Every member of Congress has pages of accurate information on women’s health at their fingertips – more than 900 pages to be exact – now that they have the latest edition of “Our Bodies, Ourselves.”

Thanks to supporters of OBOS’s Educate Congress campaign – inspired by a road trip to deliver “Our Bodies, Ourselves” to then-Rep. Todd Akin – we hand-delivered or mailed the newest edition and a letter signed by prominent health policy experts to all members of the U.S. House and Senate.

Educate Congress launched with a simple premise: Everyone deserves access to accurate information concerning women’s reproductive and sexual health – especially those who write the laws.

Deliveries began Feb. 28, when I spent the day meeting with members on Capitol Hill. It was the day that the House finally passed the Violence Against Women Act, which made the trip particularly poignant.

Joining me were Christy Turlington Burns, founder of Every Mother Counts (EMC), and Erin Thornton, EMC executive director. We collaborated on scheduling and delivered EMC materials along with “Our Bodies, Ourselves,” including a special petition for women members of Congress congratulating them on their leadership role and asking them to affirm support of policies that protect the health and well-being of girls and women around the world, especially those that will reduce infant and maternal mortality rates.

Two National Women’s Health Network (NWHN) interns, Alysson Reddy and Grace Adofoli, provided invaluable logistics support and shoulder-bag transport of the rather hefty copies of “Our Bodies, Ourselves.” We received warm receptions not only from those who know the book and OBOS’s work, but also from members who want to be better prepared to address key reproductive health concerns.

Our first meeting was with Rep. Jim McGovern (MA), a consistent advocate of evidence-based policies. Christy and Erin presented a copy of EMC’s excellent documentary about maternal mortality, “No Woman, No Cry.”

Alysson and Grace helped me walk the corridors of three House office buildings in record time, with stops in the offices of Representatives Adam Kinzinger (IL), Steven Horsford (NV), Gary Peters (MI), Kay Granger (TX), Betty McCollum (MN), Chellie Pingree (ME), Michael Capuano (MA), Marsha Blackburn (TN), James Clyburn (SC), Jackie Speier (CA), Nita Lowey (NY), Anne Kirkpatrick (AZ), Joseph Kennedy (MA), and Cheri Bustos (IL).

The day ended on the Senate side, with visits to Senators Jeanne Shaheen (NH) and Elizabeth Warren (MA). Diana Zuckerman, president of the National Research Center for Women and Families (NRCWF), joined me in discussing women’s health with Sen. Warren and her chief of staff, Mindy Myers.

Time was running short, so Allyson and Grace returned later that week to deliver books and letters to Senators Mitch McConnell (KY), Rob Portman (OH), Carl Levin (MI), Mark Begich (AK) Charles Grassley (IA), Pat Toomey (PA), Jeff Flake (AZ), and Christopher Coons (DE).

OBOS has already received personal thank-you notes from several members of Congress who indicated that the book will be a useful resource. We’re confident it will be of value to staff members working on policy issues.

If you visit the D.C. office of your representative or senator in the coming months, let us know if you get a chance to ask about how “Our Bodies, Ourselves” might have been referenced. Establishing sound, science-based policy about reproductive health is no easy feat, but it will be all the more likely if each of us finds ways to promote this goal.

OBOS will continue to monitor where information interventions are needed. Please help fund our efforts to send books to state legislators, educational leaders, and other public officials.

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Photo, clockwise: EMC’s Erin Thornton and Christy Turlington Burns, Rep. Gary Peters, OBOS’s Judy Norsigian, and NWNH interns Alysson Reddy and Grace Adofoli; Judy and Christy with Sen. Jeanne Shaheen; Judy, Sen. Elizabeth Warren and NRCWF’s Diana Zuckerman; Rep. Chellie Pingree; Judy and Christy with Rep. Jim McGovern (center). 

Plan B on a drugstore shelf in Canada. Photo / Cory Doctorow

What a frustrating week in the ongoing battle over evidence-based health policy.

To the surprise and disappointment of women’s health advocates, the U.S. Justice Department on Wednesday filed an appeal to prevent girls under age 15 from gaining over-the-counter access to emergency contraception.

Approaching the date U.S. District Judge Edward Korman’s order making levonorgestrel-based emergency contraceptive pills (such as Plan B and Next Choice) available without restrictions would go into effect, the Obama administration also requested a stay pending appeal, meaning the judge’s order would not be implemented according to schedule.

The judge’s ruling last month was in response to the Center for Reproductive Rights’ renewed lawsuit seeking over-the-counter access to the morning-after pill.

Responding to the appeal, Nancy Northrup, CRR president and CEO, said in a statement:

Women who urgently need emergency contraception have been delayed in getting it or denied access entirely for more than a decade because of the political maneuverings of the last two presidential administrations. The federal court has made clear that these stalling tactics were based purely on politics, not science.

We are deeply disappointed that just days after President Obama proclaimed his commitment to women’s reproductive rights, his administration has decided once again to deprive women of their right to obtain emergency contraception without unjustified and burdensome restrictions.

In the appeal documents, the administration argues that the court overstepped its authority and improperly interfered with the rulemaking process; the judge should have instead sent the issue back to the FDA for further action.

“We aren’t focused in this appeal on the merits of the secretary’s decision,” a Justice Department official, who spoke on condition of anonymity, told The New York Times. “What we’re focused on is that the remedies that the judge ordered were beyond his authority.”

Ironically, overstepping is what many would argue the administration did in 2011 when HHS Secretary Kathleen Sebelius overturned a decision by FDA scientists to make the contraceptive pills available without restriction.

The administration also argues that since the actual plaintiffs in the case are all over age 15, and it’s not a class action suit, that no harm is done to the plaintiffs by granting the stay (see below). By making this argument, the administration avoids addressing the potential harm to girls who are prevented from accessing a drug both FDA scientists, and the judge, said should be available.

