When I entered the prison gate for the first time after 30 years, I was wondering what would be my feelings and what would be the thoughts crossing my mind.
I had been a drug user and I had been in prison 5 times for offences related to drug use, but this time it was different, I was entering the prison as an HIV activist as part of a project aimed at encouraging HIV and hepatitis testing and treatment adherence. It wasn’t part of the project, but I knew that part of my work would be aimed at fighting the high level of stigma and discrimination present in prisons.
Yes, I had been in prison and I knew what stigma and discrimination was all about. My last time in prison was in 1982; HIV was still an unknown disease. During that last stay, we had a lot of drugs coming in the prison, but not many syringes. I remember how common it was to share syringes, just to give you an idea, just referring to the prison unit where I was, where most of the drug users were placed, one single syringe could be shared among 30-40 people – an epidemiological bomb!
But let’s go back to my thoughts and feelings. You know, when you’ve given up drugs and have totally changed your lifestyle, you don’t really think about certain moments of your life that much any longer. But entering that prison gate, everything came back to me. Crossing those gloomy corridors, listening to the noisy voices coming from the prison cells, walking with the prison guards holding a bunch of keys opening one door after another, and finally reaching the place where we would be having our meeting, I plunged into my past, suspended halfway between who I used to be and who I had become. I was feeling uneasy and uncomfortable.
Prisons are parallel worlds where all the values are turned upside down, and all the things we treasure in our daily life become mere impossible objects of desire. This is what the loss of freedom is all about. A parallel world with new and often not understandable rules that you must comply to in order to survive. As I said, HIV was still an unknown disease so I didn’t personally know what living with HIV in prison meant, but I did know what it meant for a drug user. You would be considered a second-class human being, just one step behind would be the so-called migrants, and one step further down transsexuals and gay men, and at the end of the line would be the sex offenders, rapists and child abusers.
But when I entered the meeting place and people started to come in I suddenly came back to my present, to the reason I was there. I knew my words would have a deep impact on them only if they accepted me right from the start as one of them, someone who had been in prison just like them who spoke their language.
I was there as a peer educator, I had to filter my past personal experiences through my present in order to get the right message out to them, what HIV was all about, how it could and how it couldn’t be transmitted, which treatments were currently available, how it was possible to successfully survive these diseases, how people living with HIV and/or hepatitis were just as ‘normal’ as anybody else, how someone with HIV and who regularly took his medications was indeed less ‘dangerous’ than someone you knew nothing about.
This was my first of many meetings in Italian prisons.
In the course of our ongoing project ‘Health without Boundaries’ I have been able to visit over forty Italian prisons, meeting over three thousand prisoners. Considering the high prevalence rates of HIV, HCV and HBV infections in prison environments, with a high percentage of prisoners unaware of their status, our aim was that of encouraging as many people as possible to test for HIV, hepatitis B and C. The format consisted of double intervention, the first one more technical, carried out by an infectious disease specialist, and the second part would be about me and my personal experiences. The synergy between the two has been able to produce good results in the uptake of testing. In several large Italian prisons very high rates of testing have been achieved, as well as very high rates of people with HIV starting therapy and reaching undetectability. The same is happening for the treatment of Hep C with DAAs, however, there are still some difficulties. Moreover treatment with DAAs is still limited and not available to all in Italy, but many have been able to access treatment and successfully conclude their cycle of cure. Of course, the situation changes from prison to prison and from one geographical area to another. Comprehensive data are extremely difficult to collect; it often depends on the willingness and open-mindedness of the single prison administration.
Traditional interventions in health in prison settings have many weak points: communication barriers between prisoners and prison staff, difficulty in making prisoners interiorise messages on health, and therefore difficulty in making people on treatment reach a good level of adherence to therapy (many prisoners with HIV still tend to hide their pills or don’t take them at all for fear of being finger-pointed).
In the course of our meetings I’ve tried to tackle some of these problems, offering a space for debate and the exchange of experiences. I’ve listened to their doubts, to their complaints, answering their needs for more detailed and accurate information. Through my personal experience of a person who has been living with HIV, Hep B and C for over 30 years, who has gone through drug abuse and incarceration, who has been stigmatized and discriminated for all these reasons, who has never given up and is living a fulfilling life, I’ve tried to break the hard-to-change image that many of them might have of ‘drug addicts and people living with HIV/AIDS’. Through a humanistic approach, in which change is conveyed through the sharing of similar experiences, I try to promote the respect for others, healthy relationships, positive behaviours, and therefore a change in prison culture.
I do my best in transmitting a positive message to those who might discover testing positive to HIV and/or hepatitis and at the same time I try to encourage prisoners to take care of their health with a proactive attitude.
Certainly, you can’t do a good job on prevention in prisons if you don’t talk about sexuality and substance use. The Italian Guidelines say: “it is well-known how some ‘risk’ practices such as tattooing, unprotected sexual practices and the sharing of syringes are still quite common inside prison settings”, yet it is sometimes extremely difficult to openly talk about sex and drug use in prisons because of the dominant culture, strongly homophobic and prejudiced. And it is still extremely difficult to introduce the use of condoms and needles in Italian prisons, even if our guidelines do recommend them. Violence and sex abuse are quite common, and the educational work we do can effectively act as a deterrent that discourages prisoners from certain practices for fear of disease transmission.
At the end of each meeting, after all this exchange of information and debate, when I ask them who they think would represent a greater threat, a person living with HIV and on therapy or someone they knew nothing about, they would all look at me and at each other puzzled, amazed at the fact that something had changed in their way of seeing things. The period of detention does represent a unique opportunity for many prisoners, a moment in their lives in which they have time to reflect, a moment in which they are more receptive and open to suggestions.
Of course you never know to which extent your words have been interiorized, but it gives me great satisfaction to know that for some of them it has been an important experience that they will probably treasure for the future.
It also represents a unique opportunity for the health care system, making it possible to offer services to people who would otherwise be difficult to reach, both for lack of formal requirements, for example undocumented migrants, and for problems connected to behaviours legally and/or socially disapproved (IDUs, sex workers etc.). Prison health is actually never very high on the agenda, nobody actually really cares much about the health of prisoners, the unsaid thought is that they probably deserve whatever they get. Health officials and policymakers should be aware of the fact that prisoners may lose their freedom but they don’t lose their human rights including the right to health just like anybody else in the community, and that health in prisons is indeed a public health problem.
Providing testing, treatment and linkage to care services to people while they are incarcerated can improve the public health by saving lives, reducing disease transmission and reducing costs to the health system.
Peer education has proven to be an effective tool in educating prisoners, but it is certainly insufficient and unsatisfactory to propose behaviour changes without the support of harm reduction programmes (condoms, needle exchange, tattoo kits etc.).
One last thing, today one of the major challenges is guaranteeing the continuity of care for prisoners when moving from one correctional institute to another for various judicial reasons. This is particularly relevant if you think about someone on treatment for HIV or undergoing a cycle of treatment for Hep C with DAAs. Much has been done in this direction, thanks to the contribution of community-based patient organizations. But guaranteeing continuity of care upon release from prison is an even more challenging issue. It is essential for the effectiveness of treatment, so when prisoners are released they should be provided with needed medicines for a certain period of time, appointments for follow-up in their local clinic, and copies of their medical records, which is something that is currently just not happening.
Mario Cascio, EATG member and peer educator