Time to Deliver a More Effective PEPFAR

Susan A. Cohen

Susan A. Cohen is Director of Government Affairs at the Guttmacher Institute, where she is responsible for facilitating and coordinating issue analysis and strategy development within the Washington, DC office.

The theme of the Toronto International AIDS Conference in August was "time to deliver." Indeed, while the U.S. deserves credit for ramping up the amount that it has been spending on the global AIDS effort, it is time-past time-to look more closely at how the U.S. is spending its money in addition to talking about how much it is spending overall. Luckily, a rare opportunity to ask just these questions of the person in charge of U.S. AIDS efforts will come on Wednesday, September 6, at 1 p.m. Under the chairmanship of Rep. Christopher Shays (R-CT), a Government Reform Committee subcommittee will hold a hearing examining the impact of the requirement that at least 1/3 of all U.S. global HIV/AIDS funding must be reserved for "abstinence until marriage" programs.

This hearing will be significant because it will be the first opportunity since Toronto for U.S. Global AIDS Coordinator Mark Dybul to testify specifically on what kind of prevention programs the U.S. is delivering.

Susan A. Cohen is Director of Government Affairs at the Guttmacher Institute, where she is responsible for facilitating and coordinating issue analysis and strategy development within the Washington, DC office.

The theme of the Toronto International AIDS Conference in August was "time to deliver." Indeed, while the U.S. deserves credit for ramping up the amount that it has been spending on the global AIDS effort, it is time-past time-to look more closely at how the U.S. is spending its money in addition to talking about how much it is spending overall. Luckily, a rare opportunity to ask just these questions of the person in charge of U.S. AIDS efforts will come on Wednesday, September 6, at 1 p.m. Under the chairmanship of Rep. Christopher Shays (R-CT), a Government Reform Committee subcommittee will hold a hearing examining the impact of the requirement that at least 1/3 of all U.S. global HIV/AIDS funding must be reserved for "abstinence until marriage" programs.

This hearing will be significant because it will be the first opportunity since Toronto for U.S. Global AIDS Coordinator Mark Dybul to testify specifically on what kind of prevention programs the U.S. is delivering. It will also be the first and no doubt the only time there will be a congressional hearing on the role of the abstinence program within the President's Emergency Plan for AIDS Relief (PEPFAR). Certainly it will be the only such hearing in this Republican-controlled Congress that will be organized and chaired by someone who has called for the repeal of the earmark. Shays and other subcommittee members will question Dybul about how this requirement is impeding the availability of resources for other key interventions such as the prevention of mother-to-child transmission. As those following the issue closely are well aware, the Government Accountability Office reported to Congress in April that the abstinence earmark has undermined the ability of the majority of PEPFAR country teams to respond to local epidemiology when it comes to funding decisions on the ground.

The motivation for establishing the 1/3 earmark is purely ideological. When Congress added this mandate to PEPFAR in 2003, the only rationale I could discern from its proponents for siphoning off such a huge chunk of prevention funds for abstinence promotion seemed to be that "A" comprises 1/3 of the letters ABC-shorthand for the comprehensive approach to prevention involving abstaining, being faithful and using condoms correctly and consistently.

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PEPFAR however, as its name denotes, is an emergency program. Public health professionals in the field, therefore, need to have the flexibility to respond to the ever-changing demands of the HIV/AIDS epidemic. The "abstinence until marriage" earmark runs counter to this imperative. Of course, programs that encourage young people to delay becoming sexually active are an important component of any prevention effort. So are efforts that help people change their behavior to have fewer concurrent sexual partners and to increase their correct and consistent use of condoms if they are sexually active. But segmenting out prevention interventions according to an arbitrary formula and assigning these interventions, as the U.S. strategy does, to particular groups of people (abstinence for youth, fidelity for married people, condoms for "high risk" groups, which translates to sex workers, truck drivers, men who have sex with men, etc.) is cumbersome and does not derive from the public health evidence or common sense. Youth who are already sexually active, for example, do not fit neatly in the U.S. construct, even though they comprise large numbers of people who could be considered high risk in high HIV prevalence countries.

