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.