Reaching, Linking and Engaging Women in HIV Care

1. Reaching, Linking and Engaging Women in HIV Care Victoria A Cargill, M.D., M.S.C.E. Office of AIDS Research NIH

2. Disclosures of Financial Relationships This speaker has no significant financial relationships with commercial entities to disclose. This speaker will not discuss off-label use or investigational product during the program. This slide set has been peer-reviewed to ensure that there are no conflicts of interest represented in the presentation.

3. Disclosures • Dr. Cargill has no financial disclosures to make and is not referencing any off label use of medications. • During the presentation opinions may be expressed that are those of the presenter and do not reflect the position or policy of the U.S. Department of Health and Human Services nor the National Institutes of Health.

4. Presentation Goals • To discuss the barriers to reaching and engaging women and children in HIV treatment. • To identify the concerns that impact treatment linkage and engagement. • To highlight successful interventions to engage women in HIV care. • To review the types of stigma and its impact on women. • To highlight important examples of these issues with real world cases.

5. Now that we have treatment, why aren’t you in care? Life is a sexually transmitted disease and the mortality rate is one hundred percent.--R. D. Laing

6. Women and HIV infection • Women with HIV infection will be with us for a while. • At some point in her lifetime, 1 in 139 women will be diagnosed with HIV infection. • 1 in 32 black women and 1 in 106 Hispanic/Latina women will be diagnosed with HIV. Source: http://www.cdc.gov/hiv/topics/women/index.htm

7. Teens and HIV infection Young people aged 13–29 accounted for 39% of all new HIV infections in 2009. Young MSM accounted for 65% of the new infections among those age 13 – 29. Those aged 20 – 24 had the highest number and rate of HIV diagnoses in 2009. Age of sexual debut remains around 15 with 46% of high school youth reporting sexual intercourse. Source: http://www.cdc.gov/hiv/youth/index.htm

8. Spectrum of HIV care Engagement Fully in care Gets some medical care Enter care but lost HIV Unaware Aware but not in care Occasion care Gardener et al. CID 2011;52:793.

9. How does this translate? • 15% of those with HIV infection do not know it. • 45 – 55% of HIV infected individuals fail to receive HIV care in any one year. • 83% of NYC patients were in care within 4 YEARS. • About 80% of US HIV infected should be receiving antiretrovirals, yet only 20% do so. • 4 – 6% of individuals receiving ART stop taking it every year. Gardner et al. CID 2011:52; 793.

10. Cascade of care updated - 2009 • In 2009 – estimated 1,148, 200 HIV infected persons living in the U.S. • Estimated 207,600 were unaware (18.1%). • Overall 37% were retained in care*. • 25% of all US HIV infected individuals achieved viral suppression. • HIGHEST rates of retention and suppression were in female IDUs and heterosexuals. Hall I, Frazier E, Rhodes P et al. XIX International AIDS Conference. Abstract FRLBX05

11. Barriers to reaching and engaging women in HIV care Being a woman is a terribly difficult task, since it consists principally in dealing with men. --Joseph Conrad

12. HIV Infection Occurs in a Context Grinding poverty Stigma Extremism Discrimination

13. Barriers to Care Engagement • Poverty • Limited care options in a geographic area • Stigma • Fear • Substance Abuse • Violence • Ignorance • Self hatred – internalized racism, homophobia • Prior trauma, including sexual, physical and psychological abuse

14. Poverty – HIV+ patients more likely to seek preventive dental care if financial barriers are removed. Quality of care – when clients are satisfied with their care they are more likely to return and engage. (J Evid Based Dent Pract. 2012 Sep;12(3):169-70.) Fear – several studies of PCP revealed that testing was not done out of fear of having to respond to a positive test result. Ignorance – Some PCP feared testing for HIV would undermine the patient relationship. Denial – providers routinely did not test teens or the elderly (over 70) making assumptions about risk based upon age and marital status . (J Clin Med Res. 2012;4(4):242-250) What’s the evidence?

15. Trauma: It is estimated that between ¼ to more than ¾ of women living with HIV have experienced abuse. (Roberts and Mann. AIDS Care. 2002; 12(4):377.) Depression: depression is a major predictor of dropping out of care as well as nonadherence. Depression treatment makes a significant difference. (Yun et al. JAIDS. 2005; 38: 432.) Substance abuse: Active substance abuse has been consistently associated with poor adherence and outcomes. (Lucas et al. AIDS. 2002;16:767.) Violence – One case series reported 20.5% of women reported physical harm since their diagnosis much of it attributable to the HIV diagnosis. (Aziz and Smith. CID. 2011; 52 (suppl 2): S231-S237.) Past Experience – many women with HIV infection have long histories of poor treatment and discrimination and fear more of the same and becoming even more marginalized. (Aziz and Smith. CID. 2011; 52 (suppl 2): S231-S237.) What’s the evidence? - 2

16. Case 1. I never expected YOU to have HIV • Stella is 38 y o white female transcriptionist at a large, famous Midwestern tertiary care hospital. • Has one 10 y o son from a prior marriage – states her husband died from hepatitis due to IDU in New Jersey. • Now in a 4 year relationship with a truck driver who has a ‘quick’ temper. • Pregnant with a second child she asks her ob-gyn for an HIV test after reading an article in the waiting room. • He initially declines because of her race but she persists. He tests her and calls her at work with the results saying: “I’ve never treated a white woman with HIV before.”

