Silent Sorority

Infertility Survivors Finally Heard

June 5, 2014

With ‘Fertility’ Businesses Booming, Is Now the Time to Go Long on Kleenex?

It’s no secret that I was unable to get pregnant during my prime child-bearing years.

What I possess today (and didn’t have when I was 29 and just embarking on what became a prolonged medical mystery tour) is a healthy skepticism mixed with a dose of pragmatism.

My inability to succeed with Mother Nature, and my direct experience with the deep heartbreak that accompanied promising but failed reproductive medicine makes me highly sympathetic to the plight of infertile couples and those who want to expand their families. I remember very clearly how badly I wanted to believe that the people in the white coats had all the answers for a healthy pregnancy and delivery.

If only.

That was 10 years ago when the “fertility” business was a mere $3 billion dollar industry.

When I look back on the younger me — scared and yes, willing to buy into the dream — I see I was a perfect target.  An easy mark. What began as a hopeful albeit tentative dance with multiple “best-in-class” clinics complete with invasive diagnostics and reassurances led to multiple surgeries, pharmaceuticals, procedures, Chinese herbs, more western pharmaceuticals, acupuncture and, finally, a few rounds of ICSI IVF and FETs.  Each step of the way I wrote increasingly larger checks and my credit card got a major work out.

More than a decade later  — after many gut-wracking sobbing fits and prolonged low-grade depression punctuated with the body blows that accompany the calls from the clinic saying that the alpha pregnancies didn’t make it to beta  — slowly, slowly the realization took hold that a successful childbirth would forever be out of reach. From what I know of my blog readers, my experience was far from unusual.

‘Fertility’ Services: IVF Market Projected to Reach $21B+ in 2020

Now that I’ve gained some distance from my days of treatment I wonder about the next generation … the women and men now in their 30s and 40s who have bought into the notion that the 35-year-old “fertility” industry has learned a thing or two over the years of mostly failed cycles.*

Reproductive medicine has transformed from a ‘medical’ intervention appropriate for a small segment of the population into a commodity-based business, with some clinics (VIRTUS Health) in Australia going public to the tune of half a billion dollars. Monash IVF will become the second IVF company to go public.

 It’s described as “a business with good growth prospects and a high-margin business,” by Acorn Capital portfolio manager Paul Palumbo who added. “Monash probably does not have the same quality as Virtus, but Virtus has done very well so there is something that is comparable.”

crikeyThis past week Paddy Manning reported on the booming IVF market for Crikey. (Australian for independent journalism, Crikey has a mission to “tackle the stories insiders are talking about but other media can’t or won’t cover.”)  Manning wrote, “The IVF industry is booming, with profits up and share prices rising. But are the private companies performing the procedure accountable to their clients or their shareholders?”

Great question, Paddy! Wish we could get you into a shareholder meeting to pose that query to the board directly.

As a result of my work in the venture capital world I recently received an unsolicited pitch deck emailed from an entrepreneur eager to partake in the “fertility” industry. The investor presentation contained a slide titled:
IVF Industry Overview: Not Just for the Infertile Anymore

It’s official folks. A medical procedure developed to help infertile couples has ballooned to a $9.3B industry in 2012 and it continues to find and cultivate new easy marks. That’s right. Why should infertiles have all the fun?

A new report projects that the IVF market is set to reach more the $21.6B by 2020.  In the U.S., the number of egg donation cycles has increased from 11,000 in the year 2000 to 18,000 in 2010 — driven in part by non-Americans who are flocking to our shores to harvest the eggs of young American women who don’t quite know what they’re the contractually obligated to deliver.

See also  We Have to Believe It to See It

Ironically, while there has been much rightful concern about exploiting the wombs of economically disadvantaged Indian women for surrogacy, young women in the U.S. are being lured into service for their eggs due to tighter oversight and restrictions or bans in countries including Australia, Germany, Austria, Italy, Switzerland…the list goes on.

