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Women Prisoners and Diabetes in the US: Incorporating Human Rights Paradigms to Advocate for Health Provision Reform in Correctional Settings Kelsey Wright, Johns Hopkins Bloomberg School of Public Health, MD, USA Abstract: One of the primary functions of the incorporation of human rights paradigms into the field of public health is to advance the provision of care for underserved populations who may suffer from stigma, socioeconomic disadvantages, or other factors that contribute to health disparities. Incarcerates in United States prisons or jails are a severely underserviced population—provision of healthcare for inmates rarely meets international human rights standards, especially in regards to female prisoners who constitute a minority of incarcerates with unique and unmet health needs. Lack of adequate healthcare in the US penitentiary system may be due to the fact that federal and state prisons are ubiquitously under-funded and that they house a population which is stigmatized for its criminal status (Lewis, 2006). The National Commission on Correctional Health Care has set quality standards in correctional facilities, but inmates in these facilities are generally excluded from community efforts to improve health outcomes, are excluded from nationally based health surveys, and frequently parti- cipate in below standard healthcare systems. All of these factors prevent people in correctional facil- ities from experiencing the benefits of scientific knowledge and from participating as healthy members of societies upon exit from institutions (Binswanger, 2009). Keywords: Human Rights, Prison Health, Women’s Health, Diabetes, Chronic Disease Advocacy, Incarceration Health, Women Prisoners Introduction O NE OF THE primary functions of the incorporation of human rights paradigms into the field of public health is to advance the provision of care for underserved populations who may suffer from stigma, socioeconomic disadvantages, or other factors that contribute to health disparities. Incarcerates in United States prisons or jails are a severely underserviced population—provision of healthcare for inmates rarely meets international human rights standards (See Figure 1). This is especially true in relation to female prisoners, who constitute a minority of incarcerates with unique and unmet health needs. Lack of adequate healthcare in the United States penitentiary system is due to ubiquit- ous and constant under-funding of federal and state prisons and may additionally be attributed to these prisons housing populations who are stigmatized for their criminal status (Lewis, 2006). The National Commission on Correctional Health Care (NCCHC) has set quality standards in correctional facilities, but inmates in these facilities are generally excluded from community efforts to improve health outcomes and from nationally based health surveys, and are enmeshed in healthcare systems which function below the NCCHC quality standards. All of these factors prevent people in correctional facilities from experiencing the benefits The International Journal of Health, Wellness and Society Volume 1, Issue 3, 2011, http://HealthandSocietyJournal.com/, ISSN 2156-8960 © Common Ground, Kelsey Wright, All Rights Reserved, Permissions: [email protected] of scientific knowledge and the highest standard of health possible—rights afforded them via international human rights instruments—and from participating as healthy members of society upon exit from incarceral institutions (Binswanger, Krueger, & Steiner, 2009). This paper will use the example of chronic diabetes care provision for a particularly stigmatized incarcerated group—women—to examine how human rights paradigms can be used to ad- vocate for better and more equitable health services for any vulnerable population. Human Rights and Health Human rights are the rights described in the nine core human rights treaties emerging from the 1948 Universal Declaration of Human Rights. The human right to health is articulated, implicitly and explicitly, in a multitude of these human rights treaties, but the most useful definition of the right to health for advocacy purposes occurs in General Comment 14 to Article 12 (the right of everyone to enjoy the highest attainable standard of physical and mental health) of the International Covenant on Economic, Social, and Cultural Rights (ICESCR) which outlines the “3AQ” model of the right to health (United Nations, 2009; United Nations Economic and Social Council [ECOSOC], 11 August 2000). The 3AQ model ensures Availability, Accessibility (Physical, Informational, Economic, and Non- 72 THE INTERNATIONAL JOURNAL OF HEALTH, WELLNESS AND SOCIETY discrimination), Acceptability, and Quality of prevention, treatment, and control of disease, and the creation of conditions which would assure access to medical services in the event of illness (United Nations, 2009; United Nations Economic and Social Council [ECOSOC], 11 August 2000). Availability includes appropriate quantity of facilities, personnel, and es- sential medicines and programs that address the “underlying determinants of health” (Gruskin & Tarantola, 2008). Accessibility encompasses four domains: accessibility