SUMMARY NOTES NATIONAL LIAISON COMMITTEE TUESDAY SEPTEMBER 29, :30 a.m. to 12:00 p.m. Novotel Hotel, Morning Light Room

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1 CHAIRS: Ms. Leah Hollins Dr. Kevin Glasgow Mr. Robert Teskey SUMMARY NOTES Chair, Board of Directors Consumer Representative, Board of Directors Consumer Representative, Board of Directors PRESENT: Mr. John Andruschak Ms. Heather Mingo Ms. Josie Sirna Mr. Dan Doran Mr. John Thomas Mr. Willy Van Klooster Ms. Ashley Oakes Mr. Babatunde Ajayi Mr. Steve Raper Dr. Tom Alloway Mr. David Page Ms. Stephanie Perilli Ms. Whitney Goulstone Ms. Carole Ann LaGrange Mr. Richard Thompson Mr. Pierre Cyr Mr. Jean-Paul Bedard Ms. Stephanie Kelly Mr. Chris Brennan Ms. Amanda Cullen Mr. Don Lapierre Ms. Cassandra Tavares Ms. Lise Simpson Mr. Patrick Heney Mr. Peter Saunders HealthCareCAN Physicians and Nurses for Blood Conservation / SABM Thalassemia Foundation of Canada Regional Liaison Committee, Atlantic Regional Liaison Committee, ManNEON Regional Liaison Committee, Southern and Central Ontario Aplastic Anemia and Myelodysplasia Association of Canada Sickle Cell Disease Association of Canada Regional Liaison Committee, BC & Yukon Canadian Hemophilia Society Canadian Hemophilia Society Regional Liaison Committee, Alberta and Saskatchewan Canadian Immunodeficiencies Patient Organization Canadian Society for Transfusion Medicine Immunodeficiency Canada Director, Board Relations, Canadian Blood Services Vice President, Public Affairs, Canadian Blood Services Sr. Manager, Stakeholder Relations, Canadian Blood Services Manager, Stakeholder Relations, Canadian Blood Services Manager, Government Relations, Canadian Blood Services Manager, Stakeholder Relations, Canadian Blood Services Senior Board Administrator, Canadian Blood Services Director, Strategy and Corporate Affairs, Canadian Blood Services Manager, Strategic Finance, Canadian Blood Services Director, National Operations, Canadian Blood Services EXECUTIVE MANAGEMENT TEAM: Dr. Graham Sher Mr. Ian Mumford Mr. Rick Prinzen Dr. Dana Devine Chief Executive Officer, Canadian Blood Services Chief Supply Chain Officer, Canadian Blood Services Incoming Chief Supply Chain, Canadian Blood Services Chief Medical and Scientific Officer, Canadian Blood Services Page 1 of 7

2 BOARD OF DIRECTORS: Dr. Jeff Scott Mr. Wayne Gladstone Dr. Gary Glavin Mr. Henry Pankratz Ms. Elaine Sibson Ms. Suromitra Sanatani Mr. Dunbar Russel Mr. Craig Knight Mr. Michael Shaw REGRETS: Mr. Peter Ferreira Mr. Francois Perron Ms. Aida Fernandes Ms. Kelly Butt Canadian Ethnocultural Council Canadian Society of Clinical Perfusion Crohn s and Colitis Canada WELCOME AND INTRODUCTIONS Leah Hollins welcomed participants and members and thanked them for the work they do. Roundtable introductions followed. REPORT OF THE CO-CHAIRS Dr. Kevin Glasgow provided a brief reflection on the events and conversations that occurred on day the previous day s meeting. STANDING COMMITTEE REPORT Chris Brennan presented the results of the annual committee satisfaction survey, and provided an overview of the activities and priorities the committee has been focused on in the past year. The follow-up conversation included a broader discussion of the membership recruitment underway by the Regional Liaison Committees, as well as feedback from the committee co-chairs. CANADIAN BLOOD SERVICES PLASMA STRATEGY Dr. Graham Sher provided an overview of the Plasma strategy at Canadian Blood Services, and an examination of the drivers behind the increased worldwide demand for plasma. The impact of the value of the Canadian dollar as well as the implications of a paid vs. unpaid plasma donor base was also discussed. Page 2 of 7

