Posts by Guest Post

April 3, 2014

Smoke and Mirrors and Women, Oh My

by Katherine L. Record

Last week, the Supreme Court attracted lots of attention when it heard arguments about whether a corporation can exclude mandatory preventive benefits from its employee health plan, based on a religious objection to certain types of healthcare.

This is a tale as old as time; religion has long been the basis for opposition to reproductive (i.e., women’s) health – including the preventive healthcare now in question, contraception.

Yet this argument has nothing to do with government infringement on the practice of religion.

In fact, the corporation, Hobby Lobby, covered two of the four contraceptive devices in dispute until its lawyers were actually arguing the issue in court, apparently to little detriment to the company’s faith in God. What’s more, Hobby Lobby’s 401(k) includes more than $73 million invested in the companies that produce these objectionable contraceptives (e.g., intrauterine devices, emergency contraception).

This has not stopped Hobby Lobby from arguing that the Affordable Care Act (ACA) is threatening its freedom, as a corporation, to practice religion.

This is a clever argument. We take religious freedom seriously, as we should. Masking coverage of FDA-approved contraceptives, as the ACA requires, as an infringement on faith is catchy. Nonetheless, it is nothing more than smoke and mirrors, which we, as attorneys, have a knack for creating.

Practicing law is often a matter of distilling a problem into sterile elements and stringing them together to form a line of reasoning that favors a given conclusion. Generally, this allows judges to apply the law with an even hand, no matter how complicated life gets.

Yet it also allows us to paint an issue as something it is not. This is particularly problematic when the issue is inequality, a concept lawyers have masqueraded for years (justifying slaves as property, segregation, limited voting rights, a narrow definition of marriage).

Last week we did it again.  Here’s the picture Hobby Lobby painted:

The ACA’s requirement that most health plans cover preventive services, including all FDA-approved contraception, violates the Religious Freedom Restoration Act of 1993 (RFRA). RFRA is a federal law that bars Congress from enacting a law that substantially burdens religious practice, even if it generally applies to all faiths, which passes muster under the First Amendment. In other words, RFRA creates more robust protection of religious freedom than the First Amendment.

Let’s break it down:

(1) RFRA protects the corporation’s right to practice religion just as it does a person’s right to practice (i.e., a corporation is a person, which is the case under the First Amendment, but has never been treated as such under this federal law);

(2) covering certain types of contraception substantially burdens this corporation’s religious practice; and

(3) the government does not have a compelling interest that justifies this insufficiently narrowly tailored intrusion into the company’s faith.

Sounds good, right?

It did to the Court. Last week, the attorney representing the United States and the Justices of the Court focused on this argument just as Hobby Lobby painted it, waxing poetic on statutory interpretation, principles of corporation law, the distinction between for-profit and non-profit tax status, and the intention of Congress as it existed in 1993 – when it enacted RFRA to protect a “person’s” right to religious practice.

All of this is irrelevant.

The legal profession is being dishonest by cloaking the real issue in legal doctrine. Hobby Lobby paints contraceptives as the Scarlett letter of the ACA, alleging that coverage of some types disrupts their Christian faith. Yet the ACA requires coverage of all FDA-approved contraception to protect women’s health – not to promote sex that does not produce offspring. In fact, 98% of sexually active Catholic women use contraception, yet the Catholic Church marches on.

As it turns out, healthcare is healthcare, even if you have a uterus.

Women who do not space out pregnancies are at higher risk for adverse outcomes – both for the mother and the child. Women who get pregnant accidentally – whether unintentionally or unwillingly, are more likely to give birth prematurely, to develop depression, to avoid prenatal care.

Moreover, some women require contraception for reasons entirely unrelated to conception (e.g., amenorrhea or menstrual irregularities, fibroids, endometriosis). And not all women can take the kind of contraception Hobby Lobby deems pious (e.g., an intrauterine device can be medically necessary if a woman cannot take the pill).

In short, women and children are healthier when medically indicated contraception is available – which is why contraception is a healthcare benefit. Requiring companies to offer the same level of healthcare to both female and male employees does not impede religious autonomy, it keeps the workforce healthy.

In June, the Supreme Court will issue a ruling couched in terms of religious autonomy. Yet it will not affect religious practice, Hobby Lobby’s or otherwise. Rather, the Court will determine whether an employer can charge women more than men for preventive services (i.e., provide comprehensive coverage for men and partial coverage for women). In other words, the Court is once again considering equality, masqueraded as a religious threat.

Are women sufficiently person-like to access the same degree of medical coverage as men? The Court very well might say no.

Fortunately, the law is not a foregone conclusion. Indeed, over time, the Court has reversed itself on matters once considered predetermined by our forefathers (e.g., the federal ban on gay marriage, criminalization of sodomy, and the status of black persons as, well, persons). Women might not be equal to men quite yet, but there is hope.

Katherine L. Record is the Senior Fellow at the Center for Health Law and Policy Innovation (CHLPI) at Harvard Law School and a member of the Our Bodies Ourselves board of directors. This post was previously published on Harvard Law School’s Petrie Flom Center Bill of Health blog.

February 28, 2014

Stillbirths and Infant Health Risks Higher in California’s Artificially Conceived Infants

by Miriam Zoll

A new study published in the Journal of Perinatology online has found that in California from 2009-2011 there was a 24- to 27-fold increase in multiple births and significantly higher rates of preterm births, lower birth weights, fetal anomalies and stillbirth among infants born through assisted reproductive technologies (ART) or artificial insemination (AI) compared to babies conceived naturally.

The retrospective study was based on 2009-2011 data from the California Office of Statewide Health Planning and Development and conducted by researchers from the Loma Linda University School of Medicine.

The CDC’s Assisted Reproductive Technology Surveillance report for 2010 indicates that “ART-conceived births were highest in California, followed by Texas and New York,” and that nationwide that year, 46.4 percent of all ART births were multiples, compared to only three percent among naturally conceived infants.

While California has the most infertility clinics of any state in the country, the large increase in multiple births from ART/AI found in the study was higher than but not significantly different from those reported nationally. However, data from the Centers for Disease Control and Prevention (CDC) indicate that California’s rates of low- and very low-birth weight infants, as well as premature and very premature infants, exceed national averages.

According to the new Journal of Perinatology study, in 2009, 18,405 California women underwent ART cycles, which refers to procedures in which the egg and sperm are handled outside the body. Of the total number of women in California undergoing ART, only 3 percent of women underwent AI or intrauterine insemination.  A total of 15,953 embryos were transferred, resulting in 7,155 pregnancies and 5,710 live births. Roughly 1,718 of these births — or 30.1 percent — were multiple births consisting of twins, triplets or more.

The researchers found that when compared to naturally conceiving women, preterm labor and cesarean section were four times higher for women who underwent ART/AI, and their length of stay in hospital was twice as long. Compared to infants conceived naturally, among ART/AI pregnancies, there was a four- to five-fold increase in stillbirths, and a two to three-fold increase in fetal anomalies.

These findings align with those from another California study conducted by researchers at UCLA and published in 2013 in the Journal of Pediatric Surgery. Compared to naturally conceived babies, researchers found higher rates of congenital malformations among ART multiple babies — particularly of the eyes, neck, heart and urogenital tract.

In one case study highlighted in the Journal of Perinatology report, of 92 ART/AI infants born at Loma Linda Children’s Hospital over an 18-month period from 2012-2013, 10 very premature babies died on the first day. Seventeen were singleton births, with half requiring admission to the Neonatal Intensive Care Unit (NICU). Of the 27 pairs of ART/AI twins, one was stillborn, four deaths followed shortly after birth, and 22 sets were admitted to NICU. Three deaths occurred in two out of six sets of triplets and all surviving triplets required admission to the NICU. The average NICU hospitalization length of stay for these ART/AI babies averaged 38.4 days, with a range of anywhere from three to 138 days.

“We need to educate the public about these very serious risks,” Dr. Mitchell Goldstein of the Department of Pediatrics, Division of Neonatology, Loma Linda University School of Medicine,who co-authored the report, said in an interview. “If elective single embryo transfers became a higher priority among infertility specialists, we would likely see significant reductions in these severe health and stillbirth rates among ART/AI infants and reduced risks for mothers.”

Throughout the United States, the higher incidence of multiple and preterm births linked to ART/AI remains a significant public health concern, particularly for older women and their babies. A 2013 article in the New England Journal of Medicine estimated that 36 percent of twin births and 77 percent of triplet and higher-order multiple births in the U.S. were attributable to medically assisted conceptions.

