House of Commons Hansard #89 of the 39th Parliament, 2nd Session. (The original version is on Parliament's site.) The word of the day was application.


Nuclear Liability and Compensation Act
Government Orders

6:05 p.m.

Some hon. members


Nuclear Liability and Compensation Act
Government Orders

6:05 p.m.


The Speaker Peter Milliken

In my opinion the yeas have it.

And five or more members having risen:

(The House divided on the motion, which was agreed to on the following division:)

Vote #105

Nuclear Liability and Compensation Act
Government Orders

6:10 p.m.


Le Président Peter Milliken

I declare the motion carried.

It being 6:13 p.m., the House will now proceed to the consideration of private members' business as listed on today's order paper.

The House resumed from April 14 consideration of the motion.

Treatment of Rare Disorders
Private Members' Business

6:15 p.m.


Gary Goodyear Cambridge, ON

Mr. Speaker, I certainly appreciate the remainder of my time to speak to this important motion. As I mentioned before, I am always honoured to stand in the House to speak on behalf of the people of Cambridge and North Dumfries.

The government understands the seriousness of the issues faced by Canadians who suffer rare diseases. We have taken action on these issues for this vulnerable population of Canadians and we have every intention of continuing to do so. This government recognizes the challenges facing Canadians who suffer from rare diseases, including limited treatment options, high costs and uneven approaches to reimbursement by the provinces and territories. We have worked with the member for North Vancouver and we appreciate the cooperation of the member. I am pleased today to move the following amendment. I move:

That the motion be amended by deleting all the words after “That” and substituting the words:

“in the opinion of the House, the government should respond specifically to the challenges faced by Canadians with rare diseases and disorders, in collaboration with provinces and territories (P/Ts) and stakeholders by:

(a) examining options for defining serious rare diseases;

(b) examining options, including the possible creation of a specific fund, to improve access to rare disease treatments, building on the recent work undertaken by federal and provincial/territorial governments under the National Pharmaceuticals Strategy;

(c) considering the establishment of a multi-stakeholder advisory body, including the Common Drug Review, treaters and patients, to recommend treatment access for life-threatening or serious rare disorders, based on scientific standards and social values;

(d) exploring options to consider national and international expert advice in developing criteria for treating patients based on scientific evidence and patient impact, and to link these activities with ongoing post-market monitoring of real world drug safety and effectiveness;

(e) considering options to encourage research and development into treatments for rare diseases and other unmet health needs;

(f) considering internationally accepted standards for conduct of clinical trials in rare disorders appropriate for the challenges inherent to very small patient populations;

(g) considering how Health Canada's work on a progressive licensing framework could provide appropriate support to the design of clinical trials for very small patient populations and appropriate review of evidence submitted from these trials; and,

(h) reporting the progress accomplished to the House within 12 months”.

Rare diseases mean just that. They are rare. That is the good news. Very few people get them--

Treatment of Rare Disorders
Private Members' Business

6:15 p.m.


The Acting Speaker Andrew Scheer

It is my duty to inform hon. members that pursuant to Standing Order 93, no amendment may be proposed to a private member's motion or to the motion for second reading of a private member's bill unless the sponsor of the item indicates his or her consent. Therefore, I ask the hon. member for North Vancouver if he consents to this amendment being moved.

Treatment of Rare Disorders
Private Members' Business

6:15 p.m.


Don Bell North Vancouver, BC

Mr. Speaker, yes, I do consent. I am in agreement with the amendment.

Treatment of Rare Disorders
Private Members' Business

6:20 p.m.


The Acting Speaker Andrew Scheer

The debate is on the amendment.

The hon. member for Compton—Stanstead.

Treatment of Rare Disorders
Private Members' Business

6:20 p.m.


France Bonsant Compton—Stanstead, QC

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.

Treatment of Rare Disorders
Private Members' Business

6:25 p.m.


Alexa McDonough Halifax, NS

Mr. Speaker, I welcome the opportunity this evening to participate in the debate on the private member's Motion No. 426 which addresses the very complex issue of rare diseases and disorders and the toll it takes on the lives of an untold number of Canadian.

It may seem like something of an oxymoron to say that because, at first glance, a person might think that if the diseases and disorders are so very rare then how can it be that so many people's lives are affected. The reality is that there is a vast array of rare diseases and uncommon disorders that afflict the lives of a great many Canadians and, in many cases, cost them their lives, but the number of Canadians affected by any one of those rare disorders or rare diseases is relatively small.

That poses some very serious challenges for the individuals who are suffering from the effects of those rare disorders and diseases, for their families and for the health care system.

I want to say at the outset how much I admire the leadership that has been shown by the member for North Vancouver, not only in bringing this issue to the attention of parliamentarians and educating us, through a variety of means, about the real impact of the current inadequacy of our health care system to respond to this situation, but for going so much further than that, so much further than just making us aware.

