Anne Minh-Thu Quach

[Multiple Sclerosis, November 24th, 2011]

Madam Speaker, I would like to congratulate my Conservative colleague for taking the initiative to move this motion for more information to be provided to those living with multiple sclerosis. We will support this motion.

This motion also gives us the opportunity to talk about multiple sclerosis and the impact this disease has on the lives of thousands of Canadians.

Canada is one of the countries most affected by this disease. In fact, it is estimated that between 55,000 and 75,000 Canadians have this disease. These people hope that science will eventually enable them to heal.

We know that multiple sclerosis is a disease of the central nervous system and that it attacks the myelin sheath, or cover, that protects cells in the central nervous system.

What does this mean for people who have this disease?

Many patients have vision problems, muscle stiffness, loss of balance, extreme fatigue and, on occasion, total paralysis. Some people have to use a wheelchair to get around. We know that there are still many barriers to mobility in our buildings, streets and homes. Some people have to renovate their homes, others have difficulty finding suitable housing, and still others must live in long-term care facilities. Daily life is not easy for those suffering from multiple sclerosis. The people who suffer from this illness know what I am talking about.

However, these people teach us life lessons. Most people who suffer from multiple sclerosis continue to work and lead an active life. Our society should recognize them and better integrate them.

Take the example of Denis Baribeau from Montreal. As is the case for most people suffering from multiple sclerosis, the illness manifested itself early in his life. Mr. Baribeau discovered that he had multiple sclerosis when he was 26 years old. He had just finished university and was preparing to enter the job market.

It is a shock for us and our families to be told by a doctor that we will suffer from a chronic and incurable disease for the rest of our lives. When we lose our physical abilities, we lose them forever. Every flare-up leaves us a little less mobile and has lasting and disabling effects. It is difficult to accept this reality. And yet, people with this illness continue to fight, and to lead as normal a life as possible. Mr. Baribeau continues to work and also to raise our society's awareness about this illness.

However, it is difficult to remain active and have a good quality of life, especially for those who need drugs and cannot afford them. There are medications available that act mainly on the immune system. Some medications slow down the progression of impairment, whereas others help manage symptoms. However, the drugs are often expensive. It can sometimes cost up to $30,000 a year for this treatment. It is beyond the reach of those without a drug insurance plan.

The purpose of the first part of my speech was to help members understand what it is like to live with multiple sclerosis and also to show the urgent need to find solutions.

For years, as the hon. member opposite mentioned, numerous researchers have put all their energy into finding a solution for this disease. One breakthrough that the scientific community feels is significant is chronic cerebrospinal venous insufficiency, or CCSVI. The term was coined by Dr. Paolo Zamboni, a researcher from the University of Ferrare in Italy. He observed that, in some patients with multiple sclerosis, veins in the neck and head are blocked or narrowed and therefore unable to efficiently remove blood from the brain and spinal cord. Phleboplasty was suggested as a potential treatment for patients. It consists of inserting a catheter into a blocked vein and inflating a balloon to dilate the vein. These treatment seems to have had results with certain patients, who said that they have regained some feeling and mobility.

A number of studies are taking place in Canada and elsewhere in the world to confirm the research results. The Multiple Sclerosis Society of Canada, in partnership with its American counterpart, is currently conducting studies.

In addition, the federal government has decided to fund phase I and II clinical trials on CCSVI. The goal is to determine whether there is a link between venous anomalies and multiple sclerosis. Researchers do not yet agree on the link between the CCSVI treatment and multiple sclerosis.

In fact, doctors and the scientific community do not yet have all of the data needed to understand CCSVI and to offer safe, effective treatment to patients. This lack of data means that CCSVI is not yet available in Canada.

Sometimes, patients travel abroad to get treatment without knowing if the method used is reliable and risk-free. The information available in Canada is limited and fragmented. Some studies show a link between venous insufficiency and multiple sclerosis, while others reject that hypothesis.

So, a lot of information is missing and this prevents people from making informed decisions. Moreover, we do not know how many patients have received innovative treatments and how they have reacted to such treatments. Let us also not forget that research protocols, diagnostic procedures and treatments vary from country to country. This lack of national and international standards is a major impediment to the treatment of people suffering from multiple sclerosis.

