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In the United States, an estimated two-thirds of persons with human immunodeficiency virus (HIV) infection do not achieve viral suppression, including those who have never engaged in HIV care and others who do not stay engaged in care. Persons with an unsuppressed HIV viral load might experience poor clinical outcomes and transmit HIV.
The goal of the Re-engaging Surveillance-identified Viremic Persons (RSVP) project in San Francisco, CA, was to use routine HIV surveillance databases to identify, contact, interview, and reengage in HIV care persons who appeared to be out of care because their last HIV viral load was unsuppressed. We aimed to interview participants about their HIV care and barriers to reengagement.
Using routinely collected HIV surveillance data, we identified persons with HIV who were out of care (no HIV viral load and CD4 laboratory reports during the previous 9-15 months) and with their last plasma HIV RNA viral load >200 copies/mL. We interviewed the located persons, at baseline and 3 months later, about whether and why they disengaged from HIV care and the barriers they faced to care reengagement. We offered them assistance with reengaging in HIV care from the San Francisco Department of Public Health linkage and navigation program (LINCS).
Of 282 persons selected, we interviewed 75 (26.6%). Of these, 67 (89%) reported current health insurance coverage, 59 (79%) had ever been prescribed and 45 (60%) were currently taking HIV medications, 59 (79%) had seen an HIV provider in the past year, and 34 (45%) had missed an HIV appointment in the past year. Reasons for not seeing a provider included feeling healthy, using alcohol or drugs, not having enough money or health insurance, and not wanting to take HIV medicines. Services needed to get to an HIV medical care appointment included transportation assistance, stable living situation or housing, sound mental health, and organizational help and reminders about appointments. A total of 52 (69%) accepted a referral to LINCS. Additionally, 64 (85%) of the persons interviewed completed a follow-up interview 3 months later and, of these, 62 (97%) had health insurance coverage and 47 (73%) reported having had an HIV-related care appointment since the baseline interview.
Rather than being truly out of care, most participants reported intermittent HIV care, including recent HIV provider visits and health insurance coverage. Participants also frequently reported barriers to care and unmet needs. Health department assistance with HIV care reengagement was generally acceptable. Understanding why people previously in HIV care disengage from care and what might help them reengage is essential for optimizing HIV clinical and public health outcomes.
In the United States, an estimated two-thirds of persons living with human immunodeficiency virus (HIV) infection do not achieve viral suppression, including both those who have never engaged in HIV care and those who linked to HIV care after diagnosis but did not stay engaged [
Retention in HIV care has been studied in surveillance registries [
The goal of the Re-engaging Surveillance-identified Viremic Persons (RSVP) project in San Francisco was to use routine HIV surveillance databases to identify, contact, interview, and reengage persons living with HIV infection who appeared to be out of care because their last HIV viral load was unsuppressed. We interviewed participants about their HIV care patterns and barriers to reengagement. Understanding why people disengage from HIV care and what would help them reengage is essential for optimizing HIV clinical and public health outcomes.
RSVP began on April 20, 2012 for a 12-month period. Our project methods and implementation, including success in locating truly viremic out-of-care persons, have been previously described [
The characteristics of the 75 (26.6%) interviewed participants were broadly representative of the 282 eligible persons [
Baseline characteristics of interviewed Re-engaging Surveillance-identified Viremic Persons (RSVP) participants, San Francisco, 2012-2013 (n=75).