The administration claims that the public would suffer irreparable harm if the stay is not granted; if the ruling is allowed to go forward and later overturned, it would create confusion for women, who might “mistakenly believe that they can obtain the drug without a prescription or at certain locations where it used to be available, but is no longer.”

We’re also supposed to believe the appeal has nothing to do with politics. A Justice Department official told The New York Times: “This is a decision that the Justice Department is making in representing our client: FDA. This is not a political decision. It’s not had White House intervention or involvement. This in our judgment is the right legal step to take in this case.”

Meanwhile, FDA Approves Making Plan B Available to Teens Age 15 and Up
The decision to appeal came just one day after the FDA announced its approval of Plan B One-Step emergency contraception pills without a prescription for teens age 15 and older. The drug was previously only available without a prescription to women 17 and older.

It’s a great step forward; however, younger women, for whom access to a healthcare provider may be most difficult, are still left without prescription-free access to the drug, which must be used within a limited window.

The FDA adds to the burden by specifically requiring proof of age. From the FDA’s press release:

The product will now be labeled “not for sale to those under 15 years of age *proof of age required* not for sale where age cannot be verified.” Plan B One-Step will be packaged with a product code prompting a cashier to request and verify the customer’s age. A customer who cannot provide age verification will not be able to purchase the product. In addition, Teva has arranged to have a security tag placed on all product cartons to prevent theft.

In addition, Teva will make the product available in retail outlets with an onsite pharmacy, where it generally, will be available in the family planning or female health aisles. The product will be available for sale during the retailer’s normal operating hours whether the pharmacy is open or not.

The ID/proof of age requirement is a big hurdle for many teens. Many states set an age requirement of 16 for a driver’s license or learner’s permit. Obtaining a state ID (related to driving or not) costs money, and hours for doing so are often limited. And undocumented teenagers are unable to obtain a legal ID at any age.

“While welcomed by some as an acceptable compromise,” said Nancy Stanwood, Physicians for Reproductive Health board chair-elect, the “FDA decision to approve the sale of emergency contraceptive Plan B One-Step to those 15 years and older with government-issued identification does little to improve real access for already-vulnerable women and young teens. Plan B has a time limit, and too many women in the U.S. have gone without it because of unfair, unnecessary, and medically unjustified barriers to access.”

Writing at ThinkProgress, Tara Culp-Ressler explains other reasons why the policy shift is still problematic, noting in part that it simply isn’t based on science, and the high cost remains a barrier.

The FDA’s ruling was in response to an amended application request by Teva Women’s Health, the company that makes Plan B One-Step, to make the drug available without a prescription to women age 15 and older. The FDA in 2011 denied Teva’s application to make Plan B One-Step available for all females of reproductive age. And still the debate goes on.

In the United States, 87 percent of counties have no abortion provider, forcing some women to travel potentially long distances for reproductive health services, while others delay making a decision until later in the pregnancy, when an abortion is more costly and restrictions are more severe.

One way to increase access is to increase the range of providers who are permitted to do abortions, such as nurse practitioners, nurse midwives, and physician assistants.

Currently, non-physician clinicians can perform surgical (aspiration) abortions legally only in Montana, Oregon, New Hampshire and Vermont. In some states, these providers can oversee medication abortions, though that, too, has become a contentious issue as more legislatures seek to restrict women’s access to abortion.

Are laws requiring physicians to perform surgical abortions necessary, from a patient-safety perspective? Not according to a recently published study.

Tracy Weitz, director of Advancing New Standards in Reproductive Health, a collaborative research group and think tank at University of California, San Francisco, and Diana Taylor, ANSIRH’s director of research and evaluation, primary care initiative, set out to answer the question of healthcare outcomes and applied for a waiver of California legal statutes that limit surgical abortion to physicians. They note:

In 2008, 1.21 million abortions took place in the United States, with more 200,000 (18%) in the State of California. Nationally, 92% of abortions take place in the first trimester, but Black, uninsured, and low-income women have less access to this care. In California, only 87% of women using state Medicaid insurance obtain abortions in the first trimester. Because the average cost of a second-trimester abortion is substantially higher than that of a first-trimester procedure, shifting the population distribution of abortions to earlier gestations would result in safer, less costly care. Increasing the types of health care professionals involved in abortion care is one way to reduce this health care disparity.

For the purpose of the study, 40 certified nurse midwives, nurse practitioners and physician assistants in ANSIRH’s Health Workforce Pilot Project, who already had experience with medication abortions, were trained to perform surgical abortions. (ANSIRH’s Early Abortion Training Workbook, which is used in medical schools around the world, is also available online.)

The authors compared the outcomes of abortions performed by those medical professionals to outcomes of abortions performed by 96 physicians. Patients were not randomized to a provider type; they were asked if they would agree to have the non-MD provider on duty perform their first trimester abortion.

Complications were rare in general, with only 1.3 percent of the 11,487 abortions resulting in any type of complication. While the newly trained CNM/NP/PA group had slightly more complications than the group with abortions performed by more clinically experienced MDs, the difference was not considered significant.

The authors conclude that “only 1 additional complication would occur for every 120 procedures as a consequence of having an NP, CNM, or PA as the abortion provider,” and these would largely be minor complications, such as a low-level infection or bleeding that could be treated at home or at an out-patient clinic.

The study was published in the American Journal of Public Health. Based on the findings, the authors argue in favor of expanding the types of providers who can perform abortions:

The benefits of expanding access to abortion for California’s women outweigh the small initial difference in risk, particularly because it would likely move many second-trimester abortions into the first trimester, significantly decreasing the overall risk of complications, which increases with gestational age. Expanded access is also likely to afford more women the opportunity to obtain care without the additional indirect costs associated with traveling to a geographically distant abortion provider.

