When my aunt died several years ago, we all believed it was cancer. This was not heard directly from her, but through a series of relatives. Whenever I would ask, "What kind of cancer did she have?" there would be a pause, a look of confusion, and an abrupt change of subject. No more information was provided -- not a single detail more than was absolutely necessary. It was cancer, we were told, and the impression was that it should never be mentioned. No details of her treatment were given. The quality of her health care was never discussed.
In my family, illness was never specific. To discuss the intimate details of one's suffering was taboo. And to discuss the intricate realities of one's condition was rare. We had a kind of Christian sensibility of not burdening others with our problems. There was a virtue attached to suffering in silence.
Because we never really knew what was going on with each other, we could only guess or gossip. Sometimes we would use the truth like a weapon, in angry outbursts. As in a lot of families, myths and half-truths were more pervasive than facts. We developed notions about each other that later hardened into stories.
The one thing that families share, no matter their race, class, or culture, is that they hold secrets and hide their shame. Stigma fuels that secrecy and gives form, shape, and direction to the shame.
I would later discover that it was a hospital nurse who spoke the words my aunt could not bear to utter. Another aunt was with her until the very end. And as she left her room for the last time, this nurse followed her and stopped her in her tracks. "Your sister ..." she said, "It wasn't cancer. It was AIDS."
AIDS among African Americans does not lend itself to a single explanation, narrative, or understanding. As we look at it deeply, we see a vast array of forces, largely social, that sustain the picture. As for the facts, the statistics reflect what many of us have witnessed in our own lives.
Black communities make up 14% of the U.S. population, but account for nearly half of the new HIV infections in this country and nearly half of people living with HIV. If we take a closer look, the picture becomes even more vivid. Black men who have sex with men (MSM) bear the heaviest burden. They account for more than half of new infections among all young MSM and experience more new infections than any other group (race/ethnicity, age, or sex).
Gender also provides perspective on how HIV acts along the lines of social marginalization. Though the number of new HIV infections among heterosexuals has dropped (due in part to a reduction in infections among black women), black women continue to be far more affected than women of other races. As a group, they account for nearly two-thirds of all new infections among women.
Cultural competence in health care settings is also very important. Stereotypes and assumptions made about African Americans, and African American women in particular, can influence how they are treated by clinical staff. This can prevent them from being more actively involved in their health care. The ability of black women with HIV to navigate health care settings is also affected by the other realities they face: isolation, economic distress, family responsibilities, and the fear of losing social standing if their HIV status is discovered.
Injection drug users (IDUs) make up 8% of new HIV infections and 16% of people currently living with HIV. Once again, African Americans account for the greatest number of new infections in this group. The highest percentage of new infections in the transgender community is also among blacks, and in New York City, from 2005 to 2009, 90% of transgender people newly diagnosed with HIV were black or Latino. Being stigmatized and bearing the brunt of severe and pervasive structural violence increased the vulnerability of transgender women to HIV.
HIV does not affect every African American in the same way. But the picture of HIV among African Americans illustrates the importance of access to health care very clearly. Addressing the problems that create obstacles to health care and that lead to a reduction in health outcomes is crucial.
An examination of health care can shed some light on the issue. According to the Kaiser Family Foundation, 19% of African Americans in the U.S. are uninsured, or nearly one in five. Moreover, 31% of Latinos are uninsured, as are 17% of Asians/Pacific Islanders. The Affordable Care Act (also known as "Obamacare") would significantly expand insurance coverage for people of color and reduce disparities in access. This is critical, since the majority of uninsured people of color have incomes in the range that would make them eligible for the ACA's Medicaid expansion or for tax credits for coverage under the exchanges.
Medicaid expansion is a core element of the ACA. According to the Kaiser Family Foundation, 53% of uninsured blacks who will be eligible for the expanded program live in eight states: Florida, Georgia, Texas, North Carolina, Illinois, Louisiana, New York, and California. In these states, African Americans have a higher risk of being uninsured, which perpetuates the racial differences in health care access and health outcomes.
But according to The New York Times, "More than half of all people without health insurance live in states that are not planning to expand Medicaid. People in those states who have incomes from the poverty level up to four times that amount ($11,490 to $45,960 a year for an individual) can get federal tax credits to subsidize the purchase of private health insurance. But many people below the poverty line will be unable to get tax credits, Medicaid or other help with health insurance."
|Medicaid Expansion by State|
Lack of financial resources can be a severe challenge when compounded by significant health issues like HIV. Economic distress can create a barrier to HIV prevention and treatment for African Americans due to housing instability, joblessness, lack of transportation, and food insecurity. It affects how choices are ranked and prioritized.
This is particularly true in HIV prevention, where decision-making is far from simple or rational. Sexual decisions aren't made in the same way you choose a restaurant or movie. There are several forces that influence sexual decision-making, and economic realities are among the most powerful. This is also the case for adherence to treatment regimens. Economic insecurity hinders the ability to maintain the routines and rituals that make things like taking medication regularly possible. Stability helps ensure routine, and poverty destroys stability.
