Customers or Patients? What Happens When Doctors See Markets Not People
This week marks a year since Miriam Zoll and I authored The New York Times op-ed “Selling the Fantasy of Fertility.” The piece, which has since been nominated for a 2014 EMMA Exceptional Merit in Media Award by the National Women’s Political Caucus, had a wide reach and generated lots of discussion about the unregulated “fertility” industry. Our op-ed also raised questions about whether doctors and scientists, joined by entrepreneurial business partners, were putting profits ahead of the well-being of those purchasing expensive, sometimes experimental medical services.
There is a lot of money to be made in offering fertility-related procedures. In the past year, two Australian companies offering IVF have gone public. Even private clinics have become cash cows, as was called out in this article, “universities with medical school programs often host reproductive endocrinology departments that make enough money from IVF treatments to fund entire schools within the university. Generally, fertility doctors are among the highest-paid employees at private universities.”
Universities with medical school programs often host reproductive endocrinology departments that make enough money from IVF treatments to fund entire schools within the university. Generally, fertility doctors are among the highest-paid employees at private universities.
In the year since our op-ed ran, more troubling headlines and stories have come to light around the world:
- a Boston-based business makes clear its plans to “disrupt the entire $4 billion hormone business” experimenting with new fertility procedures offshore;
- Thailand’s surrogacy business rocked by scandals;
- Young women acknowledge health issues after they agreed to sell their eggs;
- The latest fertility industry-related money maker, egg freezing, turns on the marketing machine.
Lord Robert Winston, a British IVF pioneer, refers to egg freezing “as ‘a confidence trick’ that allows avaricious IVF clinics to exploit the fears of desperate women.”
While each procedure has its own unique complexities, all raise troubling questions: Have those in the business of selling fertility services become more predatory than ever? How far will the industry go before we see greater oversight and regulation?
The lightning rod for the NYT op-ed was a New York City-based fertility expo. This year, NYC is once again the location for enterprising “fertility” specialists. In search of more consumers, the opportunistic within the fertility industry are finding new (one could argue insidious) ways to grow the market. The latest target: single women who are being sold on “fertility preservation.” Egg Banxx, a pioneer in this burgeoning market, will hold its second cocktail party in two months. It’s business model involves being a matchmaker. It introduces women to a network of doctors who put women through a regimen of expensive drugs, tests and surgical procedures aimed at growing, extracting and vitrifying oocytes. (The startup, incidentally, also offers low interest financing.)
No doubt missing from the crowd will be this woman, who in her Egged On blog relays both the costs as well as the gory side of what’s involved in the procedure. She clearly didn’t feel she got the proper understanding about how the cocktail of drugs (ironic given the EggBanxx cocktail party scene described here) would affect her otherwise healthy body.
“I guess I’ll just bumble along, injecting myself with needles of whatever they give me, marveling at the fact that they let a complete fuckwit like me loose with syringes full of potentially harmful hormones, and assuming that they know what they’re doing and that the answer to “Is this normal? Am I going to die?’ is pretty much always ‘Yes’ and ‘Yes, eventually, but probably not from this.’
Another sobering report of what it was like to partake in an egg freezing cycle (several cycles are recommended to increase the number of potential eggs vitrified) comes from Lynn Bixenspan. She writes, “despite being told repeatedly I was frighteningly fertile for my age, and wondering how I’d avoided accidental pregnancy before this, everything went sloooowww. My eggs just weren’t really developing. I got to watch their (lack of) progress every couple of days on the ultrasound monitor and feel like a failure.”
In yet another piece, “Egg Freezing – Should You Do it?,” a doctor in a moment of candor notes, “it’s not a guarantee; it’s hope.”
It’s not a guarantee; it’s hope.
As a reminder, fertility preservation was initially reserved for young women diagnosed with cancer who might face infertility as a result of their eggs getting zapped in radiation or degraded through chemotherapy.
Which takes me back to a more basic concern: who in the fertility industry is looking out for the health and well-being of those being sold? These are procedures that involve large doses of hormones, surgery with anesthesia and the freezing and storage of eggs. If the eggs survive the thaw, phase two of IVF will begin. The eggs will need to be fertilized in a lab; if successfully fertilized they’ll be transferred back into a woman’s uterus, and if all goes well, a successful pregnancy might occur. That’s a lot of IFs.
Back to Lord Winston who observed, “Women are spending vast amount of money on this treatment but the success rates simply aren’t there. In fact less than 10% of the women who do it end up getting pregnant.”
