HEAL Committee Meeting

37th PARLIAMENT, 2nd SESSION

Standing Committee on Health

EVIDENCE

CONTENTS

Monday, March 17, 2003

¹

1535

The Chair (Ms. Bonnie Brown (Oakville, Lib.))

Dr. Martin Schechter (National Director / Canada Research Chair in HIV/AIDS and Urban Population Health, Canadian HIV Trials Network)

¹

1540

¹

1545

The Chair

Ms. Louise Binder (Chair, Canadian Treatment Action Council / Voices of Positive Women)

¹

1550

¹

1555

º

1600

The Chair

Ms. Sheena Sargent (Education Programs Coordinator, YouthCo AIDS Society)

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1605

º

1610

The Chair

Mr. Rob Merrifield (Yellowhead, Canadian Alliance)

Dr. Martin Schechter

Mr. Rob Merrifield

Ms. Louise Binder

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1615

Mr. Rob Merrifield

Ms. Louise Binder

Mr. Rob Merrifield

Dr. Martin Schechter

Mr. Rob Merrifield

Ms. Sheena Sargent

Mr. Rob Merrifield

Ms. Sheena Sargent

Dr. Martin Schechter

Mr. Rob Merrifield

Ms. Louise Binder

Mr. Rob Merrifield

Ms. Louise Binder

Mr. Rob Merrifield

Dr. Martin Schechter

Mr. Rob Merrifield

Dr. Martin Schechter

Mr. Rob Merrifield

The Chair

Mr. Réal Ménard (Hochelaga—Maisonneuve, BQ)

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1620

Dr Martin Schechter

Ms. Louise Binder

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1625

Mr. Réal Ménard

Dr. Martin Schechter

The Chair

Ms. Hedy Fry (Vancouver Centre, Lib.)

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1630

Dr. Martin Schechter

Ms. Louise Binder

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1635

The Chair

Ms. Carolyn Bennett (St. Paul's, Lib.)

Dr. Martin Schechter

Ms. Carolyn Bennett

Dr. Martin Schechter

Ms. Carolyn Bennett

Dr. Martin Schechter

Ms. Carolyn Bennett

Dr. Martin Schechter

Ms. Carolyn Bennett

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1640

Dr. Martin Schechter

Ms. Carolyn Bennett

Dr. Martin Schechter

Ms. Carolyn Bennett

Dr. Martin Schechter

Ms. Louise Binder

Ms. Carolyn Bennett

Ms. Sheena Sargent

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1645

The Chair

Dr. Martin Schechter

The Chair

Dr. Martin Schechter

The Chair

Mrs. Carol Skelton (Saskatoon—Rosetown—Biggar, Canadian Alliance)

Ms. Louise Binder

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1650

Mrs. Carol Skelton

Ms. Louise Binder

Mrs. Carol Skelton

Ms. Sheena Sargent

Mrs. Carol Skelton

Ms. Louise Binder

Mrs. Carol Skelton

Ms. Sheena Sargent

Mrs. Carol Skelton

The Chair

Ms. Hélène Scherrer (Louis-Hébert, Lib.)

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1655

The Chair

Ms. Hélène Scherrer

Dr. Martin Schechter

Ms. Sheena Sargent

Ms. Hélène Scherrer

The Chair

Mr. Réal Ménard

»

1700

Dr. Martin Schechter

Ms. Louise Binder

Mr. Réal Ménard

Ms. Louise Binder

Ms. Carolyn Bennett

Ms. Louise Binder

»

1705

The Chair

Ms. Hedy Fry

Dr. Martin Schechter

»

1710

The Chair

Ms. Hedy Fry

Dr. Martin Schechter

The Chair

Mr. Rob Merrifield

Dr. Martin Schechter

Mr. Rob Merrifield

»

1715

Dr. Martin Schechter

Mr. Rob Merrifield

Dr. Martin Schechter

Mr. Rob Merrifield

The Chair

Ms. Carolyn Bennett

Ms. Louise Binder

The Chair

»

1720

Dr. Martin Schechter

The Chair

Dr. Martin Schechter

The Chair

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CANADA

Standing Committee on Health

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NUMBER 024

l

2nd SESSION

l

37th PARLIAMENT

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EVIDENCE

Monday, March 17, 2003

[Recorded by Electronic Apparatus]

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[English]

    The Chair (Ms. Bonnie Brown (Oakville, Lib.)): Good afternoon, ladies and gentlemen. It is my pleasure to call to order this meeting of the health committee and to welcome people from the HIV/AIDS community. We look forward to hearing your comments.

    We'll begin with Dr. Martin Schechter, the national director and the Canada research chair in HIV/AIDS and urban population health.

    Dr. Schechter.

    Dr. Martin Schechter (National Director / Canada Research Chair in HIV/AIDS and Urban Population Health, Canadian HIV Trials Network): Thank you, Madam Chairperson. It's a great privilege for me and my colleagues to be here. We feel very grateful for having been offered the time to speak with the committee.

    We are here to discuss an issue that we believe is of great urgency for Canada, and that is the situation of HIV and AIDS. The bullets we have in the notes for you are the key points I want to make.

    First of all, it's very important for people to realize that unlike any other prevention-causation issue in health, we have a situation where we have a virus that is 100% correlated to the outcome of AIDS. That means every person who gets HIV infection will eventually get immune deficiency and become ill, and no one who does not get HIV infection will ever get AIDS.

    So for every case of HIV we prevent, we absolutely avert a case of AIDS and, with that, the attendant medical costs, the social and personal suffering, as well as the potential for further spread. So the impact of prevention on HIV/AIDS is tremendous.

    Right now, although we can prevent HIV infection and we've done a good job in getting infection rates down from where they were a decade ago, unfortunately we estimate about 4,000 people are getting HIV infection each and every year. It's imperative we do our best to get the infection rate to zero if possible.

    We are dealing with a federal strategy that was set with a funding level of $42.2 million in 1993. When the Liberal Party was in opposition they criticized that number as being too low and thought the number should be higher, but in fighting the deficit, they have been unable to address that funding level since 1993. So for 10 years our battle against HIV/AIDS has been at a fixed level and we are facing greater and greater challenges.

    Right now, there are an estimated 54,000 people in Canada with HIV infection, and that's probably low, because there are probably 10,000 or 20,000 more people who have the early stages of infection, have not been tested, and don't know it. When the federal funding level of $42.2 million was set, there were only 30,000 infected people in Canada, so it has almost doubled, yet we're still operating at the budget of 10 years ago.

    What's worse is that the epidemic has become much more complicated and much more of a challenge. The people who are becoming infected are harder-to-reach people in Canada, under-serviced and marginalized people who need a great deal of targeted prevention and hard work. I'm talking particularly about youth, women in poverty, aboriginal people, inner-city people, street youth, the homeless, people in prison, and so on.

    Now, we have made great progress in the last 10 years on the treatments we can offer people with HIV infection. I know you've all heard of the cocktails that people take, and you'll be hearing today from people who have to take those cocktails. The good news is they have made a dramatic improvement in the quality of life for people with HIV infection. People who were once at death's door have become productive again, have regained their full life.

    Unfortunately, these cocktails are very complicated and have terrible side effects, and increasingly the virus becomes resistant to the drugs we have to offer. So we are coming up against what I would call the end of the honeymoon of drug cocktails, and unless we're able to get new drugs in place, we are facing people who will increasingly be failed by the medications.

    My hospital, St. Paul's Hospital in Vancouver, treats more people with HIV than most other hospitals in the country. In the mid-eighties our census of in-patients who were being treated for their AIDS fell to as low as 10 to 15 patients, and when I left Vancouver there were 41 patients in the hospital. So we have more than double, almost triple the number of in-patients with AIDS we're treating in-hospital right now.

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    You've probably heard that in some parts of Canada we have explosive epidemics. In the downtown east side of Vancouver, where my research is based, we have found infection rates of HIV as high as 40% in some populations. That's the kind of rate you don't see anywhere in the world except in places such as Botswana, South Africa, Zambia, and central and sub-Saharan Africa. So we have developing world rates in Canada. What's even worse is that among those people the hepatitis C rate is more than 90%. The complications of trying to treat someone who has both HIV and hepatitis C exponentially make the problem more difficult because of the complexity of the drugs, their effects on the liver, and the interactions of the drugs. So that challenge is before us.

    Aside from all the social and human reasons we have to renew and reinvigorate our efforts for HIV, there is a very simple economic argument to be made. I told you before that the costs are escalating for treating people with HIV infection. A very well done study about three or four years ago found the cost of each case of AIDS to be approximately $150,000, and that's an old number. I can assure you that if that study were to be conducted today, the number would be much higher. In fact, just today the FDA in the United States approved the newest drug called Fuzeon, which is a new type of drug with a new mechanism of action, and the initial pricing on that drug for one person for a year is $20,000 U.S or $30,000 Canadian. That's more than four times the cost of any single drug we have right now. I can assure you that there are more and better drugs coming, but their costs are substantial.

