[Recorded by Electronic Apparatus]
Tuesday, November 19, 1996
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[English]
The Chairman: Pursuant to Standing Order 108(2) on the study of poverty and discrimination, this meeting is called to order.
First of all, I would like to ask the members present if we can have unanimous consent for one of the witnesses appearing before the subcommittee today to remain anonymous.
Some hon. members: Yes.
The Chairman: Thank you.
Today it's my pleasure to welcome the witnesses here and to thank you for attending. You may notice that members may come and go as the meeting goes on. We need three members in order to hear witnesses and to have your evidence put into our records, so don't be upset if they're coming and going and wandering. There are other meetings going on.
Today we have seven witnesses: from the Canadian Hemophilia Society, Derhane Wong-Rieger, who is the president; from the Newfoundland and Labrador AIDS Committee, Gerrard Yetmann; from the Canadian Public Health Association, Mary Ann Mulvihill, who is the acting program director, Hannah Cowen, who is a nurse, and Judy Redpath, who is the association's editor; and from the HIV-T Group, Joanne Decarie and a general member.
I welcome the witnesses and thank you for your attendance.
If it's all right with you, we can hear each one of you individually and then go to our questions.
Derhane Wong-Rieger will lead off.
Ms Derhane Wong-Rieger (President, Canadian Hemophilia Society): Thank you very much, Mr. Chairman and members of the subcommittee, for inviting us here to actually present our views in regard to poverty and discrimination and HIV/AIDS. I would also like to express our appreciation for having had the opportunity to present to the subcommittee on its various issues before.
It's actually a pleasure for me to lead off because I think the hemophilia community and the HIV-transfused community - who also sit as part of the Canadian Hemophilia Society - represent what the government can do with their programs of assistance to alleviate the poverty and some of the problems and concerns of people who have been infected with HIV.
The hemophilia community, I think, has experienced both the before and the after with respect to receiving financial assistance or compensation from the governments. Just as a reminder, there was a fairly extraordinary impact on the hemophilia community from HIV through infected blood products. As a result of that, we also developed a support group for people who have been infected with HIV through transfusions, and we have worked very hard in the mid and late 1980s to fight for financial assistance or compensation from governments.
We were very fortunate in the responsiveness of the federal government in 1989. We received a four-year compensation package, and then towards the end of that period of time we received the agreement from the provincial governments, after a considerable amount of effort on our part on behalf of hemophiliacs and the HIV-transfused community, for a compensation settlement.
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That has made no small impact. Most hemophiliacs, as you may know, do not have access to life insurance because of their life-long disability. Most of the people affected were the breadwinners in the families. Many of them, as they became ill, lost their jobs. Many of them lost their homes. Many of them were forced to go on welfare. I think what the compensation and the assistance represented was the ability for people to have a secure future for their families. There was a lot of concern about being able to retrain for jobs, and with the assistance people were able to move from welfare back into the job market and into jobs they could handle.
Obviously, assistance has meant that people had access to sufficient foods, to supplements, to medicines and to housing - all things that we think are essential. There are many things that may have been left out of that compensation, and I think we have presented separately with regard to concerns in terms of things that are not there, but we want to make the case that all people infected with HIV deserve the same level of financial assistance and the same level of compensation.
We still see some startling differences within our community, and we can only point to spouses and to children who have been secondarily infected and who have received no assistance. We have families within our community in which both of the adult members and the children have been infected, and there we can see the strain that poverty has placed on them in terms of their ability to lead a quality life.
Within our own community we also see those people who have been infected with hepatitis C through the blood products - those who have not been infected with HIV - and have received no compensation. There we see the struggles of people losing their homes and their jobs. They are not able to adequately support their families. I think the loss of dignity is as great a tragedy for these people as for the rest of the community.
It is very clear, based on the research, that there is a strong link between economic resources and symptoms and the number of days of hospitalization. There's a huge strain on the public welfare system because of people who are unable to retrain for jobs, and who, as a recourse, then have to rely on public assistance. I think it is very clear that it is not only good ethics, it is good economics for governments to provide sufficient financial assistance for all those who have been infected. I think the impact in terms of health, both physical and mental, cannot be underestimated.
As people who have in fact fought hard and been able to be accorded some degree of compensation, we call upon governments to extend the same level of care and assistance to all people who have been infected, regardless of the cause.
In closing, I would like to also point out that there is a large group of hemophiliacs, a large group of people who have been infected with hepatitis C, who are experiencing the same problems with regard to discrimination and poverty as those who are infected with HIV. In this case, we have even clearer evidence of the negligence of governments, of the wanton disregard for human life that allowed up to 200,000 Canadians a year to be part of a controlled research experiment to test the effectiveness of surrogate testing of donated blood.
The research was considered unethical in the U.S. because the clear benefits of surrogate testing - and even when the research data that was collected in Canada on Canadian patients indicated that testing would in fact eliminate hepatitis C, there was no action on the part of either the Red Cross or governments to introduce the surrogate testing to stop the research experiment.
Worse than that, three years after the research had ended, there were still no data released on the study. The findings had not been acknowledged and it was not until the inquiry, when the Canadian Hemophilia Society produced that evidence in public, that the data became known.
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Finally, even after a screening test was developed, the Canadian government and the Canadian Red Cross allowed untested plasma to continue to be used in blood products until once again the physicians in the community insisted that the products be taken off and there was clear evidence that the treatment of the products was not sufficient to kill the hepatitis C.
Overall we feel there is a great deal more the governments need to be doing to ensure there's an adequate level of financial assistance for those infected with HIV and with hepatitis C.
The Chairman: Thank you very much.
From the Newfoundland and Labrador AIDS Committee, Gerrard Yetman.
Mr. Gerard Yetman (Executive Director, Newfoundland and Labrador AIDS Committee): Good afternoon. I would like to thank the chairman and the members of the committee.
Since we are the lowest-funded provincial organization in the country, for the next few minutes I would like to bring you through the programs and the difficulties we have encountered with a very unique infection and also highlight some of the major financial difficulties we've encountered.
The Newfoundland and Labrador AIDS Committee was formed in 1987 as a kitchen group. It was a volunteer group that was responding to the high numbers of infected people in the gay community despite the reports at the time from the provincial government that HIV was primarily a mainland disease and there was no cause for alarm on the island.
