The centrality of human rights in the “public health” response to an epidemic that has largely marginalized the individual, especially the already marginalized individual was seen as key to addressing the HIV epidemic at the IAC.
Rewire is publishing a series of articles and opinion pieces on global AIDS and HIV in conjunction with the International AIDS Conference in Vienna, which ended this weekend. We welcome vigorous and informed policy debates on these and other issues.
At the International AIDS Conference in Vienna one day last week I stood beneath a pair of underwear that belonged to a display of bras and “knickers” demarcating the border of the Women’s Networking Zone in the Global Village. Women had arrived at the AIDS Conference apparently wearing black, red, stripes, and polka dots.
And people noticed. In his remarks at the Opening Plenary of the conference, Michel Sidibé, Director of the Joint Programme on HIV/AIDS, spoke explicitly about the need to address women’s issues in our response to the epidemic, with particular reference to gender based violence. Paula Akugizibwe of the AIDS and Rights Alliance of Southern Africa reminded us that positive women avoid life-saving prevention of mother to child transmission (PMTCT) services because of egregious human rights violations in the context of delivering PMTCT care, including forced and coerced sterilization of HIV positive women. Julio Montaner acknowledged amongst the shouting of sex worker rights activists that sex work should be decriminalized.
Central to all of this is the idea that trust is important to making the health system function effectively. We cannot simply assume that health care providers can stigmatize, discriminate, and trample on the specific health needs of people who seek HIV related services – including women who seek sexual and reproductive health services in the context of HIV – and then expect people to return to a system where they were mistreated. To most this would be common sense, but the mainstream public health response has often bolstered the notion that we should be more concerned with outcomes than we are with people – a false and troubling dichotomy.
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Mandatory testing represents one of the greatest “victories” of this false dichotomy. Over the last 10 years we have seen an erosion of the right to consent to be tested for HIV, and this has had a grave impact for women who are often tested, against their will, while giving birth. For some this moment represents an “opportunity” to intervene and potentially save a life (I use the singular here intentionally as with this type of health response we often are not concerned about the well being of the mother, only that of the child) despite the fact that positive women have long decried this basic violation of bodily integrity and the fear and distrust that it has created amongst positive women. For women’s rights activists, mandatory testing becomes a gateway for other violations stemming from a woman’s positive status, from mistreatment to sterilization. Once respect for individuals has been systematically eroded in the public health arena, it is difficult to get it back. Even harder to win back is the trust of individuals, a truth learned with the Tuskeegee Syphilis Experiment when the U.S. government used Black men and their families as research subjects without their consent, a lesson that is being re-learned today with positive women.
The centrality of human rights in the “public health” response to an epidemic that has largely marginalized the individual, especially the already marginalized individual be that a woman, a sex worker, a man who has sex with other men (MSM), a transgender individual, or a drug user (or some combination of these categories) was seen as key to addressing the HIV epidemic in the Opening Plenary. Perhaps we are moving towards a culture of respect and of trust in health care settings and in turn becoming more effective in our response to the HIV epidemic. Amongst the celebration and cheers it was nice to feel hopeful, even if just for a night.
Donald Trump's running mate has said that "life is winning in Indiana"—and the biggest winner is probably a chain of crisis pregnancy centers that landed a $3.5 million contract in funds originally intended for poor Hoosiers.
Much has been made of Republican Gov. Mike Pence’s record on LGBTQ issues. In 2000, when he was running for U.S. representative, Pence wrote that “Congress should oppose any effort to recognize homosexual’s [sic] as a ‘discreet and insular minority’ [sic] entitled to the protection of anti-discrimination laws similar to those extended to women and ethnic minorities.” He also said that funds meant to help people living with HIV or AIDS should no longer be given to organizations that provide HIV prevention services because they “celebrate and encourage” homosexual activity. Instead, he proposed redirecting those funds to anti-LGBTQ “conversion therapy” programs, which have been widely discredited by the medical community as being ineffective and dangerous.
Under Pence, ideology has replaced evidence in many areas of public life. In fact, Republican presidential nominee Donald Trump has just hired a running mate who, in the past year, has reallocated millions of dollars in public funds intended to provide food and health care for needy families to anti-choice crisis pregnancy centers.
