COMMUNITY LIAISON COMMITTEE MANITOBA & NORTHWESTERN ONTARIO Summary Notes of the meeting of the Canadian Blood Services Community Liaison Committee held in Winnipeg on Tuesday, 31 May 2005 at 1400 hours PRESENT: D. Wunderlich, Co-Chair K. MacDonald J. MacLeod K. Olson A. Narth I. Freynet, Co-Chair H. Janssens J. Nicholas A. Pempengco OBSERVING: M. Hyduk J. LaForest, Recording Secretary REGRETS: D. Angus J. Canart R. Currie J. Rodger 1.0 OPENING OF THE MEETING The meeting was called to order at 1405 hours. 2.0 REVIEW OF AGENDA The agenda was reviewed. 3.0 APPROVAL OF SUMMARY NOTES The Summary Notes from 25 January 2005 were reviewed and approved. 4.0 BUSINESS ARISING 4.1 National Liaison Committee (NLC) Representative Report J. MacLeod indicated that an NLC meeting had not been held since the last CLC meeting, however, the group was preparing to meet in Ottawa June 6 th. A copy of the agenda for June 6 th was distributed for information, along with a list of tasks pending for the NLC. (handout) One initiative that J. MacLeod has been involved with at the national and local level is youth marketing. He noted that 2,914 first time blood donors have been recruited from schools he is affiliated with. There is work being done on the east coast to have education on the need for blood donors and blood donating included as part of the regular high school curriculum. A new representative will be required on the NLC this fall when J. MacLeod completes his term. Two nominees are required to be submitted to the NLC for selection. Interested members should identify themselves at the next CLC meeting. ACTION: ALL Page 1 of 6
4.2 CLC/NLC Evaluation Results of the CLC and NLC evaluation were shared with members (handout). Comments on both groups were mostly positive. One area of concern identified by a few CLC members (those who do not have a formal organization structure) was they do not have a clear cut idea how to distribute information from CBS to their peers, or even who the information should be shared with. The Manitoba Hemophilia Society acknowledged publicly that CBS was on the right track with the formation of CLCs and is meeting the intent of Justice Krever s recommendations. There is a need to increase awareness of CBS in the general population. CBS must become a brand name before feedback improvements will be noted. 4.3 Membership Discussion M. Hyduk has tried to recruit representatives from Aboriginal and youth groups to the CLC but hasn t had much success. It was suggested that he contact cultural or volunteer organizations who may be able to provide a lead to contact. Universities, colleges and private high school student councils could be contacted to get student reps for the CLC. Also suggested was the use of interest postings in the media. 4.4 Recipient Stories In order to raise awareness for the need for blood in the general population, CBS has begun sharing recipient stories with the public through various types of media. Coinciding with World Blood Donor Day, Samar s story, which was viewed on video at the meeting, will be used to promote the need for blood (handout). J. MacLeod shared his story (handout) and noted that he was a poster boy for the Cancer Society in the 1990 s. Recruitment of recipients to share their stories, either verbally or in print only, is underway. Members were requested to recruit stories from among their colleagues, family and friends and forward names to M. Hyduk. ACTION: ALL World Blood Donor Day, June 14 th, will be celebrated in Winnipeg. CBS flags will fly at the corner of Portage & Main for the entire week of June 14 th. CBS will be starting a Legacy Club within the next few months. Donors will be able to give blood in honour, or in memory, of another person. A copy of the cards and posters was circulated for review. 4.5 Greyhound Bus Schedule Update The Motor Transport Board, a non-partisan group, will grant final approval of any route changes proposed by Greyhound once they have compiled data gathered from community hearings that were held around the province. The University of Manitoba will also supply data for consideration when determining new routes. Any cuts to rural areas will have an impact on CBS ability to service rural hospitals in Manitoba and northwestern Ontario. 4.6 West Nile Virus Update Dr. Lane provided an update on plans for West Nile Virus testing in 2005 (handout). CBS will begin single unit testing for WNV when the first positive blood donor is detected or a high prevalence of confirmed WNV cases is identified in a specific health region. Single unit testing will be discontinued following a period of two full weeks where no new positives are identified. CBS will not stockpile plasma products this year in advance of mosquito season. CBS will notify Manitoba Public Health as soon as a positive donor is identified. Cadham Provincial Laboratory will notify CBS when they identify a WNV pos patient. It was noted that there is no formal notification agreement with the Ontario Government for cases in northwestern Ontario. Page 2 of 6
