Southeast AIDS Training and Education Center Emory University School of Medicine

1

Staff at all study sites

Consumer Caucus

Participants

Trevalle Ambrose and Walter Bradley

2

Study Design

Findings

Challenges & Limitations

Recommendations

Questions 3

1. To assess the care needs of people living with

HIV and AIDS in the Atlanta EMA who are receiving services at Ryan White Part A and non-Part A funded organizations

2. To obtain a comprehensive profile of PLWH/A in the Atlanta EMA and who are receiving services at Part A and non-Part A funded organizations

4

Anonymous and voluntary self-administered survey via QDS computer software and/or interviewer assisted surveys. - Conducted in English and Spanish (interviewer assisted only) - Homebound clients were interviewed by phone - SEATEC staff and two trained peers administered survey/provided assistance

Eligibility Requirements: - At least 18 years of age, HIV positive and a resident of the Atlanta EMA

30-45 minutes to complete

A $10 Kroger gift card was provided

5

715 surveys completed May 2011 – November 2011 15 Part A funded sites

3 non-Part A funded sites or events

6

Extensive participant demographics - Substance Use/Mental Health; Adherence; Incarceration; Testing History; Entry to Care; Co-Morbidities; Housing

Services currently used and needed, gaps in services, and awareness of continuum of care

Structural, Organizational, and Individual-level barriers to services

Basic HIV/AIDS knowledge, perceived discrimination/bias

7

8

The overall sample closely matches the demographics found in both the Epi Profile for the EMA and CAREWare data for 2010.

More than 75% of respondents are residents of either Fulton or DeKalb Counties.

The majority of respondents are over 40 years, with one-third over 50.

African Americans make up the largest proportion of respondents (75%).

There is over-reporting of “heterosexual” as a sexual orientation category

(40%) compared to the epidemiology of the EMA (8%).

This is a very low-income population, with annual income for over 75% below $10,890 per year.

Slightly more than three-fourths of respondents are currently unemployed.

9

68% (n=485)

30% (n=214)

2% (n=16)

0

100

200

300

400

500

600

Male Female Transgender10

11

13% (n=103)

73% (n=536)

3% (n=24)

11% (n=52)

01020304050607080

12

0.0%

10.0%

20.0%

30.0%

40.0%

50.0%

60.0%

0.1% (n=1)

7% (n=50)

17% (n=120)

41% (n=283) 30%

(n=203)

4% (n=29)

0

50

100

150

200

250

300

18 19-29 30-39 40-49 50-59 60+

13

50% (n=359)

40% (n=283)

1% (n=5)

8% (n=59)

0

10

20

30

40

50

60

Heterosexual/Straight

Homosexual -Gay Male

Lesbian Bisexual

14

68% (n=486)

15% (n=109) 5%

(n=38) 3%

(n=22) 0.6% (n=4)

7% (n=53)

0.3% (n=2)

0%

20%

40%

60%

80%

100%

15

1% (n=10)

21% (n=150)

30% (n=213)

33% (n=234)

10% (n=74) 4%

(n=30)

0

50

100

150

200

250

16

Current Employment Status Percent Not working - on full disability 24% (n=167) Not working 22% (n=159) On disability - looking for work 15% (n=110) Not working - seeking work 15% (n=105)

Work part-time (less than 32 hrs per wk) 9% (n=63) Work full-time (32-40 hrs per wk) 7% (n=47) Working part time and on disability 4% (n=25) Retired 3% (n=18) Student/homemaker/volunteer 2% (n=15) Other <1% (n=3)

76% of respondents are unemployed ◦ Of those employed <10% are working full time

17

78% (n=547)

13% (n=91) 4%

(n=28) 3%

(n=19) 1%

(n=9) 0.4% (n=3)

1% (n=9)

0

100

200

300

400

500

600

18

Overall, 51% (n=361), of respondents have some type of health insurance. ◦ Of those insured, nearly 60% have Medicaid

and/or Medicare

19

Health Coverage Percent Medicaid 60% (n=216) Medicare 56% (n=204) Multiple Insurance 18% (n=129) HMO with work 6% (n=20) Private Insurance 4% (n=16) Out-of-pocket/ Fee for service 2% (n=8) Don't Know 2% (n=7) VA 1% (n=5) COBRA 1% (n=4)