With this complacent approach, education and support measures were very slow to be developed. Newfoundland was not different from the rest of Canada at the onset of the epidemic. AIDS was considered a gay disease. The stigma that it was a gay disease forced our provincial government, our denominational educational system, and the business community to respond very similarly to the ostrich. With our heads in the sand, we all hoped if we ignored the issue long enough it would go away. Unfortunately, that wasn't the case.
The volunteer organization very quickly developed and implemented programs in the gay community. In communication with the hemophilia society and the Red Cross it began addressing blood donations by the gay community. Because of this the infection rate in the gay community has steadily decreased since 1987.
By 1989 the NLAC received the first funding under the federal AIDS strategy to develop a coordinated approach to services. However, by this date three heterosexual women had been diagnosed, one HIV positive and two with AIDS.
It became very apparent to us in the community that the information about HIV/AIDS was wrong. We were misled, and health promotion strategies had to be developed very quickly. In 1990 and 1991 very strong links were developed with the community and a strong prevention message was sent out to the general public. This same year we had to develop rural development programs, because the majority of people infected were living in very small communities, isolated communities.
In 1991, 23 people had been diagnosed, with only 8 of that number having homosexualism or bisexualism as a diagnostic factor. It was evident to us that Newfoundland was confronting an epidemic very different from what we were seeing in the rest of Canada.
At the end of 1992, 124 individuals had been diagnosed with HIV or AIDS. Several high school students were diagnosed via school blood drives. By the end of 1992 the community had to develop a province-wide family support program to assist families with the psycho-social issues confronting them and their communities.
Because of the lack of provincial government assistance, a PWA emergency fund had to be established to deal with the high costs associated with the disease. A province-wide education campaign was under way to target the youth of the province and a women and AIDS project had to be developed to address the high number of women testing positive in the province.
Right now there are 228 known cases of HIV and 57 known cases of AIDS in the province of Newfoundland and Labrador. However, this number does not reflect provincial residents who were tested in other provinces, which is particularly common for Labrador, or individuals who return home from major Canadian cities having been diagnosed with HIV.
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As well, Newfoundland has 47 cases pertaining to heterosexual women, giving this province the second highest female infection rate in Canada, but no money to address the problem any further. In addition, the report of sero-prevalence among pregnant women indicated that Newfoundland and Labrador has the highest infection rate in pregnant women of all Canadian provinces, with stats being 1 in 900, versus 1 in 10,000 nationally. As well, so far we have had six babies who have been born with AIDS.
HIV infection in Newfoundland is increasingly characterized by heterosexual transmission that is infecting and affecting our youth. According to our Department of Health, 70% of recent Newfoundland transmission is through heterosexual contact. According to data gathered through the outreach and support programs of the Newfoundland and Labrador AIDS Committee, half of the clients are women who are infected in their teenage years during their first sexual experience or through a steady partner. According to ``Decision Making: a Study of Newfoundland Youth'', 56% of Newfoundland youth in grade 11 have had sexual intercourse at least once, compared to 47% nationally. And according to the ``Canada, Youth and AIDS'' study, funded by this government, 60% have had two or more partners. As well, our Department of Health reports that Newfoundland teenagers have the highest pregnancy and STD rate in Canada. Unfortunately, we're not given enough funding to address these issues.
The socio-political environment in Newfoundland and Labrador does not enhance the prevention method at all. The denominational school system greatly determines what is covered in the classroom, with some schools not allowing any AIDS education. In addition, the province is economically depressed, with unemployment at over 21%, a statistic that does not include the 25,000 fishermen and fisherwomen who are out of work due to the fisheries moratorium, or individuals who have just given up on trying to find employment, especially among youth. Unemployment is a predisposing factor to alcohol and other drug use that could in turn increase an individual's risk for HIV infection. This is something we are now confronting, and we therefore had to develop needle exchange programs and street outreach programs.
The economic climate of the province has hindered support available from the provincial and the municipal governments. Currently, with the exception of $9,000 per year from the provincial government for a 1-800 information line, there is no fiscal support from either level of government for programs. The provincial organization, and the only organization, addressing HIV/AIDS in the province is fully dependent on the national AIDS strategy for its entire operational funding. Community-based programming has cost the federal AIDS strategy $180,000 per year. This funding has saved our government over $500,000 in service provision per year, put out by two employees and 238 volunteers province-wide.
In these times of fiscal restraint the federal government must continue to be the leaders in this epidemic and they must continue the cost-effective programming presently in place. To eliminate the strategy will be detrimental to Canadian public health. It will be detrimental to public health in Newfoundland and devastating to the Canadian government in its efforts to eliminate the deficit. We are presently losing $1 billion a year to lost productivity due to AIDS, according to the B.C. Centre for Excellence. I implore the committee that at this time, with the end of the national AIDS strategy coming in 1998, we cannot afford not to continue to invest in HIV/AIDS community services.
Thank you.
The Chairman: Thank you very much.
The third group is the Canadian Public Health Association. Mary Ann, are you the lead-off person?
Ms Mary Ann Mulvihill (Interim Program Director, OASIS, Sandy Hill Community Health Centre; Canadian Public Health Association): I'll start.
The Chairman: Are the three of you going to speak?
Ms Mulvihill: Just two of us.
The Chairman: Thank you.
Ms Mulvihill: Just for the record, I'm presenting on behalf of the Canadian Public Health Association, but I'm the acting program director of the OASIS program, which is a community-based, integrated AIDS service agency here in Ottawa.
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I, too, would like to thank the committee for the opportunity to speak to you today. The fact that you've invited us here shows an important commitment to the issue of HIV/AIDS and to the broader issue of social justice and the reduction of inequality.
The Canadian Public Health Association and CPHA's AIDS program endorse the need to reduce inequalities in health as both an important end in itself and as an important means to prevent the primary transmission of HIV, to reduce the harm of HIV infection, and to prevent the conditions that put people at risk for HIV infection. Between 2,500 and 3,000 Canadians become infected every year with HIV. Recent statistics from the Laboratory Centre for Disease Control show that younger people are becoming infected. Prevention must continue and evolve if we are to have an impact on each successive generation.
Findings released in Vancouver and Montreal indicate that a surge of HIV infection is now occurring in the injection drug-using community. A recent Gallup poll conducted by the Canadian AIDS Society in September indicated that one out of three Canadians knows someone infected or affected by HIV/AIDS. The news coming out of the conference in Vancouver has led some to believe incorrectly that the new therapies are equivalent to a cure for HIV/AIDS. They are not. Some members of the House may believe that AIDS is no longer a priority health issue for Canadians, but polls continue to show otherwise. I'd therefore like to outline four key issues.
