current events

Reflections from My Travels: The Continuing Role of Community Based Organizations in the HIV/AIDS Epidemic

In the 1980’s, the South Bronx of my childhood was the epicenter for AIDS in New York City, with one of the highest AIDS infection rates in the city, if not the country.  Even during the early stages of the epidemic, the disproportionate impact on the poor, on minorities, on the disenfranchised was readily visible in my neighborhood.  A sickly individual would be described as “looking like death”, and whispered speculation as they passed by on whether they were homosexual, a drug user, or had “that AIDS thing” were not uncommon.  But the world I grew up in was the world of the marginal.  Access to food, to shelter, to education, to a safe space was never assured, let alone access to adequate health care or social services.  The crime, violence, drugs, and social breakdown attendant on the urban poor further exacerbated the impact of AIDS on the community of my youth.  What as researchers we sometimes blithely and clinically refer to as “infrastructural barriers” is truly about survival at the margins, and good fortune or the luck of having a caring parent can quickly determine the difference between individual resiliency and descent back into the cycle of poverty.

My mother, a proud Puerto Rican who had little education of her own, yet valued it enormously for her children, and a community based organization called “A Better Chance” helped me step outside the desperation of the South Bronx and attend private school, then college, and as I immersed myself in academics, began to realize that I was an alien in two communities – no longer blindly accepting the cultural norms of the Bronx as a given, yet recognizing that the rarified norms of a Massachusetts private school were equally constraining, I started to move between these two worlds as a cultural broker.  As I pursued a PhD at Berkeley, my research began to focus on stigma as a barrier to access to healthcare, as this was what I saw firsthand (without being able to name it in social psychological terms at the time) in the Bronx, and began to examine how this insight could be applied to more effectively assist communities at risk.

Community Based Organizations are similarly cultural brokers for the communities they serve, and have positive ripple effects far beyond their official missions.  Community based organizations are frequently the glue that helps hold communities together, helps communities survive against long odds, quoting de Tocqueville from almost 2 centuries ago, “Americans of all ages, all conditions, and all dispositions constantly form associations … associations of a thousand other kinds, religious, moral, serious, futile, general or restricted, enormous or diminutive. … I have often admired the extreme skill with which the inhabitants of the United States succeed in proposing a common object for the exertions of a great many men and inducing them voluntarily to pursue it”. This still holds true today, and as we now face extraordinary demographic shifts and a melting pot de Tocqueville could never have conceived of, the ability to form these associations and integrate into communities is more important than ever in our society.

International, Federal, State, Local, and community-based organizations share a common goal — to reduce the impact of HIV/AIDS.  Ongoing biomedical advances provides us essential physical tools to combat the disease, invaluably prolonging lives, and making life better for those already infected.  But we live in a harsher reality, where the mere existence of a biomedical advance does not mean all have access to it.  This means another essential weapon in our arsenal must be behavioral prevention. Any reasonable psychologist will assure you that there is no such thing as a “one-size-fits-all” behavioral intervention.  Behavior is intertwined with cultural norms, and we ignore this in the prevention field at our peril.  In a country of such rich diversity as the United States, behavioral intervention must be adapted to social and cultural context to be effective, particularly when dealing with ethnic, minority, and marginalized populations.  Few entities are as well positioned as community based organizations to address this need.  CBOs are the “boots on the ground”, staffed by individuals who are part of communities, who can tap into those communities effectively, and mold prevention strategies for increased effectiveness in the communities they serve.  The term CBO can encompass anything from primary health care agencies to community centers, but they share the common characteristic of integration, access, and understanding of a local community or specific population.  It is not a question of whether we should use CBOs, as their use is a fact.  CDC has directly funded numerous CBOs in prevention efforts for many years.   The question is how to further increase cooperation across all levels of government and communities to meet our shared goal of a world without HIV/AIDS.

The community-based organization historically has been in the vanguard of HIV prevention program implementation. HIV prevention programs frequently were designed based on local knowledge rather than empirically validated behavioral theories.  Not only that, historically CBO’s have been at the forefront of advocacy for research, access to services, and attention to the impact of the epidemic on under-represented populations.

The United States is now at a socio-cultural crossroads with demographic shifts that are rapidly changing the public health landscape, placing current models of HIV prevention at risk of becoming irrelevant or counter-productive, unless we address new realities.  These realities exist at the community level, and require community-based expertise to determine best practices. There is a need for a combined systems approach to prevention programs so that there are multiple access points, multiple types of interventions targeting our communities, structural and individual behavioral interventions.

Local organizations continue to persevere, maintaining an energy and sense of purpose that has allowed them to create innovative strategies, tailored to their communities, in spite of the many challenges associated with the provision of HIV/AIDS prevention services. There are promising biomedical approaches on the horizon that need to be coupled with community based approaches, along with increasing access to care. As researchers move forward with the search for new HIV prevention strategies, it will be critical to determine how these approaches can best be integrated into existing prevention programs, should they prove effective in reducing risk. Because no strategy is 100 percent effective in preventing HIV infection, the future of the epidemic will ultimately be determined by how effectively strategies are used in combination to provide the greatest protection to individuals at risk. There is a continuing role of CBOs as implementers with credibility in the community. Even if these biomedical tools become widely used prevention methods, we will still rely on Community Based Organizations to make these approaches palatable to the communities. Doctors and medical researchers address important physical health needs.  Community Based Organizations more typically approach health issues as part of a more integrated picture of individual and community needs.  The role of the CBO is addressing health inequities is precisely this – to see the “whole person” and addressing a whole set of inter-related, but different needs, all of which contribute to promoting health for an individual, and through them, their communities

In closing, I refer to Maslows Hierarchy of Needs and put forth that the role of the community in addressing health inequities is that of treating the individual as a whole person and seeing that individuals and communities alike have differing levels of needs to be addressed in order for them to thrive and be healthy.

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