We would hope, after reading this study, that more state legislatures would consider removing restrictions on non-physician clinicians, but we know such a move would require great amounts of political will, as the trend in recent years has been to restrict rather than increase access.

There’s been much discussion lately about routine mammogram screening for breast cancer, including, according a new study, the very real psychological harm connected to false positive readings.

Complicating this information further is the issue of breast density. Dense breasts have less fat and more glandular and connective tissue. While some women’s breasts become less dense and more fatty as they age, other women’s breasts remain relatively dense.

Why does this matter? Having dense breast tissue makes it harder to obtain an accurate reading of mammograms. It also increases a woman’s risk of developing breast cancer.

However, questions remain about what women should do with that information. In fact, recent research suggests that actual risk of death from breast cancer is not increased for women with denser breast tissue.

Despite a lack of certainty about how dense breast tissue affects health outcomes, a handful of states have mandated that providers discuss breast density with women. On April 1, California will become the fifth state with a breast density notification law in place. Similar bills have been introduced in other states.

At the federal level, the Breast Density and Mammography Reporting Act was introduced in Congress in 2011, but never made it out of committee. It, too, would require that women be told about breast density, the correlation with cancer, and that they might benefit from supplemental screening tests.

It’s not clear, however, if additional tests would even help.

The authors of a recent commentary in the medical journal Radiology note that while explaining the increased risk of cancer to women with dense breasts “seems ethical, reasonable, and appropriate,” there is little known about what additional follow-up might help those women.

They conclude that “the advocacy push to legislate mandatory reporting of breast density and possible adjunct screening for all women with heterogeneously or extremely dense breasts is far outpacing the reporting of evidence that supplemental screening may provide better outcomes for these patients.”

They also raise concerns about invasive procedures: “Because some cancers detected at screening may not go on to cause symptoms or death, additional interventions performed on these excess cancers would only increase morbidity for these patients.”

These concerns are similar to those raised about routine mammography in younger women — that more testing may increase harm to women from extra procedures, while not actually increasing survival rates.

Breast Cancer Action addressed mandatory notification laws in late 2012, coming down against such legislation:

Unfortunately, the importance of breast density is still not well understood and as a result there is no clear action for women who receive this information. Breast Cancer Action believes that medical practitioners should discuss all aspects of a woman’s health with her and we do not believe legislation is the appropriate way to address the issue of breast density. We believe resources and energy are better spent on working for better medical care and understanding the ways to prevent breast cancer in the first place.

Laura Newman, a medical journalist, has also looked at this issue. Her Patient POV blog has a couple of clear, useful posts, including “Are Dense-Breast, Right-to-Know Laws Helpful?” and “Is the Bar High Enough for Screening Breast Ultrasounds for Dense Breasts?”

Where does this leave women, especially those who may be told they have dense breast tissue as a result of one of these new laws? Unfortunately, there is no clear answer right now.

In late February, the FDA approved the Natrelle 410 Highly Cohesive Anatomically Shaped Silicone-Gel Filled Breast Implant for breast augmentation in women age 22 and older and breast reconstruction in women of any age.

It surprises us that the FDA did not hold a public Advisory Committee Meeting prior to approval. All we found was the press release, which notes the FDA based its approval on seven years of data from 941 women, a relatively small number:

Most complications and outcomes reflect those found in previous breast implant studies including tightening of the area around the implant (capsular contracture), re-operation, implant removal, an uneven appearance (asymmetry), and infection. In addition, investigators observed fissures (cracks) in the gel of some Natrelle 410 implants. This is a characteristic called gel fracture and is unique to this implant.

The issue was not reported in a six-year study of the Natrelle silicone gel implant, published in the August 2012  issue of  Aesthetic Surgery Journal.

That study was funded by Allergan (and led by a researcher who is a paid consultant, royalty recipient and stockholder in Allergan). Studies paid for by manufacturers are not uncommon, but it makes it harder to tell what sorts of biases there might be in the results. In this case, researchers noted that between 19 and 43 percent of women required additional surgery — the number varied by whether the implants were for augmentation, revision or reconstruction. The researchers also reported that between 5 and 14 percent of patients experienced an implant rupture.

The FDA also did not post approval documents online, so the seven-year data, which would possibly include newer research results, is not readily available to the public.

The FDA has long known about the temporary nature of silicone gel breast implants. In 2011, the FDA released a report on their safety, urging women to “assume that you will need to have additional surgeries” — a point the FDA reiterated in the press release announcing approval of the Naturelle 401:

“It’s important to remember that breast implants are not lifetime devices. Women should fully understand the risks associated with breast implants before considering augmentation or reconstruction surgery, and they should recognize that long-term monitoring is essential,” said Jeffrey Shuren, M.D., director of the FDA’s Center for Devices and Radiological Health.

“The data we reviewed showed a reasonable assurance of safety and effectiveness,” said Shuren. “We will be looking at the results from post-approval studies that will focus on their long-term safety and effectiveness.”

Diana Zuckerman, president of the National Research Center for Women & Families, criticized the approval, questioning why a public meeting wasn’t held and noting that “Allergan has not done a good job of doing post-market studies once their implants have been approved.”

“It seems likely that the FDA decided it was better to hide this information than to make it public at a meeting where implant patients could talk about the health problems that have been caused by these implants,” wrote Zuckerman, who has written frequently about the safety of breast implants.

The FDA is requiring additional “post-approval” studies on several aspects of the Natrelle 410, including study of long-term outcomes in more than 2,000 patients followed over 10 years; rare adverse events in a study to include at least 11,500 women; collection of additional safety and effectiveness data; improvement of the format and content of the patient labeling; and analysis of implants that are removed and returned to the manufacturer.

The additional studies will help determine the risks of these implants. Unfortunately, the results won’t be known for years. In the meantime, women will have implants in their bodies  that have not undergone a rigorous review.

