HIV/ AIDS and Health Determinants: Lessons for Coordinating Policy and Action

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A Discussion Paper for the Ministerial Council on AIDS

4. Conclusions: Making Sense and Making Progress

The literature presents compelling evidence of the relationship between the social determinants of health and HIV/ AIDS. It does so in spite of the significant methodological challenges inherent in such work. Researchers, for example, often have not been able to construct the control or comparison groups that would solidify their findings. Often they have not had the funding necessary for following participants through an extended period of time. Often the threat posed by the epidemic has obliged researchers to focus their attention on practical short-term prevention and treatment issues rather than on the broader and longer-term implications of their findings.

These challenges and the questions that remain unanswered should not be used as a rationale for dismissing the literature s underlying themes and conclusions, particularly since these are consistent both with the literature in other policy realms and with common sense itself. Governments and policy makers need to be aware that in many fields there are no unequivocal answers. 135

The following integrates the findings from the previous sections and endeavours to assess the body of literature that places HIV/ AIDS in a population health context. It is followed by a consideration of the most appropriate strategy for building a population health approach to the HIV/ AIDS epidemic.

4.1 Making Sense

The research strongly suggests that the social determinants of health influence a persons risk of HIV infection, the speed with which HIV infection will progress to AIDS and a persons ability to manage and live with HIV/ AIDS. 136

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The microbe is nothing, the terrain is everything. Louis Pasteur

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These determinants include emotional, physical and sexual abuse during childhood as well as inequities based on income, race and gender. Importantly, racism and discrimination not race, culture or gender themselves leave groups of people particularly vulnerable to HIV infection by excluding them from the social and economic mainstream and by denying them the social supports needed to enhance and preserve life. These inequities are compounded by a health care system that periodically insists upon compliance. The system is not always willing to adjust to the cultural and social needs of its patients. This reticence creates barriers that compromise access and, for some people, the Canadian commitment to universal access is more a principle than a reality.

135 MacIntyre, 2001: 224.
136 House of Commons Standing Committee on Health, 1996: 8/ 32. 46

These social inequities and health determinants act at the level of the individual, for example, when child abuse and adult homelessness increase the likelihood of a person engaging in high-risk behaviours. They act also at the societal level, for example when economic inequalities between men and women affect the latter s ability to negotiate safe sex practices or when short-term life necessities the need for food and shelter, and even the need for drugs make one s long-term health prospects an academic concern. Economic survival in the short term will invariably be a more pressing necessity than good health in the long term.

It is no coincidence that Canada s metropolitan centres are struggling to manage the HIV/ AIDS epidemic and its spread. Here poverty, homelessness and social isolation are increasing in intensity and are leaving people at risk of infection.

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AIDS is a disease that holds a magnifying glass to some of America's ugliest social problems such as homophobia, drug use, poverty and racism. AIDS Weekly Plus, Conference Coverage, 1996.

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Among the determinants, poverty and income inequity are certainly at the very core of the relationship between HIV/ AIDS and population health. Angus Deaton, writing for the National Bureau of Economic Research in the United States, emphasizes that equal societies have more social cohesion, more solidarity, and less stress; they offer their citizens more social support and more social capital; and they satisfy humans evolved preference for fairness. Equal societies are healthier. 137

Abuse, violence and early childhood experiences are also at the core of this relationship. Importantly, however, the population health literature indicates how the many different determinants are so fully interwoven.

• those living in poverty are very often those who are visible minorities or Aboriginal, and those who have a limited education;
  
• those with a limited education are very often those who endured abuse as children or who grew up in emotionally impoverished households;
  
• those who were emotionally or economically impoverished as children are very often those with limited job security and no control over their working conditions, or those who are homeless and at high risk of infection, or those who are searching for companionship and security through sharing needles and taking sex at any risk; and

137 Deaton, 2001: 1. 47

• those who are poor, or homeless, or injection drug users, or mentally ill or discriminated against are very often those whose access to the health care system is most limited regardless of their heightened need.