    When we have 4,000 Canadians becoming infected with HIV, I can tell you with certainty that each year we are adding $600 million to our future medical costs at an absolute minimum. With the changes in these drugs in the future, that number will be much higher. So $600 million is being added each and every year. Is it any wonder that the provinces are coming back to your government and asking for help with the health care system when these kinds of escalating costs are not being prevented?

    We believe that investment now is not only good social policy but sound economic policy. I said this to people 10 years ago, and here we are looking at $600 million in annual costs. I would hate for us to be looking at triple or quadruple those costs and double the number of people with HIV infection 10 years from now. So we're calling on the government to finally act. We understand that there was a time when the fiscal situation did not allow for this 10-year-old budget to be addressed, but we think that now is the time for us to come to grips with this problem.

    I'll just leave you with a couple of things. AIDS is not curable right now. There's a myth out there that it is. The cocktails do an excellent job of keeping people alive and improving their quality of life, but there is no cure. The epidemic is not under control. As I've said, we see it spreading to our most disadvantaged citizens.

    The good news is that with the money that has funded the strategy to date, we have made important progress. We have participated in international research and contributed to some of the treatments that are now available. With our prevention and community efforts, we have probably reduced the infection rate from what would likely have been a much higher number.

    But the bad news is that we have a lot more to do. We can't accept 4,000 Canadians getting HIV infection every year and the potential for further spread from that.

    So we're calling on the government to look at what the budget has been for the last 10 years and to understand the greater challenges we face, such as a greater complexity in the epidemic and a greater burden on people with HIV infection, and to look at the funding level and try to correct what has been stagnant, essentially, for over 10 years.

    Thank you very much.

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    The Chair: Thank you, Dr. Schechter.

    We'll move on to Ms. Louise Binder from the Canadian Treatment Action Council/Voices of Positive Women.

    Ms. Binder.

    Ms. Louise Binder (Chair, Canadian Treatment Action Council / Voices of Positive Women): Good afternoon. I would like to thank you all for inviting us to present to your committee today.

    I'd like to tell you a story that I think illustrates some of the reasons why we must renew and enhance the Canadian strategy on HIV/AIDS in Canada.

    I was diagnosed with HIV just over ten years ago. I was shocked, because I'd been married for more than five years and I'd been with the same partner for more than eight years.

    He and I had divorced three years earlier because he really had become a changed man literally overnight during our marriage, and I never understood why. Then in a moment I understood it all. He had been diagnosed while we were together and had become, as I now was, shocked and depressed. He never told me about his diagnosis while we were together. He's been dead now for more than seven years.

    My family doctor gave me my diagnosis over the telephone. She seemed even more unaware of what to do about the problem than I was. At least I convinced her to hook me up with a hospital that had an infectious disease clinic. I'm one of the lucky ones who lives in a big city that has in fact health care facilities, with specialists who understand this complex disease and how to treat it.

    At the time I was diagnosed, there were no effective treatments, so I was told to put my affairs in order and to prepare to die within two to four years. Fortunately, I found a good support system, and I had enough money, medical coverage, and long-term disability to obtain excellent care and treatment, including a doctor in New York City for a time.

    I told very few people about my situation, because I was afraid of losing my job and my friends and maybe even my family. I was very fortunate that one of my trusted friends found out about an organization called Voices of Positive Women. It's the only AIDS organization in Canada run by HIV-positive women.

    I joined a support group there. I got care referrals and talked about trials of drugs that were available at that time. Nonetheless, my health declined. My immune system fell apart and I was so tired I couldn't do much of anything. At 42 I had to quit work.

    My prospects seemed bleak. Then, suddenly, in 1996 came the big research breakthrough. A new class of anti-retroviral drugs was developed, and with the existing drugs we came to know that these drugs could be effective in combination. I was lucky enough to get this combination therapy early. I had no idea what would happen. I was terrified, because I knew this was chemotherapy for life, but I knew I would die if I did nothing.

    As you see, I didn't die. In fact, I felt well enough after a time to do some volunteer work. This made me feel useful again and part of the world, and this too has helped my health. I spoke publicly about my condition to raise awareness. Very few people, especially women, are able to do so because of the stigma and the potential for harm to their families, especially their children. I decided I had a responsibility to speak out for those people. Some people have left my life as a result of my HIV status, but I prefer to think the loss is theirs.

    In the intervening seven years, I've had a number of medical problems brought on by the powerful drugs I take. The worst, for a time, was something called lipid dystrophy. It's a redistribution of fat in the body that's accompanied by alarming rises in cholesterol and triglycerides in the blood.

    I actually brought you a photograph, which I'll show you later, of the way I looked when I started on this chemotherapy. I gained 30 pounds almost overnight and really was in very grave danger of heart disease.

    Again, I've been lucky. Some of my friends have had heart attacks as a result of these drugs. Some have serious liver and kidney problems, even requiring liver transplant, and recently again we have started to go to funerals.

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    The drugs are not perfect. How could lifetime chemotherapy possibly not take its toll? In fact, what's really distressing is that as a result of the problems with these drugs, a number of women I know have refused to start taking medications or have gone off medications right at the time the infection rate in women is increasing.

    At Voices of Positive Women, where I continue to volunteer, I have seen a rise in membership from 30 to over 650 women. I now see women of every age, socio-economic, cultural, and racial background.

    It is clear that in North America and in Canada, AIDS has moved from outside the gay community to every possible population. We must remember that when this strategy was funded, that was the only population for which we were striving to find strategies. That is really why, in my opinion, we require more funding for the strategy. I know this is not the only disease needing support. I believe there should never be a competition between disease and disability groups. There are some things, however, about this disease that are different from many others.

    The first is that it is entirely preventable if only appropriate approaches are taken. Second, this is an epidemic that is killing productive and young citizens. Third, HIV has much more than a health component to it. It's a virus that attacks those who live in poverty, who are homeless, and who lack education. Fourth, there is a stigma to having this disease that drives it underground.

    I've tried to illustrate some of the ways these characteristics of HIV have touched my life, but I'm only one of 54,000 Canadians now living with this virus. It needs to be stated clearly that Canada's strategy for HIV/AIDS has been an invaluable tool, not only for me but for all Canadians living with HIV and everyone in this country engaged in the fight against this cruel disease.

    Thanks to the strategy, many lives were saved and many people have been treated by drugs developed due to world-class Canadian research. The approaches of the strategy worked very well for the community primarily infected when it came into being--men who have sex with men. That work must continue. We have a new generation of gay men and they must be educated and treated, just as the last generation was.

    What I hope my story has illustrated is that one size does not fit all, particularly for the other populations in the areas of prevention, care, treatment, support, community development, research, and human rights.

    Before I was infected, I had no idea that women were at risk for HIV. For the most part, women still don't realize that. Prevention strategies targeted specifically for this population and each of the other populations must be developed. These other populations, I assure you, remain largely unaware of the terrible risk posed by this disease. We're losing young people, aboriginal people, people from countries where HIV is endemic. Prevention strategies for each of these populations are urgently needed.

    Treatment issues and research for each population are also required. The new treatments and the treatment combinations are complex and must be individualized, and there are many unanswered questions about these treatments. For instance, why do women seem to have such a strong response to anti-viral drugs? Do we get too much drug? How do we integrate drug treatments with aboriginal healing methods? How do we educate people about the new therapies and how to choose a combination that is right for them?

    Treatment and prevention strategies are inseparable. Unless treatment strategies are strong and effective, prevention efforts do not succeed as well as they should. People do not want to be tested if they feel there are not treatments that will either work for them or, because of their population, they will be too afraid to access those treatments because of stigma, marginalization, and discrimination.

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    Much of the care, treatment and support information comes from community groups funded by the strategy. At the time of my diagnosis, I don't know what I would have done without the support of an organization for HIV-positive women. Other populations also need organizations that deal with their particular needs in a culturally sensitive way. Without such groups, we will never reach out to these populations. On the human rights front, there is so much to be done to ensure the end of discrimination and stigma against people with this disease.

    Still, there's reason for optimism. This disease can be eradicated for all populations with appropriate, culturally sensitive strategies in all aspects of HIV work: prevention, research, care, treatment, support, human rights.

    The funding level set in 1993 and frozen since then was never meant to achieve all of this work. In the decade of this deep freeze, the epidemic has become epidemics. Increased funding will enhance our ability to stop this virus from infecting the next generation and to allow people with HIV, regardless of their personal needs, to lead productive lives. I survived partly because of my personal good fortune. This generation will need your help to do the same.

    Thank you.

