The Fortune Society’s Stanley Richards and Advisory Board Member Bob Fullilove served on the Ending the Epidemic Task Force, which Governor Cuomo convened after endorsing the groundbreaking Plan to End the AIDS Epidemic in New York.
Stanley and Bob were among 53 Task Force members to develop the Blueprint to End the AIDS Epidemic containing comprehensive recommendations, which support the goal to reduce the annual number of new HIV infections to 750 (from an estimated 3,000) by 2020. (Read more about the Blueprint and the plan here.)
Fortune health policy researcher and educator Cynthia Golembeski asked Bob to share his thoughts on the Blueprint and the plan, particularly in regards to HIV, incarceration, and health equity.
C.G.: In your TEDMED talk, you discuss the structural drivers of HIV and incarceration. The Blueprint also focuses on structural-level barriers and intervention strategies. How have you come to understand the importance of incorporating structural-level analysis and interventions?
B.F.: First and foremost, structural interventions need to be understood as opposed to what exactly? When interventions are directed at changing the attitudes, knowledge, or certain behaviors of individuals who are largely in control of the factors that will expose them to health or disease, then individual-level interventions make sense. However, individual choices and options may be severely limited, not by the individual but by the circumstances, whether related to the built environment, policies that guide and direct much of what they are able to do in the outside world, or key factors that we consider, including segregation and racism. In this case, it becomes clear that directing the intervention at the individual simply will not be as effective because the things that are conditioning the choices and the options that are available aren’t found in the individual. They are found in the social, economic, and built environment.
So, when one thinks about the ways in which HIV has become significant in Black communities since the 1980s, one is forced to think a great deal about what structures are in place. What are the social dynamics that surround those who are at particular risk for HIV infection because of their race? One keeps coming back to how certain U.S. urban areas are characterized by the degree to which they are segregated by race and socio-economic status. Then, when you look at the ways in which these neighborhoods are affected by outside sources, one is once again forced to confront the degree to which rates of incarceration are significantly greater in racially and socio-economically segregated urban areas in comparison to other communities.
That recent New York Times article, 1.5 Million Missing Black Men, points out how much and to what degree mass incarceration particularly affects Black neighborhoods and influences the presence or absence of men on these communities. My analysis of which set of factors dramatically influences the epidemic of HIV began with what happens in communities where so many men are missing. The article points out that for every 100 Black women, there are only 83 Black men. If you look at communities where the ratio of women to men has become particularly problematic — such as Ferguson, Missouri, where for every 100 Black women there are only 60 Black men — their share of racial strife, largely owing to the relationship that members of that community have to the police, is evident. If one assumes that the loss of men conditions everything from mating rituals to fathering possibilities for young people, it becomes evident that communities suffering that kind of loss in level of education and the number of parents in households are also affected by how men and women are negotiating sexual relationships. The moment that door is open and these structural factors affect the dynamics of mating and sexual behaviors, it becomes evident that HIV is going to be involved. It is hard to imagine that mass incarceration did not just impact the community, but also dramatically influenced the rates by which so many men were lost and the changes that created in that sexual environment.
C.G.: You mention Ferguson, Missouri. Less than 30 miles away, a suburban St. Louis jury recently recommended decades of imprisonment for Michael Johnson, a 23-year-old college student convicted of “recklessly infecting” another man with HIV and endangering four others. An article in The Nation suggests “Michael Johnson’s trial for HIV exposure is a perfect storm of homophobia, racism, and the criminalization of Black bodies.” What are your thoughts on this case in relationship to the criminalization of HIV within New York’s history?
B.F.: There has been a long tradition of protest around the efforts to criminalize sexual behavior, particularly when the folks who will most likely be tried for this appear to be gay men — also very likely to be gay men of color. I know one of the write-ups pointed out that someone convicted of manslaughter or second-degree murder is going to get a sentence that is less severe, in many instances, than what had been assigned to this young man. It becomes clear that this is not about law and this is not about justice. This is much more about bias, racism, and certainly homophobia, plus the ways in which HIV and its impacts are perceived. What we are seeing in the 20th and 21st centuries is that social control of poor communities of color is being increasingly exorcised via the police and the courts. This is another example of exactly that kind of trend to criminalize things that are out of touch with mainstream America.