My first point is that HIV prevention works when people both understand the causes and effects of HIV infection and when they have the motivation and the means or capacity to act on that knowledge.
The second important point to remember is that to be effective, prevention and treatment of HIV/AIDS must be put in the broader context of the determinants of health, which include such issues as access to food, shelter, education, adequate income and opportunities to contribute to one's community, as well as - and very importantly - equal access to health care. Those with fewer resources are at greater risk for HIV, and they also have fewer resources to deal with HIV when it occurs. Poverty and HIV are inextricably linked. Thus by reducing inequality, you reduce vulnerability to HIV. By improving the health care of those living with or affected by HIV, governments can reduce both the human and financial costs of the epidemic.
As a third point, a sustained, strategic response is needed. Any effective public health campaign in communicable disease must be long-term and must include elements such as education, disease prevention, health promotion, and the care and support of those affected by the disease.
Finally, national leadership is key. A sustained investment in and commitment to equitable health standards across the country is required now more than ever.
I'd like to offer two key recommendations to the committee, the first being to ask you to expand your leadership role in the reduction of inequality in health to reduce the damage of HIV/AIDS. The second recommendation would be to continue to devote resources and support to the national AIDS strategy and to renew the national AIDS strategy before March 1998.
I'd like to emphasize that there are solutions. There is innovative and successful work occurring across the country right now. We invite you and urge you to continue to accompany us in this work. The OASIS program that Hannah Cowen and I are working with is but one example of the innovative work going on across the country, and you've just heard about another important innovative example going on in Newfoundland and Labrador.
I'm now going to turn the mike over to Hannah, and I'll ask her to talk a little more specifically about what we're trying to do at the OASIS program.
Ms Hannah Cowen (Nurse, OASIS, Sandy Hill Community Health Centre; Canadian Public Health Association): OASIS is a clinic for street people here in Ottawa, and our specialty is HIV and AIDS, both in terms of prevention and treatment. We have people who are concerned about HIV, at risk for it, and living with the virus. Every day our work involves the part of the epidemic that is what the HIV virus does in our bodies, but the most important thing about this epidemic is how we treat each other as human beings, both one on one in our very intimate personal lives and in our public institutions and policies.
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We see quite often that for our clients, HIV is not the highest concern. They are too busy looking for a place to stay, for a safe house for the night or for the week, for enough food to get through the week or the month, for a job sometimes, or for other basic necessities of life and health. So as they let us and as they ask for it, we squeeze HIV care in amongst care directed towards helping to meet some of these other determinants of health that others have spoken about already.
Some of the things that we think would be very useful to support would be more harm reduction responses to substance use in our society and less of the punishment attitude that's common in North America. We can defend that on the basis of research that's ongoing throughout North America and in Europe. We also see that more protection of women and children from sexual abuse and violence is essential if we are going to be more effective in fighting HIV and AIDS. Amongst our clients are many people for whom HIV isn't even the worst thing that's ever happened in their life. If I got HIV, that would be the worst thing that's happened to me, but for many people it's just another in a long list of bad things that have gone on. So as long as that condition exists, I think our struggles will be severely limited.
Policies that encourage individuals to get stronger and that permit them to become more capable of accessing the care that's available in our institutions are useful. Health planners and hospitals are very useful to us as well, as is the reshaping of institutions to help develop programs like OASIS and whatever forms are needed to go beyond OASIS to bring care into people's homes and into the community in other ways. These are also going to be very helpful in our continued work in this epidemic.
I think it's often discouraging to hear the long list of problems that we all face and the interconnectedness of all these problems, but to me that's also the good news that we bring to you. Every policy that helps on any one of these issues is a part of the struggle against HIV and AIDS and the harm it has created for us in our society.
Thank you.
The Chairman: Now from the HIV-T Group, we have Joanne Decarie and a general member.
A Witness (Chair, HIV-T Group): I'll speak first.
Ladies and gentlemen, honourable members, I'm addressing you today on behalf of the HIV-T Group, of which I'm actually the chair. I'm here anonymously because I have not yet gone public with my positive status. I haven't told my family, and it's still very difficult for me.
The objectives of this committee acknowledge that the poor and marginalized segments of society most vulnerable to social ills, violence, poor health, unemployment, etc., are also most vulnerable to HIV infection. To that list we must add women. You will also realize that in whatever way you contract HIV, and whatever your economic and social status at the time, it is almost inevitable that you too will become poor and marginalized. You will become marginalized because there is a universal phobia about AIDS. The general stigma of illness and the tendency to blame the victim have been multiplied manyfold by the fears connected with AIDS, by general ignorance and misinformation about HIV transmission, and by the damage done by early stereotyping. Somehow, the general public has never gotten the message that AIDS comes from a virus and viruses do not discriminate. Presently, the majority of new infection occurs through heterosexual sex, frequently in long-term relationships and marriages.
I wish now to talk about poverty. Many of us lose our jobs in one way or another. Most of us are not sick enough to qualify for a CPP disability, but are not well enough to work full time either. Few of us have disability insurance or spousal family health plans. We lose our homes, landlords still evict us, and many have to move into publicly assisted housing and begin to depend on food banks. Those in rural areas find that they are isolated by fear and mistrust, or they have to move to larger urban centres in order to receive proper medical care. Family lives are disrupted and the security of stable, ordinary life disappears.
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Women who are positive have an extremely difficult time coping with the physical and psychological stresses of the illness while trying to provide decent care for their children and proper food, clothing, housing and other necessities for themselves and for those they are responsible for. They must do this in the face of mounting health costs and shrinking finances. Many women have been forced to choose between feeding their children or feeding themselves. They also end up skimping on health care.
I must just mention the cost and accessibility of AIDS drugs. For example, the AIDS inhibitors such as indinavir, ritonavir, and saquinavir that are part of the cocktail cost between $6,000 and $8,000 U.S. per year. Add to this similar costs for AZT and 3TC, as well as costs for opportunistic infection therapy, nutritional supplements and other complementary therapies and you reach a huge sum of money. My nutritional supplements alone cost me between $200 and $300 per month, and I haven't started to take any antivirals.