of services and programs whicha re non-discriminatory in nature, physical accessibility, affordability, and access to information (Gruskin & Tarantola, 2008). The final “A” in the 3AQ model, Accept- ability, ensures that services and personnel follow ethical guidelines and are culturally sensitive to patients needs. Finally, the quality part of the 3AQ model describes a basic minimum quality standard for medical personnel, services, programs, scientific endeavors, etc. Many states are party to international human rights instruments, but international and national laws protecting gender equity in prisons and in healthcare are rarely and inadequately enforced, even though their violation is a breach of codified international law (Cook, 1993). These “gold standards” of human rights in healthcare provision—accessibility, account- ability, acceptability, and quality—are seldom visible in the context of incarceration in the United States, especially within the female minority. A WHO statement on imprisoned women reprimanded female penitentiary systems, stating that “minority status [of female prisoners] does not justify the widespread ignorance on women’s basic rights and the considerable gender insensitivity still dominating criminal justice systems” (Van den Bergh, Gatherer, & Moller, 2009). Prisons and jails represent an exceptionally difficult system to access for both research and advocacy purposes and are absent from public scrutiny—a legacy of the history of punitive care in the United States. Female inmates are the subjects of institutional violence which relegates them to an inferior position to men both because of the pre-conditions to their entry to institutional facilities and because the facilities themselves have been modeled after male needs (Van den Bergh, Gatherer, & Moller, 2009). The focus of research and treatment among female inmates is also problematic in this context, as the illnesses that are commonly addressed have a distinct undertone of gender bias to them and ignore female incarcerates rights to preventative care and treatment of chronic disease. The social status of female inmates—generally disadvantaged socioeconomically and educationally—precludes their agency in their own healthcare, and precipitates contexts of inequality in access and care, which violates internationally held precepts of non-discrimination and other human rights. Female gender is a universal risk factor for increased burdensof illness which may result from cultural, socioeconomic, or medical contexts that devalue the unique contexts of women’s health (Cook, 1993). This “gender” risk factor is especially salient to women who engender multiple disadvantaged identities, such as many of the women currently in the United States correctional system. Incarcerative Culture in the United States The United States now incarcerates more people per capita (750/100,000) than any other nation (See Table 1) and the burden of this incarceration is disproportionately felt by vulner- able populations, including racial and ethnic minorities, and people of low socioeconomic and educational status (See Figure 2) (Wilper et al, 2009; Prison Policy Initiative, 2005). Despite a steady decrease in crime rates since the 1990’s, the rate of incarceration within the United States continues to increase, with the rate of women entering correctional facilities 73 KELSEY WRIGHT increasing at a rate almost double that of men in the last decade (US Bureau of Justice Stat- istics, 2009). This unprecedented increase in the rate of female imprisonment has been widely attributed to the initiation of the American war on drugs during the Reagan administration, and the consequent bias towards prosecution of crimes that women are more likely to be involved in, such as prostitution or petty drug crimes (Freudenberg, 2001). 74 THE INTERNATIONAL JOURNAL OF HEALTH, WELLNESS AND SOCIETY Women continue to represent a small fraction of the entire incarcerated population that has been increasing over the last two decades—from less than 5% in 2002 to 18% in 2009—despite the rapid increase in rates of imprisonment of women over the last decade (See Figure 3) (US Bureau of Justice Statistics, 2009). Because of this, women prisoners represent a population whose health is subject to vulnerability both because of their minority status within the incarceration population, and because of their increasing representation in a population that is traditionally viewed as “high risk” in terms of health status. As a result of underrepresentation within the correctional system, the inadequacies of female inmate’s health provisions often go overlooked in an institution systematized for the provision of male services (Lewis, 2006; Van den Bergh, Gatherer, & Moller, 2009). Correctional facil- ities frequently base female service delivery budget estimates on male inmate estimates even though there are higher costs associated with female healthcare delivery, and female prisoners suffer the consequences of this oversight in the form of decreased access to health services (Lewis, 2006; Binswanger, Krueger, & Steiner, 2009). 