Characteristics | Median (IQRa) or n (%) | ||
Median (IQR) | 45 (37-51) | ||
<30, n (%) | 5 (7) | ||
30-44, n (%) | 31 (41) | ||
≥45, n (%) | 39 (52) | ||
Male | 64 (85) | ||
Female | 10 (13) | ||
Transgender | 1 (1) | ||
Gay or homosexual | 52 (69) | ||
Straight or heterosexual | 12 (16) | ||
Bisexual | 9 (12) | ||
Questioning | 1 (1) | ||
Queer | 1 (1) | ||
United States | 58 (77) | ||
Puerto Rico | 1 (1) | ||
Mexico | 5 (7) | ||
Other | 11 (15) | ||
San Francisco | 56 (75) | ||
Other | 19 (25) | ||
Non-Hispanic white | 32 (43) | ||
Non-Hispanic black | 20 (27) | ||
Non-Hispanic Asian/Pacific Islander | 2 (3) | ||
Hispanic/Latino | 20 (27) | ||
Other | 1 (1) | ||
High school, General Equivalency Diploma, or less | 22 (29) | ||
Some technical or college training | 30 (40) | ||
College degree or more | 23 (31) | ||
Person’s own house or apartment | 43 (57) | ||
Someone else’s house or apartment | 16 (21) | ||
Single room, rented room, motel, single-room occupancy | 11 (15) | ||
All other (shelter, transitional housing, homeless) | 5 (7) | ||
Working full-time or part-time | 25 (33) | ||
Unemployed, laid off, looking for work | 25 (33) | ||
Disabled (receiving disability income) | 16 (21) | ||
Other | 3 (4) | ||
Missing data | 6 (8) | ||
Yes | 2 (3) | ||
No | 73 (97) | ||
Yes | 64 (85) | ||
No | 11 (15) | ||
Yes | 19 (25) | ||
No | 45 (60) | ||
Not applicable (not sexually active) | 11 (15) | ||
Yes | 18 (24) | ||
No | 55 (73) | ||
Missing data | 2 (3) | ||
Powder cocaine | 12 (16) | ||
Crack cocaine | 14 (19) | ||
Poppers | 20 (27) | ||
Heroin | 5 (7) | ||
Methamphetamine | 27 (36) | ||
Prescription drugs or painkillers without a prescription | 16 (21) | ||
Daily or weekly | 15 (20) | ||
Monthly or less | 21 (28) | ||
Never | 39 (52) | ||
Yes | 67 (89) | ||
No | 8 (11) | ||
Yes | 44 (59) | ||
No | 30 (40) | ||
Missing data | 1 (1) | ||
<5 | 24 (32) | ||
5-20 | 38 (51) | ||
>20 | 13 (17) | ||
Yes | 59 (79) | ||
No | 11 (15) | ||
Missing data | 5 (7) | ||
Yes | 67 (89) | ||
No | 5 (7) | ||
Missing data/don’t know | 3 (4) | ||
Yes | 59 (79) | ||
No | 16 (21) | ||
Yes | 45 (60) | ||
No | 30 (40) | ||
Yes | 34 (45) | ||
No | 39 (52) | ||
Missing data | 2 (3) | ||
Yes | 71 (95) | ||
No | 4 (5) | ||
Yes | 34 (45) | ||
No | 41 (55) | ||
Yes | 40 (53) | ||
No | 35 (47) | ||
Yes | 52 (69) | ||
No | 21 (28) | ||
Missing | 2 (3) |
aIQR: interquartile range.
bHIV: human immunodeficiency virus.
A total of 67 (89%) reported current health insurance or coverage, 59 (79%) had ever been prescribed HIV medications, and 45 (60%) reported current medication use. In the past year, 59 (79%) had seen an HIV provider for medical care, and 67 (89%) reported a CD4 cell count or viral load test. For the 11 (15%) participants who had not seen an HIV provider in the past year, the frequently reported reasons included feeling healthy (n=6), drinking alcohol or using drugs (n=5), not having enough money or health insurance (n=4), and not wanting to take HIV medicines (n=4).
Nearly half (45%) reported missing an HIV medical care appointment in the past year (
The 30 (40%) participants who reported not currently taking medications to treat HIV were similar in their characteristics to the overall interviewed population: 24 were men, 25 had current health insurance or coverage, 20 had seen an HIV provider for medical care in the past year, and 23 expressed interest in meeting with LINCS staff. Overall, the most frequently reported services used in the past year were HIV education or information, public benefits support, HIV case management, financial assistance, and spiritual support (
Services used, and services that were needed but not used, among the Re-engaging Surveillance-identified Viremic Persons (RSVP) project participants at baseline, San Francisco, 2012-2013 (n=75).