There were no instances of confirmed WNV in the donor population in 2004, whereas 14 positives were reported in 2003. The first WNV pos bird was identified on May 31 st in Prince Edward county, Ontario and two horses have been confirmed positive in South Dakota. CBS tests year-round for WNV. 5.0 NEW BUSINESS 5.1 Donor Satisfaction Polling Results (TBC) Results of the polling survey were reviewed (handout). The data scale was changed from a 7-point to a 10-point scale, to follow suite of what other countries use. This was done to allow ease of data comparison. Survey results confirmed there is a reduced awareness of CBS and many Canadians still believe that Red Cross runs the blood system. Recognition of the CBS brand has increased but there is a long way to go. Public intent to donate blood has also declined from previous years. On the statement Canadian Blood Services is efficient and is responsible for funds, 61% of respondents replied they did not know, which indicates that CBS needs to get more information out to the general public. Incorrect blood shipments, although they rarely happen, have a huge affect on hospitals and could jeopardize a patient s life. Transport staff and courier handlers need to be better trained. It was noted that occasionally Kenora Hospital receives blood destined for Dryden. The use of wireless information technology and coloured coolers and shipping containers could reduce errors. Volunteer demographics closely match donor profiles. Overall the volunteer experience was rated fairly highly. Opportunities were identified for some quick wins, such as better snacks, extra thanks to donors, thanking donors in their own language, and increased communications with better messaging. 5.2 Red Cross Conviction The Canadian Red Cross Society (CRCS) was convicted of supplying tainted blood during the 1980 s and made a public apology. It was noted in media coverage of the story, blood bags with the CBS logo were shown. It was suggested by members that CBS should extract an apology from the media for their error, which would help to get the message out that CBS and CRCS are two separate organizations. 5.3 Blood 101 and Centre Building Tour The video, Blood 101, was shown to members to provide a brief overview of the blood collection and testing process, prior to a tour of the facility. 6.0 FUTURE TOPICS FOR DISCUSSION 6.1 Suggested topics for discussion were: Information on the Buffy Coat Project and Impact of Implementation Pandemic Concern Regarding Asian Bird Flu Diversity Projects & Committee Membership Address Ethnic and Youth Demographics Effective Means of Mass Communication How to Get Data Back to Member s Peers 7.0 NEXT MEETING DATE The date of the next meeting will be Tuesday, 04 October 2005 at 2:00 p.m. 8.0 ADJOURNMENT The meeting was adjourned at 5:15 p.m. Page 3 of 6
SAMAR S STORY Honouring Our Lifeblood Recipient Speech by Samar Chaker National Gallery of Canada November 8, 2004 Good evening everyone, Tonight, I am privileged to speak to an amazing group of people: the donors, volunteers, partners, sponsors and the staff who help in the process of saving lives. It s a remarkable feeling to be included in an event that honours Canada s heroes. My reason for being here tonight is to share my story so that I can remind each of you that all your hard work truly pays off. I am one of the many whose lives have been touched by your endless efforts towards making a difference. Seven years ago, I was asking to leave school on a daily basis because I didn t have the normal energy of a typical 10-year-old. Everyone thought that I was just having trouble at school. In reality, my blood counts were dropping, and my body was getting weaker and weaker. I was constantly bruising and getting nose bleeds that would last for hours and hours. So, on the day of my 11th birthday, I went in to get a blood test. Later on that night, we received a phone call from my doctor. My blood counts were fatally low, and I was not to be around any sharp objects because anything as small as a paper cut could result in my bleeding to death. The doctor also advised that I remain still and not have anyone bump into me because, if I fell down, there was a chance that I would bleed uncontrollably. The following morning, a blood specialist again stated that my counts were fatally low, one being my platelet count. The doctor informed us that I was to be admitted to the Windsor hospital immediately. At that time, they assumed that I had Leukemia and told my parents to start praying that that wasn t the case. As it turned out, the hospital diagnosed me with Aplastic-Anemia, and then my parents were told to start praying that the test was wrong and that instead I had Leukemia. I remained in the hospital for three weeks and received blood and platelet transfusions on a daily basis. My condition, however, was only getting worse. It was then that I was flown to Toronto Sick Children s Hospital in the hopes of receiving more advanced medical treatment. It was at Sick Kids that I was officially diagnosed with Aplastic-Anemia: a disease that causes the failure of the bone marrow to produce all blood cells including red blood cells, white blood cells, as well as platelets. This is a very rare, life-threatening disease that only occurs in four Page 4 of 6
out of roughly 500,000 individuals each year. My body was deteriorating and each day was worse than the one before. I required several transfusions daily just to keep up with the amount that I was bleeding. My body was covered in bruises and patikia, which is the bursting of blood vessels beneath the surface of the skin. I was extremely weak and had completely changed physically from all the treatments and medication. Finally, it came to the point where the doctors informed my parents that I had only three months to live if even that. My last hope was a bone marrow transplant, which guaranteed a 50% chance of my survival. This seemed to be very hopeful because I have five other siblings, so we assumed one of them would be a match. After being tested, we found out that my sisters Amal, Marlene and Cherine matched each other 100%, and that my sister Tammy and brother Wassim also matched 100%. It was only me, the one in need of the transplant, that didn t match any one of my family members, including my parents. At this point, my family once again turned to Canadian Blood Services for help in the hopes of finding me a donor from the public. It