Commentary Sexual Health

Behind the HIV ‘Miracle Cure,’ a Broken System Lurks

Jim Merrell

There's been much talk this week about the "miracle cure" of a child with HIV. But what about the unjust health-care system that failed her mother?

Cross-posted with permission from the HIV Prevention Justice Alliance (HIV PJA).

The stories we tell ourselves about the world we live in matter. While we celebrate this week’s story of an HIV “miracle cure,” let’s not forget the story of injustice that made it possible.

There’s been much talk this week about the so-called Mississippi Miracle—the apparent functional cure of a two-year-old girl who was born with HIV.

But I’d like to tell you another story. One that’s based on the few details that have emerged about the Mississippi case and the hard truths we know about the challenges facing many people living with HIV in the United States.

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It’s a story about our health-care system.

A young mother in Mississippi goes into labor early. Her arrival at the hospital marks the first time she has received medical care during her pregnancy.

She has no documented HIV status, prompting hospital staff to test her for the virus.

The test comes back positive. Her baby is born prematurely, also infected with HIV.

In a matter of hours, the life of the young mother has been turned upside-down. She is forced to confront the reality of living a lifetime with an incurable infection—one that could have been prevented. Whatever life circumstances prevented her from accessing pre-natal care likely remain unaddressed. And then, 18 months after the birth, mother and baby are disconnected from care for a period of six months. Sadly, if the story ended there, it would be unremarkable. Despite over a decade of knowledge on the prevention of mother-to-child transmission of HIV and the amazing success of public health programming that put this knowledge into practice, the Centers for Disease Control and Prevention (CDC) reports that about 370,000 children are born with HIV each year globally, about 200 of them here in the United States.

Of course, this particular story has quite a silver lining. Defying all previous scientific knowledge, and after a six-month gap in care, the toddler appears to have seen a functional cure of her HIV infection.

Media attention has understandably focused on this historic observation and its potential implications for HIV cure research and mother-to-child transmission.

But lurking behind this feel-good narrative are several heart wrenching questions:

Why, in the richest country in the world, is it possible for a pregnant woman to receive no prenatal care whatsoever?

Why is it that our medical care system did not detect the HIV status of this young woman until she was about to delivery her baby?

Why is it that even after the mother and child were diagnosed with HIV, they were “lost to care” for over six months?

Why are we not asking these questions?

The reality is that this “natural experiment” was brought about by a failure of our health-care system to protect the most vulnerable—and often most invisible—members of our communities. It should never have happened.

Our excitement over the breakthrough that stemmed from this accident of injustice should be matched by an equal sense of shame that we continue to allow our fellow human beings to slip through the cracks of a broken health-care system.

The little girl blessed with a miracle need not be left at the mercy of the same social safety net that clearly failed her mother. This is a story we can still change. I hope you will stand with the HIV Prevention Justice Alliance as we speak truth to power, putting pen to paper and bringing our bodies to the streets to write the story of a more just future for us all.

Commentary Sexuality

Black Trans Liberation Tuesday Must Become an Annual Observance

Raquel Willis

As long as trans people—many of them Black trans women—continue to be murdered, there will be a need to commemorate their lives, work to prevent more deaths, and uplift Black trans activism.

This piece is published in collaboration with Echoing Ida, a Forward Together project.

This week marks one year since Black transgender activists in the United States organized Black Trans Liberation Tuesday. Held on Tuesday, August 25, the national day of action publicized Black trans experiences and memorialized 18 trans women, predominantly trans women of color, who had been murdered by this time last year.

In conjunction with the Black Lives Matter network, the effort built upon an earlier Trans Liberation Tuesday observance created by Bay Area organizations TGI Justice Project and Taja’s Coalition to recognize the fatal stabbing of 36-year-old trans Latina woman Taja DeJesus in February 2015.

Black Trans Liberation Tuesday should become an annual observance because transphobic violence and discrimination aren’t going to dissipate with one-off occurrences. I propose that Black Trans Liberation Tuesday fall on the fourth Tuesday of August to coincide with the first observance and also the August 24 birthday of the late Black trans activist Marsha P. Johnson.

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There is a continuing need to pay specific attention to Black transgender issues, and the larger Black community must be pushed to stand in solidarity with us. Last year, Black trans activists, the Black Lives Matter network, and GetEQUAL collaborated on a blueprint of what collective support looks like, discussions that led to Black Trans Liberation Tuesday.

“Patrisse Cullors [a co-founder of Black Lives Matter] had been in talks on ways to support Black trans women who had been organizing around various murders,” said Black Lives Matter Organizing Coordinator Elle Hearns of Washington, D.C. “At that time, Black trans folks had been experiencing erasure from the movement and a lack of support from cis people that we’d been in solidarity with who hadn’t reciprocated that support.”

