Silent Sorority

Infertility Survivors Finally Heard

October 21, 2013

The Infertility Stories No One Advertises

Editor’s Note: Updates (10/26) included below from BBC Health.

It’s been more than a month since the op-ed prompted by failed infertility treatments, “Selling the Fertility Fantasy,” ran in The New York Times. Infertility stories that don’t end in a baby don’t grab headlines.

But this one did. It reverberated across the infertility blogosphere to the bioethics and media communities, as well as the cancer community. For many who had never stepped foot in a reproductive endocrinology practice the 70% failure rate per ART cycle from the latest CDC report and the 77% failure rate per ART cycle recorded by the European Society of Human Reproduction and Embryology was a surprise. They had only seen headlines about fertility treatment advances and infertility narratives involving a bouncing, healthy baby.

The op-ed struck a nerve most especially with the nearly $9 billion industry (updated: projected to be $27B for IVF by 2020) that stands to profit most from selling services to weary, vulnerable consumers and those recruiting nubile, fertile young women to be egg donor/vendors.

Rather than admit that it is industry practice to cherry-pick their most likely to succeed candidates and market their successful pregnancy rates, along with available donor profiles most likely to attract new consumers to pay the large sums charged, they chose instead to obfuscate and protest about the way the information was portrayed, best exemplified by the American Society for Reproductive Medicine (ASRM) spokesman who acknowledged in an NPR marketplace interview that the numbers shared in the op-ed were correct, but he didn’t like where we placed the emphasis:

‘Some of it is just how you want to present the data,’ Tipton says. ‘A thirty percent success rate and a seventy percent failure rate is the same number.’

As if there’s more truth in arguing the cup is one-quarter full rather than three-quarters empty.

Then there was the program director at the American Fertility Association. Rather than engage in a meaningful dialogue about the limits of medicine and the need for standardized, monitored protocols and better reporting practices, she elected to attack the authors (a common tactic in the ugly politics of our day.) Instead of arguing the credibility of the message we were dismissed as “bitter” and our op-ed nothing more than:

a sad story of two women who did not get the thing they wanted most in life and were unable to find grace in the world they created for themselves.

You have to wonder who exactly the AFA program director is more concerned about: vulnerable individuals asked to fork over $15,000+ for risky procedures with low success rates and cash-poor young women (largely unaware of the risks to their own reproductive fertility) recruited for their eggs — both groups in need of unbiased, comprehensive information — or the industry that stands to profit by downplaying the facts.

In the truly ironic category, there was the response of Terri Davidson who has made a living marketing reproductive medicine. Davidson, who once represented a now-convicted felon — Theresa Erickson who pleaded guilty to being the mastermind behind a baby selling ring — felt perfectly at ease doling out a tongue lashing.

(You can read more about Erickson and the unscrupulous practices of other fertility treatment brokers and clinics in Charlotte Allen’s piece, “Womb for Rent.”)

Those outside the fertility industry looked at the copy objectively and gleaned the larger message we were sending. Jonathan Coppage writes, “Zoll and Tsigdinos are the furthest thing from ideological opponents of in vitro fertilization or other ARTs, but they have learned from their own painful experience that the multi-billion dollar industry that has sprung up around the painfully powerful desire to bear children can blur the divide between doctors practicing medicine and industry professionals making sales. They acknowledge the successes and celebrate them, but explain that:

we rarely hear from the other side, former patients who, in refusing to give up, endured addictive, debilitating and traumatizing cycles. Those contemplating treatments have a right to know about the health risks, ethical concerns, broken marriages and, for many, deep depression often associated with failed treatments.

And this is not the first time there’s been a call for a more rigorous look at the practices of the unregulated fertility industry. Former ASRM ethics committee member George Annas in a PBS Frontline interview a few years ago shared this perspective:

you have a variety of highly professional, in most cases, individuals out there pitching their wares, their success rates, their new technologies, their cutting edge technology to this highly susceptible group of infertile couples who are almost willing to try anything, and almost pay any price to get a baby.

He goes on to make clear:

There hasn’t been what you have in cancer, for example, or other major diseases where you have long periods of people doing experimentation, looking at protocol, developing protocols. Finally, finding something that works and then standardizing it, so other physicians can follow it. Nothing like that in assisted reproduction. Basically, it’s individual. It’s developing their own techniques and then marketing them.

Walk into any fertility clinic and you’ll most assuredly see faces of smiling, cherubic babies often pictured with their euphoric parents, relieved, but without the asterisk.