I have recently become acquainted with a few women who participated in egg “donation.” Some engaged in the practice driven by altruistic ideas. Still others were wooed by the promise of thousands of dollars.

The Cost of Life

In an eye-opening article called Cost of Life, a young Florida-based business reporter Justine Griffin (inspired to act by childhood loss) takes us inside and behind the scenes to learn what happens when she is contracted to sell her eggs to an infertile couple living in Ireland. She gives us still more to mull over in this follow up interview on We Are Egg Donors. She explains:

It scares me how little this industry is regulated. No one is looking out for the young women who find ads for clinics or agencies on Facebook, Craigslist or in their university newspaper. There are few resources online that provide factual, unbiased answers and information about the process and the risks.

Justine considered backing out only to find the agency “warned me that if I gave up now, I would have to pay back the cost of every test the couple had funded so far. Blood work. Physical exams. A mental health test. The sum was reaching into the thousands. That was money I didn’t have…I was learning that once I signed my name on a contract, I was no longer in charge of my own body. My time and medical care belonged to someone else, someone who only knew me from the photos they’d seen in an online profile and as a series of letters and numbers that replaced my name in legal contracts.”

Unfortunately, no one is conducting longitudinal health studies on the long-term health impacts for the young women coming away from the egg “donation.” Justine ended up in an emergency room not long after her eggs were harvested. Now she is left to wonder “if my body would feel the effects of my donation for the long term, affecting my ability to get pregnant later on, or make me more likely to battle ovarian cancer.” Her story is not an isolated one.

Leah Campbell, now 29, “suffered from an aggressive case of endometriosis, which led to several surgeries, an infection in her intestines and, ultimately, the removal of one of her ovarian tubes. Painful endometriomas, or hard tumors, grew on her ovaries and kept her from having a child of her own.”

The New (Unproven) Frontier: Egg Freezing

In addition to couples around the world forking over tens of thousands of dollars for IVF or for younger women’s eggs in the hopes of creating families, there are now thousands of  women in their mid-to-late 30s signing on to the idea of buying into fertility futures by freezing their own eggs. What’s missing in all the enthusiastic reporting and advertising?  Jennifer Lahl, Founder and President of the Center for Bioethics and Culture warns:

Perhaps the most egregious omission from the ads promoting egg freezing is that there is no guarantee that freezing and banking your eggs for later use will produce a pregnancy that results in a live birth. In the early days of human egg freezing, it could take a hundred eggs to produce one baby. Slowly, over time, new and improved methods have been developed to increase success. Meanwhile, many make money by using women and their future children as guinea pigs.

Lahl cautions further in a recent article that “egg freezing does not really beat biology. It buys a small chance at giving birth, but at a very high price indeed.”

See also  That IVF Sausage Factory

Something tells me that like with IVF and egg “donation,” the pregnancy viability realities of egg freezing are being oversold.  The cynic in me thinks I need to go long on the makers of Kleenex. Sadly, I foresee lots of convulsive sobbing in the future.

Where Are the Consumer Protections? And Where is the Off Ramp?

I wonder how much more quickly I might have made the adjustment to the happy life I now have as a family of two if the clinics had devoted even a fraction of the time and energy and resources they spent upselling us to the next test or procedure to gently guiding us toward accepting the reality of our biology. Is it ethical to keep selling treatments that have a very high probability of not working?

I know I’m not the only one who craved a much needed off ramp and a gentle landing rather being cast adrift with no follow up whatsoever. Looking back I am appalled by the lack of humanity exhibited. I’d like to introduce the reproductive medicine teams to the staff at my local urgent care clinic and allergy shot office, both of which I visited last year. In cases where they were tasked with setting a broken ankle and tending to a sinus infection, my husband and I got far better overall attention and follow up than I ever experienced with the for-profit fertility staff.

This lack of follow up is something the Swedes looked into in 2010 in a study on unresolved grief. The researchers concluded that “support and counseling concerning grief reactions following IVF failure, and a structured final consultation after IVF may facilitate the grieving process after undergoing unsuccessful IVF treatment.”

