Tools for Access Curriculum: Prisoners

Tools for Access Workshop Curriculum

Tools for overcoming treatment access barriers facing incarcerated people living with HIV and viral hepatitis co-infection in Canada

The following curriculum was developed using surveillance data collated by the Public Health Agency of Canada, peer-reviewed academic literature, grey literature, narrative accounts and information based on consultations with key stakeholders including community-based service providers and people living with HIV. The intention of this Curriculum Outline is to inform the development of CTAC Tools for Access workshops to address barriers to treatment access among people living with HIV in Canada who are or were previously incarcerated. It is intended as a working document to be reviewed, discussed and revised by the People who were in incarcerated Working Group.

For the purpose of this curriculum, barriers to treatment access should be considered in its holistic form, ensuring that access to support needs and care include the range of biomedical, complementary, traditional and alternative treatments required to achieve health and human rights for incarcerated people living with HIV and Viral Hepatitis in Canada.

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Tools for overcoming treatment access barriers facing people who use drugs living with HIV and Viral Hepatitis Co-infection

Contents 1. Overview of People Living with HIV and Viral Hepatitis Co-Infection who are Incarcerated or were Formally Incarerated............................................................................................................ 4 Epidemiology....................................................................................................................................................................................................4 Women in Prison..............................................................................................................................................................................................5 2. Structural, Social and Personal Barriers to Treatment, Care and Support....................................................................7 Health and Human Rights in Prison........................................................................................................................................................7 Criminal Law, Sex Work, Drugs and HIV...............................................................................................................................................8 Gender, Culture and Identity......................................................................................................................................................................9 Release and Reintegration..........................................................................................................................................................................11 3. Impacts of HIV Stigma and Discrimination on Access to Treatment, Care and Support.......................................13 4. Barriers to Holistic Treatment Access....................................................................................................................................15 5. Take Action: Tools, Solutions and Alternatives....................................................................................................................16 6. Appendix A: Post Incarceration Syndrome (PICS) ..........................................................................................................17 Works Cited........................................................................................................................................................................................18

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1

Overview of People Living with HIV and Viral Hepatitis Co-Infection in Canada who are Incarcerated or were Formally Incarcerated

The first section of this curriculum provides general background information on demographic trends in HIV and co-infection among people who are incarcerated, or who were incarcerated in federal or provincial correctional institutions. This information provides us with an overview of who is affected by HIV, Viral Hepatitis and incarceration. Factors considered include sex and gender, ethnic and cultural background, age, modes of transmission, HIV and AIDS prevalence.

Epidemiology1 • I t is difficult to determine the exact percentage or number of people who are living with HIV and/or co-infected with Viral Hepatitis in Canadian prisons.

While Correctional Services Canada (CSC) collects some information on HIV and Hepatitis C among people in prisons, it does not present the full picture of the epidemic behind bars. Impartial data collection is partly due to the fact the Canada does not subject prisoners to mandatory HIV or Hepatitis C testing upon entry or during incarceration, although voluntary based studies have been conducted. According to 2006 surveillance data provided by the Correctional Service of Canada (CSC), only 52.1% of all newly incarcerated people in federal correctional facilities had a blood test conducted.2 Additional information on HIV and Hepatitis C in prisons is available through voluntary small-scale, point-in-time research, the results of which are difficult to generalize to whole populations.3 • T he proportion of people living with HIV in prison is significantly higher than the proportion of people living with HIV in the general Canadian population.

Estimates of HIV prevalence in Canadian federal and provincial prisons range from 2% - 8%.4 In 2006, 1.64% of people in federal prisons were reported to be living with HIV.5 The prevalence of Hepatitis C among Canadian people in prison is estimated to be between 19.2 and 39.8%.6

1 2 3 4 5 6 7

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• T here is some difference in the rate of HIV infection between federal correctional facilities in different regions. 2004 data findings suggest that the west side of Canada reported the highest HIV prevalence rates among people in federal prisons (2.11%), followed

by Quebec (2.03%), the Prairie region (1.07%), the Atlantic region (1.00%) and Ontario (.98%).7 • I t is important to consider that Aboriginal people are highly overrepresented within provincial prison systems7:

– 5% of adult offenders in Nova Scotia are Aboriginal.

– I n Ontario in 2007/08, 8% of male and 13% of female offenders was Aboriginal.

– I n Manitoba, 63% of male and 74% of female adult offenders is Aboriginal.

– I n Saskatchewan in 2008, 77% of adult male and 90% of adult female offenders were Aboriginal.

boriginal people are also highly overrepresented in • A HIV and Viral Hepatitis prevalence:

– A pproximately, 4,300 to 6,100 Aboriginal people were living with HIV and AIDS in Canada in 2008.