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    The Chair: Thank you very much, Ms. Binder.

    Our next speaker will be Sheena Sargent, who is the executive director of YouthCo AIDS Society in Vancouver.

    Ms. Sargent.

    Ms. Sheena Sargent (Education Programs Coordinator, YouthCo AIDS Society): Hello, and thank you.

    As for my introduction, my name is Sheena Sargent, and I work with a team of youth in Vancouver, an organization called YouthCo. I've been called before you as a witness today to testify as to the state of HIV and AIDS as it affects youth communities throughout Canada. While I am not presently living with HIV, I am a youth who is directly affected by the virus. I'm here to highlight how far we've come in providing prevention, care, treatment, and support to youth throughout Canada, as well as to shed some light on how far we still have to go.

    After 20 years of HIV/AIDS in Canada, the average age of infection is continuing to drop annually--23 years old, at last report. As of December 31, 2001, a total of 13,029 youths between the ages of 15 and 29 have tested HIV-positive; 620 of these youth have progressed to a diagnosis of AIDS. Since many are affected, and infected, in adolescence and early adulthood, and only much later come forward to be tested, it is likely that these numbers of youth are higher than reports indicate.

    It is often said that HIV thrives in vulnerability. Because of our age, youth is a vulnerable population. It is a time of questioning and forming identities; it is a time of transition, in and out of school systems, homes, responsibilities, and new experiences; it is a time of shouldering the weight of our parents' and community's issues, be they issues related to poverty, drug use, abuse, gender, sexuality, immigration, colonization; it is also a time when many youth are struggling with issues of self-esteem, which can greatly affect decision-making around sex and drug use. We are learning how to say no and how to say yes in safer and healthier ways.

    Youth are also at increased risk of HIV because of the other realities in our lives. Many of us experiment with drugs and alcohol, and many of those who are living with HIV are infected through shared needles. The average age at which youth actually first use needles is 21 years old. Youth are needing support and information as to how to inject safely; however, few in our society are still willing to acknowledge this need as a health issue.

    Street-involved youth are at a higher risk of HIV transmission if they are also dealing with injection drug use, poverty, or histories of physical or sexual abuse. Hungry, poor, and homeless, street-involved youth often put issues of HIV and how to avoid contracting the virus low on their list of concerns. If they are compelled to trade sex for food, money, drugs, or shelter, they lack the negotiating power in sexual relations to be able to protect themselves.

    The numbers of gay male youth who are seroconverting is also continuing to cause alarm. The possible reasons are many: the effects of homophobia, coming out, social isolation, complacency, resignation, and a lack of adequate services. These issues are even more concerning in light of the number of gay male youth whose first sexual experiences often involve older, more experienced, more connected, and more out members of the gay community. In school, parental, and peer-based environments that are marked with rejection, insisting on condom use becomes another obstacle to feeling loved, valued, and healthy in one's sexuality.

    As my colleague Ms. Binder just touched on, young women are also at a heightened risk for HIV. Almost half of new HIV infections among women in Canada are in individuals under the age of 25. Men are often more likely to initiate, dominate, and control sexual relations. It can be difficult for young women, whose male partners are again often older and more experienced, to insist that their partners wear a condom.

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    Aboriginal youth are also very much at risk. Many aboriginal communities are continuing to struggle and to cope with the effects of addiction, colonization, residential school systems, poverty, and a lack of access to culturally appropriate services designed to meet the needs of their diverse populations. HIV infection among aboriginal youth remains a devastating consequence to these issues.

    Youth living in rural or isolated communities throughout this country also face their own set of challenges. Youth in small communities may rightly fear disclosure of their sexual orientation, their gender identity, their drug use, their sexual activity or their HIV status. Confidential access to testing, counselling, and HIV education is often severely lacking or non-existent.

    I ask you to picture this: picture a youth facing only one of the challenges that I've mentioned. Perhaps you even personally know a youth who is facing one of these challenges. Imagine that this youth is one of the 13,000 in Canada who is also living with HIV, and ask yourself, what does your young person need in terms of support? What does the governmental framework look like in order to provide this support? How much care is an adequate amount? And based on the presentations you've already heard today, what and how much is missing from your picture?

    The continued rate of infection among young people throughout Canada tells us that traditional avenues of prevention, care, treatment, and support are not adequately and effectively speaking to today's youth. We cannot reach a 15-year-old in the same manner in which we reach a 25-year-old, and definitely not in the same way we reach a 35-year-old. Their needs are different.

    The need for a multi-faceted HIV/AIDS framework has never been greater. Now is the time for federal, provincial, and territorial governments, school boards, health, correctional and immigration services, community organizations and HIV/AIDS organizations alike, to commit to prevention information and support that is youth-generated, youth-friendly, realistic, and culturally and community appropriate.

    Since the strategy was developed in 1993, we have had the opportunity to develop our skills and knowledge around youth and HIV. We have learned much about prevention and awareness. Generally, youth know how to put on a condom. Generally, youth know not to share their needles. But this information alone is not enough. We also need a framework that enables people like me to train young volunteers, many who themselves are living with HIV, to enter, without question, into schools, detention centres, and communities in order to educate their peers about HIV.

    We need a framework that provides us with the resources necessary to augment and develop prevention campaigns for youth, thereby shifting knowledge into behaviour change. We also need to know that our government is still working to support our street-level partnerships by continuing the collaborative dialogue at an interdepartmental level.

    Since the implementation of the strategy, we have also had the opportunity to develop effective programs and strategies that directly impact the lives of HIV-positive youth. Youth are now living longer, healthier lives with the virus. We are empowered with the knowledge that HIV no longer means a death sentence. We now require a framework that enables us to learn how to continue to support each other through longer-term side effects like depression, learn how to better balance the transitions and inconsistencies that mark our lives with the structured regime of cocktails and condoms. And we need to understand how to effectively prevent the spread of this virus in our communities and how to continue to live powerfully in this country with HIV in our bodies.

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    I am a young person. I am a woman. I am Canadian. I have learned to speak articulately about the issues of HIV and AIDS. This is some of what you can see. I have spent 20 years in our public education system, where HIV has received little more than a passing mention. I live with the disability that puts me in touch with our public health care system on a daily basis. I have been directly at risk for HIV, and everyday I carry with me the HIV/AIDS-related deaths of my young friends and colleagues, due to drug overdose, co-infection, suicide, and AIDS. Take a good look at me and the silent witnesses seated behind me. This is some of what you can't see.

    I am affected by HIV and AIDS, and I am working to make a difference. This committee is affected by HIV and AIDS, and you also can make a difference. Your children, nieces, and nephews, and their children are all affected by HIV and AIDS. Their next generation and the generation after that do not have to be. Please increase the strategy funding.

    The Chair: Thank you, Ms. Sargent.

    The next portion of our meeting is the question-and-answer period. We'll begin with Mr. Merrifield.

    Mr. Rob Merrifield (Yellowhead, Canadian Alliance): Thank you.

    I want to say on behalf of the committee how much we appreciate your coming in. Thank you for the excellent presentations. I think it gave us a lot of information we didn't have. The personal testimonies are valuable as we participate in this important study.

    Actually, the whole area of HIV and AIDS has gripped many countries. We hear a lot about the massive problem in Africa with regard to AIDS. I certainly wasn't aware that areas in our own cities are perhaps as much at risk as some of the countries in Africa. That's alarming to me.

    Just to get the facts straight, I understand that your budget for the program is $42.2 million. That amount was set in 1993. It goes into 10 different categories. First of all, let's look at the categories. Is that amount of money being spent in the right categories? Is it flexible enough? Are there areas where it's working and areas where it's not? If you had more money, where would you put it?

    Dr. Martin Schechter: At the beginning of the last strategy in 1998, the allocation of the funds in the strategy was done through a broad consultation of stakeholders. It was an excellent process by Health Canada. We tried to do the best we could to target the areas within a relatively small budget. There's also ongoing monitoring where that budget can be adjusted.

    In terms of areas, I would have to say that the cracks are showing in all of the areas. In prevention, community care and support, and the special populations that the government has to contend with, such as people in prison, we're seeing the cracks widening.

    On the research side, as much as there is increased funding for research generally, which is greatly appreciated, we still are not able to fund all of the important research that needs to be done. We have success rates for excellent grants that are still 30% of what's needed. So 70% go unfunded.

    The answer, I would say, is that all of the core areas are being stretched. They have been for some time. I would see a process that would do an allocation very similar to what was done in the past, with consultations with all of the stakeholders looking at where the needs are and allocating accordingly.

    Mr. Rob Merrifield: Let me ask that question differently, then. If you were given an additional limited amount of funding and you could apply it to one of the ten areas, which one would it be?