The American Society for Assisted Reproductive Medicine recommends that reproductive endocrinologists transfer single embryos for most women, yet many doctors continue to transfer multiple embryos with the hope of procuring at least one live birth.

“Once a patient becomes pregnant through ART/AI,” explained Goldstein, “many reproductive endocrinologists lose touch with them and are then completely disconnected from any risks mother and infant may encounter. Neonatologists and infertility specialists must work together to reverse these trends and ensure the least harm.”

The findings from this study reflect one conducted by the University of Adelaide of roughly 300,000 patients in Southern Australia who had received assisted conception between January 1986 and December 2002. Published in January 2014 in PLOS ONE, the study also found higher rates of stillbirth, prematurity, low birth weight and neonatal deaths among ART infants.

But in this Australia study, even singletons from assisted conception were more likely to be stillborn or have low birth weight than babies born from spontaneous conceptions. Outcomes varied by type of assisted conception. For example, very low and low birth weight, very preterm and preterm birth, and neonatal death were markedly more common in singleton births from IVF, and to a lesser degree, in births from intra-cytoplasmic sperm injection (ICSI) where the one sperm is injected directly into the egg. Using frozen-embryos eliminated all significant adverse outcomes associated with ICSI but not with IVF.

In my next post, I’ll look more closely at the financial costs of babies born through assisted technology and what this might mean for insurance coverage.

Miriam Zoll is a member of the Our Bodies Ourselves board of directors, an independent journalist and the author of the new book, “Cracked Open: Liberty, Fertility and the Pursuit of High-Tech Babies.“ 

This blog was previously published on the USCAnneberg Reporting on Health Member Blog and is reposted with permission. Image by TipsTimesAdmin via Flickr.

January 3, 2014

How to Fix the “Travesty” of U.S. Maternity Care – And Ensure Women Have a Full Range of Choices

Anna Fettby Anna Fett

“So, when am I going to get a grandbaby?”

We have not even been married a month and already my mother-in-law has begun peppering my husband and me with this loaded question.

Babies are still the furthest thing from my mind. I moved to Cambridge with big dreams of pursuing a master’s degree and then plowing onward toward doctoral studies. I know very few people who attempt graduate studies and motherhood simultaneously, and for me the former currently takes precedent over the latter.

Besides the occasional prodding from my family, I rarely think about becoming a mother — that is, until I happened to read a startling headline on the JAMA Forum that caught my attention: “Transforming the Costly Travesty of U.S. Maternity Care.”

My curiosity was piqued; while I knew there are problems in the healthcare system, I was unaware that maternity care in particular was suffering a “travesty.”

The article by Dr. Diana Mason begins by ranking the United States as 46th in the world on maternal mortality “with a rate that has doubled since 1987 and is twice that of 31 other nations.” I was shocked.

The fact that the United States could be so far behind other countries was disturbing, but even more troubling was my ignorance on this issue. How did I not know this? Why are we not all discussing the quality of maternity care?

Moreover, how could this be? — especially given the fact that maternal and newborn care is also the most costly reason for hospitalization in the United States.

My brain attempted to process this debacle. We are paying too much for maternal-newborn care without meeting the same standards of quality of many other countries in the world.

Even though pregnant women in America comprise “a largely healthy population that needs few procedures or technological interventions,” writes Mason, the system is set up to encourage unnecessary procedures, such as cesarean sections — “now the most common operating room procedure in the United States” — despite the fact that normal vaginal births cost 30 percent less.

Suddenly “travesty” did not seem such a stretch.

The goal of Mason’s article is to develop ways of improving maternal-newborn care while also reducing costs, which she believes can be done by shifting to the midwifery model of care. I admit hearing the term “midwifery” instantly conjured images of the Middle Ages for me, but in reality midwives still play prominent roles around the world, and in the United States there is a push to expand midwifery services.

There are now 250 birth centers that follow the model that “maternity services should be provided by certified and licensed midwives and family physicians,” while obstetricians should be reserved for “high-risk pregnancies.”

Maternity care at these facilities could be a much more cost effective option than hospitals if health insurance companies and Medicaid were required to pay “birth centers at 100% of the rate of hospitals for the same or equivalent codes, such as for normal vaginal deliveries,” writes Mason. Families have difficulty taking advantage of what would be a cheaper option because their insurance does not cover deliveries by family physicians or midwives.

As I absorbed this article, a deeper concern struck: The transformation that Mason envisions must also encompass the American way of thinking about maternity care. Instead of viewing the professional provider as the one who delivers a mother’s newborn, the midwifery framework holds that the mother gives birth “with the support of the professional” and “with physician and hospital back-up as needed.”

If we aligned our public policy with the midwifery framework, we could appreciate returning the power of choice to American mothers. Women should be able to decide where to give birth — in the hospital, birth center, or home — and they should be able to decide who will attend them: midwives, family physicians, or obstetricians.

But this can only happen after improving insurance and Medicaid coverage, implementing policies that allow women to choose among these options, and ensuring that midwives receive the education and protection they need, as Mason writes, to “practice to the full extent of their training.” Only by tackling the factors Mason raises can we ensure that women have the full range of choices they need to get the maternity care that is right for them and their family.

When, or even if, my husband and I decide to have children, it is a choice that we get to make when it is right for us — despite my mother-in-law’s best attempts at interference. When we have so many choices ahead of us in life, it seems obvious that we should also have options of where and how to receive maternity care.

I am now joining the ranks of those who want to make the transformation of U.S. maternity care a reality.

Anna Fett is a master of theological studies candidate at Harvard Divinity School with a focus in women and gender studies as well as Islamic studies. She will graduate in May 2014.

November 8, 2013

Here’s What ABC World News Did, and Did Not, Get Right in Report on Egg Donors

by Diane Tober / Associate Executive Director, Center for Genetics & Society

ABC World News joined other media this week in addressing the astonishing 74 percent rise over the past 10 years in young women providing their eggs so that other women can create families.

Correspondent Cynthia McFadden interviews egg “donors” and fertility practitioners to explore the risks of egg retrieval, and chats with anchor Diane Sawyer about the story. While the segment lets several misleading statements stand, it gets some important things right.

First, the report is clear about the point that young women, primarily college students, are recruited to become egg providers with offers of thousands of dollars (yet use of the term “egg donor” for what is a commercial transaction is misleading). Women who are considered better-looking are typically paid more, as are white and Asian women, and those who have higher SAT scores and/or athletic skills. More money also goes to “proven donors” — women whose eggs have been used by “intended parents” to achieve a successful pregnancy.

The story also correctly reports — and expresses appropriate surprise about — the lack of short- or long-term tracking of egg providers’ health and the fact that there is no national database for egg providers. As Dr. Jennifer Schneider points out in the segment, egg providers are “not considered patients — they’re considered more like vendors.” They essentially disappear as soon as the procedure is done.

Now let’s turn to the inaccuracies in the ABC World News story.

McFadden interviews Dr. Joel Batzofin, a reproductive endocrinologist, who states that although “nothing is risk free,” egg extraction is “essentially risk free.” He describes the short-term complication known as ovarian hyperstimulation syndrome or OHSS as “extremely rare” and says it occurs in less than 1 percent of cases.

Unfortunately, his claim remains unchallenged in the segment, despite emerging evidence that OHSS occurs much more frequently than that. One prospective study analyzed OHSS rates in 339 women who produced more than 20 ovarian follicles. 49 (14 percent) were hospitalized due to OHSS, 13 (3.8 percent) needed intravenous fluids, and 9 (2.7 percent) needed to have fluid drained from their abdomens.

Egg providers are commonly stimulated to produce more than 20 follicles, and therefore appear to be at much higher risk for OHSS than is currently being reported. A recent study in the Journal of the American Medical Association found that more than 21 eggs were retrieved in 40.3 percent of the retrieval cycles performed on “oocyte donors.”

Furthermore, preliminary collaborative research on egg provider experiences by CGS and We Are Egg Donors has found numerous cases of women experiencing OHSS to the point where they are bedridden for a week or more. Even though doctors and clinicians assure egg providers that OHSS is “rare,” no one is surprised when it occurs.

When donors are in pain and bloated to the point where they look six months pregnant — after their eggs have been retrieved — they are told that this is “normal,” and to rest and drink plenty of fluids. These cases are not even diagnosed as OHSS, let alone reported or tracked, so there is no data to substantiate that it only occurs in 1 percent of cases.