It is time to repeal or at least mitigate the harm of the abstinence until marriage earmark in PEPFAR. The "Protection Against Transmission of HIV For Women and Youth Act", introduced by Reps. Barbara Lee (D-CA) and Chris Shays, would repeal the earmark and the "HIV Prevention for Youth Act", introduced by Sens. Dianne Feinstein (D-CA) and Olympia Snowe (R-ME), would go a long way towards mitigating its harm. I look forward to the Shays hearing, which holds out the promise of being the first fair and open discussion since PEPFAR was created for looking beyond the politics and at the evidence-or lack thereof- for why the U.S. has made promoting "abstinence until marriage" its single most important U.S. HIV/AIDS prevention intervention.

Commentary Human Rights

When It Comes to Zika and Abortion, Disabled People Are Too Often Used as a Rhetorical Device

s.e. smith

Anti-choicers shame parents facing a prenatal diagnosis and considering abortion, even though they don't back up their advocacy up with support. The pro-choice movement, on the other hand, often finds itself caught between defending abortion as an absolute personal right and suggesting that some lived potentials are worth more than others.

There’s only one reason anyone should ever get an abortion: Because that person is pregnant and does not want to be. As soon as anyone—whether they are pro- or anti-choice—starts bringing up qualifiers, exceptions, and scary monsters under the bed, things get problematic. They establish the seeds of a good abortion/bad abortion dichotomy, in which some abortions are deemed “worthier” than others.

And with the Zika virus reaching the United States and the stakes getting more tangible for many Americans, that arbitrary designation is on a lot of minds—especially where the possibility of developmentally impaired fetuses is concerned. As a result, people with disabilities are more often being used as a rhetorical device for or against abortion rights rather than viewed as actualized human beings.

Here’s what we know about Zika and pregnancy: The virus has been linked to microcephaly, hearing loss, impaired growth, vision problems, and some anomalies of brain development when a fetus is exposed during pregnancy, according to the Centers for Disease Control and Prevention. Sometimes these anomalies are fatal, and patients miscarry their pregnancies. Sometimes they are not. Being infected with Zika is not a guarantee that a fetus will develop developmental impairments.

We need to know much, much more about Zika and pregnancy. At this stage, commonsense precautions when necessary like sleeping under a mosquito net, using insect repellant, and having protected sex to prevent Zika infection in pregnancy are reasonable, given the established link between Zika and developmental anomalies. But the panicked tenor of the conversation about Zika and pregnancy has become troubling.

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In Latin America, where Zika has rampantly spread in the last few years, extremely tough abortion restrictions often deprive patients of reproductive autonomy, to the point where many face the possibility of criminal charges for seeking abortion. Currently, requests for abortions are spiking. Some patients have turned to services like Women on Web, which provides assistance with accessing medical abortion services in nations where they are difficult or impossible to find.

For pro-choice advocates in the United States, the situation in Latin America is further evidence of the need to protect abortion access in our own country. Many have specifically using Zika to advocate against 20-week limits on abortion—which are already unconstitutional, and should be condemned as such. Less than 2 percent of abortions take place after 20 weeks, according to the Guttmacher Institute. The pro-choice community is often quick to defend these abortions, arguing that the vast majority take place in cases where the life of the patient is threatened, the fetus has anomalies incompatible with life, or the fetus has severe developmental impairments. Microcephaly, though rare, is an example of an impairment that isn’t diagnosable until late in the second trimester or early in the third, so when patients opt for termination, they run smack up against 20-week bans.

Thanks to the high profile of Zika in the news, fetal anomalies are becoming a talking point on both sides of the abortion divide: Hence the dire headlines sensationalizing the idea that politicians want to force patients to give birth to disabled children. The implication of leaning on these emotional angles, rather than ones based on the law or on human rights, is that Zika causes disabilities, and no one would want to have a disabled child. Some of this rhetoric is likely entirely subconscious, but it reflects internalized attitudes about disabled people, and it’s a dogwhistle to many in the disability community.

Anti-choicers, meanwhile, are leveraging that argument in the other direction, suggesting that patients with Zika will want to kill their precious babies because they aren’t perfect, and that therefore it’s necessary to clamp down on abortion restrictions to protect the “unborn.” Last weekend, for instance, failed presidential candidate Sen. Marco Rubio (R-FL) announced that he doesn’t support access to abortion for pregnant patients with the Zika virus who might, as a consequence, run the risk of having babies with microcephaly. Hardline anti-choicers, unsurprisingly, applauded him for taking a stand to protect life.

