IVF is 40, Untold Stories Cast Milestone in New Light

IVF is 40 this month.

Type ‘IVF is 40’ into your news search engine of choice. You’ll find headlines that reflect a one-dimensional narrative. Missing from the narratives are couples who’ve had to cope with the aftermath of 20 million failed IVF cycles. You also won’t read about the health toll on young women involved in third party reproduction. Nor will you read about those wronged by clinics with unscrupulous business  practices.

Dig deeper, though, and you’ll find those who believe the untold stories matter. A consortium of health advocates and non-profits, for instance, this week rallied to issue this media advisory: IVF is 40: What’s Been Overlooked?

IVF is 40: 20 Million Failed Cycles

The Center for Genetics and Society also spearheaded a new two-page ‘IVF is 40’ fact sheet (download it here). Its aim is to help call attention to many important and little-explored issues, such as:

  • the high IVF failure rates;
  • the lack of support for those who experience IVF-related losses;
  • the lack of longitudinal health studies;
  • the IVF industry’s misleading marketing and minimal accountability
  • the social pressures on women to ‘never give up’ on motherhood

Facts take on even deeper meaning when you hear from the people behind these issues.

IVF is 40

IVF is 40:  Generation IVF

A few weeks back, Jody Day and Lesley Pyne proposed an online gathering of ‘Generation IVF’ women to discuss IVF is 40. Juggling time zones we logged in from Spain, Britain, Canada and a few points around the U.S. (New York, Florida and Nevada). Our Australian and New Zealander voices would have had to be awake and online ~5AM. That proved unwieldy. They will, most certainly, share thoughts via their blogs.

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IVF is 40

We agreed to spend a few minutes each talking about how IVF impacted our lives. That’s part one. Part two (starting 34.37 minutes) is a group discussion on what we would like to see changed, both within the industry profiting from IVF and society as a whole — our ‘asks.’

Most importantly, we believe it’s essential these #UnmaskingIVF stories be shared and heard.

There are a few ways for you to participate. You can share your comments here and on the participating blogs. (I’ll update and add links when all the posts are live). If you have a blog, feel free to write an #UnmaskingIVF post. We also want your ‘asks’ for the future.

UPDATED LINKS

  • Jody Day has a barn-burner post – Where Are the Childless Voices in the Celebrations of IVF’s 40th Anniversary?
  • Sarah imagines a world where IVF is dispensed humanely (and much more) – Childless Voices Resound on IVF’s 40th Anniversary
  • Loribeth makes clear we need to address the unsupported, unknown aspects of assisted reproductive technologies – Happy Birthday, Louise Brown
  • Berenice shares what it was like to be an IVF patient at Bourn Hall where the initial IVF experiments took place – IVF is 40 Video Post
  • Lesley remarks on the transformative importance of being seen and heard after IVF failure – IVF is 40, Forgotten Voices Speaking Out

You can listen to or watch our kickoff discussion in two different media formats.

The audio is available via my SoundCloud account: (Note: there’s a delay until the voices can be heard; it starts at .27 seconds)

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Or view on video (apologies for the Blair Witch Project effect as I speak. A new webcam is on order!)

From our discussion, we hope you get a deeper and more multi-dimensional view. We want to convey what it is to live in a world where the expectations of IVF science far exceed the reality. Further, we hope society gains understanding and respect for how hard it is to accept the limits of biology, and the fortitude and compassion needed to heal from the many losses.

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If you’d like to participate in the collective #UnmaskingIVF campaign, you can learn more here at ReproTechTruths.org, or share your story on our blog.

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Meanwhile, Kudos to Dr. Robert Winston who is on an ‘IVF is 40’ media tour calling for more evidence-based medicine and better diagnosis before IVF is sold. He is not afraid to criticize his brethren for being “on a gravy train,” and calls the “avarice from private practices and the desperation of couples a dangerous combination.”

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.

  1. Cristy

    Reading this gives me goose bumps. It’s taken 40 years for enough data to accumulate demonstrating that while IVF is a powerful tool, it’s not a fix all and hence has been abused for helping tackle infertility. 40 years is far too long and we’re overdue for the truth to come out.

    Thank you and everyone involved with this project (Sarah, Loribeth, Jody, Bernice, Lesley and so many others).

    • Pamela Tsigdinos

      I hear you, Cristy. I got goose bumps just researching and writing about this. We’ve been conditioned to think IVF is ‘safe’ and ‘successful’ however it’s anything but. I’m grateful to the women and women who have stepped forward as part of the ongoing #UnmaskingIVF initiative to bring greater attention to the risks and losses inherent in undergoing IVF.

  2. loribeth

    I was so honoured to be part of the Childless Voices discussion with you & the others, Pamela! : ) Thank you for all the work you have done (& continue to do) on this subject… IVF has come a long way in 40 years, but there’s still a long way to go to ensure better outcomes for everyone who undergoes ARTs — whether or not they get to take home a living, healthy baby.

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