Keeping Our Promise to the World’s Youth

Sharon Camp

Sharon Camp, Ph.D., is the President and CEO of the Guttmacher Institute.

The theme of this year's World AIDS Day on December 1 is accountability: Stop AIDS, Keep the Promise.

When it was first discovered in 1981, the virus that causes AIDS threatened to wreak havoc on the lives of millions worldwide, and today - with 40 million living with the virus and four million new infections this year - the virus has kept its dire promise.

On the other hand, the global community has fallen short of its promise to provide adequate funding for prevention, treatment and care. Our failure holds grave consequences for the world's youth. We promised to take care of our future generations, but do today's adolescents - tomorrow's adults - have the knowledge, skills and resources to have healthy relationships and protect themselves against diseases such as HIV/AIDS?

Sharon Camp, Ph.D., is the President and CEO of the Guttmacher Institute.

The theme of this year's World AIDS Day on December 1 is accountability: Stop AIDS, Keep the Promise.

When it was first discovered in 1981, the virus that causes AIDS threatened to wreak havoc on the lives of millions worldwide, and today – with 40 million living with the virus and four million new infections this year – the virus has kept its dire promise.

On the other hand, the global community has fallen short of its promise to provide adequate funding for prevention, treatment and care. Our failure holds grave consequences for the world's youth. We promised to take care of our future generations, but do today's adolescents – tomorrow's adults – have the knowledge, skills and resources to have healthy relationships and protect themselves against diseases such as HIV/AIDS?

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Not quite.

Recent studies by the Guttmacher Institute and colleagues provide a good yardstick by which to measure our progress in the fight against HIV/AIDS in Sub-Saharan Africa, where the virus has hit the hardest. The findings are clear and troubling: Adolescents in Ghana, Uganda, Burkina Faso and Malawi are not getting the information they need to protect themselves from HIV.

  • Awareness of AIDS is widespread, but knowledge of how to prevent HIV is not: Fewer than one in three adolescents in these four countries can both correctly identify ways of preventing HIV and reject major misconceptions about HIV.
  • Fewer than three in 10 adolescents use any kind of contraceptive the first time they have sex. Most say they didn't use a condom because they "felt safe" or didn't have one.
  • One of the best ways to reach young people before they become sexually active – school-based sex education – remains underutilized: Fewer than half of young women and fewer than 40% of young men ever attended sex education classes.

But the main message from our research is not pessimism, but hope. Young people are working hard to achieve their dreams. More than seven in 10 adolescents in Ghana, Uganda and Malawi expect to complete their education, and many young people aspire to good jobs that will allow them to support themselves and their families. Witness this exchange with one Ghanaian adolescent:

I: Now tell me what you will like your life to be like in the next five years.

R: I want to be at a teacher training college.

I: What could make this more or less likely to happen?

R: If I learn hard I can reach where I want to go.

I: But what do you think will not allow you to get to the training college by five years time?

R: If I become pregnant or infected with HIV/AIDS.

This World AIDS Day, young people from around the world are speaking up to draw attention to the need for well-funded, focused and sustained prevention efforts. We owe it to the next generation to support their dreams by promoting sound programs and policies and by opening our pocketbooks to invest in their futures and rid the world of this scourge.

According to a new report, AIDS is now promising to become the third leading cause of death worldwide. AIDS has a pretty good track record for keeping its promises. Will we?

Click here to learn more about HIV and young people

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.

Commentary Contraception

The Promotion of Long-Acting Contraceptives Must Confront History and Center Patient Autonomy

Jamila Taylor

While some long-acting reversible contraceptive methods were used to undermine women of color's reproductive freedom, those methods still hold the promise of reducing unintended pregnancy among those most at risk.

Since long-acting reversible contraceptives (LARCs), including intrauterine devices and hormonal contraceptive implants, are among the most effective means of pregnancy prevention, many family planning and reproductive health providers are increasingly promoting them, especially among low-income populations.

But the promotion of LARCs must come with an acknowledgment of historical discriminatory practices and public policy related to birth control. To improve contraceptive access for low-income women and girls of color—who bear the disproportionate effects of unplanned pregnancy—providers and advocates must work to ensure that the reproductive autonomy of this population is respected now, precisely because it hasn’t been in the past.

