Silent Sorority

Infertility Survivors Finally Heard

December 31, 2015

Did the Fertility Industry Underwrite Latest IVF Study?

A new IVF study caught my attention just before powering down for Christmas. As much as I wanted to coast into the holidays and give my blog a rest, I couldn’t get this headline in The New York Times out of my head:

With In Vitro Fertilization, Persistence Pays Off

‘Pays off’ that’s a nice play on words, isn’t it? IVF persistence pays off for whom? Fertility clinic owners and the pharmaceutical reps selling IVF cycles, that’s for darned sure.

As I mused on it further it occurred to me that maybe the headline writer was auditioning for a job with the fertility industry. Fertility clinics and Big Pharma have big marketing teams. I see a bright future for him/her there.

My thoughts then shifted to more sobering matters as I added up all the associated costs. I have a hard time imagining there are lots of regular folk who have $90,000-$150,000 burning a hole in their pocket. That amount or more will be needed for six-plus rounds of IVF procedures and drugs. Still more $$$ will be needed to cover the cost of therapy not to mention the extra cash that may — and it’s a long shot — may be required for any high-risk pregnancy and potential neonatal intensive care stay.

Kudos to JenD who had this to say in the comments section:

IVF lunacy

In the tell-it-like-it-is category, you have to appreciate this commenter’s shrewd response on the business aspect:

commentStill, it’s the emotional toll that resonates.  Said Taylor Smith after two failed IVF cycles:

“It’s not just the money being there,” she said. “It’s the emotional toll. Everyone is invested in it. My mother was more upset than I was.”

I know, Taylor. I know…I hear you loud and clear. 

2016 ‘Do No Harm’ Resolutions

[bctt tweet=”The ‘don’t give up’ message implied in the latest New York Times IVF story is an unhealthy one”] It’s unhealthy physically, emotionally, financially and, yes, socially, as it further implies that anyone who doesn’t ‘keep at it’ with IVF is somehow at fault.

See also  When Barren is Fruitful

For 2016, how about the fertility industry adopts these ‘do no harm’ resolutions:

  • I won’t put financial motivations and ‘upselling’ of another IVF cycle ahead of a patient’s overall well-being, and I will apply safe, medically indicated protocols.
  • I will prioritize my patient’s emotional health
  • I will fund and/or participate in longitudinal health studies for all involved in assisted reproductive technologies (ART)

Let me take my new year wish list one step further. How about this aspirational headline and subhead:

Fertility Industry Gives Birth to Healthier Practices
Efforts Lead to Greater Emotional Support In and Out of Clinics

Wouldn’t it be nice to see that story line take shape in 2016?

As always, welcome your comments.

News Reports and Studies 23 Replies to “Did the Fertility Industry Underwrite Latest IVF Study?”
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.


23 thoughts on “Did the Fertility Industry Underwrite Latest IVF Study?

    Author’s gravatar

    This article made my heart stop. Nine rounds of IVF (where a cycle is considered both the initial fresh cycle AND any additional FETs to use the embryos generated) for only a 66% success rate. How is this even considered reasonable odds?!?!? And sadly, I think Martutin is on to something with only paying for successful cycles as it would force the whole industry to overhaul its approach and start focusing on understanding this disease on a more holistic level.

    Thanks for this post, Pamela. We do need to address “never give up” more aggressively for this exact reason. Because over $100,000 for a 66% success rate should result in questioning the ethics behind all of this.

      Author’s gravatar

      I needed the paddles myself. You and I are of like mind, Cristy.

    Author’s gravatar

    This headline caught me off guard too! I didn’t venture into any comments sections about it, but I did pull the original JAMA article and read it. There was exactly one sentence about the emotional toll of IVF (if you’re interested it was: “Infertile couples discontinue IVF for a number of reasons, with a systematic review of patient perceptions concluding that the most common reasons were the physical or psychological burden of treatment, relationship problems, and personal problems.”). Financial toll aside, I can’t wrap my brain around the emotional toll that nine cycles would take on a woman and couple. Studies like this one are only good for the industry because really almost no good can come out of that many cycles of IVF.

    Anyway, I love your resolutions for the industry! Wishing you all the best for 2016!