As those of us who have lived it know …

Social isolation, a feeling of being excluded with no understanding from their social network, was experienced by both men and women after IVF, and communication about fertility problems with close family members and friends differed between men and women, resulting in less social support among men. A lack of social support or discontent with support given leads to more grief and depression in women. For those who actively seek social support and express negative feelings, a healthier mental health outcome is described than for those who deny negative feelings and do not seek or accept support from their social network.

My point is not that people should forgo medicine entirely. Clearly science has helped some achieve what was once thought impossible, but let’s not overlook the physical and mental health and the well being of vulnerable people. It is healthy people after all, not profits that should be the highest priority.

Welcome your thoughts.

Updated Friday, June 6. Please check out the great reporting in Elizabeth O’Brien’s Dow Jones MarketWatch piece 10 Things Fertility Clinics Won’t Say.

* By 2012, approximately 1.5 million ART cycles were being performed annually worldwide, with an estimated 1,150,000 failed cycles (76.7 percent) compared to 350,000 (23.3 percent) live births.



Another Perspective, News Reports and Studies 29 Replies to “With ‘Fertility’ Businesses Booming, Is Now the Time to Go Long on Kleenex?”
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.


29 thoughts on “With ‘Fertility’ Businesses Booming, Is Now the Time to Go Long on Kleenex?

    Author’s gravatar

    Staggering numbers. I’m kinda shocked. Thanks a lot for sharing so much important info. I’m now going to start reading the study. Fascinating!

        Author’s gravatar

        Thanks for the link, Pamela. Will read it later. Funny thing is that the anti-spam word for both my comments was “wisdom” HA HA…

    Author’s gravatar

    I’m in love with this post! Literally as soon as we walked through the door of our Reproductive Endocrinologist’s we sensed how profit driven the business was. There were flyers in the waiting room advertising financing for ART (conveniently neglecting to include the interest rate, of course) and $500 coupons for various fertility medications. It went downhill from there. We went through all of the testing where we always felt more like a number than a couple, and when it came time to meet with the RE we were unceremoniously given a (very unexpected) diagnosis, told that IVF was our recommended treatment with no alternatives given, and herded into a room to meet with the financial “counselor.” I’ll be honest, I was a mess when we met with the financial counselor who very matter-of-factly told us how much money we would owe them. Finally my husband put his foot down and said that we weren’t willing to discuss paying for the treatment until we had actually decided whether or not we wanted to do it. At the end of the day we decided not to go the IVF route. We just didn’t feel comfortable dropping $20,000+ on something that, best case for our situation, had a 90% chance of failing.

    I say all of that to say that I have never felt more vulnerable in my life. I felt preyed on. I felt like they wanted my money and if I got a baby out of it, that was a bonus. Ultimately I think we would have come to the same decision about pursuing IVF, but a little bit of compassion and understanding during the process would have been nice!

      Author’s gravatar

      Hi Kinsey,
      Thank you very much for sharing your experience here. So sorry you were so mistreated. I felt the same way at the first clinic we visited. I’ve had more interest from car salesmen who at least attempted to engage us as humans before moving us along to the finance manager. Seriously. I’m saddened for all couples who are reeling and in trauma only to be mistreated by an industry that has lost its sense of humanity … it’s the rare story these days to hear that clinics put people first. Instead we sit at the bottom of a priority list that has medicalization, scheduling, finance and maximum throughput among other items over consumer/patient well-being.

        Author’s gravatar

        I understand that they probably don’t want to get too personal with their patients because they are human beings too and staying emotionally distant is probably a coping mechanism for them, but a simple “I’m sorry” or “are you ok” could have followed the “you have craptastic ovaries” news (my paraphrase). At minimum he could have not given my husband such a big “atta boy” over his awesome semen analysis, which, of course, made me feel even more inadequate.

        Maybe someday I’ll deal with my emotions surrounding how we were treated by the fertility clinic. Right now we (especially me) are working through wrapping our heads around the fact that the chances of us ever having biological children.

