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Documents: Stategic Plan 1999-2002

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ENVIRONMENTAL ANALYSIS

The information contained in this section represents highlights from the Environmental Report. Please refer to the Environmental Report for a complete description of each determinant and related empirical data.

The World Health Organization estimated that the number of adults and children living with HIV worldwide was 33.4 million at the end of 1998. In North America, 890,000 adults and children, or 2.6% of the global total, were living with HIV/AIDS as of December 31,1998.

It was estimated that there were 6 million new infections and 2.5 million AIDS deaths in 1998 worldwide. More than 95% of the new infections were estimated to have occurred in developing countries. These countries have experienced 95% of all deaths to date from AIDS, largely among young adults who would normally be in their peak productive and reproductive years. Since the start of the epidemic nearly 20 years ago, HIV has infected more than 47 million people and caused the death of nearly 14 million adults and children.

Estimates of new AIDS diagnoses in Canada and British Columbia look like this:

The British Columbia Centre for Disease Control (BCCDC) estimated that as of the end of 1998 the number of people ever infected with HIV in British Columbia, including those who have died, was between 9,500 and 10,000.

The British Columbia Centre for Excellence in HIV/AIDS reports that while the number of AIDS cases has declined dramatically due to availability of effective antiretroviral therapy, the number of people with symptomatic HIV will continue to increase and place significant demands on health care and social service systems. It is therefore appropriate to use the number and rate of people testing newly positive for HIV as a means of tracking the epidemic.

Some of the recent trends in HIV infection reported by the BCCDC include:

Towards the end of 1997, there was a rapid drop in the number of injection drug users (IDUs) testing newly positive for HIV. It seems likely that this number may actually fall below the number of men who have sex with men (MSM) testing newly positive over the course of 1998. This decline is felt to be consistent with epidemic saturation, rather than a triumph of preventive programs.

Aboriginal people continue to make up a significant proportion of people testing newly positive for HIV. There has been no major change within this trend, though it must be emphasized that aboriginal women carry a greater burden than aboriginal men with respect to issues of HIV/AIDS.

There was a slight decline in 1998 in the number of women testing positive for the first time. This is probably simply a reflection of the decline in overall numbers of injection drug users (one-third of whom are women) who are testing newly positive.

Also noted is a substantial drop in the number of infants born to HIV-positive women who are themselves infected, as a result of antiretroviral treatment during pregnancy, labour and post-partem.

Data on transgendered persons are best obtained through specific research projects in the transgendered communities. BCCDC information from laboratory-based HIV surveillance tends to miss transgendered persons as an identifiable group because gender is identified by physicians rather than by patients themselves.

A significant number of sex trade workers have continued to test positive, most of them also injection drug users. Another important phenomenon observed during 1998 is that of eight heterosexual men testing newly positive who are believed to have contracted the virus through contact with sex trade workers. It is BCCDC’s hypothesis that the epidemic of infectious syphilis among sex trade workers in the Downtown Eastside may be facilitating heterosexual transmission of HIV.

No age group is seeing a clear increase in the rate of testing and this includes those between the ages of 15 to 19. However, there must always be a question as to how well voluntary testing samples individuals in this age group.

BCCDC forecasts the following future trends in HIV infection:

1. The rate of new infection among injection drug users will probably not be as high as it was in 1996 and early 1997, however, it will likely settle at an incidence of approximately 5% as measured by the VIDUS project.
2. Although substantial declines in the number of gay men testing newly positive for HIV over the past decade have been noted, this trend is currently leveling. BCCDC suggests we are reaching a steady state whereby an incidence of approximately 2 % per annum might be observed among young gay men as measured through the Vanguard cohort.
3. Improvements in HIV testing and antiretroviral therapy for pregnant women have reduced the rates of vertical transmission.
4. The rates of HIV infection will almost certainly continue to increase in BC’s prison population. Although accurate figures are difficult to obtain, the BC Persons With AIDS Society points out that there is strong circumstantial evidence that both prevalence and incidence of HIV infection among incarcerated individuals are dramatically higher than among the general population.

In the absence of a cure or effective vaccine for HIV infection, preventing the spread of HIV through public health mechanisms is the primary option for controlling the epidemic. HIV exploits human behaviour to spread from infected people to vulnerable populations. Governments can achieve the greatest impact on the spread of HIV by creating individual and group incentives to adopt safer behaviours. The effectiveness of these initiatives depends on harm reduction by those most likely to spread or to be exposed to HIV.

Harm reduction is a philosophy and a practice that minimizes harm and increases the health and quality of life of the individual. It recognizes that each individual is the expert on his or her life. Harm reduction respects the individual’s decisions regarding their personal health and endeavours to minimize any harm resulting from those decisions to the individual, their family and/or, caregivers and the larger community.

For injection drug users, harm reduction can mean use of less harmful drugs, safer drug use or practices, reduced amount of drug use or cessation of use. In Britain and Europe, where comprehensive harm reduction strategies have been implemented for some years, there is less needle sharing, less drug use, fewer deaths from drug overdose, decreased crime rates and less HIV transmission.

Harm reduction can also be applied at the broad societal level to bring about change in public policies and laws. For example, the federal Controlled Drugs and Substances Act (section 56) allows the Minister of Health to exempt any person or class of persons from the Act and to make regulations to that effect (section 55). These provisions can be used by the Crown to protect facilities or caregivers from criminal charges in connection with drug-related activities by their clients or patients.

In Vancouver, HIV prevalence among injection drug users is highly concentrated among those who have the least advantage in society. While injection drug use and HIV are found in most neighborhoods in Vancouver, the Downtown Eastside, which is the poorest urban neighborhood in Canada, has the highest incidence of HIV among injection drug users in North America. It is not injection drug use itself that is causing these alarming rates, but the circumstances in which these drugs are used.

The Canada Health Act provides for universal access to health care. Persons living with HIV, like others confronted with serious chronic illnesses are entitled to care, treatment and support. It is entirely appropriate to extend the principles of the Act to preventable diseases and illnesses and to invest equal attention and financial support in preventing the spread of HIV infection to vulnerable populations.