The ABC World News segment is equivocal in its discussion of links between egg retrieval and cancer. McFadden reports that “there are no known long-term medical issues for donors,” but goes on immediately to say that this is “a world of difference from saying [that there are] no long-term issues.”

In fact, some data does suggest that the synthetic hormones used in egg retrieval may increase risk of colon, ovarian, uterine and breast cancers, though it is difficult to prove the connection due to the delayed onset of cancers in former egg providers and infertility patients.

One Dutch study published in Human Reproduction by Dr. Flora van Leeuwen followed over 19,000 women for 15 years and found that those who had undergone at least one IVF cycle were approximately twice as likely to suffer ovarian malignancies as women who had not undergone IVF treatment.

So how does the ABC World News report rate overall? We recognize that it is not possible in a three-minute segment to cover the entire gamut of egg retrieval risks and experiences but would have liked to hear a mention of the side effects of Lupron (which is used off-label and has been known to cause strokes and a variety of dangerous side effects) and Clomid (which has been linked to increased cancer risk in women who don’t go on to become pregnant).

We would also have liked to see correspondent McFadden question the claims made by Dr. Batzofin, and point out that he and others in the infertility industry stand to profit from taking eggs from young women.

At the same time, we applaud ABC World News for its clear and explicit call for follow-up studies of egg providers and for a national database to track their short- and long-term health.

This post was originally published on Biopolitical Times, the blog of the Center for Genetics & Society.

Plus: Raquel Cool, co-founder of We Are Egg Donors, explains the need for a group that supports women considering or who have provided eggs for fertility purposes. Also check out this petition (started by OBOS, the Center for Genetics and Society, and other organizations), which calls for a human egg extraction health registry and for warnings on ads and notices seeking egg donors. And read one young woman’s experience as she contemplates donating her eggs.

October 10, 2013

All Pinked Out in October? There’s a Cure for That! Join the Think Before You Pink Campaign

by Annie Sartor
Policy and Campaigns Coordinator, Breast Cancer Action

Why is the breast cancer epidemic still raging after 30 years of “awareness” and pink ribbon products?

Each year, corporations pack the shelves with pink ribbon products, surrounding us with “breast cancer awareness” messages. These products help to raise billions of dollars in the name of breast cancer, and yet more than 40,000 women in the United States still die of the disease every year.

And many corporations sell pink ribbon products in the name of breast cancer that actually contain chemicals linked to an increased risk of the disease. At Breast Cancer Action, we call this blatant hypocrisy “pinkwashing.”

For 12 years, Breast Cancer Action’s Think Before You Pink campaign has held corporations accountable for their toxic pink ribbon products. This year, it’s time to say we’ve had enough. Instead of targeting pinkwashers one at a time, it’s time to go straight to the source — the chemicals in these products that are making us sick in the first place.

Do you have any idea how many toxic chemicals are in the average pink ribbon product? Nope? Neither do we. Nor does anyone!

Toxic Time is UpAll anyone knows for certain is that only a small handful — about 200 of the over 80,000 chemicals in use in the United States — have been tested for human safety. And that’s a serious problem for all of us.

These chemicals are found in everyday consumer products such as plastics, paint, clothing, and cleaning supplies, including an unknown number of pink ribbon products being sold in the name of breast cancer.

Evidence of the links between environmental toxins and cancer continues to mount. In 2010, the President’s Cancer Panel reported that “the true burden of environmentally induced cancer has been grossly underestimated [and] … the American people — even before they are born — are bombarded continually with myriad combinations of these dangerous exposures.”

And just this week, yet another study came out showing an even stronger link between BPA and breast cancer than we’d previously thought.

Why is pinkwashing so prevalent, and even possible in the first place? Our current chemical policy, the Toxic Substances Control Act, is extremely outdated and woefully inadequate to protect public health from hazardous chemicals in our daily lives.

Thanks to a large coalition of health activists, environmentalists, scientists, and thousands of others, pressure has continued to mount for reform of this outdated and toothless law. If strong TSCA reform legislation moves forward this fall, we will have a real opportunity to enact a bill that could make history and be the biggest win for cancer prevention we’ve ever seen.

We refuse to waste another October watching corporations make money off pink ribbon products that contain toxins linked to breast cancer.

Please join us in taking a stand to protect all of us from toxic chemicals that are making us sick, because the manufacturers of pink ribbon products certainly won’t. Sign our petition to end pinkwashing once and for all via strong chemical regulations. It’s time to turn our outrage over pinkwashing into action and ban the toxins that make us sick in the first place.

September 24, 2013

How Can You Be Sure You’re Getting An Insurance Policy That Covers Maternity Care?

Michelle Andrews of Kaiser Health News answers an important question about maternity care coverage. Read more from the KHN series Insuring Your Health.

Q. My wife and I are newlyweds. We are looking into family insurance plans and are curious about maternity coverage, rates and any limitations. I’m seeing a lot of companies don’t cover maternity benefits or impose six-month restrictions. It seems really complicated and not helpful, to say the least. Any information you can provide will help.

A. This is one of the problems that the health law was designed to address.

The Pregnancy Discrimination Act requires companies with 15 or more workers that offer health insurance to provide maternity coverage for workers and their spouses. But the law doesn’t apply to plans sold on the individual market.

Only 12 percent of those individual plans provide maternity coverage, according to an analysis published last year by the National Women’s Law Center. Plans that do cover maternity services may have a separate deductible of up to $10,000 and impose a waiting period of up to a year before members can use the services, the study found.

All that will change next year. Starting in January, the Affordable Care Act requires all new individual and small group health plans to cover 10 “essential health benefits,” and maternity and newborn care is one of them.

Insurers can’t impose waiting periods for maternity coverage nor charge women higher rates than men, as typically occurs now.

If you buy a plan on the individual market now, chances are you’ll pay extra for maternity coverage, if you can find it at all. But even if you buy a plan now, there’s nothing to stop you from shopping for a plan that meets the new maternity coverage requirements when your state’s health insurance marketplace launches in October. Your new coverage could begin in January, says Carrie McLean, director of customer care at online vendor

If you and your wife do become pregnant before year’s end, you may benefit from another provision of the Affordable Care Act. Under current law, insurers on the individual market typically consider pregnancy to be a pre-existing medical condition and refuse to issue policies to people who are pregnant.

Starting in January, “Nobody can ask them if they’re pregnant and then deny them coverage,” says Judy Waxman, NWLC’s vice president for health and reproductive rights.

Kaiser Health News is an editorially independent program of the Henry J. Kaiser Family Foundation, a nonprofit, nonpartisan health policy research and communication organization not affiliated with Kaiser Permanente. 

September 5, 2013

California Governor Was Right to Veto Bill Allowing Researchers to Pay Women for Their Eggs

by Marcy Darnovsky, Ph.D. and Susan Berke Fogel, J.D.

OBOS is publishing a series of posts on egg donors and the ethical, legal, and health aspects of egg donation. Also read: one woman weighs the risks of donating her eggs to a friend, and a new group forms to share the perspectives of egg donors.

Last month, California Gov. Jerry Brown vetoed a bill that would have allowed researchers to pay women for having their eggs harvested and retrieved. His move was warmly welcomed by women’s health and public interest groups including Our Bodies Ourselves, National Women’s Health Network, Pro-Choice Alliance for Responsible Research, Alliance for Humane Biotechnology and Center for Genetics and Society. (Disclosure: see author affiliations.)

Echoing the longstanding concerns of many progressives about the serious risks of egg retrieval, Brown’s brief but eloquent veto message recognized that “in medical procedures of this kind, genuinely informed consent is difficult because the long term risks are not adequately known.” He also acknowledged that low-income women would face disproportionate temptations to discount the risks. “Putting thousands of dollars on the table only compounds the problem,” Brown wrote.

The vetoed bill, AB 926, was sponsored by the fertility industry’s trade organization, the American Society for Reproductive Medicine. It was supported by several mainstream women’s organizations, and breezed through the Democratic-dominated legislature. Ironically, as Brown noted, the law that this bill would have overturned was approved by near-unanimous votes in both houses.

That 2006 measure established protections for women who provide eggs for research and limited payments to reimbursement for expenses connected to the egg retrieval procedure. “After careful review of the materials which both supporters and opponents submitted, I do not find sufficient reason to change course,” Brown wrote.

