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."
A Complex Picture
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.
Access to Health Care
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.