[Recorded by Electronic Apparatus]
Tuesday, May 9, 1995
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[Translation]
The Chairman: Good afternoon ladies and gentlemen, and welcome to the Sub-Committee on HIV/AIDS of the Standing Committee on Health. Our witnesses this afternoon are, from the Coalition des organismes communautaires québécois de lutte contre le sida, Mr. Jacques Gélinas, president of the organization, Mr. Roger Malenfant, vice-president, and Madam Lyse Pinault, director general.
You have already appeared before our Sub-Committee and you know our procedural rules. You will have approximately 10 minutes to make your presentation in order to allow as much time as possible for questions from members of the Sub-Committee. Mr. Gélinas, you have the floor.
Mr. Jacques Gélinas (President, Coalition des organismes communautaires québécois de lutte contre le sida): Good afternoon, Mr. Chairman, members of Parliament, ladies and gentlemen. COCQ-SIDA is a group of 31 non-profit community organizations which fight AIDS and which are located throughout Quebec.
The mandate of our organization is to represent member groups in order to promote commitment as well as concerted action in areas of common concern. The role of our organization is to give a profile to the knowledge, wisdom and contributions of community and non-government organizations in the battle waged against AIDS, and to ensure that those organizations get to participate in the preparation, implementation and follow-up of health policies in this area.
COCQ-SIDA wants particular regional characteristics to be taken into account and wants the regions to have equal access to care and services. In pursuing these objectives, it supports the development of its member organizations, facilitates the creation of new organizations in Quebec and welcomes new members. It also facilitates and encourages participation in community action by people with HIV/AIDS.
For the past five years, the Coalition has been the general spokesman for Quebec's community organizations.
Quebec's community groups are to be found in 11 of Quebec's 16 health and social service regions.
There are 10 community homes in four of the most affected regions. They receive persons with HIV/AIDS who are no longer capable of living independently or who have reached the terminal phase of the disease.
These homes not only offer all the health care and services those persons need, but also provide a life-affirming environment for residents and those close to them. Whether they come there for a brief stay or to live out their last days, those who find shelter in those homes have an environment where they are surrounded and supported by volunteer or paid professionals who invest their strength and energy in caring for them.
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There are two facilities that provide accommodation in supervised apartments, that is to say small apartments for persons who are still independant or semi-independant.
There are also, throughout Quebec, 19 community groups active in the fight against AIDS that provide a wide range of services to the public.
In areas outside the Island of Montreal, organizations are involved in education and prevention and provide services to persons with HIV/AIDS and to those close to them.
In Montreal, the organizations have developed more specific services, and some provide services to women, children, families and loved ones, gays and ethnocultural communities, while others concentrate on providing education and prevention services.
A word about the human resources of those groups. All together, these groups employ approximately 150 persons on a permanent basis and more than 2,500 volunteers. If you want to calculate the dollar value of the work performed by all of these citizens, it is apparent that the $667,800, which the Canadian Government invests in supporting community action in this area, is matched by $5 million in free time generously donated by the population. This evaluation is based on a $10 hourly wage, which is what a cloakroom attendant at the Montreal Casino earns. This of course does not include the money collected through the fund-raising activities of the community organizations.
The federal government's AIDS community action program project funding is also a source of funding for those organizations. However, that program only funds short-term projects. It may be of particular interest for new ventures, especially in the education and prevention fields. That kind of funding also allows community organizations to develop model projects, i.e. projects which can be used by all their partners. Such one-time funding is seen as increasingly desirable by the organizations since it allows them to be creative without constantly having to reinvent the wheel.
Unfortunately, the limited resources available to support our organizations mean that we must resort to that program to put an infrastructure in place which may have to be dismantled after its completion if we are unable to find other financial resources to replace the ACAP project funding.
Given this problem, we would really like to see a decrease in project funding and a corresponding increase in core funding, with preference being given to model projects or joint projects.
A few words now about the HIV/AIDS situation in Quebec. According to the AIDS Study Centre, as of December 31, 1994, thee were 3,213 cases of AIDS reported in Quebec. However, because of the problems of under-reporting and time lapses between the diagnosis and the date when the report is received, epidemiologists estimate the number of cases to be closer to 5,160.
Since there is no mandatory reporting of HIV/AIDS cases in Quebec, we can only extrapolate as to the number of HIV positive cases. According to researchers, once again, there are about 15,000 HIV positive people, more or less. This means that we are among the three provinces that are most affected by this epidemic.
Since 1979, 85.7% of the cases identified have been men and 82% of those are in the 20-to-45 age group, the most productive years in the life of an individual. Quebec is also the province where the largest number of women and children are affected by the disease.
Seventy-six percent of these live in central Montreal. However, it is hard to determine how many of these people have moved to Montreal because it is easier to obtain care and services there, because of the expertise that has been developed there, or, especially to escape the ostracization they suffered in regions where the public population is poorly informed, if at all.
It is fair to say that we are facing a real epidemic. In the mid-1980s, it seemed to affect only one sector of the population, that of men who have sexual relations with other men. That community went to work and as a result of its efforts, in the beginning of the 90s, thee was an increase in safe-sex practices in the gay community.
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Unfortunately, the HIV virus subsequently spread to women and intravenous drug users and this has created a need that has not been met for lack of additional resources. May I remind you that there are no new funds associated with phase II of the federal government's AIDS strategy. Further, the amounts allocated in 1994-95 were not all spent. We find this appaling.
