AGENDA NATIONAL LIAISON COMMITTEE MONDAY SEPTEMBER 21, :00 a.m. to 4:00 p.m. Albert at Bay Suites 435 Albert St. Ottawa ON

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1 CHAIRS: PRESENT: Ms. Winnie Leung Dr. Michael Mehta Ms. Pam Wishart Mr. Larry Misner Dr. David Allan Ms. Heather Mingo Mr. Vik Bhatija Mr. Bill Mindell Ms. Margie Rogers Mr. John Wittkamp Ms. Amalia Pempengco Ms. Joanne Higgins Mr. Robin Hood Mr. Fred Vecchio Ms. Mary Lye Ms Lorna Warwick Ms. Annie Bédard Ms. Denise Evanovitch Ms. Lorna Stevens Mr. Edward Ferre Dr. Robin Moore-Orr Mr. Michael Whelan Ms. Susan Borwick Mr. Jean-Paul Bédard Ms. Lorna Tessier Ms. Stephanie Kelly Mr. Marc Plante Mr. Dan Doran Canadian Blood Services Board of Directors, (Co- Chair) Canadian Blood Services Board of Directors Aplastic Anemia and Myelodysplasia Association of Canada Bruce Denniston Bone Marrow Society Canadian Blood and Bone Marrow Transplant Group Physicians and Nurses for Blood Conservation Thalassemia Foundation of Canada Canadian Hemophilia Society Regional Liaison Committee Atlantic Regional Liaison Committee Southern Ontario Regional Liaison Committee Prairies Regional Liaison Committee NEON Regional Liaison Committee Alberta Regional Liaison Committee, Central Ontario Childhood Cancer Foundation Candlelighters Canada Leukemia & Lymphoma Society of Canada Canadian Society of Clinical Perfusion Canadian Society for Transfusion Medicine Neutropenia Support Association Inc. Canadian Association of Transplantation Anemia Institute for Research and Education Canadian Immunodeficiencies Patient Organization Canadian Arthritis Patient Alliance Vice President, Public Affairs, Canadian Blood Services National Public Relations Director, Canadian Blood Services Senior Public Relations Manager, Canadian Blood Services Public Relations Coordinator, Canadian Blood Services Incoming Consumer Representative, Canadian Blood Services Board of Directors

2 PRESENTERS: REGRETS: Ms. Sophie de Villers Ms. Jennifer Philippe Mr. Watson Gale Ms. Mary Kim Mr. John Andruchuk Ms. Janene Flath Dr. Sam Krikler Ms. Carole Ann LaGrange Mr. Peter Ferreira Ms. Sahar Jamal Ms. Sue Smith Vice-President, Strategy Management, Canadian Blood Services Director, OneMatch Stem Cell and Marrow Network, Canadian Blood Services Vice-President, General Council & Corporate Secretary, Canadian Blood Services Canadian Arthritis Patient Alliance Canadian Healthcare Association Regional Liaison Committee Alberta Regional Liaison Committee, BC & Y Canadian Society for Transfusion Medicine Canadian Ethnocultural Council Youth Representative Executive Director, OneMatch Stem Cell & Marrow Network OPENING REMARKS Dan Doran was introduced as the new incoming consumer representative for a one year period to complete James Kreppner s term, effective October It was also John Wittkamp s last NLC meeting as the Regional Liaison Committee representative for Southern Ontario, and was presented a certificate of appreciation. Denise Evanovitch was appointed the new NLC representative for the Southern Ontario RLC. The chair welcomed all participants to the meeting and introduced new members: Susan Borwick, representing the Canadian Arthritis Patient Alliance on behalf of Mary Kim Robin Hood, representing the Alberta Regional Liaison Committee on behalf of Janene Flath Denise Evanovitch, representing the Canadian Society of Transfusion Medicine, on behalf of Carole Ann LaGrange Stephanie Kelly, as the new Senior Manager, Public Relations. It was also acknowledged that Michael Whelan, already representing the Canadian Immunodeficiency s Patient Organization, would be representing the BC & Y Regional Liaison Committee on behalf of Dr. Sam Krikler. There was a round table and the members introduced themselves and provided the organization or RLC they represent. REVIEW OF AGENDA The agenda was reviewed and no changes were noted. REVIEW AND APPROVAL OF April 20, 2009 SUMMARY NOTES