    Ms. Louise Binder: First of all, although this is not exactly a conflict of interest, I should tell you that I was one of the people who helped to divide up the half a loaf the last time around. I can't possibly tell you how heart-wrenching that was, because I knew that whatever I did, it wasn't going to be enough anywhere I did it. I also declare this in my own communities. If you want to start shooting the messenger, you can start with me because I helped to do that.

    To ask us that question is to say once again you're not going to get enough to do enough of anything. So it's Hobson's choice or whatever terminology you like, between a rock and a hard place--you pick it. That's where it will put us.

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    Mr. Rob Merrifield: Maybe I might explain my question. As I see it--and you have actually laid it out very eloquently--this is a disease that is totally preventable. So do we put it into prevention, do we put it into treatment, or do we put it into research? Those are sort of--

    Ms. Louise Binder: All of the above.

    Mr. Rob Merrifield: All of the above. Absolutely! There's no question of that and we're doing that. I'm just suggesting...we have 44,000 a year now who are contracting this. If we're going to deal with this.... I don't think anyone would argue about how serious a problem it is and is potentially going to be in Canada, but in light of that, there are limited funds. We all understand that as well. That's where my question is coming from.

    Dr. Martin Schechter: I think it's a good question but I don't think you can draw lines between prevention and treatment, care and support. For example, when we treat someone with HIV infection and give them these drug cocktails and they're effective, the level of the virus in their blood becomes undetectable, so they're no longer infectious. By treating and caring and supporting people who already have the infection, we're doing prevention, because when you get HIV infection, you must get it from someone else.

    So there is no clear division between prevention and treatment.

    Mr. Rob Merrifield: That explains it a little bit better, because I really wasn't aware of that, either. I'm sure it's an educational thing.

    Getting back to the 44,000 who are being infected every year--I guess this is a question for Sheena, and maybe you mentioned it, but I missed it--what percentage per year are you...?

    Ms. Sheena Sargent: All right, a quick math question I was not prepared for.

    Mr. Rob Merrifield: I'm not trying to put you on the spot. I'm just--

    Ms. Sheena Sargent: No, that's okay.

    Martin, you might know better offhand.

    Dr. Martin Schechter: I can't give you the exact number. If the median age is 23, that tells you at least half are 23 or less.

    Mr. Rob Merrifield: You don't see a disproportionate percentage coming in on the youth side of it. I guess that's what I'm wondering. Is that where we're getting the larger numbers that are contracting?

    Ms. Louise Binder: I can help you a little bit with this, at least on the women`s side. Approximately 26% of the new infections are now in women, but in the youth age group, 51% are women. So that's--

    Mr. Rob Merrifield: Whatever number that is on the youth side.

    Ms. Louise Binder: That's right. It's pretty big. It's very big on the youth side.

    Mr. Rob Merrifield: And when you go into treatment, the cost of the drugs are picked up. Is it different for every province? I understand that, but this is a serious problem in the Vancouver area, I understand, and I think two of you are from there. Louise, you're from Toronto.

    In British Columbia, for example, what is happening as far as the drug costs for these cocktails are concerned?

    Dr. Martin Schechter: I can tell you that right now the B.C. Centre for Excellence, which coordinates HIV drugs in British Columbia, is spending approximately $32 million a year on drugs alone. That's almost the entire federal strategy being spent in one province, just on drugs. There are no doctors' visits in that figure, no hospitalizations, no emergency care. That's the drug budget and it's going up every single year.

    Mr. Rob Merrifield: Are the drugs picked up totally by the province, or is there user-pay on that, or--

    Dr. Martin Schechter: It varies from province to province, depending on what their provincial plan is like.

    Mr. Rob Merrifield: And I'm sure there are individual plans, whatever.

    I think you've laid out an excellent presentation and we certainly appreciate your coming and giving us all the picture here.

    The Chair: Thank you, Mr. Merrifield.

    Mr. Ménard.

[Translation]

    Mr. Réal Ménard (Hochelaga—Maisonneuve, BQ): Thank you.

    As I was listening to you, I appreciated the sharing of information, but I felt that I was going back in time because in 1995, I tabled a motion before the Standing Committee on Health to strike a sub-committee on AIDS, to deal with access to medication within the context of clinical tests by pharmaceutical companies. I remember reading an excellent paper by Louise Binder that gave me all the basic information I needed about this issue as a member of Parliament. I still have a copy of this document. Currently, even if AIDS is less of a mortal disease and more of a chronic one, I have not seen all that much progress.

    Now I have four brief questions for you. Could Martin bring us up-to-date on the question of vaccines? What can we hope for? Can we hope for anything in Canada? Can we hope for something at the international level?

    Here is my second question. I was told that the officials of Health Canada have an obnoxious attitude and that they harass community groups. Small requests for funds are subject to severe control. Given that they will appear before us on Wednesday, would you like to inform the committee about the excessive control applied by officials of Health Canada?

    Third, if you had to request a given amount... I think I saw some documents from the Canadian Health Coalition in which you request nearly $55 million. Am I up-to-date? If we are to make recommendations, it would be good to have an amount in mind; $42 million is ridiculous, but what would you like to recommend? Let us begin with this.

º  (1620)  

    Dr Martin Schechter: Excuse me, I will answer in English.

[English]

    In terms of vaccines, you've probably heard that there was a vaccine trial done recently, one of the first vaccine trials ever done. The results were analysed and unfortunately it was not successful, but that is not necessarily all bad news. First of all, it shows that we are doing vaccine trials. We're ready, we can do them, and we know there are many candidate vaccines being worked on.

    Now, Canada happens to be very fortunate in that we have some outstanding scientists in Canada in the fields of immunology and vaccine development. I think it's a very likely possibility that one of the successful vaccines to come forward in the next five years will come from Canada if we have the investment in research.

    The other point is that you have to be ready to test vaccines, and that means being able to assemble large numbers of people willing to do vaccine trials. There's a whole preparedness issue of working with communities, because participating in a vaccine trial is unlike anything else. When you get the vaccine, you become HIV positive by the blood tests, and you have to accept becoming “HIV positive” just by participating.

    I have to say that I'm optimistic, and that's why I think the next five to ten years is actually going to be a very important and exciting time on the research side. I think we're going to see major progress in vaccines. We'll be doing trials of candidate vaccines in Canada in partnership with other countries. We think Canada should be part of that international effort and could lead it because of the quality of our scientists.

    Do you want to add to this?

    Ms. Louise Binder: Well, it's a Health Canada control and administration question. What can I tell you about it? All government departments have a lot of bureaucracy, in my opinion, and is this more or less than any other? I'm not sure. Do I think there are ways we could streamline processes? Of course I do.

    That being said, my overall sense is that when we raise these issues with Health Canada and when we really point out examples of it, they generally are very good at working with us on a one-on-one basis to do what they can to make their processes not quite so onerous. But it's really time-consuming to do that. That's taking each issue and working through it with them, so I'm not sure quite what to do.

    Of course, there are ways it could be better. We could have a more expeditious way of dealing with our requests for funding and a less onerous way of evaluating them and so on. This is not so to say that I don't think there ought to be very good control of the money spent, because I really do. There's not a lot of money and we want it well spent, so I'm certainly not taking that position. I think we should just be left to do what we like with the money, but there is that fine balance.

    Yes, I think sometimes it's a little more than I would have hoped.

º  (1625)  

[Translation]

    Mr. Réal Ménard: First let me put two brief questions about vaccines.

    Is the pharmaceutical industry involved in that research?

    Is the humanitarian access issue still a problem? I even tabled a bill about this matter.

    Do you have some idea of how much we should recommend to the government? Should it be $55 million or $60 million? This is certainly not easy to determine because diabetes, fibrosis and all the illnesses require dedicated funds and resources are limited. But if we want to review our strategy, we should have some idea. I saw the figure of $55 million, perhaps three years ago. This must certainly be indexed, so that now it is probably $60 million.

    Do not be shy in making requests. They will not necessarily be granted, but at least, they will be specified in the report.

[English]

    Dr. Martin Schechter: Let me take the second part, as to the amount. I think the $55 million number you might be thinking of is that when the government of Brian Mulroney announced the funding level of $42.2 million, a coalition of community groups and the opposition all came forward and said they thought the number was inadequate and proposed $55 million in the year 1993. I think that may be where the number is coming from.

    We didn't want to pull a number out of the air. There was a report commissioned by the Ministerial Council on HIV/AIDS, called the Spigleman report, which you have in front of you, I believe. It is entitled “Taking Stock”, and it does a careful analysis looking at.... Well, we can get copies to you if you don't have them.

    This was done in January 2001. In this report there is an analysis done of the needs, and also an international comparison of what Canada is spending relative to other developing countries.

    Now, I can tell you that Australia, which has much less of an HIV problem than Canada and has done a better job on prevention, spends $2,000 Australian dollars every year per person living with HIV infection. You have to adjust it for the size of the epidemic.