This is what we can say about the situation in Quebec at this time: in the gay community, safe sex practices have increased considerably among those aged 25 or over, but are decreasing among those under 25. Montreal is the only city in North America where the incidence of the disease in drug addicts is remaining constant or increasing slightly.
After much thought and lengthy debate, the five major Canadian partners agreed to recommend that phase II of the National AIDS Strategy be a $54 million effort. The then Minister of Health announced that the funding would be renewed at the same level, which was $42 million. That funding renewal did take place but with changes in the allocation of funds to the various sectors.
There was to have been an increase in the money allocated to community action. In Quebec, there was to be an annual increase of $82,500 in the funds allocated to the AIDS community action program core funding initiative.
At the beginning of phase I, nine community groups were funded by Health and Welfare Canada. By the end of that phase, 22 community organizations were seeking funding. Were it not for the dismantling of a large Montreal group, which received $150,000 in funding before its collapse, we could have supported only two or three additional organizations.
In Quebec, decisions on the allocation of subsidies are always taken jointly with federal government representatives, as well as with provincial government and community group representatives. This method has allowed us to overcome the difficulties engendered by scarce financial resources and is a partnership model to be developed and emulated.
Such joint management of files yields positive results even though it can mean a lot of work for us and for government officials. Occasionally, we have challenged certain decisions. A good example was time we were allowed for evaluation. Nevertheless, we managed to come to some important agreements because we had gotten into the habit of discussing our files with the federal government in a spirit of openness and transparency. We believe we are one of the first provinces to have set up valid methods of assessing the services provided by community organizations that can be applied to them across the board. We intend to provide Health Canada with a report on this subject. We feel the method we have developed will allow funded organizations to develop and apply assessment tools for each of the services they provide.
This all may sound fine, but the fact remains that much more money should have been injected into phase II of the National Strategy to fight this epidemic.
A lot could be said about that strategy as a whole, but what can you say to a Health minister who, apart from not wanting to increase the sums invested to fight a deadly epidemic has recently declared before this sub-committee that budgets were not made to be spent? How can we believe that public health is important to governments when its representatives boast of saving millions of dollars at the expense of the health of the citizens of this country?
In conclusion, we recommend that:
- All the amounts allocated to the National AIDS Strategy for 1995-96 be spent in their entirety in the sectors for which they were intended;
- The money saved in 1993-94 and 1994-95 be reinvested in specific, one-time projects for 1995-96;
- Money allocated to specific projects be decreased with a corresponding increase in core funding for community organizations. We suggest a 25% transfer;
- There be a national prevention campaign against HIV infection targeted to the gay community, the community that is the most affected by this infection;
- The necessary funds be allocated to basic and experimental research;
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- The federal government use every means at its disposal to encourage pharmaceutical companies to broaden compassionate access during the clinical trial phase for new products;
- The federal government now begin to seriously question the consequences of Bill C-91;
- The Canadian Government allow non-landed immigrants with AIDS to remain in Canada for humanitarian reasons;
- The Speaker of the House of Commons force those who have made statements showing gross prejudice towards those with HIV/AIDS and towards the gay community to publicly withdraw such statements;
- Finally, that the Canadian Government show a sense of responsibility by officially acknowledging that HIV infection and AIDS are diseases of epidemic proportions that are seriously undermining the strength, vitality, and numbers of its citizens.
In conclusion, the savings the federal government thinks it has achieved this year will increase tomorrow's expenditures tenfold. A government that deprives its citizens of health care, that refuses to fact reality, that deprives its citizens of their due by failing to launch necessary prevention campaigns is, in our opinion, an irresponsible government that shows no respect for the rights of its citizens. A government that has made so many efforts to save halibut should do at least as much to save human lives.
Thank you very much.
The Chairman: Mr. Gélinas, thank you for your presentation. I'm very happy to have heard it. It was very clear, crisp, and precise. I'm not entirely in agreement with the conclusion, but we can certainly discuss it. I'm going to give the floor to Mr. Ménard, our Vice-Chair.
Mr. Ménard (Hochelaga - Maisonneuve): We are surprised by your reservations, Mr. Chair.
First of all, I want to thank you because you are certainly among those who know the most about these issues in Quebec. This is your first appearance here. You have done other work, but this is the first time you have come before us to make recommendations. There are three matters I want to broach with you, and I will raise two of them during this first turn: the matter of assessment, and the most important program for community organizations in your area, the APAC, which you discussed at some length in your brief.
I would like you to provide us with further details and to state which recommendations you would like this Committee to adopt on the issue of evaluation. Evaluation concerns the increasing requirements various project managers have with regard to the quality of the services you provide directly to affected persons. I know that Quebec is in advance in that area, that you have prepared an analytical grid, and that you have - even more importantly - found a fairly consensual way of allocating existing resources on the basis of a model that resembles partnership.
What can you tell us about that and what do you want the Committee to recommend in that regard?
Ms Lyse Pinault (Director General, Coalition des organismes communautaires québécois de lutte contre le sida): I will answer that question.
In Quebec, evaluation requirements come from the two levels of government. There is a provision in Quebec's law on health and social services that makes evaluation mandatory, and the federal government is also concerned with assessing services.
Community organizations have no objection having their services assessed. Quite the contrary, evaluation may help us to fine-tune some of our activities and may also make certain savings possible.
However, community organizations are small organizations with limited means and they do not have the resources needed to carry out evaluations as elaborate as those governments or large corporations can afford.
