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Unraveling the Global Epidemic of Misinformation about Fertility Treatments

Unraveling the Global Epidemic of Misinformation about Fertility Treatments

Picture of Miriam Zoll

In writing my book -- Cracked Open: Liberty, Fertility and the Pursuit of High-Tech Babies  -- I wanted to reveal the hidden side of treatments, and to caution women intent on birthing babies to avoid making the same irrevocable decisions so many educated, middle-class women in Gen-I.V.F. made when we delayed childbearing (see first blog post here). There’s a global epidemic of misinformation about the age when women’s fertility naturally declines and about the power of modern medicine to reverse this. Here’s what I learned through the process.

1. You Will Probably Be Physically and Emotionally Traumatized. I found that the side-effects of the drugs, the constant prodding and probing below my hips, and the repeated failures, miscarriage, and devastatingly dashed hopes brought me to the point where I sought treatment for post-traumatic stress disorder (P.T.S.D.).

A study by Allyson Bradow, Primary and Secondary Infertility and Post-Traumatic Stress Disorder, confirms that women who experience failed fertility treatments often exhibit symptoms of P.T.S.D. Close to 50 percent of 142 participants in Bradow’s study met the official criteria for the disorder; that’s about six times higher than its prevalence in the general population.

Those of us who bump into age-related infertility end up confronting two tragedies: the loss of our deep primal desire to birth a baby and the realization that we guzzled the Kool-Aid: we built our entire “women-can-finally-have-it-all” adult life on an illusion.

2. Your Sexuality Will No Longer Belong to You. In order to endure the physical and emotional strain of multiple I.V.F. cycles, you will eventually detach from your body and your sex drive. This is almost inevitable, as the doctors will control, through drugs and technology, what used to be controlled by Nature.

By the time I reached The Donor Egg Phase, sex equaled stress. It meant needles and Petri dishes, stirrups and vaginal probes. It was associated with disappointment and guilt and pain. Most nights I cried myself to sleep.

3. You Will Blame Yourself. In 2012, the European Society for Human Reproduction and Embryology reporte

d that the global assistent reproductive therapy (A.R.T.) failure rate was as high as 77 percent. In the U.S., treatments fail close to 60 percent of the time among women younger than 35, and 88 to 95 percent of the time among women older than 40. This glaring omission of information from most mainstream media results in women blaming themselves for failed cycles rather than understanding that this fragile science consistently misses its mark two-thirds of the time.

In my case, as cycle after cycle failed, I buried myself in a tomb of self-blame so disabling that I was unable to work for one full year. It was my fault my ovaries weren’t producing enough quality eggs. It was my fault we waited too long. It was my fault we had a miscarriage. I was an expert when it came to contraception, but I was embarrassed about my ignorance regarding reproduction and angry with myself for how blindly I entrusted doctors to work their magic in a laboratory.

4. The Absence of the Sacred Will Deplete You. Fertility clinics and their staff are focused on manufacturing embryos, not on counseling patients compassionately after miscarriages, stillbirths and negative pregnancy tests. I often wondered what the doctors and nurses thought about me, the human being, as I lay on the gurney, and when I eagerly signed up for another cycle only days after my miscarriage. Did they feel sorry for my desperation, which kept them employed? Hooked into stirrups, did I have a face, a husband and a life, or was I just another older woman trying to have a kid?

A few months after our second donor was diagnosed as being infertile, we finally, for the first time, sat in a room with other couples in the same situation. A minister’s wife told the tale of how she’d adopted four children whose mother could no longer care for them.

Only minutes into her story, the dam inside of me broke loose and a river of tears began streaming down my face. This was the first occasion since we’d begun the arduous baby-making process that we were communing with people who actually talked about the sacredness of the path toward parenthood. Never once during treatments had clinic staff even mentioned the beauty or spirituality of creating and stewarding new life. 

5. Treatments Involve Health Risks. In a branch of medicine that is still very much experimental, I injected into my body whatever drugs the doctors thought might help me become pregnant. I am an educated woman, a researcher and writer by trade, a feminist, and yet I became an obedient guinea pig.

When I finally stopped treatments and was invited to join the board of Our Bodies Ourselves, I learned that there is scant evidence-based research about the long-term effects of treatments on women’s and infants’ health. Existing data does show an increased risk between certain fertility interventions and breast, ovarian and endometrial cancers, among other side effects, and a 26 percent increased risk of birth defects in I.V.F. babies. The common practice of implanting multiple embryos is known to pose serious health risks to mothers and infants, including pre-term delivery, low birth weights and costly hospitalizations.