So here we are full circle. Anyone can be infected with HIV. If you are poor or marginalized your chances of becoming infected are greater. If you are poor you will get sick sooner, have less access to treatment and will die sooner. Even if you start off with adequate resources, AIDS can impoverish you. We are all in the same boat and discriminatory labels must be discarded. What we need to do now is provide affordable, equitable and accessible health care and treatment to all persons living with HIV and AIDS.
In our printed submission, we present our recommendations in greater detail. There are about six pages worth. Briefly, I'd like to say just these few words. We need more women-specific research and a concentrated program towards early detection of the human papilloma virus and cervical cancer in positive women. We need to ensure an adequate living standard for all persons living with HIV/AIDS in Canada. We need to develop effective campaigns to prevent transmission of HIV, particularly to young people who think it can't happen to them and to women who are often powerless to prevent it. We need countermeasures against provincial cuts in the delivery of health care and social services. We need a commitment from the federal government to renew an increased funding in the Canadian AIDS strategy.
I thank you very much for your consideration. I would like to introduce Joanne.
The Chairman: Thank you very much.
Joanne.
Ms Joanne Decarie (Member, HIV-T Group): My name is Joanne Decarie. I'm HIV positive from a blood transfusion I received back in 1985. I have a 7-year-old little daughter. Her name is Billie Jo Decarie. She was born on June 19, 1989. She is also HIV positive. My husband Bill tested positive in September 1992.
I just want to add to the HIV-T transfused group. Dealing with a disease such as AIDS also means dealing with discrimination. Our society does not understand AIDS hurts everyone. In our tremendous efforts and in the efforts of many victims of our blood system, we have achieved some level of understanding. The message many of us have been able to leave is HIV affects thousands of innocent people who relied on a health system that failed.
We need to be heard as a community. We must educate the public at large about AIDS and how it hurts everyone. Living with HIV is among one of the greatest tasks. No security, dwindled income, expenses rising, debts growing, health declining, energy lowered, frustration, anger, fear and discrimination have become a way of life. What we deal with day in and day out is unbelievable and unbearable. Yet we try to make everyone's lives as normal as can be. Thank you.
The Chairman: Thank you very much.
At this point we go to a round of questions. We start with the opposition.
Before I do this I want to warn everyone that at 4:30 p.m. the United Way party is going to start down this hall. We may have trouble conducting our meeting, and since every committee in the House of Commons is meeting today, there are no other rooms available.
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We give lots of latitude to the person answering the question. We tend to be a little tougher on the person asking it.
Mr. Ménard, you have your first ten minutes.
[Translation]
Mr. Ménard (Hochelaga - Maisonneuve): I'll agree with you there, Mr. Chairman. First of all, I would just like to say that I hope all the members of this committee, whether in government or in opposition, clearly heard your appeal.
There is a common theme running through the presentations given today: we must continue to battle AIDS and to help victims. We will not win the battle unless the National Strategy is maintained.
This is not, in my view, a partisan or an ideological issue. One objective comment was repeatedly made at the Vancouver conference which I attended: the government must continue to allocate $40 million annually, more if possible, but a minimum of $40 million annually to maintain the five components of the National AIDS Strategy with which you are familiar.
This point was further driven home when the witness from Newfoundland, Mr. Yetman, reported that the only provincial organization addressing AIDS in the province was fully funded by the Strategy. I had heard this and I hope to visit Newfoundland by year's end to see the situation for myself.
On a number of occasions, I have heard people talk about the situation in Newfoundland which is unique. While overall, the number of infected persons is low, there are nevertheless signs of a heterosexual epidemic, as you mentioned. I think it would have been worthwhile for our committee to travel to Newfoundland, but I understand that circumstances prevented it from doing so.
I have six questions for the panellists and I will go through them one at a time.
Do you agree with me that recognition of same-sex spouses would be one way for us as parliamentarians and as a society to fight AIDS and support its victims?
As you know, we debated the issue of recognizing same-sex spouses recently after I had tabled a bill in the House of Commons. When we began our work, we were told that compared to the situation in the 1980s, Canada and Australia were the only countries where people were contracting the AIDS virus at a younger age than was the case back then.
I maintain that one interesting way to fight AIDS - because on a Canadian scale, AIDS is a homosexual reality, the only exception being communities such as Newfoundland - is to send a clear message that we are prepared to be tolerant of the gay community and to recognize same-sex spouses. That is my first question.
Secondly, I would be interested in hearing your views on the Canada Pension Plan. Our committee will certainly be making very concrete proposals because a number of witnesses have told us that in its present form, the Canada Pension Plan discriminates against AIDS sufferers. The disability referred to in the act is of a permanent nature, whereas in reality, AIDS sufferers may be able to wash walls, paint the house and garden one day, whereas the next day, they can't get out of bed.
I believe you would be doing the community a service by indicating very clearly to the committee that you would like it to adopt a unanimous report, if possible, at the end of its proceedings, one recommending to the Canadian government that it amend the Canada Pension Plan.
Thirdly, two of the witnesses spoke about access to drugs. Clearly, this is a major concern because a whole new generation of drugs is being developed and it is quite possible that in two years' time, AIDS, once a death sentence, will become a chronic illness. This doesn't make the situation any less urgent. When I speak to certain groups, people get the impression that I'm trying to take the drama out of the situation, but this is certainly not my intention.
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However, even if AIDS were to become a chronic illness, which is totally within the realm of possibility given protease inhibitors and multiple drug combinations, do you agree with me that when the Standing Committee on Industry proceeds in January to review the Patents Act - that is Bill C-91 which was passed by the Conservatives and which was designed to make Canada competitive in the patents field - we as parliamentarians should call on pharmaceutical companies to ensure humanitarian access to drugs?
During the first week of December, I will be tabling a bill to this effect and I am hopeful that the Liberals will support it. Politics do make strange bedfellows. We may not always agree, but on some issues, we do speak the same language. I would be interested in hearing your views on the issue of humanitarian access to drugs.
The very important testimony given by Mr. Yetman and the anonymous witness remind us that discrimination does exist in society, that not everyone starts out on an equal footing, that when a person is poor, he runs a higher risk of dying at a younger age and suffers greater hardship. You also reminded us, as did the background paper that we received, that in Newfoundland in particular, widespread homophobic behaviour further impedes our efforts to wage an effective battle against AIDS.
Since you were not very specific on this issue, could you tell us how, through the strategy, we as parliamentarians could help to fight homophobic behaviour? Do you have any specific suggestions to make to us?