75 KELSEY WRIGHT The demographics of female incarcerates are also changing, with an increase in black and Hispanic populations, women who have substance abuse problems, and older women (due to both age of entrance and longer sentencing or recidivism from recurrent crimes or parole violations); these sub-populations are all at risk for higher morbidity and mortality than the general population (Binswanger, Krueger, & Steiner, 2009; Young & Reviere, 2001; Clark et al, 2006; Binswanger et al, 2009). Health and Women Prisoners There is a general paucity of literature available about the health of women in correctional facilities in the United States, and the availability of information grows even scarcer outside the realms of reproductive/sexual health, mental health, or infectious disease. This lack of information is complicated by inmates’ exclusion from National Health Surveys and clinical trials (Binswanger et al, 2009). The strength of existing data is compromised by reliance on local or state data and the absence of reliable, nationally representative measures (Binswanger et al, 2009). The existing literature gives an overview of access to care, but rarely, if ever, examines the quality or adequacy of care that female inmates receive (Young & Reviere, 2001). It shows that jails and prisons have high compliance with the National Commission on Correctional Health Care’s guidelines on immediate term care, but that they often neglect more complex regimes such as screening for non-infectious disease, preventative care, or complex care for chronic diseases (Clark et al, 2006). One study found that the most common health services provided were physical assessments, infectious disease screening, referrals, substance abuse treatment, and mental health treatment, but that screening for and treatment of chronic diseases were less consistent (Freudenberg, 2001). The general female incarcerated population represents a group with a significantly increased risk for health complications due to factors within and a priori to their incarceration, such as low socioeconomic status, low levels of education, high levels of drug use and abuse, poor nutrition and exercise regimes while incarcerated, high levels of riskier sex practices, high rates of infectious disease, potentially high rates of chronic disease, and significantly higher rates of mental illness and prior sexual and physical abuse (Binswanger, Krueger, & Steiner, 2009). Female inmates tend to report an increased prevalence of all illness in com- parison to male inmates, even though rates within the non-incarcerated female population were lower than men, excluding mental illness and prior sexual or physical abuse (Binswanger, Krueger, & Steiner, 2009). Female inmates have more difficulties gaining access to care than male inmates do and this lack of access, compounded by women’s specific healthcare needs due to gendered differences in anatomy, presentation of disease, and differences in life experiences (in this case mainly high rates of drug abuse and prior sexual and/or physical abuse), puts them at an even higher risk for illness and subsequent non-treatment (Freuden- berg, 2001). Diabetes and Women Prisoners in the United States Chronic illnesses, including diabetes, overcame infectious disease in the United States in the twentieth century as the leading causes of mortality and morbidity—7 out of 10 of the leading causes of death are chronic diseases—and as such have been designated as areas of national priority for improvement of care provision by the National Institute of Medicine 76 THE INTERNATIONAL JOURNAL OF HEALTH, WELLNESS AND SOCIETY (Binswanger, Krueger, & Steiner, 2009). Seventy percent of healthcare costs in the United States are attributable to chronic disease, with 174$ billion dollars in direct and indirect costs for diabetes alone, with added estimated costs for undiagnosed cases totaling at 218$ billion (American Diabetes Association, 2009; Marks, & Bales Harris, 2004). The majority of dia- betes (Type II) is preventable via the adoption of healthy behaviors such as exercise and proper nutrition, and is controllable through active lifestyle management and medication. Diabetes can worsen and lead to future complications, hospitalization, death, legal challenges associated with poor provision of care, and generally can lead to higher long-term costs if no preventative care is initiated (American Diabetes Association, 2009). The few studies that have examined rates of chronic disease in institutionalized populations have divergent outcomes, and none were found that explicitly examined incarcerated females’ incidence of and/or treatment of chronic disease. One study suggests, through anecdotal evidence, commentaries, and facility case studies, that higher rates of chronic disease, includ- ing diabetes, can be found in inmate populations than in the general population, but there is contradictory evidence of this and the evidence was not stratified by gender (Freudenberg, 2001). One of the most comprehensive studies available, which focused on both men and women, analyzed data from both the Survey of Inmates in State and Federal Correctional Facilities (SISFCF) and the Survey of Inmates in Local Jails (SILJ) in order to examine the prevalence of and care of chronic diseases compared to a nationally representative non-insti- tutionalized