3 Correction - Page 2 and 3, Mathias Haun s name is spelled incorrectly. The notes were approved as amended. 1. REMEMBERING JAMES KREPPNER Ms. Lorna Tessier, led the NLC members through some memories of former co-chair James Kreppner, his contributions and dedication to the NLC, Michael Whelan said a few words, talked about James passion and will miss his input into the NLC meetings. Bill Mindell talked about his devotion, how James was the public face of the Canadian Hemophelia Society, and will miss his friendship. Lorna Stevens spoke about how knowledgeable he was and was not afraid to share that knowledge to the NLC Comments were followed by a moment of silence. 2. PUBLIC AFFAIRS STRATEGY Jean-Paul Bédard, Vice President, Public Affairs presented and discussed the public affairs strategy for Canadian Blood Services. External stakeholders were discussed in relationship with short and long term objectives. Part of the subsequent discussion with the NLC focused on including internal stakeholders as part of this strategic plan. Some of the dialogue questioned the completeness of a comprehensive strategic plan that does not include their internal stakeholders. Many of the internal and external stakeholders have very close relationships and work in collaboration in meeting Canadian Blood Services objectives. In addition, concerns were expressed about ensuring that Canadian Blood Services is an employer of choice, plans are put in place to mitigate the impact of the decrease in skilled labour affecting the blood supply and defining internal/external stakeholder linkages in the plan. Canadian Blood Services indicated that the internal and external strategic plans are separate. There was further discussion of ensuring staff do not suffer from change fatigue, because there is a perception that Canadian Blood Services continuously implements changes and restructuring. Questions Q. Do we currently have somebody that s on the Board of Directors at Canadian Blood Services that represents public health? A. Yes, Gary Glavin represents Public Health. Q. Is there a role that the regional stakeholders can play? Key messages they can use? A. Definitely. It is something that needs to be on the RLC agenda s on how you can help leverage all of our agendas. There are certainly times when partners are more effective at delivering messages in some instances. Q. In terms of Canadian Blood Services core business as well as donor retention, there needs to be more of a commitment to safety, especially when talking to elected officials. The Kyle Freeman will be a big Public Affairs issue. A. Rest assured, Canadian Blood Services has developed a comprehensive communications strategy working with various partners. Regarding the first comment, safety is paramount, and will be included in any presentation to elected officials. Q. Canadian Blood Services needs to be more present in dealings with Health Canada by playing a leadership role in shaping healthcare policy.

4 A. We are a well kept secret. We provide national healthcare service, we have expertise, and we can bring that to the table. Canadian Blood Services can certainly be broader than just blood issues. We ve learned a lot over the last 11 years which can help shape policy surrounding our business lines and beyond. Q. In terms of healthcare, perhaps for consumers Canadian Blood Services can be our advocates, in the stewardship of health? A. Canadian Blood Services needs to be careful surrounding advocacy. We can help shape policy, but we must be careful about advocacy. Q. Why are you below target? Are there other outside factors affecting targets (such as MSW, employment, etc)? A. There may be a perceived lack of flexibility by donor groups towards Canadian Blood Services. We need to be flexible on the clinic level as well. Need to be flexible to the public, the volunteers. It s tough to bring in donors, and then be able to retain them. Rest assured that we are doing everything we can. We are extending clinic hrs, trying to accommodate donors in many ways possible. Keep in mind that we also have a new Manager, Donor Experience that will focus on customer service. 3. OTDT STRATEGY BRIEFING Questions Discussion Sophie de Villers, Vice-President of Strategy Management presented the Organ and Tissue Donation and Transplantation Strategy. In August 2008, the Deputy Ministers of Health, with the exception of Québec, asked Canadian Blood Services to continue working on policies and knowledge transfer for: Leading practices, guideline developments, performance measurement, accreditation, public engagement and awareness National registries for living donor paired exchange, urgent and highly sensitized patients Designing a system in collaboration with the OTDT community When the Living Donor Paired exchange system was recently implemented, seven transplantations occurred. Only 15% of the tissues transplanted in Canada are from Canadians. There are serious concerns about tissue quality and traceability. A recent tissue recall in the dental community raised concerns about record keeping and traceability. Solid organs and tissues will have to be separated in the future because the needs and uses are different. We do not want to miss a transplant opportunity because of these differences. Canadian Blood Services will not procure the organs and tissues; the transplant communities will do this. However, the communities have great differences of opinion. There are over 30 uncoordinated tissue banks across Canada varying in size, capacity and quality. There is also an unequal access to tissue across the country. Canadian Blood Services was selected for this task because of its nonprofit status, having an independent Board of Directors, its experience working with the federal, provincial and territorial ministers of health, its insurance subsidiaries and its extensive risk management program.

