Catherine R. Friedman

Transcription

1 Devolution and the struggle to avoid infections and social harms: Staying Safe in New York City Samuel R Friedman Pedro Mateu-Gelabert Milagros Sandoval Peter Meylakhs Juan-Carlos Valderrama Victor Agullo Esperanza Gomez Claudia Morales Tomas Zabransky Barbara Janikova Tim Rhodes Catherine R. Friedman et al.

2 We would like to acknowledge NIDA project R01 DA DA A1 Staying Safe: Long-term IDUs who have avoided HIV & HCV; Fogarty International Center for National Institutes of Health (Grant # D43 TW00233) Dozens of participants in this study Colleagues and participants who have died of HIV/AIDS and hepatitis C over the years

3 Introduction Drug dependency, d together th with the repression and stigmatization of drug use and drug users, threatens t users with devolution in which they lose control over their lives and intentions, ti becoming vulnerable to health-related and social harms. We describe ways some long-term injectors struggle to prevent devolution and manage age its effects. ects

4 Design overview The Staying Safe Project wants to discover how IDUs who have been injecting drugs for 8 15 years nonetheless remain antibody negative for both HIV or HCV. We invented a technique that can be thought of as a Positive Deviance Biographical Control-Case Study to do this. We recruit infected positives as Controls, uninfected negatives as Cases Qualitative comparative analysis of their life histories to develop grounded hypotheses about how double-negatives stayed safe.

5 Methods and rationale are described in: Friedman, Samuel R; Mateu-Gelabert, Pedro; Sandoval, Milagros; Hagan, Holly; Des Jarlais, Don C. (2008). Positive deviance control-case life history: a method to develop grounded hypotheses about successful long-term avoidance of infection. BMC Public Health :94 (20 Mar BMC Public Health 2008, 8:94 (20 Mar 2008).

6 More on Design and Procedures We collected and analyzed qualitative data on life histories and strategies they employ to remain safe from various harms from 29 long-term drug injectors, of whom: 19 were antibody negative for both HIV and hepatitis C 3 double positives 7 positive for HCV but not HIV.

7 Results A number of the double-negatives in the Staying Safe project used social and resource support from others to help them avoid the most high-risk and self-degrading aspects of the drug scene. For some, this support helped them retain housing and/or employment (in many cases, in underground economy jobs like drug dealing, shop lifting, stick-ups, sex work, or theft); for others, it helped them, even while living in the street, to maintain some social respectability and some ability to avoid high-risk injection environments.

8 Fighting devolution while living in the streets Although James Bond had been homeless for 8 years: For some years, he hid his drug use from his family and neighbors. Then and after, he maintained critical social support and the ability to spend an occasional night crashing with family and friends in part, by being sure to treat them well and respect their home. He kept his job selling drugs even though his supplier knew he was using drugs; he did this by scrupulously paying his supplier the full cost of the drugs he sold and buying his own drugs using his share of the sales. He got food from his 2 needle exchanges, which provide free lunch and dinner, and from various soup kitchens. His income from selling drugs, plus the social equilibrium he maintained by preserving social ties and having a place to shower, keep essential documents and clean clothes, and sleep inside when needed, let him minimize both withdrawal and HIV risk.

9 Overcoming heavy devolution with a little support from his friends At one point, James Bond underwent some months of serious devolution. After his wife died, he lost his ability to keep his drug use under control, and violated many of his rules for safety and for maintaining good relations with his supplier, friends and relatives. He got out of it due to his long ties with, and friendships with, people in one of his needle exchanges:

10 I went to the needle exchange, they actually did I think they call it an intervention, where a few of the counselors who really care about me, I guess, they locked me up in a room, Hey, look, we see you going downhill. Before you kill yourself, this is what we re going to do. They showered me right there, they ve got showers, and they showered me, they shaved me. Literally, held me down in the shower, held me down while they shaved me up, cleaned me up. You know what I mean? Gave me new clothes. So, they kind of put me in front of a mirror and said, Look, this is you. What the hell happened? You got to learn how to accept it and let it go. You re killing yourself. What good are you going to be to your daughter, if you kill yourself? You know, motivational shit. They cared, that s why today I still go there, I m still cool with everyone in there. If it wasn t for them I d be dead d right now, I d be dead right now.

