Microsoft word - equityfinal.doc
This is the first in a series of concept papers commissioned by the International Trachoma
Initiative (ITI) to bridge the mission and programmatic work of ITI with the current discussions in other fields related to health and development issues in poor countries. The general aim of the concept papers is to assist ITI to clarify and articulate the success of its current programs to eliminate blindness and visual loss due to trachoma as well as help guide the future expansion of its programs and partnerships. This attempt to assist in clarifying and articulating the efforts of ITI is directed towards creating an understanding of where other approaches and disciplines which share the same general goal of improving the quality of life of people in poor in countries are aligned with ITI’s procedures and outcomes and where they do not. The first paper discusses how various conceptions of equity and health equity underlie ITI’s current programs and the possible implications for future programs. The second paper is on gender; specifically, the paper surveys the current knowledge of the determinants, levels, consequences and responses to trachoma among girls and women. International Trachoma Initiative
ITI was founded in 1998 by the Edna McConnell Clark Foundation and Pfizer, Inc. with
the singular mission of advancing and eventually reaching the goal of globally eliminating blindness and visual loss due to trachoma. ITI aims to realize its mission through three components: country programs, research, and advocacy. The majority of ITI's time and resources are directed towards the country programs where ITI engages to various degrees with countries that have a high prevalence of trachoma. To choose the "core countries" where ITI will have the most direct involvement by initiating and directly managing trachoma treatment and prevention programs, ITI uses a particular decision-tree process. Of the forty-seven countries identified as having a high prevalence of trachoma, a smaller universe of countries have been identified as being high priority for control programs by the World Health Organization. Of these sixteen "high priority" countries, ITI determines its level of engagement in each country according to a number of criteria that assess the viability of initiating and sustaining programs. ITI currently works directly in seven high priority countries and supports efforts indirectly through other agencies in Sudan. ITI also directly manages programs in Morocco though it is not high priority country because trachoma in that country is understood to be very near elimination. SAFE Strategy
ITI’s guiding framework for "core country" programs is the SAFE strategy propounded by
the World Health Organization and the Alliance for the Global Elimination of Blinding Trachoma by 2020 (GET 2020). Surgery, Antibiotics, Face Washing, and Environmental Improvement (SAFE) are the four pillars embedded in all of ITI's efforts from local village-based programs all the way to national policy mandates. However, the unique strength and success of ITI is its access to and the ability to distribute resources to increase the number of eye-lid surgeries and provide azithromycin/Zithromax, a highly effective antibiotic donated by Pfizer. Indeed, surgeries and effective antibiotics, the “S” and “A” are the most immediate way to clear infections and protect eyesight among individuals and communities burdened by trachoma. Face
washing and environmental improvement, the “F” and “E,” can be understood as the preventative components of the SAFE strategy which require addressing the causes of infections including individual behavior, endemic poverty and poor public infrastructure. Programming each component of the SAFE strategy is continually faced with significant barriers, but nevertheless, the efforts to overcome such barriers have resulted in meaningful numbers of individuals being treated for trachoma and having their eyesight protected.
The SAFE strategy is fundamentally built on the current state of scientific knowledge of
the epidemiology of trachoma. The strategy identifies medical interventions to mitigate progression of the disease and as well as non-medical interventions to address the immediate and distal factors of future transmissions. The success of the SAFE strategy and the work of ITI in increasing the number of trachoma infections treated and surgeries performed is due to solid epidemiological information as well as the availability of immediately effective resources. Nevertheless, in the face of the overwhelming number of trachoma cases, currently estimated to be 146 million cases, and a myriad of constraints, financial and material resources are limited and must be allocated according to some defined set of guidelines. Thus ITI as an organization is confronted by difficult choices. How can ITI appropriately make and justify the decisions regarding the allocation of resources that will ultimately alleviate the suffering from trachoma for a particular set of individuals and not others? Equity
Questions of equity—that is, questions relating to ideas of fairness, equality, justice—
arise most immediately whenever limited material resources are being distributed. How valued and finite resources are distributed among people can be understood as determining “distributive justice.” This determination if done rigorously is informed by a broader understanding of how benefits and burdens should be distributed among people based on a valid conception of social justice or the right way society should be organized and function. Often, discussions of equity in relation to health issues center on determining the most correct way to distribute health care services (equity in health care). Because health care commodities and services are valuable and valued for their importance in protecting and promoting the health of individuals, the discussions aim to clarify why and to what extent individuals must have (access to) those things irrespective of factors such as income, gender, geography, et cetera.