Both sides are using the wrong leverage in their arguments. An uptick in unmet abortion need is disturbing, yes—because it means that patients are not getting necessary health care. While it may be Zika exposing the issue of late, it’s a symptom, not the problem. Patients should be able to choose to get an abortion for whatever reason and at whatever time, and that right shouldn’t be defended with disingenuous arguments that use disability for cover. The issue with not being able to access abortions after 20 weeks, for example, isn’t that patients cannot access therapeutic abortions for fetuses with anomalies, but that patients cannot access abortions after 20 weeks.

The insistence from pro-choice advocates on justifying abortions after 20 weeks around specific, seemingly involuntary instances, suggests that so-called “late term abortions” need to be circumstantially defended, which retrenches abortion stigma. Few advocates seem to be willing to venture into the troubled waters of fighting for the right to abortions for any reason after 20 weeks. In part, that reflects an incremental approach to securing rights, but it may also betray some squeamishness. Patients don’t need to excuse their abortions, and the continual haste to do so by many pro-choice advocates makes it seem like a 20-week or later abortion is something wrong, something that might make patients feel ashamed depending on their reasons. There’s nothing shameful about needing abortion care after 20 weeks.

And, as it follows, nor is there ever a “bad” reason for termination. Conservatives are fond of using gruesome language targeted at patients who choose to abort for apparent fetal disability diagnoses in an attempt to shame them into believing that they are bad people for choosing to terminate their pregnancies. They use the specter of murdering disabled babies to advance not just social attitudes, but actual policy. Republican Gov. Mike Pence, for example, signed an Indiana law banning abortion on the basis of disability into law, though it was just blocked by a judge. Ohio considered a similar bill, while North Dakota tried to ban disability-related abortions only to be stymied in court. Other states require mandatory counseling when patients are diagnosed with fetal anomalies, with information about “perinatal hospice,” implying that patients have a moral responsibility to carry a pregnancy to term even if the fetus has impairments so significant that survival is questionable and that measures must be taken to “protect” fetuses against “hasty” abortions.

Conservative rhetoric tends to exceptionalize disability, with terms like “special needs child” and implications that disabled people are angelic, inspirational, and sometimes educational by nature of being disabled. A child with Down syndrome isn’t just a disabled child under this framework, for example, but a valuable lesson to the people around her. Terminating a pregnancy for disability is sometimes treated as even worse than terminating an apparently healthy pregnancy by those attempting to demonize abortion. This approach to abortion for disability uses disabled people as pawns to advance abortion restrictions, playing upon base emotions in the ultimate quest to make it functionally impossible to access abortion services. And conservatives can tar opponents of such laws with claims that they hate disabled people—even though many disabled people themselves oppose these patronizing policies, created to address a false epidemic of abortions for disability.

When those on either side of the abortion debate suggest that the default response to a given diagnosis is abortion, people living with that diagnosis hear that their lives are not valued. This argument implies that life with a disability is not worth living, and that it is a natural response for many to wish to terminate in cases of fetal anomalies. This rhetoric often collapses radically different diagnoses under the same roof; some impairments are lethal, others can pose significant challenges, and in other cases, people can enjoy excellent quality of life if they are provided with access to the services they need.

Many parents facing a prenatal diagnosis have never interacted with disabled people, don’t know very much about the disability in question, and are feeling overwhelmed. Anti-choicers want to force them to listen to lectures at the least and claim this is for everyone’s good, which is a gross violation of personal privacy, especially since they don’t back their advocacy up with support for disability programs that would make a comfortable, happy life with a complex impairment possible. The pro-choice movement, on the other hand, often finds itself caught between the imperative to defend abortion as an absolute personal right and suggesting that some lived potentials are worth more than others. It’s a disturbing line of argument to take, alienating people who might otherwise be very supportive of abortion rights.

It’s clearly tempting to use Zika as a political football in the abortion debate, and for conservatives, doing so is taking advantage of a well-established playbook. Pro-choicers, however, would do better to walk off the field, because defending abortion access on the sole grounds that a fetus might have a disability rings very familiar and uncomfortable alarm bells for many in the disability community.

Culture & Conversation Media

Filmmaker Tracy Droz Tragos Centers Abortion Stories in New Documentary

Renee Bracey Sherman

The film arrives at a time when personal stories are center stage in the national conversation about abortion, including in the most recent Supreme Court decision, and rightly so. The people who actually have and provide abortions should be driving the narrative, not misinformation and political rhetoric.

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

A new film by producer and director Tracy Droz Tragos, Abortion: Stories Women Tell, profiles several Missouri residents who are forced to drive across the Mississippi River into Illinois for abortion care.

