Skip to content

Silent Sorority

Infertility Survivors Finally Heard

Menu
  • My Story
    • Silent Sorority: Memoir
    • Coming2Terms Blog
  • About
  • Bylined Work
    • Times of London: The False Hope of ‘Fertility’ Benefits
    • NYT Op-Ed: The Big IVF Add-on Racket
    • STAT: Dark side of IVF
    • Do à la carte menus serve infertility patients?
    • New York Times Op-Ed: Selling the Fantasy of Fertility
    • WIRED: The Sobering Facts About Egg Freezing
    • FORTUNE: The Tough Truth About Egg Freezing
    • The Huffington Post
    • Medium ‘Human Parts’
    • Seleni Institute
    • New York Times Motherlode
    • Infertility’s Emotional Impact
  • In the News
    • MSNBC: Childless Not By Choice
    • STAT: IVF ‘add-ons’ rest on shaky science
    • IVF ‘Add-On’ Procedures Offer False Hope
    • Named ‘Top Health Blogger’ by Health Magazine
    • The Globe and Mail
    • The New York Times
    • MarketWatch – 10 Things Fertility Clinics Won’t Say
    • Women’s eNews
    • Radio: Living Childfree
    • Yahoo Shine Health Feature
    • The Broad Side
    • ABC TV Interview
    • Redbook
  • ReproTech Medicine Reporting
Menu

Customers or Patients? What Happens When Doctors See Markets Not People

Posted on September 7, 2014October 1, 2018 by Pamela Tsigdinos

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.)

See also  The Forum: What Would Make You Attend a Public Infertility Discussion?

egg freezing cocktail party

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?”

See also  Free To Be You and Me

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. 

The proposed improvements to NASS have been announced through a notice in the Federal Register (Vol. 79, No. 139, July 21, 2014). The Centers for Disease Control and Prevention (CDC), as part of its continuing effort to reduce public burden, invites the general public and other Federal agencies to take this opportunity to comment on proposed and/or continuing information collections, as required by the Paperwork Reduction Act of 1995.
To request more information on the proposed project or to obtain a copy of the information collection plan and instruments, call 404–639–7570 or send comments to Leroy Richardson, 1600 Clifton Road, MS–D74, Atlanta, GA 30333 or send an email to omb@cdc.gov.

Related Posts:

  • Fertility Industry's Troubling History of Omission, Growth Over Health, Safety
    Fertility Industry's Troubling History of Omission, Growth…
  • When Did Normal Aging Become an Infertility Condition?
    When Did Normal Aging Become an Infertility Condition?
  • The Story Behind The New York Times Op-Ed: Selling the Fantasy of Fertility
    The Story Behind The New York Times Op-Ed: Selling the…
  • Fertility Clinics Draw New Scrutiny
    Fertility Clinics Draw New Scrutiny
  • Oh, Betty! I So Get You
    Oh, Betty! I So Get You
  • WIRED Reframes Egg Freezing Debate
    WIRED Reframes Egg Freezing Debate

13 thoughts on “Customers or Patients? What Happens When Doctors See Markets Not People”

  1. Connie says:
    September 7, 2014 at 5:47 am

    Another very thought provoking post. I read these things and feel like I am watching a futuristic scifi movie and then the gravity of the reality hits me and is quite disturbing.

    Reply
    1. Connie says:
      September 7, 2014 at 10:18 pm

      Thanks!

      Reply
  2. Cristy says:
    September 7, 2014 at 6:33 am

    As thankful as I am that fertility treatments resulted in me bringing home my children, I completely agree with you that the fertility industry is geared more towards profit than actually treating the patient. Egg freezing is a newer example of this that makes me want to scream. Yes, there are those where undergoing this process makes complete sense, but for most women it doesn’t. And it’s completely driven by fear. Thank you for the links to the blogs. I have a lot more reading ahead of me, which is always a good thing.

    Reply
  3. Mali says:
    September 7, 2014 at 7:02 am

    Another great article, Pamela. It really frustrates me when “egg freezing” is mentioned in the media, or promoted by clinics, because there is never any mention that it still has a very low rate of success. In the same way that people think that IVF solves every problem, they now think that freezing eggs is as easy as freezing sperm. And of course, the industry does little to get the real story out there.

    I’ve said it before, and I’ll say it again. I’m very glad that the fertility industry is tightly regulated here in NZ. (Though I do think it is too tightly regulated here – however I think we err on the side of caution.)

    Reply
  4. Klara says:
    September 7, 2014 at 10:48 am

    Great question: “who is looking out for the health and well-being?”
    In my case: nobody. And I should know what I am talking about, I have had 10 failed IVFs in five different clinics in three different European countries.
    Thank you for your post, Pamela.

    Reply
  5. Obie says:
    September 8, 2014 at 1:37 am

    I agree with Klara. Absolutely no one in RE industry cares about the physical and mental well-being of infertility/egg freezing patients. Why would they? It’s so easy to ensure a steady money flow by manipulating scared, depressed, desperate and mentally unstable aging women into treatments. A rational balanced person asks too many questions and may refuse to spend large sums of money on a promise of ‘hope’. Rational people are inconvenient.