        Sorry for the rambling!

          Author’s gravatar

          Not rambling at all! What we need is less “medicalization” around infertility. Understanding the complexity around it benefits all involved — in how care is delivered first and foremost. Let’s face it there are human-centric behaviors at the center of many encounters. I see it in every day life from a friendly smile and nod on the street from strangers to helping those in need of hand around the community as well as in the courtesy and respect my colleagues demonstrate in the professional world. Respect, compassion and caring don’t cost a thing — in fact they create immense value.

    Author’s gravatar

    The medical industry as a whole gets paid based upon number of services/procedures required rather than results. If a doctor gets paid more if they perform more procedures what incentive is there for them to perform less with higher success rates. This goes beyond just fertility but what needs to change is how these doctors and facilities make their money.

    To me if they were paid based upon the results rather than the procedures they performed, they would be more honest with their patient and we would see better overall care. The doctor/facility would get one flat fee up front and then an additional fee would be charged if success was achieved. I think that is fair for all parties and would in the long run make more money for the better doctors as they should.

    Author’s gravatar

    One of the many reasons we quit ART is their lack of ability to deal with the realities and psychological traumas of repeated cycle failures. To only focus on their successes is quite hypocritical for a profession that has such a high failure rate, I’d say. Are there any other business would get away with that, I wonder?

    During the financial consult for our final treatment, an FET, the woman commented that hopefully this would be the cycle and that we were really going to give this one our ALL (what in the heck does THAT mean anyway?). To which I responded “You mean just like we did on our other four cycles that failed?”

    It’s only 4 months since our last cycle failed, so it’s too soon to say whether or not I regret going as far and spending as much as we did. I can’t, as of now though, say that it was worth it. The devastation on all levels is remarkable.

    Thanks Pamela for pulling together this important data and research that tells an important way under told story.

      Author’s gravatar

      Thanks, Sarah. I could not agree more. That trauma almost did me in. Wishing you continued strength and peace. xo

    Author’s gravatar

    I suspected my original comment hadn’t gone through and I guess it didn’t. Oh well…! I believe what I said was that it was a good thing I had finished my morning tea when I read the line “Why should infertiles have all the fun?” Seriously??!!

    I completely agree on the lack of offramps and humanity. The last time I left our clinic, following a highly traumatic failed cycle and the onset of anxiety attacks, I was merely told to call when I was ready to start the next cycle. We never did go back, and nobody ever followed up with us. Fortunately, I had the business card of an infertility counsellor who had spoken at an infertility support organization event I attended. We had a session with her early on in our journey, trying to come to an agreement on how long we were going to pursue this, how much money we were willing to spend, how many cycles. She had been incredibly helpful then, and so I called her again. One one-hour session with her was enough to reassure me that what I was feeling was totally normally, that we HAD been through a traumatic experience, that living without children was a valid option and some simple things we could do to get our lives back on track and start to feel better again. The industry could use more people like her.

      Author’s gravatar

      Glad you came back to comment again, Loribeth. Website was wonky the past few days.

      As for your experience with the apathetic clinic, so glad you had the card for a good counselor. We definitely need more good souls to ease the trauma.

    Author’s gravatar

    I was diagnosed infertile in 2003. I went to a practice that was considered the best in its field, and I paid cash for the tests to give me a diagnosis, but I also felt like I was treated like a real patient and with care and sensitivity. I was told my odds were 1% to conceive naturally, 5% with IVF. My treating doctor discussed the costs but told me he would not take my money because it was so unlikely without a donor egg. I really appreciated his honesty and we didn’t pursue it further. However, by 2010 and when I was in my 40s, fertility treatment was marketed like any treatment could produce a baby if you were just willing and had the guts to do all that was necessary. At that time, I had a lot of regret and felt judged by people who knew my story. And it took my years to get back to feeling comfortable with the choice I had made. After reading your article, I feel like I did back in 2003 when I decided to not do the treatment – I knew in my gut it would not work and all of your stats reaffirm why my instincts were right. But I think it’s terrible that the fertility industry uses its marketing power to make people feel bad about their choices just so that they can get to their money.