Groundbreaking Canadian studies dating from the early 1980s the Vancouver Lymphadenopathy AIDS Study for example or the more recent Vanguard and Point projects and the high infection rates among people who are homeless and have serious mental illnesses speak to this interconnectedness. 138

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The most powerful determinant ... is not race or gender or sexual orientation. It is class. In that respect, there are just two AIDS epidemics: the one among people who, by virtue of their education and income, lead stable lives and the one among people who do not. Stolberg, 2001

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4.2 Making Progress on Population Health

The literature frequently offers recommendations for influencing individual and community behaviour. Distributing condoms and clean needles, and encouraging less risky sexual behaviour all figure prominently as do special efforts targeted to specific at-risk groups, for example prisoners, homeless youth and those who inject drugs. Behavioural change and targeted efforts are vitally important for managing the epidemic. Indeed more such efforts are required if Canada is to prevent the spread of AIDS and provide appropriate treatment and care to those living with HIV/ AIDS.

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... logic would suggest that it takes more than information, leaflets and condoms to combat the forces in a person's life that might make them likely to engage in risky sexual behaviour. What is required is action that acknowledges the many and varied influences on an individual, including childhood experiences, employment, immigration and partnership rights. Worrall, 2001: 1

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However, leaving prevention to behavioural change to condoms reinforces the notion that HIV transmission is narrowly the result of personal shortcomings and group dynamics. As the tobacco industry knows so well, people do not change their behaviour on the basis of an intellectual awareness that they are putting themselves at risk. This is particularly true for those most vulnerable to HIV infection. Such efforts, while essential in the short term, are not the answer for the long term.

 

138 See Strathdee, Social determinants related , 1997: 2; see also Goldfinger, n. d. : 3. 48

Similarly Canadians will not prevent the spread of HIV/ AIDS by committing more resources to the health care system alone. The United States, for example, spends more on health care than any other nation yet has an adult HIV rate many times that of other industrialized nations. 139 Indeed relying too heavily on the health care system to address HIV/ AIDS and other health problems could diminish population health by consuming resources that could otherwise be committed to those efforts that will make a lasting difference.

Canada needs a better approach to HIV/ AIDS and to health. In this regard, policy makers must recognize that behaviour change is less a process of individuals deciding to change than a process of communities changing their standards of behaviour and values. 140

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The effects of the usual do's and don'ts that we all preach pale in comparison with the effect of society's structural factors on population health. Bezruchka, 2001: 1701

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Governments and policy makers need to build fences at the top of the cliff providing income and personal security, stability, self-esteem and social support if they want to dramatically reduce the need for ambulances at the bottom.

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Consciousness does not automatically lead to commitment. Landsberg, 2001: A2

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It is not clear why Canada and other countries have not built more fences. Given the research and the advice of those undertaking the research, given the experience of those living with HIV/ AIDS, and given the intuitive logic of the population health approach, it is perplexing that so much evidence apparently generate [ s ] so little action . 141 Perhaps governments and society have been reticent to act in this vein because:

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"... poverty as a root cause of ill health is both evident and paralysing to further thought or action. Mann, 1996

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139 Spigelman, Taking Stock, 2001a: 22. See also Auerbach, 2001: 1.
140 Carr, 1991: 12/ 13.
141 McInnis, 2001: 391. 49

• the results of preventive social programming are inherently invisible since their success is measured by the absence of problems and since their outcomes are separated in time from the effort;
• the rescue is much more dramatic than prevention, and prevention often requires an investment based as much on faith and conviction as on documented evidence; and
• prevention must address multiple causes whereas medical care focuses only on the visible manifestation of a disease or injury.

Furthermore society appears to place a premium on the technological fix anewvaccineor a new MRI. These are more tangible than low-profile efforts that distribute wealth more equitably or that ensure children are physically and emotionally well nourished.

Leadership and a Social Justice Agenda

First and foremost, building fences rather than buying ambulances requires strong, committed, non-partisan leadership at the highest levels in the community and in governments across the country. This leadership must embed the population health concept within their vision of Canada. And, most importantly, their vision has to incorporate a social justice agenda encompassing efforts:

• to reduce the income and other inequalities evident in Canada. This may well require reversing the trend of the past decade through adjustments within the tax system and by improving the employment potential of all Canadians. It may require new employment initiatives, higher minimum wage rates, improved income security programs and enhanced access to health care.
  
• to invest in the country s children and youth by preventing violence and abuse and by ensuring gender equity. It may require expansion of the National Child Benefit as well as early childhood education initiatives, new Head Start programs in low-income neighbourhoods, special efforts to retain youth in the school system and to prevent illiteracy, and an increased public commitment to social housing.
  