– N ew infection rates among Aboriginal people were roughly 3.6 times higher than among non-Aboriginal people in 2008.

( Public Health Agency of Canada, 2010A; Public Health Agency of Canada, 2010B; Public Health Agency of Canada, 2010C; Public Health Agency of Canada, 2009A) (Public Health Agency of Canada, 2013) (Canadian HIV/AIDS Legal Network, 2007) (Canadian HIV/AIDS Legal Network, 2007) (Public Health Agency of Canada, 2009A) (Skoretz, 2004) (Public Health Agency of Canada, 2009A)

Tools for overcoming treatment access barriers facing people who use drugs living with HIV and Viral Hepatitis Co-infection

Prevalence of HIV at year-end in Canadian federal penitentiaries, 2000-2006

2.5 2.0

1.70%

1.80%

2.04%

1.92% 1.43%

1.5

1.67%

1.64%

2005

2006

1.0 0.5 0.0

2000

2001

2002

2003

2004

Source: (Public Health Agency of Canada, 2009A)

• 1 7.3% of federally sentenced prisoners by March 2009 were Aboriginal. According to 2007 findings, 11.7% of Aboriginal prisoners were HIV-positive and 49.1% of Aboriginal prisoners were infected with HCV.8 • B lack prisoners account for 6% of federally incarcerated people, while those serving time in the community account for 7%.9 • I t is important to highlight that people who are incarcerated are 7-10 times more likely to be infected with HIV than people who are not in prison.10

• W hile it is difficult to determine prevalence of HIV by ethnicity among women in prison, there is strong reason to believe that Aboriginal women, as well as Black, African and Caribbean women who are incarcerated are more likely to be living with HIV than their white women counterparts.

• C onsider the following information of Aboriginal women’s overrepresentation in prisons and in HIV prevalence:

– Given

that combined, Aboriginal men and women account for only 3.7% of the Canadian population, Aboriginal women are highly over represented among federally and provincially incarcerated women in Canada:

o A ccording to 2004-5 statistics, 30% of female prisoners are Aboriginal in the provincial system.

o 2 005-6 data findings from federal systems indicate that 25% of female prisoners are Aboriginal. This figure has increased steadily since 1997, when Aboriginal women made up 15% of federal female prisoners.

Women in Prison • W omen in prison are more likely than men to be living with HIV. The rate of HIV infection for women in prisons is approximately 4.7%, while men in prison display a prevalence of approximately 1.7%. Self-reported HIV rates of women in federal facilities collected in 2007 indicated 7.9% prevalence, while the male self-reported HIV rate was 4.5%.11

8 9 10 11

(Prisoners with HIV/AIDS Support Action Network, 2011) (Prisoners with HIV/AIDS Support Action Network, 2011) (Prisoners with HIV/AIDS Support Action Network, 2011) (Zakaria D, 2010)

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o I n Saskatchewan, Aboriginal women account for 87% of all female admissions.

o I n Manitoba and Yukon, Aboriginal women account for 83% of all female admissions.

o I n Alberta, Aboriginal women account for 54% of all female admissions.

o I n British Columbia, Aboriginal women account for 29% of all female admissions.12

• A boriginal women are also highly overrepresented in HIV prevalence when compared with women in the general population:

o O ver the last 10 years, women accounted for approximately 23%-28% of HIV positive test reports. Aboriginal women, however, accounted for as much as 50% of HIV cases among Aboriginal people.

o A boriginal women are more likely than non-Aboriginal women living with HIV to be diagnosed with AIDS (26.5% vs. 9.1%).13

• B lack women account for approximately 5% of incarcerated women, however, only represent 2.3% of the population. Black, African and Caribbean women are also overrepresented in HIV prevalence and AIDS reports:

o N ational data illustrates that people who were from countries where HIV is endemic account for an average of 9.0% of HIV incidences among women from 1985–2006.

o F indings from 2005 suggest that in Ontario alone, women from countries where HIV is endemic comprised 50.8% of all newly diagnosed HIV cases.

o E vidence from Quebec show 41.3% of newly diagnosed HIV infections among women were attributed to HIV endemic countries.14

12 (Prison Justice, 2008) 13 (Public Health Agency of Canada, 2009a) 14 (Public Health Agency of Canada, 2009)

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Tools for overcoming treatment access barriers facing people who use drugs living with HIV and Viral Hepatitis Co-infection

2

Structural, Social and Personal Barriers to Treatment, Care and Support

Section 2 of this curriculum explores the specific structural, social and personal barriers preventing people who are or have been incarcerated, who are living with HIV or Hepatitis C co-infection, from accessing treatment, care and support. The curriculum outlines the relationship between the illegality of drugs, commercial sex work and punitive laws affecting people living with HIV, and the relevance of this relationship to treatment access within correctional facilities and throughout the reintegration process that follows release from custody. It addresses the rights of people in prison to health and the violations experienced by many people in prison who are living with HIV. Several aspects of the social determinants of health, including gender, culture and race that influence treatment access in prison are also discussed.