Gov. Pence, who declined multiple requests for an interview with Rewire, has been outspoken about his anti-choice agenda. Currently, Indiana law requires people seeking abortions to receive in-person “counseling” and written information from a physician or other health-care provider 18 hours before the abortion begins. And thanks, in part, to other restrictive laws making it more difficult for clinics to operate, there are currently six abortion providers in Indiana, and none in the northern part of the state. Only four of Indiana’s 92 counties have an abortion provider. All this means that many people in need of abortion care are forced to take significant time off work, arrange child care, and possibly pay for a place to stay overnight in order to obtain it.
This environment is why a contract quietly signed by Pence last fall with the crisis pregnancy center umbrella organization Real Alternatives is so potentially dangerous for Indiana residents seeking abortion: State-subsidized crisis pregnancy centers not only don’t provide abortion but seek to persuade people out of seeking abortion, thus limiting their options.
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“Indiana is committed to the health, safety, and wellbeing [sic] of Hoosier families, women, and children,” reads the first line of the contract between the Indiana State Department of Health and Real Alternatives. The contract, which began on October 1, 2015, allocates $3.5 million over the course of a year for Real Alternatives to use to fund crisis pregnancy centers throughout the state.
Where Funding Comes From
The money for the Real Alternatives contract comes from Indiana’s Temporary Assistance for Needy Families (TANF) block grant, a federally funded, state-run program meant to support the most vulnerable households with children. The program was created by the 1996 Personal Responsibility and Work Opportunity Reconciliation Act signed by former President Bill Clinton. It changed welfare from a federal program that gave money directly to needy families to one that gave money, and a lot of flexibility with how to use it, to the states.
This TANF block grant is supposed to provide low-income families a monthly cash stipend that can be used for rent, child care, and food. But states have wide discretion over these funds: In general, they must use the money to serve families with children, but they can also fund programs meant, for example, to promote marriage. They can also make changes to the requirements for fund eligibility.
As of 2012, to be eligible for cash assistance in Indiana, a household’s maximum monthly earnings could not exceed $377, the fourth-lowest level of qualification of all 50 states, according to a report by the Congressional Research Service. Indiana’s program also has some of the lowest maximum payouts to recipients in the country.
Part of this is due to a 2011 work requirement that stripped eligibility from many families. Under the new work requirement, a parent or caretaker receiving assistance needs to be “engaged in work once the State determines the parent or caretaker is ready to engage in work,” or after 24 months of receiving benefits. The maximum time allowed federally for a family to receive assistance is 60 months.
“There was a TANF policy change effective November 2011 that required an up-front job search to be completed at the point of application before we would proceed in authorizing TANF benefits,” Jim Gavin, a spokesman for the state’s Family and Social Services Administration (FSSA), told Rewire. “Most [applicants] did not complete the required job search and thus applications were denied.”
Unspent money from the block grant can be carried over to following years. Indiana receives an annual block grant of $206,799,109, but the state hasn’t been using all of it thanks to those low payouts and strict eligibility requirements. The budget for the Real Alternatives contract comes from these carry-over funds.
According to the U.S. Department of Health and Human Services, TANF is explicitly meant to clothe and feed children, or to create programs that help prevent “non-marital childbearing,” and Indiana’s contract with Real Alternatives does neither. The contract stipulates that Real Alternatives and its subcontractors must “actively promote childbirth instead of abortion.” The funds, the contract says, cannot be used for organizations that will refer clients to abortion providers or promote contraceptives as a way to avoid unplanned pregnancies and sexually transmitted infections.
Parties involved in the contract defended it to Rewire by saying they provide material goods to expecting and new parents, but Rewire obtained documents that showed a much different reality.
Real Alternatives is an anti-choice organization run by Kevin Bagatta, a Pennsylvania lawyer who has no known professional experience with medical or mental health services. It helps open, finance, and refer clients to crisis pregnancy centers. The program started in Pennsylvania, where it received a $30 million, five-year grant to support a network of 40 subcontracting crisis pregnancy centers. Auditor General Eugene DePasquale called for an audit of the organization between June 2012 and June 2015 after hearing reports of mismanaged funds, and found $485,000 in inappropriate billing. According to the audit, Real Alternatives would not permit DHS to review how the organization used those funds. However, the Pittsburgh Post-Gazettereported in April that at least some of the money appears to have been designated for programs outside the state.
Real Alternatives also received an $800,000 contract in Michigan, which inspired Gov. Pence to fund a $1 million yearlong pilot program in northern Indiana in the fall of 2014.
“The widespread success [of the pilot program] and large demand for these services led to the statewide expansion of the program,” reads the current $3.5 million contract. It is unclear what measures the state used to define “success.”
