# Presentation: 043345

## HIV Treatment Barriers for African Americans

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

## Agenda

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

## 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.

## 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)

## 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)

## 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)

## 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)

## 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 men’s perceptions of physician competence and support may influence their adherence to protease inhibitors
- (Asch et al., 2001; Siegel et al., 2000)

## 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)

## 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

## 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)

## 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

## Types of Barriers

- External
- Internal(ized)
- Institutional
- Pharmacological

## External Barriers

- Financial
- Insurance
- Access
- Transportation
- Education/literacy

## Financial/Insurance Barriers

- “What I’ve realized is you have to have money.   That’s been my goal, to get a job with insurance.  Because if you don’t have insurance, its like you don’t exist.”  (Manhattan, 33)
- “You can’t afford to take that day’s pay off to see doctor, sit in the office for 3 or 4 hours, and lose that pay.” (Buffalo, 35)

## Internal(ized) Barriers

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

## 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 don’t 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 we’re black, we all have the same face. So when you approach somebody, they think that you’re going to automatically cross them in a very aggressive, intimidating way. You’re black first.” (Atlanta, 33)

## Distrust

- “I see doctors as opportunists. They’re 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, that’s where it came from, monkeys. And the monkeys represent what? Blacks.” (Brooklyn, 45)

## 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, that’s just how you look at it because that’s just it, this big ol’ thing about gayness, its just no.  Just no, no, no.”  (Rochester, 19)

## Racial and Sexual Stereotypes

- “As being a young black male, if I would come and say something’s 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 I’m stereotyped already. And now if you say you’re 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)

## 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 physician’s office, and when I identify myself as a gay person, part of that is looking for acceptance from them.  Because I haven’t gotten it from my family, you know, and the phobia of how they gonna see me because of the way I’ve been seen by my family, or not seen.” (Albany, 40)

## Institutional Barriers

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

## Medical Judgment

- “I was talking to her [the doctor] about the symptoms I was having. And she’s like, she asked me when the last time I had anal sex? And I told her like whenever it was. And she’s like, ‘Well, you know...,’ and this really surprised me, ‘Well, you know, the anus really isn’t made for that.’ And I was like, ‘Yeah, I know, but it’s a little too late.’  You know?” (Manhattan, 33)

## Interpersonal relationship and Adherence

- “My doctor now, I wouldn’t say she’s uncaring, but she’s not that caring either.  She’s like, ‘I wanna put you on medication.’  And I’m like ‘Why? My viral load is undetectable, and my T-cell count is in the 700s.’ And I’m like, ‘No!’  She says, ‘Well, if that’s the way you wanna go, fine. But it’s your life and if you die quicker because of it then don’t 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)

## Communication

- “I think a lot of times it’s just a culture. And a lot of these people [medical providers] might be knowledgeable, but they’re not knowledgeable of the people they’re dealing with.  So they’re generally mechanical.  They know how to do this, they know how to do that, but they don’t know how to deal with you.  They don’t know.”  (Brooklyn, 29)

## Investment in One’s Health

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

## Choice of Access

- “I would rather go to the emergency room than go to my doctor’s office, because I know there I’m seeing the receptionist, the nurse, the doctor, and that’s all.” (Atlanta, 32)

## Pharmacological Barriers

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

## 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

## Outlook for HIV treatment and cure

- Effective HIV vaccine won’t 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?

## Multilevel approach to HIV access, treatment and adherence

- Approach must be on all 4 Levels:

## 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

## 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)

## Acknowledgements

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