Health and Human Rights in Prison • I t is a well-established international legal principle that every person who is incarcerated maintains their human right to health. Prison healthcare should, therefore, be equivalent to the healthcare services provided within the community.15 • A ccording to the Canadian Charter of Rights and Freedoms and laws that govern prison systems, requirements to safeguard the health and well being of incarcerated people exist and are enforced governments. Among Canadian jurisdictions, only the federal government has “a statutory (i.e., written in a law) obligation to provide prisoners with essential health care akin to that available in the community”. Governance of the federal prison system is placed under the Corrections and Conditional Release Act (CCRA) and other additional supplementary regulations. Rehabilitation and reintegration into the community is outlined under sections 85 to 88 of the CCRA. In order to assist incarcerated people throughout the rehabilitation process, CSC is mandated to ensure that every prisoner is provided with the “essential health care and reasonable access to non-essential mental health care” that will contribute and support the recovery of imprisoned people as active members of society.16

15 16 17 18

• D espite legislated rights and protections, people living with HIV face challenges accessing prescribed treatment, care and support while they are in prison, as well as following their release from custody.

Incarceration and post-incarceration circumstances in Canada have been associated with treatment interruptions, lowered adherence and inhibited treatment outcomes.17 • H arm reduction programming proven to work at the level of the community is overwhelmingly denied to people living with HIV and Hepatitis C co-infection in prison, despite obligations to provide these services in national and international law. The Government of Canada, along with some provincial and local government bodies, has recently made significant reductions in the available funding for addressing HIV treatment, care and support. These recent funding cuts to harm reduction services for people who use drugs are ideologically and politically driven and do not reflect evidence or best practices in the provision of treatment, care and support.18

(World Heatlh Organization, 2007) (United Nations Office on Drugs and Crime, 2009) (Canadian HIV/AIDS Legal Network, 2007) (Canadian HIV/AIDS Legal Network, 2007) (Palepu, 2004; www.pasan.org; Canadian Drug Policy Coalition, 2012) (Canadian HIV/AIDS Legal Network, 2007)

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• L ack of confidentiality within correctional facilities deters treatment access for people within the system. Picking up medications and seeking health services within prison can identify a person as living with HIV and generate stigma, discrimination, violence and isolation that are imposed by both institution staff and fellow prisoners. Within male facilities, for example, seeking HIV treatment and support may lead fellow prisoners to identify a person living with HIV as gay and render him the target of homophobic discrimination and abuse.

• C ompeting clinical demands on health service staff within institutions results in sub-optimal health care and does not reflect the quality of co-infection services offered outside prison walls.

• P eople living with HIV and Viral Hepatitis have reported difficulties in accessing specialized co-infection medical support while incarcerated. Lack of specialized services limits access to health information needed to make prudent health choices and manage HIV and co-infections.

• C ritical support services for people living with HIV are difficult to impossible access within prisons. Many people who are in prison have a history of poverty, child abuse, sexual violence, drug use and/or mental health illness. The necessary counsellors and support services required to address these issues impede the overall success of treatment by neglecting the personal or mental health barriers preventing treatment access and adherence.

• T herapy effectiveness maybe strongly contingent upon following a proper diet plan. That is, access to nutritious foods is essential to treatment success for people living with HIV. Drug protocols, for instance, often require that specific medications must be taken with specific foods or in relation to meal times.

Despite the importance of meeting a certain level of dietary expectations for effective medication management, getting access to diverse fresh foods and

sources of protein can be challenging in prison settings where bare minimum style nutrition is offered.19 • T he use of drugs, including alcohol, is illegal in prison, as is sex between inmates. Adherence support programs, particularly for people who actively use drugs, are not available despite evidence that demonstrates proven success of such programs within the broader community. On an individual level, some correctional staff are also unwilling to provide condoms to incarcerated people based on the belief that it enables illegal sex between prisoners.