sample from the National Health and Nutrition Examination Survey (NHANES) (Wilper et al, 2009). The authors in this study found that inmates had higher or same rates of diabetes as compared to the general population, depending on different modes of stratific- ation, and found that inmates had lower access to medical services, follow up care, and medications, although female inmates were more likely to demand access to healthcare ser- vices than male inmates (Wilper et al, 2009). Multiple studies reference the lack of agency and control over individual healthcare as a major detriment to self-management in correctional institutions, alongside lack of access or quality of care. The literature that is available shows that inmates report worse health and there is evidence that they suffer from disproportionately higher rates of chronic and acute physical and mental health problems than do the general population, but the degrees of variance change with sub-populations and types of disease (Wilper et al, 2009; Young & Reviere, 2001). The American Diabetes Association (ADA) has also issued a position statement about managing diabetes care in correctional facilities, but it is aimed mostly at making recommendations for care and does not investigate existing evidence about prevalence or access to care for diabetes in correctional facilities (American Diabetes Association, 2009). It can be assumed that many female incarcerates would benefit significantly from educational programs that are geared towards self management skills, such as controlling weight and blood sugar levels through healthy diet and exercise, which are infrequently, if ever, provided. The women currently entering the U.S. prison system at the highest rates—women of color, substance users, and older women—are all at higher risk for development of or mis- management of chronic disease than others, including diabetes. The risk for diabetes increases two to fourfold in women of African American or Hispanic descent, and increases significantly with age (American Diabetes Association, 2009). Also, the increasing number of drug-de- pendant or drug-abusing individuals entering incarcerative institutions has implications for detection and treatment of diabetes—drug use can signal broad-spectrum health problems and can complicate treatment regimens (Young & Reviere, 2001; Binswanger et al, 2009). 77 KELSEY WRIGHT It is important to examine chronic conditions, including diabetes, in incarcerated populations, especially in female inmates, because they represent an extremely vulnerable population who can be conveniently allocated preventative care and social services to prevent recidivism and future healthcare problems, even if this is frequently not the reality of the situation. Discussion By utilizing the rights-based “3AQ” model as an advocacy and research framework, health care and social justice professionals can identify health issues facing current women prisoners and can make recommendations to policy makers, other researchers, and prison professionals in order to ensure that the human rights of female incarcerates are respected, protected, and fulfilled (See Table 2). The 3AQ model informs an approach that recognizes women prisoner’s right to the highest quality of health service possible while taking into account the unique context that constrains their individual agency, access, and self-efficacy with regards to health outcomes. There is a significant absence of available research that can be used for policy change with prisons. Little is known about the burden and costs of chronic illness in incarcerated populations, about access to care for diabetes, or about the variable effects incarceration may have on exacerbating disease symptoms or progression. One of the noted areas of access deficiency in the existing literature was lack of preventative or self-management tools for prisoners, which are essential for women who are pre-diabetic or diabetic (Wilper et al, 2009; Young & Reviere, 2001). For a population which has already had the majority of its ability to make personal decisions stripped away, advocating for the availabilityof nutrition and exercise facilities, accessto educational programs on self-management and prevention of chronic diseases, acceptabilityof proposed programs, and qualitynutrition, exercise, and medical program, will have a dramatic effect on health outcomes, expenditures, recidivism, and human rights compliance in the United States. Such an approach would encourage state and federal penitentiary systems to divert funding towards healthcare in correctional facilities, which could have a significant effect on bringing the healthcare provision in such facilities closer to national and international standards, thus improving both quality and access to care. It may also force healthcare systems that have been historically institutionalized to address only the health of certain genders or illness to reexamine their delivery of care and incorporate evidence based research into the design and implementation of health care in federal and state prisons. Finally, if self-management tools are implemented, they have the potential to empower women who have been left with little to no power by