In Quebec, we are preparing a project with Quebec and Montreal federal government officials. We would like to perfect a model and implement it in five different types of community organizations such as the ones represented by COCQ-SIDA, which groups organizations from large centres like Montreal and Quebec and from smaller outlying regions where various services are provided, all of these organizations being funded by Health Canada. In the course of that exercise, which would go on for a certain period of time, we would develop tools that could be used by all community organizations in Quebec. These tools would be developed in co-operation with the organizations. They could easily be integrated into their operations and would be a reflection of those groups.
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Evaluation can be very elaborate and difficult to manage in an organization. We would like to try our hand. Quebec community groups as a whole - and I include all of our health partners in that - want to assess programs and devise mechanisms and work methods that can be used by small organizations where there maybe two, three or five employees, but 150 volunteers. The evaluation methods used by large corporations cannot be transfered and directly applied to these small organizations.
We also have to find means and mechanisms that fit our work methods and our culture, which is completely different from a corporate or government culture. That is what we are working on at this time.
In the next two or three weeks we should be tabling a project with the federal minister. We want a partnership with a university that could monitor or advise us in that regard. The University of Quebec in Montreal has developped a whole community intervention sector and is already familiar with our culture and our operations. It will thus be in a better position to support us as we develop those tools.
Those tools will be tranferable when Quebec community organizations have, as a whole, been trained in the application of the assessment methods and those tools and mechanisms may be adapted for our Canadian partners.
Mr. Ménard: Allow me to address an issue that is central to your concerns, I believe, and that is, of course, the funding of the community organizations you represent through a channel you resort to a great deal, the ACAP programs.
It might be useful if you could remind the Committee of the difference between the AIDS communication action core funding and the ACAP project funding and give us some concrete examples. Then perhaps you could tell us how you would like to see upcoming funding tailored to your needs. You would like to see funding increased in ACAP core funding support, and you would also like to be able to transfer funds from one program to the other. Could you remind us of how these programs operate and tell us why you made this recommendation?
Mr. Roger Malenfant (Vice-President, Coalition des organismes communautaires québécois de lutte contre le sida): ACAP core funding provides a certain amount of renewable funds to allow organizations to set up on a permanent basis. ACAP funding provides funds to very targeted, specific projects, that are aimed at furthering prevention, improving quality of life, or something along those lines.
It would be good to provide recurrent, core APAC funding to a greater hnumber of organizations in order to give them greater stability.
How can you maintian an activity in a given region when you only receive APAC funding for a specific project, when the need goes beyond that particular project? If you're given funding for prevention only, how can you work on prevention when you must provide support?
Mr. Ménard: Could you name one of your organizations as an example? You refer to core impact funding and one-time project funding. Would ACTION SERO-ZERO, for instance, receive funding for a project?
Mr. Malenfant: I can use my organization as an example. I receive $55,000 a year in core impact funding from the federal government for a five-year period, for the strategy we are currently implementing.
That APAC grant is used to fund both prevention activities and administrative activities, such as maintaining an office, bringing volunteers on having a drop-in centre, etc.
I must seek funding elsewhere for the rest of your organization's needs. I can submit an application for project funding for a specific project, but that money must be used to fund that project in that narrow and specific way. I cannot use it for other needs that might arise. Funds are usually extended for twelve-month periods at the most. It might be possible to do more and go further with an APAC project, but a 12-month limit has been set. APAC project funding is for an 8-to 12-month period.
Mr. Ménard: So, you really would like the committee to make a very clear recommendation that substantial operating funds be made available to organzations?
Mr. Malenfant: It's really quite simple. APAC core funding allows us to give ourselves the tools and APAC project funding allows us to work with the community. It's useless to have a tool box that is chock full of tools, if you don't have the funds you need to maintain a certain stability. Currently, in the regions, there are places where few resources are allocated to prevention or to the support of individuals.
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Mr. Ménard: Am I mistaken when I say that there is a certain tendancy that one can discern and verify in the field, that an increasing number of institutional partners, groups of CLSC, regional boards, etc, are attempting to appropriate the mechanisms that were initially conceived for community groups?
Just to take a random example, look at Hochelaga-Maisonneuve where our CLSC, together with other institutional partners, has requested core ACAP funding and ACAP funding project funding. I am not saying that what they do is not worthwhile. I'm simply noting, for the sake of analysis, that community groups are going to find themselves increasingly competing with institutional partners that have ever-growing resources. Is this correct and should our committee not be more vigilent with regard to that phenomenon?
Mr. Gélinas: Should we be on guard? Everyone knows that health and social services at both the federal and provincial levels are having to streamline their activities. If public organizations can secure $15,000 , $20,000 or $30,000 from another budget enveloppe, they're going to try to do so.
We would, however, like to see changes to ACAP project funding criteria. We are going to work with our partners on this, to limit, eventually, the access public organizations have to that funding.
Mr. Ménard: If I'm not mistaken, Mr. Chairman, the officials responsible for administering the ACAP program will be appearing before the committee tomorrow.
The Chairman: Yes.
Mr. Ménard: This kind of information is highly interesting. I have no further questions.
[English]
The Chairman: Merci.
Ms Bridgman.
Ms Bridgman (Surrey North): Thank you, Mr. Chairman.
First of all, I must apologize. Getting a working knowledge of French is an objective I have for this year, but unfortunately my progress isn't as good as I would like it to be. Therefore, I'll have to ask my questions in English.
I think I would like a little clarity on the previous questions in relation to the funding. When we use the term ``core funding'', are we talking about the same thing as ``project funding''? Is that type of thing what we're talking about there?