This concludes my questions, Mr. Chairman. As you can see, I was quite reasonable, as always. However, I hope you come around to me again if there is any time remaining.
Some hon. members: Oh, oh!
[English]
The Chairman: Who would like to start? Is there any particular area you care to comment on?
Go ahead.
Mr. Yetman: Mr. Ménard, thank you very much for your questions. I'll do my best to try to get through them. Hopefully, having been in Vancouver with you and discussed HIV and AIDS, I can make some recommendations that may help you.
I'd like to start off with your last question first. This was on access to drugs. I think one of the biggest injustices in this country is the lack of access to drugs between provinces. The reality is access to drugs in Newfoundland depends solely on whether the government is going to pay for them. If not, people don't have access. We are not a large population. Therefore, we do not fall into any of the drug trials because we're not a large enough sampling group for pharmaceutical companies.
If nothing else was done in AIDS, one of the things I would love to see happen is equal access, regardless of socio-economic status, for all Canadians who are infected. I would like to see you put a bill forward and I would like to see the Liberal government support you in your efforts.
Secondly, on the Canada Pension Plan, I guess my only recommendation is that the federal government start working with provincial governments to ensure people are also qualifying for other provincial programs such as social welfare and social drug cards. Unfortunately, many of the clients I work with every day are no longer eligible for many of the programs under provincial terms that keep them alive once they become eligible for the Canada Pension Plan. I would like to see the federal government work more closely with provincial governments in this area.
Number one is something very personal to me as a gay man. I think our only way to fight AIDS in the gay community is to provide equal rights and to eliminate all of the stigmas.
Although throughout my speech I talked very much about the heterosexual transmission, we do have a homosexual infection rate in Newfoundland. It is low, but one of the things we're seeing is the people who are becoming infected are the young gay men between the ages of 15 and 19, long before they have access to a community where they can belong and where they can find empowerment.
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It's devastating to see that the young gays and lesbians in our high schools don't have access to education. They're not treated as human beings. They come out of our high school systems feeling like elephant men and women. They come out disempowered before they begin life, and I think same-sex benefits -
We have major problems. When we look at a province like Newfoundland, it is one of three where homosexuality is not even recognized under the Code of Human Rights in the province.
We definitely need the Government of Canada to take a leadership role in this and work with provincial governments to follow suit.
Thank you.
Ms Cowen: I could talk to a couple of questions as well. We would certainly see recognizing same-sex partners and any other kinds of messages that go out through our policies, our legislation and our personal actions, or your actions, which have the power of parliamentarians, to reduce homophobia and other discrimination as one of the items that research is showing to us actually makes healthier communities, and communities with lower HIV infection rates. That's one of the pieces of research that came out of Vancouver and is covered in some detail in the CPHA report.
It's part of what I said earlier about how all our problems are connected. The different ``isms'', whether it's sexism or homophobia and heterosexism are all part of what makes a world in which HIV continues to thrive and multiply.
We also know from research among young people aged 15 to 24, where there is the most rapidly rising percentage of new cases, that we cannot give the message to gay youth and children as they're growing up that they are evil and awful and worth nothing, and then expect them at age 16 or 17, when they become sexually active, to take care of themselves and protect themselves from a nasty virus. It doesn't work. I think we could strongly support any movement you might make in that direction.
I agree about the Canada Pension Plan and all the income support programs we have. HIV has parallels with other illnesses, but it does present some specific problems, such as that roller coaster you mentioned, for people who would benefit greatly from, say, part-time work when they are able to, but because they have gone through a large application format for their Canada pension, it's really not worth it to them to lose it. We all suffer in that area.
On access to drugs, I would say there are many things I would like to see reviewed in Bill C-91, but I certainly would say the more compassionate and humanitarian release programs we get the better. Drug companies have made a contribution to that. I think they've been pushed to that by the AIDS movement historically, but that is a part of what we have, and the more the better.
I second what you said about the inequities from province to province. We particularly see that in a border town like Ottawa. We see some of those issues quite clearly - drugs that are covered in Quebec but not in Ontario, and vice versa.
The Chairman: Does anyone else have any answers to those questions - Joanne or the other witness?
A Witness: We address this issue a little in our submission, but we're a small agency and we're particularly a little naive, so this may not be what you're looking for. We'd like to see the Canada Pension Plan disability benefit maintained - I think that may be in question - and we would like to see the requirements broadened. We think you could use the Canada Health Act and health transfer payments to the provinces and territories to encourage treatment access for all.
We believe there should be a plan of action in response to the present catastrophic and devastating illnesses, and possibly future ones. We think that's really important, because if you review the history of transfused tainted blood, you see there was nothing in place to bring a response.
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We'd like to see the requirements for eligibility for the disability tax credit loosened and disability redefined in regard to the specialists of HIV and AIDS infection.
Some people are also caught in a time problem, where they can't qualify because of a delay in being diagnosed, becoming ill or things like that. As you said, they're able to work and then they're not able to work, so it becomes a problem.
On health transfer payments to the provinces, you could use those to make sure the provisions of the Canada Health Act are followed and to ensure equitable, affordable, accessible health treatment. There have been some pretty harsh provincial measures undertaken recently, and it may be up to the federal government to use transfer payments to alleviate some of them and make sure there's a social safety net for all Canadians.
I think that's all I have to say.
The Chairman: Rose-Marie Ur, I believe it's your turn.
Mrs. Ur (Lambton - Middlesex): Thank you, Mr. Chair.
Thank you for your presentation. I'm sure it's difficult to present a personal aspect to this subject. My heart goes out to the presenters on that.
Reading through some of the briefing material from the HIV-T Group, you state:
- Design and deliver prevention messages, with clear facts about the heterosexual spread of HIV
as well as other modes of transmission -
- Promote abstinence or barrier protection for young women.
- Teach women about condom use and make condoms available.
A Witness: We've often said they have to be delivered at the grassroots, either at schools -
Mrs. Ur: Where else would you suggest?
A Witness: We've found that the trust isn't there.
Mrs. Ur: Trust in whom?
A Witness: I guess it's hard to explain, but it's sort of a peer thing in where you feel safe. Messages that come from Health Canada aren't the same as messages that come from your neighbour or from a group like The Teresa Group for children, which can create a safe environment and a learning process, street clinics for homeless street kids, and things like that.
