Toward Health Justice
Three Activists—Claire Gasamagera, David J. Johns & Dr. Preston Vargas—Discuss How Black Lives Matter & HIV Advocacy Intersect
by Hank Trout
The statistics are as heartbreaking as they are unconscionable—
The Black community comprises only twelve percent of the U.S. population. However, according to a February 2020 Kaiser Family Foundation report, using figures from 2018, Black Americans accounted for 43% of new HIV diagnoses, 42% of the people estimated to be living with HIV disease, and 44% of the HIV-related deaths, more than any other racial or ethnic group in the U.S. There are more than 1.1 million people living with HIV/AIDS in the U.S.; 476,100 are Black. The number of new diagnoses among Black adults and adolescents was 47.5 per 100,000, eight times the number of whites (5.6) and more than twice the number of Latinos (20.9). Although there has been some improvement in the prevalence of HIV in heterosexual Black men, the rate for Black men (74.8) was the highest of any group, twice that of Latino men (36.4), the next highest group.
The annual number of new transmissions among Black gay and bisexual men have remained stable in recent years, as have new transmissions among gay and bisexual men overall. However, HIV prevalence among Black gay and bisexual men was 39%, compared to 23% of gay and bisexual men overall.
Again using 2018 statistics, among women, Black women accounted for the largest share of new HIV diagnoses (4,114, or 58%). The rate of new diagnoses among Black women is fourteen times the rate among white women and almost five times the rate among Latinas. Black women represented more than one quarter (26%) of new HIV diagnoses among all Blacks—Latinas (12%) and white women (16%) comprise of their groups.
The majority of Blacks newly diagnosed live in Southern states (63%). But as with all HIV-positive populations, HIV diagnoses among Blacks occur nationwide, but primarily in ten states, which account for the majority (84%) of cases. Florida and New York reported the most cases. The District of Columbia had the highest rate of Blacks living with an HIV diagnosis (3,799.3 per 100,000).
It is important to note that the vast majority of Black Americans do not have HIV. However, one in three Black gay men does.
The statistics are grim. But statistics alone cannot tell the full story of the impact of HIV/AIDS on the Black community in America. Numbers alone do not reflect the enormous, disproportionate effect of HIV/AIDS brought on by rampant systemic racism, the lack of culturally specific information about the virus, the under-funding of resources for the Black community, the lack of social support from family and friends, the scourge of homelessness (especially among gay Black youths and trans people), deadly poverty, the lack of access to adequate healthcare (including prevention, such as PrEP, and antiretroviral medications), the rampant HIV/AIDS stigma (particularly in the South, where many Black lives center on their church), or the Black community’s distrust of medical professionals brought on by the historic, sometimes intentional malpractice they have experienced. Numbers alone cannot illustrate the devastating economic, mental, emotional, and cultural impact of this pandemic on HIV-positive Black women and men, their families, their communities.
While the U.S. has made major progress in combatting HIV/AIDS among other heavily impacted populations, our nation’s inadequate response to HIV transmissions among Black men and women is one egregious failure of our response. We have known for decades that the HIV/AIDS pandemic has hit the Black community harder and more viciously than any other racial or ethnic group in America. And yet, despite our knowing this—and despite the diligent work of many Black-centered organizations such as Us Helping Us/People Into Living, the National Black Leadership Commission on AIDS, the Black AIDS Institute, the National Black Justice Coalition, and more—this disparity has only grown worse. Why have we done so little to erase that disparity? Why have we failed to help the community that reports more HIV/AIDS diagnoses and suffers more HIV-related deaths than any other segment of the population?
To understand the causes of this disparity and ways to remedy it, A&U corresponded with three people who confront these issues in the Black community every day: David J. Johns, Executive Director of the National Black Justice Coalition; Preston Vargas, PhD, Director of Black Health at the San Francisco AIDS Foundation; and Claire Gasamagera, an award-winning activist and writer born with HIV in her native Rwanda. All three offered expansive, heartfelt responses, particularly on the subject of systemic racism and the Black community’s distrust of the medical establishment.
Dismantling Systemic Racism
“Of course systemic racism limits what health resources are accessible within many Black communities,” wrote Dr. Vargas of SFAF. “Within the systems of power in this country, the medical complex, and even in community-based organizations, Black lives are disposable. Unfortunately for much of white America watching Black people die is not only permissible, it is the unconscious and subtle goal of the systems that create and support white privilege. Deep in the American psyche there are insidious beliefs surviving centuries of enslaving Africans and African Americans that are still raging through the unconscious. The beliefs are that Black people are collateral and less than human.” Echoing Dr. Vargas, Mr. Johns told A&U, “There are intentional efforts to ensure that Black people are disproportionately spatially concentrated in ways that negatively affect us, while benefiting white people. Access to healthcare is scarce, in the first place, and Black folks are met with additional obstacles once there is access….Ideas about whiteness and Blackness, i.e. which bodies and lives are valuable, shape policies and practices that inform how systems (like housing agencies, health care systems, public schools, and public transportation) operate.” Ms. Gasamagera added, “This country was never built with Black people in mind. What we see in healthcare and the Justice system are the results of a system designed to only serve white people. We cannot amend or correct what we see now. We are the generation that has to be courageous enough to face history and dismantle structural racism and racial inequalities.” She also pointed out the biases that shape medical providers’ treatment of Black patients: “Some of the medical providers come into medical practice with racial biases such as ‘Black people have thick skin,’ ‘Black people do not feel pain,’ ‘it is their fault,’ ‘they are abusing drugs’… That kind of mentality does not help Black people to get into care and treatment.”