17. Case 1. I never expected YOU to have HIV • She presents for care and is hysterical in the waiting room. • In the exam room she has a number of questions from testing her son to telling her partner with the “quick temper”. • She says she now believes her husband died of something other than hepatitis. She wants to confront her former mother-in-law but is afraid.

18. Why do you think she is afraid to confront her? • Fear • Stigma • Shame • All of the above

19. Types of Stigma • Self stigma - people living with HIV impose feelings of difference, inferiority and unworthiness on themselves • Often with first diagnosis, worse in setting of little support • Felt stigma - perceptions or feelings towards a group, such as people living with HIV, who are different in some respect • Blatant or subtle it is always value laden, implying the other is “less than”. Can be associated with overt abuse • Enacted stigma - actions fueled by stigma and which are commonly referred to as discrimination • Physical and/or social isolation, being kicked out of a home or family, source of gossip. • In the end the type is irrelevant, the pain is the same.

20. The legacy of stigma "Stigma remains the single most important barrier to public action. It is a main reason why too many people are afraid to see a doctor to determine whether they have the disease, or to seek treatment if so. It helps make AIDS the silent killer, because people fear the social disgrace of speaking about it, or taking easily available precautions. Stigma is a chief reason why the AIDS epidemic continues to devastate societies around the world."1 UN Secretary General Ban Ki Moon Washington Times, August 6, 2008

21. Case 1. Stella learns more • After learning that her son is also HIV + she contacts her former mother in law • She learns her husband died of AIDS and a hepatoma • She calls the provider to say: “ I’m not coming back to that clinic. It’s just for losers.”

22. What type of stigma is Stella experiencing now? • Self stigma • Felt stigma • Enacted stigma • A and B • None of the above

23. Take Home Point “You don’t have to hit me to wound me – your look, your manner, the way you speak to me – it already tells me if you have judged me or not.” -- Cassie – 19 years old PLWH for 6 years

24. Case 2. No one will miss me when I am gone • Ayesha is 27 y o black female nursing assistant, tested HIV + in 1996. • Been in and out of care since then. Lost custody of her children. • At some point diagnosed with schizoaffective disorder and placed on medication. Never returned for follow up mental health care. • Comes to clinic with a cough, short of breath, fever 104, weight loss of 65 pounds. She is so weak the provider carries her to a chair. • She refuses hospital admission, relenting only when her mother appears to insist she go.

25. Case 2. No one will miss me when I am gone • The provider calls the ER to expect the patient. • Four hours later the provider learns the patient had pneumonia and left AMA with antibiotics. • You call the patient and ask why she left the ER and she is noncommittal.

26. Case 2. No one will miss me when I am gone A. Ask the patient to come to your clinic ASAP. B. Also attempt to contact Mom. C. Try to set up social work and mental health support for the patient. D. Try to identify other supports in the patient’s network. E. All of the above F. Other • What are your next steps (or some of them)?

27. Case 2. No one will miss me when I am gone • All of the above • This patient clearly needs prompt medical attention. The diagnosis of pneumonia raises the concern of rapid deterioration. • Additional insight and support will be needed to help her. She is clearly aware (as a nursing assistant) of the risk to her health of leaving the hospital so other forces are at work. • Mom and others may provide additional information that can help engage the patient in care. • Although the patient chose to leave care, the practice can continue to offer her the option of returning. • Ideally a multidisciplinary team is the best approach to identifying her range of needs.

28. Case 2. The Plot Thickens • She returns to the clinic and is clearly worse. • She is readmitted to the hospital and diagnosed with PCP. • While in the hospital you learn that her first child died of SIDs, and one of the twins she bore in a second pregnancy died of sickle cell anemia. • Her loss of custody came after a series of drug binges and charges after the death of the second child. • She is caught ‘tonguing’ medicine, and when confronted says: “No one will miss me when I’m gone.”

29. Case 2. The Plot Thickens • What are your next steps (or some of them)? A. Contact the care team about an urgent psychiatry/pastoral care referral. B. Talk with the patient more about why she thinks she won’t be missed. C. Explore other supports D. Talk with her more about what HIV infection has meant to her E. All of the above F. Other

30. Case 2. The Plot Thickens A. Contact the care team about an urgent psychiatry/pastoral care referral. B. Talk with the patient more about why she thinks she won’t be missed. C. Explore other supports D. Talk with her more about what HIV infection has meant to her E. All of the above F. Other • What are your next steps (or some of them)?