The organization is composed of all the community groups in Quebec that are directing their services towards AIDS. I would like to know if you have a counterpart across Canada. Are there other provinces that are doing the same kind of thing from a coordination point of view?
Also, is your mandate more of a communication kind of a mandate, or do you actually have a decision-making mandate so you can actually suggest programs, prevent duplication, get some sort of an action plan, or that kind of thing?
One of the concerns that has come up in the committee before through various methods has been an implication that maybe there is a great need for coordinating some of the existing things we already have out there. I'm getting the feeling that what you people have done here may be a step in that direction.
I would like a little expansion on that and how you see that as a positive in the approach to coping with AIDS in Quebec, and possibly why Montreal has become one of the easier places to live with AIDS. Could you maybe expand on that, please?
[Translation]
Ms Pinault: On the matter of core ACAP funding and ACAP project funding, from the perspective of the federal minister they are seen as a whole, i.e. the ACAP enveloppe and the AIDS community action program. But in each province, it is divided up into two compartments: core funding and the project funding, which may be renewed. In Quebec, we have asked our groups to provide evidence that their operations are sound, on a yearly basis, if their ACAP is to be maintained. That funding is not given out freely, nor easily. The other component, the ACAP funding is targeted at very specific projects.
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COCQ-SIDA's mandate to bring organizations together allows us to coordinate our groups' efforts, and our federal grant is used for advocacy, health promotion, and the coordination of Quebec AIDS community organizations. In keeping with that mandate, we try to support groups in their daily activities, and we also try to support their development, a development that takes the context into account.
In that way, the governments can deal with a single spokesperson on the issue of development in regions where there is nothing, or no one. When an organization is created, our job is to provide it with administrative and political support, methods, and to put it in contact with its partners in other regions who have one or two years' experience. We simply have to transpose the operating models. That is, in brief, COCQ-SIDA's role, and our members ask us to speak for them. There is a similar group in another province, here in Ottawa, the Ontario Aids Network. But the Ontario AIDS network operates on a completely different basis: it is more of clearing house where various Ontario partners may discuss things. That organization does not have a political and advocacy mandate to do advocacy for persons with HIV, or at least, not as clearcut a mandate as we have.
Our mandate allows us to do certain things such as cooperating with the governmeent in the allocation of subsidies. We decided at one point to set aside our hesitation and get involved in a hands-on way, to take part in government decisions with regard to our Quebec partners on the allocation of funding and on the criteria used to do that, and to articulate issues that arise all over Quebec, at all levels. Thus, though we have only two employees, we speak out on behalf of AIDS groups everywhere.
Mr. Gélinas: It seems easier to live with HIV in Montreal than elsewhere in Quebec. Since Montreal is a large city, there is less ostracization and easier access to HIV/AIDS specialized services. The coalition tries very hard to see to it that all persons living with AIDS in Quebec have access to those services. I live in a small town in Bois-Francs, in an outlying region, and I know that there are people living with HIV or AIDS throughout Quebec. This means that a whole range of health and social factors are involved. We know that the homosexual comunity continues to be the most affected, since 70 to 75% of those living with AIDS belong to that group. Going back to where you came from after 10 or 15 years isn't always easy!
[English]
Ms Bridgman: In relation to Montreal, I was thinking more of whether Canadians who have AIDS are coming from elsewhere in Canada to Montreal because it is easier to live with AIDS there. I'm thinking about discrimination; are these kinds of things addressed?
You mentioned previously an awareness program and I'm wondering -
Ms Pinault: The truth is that the doctors are in one of the three cities where it's developed the highest. We have good doctors who have good services.
Ms Bridgman: Thank you very much.
[Translation]
Mr. Gélinas: We also know that other Canadians move to Montreal and settle there. I did not take part in it myself, but there was national meeting in the Prairie region, where homosexual men really suffer from discrimination. We know that many men with AIDS leave that region to settle in Montreal. Even though they then find themselves far from those who are close to them, they prefer that isolation to the homophobia and ostracism they experienced back home.
Mr. Malenfant: Physicians in the Eastern Townships in Quebec were polled recently. They were asked whether they accept as patients, and treat, persons who are HIV positive or children with AIDS. Sixty percent of the dentists and physicians in that region stated that they would not accept patients with HIV, because they did not want to be put on anyone's list and did not want to treat and follow up on those patients. Dentists felt the same way.
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In outlying regions, not only must the population's awareness be raised, but the same work must be done with all the health professionals and caregivers who work in hospitals, private clinics, or CLSCs. Some these CLSCs who have not had to deal with a single case have a great deal of trouble getting used to the idea. Their attitude is always a resounding ``no'' at the outset.
Aside from suffering from this disease, an HIV-positive person or a person who has reached the AIDS stage is forced to fight to raise the awareness of the those who are going to provide him with care. So it is very difficult in the regions and, when no organizations has been set up, it is even worse.
Barely a year ago, we had no accommodation for such people in my area. We were forced to send people to Montreal, Quebec City, and even Toronto. On two occasions, hospitals rejected people whose families were no longer able to care for them. We were forced to separate those people from their families and to send them to other regions in order to allow them to live with dignity.
[English]
The Chairman: Mrs. Ur.
Mrs. Ur (Lambton - Middlesex): I have a few quick questions. Your organization represents 31 organizations. Is there an administration cost for these 31 organizations? I would think with 31 organizations there must be some kind of duplication. I am wondering if there are administration costs and if those are taking away from the genuine efforts to assist with any cure or preventive ways within HIV/AIDS persons.