While most birth control pills currently available in the United States are safe for most women, some newer pills that contain the progestin drospirenone have come under scrutiny because of an increased risk of blood clots. Birth control pills containing drospirenone include Beyaz, Gianvi, Loryna, Ocella, Safyral, Syeda, Yasmin, Yaz and Zarah.

The European Medicines Agency (EMA) announced late last month that it would take another look at so-called third and fourth generation oral contraceptives, including those with drospirenone, and consider whether use of these drugs should be limited.

The agency also plans to review whether current product information is enough to properly inform women and their health care providers of the risks. The agency has also said, though, “There is no reason for any woman to stop taking her contraceptive” — a rather confusing message for women wondering if they should switch to other types of pills.

The EMA previously reviewed whether this type of drug (specifically Yaz) could be marketed for use in preventing acne, but decided it could not based on concerns about the clot risk; it factored in that if women who no longer needed contraception or no longer needed the acne treatment continued on the drug, they would be exposed to unnecessary additional risk.

The U.S. FDA also did a review of pills with drospirenone, and is requiring language about the higher risk of blood clots to be added to the labels. As we noted last year, women’s health experts, including OBOS, have concerns about that review, and about leaving these pills on the market when safer alternatives exist.

That’s a key point in considering pills with drospirenone. While the risk of clots is small, we know the risk is higher with these pills than with other oral contraceptives. As one expert testified before the FDA, “I don’t usually vote against choices, but this time I did. And the reason is because on the benefit side, I didn’t see any improved benefit over the existing available choices.”

In the Women’s Health Activist newsletter in spring of 2012, Amy Allina, program and policy director of the National Women’s Health Network, wrote:

The question for a woman is, what should she weigh these risks against? As some have pointed out, the blood clot risks of pregnancy are greater than those of drospirenone pills. Is that the right basis of comparison? The Network does not believe it is. There are other, safer, ways women can avoid the risks of pregnancy – including contraceptive pills that don’t contain drospirenone. Drospirenone pills don’t provide a unique benefit over other available contraceptive pills. We’re also concerned that most women using drospirenone pills are unaware that other contraceptive pills are safer.

The NWHN has asked the FDA to remove these pills from the market. Allina wrote: “We believe that women who are looking for contraceptive options to help them postpone or prevent pregnancy should not be unnecessarily exposed to a higher risk of blood clots when there are safer alternatives with the same benefits available.”

Erin Thornton, Judy Norsigian, Rep. Jim McGovern, and Christy Turlington Burns

Last fall, following a sex-ed road trip with The Ladydrawers to deliver “Our Bodies, Ourselves” to former Rep. Todd Akin (of “legitimate rape” fame), Our Bodies Ourselves launched Educate Congress, a campaign to deliver the book to all members of Congress and key administration officials.

The basic premise: Everyone deserves access to accurate information concerning women’s reproductive and sexual health — especially those who write the laws.

Today OBOS kicked off delivery of the book, as Judy Norsigian, OBOS executive director and one of the original authors of “Our Bodies, Ourselves,” hand-delivered copies of the newest edition to about 20 legislators and staff members.

The point was made that the problem isn’t just poorly chosen words; rather, a lot more needs to be done to advance evidence-based health policy.

Norsigian walked the halls of Capitol Hill with Christy Turlington Burns, founder of Every Mother Counts, and EMC’s executive director, Erin Thornton. They submitted EMC’s petition to female members of Congress, asking them to support policies that protect the health and well-being of girls and women around the world, especially those that will reduce infant and maternal mortality rates.

Doing this on the day that the House finally passed the Violence Against Women Act made it particularly poignant.

NWHN interns Allyson Reddy and Grace Adofoli with Judy Norsigian and Rep. Chellie Pingree

Thanks to Allyson Reddy and Grace Adofoli, interns at the National Women’s Health Project, the book launch was a success. More books will be delivered in the coming weeks, until every member of Congress has, in their office, up-to-date information they can rely on when drafting bills that have a real impact on girls and women.

A big thank you to the supporters of Educate Congress! And a special shout out to fellow road-trippers Anne Elizabeth Moore, Rachel N. Swanson, Nicole Boyett and Sara Drake; Congress scheduler Christina Knowles; everyone who participated in the making of the Educate Congress video, especially Paul Noble and Anthony Cupaiuolo (bro!); and Malcolm Woods, who helped organize the Educate Congress launch at the National Press Club and kept the word going on Twitter (with the aid of “The West Wing” staff). All of you made this happen!

Erin Thornton, Christy Turlington Burns (holding the film “No Woman, No Cry”) Rep. Gary Peters, Judy Norsigian, Allyson Reddy, and Grace Adofoli

Although we celebrated the 40th anniversary of Roe last week, access to abortion is not only difficult for many women, but legislators are working to make it even more difficult.

On Saturday, Melissa Harris-Perry opened a discussion on her show with these remarks:

Before 1973′s Roe v. Wade, complications from abortion was the leading cause of death among women of childbearing age. This was especially true for women of color. As access to abortion once again narrows, it puts women’s lives in danger. So while much of the debate about reproductive rights is focused on the legal interpretation and the Constitution and the bodily rights of women, we can’t forget the basic issue of access. [...] Access is the frontier on which we need to be fighting. 

It was a great conversation (watch above if you missed it!), and we were thrilled to see Steph Herold, a New York Abortion Access Fund board member and a contributor to the new edition of “Our Bodies, Ourselves” (which we’re aiming to send to all members of Congress; learn more here), and Feministing editor Chloe Angyal taking part in the round table, along with The Nation editor/publisher Katrina vanden Heuvel and Demos senior fellow Bob Herbert.

Herold talked about the implications of the Hyde Amendment, which since 1976 has banned Medicaid coverage of abortion, and how that limits access for low-income women.