      Author’s gravatar

      Thank you, Kinsey, for reading through the original JAMA article. Mind-boggling indeed.

    Author’s gravatar

    Exactly. IVF persistence pays off for whom?
    Certainly not for me. I have had 10 failed IVFs.

    Wishing all the best in the new year to you & your husband.

    lots of love from sLOVEnia,

    Author’s gravatar

    Hear! Hear! – to your recommended No Harm resolutions.

    Yes, the “Persistence Pays Off” headline is particularly ironic. Apart from the aspects you’ve already raised, I dislike the judgemental tone of the headline. It reflects the “never give up” refrain, the implication that you must have self-discipline and persist and that only the weak “give up.”

    Nine full cycles, as Christy points out, is getting close to criminally negligent. But then, so was OctoMom etc. It doesn’t seem to be an issue that has particularly bothered much of the fertility industry.

    I’m very tempted to forward your blog to our local clinic here …

      Author’s gravatar

      Do share! Would like nothing more than for the clinics to own up to the problems they help create.

    Author’s gravatar

    Love your do no harm resolutions. I’ll dare to dream with you.

    I noticed there was no mention of what becomes of the ONE THIRD of patients and their needs who try multiple times and got nothing. Uh, palliative care, anyone??

    A 66% chance of “success” after multiple cycles really isn’t that great. That’s not even anywhere near close to everybody.

      Author’s gravatar

      Yes — palliative care would go a long way following the trauma induced by IVF procedures. Thanks for dreaming with me!

    Author’s gravatar

    When I saw the headline in a couple of weeks ago, I remember thinking “this doesn’t benefit those with infertility”. I don’t know anyone who has $100K+ just sitting around for IVF. That’s not counting that many people who wind up having IVF also have various procedures and treatments prior to IVF, which also add to the tab. Also, if a person undergoes that many rounds of IVF, there is going to be a lot of emotional cost as well – almost certainly there will be losses including things like a cancelled cycle, a negative beta, miscarriage, ectopic, or stillbirth. None of those are small losses. And even based on the study, a third of those who pursue that many rounds of IVF are still going to walk away without a baby – that’s a lot of people.

    Seeing such a study makes me angry as an infertility/IVF patient. I want to see researchers taking on questions that might improve the IVF process and outcomes. I want to see long term studies about risks to all involved (a study I ran across recently showed an increased risk of preterm birth in IVF *singletons* – this, again, is not a small issue) and the effects of so many hormones BEFORE I see studies implying round after round of IVF is somehow going to be beneficial. Medicine often based on a “risk vs benefit” model…but how are we, the patients, supposed to weigh these options and make these decisions when the actual risk to both the IVF participant(s) and any possible offspring is so ill-defined?

      Author’s gravatar

      Thanks for the comment, Katherine. Yes. We are LONG overdue for in-depth efficacy research and long-term health studies. I echo your sentiments that decision making in this area — already complex — is made harder when the risks are not well-defined.

    […] York Times declared “With In Vitro Fertilization, Persistence Pays Off.” But as Pamela Tsigdinos suggests, the payoff is only for the fertility clinics and the pharmaceutical reps promoting IVF—not the […]

    Author’s gravatar

    If providers were paid based upon results rather than number of procedures I bet this study would be all over the place with no consistency because fertility itself is random.

    Author’s gravatar

    I just realized that I never commented on this, in the middle of the Christmas season busy-ness. Not that I can add much to the conversation that hasn’t already been said ;) but I wholeheartedly agree. Studies like this only fuel the “never give up” mindset that pervades in our culture (and not just among those going through infertility). But the money, the emotional toll, the physical strain on your body of going through multiple fertility treatment cycles, is something you can’t really imagine until you are in the middle of it… and the long-term effects are still largely unknown.

    For me, three medicated IUI cycles were quite enough; I did not think my wallet, body or mind could withstand the even greater pressures of IVF (which was highly unlikely to succeed, no matter how many times I tried it). I am sorry I never got to have children, but I’m not really sorry that we chose to cut our losses and bow out of treatment at the point we did.