Research based evidence shows that people will respond to primary prevention programs and modify their behaviours. The stages to achieving safer behaviours begins with information and awareness about HIV and the available methods to prevent spreading HIV. Individuals and groups provided with information about prevalence and incidence of HIV are better able to assess their risks. In addition to general information about HIV, the availability of confidential HIV testing can provide information to people, communities and public health authorities that encourages and justifies preventive actions by individuals and groups.

While knowledge will induce some to adopt safer behaviour, in many cases there is an immediate burden to these changes with uncertain future benefits. Consequently, additional steps to achieve effective prevention include measures to reduce these burdens for both the infected and vulnerable populations and in some cases to create immediate incentives (or benefits) to adopt safer behaviour.

Measures to improve the availability and distribution of condoms and clean needles have been adopted to permit safer behaviours at an accessible cost. Additional measures such as making medically controlled doses of pure drugs available to addicts not in "detox" programs are being considered. Lowering the barriers and reducing costs for practicing safer sex or injecting behaviours will also improve the effectiveness of prevention programs.

The development of community resources is complementary to changing risk behaviours and supporting individuals to promote health. HIV/AIDS service organizations complement other community agencies by providing community space for social interactions in addition to information, education, condoms, sterilized needles and other resources to meet the specific needs of populations at risk. In addition to society's recognition of the need for broad supports to arrest the spread of HIV, we need to focus on those at risk and to address the broader social and economic reasons why some people are at greater risk.

The effectiveness of prevention through behaviourial change has not been directly demonstrated because of ethical and financial limitations on research. Consequently, investigators have applied mathematical models informed by research findings and calibrated by previously reported diagnosed AIDS case and HIV surveillance data to explore the options for prevention interventions.

One of the more significant findings in this work is that infections averted today have a cumulative effect in the future by disrupting the chain of viral transmission. Unlike medical treatments, the benefits of expenditures on prevention are not limited to the person directly involved in the program. The cost of averting an infection declines with time as this cumulative effect builds from the initial expenditure.

Prevention should be viewed as an investment that generates benefits in the future and spreads these benefits to those who might have been at risk. This is in marked contrast to an expenditure on treatment for an immediate health effect for a particular person.

In the light of limited government resources and the cumulative future benefits of prevention, governments need to ensure that effective prevention programs are not under-funded today. Effective programs must address the broad needs of those people who are most likely to contract or transmit the virus. Prevention programs among those most at risk can be controversial; nonetheless, primary prevention can preserve health, save lives and reduce the avoidable human and financial burden of HIV disease in the future.

A very large percentage of persons living with HIV disease became infected when they were relatively young, before they had developed an extensive attachment to the workforce. Health Canada has determined that the average age for HIV infection in Canada is now about 23 years. Others, while older, have either been unable to continue working for health reasons, or were never really attached to the workforce in the first place.

Many persons living with HIV/AIDS in the Vancouver area today must rely on some form of income assistance such as BC Benefits/BC Disability Benefits, Employment Insurance (EI medical), Canada Pension Plan (disability) and for some people, private long term disability plans. The income from these sources is extremely limited and does not provide adequate income for proper housing, food, nutritional supplements, vitamins, over the counter medications, bottled water or transportation costs (to and from medical appointments, for example).

In the Community Health Research Project (CHRP) which is investigating the economic costs and related social issues of HIV and AIDS in Vancouver, 15% of participants received help with transportation from an agency, group, organization or individual at least once in the two weeks prior to being interviewed and 17% received help with clothing and household goods.

For many individuals living with HIV/AIDS, family and friends are not consistently available. Some have been estranged from family through long histories of individual and systemic abuse, while others have experienced rejection because of HIV status, sexual orientation, substance use,

or a combination of factors. Others have lost partners and friends to HIV and find themselves leading relatively isolated lives.

In response to this situation, Vancouver has developed a range of programs and services designed to build social support networks among those affected by HIV/AIDS. These efforts have often been developed by specific groups identified as being at increased risk, or by agencies that have recognized an emerging need.

More needs to be done to expand and strengthen social networks. For example, there is an urgent need for social spaces for gay men outside of the bar scene. Seropositive individuals living outside Vancouver’s West End and Downtown Eastside areas often find themselves having to leave their own neighbourhoods as they seek to develop social networks. Many individuals living in outlying municipalities depend on Vancouver initiatives when they engage in the process of building a supportive social network.

Level of formal education has a powerful impact on the HIV/AIDS epidemic in Vancouver. The BC Centre for Excellence in HIV/AIDS, through the Vanguard Project, has found that young gay men with less than high school education are twice as likely to be risk takers in the context of HIV/AIDS. Once infected, education levels appear to have a direct impact on how individuals manage their own health. For example, a 1997 BC Centre for Excellence study found a positive relationship between higher levels of education and the use of complementary therapies.

The recent advent of antiretroviral therapies has improved many infected individuals’ health status enough that they are returning to paid and unpaid work. There are only limited services available to train and retrain, counsel or assist those willing to re-enter the workplace. Little research has been done to determine the impact on disability claims if these attempts are short-lived. Few employers have addressed non-traditional work practices that would allow persons living with HIV/AIDS the necessary flexibility to succeed.

Occupational exposure to HIV/AIDS and minimizing the risk of infection are two key issues for health care providers. The province has established written guidelines on the prevention and management of occupational exposure to HIV. The BC Centre for Excellence in HIV/AIDS, in collaboration with the Workers Compensation Board, has produced a video, The Prevention and Management of Occupational Exposure to HIV/AIDS, that describes safe work practices and the management of occupational exposure while working with all clients.

CHRP data indicate that there are very high levels of unemployment for both MSM and IDUs living with HIV. For CHRP participants in stages I and II of the HIV disease, approximately 60% of MSM and 78% of IDUs were unemployed or volunteers. For CHRP participants in stages III and IV of HIV disease, approximately 69% of MSM and 87% of IDUs were unemployed or volunteers.

Other important issues relating to employment and working conditions include:

• Workplace policies with respect to seropositive employees
• Collective agreements that protect the rights of seropositive employees from workplace discrimination
• Prevention and management of occupational exposure to HIV
• Employee benefit plans that include disability support for workers
• Disability plans and government benefit programs that can reasonably allow those whose health stabilizes or improves to re-enter the workforce without jeopardizing access to benefits in the future

Safe, adequate and affordable housing is a major health determinant for people living with HIV/AIDS and a critical issue for many living at heightened risk for HIV disease. Because of the scarcity of such accommodation, particularly in the lower mainland of British Columbia, there is a critical and urgent need for additional housing options.