The governor’s veto appears to have caught the bill’s supporters by surprise, and their response has been strongly negative, to the say the least. California NOW’s Facebook page asked “WTF Jerry Brown?” and went on to claim that Brown’s move was “consistent with his Jesuit Catholic Monk values” and that “he ignores science and women’s health in favor of the Catholic Conference’s beliefs that women getting compensated equally with male donors is high tech prostitution!”

Along similar lines, another supporter penned a rancorous Huffington Post piece with a headline that accused Brown of treating women like “children and the mentally handicapped.”

Oddly, most of the attacks on the governor — and some media accounts of his veto — have been silent about the existence of progressive and pro-choice opposition to AB 926. Some flatly mischaracterize the opposition as being solely religious and anti-choice. Others briefly acknowledge that pro-choice groups and individuals opposed the bill but describe them as part of a strange-bedfellows “coalition.”

There was indeed a coalition but it did not include any anti-choice groups. Rather it brought together diverse organizations including, besides our groups, Alliance for Humane Biotechnology, Black Women’s Health Imperative, Breast Cancer Action, and Friends of the Earth.

In addition to misrepresenting the nature of the opposition to the bill, its supporters largely failed to actually address the arguments against paying women to provide eggs for research. Although the state’s major newspapers published thoughtful op-eds raising questions about the issue (opinion pieces appeared in the Los Angeles TimesSan Francisco Chronicle and Sacramento Bee), proponents of paying women to provide eggs for research tended to repeat their talking points rather than answer the questions that were raised: Do we have sufficient information about the long-term effects of egg retrieval to ensure the health and future fertility of the women providing the eggs? Is there even enough information to permit “informed” consent? Might the payments for eggs be coercive to low-income women? Can researchers get the supply of eggs they need without resorting to financial incentives?

AB 926 supporters argued that paying for eggs for research is a matter of “equity for women,” which seems to mean several different things at once. One is that women should be paid for providing eggs because men are paid for providing sperm. UC Berkeley medical anthropologist Nancy Scheper-Hughes pointed out the fallacy of this analogy: Selling sperm and selling eggs are totally different matters, she wrote: “One is pleasurable and safe, the other is a complicated and invasive procedure.”

AB 926 supporters also argued that providing eggs for research should be compensated because it is analogous to enrolling in clinical trials, for which healthy people are paid. This too is misleading. In clinical trials, scientists study their subjects to determine the effects of a drug or procedure on the people taking the drug. But scientists do not study the effects of egg-harvesting drugs and procedures on the healthy young women whose eggs they want for their experiments. The object of their interest is only the eggs, not the women.

Finally, AB 926 supporters pointed out that people who need young women’s eggs for their own fertility treatments pay for them, and asked why researchers shouldn’t be permitted to do the same. That brings us to the core question: Should we expand the market in human eggs?

Given that many women who have undergone egg retrieval in the fertility context have experienced serious complications, and that the procedure’s risks are still grossly understudied, we believe that adequate safety data must be collected before we can have a sufficient evidence base on which to make that decision. A well-designed, multi-center prospective trial is long overdue.

AB 926 supporters claimed that they occupy the pro-science and pro-research camp, and that anyone who opposes them (including Gov. Brown) is “anti-science.” But they have had nothing to say about the well-documented short-term egg harvesting risk of ovarian hyper stimulation syndrome, which can cause organ damage, ovarian rupture, and in rare instances death. They also ignored evidence that the drugs used in egg retrieval may be associated with higher rates of cancer and infertility, and the lack of follow-up studies to ascertain what the risks really are.

In 2007, a report by the prestigious Institute of Medicine concluded that too little research had been done on egg retrieval. It noted that with “more data it will be possible to quantify the various risks of oocyte (egg) donation much better than can be done today and to put numbers to the risks that a donor may face.”

Not much has changed since then. But those who believe that it’s fine for women to “work” as egg providers seem indifferent to understanding the occupational hazards it entails, and to investigating what might be done to minimize the dangers.

Currently, New York is the only state that explicitly authorizes payments beyond reimbursement for women’s eggs for research. The practice is prohibited in far more countries than allow it.

We at the Center for Genetics and Society and the Pro-Choice Alliance for Responsible Research have been calling for years now for clinical studies that look at the long-term health effects of retrieving eggs, for both fertility and research. The American public assumes that medical procedures and drugs have undergone careful study and that treatments have been proven safe and effective before being widely used.

Let us be clear: To date, we do not have well-designed, prospective studies of the effects of egg retrieval. Let us start collecting that information and until we have it in hand, let’s rein in the market for eggs instead of expanding it. Doing so will benefit not just the young women who might provide researchers with eggs, but also the many women who undergo egg retrieval for their own or other people’s fertility treatments.

* * *

This guest column was originally published at Huffington Post and has been reprinted with permission.

Marcy Darnovsky, Ph.D., is Executive Director at the Center for Genetics and Society, a public affairs organization working to encourage responsible uses and effective societal governance of reproductive and genetic technologies. She speaks and writes widely on human biotechnologies, focusing on their social justice, human rights, health equity, and public-interest implications.

Susan Berke Fogel, J.D. is the co-founder of the Pro-Choice Alliance for Responsible Research (PCARR), working on cutting edge issues at the intersection of human genetic biotechnology and women’s health and rights. She is also the Director, Reproductive Health for the National Health Law Program, where she is a national expert on reproductive health law, low-income health programs and religious restrictions in health care.

Young women are increasingly being recruited to donate eggs for infertility and research purposes, though numerous health questions remain unanswered. Our Bodies Ourselves is calling for the creation of a mandatory health registry to facilitate long-term tracking and studies to better understand the risks of egg extraction. Please support the Petition for Human Egg Extraction Health Registry & for Warnings on Ads and Notices Seeking Egg Donors, started by OBOS, the Alliance for Humane Biotechnology, Pro-Choice Alliance for Responsible Research, and the Center for Genetics and Society, and endorsed by other organizations.

August 8, 2013

Taking the Stigmatization of Abortion Providers to a New Level

by Carole Joffe

No school district, employee or agent thereof, or educational service provider contracting with such school district shall provide abortion services. No school district shall permit any person or entity to offer, sponsor or otherwise furnish in any manner any course materials or instruction relating to human sexuality or sexually transmitted diseases if such person or entity is an abortion services provider, or an employee, agent or volunteer of an abortion services provider.

Carole JoffeThe above provision is contained in a nearly 50-page bill (pdf) that recently went into effect earlier this year in Kansas. (A judge temporarily blocked two other provisions of the law, but allowed this one to remain.)

To be sure, the relentless assault on abortion that we are currently seeing in other state legislatures — Texas, Ohio, and North Carolina, among others — are far more consequential in the short run. Ambulatory surgical center (ASC) and hospital admitting privilege requirements really do have the capacity to shut down clinics; in Texas, the number of Texas abortion facilities could go from 47 to five in that huge state.

Already, due to a similar ASC requirement, earlier rammed through the Pennsylvania legislature as a cynical response to the Gosnell scandal, a number of clinics in Pennsylvania have closed. And the bans on abortions after 20 weeks, adopted by a number of states, will affect a relatively small number of women, but typically those in desperate medical and/or social condition.

But other provisions of abortion legislation, of which the Kansas one cited above is a prime example, do a different kind of damage. They further the stigmatization and marginalization of abortion providers by making clear that these individuals are not welcome in that most central of community institutions: the schools. It is not just participation in sex education from which Kansas providers are barred.

As Stephanie Toti, senior attorney at the Center for Reproductive Rights, which is challenging this law, told me, “This is unprecedented discrimination against abortion providers. … The prohibition on providers serving as ‘agents’ of a school district has the effect of barring them from serving as chaperones on field trips and engaging in most other volunteer activities.”

So abortion providers are at this moment banned from Kansas schools — and supposedly this will promote the safety of adult women getting abortions, as is the typical sanctimonious rationalization of the various laws we are seeing.

I asked several lawyer colleagues if they knew of other instances in which a whole occupational category was banned by law from volunteering in schools. They did not. Indeed, as far as I can tell, only sex offenders as a class are de facto banned from school grounds.

This shocking ban on abortion providers’ involvement in the schools leads me to recollect other instances I have encountered of attempts to isolate this group and keep them from community involvement. I think of a provider I’ve written about who I call Bill Swinton (not his real name), a family medicine doctor in a small town in the Pacific Northwest. He was deeply involved in both his church and his community, and served for three terms on the local school board. But he was defeated for a fourth term in the late 1980s, as the abortion wars intensified; needless to say, his status as a provider was the key factor in his defeat.