The effect of treatments on egg donors has been even less studied, yet we do know that side effects can include blood clotting, infertility, and ovarian hyper-stimulation syndrome, and in some rare instances, death. Potent drug regimens can create as many as 30 to 60 eggs in one cycle, as opposed to the solo egg a woman naturally produces during her period. (You can learn more in the film Eggsploitation and from the group We Are Egg Donors.)

On the positive side, there is now the Infertility Family Research Registry (ifrr-registry.org) that invites women going through A.R.T. to submit information about their health and that of any offspring. Of the roughly 500 clinics in the U.S., however, fewer than 100 have signed up to promote it.

6. Treatments Costs a Fortune. Be Prepared to Confront Your Privilege. One average I.V.F. cycle in the United States costs between $12K and $15K; a donor-egg cycle, $30K; and surrogacy anywhere from $75K to $150K. Around the globe, the greatest cause of infertility is untreated sexually transmitted diseases; these hit poor women the hardest. Needless to say, fertility treatments are largely unavailable to them.

Only 15 U.S. states offer insurance policies that cover fertility procedures, compared to Britain, Israel and many countries in Europe that subsidize some citizens’ fertility treatments. In Sweden, France and Italy, single women, and lesbians and gay men, are often barred from accessing them at all.

7. Fertility Clinics Are Big Business. Most clinic staff wear two incompatible hats: a medical one and a business one, so this means their advice might include steering you towards trying new technologies and drugs. Our reproductive endocrinologist told us honestly that our chances of I.V.F. success were low, but he also said, “It only takes one good egg to make a baby.” Michael and I were awash in yearning and denial; the doctor knew that. “New techniques and protocols are constantly being developed,” he said. “You just never know what can happen.”

The world’s first fertility company, Virtus Health, went public this year to the tune of almost half a billion dollars. Its CEO is quelling investors’ fears that improvements in A.R.T. might mean fewer cycles for clients. Uh-oh — dwindling revenues.

8. Fertility Clinics Are a “Wild West.” There is only one piece of U.S. federal legislation, loosely enforced, that requires clinics to self-report their annual success rates: the 1992 Fertility Clinic Success Rate and Certification Act. Apart from this, the industry operates below the public radar.

Activities that are stunningly unregulated include: implanting multiple embryos that may increase rates of success but also endanger women’s and infants’ health; engineering and selling anonymous embryos in the marketplace; prescribing off-label drugs that have not been approved by the F.D.A. for fertility use; marketing donor embryos or donor egg treatments to post-menopausal women; and offering expensive procedures –– such as egg freezing — that have no proven track record in efficacy or safety.  

9. Your Treatment Options May Exploit Poor Women. Patients wrestling with the pain of infertility and considering options like surrogacy and egg donation need to understand and connect the dots between their treatment choices and these women’s lives. Many surrogates, in India and elsewhere, are illiterate, extremely poor, and often not informed about what they’ve consented to. They can be separated from their children for up to a year, relegated to “surrogacy dormitories,” and, if their pregnancy fails, compensation and follow-up health care may be withheld. As health consumers, patients can plan an important role promoting greater health and human rights protections for all parties involved in reproductive technology treatments.

Commercial surrogacy and egg vending are booming businesses. As someone who has studied the link between poverty and gender, I would much rather see women and girls acquire economic security through better access to educational, constitutional human rights protections, and sustainable employment opportunities, not by a singular focus on their gonads and wombs.

10. You Will Dislike Yourself. Entering the world of A.R.T. will challenge you to reassess much of what you thought you knew about yourself. Long-held beliefs about right and wrong begin to flake off your psyche like old paint on a windblown house. Moral dilemmas about eugenics and cloning invade your dreams.

For me, deciding to use donor eggs was much more difficult than choosing I.V.F. I was averse to how unnatural it was, and I felt deep shame for my conspicuous conception, paying another woman to risk her health and possibly deplete her own egg reserves on my behalf. How and why do these young women decide to sell their eggs to someone like me? How does a donor agency determine that one woman’s eggs are worth $8,000, but another’s only $5,000? Blonde, svelte donors seem to get paid more than brunette, overweight ones. And Caucasian, Asian and African-American eggs carry very different price tags. Ivy League egg donors with high S.A.T. scores and 36-24-26 body measurements have been paid as much as $100,000 for their eggs.

