Conférence de presse de M. William Cusano, premier vice-président de l'Assemblée nationale

Soutien à la cause du don d'organes

Version finale

Thursday, November 11, 2004, 10 h 06

Salle Evelyn-Dumas (1.30), édifice Pamphile-Le May

(Dix heures six minutes)

M. Cusano: Bonjour. Et c'est un plaisir pour moi aujourd'hui d'initier ce point de presse, cette conférence de presse où notre invité spécial est Kristopher Knowles, à ma droite, Kristopher Knowles qui s'est donné une mission de faire, à travers le Canada, une sensibilisation particulière au niveau de l'importance des dons d'organes. Je pense que, pour un jeune homme de 15 ans, il démontre un courage énorme. C'est un jeune homme qui est en attente d'une transplantation du foie. Alors, si on prend tout ça ensemble, le fait de son jeune âge, le fait qu'il a justement une situation où il est en attente d'une greffe, on voit le double courage de partir et, jusqu'à date, on m'a informé qu'il a voyagé au-delà de 2 900 km. Ça, c'est quelque chose que même moi, transplanté, je ne suis pas capable de faire.
Alors, sans plus tarder, Kristopher va vous adresser en anglais ses préoccupations. Je pense qu'il a une mission. Il dit quelques mots de français mais, après la transplantation, il va devenir bilingue. Right? So, Khristopher, you can tell your story in your own words. The reporters will certainly understand you, and good luck!

M. Knowles (Kristopher): Thanks. Hi! My name is Kristopher Knowles. I am 14 years old and I've been waiting for a liver my whole life. I've been waiting 14 years. I've had over 20 operations to save my life and, about four years ago, my road manager George Marcello walked across Canada to raise awareness for organ and tissue donation. And I was at the Liver Foundation at the time and I got to meet him and he was talking about organ and tissue donation and about... and then he inspired me because I wanted to do a walk, the same thing he did, and he inspired me. So, about two years ago, I asked him if I could do a walk across Canada to do the same thing and sure enough, he said yes. And today is 310th of our 353-day campaign and after George can take over.

M. Marcello (George): Thank you, Kristopher. Kristopher was one of the most amazing human being I've ever met. Four years ago, as he stated, I met a young boy that seemed like your average normal boy and it was not until the end of the day that he lifted up his shirt and showed me all the scars on his stomach and told me that he was on the waiting list all his life for a liver transplant and I thought I'd just met the most amazing boy ever. Kristopher expressed a wish to me that he wanted one day to walk across Canada and his wish was to help save the 4 000 other Canadians that are on this waiting list. And after a couple of years of making sure that this could get done. We had to make sure that the school was going to be O.K., within his medical doctors were going to be O.K., within his family. Basically, I found out that the whole community was behind Khristopher. On January 8th 2004, Kristopher's wish was kicked off from his hometown, Sarnia, and we started walking from Sarnia to Vancouver, and we completed the western leg. Recently, we began the eastern leg of the walk in St. John's, Newfoundland, and we're making our way back to Toronto.
And Montréal is going to be our official last stop on November 26. When we entered Ontario, we're calling that part of our campaign «The homecoming». Kristopher's wish is to help save nearly 4,000 Canadians to find themselves on this waiting list, that need all organ transplants. Kristopher's wish is to help also lobby the Government... three levels of Government, so that we can make the best improvement possible in our country. Sadly, Canada ranks as one of the lowest organ donating country in the world. Although we do have some of the top medical doctors that have developed some of the most outstanding research development towards organ donations, we still have the lowest organ donations.
And what we are offering as a suggestion is to possibly develop the system that Spain is presently using, and it's called the upped-out system, where a registry would be created and Canadians would get the chance to upped-out. We're trying to inspire the Provincial Government as well so that may be one day this could be debated and may be Québec, one day, could have itself a Québec registry list. And we know that, in a system such as this, that we would have a great potential to save much more people that are on the waiting list. And it is under that wish that Kristopher is hoping this develops, and we've had a tremendous impact along the way.

M. Cusano: Merci. Thank you, M. Chabot. Est-ce qu'il y a des questions adressées à notre ami Kristopher?

Mme Rich (Kristy): Kristopher, I mean, you are waiting for a liver transplant, you've walked more that 2 900 km. What has it been like? Has it been difficult? It's getting cold out there, so...