3 Dr. Sher then hosted a group discussion to delve more deeply into the plasma industry; he included insights into the factors driving worldwide demand for plasma vs. red blood cells and what is being done in both cases; various international collections models; and the state of research into alternate solutions. A comprehensive consultation followed on the three discussion themes: 1) Aside from the business implications, what challenges do you see from a patient/recipient perspective? 2) What do you consider to be the key drivers behind expanding our plasma program? 3) What are your thoughts on the paid vs. unpaid plasma donation models? Key themes emerging from the consultation are as follows: Question 1: Aside from the business implications, what challenges do you see from a patient/recipient perspective? Concern around patient access to treatments as demand increases Brand preference is often related to adverse reactions, consider the implications of limited choice/access Striking the balance between cost and quality Education and general awareness about what plasma is how it is collected and what it used for is lacking. An educational component must be a focus. Question 2: What do you consider to be the key drivers behind expanding our plasma program? Patient need must remain a central driver Managing costs without impacting patient ability to access treatments Effective stewardship must include a role in good governance and oversight. Influencing clinical practice and utilization. Self-sufficiency reduces over-reliance on US market, and helps mitigate security of supply risk Question 3: What are your thoughts on the paid vs. unpaid plasma donation models? Patient groups have no safety concerns with paid model; there is 25 years of evidence supporting this. Comfortable with Canadian Blood Services safety assessment Clarity in messaging will be important to combat misinformation, and responses based on emotion over science There is a threat to public trust here which needs to be carefully managed The full consultation report was shared with the project team considering the development of the strategy. Page 3 of 7

4 MEMBER ISSUES FOR THE BOARD Leah Hollins noted that one of the most important aspects of each this meeting is the opportunity for direct interaction between the board of directors and national liaison committee members on key strategic issues. She opened the floor to anyone wishing to raise an issue. Issues were raised by: Josie Sirna: Despite universal leukodepletion, many chronically transfused patients such as thalassemia patients have had allergic reactions such as hives. According to Canadian standards and advice, one method of minimizing allergic reactions in the multiply transfused is to wash red blood cell units prior to transfusion. The "old" blood washing process using the "donor" blood unit bags resulted in average unit sizes of approx. 230cc/unit. The "new" blood washing process, done in Brampton, result in units maintaining their original volume of approx. 330cc/unit. There is discordance in unit size when units are washed via the new method. This volume change has not been adjusted at the bedside resulting in blood orders remaining unchanged although the new washing process provides a significant increase in volume. Patients are noticing the difference. A 60 kg patient previously receiving 4 units of "old method" washed blood to obtain approximately 900cc of washed red blood cells now receives 4 units of "new method" washed blood resulting in an increased volume per transfusion of 420cc, or 50% increase in volume, per month. Graham Sher responds: Reporting is not as timely and stringent in post-change surveillance as it should be in Canada. One of the things Canadian Blood Services is implementing as part of its refreshed quality management system is a formal customer complaint system where clinicians can report any adverse events observed in practice. This will allow Canadian Blood Services to monitor events more formally and take necessary steps. Action: Canadian Blood Services to follow-up regarding cell washing practices in new Brampton facility Dr. Tom Alloway: On behalf of the Canadian Hemophilia Society, there are significant new developments in drug treatments that offer tremendous quality of life improvements for patients. We hope that Canadian Blood Services will work with its funders and Health Canada to make these products available in the same way that current products are available. When a treating hematologist and his patient believe a product is the best option, it should be available. David Page reiterated that this is a significant issue for them. For the first time, the provincial and territorial blood liaison committee is involving itself in medical decision-making by setting criteria for product use. This has become a difficult and frustrating process. Page 4 of 7

