Hon. Robert Thibault (West Nova, Lib.)
Mr. Speaker, I am very pleased to speak to this important bill.
I would like to begin by congratulating the hon. member for North Vancouver for all his work, as well as all the members who gave him their support.
I find the Bloc Québécois' approach to this issue rather unfortunate. We are looking at the issue of rare diseases and how the family members of those afflicted with such diseases often find themselves in serious difficulty. And rather than getting some cooperation from all the parties of this House, it has become a constitutional and federal-provincial issue. There must be some way to come together on this.
Perhaps this bill does nothing to advance the constitutional matters the Bloc Québécois are always talking about. In any case, I do not think it holds them back or is a disadvantage to them in any way.
I hope the members will find the courage to support this bill and support our member for North Vancouver. He has done an enormous amount of work, made some compromises and landed the support of some government members, NDP members and of course his own colleagues for this important bill.
I listened to the member for Halifax. She said a lot of the things I wanted to say, so I will try not to repeat them.
She talked about the investments in weapons of mass destruction as opposed to investments to help people. I remember a friend of mine, Gerald Percy O'Neil. He was at the golf course reading The ChronicleHerald and started swearing his head off. On one page there was an article, and I do not remember the exact amount of money, about $14 million or $15 million having been spent to develop the Jarvik 7 artificial heart to keep people alive while waiting for heart transplants or other treatments. On the next page was an article about an equal amount of money being spent on developing lethal injections to kill healthy people. It is one of the contradictions of our society.
When we look at the motion brought forward by the member for North Vancouver, we have to evaluate a couple of things. We have to step back and think of how our society will be measured by people 200 years from now. It will be done the same way that we have evaluated societies and civilizations that were before us, and that is by the way they treated their minorities and the weakest in society.
If we look at the people who need help, who need all of us to come together to give them some assistance, the victims of rare disorders would be among the first. They are not numerous enough to ask for assistance or have purchasing power. There are not enough to cause research to happen on therapies, drugs and treatments that can help them.
Do not forget that when we encourage research on treatments to help people with rare disorders, it helps all of us. It helps civilization in general because it brings other treatments that can be used by others. Nothing is in isolation in science. Any information we discover, whether DNA research, nerve regeneration and all these types of things we need in these cases, will help all of us and society generally.
I was looking at the definition and rare disorders, which include such conditions as cystic fibrosis, muscular dystrophy, thalassemia, mucopolysaccarides, pulmonary hypertension, Fabry disease, Gaucher's disease, Waldenstrom's anemia, kidney cancer and acromelagy. I will add Alström, as well as spina bifida. We could add to that again and again.
I lost a brother who I never knew. He died shortly after childbirth of a disease for which at that time, the mid 1950s, there was no hope, no chance, no consideration given to survival. We found out later it was encephalitis. Now 99.9% of such cases survive. If the research had been done on those things, my mother would have had another child.
A friend of mine has only one child, who has smooth brain syndrome. I do not know the proper term for that disorder. Because there was a 25% chance that his next child would have the same syndrome, he and his wife chose not to have more children. We are not too far away in the research where the parents can find out, but it requires research. It will happen. The capability is in Canada and internationally, but there has to be payback for this research. It is not in isolation.
Therefore, it requires some assistance from us as a society to purchase the therapies for rare disorders as they become available. There are always ways to negotiate with the producers of the pharmaceuticals or the therapies, reasonable ways.
The member for North Vancouver brought up the case of pulmonary hypertension, for which he is very familiar. He lost his grandson to it, a grandson who was fortunate enough to live longer than expected. It very seldom happens to children. Usually people who are diagnosed with this are a little older. The member's family was able to have him around. I congratulate his father, Durhane, for accepting the position of president of the CORD organization to try to get assistance for other people.
Many people in my community have Alström's within their families. Two of my former co-workers have experienced that disorder. It is prevalent in western Nova Scotia. Some research is being done on the genetics of it at Mount Desert Island in the village of Bar Harbour. When we look at all the genetic work that is being done everywhere, I think at one point we will be able to identify it very early, perhaps in the fetus, and be able to do the DNA treatments that will avoid the consequences of that disease.
We know the same thing is being done for people who suffer from spina bifida and people who suffer from spinal accidents. We do not know how far away we are, but we know the research is coming. We will be able to do the regeneration of nerve cells that will allow them to regain the use of their limbs. We must keep going. If we provide support for these types of rare diseases, there will be a lot of ancillary benefits for many other people as well.
When I look at the question of cystic fibrosis, I am reminded of Dan Nadeau who served as an RCMP officer in my riding for quite some time and is now working in Regina. Dan lost three sons to cystic fibrosis. It would be easy for a person in that position to withdraw from society, to be very discouraged, to lament his loss, but that is not the position that Dan took. Dan volunteers as a volleyball coach with many community organizations and continues to work. He would be the first to stand in line to support the member for North Vancouver so that other families are not struck with this illness.
Maybe 30 years down the line it will be cystic fibrosis. Maybe 20 years it will be pulmonary hypertension, maybe Alström's in 10. Who knows what the next breakthrough will be? We know what we have been able to accomplish with Fabry's disease, which has a huge concentration in Nova Scotia. People in other communities across the country have this disease. Alberta has quite a few cases. Tancook Island in Nova Scotia seems to be the hot bed.
With some assistance from the federal government, working with pharmaceutical manufacturers and the provincial government, we have been able to give quality of life to those people. They are able to continue working. They are able to look forward to a reasonable life expectancy. Without the treatments available they had a very short life expectancy and no quality of life, no ability to work or to raise a family, or the other things that we all take for granted.
I believe that the potential is there if the desire is there. I want to congratulate all members of the House who are supporting this motion. I want to thank the government for having negotiated in good faith with the member for North Vancouver, so that we could come to a compromise resolution.
I also want to thank NORD, the National Organization for Rare Disorders, that was part of the discussions all along. What we are putting forward in the House is not everything the organization wanted, but it understands that this is a step forward. This motion seeks to bring everybody together at the same table to find the long term solutions. It has been a pleasure to speak to this motion. I look forward to voting in favour of it.
Topic: Private Members' Business
Subtopic: Treatment of Rare Disorders