Recently, these discussions have broadened beyond the focus on the distribution of health
care. Greater attention is being paid to the variations in the causes of morbidity and mortality, the variations in consequences of disease and disability as well as the variations in people’s health status and outcomes of health interventions. The broadening of the discussion emanates from the recognition that it is too simplistic a leap from valuing being healthy to determining how to correctly distribute health care commodities and services. Because a person’s health is determined by many factors aside from access to health care and that there are a myriad of conceptions of what constitutes good health status or outcomes, there is a need to broaden the focus to “upstream” factors affecting people’s opportunities of being healthy.
At the same time, in the face of growing inequalities in health status of people within
countries and among countries, there is a sense of urgency to clarify and articulate more stringently the moral, political or economic necessity to stop the widening health gaps. Furthermore, recent research shows that a greater level of inequality in health status between groups in a population is correlated with a lower overall health status of the entire population. Thus, the broader discussion on “health equity” seeks to identify how various conceptions of fairness, equality, justice, freedom, et cetera affect our evaluation of the forms of and variations in the determinants, levels, and consequences of morbidity and mortality among individuals and groups.1 ITI and Distributional Equity
"Who gets what" and consequently when and how are four components of deciding the
distribution of limited resources. ITI faces such questions continuously as it possesses valued resources, namely financial resources and Zithromax, which it is mandated to distribute. These resources are allocated to particular countries, and particular institutions within those countries, which then are directed to particular districts and villages, that will then result in clearing infections and surgeries that prevent blindness of particular individuals. Indeed, ITI staff have a high level of personal interactions in core-countries with national level policy makers all the way to providers of services at the village level. This first-hand interaction makes the ultimate choice of which particular individual will and which individual will not benefit from ITI's resources a very immediate, practical, and personal decision. Witnessing first hand the physical suffering and mental anguish of individuals due to trachoma and consequent blindness often compels additional efforts to overcome obstacles in establishing a program in the country. However, it may also precipitate a sense of moral failure where programs cannot be established. Thus, who gets what when and how must be profoundly informed by the "why" or justification for who will benefit and who will not. A clear and valid justification for how the resources are allocated may alleviate the sense of moral failing for the staff, but it is also required for a more important reason discussed below.
In other development fields where a framework of improving economic or social equity is
the starting point, programs are directed towards satisfying basic needs, alleviating suffering of individuals, empowering people, et cetera.2 For example, food is provided to the hungry, social services are subsidized for the poor, small business loans are given to women, et cetera. In distributing limited resources, an understanding of equity as making particular aspects of people more equal may lead to identifying individuals and groups with the greatest need for that particular thing, e.g. food, money, power, et cetera. Similarly, the prima facie justification for
1 Norman Daniels, Bruce Kennedy, Ichiro Kawachi. “Why Justice Is Good For Our Health: The Social Determinants of Health Inequalities.” Daedalus, Volume 128 Number 4 (Fall 1999). Pages 215-252.Norman Daniels, Bruce Kennedy, Ichiro Kawachi. “Justice is Good For Our Health.” Boston Review, Volume 25 Number 1, February/March 2000. Also found at http://bostonreview.mit.edu/BR25.1/daniels.html Visited on March 10, 2002; Evans, Tim, et al eds. Challenging Inequities in Health: From Ethics to Action. New York: Oxford University Press. 2002.; Peter, Fabienne. “Health Equity and Social Justice.” Journal of Applied Philosophy. Vol 18: No. 2. p 159-170. 2 Department for International Development. Making Globalization Work for the Poor. White Paper on International Development and Eliminating World Poverty. A Challenge for the 21st Century. http://220.127.116.11/DFIDstage/PolicieAndPriorities/files/whitepapers_main.htm Visited on March 10, 2002.