Another question I have is on which programs or activities would your services spend the funds received under the national AIDS strategy and how would you allocate the extra moneys you have requested.
In your recommendations you had the government should do this, the government should do that, the government should do this. Is there any partnership in any of your recommendations, or is this all one person's avenues to address? I wondered whether there are other factors to include there.
[Translation]
Mr. Gélinas: I would like to provide an answer first to your question on duplication as concerns the provincial coalition and the other organizations. No, there is no duplication.
We represent 31 organizations. The coalition is not a service organization. Thus, we deliver no services to persons with AIDS or HIV. As Mrs.Pinault mentioned, we are an advocacy organization that makes representations to government.
We have an overall annual budget of $120,000 to $125,000, taking everything into account. The coalition has a two-member paid staff and all other hours are contributed by volunteers, as our brief says. People take leave without pay to come and work with us.
Today, I took the day off to come here to make this presentation, because I don't work for the organization. I am the Chairperson of the Board of Directors.
The volunteers who devote their time to this problem are living proof of the positive aspects involved here, and of the commitment of Canadian men and women to helping out on the HIV/AIDS battlefront. If you consider our $5 million net return objective on the small $600,000 investment, $10 an hour is not a very high hourly rate. It is a testimonial to the work that is done by the community for the community.
Ms Pinault: Your question was quite long and I may have forgotten some parts of it.
When we talk about investing additional money, we don't mean that additional funds should be injected into COCQ-SIDA, but that further funds should be made available to the organizations who work in the regions, through ACAP core funding.
We don't want to see ACAP project funding disappear. We don't want Health Canada to eliminate the project funding enveloppe, but we would like to see additional funds granted to ACAP core funding.
On the last page of our brief, you have a list of all the community organizations, with the subsidy they receive from the federal government.
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You will see there are some organizations that receive nothing and others with $10,000 or $20,000 a year. There should be subsidies to support those organizations with nothing, or those who receive $10,000 or $20,000 a year, so they can continue to survive and provide services in the regions.
In Abitibi-Témiscamingue in Quebec, there is an organization that is not funded by Health Canada but does receive $13,000 on a yearly basis from the Quebec government, and has done so for the past three years. It does fundraising, of course, and has kept the door open to those funds. There are volunteers, but they cannot do all the public outreach work that needs to be done in prevention, education, support, and assistance for people with HIV in that region so that those people are not forced to move to Montreal.
Often, the presence of community organization leads to the gradual development of networks to receive those people. When you have a $13,000 annual subsidy, that means one employee for six months of the year. Six months later, he is on unemployment or you find people from the underground economy, who will not declare their earnings. With $13,000, you can pay for a phone and a room that serves as an office. The organization survives on sheer will and determination, but it can't provide quality services.
We were talking about evaluation earlier. What do you want us to go and evaluate?
[English]
Mrs. Ur: But that's just what I'm saying. With 31 agencies, I would think there must be some areas that are pretty close to the same effects they're trying to generate, and to save costs so you're putting dollars into HIV/AIDS funding rather than administration, I would think there's room for improvement in that. If there weren't so many agencies, you could be more cost-effective.
[Translation]
Ms Pinault: None of those groups does the same work. There's never more than one organization per region. There is one group in Quebec city, one in the Gaspé region, one in the Saguenay-Lac-Saint-Jean region and one in the Eastern Townships. You never have two organizations working in the same area. Those organizations cover enormous territories.
In the city of Montreal, there are several homes for those with the disease, but they only provide beds. One bed more or less, in the same home or in different ones does not necessarily mean additional costs. In any case, we don't necessarily serve the same clientele. The service organizations have a different mission. All these organizations function separately; they all have different missions.
Our organization works a lot with community groups to avoid duplication of services in any given city, to avoid duplication of administrative costs, co-ordination of volunteers, etc.
Some organizations are concerned with the people who are close to the persons affected, some with women, others with children. They are specialized. You never have three groups dealing with women, or children, or three drop-in centres. There is one drop-in centre, one group kitchen, one food bank, one organization that deals with families. All of this is highly structured in order to keep our costs down. This is something we are very much aware of.
Mr. Gélinas: I should also add that AIDS community groups work in cooperation with other community groups and share infrastructure costs. The coalition shares accommodations with other community groups that aren't necessarily involved with HIV-AIDS. There are savings at the infrastructure level. We also work in a partnership mode with the Quebec wing of the Canadian Hemophilia Society, one of our associate members, in fact.
All the Quebec community groups and public and parapublic organizations make enormous efforts to work in partnership with others
[English]
The Chairman: Mrs. Terrana.
[Translation]
Mrs. Terrana (Vancouver East): Good day. I'm not a member of this committee. I am here as an individual member and I am from Vancouver.
I am of course very interested in what you have told us, even if I'm not very active in that area because I'm must take part in other activities.
What I don't see here is a budget. Could you provide us with your budget, so that we might see where these funds come from, where they're spent, etc?
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Your Appendix II is a list of expenditures or funds you receive from the government in the context of the project support program; these are very small figures. I think you must have other funds coming in. Do you have fundraising drives? Do you have partners in Vancouver? You say that you offer your services everywhere. Is there something similar in Vancouver?
Ms Pinault: There is no similar service in Vancouver, but we do work with Canadian partners on some Canadian issues. We referred to our work in defending or representing our organizations; in Quebec, we do that alone. However, we have specific partners for other matters, such as the pharmaceutical products companies, the treatment issue, medication, and certain federal matters; we act in these areas with specific partners such as groups in Vancouver. In those cases, it is easier to work with them, and we work in closer co-operation.
