Silent Sorority

Infertility Survivors Finally Heard

April 29, 2018

That IVF Sausage Factory

IVF is a Sausage Factory I was not Prepared For…

So writes Professor James Arvanitakis in an essay for The Sydney Morning Herald.

Oh how we hear you, James. We are immensely grateful for your honesty. In a few paragraphs you painted a clear picture of what it feels like to be on the receiving end of IVF.

“It all begins nicely. You personally meet the doctor in beautiful offices. Everyone treats you like a VIP whispering that the doctor has made so many families happy. It is private, serene, sophisticated, boutique.”

With deft writing you exposed the bait and switch tactics central to IVF clinic operators — once they have your money, that is.

Into the Sausage Factory

We handed over our first $10,000 payment and it is then that everything changes as you enter the sausage factory…

We know what’s coming James. It still hurts to know you and others are treated as badly as we once were.

We went through this process three times and all three pregnancies resulted in miscarriages. They were brutal and heartbreaking. We cried and had to mourn children that were never born. It is impossible to explain the loss and no words can capture the experience.

The response from the IVF clinic was ruthless.

Unlike the clinic operators, we mourn your brutal and heartbreaking miscarriages.

We are equally appalled and familiar with the ruthless, dismissive and money-grubbing response from the IVF clinic staff.

Our very successful and friendly doctor disappeared. All of a sudden, he was ‘very busy’ and we had to seek advice from others. We could make an appointment to see him but that would cost hundreds of dollars – even if all we wanted was a brief conversation about our options.”

It’s head-spinning how quickly IVF clinics abandon patients whose bodies and bank accounts don’t perform.

We were asked to either pay up or drop out of the program. In the end we stopped the process, and decided to get out of the sausage factory. The response from the clinic? Silence for at least four months. The first contact was to confirm that another couple would be accessing the donor. No inquiry about our own well-being. No duty of care. No follow up.

Ditto on the no duty of care. No follow up. Sadly, the IVF clinic business model works because the industry successfully cultivates a superficial, contrived image of baby dream makers. Look no further than this past week’s annual propaganda campaign to drive more revenue.

See also  Avalanche Author Julia Leigh On the Untold IVF Story

Co-opted by the Sausage Factory

National Infertility Awareness Week (NIAW) started as a grassroots education initiative. I once supported RESOLVE and ended up on its mailing list. I’ve watched as they’ve cozied up to deep-pocketed sponsors.

In recent years it’s all but become a mouthpiece for the IVF industry. The NIAW “partners” — mega IVF clinics, Big Pharma and medical financing outfits — are profit-driven entities that stand to gain handsomely by selling more cycles.

What better marketing effort could be had?  It’s cost-effective (e.g. free advertising) and who needs to pay copy writers or content providers when they have artfully enlisted patient-consumers and bloggers to do their sales lead generation.

You gotta hand it to them. A+ for strategy and execution

I would, however, assign an “F” for putting the RESOLVE president in the middle of a Wall Street trading floor with a well-funded, yes, profit-driven startup, Progyny, to ring the bell. In a word: Bold. However, not good optics, folks.  Might suggest you do a better job of toning down your financial/industry ties. How much did RESOLVE spend (or take?) to send its president to NYC?

It’s one thing if I notice, but what happens when your followers and other watchdog groups start questioning your motives.

Changing the Narrative — and the Reality

That’s why I was doubly glad to see the sausage factory headline appear when it did. The essay dropped at the same time the IVF industry was revving up its propaganda machine.  Professor James Arvanitakis gave us permission to include his essay on ReproTechTruths. We welcome your stories as a way to broaden and change the narrative. We hope our efforts help alter the reality so that  others never have to experience the sausage factory.

See also  Defining Abuse in Assisted Reproductive Technology

Caring, Responsible Evidenced-Based Medicine

p.s. I was struck this week by a different sort of healthcare experience.  During a routine teeth cleaning appointment my dentist flagged what he thought might be the start of a tooth infection. A seamless referral took me to an endodontist who carefully reviewed my xrays and engaged in a comprehensive exam. In a kind and caring demeanor, he concluded (and I quote): “Your tooth appears healthy and vital. I see no evidence-based medical reason to engage in any further treatment.”  He proceeded to answer all my questions and told me it wouldn’t be right to take my money or to put me through any unnecessary pain or inconvenience. The dentist office called the next day to see how I was doing. See? Not so hard.