This erasure speaks to a long history of Black LGBTQ activism going underrecognized in both the civil rights and early LGBTQ liberation movements. Many civil rights leaders bought into the idea that influential Black gay activist Bayard Rustin was unfit to be a leader simply because he had relationships with men, though he organized the 1963 March on Washington for Jobs and Freedom. Johnson, who is often credited with kicking off the 1969 Stonewall riots with other trans and gender-nonconforming people of color, fought tirelessly for LGBTQ rights. She and other trans activists of color lived in poverty and danger (Johnson was found dead under suspicious circumstances in July 1992), while the white mainstream gay elite were able to demand acceptance from society. Just last year, Stonewall, a movie chronicling the riots, was released with a whitewashed retelling that centered a white, cisgender gay male protagonist.

The Black Lives Matter network has made an intentional effort to avoid the pitfalls of those earlier movements.

“Our movement has been intersectional in ways that help all people gain liberation whether they see it or not. It became a major element of the network vision and how it was seeing itself in the Black liberation movement,” Hearns said. “There was no way to discuss police brutality without discussing structural violence affecting Black lives, in general”—and that includes Black trans lives.

Despite a greater mainstream visibility for LGBTQ issues in general, Black LGBTQ issues have not taken the forefront in Black freedom struggles. When a Black cisgender heterosexual man is killed, his name trends on social media feeds and is in the headlines, but Black trans women don’t see the same importance placed on their lives.

According to a 2015 report by the Anti-Violence Project, a group dedicated to ending anti-LGBTQ and HIV-affected community violence, trans women of color account for 54 percent of all anti-LGBTQ homicides. Despite increased awareness, with at least 20 transgender people murdered since the beginning of this year, it seems things haven’t really changed at all since Black Trans Liberation Tuesday.

“There are many issues at hand when talking about Black trans issues, particularly in the South. There’s a lack of infrastructure and support in the nonprofit sector, but also within health care and other systems. Staffs at LGBTQ organizations are underfunded when it comes to explicitly reaching the trans community,” said Micky Bradford, the Atlanta-based regional organizer for TLC@SONG. “The space between towns can harbor isolation from each other, making it more difficult to build up community organizing, coalitions, and culture.”

The marginalization that Black trans people face comes from both the broader society and the Black community. Fighting white supremacy is a full-time job, and some activists within the Black Lives Matter movement see homophobia and transphobia as muddying the fight for Black liberation.

“I think we have a very special relationship with gender and gender violence to all Black people,” said Aaryn Lang, a New York City-based Black trans activist. “There’s a special type of trauma that Black people inflict on Black trans people because of how strict the box of gender and space of gender expression has been to move in for Black people. In the future of the movement, I see more people trusting that trans folks have a vision that’s as diverse as blackness is.”

But even within that diversity, Black trans people are often overlooked in movement spaces due to anti-Blackness in mainstream LGBTQ circles and transphobia in Black circles. Further, many Black trans people aren’t in the position to put energy into movement work because they are simply trying to survive and find basic resources. This can create a disconnect between various sections of the Black trans community.

Janetta Johnson, executive director of TGI Justice Project in San Francisco, thinks the solution is twofold: increased Black trans involvement and leadership in activism spaces, and more facilitated conversations between Black cis and trans people.

“I think a certain part of the transgender community kind of blocks all of this stuff out. We are saying we need you to come through this process and see how we can create strength in numbers. We need to bring in other trans people not involved in the movement,” she said. “We need to create a space where we can share views and strategies and experiences.”

Those conversations must be an ongoing process until the killings of Black trans women like Rae’Lynn Thomas, Dee Whigham, and Skye Mockabee stop.

“As we commemorate this year, we remember who and why we organized Black Trans Liberation Tuesday last year. It’s important we realize that Black trans lives are still being affected in ways that everyday people don’t realize,” Hearns said. “We must understand why movements exist and why people take extreme action to continuously interrupt the system that will gladly forget them.”

News Human Rights

What’s Driving Women’s Skyrocketing Incarceration Rates?

Michelle D. Anderson

Eighty-two percent of the women in jails nationwide find themselves there for nonviolent offenses, including property, drug, and public order offenses.

Local court and law enforcement systems in small counties throughout the United States are increasingly using jails to warehouse underserved Black and Latina women.

The Vera Institute of Justice, a national policy and research organization, and the John D. and Catherine T. MacArthur Foundation’s Safety and Justice Challenge initiative, released a study last week showing that the number of women in jails based in communities with 250,000 residents or fewer in 2014 had grown 31-fold since 1970, when most county jails lacked a single woman resident.

