talk 5 6 07

Challenges To Optimal HIV Treatment And Care: 

Challenges To Optimal HIV Treatment And Care Jennifer Sayles, MD, MPH UCLA CARE Clinic UCLA Division of General Internal Medicine

Survival of HIV+ Persons in US: 

Survival of HIV+ Persons in US National HIV Research Network data used to build model to predict survival Full adherence with US treatment guidelines lead to 9.6 years of life lost for HIV+ compared to HIV- persons An additional 5.1 years of life lost due to: late ART initiation premature ART discontinuation Losina et al. CROI 2007, Los Angeles

Gender and Race Disparities in Survival With HIV: 

Gender and Race Disparities in Survival With HIV Survival losses for Latino/a and African Americans lose 1.5 yrs compared to Whites Women of color have largest survival losses 2.5 yrs compared to White women Survival losses for women of color due to higher rates of premature ART discontinuation Losina et al. CROI 2007, Los Angeles

What barriers may exist to HIV treatment?: 

What barriers may exist to HIV treatment? Structural Barriers: Access to good medical care Insurance Transportation Poverty Social Barriers: Care-giving responsibilities (putting others first) Fear of stigma and discrimination Disclosure concerns

What barriers may exist to HIV treatment?: 

What barriers may exist to HIV treatment? Structural Barriers: Access to good medical care Insurance Transportation Poverty Social Barriers: Care-giving responsibilities (putting others first) Fear of stigma and discrimination Disclosure concerns

Social Stigma Affects People With HIV/AIDS: 

Social Stigma Affects People With HIV/AIDS HIV testing Accessing medical services and medications Disclosing to family and friends Social isolation / loss of social support

Stigma Affects Health Outcomes: 

Stigma Affects Health Outcomes Antiretroviral Therapy (ART) Use and adherence HIV symptoms Depression Health related quality of life Access to medical care

What we don’t know about stigma: 

What we don’t know about stigma How and why does stigma affect health for people living with HIV Few studies in women and minorities Valid measures of stigma needed Few interventions target stigma

Goals of Study: 

Goals of Study To identify the perceptions and experiences of stigma and how it affects health and healthcare among HIV positive women and minorities in Los Angeles, CA. To better understand the process of stigma in order to develop effective interventions to reduce it

Focus Groups: 

Focus Groups Seven focus groups 4 female groups (n=26): 3 English/1 Spanish; Bilingual Latina female moderator 3 male groups (n=22): all English; African American male moderator Gender specific groups sensitive topic allows comparison between women and men Mixed race/ethnicity

Slide11: 

Focus Group Participant Characteristics

Results: Key Aspects of Stigma: 

Results: Key Aspects of Stigma We can describe the process of stigma in 4 key domains: Blame and Stereotypes Fear of Contagion Disclosure concerns Social relationships

Slide13: 

Public Attitudes about HIV/AIDS Blame and Stereotypes Fear of Contagion Framework of HIV Related Stigma

Slide14: 

Public Attitudes about HIV/AIDS Blame and Stereotypes Fear of Contagion ‘Spoiled Identity’ Framework of HIV Related Stigma

Slide15: 

Public Attitudes about HIV/AIDS Blame and Stereotypes Fear of Contagion Denial/Social Isolation ‘Spoiled Identity’ Framework of HIV Related Stigma

Slide16: 

Public Attitudes about HIV/AIDS Blame and Stereotypes Fear of Contagion Denial/Social Isolation ‘Spoiled Identity’ Disclosure Social Relationships Social Re-integration Framework of HIV Related Stigma

Slide17: 

Public Attitudes about HIV/AIDS Blame and Stereotypes Fear of Contagion Denial/Social Isolation ‘Spoiled Identity’ Disclosure Social Relationships Social Re-integration Framework of HIV Related Stigma

Slide18: 

Public Attitudes about HIV/AIDS Blame and Stereotypes Fear of Contagion Denial/Social Isolation ‘Spoiled Identity’ Disclosure Social Relationships Social Re-integration Framework of HIV Related Stigma

Blame and Stereotypes: 

Blame and Stereotypes “I really resent that everyone asks how I got HIV. If I got it from a transfusion I am the victim, but if I got it from sex I have scarlet letters on my chest…”African American female Sub-domain: Assigning blame

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Public Attitudes about HIV/AIDS Blame and Stereotypes Fear of Contagion Denial/ Social Isolation ‘Spoiled Identity’ Disclosure Social Relationships Social Re-integration Framework of HIV Related Stigma

Fear of Contagion: 

Fear of Contagion “I thought I’m not going to be able to hug them [my daughters], or kiss them anymore” Latina female Sub-domain: Transmitting to loved ones

Fear of Contagion: 

Fear of Contagion “I thought I’m not going to be able to hug them [my daughters], or kiss them anymore” Latina female “My partner will take food off my plate that I took a bite [of] and it really makes me feel good that he is supporting me” White male Sub-domain: Fear of transmitting to loved ones

