HIV epidemic cannot be ended without stopping former prisoners and other patients being lost to care

*Please mention the ESCMID Global Congress (formerly ECCMID) Barcelona, 27-30 April) if using this material*

New data from an implementation programme to be presented at this year’s the ESCMID Global Congress (formerly ECCMID) in Barcelona, Spain (27-30 April)  stress that the global HIV epidemic cannot be ended without keeping former prisoners and other patients engaged in care, and outlines the efforts made by HIV care clinics in Chicago to locate formerly incarcerated individuals living with HIV who dropped out of care and to reconnect them with treatment services.

New data from an implementation programme to be presented at this year’s the ESCMID Global Congress (formerly ECCMID) in Barcelona, Spain (27-30 April)  stress that the global HIV epidemic cannot be ended without keeping former prisoners and other patients engaged in care, and outlines the efforts made by HIV care clinics in Chicago to locate formerly incarcerated individuals living with HIV who dropped out of care and to reconnect them with treatment services.

“HIV requires lifelong treatment and efforts to maintain antiretroviral therapy are critical to achieve viral suppression, which reduces illness and death as well as onward HIV transmission”, says lead author Professor Maximo Brito from the University of Illinois in Chicago, USA. “Most new HIV infections in the USA are acquired from people living with HIV who are either undiagnosed or diagnosed but not retained in HIV care.”

HIV and incarceration both disproportionately affect people who are already marginalised by homelessness, substance use, mental disorders, and socioeconomic status. The USA has the highest incarceration rate globally (910 per 100,000 adults), with one-sixth of the country’s 1.2 million individuals living with HIV cycling through prisons or jails every year [1].

Incarcerated people with HIV are at high risk of loss to care (stop attending clinics and taking treatment), after being released back into their communities due to numerous structural and social barriers, including poverty, poor mental health, lack of support, and lack of employment and housing.

In this quality improvement implementation project, clinicians from the University of Illinois Community Clinic Network estimated how many of their patients living with HIV truly dropped out of care, who they were, and whether they could be re-engaged.

The network includes six HIV primary care clinics (five neighbourhood clinics and one hospital-based clinic) that serve people living with HIV in Chicago, including formerly incarcerated people living with HIV referred upon release from the Illinois Department of Corrections.

Medical records were reviewed for all patients registered at the five neighbourhood clinics to identify those who had previously tested positive for HIV but had not attended an HIV care visit within the last 12-months and had no current antiretroviral therapy prescription.

Outreach workers made intensive efforts—including phone calls, letters (mail and email), home visits, and internet searches—to contact this group of patients. Once located, patients were offered help in re-engaging with treatment services and restarting HIV care.

Of 491 individuals living with HIV registered with the network, over a fifth (22%) 108 were lost to care. Those who dropped out of care were disproportionately from minoritized populations: most were male (89%) and Black (63%) or Hispanic (19%), with an average age of 41 years. Of these, 23 had transferred to other clinics, been re-incarcerated, or died.

This left 17% (85/491) who had truly disengaged (alive and out of care), of whom 33 were formerly incarcerated.

Of those lost to care, three-quarters could not be contacted due to an invalid phone number, 16% had a working phone number but did not answer, and 2% were contacted but did not want to return to care.

This left just five patients (6%) who were successfully located. Of these, one formerly incarcerated individual and one of four patients who had never been incarcerated, returned to care.

“While challenges abound, locating people living with HIV who drop out of care, and then re-engaging them with medical care, is essential to end the HIV epidemic in the USA and elsewhere”, says Professor Brito. “Retention remains suboptimal for many HIV programmes and effective strategies to retain and re-engage patients living with HIV are urgently needed.”

“This problem is not unique to the USA. Globally, people experiencing incarceration are among the most marginalised populations, which make them vulnerable to HIV infection, HIV associated complications and abandonment of antiretroviral therapy,”  Professor Brito added.

He continues, “Interventions that address barriers to engagement in care will pay dividends such as better support for HIV patients' mental health needs. We need dedicated resources to optimise people’s HIV care while they are in prison and to link them to community-based care upon release. Resources like case management, health insurance and treatment for addiction and mental illness will help individuals stay healthy, treatment adherent, virally suppressed, and reduce their chances of reoffending and returning to prison.”