HIV Treatment Barriers for African Americans

1
HIV Treatment Barriers for African Americans

• David Malebranche, MD, MPH
• Assistant Professor
• Emory Division of Medicine

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Agenda

• Health Disparities and HIV treatment and African
  Americans
• Barriers to treatment Voices from a
  marginalized community
• Conclusions
• Policy Implications/Future Directions
• Discussion/Questions

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Institute of Medicine Report Unequal
Treatment (March, 2002)

• Over 100 studies reviewed on racial treatment
  disparities
• Minorities less likely to receive needed services
  and procedures than whites, even when controlling
  for socioeconomic status, age, gender, access,
  etc.

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Why the Disparity?

• Institutional fragmented healthcare, cost
  incentives, time constraints
• Individual variation in individual response,
  help-seeking behavior, attitude, distrust
• Interpersonal provider bias, stereotyping,
  uncertainty
• (Institute of Medicine Report, 2002)

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Interpersonal Barriers and Health

• Interpersonal aspects of care, particularly the
  patient-provider relationship, are important to
  minority patients and women
• (Cargill, Stone Robinson, 2004 Mostashari et
  al., 1998 Stone et al., 1998)

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HIV treatment and African Americans

• Reductions in AIDS mortality among African
  Americans have not equaled that of White
  Americans despite the introduction of Highly
  Active Antiretroviral Therapy (HAART)
• African Americans with HIV/AIDS utilize less
  outpatient, and more inpatient care than their
  white counterparts, even when controlling for
  insurance and socio-
• economic status
• (Chaisson, Keruly Moore, 1995 Shapiro et al.,
  1999 Kass and
• Flynn, 1999 Hellinger and Flesihman, 2001 HIV
  research network, 2002)

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Physician bias and HIV

• Physician perceptions of African Americans as
  less educated, less intelligent and less pleasant
  influence their expectations of these patients to
  engage in risk behavior and follow medial advice
• (Bird Bogart, 2001 Bogart et al., 2001 van
  Ryn and Burke, 2000)

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Physician and patient expectations and HIV
treatment

• Physicians predictions that African American men
  are less likely to adhere to HAART influences
  their treatment decisions
• HIV positive black mens perceptions of physician
  competence and support may influence their
  adherence to protease inhibitors
• (Asch et al., 2001 Siegel et al., 2000)

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HIV outcomes and African Americans

• Heavy reliance on inpatient and emergency room
  (ER) facilities lead to worse HIV health
  outcomes, while increased outpatient support and
  ancillary services lead to improved adherence,
  increased clinic retention rates and decreased
  hospital admission rates
• (Magnus et al., 2001 Montgomery et al., 2002
  Welch Morse, 2001 Fiscella et al., 2002)

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Qualitative Research Methods

• 8 Focus Groups
• 81 self-identified Black men who have sex with
  men (MSM)
• Atlanta, NYC and Upstate NY
• NYC Dept. of Health, Columbia University and New
  York State Black Gay Network
• Support from AIDS Education Training Center
  (AETC)
• Published in the Journal of National Medical
  Association, Jan 2004

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Why Black MSM?

• Initial diagnosis of HIV among MSM ages 13-24
  Black 16, Latino 13 and White 9 (MMWR 1/14/01)
• Among MSM ages 23-29
• HIV prevalence (all cases) among Black men was
  32
• HIV incidence (new cases) among Black men was
  14.7) (MMWR 6/1/01)
• Among 84 North Carolina male college students
  with newly diagnosed HIV, 73 (87) were Black
  (North Carolina Dept. of Health, 2004)

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Study Objectives

• Explore the perceived barriers to healthcare
  among Black MSM
• Describe the healthcare experiences of Black MSM
• Describe the factors impacting adherence and
  healthcare utilization among this population

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Types of Barriers

• External
• Internal(ized)
• Institutional
• Pharmacological

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External Barriers

• Financial
• Insurance
• Access
• Transportation
• Education/literacy

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Financial/Insurance Barriers

• What Ive realized is you have to have money.
  Thats been my goal, to get a job with insurance.
  Because if you dont have insurance, its like
  you dont exist. (Manhattan, 33)
• You cant afford to take that days pay off to
  see doctor, sit in the office for 3 or 4 hours,
  and lose that pay. (Buffalo, 35)

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Internal(ized) Barriers

• Racism
• Sexual Prejudice
• Fear
• Distrust
• Mental Health
• Substance and alcohol abuse

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Racial Stress

• Being a black man is a hard struggle. Not just
  being gay, being straight being a general black
  man is an everyday struggle. I dont care how you
  put it, white America either wants me in a cell
  or a grave. (Rochester, 21)
• We black men have to wake up in the morning
  and put on armour every day. (Rochester, 20)
• Because were black, we all have the same face.
  So when you approach somebody, they think that
  youre going to automatically cross them in a
  very aggressive, intimidating way. Youre black
  first. (Atlanta, 33)

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Distrust

• I see doctors as opportunists. Theyre like
  legal hustlers. Just legal drug dealers.
  (Rochester, 21)
• The same way you look at your shoes right with
  left is how they doctors look at gays. Gays is
  AIDS. AIDS is a monkey. In the dark understanding
  of the virus itself, thats where it came from,
  monkeys. And the monkeys represent what? Blacks.
  (Brooklyn, 45)