In terms of preventing HIV transmission, research from the BC Centre for Excellence in HIV/AIDS suggests that injection drug users with unstable housing were twice as likely to become infected with HIV. Another study conducted by the Centre for Excellence and Wings Housing Society shows that seropositive persons with unstable housing are more likely to be admitted to hospital for acute care than those in stable housing.

Most seropositive individuals are relatively young, do not own their own dwellings, and have not been in the workforce long enough to accrue the kinds of income support benefits needed to maintain even a simple dwelling in Vancouver.

Changes to social housing policy, particularly the federal government’s withdrawal of additional social housing support, have meant fewer available subsidized housing options in Vancouver’s downtown peninsula. Many neighborhoods have been unable to hold onto their affordable housing stock.

As a result, individuals living with HIV or at risk of infection often have to live in extremely marginal circumstances, such as single room occupancy hotels with shared bathroom and food preparation. These conditions are not conducive to the adequate nutrition and rest, freedom from stress, and medication regimes necessary to effectively fight HIV/AIDS.

2. INDIVIDUAL CAPACITIES AND SKILLS

Various prevention programs in Vancouver have focused on personal health practices and coping skills as ways of preventing the spread of HIV disease. Programs such as AIDS Vancouver’s Man to Man, needle exchange programs, and prison education and outreach programs all focus in part on providing the information and materials individuals need to make informed decisions around their own personal health practices.

To date, the idea of well being has generally been overlooked in HIV/AIDS care. For the purposes of this plan, well being includes physical, mental, emotional and spiritual well being. The promotion of well being focuses on those activities that maintain or improve individual well being, such as exercise, counseling, use of complementary or alternative medical therapies, and participation in community, faith or cultural activities.

The individual and collective benefits of an emphasis on well being can include:

• increased personal independence and maintenance of health
• reduced incidence of infectious disease
• reduced incidence of opportunistic infection
• reduced incidence of depression
• reduced incidence of harmful or risk behaviour among vulnerable populations
• increased community capacity to care for persons living with HIV and at heightened risk for infection

In terms of benefits to the health care system, the promotion of health and well being reduces hospital visits. It also means less strain on overextended community health care organizations.

The key to the healthy development of children in the context of HIV/AIDS is effective care, planning and support. The timing, nature and extent of the care and support required depend on the HIV status of the children and their families. For pregnant women, care and support can include access to effective HIV testing and prenatal care. For infants born to seropositive mothers, care and support is required from birth until the infant’s HIV status is determined. This can include access to appropriate testing for the presence of HIV and HCV, the option of oral antiretroviral therapy in the first day of life, adequate nutrition to replace breastfeeding, and appropriate support of the parent or guardian to ensure a safe and secure environment for the infant.

For children infected with HIV and their families, care and support can include access to lifelong appropriate medical care, involving a family physician and/or pediatrician and an HIV specialist for therapy, monitoring and follow-up. It can also mean a safe and secure home environment, access to community facilities, schools and training programs without discrimination, and

access to child-appropriate palliative care, home care programs, and bereavement counseling.

For children of HIV-positive parents, care and support can include appropriate immunizations, support for parents in making long term plans for the care and guardianship of their children, ongoing care when the primary caregiver is unable to provide care, and bereavement counseling.

Other important aspects of the care and support required for healthy child development in the context of HIV/AIDS include:

• Support for children living in poverty
• Financial support for nutrition, transportation and child care
• Access to appropriately developed sex education programs for children and youth
• Support for families struggling with complex medical therapies
• Support for families struggling with drug and alcohol issues
• Respite care for caregivers
• Support for mothers and pregnant women whose fear of child apprehension prevents them from accessing medical and support services

Early in the epidemic, hemophiliacs comprised a very significant proportion of persons infected with HIV due to their inadvertent use of tainted blood products. The Canadian Hemophilia Association has taken a lead role nationally in advocating for the interests of its members.

Today, persons with organic brain disorders, including the chronically mentally ill, comprise a large group of persons who are living with HIV or are at serious risk of infection. In Vancouver, the situation faced by persons living with both mental illness and addictions is critical, as evidenced by the recent HIV outbreak among injection drug users on the Downtown Eastside. While the outbreak received extensive media and public attention, those living with serious mental illness who are not injection drug users continue to face serious risk of HIV infection.

Key social environments in which the HIV epidemic occurs are the home, school, workplace and community, as well as the larger social service, health care, legal and correctional systems. These environments are shaped, in turn, by gender and culture. Each social environment poses unique challenges for the design, delivery and acceptance of effective HIV prevention and treatment strategies.

HIV-positive women face a variety of unique medical and psychosocial issues. The same social determinants that tend to make women particularly vulnerable to HIV infection also result in many HIV-positive women not receiving optimal care. Almost one quarter of all newly diagnosed infections in BC occur in women. The proportion of HIV-positive women who use injection drugs has increased, and a disproportionate number of HIV-positive women are aboriginal.

Diagnosis of HIV infection in women remains problematic. Unless women identify themselves as being injection drug users or partners of injection drug users, they continue to be viewed by many health care professionals as being at low risk, and many women are still not being offered testing. Lesbians, especially, are considered to be at low risk for HIV by physicians. As a result, women are still being diagnosed late in the course of HIV disease. It is likely that many women in the province remain unaware of their HIV status.

The provincial initiative recommending that all pregnant women in the province be offered HIV testing as part of routine pregnancy care has resulted in more than 6,000 women being tested in each of the last three years. However, it is clear that many women are still not being offered testing in pregnancy, while some are being tested without their knowledge and consent. HIV diagnosis of women in pregnancy not only decreases the rate of perinatal transmission, but also means that more women will potentially be able to access new antiretroviral therapies.