    The United States of America spends over $9,000 Canadian dollars per year for every person with HIV infection in the United States.

    That's $2,000 in Australia, $10,000 in the United States, and guess what Canada spends: $800. This report is based on an analysis looking at our relative priority in this area and what we're spending, as well as the unmet needs. The figure of $85 million has been proposed, and that's the number we've accepted based on these findings. So it's the number we're bringing forward.

    The Chair: Thank you, Mr. Ménard.

    Ms. Fry.

    Ms. Hedy Fry (Vancouver Centre, Lib.): Thank you very much, Madam Chair.

    These are excellent presentations, and I want to thank you for coming.

    Réal actually asked the question I wanted to ask, which had to do with vaccines. And Martin, you answered the question about a ball park figure, which is $85 million.

    But do you see that money tied to an escalator clause? In other words, if we're talking about almost triple the amount in B.C. alone of persons infected and you are talking here about “per infectee” amounts in Australia and the United States, should there not be an escalator clause so that there is a per infectee amount you could increase each year, based on infections going up? Now, obviously the corollary for that is whether it will go down if infections go down, which I suppose one could think about. That's my first question.

    My second question is for Sheena, and it is this. Is there anywhere at all in Canada where there is a comprehensive program in the schools for prevention and education, and if so, is it all done by youth to youth? I think that's the only way for it to happen.

    Third—and any one of you can answer it—the big question here is, if the cost of drugs is going up, and there are new drugs on the market, and you're giving community treatment and community support, given that we know people are now living longer and longer because of the kind of community care they can get, would you see creating another escalator of money as we develop new and better drugs? I'd like to know how you therefore see us dealing with that kind of escalation.

    I want you to know now that I support your position. I support it strongly.

    I need to hear you talk a little bit, Martin, about TB, which is one of the opportunistic infections you do not have to get through blood and body fluids; you can get tuberculosis through walking down the street and being in contact with a person with tuberculosis. There is a risk for all of us because of opportunistic infections like tuberculosis, which we understand is increasing. This is a bigger problem than simply dealing with persons who are HIV positive.

º  (1630)  

    Dr. Martin Schechter: Thank you for the excellent question.

    I'm not sure how government can deal with the question of escalating or adjusting funding. I'd have to leave it to the people in government to answer that.

    There's no question that if you have a problem and you fix a budget at x, and you leave it there for 10 years, when we know for a fact that the problem has worsened, it doesn't make any sense--not to me. I don't know what the answer is as to the mechanism, but if the infection rate is going down, I would say, hey, this is working, so let's do more of it. That's the goal. The goal is not to increase the number of people with the infection and increase the budget but to make this problem go away. Preventing infections is of critical importance to stopping the cycle you've heard described here.

    So I always view the funding level as a question not of how much you have this year to spend on an issue, but of how much you're willing to spend next year or the year after. It's a very simple question. Do you want to spend another $42 million this year to get the budget to $85 million, or do you want to spend $600 million every year added on?

    It's like the oil filter commercial--you can pay me now or you can pay me later. Why do the provinces keep coming back to the federal government? The health care system burden is breaking them because of the infections we didn't prevent 10 years ago, that we're now having to treat with $30,000-a-year drugs. Let's prevent new infections now so the provinces don't come to you in 10 years asking to treat another 50,000 people with HIV infection. That's the way I view the funding argument in terms of the amounts.

    As I said, we are entering a very exciting era. There has been a lot of work on vaccines. There's both private sector and governmental work going on around the world. I think we're going to see significant progress on vaccines within the next five years.

    I think Canada can be a leader internationally. We have made major contributions to the worldwide effort on HIV with our research discoveries in Canada. Some of the drugs developed here and our clinical work and so on are things the country can be very proud of, and we can be a leader in vaccine development as well.

    Ms. Louise Binder: I'd just like to make a few points directly related to this issue.

    We did very well at the beginning when we put a lot of money into prevention and we targeted it to the gay population, which was the population we understood to be becoming infected. This is again me really blaming myself to a degree, but when we looked at the second round of what to do with this funding when it came, we looked at how well we'd done in prevention and said, oh, I guess we don't need so much money in prevention anymore, now that we have new treatments and research.

    It was the half-loaf thing. We thought we were getting somewhere there, that we did a great job on prevention and it must be fixed, so let's put it over here. I guess it's human nature.

    We are seeing increases in that population now because we were wrong. The fact of the matter is that prevention isn't a one-time thing. You have to keep getting the message out to that original population and now, of course, to all the other populations where there are epidemics. But when you balance the money you spend on prevention against the money you're paying for every infection, the cost-benefit ratio is by far in favour of keeping up that work.

    Having said that, you also have to keep up with treatment and research. Conversely, people are not going to be interested in prevention efforts if they don't feel there are treatments; they work together. But the reality will be that you'll spend much less on treatments in the long run because you'll save so many people through prevention efforts. This balance needs to be kept, but I assure you, even though you spend more initially, it will shift later and your total costs over time will be much less.

    Of course, I could also say that doing something about international laws on patent protection would help with the drug pricing problem, but perhaps a different committee deals with that.

º  (1635)  

    The Chair: Thank you.

    Ms. Bennett, please.

    Ms. Carolyn Bennett (St. Paul's, Lib.): Thank you very much.

    Do you include research dollars in the AIDS strategy? How do you now deal with the dollars going to CIHR? Do those dollars get subtracted from the AIDS strategy? If you've given this much money to CIHR and then a certain amount of AIDS projects get chosen, how does it work out in terms of adding that up over a year?

    Dr. Martin Schechter: I'll tell you what my understanding is. I think you'll have witnesses who could probably answer this better than I.

    My understanding is that there is about $13 million in the strategy that's earmarked for research. It was, until recently, administered in a number of different ways, but with the birth of CIHR, the agreement now is that CIHR will administer the research funds. So they use their mechanism of granting awards, but the money, the $13 million, is transferred from Health Canada to CIHR to fund that particular envelope of HIV research.

    Does that clarify your question? It's part of the AIDS strategy. It's part of the $42.2 million.

    Ms. Carolyn Bennett: So CIHR then is administering more dollars than we give it directly. Some of it comes out of the Health Canada purse for HIV or for other things.

    Dr. Martin Schechter: Yes. It's an envelope that's transferred over that CIHR administers.

    Ms. Carolyn Bennett: But if in CIHR there were more projects that were spectacular, that they wanted to fund out of their money, how would you count that in your AIDS strategy? I don't think it's confined to $13 million. So when you're asking us to increase the AIDS strategy, is there a tally now of how much is actually being spent by the federal government in AIDS research, including what happens to be in CIHR, or in SSHRC, or in some of the others around best practices and AIDS support and some of the other things that we might know?

    Dr. Martin Schechter: I think the answer is that definitely, from time to time, CIHR funds more than what comes out of that envelope of money. When there's an excellent batch of research, they will.... In fact, I think every year they use something in the neighbourhood of $2 million of their own funds to increase the amount of research that's actually performed. So you're right, there are probably little bits here and there.

    It's very difficult for us to answer that question. I think it's the federal government that has the answer to that.

    You're right, there's probably $2 million or $3 million extra that CIHR is using, of its own money, for research in the area of AIDS, and there may be little bits here and there that we don't know about. So it's likely more than $42.2 million.

    Ms. Carolyn Bennett: Okay. I had thought CIHR was sort of envisioned to take the politics out of health care research funding.

    I chair the disability committee, so I have to tell you there are some members of the disability community who aren't thrilled that in the last budget we singled out one foundation and gave it a bunch of money, when technically we were supposed to have the politics out of health. It shouldn't be the people who yell the most.

    I do think you know that at the McGill school of management, AIDS lobbying is taught as a case study. Steve Maguire's piece is that you guys have done a great job.

    We didn't want it to be politically driven. We want it to be part of illness prevention. You should be focusing on the ones that are preventable, all those sorts of things. So there's a different way of--

    Dr. Martin Schechter: You're right, but CIHR has a new model, which includes strategic research. In fact, the 13 institutes of CIHR are designed to look into the areas of their mandate and to look at what the urgent and pressing needs are. So they're in fact unveiling large numbers of strategic, targeted initiatives at urgent Canadian health problems. What we're saying is that HIV/AIDS is one of them.

    Ms. Carolyn Bennett: Yes. In the fed-prov, this rather complex federal system we have, is it not a bit weird that provinces don't want to spend any money on prevention, that they would actually have to come to us every time they think there's a prevention problem? When you say they should come, surely what you're saying in terms of the economic burden of AIDS over the long run....

    For the people who are actually delivering the health care and it's coming out of their budget, isn't there a disproportionate...? How come they're only spending 1% of their health care budget on prevention and public health?