5 In September 2008, Canadian Blood Services worked with 130 stakeholders (OTDT, ethics, legal, ICU, ED, tissue banks, donor families, recipients, government) to answer the question how do we establish a system that best meets the needs of Canadians? The stakeholders agreed that a national system was needed, but there was a very diverse opinion on how to get there. A series of public dialogues across the country will be held 2009/2010. There will also be a Central Information Portal so interested individuals and groups who cannot attend a dialogue session are able to obtain information and give their input. A plan will be presented to the Ministers of Health in June Questions/Discussion Q. Neutropenia Support Association has not been involved in the OTDT consultations. We have experience when it comes to consultations and governance structures A. The OTDT community is divided at times, and Canadian Blood Services is aware of that, however, it s all about the safety of the product. We will need to have firm objectives for a full OTDT system first. Q. How do we identify donors? How do doctors know that people are donors? How many missed opportunities have there been because doctors didn t know people/patients were donors? How much in the strategy is in identifying donors? Can you make it easier for doctors/surgeons? A. To date, all of our discussions have been how we identify donors. The issue of intent to donate is all part of what Canadian Blood Services is looking at. In regards to potential donors, the reason why we have little data is because it s not compulsory, so we may need to rely on surveys. Very few people identify themselves as organ donors. Comment: British Colombia has a registry which can be accessed online or when renewing driver s license. People can be specific on what organs they want to donate, and hospitals can access that information. The province has never encountered a family that wanted to go against the wishes against the individual. The system varies from province to province. Q. In Spain, organ donation is mandatory, and interestingly, there is motorcycle no helmet law. Is importing products covered by insurance? What about dentists receiving tainted products? Does Health Canada have statistics on what comes into the country? Could Canadian Blood Services reference or list the types of organs and tissues that are useable? *Can we state these in the summary notes? A. Auditing of the current CTO regulations has not started yet. The mandate of Canadian Blood Services in terms of OTDT has not been determined yet. It will depend on the outcomes of the public consultations. For instance, consultations may identify a need for a governance structure that keeps Organs and Tissues separate. Comment: We need to think about rural issues. For instance, in rural Ontario, qualified transplant doctors either don t want to come from a major urban centre to a rural area for organ transplant, and therefore the hospital may need to

6 transport the patient to an urban centre. Also, in rural hospitals, not all doctors may be trained in certain aspects or organ and tissue transplantation. 4. RLC REPORTS The RLC members reported on some of the highlights from their recent meetings: Atlantic RLC Margaret Rogers Margie focused on the Atlantic facilities redevelopment project. She mentioned that transportation of product seems to be the biggest issue with people in Atlantic. North Eastern Ontario and Nunavut Johanne Higgins Johanne mentioned the fire at a mobile clinic, and how it affected booked appointments and issues for rebooking to fill the need. She also highlighted the discussions by the RLC on issues such as multi-skilled workers, the new 8-to-8 clinic initiative, and a presentation from the funding office. Southwest Ontario John Wittkamp John was very thankful to be part of a great group (NLC). He said that the NLC is the best example of openness and transparency. As he will remain as the co-chair of the Southwest Ontario RLC, he will be watching closely whether the committee improves its balance of information sharing and engagement. Central Ontario Fred Vecchio Fred talked about the most recent meeting and focused his report on the new large volume platelet machines. As a platelet donor, he is very impressed by how small and efficient the new equipment is. He also mentioned the new bloodmobile that the region has purchased and spoke about the advantages it will have in Toronto in particular. Prairies RLC Amalia Pempengco Amalia highlighted diversity and youth, particularly their aboriginal RLC member who is a reporter who initiated a family event that supported OneMatch. She also reported back on the presentation she created re: The NLC Story: What is the NLC? That presentation is available in members CD-ROM s. This presentation will be useful to new and even existing RLC members. BC & Y RLC Michael Whelan Michael reported on behalf of Dr. Sam Krikler. The next meeting is coming up at end of the month. Michael highlighted what was going to be addressed. He mentioned collections in BC and the challenges the province is faced with, particularly regarding the change in the malaria deferral change and how that affects collections, donors and potential donors as many people in the province vacation in malaria-infected countries. Alberta Robin Hood