Women who are HIV-positive reside throughout the province. Often they are extremely isolated and lack supportive social networks. The stigma associated with HIV infection is very real for women, especially women in ethnocultural minorities and in small rural communities, as well as within the communities in Vancouver’s Downtown Eastside. Many women live in poverty lack appropriate housing, have difficulty maintaining adequate nutritional intake, lack transportation, and face major childcare difficulties. Some also face violence within their relationships and communities. As women continue to be the major caregivers in our society, child care, partner care, and/or parent care issues often preclude women from adequately addressing their own health care needs.

Transgendered persons living with HIV/AIDS face an enormous range of issues and challenges. Individuals may find themselves leading isolated lives. The stigma associated with HIV disease may be compounded by the stigma faced by the transgendered community in general. Access to non-judgmental care and support is essential.

The LGBT (Lesbian, Gay, Bisexual and Transgendered) Health Care Access Project conducted community consultations with the FTM (Female to Male) and MTF (Male to Female) communities in Vancouver. FTM community members indicated that care providers are becoming more informed on FTM health issues and, as a result, care providers’ interactions with the community were seen to be more respectful and effective.

Conversely, many of the negative experiences reported seemed to result from a lack of information about FTM issues in general, a lack of experience on the part of providers when working with FTMs, and negative attitudes held by care providers. Participants suggested that research, information and education must be circulated in the health care systems and society at large if these situations are going to be prevented in future.

MTF community members reported positive experiences, particularly at Downtown Eastside facilities, which were perceived as more respectful than centres in outlying areas. MTFs also said it was difficult to find knowledgeable, non-judgmental and non-prejudiced providers, informed people at government offices, and supportive people within gay and lesbian organizations.

The HIV/AIDS epidemic has disproportionately affected persons from particular cultural groups. The most statistically significant group is aboriginal persons.

It is difficult to estimate the number of First Nations people who are infected with HIV in Canada. There is no national database on the number of First Nations persons and aboriginals who are HIV-positive, as only AIDS cases are reported. Several HIV testing studies have been done within specific First Nations and aboriginal populations, however, any attempt to paint a national picture of HIV prevalence and incidence has been patchwork at best. The BCCDC keeps track of HIV test results and ethnic status but it does not know how many aboriginal people are HIV-positive who have not yet been tested.

There are many plausible scenarios that might explain why HIV infection rates among First Nations persons are actually higher than those currently reported by centres for disease control.

For example, relative to the general population, First Nations persons have higher morbidity and mortality rates. If poor health is accepted as a normal condition in a community, it is possible that initial symptoms of HIV, such as prolonged fever or diarrhea, might not be sufficient motivation to visit the doctor. This scenario is more compelling if health care providers are difficult to access.

In many First Nations communities there is still a strong social stigma against HIV and AIDS. If the social consequences of a positive test are high, a person may choose not to be tested. This is especially true if the person has any reason to doubt the confidentiality of the test results. Shame and fear of social isolation might also leave people with little alternative but to conceal that they have tested HIV-positive.

If HIV status is directly or indirectly hidden, there are important implications for receiving proper care and succeeding with effective prevention programs. With the implementation of more effective treatments, the consequences of not accessing appropriate treatment and care could be especially severe. Also, someone who does not know they are HIV-positive might still engage in behaviour that unknowingly puts uninfected persons at risk.

The epidemic of HIV disease is still in its early stages for First Nations. Persons living with HIV can be asymptomatic for many years before their immune systems break down and they succumb to AIDS. Many First Nations persons have only become infected with HIV in the last few years. This means that the highest need for care and treatment and support is still in the future.

The BC Aboriginal HIV/AIDS Task Force released a comprehensive report in 1999 entitled, The Red Road: An Aboriginal Strategy for HIV and AIDS in BC. Recommendations from this document are referenced in the companion VH/ACCC Strategies Report.

Language barriers, different ethnocultural norms and persistent myths about HIV/AIDS have contributed to a limited awareness of risk behaviours and prevention strategies in newcomer populations.

Language is still the largest barrier to care faced by HIV-infected persons who don’t speak English. Over 50% of children in Vancouver schools come from homes where the mother tongue is not English, and over 100,000 people in the GVRD speak neither English nor French.

Service providers are often unaware of the risk for HIV in different ethnocultural groups. It is important to recognize what may have put newcomers at risk before immigrating to BC. For example, unsafe injections during mass immunization campaigns have been cited as the main reason for transmission of HIV cases in developing countries.

Some newcomer groups believe that AIDS is a "gay disease." As a result, many women do not realize that they are at risk when they are in a monogamous heterosexual relationship. They either do not recognize that their male partners may also have sex with men, or they do not realize injection drug use is prevalent in certain sub-cultures within their communities.

Other groups are concerned about intergenerational and intercultural conflict when behavioural norms for Canadian youth are perceived as wrongful by newcomer parents. This can result in overly restrictive and/or abusive parenting that may increase the likelihood of youth leaving home and ending up on the street. There is also concern for gender and power relationships in newcomer communities and the increased risk for transmission of HIV to vulnerable partners in abusive relationships.

An additional barrier to some newcomer populations, specifically refugee claimants and those who have not yet qualified for residence status, is the lack of coverage under the Medical Services Plan. In 1995, the Ministry of Health published a discussion paper on a proposed multicultural health policy framework. The paper identified key obstacles to equitable health status and access to health services in a multicultural society, including:

• Health care providers who may lack knowledge or sensitivity to cultural norms, beliefs, and family and social relationships relevant to the health status of individuals from other cultures
• Under-representation of ethnocultural minorities in professional caregiving roles and in decision-making roles at most levels in the health system
• Language and communication barriers in health care encounters
• Needs of diverse populations that are not being considered in health service planning

The BCCDC data indicate that young gay and bisexual men continue to seroconvert at alarming rates. Homophobia, racism, and other forms of discrimination are factors that contribute to gay men’s vulnerability to a range of health concerns, including HIV infection. The impact of growing up gay in a homophobic world may hurt the development of healthy self-acceptance and self-esteem. It may also stand in the way of development of interpersonal skills needed to respond effectively to health concerns.

The Vanguard Project has found a strong correlation between early experiences of non-consensual sex and ongoing risk behaviour in adults. The study suggests that traumatic experiences early in life may discourage or prevent gay men from establishing coping skills around sex, work, where they live, and social networks. A lack of self-acceptance, low self-esteem, and limited social support in the community can increase vulnerability to health concerns such as HIV, STDs, drug and alcohol use, anal health problems and violence in relationships.