I am one of many members of Parliament who was privileged to be in attendance at an awareness event that was co-sponsored with the Speaker of the House. I want to express my appreciation to the Speaker for having shown an interest and a commitment to support the efforts of the member for North Vancouver when he hosted an event here on Parliament Hill. Some of the good work that does get done is not often evident to the public. The member and members of his family shared the devastating story of losing first one and then a second grandchild to a rare disease for which there was no treatment available that might have saved or prolonged the life of those grandchildren.

I want to express my deep admiration for the courage and persistence the member has shown in bringing this issue forward. To state the obvious, the member, having done this, will never bring back his loved ones but I think it has been evident that this is a labour of love and it is not only in support of his son and daughter-in-law but also other families who are struggling with similar circumstances. I am sure it cannot be easy to again and again muster the energy, the inner resources and the courage to share that story because it is so devastating.

Not only did the member himself but his son, who suffered the loss of his two young children to a rare disease, stood among parliamentarians to tell this very difficult story about such a deep loss to him, his wife and the extended family.

However, the efforts did not stop there. The member serves as president, or certainly did, although I am not sure if he still does, of an organization formed to bring this fight to life, an organization known as CORD, the Canadian Organization for Rare Diseases.

This has been a persistent information campaign and advocacy group to bring to the light of day, to bring to the attention of Canadians, to lobby parliamentarians and to say that our current government's response to the plight of so many people is simply inadequate.

Some might ask, how can we expect to develop the kind of resources that would be needed, very expensive treatment regimes and pharmaceuticals, when only small numbers of people are afflicted by each of these different disorders?

If one closely examines the motion brought forward by the member, some very practical considerations are contained in it. I do not have time to go through them in detail, but they seem eminently reasonable and practical. There is nothing unrealistic about what has been put forward. I think that is why there has been absolutely no hesitation about members coming forward to indicate their support.

The fact is we are one of the few remaining countries in the developed world that does not have a comprehensive policy to address this very challenging problem. We do not have an official definition of a rare disorder. Nor do we have an orphan drug policy. There is no reason for us not to move on this. I hope all members will see the wisdom of supporting the motion.

I know the member from Quebec has raised a jurisdictional question. It is really a question about what often arises in regard to Quebec's handling of similar social-economic policies. I hope this would not in any way, shape or form be used as a reason not to achieve unanimous consent on the motion.

Although there has been some compromise, some elements lost in the motion as a result of the government indicating that it would support some amendments, it is nevertheless some kind of progress that we can move forward to put in place some very specific recommendations. It is unfortunate that the government, as I understand it, has insisted that the requirement for it to come forward with report within six months not be contained in the motion. Instead the government has indicated 12 months is the only timeframe to which it is prepared to commit. At least it gets us on a path to begin to look seriously at what kinds of policies and programs need to be put in place to deal with this.

When I first began to become sensitized to the devastation of the rare diseases and disorders, which have such an impact on families, I knew only second-hand of some of the persons who were struggling with such disorders. As chance would have it, during the last year, I had a very close family member who was stricken initially by a completely undiagnosed illness. It went on for a considerable period of time. It turned out to be an extremely rare disorder. The good news is there is progress in dealing with such disorders.

One very important thing in the motion is the recognition that there needs to be accommodations for the kinds of clinical trials that would be conducted and what the regulations to govern those trials would be. We are talking small populations, and one has to accommodate that reality.

It is too easy to say that we cannot really do that, that this is very expensive. An appeal was appropriately made to the intended universality of the Canada Health Act that because we had small numbers afflicted by these various rare disorders and diseases, that did not mean people should not expect to be covered by the intended provisions of the act. Regardless of where one lives and how much money one has or one's family has, people should receive as close to equal treatment as is possible.

I am very pleased we are now looking at this motion, which I hope will be universally endorsed. With the modern breakthroughs in scientific advances and modern research, this is an area in which there is no question we can make enormous gains and have a huge impact on the lives of people who are afflicted by such diseases and disorders, on their families and on the health care system to apply these new breakthroughs in knowledge.

The most shocking and obscene thing is the amount of money spent on using new information and technology to develop new weaponry, weapons of war, for example, as if this is some kind of a step in the direction of civilization. We need to recognize that we have to harness new knowledge and new research advances for the betterment of humankind. What better example could we have than the one now before us, as a result of the hard work by the member for North Vancouver. He would be the first to—

Treatment of Rare Disorders
Private Members' Business

6:40 p.m.


The Acting Speaker Andrew Scheer

I will have to stop the hon. member for Halifax since she has gone over her time.

The hon. member for West Nova.

Treatment of Rare Disorders
Private Members' Business

May 6th, 2008 / 6:40 p.m.


Robert Thibault West Nova, NS

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.

Treatment of Rare Disorders
Private Members' Business

6:50 p.m.