ITI's distributive decisions--where it chooses to establish programs--could be that where there is the greatest need that is where ITI's resources are being allocated. Indeed, ITI's universe of countries among which it chooses to have the most direct engagement are all highly endemic or "high-priority" countries. By mitigating the disease progression and concomitant suffering, the health status of those infected is being made more equal to those without the illness. Preventing infections may make things more equal in many other aspects of an individual’s life aside from health status. For example, the protection of eyesight may allow people to continue to work and earn thus ITI is at least preventing greater economic inequality.
Recognizing the physical and mental anguish and negative consequences of blindness for
an individual with trachoma drives us to initiate and sustain effective control programs to eliminate trachoma. Such efforts however, may not reach every individual or even the most needy individuals or groups with trachoma. Other approaches that place an emphasis on lessening various forms of inequality among people may be motivated to distributing trachoma treatment and prevention resources to certain affected individuals or groups of people irrespective of their impact on the aggregate number of infections averted. In comparison, ITI aims to direct resources to areas with the largest concentration of people affected by trachoma. Such an “area of greatest need” justification is greatly supported by an epidemiological framework to control infectious diseases where areas of high endemicity are identified and treated.
However, ITI does not at present and may not in the future engage directly with all high-
priority countries. The countries where ITI programs operate are chosen according to a number of criteria including the existing and future capacity for trachoma control. It could be argued however, that in a country that does not possess the infrastructure or capacity for trachoma control is precisely where there is the greatest need. Thus, a stringent equity based starting point or framework would compel resources to be directed to areas where ITI believes that programs are least feasible. One defense against the possible criticism that individuals and populations that are worst affected are not being helped could be that ITI seeks to meet both the requirements of the epidemiological model and equity considerations but it is a young organization that seeks to increase its scale. In order to satisfy the demands of both of these frameworks, ITI has had to begin somewhere and will expand country by country and within a country, district by district.
Despite this defense, what becomes clear in formulating a response to approaches that are
primarily motivated to increase equity in various spheres is that an (infectious) disease control program guides resources to the where it is most effective in controlling the aggregate number of disease cases. Such a disease control program however, is unable to internally justify why every individual or the worst affected individual or groups may not benefit from the resources distributed through a disease control program. In the face of alternative understandings of equity and their consequent decision making rules, purely following the epidemiological model of disease control, using a case by case method of allocative decisions or operating on an ambiguous definition of equity leaves ITI as an organization vulnerable to criticism and creates possible hindrances to partnerships. This may especially be the case where the programmatic work of ITI or area of concern overlaps with the efforts of other organizations. There may be a danger that a singular focus on containing and controlling the aggregate number of trachoma
infections may lose sight of why eliminating trachoma became a goal in the first place.
Public health practitioners are used to guiding efforts by a principle of the "greatest good
for the greatest number." The epidemiological model for infectious diseases suggests that we allocate resources to the most endemic areas and create appropriate interventions to neutralize the predominant modes of transmission in order to control the spread of disease. That is, given the choice of allocating finite resources between two locations, resources should be directed to the location where more cases of disease will be treated and averted. Furthermore, in deciding the allocation of resources among two or more diseases, the principle would suggest that resources should be directed to the disease intervention program(s) that will result in the most number of infections averted. Of course, the reality that not all diseases are equally detrimental has resulted in ever more precise and standardized measurements of the outcomes of interventions such as QALYs, DALYs, et cetera. Indeed, when coupled with cost-effective analysis, such a principle would guide resources to the most economically efficient interventions that will result in the greatest number of QALYs or DALYs units saved per monetary unit.