“We really believe that however people feel about abortion, politicians shouldn’t be be able to deny women health care coverage just because they’re poor,” said Herold.

As legislatures reconvene for the new year, we’re keeping an eye on proposed bills that further restrict access to abortion.

In the states:
Proposed bills in Arkansas would prohibit all abortions after 20 weeks, ban the practice of remotely prescribing medication for abortions (otherwise known as telemedicine), and ban abortion coverage in health insurance exchanges.

A bill has been introduced in Florida to ban all abortions except in medical emergencies and to sentence abortion providers (or those who assist or own/run clinics) with up to life to prison. The bill has failed in previous years.

The previously defeated personhood bill is back in Oklahoma.

You may have seen news of a New Mexico bill from Republican state Rep. Cathrynn Brown, which would make it a felony for a woman to have an abortion if the pregnancy resulted from rape or incest. The bill frames such abortions as “evidence tampering.”

Brown claims the bill is being misunderstood; at the very least, it’s poorly written, as it very clearly prohibits not only “compelling or coercing another to obtain an abortion” but also “procuring or facilitating an abortion.” The bill is reportedly being re-written; advocates should keep an eye out for clarification of the language.

Here’s another summary on more abortion restrictions being proposed around the country.

At the federal level:
Multiple bills have been proposed by Tennessee lawmakers to prohibit Planned Parenthood from receiving Title X family planning funding (here’s my personal take as a Tennessean).

A bill has been introduced to define “life” as starting at fertilization.

Other bills would require hospital admitting privileges nationwide for abortion providers (a medically unnecessary move intended to restrict access), and would criminalize people who take a minor across state lines to access abortion, including a sister or aunt as well as other relatives and friends.

Although this January marks the 40th anniversary of the landmark Supreme Court decision legalizing abortion, we know that there is still much work to be done to ensure reproductive justice for all women.

The Guttmacher Institute reports that 2012 saw the second highest number of abortion restrictions enacted in a single year; the Center for Reproductive Justice addresses each state in this report.

Among the provisions ultimately defeated were “fetal personhood” bills in Mississippi and Oklahoma. But the notion that fetuses should be protected from the women carrying them has resulted in the restriction and punishment of women across America.

Lynn Paltrow, executive director of National Advocates for Pregnant Women, and Jeanne Flavin, a professor of sociology at Fordham University and chair of NAPW’s board, have put together an extremely interesting and important study: “Arrests of and Forced Interventions on Pregnant Women in the United States, 1973–2005: Implications for Women’s Legal Status and Public Health.”

Paltrow and Flavin (who is also the author of the 2008 book “Our Bodies, Our Crimes: The Policing of Women’s Reproduction in America“) tried to identify and examine U.S. cases from 1973, the year of Roe v. Wade, through 2005, in which a medical or government authority tried or succeeded in stripping a woman’s autonomy because of pregnancy. The study appears in the Journal of Health Politics, Policy and Law.

These cases could have involved threat of or actual arrest, incarceration, or increased prison/jail time; detention in a hospital, treatment program, or mental institution; or forced medical intervention. Descriptive detail of several cases is provided, along with summary statistics on the findings.

Looking at legal, medical and other sources, Paltrow and Flavin analyzed 413 cases, which they speculate are “a substantial undercount,” because cases were difficult to identify and some sources referred to additional cases.

The data reveals substantial racial, income and geographic disparities. While almost every state had multiple cases, the regions with the most were the south (56 percent) and midwest (22 percent). These cases disproportionately targeted black women (52 percent of cases overall, and 72 percent of cases in the south), and 71 percent involved low-income women (enough so that they qualified for indigent defense).

Most women who faced criminal charges were charged with felonies; a greater percentage of black women (85 percent) were charged with felonies than white women (71 percent).

The authors explore how these disparities are interlinked with disparities in drug laws, disproportionate application of criminal laws, and outdated stereotypes about cocaine use (such as the “crack baby” myth).

The vast majority of the cases — 84 percent — involved allegations of illegal drug use. In the remaining cases, “women were deprived of their liberty based on claims that they had not obtained prenatal care, had mental illness, or had gestational diabetes, or because they had suffered a pregnancy loss.”

Although concern for the health of the fetus/infant is typically offered as a reason for increased scrutiny or detainment of pregnant women, in 64 percent of the cases there was no reported health issue cited in the allegation.

Chillingly, most cases were reported by people in so-called “helping professions”: health care providers (41 percent), social workers (12 percent), and hospital, child protective services, or police personnel (17 percent). Health care providers reported black women at a higher rate (48 percent) than white women (27 percent).

As the authors point out:

Due in part, no doubt, to the strong public health opposition to such measures, no state legislature has ever passed a law making it a crime for a woman to go to term in spite of a drug problem, nor has any state passed a law that would make women liable for the outcome of their pregnancies. Similarly, no state legislature has amended its criminal laws to make its child abuse laws applicable to pregnant women in relationship to the eggs, embryos, or fetuses that women carry, nurture, and sustain. No state has rewritten its drug delivery or distribution laws to apply to the transfer of drugs through the umbilical cord. To date no state has adopted a personhood measure, and no law exists at the state or federal level that generally exempts pregnant women from the full protection afforded by federal and state constitutions.

In other words, nothing about existing law should make women subject to such persecution. They also note that public health groups have observed that targeting pregnant women may lead to women avoiding medical care or having unwanted abortions to avoid increased and punitive scrutiny.

Paltrow and Flavin also highlight these cases in the context of proposed personhood laws, which would give fetuses individual rights and potentially could lead to increased prosecutions of women. They authors note that they have identified “more than two hundred cases initiated against pregnant women since 2005 that also overwhelmingly rest on the claim of separate rights for fertilized eggs, embryos, and fetuses.”