Bioethics, Tapestry of Voices 7 Replies to “That IVF Sausage Factory”
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.


7 thoughts on “That IVF Sausage Factory

    Author’s gravatar

    This was a great essay; I appreciate you writing about your (valid) concerns about Resolve’s increasingly cozy relationship to the fertility industry. I haven’t paid much attention to NIAW & Resolve in recent years, as their focus is so clearly NOT on providing counselling and comfort and advocacy to & for people whose story doesn’t end in the traditionally happy way. I was glad to see Nicci & Andrew Fletcher’s \”We Are Worthy\” summit last week as counterprogramming to the usual NIAW cheerleading… \”Flip the Script\” indeed…!

    By the way — I also had a great endodontist experience around this same time last year… unfortunately, I was referred to him because I was in some pain and wound up having a root canal — but I was hugely impressed by the way the office was run (they squeezed me in as an emergency on the same day I saw my own usual dentist), and by the care the dr took to explain the procedure to me, to answer my questions and to ensure I was comfortable as he worked on my tooth. He gave me instructions for aftercare, and even gave me his home phone number and told me to call anytime that evening if I had further questions or concerns. It took me a while to feel comfortable afterwards and I was promptly granted an appointment for a followup visit to check things out — no charge. How about that?? Yes, it can be done…!

    Author’s gravatar

    Nodding along while reading this. RESOLVE’S theme of “FlipTheScript” should include changing the way medical providers interact with patients undergoing fertility treatments. The “Sausage Factory” essay should be a point of shame for the industry. It’s time we actually focus on treating infertility, not on making money.

    Author’s gravatar

    Professor Arvanitakis’ post is brilliant! I just love the conslusion:
    “Some respect, care and dignity may not change the result but would make the mourning process for the children never born a little easier.”
    Beautifully written & very true!

    And I love his thought: “Like most challenges we face, I learnt to adapt.”

    Thank you for sharing the article!

    Author’s gravatar

    Everything Loribeth said. I had always felt like a fifth wheel during NIAW due to Resolve’s blatant neglect of the involuntary childless (no saught procedures = no money I guess, right?). Am also disturbed by their charge for IF insurance coverage (something I am in and of itself for) coupled with their total non efforts to reform the fertility industry. In doing so they’d be biting the hand that feeds them I suppose. That’s one main reason why I was also very glad to see and participate in the We Are Worthy Summit this year.

    My medical experiences since my ten failed fertility treatments have been a relative paradise. My periodontist called me to see how I was doing after gum surgery, an experience which registered barely above nothing following all of the fertility procedures I had undergone. I almost fell over from shock and reveled in the moment of a medical professional, heck an actual human, giving a shit about my well being for a change. Seems that’s easier to come by when your ovaries and uterus aren’t the culprits putting your well being in question. My experiences with the medical profession amid my nervous system disorder have also been other worldly – getting the appropriate diagnostic tests run right away, having doctors decline to treat me as they saw no evidence of gastro intestinal or inner ear issues, being referred to the right specialists. Not so hard for other branches of medicine, apparently.

    Author’s gravatar

    Great post, Pamela. I was pleased to see the Australian article highlighted. And my jaw dropped open when you talked about the President of RESOLVE on the stock exchange floor. I love it when these profit-driven companies talk about tirelessly working to raise awareness on behalf of infertile women, when we all know they would stop in an instant if their work wasn’t generating income and profit. They try to sound so selfless, but their very cynical spin on their work just comes across as selfish, not selfless.

    Once again, for the record, I’m thankful that the NZ fertility industry is regulated, and that my doctor (RE) said that he wouldn’t support me continuing, however much I was prepared to pay. (Though perhaps a lower “success rate” would have reduced his government funding? I don’t know.)

    Author’s gravatar

    Great post – I remember all too well my own experiences of ‘the sausage factory’ here in the UK and also remember how the powers that be only seemed interested in me undergoing further (more expensive) treatment despite one of my ovaries failing after the 2nd fresh cycle of IVF… they were not interested in offering me any sort of emotional support but psyched up to ‘reel me in’ it’s all wrong… the lack of emotional support is beyond dreadful.

    Author’s gravatar

    Wonderful article.. i loved it thanks for sharing

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