Mrs. Terrana: That is my riding.
Ms Pinault: Yes. We also work with colleagues from the Maritimes in certain areas, when they are matters of common interest and when that seems useful.
For instance, we work with the Canadian Haemophilia Society on certain matters of common interest to AIDS community groups and to society in general.
Mrs. Terrana: I would like to raise something else in connection with medication. There is an enormous problem in prisons at this time, as you know. Are you doing any work in prisons? Are your partners doing any? Are there any programs for those persons?
Mr. Malenfant: There are community organizations that work with penitentiaries. In my region, there is a provincial prison and a federal one. We work with both.
We are also active in schools, both primary and secondary schools. Many schools, universities and CEGEPs ask us to come and meet the children and teenagers. Community organizations have deep roots in our communities. We talk about our personal experiences, but we also provide training.
For instance, in Quebec, we have developed a certain expertise in the area of AIDS in the workplace. We help businesses develop management policy with regard to this reality in the workplace, management policy for their staff, teach them how to act when they work next to an affected person.
Our organizations consider education in this area to be very important.
Mrs. Terrana: I would like some information. On your list there is no information on homes or shelters for affected persons. Do you not receive any funds for those homes? How do you pay for them?
Ms Pinault: The homes are not subsidized by Health Canada. We included them in the list to show you that we have some. They are not funded under ACAP.
Mrs. Terrana: Where do these subsidies come from for them, then?
Ms Pinault: They cannot receive federal subsidies.
Mrs. Terrana: Oh!
Mr. Gélinas: They are partly subsidized by the provinces.
Mrs. Terrana: How much do you receive for those homes?
Ms Pinault: Forty-five dollars per bed, per day, in most cases.
Mrs. Terrana: Another figure that bothered me was the percentage of physicians who refuse to treat these clients, according to what you said.
Mr. Malenfant: That was in my region.
Mrs. Terrana: In your region. Is that the case in other regions, in the Prairie region, for instance?
Mr. Gélinas: Certainly. The results of the latest polls of physicians are absolutely astounding. I remember reading one study where it was said 40% of doctors still refuse to send their children to a school where there is a child with AIDS. It's appalling. When you read that sort of thing, it brings you down hard. And yet, that is the reality. It shows that doctors are no more immune from prejudice and misunderstanding than other sectors of the population.
Mrs. Terrana: And yet, you obtain the co-operation of physicians in your work.
Mr. Gélinas: Yes. There are doctors who work with passionate commitment in this field.
Mrs. Terrana: Even as volunteers.
Mr. Gélinas: Yes.
Mrs. Terrana: Thank you. Thank you, Mr. Chairman.
Mr. Ménard: Mr. Chairman, I appreciated the questions put by our colleague a great deal and I thank her for joining us today. This is interesting because I believe that most of you were already there when the epidemic started. You are veterans. I know that is certainly the case for Lise. I know at least two of the other witnesses, but you did confirm that you have been there from the beginning.
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There is certainly something worrisome about the fact that we are all meeting here again, more than ten years after the outbreak of the epidemic. You seemed to say that the epidemic is not losing ground, at least not in the gay male population, quite the opposite! Certain specific groups you identified even engaged in high-risk behaviours. As long-time activists, on the scene from the very beginning, how do you explain the fact that, in spite of the resources invested in this area, AIDS has not been brought under control, even as we are about to prepare phase III of the National Strategy?
Mr. Gélinas: I think there has been very significant progress. This is obvious if you compare the first study and the most recent study carried out in Quebec on the sexual behaviour of men who have sexual contacts with other men. It showed that 75% of those men have adopted safe behaviours. One may of course say that there are still 25% left, but...
Mr. Ménard: That is in the 25-to-45-age group - our age group, in fact.
Mr. Malenfant: Those who have been there from the beginning...
Mr. Gélinas: Young people, as young people are wont to do, take risks in this area as they do in others. One may well wonder, for instance, how it is possible that in 1995 there is still such an such a percentage of teenagers who become pregnant and do not use contraception. That is a reality we must never forget. Youngster like to take risks, they have a taste for it and they forget about the consequences. For those reasons, I think we have to make major investments in that age group.
Ms Pinault: I'd like to add that, over the past two years, our funds have gone to education for the most part. We talk about condoms and safe sexual practices. We have not worked on self-esteem, especially with the gay community, which has been the most affected and with whom we have worked for the longest period of time. We have not worked with that segment of the population on getting people to accept their homosexual lifestyle. Our work is superficial in that way.
We are told that there are health promotion branches within Health Canada. We do not in fact do health promotion, but prevention work, always. Prevention should in fact be a second phase. You might compare it to planting seeds, in the hope that common sense will grow. We need to prepare the ground beforehand, but we never do that. We always accept programs to distribute condoms, to show through pictures how condoms should be worn, how to clean a needle, how people should avoid sharing needles, etc. We never try to show that it is all right to be a homosexual, that one can live with that orientation, that it is not the end of the world, that one has the right to love, the right to exist. We don't do that, and yet we ask that group to be quiet and well-behaved and to experience their sexuality in a positive way.
I, for intance, smoke like a chimney. I work, many, many hours every week. I live like a crazy person. I run from one city to the next; I'm always under stress. I don't have time to exercise to keep in shape. Suddenly, I'm told that I must stop smoking or I could get lung cancer. Of course I should, but, by the same token, can we ask those who risk losing their jobs, who live hand-to-mouth and from paycheque to paycheque to be calm, to keep in shape, to quit smoking and lead a healthy life, when we don't give them the means to do that?