Reason Percent

Can't afford it 69% (n=242)

Multiple reasons 23% (n=82)

Don't qualify 19% (n=66)

Don’t know where to get it 15% (n=52)

Previous medical condition denial 10% (n=36)

Not priority at this time 7% (n=25)

Other reason 5% (n=18)

No proof of residency 1% (n=5)

20

21

0.7% (n=5) 0.8% (n=6) 0.8% (n=6) 0.8% (n=6) 1.3% (n=9) 1.8% (n=13) 2.0% (n=14)

4.6% (n=33) 10.5% (n=75)

25.4% (n=181) 26.4% (n=188)

60.8% (n=433)

0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0% 70.0%

Emergency Financial AssistanceVA

RetirementWIC

TANFLife Insurance

OtherSDI

ADAPSSI

SSDIFood Stamps

Top Benefits Received

22

27% (n=191) of respondents were either homeless or unstably housed when completing the survey. Of these, 13% (n=26) were either living in a homeless shelter or on the street.

Regardless of stable or unstable housing, not having money to pay for rent was the top reason for given for not being adherent to medications.

Transgender respondents have higher rates of unstable

housing/homelessness than either males or females.

Latino/Hispanic respondents make up a small percent of the overall sample (3%, n=24) but have highest rate of unstable housing/ homelessness at 35%.

8% (n=55) of respondents have been unstably housed for more than 1 year. 6% (n=41) of respondents had been homeless for 1 to 6 months during the previous year.

23

Overall, 31% (n=223) of participants received help paying for housing at some point in the previous year:

◦ 24% (n=54) - Section 8 ◦ 19% (n=43) - HOPWA ◦ 15% (n=34) - Subsidized/public ◦ 5% (n=12) - HIV/AIDS housing ◦ 12% (n=26) - Getting assistance but unsure of

name ◦ 24% (n=53) - Other form of assistance ◦ 6% (n=14) - Multiple sources of support

24

64% (n=455) of participants indicated a need for housing services at some point during the previous 2 years:

25

Housing Service Needed % of those needing housing service

More than one service 49% (n=223) Help finding housing 39% (n=179) Money for utilities 38% (n=171) Permanent housing 36% (n=163) Rent/mortgage assistance

31% (n=141)

Housing for PLWH/A 27% (n=122) Short-term housing 17% (n=77)

26

27% (n=191) of respondents were in unstable housing or homeless

Housing Interference Stable Housing (n=521) Unstable Housing or Homeless (n=191)

I don't have a safe and/or private room 3% (n=14) 14% (n=26) I don't have a bed to sleep in 2% (n=8) 12% (n=22) I don't have a place to store my medicine 2% (n=10) 12% (n=23) I don't have a telephone where someone can call me 4% (n=21) 10% (n=19) I don't have enough food to eat 13% (n=65) 18% (n=34) I don't have money to pay for rent 13% (n=68) 30% (n=58) I don't have heat and/or air conditioning 3% (n=14) 8% (n=16) I'm afraid of others knowing I have HIV 11% (n=58) 20% (n=39)

27

Length at Residence Percent

Less than one month 10% (n=73)

One to two month 10% (n=70)

Three to six months 15% (n=105)

Six months to one year 18% (n=130)

More than one year 47% (n=336)

28

Live with Other People Percent Other Adults 55% (n=377) Children and Teens 16% (n=116)

Live with Adults (#) %

0 47% (n=337)

1-3 47% (n=335)

4-7 6% (n=42)

Live with Children

(#) %

0 84% (n=597)

1-3 14% (n=102)

4-7 2% (n=14)

29

HIV+ Percent

Partner/wife/husband 64% (n=100)

Other adults – not relatives 60% (n=95)

Adult family member/ relative 34% (n=53)

Children 0 % (n=0)

30

African American males make up the largest proportion of those recently released from a correctional facility (62%, n=50).

Nearly 75% of recently incarcerated respondents received treatment in jail/prison.

The biggest barrier to receiving care after incarceration is perceived lack of insurance or access to insurance.

31

Gender

Percent Incarcerated for at least one

month within the last year (n=80)

Male 81% (n=65) Female 18% (n=14)

Transgender 1% (n=1)

11% (n=80) of respondents have been incarcerated for at least one month during the previous year.