5 Response: We agree and do see the benefits of these new products. We have gotten to the point where we do have approval for this category of long-lasting products. This took longer than any of us had hoped, but now that the category has been approved it should help. We are in the midst of conversations to move this approval the rest of the way, and hope it will be positively resolved in the very near future. Action: Follow-up with Carole Ann LaGrange to clarify the question she wanted to put to the Board. Steve Raper (BC & Yukon regional liaison committee co-chair): Coming from a community where there is no longer a Canadian Blood Services footprint, I m flagging a challenge in finding ways that those of us who advocate on the organization s behalf can continue to contribute. In light of the changes we re in the midst of making to Regional Liaison Committees (increasing focus on building a network of members to support recruitment), there needs to be a way to connect back to the other non-blood business lines at Canadian Blood Services. Otherwise we risk losing support in these broad but under-served geographic regions. Dan Doran (Atlantic regional liaison committee co-chair): Echo Steve s concerns about the confusion and angst among regional advocates, and how we respond and offer solutions. There is efficiency vs. an emotional commitment issue. On another note, there is a growing issue around the strike action happening in Prince Edward Island and the potential for an erosion of goodwill, especially given the potential perception that this is a David vs. Goliath situation. This is contained locally now, but could go national and not be a positive thing for the organization. Action: Heather Mingo invited Canadian Blood Services to establish stronger ties with the Society for the Advancement of Blood Management. Public Affairs will follow-up with Heather to initiate preliminary conversation. Leah Hollins thanked the members for their participation and ongoing service to the national liaison committee and the organization. She also thanked Ian Mumford for his many years of service, and for the great contribution he made in developing and launching the national and regional liaison committees. Meeting adjourned at 12:00pm. Page 5 of 7

6 Appendix Presentation Q&A Canadian Blood Services Plasma Strategy Dr. Graham Sher Q: Can you give us a sense of what the price point is in jurisdictions where they do pay their donors? A: It s typically around a $25 or $30 fee or reimbursement. It s really a nominal number. Q: How often can one donate (plasma)? A: Up to twice a week, 24 times per year at a maximum Q: Do you foresee a time when we will need less, or demand will lessen for Albumen or Immunoglobulin (Ig) products? A: Albumen is the great unknown, it is very cyclical. It is very much driven by the Asian market now; they take a very different clinical approach than we do in the West. Ig is a very different story, at least in Canada. There are only a handful of licensed indications for Immune disorders. Those indications require Ig for life-threatening disorders. The products have also demonstrated clinical benefits in many neurological conditions; the products are not licensed for that, though physicians do use it appropriately. Then there is a long list of other conditions for which there is no good scientific evidence for which the drug should be used, and yet the drug is prescribed. That s the problem with immunoglobulin products. That is to some extent what is driving the increasing demand for these products. Q: The medical community has done a good job in identifying ways to cut back on red cell usage. Why can t the same effort be put into regulating the use of Ig? A: We have made efforts in this county to drive down the use of Ig. And we can show a number of successful campaigns in specific regions. Unfortunately, as soon as controls were loosened, or oversight moved on, demand skyrocketed again. The use of Ig is more diffuse than red blood cells, and it is much more difficult to enforce. Q: Is there a potential for synthetic products to replace these products? A: There is lots of research being done; this is not something that will happen anytime soon. Q: Have we done any research on the impact of switching donors from whole blood to apheresis programs? A: We have focused all our efforts on the whole blood donor basis since our creation. We have not invested heavily in this notion of large scale apheresis collections. The Australians for example collect more red cells than they need, with the intention of retrieving more plasma. It s a very different approach. Their economics are different than ours, though we are working with them and studying how they do things. Q: Could you give us some insight into what Héma-Quebec is doing in this regard? A: Héma-Quebec has created a separate entity that will open multiple collection points throughout the province. They will collect in a very different way than they collect whole blood, different hours, different staffing models etc. All recruitment will be done in the local mobile clinics and they will hand-pick the donors they want to participate in Page 6 of 7

7 their plasma program. No incentives are being provided to donors. But staff is becoming very active and involved in the community building relationships. Q: Is there a benefit in having these products made from a limited number of producers, or would a broader base be better? A: We will always be limited by the number of licensed fractionators in Canada, and currently there are only two. Likewise, we can t even purchase product from a company not licensed in Canada. We did lobby to have a second fractionator licensed some time ago to help with security of supply. There just aren t that many players out there, so it will always be a limited pool. Having said that, there is security in having options. Q: How will expanding the number of fractionators contribute to an increase in supply? A: Fractionators are not in the business of collecting plasma. They take plasma and process it into these specific products. We welcome a second option to ensure security of supply should one of those fractionators have to shut down for some reason. Other entities like Canadian Plasma Resources are collectors of plasma, not processors. At the moment none of the fractionators have indicated they want to come into Canada to collect plasma directly from our donors. Page 7 of 7