Criminal Law, Sex Work, Drugs and HIV • I n Canada, people living with HIV risk criminal prosecution for failing to disclose their HIV status to sexual partners prior to engaging in activities that the court deems to be of “significant risk of transmission”.20 On October 5th, 2012, The Supreme Court of Canada delivered a landmark ruling on the criminality of HIV non-disclosure. The verdict included clarification of what constitutes this ‘significant risk”. Specifically, The Court determined that when a condom is used and the person living with HIV has achieved a low viral load through treatment, significant risk has not occurred. Therefore, both a condom and low viral load are necessary to forgo criminal accusations for HIV-non disclosure to sexual partners, despite overwhelming evidence that either method alone is sufficient to prevent transmission. In addition, The Court did not provide a definition of what constitute a low viral load, thereby increasing a person’s chance of being criminally convicted.

• M any people living with HIV in Canada have been handed prison sentences for alleged HIV non-disclosure. Consequently, many people living with HIV in Canada have understandably reported fear of disclosing their HIV status for legitimate fear of criminal charges, as well as abandonment, gender-based violence, fear of community reactions, social isolation and exclusionary-based or hate-related violence.21

19 (Prisoners with HIV/AIDS Support Action Network, 2011) 20 In 1998, the Supreme Court of Canada in R. v. Cuerrier, [1998] 2 S.C.R. 371 held that an individual’s failure to disclose his or her HIV-positive status may render consent to sex legally invalid if the person’s partner was exposed to a “significant risk” of HIV infection. The court held that transmission of HIV was not required for a conviction on an assault charge (exposure to a “significant risk” of infection without disclosure is sufficient for a conviction). This ruling was affirmed in R. v. Williams [2003] 2 S.C.R. 134 21 (Canadian HIV/AIDS Legal Network, 1999)

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Tools for overcoming treatment access barriers facing people who use drugs living with HIV and Viral Hepatitis Co-infection

• M any people living with HIV, akin to those in the general population, use what society has termed ‘drugs’ for a variety of medicinal, spiritual and recreational purposes. Some people also use drugs as a coping mechanism to deal with the impacts of trauma and related mental health issues. Many people in prison, for example, use drugs and many begin drugs to relieve boredom and belong to communities.22 • L aws in Canada prohibit the use of drugs. Such laws are accredited to the nternational ar on rugs, which dictates what drugs are legal for sale and consumption, who is legally able to produce and sell them and when and to whom they can sell them to.

Enforcement of the war on drugs involves punitive laws for punishing people who use them, often resulting in criminal charges and incarceration. In response, many community activists have dubbed the war on drugs as truly a war on people who use drugs.23 • D rug use in prison is illegal and is enforced through random cell checks and urine tests. As a result, many people who use drugs, such as marijuana or hashish, turn to injection drug use as its traces exit the bloodstream faster and smell of smoke is not an issue.

Those who use drugs in prison and are caught can sometimes result in longer sentences and stronger conditions for parole.24 • T he ability to address multiple treatment requirements of people in prison who use drugs can be challenging. While services to help treat addictions, such as Methadone Maintenance Therapy (MMT), are accessible to those incarcerated and who were previously receiving treatment, circumstances exist where those imprisoned may be subjected to a 72 hour delay. This delay period may often intensify withdrawal symptoms.

• A cross the country, provinces and territories maintain punitive laws against commercial sex workers.

While some regions have less stringent laws and enforcement than do others, each region continues to charge, convict and imprison people who engage in

commercial sex work. Many commercial sex workers in Canada are living with HIV and Viral Hepatitis co-infection, often as a source of financing for drug use, particularly for sex workers who have traumatic histories. The criminalization of sex work and drug use in this population leads to frequent encounters with law enforcement and often results in incarceration. Furthermore, women and Trans women who engage in commercial sex are disproportionately at risk for incarceration.

Gender, Culture and Identity • A boriginal people face unique barriers to treatment access within prison that stem from the impacts of racism and cultural discrimination of Aboriginal people in Canada. Access to traditional healing for Aboriginal people is limited in prison settings. Many Aboriginal people make use of traditional healing resources including smudging, sweat lodges, guidance from elders and other healing ceremonies. Aboriginal organizations attempting to bring healing and ceremonial services to incarcerated people are often met with resistance from prison officials. Guards are known to search providers upon entry and confiscate traditional medicines, including sage, sweet grass, cedar and tobacco, stating that they are counter to anti-smoking and drug policies within prison.25 • T he overrepresentation of Black, African and Caribbean people within Canadian prisons holds a close relationship to the social determinants of health.