C.G.: The Blueprint’s recommendations include decriminalizing syringe and condom possession, improving upon syringe access, and expanding syringe exchange. You have long been an advocate of syringe exchange and critical of the “drug paraphernalia law,” which made it illegal to carry syringes. Plus, you were one of the earliest researchers and advocates to underscore how, in treating substance use disorders as a criminal justice issue via the police, courts, and prisons, we fail to adopt a public health approach that prioritizes providing care, support, and treatment, as well as addressing inequities. Why is this conversation still relevant?
B.F.: At this point in history, the fact that in rural Indiana, of all places, there has been an outbreak of HIV in a community that is almost entirely White, but which is nonetheless rural and very, very poor, describes the degree to which needle-sharing behavior is still an active risk factor for the transmission of HIV. News accounts, including those that appeared in the Morbidity and Mortality and Weekly Report, are really quite shocking. There are folks who say they used the same needle, in some instances, 15 times or more until it broke off in the arm of the user. A simple expedient would do so much to lower the risk of infection. The extent to which we will not take that expedient way out represents how much and to what degree we desire the courts and the police to serve as vectors of social control in communities like this. Among other things, it leads to a bankrupt policy that unnecessarily results in HIV risk.
In the past history of New York, carrying around drug-use works was automatically judged to be a felony. It became a matter of public policy that the criminalization of carrying a syringe without a prescription was a major factor in driving the HIV epidemic. This was particularly true in New York where shooting galleries arose so the user could avoid being picked up by police and found with drug-use works, which may have added to an existing criminal record. The epidemic of drug use facilitated the spread of HIV not only due to individual behavior but also due to boneheaded public policy.
C.G.: Within the Blueprint, the Prevention Committee recommendations focus on such items as insurance and linkage to care; provider sexual health competency; PrEP and PEP; harm reduction; targeted testing and screening; condom promotion and distribution; decriminalization of condom possession; nonviolent drug violations; adult consensual sex work; and reducing burden of incarceration of men. “Reducing burden of incarceration for young men” struck me as a key area of focus, yet perhaps less commonplace within other HIV Blueprints or white papers.
B.F.: The committee’s deliberations had everything to do with considering reduced life chances that are present when someone is released from prison with a felony conviction. Prominent in these discussions were staff and administrators from Housing Works, who were the folks in the City of New York who had to deal with the burden that the HIV epidemic had imposed on folks who are homeless. Homelessness in NYC is usually tied to a history of incarceration. Folks who are having difficulty finding housing and jobs are much more likely to engage in risk behavior that may lead back to prison, mainly because they are trying to feed, house, and protect themselves.
To see reducing burden of incarceration for young men as a risk-reduction strategy makes sense given the burden our communities are under with so many of its young men locked up and away. Particularly when they return, there may literally be no place for them to go or anything for them to do, which places one at risk for incarceration. Thinking of incarceration as one of the social drivers of HIV and calling for interventions that will specifically reduce that burden make sense.
C.G.: The perspectives and leadership of community-based organizations, leaders, and advocates were crucial to drafting the Blueprint. Would you share your experiences with the Task Force and discussions of the critical role of community organizations in ending the epidemic?
B.F.: I think it is significant that community-based organizations, non-governmental programs, non-profits, and Black and Latino communities, especially in New York, have increasingly not only talked about HIV, but have enlarged their discourse to include very thoughtful presentations and analyses of the burdens that incarceration imposes on them and their constituents. I think this is an important move that suggests more supports should be directed to them because they are an important voice. They are not simply able to militate against or protest what is going in these circumstances, but they have the resources to actually solve the problems. I return to Housing Works and their efforts to come up with housing for folks living with HIV. It is important to support such efforts.
C.G.: There is much discussion of the significance of and support for peers throughout the Blueprint (i.e. support for peer specialist health navigation services; expanded use of a HIV peer workforce; peer-based interventions; upgrading of peer services; more peer training and reimbursement for peer training; and enhancing and legitimizing peer employment opportunities).
