Programming Connection

Project Engage 

CATIE

2017

A study1 has shown that, among people living with HIV who are disengaged from care, a social network approach can successfully find and link them into HIV care. Using this social network approach, Project Engage linked 69% of participants to care within three months, and retained 79% in care. Within 12 months, 40% of participants achieved an undetectable viral load, which was a significant increase from when they were first linked to care (26%).

Project Engage

Project Engage is a linkage-to-care program in Los Angeles County that targets people living with HIV who are out of care. Opinion leaders and others who were not necessarily HIV positive but who had large social networks (known as seeds) were recruited to, in turn, recruit HIV-positive people disengaged from care (known as alters) into HIV care. As part of the study, program staff also recruited people living with HIV who were out of care through passive outreach (flyers and pocket cards) and active outreach (going to places where HIV-positive people are likely to hang out).

Staff from agencies such as homeless shelters and substance use programs were asked to recruit seeds using a screening form that identified people with large social networks. Potential seeds were asked:

  • if they knew anyone in their social network who was living with HIV and out of care
  • the number of people they knew out of care
  • whether they felt comfortable talking to their friends about their HIV status and HIV care

Seeds received 10 vouchers that included an identification number that linked alters back to the seed who referred them. An alter was defined as an HIV-positive person who had at least one of the following characteristics:

  • had no HIV lab tests reported in the Los Angeles County HIV surveillance system for more than 12 months
  • had no HIV lab tests reported in the Los Angeles County HIV surveillance system for the last six to 12 months AND had a detectable viral load at their last viral load test
  • was recently released from jail, a residential treatment facility, or other institution and had no regular HIV care provider
  • had fewer than two medical visits in a 12-month period with the same HIV care provider
  • was recently diagnosed with HIV and had no medical visits within three months of diagnosis

Seeds and alters both received US$40 when they completed a Project Engage questionnaire. Both also received US$40 when an alter completed their first medical visit. Alters who completed their first medical visit were then eligible to become seeds.

At the same time as seeds were recruiting alters from their social networks, Project Engage staff were recruiting seeds and alters directly in public areas, and distributing program flyers and pocket cards to agencies and clinics, and posting them in public areas.

Once an eligible alter was identified by project staff or by seeds, they met with a trained staff member to assess their needs. Alters who were not interested in engaging in care received education on the importance of HIV care, and were asked if staff could continue to follow up with them.

Alters identified by project staff and by seeds, and who were interested in accessing care, were linked by project staff to an HIV clinic with a medical coordination team. Clinics with medical coordination teams have a nurse, case manager, and social worker, and the resources to support and retain clients with complex health and social needs. The team coordinates with medical providers, and makes referrals to substance use treatment, mental health services, housing, transportation, and other non-medical services.

Project staff helped alters choose a clinic, made the first appointment, sent reminders, provided transportation, and accompanied them to their first visit.

Who did Project Engage reach?

Project Engage recruited 62 eligible seeds and 112 eligible alters. Seeds recruited 67% of alters and project staff recruited 33%. The majority of seeds recruited between one and four eligible people from their social network; one seed recruited 59 eligible people from their social network.

Most alters (61%) were between the ages of 30 and 49, 80% were male, 14% were trans women, 60% were gay men, 23% were bisexual, 38% were African-American, and 22% were Latino. Most (89%) had annual incomes of less than US$12,000 a year, 63% were disabled or received social assistance, and 60% were publicly insured. Alters reported being homeless (78%), ever using illicit drugs (74%), being incarcerated in the past 12 months (50%), engaging in sex work in the past six months (32%), and injecting drugs in the past three months (24%).

The medical histories of alters showed that:

  • 68% had been on HIV treatment (ART) at some point in the past
  • 47% had been recently released from jail where there was no regular HIV medical provider
  • 38% had no HIV medical visits in more than 12 months before enrollment
  • 24% had only received HIV care in jail or prison in the last five years
  • 14% were newly diagnosed with no medical visit within three months of their diagnosis
  • 11% had no HIV medical visits for seven to 12 months and their viral load was detectable on their most recent viral load test

When alters were asked about the services they needed the most, 96% reported needing medical care, 91% needed case management, 89% needed general healthcare services, and 81% needed mental health counselling. The most commonly reported barriers to care were difficulty navigating the system (26%), substance use (14%), and incarceration (10%).

Most people living with HIV out of care were linked and retained in care

Out of 112 alters recruited by Project Engage, 69% were linked to care within three months, 5% within four to six months, 8% within seven to 12 months, and 4% in more than 12 months. Fifteen percent (17 participants) were lost to follow-up.

Seventy-nine percent of alters were retained in care, defined as a second viral load test between six and 12 months following linkage to care.

A significant increase in undetectable viral load among participants

Twenty-six percent of alters had an undetectable viral load when they were first linked to care. This increased significantly to 40% at the time of their second viral load test.

Project Engage acceptable to participants linked to care

Among 75 alters who completed a survey about Project Engage, 100% would recommend the program to others, 100% were satisfied with the program, and 81% reported they would not have entered HIV care without it.

What does this mean for Canadian service providers?

Effective and lasting linkage to care is crucial to improving the health of people living with HIV. Effective linkage can lead to HIV treatment for people who are ready to start. Effective treatment (resulting in an undetectable viral load) allows an HIV-positive person to live a long and healthy life.2  Engagement in treatment and care can also have a significant impact on HIV prevention. People who are engaged in care, taking ART, and have an ongoing undetectable viral load are substantially less likely to transmit HIV to others. In fact, studies show that people who maintain an undetectable viral load do not pass HIV to their sexual partners.

This study demonstrates that social networks can be one way to recruit people into care. However, the study has a significant limitation. The effectiveness of the program relied, in part, on what the study authors described as a “super seed,” one participant who recruited most of the alters. When developing a social network intervention like Project Engage, Canadian service providers should consider strategies to identify more super seeds.

Social network approaches to HIV work have been used in Canada to link people to HIV testing. The Saskatoon Health Region uses a social network approach to encourage HIV testing and counselling during HIV outbreaks; AIDS Community Care Montreal has  used a social network strategy in the past to recruit gay, bisexual, and other men who have sex with men to test for HIV. 

References

  1. Wohl AR, Ludwig-Barron N, Dierst-Davies R, et al. Project Engage: Snowball sampling and direct recruitment to identify and link hard-to-reach HIV-infected persons who are out of care. Journal of Acquired Immune Deficiency Syndromes. 2017 Feb 6;1. (in press)
  2. CANOC collaboration, Patterson S, Cescon A, Samji H, et al. Life expectancy of HIV-positive individuals on combination antiretroviral therapy in Canada. BMC Infectious Diseases. 2015 Dec;15(1):274. Available from: http://bmcinfectdis.biomedcentral.com/articles/10.1186/s12879-015-0969-x