32

Race/Ethnicity Gender Frequency Percent

African-American Male 50 62.5%

Female 8 10.0%

Transgender 1 1.3%

White Male 5 6.3%

Female 2 2.5%

Hispanic Male 1 1.3%

Female 1 1.3%

33

Of those incarcerated, 74% (n=59) reported receiving HIV care in jail/prison.

Post incarceration: ◦ 37% (n=29) - received a supply of HIV medicine to take

with them ◦ 22% (n=17) - received housing information services ◦ 22% (n=17) - received referrals to medical services ◦ 22% (n=17) - received information about other

services ◦ 17% (n=13) - received referrals to case managers ◦ 37% (n=29) - received none of the services listed

above

34

Post incarceration, reasons for not accessing HIV/AIDS care varied: ◦ 87% (n=69) - no insurance/financial issues ◦ 19% (n=15) - did not have a way to get to services ◦ 19% (n=15) - said other reasons prevented HIV care ◦ 16% (n=13) - did not have ID or documentation to

qualify ◦ 10% (n=8) - reported not knowing where to go ◦ 10% (n=8) - had trouble finding people they could

trust ◦ 8% (n=6) - could not get away from drugs or alcohol ◦ 4% (n=3) - did not want anyone to know they had HIV

35

36

Nearly half of all respondents requested a test for HIV and close to a quarter received a test through an ER or other hospital visit.

80% of respondents entered into care within six months of their diagnosis. Of these, 67% entered care within one month.

The top reason why a respondent did not enter care upon diagnosis was that they didn’t feel sick. The next two reasons were depression and fear of disclosure.

37

49% (n=348)

4% (n=27)

23% (n=163)

1% (n=9)

23% (n=161)

1% (n=6)

0%5%

10%15%20%25%30%35%40%45%50%

38

39

Reasons for Getting Tested Percent

Had been feeling sick 40% (n=287)

No particular reason 20% (n=142)

Asked by a provider 11% (n=81) Other (+ partner, mandated - military, incarcerated) 10% (n=70)

Easy access to testing site 5% (n=32)

Involved in sex work 4% (n=30)

Peer pressure from friends 3% (n=24)

Gift or money given for testing 3% (n=22)

Asked by outreach worker 2% (n=13)

Pressure from family members 1% (n=8)

Media campaigns <1% (n=3)

40

0.3% (n=2)

0.3% (n=2)

1.7% (n=12)

3.9% (n=28)

8.4% (n=60)

14.5% (n=104)

66.6% (n=476)

Other

I have chosen not to see a doctor

I have not seen a doctor for my HIV

Six months to one year after

Longer than one year after

Within six months

Within 1 month

41

Why No Care Received Percent Didn’t Feel Sick 29% (n=31) Didn't Want Anyone to Know 23% (n=24) Depression 23% (n=24) Other Reason 21% (n=22) Multiple Reasons 21% (n=22) Didn’t Know Where to Go 15% (n=16) Not Important 6% (n=6) Not Enough Care Providers in Area 6% (n=6) Couldn't Pay 5% (n=5) No Transportation 4% (n=4) Couldn't Get an Appt 2% (n=2) No time off work 2% (n=2)

42

Majority of respondents reported having both a viral lab and CD4 lab done and knowing the results of those tests.

90% of respondents had a primary care visit at least once in the previous six months and 74% report receiving medical care on an ongoing basis.

Nearly 20% of respondents reported they were not on any medication. Of those on medications, most were taking other daily medications in addition to their HIV medication.

79% of all respondents rated their overall health as good to excellent, and only 3% reported their health as poor.

43

95% (n=675) of participants reported having had a CD4 lab and could remember the results ◦ 20% (n=140) - Under 200 ◦ 24% (n=170) – 200 to 350 ◦ 21% (n=148) – 351to 500 ◦ 31% (n=217) - Over 500

5% (n=33) reported never having a CD4 lab

done, or never being told results

44

87% (n=622) of respondents reported having had a viral load lab done and could remember the results: ◦ 65% : Undetectable or below 50 (n=467) ◦ 17% : 50- 55,000 (n=122) ◦ 5%: Over 55,000 (n=33)

13% (n=91) reported not knowing what the

result was, never having the blood work done, or never being told results

45

More than 80% of respondents had their most recent CD4 or viral load done in the last 3 months