7 Robin focused on the recent RLC meeting and the engagement piece on communications surrounding pandemic discussion. He remarked how engaging the discussion was and that RLC members found real value from the conversation. He also mentioned the MSW piece and the discussion from the health professionals at the table mostly regarding the training modules. The members were assured that safety wouldn t be compromised. Other comments from members Pam Wishart wants to complement Canadian Blood Services in British Colombia she had a query and got a fast, accurate response. She was impressed. Robin Moore-Orr can an NLC member attend an RLC as an observer? Yes. Upcoming RLC meetings will be sent out to NLC members based on their region. Robin meant attending the pre-rlc meeting the night before the NLC meeting. As it is meant as a preparation meeting prior to the NLC, it may not be appropriate as it may detract from the goals of the meeting. 5. NLC/RLC EVALUATION RESULTS Marc Plante, Coordinator, Public Affairs, presented the results from the 2009 NLC/RLC survey. Discussion: Key points included: The survey was launched earlier than usual and closed Sept 4. This did not allow a lot of time for analysis, and therefore further analysis is ongoing. Combined RLC/NLC - 72% total response rate higher than last year, 2% higher than goal. Slide 12 would like to implement the Task Tacking Calendar across all RLCs to maintain threads of conversation and ensure we are addressing all items initiated at RLCs. Numbers are different due to larger sample size Questions: Q. Is there any way members could get a listing of all comments received in the survey? A. Yes, full comments and NLC responses will be circulated. Q. Having material earlier would make this session much more valuable. Can you do a website that is password locked so that members could access it? A. Canadian Blood Services will look into whether or not this is possible. We are certainly open to improving the survey. 6. ONEMATCH/STEM CELL PATIENT CAMPAIGNS Background Case studies

8 Guidelines Discussion Jennifer Philippe, Director, of the OneMatch, Stem Cell and Marrow Network gave a presentation on Patient Campaigns, which was followed by a facilitated discussion and plenary session. Jennifer described the status of the program to date: This registry is the 9 th largest in the world Operates in all provinces/territories with the exception of Québec 62 countries share registration information with each other Provinces and territories requested CBS to develop a business plan for the establishment of a national public cord blood bank Plan is submitted and pending approval Canada has 11 private cord banks and three public Canadian Blood Services supports patient campaigns through resources (pamphlets, buccal swabs), and training volunteers for swabbing and testing the swabs if the campaign will help all patients in need, not just one Demands for uniquely typed stem cells is increasing in Canada due to our large immigrant population However, 85% of stem cell donors are Caucasian, and are not suitable for many Canadians The demand for stem cells continues to rise in Canada Therefore, campaigns will always be with us. How can CBS meet their mandate to assist all patients, but also be involved with campaigns? CBS has limited resources Strategies include: educational events, In Honour Blood Donor events, Awareness events Canadian Blood Services has put a Patient and Transplant Liaison Specialist in place to proactively develop and maintain stakeholder relationships NLC discussed several campaign scenarios that face OneMatch staff Questions for clarification Q. The data contradicts some basic concepts. The success rate is average amongst Caucasians. HLA is complex amongst Caucasians; therefore it seems that we need more on the registry. A. There are lots of donors to draw from. In fact, many of our Caucasian donors are of European decent, OneMatch can then go global because many of the larger registries are from Europe. Statistically, it s more likely that a Caucasian person will find a match. The current data is only for Canadian searches. The strategy of focusing on diversity for patient campaigns has been because of the smaller ethnic donor pool. Current data is based on patient ethnicity. Q.Could you explain process for a patient campaign please?