While searching for a donor, Michael and I were aghast at how judgmental we became. This one’s eyes are too close together. I don’t like her teeth. She looks bi-polar. She looks uneducated.

Like any protective parent, you want to be discriminating when choosing the genetic code and physical traits of someone whose egg will form half the D.N.A. structure of your potential offspring; that’s understandable. Still, it did not sit well. And even though we are now, through adoption, the proud and grateful parents of the most delicious little four-year-old ever, our A.R.T. ordeal may have scarred us for life.

Image by jasoneppink via Flickr

A version of this post originally ran in Lilith magazine and has been used with permission.

Miriam Zoll is an award-winning writer and author of Cracked Open: Liberty, Fertility and the Pursuit of High-Tech Babies, founding co-producer of the Ms. Foundation for Women’s original “Take Our Daughters To Work Day,” and a board  member of Our Bodies Ourselves and Voice Male Magazine.

Comments

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Were you really expecting to find sacredness, beauty and spirituality in an IVF clinic? No wonder you were disappointed. You would have been just as disappointed if you'd sought medical treatment for any other issue--cancer, heart disease, etc. Meeting the needs of our souls and hearts is what support groups, therapists and friends are for. It would be wonderful if we could get the needs of our hearts and souls met in the same places that treat the afflictions of the body, but apart from the occasional unusually compassionate doctor (and I've met a couple in IVF clinics, as well as in oncology practices and a few other places), that doesn't happen. That's not how hospitals or health clinics are. Is it really fair to blame "the infertility industry" for that, when the same is true of all the medical care we get?

It also feels to me like you're looking for things in the wrong places--or blaming fertility clinics for problems that exist in ALL medical care in this country--when you talk, towards the end, about the different fees that donors may be paid. How does one hospital decide to charge $100k for a knee operation, when the hospital across town offers the same operation for only $65k? How do you end up paying $5k for an operation when you have one kind of insurance, but the same operation at the same hospital costs $10k with a different kind of insurance? That's how medical care is in this country. It's not unique to infertility, and it doesn't prove that the infertility industry is somehow bad--though it sure does raise questions about our health care system in general.

You also venture into misleading territory when you state that "Caucasian, Asian and African-American eggs carry very different price tags." I suspect most people would assume you meant that Caucasian eggs cost the most, and so on down the line, and therefore that the market is racist, i.e. bad. If you're going to mention race, don't you owe it to readers to point out that there are far FEWER Asian and African-American (and Jewish) egg donors than Caucasian ones? There are not enough to provide eggs for all the Asian, African-American (and other black) and Jewish women who are looking for donors here. In the US we have not only US residents needing eggs, we also get women from China, Japan, Jamaica, etc. flying in to use our excellent clinics, as well as Jewish women from countries where the waitlist for Jewish donors is absurdly long. That's why Asian, African-American and Jewish egg donors can generally charge more for their eggs than Caucasian women.

And finally, you're beating up on yourself way too much. For instance, before you guilt-trip yourself about how you might pay a woman to "possibly deplete her own egg reserves" on your behalf, ask a doctor how this works--you'll find that doing IVF, for you or herself, does not deplete egg reserves. Here's why: because every month a woman will produce X number of antral follicles, one (or occasionally two) of which will actually develop into mature eggs; the other follicles that start growing that month will then wither away and disappear, their potential eggs gone forever. With IVF, the drugs simply cause ALL of that month's antral follicles to try and develop into eggs. What you're using up is THAT MONTH'S supply of potential eggs. You're not using up eggs that would have otherwise been available in later cycles.

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Daleth:

Thank you for your comments about my article in which I raise important concerns about infertility treatments and their link to patient/consumer mental health, human rights, and ethics, including gender, race and class in the context of for-profit reproductive medicine.

With regard to your first point: Given what I know now as a former infertility patient in recovery, I do believe that clinics should provide much more patient education and counseling than most currently offer. And yes, given that couples are trying to create their families, to bring new life into the world, you bet there should be respect for the sacred aspect of that endeavor built into the services offered at clinics.