Opponents to personhood laws have cautioned that such measures could lead to forced medical interventions on pregnant women along with possible punishment for miscarriages and stillbirths. While personhood proponents often dismiss these warnings as scare tactics, the research shows there is good reason to be concerned.

Paltrow and Flavin conclude with a call for change:

In light of these continued efforts and our findings, we challenge health care providers, law enforcement and child welfare officials, social workers, judges, and policy makers to examine the role they play in the arrests and detentions of and forced interventions on pregnant women. We call on these same people to develop and support only those policies that are grounded in empirical evidence, that in practice will actually advance the health, rights, and dignity of pregnant women and their children, and that will not perpetuate or exacerbate America’s long and continuing history of institutionalized racism.

Finally, our study provides compelling reasons for people who value pregnant women, whether they support or oppose abortion, to work together against personhood and related measures so women can be assured that on becoming pregnant they will retain their civil and human rights.

The whole article is well worth a read if you can get a copy. The abstract is freely available online.

The 112th Congress ended without reauthorizing the Violence Against Women Act (VAWA), threatening the funding of programs and services that prevent and respond to domestic violence, rape, stalking, and other forms of violence against women. It’s the first time Congress has failed to reauthorize VAWA since it was signed into law in 1994.

The failure is due to objections by House Republicans over new provisions adding protections for LGBTQ individuals, Native American women on tribal lands, and undocumented immigrants — protections that are considered “controversial,” according to Florida Republican Rep. Sandy Adams.

Those provisions are included in the Senate version, which passed with bipartisan support in April. The House passed its own version, stripping those provisions and making other changes that the administration has refused to approve.

The National Task Force to End Sexual and Domestic Violence Against Women addresses objections to the LGBTQ and Tribal provisions with a smart analysis of myth vs. fact. The organization also provides a good outline of many of the problems with the House version and its possible effects on vulnerable communities, and it asks the 113th Congress to reauthorize VAWA immediately.

Please encourage your senators and representatives to pass an inclusive version of VAWA. You can also contact House Speaker John Boehner’s office (202-225-0600 or 202-225-6205) and House Majority Leader Eric Cantor’s office (202-225-2815 or 202-225-4000).

Here’s further commentary and analysis, on both the bills and the failed reauthorization. Feel free to suggest other commentary or news items in the comments.

• We live in a culture of violence, and it needs to stop. — Adrienne K., Native Appropriations
• Congress Fails to Reauthorize Violence Against Women Act — National Center for Lesbian Rights
• House bill takes VAWA name, leaves Latinas behind – National Latina Institute for Reproductive Health
• Blocking VAWA, The GOP Keeps Up the War on Women — Erika Eichelberger, The Nation
• GOP House’s inaction on VAWA shows bigotry — Ilyse Hogue, CNN
• Racism and Sexism Go Hand in Hand in Opposition to VAWA Reauthorization — Scot, Changelab
• No real answers on ‘death’ of Violence Against Women Act — Jamil Smith, Melissa Harris-Perry show; Jamil also had a great analysis back in December, Why does the Violence Against Women Act remain stalled?
• House GOP lets the Violence Against Women Act expire for first time since 1994 – Zerlina, Feministing
• In Last Salvo on War On Women for 2012 Legislative Session, Congress Refuses to Renew VAWA – Robin Marty, RH Reality Check
• Everything You Need to Know About The GOP’s Opposition To Protecting Native American Women From Abuse — Erik Stegman, ThinkProgress
• Violence Against Women Act Debacle: Why Congress Should Be More Diverse – Tara Culp-Ressler, The Atlantic
• Why the Violence Against Women Act is a LGBT issue – Suzy Khimm, Wonkblog

This January 22 marks the 40th anniversary of Roe v. Wade, the landmark U.S. Supreme Court decision that made abortion legal.

Many local and national pro-choice and reproductive justice organizations will be holding events to mark this anniversary. Here are a couple we know about, including one we’re excited to co-sponsor with many great organizations in our home state. Know of others or want to share your own? Please tell us in the comments!

In Massachussetts, we’re co-sponsoring the Roe v. Wade 40th Anniversary Legislative Breakfast and Lobby Day at the State House on January 14. You can sign up to attend the breakfast, with keynote speaker Paula Johnson, MD, MPH, Executive Director of the Connors Center for Women’s Health and Gender Biology, and/or the lobby events, a chance for you to meet with elected officials after a brief advocacy training. Please sign up online to participate.

In Manhattan on Jan 14, Physicians for Reproductive Choice and Health is hosting “Roe Revealed: Doctors Tell Their Stories on the 40th Anniversary of Legalized Abortion,” with Dr. Willie Parker, Dr. Linda Prine, and a special guest. The event with these abortion providers is $20; additional tickets are required for the reception.

NARAL Pro-Choice America is holding its annual Blog for Choice Day on Jan 22. This year, they’re asking participants to share their own stories of why they’re pro-choice. As usual, you can sign up online to join in.

While there’s plenty of reason to celebrate 40 years of Roe, legislative attacks on reproductive and sexual health and choice continue around the country. In 2011 alone, U.S. lawmakers enacted 92 abortion-restricting provisions in bills designed to curtail women’s rights to health services. According to the Guttmacher Institute, that number shattered the previous single-year record of 34 such provisions enacted in 2005. Such laws make it more difficult, and painful, for women to exercise their legal right to terminate a pregnancy.

What will you do this year to ensure reproductive justice for all? For starters, check out Our Bodies, Our Votes, our resource for fighting back against attacks on women’s health and rights. While you’re there, order a sticker and submit your picture to our awesome Click It, Stick It, Share It tumblr.