“Every Other Baby … Starts With Women’s Care Center”
Real Alternatives has 18 subcontracting centers in Indiana; 15 of them are owned by Women’s Care Center, a chain of crisis pregnancy centers. According to its website, Women’s Care Center serves 25,000 women annually in 23 centers throughout Florida, Illinois, Indiana, Michigan, Minnesota, Ohio, and Wisconsin.
Women’s Care Centers in Indiana received 18 percent of their operating budget from state’s Real Alternatives program during the pilot year, October 1, 2014 through September 30, 2015, which were mostly reimbursements for counseling and classes throughout pregnancy, rather than goods and services for new parents.
In fact, instead of the dispensation of diapers and food, “the primary purpose of the [Real Alternatives] program is to provide core services consisting of information, sharing education, and counseling that promotes childbirth and assists pregnant women in their decision regarding adoption or parenting,” the most recent contract reads.
The program’s reimbursement system prioritizes these anti-choice classes and counseling sessions: The more they bill for, the more likely they are to get more funding and thus open more clinics.
“This performance driven [sic] reimbursement system rewards vendor service providers who take their program reimbursement and reinvest in their services by opening more centers and hiring more counselors to serve more women in need,” reads the contract.
Classes, which are billed as chastity classes, parenting classes, pregnancy classes, and childbirth classes, are reimbursed at $21.80 per client. Meanwhile, as per the most recent contract, counseling sessions, which are separate from the classes, are reimbursed by the state at minimum rates of $1.09 per minute.
Jenny Hunsberger, vice president of Women’s Care Center, told Rewire that half of all pregnant women in Elkhart, LaPorte, Marshall, and St. Joseph Counties, and one in four pregnant women in Allen County, are clients of their centers. To receive any material goods, such as diapers, food, and clothing, she said, all clients must receive this counseling, at no cost to them. Such counseling is billed by the minute for reimbursement.
“When every other baby born [in those counties] starts with Women’s Care Center, that’s a lot of minutes,” Hunsberger told Rewire.
Rewire was unable to verify exactly what is said in those counseling sessions, except that they are meant to encourage clients to carry their pregnancies to term and to help them decide between adoption or child rearing, according to Hunsberger. As mandated by the contract, both counseling and classes must “provide abstinence education as the best and only method of avoiding unplanned pregnancies and sexually transmitted infections.”
In the first quarter of the new contract alone, Women’s Care Center billed Real Alternatives and, in turn, the state, $239,290.97; about $150,000 of that was for counseling, according to documents obtained by Rewire. In contrast, goods like food, diapers, and other essentials for new parents made up only about 18.5 percent of Women’s Care Center’s first-quarter reimbursements.
Despite the fact that the state is paying for counseling at Women’s Care Center, Rewire was unable to find any licensing for counselors affiliated with the centers. Hunsberger told Rewire that counseling assistants and counselors complete a minimum training of 200 hours overseen by a master’s level counselor, but the counselors and assistants do not all have social work or psychology degrees. Hunsberger wrote in an email to Rewire that “a typical Women’s Care Center is staffed with one or more highly skilled counselors, MSW or equivalent.”
Rewire followed up for more information regarding what “typical” or “equivalent” meant, but Hunsberger declined to answer. A search for licenses for the known counselors at Women’s Care Center’s Indiana locations turned up nothing. The Indiana State Department of Health told Rewire that it does not monitor or regulate the staff at Real Alternatives’ subcontractors, and both Women’s Care Center and Real Alternatives were uncooperative when asked for more information regarding their counseling staff and training.
Bethany Christian Services and Heartline Pregnancy Center, Real Alternatives’ other Indiana subcontractors, billed the program $380.41 and $404.39 respectively in the first quarter. They billed only for counseling sessions, and not goods or classes.
“We don’t provide medical services. We provide human services,” Bagatta told the City Paper.
There are pregnancy centers in Indiana that provide a full range of referrals for reproductive health care, including for STI testing and abortion. However, they are not eligible for reimbursement under the Real Alternatives contract because they do not maintain an anti-choice mission.
Parker Dockray is the executive director of Backline, an all-options pregnancy resource center. She told Rewire that Backline serves hundreds of Indiana residents each month, and is overwhelmed by demand for diapers and other goods, but it is ineligible for the funding because it will refer women to abortion providers if they choose not to carry a pregnancy to term.