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(* as in: they now possess much smaller bank accounts and we’re not sure what the long-term risks are to mother or infant as a result of treatment since longitudinal studies do not exist. And, in the case of donor eggs, there are no details on the physical or mental health of the young women recruited and whose eggs were harvested for profit.)

Even with a credible, caring reproductive endocrinology team, there is nothing altruistic about the sky-high cost of treatment, which eliminates some high potential candidates from even considering a round of IVF with their own gametes.

There was also a clear divide in the op-ed response between those who were actively in treatment or had succeeded with treatment and those who did not or could not afford it made clear by this blog commenter.

Success and failure rate debates and treatment costs aside, what’s particularly scary is the lack of oversight and rigorous scientific studies, which present real health concerns. Bioethicist George Annas further points out:

The idea that there can be–with 200 clinics–200 different standards is ludicrous. There should be one standard. If you’re going to deviate from that standard, you should have to explain it the way you have to do in every other area of medicine.

One major organization with the power to institute change, the ASRM, held its annual meeting last week in Boston. The last of the various industry practitioners packed boxes, booths and suitcases and departed Friday afternoon following five days of meetings with only one panel that employed the term ethics: “The Medical, Psychological and Ethical Considerations of Egg Freezing.” A session titled “The Integration of Mental Health Experts in the REI Practice” begs the question: is the integration of mental and physical health only now being considered after 30+ years of REI practice?

The routine experience of this blog’s readers is that mental health considerations at clinics are usually an afterthought. For those no longer writing checks for treatment or receiving checks for providing eggs, there’s nowhere to turn. They’re abandoned.

The only discussion about egg donor health and well-being was a weirdly unhuman-centric session titled: “What’s Good for the Goose Should Also be Good for the Gander: A Medical and Psychological Discussion of Differences in Donor Oocyte and Donor Sperm Screening, Compensation, and Matching.”

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In contrast, on Saturday night I attended a very human-centric event involving women who had been lured a few years earlier by advertisements on college campus to sell their eggs. Among the featured speakers was Single Infertile Female blogger Leah Campbell. For Campbell, the endometriosis condition, of which she was unaware, was aggravated by hormones provided during her egg donation cycle. The cycle led to multiple egg extractions and multiple follow-up surgeries to repair the damage. The other former donor, Raquel Cool, suffered from Ovarian Hyper Stimulation Syndrome (OHSS). They were joined by author Miriam Zoll, who at one time considered donor eggs and learned that two of the women offered up to her by fertility clinics were, in fact, infertile.

Together they contributed a dramatic reading, interweaving their stories and providing never-before-heard narratives about the health risks, bioethical concerns and emotional trauma associated with egg donation. It’s part of an ongoing effort aimed at awareness building led by Raquel, co-founder of We Are Egg Donors, an international support network for egg providers. She points out that:

In the U.S., it’s easier to open a human egg brokerage company than it is to start a food truck business.

At the end of the evening I had a chance to compare notes with Miriam, Raquel, and Leah. We all agreed that while assisted reproductive technologies have led to five million births over 35 years it’s long past time to hold accountable an unregulated fertility industry and brokers who often seem driven more by financial interests and technological optimism than genuine medical concern for women (and men) who engage in treatments and surgeries and the babies conceived using ART.

Ours are cautionary tales that can inform a new generation of young women and men who may one day confront infertility. It’s important that they grow up knowing the associated health risks, biological and medical limitations and ethics involved. Ours are very real narratives that don’t lend themselves to glossy marketing campaigns, but in relating the full spectrum of outcomes we will allow future generations to make informed decisions early — not in a place of panic or magical thinking. The primary concerns need to be safety and healthy well-being (both physical and mental for all participating parties) not simply selling the next advanced treatment for profit.

Has your opinion of the fertility industry changed over the years? If so, how?

BBC Health has a story on the chair of the UK’s HFEA (Human Fertilisation and Emryology Authority), Professor Lisa Jardine, calling for better education around the pros and cons of fertility treatment. The UK is setting a leadership example, one that the U.S. industry should follow — not dodge. Among her refreshing recommendations:

Couples considering IVF, she warns, must be made aware of the heartache of unsuccessful treatment. The world of IVF is a market, a market in hope. Those who enter it deserve to be fully informed of its potential to deliver grief and a sense of failure, as well as success. 

