Silent Sorority

Infertility Survivors Finally Heard

October 16, 2016

It’s Performance Review Time, Fertility Industry!

Performance review time, already, for the fertility industry?

Yes, it’s mid-October so let’s check in on the American Society for Reproductive Medicine (ASRM) confab. This year it’s billed as a Scientific Congress and EXPO. Per usual, there are a few eyebrow raisers.

I followed #ASRM2016 on Twitter over coffee this morning. (A decision made easier as it was raining buckets here in California).

Before long I engaged, respectfully, in a few discussions. Below are some of the highlights and observations. You can find more on Healthcare in America, which published my piece The Cash Cow in ‘Fertility’ Medicine.

Performance Improvement Needed in Patient Care

Many of us didn’t need research to confirm that distress of infertility equals that of a cancer diagnosis. What many on Twitter and society at large may not know is what Dr. Julie Bindeman tweeted: cancer survivors have better emotional outcomes.

That’s right. For those who may be surprised, let’s start with a few facts.

Performance Reality Check: Facts Don’t Lie

Fact #1: Fertility is now a huge market. That’s right: a market. The global In-Vitro Fertilization (IVF) market size was valued at $9.6 billion in 2014. A more recent report by Grand View Research, Inc. projects the global (IVF) market will reach $27 billion by 2022. At an average of $15,000+ per cycle, clinics profit handsomely. Not surprisingly, several cycles are common and recommended. The lack of regulatory oversight in the U.S. has caught the attention of investment banks who see ‘market’ opportunities:

                         Harris Williams & Co. investment bank slide

Fact #2: IVF cycles more often end not with a baby but with heartbreaking failure. Low success rates and health risks associated with treatment are absent from clinic marketing materials, but the best available data from the Centers for Disease Control shows a failure rate of 72% across all ages. Also hidden from marketing materials is the significant emotional toll caused by IVF failure.

See also  Reality Check: IVF Industry 2019 What You Need to Know

Fact #3: It’s been nearly 40 years since IVF became available. There has been explosive growth in the size and scope of clinics and profit taking but no commensurate improvement in outcomes. Developed initially for a medically indicated fallopian tubal disease, IVF is now routinely marketed and dispensed in cases of mild male subfertility, endometriosis or unexplained infertility. Yet there is no evidence-based science to support these applications.

Fact #4: A study published in the British Medical Journal in 2014 went further stating the risks of IVF could outweigh the benefits. There are calls this year in Australia and the UK for greater scrutiny of reproductive medicine practitioners. That is not the case in the United States.

Performance Tip: Choose Themes That Aren’t Double Entendres

Instead, the unfettered fertility industry convenes in Salt Lake City this week focused on ‘Scaling New Heights in Reproductive Medicine.’

There’s some troubling irony, foreshadowing even, in this event theme given that the American Society for Reproductive Medicines’ ‘supporters’ include a who’s who in Big Pharma — a group of companies not well known for putting patients ahead of profits.

Now let’s look at those seeking to help ASRM members — fertility clinics and service providers —  achieve new heights. To attract new patient/consumers in today’s competitive marketplace, it’s not enough to simply practice good, ethical medicine, you apparently need to invest in a good social media presence.

There’s MDConnect, a data-driven #marketing agency for the #medical industry, specializing in digital patient marketing:

And while most people hope that a fertility clinic’s first priority is patient well-being and ‘do no harm’ –as evidenced by dispensing compassionate, evidence-based healthcare — we can’t ignore the fact that clinics invoice regardless of how well they perform. Clinics earn based on volume so the goal is to sell as many treatments as they can — regardless of outcome.

See also  IVF is 40, Untold Stories Cast Milestone in New Light

Performance Observation: ASRM Confirms Patient Aren’t the Focus

Instead of promoting the best Manhattans in Utah, the ASRM might do better to promote and organize some meaningful sessions that seek to improve the overall patient experience.

The only paper at the ASRM event to discuss the infertility patient experience in the U.S. reveals only 29.4% of 499 surveyed agreed their nurse mentioned resources for emotional support. That’s truly disturbing given the level of distress raised at the opening of this piece.