“At a time when so many Hoosier families are struggling to make ends meet, it is irresponsible for the state to divert funds intended to support low-income women and children and give it to organizations that provide biased pregnancy counseling,” Dockray told Rewire. “We wish that Indiana would use this funding to truly support families by providing job training, child care, and other safety net services, rather than using it to promote an anti-abortion agenda.”
“Life Is Winning in Indiana”
Time and again, Bagatta and Hunsberger stressed to Rewire that their organizations do not employ deceitful tactics to get women in the door and to convince them not to have abortions. However, multiple studies have proven that crisis pregnancy centers often lie to women from the moment they search online for an abortion provider through the end of their appointments inside the center.
These studies have also shown that publicly funded crisis pregnancy centers dispense medically inaccurate information to clients. In addition to spreading lies like abortion causing infertility or breast cancer, they are known to give false hopes of miscarriages to people who are pregnant and don’t want to be. A 2015 report by NARAL Pro-Choice America found this practice to be ubiquitous in centers throughout the United States, and Rewire found that Women’s Care Center is no exception. The organization’s website says that as many as 40 percent of pregnancies end in natural miscarriage. While early pregnancy loss is common, it occurs in about 10 percent of known pregnancies, according to the American Congress of Obstetricians and Gynecologists.
Crisis pregnancy centers also tend to crop up next to abortion clinics with flashy, deceitful signs that lead many to mistakenly walk into the wrong building. Once inside, clients are encouraged not to have an abortion.
A Google search for “abortion” and “Indianapolis” turns up an ad for the Women’s Care Center as the first result. It reads: “Abortion – Indianapolis – Free Ultrasound before Abortion. Located on 86th and Georgetown. We’re Here to Help – Call Us Today: Abortion, Ultrasound, Locations, Pregnancy.”
Hunsberger denies any deceit on the part of Women’s Care Center.
“Clients who walk in the wrong door are informed that we are not the abortion clinic and that we do not provide abortions,” Hunsberger told Rewire. “Often a woman will choose to stay or return because we provide services that she feels will help her make the best decision for her, including free medical-grade pregnancy tests and ultrasounds which help determine viability and gestational age.”
Planned Parenthood of Indiana and Kentucky told Rewire that since Women’s Care Center opened on 86th and Georgetown in Indianapolis, many patients looking for its Georgetown Health Center have walked through the “wrong door.”
“We have had patients miss appointments because they went into their building and were kept there so long they missed their scheduled time,” Judi Morrison, vice president of marketing and education, told Rewire.
Sarah Bardol, director of Women’s Care Center’s Indianapolis clinic, told the Criterion Online Edition, a publication of the Archdiocese of Indianapolis, that the first day the center was open, a woman and her boyfriend did walk into the “wrong door” hoping to have an abortion.
“The staff of the new Women’s Care Center in Indianapolis, located just yards from the largest abortion provider in the state, hopes for many such ‘wrong-door’ incidents as they seek to help women choose life for their unborn babies,” reported the Criterion Online Edition.
If they submit to counseling, Hoosiers who walk into the “wrong door” and “choose life” can receive up to about $40 in goods over the course their pregnancy and the first year of that child’s life. Perhaps several years ago they may have been eligible for Temporary Assistance for Needy Families, but now with the work requirement, they may not qualify.
In a February 2016 interview with National Right to Life, one of the nation’s most prominent anti-choice groups, Gov. Pence said, “Life is winning in Indiana.” Though Pence was referring to the Real Alternatives contract, and the wave of anti-choice legislation sweeping through the state, it’s not clear what “life is winning” actually means. The state’s opioid epidemic claimed 1,172 lives in 2014, a statistically significant increase from the previous year, according to the Centers for Disease Control and Prevention. HIV infections have spread dramatically throughout the state, in part because of Pence’s unwillingness to support medically sound prevention practices. Indiana’s infant mortality rate is above the national average, and infant mortality among Black babies is even higher. And Pence has reduced access to prevention services such as those offered by Planned Parenthood through budget cuts and unnecessary regulations—while increasing spending on anti-choice crisis pregnancy centers.
Gov. Pence’s track record shows that these policies are no mistake. The medical and financial needs of his most vulnerable constituents have taken a backseat to religious ideology throughout his time in office. He has literally reallocated money for poor Hoosiers to fund anti-choice organizations. In his tenure as both a congressman and a governor, he’s proven that whether on a national or state level, he’s willing to put “pro-life” over quality-of-life for his constituents.