I think as well of another doctor I’ve written about named Susan Golden (also not her real name), in a town in the Midwest, who integrated abortion provision into her family medicine practice. When she and her partner planned to take part in a community health fair, presenting on the care of newborns, the entire event was abruptly cancelled by the anti-abortion owner of the facility where the fair had been scheduled to take place.

As disturbing as these incidents were, they did not have the force, or the legitimization, of law. The Kansas provision does — and as such, takes the stigmatization of abortion providers to a new level.

Assuming the Kansas law, including this provision, is not overturned, we can only speculate as to what effects it might have.

Speaking personally, I remember as a child the enormous pride I felt when my father, a cardiologist, came to my elementary school with his microscope and showed the class wondrous things. As a working mother, I recall how much I valued occasional volunteer stints in my daughters’ schools, getting to know both their classmates and other parents.

It is very disturbing to contemplate that providers and their children will be deprived of these experiences. And it is equally disturbing to contemplate the messages that others in the community will receive from such a ban.

This provision truly is stigma on steroids.

Carol Joffe is the author of “Dispatches from the Abortion Wars” and a professor at the Bixby Center for Global Reproductive Health. This article originally appeared at RH Reality Check and is reprinted with permission.

July 30, 2013

Egg Donors Create Support Group for Women and Push for More Safety Data

We Are Egg Donors website

by Raquel Cool
co-founder of We Are Egg Donors

I recently decided to retire as an egg donor.

This choice is clearly right for me, and although I speak for myself and note that the views expressed below are my own, I know that there are others who share my concerns.

Months ago, I viewed a slideshow by Dr. Jennifer Schneider in which she said that donors are treated more like vendors than patients [Ed note: Schneider's daughter, a three-time egg donor, died of colon cancer at age 31]. That statement has stayed with me. In my experience, the egg extraction process is streamlined, impersonal and automated.

Each busy specialist has a designated purpose and only stays in the room long enough to get what they need, whether it’s blood drawn, a cervical swab, a snapshot of my ovaries, etc. It can be a very draining process, and egg donors have no one to reach out to in these instances because we’re supposed to be “professional.” Even the psychologist is hired to assess — not counsel — the donor.

With the financial component, the donor’s role is more like a professional vendor. This furthers the likelihood that we won’t want to speak up about medical, psychological or health concerns, because the expectation is that we should defer to medical authorities and keep the process efficient.

I’m also troubled by the fact that most donors do not recognize a serious conflict of interest — relying on the advice of fertility doctors whose primary patients are the individuals seeking assisted reproductive technology (ART) services.

OBOS is publishing a series of posts on egg donors and the egg donation process. Previously, Ryann Summers weighs the pros and risks of donating her eggs to a friend.

Egg donors, when viewed as “instruments” for achieving other people’s fertility goals, may have their own important needs neglected, and the financial incentives now in place for medical professionals don’t require paying close attention to the health and well-being of egg donors. Everything is structured to first benefit the agency/fertility center, and then the patients seeking to have a baby. The considerations of the egg donor are last.

For example, I recently worked with an agency/broker that did not inform me that I had the right to choose my own lawyer — they simply told me that my lawyer (who is also the lawyer for the recipient couple using my eggs) would be contacting me.

That lawyer emailed me a document to sign that would waive the “inherent conflicts of interest” of having one legal group represent both parties. I ended up choosing my own lawyer, although the broker resisted (“Well, you can do that, but none of our egg donors ever have.”).

Ultimately, I ended up canceling the process. I realized that I no longer have it in me to participate in an industry that has resisted researching donor health for decades.

I recently spoke with a two-time egg donor who was diagnosed with an advanced case of endometriosis only six months after her last donation. When she reported her diagnosis to the egg donor agency, they invited her to use their services to treat her infertility. They said that many former egg donors have turned to them, years later, being diagnosed with infertility themselves. This saddens me deeply.

I would be open to donating if the health risks were better understood, and if the industry’s practices were designed to value the health and well-being of the egg donor.

The group I recently co-founded, We Are Egg Donors (WAED), has a mission to provide legal, emotional and advocacy support for women considering or providing eggs for fertility purposes. We offer a neutral space where women can engage in transparent conversations about their experiences — without the presence of a commercial or political agenda “guiding” their personal narratives.

Every donor’s perspective is different; this is mine. WAED doesn’t want to create a one-size-fits-all political voice for all egg donors, but we do share a passion for making sure that women who choose to do it are informed, supported, safe, and connected to agencies who will advocate for them.

We are compiling a digital library of information so women have access to more evidence-based information on the process. We are also promoting awareness of and participation in the only national voluntary registry that is tracking the long-term health of those involved in ART procedures: the Infertility Family Research Registry, based at Dartmouth Hitchcock Medical Center in Hanover, N.H.

We welcome the inclusion of additional resources for our website, and I hope to hear from those who share our mission. Please contact me (raquel AT To learn more about WAED, visit

Young women are increasingly being recruited to donate eggs for infertility and research purposes, though numerous health questions remain unanswered. Our Bodies Ourselves is calling for the creation of a mandatory health registry to facilitate long-term tracking and studies to better understand the risks of egg extraction.

Please support the Petition for Human Egg Extraction Health Registry & for Warnings on Ads and Notices Seeking Egg Donors, started by OBOS, the Alliance for Humane Biotechnology, Pro Choice Alliance for Responsible Research, and the Center for Genetics and Society, and endorsed by other organizations.

July 8, 2013

Lessons Learned: Why Midwives Should Matter to Everyone

by Eliza Duggan

eliza duggan“Interesting! … What’s that?”

This is the typical response I received when I told people, especially my peers, that I was writing my senior thesis on midwifery. I became accustomed to saying, “I’m writing on midwifery — midwives,” since most people have at least heard the term “midwife.”

The initial lack of knowledge was discouraging; however, the best parts of my project were the conversations that followed. The more I researched and wrote on midwifery, the more it became clear to me that not only are young people interested in birth and midwifery, but this knowledge could be vital to our futures.

As The New York Times recently reported, U.S. maternity care is the costliest in the world. And yet according to the 2010 World Health Statistics, we rank behind dozens of countries when it comes to such benchmarks as maternal, neonatal and infant mortality rates.

A Times follow-up story on the lack of insurance coverage for midwifery care notes that “in many European countries, midwives attend to most pregnancies, often in clinics, resulting in maternity charges that are a fraction of those in the United States.”

Growing up in a small town in Maine, a place where midwives are well known and well respected in the community, I have always been familiar with home birth. Even with this experience, I did not really think about the political complexity of midwifery, nor the unique position that midwifery holds in relatively rural areas like mid-coast Maine, until I moved away.

I went to Boston for college, and in 2011 I took an internship with the women’s advocacy organization Our Bodies Ourselves. For one of the projects I worked on, I promoted midwifery legislation in Massachusetts that aims to expand the rights of nurse-midwives and license and regulate home birth midwives. The bill didn’t pass then, but it has been reintroduced in the 2013-2014 session.

The more I dove into the issue, however, the more I became surprised at the ambivalent and sometimes even hostile reception to the very idea of midwifery. I had assumed that the famously liberal citizens of Massachusetts would generally have the same attitude towards midwives and home birth that I had. When brainstorming ideas for my senior honors thesis at Boston College, I was compelled to investigate this issue further.

In the fall of 2012, I began doing extensive research on the history of midwifery and how it had become so marginalized in Massachusetts. I interviewed countless home birth midwives, nurse-midwives, childbirth educators, public health experts, and consumers in order to gauge attitudes toward maternity care in Massachusetts.

One of the most troubling things that I found was not only were few people interested in this issue, but the vast majority of people who were involved already had children. Most people my age were unfamiliar with midwives and the topic of childbirth as a whole.

This isn’t surprising; we’re usually not encouraged to consider how we feel about childbirth until we or someone we know becomes pregnant, so often we don’t have a clear sense of our options or knowledge about the process. After getting over their initial discomfort, my friends and classmates became intensely curious about childbirth, and most of them had lots of questions.

While working on my thesis, I realized that there is a need for discussion about childbirth before pregnancy. We need to know our options so we can make informed decisions about how we want our children to be brought into the world — and so we can support public policies that are best for mothers and babies.