One of the most insidious effects of the systemic racism faced by the Black community is the damage it does to individuals’ self-esteem. Dr. Vargas again: “Over time the many messages from the overculture that insist Black lives are disposable can seep into the soul, the psyche, the essence of a Black person, causing little fractures, open spaces where vacant esteem, a type of self-worthlessness, settles in. So now, on top of inaccessible healthcare and resources the individual feels little worth to their life. Vacant esteem can eventually lead to self-neglect in an almost passive suicide. What happens is that the social attacks from the outside world are compounded by diminished ability to do what is best for oneself…I’ve often suffered from vacant esteem. It has been my life’s fight. This is a result of repeated trauma.” Dr. Vargas does take hope from movements like Black Lives Matter and the increase in Black people in leadership roles. “These are affirmations and a paradigm shift that demands Black lives be elevated to the status of sacred. When I experience these affirmations of Black greatness it is not only a push back to the systems of racist oppression that would seek to make me invisible or annihilate me as a Black man. It is a way of mending my psyche, it is healing for me and my community. This strengthens the sense of self and self-esteem and can inspire Black people to advocate for themselves and each other. Healing our psyche, our souls and changing the worldview of our worth inspires Black people to enroll onto PrEP, practice risk reduction, get tested early and often, take their HIV medication regularly, and refuse to settle for white-prioritized healthcare.”
Recognizing Learned Distrust
On the issue of the Black community’s understandable distrust of the medical establishment, both Ms. Gasamagera and Mr. Johns pointed to the infamous Tuskegee Syphilis Experiment, in which researchers purposely infected Black men with syphilis to study the progression of the disease—in short, using Black men as lab animals—as merely one example of the kinds of medical malpractice that the Black community has suffered and that continue to this day. “[R]acialized medical abuse and negligence are still pervasive. In our present day, Black women die at between three and four times the rate of non-Hispanic white women and Black babies die at twice the rate of white babies during childbirth, unless the doctor is Black….The Black community is understandably hesitant to seek medical help or advice, as it is so rarely provided benevolently, so many of us feel forced to wait until we are too sick and it is too late.” Ms. Gasamagera added, “The government has never apologized to Black people in general. As a result, people continue to mistrust the medical world.”
Addressing Multiple Societal Determinants
Of course, although systemic racism permeates American society, it is not the sole cause of the disparity in health outcomes in the Black community. Other societal factors—poverty, homelessness, neglected neighborhoods, lack of educational opportunity, unstable housing, food insecurity, lack of transportation—contribute significantly; they “exacerbate the problems created by, are reproduced by, and are reflections of racism and anti-Blackness,” Mr. John said. “Most of the community, and especially those with intersectional marginalized identities, struggle under the weight of resource scarcity and anti-Blackness and homophobia and misogyny or misogynoir and childhood trauma and disproportionate violent victimization and housing insecurity…and the list goes on. All of this exacerbates risk of illness, difficulty receiving life-saving care, inability to sustain treatment, exhaustion, and so on.” Ms. Gasamagera asserted, “I think that regardless of race, every community faced with poverty, homelessness, homophobia, transphobia, broken families, stigma will face an increase in the spread of HIV.”
Dr. Vargas put it bluntly: “If I am fighting to survive, how can I have energy and the wherewithal to invest in what makes it possible for me to flourish? I think most Black-led health services really understand this. It is why we address HIV in Black communities as being intersectional with career development and economic justice, community upliftment and engagement, creating healthy family dynamics and family of choice, spiritual development and personal growth, education and anti-oppression training, and developing all Black spaces that affirm our right to be.”
On the failure of the medical establishment to address the intersectional causes of the HIV pandemic in the Black community, especially among Black MSM, all three activists voiced frustration bordering on (understandable) anger. “Historically, the United States’ responses to crises, including pandemics, have failed (and continue to fail) Black people. Period. Full Stop….[I]t would be easier to name the few instances when a specific program or initiative has intentionally centered the often-overlooked needs of the diverse Black community, than to identify all of the ones that get it wrong (which is most of them). The reality is that federal policy decisions rarely prioritize the needs of Black people….Even when Black people are built into policy as beneficiaries, it is overwhelmingly because doing so happens to benefit white people….Even the term MSM is problematic because it can be used to include Black trans women who are not men, but who have sex with men. Words matter. We miss opportunities to address the specific needs of the Black community when we’re not critical of the boxes society tries to force people into.” Asked for an example of any specific program or initiative taken by the U.S. medical community that either ignored or was insensitive to the specific needs of the Black community, Dr. Vargas responded, “The historic absence of medication, treatment, and risk reducing resources in Black communities due to the medical community’s prioritizing white patients and clients is the most glaring example.” He went further to condemn the emphasis on Black MSM at the expense of Black women. “I look towards what efforts are not being made amongst Black cisgender women with PrEP and HIV support resources. Here we are talking about Black MSM and the conversation is ignoring the rising HIV transmission rates amongst young Black ciswomen. My experience of Black communities is that they are femme-led. Cis Black women have been and will continue to be a driving force in Black faith, politics, economics, and culture. Ignoring the needs and challenges of Black women LWHIV or at risk of HIV transmission correlates with the misogyny of gay men’s culture and is indivisible with white supremacy. How can we as Black communities flourish if we are ignoring the needs and challenges of Black women?”