It is the same thing when you talk about prevention and sexuality. If we don't act to raise awareness in the public at large and tell those people that a certain percentage of their members make up a group within it and that they must be accepted, that they are people just like everyone else... Those people, just like everybody else, would eventually get over their discomfort and would not have to spend their lives in the closet. If we could reach that point, perhaps then safe sexual practices would be more generally accepted.
No study has ever been done on the impact of death and mourning on the gay community. We are told that those in the 25-to-45-age group do not all protect themselves. But what are those men going through after losing their lovers, friends, brothers, sisters, year after year? How do they feel when they look at family photographs and have to mentally strike out all of those who have not survived over this ten-year period, leaving one or two? What impact does that have on their will to live? I think you need a will to live if you are to lead a sound, healthy life.
Mr. Ménard: And you must feel like protecting yourself.
What do you have to say about the pharmaceutical companies?
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You know that, as a Committee, we will have to look at that question. We may even set up a round table where affected persons, government representatives and pharmaceutical company representatives will be able to meet.
In your recommendations 6 and 7, you invite the federal government to question the consequences of Bill C-91 and you want increased access to clinical trials. Could you elaborate on those two recommendations?
Mr. Gélinas: I would just like to say one thing, tongue-in-cheek: Have the pharmaceutical companies gotten poorer since the HIV/AIDS virus appeared in Quebec or in Canada?
Ms Pinault: With regard to Bill C-91, those who were in government in that time and the community organizations were all subjected to lobbying by the pharmaceutical companies. I used to get phone calls three times a week: ``Help us, Bill C-91 has to get through''.
In most European countries, new products are protected for a period of 24, 26 or 27 years. Our 23-year period was no match for that.
All that lobbying also went on because politicians believed that government, i.e. the people, would benefit from job creation in research. That is what we were promised during that lobbying effort.
I remember that the former Quebec Minister of Industry and Commerce sent extravagantly positive letters to the federal minister on Bill C-93: ``We must have it because it is going to do this, it is going to do that...'' I am happy to see that he is at least consistent. He questioned Parliament on the fact that BioChem was going to produce 3TC in Great Britain.
I think that the government has the means to ask questions. I was here when those people testified before the Committee. They told us what proportion of revenue they invested in research, but they did not go into much detail about that amount. I suspect that marketing was included in that envelope.
On the topic of compassionate access, it is very important for persons with HIV to have fairly rapid access to medications that prolong their lives. We still can't cure the disease; we can only sustain a certain quality of life for an extended period.
I think the government has sufficient leverage to say to those companies: ``When you approve phases II and III, compassionate access must be a part of that. We want to see it on paper.'' I think the government has the power to do that.
Mr. Ménard: To ensure the full understanding of the members of the Committee, could you remind us what is meant by compassionate access?
Ms Pinault: Compassionate access comes into play when a medication reaches phase II or III in clinical trials. Some people are not chosen for the clinical trials, simply by chance or because they did not meet all the criteria, but they may have free access to the medication, under medical supervision, just like those who do take part in the clinical trial.
This makes for more stringent clinical trials, because when there is no compassionate access, people accept just about any conditions in order to be a part of the process. They don't follow the process properly, or they pass on some of the medication to someone else, which means that the results in phase II and III trials are not as good as they could be.
[English]
Ms Bridgman: I'm thinking specifically now in relation to the national AIDS strategy and requesting from your experience some comments or recommendations on how this strategy can work better. I've heard a couple of things, such as the core funding and the 25%, a core-versus-project kind of thing. Also, compassionate access to the drug trials is something we could look at on that line. In my interpretation anyway, the suggestion of programs such as condom and needle exchanges may be treating the symptom versus actually diagnosing and treating the problem.
What other kinds of things in relation to this program would be an asset? It's a national program and it's the main core of addressing AIDS nationally. What sort of advice or suggestions do you have to improve it?
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[Translation]
Mr. Gélinas: We recommend a national compaign targeted at the most affected population. Earlier, we mentioned the problems experienced by men who have relations with other men. Prevention efforts have focused on what I would call the closed environments frequented by some homosexuals: the bars and saunas of the city of Montreal. I think that the time has come to develop a national campaign aimed at all men. You hear a lot about bisexuality among young people. Those young people are dispersed throughout Quebec. They don't necessarily all go to bars. We hear about the gay village in Montreal, but only about 10 or 15% of gays frequent that village, which leaves 80% who don't, and who live in Montreal, Victoriaville, Edmonton Halifax. We live everywhere. In fact, we had suggested to Ms. Marleau that the government study the possibility of a national campaign targeting that community. That is one element.
[English]
Mr. Culbert (Carleton - Charlotte): I just want to touch on a couple of issues from your earlier comments about education, discrimination, levels of income, and areas where these victims of HIV/AIDS fit into society in Montreal and other regions of Quebec, for that matter. Is there a particular area where you see more examples of the victims?
I'm looking at things we might recommend, other than dollars and cents, as a final result. We always zero in on dollars and cents, but I think it takes more than that. Education, as you just mentioned is a component, there's no question. But obviously we're not doing something right or we'd be going in the other direction instead of increasing. I liked the analogy that was made earlier between exercise and good health for a healthy heart and lungs. That's great.
What do we do on the other section for HIV/AIDS? We're not talking about a healthy heart and healthy lungs there, we're talking about something different. Do we put more emphasis on education? Is there a particular area with the poor that we should be concentrating more on?
