In a powerful new essay, Questioning the Cult of Repro Tech, health advocate and author Miriam Zoll reveals little publicized details behind today’s now seemingly ubiquitous fertility procedure: in vitro fertilization (IVF). Her research and writing make for a compelling read. Zoll raises important questions about bioethics and the way fertility medicine is marketed and dispensed. This is yet another strong case for greater scrutiny around the practices of the fast-growing fertility industry.
Among the takeaways: from its earliest days the scientists and developers of fertility medicine have systematically downplayed health risks. In more recent years the fertility industry has sought to cultivate a caring, reassuring narrative. However, the marketing obfuscates and misleads patient/consumers at their most vulnerable.
Zoll’s piece takes us back to 1978 when doctors involved in developing IVF made every effort to carefully control and withhold information, going so far as to conduct the delivery of the first ‘test tube baby’ in a secret location. They also sold the rights to the story while carefully choosing what they would and would not divulge.
Barry Bavister, one of Edwards’ graduate students who helped develop the culture medium the embryos grew in, was quoted in The New York Times as saying: ‘If the baby was abnormal, they sure did not want the press in the delivery room.’
While the arrival of Louise Joy Brown ushered in the modern day fertility industry, absent from the reporting, Zoll notes, is “any mention of the almost 300 or more infertile women at Oldham General Hospital in Lancashire whose experimental IVF procedures had failed.”
Furthermore, Zoll writes: “the exclusion of these important details immediately conjured a public illusion that IVF was routinely successful and reliable. By not telling the whole story, the doctors and the media ushered in an era of mass misinformation about the risks and limitations of the procedure – a practice the global reproductive technology industry still employs today.”
It is not unusual for IVF commercials featuring cuddly babies or instant chat windows to pop up on the screen, inviting distraught couples to click just once to enter the Promised Land.
While fertility clinics happily showcase their successes, they do not disclose how many cycles fail. The fertility industry as a rule does a particularly bad job of record keeping. The one organization that does calculate failed cycles, the European Society for Human Reproduction and Embryology (ESHRE), asserts that of the 1.5 million IVF cycles performed annually, roughly 1.2 million fail.
Zoll writes, “Extrapolating this over the entire four decades, it is likely that more than 20 million patients and consumers worldwide have endured fates similar to those hundreds of forgotten women at Oldham Hospital.”
Business Interest or Patient Concern?
The fertility industry mantra today seems to come right out of Glengarry Glen Ross: Always Be Closing…
It’s queasiness-inducing to behold the slick marketing and sales lead generation efforts routinely employed by clinics eager to sign up new, usually overwhelmed customers. At this week’s ASRM 2015 Annual Meeting there were many expo hall snapshots and tweets.
In this Tweet the emphasis is on IVF patient traffic.
Increase your IVF patients 15-30%, guaranteed. Be sure to stop by #ASRM booth number 411! pic.twitter.com/Oj8nEAcVue
— Vanguard (@MedMarketLink) October 19, 2015
Among the troubling concerns this business expo raises questions about the underlying interests of the American Society for Reproductive Medicine and its members. It’s hard to square that Twitter image with this quote from ASRM Vice President Richard Paulson: “I think it is important that people understand that infertility is not just a cosmetic disease.”
When entrepreneurial business focus takes priority over evidence-based medicine one can conclude we’re living with an untenable system where the ‘do no harm’ mission no longer applies.
One doesn’t have to look far to see how difficult it is for consumers to truly assess the safety and efficacy of fertility procedures. Informed consent is hard to achieve if comprehensive well-documented, peer-reviewed research is hard to come by.
As Zoll stated so succinctly:
When you marry misinformation and the aggressive marketing tactics of the industry with the psychological profile of a woman who is nervous and fearful about her natural reproductive capacity, you begin to understand how new customers are being reeled into the waiting rooms of an estimated 2,300 repro tech clinics operating in 56 countries today.
Not to tar and feather all who make a living selling fertility procedures, some doctors do seem genuinely interested in patient care. In response to a report this week on ovarian cancer risk from IVF, Sarah Knapton of The Telegraph sought industry comment. 