Services in the past 12 months | Used, n (%) | Unmet needa: did not use the service but needed it, n (%) |
Dental services | 23 (31) | 35 (67)b |
Mental health services, including one-to-one counseling | 19 (25) | 28 (50)b |
Transportation assistance | 19 (25) | 26 (46)b |
Practical support (bills, buddy program, help with cleaning) | 12 (16) | 25 (40) |
Financial assistance | 28 (37)b | 23 (49)b |
Legal services | 13 (17) | 22 (35) |
Shelter or housing services | 8 (11) | 21 (31) |
HIVc case management services | 29 (39)b | 20 (43)b |
Drug or alcohol counseling or treatment | 13 (17) | 18 (29) |
Meal or food services | 25 (33) | 16 (32) |
HIV peer group support | 15 (20) | 16 (27) |
Public benefits, including Supplemental Security Income or Social Security Disability Insurance | 34 (45)b | 15 (37) |
Spiritual support | 27 (36)b | 14 (29) |
Domestic violence services | 4 (5) | 10 (14) |
Education or information about HIV | 39 (52)b | 6 (17) |
Interpreter services | 0 (0) | 1 (1) |
Childcare services | 1 (1) | 0 (0) |
Any other HIV-related services | 6 (8) | 3 (4) |
aOrdered by highest count; percentage calculated among those who did not use a service in past 12 months.
bThe top 5 most frequently used services, and the top 5 most frequently needed services (unmet needs).
cHIV: human immunodeficiency virus.
Of the participants, 52 (69%) accepted referral to LINCS; their linkage outcomes were previously published [
Of the 75 participants, 64 (85%) completed the 3-month follow-up interview. Among the 64, 97% (n=62) had health insurance or coverage, 73% (n=47) reported having “seen a doctor, nurse or other health care provider for HIV medical care” since baseline interview, 81% (n=52) reported having a CD4 cell count test, 77% (n=49) had an HIV viral load test, and 47% (n=30) were prescribed HIV treatment. HIV risk behaviors since the baseline visit included using “any drugs that were not prescribed by a doctor” (n=30, 47%,) and injecting drugs that were not prescribed (n=9, 14%). A total of 33 (52%) reported vaginal or anal sex, including 7 (11%) who reported condomless vaginal or anal sex with an HIV-negative or unknown-status partner.
The RSVP project sought to identify a high-priority population of persons living with HIV who appeared to be out of care and viremic based on HIV surveillance data. However, the majority of interviewed participants reported both having seen an HIV provider in the past 12 months and having health insurance, thus having means and opportunity to access the HIV care needed to achieve viral suppression. The frequent self-reported care engagement was corroborated by HIV surveillance data: over 80% had at least one viral load or CD4 cell count test during the 12 months after they met RSVP project eligibility [
Nevertheless, RSVP participants identified personal and structural barriers to HIV care and many unmet needs. Almost half reported missing a scheduled medical appointment in the previous year, and 40% reported no current HIV treatment. Deficits in comprehensive health care and social support included unmet needs for legal services, dental care, transportation assistance, mental health services, financial assistance, and practical support. Notably, about one-fourth of participants reported engaging in condomless sex with negative or unknown HIV-status partners. Given that all RSVP participants had an unsuppressed HIV viral load at their last measurement, the risk of further HIV transmission was possible, indicating that we reached persons who would benefit from assistance remaining in HIV care.
Similar to our findings, a myriad of social, behavioral, and structural factors have previously been found to be correlated with poor retention in care [
In summary, among persons presumed to be out of HIV care, there were self-reported indicators of at least intermittent HIV care, as well as frequently reported barriers to care and unmet needs. As previously described, locating persons who are truly out of HIV care is difficult [
human immunodeficiency virus
San Francisco Department of Public Health linkage and navigation program
Re-engaging Surveillance-identified Viremic Persons
The findings and conclusions in this report are those of the authors and do not necessarily represent the views of the US Centers for Disease Control and Prevention.
None declared.