Yet, it is critical that patients get all the information necessary to make informed decisions. After all, they are the ones who live with MS and they should be well informed. That is why the motion presented by the hon. member opposite is welcome, since it provides that these people should have access to more information. That is extremely useful to patients. Therefore, it is critical that the Conservative government work with scientists to get the most accurate information available for patients and their families.

I should point out that a database project is underway at the Public Health Agency of Canada. The agency is developing a new monitoring system to collect data on the condition of patients, on what is being done in terms of treatments, and on the findings of studies. We hope that this project will be developed quickly and will be based on scientific standards, in order to provide patients with the information they need. That should have been done a long time ago, considering that the treatment was made public in 2009.

I also remind the government of the importance of allowing the public to have access as quickly as possible to scientific data on venous insufficiency. In June, the federal government announced that it would fund clinical trials for phases I and II, but we still do not have any information on the research protocol, the timeframe, or the number of participants. It is also important to remind the government that all phases of the clinical trials must be completed in order to have reliable results. There are four phases and we are currently funding only the first two. We would like to have more details on these trials but, as we know, it is always difficult to get clear answers from this government.

I wish to stress how important it is to focus on the fight against multiple sclerosis. People who suffer from the disease, their families and Canadian society as a whole all have an interest in finding scientific answers to this disease. Let us show leadership. Canadian researchers have all the skills necessary to get results, and we are anxiously waiting for these results.

I thank the hon. member opposite for promoting better access to information. As long as scientists agree among themselves, we will support this motion.

[Multiple Sclerosis, November 24th, 2011]

Madam Speaker, I would like to highlight the very worthy effort that the member opposite has made by moving this motion that addresses the problems with multiple sclerosis, the complexity of the disease and the lack of information that is crucial for treatment.

Since specialists, experts, researchers and scientists do not all agree on the link between CCSVI treatment and multiple sclerosis or on the controversial side of the disease, and since a number of patients are frustrated and are hopeful about this treatment and their recovery, will the government ensure that this process goes through all four phases of clinical trials? The first two phases are currently underway. Will the government ensure that this progresses to the fourth phase and that there is a consensus in the scientific community before this treatment is recommended?

[Health, November 24th, 2011]

Mr. Speaker, this government has not been able to keep its promises on the current health accord. That is not very proactive.

The government promised to be accountable to Canadians on the $40 billion investments in this accord, but eight years later, the situation is far from improved.

Far too many Canadians still have to wait for surgery, others do not have access to home care, and drug insurance coverage is inadequate, to name a few of the problems.

In the negotiations to renew the health accord, will the government show leadership to ensure that Canadians can have the health care they deserve?

[Health, November 24th, 2011]

Mr. Speaker, ever since the Conservatives have been in power, they have been turning a blind eye to the pressing needs in the health care system.

Still today, 5 million Canadians do not have a family doctor. Wait times in emergency rooms are getting longer.

With the negotiations on the 2014 health accord starting this week, the Conservatives have an opportunity to work with the provinces and territories to correct this embarrassing situation. This is a critical accord.

What will this government do to guarantee Canadians real, measurable results to improve our public health care system?

[Copyright Modernization Act, November 24th, 2011]

Mr. Speaker, I want to thank the hon. member for raising this very important point for students. They are getting an education and do not yet have steady, well-paid employment. It is outrageous to have digital locks on the work they access digitally and for them to have to pay to continue benefiting from that material after 30 days. They do not have the means to keep paying for 30 more days. They need affordable, permanent access to the material because their schooling lasts more than 30 days. We have to balance all these complex aspects with respect for the work of the artist, who should be paid fairly.

[Copyright Modernization Act, November 24th, 2011]

Mr. Speaker, I want to thank the hon. member opposite. Yes, we are new, but we have experience and we interact with artists. I am a teacher and I have used material created by artists. I know how important it is, in terms of economic balance, for creation to continue and for the work of the artists to be recognized for what it is worth. They have to be given more funding, not less funding, with a larger share going to corporations, as the bill currently provides.

It is complex and a number of people are feeling trampled on because of this bill. There is something not quite right. Consultations were indeed held on the matter of the digital locks, but the technology has advanced quite a bit since then. Like the Internet, technology has become more digitized in the past few years. There are more and more new technologies. The proposals also have to be new and take into account these new developments.