B.F.: I have done a lot of teaching over the last five years at the Bard Prison Initiative where I focused specifically on a public health concentration that has a heavy component looking at HIV and its impact on the health of the public. I know that young men and women, who have been trained in public health because they are afforded the opportunity to engage in college credit while they are on the inside, are in many instances uniquely able to see to others in everything that we have tried to communicate about HIV — its dangers and how to mobilize communities. Finding a way to support young men and women with that training is incredible because they speak to a large number of folks on the inside as well as on the outside. Peers are more likely to be heard than those of us who may be part of the mainstream. It is really important.
There are a lot of organizations like the Center for Nu Leadership on Urban Solutions created by formerly incarcerated persons literally to address these issues. They have a very specific program surrounding what to do with the challenge of HIV. Their efforts should also be highlighted and supported wherever possible.
C.G.: Your work since the early 1980s has thoughtfully considered individual and collective trauma. How have you come to understand the significance of trauma in relationship to HIV, mass incarceration, and health inequity, especially with the growth of support and advocacy for trauma-informed care?
B.F.: We very intently tried to understand why, in the late 1980s, so many women in the Black community were finding their way to addictive substances. In fact, Mindy Fullilove was one of the first and only to work to understand the relationship among trauma, crack use, and crack-related sexual behavior. The more we talked to people in drug treatment programs in New York City, the more clear it became that we were not looking at drug-use behaviors that were motivated by the desire to thrill seek. Many of these women were dosing and seeking to address prior traumas and prior psychiatric damage literally by going to a drug that would help them forget. The more we probed, especially with women who were smoking crack to feel better, we learned they were engaging in types of sexual risk behaviors, sex work if you will, to gain access to crack/cocaine. The more we looked, the more it became clear that we were looking at trauma. Not just trauma that is visited on the individual, but also trauma that was occasioned by living in the fabric of violent behavior, which was characteristic of communities where the crack wars were being fought over territory.
The violence was associated with drugs and related turf wars, and more importantly, the sex work may have often included very violent and infectious behaviors, which also led to sex without any kind of barrier protection or regard to health consequences. At that time in the early 1990s, there were high rates of STIs associated with sex work, including syphilis. In more cases than one, the notion that violent life in the community was the occasion for all kinds of efforts to escape the psychological impact of that violence meant that you had a ready market for the distribution of a drug like crack/cocaine. During this 10-year period, this wreaked all kinds of havoc on the public health infrastructure in these communities, not just with respect to HIV, but so many other related and highly problematic behaviors.
C.G.: Mary Bassett’s recent article, Black Lives Matter—A Challenge to the Public Health and Medical Communities, has been widely circulated. How do you situate this article in relationship to the Blueprint and the plan to end AIDS as an epidemic by 2020?
B.F.: I am one of the many folks who sent the article around and I also use it in my class. It is not only what she says, because she is one of many, many, many Black voices trying to help people understand that we live in a society that is not living up to its most cherished ideals. What is unique is, first, her position as Commissioner of NYC Department of Health and Mental Hygiene. Secondly, she is a physician. And thirdly, she describes herself as a parent. In this debate, she brings all of her professional identity into what has become for many people a very personal set of issues, namely how do we perceive life in a nation that adores the process and the idea of democracy, but acts in such a non-democratic fashion.
That racism can exist and have that kind of impact on the health of the individual and the health of the community is an anathema. I think her speaking about this is important because hers is a voice of someone who is in a position of authority and whose weight also carries with it a certain impact on public health.
So, A+ for the point of view and A++ for having it published in such a high-profile journal. As far as I can see, it has generated a lot of positive response as well.
C.G.: Dr. Bob Fullilove, thank you so much for your wisdom, dedication, and inspiration.
If you want to learn more, check out The NYS Department of Health AIDS Institute’s webinar series, Ending the AIDS Epidemic: The Science, Program, and Epidemiology of New York’s Plan. You can also find additional information about the plan to end the HIV/AIDS epidemic in New York State by the end of 2020 on Governor Cuomo’s website.
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