In closing, consumers certainly need to do their homework, but more pressure is needed to contain bad behavior and profit-taking at the expense of vulnerable or desperate patients, which is usually how we see ourselves — especially when naked under a paper gown. Whether they’ve earned our respect or not we tend to defer to and believe people in white lab coats. That’s why policing and leadership also needs to come from within the medical community. Isn’t a doctor or healthcare provider’s credo is “first, do no harm?”
Reproductive medical treatments delivered in a responsible way by the fertility industry should be the rule, not the exception. Finally, when fertility treatments may not be in the best interest of a patient, care should be given in delivering that news with compassion. As has been proven in recent studies, loss of fertility is usually accompanied by emotional trauma.
Welcome your thoughts as always. Feel free to comment further below.
ESHRE and CDC Seeking Comment
As called out in my previous blog post, you can share your experiences. The European Society of Human Reproduction and Embryology has opened for review and comment fertility staff guidelines through Sept. 30: Routine psycho-social care in infertility and medically assisted reproduction – A guide for fertility staff. As current or former patients and health care providers for women and men facing challenges conceiving, your input would be most valuable. Please take some time to share your thoughts on this link.
Here in the U.S., the CDC is inviting public comment up until September 18 for ways to improve its national ART data collection, the NASS — 60 days notice 7 21 2014.
Connie
Another very thought provoking post. I read these things and feel like I am watching a futuristic scifi movie and then the gravity of the reality hits me and is quite disturbing.
Connie
Thanks!
Cristy
As thankful as I am that fertility treatments resulted in me bringing home my children, I completely agree with you that the fertility industry is geared more towards profit than actually treating the patient. Egg freezing is a newer example of this that makes me want to scream. Yes, there are those where undergoing this process makes complete sense, but for most women it doesn’t. And it’s completely driven by fear. Thank you for the links to the blogs. I have a lot more reading ahead of me, which is always a good thing.
Mali
Another great article, Pamela. It really frustrates me when “egg freezing” is mentioned in the media, or promoted by clinics, because there is never any mention that it still has a very low rate of success. In the same way that people think that IVF solves every problem, they now think that freezing eggs is as easy as freezing sperm. And of course, the industry does little to get the real story out there.
I’ve said it before, and I’ll say it again. I’m very glad that the fertility industry is tightly regulated here in NZ. (Though I do think it is too tightly regulated here – however I think we err on the side of caution.)
Klara
Great question: “who is looking out for the health and well-being?”
In my case: nobody. And I should know what I am talking about, I have had 10 failed IVFs in five different clinics in three different European countries.
Thank you for your post, Pamela.
Obie
I agree with Klara. Absolutely no one in RE industry cares about the physical and mental well-being of infertility/egg freezing patients. Why would they? It’s so easy to ensure a steady money flow by manipulating scared, depressed, desperate and mentally unstable aging women into treatments. A rational balanced person asks too many questions and may refuse to spend large sums of money on a promise of ‘hope’. Rational people are inconvenient.
loribeth
Can’t add much more to the wisdom above — I totally agree. But — congratulations on the award nomination! :) Hope it will help to further spread the word.
Jo
My fertility treatment left us without anything but two huge holes, one in our hearts & one in our pocket. They didn’t follow up with any kind of mental heath support at all. All I got was come back when you have more money. Depressed & grieving I would advise our women to really think about it before you put yourself through it. However I know the hope all to well :(
Kinsey
Such a thought provoking post! I read the Huff Post egg banking article over the weekend and it made my head spin. Reading the egg donation article that you linked made me cry. The fertility industry is just that, an industry. It is becoming more and more apparent that clinics are far more focused on profits than on the health and well-being of the patients and it’s sad.
Jay
Absolutely, very few doctors try to optimize a treatment while keeping the patients comfort and maximum efficiency in mind. My first IVF, my protocol was designed by my RE (who was also a bit of an idiot). The protocol he had me on had tons of injections, sent my hormone levels up sky high and yeilded very poor results (3 mature eggs, one frozen blast). My second IVF, I designed my protocol myself (I am a scientist, I read papers, I found innovative ways to reduce the injections I had to take, I found ways to keep the stimulation as natural as possible), and the results were 16 mature good quality eggs, 8 freezable high grade blasts, and one baby. Seriously, too many doctors just run an assembly line instead of coming up with a thoughtful, personalized treatment plan.
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