HFEA.RatesAdding to the challenge is media’s fixation with birth stories. She states: “There is an extraordinarily high level of coverage of any story involving IVF in the media – celebrity births, tales of miracle babies after years of trying…This is a sector that trades in hope, and the papers and women’s magazines are full of encouragement.”

This is all the more reason, I applaud The New York Times  (and the BBC News Magazine) for publishing (and including a link to) our op-ed calling for  objective, independent advice from health care and mental health professionals focused on the person’s well-being instead of the profit.

Kudos, too, to the HFEA for making facts known in the UK (see IVF chart).


Bioethics, News Reports and Studies, Pop Culture, Tapestry of Voices 15 Replies to “The Infertility Stories No One Advertises”
Pamela Tsigdinos
Pamela Tsigdinos
Writer, blogger and, oh, yeah, infertility survivor. My memoir, Silent Sorority, tells the whole story. There's a movie in there somewhere. Given the quirkiness needed to relate it all I'm thinking Jennifer Lawrence would be a good fit.


15 thoughts on “The Infertility Stories No One Advertises

    Author’s gravatar

    Thank you for being the voice of people like me. I know that infertility treatments don’t always work. And, despite all the medical advances, sometimes the doctor can’t figure out what is wrong and you just get diagnosed with “unexplained infertility” like me. I wish more people knew this and hope your message is proclaimed loudly! I’ll add it to Twitter.

    Author’s gravatar

    Up until a year ago, I was pretty clueless on infertility. I didn’t have much of an opinion though I probably judged more than I do now.

    As you pointed out I think the most important thing the fertility industry can do is be honest with patients on the risks associated with treatments and that there are no guarantees. If they can do that and leave the decision in the hands of the patients then they have done their job. The first RE my wife and I saw was very vague and seemed to want to push us into pursuing treatments right away. However, the second RE we saw was honest telling us what the possibilities were and that nothing was certain either way. Also, the urologist I saw was honest and although offered treatment did not recommend it. In his words “I love performing surgery so if you want to I’ll perform it but I wouldn’t recommend it for you”.

    The worst thing a doctor can do is give a false sense of hope to people that are vulnerable. That’s what needs to change but I’m not sure how you enforce doctors to do what’s right.

      Author’s gravatar

      Hi Greg,
      I just updated the post with a BBC Health story that highlights Professor Lisa Jardine, the UK’s chair of the HFEA (Human Fertilisation and Emryology Authority), who calls for better education around the pros and cons of fertility treatment. The UK is setting a leadership example, one that the U.S. industry should follow — not dodge. Jardine notes:

      “Couples considering IVF, she warns, must be made aware of the heartache of unsuccessful treatment. The world of IVF is a market, a market in hope. Those who enter it deserve to be fully informed of its potential to deliver grief and a sense of failure, as well as success.”

    Author’s gravatar

    I can so relate. I just want to say thank you so much for being an advocate and like Gail said, “being the voice of people like me”. I’m not quite ready to go public, things are too raw. But your posts, your book, and your blog have helped me more than I can ever say. Please keep up the great work Pamela.

      Author’s gravatar

      Glad, Carolyn, that you’ve found support and a sense of community! It’s hearing from women and men like you that keeps me pushing forward.

    Author’s gravatar

    This piece is disturbing, infuriating, and ultimately so powerful. I’m not sure yet which part left me most stunned, but I think it may have been the AFA program director effectively saying, “tough titty, bitter broads, you brought this on yourself.” Imagining the American Cancer Society telling someone who’d been through unsuccessful chemotherapy, that they should have more grace and should have eaten more vegetables. Absolutely stunning.

    I was also disturbed by your story of meeting the egg donors. This really struck a chord with me as these were the women I thought about when that option was presented to me.

    Thank you again for having the courage to speak out for us in the infertility community. You truly are a force to be reckoned with.

    Lisa xx

      Author’s gravatar

      Thanks, Lisa. It’s crucial to get *all* the information into the hands of those engaging in any fertility treatment, and to continue to call for longitudinal health studies for all involved. George Annas called the fertility industry the “wild west” practice. We wouldn’t accept that mentality for other medical procedures. He also pointed out that it took an act of Congress a few years ago to get the industry to keep national statistics on comparative success rates among clinics. Clearly there was information they didn’t want easily available.