• to ensure that discrimination is not a factor in Canadian society, and that those who are socially isolated and living on the margin because of mental or other illnesses, disability, sexual orientation, race, culture or gender are able to participate fully in the mainstream of Canadian economic and social life.
  

 

In essence, the social justice vision and agenda has to strengthen Canadian communities by building social cohesion.

Social goals such as these can be practical objectives if commitment and leadership are present. The challenge of enlisting leaders to champion the effort and of building the commitment necessary is formidable and daunting. It is important to recognize, however, that [ d ] isparities in health between social groups are not inevitable it is possible to challenge health inequities with purposeful public policy. And such a challenge is long overdue. We need not and must not tolerate such inequities. 142

142 Evans, 2001: 15. 50

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Society creates these social determinants and has both an opportunity and a responsibility to change them. Canada, House of Commons, 1996: 8/ 32

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It is also important to recognize that some decades ago, seniors and senior women in particular were among the poorest in Canada. Political leadership and commitment, community support and sustained effort have ensured they no longer inhabit that bottom rung of the economic ladder. Fundamental social change is possible when there is leadership, commitment and community consensus.

Importantly a social justice agenda would address the full range of social problems including the HIV/ AIDS epidemic that are so painfully evident today. And it would do so in a manner that the health care system alone cannot. This agenda would also give Canadians the tools they require to address new challenges as they emerge in the future.

Progress toward this social justice agenda, toward a population health model and toward a more lasting strategy for addressing the HIV/ AIDS epidemic will require what Trussler and Marchand refer to as Action Steps. 143 Cooperation and coordination, research and education, and applying the lessons of population health must all be among these action steps.

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Knowing is not enough; we must apply. Willing is not enough; we must do. Goethe

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Co-operation and coordination across agencies and jurisdictions

There currently exists a strong foundation for cooperation and coordination across agencies and jurisdictions. The Canadian Strategy on HIV/ AIDS brings together federal departments as diverse as Health Canada, Correctional Service Canada, the Canadian International Development Agency and the Department of Justice. There is a national Ministerial Council on HIV/ AIDS and a Federal/ Provincial Territorial Advisory Committee on HIV/ AIDS. Some provinces have their own interdepartmental committees and there is the social union framework and the many other federal/ provincial/ territorial forums at the political and bureaucratic levels.

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Partnerships must be built across levels [sic] of government and between institutions, departments and sectors if resources for health are to be unlocked." Zollner, 1998: 8

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143 Trussler and Marchand, 1997. 51

These can be used to broaden the understanding of population health and to build a consensus around the need for a social justice agenda that incorporates the population health model.

In building this commitment and consensus, it will be important for Health Canada, its provincial and territorial counterparts, and the various HIV/ AIDS-related committees to build partnerships with other agencies that already understand population health, for example with every governments human resource development, education, housing and Aboriginal affairs departments. It will be equally important, however, to reach out to those departments and non-governmental agencies that are not consistently involved in developing social policy, for example the Departments of Finance and Treasury Boards in each jurisdiction and lobby groups such as the Business Council on National Issues. Progress toward a social justice agenda will require that they too understand the issues.

Given the importance of leadership in this endeavour, these efforts should be directed initially at Ministers, Deputy Ministers and senior staff in the hope that their understanding and commitment will then permeate their respective organizations.

Research and Education

Building leadership, commitment and a public consensus will require efforts that place epidemiology more clearly into a population health and social justice context. Research is needed to associate the social determinants with longer-term health outcomes. Research is needed to identify opportunities for promoting population health within the different public policy sectors that can contribute to the social justice agenda. Research is needed to articulate the potential cost savings and public health benefits associated with a social justice agenda. And this research has to have sufficient resources to build appropriate comparison groups and to follow people through an extended period of time. In this regard, governments current efforts to report on the social indicators associated with population health are an important beginning. Similarly there may be potential for further incorporating social justice and population health issues in the National Longitudinal Survey of Children.

Efforts are also required to help Canadian communities understand how population health can be transformed from a theoretical model into a practical reality. A best practices inventory of community initiatives that have incorporated this perspective into their daily activities may be a good beginning.

