The Actions:
What We Will Do Between Now and 2010

4. Strengthen diagnosis, care, treatment and support services

Rationale

Although the quality of HIV care and support in Canada is among the best in the developed world, there are still gaps and inconsistencies. Some people -- particularly those in rural and remote areas, but also many in marginalized communities in urban centres 88 -- still struggle to get the quality care and treatment they need. Strengthening diagnosis, care, treatment and support is directly linked with stepping up prevention efforts.

As the needs of people with HIV become more complex, services must adapt. The main challenges in HIV diagnosis, care, treatment and support in Canada in 2004 are:

  • the significant number of people with HIV who are not diagnosed until they are in the later stages of HIV disease and therefore do not have access to appropriate treatment, while managing such complexities such as:
    • demanding treatment regimens that are difficult for people with HIV to maintain
    • the side effects associated with HAART, including cancer, lipodystrophy, heart disease, neurocognitive impairments, liver disease and kidney disease
    • the increase in drug resistance that is associated with lack of adherence to HAART regimens
    • transmission of drug-resistant virus
    • the complex treatment needs of people who are co-infected with HIV and hepatitis C
    • the complex treatment and support needs of people who have addiction or mental health problems
    • the high rate of depression in people living with HIV
    • the changing care needs associated with aging and HIV
    • the unique treatment needs of women with HIV (e.g., managing drug treatments during menopause)
  • funding and policy issues, including:
    • the time it takes to approve and license new drugs
    • barriers to having newly approved drugs listed on provincial/territorial formularies
    • lack of access to complementary therapies
  • practical and psychosocial issues, including:
    • the need for more assistance with basic needs, such as income, housing, food and disability benefits
    • the lack of employment opportunities that can accommodate people with HIV
    • the challenge of living many years with an infectious, life-threatening illness
    • the impact of stigma and discrimination
    • dealing with relationships and disclosure and the need for effective prevention strategies for people with HIV
    • high rates of depression and the impact on people's health
    • the increase in AIDS-related deaths and the lack of palliative care services for people with HIV

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Increasing access to testing

People who are diagnosed early and offered appropriate treatment and support live longer in better health than those who are not diagnosed until late in the course of HIV disease. They are also better able to prevent the spread of HIV to others. When voluntary HIV testing is accompanied by pre- and post-test counselling -- as it always should be -- it is both an effective early intervention (i.e., a good way to link people who are infected with care) and an effective prevention strategy (i.e., it gives those who may be engaging in risky behaviours information and support for behaviour change).

All testing should continue to be undertaken only with pre- and post-test counselling and informed consent, and people should opt in rather than opt out of testing. Promoting access to voluntary testing to communities with high rates of HIV infection (i.e., gay men, people who use injection drugs, Aboriginal people and people from countries where HIV is endemic) is a cost-effective way to detect the virus early and link people with HIV to support, information and treatment that can prolong their lives.

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Improving treatment effectiveness

After more than a decade of experience with HAART, clinicians and people living with HIV are identifying problems with treatment failures, drug resistance and side effects and the challenges of treating people who are co-infected with hepatitis C or who have concurrent disorders, such as mental health problems or addictions. Changing and complex care needs highlight the need to continue to develop: new, more effective treatments; strategies to overcome barriers to adherence and reduce drug resistance, such as simpler treatment regimens; vaccines; and a cure. Strategies also need to be developed to address the currently poorer treatment outcomes for women.

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Improving access to treatment

Many Canadians with HIV -- such as those in small, rural or remote communities, those in correctional facilities, new immigrants, Aboriginal persons, women, poor people, people who use injection drugs and sex workers -- continue to face inherent barriers to accessing treatment. Some barriers relate to geography and distance, some to culture and language, some to bureaucracy and regulation, others to stigma and discrimination. For example, people who use injection drugs are sometimes denied access to antiretroviral therapy on the assumption that they will not be able to adhere to complex treatment regimens; however, recent research indicates that, with appropriate education and support, people who inject drugs have the same adherence rates as other people with HIV.89 Prisoners in Canadian provincial/territorial and federal prisons continue to have problems accessing treatment equivalent to that outside. In particular, there is evidence suggesting that a significant number of prisoners discontinue antiretroviral treatment while in prison.90 Access to medical marijuana remains an issue for PHAs.

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Strengthening support services

People with HIV are a highly diverse group, socio-economically and culturally. While some are working and managing their illness, a growing number are struggling to meet basic needs and to live a full life in the midst of a long-term, life-threatening illness. They need a wide range of culturally appropriatesupport services that can assist with practical as well as psychosocial needs -- housing and food as well as social support and prevention strategies. Many of the services that people with HIV need are beyond the traditional mandate of care and support programs. To meet these needs, services must adapt.

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Providing quality end-of-life care

With the advent of HAART in the 1990s, many of the buddy and hospice programs developed for people living with HIV in the 1980s have been closed down or reduced. With the number of people being diagnosed in late stages of the disease, the increase in drug resistance, more people failing on HAART, and the sometimes life-threatening side effects of treatment, more people are once again dying from HIV/AIDS and need access to compassionate hospice palliative care.

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Desired outcomes

  • All people in Canada with HIV have access to a full continuum of appropriate health services, from diagnosis to palliative care.
  • All people in Canada with HIV live longer in better health.
  • Treatments for HIV are more effective, with fewer side effects.
  • All people in Canada have access to high quality rehabilitation programs and services.
  • All people in Canada with HIV have access to culturally appropriate support services and enjoy a better quality of life.
  • All people in Canada with HIV have access to treatment information to make informed decisions about available treatments.

