We Cannot Forget Those Living With HIV Behind Bars

“Everyone has a right to dignity when they need medical care.... And by everyone, I mean our brothers and sisters behind bars [...] I urge all of you working on HIV and tuberculosis to remember those among us who are not free. Keep them in your thoughts and actions, build them into your budgets and plans.” — Desmond M Tutu

As we recognize World AIDS Day and month, we need to ground Desmond Tutu’s words into concrete initiatives. People living within prisons and jails are still an overlooked, important demographic affected by the HIV epidemic.

Even though 1.3 percent of incarcerated individuals within United States state prisons are living with HIV — which is five times higher than the national HIV prevalence of 0.36 percent — those who are incarerated are often last to be considered in national health initiatives like the federal "Ending the HIV Epidemic by 2030" initiative.

People living within jails and prisons are the only demographic in the U.S. with a constitutional right to health care. However, the care they receive is often not guaranteed to be quality, comprehensive, inclusive, or preventative.

We must systematically assess the gaps in HIV services for incarcerated populations, and improve HIV services for people living within prisons and jails to, at least, the minimum standard of HIV health care outlined by CDC guidelines. These improvements uphold the health and rights of people living in prisons and jails and have broader health benefits for addressing and preventing HIV in U.S. communities.

The U.S. has the largest population of incarcerated individuals in the world with 2.3 million people living within a jail or prison, and an incarceration rate of 698 per 100,000 people.

Several U.S. cities lead the world for highest rates of incarceration including: Oklahoma City, Ok. (937 per 100k), Philadelphia, Penn. (897 per 100k) , and Milwaukee, Wis. (812 per 100k). These steep incarceration rates are not felt equally across communities. Indeed, persistent systematic racial inequality continues to drive disproportionately high rates of incarceration and HIV among African-Americans.

Overall, 14 percent of people living with HIV will serve time in a correctional facility within their lifetime, however, 20 percent of African-Americans living with HIV will pass through jail or prison each year. Furthermore, the high prevalence rates of HIV within prisons and jails can be attributed in part to the disproportionate incarceration of key populations of the HIV epidemic such as people who identify as LGBTQ and people who use or inject drugs.

High prevalence rates of HIV among incarcerated populations can also be attributed to lack of access to HIV services and strong stigma surrounding sex, drug use, and HIV within prisons and jails.

Many prisons and jails do not have comprehensive sexual health literacy programs or provide sexual health resources, such as condoms, because of the illegality of consensual sex within prisons/jails and the fear that these interventions would promote risky behaviors. Where these services do exist, the stigma, shame, and illegality of sex within prisons and jails can make it difficult for individuals to feel comfortable engaging with services.

Failure to provide sexual health education and harm reduction training to people living in prisons and jails is a missed opportunity to inform individuals on how to protect themselves both while incarcerated and upon release.   

Interactions of people within the criminal justice system are valuable intervention points to connect people living with and at risk of HIV with treatment and prevention services. However, comprehensive HIV care is rarely available within state-level prisons and jails, often due to a lack of standardized state-level department of corrections’ medical guidelines for HIV services.

Currently, the majority of states do not follow CDC guidelines for HIV testing, prevention, and treatment — a minimum first step to addressing HIV in prisons and jails. Interventions must include not only linking HIV-positive individuals to care while incarcerated, but should focus on prevention education, and connecting individuals to services in their communities prior to and upon release. These efforts promote continuity in care and reduce HIV treatment interruptions post-incarceration, which is a particularly chaotic period of time where individuals may be re-introduced to risky behaviors, and face many competing priorities including housing and employment searches.

On a policy level, some states have mandates on HIV education and linkage to care. For example, California’s Department of Correction’s medical guidelines mandate health education programs on HIV.

California’s health education guidelines are more comprehensive than most states, with the provision of a peer mentorship program aimed at creating cultural change for those incarcerated and their community through structured health education. Additionally, the Department of Corrections in Colorado models best policies for linkage to continued HIV care upon discharge with mandates for educating people with HIV on adhering to medication, community resource contacts and disclosing medical information to a community provider, as well as providing a supply of antiretrovirals upon release. However, more extensive research needs to be done in order to evaluate the actual implementation and quality of the services that are mandated by these policies.

Not all states even include these mandates for HIV services in their Department of Corrections medical guidelines. The results of a 2012 survey of HIV testing and education services provided in Illinois county jails found that only 23 out of 102 county jails perform regular testing and education in part because of lack of DOC policies mandating these services.

In response, the Illinois Department of Public Health enacted new HIV guidelines in the County Jail Act. This act mandates that information on HIV from the Department of Public Health/CBOs and testing for HIV be provided to people living in county jails.

The Illinois Department of Health partnered with the Department of Corrections to create the IDPH Correction Program, which oversees HIV peer education programs, establishes linkage to care for people living within prisons and jails, and ensures that corrections staff are properly trained on the needs of those living with HIV. This translation of research to policy and practice is an example of the work that must be done nationally to improve HIV treatment and prevention services for incarcerated and recently incarcerated populations.

Historically, prison health services for HIV have been isolated from national HIV programs and initiatives under the jurisdiction of the federal government. However, it is important that we address incarceration as a public health crisis, and include the incarcerated population as a key focus in national health initiatives including the federal Ending the HIV Epidemic by 2030 initiative.

Katherine Kuenzle is a Public Policy Fellow at amfAR.