Social inequities, including systematic racism and discrimination preventing equal participation in society, as well as lack of economic opportunities and access to education, are often experienced by these groups of communities. African and Caribbean communities experience a similar lack of culturally competent care within prisons as do Aboriginal people in prison. It is important to note, however, that there is still a considerable gap of knowledge that exists in research when considering the specific treatment access barriers affecting Black, African and Caribbean prisoners.26

22 (Prisoners with HIV/AIDS Support Action Network, 2011) 23 (Canadian Coalition for Drug Policy, 2012)(CTAC Working Group on People Who Use Drugs, 2012) 24 (Prisoners with HIV/AIDS Support Action Network, 2011) 25 (Prisoners with HIV/AIDS Support Action Network, 2011) 26 (Prisoners with HIV/AIDS Support Action Network, 2011) (Public Health Agency of Canada, 2009)

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• T ransgender women (male-to-female) are among the most vulnerable of populations in prison. Maleto-female Trans prisoners are frequently sexually objectified by male prisoners. The risk of violence among Trans prisoners is alarmingly high, causing many Trans prisoners to trade sex for protection, often with abusive alpha male partners.

• T rans prisoners are subjected to degrading treatment from prison staff and fellow prisoners alike. By placing male-to-female Trans prisoners in male institutions and insisting on using their birth or biological name, the prison environment denies Trans women the status of being a woman.

• T here are limited to no services for Trans prisoners living with HIV and forces of stigma compel Trans women to conceal their status and forgo treatment, care and support. Hormone therapy is often cut off for trans prisoners leading to a reversal in body changes - a significant source of distress for Trans prisoners.27 • W omen are often imprisoned based on economically-based offenses that relate to poverty, homelessness and single parenthood. Shoplifting, failure to pay fines and fraud are examples of common offences committed by women. Women are also frequently incarcerated for prostitution. Women are often classified to require ‘maximum security’ due to their inability to adapt to the institutional environment rather than being deemed as a threat to the security of others. Consequently, maximum security prisoners are unable to access community-based support services available in lower security institutions.28 This can impose significant challenges for women living with HIV and/or Viral Hepatitis co-infection.

• W omen in prison have a strikingly high likelihood of being victims to a history of violence and abuse. An estimated 80% of women in federal prisons reported a history of physical or sexual abuse. This percentage

is estimated be even higher for Aboriginal women in prison, where the figure is believed to be 90%.29 • B ecause women compromise a very small portion of incarcerated people in Canada, fewer prisons for women exist than for male counterparts. Women sentenced to prison, therefore, will be sent to one of two prisons in their region. The selected institution could be a far distance away from her home community, isolating her from the essential community-based support services and social support networks of friends and family. Isolation from children is particularly stressful and difficult for women living with HIV in prison.30 • W omen are vulnerable to criminal prosecution due to current laws and regulations surrounding HIV non-disclosure. Imbalances in power relationships between men and women, including those between men and transgendered women, make it increasingly challenging for women living with HIV to reveal their status or to negotiate safer sex practices with their male partners. Negotiating condom use is particularly difficult for women, as it requires the explicit consent and cooperation of men. Women are particularly vulnerable to violence if they do not concede to the sexual desires of their male partners.

• V iolence against women is associated with disclosing HIV status. The current law on HIV non-disclosure provides men who are involved with women living with HIV a tool to intimidate, coerce and trap them in abusive relationships. Men have used criminal allegations against women living with HIV as a weapon of abuse, making justice, autonomy and safety almost entirely unreachable.

“If you ever leave me,” he says, “This is what I’ll do to you. I will take you to court. And I will tell them that you infected me…”

– Aboriginal Woman Living with HIV31

27 (Scott, 1998) (Prisoners with HIV/AIDS Support Action Network, 2011) 28 (Prisoners with HIV/AIDS Support Action Network, 2011) 29 (Canadian Human Rights Commission , 2003) 30 (Prisoners with HIV/AIDS Support Action Network, 2011) 31 (Canadian Aboriginal AIDS Network , 2009)

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Tools for overcoming treatment access barriers facing people who use drugs living with HIV and Viral Hepatitis Co-infection

• W omen living with HIV who are sent to prison are separated from their children in the process. The State

men are affected. earing the challenges that single parents may experience when attempting to regain custody upon release, women may feel compelled to leave children with family members who may have previously abused them. The stress, sorrow and guilt that mothers in prison experience when being separated from children cannot be understated. The mental health impacts of this detachment can highly influence the willingness to seek and adhere to treatment, care and support for HIV and Viral Hepatitis co-infection. exual and reproductive health care within female • S penitentiaries is lacking. Given the proportion of women who have experienced violence, including sexual brutality, many women are uncomfortable, reluctant and unwilling to be treated by male physicians. There is an insufficient amount of female physicians available in correctional institutions, thus, presenting a critical barrier for women living with HIV or co-infected with Hepatitis C to access services.22 The level of prenatal care women receive in prison is also important to consider. There is evidence to suggest that women are not getting the adequate prenatal care required in prison, causing not only potential harm to both the mother and child, but also increasing the risk of vertical transmission. The following story of a women giving birth in prison unattended is a telling example of the quality of reproductive care offered to incarcerated women:

– http://www.cbc.ca/news/canada/ottawa/ story/2012/10/10/ottawa-jail-baby-born-cornwall-woman-complaint.html?cmp=rss

The World Health Organization defines gender as “what a society believes about the appropriate roles, duties, rights, responsibilities, accepted behaviours, opportunities and status of women and men in relation to one another.” Gender relationships are experienced within the social environment we live in and are rooted in cultural norms, beliefs and traditions.