Male sex trade workers are especially vulnerable. The Vanguard Project has found that male sex trade workers are vulnerable to HIV infection because of unfavourable living conditions, substance use and sexual risk behaviour. Unstable housing appears to place male sex trade workers at particular risk for HIV infection.

The Vanguard Project also found that HIV-positive gay men with incomes less than the poverty level were twice as likely to die within a 10-year period relative to gay men with higher incomes. Young gay men with less than a high-school education were nearly twice as likely to be risk takers. And, young gay men with a history of sexual abuse were twice as likely to be risk takers.

The LGBT Health Care Access Project found that many gay men reported using the health care system with caution. It was perceived that homophobia exists across the system (emergency rooms, specialists and male doctors were mentioned specifically), and this creates difficulties in accessing health care and disclosing sexual orientation, sexual practices and health concerns.

Gay or gay-friendly doctors were found to be important but difficult to find. Youth in particular reported difficulty in finding gay-friendly clinics. Gay First Nations men, Latino men and gay men of colour noted that access was an issue for them. Gay men who are immigrants or refugees also reported a fear of disclosing sexual orientation.

There are many important legal issues that affect people who live with HIV/AIDS. These include:

• Medical and financial decisions in the event of personal incompetency
• Choices in health care interventions
• Confidentiality and disclosure
• Discrimination on the basis of sexual orientation and/or HIV status
• Informed consent (for example, in relation to testing, treatments and participation in clinical trials)

The availability of accessible and affordable legal services is limited. While legal aid is available to people with low incomes, the eligibility requirements are restrictive. Only those individuals with very low incomes are able to obtain legal aid. Access to legal aid is becoming even more difficult since the BC government cut $6 million from the budget of the Legal Services Society in February 1997. For people living with HIV in need of legal advice who do not qualify for legal aid, the options are limited: a private lawyer or a community advocacy organization with limited capacity to deal with legal issues. Eight percent of CHRP participants received legal assistance from an agency, group, organization or individual at least once in the two weeks prior to being interviewed.

The 1998 Supreme Court of Canada decision in R. v. Cuerrier held that individuals aware of their HIV-positive status may be found guilty of a criminal offence if they do not disclose their HIV status to a partner before having unprotected sex. This decision has created an urgent need for education, both for people living with HIV and also for a myriad of service providers such as health care workers, counselors and therapists for whom the decision will have repercussions in areas such as confidentiality and duty to warn.

New legislation pertaining to guardianship has been promised for some time and will have an impact on individuals living with HIV/AIDS.

Although the mandates of the federal and provincial corrections and forensic psychiatric services extend throughout the province, service provision is concentrated in the lower mainland. Corrections and forensic psychiatric services are not physically located in Vancouver (with the exception of the Vancouver Pretrial Services Centre and the Forensic Psychiatric Outpatient Clinic). However, offenders use the HIV/AIDS programs and services provided by Vancouver hospitals (primarily St. Paul’s) and community-based agencies such as AIDS Vancouver and BCPWA.

Many offenders, especially those who serve short sentences in BC correctional institutions (provincial), live in Vancouver prior to and after incarceration and use other services provided by the community, such as income assistance, housing and mental health care. Most of the halfway houses to which inmates from federal institutions in the Fraser Valley are released are in the greater Vancouver area.

Planning for HIV/AIDS must include provision for the medical and the psychosocial support needs of people in correctional institutions and on supervised community release. Serious efforts to implement effective harm reduction and prevention programs must be increased in an attempt to stem the HIV epidemic. Without an effective and aggressive general plan to standardize and improve all current facets of HIV/AIDS care in all institutions, there will be staggering increases in the number of seropositive inmates living in and being released from prisons.

The federal system is responsible for offenders serving sentences of two years plus a day. All male offenders reside in federal institutions located in the Fraser Valley, with the exception of one institution near Victoria. Federal female offenders are provided with care and custody through a ministerial agreement with BC Corrections and reside at the British Columbia Correctional Facility for Women in Burnaby.

Voluntary nominal (i.e., not anonymous) testing for HIV is offered to every offender upon intake, at the commencement of the sentence, and again upon transfer to other institutions during incarceration. As well, an inmate can present him or herself at any time during their sentence for testing.

Currently, all offenders are offered care and treatment on a voluntary basis which is in accordance with the BC Centre for Excellence in HIV/AIDS "Therapeutic Guidelines for Care and Treatment" All offenders who are HIV-positive are provided with periodic consultant appointments as follow-up for care and treatment, in collaboration with the team of specialists at St. Paul’s Hospital. Psychological support is available in all federal correctional settings on request or by referral from health services staff.

In the Correctional Services of Canada (CSC), the requirements for vitamin and nutritional supplements are reviewed on a case by case basis with the health care team and consultants from St. Paul’s Hospital.

Offenders can access treatment and medications through two distribution programs: directly observed therapy or self directed administration. This is negotiated and provided at the choice of the offender.

Each offender is assessed and presented individually to the National Parole Board for possible compassionate release once they have reached the end-stage of HIV/AIDS disease.

CSC reports that harm reduction activities such as bleach and condom distribution, as well as peer counseling and methadone maintenance programs, are fully supported in BC federal correctional facilities. Quarterly routine audits are completed to ensure that adequate supplies of quality products are discreetly available to all offenders at all sites.

All offenders in this system are serving sentences that are two years less a day. Those offenders who are incarcerated during the terminal stage of AIDS may be eligible to receive a compassionate discharge and make use of medical facilities in the community. Those offenders who are not discharged and require acute medical care are transported to a local hospital. The HIV/AIDS program at St. Paul’s Hospital has treated several provincial inmates in the acute or terminal stages of AIDS.

None of the BC provincial correctional facilities has an accredited medical facility and to date there is no plan to create "hospitals" within the provincial system. Inmates requiring hospital-based medical care will continue to be referred out to local hospitals. Given the projected increase in HIV among the inmate population over the next few years, the presence of correctional facilities within a health region will have a significant impact on hospital resources.