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Sexual Prejudice

• In school you got peer pressure. Everything, a
  lot of it revolves around sexuality. Oh, he
  dress gay! Oh, he talk gay! Oh, he look gay!
  You know, so when you go to the doctor and he
  asks you, Ok, have you had sexual., No! I
  mean, thats just how you look at it because
  thats just it, this big ol thing about gayness,
  its just no. Just no, no, no. (Rochester, 19)

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Racial and Sexual Stereotypes

• As being a young black male, if I would come and
  say somethings wrong with me. They medical
  providers would say, Oh, look at this, you know
  they probably just hip-hoppin and screwin down
  and you know, smokin the blunts, and then he
  gonna come here, talkin about he sick. So its
  like Im stereotyped already. And now if you say
  youre gay, everybody can get the picture of the
  feminine, gay brother. So I guess it can come to
  the sexuality because they feel, Oh, you must
  have been loose in the booty already. (Harlem,
  19)

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Medical expectations

• A doctor deals with people from all walks of
  life. So you expect them to be understanding and
  professional. (Harlem, 28)
• When I go into a physicians office, and when I
  identify myself as a gay person, part of that is
  looking for acceptance from them. Because I
  havent gotten it from my family, you know, and
  the phobia of how they gonna see me because of
  the way Ive been seen by my family, or not
  seen. (Albany, 40)

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Institutional Barriers

• Clinic stigma
• Scheduling/Waiting times
• Rushed atmosphere
• Multiple Personnel
• Confidentiality
• Impersonal healthcare workers

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Medical Judgment

• I was talking to her the doctor about the
  symptoms I was having. And shes like, she asked
  me when the last time I had anal sex? And I told
  her like whenever it was. And shes like, Well,
  you know, and this really surprised me, Well,
  you know, the anus really isnt made for that.
  And I was like, Yeah, I know, but its a little
  too late. You know? (Manhattan, 33)

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Interpersonal relationship and Adherence

• My doctor now, I wouldnt say shes uncaring,
  but shes not that caring either. Shes like, I
  wanna put you on medication. And Im like Why?
  My viral load is undetectable, and my T-cell
  count is in the 700s. And Im like, No! She
  says, Well, if thats the way you wanna go,
  fine. But its your life and if you die quicker
  because of it then dont come crying to me. And
  she filled out a medical form for me and said,
  Refuses to take medications in big letters!
  That pissed me off! (Brooklyn, 32)

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Communication

• I think a lot of times its just a culture. And
  a lot of these people medical providers might
  be knowledgeable, but theyre not knowledgeable
  of the people theyre dealing with. So theyre
  generally mechanical. They know how to do this,
  they know how to do that, but they dont know how
  to deal with you. They dont know. (Brooklyn,
  29)

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Investment in Ones Health

• Make me feel that its a positive enough process
  that I will work towards doing my part in it.
  Because if Ive been turned off then I dont want
  to hear anything, and I will probably act in a
  manner thats not in my own self-interest because
  Ive been turned off by the whole experience.
  Whereas if I feel that someone else cares, thats
  the kind of like encouragement for me to really
  invest in myself better. (Manhattan, 60)

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Choice of Access

• I would rather go to the emergency room than go
  to my doctors office, because I know there Im
  seeing the receptionist, the nurse, the doctor,
  and thats all. (Atlanta, 32)

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Pharmacological Barriers

• Access
• Cost
• Pill burden
• Pill timing
• Side effects
• Resistance
• Few long term efficacy studies

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Conclusions

• Barriers to HIV treatment are multidimensional
  for African Americans
• Culture of medicine as a barrier
• Importance of the doctor-patient relationship
• Findings specific, but not exclusive to Black MSM
• Blaming the victim not the answer

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Outlook for HIV treatment and cure

• Effective HIV vaccine wont be ready until
  2009-2010
• Despite advances in treatment, African Americans
  still suffer disproportionate morbidity and
  mortality rates
• What can we do in the meantime?

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Multilevel approach to HIV access, treatment and
adherence

• Approach must be on all 4 Levels

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Research, Program and Policy Implications

• External
• Establish a national health care system
• Increase Ryan White and ADAP funding
• Internal(ized)
• Fund more research on social context of HIV and
  its impact on healthcare utilization and
  treatment
• Fund gender and culture-specific social
  empowerment health initiatives (Project
• Brotherhood)
• Hiring and retention of more mental health
  providers at HIV-related CBOs and medical
  facilities

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Policy Implications (continued)

• Institutional
• Support partnerships between academic centers
• and community and faith-based organizations
• Fund innovative health and community programs
• Recruitment of more representative physicians
• Fund cultural competency programs for ALL
• medical staff
• Pharmacological
• Develop more tolerable, simple medication
  regimens
• Programs targeting patient facilitators of
  adherence
• Support Microbicide development (Phase I studies
  now)

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Acknowledgements

• New York City Department of Health
• Mailman School of Public Health
• John Peterson, Robert Fullilove, William
  Stackhouse
• NYS Black Gay Network