There would be value also in reaching out to those governments and commissions currently endeavouring to analyze or reform the Canadian health care system. Such efforts would provide the population health model with a broad public forum and HIV/ AIDS can be a vehicle for encouraging people to expand their vision. Indeed the current commitment to universal and public health care can be sustained only if the Canadian vision is broadened in this way.

Furthermore, Health Canada, the Canadian Strategy on HIV/ AIDS and the Canadian Institutes for Health Research could provide support to researchers and research entities such as the BC Centre for Excellence to enhance their ability to share their knowledge with a broader and more general audience. Importantly, these audiences are interested less in control groups and regression analysis than in what population health means for them and their community. These researchers need to communicate their findings and conclusions in ways that are compelling and effective, and through vehicles other than technical and medical journals. Much of the population health and epidemiological evidence available today is not available to the communities from which support is required for pursuing a population health model.

 

Applying Population Health Lessons to HIV/ AIDS

The effort to manage the HIV/ AIDS epidemic cannot stand still while building community understanding of and support for a population health model, and while enlisting leaders and champions for a social justice agenda. It is important, therefore, to move certain HIV/ AIDS-related activities in directions that reflect the current understanding of population health. These more narrowly focused efforts could include, for example, measures:

• to expand the commitment to addressing in a holistic way the needs of people vulnerable to HIV infection or living with HIV/ AIDS, by engaging leaders from other policy sectors in the work of the Federal/ Provincial/ Territorial Advisory Committee on AIDS.
  
• to explore with Statistics Canada the potential for further incorporating issues relating to HIV/ AIDS and population health in the National Longitudinal Survey of Children.
  
• to use the opportunity presented when testing pregnant women for HIV to offer interventions addressing the underlying factors that have placed them at risk of HIV infection.
  
• to provide training to staff in shelters for the homeless so they are prepared to address the relationship between HIV/ AIDS and homelessness, and the HIV risks associated with homelessness especially among youth and those with mental health issues.
  
• to provide training to those working with people with mental illnesses, in recognition of their particular vulnerability to HIV infection.
  
• to integrate sexual abuse counselling with HIV prevention efforts and to link the Canadian Strategy on HIV/ AIDS with the Social Union, the National Children s Strategy and other early childhood development efforts.
  
• to expand the harm minimization programs currently in place, particularly in relation to those injecting drugs, and to address addictions in a social and health context rather than as a criminal justice issue.
  
• to build a range of supports for the children of parents living with HIV/ AIDS so as to ensure that their life chances are not compromised.
  
• to develop protocols to assist hospitals and health professionals meet the particular needs of marginalized groups and to provide care and support to people living with HIV/ AIDS in ways that are sensitive to their individual and cultural requirements.
  
• to re-orient thinking and reporting so as to focus on racism and discrimination rather than race and those groups who are particularly vulnerable to HIV infection.

Governments and researchers often know more about what needs to be done than about howtodoit. 144 The first action step toward what needs to be done may well be for Health Canada, the Ministerial Council on HIV/ AIDS and the Federal/ Provincial/ Territorial Advisory Committee on AIDS to cooperatively develop a strategic plan for progressing in each of the directions outlined above. The Health Canada Direction-Setting Meeting scheduled for April 2002 would be an appropriate forum for discussing this plan and for enlisting the support of HIV/ AIDS-related organizations working at both the national and community levels. This Meeting could certainly advise on priorities and on building the strategic partnerships that are vital to a population health model for HIV/ AIDS.

Given the nature, threat and impact of HIV/ AIDS, there are no practical alternatives to the population health model and a social justice agenda. Governments and society need to regard the HIV/ AIDS epidemic not as a health issue alone and certainly not as a moral issue but as a legal issue, a human rights issue and an equity issue. A nation s health must be treated as a barometer of its commitment to social justice and human rights. Common sense, practical experience and a wealth of research from around the world indicate that societies are investing wisely when they endeavour to build a population health fence at the top of the cliff.

Doing so will require leadership, commitment and sustained effort to build social cohesion by addressing poverty, unemployment, illiteracy, inadequate housing, social isolation, violence, abuse and discrimination. Without efforts to fundamentally improve community health and well being, Canadians will continue to struggle with the manifestations rather than the root causes of the HIV/ AIDS epidemic. And the severity of the epidemic will continue to surpass even the most pessimistic predictions. 145

144 99, UNAIDS, Gender and HIV/ AIDS, 1999: 4
145 Piot, 2001. 54

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