The National AIDS Strategy: An Opportunity for Activism
In July 2010, the White House Office of National AIDS Policy released the first National HIV/AIDS Strategy to address the epidemic in the U.S. It outlines an agenda for reducing new infections, increasing access to care, and reducing HIV-related health disparities. The goal of this strategy is expressed in its vision statement:
The United States will become a place where new HIV infections are rare and when they do occur every person, regardless of age, gender, race/ethnicity, sexual orientation, gender identity or socio-economic circumstance, will have unfettered access to high quality, life-extending care, free from stigma and discrimination.
This statement mentions the many different factors that AIDS advocates have been talking about since the beginning of the epidemic. Although this first national AIDS strategy was not announced until 30 years later, it does represent a breakthrough.
For advocates, it is important to understand how the Strategy understands "the problem." In 1982, the CDC stated that homosexuals, hemophiliacs, heroin users, and Haitians were most at risk for HIV. Almost 30 years later, similar groups of people -- African-Americans, Latinos, and men who have sex with men (MSM) -- continue to be at the center of the epidemic. Also emphasized in the Strategy are people struggling with addiction, injection drug users of all kinds, and people located in certain "hot spots" such as the Northeast, the South, Puerto Rico, and the Virgin Islands. The Strategy notes that "by focusing our efforts in communities where HIV is concentrated, we can have the biggest impact in lowering all communities' collective risk of acquiring HIV."
After 30 years, why do many of the same groups continue to dominate new HIV infections? The Strategy acknowledges that there have been several significant medical advances in HIV treatment and care that enable people with HIV to live much longer lives. So what obstacles prevent all affected groups from getting them?
First, the Strategy outlines a plan to reduce new HIV infections, particularly among "gay and bisexual men of all races, Black men and women, Latinos and Latinas, people struggling with addiction, including injection drug users." Along with this, the Strategy states in bold that "not every person or group has an equal chance of becoming infected with HIV." In fact, gay and bisexual men of all races are the only group where HIV infections are increasing.
The Strategy notes that gay and bisexual men made up the largest portion of the epidemic in the 1980s and in the U.S., they still do.
It is clear that African Americans overall and gay and bisexual men (irrespective of race or ethnicity) continue to bear the brunt of HIV infections in the United States. ... Blacks comprise the greatest proportion of HIV/AIDS cases across many transmission categories, including among women, heterosexual men, injection drug users, and infants ... the United States cannot reduce the number of HIV infections nationally without better addressing HIV among gay and bisexual men.
Second, the strategy aims to increase access to care and improve health outcomes for people with HIV. Although there have been significant medical advancements in HIV treatment, many obstacles to care remain. People with HIV must also deal with other conditions, such as heart disease, mental health problems, and substance use. Social factors like poverty, unemployment, domestic violence, homelessness, hunger, and lack of access to transportation are also listed as barriers. Finally, race, gender, and geography are significant factors that influence the outcome of treatment. The Strategy notes that
HIV-positive African Americans and Latinos are more likely to die sooner after an AIDS diagnosis compared to HIV-positive whites; HIV-positive women are less likely to access therapy compared to HIV-positive men; and access to care and supportive services is particularly difficult for HIV-positive persons in rural areas, as well as other underserved communities.
Third, the Strategy outlines a need for a reduction in HIV health inequalities. For example, HIV diagnoses among Black males are the highest of any group, a figure seven times higher than that for White males. Diagnoses among Latinos are three time higher than among White males. The Strategy notes that although overall deaths have declined due to new treatments, not all groups have benefited equally:
Racial disparities in HIV-related deaths also exist among gay men, where Black and Latino gay men are more likely to die from AIDS compared to White men, and among women, with Black women and Latinas at greater risk for death compared to White women. Gay and bisexual men comprise the majority of people with HIV who have died in the United States.
In order to support this bleak reality, discrimination and stigma are cited as cofactors. The Strategy recognizes that certain people, particularly African-Americans, Latinos, and MSM, face a much more difficult reality than others. Discrimination in housing, employment, health care, and other social services presents an obstacle to reducing health disparities. To this end, the Strategy boldly claims that:
Working to end the stigma and discrimination experienced by people living with HIV is a critical component of curtailing the epidemic. The success of public health policy depends upon the cooperation of the affected populations.
To clarify what kind of discrimination the Strategy is referring to, the Implementation section specifically refers to "discrimination based on HIV status."