I'd like your comments.
[Translation]
Mr. Gélinas: I think we need to invent new means or methods, but I think we can't invent everything, especially in light of the fact that Canadian society has already shown a lot of imagination and innovation in this area. The reality of HIV/AIDS has made Canadian men and women progress, and it continues to push them forward.
I think we have to continue to be inventive, but emphasis has to be put on every area. Someone mentioned work in prisons earlier. I know that absolutely nothing was being done in prisions previously, but the federal Department of Justice opened things up and allowed condoms to be distributed in penitentiaries. I read that the department was looking at what it could do with regard to needle exchanges. I think we must continue to make great efforts and we must increase funding. The funding continues to be quite slender, if we compare it to other areas.
Mr. Malenfant: Basically, we have to act. Where AIDS and the whole set of problems surrounding AIDS is concerned, money and health are not the only issues. Society as a whole is involved. As long as the stakeholders who can intervene in our society do not say that we must break the back of this epidemic we call AIDS, we will only take small steps, and we will only talk about money.
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In Quebec, we have taken the initiative of bringing together community organizations and federal and provincial representatives so that they can build local or provincial projects together. That is an exercise in partnership that is providing good dividends, not simply financially, but also in terms of time and action. We are dealing with an epidemic here. As long as everyone has not said: ``Yes, we must intervene'', the situation will resemble what we have seen in my region. We have to convince 60% of physicians that they can treat affected persons in their clinic, that they can work with them. Those people will not infect the clinic by their very presence. A businessman need not fire someone because he has AIDS. On the contrary, he should keep him in his company and thus maintain the quality of life of both this business and the individual in question.
There has a be a will to act here that comes from everyone, not just governments. The government can help us to make this common will a reality. At this time, it is only coming from the community groups level and from a few researchers, a few physicians and a few parliamentarians. But we need everyone on board, since we are dealing with an epidemic that is creating havoc and will continue to do so.
Ms Pinault: I'm going to give you a little free advice on the matter of supporting health promotion. Change the legislation. Recognize same-sex couples and include homosexuality in the hate crimes legislation. Make that kind of legislative change and you may create conditions that will be sufficiently favourable for those people to want to live a good long time, and to want to be careful.
Mr. Ménard: I invite you to follow current developments on the parliamentary scene, madamePinault.
[English]
Mr. Culbert: Are you referring to Bill C-41?
[Translation]
Ms Pinault: Yes.
[English]
Mr. Culbert: Has it been your experience over the years with HIV/AIDS that the increase in numbers, specifically let's say in the Montreal region where you indicated there was growth, has been with a certain sector of society? Does economic standing in the community have any relevance whatsoever, or are you getting a mixture throughout the whole economic standing or social part of the community? I'm just wondering if we're doing a good enough job at aiming our advertising and education at schools, universities, and what have you. Is there a sector of the community we're missing and should be zeroing in on?
[Translation]
Ms Pinault: The gay community, according to our research, is a fairly wealthy and well-educated community. So I can't say we are missing any specific sector.
Where drug addiction is concerned, however, the situation is different and there is a lot of transiency with drug addicts. That part of society is generally the worst off. Interventions in that sector must be different from those in other sectors. But we cannot target our efforts with the same kind of accuracy in all communities and clienteles.
In ethnocultural communities, there are men, women and children from every category of society, some very well-educated, others illiterate, some with high incomes, others with low incomes. We cannot...
[English]
Mr. Culbert: It's crossing all barriers, then.
[Translation]
Mr. Gélinas: We know that it took years before governments and citizens generally were willing to acknowledge, at the very least, that this disease posed a serious threat to society.
Now, we are reaping the consequences of that lack of awareness. As I mentioned in our presentation, we now have to pay the piper. Tomorrow, we will have to spend ten times what we think we are saving today. We will not be able to continue to raise the population's awareness of this reality by decreasing our efforts now.
The Chairman: Thank you very much. Before bringing the meeting to a close, I want to thank all of our witnesses this afternoon for the excellence of their presentation and the serious approach of their organization.
I have one or two brief comments. I'm very happy to see that your organization does evaluate the services it provides, and does a sort of self-assessment.
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I think that will really help to eradicate the problem as such.
But I am still concerned to hear that there is a decrease in the acceptance and practice of safe sexual behaviors by young people. I think we're going to have to do something about that problem.
You talked about core APAC funding and APAC project funding and you suggested a 25% decrease in project funding with a corresponding increase in core funding. How are the funds distributed at this time? Does 50% go to project funding? What is the proportion?
Mr. Gélinas: I don't know. On the matter of evaluation, I can say that evaluation of our services by community groups is nothing new. They are convened to a general meeting every year. Our members tell us whether we should stop or continue, and whether we should go in this or that direction. In this way, the services we provide and the quality of the services given to our target populations are submitted to our members' vote on a yearly basis.
The Chairman: Congratulations. I think there is progress in the fact that you will be giving an evaluation to Health Canada.
Ms Pinault: On condition that Health Canada helps us with our funding also.
The Chairman: There are people around this table who want to help you. Thank you very much.
Mr. Gélinas: I want to thank Mr. Ménard for saying that he considers us veterans. That is touching, but I want to add that the reality for veterans like us is that we must bear the burden of the loss of many men we have known and who have disappeared from our lives, young people, much younger than we are now. All of this has a life-or-death urgency for us.
The Chairman: Thank you very much.
The meeting stands adjourned.