º  (1640)  

    Dr. Martin Schechter: Well, I would say that if you went to my province and talked to people in the provincial ministry of health, they would say they're spending a lot of money on HIV/AIDS. They're spending $32 million on drugs alone. They're spending--

    Ms. Carolyn Bennett: No, what are they spending on prevention?

    Dr. Martin Schechter: But they would say they have a jurisdictional problem. They are broke from doing treatment. That's the issue. And every time the federal government approves a new drug, like when the FDA just approved T-20, or Fuzeon, suddenly that will come to the B.C. or Ontario or Quebec, etc., provincial formulary at $30,000 a year per person. So I think the provinces feel they're carrying a fair load. If you add up the provincial expenditures totally on HIV/AIDS drugs, care, medical visits, and so on, it would make the federal strategy pale.

    Ms. Carolyn Bennett: Are there HIV drugs with expired patents that have not been picked up by the generics?

    Dr. Martin Schechter: No. The drug AZT was the subject of a lawsuit brought forward by a generic company, which lost. As far as I know, they're all under patent protection.

    Isn't that right?

    Ms. Louise Binder: Yes.

    I'd just like to make a couple of comments about this. First of all, Ontario does put money into prevention. I can't tell you the exact amount of money, but they actually do. I never see these. These things are on a continuum for me. Paying for treatment also helps pay for prevention. I think we need to be careful not to try to do...it's the silos that create the problems.

    When people used to say to me, what a great job you folks in AIDS have done and you're the model and all that stuff, I used to think it was a compliment. Now I'm not entirely convinced it was meant to be that. It almost gives me the sense that somehow we're getting away with stuff.

    The reality of the matter is that this is an epidemic. It is a preventable disease killing productive young members of our society. And not to compare us to other disease groups, but when you do look at research money, it is important to look at the whole pie. Regrettably, because of the stigma attached to this disease and the populations it seems to reach for the most part, we don't get much private funding, and I regret this. I'm very happy there are other disease groups able to do much better in that area than we can, because they need it.

    But the reality is that this is pretty much the only game in town for us. I really hope you won't forget that.

    Ms. Carolyn Bennett: Why doesn't funding for education in this area come out of the provincial moneys for education? Why does it have to come out of health? Why shouldn't public health education come out of the education budget in the schools? Do the schools help you do this?

    Ms. Sheena Sargent: That's a great question. I wish I could answer with a strong, resounding yes. It's a very complex process. The ministry can say you need to mention HIV, you need to talk about it; but all along the way there's input from the school boards, the administration, and the teachers and parents. And the message might just become, don't have sex until after you're married and you won't get AIDS.

    So, yes, it would be awesome to have more collaboration between all the ministries. That's the way to start the dialogue, absolutely.

º  (1645)  

    The Chair: I have Ms. Skelton and Mr. Ménard and Ms. Fry again.

    I just have one question to do with this $2 million to $3 million you think you get out of the CIHR for AIDS or HIV research, and the $13 million from the AIDS strategy, which gives you a total of about $16 million. Is having this AIDS strategy such a terrific idea for you when it includes research? It doesn't seem to me you're really getting your share of the CIHR money, when their budget is $669 million and you're only getting $2 million or $3 million.

    What about taking research out of our AIDS strategy and then asking the government to try to get a larger chunk of that pie by challenging the CIHR to be responsible for all the research around AIDS? That's a pretty big number, $669 million.

    Dr. Martin Schechter: Well, I think that would probably do AIDS research a disservice.

    First of all, I am a major supporter of CIHR, and I congratulate the government for the increases in funding that have been given to CIHR. I think they're essential and have to continue. It has all kinds of benefits, not only for the health of Canadians but also for innovation in a knowledge-based economy.

    The issue, though, is that CIHR is a transformative organization. It has gone from funding only basic laboratory-type research all the way out to the full research spectrum, including sociological and behavioural research and population health. Although $669 million sounds like--and is--an incredible amount of money, it is funding a much larger mandate. In fact, if you look at the success rates at CIHR, they're pretty stable, because the number of applications has gone up.

    In fact, what the government has done in expanding CIHR is outstanding and it ought to continue. I think it's an incredibly good investment for the country, but you must recognize that the broader mandate has created far greater expectations of and needs for that organization across the country.

    I think it was wise for there to be research moneys set aside in the AIDS strategy because, as has been pointed out, we don't have private foundations we can go to, whereas you might find that with other groups. There's very little private charitable money to fund AIDS research, as you might find with heart and stroke diseases, who have very large foundations.

    The partnership between researchers and the community within the AIDS strategy is critical. We're not separate silos. We actually work together. We can't do research on HIV unless our partners in the community support it. In our network, we have people living with HIV on all of our review committees, and I think you're going to see that in the future at CIHR.

    The Chair: Well, I'm not sure if you're satisfied with the $2 million to $3 million you're getting out of the CIHR or whether you missed your calling and we should find you a job at the Department of Foreign Affairs in the diplomatic corps.

    Are you satisfied, or do you want us to help you lobby the CIHR for a larger piece of that pie?

    Dr. Martin Schechter: I think the CIHR needs to be expanded even further, and if you can provide them with additional resources....

    The Chair: You're back to diplomacy.

    I'm going to move on to Ms. Skelton.

    Mrs. Carol Skelton (Saskatoon—Rosetown—Biggar, Canadian Alliance): I want to thank you very much for your presentation. I think it was one of the best presentations we've heard. Maybe it's just because I'm not that informed, but I really did appreciate it.

    I want to ask about the this women's group, Voices of Positive Women. I gather from your testimony that you have benefited greatly from this organization. Do they go right across Canada?

    Ms. Louise Binder: It's actually a provincial organization in Ontario, but we've certainly talked about how wonderful it would be if we could...and we have quite a bit of influence, actually, in other areas. We do help women out in other areas with particular issues, but so far we've remained in one province.

º  (1650)  

    Mrs. Carol Skelton: Why is that? Are there so few of you? I know 600 women is a lot, but coming from a sparsely populated province, I could see all the things you mentioned. In my riding alone, I have the rural area, the underprivileged, the first nations people, the street children--all those in my riding alone. And I would love to have an organization like yours there for my people.

    Ms. Louise Binder: Right. Then we should talk some more. I'd be happy to help.

    Mrs. Carol Skelton: I would love to see your information, brochures or anything like that.

    Sheena, I'm asking the same thing of you. Does your organization go right across Canada?

    Ms. Sheena Sargent: No, we're just based in Vancouver. We do a bit of provincial work as well, but there are different youth programs with different organizations throughout Canada doing similar work.

    Mrs. Carol Skelton: Is that right? I'm sorry I don't know about them in Saskatchewan--and that's my problem, because it hasn't affected me. I know there are people in my riding who are reaching out, and I guess I just haven't been able to touch them the way I should have been by becoming more proactive in my role. I would greatly appreciate any information you could give me.

    How are you working with our aboriginal, our first nations, communities? How are you interacting with them?

    Ms. Louise Binder: We certainly do a lot in both of the organizations that I chair. At the Canadian Treatment Action Council, we have a council of 19, and one is for the Canadian Aboriginal AIDS Network, to bring the aboriginal issues to our treatment access work. In fact, we're doing a research project about post-approval surveillance, adverse event reporting, and we've set up a particular section that's just for aboriginal people, to help us learn how they would like to interact with the health care system to report these things.

    As for Voices of Positive Women, of course, all you have to be is positive and declared a woman and you can join our organization. We just had our annual general meeting and we had a room full of women, every kind you could possibly imagine. So we've done very well. There is a Toronto aboriginal group, and we've been working a lot with them. It's a great partnership.

    Mrs. Carol Skelton: That's good.

    Sheena.

    Ms. Sheena Sargent: I was just going to say it's one of those beautiful creations of that street-level partnership that I was talking about.

    At YouthCo, we have a lot of knowledge about working with youth. We'll approach an aboriginal organization, or they'll approach us and say they have some great ways of working with their folks back home. So we do a lot of dialoguing, a lot of partnering, and often we can come up with some really great stuff along the way.

    Mrs. Carol Skelton: Thank you.

    Mr. Merrifield had a question about funding.

    The Chair: I was going to move to Madame Scherrer, who hasn't had a turn yet.

[Translation]

    Ms. Hélène Scherrer (Louis-Hébert, Lib.): Let me briefly come back to the prevention issue. In my opinion, without substantial investment in this field, we will never succeed in defeating this disease. I see that in general the illness is targeted rather than prevention as such. For prevention, very often we have tried to raise the awareness of groups that are sometimes considered as marginal or as having marginal behaviour patterns, such as drug use or certain sexual practices.