46

Time Period Lab Test Percent In the last month CD4 41% (n=293)

Viral Load 43% (n=308) In the last 3 months CD4 43% (n=304)

Viral Load 40% (n=284) In the last 6 months CD4 11% (n=75)

Viral Load 10% (n=70) One year or more CD4 2% (n=17)

Viral Load 1% (n=10) Don't know CD4 3% (n=19)

Viral Load 5% (n=35)

Less than 5% of respondents indicated they had not seen a provider for care

Of those in care, their last medical appointment for HIV was:

Their frequency of care over the last year

47

Less than 6 months ago 90% (n=639)

Six to twelve months ago 4% (n=28)

More than a year ago 2% (n=16)

Never 12% (n=84) Only when I was sick 14% (n=100) On a regular ongoing basis 74% (n=528)

Medication Taking HIV drugs: anti-retrovirals, protease inhibitors 80% (n=489)

Other drugs you take every day (diabetes, cholesterol, high blood pressure)

31% (n=186)

Antidepressants or other mental health drugs 29% (n=179)

Pain or sleep aids 28% (n=173)

Other drugs related to HIV/AIDS 22% (n=134)

Herbal or other over-the-counter products 13% (n=81)

Hormones or steroids 5% (n=33)

Birth control pills 1% (n=6)

Hepatitis C drugs 1% (n=6)

TB Medications 1% (n=4)

48

*14% (n=95) of respondents reported not being on any meds at time of study.

The majority of respondents receive some type of assistance or public/private insurance to pay for HIV and non-HIV related medications.

49

Payer Source ARV/Other Prescribed

Medications

Medicaid 37% (n=264)

ADAP 36% (n=254)

Medicare 32% (n=232)

Self-Pay 12% (n=82)

PAP 12% (n=76)

Private Insurance 6% (n=38)

Other Pays (Pharm. Co., WellCare, etc.) 6% (n=31)

VA 3% (n=21)

50

More than 85% (n=608) of respondents report having their first medical appointment within the first year after diagnosis.

10% (n=71) remain out of care or waited longer than one

year to receive care.

Post diagnosis, 22% (n=156) of respondents report at least one year when they were not in care (Inclusive of those who initially sought and received care).

86% (n=614) of respondents report being on medication for their HIV. Of these, 27% (n=168) report skipping their medications at least once over the previous 30 days

51

52

After being out of care for a year or more, respondents gave the following reasons for returning to care: Got Sicker 44% (n=66) Able to deal with other problems 30% (n=45) Someone helped me 21% (n=32) I had stable housing 19% (n=28) Different drugs available 16% (n=24) New health provider 15% (n=23) Wanted bloodwork 14% (n=21) Multiple reasons to return 9% (n=66) Change in income 9% (n=13) Change in insurance 7% (n=11) Change in attitude of clinic 5% (n=8) Other reasons (Pregnancy, overcame fear, etc.) 5% (n=7)

53

Forgot 47% (n=76)

Ran Out 19% (n=30)

Depressed 18% (n=29)

Side Effects 14% (n=22)

Away From Home 14% (n=22)

Routine Change 14% (n=22)

Cannot Remember 12% (n=20)

54

More than 30% (n=230) of respondents had been diagnosed with a form of Hepatitis. Nearly 40% (n=89) of those diagnosed were referred to a Hepatitis expert.

Self-reported STIs were relatively low.

Hypertension and high cholesterol were the most frequently cited co-morbidities.

55

56

More than 30% (n=230) of respondents had been diagnosed with a form of Hepatitis

◦ Of those diagnosed: Hepatitis A – 6% (n=44) Hepatitis B – 15% (n=108) Hepatitis C – 14% (n=99) ◦ Nearly 40% (n=89) of those diagnosed were

referred to a Hepatitis expert.

57

Diagnosed STI Percent Syphilis 7% (n=47) Herpes 7% (n=51) Genital Warts 2% (n=14) Chlamydia 2% (n=12) Gonorrhea 2% (n=12) Yeast Infection 2% (n=17) Other STIs 1% (n=9)

58

Disease Percent

Hypertension 35% (n=249)

High Cholesterol 23% (n=161)

Neuropathy 23% (n=159)

Arthritis 22% (n=153)

Diabetes 10% (n=72)

Heart Disease 8% (n=55)

Osteoporosis 6% (n=40)

TB 5% (n=36)

Cancer 4% (n=30)

59

After finding out they were HIV positive, 59% (n=419) of respondents reported having received mental health services.