The fact that most in vitro fertilization cycles fail—80% global failure rate; 71% U.S. failure rate – means that the majority of couples going through treatments are experiencing a range of devastating emotional losses. These often includes numerous negative pregnancy tests, multiple miscarriages and sometimes pre-term birth at 25 or 27 weeks and neonatal death. Add to this financial stress. As I am sure you would agree, these kinds of losses cause severe, debilitating and often long-lasting emotional damage to individuals and to the couple as a whole. Sometimes it takes years to recover and many marriages are not strong enough to endure the stresses. It makes sense that clinics that really cared about their patients/consumers would integrate specialized counseling services on site or externally into the costly fees they already charge.

As for your second point about the various price tags being applied to egg donors, you are right. We live in a country with a market-based health care system. You say the infertility industry is just part of the pack—they are offering competitive prices, whether they are selling hormone cocktails, IVF cycles, donor eggs or surrogates. Well, when it comes to third-party reproduction and assigning a monetary value to human tissue and women’s reproductive labor, I think we need to proceed with caution. Once you understand the lucrative commercial end of reproductive technology services, it becomes impossible to untangle the race and class issues that drive the demand for human eggs, including for stem cell research.

Most couple’s utilizing services like donor egg cycles are Caucasian and most pay out of pocket because insurance policies don't provide coverage. If the marketplace supports a couple paying $100K or more for someone’s eggs, do we as a nation agree to let the marketplace reign? Or do we begin to question what it really means to assign a monetary value to human tissue? We do not condone the selling of organs like kidneys and livers. Why do we condone the sale of eggs? The answer: because without the economic incentive, the poor women who "donate" would not donate. The men who "donate" sperm would not donate. The industry needs to place a monetary value on the product in order to keep it stocked on the shelves. It is that simple.

You are correct when you say there is a shortage of ethnic donors. As I said above, most who choose to contract a donor are Caucasian and they want an egg donor who looks like them. Perhaps if more Asians and African-Americans began to utilize these procedures the supply would rise. That aside, it is important to remember that most egg donors are young and many are not aware of the health and emotional risks involved in the egg donation process. Unfortunately, I have met several egg donors who have become infertile themselves after donating.

In a natural menstrual cycle, women drop one egg per month. During a stimulated cycle, it is not uncommon for donors to produce 15, 30, 45 or even 60 eggs. In Israel several years ago, a doctor stimulated a patient so much that she produced 180 eggs in one cycle. Ovarian Hyper Stimulation Syndrome is not an uncommon experience for many egg donors. The ovaries swell from the size of walnuts to the size of a grapefruit – or larger. Fluid collects in the abdomen and hospitalization is sometimes required. A donor in Florida suffered a stroke after 45 of her eggs were retrieved and she is now engaged in a law suit against the doctor. We need more short and long term research to determine the overall health effects of these drugs and procedures.

Thank you.

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Kudos to Miriam for sharing opening and honestly her experience. Wouldn't it be refreshing if all who commented showed the same courage of conviction and used their real names? I echo the sentiments that Miriam lays out here and added a few more in a recent blog post: http://blog.silentsorority.com/generation-v-f-shares-lessons-learned/

As for the previous anonymous commenter who asked, "Is it really fair to blame the infertility industry for not meeting the needs of our hearts and souls in the same places that treat the afflictions of the body, when the same is true of all the medical care we get?"

Fertility clinics that are in the business of selling services to create new life should absolutely be held to a higher standard. In fact they have a thing or two to learn about treating their patients as whole individuals, not body parts to be moved callously through a lab environment. I engaged four different fertility clinics and hospitals when I sought help for a complex, unexplained infertility diagnosis. The treatments were physically, emotionally and financially draining (all out of pocket, non-insurance covered). Looking back I am appalled by the lack of humanity exhibited. I'd like to introduce them to the staff at an urgent care clinic and allergy shot office, both of which I visited earlier this year. In those cases where the medical staff were tasked with setting a broken ankle (for my husband) and tending to a sinus infection (for me), we got far better overall care and attention -- and follow up than we ever experienced with the for-profit fertility staff.

All patients deserve respect and care -- particularly when there are life and death issues associated with pregnancy loss. Sadly this callous treatment is not only restricted to the U.S., a British author faced similarly bad behavior as she laid out in her book. She recently posted a call for better care on her blog: http://thepursuitofmotherhood.wordpress.com/2014/02/16/we-all-have-our-s...

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