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Reaching the Unreached Service Uptake and Retention Among Marginalized Populations

This workshop aims to understand and address gaps in care for key populations, such as minorities within the majority, in South Africa. The presentation will discuss treatment refusal, risk factors, and the importance of creating programs that address individual, social, and structural factors. The Treatment Ambassador Program will also be highlighted as a potential solution.

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Reaching the Unreached Service Uptake and Retention Among Marginalized Populations

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  1. Reaching the UnreachedService Uptake and Retention Among Marginalized Populations Workshop Wednesday 20th July 11:00am – 12:30pm

  2. Understanding the underserved: Minorities within the majority Ingrid T. Katz, MD, MHS Assistant Professor, Harvard Medical School Associate Physician, Brigham & Women’s Hospital Research Scientist, Center for Global Health, Massachusetts General Hospital

  3. Disclosure • I have no financial conflicts of interest • I receive salary and research support from: • Connors Center for Women’s Health and Gender Biology • Burke Fellowship • Harvard University Center for AIDS Research • National Institute of Mental Health • K23 MH 097667 • R34 MH 10839301

  4. Key points for synergy • Understanding how “Key Populations” may mean different things in different contexts •  “Key” - refers to specific or heightened vulnerabilities and 'risks' in terms of HIV • Ultimately need to create programs and interventions that address this risk/vulnerability through addressing individual / social / structural factors

  5. Goals for this Presentation • Gaps and losses in care throughout the pre-ART and early-ART phases of the continuum in South Africa • Defining this key population: Individuals presenting for testing who do not initiate ART – What is Treatment Refusal • Data from our recent cohort analyses: Defining key populations and discussing risk factors • Where to go from here: The Treatment Ambassador Program

  6. GaPs in care

  7. Treatment Coverage for HIV-infected Individuals in Sub-Saharan Africa by Percent, 2010 Source: Katz IT et al, New Engl and Journal of Medicine, 2013

  8. CD4 Trends in ART Initiation in Sub-Saharan Africa 2002-2013 Siedner M, Ng C, Bassett IV, Katz IT, Bansgberg D, Tsai AC, CID, 2015

  9. Test and Treat Strategy Source: UNICEF, 2014

  10. Defining the key population

  11. 20% of Adults Presentingfor Testing in SowetoRefused Treatment Adults Presenting for Voluntary Counseling and Testing (VCT) in Soweto Source: Katz IT et al, AIDS, 2011

  12. Understanding treatment refusal among adults presenting for HIV-testing in Soweto, South Africa: a qualitative study Katz IT et al, AIDS Behav, 2015

  13. Risks Perceived in Starting Treatment Losing health or beauty “They said, ‘You are HIV positive,’ and I said, ‘I am not HIV positive.’ [...] I told myself that I am beautiful and they say I am HIV positive. Are they sick? I said, no, they are mad. How can they say that? I am very healthy.” − Female, Sustained Refuser

  14. Risks Perceived in Starting Treatment Stigma associated with disclosure “In a rural area, it’s a small place even though you trust the nurses and stuff like that. People who are in the clinic, they know that you go to that door when you are HIV positive. You come in this way, so they will notice, ‘Wow, she is HIV positive.’ So they will start talking.” − Female, Initial Refuser

  15. Risks Perceived in Starting Treatment Increased Financial Burdens “My problem is that sometimes I do not have food to eat at all. How can I take [ARVs] when I don’t have food to eat? So now that means that I will default, but if I knew that I had money then I would take them.” − Female, False Acceptor

  16. Protective Factors Offsetting Risks of Starting Treatment Coping, Resilience and the importance of Social Support “In rural areas, we have fields where there is no one. I went there and wrote a suicidal letter. It was addressed to my grandmother and aunts. But then I thought of people who love me. I thought my teacher wouldn't’t like this. She wouldn't’t be proud of me, because she knows that I am a fighter. I am a hard-worker, and if I do this she will be disappointed. I just cried and cried and then said, let me just pull myself together. I lost my mother. I got shot and survived. So why am I not going to survive this HIV thing?” − Female, Initial Refuser

  17. cohort analysis

  18. Prospective Cohort Study • Determine rates of ART refusal among PLWH at the point of eligibility and over a 6 month period • Assessed modifiable socio-behavioral factors associated with treatment refusal and viral load suppression

  19. Study Sites: Soweto and Gugulethu

  20. Participant Eligibility • Recruitment • 500 ART-eligible participants between July 2014 and June 2015 • ART eligibility changed during study • Pre-Jan 2015: CD4 ≤ 350 cells/mm3 • Jan 2015: CD4 ≤ 500 cells/mm3 • Pregnant women and children excluded

  21. The Theory of Triadic Influence: Informing Measure Selection Domain Measure Outcome • Primary: • Rates of ART Refusal at baseline, 3 months and 6 months • Secondary: • Factors associated with ART refusal • HIV-1 RNA suppression at six months • Self-assessed health • Self-efficacy • Coping skills • Fatalism • Denial Individual Factors Social Factors • Social support • Social norms • Perceived stigma • Access to care • Perceived quality of care • Food insecurity Structural Factors

  22. Study Recruitment 1071 adults presented for VCT and eligible for ART 360 (34%) lost after testing [Median CD4: 194] [IQR: 160–355] 711 (66%) presented for CD4 results [Median CD4: 262] [IQR: 141–372] 500 enrolled in study

  23. Baseline Characteristics

  24. Baseline (point of testing ) • 6.6% of ART-eligible individuals who presented for testing reported they were not planning to start treatment. • Significantly higher odds of fatalistic beliefs

  25. Multivariable Model of Factors Associated ART Refusal at Baseline, stratified by social support (n=483)* * n=483 due to seventeen participants refusal to answer questions on social support, coping, stigma, or fatalism

  26. Treatment Refusal • At 6 months: • 1.8% (n=9) died within 6 months • 44.4% (n=222) had yet to initiate • Verified through the National Health Laboratory Service or clinic records • Perceptions of low ART efficacy was significantly associated with sustained refusal

  27. Viral Load Suppression • Ultimately, only 25% of our cohort (125 participants) were virally suppressed within nine months of learning eligibility. • Participants who refused ART at 6 months were significantly more likely to be unable to suppress their viral load at 9 months (p<0.001)

  28. Long-term outcome • Low rates of viral load suppression among this high-risk key population • Treatment refusal is significantly associated with a lack of viral load suppression

  29. Where to go from here

  30. Treatment Ambassador Program (TAP)

  31. Thank You • David Bangsberg, Glenda Gray, Catherine Orrell, Norma Ware, Laura Bogart, Ingrid Bassett, Janan Dietrich, Marya Gwadz, Garrett Fitzmaurice, Kathy Goggin • From MGH Center for Global Health & the Connors Center for Gender Biology • RAs: Holly Zanoni, Dominick Leone, Ingrid Courtney, Gugu Tshabalala • Funders:NIMH, Burke Family, CFAR, Mike Stirratt (Program Officer) • Participants: From the Republic of South Africa

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