Charleswood—St. James—Assiniboia


Steven Fletcher Parliamentary Secretary for Health

Mr. Speaker, I would like to say that this government echoes the member for North Vancouver in his compassion for Canadians suffering from rare diseases.

This member has been touched personally by a rare disease in his family and has brought that real-life experience to the House in a way that I have not seen any other member do in the short time I have been here. The member for North Vancouver has approached this issue with passion, compassion, empathy, understanding, and with the knowledge of how to get things done in the House of Commons.

In a time where we are in a minority Parliament and a lot of people talk about the toing and froing and the partisanship of the House, it is, I think, a testament to the member for North Vancouver that he was willing to work with other members of the House, including myself, to come up with wording that would have an effect in the long term, wording that would actually mean something a year from now or five years from now, and wording that would help people with rare diseases.

This would not have happened without the intervention of the member for North Vancouver and his motion and, may I say, it would not have happened without the courage of his family, his son and his grandchildren.

As we move forward with this motion, I look forward to seeing many positive results because rare diseases are generally lifelong conditions, resulting in a lifetime of struggles for patients and their families.

Given the limited amount of information about these diseases, some of which may affect maybe up to three people in Canada, very small numbers, getting diagnosed is even a challenge and once diagnosed, there are often limited treatment options, which are often very expensive.

Once a drug is licensed, decisions are needed regarding whether it would be paid for publicly while patients wait for access to therapy. Manoeuvring through our health care system can be daunting, particularly when dealing with the day-to-day challenges of a life-threatening illness or disease.

I would also like to call to the members' attention the role of drug manufacturers that are setting extraordinarily high prices for these drugs, both in Canada and internationally.

I understand that treatment can run upwards to $1 million per year, per patient, in some cases. Clearly, no single person can afford these costs, leaving governments to determine whether and how these drugs should be publicly reimbursed.

This government takes this issue very seriously. As I mentioned, I have worked very closely with the member for North Vancouver to make several amendments to the proposed motion. These amendments would allow us to explore a wider range of options for addressing the challenges posed by rare diseases.

However, we recognize that we cannot respond to this issue alone. Patients and caregivers, health care providers, provinces and territories, medical researchers and the public, which ultimately foots the bill for treatment, all have roles to play in responding to these challenges facing Canadians suffering from rare diseases. The amendments we have proposed reflect the diverse and essential roles of each stakeholder.

Our amendments highlight the need to work with the provinces and territories, in particular. They have an important role in delivering health care benefits to their residents, including determining public drug coverage for their residents. As such, they are faced with the majority of difficult decisions regarding whether and how they will fund treatments for rare diseases. These decisions are complex, not only because of the sheer cost of the drugs, but because there is often limited evidence on how they work.

The common drug review was created to assist jurisdictions with these challenges and the reimbursement costs. It plays an important role by reviewing drugs for clinical and cost effectiveness, and providing evidence-based recommendations to drug plans on whether and under what conditions a drug should be publicly reimbursed.

I should note that the Standing Committee on Health recently wrote a report on the common drug review. In the response we committed to continuing discussions with the provinces and territories with respect to how the common drug review looks at drugs for rare diseases. Our amendments therefore reflect the fact that the common drug review needs to be included in any considerations of an advisory body for rare diseases.

We have also further proposed that the motion be amended to examine options to improve access to rare disease treatments by building on recent work undertaken with provincial and territorial governments under the national pharmaceutical strategy.

The government believes that there are a range of possibilities to be examined with the provinces, territories and other stakeholders. Drugs for rare diseases raise a host of complex issues that are by no means unique to Canada. Other countries are grappling with the same problems and struggling to find appropriate, sustainable and ethical solutions. Even defining what counts as a rare disease is problematic as there is no international consensus on it.

Our amendments therefore reflect the need for more consideration before deciding on a single definition. We also need to be realistic with our timelines for meaningful progress on these issues recognizing the amount of work that needs to be done and the range of stakeholders involved. It is for this reason why our amendments propose extending the timeline to 12 months.

There is evidently much more work to be done with the stakeholders and with governments here in Canada and abroad. We need to ensure that we have the right approach with regard to research, regulations, and the right approach to reimbursement. We need to ensure that the processes by which we make decisions are transparent, evidence-based, rigorous, and take into account the patients' needs. We need to ensure that all parties, federal, provincial and territorial governments, researchers and health care providers have the right tools with which to make these decisions.

I believe that the motion that has been proposed with the amendments is another step in the right direction. I want to say that it has been a pleasure working with the member for North Vancouver. I have had the opportunity to know the member on a personal level and I am really touched on how he has approached this issue, and the impact that this issue has had on his family. I am sure there are many families that can relate to the member for North Vancouver's very difficult challenges, but together I think the House is making a statement, that progress can be made, and it will be made and the lives of Canadians will be better for it.

Treatment of Rare Disorders
Private Members' Business

6:55 p.m.


The Acting Speaker Andrew Scheer

Is the House ready for the question?