Anxiety and depression were the most common mental health diagnoses post diagnosis.

31% (n=223) reported having received substance abuse services since becoming HIV-positive.

60

61

MH Diagnosis Percent

Depression 45% (n=324)

Anxiety 30% (n=211)

Multiple MH Diagnosis 29% (n=210)

Bipolar Disorder 16% (n=112)

Dementia 2% (n=13)

62

Of all respondents, in the last year:

◦ 2% (n=17) report injecting street drugs ◦ 2% (n=15) report injecting hormones or steroids

Of these, no one reported sharing needles or using a

needle exchange service

63

64

Reasons for Being Self-Managed Percent

Personal preference 63% (n=76)

Screened out of case management 22% (n=25)

Unhappy with the quality of case management being received

17% (n=15)

Self-managed for other reasons 5% (n=5)

73% (n=518)

18% (n=127) 5%

(n=37) 4%

(n=28) 0%

10%

20%

30%

40%

50%

60%

70%

80%

Have a CaseManager

I am self managed Not currently incare

Waiting for firstappointment

65

66

Self-Management Support Percent Knows how to reach a case manager in case of emergency or for additional support

72% (n=92)

Invited to workshops and meetings for self-managed clients 43% (n=55)

Contacted a case manager for an emergent need or to receive services

27% (n=34)

Attended workshops, activities, or meetings for self-managed clients 25% (n=32)

Been contacted by a Case Manager over last 12 months to check-in 23% (n=29)

67

The top 3 gaps in core services are related to dental care and all 4 dental service categories are included in the top 10 gaps in core services.

The top 3 gaps in support services are related to financial needs and food services.

Transgender respondents have the highest 2 gaps recorded: 63% for Dental and 50% for Food Pantry.

Latino/Hispanic respondents have the highest gap in service for Case Management at 18% 68

69

Rank Service Category Percent Utilization

1 Primary/Outpatient Medical Care 95% 2 Case Management 59% 3 1 to 1 or Group MH Counseling 48% 4 Session with a MH Doctor 36% 5 Preventive Dental Care 31% 6 Pharmaceutical Assistance 30% 7 Tx for Dental Problems (Specialty) 29% 8 Emergency Dental Care 23% 9 1 to1 or Group SA Counseling 22%

10 Crisis MH Support 17%

70

Rank Service Category Gap Percent (Need-Received)

1 Tx for Dental Problems (Specialty) 28% 2 Emergency Dental Care 25% 3 Preventive Dental Care 24% 4 Session with MH Doctor 15% 5 1 to 1 or Group MH Counseling 14% 6 Pharmaceutical Assistance 11% 7 Soft Meals 8% 8 Residential SA Treatment 8% 9 Case Management 7%

10 1 to 1 or Group SA Counseling 7%

Rank Service Category Percent Utilization

1 Treatment Advocate/Counselor 48% 2 Housing Information Services 36% 3 Food Pantry 33% 4 Peer Counseling 33% 5 Nutrition Education and Counseling 33% 6 Benefits Counseling 29% 7 Nutrition Supplements 26% 8 Home Delivered Meals 23% 9 EFA for Utilities 19%

10 Food Vouchers 18%

71

Rank Service Category Gap Percent (Need-Received)

1 Food Vouchers 40% 2 EFA for Utilities 22% 3 Food Pantry 19% 4 Legal Services 19% 5 Benefits Counseling 15% 6 Home Delivered Meals 14% 7 Nutrition Education/Counseling 14% 8 Housing Information Services 13% 9 Peer Navigator 11%

10 Peer Counseling 8%

72

Male: Female: TG:

73

Rank Service Gap % 1 Food Vouchers 39% 2 Nutrition Supplements 30% 3 Tx for Dental Problmes 27%

Rank Service Gap % 1 Food Vouchers 44% 2 Tx for Dental Problems 29% 3 Emergency Dental Care 26%

Preventive Dental Care 26%

Rank Service Gap % 1 Tx for Dental Problems 63% 2 Food Pantry 50% 3 Emergency Dental Care