    Reply
  6. loribeth says:
    September 8, 2014 at 7:46 pm

    Can’t add much more to the wisdom above — I totally agree. But — congratulations on the award nomination! :) Hope it will help to further spread the word.

    Reply
  7. Jo says:
    September 10, 2014 at 4:05 am

    My fertility treatment left us without anything but two huge holes, one in our hearts & one in our pocket. They didn’t follow up with any kind of mental heath support at all. All I got was come back when you have more money. Depressed & grieving I would advise our women to really think about it before you put yourself through it. However I know the hope all to well :(

    Reply
  8. Kinsey says:
    September 10, 2014 at 5:01 am

    Such a thought provoking post! I read the Huff Post egg banking article over the weekend and it made my head spin. Reading the egg donation article that you linked made me cry. The fertility industry is just that, an industry. It is becoming more and more apparent that clinics are far more focused on profits than on the health and well-being of the patients and it’s sad.

    Reply
  9. Jay says:
    September 20, 2014 at 8:35 am

    Absolutely, very few doctors try to optimize a treatment while keeping the patients comfort and maximum efficiency in mind. My first IVF, my protocol was designed by my RE (who was also a bit of an idiot). The protocol he had me on had tons of injections, sent my hormone levels up sky high and yeilded very poor results (3 mature eggs, one frozen blast). My second IVF, I designed my protocol myself (I am a scientist, I read papers, I found innovative ways to reduce the injections I had to take, I found ways to keep the stimulation as natural as possible), and the results were 16 mature good quality eggs, 8 freezable high grade blasts, and one baby. Seriously, too many doctors just run an assembly line instead of coming up with a thoughtful, personalized treatment plan.

    Reply
  10. Pingback: When Did Normal Aging Become an Infertility Condition? - Silent Sorority
  11. Pingback: The Human Side of Failed IVF - Silent Sorority
  12. Pingback: Aging Is Now an Infertility Condition? - Silent Sorority

Leave a Reply Cancel 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.

My Books

Popular Posts

  • Infertility Community’s Black Sheep: Women Who Don’t Achieve Motherhood
  • Strong At The Broken Places
  • Not Having Children After Infertility ‘An Assault to Identity’
  • IVF Rollercoaster: BBC Radio Show Callers Describe ‘Grueling, Painful, Isolating, Roll of Dice’
  • Casting off Chains of Infertility: Fertility Diary, The Life of Pi and Search for Peace
  • Defining Abuse in Assisted Reproductive Technology
  • Identity after Infertility and Failed IVF
  • Infertility Community: A Microcosm of Society Misunderstandings and All
  • Ending Fertility Treatment Equated with Madness?
  • The Invisibleness of Infertility: To Pass or Not to Pass?

Subscribe to New Blog Posts

 Subscribe in a reader

Archives

Tags

Avalanche bioethics change Childless childlessness conflict culture egg freezing emotions expectations fertility industry fertility treatment friendships grief growth guest post healing health heroines identity infertility IVF Jessica Hepburn Jody Day journey lessons loss media motherhood myths narrative non-moms psychology reinvention relationships research RESOLVE silent sorority society stigma survival trauma travel truths what ifs

Categories

  • An Act of Kindness
  • Another Perspective
  • Bioethics
  • Book Musings
  • Changing Perceptions
  • Choices
  • Different Than I Expected
  • Documentary
  • Fortitude
  • Guest Post
  • Linking Around
  • Movies
  • News Reports and Studies
  • Pandemic
  • Pop Culture
  • Psychology
  • Relationships
  • Remembrance
  • Spontaneity
  • Strength Personified
  • Tapestry of Voices
  • The Cycle Relay Forum
  • Uncategorized
  • What I Wish I'd Know Then

Recent Comments

  • Sarah on Embracing Serenity
  • Phoenix on Embracing Serenity
  • Pamela Tsigdinos on Parallel Universe Reveals Hard Truths
  • Pamela Tsigdinos on Parallel Universe Reveals Hard Truths
  • Síochána Arandomhan on Parallel Universe Reveals Hard Truths

Blogroll

  • Bent Not Broken
  • Childless By Marriage
  • Conscious Childless Elderwomen
  • Des meandres aux etoiles (French)
  • Different Shores
  • Elaine OK (German)
  • Ever Upward
  • Femme Sans Enfant (French)
  • Finding A Different Path
  • Gateway Women
  • Infertile Phoenix
  • Infertility Honesty
  • It's Inconceivable
  • Jessica Hepburn's Blog
  • Just Being
  • Lavender Luz
  • Lesley Pyne
  • Life Without Baby blog
  • MSNBC – Life After IVF
  • No Kidding in NZ
  • Other side of the threshold (Swedish)
  • ReproTechTruths
  • Sitrrup Queen's Blogroll
  • SlidingDoors
  • Slow Swimmers & Fried Eggs
  • The Dove Cote
  • The Empty Cradle (Brisbane)
  • The Infertility Voice
  • The Next 15,000 Days
  • The NotMom
  • The Road Less Travelled
  • Uber Barrens Club
  • Walk in Our Shoes
© 2022 Silent Sorority | Powered by Superbs Personal Blog theme