The 93-minute film features interviews with over 20 women who have had or are having abortions, most of whom are Missouri residents traveling to the Hope Clinic in Granite City, Illinois, which is located about 15 minutes from downtown St. Louis.

Like Mississippi, North Dakota, South Dakota, and Wyoming, Missouri has only one abortion clinic in the entire state.

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The women share their experiences, painting a more nuanced picture that shows why one in three women of reproductive age often seek abortion care in the United States.

The film arrives at a time when personal stories are center stage in the national conversation about abortion, including in the most recent U.S. Supreme Court decision, and rightly so. The people who actually have and provide abortions should be driving the narrative, not misinformation and political rhetoric. But while I commend recent efforts by filmmakers like Droz Tragos and others to center abortion stories in their projects, these creators still have far to go when it comes to presenting a truly diverse cadre of storytellers if they really want to shift the conversation around abortion and break down reproductive stigma.

In the wake of Texas’ omnibus anti-abortion law, which was at the heart of the Whole Woman’s Health v. Hellerstedt Supreme Court case, Droz Tragos, a Missouri native, said in a press statement she felt compelled to document how her home state has been eroding access to reproductive health care. In total, Droz Tragos interviewed 81 people with a spectrum of experiences to show viewers a fuller picture of the barriersincluding legislation and stigmathat affect people seeking abortion care.

Similar to HBO documentaries about abortion that have come before it—including 12th & Delaware and Abortion: Desperate ChoicesAbortion: Stories Women Tell involves short interviews with women who are having and have had abortions, conversations with the staff of the Hope Clinic about why they do the work they do, interviews with local anti-choice organizers, and footage of anti-choice protesters shouting at patients, along with beautiful shots of the Midwest landscape and the Mississippi River as patients make road trips to appointments. There are scenes of clinic escorts holding their ground as anti-choice protesters yell Bible passages and obscenities at them. One older clinic escort carries a copy of Living in the Crosshairs as a protester follows her to her car, shouting. The escort later shares her abortion story.

One of the main storytellers, Amie, is a white 30-year-old divorced mother of two living in Boonville, Missouri. She travels over 100 miles each way to the Hope Clinic, and the film chronicles her experience in getting an abortion and follow-up care. Almost two-thirds of people seeking abortions, like Amie, are already a parent. Amie says that the economic challenges of raising her other children make continuing the pregnancy nearly impossible. She describes being physically unable to carry a baby and work her 70 to 90 hours a week. Like many of the storytellers in the film, Amie talks about the internalized stigma she’s feeling, the lack of support she has from loved ones, and the fear of family members finding out. She’s resilient and determined; a powerful voice.

The film also follows Kathy, an anti-choice activist from Bloomfield, Missouri, who says she was “almost aborted,” and that she found her calling in the anti-choice movement when she noticed “Anne” in the middle of the name “Planned Parenthood.” Anne is Kathy’s middle name.

“OK Lord, are you telling me that I need to get in the middle of this?” she recalls thinking.

The filmmakers interview the staff of the Hope Clinic, including Dr. Erin King, a pregnant abortion provider who moved from Chicago to Granite City to provide care and who deals with the all-too-common protesting of her home and workplace. They speak to Barb, a talkative nurse who had an abortion 40 years earlier because her nursing school wouldn’t have let her finish her degree while she was pregnant. And Chi Chi, a security guard at the Hope Clinic who is shown talking back to the protesters judging patients as they walk into the clinic, also shares her abortion story later in the film. These stories remind us that people who have abortions are on the frontlines of this work, fighting to defend access to care.

To address the full spectrum of pregnancy experiences, the film also features the stories of a few who, for various reasons, placed their children for adoption or continued to parent. While the filmmakers interview Alexis, a pregnant Black high school student whose mother died when she was 8 years old, classmates can be heard in the distance tormenting her, asking if she’s on the MTV reality show 16 and Pregnant. She’s visibly distraught and crying, illustrating the “damned if you do, damned if you don’t” conundrum women of color experiencing unintended pregnancy often face.

Te’Aundra, another young Black woman, shares her story of becoming pregnant just as she received a college basketball scholarship. She was forced to turn down the scholarship and sought an adoption, but the adoption agency refused to help her since the child’s father wouldn’t agree to it. She says she would have had an abortion if she could start over again.