This, I believe, should be an easy fix. The countless conversations I had with my peers have shown that pregnancy and birth are interesting topics, and young men and women are eager for accurate information, too.

Eliza Duggan is a 2013 graduate of Boston College, where she majored in English and women’s studies. Her time at OBOS and her thesis work inspired her to pursue women’s advocacy. She will be a first-year law student at the University of California at Berkeley Law School in the fall.

July 3, 2013

Egg Donation is Made to Look Easy, but Questions and Health Risks Remain

First in a series on egg donors and the egg donation process.

by Ryann Summers

Recently, a former co-worker and his romantic partner sent me a text message that left me reeling.

It essentially read: Hey, can I have ur eggs? Thx.

Few couples would be better equipped to raise a well-loved child than these two men, and I fully supported their decision to start a family. But I wondered how we had arrived at the point where this request has become so casual that it can be communicated in fewer than 140 characters. At least take me out to dinner.

I don’t fault my co-worker; his question mirrors how the issue is presented in our culture. As a woman in her early 20s, I am bombarded by advertisements seeking my eggs.

Recently when I was riding the T in Boston, I found myself staring at the face of a smiling baby, and a dollar amount. It seems, well, easy.

Egg donation payments range anywhere from $5,000 to $10,000; some solicitations offer amounts as high as $20,000, or even $100,000, for donors with specific characteristics. I could definitely benefit from thousands of dollars, and hey, I probably have eggs to spare, right?

These attractive compensation offers lack any balancing information about risks and hazards, creating a deus ex machina temptation: As far as I know, I have the potential to help create life for a deserving future parent — and make a staggering profit.

These two potential outcomes are, in fact, quite possible. It can be life-changing and rewarding to help others realize their dream of having children. The sky-high payment — sky-high, at least, to many college students, the prime demographic — is just gravy in this scenario.

But in a different light, it can be a bit like putting a price on the creation of life. Or, tilt again, and it’s simply reimbursement for the donor’s time, as well as the physical risk and discomfort.

So I dug a little deeper, and what I found is while the perspective may shift, there are some immutable realities that are rarely included in donor discussions.

Unlike the process men undergo to donate sperm, the preparation and procedure involved in egg donation require a longer-term commitment — a woman’s body is hormonally altered through the process, and she undergoes surgery.

I’d like to see ads note that fact, along with the known risks of egg donation. The ads don’t mention ovarian hyperstimulation syndrome (OHSS), a condition that causes the ovaries to swell and become painful in about one-fourth of women who use injectable fertility drugs. (OHSS generally goes away after a week or so, but in severe cases it can cause rapid weight gain, abdominal pain, vomiting and shortness of breath.)

Nor do they mention that the surgery to remove the eggs can sometimes lead to complications, including cramping, bleeding and infection.

Egg donors also need to be told that the long-term risks of egg donation remain largely unknown. There is little long-term safety data on the infertility drugs commonly used to stimulate egg production, and there have been no follow-up studies on women who have donated their eggs.

This lack of safety information has led Our Bodies Ourselves and other women’s health advocates to call for a mandatory egg donor registry that will allow researchers to track the long-term health of women who have donated eggs. The Infertility Family Research Registry, a voluntary registry, is based at the Dartmouth Hitchcock Medical Center (see below for more more information).

In addition to physical risks, there are the possible psychological reactions to consider. While donors generally undergo both physical and psychological testing before the process begins, it is impossible for donors to predict with certainty the emotional impact of this procedure.

A 2008 study on egg donors’ experiences published in Fertility and Sterility found that almost one in five women reported lasting psychological effects, some positive and some negative, including “concern for and/or attachment to their eggs and/or potential offspring, concern that the donor or resultant child might want a relationship with them in the future” and “stress resulting from the donation process as a whole.”

“Women need to look at the risk involved very carefully, and pay attention to what they’re being told about risks, not just to what they’re being offered to do it,” Nancy Kenney, co-author of the study, told HealthDay News.

As a member of the target demographic, I want complete and balanced information. With the prospect of such a permanent and life-altering decision, I need to know the risks and rewards.

Other women do, too. Three women who donated their eggs have begun collecting personal stories from fellow donors with the hope of creating a self-advocacy group.

“Some of us consider egg donation to be the best thing we’ve ever done. Others do not feel that way at all. Whatever her stance, each donor’s story is welcome here,” they write in the mission statement at

I personally decided against donating my eggs. I sympathized with the overwhelming process my former co-worker and his partner were experiencing, but I told them that I personally did not feel that egg donation was the right choice for me.

I knew very little about egg donation back then, but I did know enough not to match his casual request, delivered via text, with a casual promise that might worry me for years to come.

Plus: OBOS is actively encouraging infertility clinics and centers across the country to promote awareness of the Infertility Family Research Registry based at the Dartmouth Hitchcock Medical Center. Learn more about ongoing studies.

Read more about issues and concerns related to egg donation, particularly from a nursing perspective, in this article from MCN, The American Journal of Maternal/Child Nursing.

A Boston College alumna, Ryann Summers served for two years as a bilingual program advocate at Voices Against Violence, providing counseling and advocacy services to Spanish-speaking survivors of domestic violence. As an undergraduate, she founded and facilitated a support group for student survivors of sexual assault. An avid yogi and writer, Ryann aims to explore women’s public health themes regularly for OBOS.

June 25, 2013

HIV/AIDS Policy and Prevention Cannot Succeed if Sex Workers Are Stigmatized

by Anna Forbes

In a ruling praised by organizations working on HIV/AIDS policy and prevention, the U.S. Supreme Court last week struck down a decade-old law forcing groups that receive government money in a global anti-AIDS program to embrace a policy opposing prostitution.

By a vote of 6-2, the Court ruled that the Anti-Prostitution Pledge in the President’s Emergency Plan for AIDS (PEPFAR) violated the First Amendment rights of U.S.-based organizations and was therefore unconstitutional.

PEPFAR funding is allocated to implement the 2003 United States Leadership Act against HIV and AIDS, Tuberculosis, and Malaria. While a major step forward in terms of overall investment in global health (and particularly in the HIV/AIDS response), the Act contains some insidious provisions, one of which is the Anti-Prostitution Pledge (APP), which states that “no funds, “may be used to provide assistance to any group or organization that does not have a policy explicitly opposing prostitution and sex trafficking,” and that “[N]o funds…may be used to promote, support, or advocate the legalization or practice of prostitution.”

The APP required, as a condition of funding, that all PEPFAR grantees write and adopt an explicit agency policy condemning sex work. Under this policy, grantees could not use any of their funding (including money received from other sources) on activities in any way related to sex workers’ rights. This resulted in the reduction or complete elimination of HIV prevention and treatment services for sex workers in numerous countries — including the de-funding of USAID-identified best practices programs.

Legal challenges to the constitutionality of the APP were brought by the Alliance for Open Society International (AOSI) and Pathfinders International in 2004; InterAction and the Global Health Council later joined the case.

Chief Justice John G. Roberts wrote in the majority opinion: “This case is not about the government’s ability to enlist the assistance of those with whom it already agrees. It is about compelling a grant recipient to adopt a particular belief as a condition of funding. By demanding that funding recipients adopt — as their own — the Government’s view on an issue of public concern, the condition by its very nature affects ‘protected conduct outside the scope of the federally funded program.’”

He added that although the government has a legitimate interest in controlling how PEPFAR funds are spent, it cannot require grantees to “pledge allegiance to the government’s policy of eradicating prostitution.”

The majority opinion was supported by Justices Samuel Alito, Stephen G. Breyer, Ruth Bader Ginsberg, Anthony Kennedy, and Sonia Sotomayor, with Justices Antonin Scalia and Clarence Thomas dissenting. Justice Elena Kagen, who had worked on the case while Solicitor General, recused herself.

It remains to be seen whether the Supreme Court decision will enable funded organizations based outside of the United States to abandon compliance with the APP without risk. The Court’s decision affirmed that U.S.-based agencies are protected under the Constitution but was not clear on whether agencies based outside of the United States, without the Constitution’s First Amendment purview, were similarly protected.

Despite this ambiguity, the decision is a clear win for those who uphold the human rights of sex workers and support access to the peer-based programming that has been shown to effectively reduce their vulnerability to HIV, as well as other health risks and human right violations.

