Mr. Speaker, I am pleased to speak today to the motion of my colleague from North Vancouver. I know that his family has been touched by a death related to a rare disease and I sympathize with him and his loved ones.
I have been following the development of treatments for rare diseases for a number of years now. I became aware of this issue when I learned that a number of people in my riding, in the Eastern Townships, have these types of diseases.
Every day, these patients are fighting Pompe's disease, Fabry disease, Hurler's syndrome, or Gaucher disease, to name a few. If you are like me, those diseases do not sound familiar at all, but they have a terrible impact on the physical and emotional health of those afflicted.
I first encountered this issue not because it was a current issue—it still is not. As their name suggests, these are rare diseases and they affect only a few people. Today's motion talks about a disease that affects less than one person in 2,000. There are therefore few known cases of such diseases. These diseases have long been neglected by our health care system, by government action and by the biomedical field.
People with rare diseases are often forgotten and left to fend for themselves. From a biomedical standpoint, it is more cost-effective to conduct research on a certain type of cancer than on a rare disease. However, to date, roughly 6,000 to 8,000 diseases are considered rare in the world. In the past 25 to 30 years, pharmaceutical companies that focus their research only on rare diseases have begun appearing. These companies have made major advances. More than 200 drugs and a number of natural products have been identified.
In the entire process, once a drug has been approved, it is not access to it that is prohibitive to patients, but the cost. In my riding, when I looked into rare diseases I found out that treatment for these diseases costs a small fortune. I am talking about $250,000 a year for replacement enzymes to treat Fabry disease or close to $400,000 a year to treat Hurler's syndrome.
You and I, Mr. Speaker, who earn very good salaries, would not have enough money to pay for such expenses. For people who have to stop working to treat their disease, it is impossible to pay for such an essential need.
I am certain I will be told that, in Quebec, drug plans are mandatory and coverage can be either public or private. That is the problem. Although a drug has been approved by Health Canada, it is not automatically covered by drug plans. In Quebec, several drugs are not covered by the Régie de l'assurance maladie.
At present, some patients can take advantage of pilot projects run by the Government of Quebec whereas others benefit from the goodwill of pharmaceutical companies that provide the drugs for free for a certain period of time.
Things are difficult enough when you are sick. Just imagine if you had a rare illness. There are few doctors specializing in rare diseases and the drugs that help cost more in one year than what some individuals earn in a lifetime.
I would add a third concern, that of distance. At least it is a very concrete concern for patients from the Eastern Townships. Some have to travel almost one hour from Stanstead, Victoriaville or even Lac-Mégantic to receive specialized care at the Centre hospitalier universitaire in Sherbrooke.
That is what a patient suffering from an orphan illness has to deal with provided drugs exist to treat the illness.
I would also like to point out that, in November 2005, the federal health department and Quebec ministry of health initiated talks on a national orphan drug program. This program was to be introduced while respecting Quebec's jurisdiction.
Unfortunately for the patients who are waiting for such a program, the 2005-06 federal election and the arrival of a new government considerably delayed this agreement from moving forward. Two and a half years later, the agreement still is not signed. I can easily explain why.
It is all because the Conservatives' open federalism is nothing but smoke and mirrors. Before signing an agreement on rare diseases, the current government wants to impose its conditions, which is not acceptable to Quebec.
Today's motion still does not respect the Quebec nation's jurisdiction over heath matters. If Canada wants to create a national fund for rare diseases, then it can go right ahead.
The Quebec nation must be able to opt out of such a strategy and receive its share of the funding. It is not the federal government's place to tell Quebec where to invest in its own areas of jurisdiction.
In a letter I received on April 11 from the Portail québécois des maladies génétiques orphelines, the organization stated that provision B of this motion should be changed to respect provincial areas of jurisdiction. This letter even mentioned that one option would be to transfer the amounts of money to the provinces, based on the number of patients affected.
And, as you know, February 29 was the first International Rare Disease Day. CORD—Canadian Organization for Rare Disorders—was on Parliament Hill to raise awareness amongst members of Parliament about rare diseases and to promote the Chance for Life Fund. That day, I met a doctor from my constituency who is involved with both the Portail québécois des maladies génétiques orphelines and CORD. This devoted woman wants to see a fund equivalent to 2% of the total public drug expenditure budget established for rare diseases, echoing the motion from the member for North Vancouver. She understands that this could be problematic for Quebec, and she will respect the Bloc's position.
As you now know, the Bloc Québécois is in favour of the member for North Vancouver's motion in principle. However, we have asked for the motion to be amended to take Quebec's system into account and to clarify the implications of the motion on our system. Quebec does not participate in the federal drug plan, and we would like to see that fact recognized in the motion. As long as that recognition is not there and the motion is not amended accordingly, the Bloc cannot support the motion as it stands.