While anti-choice rhetoric has conflated adoption as the automatic abortion alternative, research has shown that most seeking adoption are personally debating between adoption and parenting. This is illustrated in Janet’s story, a woman with a drug addiction who was raising one child with her partner, but wasn’t able to raise a second, so she sought an adoption. These stories are examples of the many societal systems failing those who choose adoption or students raising families, in addition to those fighting barriers to abortion access.

At times, the film feels repetitive and disjointed, but the stories are powerful. The range of experiences and reasons for having an abortion (or seeking adoption) bring to life the data points too often ignored by politicians and the media: everything from economic instability and fetal health, to domestic violence and desire to finish an education. The majority of abortion stories featured were shared by those who already had children. Their stories had a recurring theme of loneliness and lack of support from their loved ones and friends at a time when they needed it. Research has shown that 66 percent of people who have abortions tend to only tell 1.24 people about their experience, leaving them keeping a secret for fear of judgment and shame.

While many cite financial issues when paying for abortions or as the reason for not continuing the pregnancy, the film doesn’t go in depth about how the patients come to pay for their abortions—which is something my employer, the National Network for Abortion Funds (NNAF), directly addresses—or the systemic issues that created their financial situations.

However, it brings to light the hypocrisy of our nation, where the invisible hand of our society’s lack of respect for pregnant people and working parents can force people to make pregnancy decisions based on economic situations rather than a desire to be pregnant or parent.

“I’m not just doing this for me” is a common phrase when citing having an abortion for existing or future children.

Overall, the film is moving simply because abortion stories are moving, especially for audiences who don’t have the opportunity to have someone share their abortion story with them personally. I have been sharing my abortion story for five years and hearing someone share their story with me always feels like a gift. I heard parts of my own story in those shared; however, I felt underrepresented in this film that took place partly in my home state of Illinois. While people of color are present in the film in different capacities, a racial analysis around the issues covered in the film is non-existent.

Race is a huge factor when it comes to access to contraception and reproductive health care; over 60 percent of people who have abortions are people of color. Yet, it took 40 minutes for a person of color to share an abortion story. It seemed that five people of color’s abortion stories were shown out of the over 20 stories, but without actual demographic data, I cannot confirm how all the film’s storytellers identify racially. (HBO was not able to provide the demographic data of the storytellers featured in the film by press time.)

It’s true that racism mixed with sexism and abortion stigma make it more difficult for people of color to speak openly about their abortion stories, but continued lack of visual representation perpetuates that cycle. At a time when abortion storytellers themselves, like those of NNAF’s We Testify program, are trying to make more visible a multitude of identities based on race, sexuality, immigration status, ability, and economic status, it’s difficult to give a ringing endorsement of a film that minimizes our stories and relegates us to the second half of a film, or in the cases of some of these identities, nowhere at all. When will we become the central characters that reality and data show that we are?

In July, at the progressive conference Netroots Nation, the film was screened followed by an all-white panel discussion. I remember feeling frustrated at the time, both because of the lack of people of color on the panel and because I had planned on seeing the film before learning about a march led by activists from Hands Up United and the Organization for Black Struggle. There was a moment in which I felt like I had to choose between my Blackness and my abortion experience. I chose my Black womanhood and marched with local activists, who under the Black Lives Matter banner have centered intersectionality. My hope is that soon I won’t have to make these decisions in the fight for abortion rights; a fight where people of color are the backbone whether we’re featured prominently in films or not.

The film highlights the violent rhetoric anti-choice protesters use to demean those seeking abortions, but doesn’t dissect the deeply racist and abhorrent comments, often hurled at patients of color by older white protesters. These racist and sexist comments are what fuel much of the stigma that allows discriminatory laws, such as those banning so-called race- and sex-selective abortions, to flourish.

As I finished the documentary, I remembered a quote Chelsea, a white Christian woman who chose an abortion when her baby’s skull stopped developing above the eyes, said: “Knowing you’re not alone is the most important thing.”

In her case, her pastor supported her and her husband’s decision and prayed over them at the church. She seemed at peace with her decision to seek abortion because she had the support system she desired. Perhaps upon seeing the film, some will realize that all pregnancy decisions can be quite isolating and lonely, and we should show each other a bit more compassion when making them.

My hope is that the film reaches others who’ve had abortions and reminds them that they aren’t alone, whether they see themselves truly represented or not. That we who choose abortion are normal, loved, and supported. And that’s the main point of the film, isn’t it?

Abortion: Stories Women Tell is available in theaters in select cities and will be available on HBO in 2017.

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