    Author’s gravatar

    There are so many comments that I want to make about this post. First off, I am so sorry that Pamela and Miriam were attacked by others on account of this article. I will forever hold in my heart your stories and seeing you both on that NY stage. If anyone has found grace through this process, it is you ladies. I don’t think either of you were blaming anyone for treatments not working. Both women have bravely come forward as the faces of the rest of us who failed treatments and remain hidden. I have definitely faced those cycling who openly state that they cannot think of being CFNBC and that it is too scary. I am warmly welcomed back by forums when I say I want to cycle again. When I’ve left to say I was done with treatment, I could definitely feel their horror that I would walk away.
    As for the dismal stats, I do believe it depends on your diagnosis. For me, I’d say 95% of the women I’ve come in contact with in the past 3.5 year of TTC have gotten their baby. For some, it was multiple rounds of IVF or use of donor eggs. Generally speaking, they were women under 40. Of course they spent an exorbitant amount of money and/or lived in states with insurance mandates. I have to imagine that the rest of the women I’ve met who are paying OOP are from upper middle class income levels or higher when they are cycling many times or using a gestational carrier. But having access to treatment doesn’t guarantee success. I live in a mandate state and have been “fortunate” to try IVF 6 times (4 OE IVF and 2 DE IVF) . No baby though. That’s where I get concerned about people wanting standard protocols. I never would have made it to an ER if it was standardized. My FSH was in the high 20s in my 30s. I needed someone to think outside the box as standard protocols did not work for me. I was kicked out of various practices as they did not want to cycle me. Perhaps it is because there is no lack of patients with insurance in MA so the clinics did not need my business? But I can say that no doctor gave me false hope. They all told me my chances were low. I did it anyway. Of course, the naïve new patient always thinks they are “different” and will be one to find success. Multiple cycles later, my rose colored glasses are off.
    As for donor eggs, I have a lot to say. I was shocked that donor egg agencies do not medically test the donors. They just find them, make you pay a lot of money and then if your RE says you can’t use them, you are still stuck paying that agency (and can pick a new donor… what if you don’t like anyone else they have??) I do think the donor egg business needs more regulations. Since I did not like the way agencies operated, I tried to find a clinic with a donor pool. Again, I was naïve as to how different clinics screen (or don’t screen donors). I went to a clinic with lower than national average success rates as the price was right. The old adage of you get what you pay for rang true. They overstimmed my first donor and the poor girl ended up in the hospital with severe OHSS. My second attempt didn’t go well either. The clinic hid the fact that I was a 3rd recipient from me (I thought I was a 2nd recipient). The donor I picked sent an email to the clinic while she was stimming, saying she was backing out. I felt like Carrie Bradshaw being dumped by a post-it! The clinic offered me a substitute donor since I was already on my meds and obviously very upset by the donor bailing out. The clinic admitted after the fact that they hid my 3rd place status from me as they knew I would not have proceeded with the cycle. I’m sure the first 2 recipients have no idea I was added to the cycle the day before the donor’s ER and don’t know that they got less eggs than they would have if I was not added at the last minute. The couple who did not get pregnant would probably be VERY upset with this information. To me, this was greed by the clinic as they lost money by my original donor backing out and now, they collected fees from 3 recipients for one set of eggs. Problem solved, right? This never should have been allowed to happen. So, yes, my opinion of the fertility industry has definitely changed due to my experiences.

      Author’s gravatar

      Thank you Mrs. McIrish for sharing your story. It’s one I often think about – the IPs on the other side. Do they know what’s going on with the donor? Did they wish to meet the donor but were misled, manipulated by the clinic/agency?
      – S

      Author’s gravatar

      Thanks Mrs. McIrish for sharing your story. The more we learn about the fertility industry’s practices (or lack thereof), the more questions get raised.

    Author’s gravatar

    I thought I had commented on this before, guess not. ;) Since your NYT op ed, I have seen a number of pieces in the media echoing the themes that you & Miriam brought up, many of them referencing your article. You have definitely struck a chord here; it’s obviously a message that is resonating with a lot of people, so keep up the excellent work!

    Infertility treatments have been a blessing for many people, and there are advancements & improvements in protocols all the time. I think we tend to forget that they really haven’t been around that long — even just 10+ years ago, when I was doing IUIs, donor eggs were not that common (one reason why I hesitated to go down that road). We have come an amazing distance in a very short period of time; at the same time, there is still so much we don’t know about fertility and the effects these treatments have on both parents & children. We can be grateful for the technology that has helped so many people fulfill their dream of parenthood, but that doesn’t mean we shouldn’t be asking some hard questions (including how many people don’t wind up with a baby and what happens to them).

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