was so uplifting to see the response from my community and other communities around the country and even across the border. But, one month later, I had a very severe seizure. The seizure caused me to bleed heavily from my nose, my ears, and to the point where I was even vomiting large amounts of blood. Within moments, about 30 doctors and nurses were attending to me. All the machinery and tools had to be brought up to my room from the ER because there was no time to send me down. My family was informed that I may not make it and that if I did, I would remain in a coma for a period of 10 to 15 years. But even then, it would never be the same because they thought that my brain was haemorrhaging and that would cause a lot of brain damage. During this entire time, I recall thinking that I was asleep and dreaming, and the dream that amazed me most was as follows: I was in a beautiful place, with waterfalls, streams, trees, flowers and animals all around me. I knew that I was indeed in Paradise. I was not afraid, nor hurt, angry, or sad, but so content and thankful to be away from all the pain. I looked up and saw my uncle, who had passed away when I was younger, coming towards me,. He told me that he was so proud of me and what a strong little girl I had become. He also said that he knew that I was being strong for my family, but that now he thought it was time for me to go. Suddenly, we came to a place where right there and then I knew if I continued on, I would never go back and see any of my family members again. It was there that I stopped and turned around. I could see my hospital room and there I was, looking at myself lying down in a hospital bed and looking very tired and sick. And there was my dad: he was looking at me, but at me in paradise with my uncle not at me behind him in the hospital bed. He then started speaking to me, saying that it was okay to go, that he understood why I chose to leave and that he loved me, would miss me and think about me every day. And then, miraculously, I started hearing my dad s true thoughts and feeling his true emotions. He wasn t ready to let me go and say goodbye, and he didn t know what he was going to do or how he was going to live each day knowing that I was gone. I saw my mother on her knees praying. She couldn t stand the thought of losing me and asked that all the children in that hospital be healed if I had to leave. Then I saw each of my siblings. They all had brave smiles on their faces, telling me that it was alright to go and that they weren t mad at me at all, but that they loved me, were proud of me and would miss me. At this point I was feeling all their emotions at once, which hurt me and greatly affected me. Page 5 of 6
I couldn t stand the thought that I could cause so much pain to the people I loved the most. So, I turned to my uncle and told him that I would not be going with him. I also made a promise and that is if I could go back to my family, I would dedicate my life to helping others and telling people my story so that I could share my miracle with them. It was then that I woke up and called out to my sister Marlene. I found her there crying beside me and holding my hand. The doctors immediately told her to go to my other side and call my name to see if I would be able to respond. I did. I started telling Marlene my dream and everyone in the room was in shock. One nurse had to walk out because she started crying. But, what shocked them the most was that I was talking and moving and responding a lot better than they could ever imagine. They thought that I may never talk again, that I may not have control over my limbs, that I may be blind, deaf and so much more. Instead, I am now known as the girl who is a breathing, walking, talking miracle, because from that day on without the need of a bone marrow transplant I was gradually improving, all on my own. My bone marrow started working again on its own and my body was now responding a lot better to the treatments. I was on my way towards a full recovery. Today, I am blessed to say that I no longer have Aplastic-Anemia, but have recovered completely from the disease that almost cost me my life. After hearing my story, many people tell me how sorry they are for me and for what I had to go through. But, I don t want a single person to feel sorry because what I went through was truly a blessing. It s what brought me here to be with all of you: to share my story with you and hopefully inspire you to continue on with helping others. Your contribution to Canadian Blood Services does not go unnoticed; it is appreciated from every individual you have helped save. You may not realize what you have truly done. But let me tell you, what you have done is give a child back to their parents, a mother or father back to their children, a person back to their loved ones. I believe that each and every one of you is an instrument of love, and that a higher power is working through your hands to make miracles happen. Each of you are heroes, and I want you all to leave tonight knowing that it s people like you who are able to keep love in this world because of the goodness you have brought to it. Continue on with what you have started, and inspire others to do the same. I am extremely honoured to be in your presence tonight, and would like to extend my deepest gratitude to Canadian Blood Services for allowing me to be included in this celebration. This is the beginning of fulfilling my promise and I will do all I can to keep that promise. When things get hard, I will look back and remember all of you and feel encouraged to keep going and never give up. Thank you very much for this opportunity; this is a night that I will never forget and will forever cherish. Thank you! Page 6 of 6