    Let us take youth for instance. My own children, who are adolescents and young adults, think that they are not exposed to the transmission of this disease because they live a rather regular everyday life. When they meet a new friend or a new chum, there are a few sexual relations and, after a month or two, if the chum becomes a steady boyfriend, they no longer use condoms, because their relation has become stable and acceptable.

    I feel that we do not sufficiently raise the awareness of those youths who are not generally identified as youths with problems or as delinquents. When my children tell me such things or when I hear a youth tell me that since he has been going out with someone for three months, he no longer needs to wear a condom, my hair stands on end. I then tell them that there is no basis for such a belief. Now here we are not talking about youths who have not had any education or schooling; we are dealing with youths who hear about this issue every day.

    Is it due to lack of money that you do not try to communication with these youths? I feel that up to a certain point, they feel perfectly safe because they are not really doing anything marginal. Thus, nobody is doing any prevention work with these youths or telling them that what they are doing is extremely dangerous. The fact that they have been going out together for three months and that their relation is stable does not guarantee anything.

    In my opinion, it would be very important to invest in more awareness raising among youth. They do understand the facts, but they are told that this terrible illness only affects people who indulge in really terrible practices. Now we know that this is not so. This illness even strikes those youths who lead perfectly normal daily lives and whom we consider as the normal children of our community.

º  (1655)  

[English]

    The Chair: Madame Scherrer, what is your question?

[Translation]

    Ms. Hélène Scherrer: Is it because of lack of money that you are not doing any prevention work with these groups? Do you have any prevention methods conceived specifically for them? Are you eventually going to take an interest in these groups of youths who are currently not included in prevention campaigns?

[English]

    Dr. Martin Schechter: I'll start, but I think Sheena will come in.

    I think it's something Louise said earlier, that this message is lifelong. We had a blitz in the eighties and nineties. Then, as the money was flattened, certain priorities had to be made, and things in the strategy had to be sacrificed. The funding was fixed, so things had to be prioritized.

    There's no question that people, in time, will become complacent and those messages have to be reinforced. So you have to think of prevention and health promotion not as a one-time deal, where you spend a few million dollars, do a campaign, and it's over. This is forever. And youth are critical. It's not just youth today, it's youth tomorrow and the year after and the year after that.

    Ms. Sheena Sargent: Sorry, I got the Reader's Digest version of your question. My translation is in a knot, but I can't undo it.

    You had a question about general messages for youth around prevention. I would say yes. I would say it's absolutely important. It's part of the reason we go into schools and do this work.

    If you look at young women, for example, a lot of women are disadvantaged, but they also are mainstream, so this is part of the strategy. When dealing with prevention messages for young women, we're also talking about dealing with prevention messages for young, straight, heterosexual men as well.

    So with everything comes a balance. When we talk about targeted prevention campaigns, we're always exploring the other side--what other factors are going on in the mainstream that are going to influence this one population.

    Does that answer your question?

    Ms. Hélène Scherrer: Yes, sort of.

    The Chair: Thank you, Madame Scherrer.

    Mr. Ménard, and then Ms. Fry.

[Translation]

    Mr. Réal Ménard: Could you table before the committee a list of research projects that have resulted in producing vaccines? I would like to know how much money is being invested and who supports this kind of research. I saw a document about this a few years ago, but I would like to be up-to-date on this subject. There is nothing that I would like more than to share your optimism in believing that this will take place within five years.

    No doubt you know that this committee is going to review the entire issue of the cost of subscription drugs. Beginning in June, we will begin a longitudinal study. All the colleagues around this table are convinced that this is an important issue for this committee.

[English]

    My question is for Madame Binder.

[Translation]

    Is there still room for a recommendation to the pharmaceutical companies to allow humanitarian access to medication?

    Earlier you said that all the medication for AIDS was available in a generic form. You mentioned medication that costs $30,000 a year. Now I did not know that it was available as a generic drug.

    Considering our relations with the multinationals who originally created the medication, do you think that the battle you waged in the early 90s is still relevant?

»  (1700)  

[English]

    Dr. Martin Schechter: On the first part, I don't know the exact amount of dollars going into vaccine research, but I think I remember now what you may be talking about with the $50 million. The federal government committed $50 million to an international vaccine initiative and sent the money outside the country for them to disburse for vaccine research. I know many of my colleagues who work in the laboratories developing vaccines felt that some of that money ought to have gone to Canadian researchers, who are world leaders in vaccine development.

    So I think the answer is that Canada has committed a fair amount of money to the international efforts, but as to how much is being spent within Canada, I can't give you an exact figure.

    Ms. Louise Binder: I'd like to say I'm really happy we're doing vaccine work around the world, but I really wish we'd take some interest in microbicide research around the world, because it would save millions of women's lives. I don't say that just from my own opinion. I met with a group of women from Tanzania last weekend because I'm hoping to do a little work over there, and when I asked them about microbicides for Africa, they said it would save lives and women would use them.

    I'm not suggesting we shouldn't put money into vaccines. Please, I don't want anybody to walk out of here and say that Louise doesn't believe in vaccines. Of course I do. But in the meantime, we have some microbicides that are in phase three clinical trials. If we could get some of these microbicides out there, finish the trials and get them out to women.... They're in a gel or a cream form--I personally think a sponge is the best idea--that a woman can use. Her partner doesn't have to know about it. It doesn't have to be expensive. It will save women's lives, millions of them.

    That's my chance to say something. Thank you for allowing me.

[Translation]

    Mr. Réal Ménard: With regard to access for humanitarian reasons,

[English]

do you want to have a clear clause and recommendation in the report about compassionate access?

    Ms. Louise Binder: I did understand that question and was coming to that, but I had to get my chance in for microbicides.

    Ms. Carolyn Bennett: Do they kill sperm too?

    Ms. Louise Binder: Yes, some of them kill sperm as well. Some of these are being tested to do both, so I beg you to think a little more about that.

    But on compassionate access, I have to tell you a very sad thing. Because our drug review process in Canada is so slow, companies don't want to start expanded access programs for drugs before they're through clinical trials. They think they will have to do it forever because we never get these drugs through. I have a very specific case that just happened.

    We had an expanded access program, and a very generous one. I often beat up on the pharmaceutical companies, but they really were good on this and provided us with a drug that was fairly far along in development and for which they had asked for approval for sale in Canada. Suddenly, two days before Christmas, I got calls from doctors from across the country saying to me, “Louise, I just got a letter from this company saying they are stopping the compassionate access program. No new people can get this drug and I have all these people who desperately need it”.

    I got in touch with the company and the reality of the matter was that because they thought their drug was going to be approved a long time ago in Canada, they had budgeted a certain amount of money for this expanded access program. But they just couldn't let any more people in because it was already costing them way more than they thought it would.

    I believe in safe and effective drugs being approved for this country, but I'm telling you that we take much longer than is needed to ensure that, and it is affecting our ability to get expanded and compassionate access programs. Do I want them? Absolutely. But also we need to keep our bargain and make sure we have efficient processes in Canada.

    Don't waste time. Certainly do everything that's needed to make sure things are safe. I don't want anybody to have unsafe drugs. I want a completely effective drug on the market and all the time that's needed to make sure the work gets done, but we seem to take four, five, and sometimes ten times longer than other countries. We take ten times longer than Sweden. Is it bigger than we are? No. How can that be?

    So I absolutely want that, but we also need to put our house in order.

»  (1705)  

    The Chair: Thank you, Mr. Ménard.

    Ms. Fry.

    Ms. Hedy Fry: Thank you very much, Madam Chair.

    I have just a quick response about compassionate access and the length of time it takes. When I was parliamentary secretary in either 1994 or 1995--I think Réal may have been on the same committee--we looked at this particular issue, and there's a report somewhere on speeding up access and the whole concept of compassionate access. So if the Department of Health can find it in its archives they can pull it out, because I think it is as relevant today as it was then. I don't even think anything in that report would need to be changed, because it was so pertinent.

    In British Columbia there's a Positive Women's Network. It's been there since about 1997, and there are also the aboriginal HIV networks. There may be something locally in Saskatchewan that you may want to check on. I think some of these are provincially based only, but it would be nice to make it a Canadian network.

    I want to just elaborate a little bit on this whole concept of why it is important to keep the HIV/AIDS strategy and its research separate from everything else. It is probably one of the few really infectious diseases we deal with in this country anymore. We don't have to deal with typhoid, malaria, smallpox, or any of those things.

    It is not only the fact that HIV is accessible through blood and body fluid contact, but I really would like to hear somebody elaborate on the other opportunistic diseases that are spread by different infections--droplet, respiratory, other ways--such as tuberculosis. What is the incidence in children born of mothers with HIV/AIDS and what are we doing for them?

    These are issues we need to talk about, because more and more women are getting infected, and more and more children are going to be born infected. I can't think of a better reason to expand the funding, because we need to deal with all of those issues.

