Opt-Out HIV Testing for Pregnant Women

Emily Douglas

It seems like sound public health -- but it's much more complicated.

Throughout the summer, the New Jersey state legislature has been considering a bill that could, according to the New Jersey State Senate Democrats, put the state "at the forefront of the national fight against HIV transmission to newborns" – that is, enact a law that would require HIV testing of pregnant women and require HIV testing of newborns for mothers whose HIV status is unknown. Local newspapers in North Carolina, meanwhile, editorialized in favor of their state's Commission for Public Health's August vote in favor of mandating HIV testing for pregnant women who are ready to deliver and for whom there is no medical record of a previous HIV test.

Viewed one way, mandatory HIV testing for pregnant women is the "no-brainer" that New Jersey Senate President Richard J. Codey, co-sponsor of the bill, says it is – given that when women take anti-retrovirals during pregnancy, deliver by Caesarean section, and avoid breast-feeding, perinatal transmission can be cut to two percent, one can't imagine a better way to prevent HIV transmission to newborns than ensuring that mothers know their status – right? Except that, as Rose Saxe, staff attorney at the AIDS Project at the American Civil Liberties Union, has pointed out, mandating testing is not mandating treatment. Women who are forced to be tested will not necessarily seek out treatment, and cannot be forced to be treated for the disease or to take special precautions against transmitting the disease during pregnancy to the fetus. In fact, once you recognize the distinction between testing and treatment, and that testing amounts to a form of treatment, if an incomplete one, the counter-argument – that forced testing, like forced treatment, would amount to medical intervention without consent – makes the apparent "no-brainer" require some thought after all.

Proponents of New Jersey's testing law are quick to point out that testing would be "required" but, apparently, not mandatory – "While the testing is not mandatory, it will be readily available and physicians will be prepared to educate mothers on the benefits of testing," says Senator Loretta Weinberg, co-sponsor of the bill. The bill has, in various forms, passed both the State Senate and the Assembly and is working its way towards the Governor's office. While in the legislature, the bill was amended to allow women to opt-out verbally, and not require a written refusal. "Essentially we're moving from opt-in to opt-out," says State Senate spokesperson Jennifer Sciortino. "This is going to end up capturing more people."

But according to studies done in states that do have some form of opt-out testing for pregnant women, testing does not have to be mandatory to be involuntary. When Michigan implemented routine, opt-out HIV testing for pregnant women, a study examining the effects of the new law found that "fewer than half of the women felt very comfortable refusing testing, and one in five did not feel at all comfortable refusing HIV testing." Predictably, women who were unemployed, had fewer contacts with the health care system, and were younger were still less comfortable refusing the test. In Arkansas, which also has an opt-out testing program that doesn't require written consent, a study found that "16% of women tested did not even know that they had been tested for HIV." Without written consent, "…what they're calling ‘routine testing' will, in practice, be 'mandatory testing," Rose Saxe says.

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And despite decades of public health efforts to reduce the stigma of HIV, the disease still presents unique challenges. Whether routine testing, regardless of the patient's risk profile, reduces stigma or is blind to the challenges of receiving an HIV diagnosis and irresponsibly treats HIV like any other disease is a point of heated debate. The hope that routine HIV testing might someday make the test seem unexceptional and the current reality that an HIV diagnosis can still carry with it discrimination and possible abuse seem irreconcilable, and the voices of those who seek out AIDS services invariably complicate the question. Forcing a patient to know her HIV status can have unintended consequences. After the North Carolina Commission on Public Health vote, Jacquelyn Clymore, executive director of the Alliance of AIDS Services Carolina in Raleigh, told the Raleigh News-Observer, "I have actually never met a pregnant woman through my work who said, ‘No, I don't want the test'…Mothers want the best for their babies." But, the article went on to say, "Occasionally, Clymore…encounters an expectant mother in an abusive relationship who fears finding out whether she has HIV because the abuse might escalate if her partner learns she is positive. That's rare, however."

