Authors’ missed opportunity to start a dialogue replaced by hyperbole, selective statistics and a mean-spirited sensibility

I admit feeling defensive about the recent op-ed article “Selling the Fantasy of Fertility” that appeared in the New York Times. After all, I call myself a fertility marketing specialist, and the authors seemed to be accusing me, my colleagues and the entire fertility field (or industry as critics like to call it) of unethically shilling false hope and unrealistic expectations, all in the name of keeping patients on the infertility treadmill to make a buck – or in this case, megabucks.

When critics use a broad brush, the objects of criticism start feeling they have been painted into a corner.

So it has taken me awhile to absorb what Pamela Tsigdonis and Miriam Zoll were saying and to be able to respond to it.

Several years ago, I met Ms. Tsigdonis —  ironically — on one of the evenings when the movers and shakers of the infertility “industry” converge to honor those who have made a difference in the field: RESOLVE’s Night of Hope.  Pamela was there to receive a Best Book Award for Silent Sorority. My impression was that she is a lovely woman who wrote an important memoir on the all too frequent reality of failure, broken dreams and depleted bank accounts that is part of the family building journey for some former patients. She seemed like a much-needed voice for a perspective that does not fit the marketing narrative of the miracle of assisted reproduction, though I thought her message was more an indictment of how society treats the childless than an expose on fertility providers. Perhaps I was mistaken. But I thought I understood it then and feel I still get it now. If these individuals don’t tell their tales, who will?

So I wholeheartedly support the message of truth in advertising and telling this ending to the infertility journey. But what concerns and perturbs me is that instead of taking the opportunity to facilitate real change, the writers chose to write an exaggerated, mean-spirited diatribe and joined the group of critics, many with conservative agendas (read National Review article), who want to limit access and opportunities for the infertility community.

A Call to Buy Books or a Call to Action and Change?

Responsible criticism demands either offering solutions or reaching out to start a dialogue with those who can and should remedy the situation.  But the authors did neither.

They were offered the opportunity of a lifetime: writing an op-ed piece for the New York Times with its large and influential audience. They stated the problem, but how would they like it resolved and by whom? Do they want more people to “wake up” like they did and quit treatment earlier? Do they want more government regulation? If so, how, and what would be the pros and cons of this? Should all IVF clinics be mandated to show their SART/CDC stats before a patient’s first cycle? Should patients receive counseling after a certain number of failed cycles? Should doctors receive training on talking to patients about expectations and how to end treatment? Should there be more childfree living seminars? What roles should ASRM and the infertility nonprofits play? Do they want more transparency in mandated statistics? Do they want prosecution of providers who manipulate these statistics? Do they want or care if there is more mandated infertility insurance coverage? Hmmm, maybe I have to buy Miriam Zoll’s book to find out what they propose.

Using Hyperbole to Denounce Hyperbole

Then there is their use of exaggeration, selective statistics and vague statements to bolster their arguments about the infertility field and how it badly treats patients:

