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Executive Summary

Executive Summary: A Systemic Approach

In-depth interviews with policymakers, researchers and activists from within the HIV/AIDS community found perspectives that are often divergent from public attitudes. Experts, who are well versed in the issues, their underlying causes and various cultural currents, tended to approach HIV/AIDS systemically and favored structural solutions that addressed these problems. For example, experts commonly offered two reasons as to why HIV/AIDS in the United States has fallen from the cultural radar. First, the public believes treatment is available to anyone who needs it—in other words, HIV has been successfully “managed” and is no longer a problem; and second, many people think HIV still happens only to “those people,” suggesting that the public links HIV/AIDS to specific behaviors, having little understanding of heightened risks and barriers in specific communities or social contributors to the epidemic.

Experts commonly referred to the United States health care system as a contributor to a variety of problems with HIV. Lack of access to care, experts said, prevents people from getting the medicines and treatments they need to stay healthy; and fostering trusting relationships between health care providers and patients is necessary for people to get and maintain appropriate care. Experts also implicated other socioeconomic and structural problems as primary factors contributing to the spread and devastation of the epidemic, with many showing how HIV disproportionally affects disadvantaged or marginalized groups. For example, some said those who do not have the adequate tools to negotiate sex within their relationships are more at risk. Other experts talked about how less educated and low-income individuals are more at risk because they have little hope in their lives and consequently engage in riskier behavior.

When talking about solutions, experts focused on education, but they pointed out that there is much more to be done to make education effective. Experts pointed to social marketing and additional research on human sexuality and risk behavior as ways to improve education. They strongly believed that targeted messages to high-risk demographics would be most effective. While most experts supported funding for vaccine research, many emphasized that it may take some time before one is ready for use, and consequently, more funding needs to be directed toward prevention, care and treatment.

Experts also discussed how HIV stigma not only has contributed to widespread discrimination of those with HIV/AIDS, but also has been a driver of the epidemic. For example, some of our experts working in the African-American community shared that many African-Americans still believe that HIV is a “gay disease” and do not feel that they are at risk.

Additionally, experts said that existing beliefs and prejudices held by policymakers—homophobia, racism, disapproval of drug users and non-monogamous people, and perceptions about transmission risk—have resulted in policies that are counterproductive to solving the epidemic. As such, some experts talked about condom distribution, needle exchange and honest discussions about sex as examples of prevention strategies that must be used going forward.

Experts also pointed out that providing care and services to people with HIV is an important prevention strategy. Some said that providing people who are HIV-positive with antiretroviral medication can lower the amount of HIV in their blood, thereby reducing the risk of transmission. Others said that providing housing and drug treatment for those with HIV is crucial in reducing risky behavior and improving adherence to treatment and drug regimens. .

Low Salience, Support For Funding

Focus groups confirmed and elaborated on what surveys have shown - that for most Americans, the issue of HIV/AIDS in the United States is off the radar - it is worth noting that this is not universal. In every city we studied, African-Americans had a greater awareness of HIV/AIDS and often knew someone touched by the disease.

Young people, particularly in New York City, were well-versed in the ways in which HIV is transmitted and the difficulties facing HIV-positive individuals. And nearly all participants, regardless of their age, knowledge level or experience, expressed sympathy for those who have HIV. In trying to imagine the life of someone who has the illness, people spoke emotionally about the isolation and financial hardships they must face, sometimes using their own experiences with health care in the United States as a basis for how HIV patients may feel.

In addition, most people strongly supported funding and initiatives for education campaigns to raise awareness. The public’s ideas about how this would work were not the same as those expressed by the experts with respect to finding ways to combat stigma or target populations at risk; rather, they took the form of broad-based awareness campaigns to fill in the holes in their own knowledge about the disease.

Obstacles And Barriers

The stigma that still surrounds the disease is clearly a barrier that needs to be overcome in order to combat HIV/AIDS. Our research uncovered two distinct strands of thinking that lead the public to look at this disease differently from others and may lead to the stigmatization of individuals who are HIV-positive.

First, there is widespread apprehension about how HIV is, and is not, transmitted. Across the country, and even among otherwise knowledgeable participants, perceived risks of infection were often overinflated. Though some participants rejected certain scenarios as unlikely to transmit HIV and were quick to rattle off the ways that HIV is most commonly spread, they were often still concerned about the risk, however small. This sense of concern was compounded when participants considered the possibility of an HIV-positive person being around their children or other vulnerable persons. Thus, we found many people would be uncomfortable if they or their loved ones were around someone with HIV.

Second, most people believed HIV results from a person’s individual actions—namely, from "risky behavior." Some feared that their children or another loved one might have to pay a terrible price for “making a bad decision.” Consequently, they assumed that the only way to address the problem is to educate people on ways to reduce risky behaviors or eliminate the risks entailed in them, as with the creation of a vaccine.