Globally, sex workers are identified by UNAIDS and others as one the three “most at risk populations” (MARPS). In its 2011 report “Guidance for the Prevention of Sexually Transmitted Infections,” USAID wrote that countries receiving PEPFAR funding “should take steps to ensure that scale-up of prevention programs for MARPs is accompanied by appropriate protections of their rights, including the review of policies and regulations that criminalize or deter MARPs seeking services and training for service providers to reduce stigma and discrimination.”

Grantees’ ability to follow this guidance, however, was directly impeded by the APP requirement that grantees not only adopt an anti-prostitution policy but also distance themselves from any “organization that engages in activities inconsistent with the recipient’s opposition to prostitution and sex trafficking.”

Rather than risk funding loss, many grantees simply eliminated any sex worker-related services they had been providing. In a survey of staff in PEPFAR-recipient agencies, the Center for Health and Gender Equity (CHANGE) found that “19 of the 31 people interviewed in the field reported that they censored themselves or their organizations as a result of the pledge. Almost all contracting agencies reported that they have cleared their websites of references to sex workers or rights.”

In Bangladesh, for example, a drop-in center program recognized as a UNAIDS “best practices” model was defunded (losing 16 of its 20 centers) after the international NGO funding them decided to err on the side of caution in compliance with the APP. These drop-in centers provided homeless street-based sex workers with sanitation facilities, a place to sleep, temporary safety, condom counselling and promotion, and skills-building opportunities to facilitate transitioning out of sex work for those wishing to do so.

Hazera Bagum, director of the Bangladesh program, told CHANGE, “They came in and rested, educated themselves and talked to each other about effective HIV prevention … The monthly condom distribution rate used to be very high, but since the closings, there is less access, so sex workers are not using as many condoms. They distribute fewer every month.”

It is impossible for the U.S. government, or any government, to stigmatize people on one hand and simultaneously help them to reduce their HIV risk on the other. Gay men know the truth of this, as do women, as do people of color, as do sex workers, as do we all.

Now, at least, the Supreme Court has stopped Congress from insisting that its U.S.-based grantees attempt the impossible in this particular case. We have a long way to go, but this is progress.

Plus: For a broader view of how this fits into advocacy for sex workers rights, particularly with regard to HIV, read “Solidarity with Sex Workers: On the Agenda or Under the Bus?

An advocate, organizer and writer, Anna Forbes has worked on HIV/AIDS policy since 1985 and on women’s health and rights since 1977. Now an independent consultant with an international client base, her work centers around women, HIV, gender, health and rights.

May 16, 2013

Truth in Medicine: Vast Majority of Assisted Reproductive Technologies Fail

by Miriam Zoll

In an essay recently published in the Wall Street Journal, Sarah Elizabeth Richards, author of the new book “Motherhood Rescheduled,” encourages women to ward off age-related infertility by simply freezing their eggs — like she did.

Between the ages of 36 and 38, Richards spent $50,000 to freeze 70 eggs that she plans to thaw, fertilize, and insert into her uterus when she is 44 or 46.

“Egg freezing,” she said, “stopped the sadness that I was feeling at losing my chance to have the child I had dreamed about my entire life.” Still looking for a mate at almost 40, Richards says she now goes onto and has the confidence to tell men that she can “have kids whenever I want.”

While Richards’ decision appears to have provided her with a sense of hope and temporary emotional equilibrium, it may prove to be illusory. Sadly, as millions of women, including me, can attest, the vast majority of assisted reproductive technologies fail.

In 2012, of the 1.5 million treatments performed globally, 1.1 million failed: a 77 percent failure rate. In the United States, the overall failure rate was 68 percent. Once optimistic and hopeful about the promise of reproductive science, I endured four failed in vitro fertilization (IVF) cycles, one miscarriage, and two donor egg attempts in which both donors were diagnosed as being infertile.

But it is no wonder that Richards believes she will be able to bear children with her frozen eggs whenever she wants to. A $4 billion industry is driving the public discourse about often unproven discoveries through a lens that focuses attention on the minority of successes rather than the whole messy, complicated story.

Related: What’s Wrong With Fertility Clinics and Online Advertising

Growing up in a culture that reveres science, she has been bombarded with overly optimistic and one-sided media stories touting the miracles of creating babies in laboratories. The truth is, many women signing up for treatments do not realize until later the extent to which they are participating in a vast experiment, where evidence-based medicine has yet to establish a reasonable foothold.

The only current independent effort to track the health of all women going through treatments remains largely invisible to patients who might sign up to have their health — and that of their offspring — tracked over time.

The voluntary Infertility Family Research Registry is based at the Dartmouth Hitchcock Medical Center and is funded in part by the American Society for Reproductive Medicine (ASRM). To date, the vast majority of large fertility centers in the United States are not displaying the registry’s placard in their waiting rooms, greatly reducing the potential benefits such a long-term study would provide. [Ed note: Our Bodies Ourselves is actively encouraging infertility clinics and centers across the country to promote awareness of the Infertility Family Research Registry.]

Richards’ desire to protect her ability to bear a biological child is heartfelt, and her willingness to undergo egg freezing procedures that were considered experimental at the time speaks to her commitment — and her panic — to try anything to preserve that opportunity. But her statement that this decision was “the best investment” she ever made is premature, to say the least.

The general public knows virtually nothing about the failure and success rates of vitrification — a new flash-freezing technique that has been used to preserve the eggs of women younger than 30 who are facing life-threatening illnesses. While an estimated 1,000 babies have been born from this technology worldwide, there is virtually no data that tells us if these live births were the result of 3,000 or 10,000 trials.

We have no idea how many miscarriages or still births may have ensued, and there are few, if any, long-term infant health studies evaluating how flash freezing half of a child’s DNA might affect that child later in life. The one study Richards cites found that 900 babies exhibited no more risk of birth defects than babies conceived naturally by young mothers, but is one study really enough?

Apparently the ASRM believed it was proof enough for them to lift the “experimental” label from the still young procedure last fall. The ASRM Practice Committee said it was not yet ready to endorse widespread use of egg freezing for elective use. However, while randomized controlled studies were rare, the committee did find sufficient evidence to “demonstrate acceptable success rates in young, highly selected populations.”

Citing a lack of data on safety, efficacy, cost-effectiveness, and potential emotional risks, their report states, “Marketing this technology for the purpose of deferring childbearing may give women false hope and encourage them to delay childbearing. Patients who wish to pursue this technology should be carefully counseled.”

As would be expected, once the ASRM decision became public, their caution about women’s age and infant health was obscured and eventually obliterated by the dust kicked up by a stampede of panicked but hopeful 30- and 40-something women running to the nearest fertility clinic to have their eggs harvested for future use — for anywhere between $10,000 and $15,000 per harvest, or more.

One must wonder why the ASRM felt so compelled to provide a stamp of approval for a procedure still lacking in reliable safety and efficacy data. As legal scholars Debora Spar and Naomi Cahn have written in their books, “The Baby Business” and “Test Tube Babies,” respectively, in the context of an unregulated industry in the United States, it is virtually impossible to separate the medical and market forces at play when new techniques and procedures are advertised to potential clients.

The blurred boundaries between fertility clinics wanting to provide patients with safe, evidence-based procedures while also needing to generate business to meet their bottom lines puts that much more pressure on consumers to know what they are signing up for. But when evidence and information is scarce, biased, or non-existent, well-heeled consumers like Richards feel they have no choice but to close their eyes, write a check, and jump off that technological cliff called “hope.”

For Richards’ sake, I hope she succeeds. If not, she may well join the ranks of millions of men and women who, since the first IVF baby was born in Britain 35 years ago, have experienced involuntary biological childlessness as a result of delaying parenthood and relying on science for last-minute miracles.

Miriam Zoll is an award-winning writer and an international health and human rights advocate and educator. She is the author of “Cracked Open: Liberty, Fertility and the Pursuit of High Tech Babies” and is on the board of Our Bodies Ourselves. This article was originally published at RH Reality Check, and is reprinted with permission.

April 9, 2013

The Saga of Michael Klein: A Poem in Praise of a Pristine Perineum

by Allison Saran

Some of the world’s greatest medical discoveries never receive the attention they deserve. For Canadian physician Michael Klein, the attention came late, but it’s been growing ever since.

And thanks to one very humorous and talented fan, Klein’s work is immortalized in rhyme.