M. Knowles (Kristopher): Yes. Actually, it's been really fun, it's been a big experience to me. I've never thought to walking across Canada in my life until I met George Marcello. And, so far, we've had only sick day, and I was in Vancouver; at the end of our walk, I get a little bit of the flue. But other than that, I felt better that I was at home.

Mme Rich (Kristy): How much money have you raised at this point?

M. Knowles (Kristopher): Well, we're not really raising money. We are raising money to get to the walk, to pay for gas, and stuff... supplies that we need. Like we have a film director Merv Roberts, who needs tapes, so we buy those with the money that we raise, as well as we are selling flags. We didn't bring them up here, but... We're selling these flags for $10 to help us. But it's mostly awareness, it's mostly to get aware of... to bring aware of organ and tissue donation and encouraging everybody to sign their organ donor cards, as well as let their family know about their wishes.

Mme Rich (Kristy): What sort of a response have you had from the different levels of government?

M. Knowles (Kristopher): We've got a very good response. I've been to every legislation building, so far, and we've got a response pretty much from everybody, and mostly the community because in other things we are hitting the schools and the kids. They'll be the ones that will be going home, talk to their family. And at the start, in this, I wanted to hit the schools because they're the ones that are gonna be getting their drivers license and be signing those cards. So they'll be the ones to talk to.

M. George (Marcello): Just to correct, we answered that question. Kristopher's wish has generated 700 media stories. He's visited 200 schools, where he has directly reached close to half a million students, thus far. He's visited a 175 communities. Basically, when he enters a community, the whole community knows about Kristopher's survival, and the awareness and information about organ and tissue donation gets that much more heightened in each one of these communities.

M. Cusano: Merci. Est-ce qu'il y a d'autres questions?

M. Plouffe (Robert): M. Cusano, où en êtes-vous avec votre propre...

M. Cusano: Mon propre projet de loi est à l'étude présentement au comité de la législation, et ce sera bientôt... On me dit que l'étude va être terminée, et ça devrait être positif.

Mme Rich (Kristy): ...in English about your bill?

M. Cusano: Well, the bill, basically... What the bill will do is that when a Quebecker will have to renew his medicare card, there will be, on the form, a space whereby he will decide at that time whether or not he's a donor, so that he will have the time... Because usually, you take more time filling out a form when you renew something than when you receive a little... in the mail, when you do receive any kind of card, your credit card and all the other stuff that comes along with it, people don't pay any attention to that. So the idea is to make sure that there's a million and a half Quebeckers each year, because our renewal rate is a million and a half a year... so that they will go through the thought and the gesture.
The bill provides that, if the individual has indicated that he consents, the card will then contain an embossed symbol, a letter or number that will indicate to the hospitals that there has been a signature to that effect. And at the same time, it will contain a sticker and, if that sticker is removed by the individual at any particular time, it means that for whatever reason, and I do respect the will of the individual, but if the person does change his or her mind, he can therefore remove that consent. In French we've been calling it «un consentement éclairé», which I think is extremely important. And it will eliminate an awful lot of problems in terms of transferring of information from the individual to the hospital by going through with that bill.

M. Plouffe (Robert): M. Cusano - peut-être en français là - ce double consentement là, vous pensez que ça va faire augmenter le nombre de donneurs?

M. Cusano: Moi, je pense, par le fait que la personne aura à se prononcer au moment où il renouvelle sa carte de membre... sa carte d'assurance maladie, c'est très différent de recevoir avec une carte, présentement avec la carte de santé, de recevoir de la publicité pour les dons d'organes. On a tendance aujourd'hui, on en reçoit tellement de ces choses-là, de ne pas y porter beaucoup d'attention. Alors, le fait que c'est fait au début, lorsque la personne fait sa demande... Par la suite, une fois que cette demande est traitée, la carte de santé aurait sur elle-même un sigle en relief pour que justement - vous savez que je suis un organisateur, hein, c'est bien important de s'assurer que les choses fonctionnent - et alors en ayant un sigle en relief sur la carte, lorsque votre carte santé, elle passe à l'hôpital avec ce qu'on appelle communément le «clic-clic», votre volonté qui a été exprimée, qui apparaît sur la carte, automatiquement est transférée au niveau des dossiers de l'hôpital.
En plus, pour s'assurer qu'il y a un respect de l'individu au niveau de son choix vraiment éclairé, il y aurait un autre collant qui serait affiché sur la carte et, à ce moment-là, si pour n'importe quelle raison, parce que je crois beaucoup à la liberté individuelle, tu sais, la liberté de la personne de vraiment pouvoir faire le choix et de décider ou changer d'idée à n'importe quel moment, là, à ce moment-là, il n'y aura seulement qu'à décoller l'autocollant, et ça veut dire que le consentement a été retiré.