The general public’s lack of understanding of, and familiarity with, a whole range of public health solutions—measures that could make a significant dent in the number of Americans acquiring and transmitting HIV—was apparent. Even among participants who understood that certain demographic groups were at a higher risk—low income, urban, minority, young and gay—most still focused on individual behavior and risk taking, not immediately understanding how public health and other structural remedies that address social determinants of health might be helpful.

Recommendations For Engagement

  • Help people to understand that the problem has not been "solved."

    HIV/AIDS in America has clearly lost some urgency with the general population. Many people haven’t thought about the issue in years. As a result, some of their knowledge about the disease has faded, become out-of-date or is just plain false. Raising awareness of how serious HIV/AIDS still is here in the United States—and that it disproportionately affects particularly vulnerable populations—is necessary for building support to fund projects to effectively target and combat the disease.

    An avenue into raising awareness is making sure that HIV/AIDS is included in the national health care debate. The rising cost of health care is an issue that Americans are very aware of. In surveys, people most frequently say they worry about the cost of health care more than any other concern—even more than the quality of education, saving for retirement and crime.1

    Many of the participants we spoke with assumed that life would be difficult and costly with HIV/AIDS because navigating the health care system is a difficult endeavor, regardless of the illness. In addition, participants expressed sympathy for the economic and social difficulties of those who are HIV-positive. Making sure that HIV/AIDS treatments are included in the health care debate may be an effective strategy and something the public may be ready to support.

  • Give people a more accurate sense of how HIV is transmitted.

    Leaders must contend with the fact that overall fear of HIV transmission still exists. Even among the more knowledgeable focus group participants, there was misunderstanding and apprehension about whether HIV can be contracted through casual contact. Concerns at this level make it difficult to combat stigmatization of people who HIV/AIDS and may cause many people to avoid the subject entirely.

    Participants themselves suggested an avenue to address this issue, as nearly all were aware of their lack of knowledge and expressed strong support for education efforts, both in public schools for their children and in general awareness campaigns for everyone. This support can be used not only to talk about prevention efforts and the necessity for testing, but to explore the realities of how HIV can and cannot be transmitted and the real consequences of stigmatization for those who are HIV-positive.

  • Help people understand the benefits of public health solutions.

    Finally, an obstacle that still needs to be overcome is the public’s framing of HIV/AIDS as something different from other diseases, in that HIV is transmitted through "risky behavior." We heard this in every group, and it does mean that the participants consider HIV/AIDS uniquely when compared with other health issues. It also means that the solutions the public gravitates toward involve education or other measures that could change the choices individuals make. And while experts certainly agree that prevention efforts are important, this is an area where the public’s mind-set and starting point is markedly different from those of experts. These experts favor a plethora of public health interventions, and there is a fairly steep learning curve involved in understanding public health solutions and how they work.

    However, when considering various expert proposals, people start to think about the pros and cons and weigh competing values, such as concerns over privacy competing with the need to prevent new HIV infections. Even during fairly brief discussions in a focus group setting, we saw considerable reassessment and working through solutions.

    Raising awareness and education about all facets of the disease and ways to address them can go a long way toward refining the view that HIV, because of how it is transmitted, is in a different category from that of other life-threatening illnesses.

Methodology

This preliminary report is based on five focus groups conducted with the general public in order to gauge their views on HIV/AIDS in America today. The focus groups allowed for an in-depth, qualitative exploration of the dynamics underlying the public’s attitudes toward complex issues. Actual quotes were drawn from the focus groups in order to give voice to these attitudes. The groups were conducted as follows:

In addition, a total of 13 interviews were conducted between October 2008 and February 2009 with experts specializing on the issue of HIV in a variety of ways. Again, actual quotes were drawn from the interviews. For this project we interviewed:

  • The executive director of an HIV community advocacy and activism organization that focuses on community organization;

  • The executive director of an HIV law and policy organization that works primarily with marginalized community members;

  • The president of a national AIDS grant-making organization;

  • An HIV program officer for an international women’s organization;

  • The executive director of a national public health organization who focuses on community-based health programs;

  • A city public health commissioner working in the HIV division of the department;

  • The head of research and development for an international vaccine research organization;

  • A state legislator championing HIV legislation;

  • A member of a U.S. government advisory board on HIV/AIDS policy;

  • A vice president within an international organization enlisting businesses in the fight against HIV;

  • A civil rights attorney specializing in HIV discrimination within an LGBT organization;

  • The founder of an organization working with African-American churches in the United States and Africa to fight HIV; and

  • A medical historian who authored a book on the history of the AIDS epidemic.

These findings offer insight into public perception of this issue; however, this work is qualitative in nature, so the findings are suggestive and cannot be generalized to the public overall. Nevertheless, a number of clear, characteristic patterns of thinking emerged from these discussions, illustrating the need for further research.

[1] Survey by NBC News, Wall Street Journal. Conducted November 1–November 5, 2007. Question wording: Let me read you several things that people worry about in their own lives. Please tell me the one or two, if any, that you worry about in your own life: access to affordable health care, quality of education, saving enough for retirement, the cost of gasoline, crime and violence, job security and the cost of housing and mortgages.

 

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