[...60 percent of newly diagnosed cases of HIV in women in 2017
were Black. Yet, Black women’s voices are notoriously absent from
the national discourse on HIV.] [https://portside.org/]
THE US IS FAILING BLACK WOMEN WITH HIV
February 24, 2019
_ ...60 percent of newly diagnosed cases of HIV in women in 2017 were
Black. Yet, Black women’s voices are notoriously absent from the
national discourse on HIV. _
From left to right: Toya Tolson, Shawnte’ Spriggs, Sophia Harrison,
Marcella Wright and Deborah Dyson. These women are aging with HIV,
sometimes with other diseases and always with other challenges., Aamir
Khuller, CC BY-NC-SA
The face of HIV in the United States has long been white gay men, even
though the epidemic has had a devastating and disproportionate impact
on Black communities.
This is especially true among women; 60 percent of newly diagnosed
of HIV in women in 2017 were Black. Yet, Black women’s voices are
the national discourse on HIV.
Largely invisible to a fractured health care system, these women are
often breadwinners and matriarchs whose families count on them
support and care.
Treatments to help people who are HIV-positive manage their illness
and survive into older age have improved greatly, yet the unique
health needs of Black women living and aging with HIV – estimated at
about 140,000 [https://www.cdc.gov/hiv/group/gender/women/index.html]
– are often ignored.
While many are actively taking medication and receiving care, some do
not know their HIV status. After diagnosis, many have difficulties
managing their HIV, which can contribute to their other health
I have been working on collecting oral histories
from many older HIV-positive women in the Washington D.C. area, where
I live and research. It is my hope that by focusing on the voices of
Black women themselves, we as a country are able to better understand
the profound impact that HIV has had on Black life.
HIV and Black Americans
Many believe the HIV epidemic in the United States is nearing an end,
in part because increased funding, targeted prevention efforts, and
better treatment have resulted in drastic reductions in new
HIV-positive cases. Even President Trump, in his recent State of the
Union address, discussed his goal
of ending HIV by 2030. I am an HIV researcher, and I can say this is
totally unrealistic, especially for Black Americans.
Despite comprising only 12 percent of the overall U.S. population,
Black Americans represent 43 percent of all persons with newly
diagnosed HIV and 42 percent
of all people living with HIV. Black Americans living with HIV are
nearly 10 times
more likely to be diagnosed with AIDS and over six times more likely
to die of complications of AIDS than their white counterparts.
Black Americans are also at a higher risk
[https://www.cdc.gov/vitalsigns/aahealth/index.html] for other health
conditions, which can make managing HIV infection more difficult. For
instance, Black Americans are twice as likely to die from heart
disease and 50 percent more likely to have high blood pressure than
In Washington D.C., a place filled with public health experts and
policymakers, the HIV prevalence rate is the highest in the nation,
exceeding the World Health Organization definition of a generalized
epidemic. Black Americans represent a staggering 75 percent
all HIV cases in D.C.
HIV in Washington, D.C., is a regional epidemic, and crosses the
jurisdictional border into Prince George’s County, Maryland. The
sprawling suburbs of Prince George’s County are well known for their
ranking as one of the wealthiest Black-majority counties in the
nation, but with HIV rates that are four to 10 times higher than those
of white adults.
The high rates of HIV in Washington, D.C., and Prince George’s
County reflect a growing public health crisis in the United States,
where the disproportionate burden of HIV is increasingly concentrated
in the U.S. South. Southern states, where 55 percent
of Black Americans live, have the highest rates of new HIV-positive
diagnoses, the highest percentage of people living with HIV, and the
lowest rates of survival for those who are HIV-positive.
Government investment in the domestic response to HIV tops more than
US$26 billion per year
[https://www.hiv.gov/federal-response/funding/budget], yet these
health inequities in HIV for Black Americans continue to persist.
These inequities are due in part to abstinence-only funding to schools
with large minority populations and HIV-specific criminal laws
[https://www.hivlawandpolicy.org/state-hiv-laws], which undermine the
health and well-being of Black Americans and perpetuate systems of
inequity. Systemic racism in resource distribution, such as
concentrated poverty and health care and funding disparities is also a
significant driver of the epidemic within Black communities.
Since the beginning of the epidemic in the 1980s, Black women have
carried a large burden of HIV, and more than 60,000 lost
[https://wonder.cdc.gov/mortSQL.html] their lives. But not everyone
died. My project of personal narratives of these women suggest that
they live with multiple uncertainties brought on by HIV. Many worry
about how their health, disability, and eventual death will impact
their roles as mothers, grandmothers, daughters, sisters and wives.
Lives of Suffering, Strength and Survival
Shawnte’ Spriggs’ story is typical of many Black women living with
HIV whom I spoke to. Many suffered trauma and abuse as children. Like
everyone, however, she has her own unique story.
“My family stories are not pretty,” said Spriggs, 45, who grew up
in northeast Washington D.C., in a neighborhood with open-air drug
markets, crime and gang violence. “My mother had a very bad temper.
If she had a bad day, or someone teed her off, or one of her
boyfriends did something to her, I was abused pretty bad.”
Her father was around only intermittently. She later learned the
reason for his disappearances: He was often in prison.
Looking for love and craving protection from her mother, she turned to
her godbrother, a caring guardian whom she later married.
Three months into their marriage, beatings began. The first was in the
middle of the night. She woke suddenly. Her ex-husband was still
asleep but sat up as if he were awake and punched her in the face.
They both laughed about it in the morning, as if it had been an
The abuse continued.
Eventually Spriggs escaped the marriage. She moved to another state
and created a rewarding life. She even found love again, and
remarried. She changed careers. She also became an evangelist,
traveling for religious conferences frequently.
In 2010, Spriggs accepted an invitation to speak at a women’s
conference in Lynchburg, Virginia. The conference offered health
screenings. Some of the women invited her to take an HIV test with
them. “Sure, why not?” she thought, wanting to set an example for
the young women attending.
The last thing she expected was to test positive.
Her initial reaction was that she was going to die. She researched to
learn more about HIV and began to realize that many people in her life
probably died of it even though it was being labeled as something else
in the community. She was terrified, especially because she feared
returning to the pain and trauma from her past.
“I was so afraid of going to a dark place, from my childhood. I know
my triggers,” Spriggs said.
She took action, signing herself up for both inpatient and outpatient
mental health care, which helped her with her healing process. She
attended HIV support groups, where she was the only woman among gay
Spriggs counts herself fortunate. She knows that many others
have fewer resources, more responsibilities, and a lack of accessible
and culturally appropriate care.
an Associate Professor of Anthropology at the University of Maryland._
_The Conversation US arose out of deep-seated concerns for the fading
quality of our public discourse – and recognition of the vital role
that academic experts can play in the public arena._
_Independent and not-for-profit, it is part of a global network of
newsrooms first launched in Australia in 2011. The Conversation began
its US operations in 2014, and now also publishes in Canada, the UK,
France, Indonesia, Africa, Spain as well as Australia._
_The Conversation’s mission is particularly resonant in the U.S.,
where people universally sense that the country’s social fabric is
strained and the common ground people share is shrinking._
_Information always has been essential to democracy – a societal
good, like clean water. But many now find it difficult to put their
trust in the media. And with little consensus about what to believe,
it only becomes harder to reach agreement with fellow citizens
regarding what’s truthful._
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