11 A supportive environment helps people to avoid devolution Torch lived in a housing project complex in which people were very supportive. One resident was a diabetic who sold sterile syringes; other diabetics he knew would make syringes available to him when he needed them. Torch became homeless, but kept his local ties. A woman who lived there (and who smoked crack herself) would let Torch both take baths in her apartment t and also leave personal belongings there as well in part because he would pay her a few dollars or a little bit of drugs.

12 Gangster (HCV-positive) had access to credit from owners of local l bodegas. He was able to get this credit both because he repaid the loans and because he was raised in the local public housing projects where both he and his family were wellrespected.

13 A contrasting story devolution triumphant Sosa is positive for both HIV and hep C. His story differs from those of the double-negatives in many ways. Here is an example of one step toward devolution in which he disrespected his sister and ended up living on the street: J: I started doing things to like she got married and I sold all her all the gifts they gave her for marriage. When she got married I stole everything. I: You stole all the stuff? You sold it? J: Yeah. To get high. So I was doing I stole a master key to the Super and went into broke into a couple apartments. I: Okay. And this was in the Bronx? J: Yeah. And she started like, you know, I felt like she didn t understand and I said the hell with it. And I went to live in the streets.

14 Discussion Devolution is time-limited. At its worst, it can take the form of specific and potentially disastrouslyinteracting social and emotional problems such as: loss of income; ruptured social relations; homelessness; arrest; imprisonment; high-risk injection, sexual or other behaviors; infection with HIV, HCV, or STIs; performing acts that shame oneself deeply; depression; and much else.

15 People who inject drugs face forces that can push hthem into downward-spiraling d devolution. Arrests, incarceration, and social stigmatization are major examples of this and can interact negatively with varying levels of need to take drugs. Successfully managing social relations with family, friends, dealers and employers helps prevent devolution. As the examples we have presented illustrate, many injectors in this study who have remained HIV-negative and HCV-negative, as well as some who are infected, have found ways to limit the impact of one aspect or another of devolution and addiction on their lives.

16 The lack of income and housing support programs in the USA makes avoiding devolution harder than in some European countries. Homelessness (as with Sosa and others in our study) is thus a major problem for US users. Thousands of people p who inject drugs spend years as street users. Many street users in New York live on sidewalks, in parks or on rooftops; and others in shacks they have built in out of the way locations. Still others live in single room occupancy or other short-run, high-risk h i housing. Such housing has been linked to HIV risk behaviors and to HIV infection (Corneil et al, 2006).

17 On the other hand, many long-term IDUs avoid homelessness by maintaining sufficient income and respectability to live in their own or others homes. Even these IDUs, however, face the possibility of devolution into homelessness if they lose control of their drug use and its related economic necessities. The importance of housing was clearly visible in our study. One subject, Gangster, who had managed to stay safe for many years in his own housing, may well have gotten infected with HCV in a halfway house (where he was forced to live after his release from prison), when a friend secretly used his injection equipment while he was out of his room. This shows that even a short-term term housing crisis may disrupt safety routines and lead to infection.

18 Nevertheless, as we have just discussed, some people who inject drugs manage to avoid both HIV and HCV infection by finding ways to avoid, reduce or mitigate the effects of devolution. Actively working to maintain social support from other users; non-user friends, relatives, and neighbors; and harm reduction programs (as with James Bond when he lost control after the death of his wife) is a crucial part of this. Like many staying safe activities that we discuss here (Mateu-Gelabert talk in Session C2-3) and in our publications, avoiding devolution requires active effort and foresight. It belies theories of users as being slaves to addiction or to psychopathology.

19 Ways harm reduction programs can assist drug users avoid devolution and/or its harms We will conclude by outlining some ideas on how to help users deal with devolution issues: Programs to help those users who need it learn how to plan and implement methods to balance their income and needs; to control their drug needs; to avoid withdrawal; and to maintain their social relations. Help them avoid homelessness which in some countries may require long-term activist struggles involving broader forces than public health. Provide social support when it is needed which means being open at all hours of the day 7 days a week.