9 A. First we identify the community, the community holds an event. OneMatch or the trained volunteers conduct the buccal swabs. Canadian Blood Services will do the DNA testing, and all potential potentials matches are placed on the list until a match is met. Q. Is there any cross-promotion between a OneMatch event and recruiting for whole blood? It seems that if a thousand people come out to support a patient for stem cells, that s an opportunity to recruit for whole blood. A. Currently, cross-selling has been sporadic across the country, but it s an area we are improving upon. When possible, staff cross-sell when there is an opportunity. There s lots more we can do, and as business lines mature, there ll be more opportunities. Results from Breakout Session (see Appendix A attached) 7. CORD BLOOD UPDATE There was no cord blood update as it was addressed in the previous presentation 8. Report from the Board of Directors Winnie Leung and Michael Mehta both made reports from the Board. Winnie discussed the proceedings from the last Board Meeting. An open meeting of the Board of Directors of Canadian Blood Services was held in Ottawa on Thursday, June 25, This was the 90 th board meeting and was open to the public. Verna Skanes, Chair, opened the meeting by acknowledging the passing of James Kreppner, noting not only did he passionately represent consumer interests on the Board, but James was also the conscience of Canadian Blood Services. It was an eventful year for the blood system. Highlights and milestones were shared. Of particular note included: Canadian Blood Services announcing the creation of a national expert steering committee to help guide and provide direction in the development of a new national system for OTDT. Canadian Blood Services successfully launched the LDPER. In Feb 2009 a match run generated 4 transplants that would otherwise not have occurred a very significant result. Advancements in the One Match Stem Cell & Marrow Network included the launch of a Chinese language service. This is an important step in providing language screening services and supports Canadian Blood Services desire to increase accessibility for all Canadians. Also, Canadian Blood Services advocacy for policy amendment has allowed certified interpreters to accompany deaf and hard of hearing people through the donation process. And our new Public Affairs Division will help continue the focus on external stakeholders. Presentations included:

10 Comprehensive Risk Assessment and Exposure Modelling got Blood Related Risks delivered by Ian Matheson, Chief Consulting Officer for Risk Management Consultants of Canada Ltd. And Dr Michael Busch, member of the Blue Ribbon Medical Panel Dr Busch, one of the world s leading transfusion medicine scientists, also presented on Progress and Challenges for Transfusion Medicine in the US and Implications for Canadian Blood Services. Also, many representatives from the public were in attendance and presented. Some included: Antonia Swann, widow of James Kreppner, made a presentation in his memory and voiced how she will continue to monitor the blood system s advancements to honour his legacy. Those concerned about Canadian Blood Services announcement for the consolidation of production services in Atlantic Canada as part of the National Facilities Redevelopment Plan presented: Katherine Poser from NB s Department of Health; Dr Thomas Barry, Chief of Staff, Regional Health Authority B, Fredericton, NB; and Michael Davidson, National Rep for CUPE, NB. They spoke about the negative impact they felt it would have on the blood supply to NB. Representatives concerned about the Multi-Skilled Worker Initiative spoke to the Board about the implications they foresee this having on patients and blood supply safety. Presenters included: Vicki McKenna, RN, Ontario Nurses Association; Pam Foster, Director, Government Relations w/ the Canadian Federation of Nurses Unions; Sean Allen, President of Local 477, OPSEU; and Adele derosenroll, representing BC Nurses Union. The Board was impressed by the passion and commitment of the presenters and assured them that Canadian Blood Services would not undertake these changes if it was going to negatively affect the blood system. A member of the LGBTTQ Working Group, Jonathan Niemczak, spoke about the positive work he has done and his willingness to work w/ Canadian Blood Services regarding promoting the research agenda for the MSM deferral policy and increasing donors and donor awareness. The president of Volunteer Canada, Ruth Mackenzie, presented and commended Canadian Blood Services for strengthening volunteerism in Canada. The next Open Board Meeting will be held Dec 2-4, 2009 in Toronto, ON. All members of the public are welcome to attend and participate. Dr. Michael Mehta discussed H1N1 preparation and facilities redevelopment. On May 18, 2007, the Board endorsed Phase I of the National Facilities Re-development Program. It included: - consolidate London, Hamilton and Toronto component production to a new single facility in the Greater Toronto Area. - renovate the Toronto centre (67 College) to establish a viable, long-term, GMP compliant donor testing lab. - transfer Halifax donor testing to Toronto - consolidate New Brunswick and Nova Scotia production to the Halifax region. - invest as required in the existing Calgary donor testing lab to provide necessary capacity for national business continuity.