[Copyright Modernization Act, November 24th, 2011]

Mr. Speaker, I am very pleased to rise today to address Bill C-11, the Copyright Modernization Act.

I join all my colleagues in the House in stressing the fact that this bill, as worded, poses a number of problems for our artists and for society as a whole.

We all agree that copyright modernization is long overdue, considering that the technology has been modernized. In fact, because these technologies and the Internet are evolving very rapidly, it is difficult to craft a bill that can adjust to all these changes. However, we need to take our time for that very same reason, to ensure that we do things right, that we consult with experts and that we use a logical approach considering all the available options. This is why it is necessary to make a number of changes and to strike a better balance between the rights of creators, who deserve to be compensated fairly for their work, and the rights of consumers, who want to have access to this content at a reasonable cost. The bill must also promote market innovations, instead of just creating obstacles.

The problematic clauses of the bill include, of course, those that deal with digital locks; they have been mentioned repeatedly since the legislation was first introduced. These digital locks pose problems in the educational sector but, more importantly, they deprive creators of a major source of income. Under the bill in its current form, they would take precedence over all other rights, including those of journalists and students who, for obvious reasons, should have reasonable and affordable access to this material.

My colleagues have all raised specific cases where well intentioned Canadians or students—ordinary Canadians as members opposite would say—find themselves in violation of the law because they made a personal copy of the content that they bought, or because they did not destroy class material that they have had in their possession for more than 30 days.

I have difficulty thinking of my students as criminals, when they are respectful adolescents who keep their course material in order to refer to it later and to learn more. I graduated from university more than seven years ago and still keep documents because I need to refer to them to plan courses for my students. I would be liable to imprisonment because I did not destroy these documents. I would be punished more severely than someone who assaults a child. Is this not a double standard? Is it not somewhat illogical? I think it is.

Having said that, based on what the government has been saying for a few weeks, I am convinced that it would not bring forward a bill that would make criminals of ordinary Canadians. I hope that the government will take a logical, consistent, thoughtful and critical approach to this bill. The NDP is prepared to work with our Conservative colleagues in making amendments to improve this bill.

Many of my colleagues have discussed the problems related to education and course material and therefore I will address the consequences of this bill and the digital locks, which affects the income of creators.

Canada's cultural heritage is very rich. As my colleague mentioned earlier, artists and creators teach us, inspire us and pass on values, especially among our youth, important values such as tolerance, open-mindedness, social engagement, a sense of community and many other values. In addition, Canadian culture helps us to develop our cultural identity and pride.

In addition to this social contribution, creators make an important economic contribution. Despite modest investments of $7.9 billion in culture by all levels of government, the cultural sector generated more than $25 billion in tax revenue in 2007-08. The Canadian Arts Coalition, which met with several MPs, says that every dollar invested in culture generates more than three dollars in the arts. It is really a profitable investment for our economy.

In addition, this sector is directly responsible for the creation of many quality jobs. There are the people in box offices, radio and television hosts, journalists, computer specialists, people who work on sets and backstage and the artists themselves, just to name a few. There are also all those who publish, who build musical instruments and so on. One does not need to be a genius to understand that investments in the cultural sector help our economy. Artists also contribute in the health sector through art therapy.

Any legislation that modernizes the Copyright Act absolutely must emphasize and even encourage these contributions. Unfortunately, for most people, a career as an artist is not a high-quality job since the average salary of artists in Canada is approximately $12,900 a year. I have several friends who are artists and even a brother who is a musician and who is currently travelling around the world. He is an ambassador for Canada on the international stage. Committed and passionate Canadians who work hard to promote their creations and who want to inspire and teach people are important in our society. They are role models for young people and ambassadors for Canada. However, they live from paycheque to paycheque and can barely make ends meet. Often, they cannot even cultivate their art because they have to work full time so that they can explore their passion and improve. Rather than remedying this situation and celebrating the considerable contribution of the cultural sector, this bill will once again take millions of dollars away from artists and creators and benefit large corporations.

Instead, we should be seeking to create new ways for artists to receive fair compensation. Adding digital locks will actually have the opposite effect. It limits the market. That is not necessary since the provisions on digital locks proposed in this bill will be among the strictest in the world. As we have said many times, this is creating all kinds of problems in the United States. Why not learn from our neighbours' experience and try to do something different and better?