Mrs. Ur: Do you have any idea how many groups are out there? We've had so many presenters while we've been on the AIDS committee, and I've been here from day one, basically. I've only missed a few meetings. I couldn't even begin to tell you how many people have presented.
Is that really the right way to go, or should we have one group going on all aspects? It just seems that everyone is springing up, and we don't know whether there are questionable ethics - ethics may not be the right word - whether they're promoting their cause for the right reasons, whether the recipients are really the true benefactors, or whether these people are there for their own benefit. I hate to say that, but we had a case in question in the London Free Press not too long ago in southwestern Ontario where an AIDS group was shut down until the accounting was done.
This is the sad part. Are the people who really need the dollars getting the best out of these different organizations?
The Chairman: Joanne, I'll let you or the other witness finish with that question and then we can go to anyone who wishes to answer.
Ms Decarie: As you said, you have sent the material out there for the places to learn about it. I have the same view as our chairperson; it should be more in places where children actually feel good about where they go, such as The Teresa Group.
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Mrs. Ur: How many people out there would know that? Is there something more accessible a child who may not be HIV positive could go to, just a learning experience to educate themselves?
Ms Decarie: I understand what you're saying. I'm sorry, I think you'll just have to continue to print the material and hope. I don't know how to say the children will read the material.
Mrs. Ur: This is what I'm trying to say. You can have the best legislation, you can have the best information, but you can't legislate common sense. You can take them to water, but you can't make them drink.
Ms Decarie: That's right.
Ms Wong-Rieger: I would like to go back to the latter question you asked, which I think is a good one. The fact is there are many community groups out there. I don't think the problem is that there is a proliferation of groups or there are too many groups or the groups are not chequered.
I've worked a lot with many of the community-based groups, with Health Canada as a researcher, as a program evaluator, and as a facilitator through the Canadian Hemophilia Society. We've developed a number of evaluation and resource books to work with the community groups. I think much of the problem out there is from the fact that even though we recognize there has been a five-year strategy, with $40 million, many of these groups are caught forever scrambling for resources. There's no secure base of resources. Many of the groups are given project money without adequate resources.
Most of the groups I work with I have seen take a dollar and deliver to you not just $10 worth of work but $100 worth of work. We have asked groups to do things with very limited resources, relying on volunteers, and then when the groups have been able to be quite effective we have taken away that money, because at that point the project has evaporated and there's something else they're forced to do in order to address a new issue to try to get those moneys.
So yes, there may be a lot of groups there, and yes, there may be many groups that are scrambling, trying to make the best use of their resources and sometimes getting caught in trying to do both administration and program delivery. Many of our people are stretched, trying to cover those bases.
The Canadian Hemophilia Society is a unique model, in that we have a national structure, we have a provincial structure, and then we have a community-based structure, which works very much in an integrated fashion. Much of our work, for instance, has been to develop and pilot a program at a national level, to evaluate that program, to disseminate it through to our provincial levels, and to ask those who have local chapters to carry that program forward.
What we can provide is the guidance and development materials. We can provide evaluation. We can provide training to help carry out those programs. But we have to rely very much - As the HIV-T representatives say, the delivery of it is at a very local, community-based level.
The problem is the resources available at that community level. Many times, as Joanne says, we give you the money to develop the materials; we don't give you the money to go out and successfully deliver it. We give you money to develop a pilot, and then when the pilot has proven to be successful we don't give you the money to continue it. We say instead, your job now is to find community support to continue the effort. I can't do both. I can't deliver a program and raise money. Give me the money and let me do what it is that I set out to do, what I gained the expertise to do.
The Canadian Hemophilia Society has tried very hard, because we are a national organization, to try to cover off some of that, and there are models other community AIDS groups have developed. Newfoundland just gave you an example of a tremendous model. It has a provincial base and then local community efforts. What Gerrard has been able to do is exactly that, but he's doing it on a shoestring, with no guarantees. He has been asked to fund-raise, and to integrate with the corporations, and to do community awareness, at the same time as he's doing primary education and prevention. It's not adequate.
So yes, a lot of money seems to be out there, and lots of groups seem to be out there. I think the answer is to try to support these groups sufficiently and not to say, scramble and compete among yourselves; not to say, we'll give it to you for a little while and then you do the best you can.
The Chairman: Mary Ann.
Ms Mulvihill: I just want to build on what has been said.
I think what has made the HIV/AIDS movement so successful is the fact that it has been based on hours and hours and years of volunteer work and it's largely a community-based movement. That means lots of small groups. That's been a large part of its success, and every success comes with some limitations. So I think it's really important to recognize that the number of groups you're seeing have hundreds of volunteers with them.
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I think the other issue is that the reality is that HIV/AIDS is pervasive. It's everywhere. Part of what happens is that every group that's trying to deliver health care, social services, any kind of support, ends up dealing with HIV/AIDS. It's pervasive in our society; that's the reality. To be effective, programs have to begin where people are, and where people are is on the street.
In our case, a lot of them are on the street. They're not stably housed. They're not going to come to meetings. They're not easy to reach. So all of that work is very labour-intensive. The movement has coped with using volunteers, but it's an extremely labour-intensive way to be effective and, I would also add, a huge investment, and a very positive investment when it's made.
On the point of the agency you mentioned that was in the news, I'm not going to name the agency because I don't have the title exactly right. If you know the title, I stand corrected, but I'm not going to put it into the record in case I make an error. But I think what's important to point out is that the AIDS movement itself exposed that and brought it forward. That's an important point to remember, because we realize resources are so precious and we use them so well that we ourselves are putting it on the floor that there may be issues out there.
The Chairman: Thank you very much.
If any other witnesses want to come in on that question, you are free to do so.
Mr. Yetman: Actually, I really don't have a lot to add because I think Durhane and Mary Ann really addressed the issue. But one of the things I'd like to say to the committee is that if it's taken for granted that condoms and education are out there, you are so wrong. It's limited. There are many, many barriers.
For example - and I can only speak on behalf of the province in which I work - AIDS education is not in the schools because religion blocks it; condoms are not in the schools because church-based education blocks it. You have to be 16 to buy a condom in a pharmacy.
These are all things that prevent access to the simple things that can help at least slow down this epidemic. Let's not take for granted it's out there. It's not. That's why we need to continue our efforts, and that's why we still have to jump over many, many hurdles. I think one of the areas is mandatory education. We're dealing with a public health issue, not a moral issue.
The Chairman: Hannah.