Community assessments are completed on every conditionally-released federal and provincial offender. Probation and parole officers assess the available personal and community support, police and community resources. Issues addressed range from housing and substance use to medical needs. If the offender discloses that he/she is HIV-positive, resources such as AIDS Vancouver, BCPWA, and St. Paul’s Hospital may be mobilized. However, there is currently no funding for the services provided by community agencies to released offenders in transition between institution and community. This has been identified as one of the most serious gaps in service. As well, probation and parole officers and halfway house staff need training and education regarding the resources available to persons with HIV/AIDS.

Inmates requiring psychiatric assessment or mental health services may be placed with Forensic Psychiatric Services (FPS). FPS provides mental health care to inmates of BC correctional facilities through staff treatment nurses, physicians and psychologists, as well as through and locally contracted psychiatrists and psychologists. FPS also provides inmates with HIV/AIDS nutritional services and counseling, vitamin and nutritional supplements and extra meal portions when needed.

Patients at FPS who become ill with HIV/AIDS-related conditions are transferred to local hospitals for acute medical care.

All correctional facilities routinely offer HIV counseling and testing on a voluntary basis to all offenders upon entry to the system. In federal centres, a confidential nominal testing procedure is offered by health services staff with extensive pre- and post-test counseling. Anonymous testing by outside agencies allows maximum access to testing and is currently being offered on a trial basis in some provincial corrections facilities. In the BC forensic and correctional system, some pre- and post-test counseling is provided by nurses and physicians; however, anecdotal evidence suggests that most patients do not receive adequate pre- and post-test counseling.

Federal and provincial corrections plan to continue to provide access to community groups in the HIV/AIDS field to visit and provide services to offenders. In provincial institutions, these include BCPWA, clergy, native elders and public health nurses who provide resource information and psychological and emotional support. Educational events sometimes allow offenders to obtain information anonymously. In some institutions, support groups have been established. In federal institutions, public health nurses do not provide services as yet, but if anonymous testing was to be implemented, this would change. AIDS Vancouver and BCPWA’s Prison Outreach Project do establish and support peer counseling programs, education fairs, educational programs and individual support as requested in federal institutions. However, neither federal nor provincial corrections provide funding to these external agencies to cover transportation and other related costs of providing these programs.

Access to multidisciplinary community and acute health care services has been a cornerstone of Canada’s health care system. In the current context of regionalization, many service models are being re-examined to ensure that service is being delivered as effectively and economically as possible.

A community health centre is a user-friendly facility that provides local residents with a range of health services and an overall approach reflecting the perspective of the public. Programs are integrated whenever possible to simplify their access and use by the community and are delivered by multidisciplinary teams. Community health centres are designed to improve access, integrate service and administration, reform primary care, use a population health approach in service design and delivery, and to involve the consumer and the public.

Community-based organizations recognize there is a pressing need to develop better systems for case management in partnership with clients, the professional community and government. Integrated case management focuses on the management of clients’ needs across provider and agency lines to link clients to the appropriate level of resources. Case management is a partnership between the manager and the client; it entails the continual assessment and follow up of the client’s needs. Case management is particularly important for clients who have multiple problems, such as HIV/AIDS and substance abuse or psychiatric illness, because they need to have access to many organizations and resources.

Community clinics are attempting to overcome the barriers to accessing physician care through promoting the one-stop-shop model of care, where harm reduction modalities and other prevention services are made available at one site along with physician care. In the community clinic setting, payment of physicians through salary or sessions eliminates the barrier of fee-for-service; clients have the additional benefit of a multidisciplinary team approach to their care. Counselors with cultural competence can be of great assistance to physicians in helping the clients to understand and accept the treatment regimens and life-style choices that will optimize their health and reduce the risk of transmission of HIV to others. It is also easier to provide interpretation in a variety of languages in a clinic setting than in a private office.

Populations served by a community clinic can much more readily access the physician services they need for prevention and treatment of HIV. Neighbourhoods with the highest concentration of disadvantaged populations living in poverty and social or cultural isolation are natural settings to build upon the community clinic model, and benefit those people with HIV who face the most barriers to physician care.

Access to physician services is essential for the management and prevention of HIV infection. Through early identification of HIV infection and treatment with appropriate medications, viral loads can be reduced to undetectable levels with subsequent enhanced health for the individual and decreased risk of transmission to others. For individuals with AIDS-defining illnesses, access to physician care is often complex, especially when AIDS affects more than one system and various specialists are required. In addition to treatment of HIV/AIDS, access to physician services for addictions, including methadone treatment, forms part of the spectrum of harm reduction services aimed at decreasing the spread of HIV.

In Vancouver, the most common barriers to accessing physician care include poverty (including lack of transportation and telephones), social isolation, language and cultural barriers. Homophobia and heterosexism within the health care system present additional barriers. Limited availability of physicians providing HIV/AIDS-specific services and methadone treatment further compromises access.

For someone requiring specialist care for the medical complications of HIV, several different physicians may be involved in the person’s care. It is difficult for even the most sophisticated consumers of health care to negotiate their way through the maze of private fee-for-service offices, public clinics and hospitals. This complex arrangement of physician services is particularly challenging for anyone unfamiliar with the health care system.

Methadone is used in Canada for the treatment of opiate users. Oral methadone has proven to be effective in suppressing opiate withdrawal following cessation of drug consumption. Methadone is also prescribed daily, over months or years, with the expectation of reducing opiate use and associated harm. This is called methadone maintenance treatment within the medical community.

By 1994, more than half of all methadone patients in Canada were located in British Columbia, the majority in the Vancouver area. While methadone is not the solution to the growing epidemics among mixed injection drug users in Vancouver (those using heroine in conjunction with other substances), there is strong evidence that methadone programs can assist many heroine users in reducing their injection use.

In British Columbia, methadone can only be prescribed physicians specifically licensed by the BC College of Physicians and Surgeons, and the number of patients for whom a licensed physician may prescribe methadone is restricted.

Until recently, access to methadone has been extremely limited, particularly in the Downtown Eastside, where until mid-1996 there was only one methadone-licensed local physician. By 1997, some clinic physicians had obtained methadone licenses and the number of methadone spaces in the Downtown Eastside had increased to about 150.