With a little bit of thought, we could make this clause less strict and more reasonable so that the approach is more balanced and our creators would receive more support. It is important to protect the income sources of the creators who work hard and do not receive the recognition and encouragement they deserve, because of this type of bill and all the cuts they have experienced.

Clearly, this is a complex bill. We must find a way to manage the interests of consumers on the one hand, while protecting and supporting Canada's cultural sector on the other hand. This bill also needs to be able to respond to the rapidly evolving nature of technology and the Internet. It is very difficult to anticipate all of that. In its current version, the bill does not even meet today's needs. As my colleagues have pointed out, representatives of the cultural sector and experts are criticizing the bill. Experts appeared before the committee, but the Conservatives chose to ignore their recommendations and suggestions. Why bother calling in experts if what they have to say is completely ignored?

In light of the recent limits on debate in this House and this government's systematic refusal to listen to experts, I am very worried. I think the complexity of this bill warrants a careful review and reasoned amendments. I therefore call on the Conservatives to listen to the experts and work with the NDP so that we can make constructive amendments to this bill, which will have an impact on an entire generation and many more to come.

What message does this bill send to society, to the next generation of artists in the making, to those in our ridings, in our regions, to the people who are trying to support the local and national economy, to those whose work is showcased internationally? Many groups from Montreal, for instance, travel internationally and have boosted Canada's reputation. What will happen to those entrepreneurs?

We need to educate people, but this government has a double standard. It is not setting a very good example. This bill needs to be amended in order to move forward. We need to take the time to sit down, discuss this again and think about it very carefully.

[Health, November 22nd, 2011]

Mr. Speaker, we still have not been given an answer. Once again, the government has missed the boat.

The Auditor General said that Health Canada does not have a uniform mechanism for monitoring clinical trials of prescription drugs for the most vulnerable, such as children. Other countries receive industry data on adverse drug reactions in children. However, the Conservatives have not bothered with this requirement, which would protect Canadians' health. That is irresponsible.

When will the Minister of Health require pharmaceutical companies to disclose this vital information to protect children who depend on these drugs?

[November 21st, 2011]

Mr. Speaker, I would like to thank the hon. member for answering my question and trying to shed some light on this. However, this is a new Parliament this year. The Minister of Health could still have decided to give the Standing Committee on Health the opportunity to review the targets and see whether they had been met, or she could have even created a new committee. It is important for people to know where to invest and where their money is going. This also would have allowed us to hear from witnesses to get an update on the current situation.

Of course, it is interesting to read a report, but the quality of the information is not the same as when expert witnesses come and give us the information and we can discuss the situation with them and ask them more specific questions. Certainly, it is important to get an update.

I will repeat my question. Could the minister not have given the authority to a democratic institution?

[November 21st, 2011]

Mr. Speaker, last June, I asked the Minister of Health to explain why, in the last session of Parliament, she asked the Senate to review the 2004 accord when the Senate is an undemocratic institution that is not accountable to anyone. She could have asked the Standing Committee on Health, which is made up of elected members of Parliament who are accountable to Canadians, to conduct the review. The committee is an far more democratic institution and is committed to analyzing the investment of public funds.

Canadians have a right to know where their money is going, what is being done with it, if it is being used wisely and whether their investments are being monitored. The federal government has a duty to enforce the Canada Health Act, which includes the following five principles: accessibility, universality, portability, public administration and comprehensiveness.

The provinces had to meet targets and achieve results in order to respect the agreement between them and the federal government, so that the federal government would continue to invest 6%, as agreed to by the Minister of Health.

The targets were, for example, to reduce wait times in the emergency rooms, to increase the number of professional staff, doctors and nurses, and to improve home care. There was also the issue of providing more care in the north and improving public health management.

Such were the targets and there were 67 to 70 measurable indicators. Some eight years later, there is still no news on what has happened since 2004. As we prepare the new 2014 accord, we might want to know what improvements there have been, if any, and in what areas of health we have to increase our efforts.

Why did the Minister of Health not show more leadership? It was her decision to choose who would review this accord. Why did she choose the Senate? What does the government have to hide?

This totally lacks transparency, since we have no idea or indication what is being discussed. We have no access to the witnesses and experts who could provide us with information, as this belongs to the Senate.

Again, why was there no leadership on this issue and why was the mandate not given to a democratic institution, to the members of Parliament elected by the public?