Related:
History of Abortion in the U.S. – an “Our Bodies, Ourselves” excerpt
The 40th Anniversary of Roe v. Wade: A Teachable Moment, by Linda K. Kerber

by Alice Dreger

Dr. Mark Sloan, a pediatrician based in northern California, has written a very helpful overview of a controversial fetal engineering intervention: prenatal dexamethasone for pregnant women considered at risk of giving birth to a daughter with congenital adrenal hyperplasia (CAH). The article has been posted on the Our Bodies Ourselves website .

Although CAH is relatively rare, the use of this prenatal intervention should interest and concern all women’s health advocates for two reasons:

• This fetal intervention has been pushed through the use of highly problematic sexist and heterosexist stereotypes.
• The unscientific and unethical ways in which the intervention has been deployed send up all sorts of red flags with regard to patient safety and patients’ rights to informed consent.

CAH is a serious inborn endocrine disease; newborns are screened for it, and people who have it usually require lifelong hormonal management. One “side effect” of CAH is atypical (different from average) sex development in some females.

In an effort to prevent that atypical sex development, some doctors have offered prenatal dexamethasone, a synthetic steroid, to pregnant women identified through genetic analysis as being at risk of having a child with CAH. Giving a pregnant woman dexamethasone cannot prevent CAH or cure her offspring of CAH. The intervention is offered only in an attempt to ensure typical sex development in the offspring who are genetic females.

A genetic female fetus with CAH may develop differently from average females because CAH can result in high levels of masculinizing hormones. The process is called virilization, because it leaves a female skewed more toward the middle or even the male end of the genital development spectrum. (For an animated primer on genital development, click here.)

A female with CAH may be born with a large clitoris, even one that looks something like a penis; her labia may be joined like a scrotum; and her vagina and urethra in some cases will form joined together, which can put her at increased risk for infection and, at sexual maturity, difficulties with intercourse and giving birth.

Although in theory ensuring typical genital development may sound reasonable, in practice, this off-label use of dexamethasone has been a high-risk game. For the drug to work, doctors must give it starting by about week 7 of fetal life, before the genitals sexually differentiate. At this early stage, doctors cannot know if the woman is carrying a male or female fetus or whether the fetus even has CAH.

Only about 10 percent of the fetuses exposed will actually turn out to be females with CAH, meaning about 90 percent of those exposed will bear all the risk of fetal biochemical engineering with no chance to benefit.

As Dr. Sloan explains, the CAH-affected population of girls and women also shows signs of having their brains “virilized” during development. They are more likely than non-CAH girls to be tomboyish, and more likely to grow up to be lesbian, bisexual, or to identify as male in terms of their gender. (This population contributes to the idea that gender identity and sexual orientation have a biological component.)

I find it disturbing that the chief clinical-researcher proponent of the intervention has indicated that she’s interested in seeing if the intervention can “successfully” prevent this “behavioral masculinization” — in other words, she’s interested in seeing whether the fetal intervention can lower the rates of tomboyism, lesbianism, and bisexuality in this population.

As University of Michigan pediatric psychologist David Sandberg told Time magazine, “Maybe this gives clinicians the idea that the treatment goal is normalizing behavior. To say you want a girl to be less masculine is not a reasonable goal of clinical care.” (I agree.)

Most troublingly, as Dr. Sloan notes in his article, there has been shockingly little study of what this intervention does to the exposed children’s health.

After nearly 30 years of use, we have stunningly little data on efficacy and safety on this off-label use. It appears that, in many cases, women have been offered this drug without the protections of being enrolled in formal studies, after being lured into the intervention with claims that it “has been found safe for mother and child.”

Dr. Sloan discusses a paper I recently authored on this matter with my colleagues Ellen Feder, PhD, of American University, and Anne Tamar-Mattis, JD, of Advocates for Informed Choice. I encourage you to read Dr. Sloan’s article, and then, if you want to learn more about how this history unfolded, read our article, which is available for free download.

I also encourage you to read the “Dex Diaries” series I have mounted at fetaldex.org. There you’ll find a series of short essays unpacking this story from a personal point of view.

Kiira Triea (who recently died of cancer) wrote there about her own experience of having been changed in the womb; Fran Howell has relayed about how hard it is to watch this after herself being exposed to DES in the womb; Ellen Feder has expressed sympathy for the poorly informed mothers; Aron Sousa has analyzed the game that has apparently been played here with regard to federal funding; and Anne Tamar-Mattis has reported on the real silent majority of doctors who are troubled by how this population has historically been treated.

Finally, I encourage you to watch the videos at The Interface Project, where real people born with uncommon forms of sex development explain why no body is shameful.

Alice Dreger is Professor of Clinical Medical Humanities and Bioethics at Northwestern University’s Feinberg School of Medicine. Her personal website is alicedreger.com, and you can follow her on Twitter @AliceDreger.

A sweeping U.S. study published on Nov. 22, 2012 in the New England Journal of Medicine shows that mammograms have done surprisingly little to catch deadly cancers before they spread. At the same time, they have led more than a million women to be treated for growths that never would have threatened their lives. 

Women over 40 are routinely advised to have yearly mammograms, and it’s widely believed that having one is key to protecting a woman’s health.

Although experts agree that diagnostic mammograms are beneficial (cases where there is a breast lump or other symptoms), there is much controversy about screening mammograms, which are performed on women with no signs of cancer. Mammograms detect breast cancer, although many people believe mistakenly that they prevent breast cancer. We now know that the mortality benefits remain quite small.

Eight trials performed in the United States, Canada and Europe have evaluated the ability of screening mammograms to decrease the death rate from breast cancer, as well as overall mortality. Looking at the overall death rate, not just death from breast cancer, is essential, because this approach also evaluates whether the screening test and any subsequent treatment may be causing other harms.

Overall, the early studies showed a 30 percent reduction in the risk of dying from breast cancer in women who were screened by mammography. In 2001, a critical review of all eight trials by the Cochrane Collaboration found that six of them were sufficiently flawed to invalidate their results. The Cochrane Collaboration then pooled the results of the two remaining studies and found no evidence to support the use of screening mammography.