The Strategy's Significance for Advocates
It is clear that the disproportionate impact of HIV on African Americans, Latinos, and MSM is a priority for the Strategy. The statistics are shocking and the acknowledgment is welcome. But the expectation that the Strategy will end the epidemic or provide significant changes to the U.S. response to HIV is misguided. After all, the Strategy doesn't provide any additional funding, only a guide for the use of already existing funds -- funds that are threatened by recent budget-cutting moves at all levels of government.
It's tempting to praise any instance where co-factors are mentioned by government agencies, since they have been ignored in the past. But to grasp the impact of the Strategy, we must understand the overall political landscape. In 2010, the Latino Commission on AIDS released a report titled New York State Responds to the Latino HIV/AIDS Crisis and Plans for Action. It approached the issue of HIV and Latinos in New York by acknowledging the issues that affect transmission, testing, and treatment in the Latino community.
For example, fear of deportation often prevents undocumented immigrants from seeking services. One of the sources of this problem comes from "Secure Communities," a U.S. immigration policy that calls for "the U.S. Department of Homeland Security and the Department of Justice to quickly and accurately identify aliens who are arrested for a crime." As long as states continue to comply with this policy, HIV services targeted at immigrants will face obstacles. The Strategy makes no mention of this problem or any solution, nor does it address the other issues cited as creating disparities. The Strategy recognizes that disparities in treatment, infections, and deaths exist, but it fails to consider their causes.
U.S. budget cuts will disproportionately affect the same communities already most affected by HIV. As a result, the most vulnerable people will face even harsher realities, as their government has decided that adequate services for certain groups are too expensive. This issue is not outside the scope of the Strategy -- if the U.S. cannot support basic human needs, the HIV epidemic will continue to grow, regardless of advancements in medical care.
Using the Strategy
This does not mean the Strategy is useless or unimportant. It provides a tremendous opportunity for advocates, who have long understood that the fight against HIV is more than just a matter of treatment options. Fortunately, there are signs of increasing awareness of other issues. Almost a year after the release of the Strategy, there have been several reports released by federal agencies that raise concerns about the realities of health disparities:
- In January, the CDC released the report CDC Health Disparities and Inequalities in the United States -- 2011, which pointed to "ongoing racial/ethnic, economic, and other social disparities in health."
- In March, the Institute of Medicine released The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding, which pointed to health disparities along the lines of sexual orientation.
- In April, the Department of Health and Human Services announced the HHS Action Plan to Reduce Health Disparities, an outline of goals and actions to reduce health disparities among racial and ethnic minorities.
This research and information, confirming what advocates have been saying for years, is a step in the right direction. Health is political. As advocates, we must politicize our agenda. We must move beyond words like "co-factors" to ask more critical questions about what that term really means. Homophobia, transphobia, racism, poverty, etc., are complex issues that cannot be adequately addressed simply by acknowledging their existence. They are serious social forces that penetrate our society in deep ways and fundamentally implicate our legal and governmental system.
Fortunately, continuing research that acknowledges the existence of inequalities opens the door for these forces to enter the conversation, leading to greater understanding of their importance. It is our role to push the conversation further toward reality and to pressure the government to seriously address the consequences of co-factors. If discrimination affects HIV transmission and care, we must address it at all levels.
Understanding state and local agendas is vital to understanding the nuances of how the epidemic operates. Local organizations, service providers, people with HIV, and activists must collaborate and take the lead in creating responses that address the relevant local issues. The Strategy has opened the door, but it is up to us to walk through it. By creating approaches that acknowledge the inequalities driving the epidemic in our communities, we can hold government accountable to the Strategy, no matter its shortcomings.
Let's return to the vision statement of the National HIV/AIDS Strategy:
The United States will become a place where new HIV infections are rare and when they do occur every person, regardless of age, gender, race/ethnicity, sexual orientation, gender identity or socio-economic circumstance, will have unfettered access to high quality, life extending care, free from stigma and discrimination.
The Strategy cannot fully answer the question of how to address the HIV epidemic because it misunderstands the nature of the problem, even in its vision. If the government is serious about its commitment, it must consider the relationship between HIV and other co-factors. Disease may always be a reality, but the unequal impact on different communities can be stopped. Based on this, I offer a vision statement that truly reflects the problems behind the epidemic:
The United States will become a place where ageism, sexism, racism, homophobia, transphobia, and poverty are rare, and people who become HIV positive will have unfettered access to high-quality, life-extending care, free from stigma and discrimination.
John Hellman is director of advocacy for the Latino Commission on AIDS.