M. Plouffe (Robert): Est-ce que vous pensez que vous allez augmenter le nombre de donneurs?

M. Cusano: Je pense que oui. Je pense que oui parce que le fait qu'il y aurait 1,5 million personnes qui vont être obligées de lire cette section-là, là, parce qu'ils vont remplir le formulaire, alors il va y avoir une section qui va toucher justement le don d'organes où il va y avoir trois questions, question n° 1: Je consens - l'habituel - au don d'organes, je ne consens pas ou je ne suis pas prêt à prendre cette décision. Je pense que ça fait réfléchir, ça va faire réfléchir au moins 1,5 million personnes par année au Québec.

M. Delisle (Norman): Si je comprends bien les données à Transplant-Québec indiquent qu'il y a de la difficulté à trouver des gens susceptibles de recevoir une greffe. On dit qu'il y a 900 personnes en attente puis il y en a eu seulement à peu près 500 qui ont bénéficié d'une transplantation.

M. Cusano: Oui. Le problème, c'est justement au niveau du nombre de donneurs potentiels qui, malheureusement, ne fonctionne pas de façon dont il devrait fonctionner. La question que je me suis posée depuis des années: Comment se fait-il que dans certains hôpitaux à travers la province on reçoit d'un hôpital 10, 12, 15 donneurs et dans d'autres hôpitaux, zéro? Alors, si on prend tous les hôpitaux que nous avons au Québec et particulièrement aujourd'hui où le fait de l'âge de la personne n'est plus un facteur... Vous savez, il y a 15 ans, on pensait que pour être un donneur potentiel, il fallait mourir dans un accident de motocyclette quelque part puis, tu sais, avoir un corps d'un jeune homme. Aujourd'hui, ce n'est plus le cas, tu sais, la science est avancée au point où est-ce que c'est que nos transplanteurs nous disent: Indépendamment de l'âge - indépendamment de l'âge. Le Dr Doyle, ce matin, nous disait qu'il avait été chercher un foie dans une personne de 80 ans, là, pour le transplanter. Si le foie est en bonne santé, il est en bonne santé, point.
Alors, il faut toucher beaucoup de gens, il y a certainement de l'éducation, et je crois que par le fait qu'une personne aura à se prononcer au moment où il fait sa demande, on touche 1,5 million personnes par année, je crois que ces personnes-là vont être beaucoup plus sensibilisées que le fait de recevoir présentement avec leur carte d'assurance maladie, tu sais, un petit feuillet qui dit: Bon, si vous voulez faire don d'organes, signez l'autocollant puis vous mettez à l'endos.
Mais le problème, c'est au niveau des donneurs, c'est au niveau aussi de l'organisation. Vous savez que le Dr Couillard a présenté un plan d'organisation sur toute la question de l'organisation des dons d'organes, disponibilité des salles d'opération, puis ainsi de suite, il y a beaucoup de... Parce que vous pouvez avoir des patients qui sont des donneurs potentiels, mais à cause du fait que, dans certains hôpitaux, l'organisation n'est pas là... n'est pas en place à 100 %, c'est que le donneur ne peut être donneur, dans le sens, un trois, quatre heures par après parce qu'il dégénère.
Alors, le plan Couillard qu'il a présenté l'année dernière est un excellent plan en ce qui me concerne et, du côté du consentement, qu'on va aller chercher avec la loi, moi, je crois que le Québec qui est à la tête du peloton en ce qui concerne le nombre de donneurs au Canada, le Québec est à la tête, mais, même si on est 19 %, 20 %, moi, je pense que... en tout cas, en ce qui me concerne, je n'arrêterai pas ma cause avant d'arriver à 40 %.