For Black women particularly, the reproductive coercion that began during slavery took a different form with the development of modern contraceptive methods. According to Dorothy Roberts, author of Killing the Black Body, “The movement to expand women’s reproductive options was marked with racism from its very inception in the early part of [the 20th] century.” Decades later, government-funded family planning programs encouraged Black women to use birth control; in some cases, Black women were coerced into being sterilized.

In the 1990s, the contraceptive implant Norplant was marketed specifically to low-income women, especially Black adults and teenage girls. After a series of public statements about the benefits of Norplant in reducing pregnancy among this population, policy proposals soon focused on ensuring usage of the contraceptive method. Federal and state governments began paying for Norplant and incentivizing its use among low-income women while budgets for social support programs were cut. Without assistance, Norplant was not an affordable option, with the capsules costing more than $300 and separate, expensive costs for implantation and removal.

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Soon, Norplant was available through the Medicaid program. Some states introduced (ultimately unsuccessful) bills that would give cash rewards to entice low-income women on public assistance into using it; a few, such as Tennessee and Washington state, required that women receiving various forms of public assistance get information about Norplant. After proposing a bill to promote the use of Norplant in his state in 1994, a Connecticut legislator made the comment, “It’s far cheaper to give you money not to have kids than to give you money to have kids.” By that year, as Roberts writes, states had spent $34 million on Norplant-related care, much of it for women on Medicaid. Policymakers thought it was completely legitimate and cost-effective to control the reproduction of low-income women.

However, promoting this method among low-income Black women and adolescents was problematic. Racist, classist ideology dictating that this particular population of women shouldn’t have children became the basis for public policy. Even though coercive practices in reproductive health were later condemned, these practices still went on to shape cultural norms around race and gender, as well as medical practice.

This history has made it difficult to move beyond negative perceptions, and even fear, of LARCs, health care, and the medical establishment among some women of color. And that’s why it’s so important to ensure informed consent when advocating for effective contraceptive methods, with choice always at the center.

But how can policies and health-care facilities promote reproductive autonomy?

Health-care providers must deal head on with the fact that many contemporary women have concerns about LARCs being recommended specifically to low-income women and women of color. And while this is part of the broader effort to make LARCs more affordable and increasingly available to communities that don’t have access to them, mechanisms should be put in place to address this underlying issue. Requiring cultural competency training that includes information on the history of coercive practices affecting women of color could help family planning providers understand this concern for their patients.

Then, providers and health systems must address other barriers that make it difficult for women to access LARCs in particular. LARCs can be expensive in the short term, and complicated billing and reimbursement practices in both public and private insurance confuse women and providers. Also, the full cost associated with LARC usage isn’t always covered by insurance.

But the process shouldn’t end at eliminating barriers. Low-income Black women and teens must receive comprehensive counseling for contraception to ensure informed choice—meaning they should be given information on the full array of methods. This will help them choose the method that best meets their needs, while also promoting reproductive autonomy—not a specific contraceptive method.

Clinical guidelines for contraception must include detailed information on informed consent, and choice and reproductive autonomy should be clearly outlined when family planning providers are trained.

It’s crucial we implement these changes now because recent investments and advocacy are expanding access to LARCs. States are thinking creatively about how to reduce unintended pregnancy and in turn reduce Medicaid costs through use of LARCs. The Colorado Family Planning Initiative has been heralded as one of the most effective in helping women access LARCs. Since 2008, more than 30,000 women in Colorado have chosen LARCs as the result of the program. Provider education, training, and contraceptive counseling have also been increased, and women can access LARCs at reduced costs.

The commitment to LARCs has apparently yielded major returns for Colorado. Between 2009 and 2013, the abortion rate among teenagers older than 15 in Colorado dropped by 42 percent. Additionally, the birth rate for young women eligible for Medicaid dropped—resulting in cost savings of up to an estimated $111 million in Medicaid-covered births. LARCs have been critical to these successes. Public-private partnerships have helped keep the program going since 2015, and states including Delaware and Iowa have followed suit in efforts to experience the same outcomes.

Recognizing that prevention is a key component to any strategy addressing a public health concern, those strategies must be rooted in ensuring access to education and comprehensive counseling so that women and teens can make the informed choices that are best for them. When women and girls are given the tools to empower themselves in decision making, the results are positive—not just for what the government spends or does not spend on social programs, but also for the greater good of all of us.

The history of coercion undermining reproductive freedom among women and girls of color in this country is an ugly one. But this certainly doesn’t have to dictate how we move forward.

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