Mr. Speaker, I am pleased to participate in this very important debate on a motion submitted by my colleague from North Vancouver.
This motion represents an important discussion for the House of Commons and it is relevant for many Canadians. Although we are talking about rare diseases and treatment for such rare diseases, when we add up the numbers, in fact we are talking about a significant proportion of the Canadian population. Well over 10% of Canadians today are affected in one way or another by this issue and by the absence of adequate treatment and drug coverage for those who are affected by this very serious issue.
I want to thank the member for North Vancouver for bringing this issue to this House. It was inspired by his personal experience. His story of his grandchildren is tragic and devastating. We take courage in his ability to take some hope from these dire circumstances to change the world for others, to make this world a better place so that the kind of experience he and his family has had to endure will not have to be repeated by so many over and over again.
All of us bring our personal experiences to this House and they intersect here in the political world. It is here at that intersection where issues are most poignant and where they become relevant in a very deep, personal way for action.
I too bring to this House a personal experience on the issue of rare disorders. I have talked many times in this House about my son, Nicholas, who is now 23 and suffers from a very rare disorder. In fact there are only 11 boys in the world with his particular genetic disability or disorder. It is called band heterotopia, or double cortex syndrome. It causes uncontrollable seizures, profound intellectual disability, and of course many behavioural issues.
We became aware of this when Nick turned three. He started having seizures and he was diagnosed as simply having epilepsy. We were told not to worry, that everything would be okay. As the years passed and the drug trials continued and the tests persisted, we soon became aware that we were dealing with something very difficult. To this day we still struggle with drug therapies to bring his seizures under control. We keep hoping and praying that there will be a discovery that will help his particular situation.
In our case, we have been blessed with a wonderful medical system in Manitoba, with good access to neurologists. Obviously we have tried every drug in the world that exists. We have also used the exceptional drug program to access drugs that were not approved. We continue to be blessed by a system that is sensitive, insofar as it goes to the particular situation facing Nick.
However, we always hope that there will be the resources to find a cure, to find a solution, to find some remedy to help him, just as my colleague from North Vancouver hopes that something can be done to prevent the tragedy he has had to go through with the death of his grandchildren.
My other colleagues bring similar stories to this House. My colleague from Acadie—Bathurst is fighting for a family in his constituency. It is the case of a two year old girl in Paquetville, New Brunswick, suffering from xeroderma pigmentosum, a condition in which she cannot be exposed to sunlight. Cancer development is triggered by sun exposure and she has already recently suffered some new developments pertaining to cancer.
She lives in the dark all the time and can only go out at night after sundown. She requires special windows. She would need a special dome to protect her outside to play normally, and of course this is a very costly method of protection. Her parents have had to leave work to care for her. The family continues to struggle to ensure that this little girl has a future.
My colleague from Windsor—Tecumseh mentioned to me today that Szymon Cajmer, the little boy who is mentioned in the Globe and Mail story, is in his constituency of Windsor--Tecumseh. When this little boy was six years old, he was denied entry into a clinical trial to test the only drug to treat his rare disease because his lungs worked too well. Now at age 11 he suffers from severe hearing loss and easily loses his breath. The drug he did not qualify to receive years ago, idursulfase, has since been approved by Health Canada to treat his disease, Hunter syndrome, but now Szymon cannot obtain the enzyme replacement therapy for a different reason. It is funded in British Columbia and Alberta but not in Ontario.
With this range of personal stories we have a better understanding of the problems facing many Canadians. We need a strategy to help Canadians who are faced with rare disorders.
My colleague from North Vancouver has presented a comprehensive motion that does not prescribe exactly what the federal government ought to do, but recommends that the government consider various steps to ensure that a strategy is put in place. The first recommendation my colleague has made is that there be a strategy, that we define what rare disorders are, that we do what the United States has done at least, which is to give it a word, give it definition, give it meaning, and then develop a strategy to act on those issues.
I commend my colleague for that. I certainly support in general his motion. We can quibble with some of the aspects but that is for us to sort out as we move this along.
It is the responsibility of the federal government to take the wisdom of the experience of the member for North Vancouver and the personal experiences of so many in this House and build on them and come up with solutions. We do not want these rare disabilities and disorders to become a jurisdictional football, as is the case of the family living in Windsor—Tecumseh.
It is wrong that provinces with more wealth and ability to pay for expensive rare drugs can do so while others cannot. We need a national strategy.
The government could immediately recommit itself to a national pharmaceutical strategy which is sitting on a shelf somewhere gathering dust without action and without purpose. We need a minister of health and a Government of Canada that is prepared to get back to the drawing board and recognize that this country needs a national pharmaceutical strategy with a national formulary that would have a specific fund allocated for people suffering from rare diseases as a part of it. Otherwise, it will never be possible to address those particular conditions. They are too specific, too small, too narrow to be part of a common drug formulary. That is clear.
We are not suggesting that every province reinvent the wheel and come up with funds from scarce resources in order to cover these particular rare disabilities. We need a central clearinghouse. We need a place where those families with family members who suffer from rare disabilities, disorders and diseases can have some hope. These families are facing serious challenges in terms of drug coverage. Drugs may not be thoroughly clinically tested, may not be thoroughly without side effects, but might provide people facing these circumstances with some hope that they might be able to enhance the quality of their lives or even add to their lives. The government must recognize that and put a plan in place.
There is no excuse for the government not to recognize the importance of having a national drug coverage plan that would ensure that all Canadians would never have to make the difficult choice between paying for needed drugs or buying food for their family and paying the rent.
There needs to be a planned approach on all fronts. Serious discussions are needed with the brand name drug companies that are still spending very little of their profits on research and development which would help people with rare diseases and would be of significant benefit to Canadians in these circumstances.
We need to convince the drug companies that spending 90% of their budget on marketing and advertising does not make sense. They have to invest that money in helping Canadians, whether it is in terms of rare disorders and disabilities or whether it is in terms of a universal program that would help many across all jurisdictions in this country.
I commend the member for North Vancouver for bringing this motion to the House. I will support him in his efforts. We look forward to strategies and recommendations and courage from the federal government on this issue.