31. Answer: All of the above • This is not a fixed answer but these cases require a great deal of labor intensive intervention: • The patient has a strong faith base so that psychiatry alone may not be helpful, although her ideation and probable depression need to be addressed. • Recall that for women care engagement is closely tied to a relationship with a provider; allowing her time to tell you how she feels is key. • This is going to be a long and rough road. It will require a number of people. When the family meeting was called 47 people showed up and each was asked to do something different to help. • Learning what HIV infection means to her will be essential. This latest disruptive behavior came after she disclosed her status as I had suggested and she was rejected.

32. Successfully engaging women in care

33. Engaging women in care Establishing an environment that is woman centered and responsive (flexible hours, child care on site, multidisciplinary team). Use of peer educators and peer navigators as paid and valuable members of the team. Coordination between medical and social service support teams including assistance with health system navigation.1 1. Enhancing Access to Quality HIV Care for Women of Color   (2007 - 2008)- HRSA and John Snow Institute

34. Facilitating linkage to care Referring patients into care Active linkage into care; specific name, dates and times; active case management referrals may also help. Gardner et al. AIDS 2005;19:423-31 The correlation between missed visits and increased patient death is high. Mugavero et al. CID 2009;48:248-56 Increased HIV testing The CDC recommends opt-out testing for those age 13 – 64. Testing should be done in a routine visit unless the patient specifically refuses testing. Systematic follow up of missed visits Several studies and a recent abstract presented at the AIDS 2012 meeting demonstrate the importance of following up missed visits. Over 1/3 who truly had dropped out returned to care on a follow up contact. Biggest reason for failing to return – the patient felt well. Hall I, Frazier E, Rhodes P et al. XIX International AIDS Conference. Abstract FRLBX05

35. Facilitating linkage to care - 2 Culturally competent and female friendly care Many women with HIV infection have already experienced racism,discrimination and more expecting it to get worse with HIV care. Having culturally competent care is essential. Dionne-Odom et al. 2009. HIV/AIDS In U.S. Communities of Color. Ongoing screening for intimate partner or other violence/abuse, mental health and substance use. This is not a “one and I’m done” Mental health screening has to be done utilizing tools that are culturally appropriate. Beck Depression Index may not be appropriate for all non-Caucasian populations. For example the CES-D (Center for Epidemiologic Studies) Depression scale has been evaluated in Latinos. (Posner et al. Ethnicity and Health 2001.) Screening for violence needs to be on an ongoing basis as the patient circumstances can change. Three brief screening questions have been shown to be good at picking up IPV. (Feldhaus et al. JAMA. 1997;277(17):1357-1361)

36. A word about adolescents

37. Challenges unique to adolescents Access to testing and care – depending upon where they live this can raise the specter of adult notification or being informed of their behavior. Young MSM, especially black MSM have high rates of infection and low rates of awareness. Developmental stage - at this life stage feelings of being immortal and invulnerable can interfere with the ability to fully grasp the seriousness of the infection. Similarly, feelings of shame and fear can lead to hiding infection – including from partners – i.e. nondisclosure. Transitions – one of the most difficult transitions is from pediatric to adult care and where many adolescents are lost in HIV care. It is essential to have a planned transition with checks to ensure that the transition is moving smoothly. As the definition of adolescence has expanded to include up to age 25, many teens can remain in care with their original provider if the practice allows.

38. Looking to the Future

39. More evidence based interventions to improve linkage to care for women and children. Research targeted to identify the most cost effective strategies to improve adherence in women. There are essentially no robust clinical trials of adherence interventions in children. We need them. A frontal assault on stigma – it is the engine that drives a lot of the challenges in HIV care. What is needed

40. Culturally competent and directed care as a standard across the U.S. Evidence based strategies for minimizing self hatred and internalized homophobia and racism. A larger cohort of HIV providers – there will be a shortage of HIV providers by the 4th decade of AIDS. A cure. What is needed - 2

41. Take home points

42. Summary • Multiple factors impact care linkage and engagement for women and children. • A number of social determinants such as poverty, abuse and violence have great impact upon HIV risk, HIV care seeking and remaining in care. • There is no magic bullet for engaging clients in care. It has to be tailored to the patient, often requiring a multidisciplinary approach. • This is a labor intensive and at times emotionally wearing process. • Adolescents are at risk for dropping out of care due to many external factors, as well as the developmental stage of being “immortal”.

43. Whose life will you touch (and change) today?. A thousand words will not leave so deep an impression as one deed. --Henrik Ibsen