Fear of Contagion: Healthcare: 

Fear of Contagion: Healthcare “I got a nurse who actually put a mask over her face and double gloves and all she was doing was taking my blood pressure…” African American male Sub-domain: Public fears of infection

Slide24: 

Public Attitudes about HIV/AIDS Blame and Stereotypes Fear of Contagion Denial/ Social Isolation ‘Spoiled Identity’ Disclosure Social Relationships Social Re-integration Framework of HIV Related Stigma

Negotiating Disclosure: Healthcare: 

Negotiating Disclosure: Healthcare “Of course stigma has affected my healthcare because sometimes I have to go to just any emergency hospital and I am reluctant to share my status. Therefore, I put myself at risk because I can’t tell [them] ... I am taking 15 medications for my HIV.” African American female Sub-domain: Deciding whom to trust

Negotiating Disclosure: Healthcare: 

Negotiating Disclosure: Healthcare “One of the things about HIV, because of the meds, is that you can tell by looking. One of the side effects is lipodystropy/lipoatrophy and so it shows. The stigma is right there. You don’t have [the] ... choice of disclosing or not. If that happens I don’t think it’s worth taking the meds…” African American male Sub-domain: Being “outed”

Slide27: 

Public Attitudes about HIV/AIDS Blame and Stereotypes Fear of Contagion Denial/Social Isolation ‘Spoiled Identity’ Disclosure Social Relationships Social Re-integration Framework of HIV Related Stigma

Social Relationships: Healthcare: 

Social Relationships: Healthcare “When you go to an HIV clinic their whole concentration [is] on how they can give the best care to any patient who comes in with AIDS. … they are compassionate and genuinely concerned .... You may not get that warmth or acceptance at a regular clinic. They don’t want to help you because they have their fears, their stereotypes that interfere with giving the best care.” African American male Sub-domain: Safe and unsafe places

Content Unique to Women: 

Content Unique to Women Domain: Social Relationships “We don’t want to complicate the children’s lives and we try anything in motherhood to protect our children from our HIV status” Latina female Sub-domain: Protecting children

Content Unique to Women: 

Content Unique to Women Domain: Social Relationships - Healthcare “My doctor said you need to get your tubes tied because you cannot produce any offspring if you are going to contaminate them. That was it, no conversation…” White female Sub-domain: Loss of reproductive choice

Content Unique to Women: 

Content Unique to Women Domain: Social Relationships “I cut myself off from men. I have not had a relationship in I don’t know how long. I used to blame men. I hated them after I found out. It got so bad that I couldn’t even stand my own two brothers, and you know, I had to realize it wasn’t their fault.” African American female Sub-domain: Disappointment in men

Empowerment: 

Empowerment “What I did was I empowered myself by disclosing. I went on TV, radio, talk shows…I did a press conference with activists and famous people and I just went public with my whole life and I felt like a sense of freedom and I gained my power…Right now there is no way I can get rid of this virus, so I must learn to live with it. I am going to live in this world whether you like me or not. This is my world.” African American female

Conclusions: 

Conclusions Identified experiences of stigma relevant to HIV+ women and people of color Used data to develop patient centered survey to better understand how stigma may affect health Developed framework to understand process of stigma to inform future intervention work

Next Step: Survey: 

Next Step: Survey Examine relationship b/n stigma and health Recruitment sites: T.H.E. Clinic UCLA CARE Clinic HIV Community organizations

Next Step: Interventions: 

Next Step: Interventions Developing intervention to address stigma and disclosure concerns for women with HIV Group based intervention delivered by HIV+ woman Goals: to address barriers of stigma and disclosure concerns among HIV+ women with goal of optimizing HIV treatment and care.

Acknowledgements: 

Acknowledgements SCIENTIFIC COLLABORATORS: Billy Cunningham MD, MPH, Gery Ryan, PhD, Junell Silver, PhD, Ron Hays, PhD, Catherine Sarkisian, MD, MSHS, Mitch Wong, MD, PhD, Judy Currier, MD, MPH, Tom Coates, PhD COMMUNITY COLLABORATORS: Donna Davis-King, PhD, Monica Foster, Erika Hayes, Deon Claiborne, Lourdes Carranza, Cynthia Davis, PhD, Ardis Moe, MD, Margrit Carlson, MD, David Martins, MD, Elaine Williams, PhD, Alicia Avalos, Carrie Broadus

Slide37: 

“No progress will be achieved by being timid, refusing to face unpleasant facts, or prejudging our fellow human beings -- still less by stigmatizing people living with HIV/AIDS.  Let no one imagine that we can protect ourselves by building barriers between "us" and "them".  In the ruthless world of AIDS, there is no us and them.  And in that world, silence is death.” Kofi Annan UN Secretary General December 1, 2002