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Targets

By 2010:

  • Testing rates in communities at risk increase without compromising informed consent, counselling and confidentiality.
  • The number of people with HIV diagnosed in late stages of the illness is reduced.
  • Over 95% of people living with HIV report that they have appropriate, timely access to primary care and specialist services.
  • Everyone living with HIV has urgent access to the appropriate antiretroviral therapy with additional support.
  • The rate of adverse events associated with HAART in Canada is reduced.
  • Clinical outcomes for people co-infected with HIV and hepatitis C improve.
  • The average time it takes to approve a new drug or therapy in Canada drops significantly.
  • All people living with HIV have access to pharmacare programs that cover the majority of their medication costs.
  • The average life span of a person living with HIV diagnosed in his or her thirties is at least 60 years.
  • People with HIV report fewer problems accessing affordable housing, food and other basic needs.
  • All people living with HIV have access to end-of-life care that allows them to die with dignity, free of pain, surrounded by their loved ones in a setting of their choice.

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Actions

4.1 Identify the barriers to HIV testing in communities at risk and develop culture/gender-sensitive and age-appropriate strategies to promote voluntary confidential/anonymous HIV testing (including pre- and post-test counselling) in each community.
4.2 Take steps to improve the quality and effectiveness of HIV/AIDS therapies, including:
  • speeding up the new drug review process to give people living with HIV/AIDS faster access to promising therapies
  • ensuring that all people living with HIV/AIDS have access to clinical trials, regardless of where they live or are being treated
  • implementing a national pharmacare program as recommended in the report of the Commission on the Future of Health Care in Canada91
  • providing equitable access to microbicides and vaccines when and as they are developed
  • developing and maintaining up-to-date national HIV treatment standards that will ensure greater consistency in HIV care
  • promoting and funding rehabilitation programs and services for people living with HIV
  • addressing side effects of treatment with rehabilitation programs and services
4.3 Increase access to evidence-based complementary and alternative therapies by:
  • funding research on complementary and alternative therapies in the treatment of HIV
  • developing cost recovery models for people living with HIV for those treatments found to have positive impacts
  • ensuring the safety of these products
  • assessing any potential interactions with HIV therapies
  • educating health care providers about the potential benefits of these therapies
  • providing easy access to information on complementary and alternative therapies that are safe and effective.
4.4 Develop and implement treatment programs designed to advance/improve care for people co-infected with HIV and hepatitis C.
4.5 Develop comprehensive diagnosis, care, treatment and support programs that meet the unique needs of communities affected by HIV, including:
  • ensuring that people who use injection drugs, other people in marginalized communities and prisoners have the same access to the best available HIV treatment and pain management as other people living with HIV/AIDS
  • improving access to existing harm reduction measures for people living with HIV (e.g., needle exchanges, methadone programs)
  • ensuring that people with HIV who inject drugs have the opportunity to maintain or begin medications (e.g., antiretroviral therapy, methadone) when incarcerated and when they make the transition back to the community
  • improving services for people living with HIV who have mental health issues, including depression
  • educating rehabilitation professionals on HIV and their role in diagnosis, care, treatment and support
  • addressing the housing, income, employment and other social needs of people living with HIV
  • addressing the psychosocial issues associated with a long-term, life-threatening illness
  • ensuring people living with HIV have access to good end-of-life care, including home care, respite care, compassionate leave, pharmacare, access to non-prescribed therapies and access to hospice palliative care professionals 24 hours a day, 7 days a week.

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Research and monitoring

4.6 Conduct post-marketing surveillance (i.e., monitor and assess the long-term impact [benefits and risks] of approved drugs and their potential toxicities by:
  • bringing together people with HIV, drug manufacturers, clinicians and regulators to establish a system for drug safety monitoring
  • developing electronic networks to support the rapid exchange of drug, drug safety and adverse event information
  • requiring pharmaceutical companies to develop plans for post-marketing surveillance as part of drug development.
4.7 Conduct research into key urgent aspects of HIV diagnosis, care, treatment and support, including:
  • strategies to ensure that all people with HIV are diagnosed and receive the best available treatment
  • drug resistance and treatment strategies to reduce it
  • factors that affect adherence and strategies to improve adherence
  • new antiretroviral therapies and regimens
  • effective treatments for people who are co-infected with HIV and hepatitis C
  • complementary therapies
  • organ damage
  • child pediatrics
  • prevalence of HIV-related impairments, activity limitations and participation restrictions
  • the role of rehabilitation in improved health
  • HIV vaccines and microbicides
  • population-specific treatment needs (e.g., women, older people)

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Footnotes

88
See E Wood et al., supra, note 10

89
Canadian AIDS Treatment Information Exchange. Anti-HIV Agents: Teaching Adherence to Substance Users. Treatment Update 127. May 23, 2002; Canadian HIV Legal Network. Injection Drug Use and HIV/AIDS. Legal and Ethical Issues, 1999.

90
Palepu A, Tyndall MW, Li K, Yip B, Hogg RS, O'Shaughnessy MV, Montaner J, Schechter M. Access and sustainability of antiretroviral therapy among injection drug users in Vancouver. Canadian Journal of Infectious Diseases 2001; Suppl B:32B; Altice FL, Mostashari F, Friedland GH. Trust and acceptance of and adherence to antiretroviral therapy. Journal of Acquired Immune Deficiency Syndromes 2001; 28(1): 47-58; Kerr T, Marshall A, Walsh J, Palepu A, Tyndall MW, Hogg RS, Montaner J, Wood E. Determinants of highly active antiretroviral discontinuation among injection drug users. Canadian Journal of Infectious Diseases 2004; 15 (Suppl A): 86A (abstract 458P).

91
Commission on the Future of Health Care in Canada. Building on Values; The Future of Health Care in Canada. Health Canada. 2002.

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