      Author’s gravatar

      I hear you on the judgements and the impact of the marketing juggernaut associated with the “fertility” industry. I’m glad you followed your instincts, Maria. I’m also glad you had a doctor who leveled with you and wouldn’t take your money. You’ve given me some thoughts for a new blog post.

    Author’s gravatar

    Oh, I love that you’ve said this – not so much what had to be said. I’ve said it before and I’ll say it again, whilst strict regulations here in New Zealand limited our options (drug dosages, egg donor regulations, for example), I am very grateful that they did. Because when I was on the treadmill, I was really on the treadmill, and might have found it hard to step off voluntarily.

    That said, I had no emotional follow up, my Dr said the clinic counsellor would contact me (never did), and it was up to me to find my social network. Fortunately I had one in place that was there to listen and support.

    Apart from our brief IVF experience, I’ve just come from my first experience of privatised medicine. A post is brewing, and the essence of it is that it was brutal. It therefore made me flinch to see that the business case for taking an IVF clinic public was that it is a “high margin business.”

    Author’s gravatar

    PS. Crikey (yes an Australian independent media site) is an expression of surprise used in Australia and New Zealand. As in “Crikey!” Which is appropriate given what they reported. Sigh.

    Author’s gravatar

    Great post! So many ideas for future reading.

    I am not proud, but I did buy donor eggs (it is not possible in my country, I went to Czech Republic).

    I was heartbroken when it did not work out, even if I got two beautiful embryos on day 5.

    But now, few years later, I am in a way glad that it did not work out. Because – my dream was always to have a child together with DH. It was never my dream to have a child that was not biological mine.

    I was just so desperate, that I was willing to try just EVERYTHING.

    I never thought it would be possible to be over 40, childless and enjoying life. Note for younger readers – I promise, it is possible.

    kind regards from Europe.

    Author’s gravatar

    I wanted to comment on the viability of eggs frozen at a young age and used when you are older. We had to freeze sperm prior to my DH having cancer TX. They did a test thaw after 48 hours and said it looked like the sperm would survive just fine. When it came time to use the sperm about 4 years later, they just hadn’t survived well. You never know how those precious cells will do after being in a cryobank for years.

      Author’s gravatar

      Dear Jen,
      Thank, you, too for sharing your and your DH’s experience about the frozen sperm. It’s a cautionary tale. Just read your latest post. So sorry to hear about your adoption agency closing. You’ve had a lot to absorb. My heart goes out to you.

    Author’s gravatar

    I read your piece in the NYT when it came out and liked it very much, and stumbled upon your blog recently when trying to make sense of my IVF experience – or near-experience. What resonates with me in particular is that IVF has become an industry, and not just for the infertile, and not just for issues that it was developed for (blocked tubes, sperm issues). So this is my story. I am 41 years old and have a son that I conceived at first try at the age of 36. About a year ago we made the decision to try for another child. My gynecologist said, good luck, in 3-6 months go to a RE clinic. In two months I was pregnant, but it was a chemical pregnancy. Two months later, after much research, I went for a consult at a well-regarded clinic. My numbers were great – AFC 26, AMH 2.9 and FSH 4.5, everything normal. The doctor called me back immediately after the results and said that I was a great candidate for IVF and spent some time discussing how PGD (preimplantation genetic testing) would also enable me to choose gender if I wanted to balance my family. I found that weird. Nurse also called to get me ready to cycle in a month or two (she also mentioned how it was great that I had such generous insurance). I did not cycle because I got pregnant naturally that month. But miscarried. Back to the clinic – now my question was, listen, I have gotten pregnant twice in 5 months on my own. Miscarried, sure, but do I really need IVF? Shouldn’t I just try on my own? Are there other issues causing me to miscarry? Absolutely you do need IVF, was the answer. You are 40. You need IVF with ICSI and PGD. Only way to make sure you do not miscarry. Sigh. I researched some more and again pushed them – is IVF really the solution? They ran a miscarriage panel then finally, which was normal. Yup, IVF with PGD is your answer. When are you cycling already? Now I am approaching 41. We set the date to start the cycle. Never got there. 4 months after my miscarriage I conceived again naturally. I am now 12 weeks pregnant and all is well. When I called the clinic to report the pregnancy, the nurse was clearly annoyed. I have since done a lot of reading. I don’t think I was ever infertile and I probably did not need to go through any of this. After all, my mother had her menopause at 60 and my grandmother had a natural pregnancy at 46. But the IVF clinic was pushing me to do the most invasive procedure there is because I had great numbers at my age (and generous insurance).