The choices we make in life are governed by our values. In health care especially, values are often shaped by cultural influences like religion. Faith is one of the more dominant lenses that the African-American community uses to view itself. Morality creates order in the face of collective trauma; for a community often seen as less than human, it provides a way to assert the value and worth that has been denied.
I knew a person with HIV who told me that God told him to stop taking his meds. Such moments are hard to endure, and little in the training of even the most effective HIV treatment educator can prepare you for the moment when someone stubbornly and sincerely says he believes God has told him to stop HIV treatment. But I think it's a mistake to condescend. The best response to faith isn't always rational. In these instances, I'm not certain that people are unaware of the consequences of their beliefs. The choice they are making, for whatever reason, appears to be best for them at that moment.
Perhaps we rely too much on facts and talking points to guide these discussions. We rattle off statistics and scientific evidence, and while that might clarify things in the realm of the rational, it doesn't offer much comfort in the realm of the emotional. In a world already uncertain due to their place in society and their health condition, people may hold onto faith in order to carry on. And though the consequences of their faith might be misguided, the need for it is not.
Faith offers clarity, order, peace, and, most critically, meaning. It connects us to the world and gives us the will to confront the mysteries of life and the ability to find joy even in the midst of suffering. This is what sermons are based on, gospel songs are written about, and the faith tradition of African Americans is rooted in. So to respond to the unshakable and stunning faith of black people, and the worldview that inspired it and the actions that stem from it, we must value the emotional, the irrational, the mysterious, and the unexplainable. It's not enough for HIV advocates to provide facts; we must inspire meaning. The message shouldn't just be tweaked, but repackaged. Certainly we must provide objective, scientific information. But perhaps there can be new ways to think about faith, to present AIDS not merely in the realm of science and public health, but also as part of a larger story.
HIV conspiracy theories are another challenging ideological bump. "Big Pharma" is seen as profit driven and even responsible for the spread of HIV among African Americans. At other times the government is the culprit. Either way, suspicion creates a sense of distrust that hardens into a powerful paranoia. Such beliefs aren't always rooted in ignorance, but perhaps in trauma.
Myth conquers fact because myth clarifies and comforts, while facts merely explain and can produce anxiety. The cold rational realities of life don't always inspire action, which is why the leaders we choose are often those who inspire rather than reveal. People, particularly those in the grip of fear, don't always want an explanation -- they want comfort. Yes, you can explain that HIV was not created in a lab, or that there isn't some huge government conspiracy, or that Magic Johnson has not been cured by some medicine being kept from us, and you will win some over with the power of truth. But for others -- those who have an affinity for conspiracy-oriented explanations -- truth is important but not always enough.
The response to conspiracy is not unlike that to faith. We must bring the facts with us, because our arsenal of scientific evidence is our most valuable tool. Facts may be inconvenient, but they are where we all eventually land. So we must also be prepared to speak to fear. People don't always remember facts, but they often remember stories, and we must share those stories with them. Stories about the impact of HIV, how different communities have responded to it, how people have grappled with it, and how it has affected African American communities, are all extremely valuable.
|The Treatment Cascade: People With HIV in the U.S.|
I've had three relatives die of AIDS, including my aunt -- two women and a male cousin who my family insisted was not gay, but rather a heroin user. Maybe the insistence upon his heterosexuality was because it was easier to have compassion for him as an IDU than as a gay man. I also continue to think about my aunt, who faced stigma fueled by race, class, and gender, until the day she died. That reality inhibited, if not prevented, her ability to seek health care. Her example sheds light on what the statistics show. She offers a case study on what we are up against.
At a recent cultural competency training in the South, ACRIA educators experienced the reality of stigma and other barriers to care first-hand. In an exercise designed to help participants discuss barriers to health care, African American participants made the following statements:
As long as these beliefs and feelings remain widespread among African Americans, the goal of getting all people with HIV the care they need will be difficult, if not impossible, to attain.
The ACA offers perhaps the best way forward in increasing access to health care for African Americans, particularly through the expansion of Medicaid to lower income individuals. Unfortunately, the Supreme Court ruled that state implementation of Medicaid expansion is optional. Even so, full implementation of the ACA remains the most critical and promising way forward.
We must also continue to fight stigma, particularly on the institutional level. Stigma is too often framed as an amorphous thing, and this makes it difficult to address in a tangible way. We should target institutions precisely and deliberately -- churches, professional organizations, civic organizations, fraternities and sororities, social networks and affinity groups -- and create anti-stigma messaging that is precise. Our messages must integrate the norms and cultural references of specific institutions and identify gatekeepers to be ambassadors for the messaging.
A crisis mindset is not sustainable. It moves people to action, but only temporarily. It's a shot in the arm, an adrenalin rush. But it does not create the space emotionally or psychically to map out a plan, to imagine, to hope. We need to create new ways to frame HIV in African American communities. A message that acknowledges the very human desire not only to know, but also to feel, to reawaken not only the willingness to survive but also the passion to live. Most importantly, advocates, service providers, clinicians, and educators must be resilient as we work to ensure efficient systems, quality affordable health care, and culturally competent staff.
Charles Stephens is an Atlanta-based writer, activist, and co-editor of the forthcoming anthology Black Gay Genius.