Tailoring Appropriate Outreach
All three activists stressed the need for more culturally appropriate outreach to the Black community, particularly outreach by AIDS service organizations (ASOs). “Many organizations have historically approached Black communities with the same measures these organizations found effective amongst gay white men,” Dr. Vargas wrote. “However, the value systems and challenges in Black communities are not mitigated by the privileges of being white and male as they are in GWM communities. So, these outreach efforts and program efforts fail to address the reality and lived experience of many Black people.” Mr. Johns pointed out that “for AIDS Service Organizations focused on white communities there are lots of victories to celebrate. In communities that do not have to grapple with the challenges of racism, anti-Blackness, homophobia, bi-phobia, transphobia, and other forms of bias and stigma, rates of HIV transmission have decreased.” Mr. Johns also noted that there are too few ASOs focused on the diverse needs of Black communities, and that those few have historically been underfunded. “[T]he foundations and federal agencies that control the lion’s share of resources dedicated to HIV/AIDS education, connections to care, direct service provision, and messaging/stigma reduction are led by people who are not Black and not Black and LGBTQ+ or same gender loving. Historically, with few exceptions, white-led organizations have not prioritized meaningful, measurable, and persistent investments in ways that are designed to enable diverse Black communities to overcome foundationally systemic obstacles.”
Applying an Intersectional Lens
“AIDS service organizations led by white executives and/or boards,” he continued, “should apply an intersectional lens to their strategic goals. Applying Afro-Indigenous, feminist principles of intersectionality will help people prioritize guidance from impacted communities and see solutions more clearly.”
All three also pointed out the need for more Black engagement, more Black voices in decision-making and policy-creating. “It always bothers me to see white people designing outreach programs for Black people by assuming what their needs are. Services for Black people should start with a dialogue with the community to assess their priorities. Also, Black people should be meaningfully engaged in project design, implementation, reporting and evaluation.” But sometimes, Black representation alone is not enough, as Dr. Vargas lamented. “I find it very curious that a number of great Black researchers, policy makers, advocates and providers came together to develop a plan presented by the Black AIDS Institute called ‘We the People’ which identifies the intersectional challenges that increase HIV risks and decrease the efficacy HIV services in Black communities yet so few AIDS service organizations have implemented this plan in parts or as a whole. I ask myself if it has to do with the capitalist nature of organizations that leads to competitiveness? Is it because this plan was created by and for Black people that has it been dismissed? Is it because plans like this challenge the top-down power structure and advocate for community led initiatives? Many non-profits, CBOs and AIDS service organizations—even BIPOC-led organizations—still operate under the old plantation model of business: top-down power and trickle-down benefits. All too often Black folks are at the bottom of those structures. Community members, patients, and clients know this. They see it and experience it. Add that to generations of medical mistrust, white savior complexes amongst service providers, and the GWM approach and the results are troubling and disappointing.”
As to the future of addressing the disparity in healthcare outcomes in the Black community, Dr. Vargas opined, “I actually don’t think there is one thing we can do or one recipe for success in responding to HIV/AIDS in Black communities. We need multi-prong approaches, novel ideas, new models of leadership, and a focus on intersectionality.” Mr. Johns added, “There are so many ways that we can each play a role in this all-hands-on-deck effort and what’s most important to me is that everyone gets in the arena. I invite everyone to consider all of the things they already do (the things they’re passionate about and otherwise invested in) and to identify ways that contributing to the work of ending the HIV/AIDS epidemic makes the most sense for them.”
All of this points out the need for elected officials, healthcare professionals, and the HIV community at large to push for more equitable healthcare access and culturally appropriate outreach to the Black community. We must make quality, comprehensive, responsive, culturally competent healthcare a universal right and not just a privilege of wealth and whiteness. We must break down the economic and societal barriers that prevent the Black community from receiving preventive care and/or the means to manage HIV and AIDS. Because yes, Black lives DO matter.
Writer’s note: It is incumbent upon me to acknowledge my status as a cis-gender white gay man writing about HIV/AIDS in the Black community. I thank Dr. Vargas, Mr. Johns, and Ms. Gasamagera for trusting me with their words and ideas.
For more information about the National Black Justice Coalition, log on to: nbjc.org. For more information about the San Francisco AIDS Foundation, log on to: sfaf.org. To contact Claire Gasagamera, email her at [email protected].
Senior Editor Hank Trout is one of the authors of the San Francisco Principles, a call to action to address issues around aging and HIV.