11 - establish new collection sites in Halifax, Saint John, and London. Update: Atlantic The project team is currently reviewing the site selection to ensure there is appropriate future expansion capability. Leased space suitable for a collection site is limited in downtown Halifax which is the preferred geographic location. Canadian Blood Services was invited to attend and present at the New Brunswick Task Force meeting held June 15-16, A written report responding to all questions and information requested was provided. H1N1: Operational focus has been directed to enhancing Canadian Blood Services overall level of preparedness. The organization is currently undergoing a series of pandemic preparedness scenarios to ensure business continuity as well as undergoing preventative strategies to minimize the levels of sick leave during a pandemic. The pandemic preparedness undergone by Canadian Blood Services was driven by the prior Avian flu virus. Currently, there are over 1400 reported cases of H1N1, the median age is 23. There have been 72 deaths attributed to the virus, with the median age being 52 years old. We are being proactive by using a contingency fund to purchase antivirals for staff (Tamiflu). Questions Q. Tamiflu isn t Canadian Blood Services an essential service? Why would you have to pay? A. Tamiflu is an antiviral, which is different from a vaccine. Vaccines (and the cost to administer) are provided by the provinces. Q. Will Tamiflu be provided to Canadian Blood Services employees only? A. Yes, it will only be provided to staff at this point only. The prescription is good for up to five years. 9. MSM POLICY UPDATE Feedback from LGBTTQ Working Group Comments Jennifer Philippe discussed the donor criteria for stem cell donation and the policy change to the Men Having Sex with Men (MSM) question when screening potential donors. As of October 2009, Canadian Blood Services OneMatch Stem Cell and Marrow Network will begin accepting registrants as potential stem cell donors who confirm having participated in the risk activity of MSM with the last five years. Lorna Tessier gave a brief summary of the LGBTTQ working group. She gave a history of the previous consultation work, and the history of the working group from April 07 to present. She mentioned some positive quotes from the working group members. She also mentioned that Jennifer s presentation was given to the LGBTTQ working group and was seen as a positive step, albeit a small one. Questions Q. What about other deferrals such as malaria? Do they fall under the same criteria? A. Criteria is different between blood and stem cells because of the scarcity of supply. Malaria is always communicated to transplant centres. For false positives, an algorithm is used.

12 Q. We know of MSM, but what about a woman who has had sex with a man who has had MSM? A. In terms of policy change, we currently are focusing on this one issue. Each high-risk criteria will be addressed by a scientific risk panel individually. Comment. NLC Member congratulated Canadian Blood Services on the progress made since the MSM policy was first discussed with the NLC.The Canadian Hemophilia Society s committee on blood safety and supply is in complete support of Canadian Blood Services position both on blood and stem cell decisions. Overall, the NLC was supportive of this initiative. 10. FREEMAN CASE Watson gave a brief update on what the case was, the history, and why it is occurring. Canadian Blood Services had to file a claim for negligent misrepresentation in order to find out who the donor was to recall that person s product. Kyle Freeman counter-claimed that it was in violation of Section 15 of the Charter. Egale and Canadian Hemophilia Society are granted intervener status. The Canadian AIDS Society is friend of the court. The trial will try to answer 3 questions: Does the charter apply to Canadian Blood Services? If so, does this policy discriminate under Section 15 of the Canadian Charter of Rights? If so, is the policy nonetheless reasonable under a free and just society? Watson mentioned that once decision is rendered, he d be happy to come back and talk about implications. Questions/Discussion Q. Should a stem cell transplant be successful, where the parents have agreed to the transplant knowing it s infected the transplant is successful and the child grows up to develop HIV or Hep C, and it s argued that the parents made their decision under duress, would Canadian Blood Services be liable for providing tainted bone marrow? A. We ve learned never to say never. The courts will always be open about considering rights and recourse but we can t predict what people will do in the future. Q. Do you anticipate media coverage? A. If there s a federal election and H1N1 happens, the case could be pushed to the back pages, however, we are prepared. I anticipate media at the trial, but because it s a long trial, probably not for the duration. Q. Is there a website to follow the trial? A. If there is, it s not one we set up. Q. What is the likelihood of an appeal? A. With lots of grey area, it s possible the ruling decision will be one way or the other. Finding of law can be appealed, finding of fact can be appealed as well, but it s hard to tell what the next stages will be until the first one is complete.