institutional, social, economic, and familial systems would give them the ability to actively participate in their own healthcare and make positive steps towards health in their own lives. Detection and treatment of chronic illness is a low priority in correctional facilities, even though there is evidence that suggests the implementation of such services would ultimately reduce recidivism and result in better re-entrance into the community upon exit. Withholding preventative or curative care from those who are under the auspices of state or federal gov- ernments, especially those who may not receive care otherwise, as is the case with the ma- jority of the women in the system, is violating not only their rights to non-discrimination and healthcare, but also deprives them of their right to participate in society as healthy and productive individuals. Especially in the case of diabetes, deprivation of access to educational 78 THE INTERNATIONAL JOURNAL OF HEALTH, WELLNESS AND SOCIETY resources to encourage self-management or prevention of the disease removes female inmate’s ability to participate fully in their own care. Recommendations Because they serve such a vulnerable population, prisons and jails serve as a potential bridge between their inhabitants and the external community and have the potential to initiate pre- ventative care services that could reduce the future healthcare costs of incarcerates and foster reduced recidivism and increased integration into the community after release (Van den Bergh, Gatherer, & Moller, 2009; Freudenberg, 2001). This potentiality has continually fallen short of expectations in line with both international and American national standards of human rights and healthcare compliance. 79 KELSEY WRIGHT Inmates rarely have tools for active self-management of diabetes because they are not in control of their diet or exercise regimes, have little access to health education, are frequently exposed to high-stress situations, and go off medications and go without regular checkups while incarcerated (Young & Reviere, 2001; Stoller, 2001). Shifting a small proportion of correctional budgets to health care provision and social services has the potential to result in decreased costs to society as a whole, while recognizing the dignity and human rights of women in prison, and could potentially lead to a valuation of prisoners as productive and healthy members of society rather than as the irreconcilable criminals they seem to encompass in the American punitive rhetoric (Wilper et al, 2009; Freudenberg, 2001; Young & Reviere, 2001). Future academic inquiries into diabetes and chronic disease in female inmates should focus on areas which would be most useful for effecting policy change. For example, academic work that could influence state and federal penitentiary systems to increase female inmate’s access to care, to set standards of care equal to the national baseline, to incorporate health education and exercise and nutrition programs to increase self-management of the disease, and to examine the costs of continuing to provide only menial and intermittent care have the potential to have a great impact on the existent system in the US. Future studies could focus on assessments of entrance screening for diabetes, of access to care, exercise, and nutrition for those already diagnosed, and could examine the impact of incarceration on the develop- ment of diabetes. On a macro level, an assessment of the costs to society of allowing female inmates to go undiagnosed and untreated or of the benefits of shifting minimal amounts of penitentiary budgets to healthcare have the potential to be more effective in the immediate term. In order to introduce new research that combines human rights paradigms with the health needs of female inmates, issues of availability, access, acceptability, and quality must be emphasized and utilized to enact change within the existing institution. Prisons and jails are notoriously difficult to access for researchers and advocates, and they embody an institution that will withdraw its participation at signs of external criticism. In order to engage female populations within these facilities in research and advocacy endeavors, access to the facilities themselves must be obtained through various avenues. Individual permissions of prison wardens may be one way to gain such access, but would perhaps be too time-consuming and labor intensive for researchers looking at nationally representative samples. On the other hand, establishing positive connections with wardens may provide the opportunity for more longitudinal studies, which would be an advantage for examining chronic illnesses with long term effects such as diabetes. Another potential form of access would be through the Bureau of Justice’s SISFCF or SILJ surveys, but access via these channels would be necessitated by federal or state backing and the census-like design would limit the researcher’s ability to propose more than a few significant questions. Finally, as rights of inmates become more prominent in the United States as a human rights issue, it may be easier to convince states and federal governing bodies to enact legislature to mandate the allowance of researchers into correctional