For offenders in provincial and federal correctional facilities in British Columbia, there is access to a methadone maintenance intervention and treatment program. This program encourages the offenders to participate in substance abuse counseling and provides extensive support. Once the offenders are released into the community, the correctional staff liaise with the community support network established by the BC College of Physicians and Surgeons.

While the Ministry of Health, in conjunction with the BC College of Physicians and Surgeons, has increased the number of physicians authorized to prescribe methadone, more action is still needed in this area:

• Provide coordinated, quality-controlled methadone programming with evaluation and accountability in the Downtown Eastside and throughout the Vancouver area
• Expand the capacity of the Vancouver downtown methadone system to serve opiate-addicted people
• Provide methadone programming within settings that also offer an array of basic life skills, recreational and medical supports

The relative absence of local community services to support addicted people has contributed to some reluctance among agencies and residents to support expanded methadone availability, particularly in the Downtown Eastside. Residents and users have also expressed concerns about diversion of methadone to the streets and the pharmacological effects of methadone itself.

St. Paul’s Hospital has played a major role in the provision of care to individuals with HIV/AIDS since the early 1980s. In February 1997, an 18-bed HIV/AIDS ward was opened and staffed by a designated multidisciplinary team of physicians, nurses, pharmacists, a clinical nurse specialist, a dietitian and social workers. There are four social workers: one assigned to the HIV/AIDS ward, another who sees off-service patients and two aboriginal social workers who work half-time in the hospital and half-time in the community following aboriginal clients. The average daily inpatient caseload is 30 cases. Patients who are not admitted to the HIV/AIDS unit are cared for on other units in the hospital (e.g., palliative care or medical units) and by staff in those areas.

Increasing numbers of injection drug users are being admitted to the hospital. In 1994, there were an average of 43 IDU discharges per month and in the fiscal year 1997-98 an average of 92 IDU discharges per month. Data from the last fiscal year indicate 46% of these IDU patients are HIV-positive and approximately half of all IDUs are admitted for problems directly related to the use of injection drugs (e.g., abscesses, sepsis, endocarditis, etc.). The IDU Consult Team, consisting of an addiction physician and the clinical nurse specialist for HIV/AIDS, receives medical referrals regarding hospital management of care (i.e., drug withdrawal, pain control, HIV prevention, education and support) and discharge planning.

Vancouver General Hospital has an HIV/AIDS clinical care team that is composed of one social worker and four doctors working rotating shifts to ensure that Monday to Friday there is always an on-call HIV/AIDS specialist. The team is involved in consultations, assessments, interventions and treatment with each patient who is referred to them. Referrals come from social workers, physicians and other health care workers, both inside the hospital and from the community.

Given the large number of injection drug users who are seen by the HIV/AIDS clinical care team at the Vancouver General Hospital (currently estimated at 85% to 90% of all referrals), the clinical care team works closely with the Chemical Dependency Resource Team. This degree of collaboration enables the HIV/AIDS team to provide appropriate in-hospital care and community referrals for the patients’ HIV/AIDS status and their substance abuse. In addition to the direct medical care provided by the hospital, patients and their families have access to counseling, education and social work services to ensure awareness of appropriate community resources and discharge planning options.

All the services of home-based care uphold the individuals’ dignity and the right to remain at home as long as possible and with full participation in their own care. Waiting lists continue to grow and organizations struggle to serve as many people as possible with limited resources. The epidemic curve currently allows agencies to serve only those most in need, often because of poverty and other social issues, with the result that those living with HIV/AIDS who are less ill can only access the most rudimentary services and support.

The Vancouver/Richmond Health Board is responsible for a range of home-based care and support. Case managers determine the level of home support required for those who are ill at home and unable to care for themselves adequately. Reassessments are conducted when the level of need changes. Home supports services can include basic care, housecleaning, laundry and other assistance with daily living tasks. Home care nursing support is available from local health units. Home care nurses are able to assist with medication management, wound care and dressings.

Increased pressure has been placed on the home care system as patients are discharged earlier from acute care, but funding has not kept pace with needs. It is anticipated that home-based care services will not be able to respond adequately to the projected volume of requests from individuals who will experience treatment failure and the onset of AIDS symptoms after lengthy infection periods. Current issues include people living with HIV in single room occupancy hotels and other sub-standard or unstable housing situations that make it difficult to provide effective home care nursing.

The Dr. Peter Centre Day Program provides a unique health care service to adults living with HIV/AIDS who face life threatening health deterioration. The focus is on fostering the participants’ abilities to manage their own care to the greatest extent possible. Programs and services include hot meals, nursing support and health education, individual and group therapy, nutrition consultation and education, recreation and exercise, socialization, complementary therapies, primary worker support and individual care plans, transportation assistance and respite and support for partners, family members and friends.

The Vancouver Native Health Society operates a storefront drop-in program which offers a range of support services, including food programs, nursing support and physician care, medication management, outreach to single room occupancy hotels and other residences in the Downtown Eastside neighborhood, and a range of support groups and other services. The focus includes reaching out to marginalized, often multiply diagnosed Downtown Eastside residents who otherwise may face difficulties in accessing the level of care and support they require.

Friends for Life, established in 1983, provides more than 50 health and wellness programs without charge to its members. The goal of all programs is to help members cope with the anxiety and stress of living with a life threatening illness while improving their overall quality of life. Among the programs available are support groups, one-on-one counseling, a resource library, workshops on a wide variety of topics, massage therapies, social support and meals.

A significant number of people living with HIV/AIDS have been kept in acute care facilities considerably longer than required while awaiting placement in appropriate long-term care facilities. Residential care and hospice service for persons living with HIV/AIDS in Vancouver is currently offered through May’s Place, St. James Community Services Society, and by the Dr. Peter Centre Residence. In addition, referrals are sometimes made to long-term care facilities for individuals living with HIV who require 24-hour care and support.

Three percent of CHRP participants were patients in a residential care facility, nursing home or hospice for at least one night in the two weeks prior to being interviewed.

Medical equipment such as wheelchairs, bath benches and electric scooters are available to persons on BC Benefits who are able to establish medical need for such equipment. Additional assistance in this area is available from occupational therapists who work out of local health units. Those on private disability plans may be able to recover part of the costs associated with such equipment.