Dr. Jerry Kruse, the newly named executive associate dean of the School of Medicine at Southern Illinois University School of Medicine, where he had been chair of the department of Family and Community Medicine, has a flair for writing poetry and limericks – often under the pseudonym of Dr. Kreuss, which, yes, rhymes with “Seuss.”

Kruse’s talents were on full display last December at the annual meeting of the North American Primary Care Research Group. In the video above, he pays tribute to Klein, who is widely known for his landmark randomized control trial that showed routine episiotomies during childbirth (an incision on the perineum and the posterior vaginal wall during second stage of labor) cause an increase in the very complications they aim to prevent.

Klein believed that women given routine episiotomies experienced deeper perineal tears than women who were not given episiotomies. Though his study confirmed this, it was initially met with resistance within the medical community. In 1992, eight years after the original request for publication in an accredited journal, Klein’s findings were finally published.

Once released, the study caused a medical, and thus cultural, shift. Routine episiotomy was slowly abandoned by medical caregivers (“scissors were thrown to the floor with disdain,” notes Kruse in his poem) and with that, severe perineal injuries declined.

The results of Klein’s trial helped to decrease episiotomies not only in Canada, but throughout the world. In his opening remarks, Kruse credits Klein with “improving the lives of millions of women.”

In “The Saga of Michael Klein,” billed as the story of Klein’s “search for truth regarding episiotomy,” Kruse begins with a description of Klein’s holistic obstetric practice. Klein had advocated that women in labor should not be treated as if they have a disease, and that the first intervention during labor often leads to a cascade of other interventions, disrupting a natural process.

Here’s an excerpt:

Michael knew in his heart, way deep down inside
That obstetrical knowledge was not well applied.
“Technology’s great, for those who are ill,
But for those who are healthy it’s really no thrill
To be strapped down and poked, and scared stiff as a board.
This just isn’t right!” his fervent voice roared.

One thing more than others, did gnaw at his heart,
Made his blood boil, and stung like a dart.
He just couldn’t stand it, to see a long slice,
A cut, an epis – what a terrible vice,
Disruption of skin for no reason at all,
A snip with the scissors that starts very small
But rips and extends as the baby comes through
Tears into the sphincter and up the wazoo.
A third, then a fourth, oh my what a mess
“They must like to sew,” was his only guess.

So Michael rose up, and he raised his right hand
And opened his mouth, and took a firm stand:
“I’ll study this problem,” he said with a shout,
“And when I am finished there won’t be a doubt
That these cuts are no good—the whole world will see—
This idea’s a good one, they’ll have to agree.
I’ll start up a randomized, single-blind study
And I’ll work with Michel who’s my very good buddy
And we’ll put ole’ McGill right here on the map.
This study of perineal trauma’s a snap.

“The Saga of Michael Klein” concludes with a clear message: Never give up on your cause if the research is true and good can come of it.

Klein’s quest is one of many that healthcare providers and birth advocates have completed to make birth healthier and safer for all women. No matter if you are a doctor, midwife, nurse, pregnant woman, or just someone who cares about childbirth, “The Saga of Michael Klein” encourages you to laugh – and to carry the hope of bettering birth.

Ed. note: You can view the full poem in Family Medicine journal (October 2012), along with a complete bibliography.


Allison Saran is a senior at Brandeis University, majoring in anthropology and public health. She is a keen advocate for evidence-based birth and is excited to continue her studies at the Yale School of Nursing (CNM speciality). 

April 2, 2013

Lessons in Denial: A Student Perspective on High School Health Class

by Hanna Pennington 

Hanna PenningtonNo one ever really wants to take health class; it’s a required course, something people try to get out of the way so they aren’t that about-to-graduate senior who still has to take health. And that’s because at most high schools, health class doesn’t offer much — and everyone knows it.

I spent 80 minutes every other morning in health class during the second semester of my sophomore year, and when faced with an end-of-the-year survey about the class, I realized that the time had not been “spent,” but wasted.

We had not discussed birth control; condoms were the only form of contraception mentioned, and they came up only in the context of preventing STIs. A significant number of high school students are already taking hormonal birth control, like the pill, for a variety of reasons, whether to regulate hormone imbalances that can cause acne, reduce the pain of bad menstrual cramping, or because they are having sex, but the pros and cons of the pill were never addressed.

Through reading “Our Bodies, Ourselves” and other feminist websites and books, I have learned about many types of birth control. But this is because I care about this kind of thing. Most people don’t know what they should have been taught until it’s too late.

Another way in which my health class was insufficient, and also offensive, was that LGBTQ people were only mentioned in the context of HIV/AIDS, which we learned about by watching the film “And The Band Played On.” There was no other discussion.

As a bisexual person, I felt shortchanged. I sought out resources online, much the way I did with birth control, but again, this didn’t make up for the lack of class information. The majority of high school students are straight, but it is important to provide for those who aren’t, or who might be questioning. It is important to learn about how to have safe gay sex, not only safe straight sex; that information is a lot harder to find, unless you know where to look.

Related: A “Real” Sex Ed Story: A Teenager Recalls Lessons From “Our Whole Lives”

Another issue we did not discuss is consent. People need to learn not only that it’s OK to say no, but that enthusiastic consent is the key to happy, healthy sex (in fact, there’s a petition to make consent a mandatory part of sex-ed in public schools).

Abuse, both physical and sexual, should also be discussed. And resources should be provided for everything: where to get help if you’re being abused, where to purchase prescription contraception at a discount, where to get tested for STIs, and the number for the closest Planned Parenthood, for starters.

Finally, we never discussed masturbation. It is important for students to know that instead of it being something unholy or disgusting, masturbation is a perfectly healthy and important way to explore one’s own body and sexuality.

According to research by the Sexuality Information and Education Council of the United States (SIECUS), comprehensive sex education is more effective in preventing teen pregnancy than abstinence-only education. In her 2008 New Yorker article “Rex Sex, Blue Sex,” Margaret Talbot analyzed the differences in sexual patterns of teenagers living in different parts of the country, including the prevalence of teen pregnancies and STIs and use of contraception.

In conservative red states, where abstinence-only education is the norm and religion dictates much of the discourse, teenagers have sex earlier, usually without protection. In more liberal blue states, where there is often (but not always) more comprehensive sex education, teenagers wait longer to have sex and use protection more often when they do.

Although I live in blue-state New York, my health class was not all that. It is possible to acknowledge teenagers being sexual without encouraging it, but our teachers didn’t acknowledge any part of it. It is irresponsible to teach the class assuming that everyone is and will remain abstinent until marriage.

The 2009 documentary “Let’s Talk About Sex” examines young people’s attitudes toward and knowledge of sex and sexuality, comparing America’s largely insufficient programs to those of places like the Netherlands, where parents and children talk openly about sex (and which have lower rates of teen pregnancy and STIs).

Although I was briefly tempted to move overseas, there are comprehensive sex-ed curriculums in the United States, even if they can be hard to find.

One of my friends attends Rye Country Day School in Rye, N.Y. A program there encourages underclassmen to ask upperclassmen leaders whatever they want about sex, relationships, and so on. I was really impressed when I first heard about this, as it fosters an environment that removes shame from asking questions, which is how people get the answers they need.

At Manhattan Country School, there is a sex-ed curriculum, designed by Dr. Cydelle Berlin, that involves theater arts and peer education. Trained actors answer questions while in character. There is a box in every classroom in which students can leave anonymous questions.

The Unitarian Universalist Church, instead of strictly discouraging or not discussing sex as other churches often do, teaches a K-12 sex ed curriculum called “Our Whole Lives.” As stated on the website, the program “not only provides facts about anatomy and human development, but also helps participants clarify their values, build interpersonal skills, and understand the spiritual, emotional, and social aspects of sexuality.”

This curriculum is based on SIECUS’ “Guidelines for Comprehensive Sexuality Education,” which spans the same age range and includes such important topics as body image, gender identity, masturbation, abortion, and sexuality and society.

When reading this curriculum, I was pleasantly surprised how enlightened, inclusive, and accurate it was. But this should not be surprising; accurate language should be the norm.

It is bad enough that decisions about women’s health are made mostly by male politicians, but it is even more disheartening when you realize that some of them have no idea what they’re talking about. High school students aren’t the only ones who need basic education about reproduction, but it’s a good place to start.

Hanna Pennington is a high school senior in New York whose first foray into feminist activism was at age 7, when she wrote a letter to a children’s magazine protesting the omission of Sacagawea in an article about the Lewis and Clark Expedition.