• Using hyperbole while simultaneously denouncing the use of hyperbole to push the myth of hope and not giving up.
• Holding the infertility field to a higher standard than counterparts in other medical specialties. Please read Melissa Ford’s response to this op-ed.
• Providing “surprising” statistics about IVF to demonstrate that the infertility field is perpetuating some type of massive fraud on patients who have fallen under its Rasputin-like spell, when, in fact, reproductive medicine is one of the few medical fields where the consumer can actually view success/failure rates for procedures. Now I and many others feel there needs to be more detailed and transparent statistics, i.e., how many cycles does it take an average for each clinic’s IVF patients to get pregnant or not get pregnant. And we also know that some providers manipulate the stats to their advantage. The key word here is “some,” not all. But a good analysis about their statistical cherry picking can be found in the response by Rachel Gurevich, the writer/expert at About Fertility.
• The infertility field lags behind its counterparts in medical advances. What evidence is there for this statement? This is a blanket generalization that does not seem to be backed up by the reality when I think of techniques like ICSI, blastocyst culture, egg freezing, preimplantation genetic diagnosis, next generation sequencing, timelapse analysis, ‘cheaper’ IVF, and other advances. But I will acknowledge the serious lack of funding in general for infertility both from government and private sources that is necessary to make the quantum leap to “cure” infertility.
• This line baffled me: It’s hard to miss the marketing and advertisements associated with fertility clinics and service providers that are understandably eager to do what any business does best: sell to prospective customers. Huh? Do they really feel that what the infertility field (or any business) does best is marketing? Not sure what to say.
• Dismissing the infertility patient community for criticizing those who walk away.  I find these statements incredibly arrogant. Here they are criticizing the same group for not being strong enough to walk away from treatment while they were just accusing the patient community of criticizing them for being too weak to continue with treatment.  Though I do agree that the US health care culture is focused on success at all cost.  But it is not limited to infertility; it is pervasive.
• Some people do, of course, become parents through this technology. Yes, five million have. Please read what Dr. Guidice from ASRM has written about this. And only a small percentage of the overall fertility patient population needs IVF since most will conceive via medications, surgery and other less invasive methods. Ironically for several years now, fertility clinic administrators have been talking about how higher IVF success rates are reducing the number of cycles their clinics are performing, i.e., fewer cycles per patient because patients are getting pregnant sooner! But from my perspective and many others, this is the right trend, which allows someone like me to focus on finding new patient populations that may have been under served (people of color, same sex, those waiting too long), etc. Nothing succeeds like success, right? I’ve always viewed marketing as promoting education and awareness and have found that most people wait too long to seek treatment versus being sucked into the infertility treadmill too soon. With the recession affecting everyone, including fertility providers, there have never been more financial options to be able to afford care. Is this as good as insurance coverage? No, it is not.

The Elephant in the Room They Didn’t Mention

The lack of insurance coverage for infertility treatment, which further commodifies the field, makes IVF into a self-pay service for many. This also strengthens the public’s perception of infertility treatment as an elective procedure. To not recognize this as a major contributing factor to the pain and misery of all patients during treatment, even successful cycles, seems very strange to me.

We Don’t March to the Same Drummer

To many, the infertility field seems to operate, as a unit – as an “infertility industrial complex” (as another critic has called it). As of this writing, I think there are 300 to 400 + clinics in the U.S, thousands of doctors, nurses, embryologists, counselors and administrators working in them, and many 1000’s more fertility providers working in various ancillary services.  Among this group there are exceptional practitioners, compassionate practitioners and mediocre practitioners and every description of competence and/or excellence in between. All of these providers work in profit-making settings, which is the model for the U.S. healthcare system. But the vast majority of those I have worked with and encountered in my 17 years of the infertility field are incredibly dedicated, skilled and caring and describe their professional success in terms of how much personal success they have afforded their patients. They consider themselves their patients’ advocates, not adversaries, as this op-ed implied. Of course I have met a few jerks and greedy bastards. But these are the exceptions, not the rule.  No doubt there are problems in the infertility field, which is going to places that no man has gone before; there are issues and topics that pose a myriad of ethical questions and I have witnessed from afar many individual acts of irresponsible and unethical behavior, and unfortunately, was once blindsided by a colleague who broke the law, allegedly in the name of family building. But I have also worked in other areas in health care and if I knew these disciplines as well as I know reproductive medicine, I would probably make the same statements.

Ms. Tsigdonis and Ms. Zoll are the not first critics of the field; they won’t be the last. I wish they had wanted to start a dialogue and afford real change. I wish they had not been so mean spirited, i.e., their commentary of Fertility Planit was an example of shoot to kill, not shoot to wound. The date of the conference was good timing for the op-ed, which was perfectly timed for the night of Ms. Zoll’s book signing.

Because otherwise they come off – to many of the very people they need to reach – as bitter, as Corey Whelan so aptly described  in the Examiner.

Coincidentally that same week we also were able to observe an example of grace and strength as embodied in Aisha Tyler’s brave admission to stop treatment. She wasn’t angry, she wasn’t bitter, she wasn’t accusing her fertility provider of hiding the truth, she was simply incredibly sad. Instead of being a victim of this horrific challenge, she decided to speak her truth. As Kristen Magnacca so wisely said: “There is peace in knowing you are enough and have done all that you need and are loved beyond measure.”

Soon we’ll be talking about the next controversy in the infertility community — we probably already are because I am a little late to this party. Remember how we were discussing the parents who admitted they were not happy about having their IVF twins? Today doesn’t it seem like old news? So this op-ed piece will be forgotten and nothing will have changed except the two authors will have sold a lot more of their books.