For those who are ineligible under the above programs, there are a number of community agencies who provide loans of medical equipment. The Red Cross has a large medical equipment bank, as does AIDS Vancouver’s medical equipment loan program.

Five percent of CHRP participants had to buy, rent or replace special medical equipment, such as eyeglasses, canes or nebulizers, in the two weeks prior to being interviewed.

Dr. Michael O’Shaughnessy, Centre Director for the BC Centre of Excellence in HIV/AIDS, has predicted that malnutrition and wasting will become the leading causes of death in the current AIDS population in British Columbia (April, 1999).

Opportunistic infections associated with HIV/AIDS often render a person unable to shop for, prepare or eat wholesome meals. The requirements of highly active antiretroviral therapy, poverty, limited facilities and the personal skill level of many HIV-positive individuals further complicate people’s abilities to meet their nutritional needs. The consequence is weight loss and increased risk of compromise to the immune system.

Maintaining healthy nutrition levels, therefore, is vital to the health and well-being of people living with HIV/AIDS. Many agencies and departments of health are now providing more than basic food services. People living with HIV/AIDS can obtain nutritional counseling through their physicians and various clinics or agencies on an outreach basis.

Several agencies provide free or low-cost meals to people living in poverty, although few have the capacity to provide more than very basic meals. Most of the agencies are just beginning to look at the unique requirements of the HIV/AIDS population. For example, the special diets required by people living with HIV/AIDS because of the disease and/or medication are beyond the scope of most agencies given their limited resources. Similarly, line ups and the lack of home delivery can preclude some people in the end stages of the disease from accessing service.

Two AIDS service organizations offer grocery programs which supplement the food and personal hygiene items that individuals on limited incomes are able to purchase. Supplementary grocery programs are a necessity for many people living with HIV/AIDS. For example, in 1998 more than 700 people living with HIV/AIDS used either the AIDS Grocery or Vancouver Native Health Food Bank each week.

Good preventative dental care is an important part of a complete health program for people living with HIV/AIDS. However, given the fact that dental care is not well integrated into our overall health care system, cost barriers can be large and at times insurmountable for persons living on low incomes. Dental care in the Vancouver area is largely available through dentists in private practice. People living with HIV/AIDS who are either employed or living on a private disability plan may have the costs of such services covered through a dental plan. Those without access to such a plan must pay the full cost of dental care. Persons receiving income assistance are eligible for emergency dental service.

Psychiatric complications may develop as a result of HIV/AIDS or mental illness may be present prior to the person contracting HIV. There are also a number of people who have multiple diagnoses including psychiatric illness. The psychiatric complications of HIV disease include depression, adjustment disorders, anxiety or panic disorders, delirium, mania, psychosis and organic brain disease or dementia. These conditions are common with HIV disease progression and they are treatable. The causes of these psychiatric symptoms include medication side effects, HIV-related central nervous system disease, the cumulative effect of multiple stressors and losses, characteristics or genetic predisposition of the person and substance abuse.

There is increasing evidence that people with serious mental illness living in large urban centres represent a group vulnerable to contracting HIV. The reasons for this are multifaceted and relate to the nature of mental illness. They include cognitive deficits and psychopathology, ambivalence, discomfort in traditional health care settings, vulnerability to sexual victimization and self-medication with drugs and alcohol. Clients with chronic mental illness need special education, such as harm reduction, outreach and follow-up services. Historically, clinic-based mental health services have been under-utilized by this population.

At present, there are insufficient psychiatric services for people with HIV/AIDS and serious mental illness in Vancouver, although there are some specialized services in the Downtown Eastside. There are limited resources for people with less severe mental health difficulties or those requiring individualized support from a private psychiatrist. Services between provider agencies are poorly coordinated and waiting lists are often long. The lack of appropriate and coordinated service delivery between agencies and organizations has the biggest impact on those clients with multiple diagnoses.

Clients with multiple diagnoses include those who have a psychiatric disability, chemical dependency, HIV/AIDS and/or other conditions. These clients may not adhere to treatment regimens or use traditional medical or psychiatric services that exists for people with HIV/AIDS.

The inter-agency Vancouver Multiple Diagnosis Committee has identified the following gaps in services that also need to be addressed:

• Supported housing options throughout the Vancouver area
• Better access to detoxification programs and facilities
• Recovery houses and treatment centres that welcome women and their children
• Grief and loss counseling
• Women’s health centres with on-site child care
• Alternative treatments and therapies
• Education of mental health professional about HIV/AIDS and its relationship to psychiatric illness, multiple diagnoses and treatment
• Support for GVMHS efforts to develop educational strategies for case managers and physicians

Palliative care is the combination of active and compassionate therapies intended to comfort and support individuals and families who are living with a life-threatening illness. Palliative care strives to meet physical, psychological, social and spiritual expectations and needs, while remaining sensitive to personal, cultural and religious values, beliefs and practices.

Palliative care is planned and delivered through the collaborative efforts of an interdisciplinary team including the individual, their family of choice, caregivers, and service providers. Palliative care is provided in the home, in free standing hospices, in hospitals with or without a designated palliative care unit, and in long-term care facilities.

Respite care offers short-term elective admissions to facilities with designated respite beds. The benefits are two fold: the family and caregivers are given a rest from caregiving and the client’s symptom management and care needs can be reviewed by the palliative care team. Planned respite admissions allow clients to remain at home with greater support.

Additional knowledge and skills are needed by caregivers in HIV palliative care to understand and meet the needs of the growing numbers of injection drug users who are dying in the city. Caregivers are also not well prepared to deliver palliative care in the prison systems. Again, the reasons for this are unclear and need to be openly addressed.

Persons living and dying with AIDS, who have needed placement prior to their imminent death, have not been accepted into traditional continuing care intermediate or long-term facilities. This is one area that the community needs to re-examine as HIV disease becomes more of a chronic condition.

Other problems faced by clients who wish to remain at home are:

• Payment for drugs that are received free in hospital
• Payment for dressings and other supplies that are supplied free in hospital
• Insufficient nursing and ancillary supports after hours and on weekends
• Lack of compensation for family or friends providing primary care at home who have to leave employment
• Lack of coordination between hospitals, family physicians and care providers
• Substandard care for people living in single room occupancy hotels