With Dignity and Respect

1. With Dignity and Respect NAPWA National Association of People with AIDS

2. Overview of Presentation • This segment will primarily focus on: • the importance of the Denver Principles in addressing HIV criminalization (start of the call) • advocacy for alternative programs and services to replace these laws (Q/A portion of the call or end of the call)

3. Presentation Outline • Brief history about NAPWA • Importance of the Denver Principles • Restatement of relevant sections • Evolution of the Denver Principles into NAPWA’s Principles for Prevention with Positives • Restatement of relevant sections • Why HIV criminalization is a human rights & public health challenge • Next steps - advocacy for evidence-based alternatives to HIV criminalization

4. NAPWA-US (1983) • NAPWA is the oldest national AIDS organization domestically and is the first network of people living with HIV/AIDS (PLWH/A) in the world. • NAPWA’s mission statement was revised in 2009 and now states that: • NAPWA advocates for the lives and dignity of all people living with and affected by HIV/AIDS. • The Denver Principles serve as NAPWA’s foundation.

5. The Denver Principles (1983) • The Denver Principles, often been referred to as the PLWH/A community’s first Bill of Rights and Responsibilities, contains the following sections relevant to today’s conversation: • We recommend that all people: • Not scapegoat people with AIDS or blame us for the epidemic • We recommend that people with AIDS: • Have an ethical responsibility to inform potential sexual partners of their health status. • People with AIDS have the right: • To as full and satisfying sexual and emotional lives as anyone else. www.napwa.org

6. Principles of HIV Prevention with Positives (2005) • Prevention must be a shared responsibility. • Effective programs must fully accept the right of people living with HIV/AIDS to intimacy and sexual health. • Stigma, discrimination, shame and fear drive people underground and make prevention harder for everyone, especially positive people. • Coercion/criminalization is not the answer – and certainly shouldn’t be the first answer. www.napwa.org

7. Why HIV Criminalization is a Human Rights & Public Health Challenge • People living with HIV/AIDS (PLWH/A) have had to (and continue to) overcome insurmountable challenges and hurdles to ensure survivability. With the advent of life-saving treatments, it appeared that PLWH/A would have the opportunity to live a “normal” life. But stigmatization in the form of laws that criminalize the transmission of HIV have the potential to dismantle all the efforts the PLWH/A community has made to ensure that we are treated with dignity and respect. International Stigma Conference (2010)

8. Why HIV Criminalization is a Human Rights & Public Health Challenge • The fear and stigma associated with HIV/AIDS led to the enactment of both civil and criminal statutes that profoundly violate the rights of PLWH/A and perpetuate myths about HIV transmission. Furthermore, HIV criminalization undercuts the most basic message of HIV prevention and sexual health, which is that each person must be knowledgeable about and responsible for his or her own choices. International Stigma Conference (2010)

9. Partnering of sound public health and self-empowerment principles • NAPWA advocates for a comprehensive continuum of services to address nondisclosure and transmission of HIV: • 1. A national awareness campaign to counter stigma • 2. Routine voluntary counseling & testing • 3. Referral & linkage to care upon diagnosis • 4. Access to medications (i.e. reduce viral load) • 5. Alternatives to HIV criminalization

10. Alternatives to HIV CriminalizationStand Alone or in Combination It makes no sense to have the justice system continue to treat health status as a crime. Perhaps we should try to expand funding for evidence-based programs and services that have been proven to be effective. • Referrals to HIV/AIDS patient education certification programs • Community based • Facility based • Referrals to substance use treatment programs • Referrals to mental health services • Referrals to community mediation programs Linda Chezem (2010)

11. Alternatives to HIV CriminalizationVerifiable Patient Education • Knowledge of HIV status • Proven reductions in HIV transmission risk behavior following diagnosis of primary HIV infection. • “Several studies postulate that annual HIV transmission rates in the United States are some 3.5 times higher among people with undiagnosed HIV infection compared to those who are diagnosed, due to the fact that knowledge of positive HIV serostatus is associated with substantial decreases in high-risk sexual behaviors among those so diagnosed.” • Source: PLoS Med. 2007;4:e200 • Additional Resource: AIDS. 2006;20:1447–1450 • Additional Resource: J Acquir Immune Defic Syndr. 2005;39:446–453

12. Alternatives to HIV CriminalizationVerifiable Patient Education • Knowledge of disease could have a doubling effect with additional benefits: • An understanding of the disease and of the disease process. • An understanding of rights and responsibilities. • Better coping and decision making skills. • Better health and an improved understanding of how they need to live to continue to have good health. • Improved ability to take control of their lives and live exactly how they want to live. • Impact of HIV on the community in which they live.

