The IVF industry has a hope problem.

Hello everyone, happy Friday!

I read a devastating piece in The Cut this week titled “11 Rounds of IVF, $250,000, and No Baby”. It’s not often I read something that makes me feel as heartbroken as I did reading this. Naturally, heartbreak leads to impassioned soap-box style ranting, which I have decided to share with all 10,000 of you brilliant Béa Bulletin readers. Strap in kiddos.

The Cut piece is about the growing number of women over 45 walking into fertility clinics, and what the fertility clinic industry does when they arrive. The story tracks Kristi, who at 44 had her first egg retrieval. She drives 11 hours each way to a clinic that offers better financing terms. She’s 46 now, and has had 12 failed embryo transfers. Donna, who started IVF at 44. Kelly, who at 46 (with 9 failed IVF cycles) recently flew to the Bahamas to undergo an experimental procedure not yet cleared by the FDA. And countless others.

A comment in a Reddit thread (read: cesspit) really got me: “The fact that we as a society downplay the health and emotional impact of these very expensive interventions on women, while inflating the odds of them being successful, feels really…”

… feels gross. Unkind. Unthinkable. Predatory.

And I couldn’t stop thinking: who the hell is treating these patients and keeping them coming back? Why hasn’t anyone done anything about this? Where are the guardrails?

As it turns out, the regulations that protect us as patients don’t exist, and the single reporting requirement does exist is unenforceable and ignored by the industry. And I got to wondering… why? IVF is medicine. And in most other areas of medicine there are guidelines. Rules. Regulators. Where is all that in fertility? Well, i haz thoughts.

Fertility is low-risk medicine. That’s exactly the problem.

You are vanishingly unlikely to die from a failed embryo transfer or an experimental add-on. Which sounds reassuring, right up until you realise that “you probably won’t die” is a very low bar for a field of medicine to clear. It also means there’s almost no consequence for a clinic that keeps selling you one more round, one more add-on, one more try.

Compare that to the most escalated treatment (as IVF is in fertility) in another area of medicine, say cardiology: open-heart surgery. A cardiac surgeon isn’t selling you hope, they’re selling you survival, and if they get cavalier with your odds, the lawsuits come and their numbers show it. The Society of Thoracic Surgeons runs a registry covering around 95% of adult heart surgery in the US, risk-adjusts the outcomes, and publishes star ratings you can actually look up before you let someone near your chest. Clear, legally required reporting with real consequences. Wonderful.

Now let’s go back to IVF .The Fertility Clinic Success Rate and Certification Act of 1992 mandates that all ART clinics report pregnancy success rate data to the CDC. However, there is no penalty for non-participation. 33 clinics still in operation didn’t comply with reporting requirements last year, and 39 of 453 had no accreditation at all. The numbers that do get filed with the CDC are often cherry-picked by reporting only for patients with a higher chance of conception. And nobody, anywhere, is risk-adjusting (or age-adjusting) and rating clinics on how well they actually perform. It’s an industry left to regulate itself, with guidelines it can take or leave.

Other areas of medicine regularly say “no”. Fertility says “let’s keep trying, here’s the invoice”.

And where outcomes and practices aren’t tracked, doctors can do whatever they want. One REI in the article, who specialises in treating women in their late 40s, asks: “Can you imagine any other field of medicine where we refuse treatment just because you have a poor prognosis? [...] That would be crazy.”

Ehm, would it?!

I can think of plenty of fields of medicine that turn patients away when the prognosis is poor and the toll of treatment is too high for the odds on offer. Oncology. Organ transplant. Neurosurgery. I could go on, but you get my point. When a brutal treatment protocol has near-zero odds, every other area of medicine weighs the cost to your body and your life and says no, kindly but firmly. Only in fertility have doctors convinced themselves that putting us through hell for a 1% chance is good medicine.

Robert Klitzman at Columbia puts the odds plainly: out of a few hundred women trying with their own eggs at 46, one will take home a baby. One. You wouldn’t take those odds anywhere else in your life. The industry is counting on you taking them here.

“It’s a free country” is doing a lot of heavy lifting in the fertility world.

One paragraph in particular struck me as so outrageous, so unkind, so completely incompatible with a Hippocratic oath, well shit. I’ll just let you read it:

Eyvazzadeh says she’s honest with patients over 45 that trying to have a baby with their own eggs probably won’t work. But she doesn’t see any harm in letting them try. She recently froze the eggs of a 51-year-old, “who just wanted a chance to see what the experience was like.” But she’s also seen some women take it too far. “There’s this diagnosis I’ve come up with, the IVF addict,” she says. “There are these women and they’ve done like 20, 30 cycles, and they just won’t stop. [...] They’re basically just cycling until they don’t have eggs left [...].” Eyvazzadeh says her heart goes out to these women. “But you know, it’s a free country.”

It’s a free country? Are you effing kidding me? Where is the protection for the woman freezing her eggs at 51 just to see what it’s like, or the women on cycle 12, 14, 20? There is harm here. Real money, real bodies, real hearts and minds.

I’ve said it before and I’ll say it again: the science of IVF is incredible. It is truly magic, and it has helped create millions of families. The business practice around IVF is where the rot lives.

The IVF industry has what I call a hope problem. They sell it hard, and the people who pay the price are patients like you and me, who dare to believe the hope might be real, that it might happen for us, because someone in a white coat won’t say no.

Hope is as uplifting as it is cruel. Hold onto yours as you go on this journey, and don’t let anyone sell it back to you.

Take care of yourself this weekend.

Warmly,

Tess

Co-founder & CEO