Ms Cowen: Perhaps I can speak to that a little, because I've had experience in Nova Scotia, Ontario and British Columbia in the time since I've started doing AIDS volunteer work as an education speakers' bureau person around HIV and sexuality. It's very spotty.
There were schools in Ottawa that asked us to come back over and over again. It was the same in Victoria. Then there were other schools where we were not allowed in at all to give the message. The hard reality for us is a point that was made earlier: we have to keep getting better at it.
I'm not saying we don't have ways to go and new ideas we have to learn. We still don't know all the ways to help people take on safer behaviours. But when we have success with one group of people, we have to be able to repeat it for the next generation of people coming up behind them - the baby boys who will become gay men, or the baby girls who will become abused women, or whoever is involved in that. We have to keep finding new and better ways to reach them. That is part of what makes it frustrating, because we think, gee, we did really well with this one community, and we have.
I think the epidemic in Canada would be even worse than it is were it not for the work we've done on education and prevention and care, but we have to keep doing it over and over.
The Chairman: Thank you.
Mr. McKinnon.
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Mr. McKinnon (Brandon - Souris): For the record, I come from an education background. I was in the same high school for 31 years. I'm dating myself. Through the school unit we attempted to allow for condom-dispensing devices to be in high schools. The point that was made about outside groups preventing them from staying occurred. The board wanted them, the teachers and staff saw the need, but the community turned it down. I think to this day it's still in a similar situation. I don't see any progress on that sociological difficulty.
At that time Manitoba had a mandated program in the high schools, although it was very limited. Information was there for everybody. Classes were to be held.
My question is this. Is this a unique circumstance for Manitoba or are other provinces doing the same thing, attempting to have an educational preventive program?
Ms Cowen: Yes, other provinces are trying to tackle this subject, with varying success. In Newfoundland the issue of the role the church plays is clear. In British Columbia it's quite different. It varies so much from community to community, never mind from province to province. One town will have condoms available in the high school through the school nurse. Others will have none at all. It also varies classroom to classroom, because of course teachers have different levels of comfort with talking about sexuality and issues that involve a life-threatening disease and all that.
It's very complicated, and we long for simple solutions. We wish we could give you three simple things you could do that would fix this.
I think what we have to accept is some of the complexity. All those different groups that are out there: yes, we probably do need them. That's one of the things.
I've reminded myself of a note about education, teaching women about condoms. That is still one of our flaws. In many of our education messages we focus a lot on women and not on the men who need to wear the condoms. There is a role for women learning about them, of course. That is one of the simple pieces I think we can concentrate more on. As we get more female condoms and better female control barrier methods, that's when the responsibility perhaps should shift. Right now I think the biggest gap is in getting men to wear condoms.
The Chairman: Mr. Yetman.
Mr. Yetman: To address your issue, I think, having been a board member of the Canadian AIDS Society, almost every group in this country has tried various ways of getting into the school system or helping boards to develop programs. I know we're trying to work with the provincial government in getting the government to come down with some type of legislation for mandatory health education.
That is probably part of the problem. We're focusing on condoms and we're focusing on sex. AIDS is much broader than that. If I get the opportunity, when I go into a classroom I have to address drugs and alcohol. I have to address STDs. I have to address violence. I have to address poverty. I have to address self-esteem.
We don't have self-esteem programs in our schools. No matter what our teenagers have, how are they going to do it if they don't have self-esteem? We can give them all the knowledge in the world, but they're not going to reach the means we have. We need to develop a full-scale education program for our youth, one that includes AIDS.
Mr. McKinnon: I don't know which of you presenters used the expression ``winning the fight against HIV and AIDS''. My question immediately was what does ``winning'' mean? Does it mean not allowing the rate of infection to increase, or what?
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A Witness: Can I go back to the last one? We have a lot of suggestions.
I would like to raise the question of how successful our anti-smoking campaign towards youth has been. It's not a drinking campaign, a drunk-driving campaign.
Reaching the people seems to be a major problem, and I don't think there are any easy answers.
Mr. McKinnon: A Coca-Cola ad. They never stop hammering.
A Witness: I think that's what you have to do, with huge amounts of money.
Do you know Sue Johanson's sex show? She or someone like her could do a wonderful job at this reaching, because she already has the audience. She has the common touch. She has become very, very popular. We can't do anything from above them. We have to go and reach out to them, find some way to gain their trust. She's a special individual, and she can do it. I think that's what you need.
Maybe somebody else would like to answer your last question.
Ms Cowen: I think perhaps it was me who used that phrase. To me there are various parts of what winning the fight would be. Obviously a medical cure - but it would be addressing those other determinants of health and making some progress on the issues of discrimination and poverty that were around when we had syphilis as an untreatable sexually transmitted disease.
Syphilis complicated our issues of human sexuality. It complicated our issues of child sexual abuse. It led to many of the same problems and discussions that we have again with HIV. My big concern is that until we do better at addressing the issues of poverty and discrimination that we are talking about today, we may find a medical cure for HIV, but we will need it for when the next illness comes along, the new virus, the new catastrophe, as was said earlier.
That is to me the very burning question. The fight against HIV isn't only the fight against HIV. When we look at it like that, it's too narrow. So everything we do - I like to keep stating the positive things - all the steps and all the measures we take are helping our world, our country, our community, for the future as well as for today.
Ms Mulvihill: I was just going to say, to borrow a term from the 1960s, I believe the war on poverty is perhaps the war we're fighting.
As Hannah was saying, HIV/AIDS is the reality we're dealing with today, but there are things knocking on the door. Drug-resistant TB is going to be an interesting thing we're going to be dealing with really soon. They are all interconnected. That's the bad news, as Hannah said. The good news is that every step we take forward on HIV/AIDS is also dealing with those other issues.
[Translation]
Mr. Ménard: Did I understand correctly that the witness from Newfoundland is suggesting that we recommend in our final report that the Canada Pension Plan be amended, because if a person receives a disability pension under the CPP, that person is excluded from other existing plans in Canada, including those in effect in the provinces? Did I understand you correctly?
[English]
Mr. Yetman: That's correct. Basically our recommendation was that in any changes you would be looking at with regard to the Canada Pension Plan, some work should be done with provincial governments regarding a person's elimination from provincial services, i.e., department of social services programs, which most drug plans are run through.