By comparison, the number of women in jails nationwide had jumped 14-fold since 1970. Historically, jails were designed to hold people not yet convicted of a crime or people serving terms of one year or less, but they are increasingly housing poor women who can’t afford bail.

Eighty-two percent of the women in jails nationwide find themselves there for nonviolent offenses, including property, drug, and public order offenses.

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Overlooked: Women and Jails in an Era of Reform,” calls attention to jail incarceration rates for women in small counties, where rates increased from 79 per 100,000 women to 140 per 100,000 women, compared to large counties, where rates dropped from 76 to 71 per 100,000 women.

The near 50-page report further highlights that families of color, who are already disproportionately affected by economic injustice, poor access to health care, and lack of access to affordable housing, were most negatively affected by the epidemic.

An overwhelming percentage of women in jail, the study showed, were more likely to be survivors of violence and trauma, and have alarming rates of mental illness and substance use problems.

“Overlooked” concluded that jails should be used a last resort to manage women deemed dangerous to others or considered a flight risk.

Elizabeth Swavola, a co-author of “Overlooked” and a senior program associate at the Vera Institute, told Rewire that smaller regions tend to lack resources to address underlying societal factors that often lead women into the jail system.

County officials often draft budgets mainly dedicated to running local jails and law enforcement and can’t or don’t allocate funds for behavioral, employment, and educational programs that could strengthen underserved women and their families.

“Smaller counties become dependent on the jail to deal with the issues,” Swavola said, adding that current trends among women deserves far more inquiry than it has received.

Fred Patrick, director of the Center on Sentencing and Corrections at the Vera Institute, said in “Overlooked” that the study underscored the need for more data that could contribute to “evidence-based analysis and policymaking.”

“Overlooked” relies on several studies and reports, including a previous Vera Institute study on jail misuse, FBI statistics, and Rewire’s investigation on incarcerated women, which examined addiction, parental rights, and reproductive issues.

“Overlooked” authors highlight the “unique” challenges and disadvantages women face in jails.

Women-specific issues include strained access to menstrual hygiene products, abortion care, and contraceptive care, postpartum separation, and shackling, which can harm the pregnant person and fetus by applying “dangerous levels of pressure, and restriction of circulation and fetal movement.”

And while women are more likely to fare better in pre-trail proceedings and receive low bail amounts, the study authors said they are more likely to leave the jail system in worse condition because they are more economically disadvantaged.

The report noted that 60 percent of women housed in jails lacked full-time employment prior to their arrest compared to 40 percent of men. Nearly half of all single Black and Latina women have zero or negative net wealth, “Overlooked” authors said.

This means that costs associated with their arrest and release—such as nonrefundable fees charged by bail bond companies and electronic monitoring fees incurred by women released on pretrial supervision—coupled with cash bail, can devastate women and their families, trapping them in jail or even leading them back to correctional institutions following their release.

For example, the authors noted that 36 percent of women detained in a pretrial unit in Massachusetts in 2012 were there because they could not afford bail amounts of less than $500.

The “Overlooked” report highlighted that women in jails are more likely to be mothers, usually leading single-parent households and ultimately facing serious threats to their parental rights.

“That stress affects the entire family and community,” Swavola said.

Citing a Corrections Today study focused on Cook County, Illinois, the authors said incarcerated women with children in foster care were less likely to be reunited with their children than non-incarcerated women with children in foster care.

The sexual abuse and mental health issues faced by women in jails often contribute to further trauma, the authors noted, because women are subjected to body searches and supervision from male prison employees.

“Their experience hurts their prospects of recovering from that,” Swavola said.

And the way survivors might respond to perceived sexual threats—by fighting or attempting to escape—can lead to punishment, especially when jail leaders cannot detect or properly respond to trauma, Swavola and her peers said.

The authors recommend jurisdictions develop gender-responsive policies and other solutions that can help keep women out of jails.

In New York City, police take people arrested for certain non-felony offenses to a precinct, where they receive a desk appearance ticket, or DAT, along with instructions “to appear in court at a later date rather than remaining in custody.”

Andrea James, founder of Families for Justice As Healing and a leader within the National Council For Incarcerated and Formerly Incarcerated Women and Girls, said in an interview with Rewire that solutions must go beyond allowing women to escape police custody and return home to communities that are often fragmented, unhealthy, and dangerous.

Underserved women, James said, need access to healing, transformative environments. She cited as an example the Brookview House, which helps women overcome addiction, untreated trauma, and homelessness.

James, who has advocated against the criminalization of drug use and prostitution, as well as the injustices faced by those in poverty, said the problem of jail misuse could benefit from the insight of real experts on the issue: women and girls who have been incarcerated.

These women and youth, she said, could help researchers better understand the “experiences that brought them to the bunk.”

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