A comparison of state laws by the Kaiser Family Foundation shows that Arkansas, Michigan, New Mexico, Texas, and Tennessee all require health care providers to test pregnant women for HIV unless the woman specifically refuses the test. Connecticut, Illinois and New York are the only states that test all newborns for HIV, according to the foundation. The New Jersey bill, sponsored by Senate President Codey, would require all pregnant women to be tested for HIV during their pregnancy and again in their third trimester. Each birthing facility in the state would also be mandated to test newborns whose mother's status was either unknown or known to be HIV-positive. The North Carolina requirement would have women who come into health care centers to deliver tested if there was not already an HIV test result on record for them. The Commission's vote must be approved by the state's Rules Review Commission before it is put into effect.

This latest spate of legislation and recommendation regarding testing during pregnancy is occurring in the wake of new guidelines issued by the Centers for Disease Prevention and Control in August of 2006 that would radically alter the way the disease is approached in American doctors' offices, hospitals, community-based health care centers, and other testing sites. The CDC recommended that rather than require that a physician obtain a separate, signed consent form prior to administering an HIV test, physicians should routinely test all patients aged 13 to 64 unless patients express opposition. Pre-test counseling focused specifically on the patients' individual risk factors and on risk reduction measures the patient could take would be dispensed with, while other elements of pre-test counseling, including, according to the ACLU, "providing information about HIV, the risks and benefits of testing, the implications of test results, how test results will be communicated, and the opportunity to ask questions," would be preserved. Within those guidelines, the CDC also specifically addressed testing pregnant women; the guidelines stated that HIV testing should now be included in the routine battery of tests a pregnant woman undergoes, and in order to avoid the test, a woman would have to specifically decline it. General consent to medical care would suffice as consent to an HIV test. And regardless of prior testing, women in their third trimesters would be routinely tested again in jurisdictions with an at least one case of HIV infection per 1,000 pregnant women per year.

After the CDC issued the new guidelines, civil liberties groups expressed concern that "opt-out" testing would the individual right of the patient to refuse treatment. And for pregnant women, the debate over mandatory screening plays out in particularly telling ways. The public health benefit is instinctively clear – not only diagnosing the mother, but in the possibility of preventing infection outright in the fetus. But establishing a right for the fetus to have the mother tested is dicey at best. "Testing during pregnancy, labor or right after birth, tests the woman's status, not the baby's, and thus should only be done with her informed consent – it shouldn't be mandatory," observes Jennifer Rudinger, executive director of the ACLU in North Carolina. "We would far prefer legislative efforts to increase access to comprehensive prenatal care – including HIV testing – during pregnancy, at a time when the woman can make informed decisions about her health, can choose to take certain medications during pregnancy, and can arrange ahead of time to have a C-section to reduce the risk of transmission." And the New Jersey bill, ACLU chapter executive director Deborah Jacobs, argues, "needlessly sacrifices the rights of women and parents" and "deprives women of their moral authority to make decisions for themselves and for children."

Opt-out testing laws tend to assume that laws to require specific consent, whether written or oral, and pre-test counseling deter individuals from agreeing to or seeking out an HIV test. According to a report prepared by the ACLU AIDS Project and Lambda Legal, this is a fictitious belief; the real reason people don't get tested, they claim, is that they don't feel that they are at risk. The ACLU/Lambda report also points out that if physicians are too busy to obtain written, informed consent from patients, they will likely be too busy to engage the patient in adequate post-test counseling, whether the patient tests positive or not. When in 2003, the CDC introduced a previous round of new testing standards, the agency acknowledged that physicians had a propensity both to being crunched for time and uncomfortable discussing sex and drugs with their patients – in other words, the patients' risk factors. "Because time constraints," the agency wrote when it issued its 2006 guidelines, "or discomfort with discussing their patients' risk behaviors…some providers perceive[d] requirements for prevention counseling and written informed consent as a barrier."

So which is it? Are providers too busy and embarrassed to do pre-test counseling, or are patients put off by the paperwork and the extra lecturing?

Groups such as the ACLU also say that patients who are tested because it is mandatory are less likely to be prepared for a positive diagnosis and seek follow-up care than those who choose to be tested. "The CDC should be commended for trying to increase the number of people tested for HIV, but eliminating the only safeguards that guarantee that testing is voluntary and informed does little to ensure that people will receive the care they need," says Saxe. "Studies have shown that patients who are tested without consent are less likely to get the follow-up care that is critical to maintaining good health."