    […] a Family points out the unease she feels around such a study. Pamela Tsigdinos sums up the real ethical problems inherent in advocating six to nine rounds of IVF. Amy Klein and Dr. Jeffrey Braverman take to task […]

    Author’s gravatar

    As I considered embarking on my third cycle of ICSI, after 2 previous unsuccessful attempts, one huge question burned in my mind: With every failed attempt, was I just joining an ever-smaller group of people for whom ART will never, ever work? In essence, if it doesn’t work the first couple of times, are you flogging a dead horse? At the time, this study had not been published, and, as the authors of the JAMA paper point out, the previous studies examining this question were limited in size and scope, and pre-dated many of the recent developments in ART. As someone suffering infertility, I am familiar with the cruel marketing of hope by the fertility industry, and the judgement from others regarding whether you’ve really “tried hard enough” (and it’s always others who have no idea of the special hell that is a failed cycle of IVF/ICSI). But both as a patient and as a scientist, I cannot help but be pleased to see a thoughtful, well-conducted and large scale (>250,000 cycles undergone by >150,000 women) study as this come out – it answers such an important question; important to clinicians, patients and policy makers.

    One study cannot address every issue; I am aware of several studies currently ongoing looking specifically at the emotional toll of ART, and the authors themselves say that cost-benefit analysis is beyond the scope of this study, as is the consideration of the long-term health implications of repeated ovarian stimulation. But that burning question haunting me, to that specific question they have provided a robust answer, which I, and others, can now use when deciding whether to face that “one more try”. If nobody ever addresses these questions, difficult as they are, then how can any rational decisions be made?

    And whilst I appreciate that your title question of whether this study was underwritten by the fertility industry is more to provoke debate than to call the researchers’ motives into doubt, I feel it bears pointing out that the authors are all researchers at respected UK universities, and the work was funded by the MRC (and therefore the UK taxpayer), the NIH (US taxpayers) and the Wellcome Trust (charity), and the data analysed is the regulatory data collected by the HFEA on every single UK ART treatment cycle, irrespective of whether that cycle was funded by the patient or the NHS. I cannot comment on the motives or funding of any journalists reporting on the research; I can only say, from experience, that the researchers will have had little or no control over how the media report their work.

      Author’s gravatar

      Definitely hear you on the disconnect that exists between the research and the way it’s “spun” …

      It also appears we are in agreement that MORE research — especially longitudinal studies on women’s and infant health are needed as well as in-depth studies on the mental/emotional health impacts of fertility treatment. This has been woefully under-studied. There’s a great need for reform in the way fertility clinics address the whole patient — not just the reproductive organs. Anecdotal evidence makes this abundantly clear: the trauma that results from fertility treatment lasts long after the patient leaves the clinic.

    Author’s gravatar

    As one who spent NINE YEARS trying to get a living baby out of my poor body, I can relate.

    But here’s the thing: no one goes into trying to conceive thinking they are going to have to have help of technology—at least I sure did not!

    I wish doctors were more upfront about the real odds of success and the real costs and risks, AND mostly I wish they were KINDER to their patients because I encountered some pretty rude doctors over the years (as well as kind ones too.)

    I also wish I’d known to buy life insurance BEFORE I conceived my daughter, as I discovered to my surprise that being pregnant at 44 made me “too high risk,” per the life insurance agent.

    “In this day and age?” I remember thinking, “pregnancy at 44 is ‘too high risk?’ This agent must not know what he’s talking about!

    Nope, turns out he did!

    At the very end of my otherwise easy, blissful pregnancy I came down with a severe case of HELLP Syndrome and nearly died (stroke/coma/liver rupture.)

    Obviously had I known what I was in for I would have either remained childless or pushed harder to figure out adoption (which we had looked into it been put off by after the adoption agency said 90% of their birth mothers had drug and alcohol dependency and that we would JUST have to pick WHICH prenatal drug exposures we could live with!

      Author’s gravatar

      “no one goes into trying to conceive thinking they are going to have to have help of technology—at least I sure did not!” yes, same here!
      “I wish doctors were more upfront about the real odds of success and the real costs and risks” Yes
      “I wish they were KINDER to their patients…” YES!

      Thanks for your comment, Lisa. Appreciate your story.

    Author’s gravatar

    A brilliant brilliant blog Pamela. Saying what needs to be said. As always. Jessica x

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.