Preventive Dental Care 37%

African American: Latino: White:

74

Rank Service Gap % 1 Food Vouchers 39% 2 Tx for Dental Problems 30% 3 Nutritional Supplements 28%

Rank Service Gap % 1 Nutritional Supplements 39% 2 Food Vouchers 38% 3 Emergency Dental Care 31%

Rank Service Gap % 1 Food Vouchers 42% 2 Preventive Dental Care 33% 3 Legal Services 31%

Young Het.: YMSM:

75

Rank Service Gap % 1 EFA for Utilities 49% 2 Preventive Dental Care 38% 3 Nutritional Supplements 37%

Rank Service Gap % 1 EFA for Utilities 45% 2 Food Vouchers 40% 3 Nutritional Supplements 35%

WCA Persons >50:

76

Rank Service Gap % 1 Food Vouchers 34% 2 EFA for Utilities 29% 3 Tx for Dental Problems

Emergency Dental Care Preventive Dental Care

23%

Rank Service Gap % 1 Food Vouchers 45% 2 Nutritional Supplements

EFA for Utilities 35%

3 Tx for Dental Problems Emergency Dental Care

32%

Self Managed:

77

Rank Service Gap % 1 Nutritional Supplements 39% 2 Emergency Financial Asst. 29% 3 EFA for Utilities 29%

78

79

Individual Barriers : These refer to the individual’s knowledge, physical and mental health.

Organizational Barriers: These are further divided into three types:

1) access: such as transportation or access to specialists 2) sensitivity: how clients feel treated by providers 3) expertise: quality of care by organization and individual provider

Structural Barriers: These are related to insurance,

cost, red tape, rules and regulations, and problems navigating the system of care.

The biggest barrier for all respondents is being unaware that a service is available to them. This barrier is greatest for transgender respondents.

Individual barriers are cited more often for all groups than either structural or organizational.

The least cited barriers are structural barriers.

Young heterosexuals and women more frequently cite fear of exposure of their HIV status as a barrier than all other groups. 80

Transgender respondents cite lack of access to transportation as a barrier more than all other groups. Female respondents cite it the least. Overall, slightly over a third of the total sample cites access to transportation as a barrier.

Lack of health coverage is the most common structural barrier identified by all groups.

Lack of childcare is rated surprisingly low for both female respondents overall and the subgroup of women of childbearing age.

81

Individual % Structural % Organizational % I did not know that a service was available to me.

59% (n=423)

Lack of health insurance coverage.

37% (n=264)

Lack of privacy by the organization to protect my medical chart

27% (n=194)

I did not know where to go to get the service.

56% (n=398)

Reduced services due to funding cuts.

36% (n=254)

Person providing service to me did not seem to know enough.

23% (n=165)

I did not know what medical services I needed.

45% (n=325)

No transportation or access to adequate transportation.

36% (n=257)

Cultural Sensitivity of the organization and person providing services to me.

20% (n=144)

My state of mind or ability to deal with the treatment.

41% (n=291)

The amount of time I had to wait for an appointment.

35% (n=250)

The organization did not refer me to the services I needed.

20% (n=143)

My physical health has not allowed me to travel to where the service is.

41% (n=291)

There is too much paperwork and/or red tape.

32% (n=226)

I did not get along with the people providing services.

20% (n=140)

82

83

Population (%) Gender Male 40% (n=192)

Female 26% (n=55) Transgender 63% (n=10)

Race African American 35% (n=189) Hispanics 29% (n=7) Caucasian 37% (n=38)

Special Populations Young Heterosexuals 34% (n=10) Young MSM 48% (n=31) Women of Childbearing Age 32% (n=25) Persons Older than 50 31% (n=72)

Self Managed 13% (n=16) All Respondents 35% (n=252)

First time using QDS System, can’t control for personal bias and comprehension.

Undersample of transgender and Latino/Hispanic respondents.

Data collected is based on respondent’s perceived need, not objective criteria.

84

Conduct a supplemental study focused on transgender identified clients and Latino/Hispanic clients.

Highest ranked barrier is related to unfamiliarity with the continuum of care, suggesting a need for increased communication by providers of available services.

Dental services capacity should be addressed by the Planning Council.

85

Questions?

86