“This study, from a huge database, suggests that women who have IVF with certain conditions, such as endometriosis, may be at increased risk of developing ovarian cancer,” said Dr Adam Balen. “The question remains as to whether women who have received IVF treatment should be offered surveillance/screening and, if so, how often and by what means. I think we need to call for a policy on this.”
A policy after 37 years, Dr. Balen, how novel! Better late than never fertility industry …
Meanwhile Professor Geeta Nargund, Medical Director of Create Fertility, which has five clinics in the UK, said that the findings were concerning.
“Not enough has been done to safeguard the health and safety of women undergoing IVF in the UK,” she said.
“IVF should be used only when it is really needed. What we do not want is our interventions to put women’s health at risk. We should be moving towards milder stimulation and fewer drugs in IVF.”
Agree, Professor! Now if only we had some way of holding clinics accountable to ensure that they aren’t putting women’s health at risk. Maybe there needs to be an industry standard on the type of screening, protocols and procedures dispensed?
At the risk of sound like a broken record: We are long overdue in establishing rigorous health and safety standards for the fertility industry and its procedures.
Now head over to read Miriam Zoll’s piece — and be sure to let me know what you think. Share it, too. It will help others understand what led to today’s often confounding Wild, Wild West fertility industry.
Another great piece, Pamela. I loved Miriam’s piece too, and I am so glad there are people talking about this. I remember trying to find information back in the early 2000s. There was a maximum dosage of stimulating drugs in NZ that was half of the amount routinely used in the US for Women my age/response levels. I felt cheated, until I unearthed some research that showed that increased dosages made little to no change on the take-home baby rate. So why do it? I can think of only three reasons, both of which are to benefit the clinics and drug companies. The first would be to promise a desperate woman/couple that there was more to be done. Whilst they may say that they do it because the patient wants it and they don’t want to break hearts, I think that excuse shows weakness, and is fundamentally untrue. What they really fear is admitting failure, and having that knowledge – that failure occurs more often than most people think – become public. The second is to continue a revenue stream for repeat cycles, promising different results when the statistics show this is unlikely. And the final reason is even more mercenary. The more drugs you prescribe, the more profit you make. No thought is given to the financial situation of the patient, or effects on their long term health of higher dosages. It really is a scandal.
Once again I agree with every single word! Also agree with everything that Mali said.
The further out we get from deciding whether or not we would do IVF, the more thankful I am that we didn’t go through with it. There is just so much that is unknown, particularly long-term outcomes. But in the meantime, before research proves that the IVF drugs do really horrible things to the human body, they’re going to make as much money as they can.
We need research that shows long-term side effects of these medications/procedures (as well as the collecting longitudinal data from live births as the result of IVF) so people can make informed decisions. Additionally we need to make the research accessible to the general public. The reality is that peer-reviewed research is published in academic journals, and short of being a professional in the field or holding a position at a university with access to research databases, it’s virtually impossible to access research articles without paying an exorbitant amount of money. Also, I think we need to have more stringent reporting requirements for fertility clinics, beyond numbers of successes/failures. I’d like to see cost per cycle (both meds and at the clinic), how treatment was paid for and if financed what the average interest rate is, how many people came back for a second/third/fourth/etc. cycle, and many more things that I could come up with if I took a few minutes to really think about it.
That’s a bunch of very good points. At some point during my ivf journey I started freaking out about the health/side effects, and started to madly buy a bunch of med journals to figure out what I was getting into. Here is if I remember correctly what I found out: Louise Brown and those ivf babies of that time were born without ovarian stimulation, docs discovered later that they could produce that many eggs. Then the game changed with ICSI (late 80s early 90s if I recall correctly), as it allowed to “treat” male infertility (and probably reproduce it to some extent) and hence they started stimulating a bunch of healthy women (whereas before the women had some reproductive problem to start with). But stimulation as we know it now is from the late 90s and protocols keep changing… so saying it is safe is an incredibly gutsy lie: how can we know? For sure there is no cancer statistical increase in the 5 years after the stimulation but after 20 years? We don’t know, infertility clinics don’t want to find out (and probably neither do the happy parents). But seriously, I am sure that anyone who has done an ivf deep down knows: it cannot be safe, no way.