13 Q. Did Canadian Blood Services try to settle out of court? Have they tried? A. All parties have collaborated well, and everyone involved is seeking an answer. It was possible for us to have withdrawn but we chose not to because we really want an answer to those three questions I mentioned earlier. Q. Is there anything the NLC or patient groups can do? A. It s important that the NLC is engaged, fully understands the implications and communicates the information to their respective groups. TASK TRACKING CALENDAR Marc Plante discussed the pending tasks and their status. An updated version will be sent out electronically with the summary notes. NOTE: Next Meeting Dates May 2010 September 2010 ONEMATCH/STEM CELL PATIENT CAMPAIGNS Appendix A Question #1 Does OneMatch need guidelines? What is your initial reaction? Yellow Group Initial response was yes, guidelines are a great idea. We were looking at making sure we are on the same wavelength exactly why those guidelines are necessary. The end result is we want to populate the registry, or we want to be proactive and are reactive with the whole process so that people who join the registry understand the commitment. The methods of distribution (toolkit and information) don t all have to come from OneMatch. Because there s lots of different ways to get that information out there once you have the basis from the toolkit. For instance, through partner organizations who get those calls as well, if they re trained, they d be happy to pass that information along once and help them get established in the process. Green Group Everyone agreed that we need guidelines. What we do outside of Canada is beyond our scope. However, we can build a list of potential donors for the future. Blue Group Yes we need guidelines. Our initial reaction is that it seems OneMatch has limited resources. It s important for family and community involvement in patient campaigns.

14 OneMatch needs to encourage the donation of stem cells, blood and tissue. All of these business lines need to be supported to some degree. Priorities should include: 1. family and friends 2. Registry 3. community including international Red Group Yes, we need guidelines. Initial reactions include: We must increase the donor base in Canada By increasing the Canadian donor base, it benefits registries globally Need to develop more awareness around OneMatch and organ and tissue donation Canadian Blood Services needs to tap into existing resources Question #2 Can you identify any gaps in the guidelines? Yellow Group Need to populate the registry Non-directed donation needs to be encouraged Capitalize on the awareness opportunity Proportionality Balance resources with groups with more need Universality There should be a sympathetic response to every request Green Group Ensure that patient campaigns are community-based even if it is in honour of a particular individual. OneMatch annually plans drives focused on ethnic groups be proactive instead of reactive Do stem cell and patient drives during blood donor clinics perhaps at the same time as a What s Your Type? event. Advertise or appear on cultural community T.V. channels i.e. OMNI, APTN, and advertise/educate people on OneMatch. Blue Group Guidelines should be for ALL patients Support/resources could be allocated for rare or difficult to find (Critical) patients. Educate all patients, volunteers. Evaluate the level of education required. Encourage/support all requests, no matter how small it may be. Need campaign leader. Define resources supplied for one individual vs. community. Educate about ALL donations

15 Evaluate (lessons learned) each campaign. AGENDA Red Group Current gaps: focus on difficult cases (i.e. rare HLA), patients with no money issues, and keep focus on Canadians. Ensure that resources are distributed to all equally. There needs to be clarity regarding how to implement a patient campaign, who qualifies, what are the guidelines. Allow easy access to information. Triage requests, perhaps using an online component if possible. The information could be used as an opportunity to build the global donor base. Make sure there is a commitment to follow-up. Question #3 What would constitute an exception to these guidelines? Under what circumstances? Yellow Group Principles guide decision making process, but under what circumstances? Every situation needs to be reviewed. Green Group Is there already a guideline stating you cannot remove yourself as a donor if you donated specifically for a person.? Procedures: policies should always be followed, but there are no exceptions. Blue Group The only exception should be for family or individual, and it should be based on time. Red Group OneMatch should go back to the guidelines to encourage every request. Find or move resources to assist every request (Canadian Blood Services would be the conduit). Develop a plan similar to pandemic planning. OneMatch needs to show on an organizational chart who that go to person is.