I met Juanita Williams in the mid-1980s. She was the first client at SisterLove, the then-new Atlanta nonprofit I founded for women living with AIDS.
June 27 is National HIV Testing Day, and many women will be tested during the observance. But when I met Williams, HIV was a growing reality in our communities, and women were not even recognized as a population at risk for HIV at that time.
This lack of understanding was reflected in women’s experiences when seeking care. Williams’ attempt to get a tubal ligation had been met with fear, ignorance, and hostility from a medical team who informed her she had AIDS. Not only did they refuse to provide her the medical procedure, the hospital staff promptly ushered her down the back staircase and out the door. Williams was left without information or counseling for what was devastating news.
A Black woman who grew up in Syracuse, New York, she had moved to her family’s home state of South Carolina. Her first major decision after her diagnosis was to leave South Carolina and move to Atlanta, where she believed she would get better treatment and support. She was right, and still, it wasn’t easy—not then and not now. Even today, Williams says, “Positive people are not taken seriously, and positive women are taken even less seriously. People think positive people are way down on the totem pole.”
As communities across the United States observe National HIV Testing Day and emphasize taking control of our health and lives, women’s voices are an essential but still neglected part of the conversation. The experiences of Black women living with HIV, within the broader context of their sexual and reproductive health, highlight the need to address systemic health disparities and the promise of a powerful movement at the intersection of sexual and reproductive justice.
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The urgency of adopting an intersectional approach to sexual and reproductive health comes to light when considering the disproportionate impact of HIV on women of color. Black women account for 69 percent of all HIV diagnoses among women in the South. Advocates also acknowledge the history of biomedical and reproductive oppression that Black women have suffered throughout American history, including forced pregnancy and childrearing during slavery to forced sterilization afterward. Keeping these matters in mind helps us understand how the HIV epidemic is a matter of sexual and reproductive justice.
Taking seriously the perspectives of women such as Williams would amplify our collective efforts to eradicate HIV’s impacts while elevating women’s health, dignity, and agency. This is especially pressing for women living with HIV who experience the greatest disparities and access barriers to the broad spectrum of reproductive health, including contraception and abortion.
The policy context has created additional barriers to advancing the reproductive health of women living with HIV. For example, the 2015 National HIV AIDS Strategy Update neglected to mention family planning or reproductive health services as arenas for providing HIV prevention care. Yet, in many instances, a reproductive health clinic is a woman’s primary or only point of access to health care in a given year. Providing HIV prevention and care in family planning clinics is a way to provide a space where women can expect to receive guidance about their risk of exposure to HIV.
As advocates for women living with HIV, we at SisterLove are committed to ensuring that human rights values are at the center of social change efforts to protect and advance the sexual and reproductive health and rights of women and their families. We work to transform the policy frame to one that asserts women’s agency to make decisions that are best for themselves and their loved ones. We draw strength from the resilience and determination of the women we serve.
Several years after becoming deeply involved with SisterLove, Williams became an advocate for her own reproductive health and began speaking out on behalf of other Black women living with HIV. She eventually became a trainer, counselor, and health outreach worker.
Later, in 2004, Williams was the only woman living with HIV invited to be a main speaker at the historic March for Women’s Lives in Washington, D.C. She is a mother, grandmother, and great-grandmother who has returned to South Carolina, where she teaches other women living with HIV about sexual and reproductive justice and human rights. Williams uses her own story and strength to help other women find theirs.
“Give [women living with HIV] a voice and a platform for that voice,” she has said. “Give a safe place to let their voices be heard and validate them …. We need positive women’s voices to continue to fight the stigma. How do we do that? We tell our stories and reflect each other. I am not the enemy, I am the answer.”
Advocates need strength as we work at many critical intersections where the lives of women and girls are shaped. We cannot address HIV and AIDS without access to contraception and abortion care; health and pay equity; recognition of domestic and gender-based violence; and the end of HIV criminalization. And as advocates for sexual and reproductive health in our communities, SisterLove is working alongside our sisters to support National HIV Testing Day and ensure all people have the information, tools, and agency to take control of their health.
Elevating the health and dignity of people living with HIV calls for special attention to the epidemic’s implications for women of color and Black women, particularly those within marginalized communities and in the Deep South. The voices and leadership of the most affected women and people living with HIV are essential to making our efforts more relevant and powerful. Together, we can advance the long-term vision for sexual and reproductive justice while working to eradicate HIV for all people.