As with many public health interventions, what at first seems self-evident in fact has layers of consequence. With the CDC-initiated changes afoot, advocates for pregnant women will have to watch closely to see how states balance, or don't, women's autonomy and HIV prevention.

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.

Analysis Law and Policy

California Bill Aimed at Anti-Choice Videos Draws Free Speech Concerns

Amy Littlefield

“We wanted to make sure that we updated ... laws to kind of reflect a changing world and to make sure that we actually protect the doctors who provide these important services to women,” California Assemblymember Jimmy Gomez said, adding that his legislation would also protect patient safety and access to abortion.

A California bill that would make it a crime to distribute secret recordings of health-care providers—like the ones David Daleiden used in his smear campaign against Planned Parenthood—has cleared a legislative hurdle, but faces opposition from media groups and civil liberties advocates, who say the legislation is overly broad.

It is already illegal in California to record, whether in audio or video form, a confidential communication without the consent of all parties involved. But California Assemblymember Jimmy Gomez, who introduced AB 1671, told Rewire that while current law specifically forbids the distribution of illegally recorded telephone calls, there is no similar protection for videos.

“We wanted to make sure that we updated those laws to kind of reflect a changing world and to make sure that we actually protect the doctors who provide these important services to women,” Gomez said, adding that his legislation would also protect patient safety and access to abortion.

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AB 1671 makes it a crime if someone who violates California’s existing law against secret recordings “intentionally discloses or distributes, in any manner, in any forum, including, but not limited to, Internet [websites] and social media, or for any purpose, the contents of a confidential communication with a health care provider that is obtained by that person.”

Violators could be jailed for up to a year and fined up to $2,500, penalties similar to those already in place for making illegal recordings. But the new measure specifies that for both recording and distribution, the fines apply to each violation; that means someone like Daleiden, who circulated his videos widely, could quickly rack up heavy fines. Repeat offenders could face fines of up to $10,000 per violation.

The effort to pass the bill comes as abortion providers face a rising tide of threats and secret recordings. Besides Daleiden’s efforts, covertly recorded footage of clinic staff has cropped up in the documentary HUSH and in videos released by the anti-choice group Live Action. Planned Parenthood reported a ninefold increase in harassment at its health centers in July last year, when Daleiden began releasing the deceptively edited videos he claimed showed the organization was illegally profiting from fetal tissue donation. (Multiple federal and state investigations have found no wrongdoing by Planned Parenthood.) The National Abortion Federation recorded an “unprecedented” spike in hate speech and threats against abortion providers last year, peaking with the fatal shooting of three people at a Colorado Springs Planned Parenthood.

Increased Threats

“It was so alarming and so extensive that our staff that normally tracks threats and violence against providers could not keep up,” NAF President and CEO Vicki Saporta told Rewire. The organization was forced to hire an outside security firm.

Beth Parker, chief legal counsel for Planned Parenthood Affiliates of California, told Rewire the new legislation is needed to protect the safety of abortion providers.

“If our providers aren’t safe, then they won’t provide, and we won’t have access to reproductive health care,” Parker said in a phone interview.

Daleiden’s group, the Center for Medical Progress, is based in California, and much of his covert recording took place there. Of the four lawsuits he and his group face over the recordings, three have been filed in federal court in California. Yet so far, the only criminal charges against Daleiden have been lodged in Texas, where a grand jury tasked with investigating Planned Parenthood instead indicted Daleiden and fellow anti-choice activist Sandra Merritt for purportedly using fake California driver’s licenses as part of their covert operation. The charges were later dropped for procedural reasons.

Last summer, California Attorney General Kamala Harris announced plans to review whether the Center for Medical Progress violated any laws, and in April, state investigators raided Daleiden’s apartment. Harris has not yet announced any charges. Daleiden has accused officials of seizing privileged information, a claim the attorney general’s office told Rewire it is working on resolving in court.

Harris, meanwhile is running for Senate; her campaign website describes her as “a champion for a woman’s right to choose.”

“We think there is an excellent case and the attorney general should have prosecuted,” Beth Parker of Planned Parenthood Affiliates of California told Rewire. “Daleiden did more than just publish the videos, as we know, I mean he falsified driver’s licenses, he falsified credit cards, he set up a fake company. I mean, we have, as you know, a major civil litigation against him and his conspirators. I just can’t answer to why the attorney general hasn’t prosecuted.”