facilities to conduct consensual research and to make the system itself more transparent and accountable for prisoner’s rights. Finally, potential programs that would be highly effective with regard to diabetes prevention and control and would conform to the 3AQ model include community driven projects such as prison based community gardens, such as the “Women’s Garden Project” from 2003-2004 80 THE INTERNATIONAL JOURNAL OF HEALTH, WELLNESS AND SOCIETY in British Columbia, which would cut prison food costs and encourage consumption of healthier foods by incarcerates (The Women’s Garden Project, 2010). As the U.S. prison system becomes more overburdened with increasing populations, it may become easier for health and human rights advocates to get prison administrators to participate in community based programs that offer concrete benefits to them in costs saved and benefits to the popu- lations they house. Conclusion The current demographic trend of women entering prisons—women of color, women with histories of substance abuse, and older women—in conjunction with prior indicators of poor health in the female population entering prison, poor provision of care in prison systems, and political unwillingness to advocate for improved conditions and human rights makes it easy to infer worse health outcomes for female inmates across the board. Prisoners, especially female prisoners, are a population who have been systematically made victims of structural violence in their individual lives, in the household, and in society at large. For many of these women, ending up in prison or jail is an inevitability resulting from societal constraints and changes in the social determination of criminality. Criminal status in and of itself does not confer exemption from those human rights that are universally afforded human beings through international legal agreements. The current state of health and health service provision in United States prisons is inadequate and could benefit immensely from using a rights-based approach to health that respects the dignity of prisoners as human beings, protects their human rights, and fulfills their health needs in a comprehensive and respectful way. This approach recognizes women prisoners as people deserving of their human rights and can begin the process to de-criminalize their status as inmates and re-humanize them to become patients deserving of high quality care. References American Diabetes Association. (2009). Diabetes basics-American diabetes association . Retrieved from http://www.diabetes.org/diabetes-basics/ Binswanger, IA., et al. (2009). Gender Differences in Chronic Medical, Psychiatric, and Substance- Dependence Disorders Among Jail Inmates. American Journal of Public Health,99(10), 1- 7. Binswanger, IA, Krueger, PM, & Steiner, JF. (2009). 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Retrieved from http://www.pewcenteronthestates.org/uploadedFiles/8015PCTS_ Prison08_FINAL_2-1-1_FORWEB.pdf The Women’s Garden Project. (October 14 2010). Gardens in Prisons.Retrieved from http://www.cityfarmer.org/prison.html United Nations Economic and Social Council. (11 August 2000). Substantive Issues Arising in the Implementation of the International Covenant on Economic, Social, and Cultural Rights: General Comment 14. Retrieved from http://www.unhchr.ch/tbs/doc.nsf/%28Symbol% 29/40d009901358b0e2c1256915005090be?Opendocument. United Nations. (2009). United nations treaty collection . Retrieved from http://treaties.un.org/Pages/ Treaties.aspx?id=4&subid=A〈=en US Bureau of Justice Statistics. (2009). Correctional Population in the United States, 2009. U.S. De- partment of Justice. Retrieved from http://bjs.ojp.usdoj.gov/content/pub/pdf/cpus09.pdf . Van den Bergh, BJ, Gatherer, A, & Moller, L. (2009). Women’s health in prison: urgent need for im- provement in. Bulletin World Health Organization , 87, 406. Wilper, A, Woolhandler, S, Boyd, W, Lasser, K, Bor, D, Himmelstein, D, & McCormick, D. (2009). The Health and health care of us prisoners: results of a nationwide survey. American Journal of Public Health , 99(4), 666-672. Young, V, & Reviere, R. (2001). Meeting the health care needs of the new woman inmate: a national survey of prison practices. Journal of Offender Rehabilitation , 34(2), 31-48. About the Author Kelsey Wright Ms. Wright is currently a MSPH candidate in Health Systems in the Department of Interna- tional Health at the Johns Hopkins Bloomberg School of Public Health. She has worked previously in a variety of health related contexts, including maternal mortality research in Kumasi, Ghana, and in society and health related research. Her academic and professional interests are centered on how to translate global human rights frameworks into on-the-ground, rights based programs, in health and social justice, and on the intersection between gender, health, and human rights. 82 THE INTERNATIONAL JOURNAL OF HEALTH, WELLNESS AND SOCIETY Copyright ofInternational JournalofHealth, Wellness &Society isthe property ofCommon Ground Publishing anditscontent maynotbecopied oremailed tomultiple sitesorposted to a listserv without thecopyright holder’sexpresswrittenpermission. However,usersmay print, download, oremail articles forindividual use.