(The World Health Organization 2012)

Release and Reintegration • R elease from custody is a challenging time for all people who have been incarcerated, especially for those who have spent long and repeated periods in prison. Post-Incarceration Symptom (PICS), a trauma-informed framework developed by psychotherapist Terence Gorski, defines the range of symptoms experienced by prisoners who have undergone prolonged incarceration. The severity of these symptoms is related to:33

– The level of coping skills prior to incarceration;

– length of incarceration and the restrictiveness of the incarceration environment;

– the number and severity of institutional episodes of abuse;

– the number and duration of episodes of solitary confinement;

– and the degree of involvement in educational, vocational and rehabilitation programs.

• W hile PICS provides insight into prison institutionalization, it is not recognized at all. Symptoms of PICS are dealt with in reactive and punitive ways by service providers inside and outside the prison environment.

See Appendix A: Post Incarceration Syndrome for a list of associated symptoms and behaviours.

32 (Prisoners with HIV/AIDS Support Action Network, 2011) 33 (Prisoners with HIV/AIDS Support Action Network, 2011)

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• R elease from prison may lead to interruptions in treatment access as newly released people attempt to find service and supports for HIV and Viral Hepatitis co-infection during this period of transition. Access to transitional housing, for example, is critical to ensure seamlessness in treatment access throughout the release process. Ensuring safe and affordable housing with proper water and sewage that is located close to essential support services, are incredibly important factors for treatment success. nce released from prison, many people experience housing-related discrimination.

• A bility to reintegrate back into society requires that people re-enter the workplace. People who have been in prison are often at a disadvantage, as many organizations conduct criminal checks and/or ask if potential employees have a criminal record. People with HIV and Viral Hepatitis co-infection that were previously incarcerated have increased difficulty finding employment and are also subject to workplace discrimination. Many who are victims of even subtle rejection often feel the pressure to leave their jobs if their HIV status is disclosed.34

34 (Public Health Agency of Canada, 2013)

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Tools for overcoming treatment access barriers facing people who use drugs living with HIV and Viral Hepatitis Co-infection

3

Impacts of HIV Stigma and Discrimination on Access to Treatment, Care, and Support

HIV-related stigma and discrimination are at the root of many barriers to accessing holistic treatment, care and support for people living with HIV. People living with HIV face severe stigma and discrimination as a result of societal beliefs, attitudes and behaviors regarding HIV and AIDS. This section of this curriculum provides an overview of stigma and discrimination as it impacts holistic treatment access for people who are incarcerated or who have been released from custody and addresses the ways in which HIV-related stigma and discrimination is at the core of understanding all barriers to treatment access.

It is important to consider all aspects of barriers-structural, social cultural, political, economical, or personal-in the context of HIV as a stigmatized and isolating illness.

• S tigma and discrimination against people living with HIV is fairly prominent and visible within several areas of society, such as health service provision, criminal legislation, employment and by the general public at large. Criminal record checks provides one example of how incarceration can prevent people • living with HIV from obtaining employment.

• S tigmatizing and discriminatory behaviour profoundly influences and impacts the ability to seek and access treatment. For people living with HIV and who have been involved with the criminal justice system, stigma and discrimination are the primary causes for creating barriers to HIV treatment access and management.

ruptions and are often unable to access specialized HIV and co-infection services. Furthermore, the poor treatment of people living with HIV who are in prison or who were formally incarcerated often causes avoidance of health systems and support services.

Stigma and discrimination of HIV and Hepatitis C intersects with stigma and discrimination against drug use, commercial sex work, race and culture, mental health, homelessness and unstable housing and sexual preference. The diagram on page 14 depicts the layers of stigma and discrimination people experience when attempting to access services and supports.

• P unitive laws against drug use, sex work and non-disclosure are reasons why many HIV positive people are sent to prison. Once incarcerated, people living with HIV may experience treatment inter-

“HIV-related stigma refers to the negative beliefs, feelings and attitudes towards people living with HIV and/or associated with HIV. Thus, HIV-related stigma may affect those suspected of being infected with HIV; those who are related to someone living with HIV; or those most at risk of HIV infection, such as people who inject drugs, sex workers, men who have sex with men and transgender people.”