Parker said AB 1671 could increase incentives for law enforcement to prosecute such cases.

“What we’ve heard as we’ve been working [on] the bill is that criminal law enforcement almost never prosecutes for the violation of illegal recording,” Parker said. “It’s just too small a crime in their view.”

Assemblymember Gomez also said he hopes his bill will facilitate the prosecution of people like Daleiden, and serve as a deterrent against people who want to use illegal recordings to “undermine the fact that people have this right to have control over their bodies.”

“That’s the hope, is that it actually does change that landscape, that DAs will be able to make a better case against individuals who illegally record and distribute,” Gomez said.

Vicki Saporta of the National Abortion Federation says the actions of law enforcement matter when it comes to the safety of abortion providers.

“There’s certainly a correlation between law enforcement’s response to criminal activity aimed at abortion providers and the escalation or de-escalation of that activity,” Saporta said, citing the federal government’s response to the murders of abortion providers in the 1990s, which included the deployment of federal marshals to guard providers and the formation of a task force by then-Attorney General Janet Reno. “We had more than a decade of decreases in extreme violence aimed at abortion providers, and that ended in 2009 with the murder of Dr. [George] Tiller.”

But media and civil liberties groups, including the Electronic Frontier Foundation and American Civil Liberties Union of California, have expressed concerns the bill could sweep up journalists and whistleblowers.

“The passing of this law is meant to chill speech, right, so that’s what they want to do,” Nikki Moore, legal counsel of the California Newspaper Publishers Association, which opposes the legislation, said in an interview with Rewire. In addition to potential criminal penalties, the measure would create new civil liabilities that Moore says could make journalists hesitant to publish sensitive information.  

“A news organization is going to look at it and say, ‘Are we going to get sued for this? Well, there’s a potential, so we probably shouldn’t distribute it,’” Moore said.

As an example of the kind of journalism that could be affected by the bill, Moore cited a Los Angeles Times investigation that analyzed and helped debunk Daleiden’s footage.

“Planned Parenthood’s bill would criminalize that behavior, so it’s short-sighted of them if nothing else,” Moore said.

Assemblymember Gomez disagrees about the scope of the bill. “We have tailored it narrowly to basically say it applies to the person who illegally recorded the video and also is distributing that video, so it doesn’t apply to, say, a news agency that actually ends up getting the video,” he said.

Late last week, the California Senate Appropriations Committee released AB 1671 to the state senate floor on a vote of 5 to 2, with Republicans opposing it. The latest version has been amended to remove language that implicated “a person who aids and abets” the distribution of secret recordings, wording civil liberties groups said could be used to sweep in journalists and lawyers. The latest draft also makes an exception for recordings provided solely to law enforcement for investigations.

But the ACLU of California and the California Newspaper Publishers Association said they still oppose the bill. (The Electronic Frontier Foundation said it is still reviewing the changes.)

“The likelihood of a news organization being charged for aiding and abetting is certainly reduced” under the new language, Moore said. But provisions already exist in the California penal code to implicate those accused of aiding and abetting criminal behavior.

“You can imagine scenarios where perhaps the newspaper published it and it’s an anonymous source, and so now they’re aiding and abetting the distribution, and they’re the only person that the prosecutor knows might have been involved,” Moore says.

In letter of opposition sent in June to Assemblymember Gomez, Kevin Baker, legislative director of the ACLU of California, raised concerns about how the measure singles out the communications of health-care providers.

“The same rationale for punishing communications of some preferred professions/industries could as easily be applied to other communications —e.g., by law enforcement, animal testing labs, gun makers, lethal injection drug producers, the petroleum industry, religious sects,” Baker wrote.

Gomez said there could be further changes to the bill as talks aimed at resolving such opposition continue. An earlier version passed the assembly easily by a vote of 52 to 26. The latest draft faces an August 31 deadline to pass the senate and a concurrence vote in the assembly before the end of the session. After that, Gomez said he hopes California Gov. Jerry Brown (D) will sign it.

“If we can strike the right balance [between the rights of privacy and free speech], my hope is that it’s hard for him not to support it,” Gomez said. 

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