    Perhaps somebody can elaborate on those for me, please.

    Dr. Martin Schechter: You're absolutely right. With regard to the transmission of HIV from a mother to her baby, fetus or newborn, that is almost virtually preventable now. If the cocktails are used during the pregnancy and if the infant is treated, that transmission rate could be reduced to below 1%. Yet we've just seen studies where women are not being routinely offered testing during their pregnancy, so we won't be able to find that out. That kind of research and that kind of knowledge translation of getting that into practice across the country is critical.

    I've heard of a number of women in northern Alberta who have been found to be HIV positive, have delivered HIV-positive babies, and I think the preponderance of them are aboriginal women. So we are not doing as well as we could in eradicating mother-to-child transmission, which is completely preventable, or virtually preventable, with treatments.

    I'd mention one other thing that I think people should understand about the role of the pharmaceutical industry versus the role of government and public funds. The pharmaceutical industry is exceptionally good at developing new drugs. We owe them a great debt of gratitude for the drugs they have developed with regard to HIV/AIDS over the last 10 or 15 years, and we will rely on them to develop the new drugs that are coming down the pipeline.

    But there are other studies that are equally important, that I call management studies, that try to figure out how best to use the drugs we have. Let me give you an example. Suppose I want to try to get these drugs to be accessible to people who are underserviced and marginalized. Well, they're not going to do well on a regimen of 30 or 40 or 50 pills a day. They might not own a refrigerator. I would like to try to develop a regimen where they have to take their pills once a day. For me to do that, I have to show that regimen of once-a-day treatment is just as good as a more complicated regimen. Now, who's going to pay for that study?

    The pharmaceutical industry is not interested in studies that lessen dosages or dosing schedules, and who can blame them? They're going to invest in new drug development. It's only public funds that will ever fund the kind of management studies that are going to find simpler treatments that can reach hard-to-reach populations, that can use lower dosages that save provinces money and allow them to bring new drugs into the formulary. That kind of research is completely dependent on the kind of funds that we see in the strategy, devoted to research.

    I wanted to make that distinction. We can't fully rely on the pharmaceutical sector. We do rely on them for the new drugs, but to optimize what we have and make them as cost-effective as possible, we require public funders.

»  (1710)  

    The Chair: Dr. Fry.

    Ms. Hedy Fry: Can you talk about the incidence of TB?

    Dr. Martin Schechter: Yes, I'm sorry I did not touch on that.

    There's no question that we had a big scare several years ago when multi-drug-resistant TB started to show up among people, particularly in New York State. So now we're talking about, as Dr. Fry pointed out, a situation where HIV may not be transmissible, but the opportunistic infection that the person has is highly transmissible, and we're talking about tuberculosis.

    So at the local level, obviously rigorous measures have to be put in place when a person with TB is identified and treated, whether it's HIV related or not. But there's no question, globally and within Canada, HIV has brought tuberculosis back to life. It was a disease that we had fully under control. It was disappearing. But when HIV arrived, tuberculosis underwent a rebirth. It's something we have to be very cognizant about.

    The Chair: Mr. Merrifield, then Ms. Bennett.

    Mr. Rob Merrifield: I have two quick questions and they're really quite different. One is taken from what you just said about pharmaceuticals and we're just about to get into a major study on that. I think exactly what you said could apply to all pharmaceuticals. We're seeing that and we will see it more as we get into the study. Nonetheless, that's a separate issue.

    I am a little concerned when you look at the population or projected growth of population in the aboriginal community compared with the rest of Canada, which is six or seven times the rate of childbirth. Then you come forward and say HIV and Hepatitis C is a much more significant problem in that population. I'm wondering, from your perspective, is it just socio-economic? Is there something genetic, a disposition as to why they would be more prone to it, or is it cultural? Do you have a handle on that at all and how do you work and integrate with the aboriginal community?

    Dr. Martin Schechter: I don't know if we really know, but I have operated under the assumption that this is socio-cultural, due to social dislocation and deprivation, rather than any kind of genetic predisposition.

    When you hear the stories of people in our study who are now addicted to drugs, when you hear the stories of what they went through—their parents coming out of residential schools, and then cycles of abuse—it's horrendous. We have embarked on studies in British Columbia in partnership with the aboriginal community involving northern communities, Prince George, and also Vancouver.

    I think clearly an important part of the new strategy has to be the aboriginal strategy—because we can't do it; it has to be done with and by the aboriginal community—to deal with issues like fertility rates, and the issue of maternal-child transmission in aboriginal communities, and so on. There's no program I know of developed by us folks down in Vancouver without consultation that's ever going to fly. But our experience says that when you work with the community and design with them programs that are culturally sensitive, you can make progress.

    Mr. Rob Merrifield: The other question I have is this. You're coming here today to raise our awareness and impress upon us how you need more money—and the figure of $85 million was brought out—but I'm wondering where you have gone with respect to direct communication with the minister, and what the response has been.

»  (1715)  

    Dr. Martin Schechter: Well, we visited with the minister's assistant—I forget when that was—who carries the AIDS file, and we made a representation very similar to what we said today, although not exactly the same people.

    What we're told is that Health Canada wants to evaluate the strategy and is embarking on an evaluation that will last through 2003. We're not sure when it would end. The expression we've heard is that the future course of the strategy and where they take it will depend on that evaluation.

    Mr. Rob Merrifield: So you're telling me the answer was another study?

    Dr. Martin Schechter: Yes.

    Mr. Rob Merrifield: That's consistent. Thank you.

    The Chair: Thank you, Mr. Merrifield.

    Ms. Bennett.

    Ms. Carolyn Bennett: Thanks very much.

    I was interested in the delay in drug approvals and such things. I don't think there's a better example of a community that is as knowledgeable as yours, so I would like to know this. I understand the FDA developed a program where, with stakeholder support, a new drug with huge international evidence could either be fast-tracked through, with the approval of the stakeholder groups, into rapid distribution; or the yellow, amber, and red lights would go up and it would have to go through the regular process, if they thought perhaps the research was not great or was self-serving in some way.

    Obviously this is bigger than AIDS—I think some of the cancer coalitions and some of the others are looking at it—but my feeling is to wonder why we redo all this stuff that's well done everywhere else. Wouldn't we be better using our scarce dollars doing either post-market surveillance or the kinds of studies Dr. Schechter is talking about?

    Is that something--not that it's going to be in this report--that could be a recommendation from this committee, where we say, there's only this much money to go around, so we don't want you spending it on stuff such as...? Harmonization and all this stuff is going to take forever, I think, around the world, but couldn't we be asking for AIDS and AIDS therapy to be a pilot where you would try, with a very, I think, cohesive group of stakeholders...?

    I think that's really what I meant by the McGill school of management study, that because you got cohesiveness in all of the people dealing with this disease, you ended up not with one group saying this and the other group saying that, and a cacophony the government didn't know what to do with; you made your case clearly and came forward.

    Are the groups, Louise and Sheena and Martin, actually saying a more coherent drug approval policy in this country would be very helpful in terms of freeing up AIDS strategy money?

    Ms. Louise Binder: Yes, there's no question. We've been asking for improvements in best practices, looking at best practices in other countries, in harmonization, and in joint reviews. I can give you recommendations that an HIV/AIDS working group worked on four years ago with what's now the Therapeutic Products Directorate. It also included a whole section on post-approval surveillance, and still we have these problems.

    Yes, it would. I would also alert you to watch the common drug review process as it begins to take flight, because they held a meeting last week for community stakeholders interested in this area. It's not yet clear to me that they are going to in fact be more efficient in the second part of the review process, which is the review for formulary coverage, than the patchwork quilt we have right now.

    I'm going to remain hopeful because otherwise, if I didn't, I'd give up. But I can't say I'm as optimistic as I'd like to be about that process either.

    The Chair: Thank you.

    Seeing no further hands, on behalf of the committee, may I thank you very much, not only for your very clear presentations but your generosity with your answers and sharing your experience with us.

    We will be having another meeting or two on this subject and then trying to write a little report with a few recommendations to the minister. When that is ready, we'll share it with you.

»  (1720)  

    Dr. Martin Schechter: May I submit this report that people were asking about?

    The Chair: Yes, to the clerk. He'll come and get it from you.

    Dr. Martin Schechter: Thank you very much for having us.

    The Chair: Our pleasure indeed.

    Ladies and gentlemen, we have some budgets ready that we have to pass on Wednesday, so I hope people will be able to be here. We didn't at any point have a full quorum. On Wednesday we're having more on HIV/AIDS. As far as the letters you asked me to write to the minister, those letters have been written, signed, and sent, but I have to get them translated before I can distribute them to you. Hopefully that will be this week or next week or something.

    This meeting is adjourned. Thank you very much.