Performance Tip: Next Year Focus on the Patient Not Profits

Since the industry seems incapable of understanding how to police itself or how to prioritize healthy patient outcomes on every dimension, let’s suggest a few ideas for next year. We can start with this one:

Has Patient Health Taken Back Seat to Fertility Industry Commercialism? or How Has Fascination with Science and Profit Become a Priority Over the Human Toll Caused by IVF Failure?

You can learn more about the patient experience in this podcast: Is it Time to Hold Fertility Industry to ‘Do No Harm’ Accountability?

Finally, the ASRM social media team might have had one too many Manhattans. They ‘liked’ my Tweet calling for more oversight before ‘un-liking’ it and then blocking me from receiving its Tweets. So, I guess the truth hurts.

Bioethics 7 Replies to “It’s Performance Review Time, Fertility Industry!”
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 “It’s Performance Review Time, Fertility Industry!

    Author’s gravatar

    How frustrating that the industry focuses so much on profit. I’ve (recently) been taken to task on my blog for calling it an industry, but talking openly about improving their Return on Investment, and ignoring patient outcomes, surely means that they openly invite being labelled as an “industry.”

    In contemplating this, I wonder if NZ’s industry is better at policing itself, not only because there are just a few players in our tiny market, but also because it knows that regulators/the government are watching what they are doing, and it needs to act responsibly, as the government is its single biggest client. I would go so far as guessing – though I don’t know – that government-funded cycles are the majority of its business here.

    And yep, if you’re being banned from their Twitter feeds, you’re obviously doing something right!

    Author’s gravatar

    Great post (as usual)! And the Twitter anecdote is hilarious.

    I just have a comment regarding the sentence ” IVF is now routinely marketed and dispensed in cases of mild male subfertility”. In France (and in many other places in Europe) after the arrival of ICSI (the technology of implanting the spermatozoid directly inside the egg), IVF-ICSI is used in very severe male infertility cases, as only one swimmer is needed (they can even collect them directly from the testes if none is found in the sperm), and they do that even in high DNA fragmentation cases, which have extremely low success rates. That probably reproduces male infertility to some extent but interestingly enough nobody wants to raise that question.

    Author’s gravatar

    Ha – very chucklesome that they got carried away and ‘liked’ your Tweet before refocusing and then blocking you. Geniuses.
    It never fails to shock me that there is no evidence-based science to support the use of IVF for most of the conditions it’s used for. I remember doing my own (very confusing) research and concluding that IVF might not have many advantages at all for my severe endo over trying to conceive naturally for a long time and hoping for a ‘lucky month’. Was I wrong? I still don’t know. I am 99% sure however that the ultra-aggressive IVF that is thrown at severe endo and low ovarian reserve (for example) is NOT the right approach, and that mild IVF or other methods of monthly monitoring might be more effective – but this takes longer and doesn’t offer the big financial rewards.
    The first priority of my own clinic – Sims Fertility, Ireland – was patently NOT patient well-being and ‘do no harm’: they pushed for ever-more aggressive and low-chance treatments and never mentioned stopping or having counselling. I wonder did they really think that this approach boosted the chances of my succeeding, or were they just making desperate stabs in the dark because they didn’t really know anything? They are certainly mysterious: they still haven’t answered a query I sent them around Sept 20th (as a would-be prospective patient) about where I can find their live birth rates. Yet they market themselves on their hyperbolic website as “world-class” and “Ireland’s most advanced”, and “happy to publish and compare our success rates”. And yet: resounding silence when you ask for them….
    Great piece.

    Author’s gravatar

    I’m so glad that you are following this conference again this year. If one doesn’t think that this is an industry, they just need to follow these hashtags. Thanks for being a thorn in their side. This almost makes me want to sign up for Twitter, but I suspect it would get me into some trouble.

    I know the exact interaction that Mali referred to. While I used my better judgement and didn’t respond to that particular comment (because you really can’t reason with people like that), but I did email her personally.

        Author’s gravatar

        Agree! We are generating quite a conversation…encourage others to also get into the discussion on Twitter #20MFailedIVF … there’s power in numbers.

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