“HIV-related discrimination refers to the unfair and unjust treatment (act or omission) of an individual based on his or her real or perceived HIV status. Though HIV-related stigma often leads to discrimination, it is important to note that even if a person feels stigma towards another, s/he can decide not to act in a way that is unfair or discriminatory. Conversely, a person may discriminate against another without personally holding stigmatising beliefs, for example, where discrimination is mandated by law.”

(UNAIDS, 2010)

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homelessness and unstable housing

involvment in commercial sex

mental health

race and culture

Stigma and discrimination against HIV affects access to treatment, care and support for HIV-positive people who are incarcerated or were incarcerated in the following ways: • I mpels people to withhold HIV and Viral Hepatitis co-infection status, along with other important general health information, from others due to fear of violence, discrimination and stigmatization and/ or fear of its bearing on safety.

• G eneral public unawareness, ignorant and biased prejudicial attitudes inhibits people from seeking critical social support networks. The lack or absence of social support is not only necessary for effective HIV and Viral Hepatitis co-infection management, but may also play a negative role in one’s mental health status.

14

sexual preference

HIV and HIV/Hepatitis C Co-infection

substance use

• T reatment interruptions and discontinuation of medicines and access to essential support services could have devastating effects for people living with HIV. Not only are people subjected to increased risk of the development of drug resistance, but also loss of control over their autonomy by not being able to effectively manage their condition.

• P rison guards prohibit substances that are used for traditional and cultural healing purposes. This inhibits people living with HIV from accessing holistic forms of treatment that could be beneficial and complementary to other modes of treatment.

• V iolence against women and transgendered women is evident and concerning. Gender-based violence continues to exist and subjects women to increasingly dangerous situations without any or minimal protection.

Tools for overcoming treatment access barriers facing people who use drugs living with HIV and Viral Hepatitis Co-infection

4

Barriers to Holistic Treatment Access

This section of the curriculum provides a summary overview of the barriers, including social, structural and personal barriers, preventing people living with HIV or Viral Hepatitis co-infection from accessing holistic treatment, care and support required to achieve the best treatment experience possible.

• P risoners HIV/AIDS Support Action Network (PASAN) is a Toronto-based community AIDS Service Organization that formed in 1991 in response to HIV/ AIDS in Canada’s correctional facilities.

• P eople who are in prison or people who have been in prison and who are living with HIV face several barriers accessing treatment and support services. These barriers could be found in the guide:

• P ASAN strives to provide prisoners and ex-prisoners, youth in custody and members of their family community development educational tools, support and harm reduction strategies related to HIV/AIDS and Hepatitis C in Ontario, with the overall goal to create social change.

• C hapter one, Preparing for Prison Work, discusses and provides an excellent overview of the diverse system barriers that are faced by people in prison who are living with HIV and/or HCV, in particular:

• I n 2011, PASAN released their second edition of, Pros & Cons: A Guide to Creating Successful Community-based HIV-AIDs Programs for Prisoners, a guide that provides comprehensive background information on Canada’s correctional facilities, as well as ideas and strategies to assist in the development of accessible and community-based HIV/AIDS services for people in prison.

– People who use drugs

– Women

– G ay/Lesbian/Bisexual/Transgendered communities

– R acialized communities, including Black, African and Caribbean prisoners

– Aboriginal communities.

The guide can be downloaded at: http://www.pasan.org/Publications/Pros_&_Cons-2nd_Ed_2011.pdf

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5

Take Action: Tools, Solutions and Alternatives

Below is a list of actions you can take as people who have been or are incarcerated and living with HIV and/or Viral Hepatitis co-infection, as a service provider working with prisoners and/or ex-prisoners, as a researcher or policymaker, or an allied member of the community. ment process, including how complete the how to make contact with the institution and how to gain security clearance. At the end of the chapter, suggested further reading material is listed.

• P risoners HIV/AIDS Support Action Network (PASAN) is a Toronto-based community AIDS Service Organization that formed in 1991 in response to HIV/AIDS in Canada’s correctional facilities. PASAN strives to provide prisoners and ex-prisoners, youth in custody and members of their family community development educational tools, support and harm reduction strategies related to HIV/AIDS and Hepatitis C in Ontario, with the overall goal to create social change.

• I n 2011, PASAN released their second edition of, Pros & Cons: A Guide to Creating Successful Community-based HIV-AIDs Programs for Prisoners, a guide that provides comprehensive background information on Canada’s correctional facilities, as well as ideas and strategies to assist in the development of accessible and community-based HIV/AIDS services for people in prison.

