pursuing any course of treatment. Brand names of treatment products are provided for CSL BEHRING information only. They are not an endorsement of a particular product or company by the writers or editors. NOVO NORDISK WYETH EDITOR François Laroche SILVER PRESIDENT DEWDNEY FAMILY CHARITABLE FOUNDATION Eric Stolte EDITORIAL COMMITTEE BRONZE Hélène Bourgaize DELTA HOTEL WINNIPEG Clare Cecchini François Laroche DELUCA’S SPECIALTY FOODS David Page Chantal Raymond EDELSTEIN DIVERSIFIED CO. LTD. Patricia Stewart FONDATION DE BIENFAISANCE T.A. GERMAIN (LA) CONTRIBUTING WRITERS JOHN BROUWER FOUNDATION (THE) Sarah Bradshaw JOHN DEERE FOUNDATION OF CANADA Clare Cecchini Dianna Cunning LILLIAN AND DON WRIGHT FOUNDATION (THE) François Laroche David Page MANITOBA LIQUOR CONTROL COMMISSION Andrea Pritchard, RN, PhD(c) PRICEWATERHOUSE COOPERS Jeff Rice Nisa Renault, BSc, PhD(c) SCHERING CANADA Eric Stolte SCOTIABANK Emil Wijnker TORONTO STAR FRESH AIR FUND PRODUCTION COORDINATOR David Page THE WINNIPEG FREE PRESS PRODUCTION ASSISTANT AND FRENCH VERSION COORDINATOR Chantal Raymond GRAPHIC DESIGN We would also like to thank our numerous additional donors – individuals, Paul Rosenbaum corporations and foundations – who each year express their confidence in us by making substantial supporting donations. TRANSLATORS Roy Keys Line Ladouceur Working together with the corporate sector in Canada helps the Canadian Marie Préfontaine Hemophilia Society (CHS) accomplish its mission and vision by extending our reach and reinforcing our messages. This enables us to… ▪ Offer national programs of training, education and awareness. ▪ Support research into hemophilia and other bleeding disorders. ▪ Produce educational publications, periodicals (such as Hemophilia Today) and keep our Web site www.hemophilia.ca up to date. ▪ Interact with stakeholders in the health care field to promote the www.hemophilia.ca well being of all our families. HEMOPHILIA TODAY editorial pages SPRING 2007 3 IN THIS ISSUE WORD SPRING 2007 VOL 42 FROM THE François Laroche NO 1 EDITOR WORD FROM THE EDITOR ............................3 PRESIDENT’S MESSAGE ................................4 ou’ve probably heard it said that it’s easier to reach the top than to stay there. COMMUNITY NEWS Y This is often true, at least in professional sport. Some teams are winners thanks to CHS Research Summit: an alignment of the stars that brings them luck, helping them garner top honours Charting the way forward................................5 one year, only to become nothing more than a good team the next year, barely able CHS approves funding for 7 research to qualify for the playoffs. It’s also like this for our organization. projects in 2007 ..........................................6 Over the past 50 years or more, through the hard work of volunteers and dedi- Notice of Settlement: Pre-86/Post-90 Hepatitis C ..........................7 cated health care providers, the CHS has managed to create a state-of-the-art care What’s new on the CHS Web site? ..................8 system for the treatment of hemophilia and other bleeding disorders. Thanks to the unrelenting work of a handful of these stalwarts, we have access to the highest qual- Rendez-vous Québec ......................................9 ity care that is the envy of people with bleeding disorders all over the world. For all Chapter spotlight ..........................................9 practical purposes, we have reached the top. Upcoming events ........................................12 In the coming years, however, we will face a big challenge. Now that we’ve reached the top, we have to stay there. And a number of signs I’ve picked up here YOUTH FILE................................................13 and there as the country’s blood system is being reformed tell me that it’s going to OUR STORIES ............................................14 be a tough fight. MEDICAL NEWS In Quebec, the process of decentralizing budgets for blood and blood products Hep C press review......................................15 from Héma-Québec to designated hospitals already poses a threat to the integrity of Exploring rural health professionals’ needs in our care. Of course, the main advantage of this new approach is that it makes hos- providing hemophilia care ..............................16 pitals more accountable when using blood and blood products—which were being supplied to them for free—as opposed to substitutes—for which they have had to THE BLOOD FACTOR pay until now. Shifting the budgets to hospitals does, however, bring with it a num- Letter on Hemophilia Inhibitor Genetics Study ..18 ber of real or possible drawbacks for people with bleeding disorders. First of all, it Blood factor news ........................................18 creates an additional line item—and a major one—in hospital budgets. Two line vCJD risk from plasma-derived factor VIII items, actually, since fractionated products are separate from fresh components. “is extremely low but may not be zero”............19 Any hospital administrator with an iota of sense will eventually discover that the Factor VIII and IX concentrates licensed/ cost of fractionated products (including factor concentrates) is very high, and try to distributed in Canada....................................20 cut back—to the detriment of users of these products. The decentralization will THE FEMALE FACTOR also create a rift between the prescriber of the products—who practices in the hemophilia treatment centre (HTC)—and the distributor—who works in the hos- Symptomatic carriers: Can women and girls really express hemophilia? ............................22 pital or is located at the regional blood bank. It would obviously be tempting for doctors in remote regions to control prescriptions for products that are budgeted THE GLOBAL PERSPECTIVE and distributed in their hospitals, with the inevitable consequences: improperly pre- Quebec Chapter – Tunisia twinning visit ..........23 scribed drugs, budget overruns, and eventually, loss of the expertise currently exist- ing in the HTCs. But another threat also lurks… Now that factor concentrates produced by genet- ic engineering no longer contain human biological products (2nd generation prod- ucts, like Kogenate® FS and Niastate® contain albumin in trace amounts, while 3rd generation products like Advate® and Benefix® contain none), it would be tempting for provincial health officials to reclassify them as pharmaceutical products. As a result, these would no longer be paid for from the blood products budget, but would be covered by the users’ public, group or private insurance plans—with all the exasperation that would entail for someone with a chronic condition like hemo- philia. The possibility of discontinuing tracking of 3rd generation products was recently brought before the Comité d’hémovigilance du Québec. After the CHS’s position was presented and discussed, the idea of discontinuing product tracking was set aside for the time being. But it is only a matter of time before it’s back on the table, either in Quebec or somewhere else in Canada. We must remain vigilant if we don’t want the quality care for which we’ve fought these many years to gradually wither away. We certainly don’t want to return Steve and Mike Myers, p.14 to the dark ages of the 1950s. 4 HEMOPHILIA TODAY editorial pages SPRING 2007 Dear readers, PRESIDENT’S In the course of our subscription address update for Hemophilia MESSAGE Today, we were pleased and touched by the many appreciative ERIC STOLTE comments you took the time to send us. Below are some of the messages received. In addition to your written words, many of Dream
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