M. Delisle (Norman): ...Kristopher, if his life is threatened by the fact that he has not a new liver?

M. Knowles (Kristopher): Yes. In the past five years, they've taken away pretty much everything that I can do. They took away my sports, because if I get hit the wrong way, I could die. So, they took away my sports, and they said... the doctor said that I'm better on the road than being at home, time with my brother playing sports, like I just said. And so, they've pretty much taken everything away from me because...

M. Marcello (George): He has undergone 20 operations in the past 14 years to keep alive, and somebody's operations were lifesaving operations and innovative operations. He is being banded right now, 49 bands, he's probably the most banded human being in North America. He's got an incredible will to survive, that is why he is here today, that's why he's not dead. And even the doctors are amazed, he's been called a miracle many times in his 14 years. And that's why we feel with kristopher's campaign, that a lot of hearts and minds and eyes, a meaningful discussion will arise about, you know, bringing... about, you know, a better system here in Canada, so Kristopher and many other infants like himself do not need to die, because there are enough organs to go around for everybody.

Mme Rich (Kristy): Is there any estimate how much longer Kristopher might have to wait?

M. Marcello (George): It's hard to say, his tenacity to survive is so strong and that's what keeps him going. If he didn't have this tenacity, he would be dead like... If you look at him from a medical point of view, he should not be alive. He's got an incredible spirit insight he will not let the disease win. And, you know, he...
When I met him the first time, I basically dropped everything in my life to get behind him on this campaign because I knew he was going to have an impact on the whole country and he has been and we feel that through Kristopher's campaign that we are going to get some changes and the potential to save everybody on that waiting list will become a priority.

Mme Rich (Kristy): Then you also want to cross Canada. What inspired you to do that?

M. Marcello (George): Well, basically, when I received my transplant in 1995, I had two days left to live, I received a liver transplant and there was hours left to my life, I was fortunate enough to have gotten that call and received that liver. I was out of the hospital in a week and when I was going back for my outpatient visits, I would meet with about 40 or 50 patients that were waiting for organ transplants and I would talk to them. And the sad part was... is that I knew half of them were going to die, you know. And I knew maybe one or two would be the last time I'd be talking to them that week.
And what left me... After, I'd leave the hospital with the feeling that why is this happening in Canada? You know, why are so many organs going to waste when people do want to donate them? You know, why is this happening? And something had to be changed and something had to be done. And that's why I'd like, walked across... I just became obsessed with this idea. And that was about seven years ago and then I met Kristopher and...
From coast to coast, we are meeting Canadians that agree with this, you know. That agree that we should make these changes. And I have not met one person that has anything against organ... donation. So then, why aren't we at the top when it comes to organ donation? Presently, our system that's in place is preventing from that to happen. It's a prehistoric system. We need to update it and improve it. And that's what Kristopher's wish is all about. He's ringing the bell.

M. Plouffe (Robert): Can I ask you, Kristopher, where do you find this energy?

M. Knowles (Kristopher): Ah, I don't know, I can't say. But what's getting me through this walk is all the people that I'm meeting, all the people that I've received... or family members that have passed away in donating their... daughters' and or brothers' organs and that's what keeps me going.
I met this one family in North Bay. The one day, the house was on fire. So the family's house was on fire, so they sent a baby-sitter with their two kids - 10 and 7 - to the beach, and the youngest one, 7 year old, drowned as... when their house was on fire. So, he donated his organs. He saved 8 people's lives because of that, and because of that issue, that's what's keeping us going, that's what's making us get through day by day. And stuff like and stories like that make us keep on going.

M. Cusano: Bien. Avant de passer à Kristopher une dernière parole, vous avez souligné qu'à ma gauche vous avez quelqu'un que certainement vous avez connu, M. René Chabot, qui a été un des premiers au Québec à avoir, pendant une période d'un an, un coeur totalement artificiel. Alors, je suis sûr que vous aurez l'opportunité par après de lui poser quelques questions.
Mais puisque Kristopher a un agenda extrêmement chargé aujourd'hui... En passant, on lui fait faire une visite du parlement, mais c'est une visite qui est rarement faite: c'est des endroits insolites du parlement. Alors, s'il y en a qui voulaient l'accompagner, je pense que vous allez trouver ça beaucoup plus intéressant.
Alors, pour le mot de la fin de cette conférence, Kristopher, tu veux dire?

M. Knowles (Kristopher): Merci de votre encouragement.

(Fin à 10 h 28)