Several tools and courses of action to get involved could be found in the guide: • C hapter two, Getting Started, offers tools for community-based health professionals by providing a walkthrough of the potential opportunities for program development. The chapter provides the steps involved to assist health professionals and providers throughout the program develop-

• C hapter three, Program Development-Prevention Education, Outreach, Care, Treatment and Support, , outlines strategies and tools on how to develop programs that support accessible HIV/HCV prevention education and outreach services within the challenging prison environment. In addition, the chapter highlights the unique supportive services that people living with HIV and/or HCV in prison require, as well as proposes recommendations for outreach workers to address these needs.

• C hapter four, Client Support, examines ways in which agencies could provide client support. The two main specific strategies discussed in the chapter are communication and advocacy work. The chapter provides client-system advocacy guidelines, methods of having client needs met and samples of advocacy letters. Lastly, lists support services t may be requested and required by clients as well as ways to develop policies and practices these of equests.

• C hapter f%ve, Release Support-Before, During, and After, provides several services and supports that are available for prisoners soon to be released. Strategies to help agencies become more accessible to the unique needs of prisoners are outlined, as well as ways in which agencies could provide assistance to clients throughout the reintegration process and facilitate continued use of services.

The guide can be downloaded at: http://www.pasan.org/Publications/Pros_&_Cons-2nd_Ed_2011.pdf

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Tools for overcoming treatment access barriers facing people who use drugs living with HIV and Viral Hepatitis Co-infection

Appendix A: Post Incarceration Syndrome (PICS)1 Adapted from (Prisoners with HIV/AIDS Support Action Network, 2011)

Symptoms and conditions related to PICS: 1.

Institutionalized Personality Traits – Institutionalized Personality Traits are caused by living in an oppressive environment that demands: passive compliance to the demands of authority figures, passive acceptance of severely restricted acts of daily living, the repression of personal lifestyle preferences, the elimination of critical thinking and individual decision-making and internalized acceptance of severe restrictions on the honest self-expression thoughts and feelings.

2.

Post-Traumatic Stress Disorder (PTSD) – Post-Traumatic Stress Disorder (PTSD) is caused by traumatic experiences both before incarceration and institutional abuse during incarceration that includes the six clusters of symptoms: (1) intrusive memories and flashbacks to episodes of severe institutional abuse; (2) intense psychological distress and physiological reactivity when exposed to cues triggering memories of institutional abuse; (3) episodes of dissociation, emotional numbing and restricted affect; (4) chronic problems with mental functioning that include irritability, outbursts of anger, difficulty concentrating, sleep disturbances and an exaggerated startle response; and (5) persistent avoidance of anything that would trigger memories of the traumatic events; (6) hyper-vigilance, generalized paranoia and reduced capacity to trust caused by constant fear of abuse from both correctional staff and other inmates that can be generalized to others after release.

3.

Anti-social Personality Traits – Anti-social Personality Traits are developed both from pre-existing symptoms and symptoms developed during incarceration as an institutional coping skill and psychological defence mechanism. The primary anti-social personality traits involve the tendency to challenge authority, break rules and victimize others. In those observed with PICS, these tendencies are veiled by the pas-

sive-aggressive style that is part of the institutionalized personality. Those with PICS tend to be duplicitous, acting in a compliant and passive-aggressive manner with therapists and other perceived authority figures while being capable of direct threatening and aggressive behaviour when alone with peers outside of the perceived control of those in authority. This is a direct result of the internalized coping behaviour required to survive in a harshly punitive correctional institution that has two sets of survival rules: passive aggression with the guards and actively aggressive behaviour with predatory inmates.

4. Social-Sensory Deprivation Syndrome – The Social-Sensory Deprivation Syndrome is caused by the effects of prolonged solitary confinement that imposes both social isolation and sensory deprivation.

These symptoms include severe chronic headaches, developmental regression, impaired impulse control, dissociation, inability to concentrate, repressed rage, inability to control primitive drives and instincts, inability to plan beyond the moment, inability to anticipate logical consequences of behaviour, out of control obsessive thinking and borderline personality traits.

5.

Reactive Substance Use Disorders – Prisoners who experience PICS may also suffer from the symptoms of substance use disorders. Many were addicted prior to incarceration, did not receive treatment during their imprisonment and continued their addiction by securing drugs while in prison. Others developed their addiction in prison in an effort to cope with the PICS symptoms and the conditions causing them.

Others relapse to substance abuse or develop substance use disorders as a result of using alcohol or other drugs in an effort to cope with PICS symptoms upon release from prison.

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Tools for overcoming treatment access barriers facing people who use drugs living with HIV and Viral Hepatitis Co-infection

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