      Author’s gravatar

      Thanks for sharing your story, PL. You’ve provided more evidence of the industry pushing costly IVF (and ICSI PGD) treatments on those for whom it is not necessary — and potentially introducing more health risks to mother and any infant conceived. Now outside the reach of the siren calls for more intervention, I’m more aware than ever before about the lack on longitudinal health studies in this area. This isn’t the first time the medical industry has gotten it’s priorities out of sync. I’m reminded of the Thalidomide and DES treatments prescribed for pregnant women in the 1950s and 1960s. Just because something appears safe and available doesn’t mean there won’t be health issues down the line.

    Author’s gravatar

    Thanks, Pamela, for responding! This is exactly right. Instead of a thoughtful discussion of pros and cons – likelihood of success, potential long and short-term implications for mother and child (if successful), other alternatives, I heard just one answer: IVF with ICSCI/PGD. And: when are you starting your cycle, time is ticking! (With the additional sweetener – though not for me – of being able to ‘balance’ your family).

    Author’s gravatar

    The first time we met with our RE, he hadn’t even seen our test results (they had been delayed while being transferred from another clinic), and nonetheless went straight to IVF as the recommended diagnosis, only briefly mentioning IUI. When we decided to try IUI, we weren’t given any more time with the RE, and were shuffled between a variety of staff, several of whom couldn’t answer any of my basic questions; when I asked for my questions to be passed on to the RE, they went unanswered. When our IUIs didn’t work and we went in to talk about IVF, the RE gave us what I feel was a vastly overconfident sales pitch, making it sound like we would have an 80% likelihood of conceiving, and downplaying all of the things that could go wrong. I am 36 yo (husband is 38) and we have a MFI diagnosis; from what I can tell from the CDC website, our chances of actually giving birth from a child from a cycle of IVF are closer to 30%–e.g., a 70% failure rate. Since telling our clinic that we needed to take a break before going forward with IVF, I haven’t heard from them at all. Oh, and no one EVER mentioned available support networks, counselors, etc.

    It makes me so angry to be treated this way!

    Author’s gravatar

    Very interesting and a read that really resonated with me. It’s been nearly 11 years since our failed round of IVF & FET and I knew in my heart it was time to stop but the doctors, without any explanation as to why we weren’t able to conceive, still wanted to keep pushing & actually insulted me when I said I needed to stop (6 rounds of IUIs as well). What really resonated with me is the 2010 study about the impact on the grieving process without proper support. No one ever talks about that, especially for men. We are now in our late 40’s and life is very good, but there is no doubt society and our social support systems are not designed for those of us who don’t have kids, that part can be isolating. Interesting comments from Tamaron about the topic in response to Carson Daly’s interview with Jennifer Aniston. Thanks for creating this Blog Pamela!!

      Author’s gravatar

      I just want to add one thing, our embryologist was wonderful. He was honest about our odds, straight forward with the information and kind. It was his opinion I valued most.

    Author’s gravatar

    Thanks, Connie, for joining in the conversation. I thought about your experience (so much like others I’ve heard from) as I wrote my latest post.

    […] psychological, social and… Click To Tweet Today’s cultural preoccupation with parenting and the growing commercial focus of the for-profit fertility industry has birthed a fear-driven patient/consumer population […]

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