By Elizabeth Burden
I started working in the HIV prevention field in 1988 when my daughters Clariece and Charisse were three-years-old and 21-months respectively; they are now 35 and 32. This was seven years into the U.S. epidemic (Global HIV/AIDS Timeline 2018), and three years before Magic Johnson announced that he was HIV-positive.
Some things have changed. Back then, an AIDS diagnosis was almost always fatal. Now, a diagnosis of HIV is akin to other chronic diseases. There are effective medications for treatment and prevention. There are well-established approaches to self-care that enable people with HIV to live long and healthy lives, along an HIV care continuum that has four steps to achieving viral suppression (the current gold standard for HIV care). There are encouraging trends, including declining new HIV diagnoses among African Americans overall, especially among women, and a leveling off of new diagnoses among African-American gay and bisexual men (Centers for Disease Control and Prevention).
In the United States, African Americans have been disproportionately impacted since the beginning of the epidemic and that continues to be true today.”
A Disproportionate Impact
Other things have not changed. In the United States, African Americans have been disproportionately impacted since the beginning of the epidemic and that continues to be true today. In fact, the disparity in HIV infection rates among racialized persons has only deepened over time (Kaiser Family Foundation, 2020). We tend to be diagnosed later, are less likely to be on antiretroviral treatments and, therefore, have a lower rate of viral suppression (Health Resources and Services Adminisration). In 2016, for every 100 African Americans with HIV, 61% received some HIV care, 47% remained in care over time and 48% maintained viral suppression. The national averages were 74%, 58% and 72%, respectively (Centers for Disease Control and Prevention, 2019).
The reasons for the above facts are complex. Academic research points individual “risk factors” and “cultural beliefs, traditions and themes” that keep Black folks unhealthy. As intriguing as they are, they do not bear repeating here. That same research rarely considers the structural factors – the social determinants of health (SDoH).
Racism and SDoH
SDoH are the conditions in which people are born, grow, work, live and age, and the wider set of forces and systems shaping the conditions of daily life. Better conditions mean a better life and health outcomes. Although definitions of SDoH differ, they generally include economic stability and employment conditions, educational attainment, health and health care, neighborhood and physical environment, and community and social context.
Indicators within those categories include income level, educational opportunities, occupation, employment status, gender inequity, racial inequality, food insecurity and inaccessibility of nutritious food choices. Other indicators, related to safety, include access to safe and affordable housing, crime rates and exposure to violent behavior, access to safe drinking water, clean air and toxic-free environments, workplace safety, social support and community inclusivity. (World Health Organization, 2019; CDC, 2019; Kaiser Family Foundation, 2019).
Of course, we did not need a new buzz phrase to understand this. Daily in our lives and in the lives of our loved ones, we are reminded that racialized housing markets and gentrification, a racialized economy and economic deprivation, racialized and discriminatory medical and social services, and a racialized criminal legal system leads our communities to racialized stress overload and ill-health, mentally, physically, spiritually, familially and socially.
But I digress.
In 2019, the U.S. Department of Health and Human Services launched Ending the HIV Epidemic: A Plan for America. SDoH was not referenced in the plan’s definition of the current problem nor in its strategies for reducing viral transmission by 90%.
Ending the HIV Epidemic Means Focusing on SDoH
I used to have a t-shirt with the saying, “Protect your Johnson, no matter how magic you think it is.” I still believe that those with a penis should use all the methods available to protect themselves and their loved ones. Those with a vagina should do so, too.
I also believe, strongly, that to get better outcomes related to HIV among African Americans we need to improve the conditions shaping our daily lives. We need our own plan to end the HIV epidemic, a multifaceted one that understands the underlying patterns, that focuses on changing the policies and structures that attack our health and well-being, and that invests in the changing conditions surrounding our SDoH.
I know that this is a daunting, demanding challenge. I stepped away from HIV/AIDS work in 1992, just four years after entering the field. I lost many acquaintances, colleagues and friends to the disease in those four years, and many more over the last two-plus decades. I was drained of energy but not of hope, for this is a fight for our sons and daughters, and their sons and daughters, and all of the other generations to come.
Elizabeth Burden is an artist/art worker who remains involved with health, social and political issues.
Caption: These graphics illustrate the way forward in the fight against HIV/AIDS.
Credit: Centers for Disease Control and Prevention