Whether deciding to allocate resources to the areas where interventions will be most
effective in averting cases of a particular disease or allocating resources to the diseases that will produce the largest outcome units, the "greatest good" model implicitly or explicitly makes a clear distinction between containing and controlling the aggregate number of disease cases versus assisting each individual affected by disease. Such efforts clearly prioritize aggregate goals over addressing the needs of each individual. Recognizing this distinction is important for all public health practitioners and particularly for ITI. When implementing public health programs based on the “greatest good” principle, a belief in the principle of human equality obliges us to offer an explanation to those who do not benefit. If two individuals have trachoma but one does not benefit because she lives in a district where no program will exist, then there has to be an explanation given to her for why district borders are a valid distinction to be made between who will benefit and who will not. Often, if resources are being distributed out of beneficence or charity, it is believed that there is no need to offer an explanation to those who do not benefit as no one has claims on those resources aside from the benefactor.
The ongoing success of ITI in eliminating trachoma is valuable and admirable for
improving the health status for those affected by trachoma; for making things more equal in multiple areas between those with the disease and those without the disease. Further research could be done to identify the multiple equity enhancing benefits. ITI however, faces two areas where equity considerations need to be further examined. First, there may be a disconnect between the goal of controlling the aggregate number of trachoma infections and a stringent requirement to assist every person or the worst affected individuals and groups. Performing eyelid surgeries and distributing Zithromax in locations where the aggregate number of trachoma infections will be most decreased may affirm the effectiveness of the epidemiological model. Perhaps, the programs may also exhibit great economic efficiency in transforming resources into
successful interventions. However, the primary concern with decreasing the aggregate number of trachoma infections may not be aligned with broader and rigorous conceptions of distributional equity. If ITI considers itself to be motivated by values aside from beneficence, then there must be a sufficient explanation offered to the people suffering from trachoma who are not benefiting from the core country programs.
Incorporating the recent discussions on health equity would compel identifying and
addressing the more “upstream” factors that determine vulnerability to trachoma infection. Greater effort has to be made to identify and address the non-medical factors, the “F” (face washing) and “E” (environment) of the SAFE strategy and much beyond. Indeed, broadening the focus to making the opportunity of individuals to be healthy more equal may lead to completely non medical interventions such as literacy improvement, housing and land rights advocacy or improvement in public transportation. In comparison to purely focusing on health status of individuals or maximizing the number of cases averted through epidemiological model, a robust understanding of health equity makes us consider implementing a range of medical and non-medical interventions that mitigate the determinants, levels, and consequences of disease and disability in individuals and groups.
Measuring the level of effectiveness (i.e. number of disease cases averted) and economic
efficiency (disease cases averted/units saved per monetary unit) evaluate how best to achieve the goal of lessening the aggregate number of cases of disease given limited resources. A public health program based on these two criteria takes it as given that reducing the overall number of cases is the only and final goal. However, we do not seek to eliminate a disease such as trachoma simply for the cause of elimination. Before we determine how to evaluate a public health program and even before we initiate the program, we first identify why eliminating a disease is a worthwhile goal. Some "moral values" are affronted from our evaluation of inequalities in health status as well as
in the variations in determinants and consequences. Identifying what these values are may illuminate how stringent the requirement is to assist every individual affected by trachoma and how far reaching interventions have to be in order to protect the opportunities for people to be healthy.
FITTING TRANSITION MODELS TO LONGITUDINAL ORDINAL RESPONSE DATA USING AVAILABLE SOFTWARE Department of Statistics, Shahid Beheshti University, Iran In many areas of medical and social research, there has been an increasing use of repeated ordinal categorical response data in longitudinal studies. Many methods are available to analyze complete and incomplete longitudinal ordinal response
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