13. Alternatives to HIV CriminalizationVerifiable Patient Education • Drawbacks • Cultural competency • Health literacy • Language barriers • Possible Solutions • Peer led sessions in partnership with a public health educator • Evidence based, community directed and patient tailored patient education programs

14. Alternatives to HIV CriminalizationAccess to Substance Use Treatment • Options such as education, outreach and treatment are more beneficial to not just the individual but to their families and society as a whole. In terms of treatment, research indicates that treatment is more cost effective than incarceration. • Treatment rather than incarceration would save money by focusing the underlying causes of habitual use of substances, rather than institutionalize these individuals.

15. Alternatives to HIV CriminalizationAccess to Substance Use Treatment • The link between child sexual abuse and risk for HIV infection has been proposed by several researchers (Caseese, 1993; Paone, 1993; Rosenfeld, 1993; Zierler, 1991), and recent research confirms this link. • Up to 43% of the women enrolled had been sexually abused as children and 45% had been sexually abused as adults (Vlahov, 1996, Cook, 1997). • Childhood sexual abuse was significantly associated with: use of drugs; exchange of sex for drugs, money or shelter; higher number of sexual partners; and having had a sexual relationship with a person at high risk for HIV. Additionally, childhood sexual abuse was significantly related to adult domestic violence as well as adult sexual abuse.

16. Alternatives to HIV CriminalizationAccess to Mental Health Services • Persons infected with HIV/AIDS are at greater risk than non-infected individuals of developing psychopathologies such as depression. The psychosocial factors of denial, stigma and social marginalization, lack of support (from family members, friends, etc.), lack of resources, trauma (current – diagnosis and/or past – abuse and violence) and mortality often influence the onset of depression. • Mental health professionals can help patients harness both emotional and rational strengths in order to communicate effectively with healthcare professionals, gather information, evaluate treatment options, make informed treatment decisions, and manage their condition.

17. Alternatives to HIV CriminalizationAccess to Mental Health Services • One study looked at the impact of post traumatic stress syndrome (PTSD) on patients diagnosed with HIV found that patients with non HIV-related PTSD reported more PTSD and depression symptoms and lower levels of medication adherence. Participants with HIV-related PTSD were more likely to report reliving the trauma but were more adherent to HIV medications than participants with non-HIV-related PTSD. • Results suggest that HIV- and non-HIV-related PTSD have a similar impact on PLWHA and in both cases impact their functioning, adherence to medications, and levels of depression. • Source: http://www.informaworld.com/smpp/content?file.txt

18. Alternatives to HIV CriminalizationAccess to Community Mediation • Community Mediation Programs: • Using a non-adversarial approach, the goal of mediation is to achieve reconciliation through a process which entails addressing the parties' interests and needs, and seeking together a settlement through mutual agreement. • If fault is found, then the offenders must take meaningful responsibility for their actions by mediating a restitution agreement with the victim, to restore the victims' losses, in whatever ways that may be possible. • Restitution may be monetary or symbolic; it may consist of work for the victim, community service or anything else that creates a sense of justice between the victim and the offender.

19. Alternatives to HIV CriminalizationAccess to Community Mediation • Example: Rainbow Mediation • A Program of the Los Angeles Bar Association’s Dispute Resolution Services, Rainbow Mediation provides mediation and facilitation services to the lesbian, gay, bisexual, and transgender communities of Southern California. This service provides the opportunity to settle conflicts outside of court. Typical issues addressed include HIV/AIDS.

20. Contact Information Vanessa Johnson, JD Executive Vice President NAPWA 8401 Colesville Road, Suite 505 Silver Spring, MD 20910 240-247-0880 (main-p); 240-247-1016 (direct) 240-247-0574 (f) vjohnson@napwa.org www.napwa.org