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For example, many of the clients I work with in Newfoundland, once they become eligible for CPP, are no longer eligible for the drug card, are no longer eligible for the food supplement. It eliminates them from very important provincial programs, and in many cases it also makes the person wonder whether they would be better off in the provincial welfare system versus the Canada Pension Plan. Too often it comes down to a choice of dignity, not a choice of health maintenance.
So I really think a lot of federal-provincial work needs to be done.
[Translation]
Mr. Ménard: I think it would be awkward for the members of this committee to recommend total harmonization, but would it be possible, and ultimately desirable, to recommend that, as is the case in Quebec where the Régie des rentes applies in lieu of the Canada Pension Plan and therefore there is only one disability program, with respect to transfers to the provinces, very clear provision be made for disability and that in each of the provinces, there be but one provincially administered disability program? I believe one of you made a similar recommendation. I think this would be a far more interesting formula than one where the federal government administers the Canada Pension Plan.
[English]
Mr. Yetman: I think one of the recommendations from the lady from the transfused group was to take a look at disability, and increasing disability, to meet the needs of people living with HIV, possibly by looking at increasing the amount, based on the fact that someone has claimed CPP because of HIV or AIDS, because I think in almost all provinces they are eliminated from a lot of provincial services. So maybe consideration for an increased payment of some sort -
[Translation]
Mr. Ménard: You will recall that when the Progressive Conservative party was in power, a party which, to all intents and purposes, has vanished from the political landscape - I know that some of my colleagues will be saddened to hear this - it revised and adopted Bill C-91 which made provision for patents issued by Canada's Commissioner of Patents to be competitive. The bill was to remain in effect for 20 years and the 600 or so pharmaceutical companies in Canada undertook to invest 10% of their profits in research and development, or approximately $500 million by the year 2000.
When you lobby the pharmaceutical companies on behalf of the people whom you represent, have you witnessed any situations or do you have any evidence to present to this committee to support your claim that they have been bad corporate citizens and have refused access to drugs or refused to participate in clinical trials?
[English]
Ms Cowen: I'm not sure I would like to use the words ``bad corporate citizens''. I think our concern about Bill C-91 and how it applies in this case is first, no requirement - and I think we spoke about that when we talked about compassionate access - no preference, is given by the government to companies that will indeed make humanitarian access to drugs part of their submission. Governments could go a long way if they did make that a significant portion of the review of drug applications.
The other thing that is a major concern for us with the Patented Medicine Prices Review Board, of course, is that it has no genuine power to force companies to abide by the commitments in Bill C-91 to research, to supporting communities. Certainly we know there is a 10% commitment. Unfortunately there are no teeth in the Patented Medicine Prices Review Board to force the company to acknowledge what kind of research is being given or exactly how much is being given to that research, and there is no requirement affecting the types of research that should be made available.
Too often they are things they would have done anyway. Secondarily, too often clinical trials that are not of real benefit to the people are also qualified as research. I think if we indeed want Bill C-91 to do what it was supposed to do, we need to add some more teeth to the Patented Medicine Prices Review Board.
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[Translation]
Mr. Ménard: We had not met until today's meeting. The bill that I intend to table during the first week of December takes a somewhat similar position. However, you must be grappling with one problem. The Patented Medicine Prices Review Board is a quasi- judicial organization. You have to realize that regulating the price of drugs is not the responsibility of the federal government. It has no constitutional authority to regulate prices. However, the federal government is responsible for issuing patents.
Pharmaceutical companies, in particular those belonging to the PMAC, the Pharmaceutical Manufacturers Association of Canada headed by Judith Erola, a former minister in the Trudeau government during the 1970s, have made a commitment which is not a legal commitment per se.Bill C-91 does not specify that they are under any obligation to invest 10% of their profits, or$500 million. The industry made this commitment in good faith, on the basis of testimony presented during consideration of Bill C-91 by parliamentarians of the day. I was not there at the time. From the moment Bill C-91 was deemed to be in the public interest, pharmaceutical companies made this commitment.
Generally speaking, it would be difficult to say that the industry has not kept its promises. We would have a great deal of difficulty proving that it didn't really do any research because what the Patented Medicine Prices Review Board in fact does is assess the research efforts of patent holders. Obviously, some pharmaceutical companies do not hold patents, but do research nevertheless.
When the Standing Committee on Industry examines this matter further, you will see that the definition of research used by the Patented Medicine Prices Review Board - I can send you the definition if you are interested - is the same as the one used by Revenue Canada when it awards a tax credit for experimental research and development.
Considering that the pharmaceutical industry and the banking industry are the two sectors which fared the best during the last two recessions, I think we should ask pharmaceutical companies to make an extra effort to ensure that people have humanitarian access to drugs. A battle is looming and I hope that you will be there when the time comes to wage it.
The pharmaceutical industry is a very interesting topic of discussion. You will no doubt have an opportunity to make a presentation to the Standing Committee on Industry.
[English]
The Chairman: Madam Mulvihill.
Ms Mulvihill: I want to reinforce the issue of pushing for humanitarian access to drugs. It is a very important one. I also think it's important that we push for it across all sectors, not just HIV/AIDS drugs. It's important to many issues and many diseases, and the pharmaceutical companies can likely afford that.
I have a question for you. I wonder if in the bill there is any thought of reducing the length of the 20-year patent.
[Translation]
Mr. Ménard: My bill will be a private members' bill and I am hopeful that the Liberals will support it. However, I would not be comfortable disclosing its contents at this time. I can tell you, however, that this bill will move on to the Senate and that it will be voted on. I plan to table it during the first week of December, in conjunction with World AIDS Day. I am very proud of this initiative that I have been working on for the past year. I am confident that it will not prove unconstitutional. Even though, as you know, private members' bills have little chance of being passed, I am confident that this will be a happy exception.
[English]
Mr. Volpe (Eglinton - Lawrence): Excuse me, Mr. Chairman.
The Chairman: Yes.
Mr. Volpe: You've given Mr. Ménard the opportunity to wax eloquent on his views of what happens with Bill C-91 and to do a little bit of politicking as well, and I'm sure it is appreciated by him.
The Chairman: He does it well.
With that in mind, I want to take this opportunity to thank the witnesses. I know you keptMr. Ménard on the edge of his seat.
Once again, thank you very much. You've given us some very interesting and timely advice, and I thank you for your time. I hope we've given you an adequate amount of time, and we hope we've heard all your views and that something good will come from it. Thank you very much.
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We're adjourned to the call of the chair.