The U.S. Preventive Services Task Force (USPSTF) evaluated the trials also. Although recognizing many of the same flaws, the USPSTF felt only one trial was sufficiently flawed to be invalidated. They pooled the results of the remaining trials and found a 16 percent reduction in the risk of dying of breast cancer in the women in the screened group.

The meta-analysis published in 2006 by the Cochrane Collaboration confirmed that screening does slightly reduce breast cancer mortality, but that it also leads to over-diagnosis and overtreatment of breast cancer. They concluded:

(F)or every 2000 women invited for screening throughout 10 years, one will have her life prolonged. In addition, 10 healthy women, who would not have been diagnosed if there had not been screening, will be diagnosed as breast cancer patients and will be treated unnecessarily. It is thus not clear whether screening does more good than harm.

In a recent issue of the New England Journal of Medicine, Dr. Archie Bleyer and Dr. Gilbert Welch summarized the latest analyses as follows:

Despite substantial increases in the number of cases of early-stage breast cancer detected, screening mammography has only marginally reduced the rate at which women present with advanced cancer.

And this is the key to meaningful breast cancer screening — that we reduce the rate at which women have to be treated for late stage cancer.

When the data for women under 40 were studied (these are women who generally don’t get regular mammograms), Dr. Welch and Bleyer wrote:

There was a larger relative reduction in mortality among women who were not exposed to screening mammography than among those who were exposed. We are left to conclude, as others have, that the good news in breast cancer — decreasing mortality — must largely be the result of improved treatment, not screening.

Dr. Susan Love, a long time clinician and researcher, would like to see less emphasis on screening and more focus on cancer prevention and treatment for the most aggressive cancers. (Roughly 15 percent to 20 percent of breast cancers are deadly.)

“There are still 40,000 women dying every year,” Dr. Love notes. “Even with screening, the bad cancers are still bad.”

As Donald Berry, a biostatistician at M.D. Anderson Cancer Center in Houston, has pointed out:

Most breast cancers are not lethal, however found. Screening mammograms preferentially find cancers that are slowly growing, and those are the ones that are seldom deadly. Getting something noxious out of the body as soon as possible leads women to think screening saved their lives. That is most unlikely.

The challenge now is to make more widespread the use of techniques that help clinicians identify biological markers that will distinguish between the lethal and benign types of tumors. This appears to be the next big advance in reducing mortality from breast cancer.

Mammography, like other detection tools, is imperfect (it misses about 20 percent of lumps due to dense breasts and other factors). Some would consider it a very weak detection tool, and given the harms of overtreatment (for example, unnecessary chemotherapy and radiation treatments), it is not surprising that some women will want to forego screening mammography.

Women need to carefully consider these factors and decide for themselves what would be best, although friends, caregivers, and even commercial interests may tell them that having routine mammograms is the only rational choice. What really helps is knowledgeable and supportive counseling.

This article was originally posted at Cognoscenti, WBUR Boston’s ideas and opinions section, and is re-posted with permission.

“All that stuff I was taught about evolution and embryology and the Big Bang Theory … all that is lies straight from the pit of Hell.”

“If it’s a legitimate rape, the female body has ways to try to shut that whole thing down.”

Comments like these are what spurred us to create Educate Congress, a campaign to deliver “Our Bodies, Ourselves“ to every member of the U.S. House of Representatives and Senate. Because these comments really were spoken by members of Congress.

And that’s not the only problem. Misinformation is too often used as the basis for crafting bad policy, which is why we’re working to show how Congress can advance evidence-based reproductive health policy, based on science and fact. Reproductive health policy pertains to issues such as birth control, abortion, breast and ovarian cancers, the effects of environmental toxins on women’s health and fetal development, and more.

We’re into our final countdown, with just eight days left to reach our goal of raising $25,000 to deliver books to every member of Congress and key members of the administration and government agencies whose work involves health care policy.

You can select a specific representative or senator to receive the book or donate to the general fund. There are great perks to show our thanks, including stickers, tote bags, signed copies of “Our Bodies, Ourselves” by OBOS founders and Gloria Steinem, and a signed Legitimate Road Trip poster commemorating the drive from Chicago to St. Louis with The Ladydrawers to rush sex-ed materials to Rep. Todd Akin.

Please help us reach our goal — because, really, doesn’t everyone deserve access to comprehensive sex-ed?

Watch American Voices: Our Bodies Ourselves on PBS. See more from Need To Know.

The most recent episode of the PBS news show “Need to Know” featured an excellent yet disturbing segment about state legislatures slashing funding to women’s health clinics.

Mona Iskander looks at the effects this is having on women — particularly low-income women — and their ability to obtain birth control, STI screenings, and other reproductive health care services. Our own Judy Norsigian, OBOS’s founder and executive director, weighs in at the end about women’s health activism.

As part of the show’s online series “American Voices,”  Judy covers the beginnings of the women’s health movement in the United States and the launch of “Our Bodies, Ourselves.” She discusses the long history of denying women access to services as well as information about their bodies, and notes the effects of so many years of misinformation:

Over the years, we saw repeated attacks on good sex education. So much so that we then ended up with federally funded abstinence-only sex education in many of our schools. And the damage done there is still showing, well into the 21st century. I’ve met professors at medical schools who have said incoming medical students have said that using condoms promotes HIV/AIDS. And that comes straight from their abstinence only sex education in high school.

Watch the video above (just 3.5 minutes) for a look at how hard women have worked to ensure access to accurate, evidence-based information, and why it’s more important than ever  that politicians use this information when setting health care policy.

Want to help educate Congress? Send a copy of “Our Bodies, Ourselves” to your favorite representative or senator. It makes a great holiday gift!