5 Things I learned working in fertility
The insider info you need to know, but don’t often hear about
I arrived late to the fertility party.
Medically speaking that is. In doctor’s offices, late— flatteringly known as advanced maternal age — is what you are once you hit your mid-thirties. Practically speaking, late is the new norm for a lot of women.
Despite this trend, the conversation around fertility continues to have big gaps. I know because, unlike a lot of women, I work at a biotech company focused on fertility.
And I’ve learned that there are important things people don’t know about their fertility and fertility medicine. Information that can make the difference between having a baby and not.
In my role leading product innovation at Celmatix, I collaborate with reproductive endocrinologists, bioinformaticians, and geneticists. I also talk to people about their fertility experiences and hear powerful stories like the ones shared by Tara Coomans, Aidan Madigan-Curtis, Kate Elazegui and Emily Kehe.
What’s missing from our conversation is the perspective that emerges when empathetic observer meets industry insider. An understanding of the crazy human experience that is fertility treatment and in-depth knowledge about what actually happens in doctor’s offices, insurance policies and beyond.
Fertility — infertility in particular — is still a taboo topic despite the fact that many of us are preoccupied by it for one reason or another, at one point or another. The other piece is that fertility medicine is behind the times.
Human-centered design and big data are redefining healthcare these days, but they are largely lagging in fertility care.
Case in point: many fertility clinics don’t use electronic medical records. For those clinics, records are mostly paper-based which means there is no rigorous way to learn from data on millions of IVF cycles. No way to tell what is working well and what’s not. It’s a missed opportunity that is only just starting to change.
So whether you are simply curious about your fertility, considering freezing your eggs, undergoing IVF, or somewhere in between, here’s what you need to know (and on what those on the inside already do).
1 — You are not an average.
It seems like there is just one number out there when it comes to female fertility — 35. The mythical age when your fertility suddenly goes from being just fine to precipitously endangered.
But 35 is an average and you are not an average, few people are. The average number of calories flashing on the elliptical is not an accurate reflection of your individual metabolism. Same is true about fertility.
What that 35 number does speak to is age-related decline in the number and quality of your eggs. It’s a real thing and many women believe the issues start closer to 40 which is part of the problem. However lots of things other than your biological clock can impact your fertility, positively and negatively.
For example, you could be 27 and genetically predisposed to early menopause. You could be 44 and going strong with your third pregnancy. You could be 31 with fertility issues related to polycystic ovary syndrome, but not be exhibiting the typical symptoms. You could be 36 and miscarrying without realizing it as the result of an undiagnosed, but treatable, blood clotting condition.
Our fertility is so much more nuanced than a one size fits all number. Unfortunately, our awareness and understanding of it is not.
Part of the problem is that, to date, fertility specialists relied on averages because few other metrics were available. There’s a ton of clinical information — hormone levels, ultrasounds, treatment outcomes — in medical records, but until recently no one had dug into the data to make it useful.
It’s high time that fertility medicine meets personalized medicine. Each one of us is unique and our fertility care should reflect this.
Ask your OBGYN how your hormone levels might be impacting your fertility. Ask your RE about your personalized likelihood of getting pregnant with different fertility treatments— and how they vary, not just as a function of your age, but also based on your initial workup and the clinic’s success rates. Lastly, keep an eye out for emerging genetic tests in the fertility space.
None of this is completely predictive yet, but there is more information out there about your unique fertility profile than you’re likely aware of.
2 — Don’t just find a good doctor. Find the best lab.
A great doctor can make all the difference, but the not-as-well-known fact is that their embryology laboratory often drives a lot of that difference.
When it comes to fertility treatment, I always assumed the doctor was the magician that mattered most. If you think about it though, your embryos are ‘clinically’ created. By an embryologist. In a lab. They are the other magician and that is where much of the reproductive magic happens.
To find that great lab, there are a few things you need to know.
The first is that data about the success rates of fertility clinics exists. The Society for Assisted Reproductive Technology collects and compiles them. It’s not a perfect indicator, mostly because the types of patients a clinic accepts can influence the statistics. But it’s still a good place to start because the quality of the embryology lab is a strong driver of clinic success rates.
The second is that because a high quality lab cost money, the clinics that have one tend to be larger and treat a greater number of patients. So as much as you might like the personal attention you get from your one doc clinic, it won’t always get you the best outcome.
Behind every good doctor is a great lab. You need both.
3 — IVF is a numbers game. Sort of.
People often think of their first try at IVF as their last shot at having a baby. Financial and personal reasons aside, they stop after one attempt because they assume that if IVF doesn’t work the first time, it won’t work at all. Crunching the numbers on IVF data tells a different story however.
For many women, their chances of having a baby with IVF increases, sometimes significantly, with additional rounds of treatment.
Research shows that of patients who stopped IVF after two treatment cycles about forty percent would have gotten pregnant with one more try.
This is incredible, hopeful, life-altering info for people trying to conceive with a little help from medicine. It’s heart-breaking to think that patients are discontinuing treatment when they still have a chance of getting pregnant. But from a human-centered lens, it is easy to understand why they come to that conclusion. Thankfully, the power of big data is in uncovering and debunking conventional thinking about clinical outcomes.
So as difficult as it may be to afford and persevere through treatment, this news means that you might need to think of IVF as the first step in your fertility journey, not the last.
4 — Insurance could get in your way of having a baby.
It’s no surprise that insurance companies are not universally loved. Usually this is for reasons involving a lack of coverage, but I was surprised to learn that even with insurance benefits, things might not be so rosy.
Say you start exploring fertility treatment and learn your insurance has infertility benefits. Or perhaps you live in one of the few states that mandates coverage —i.e. CT, IL, MA, MD, NJ. You realize you might not have to remortgage your home for a shot at parenthood and feel like you won the insurance lottery.
Not to be a Debbie Downer, but here’s the rub:
Insurance policies often require that patients first do the less expensive treatments like intrauterine insemination before they cover IVF. Sounds reasonable, but here’s why it’s not.
These policies ignore the fact that different fertility treatments don’t just tackle degrees of infertility. They tackle different types of infertility issues.
For example, insemination alone won’t work if you have severe endometriosis or eggs with genetic abnormalities.
You might have a condition that only IVF can solve, but insurance that requires you do six rounds of insemination before they will pay for IVF. While one insemination cycle technically takes a month, six cycles could actually take a year to complete because you might need breaks in between.
Breaks because your body is physically depleted from all the medications.
Breaks because you have a miscarriage, which is always emotionally difficult.
Breaks because you are a human being, not a vessel for medicine, and because life is more complicated than a clinical schedule might suggest.
When trying to conceive, time is precious. The months spent on treatments that won’t work can reduce your chances of success (sometimes quite dramatically depending on your diagnosis) with treatments that could work. Just because it’s covered by insurance doesn’t mean it’s what you should do. Let insurance be additive to your treatment path rather than allowing it to create the path itself.
5 — The patient experience needs love.
True for healthcare in general, right? But fertility faces some particularly sticky challenges when it comes to delivering a good patient experience.
Why? To start, it’s a lucrative, but not very competitive market which means few incentives for providers to make improvements. Add a serious dose of information asymmetry between patients and their doctors. And finally, patients who are physically, emotionally, and financially spent from time spend trying before they walk in the door. Last, but not least, the stakes are very different from most other healthcare experiences because they involve creating a new life. As Tara Coomans put it, “In this world, where your future, your dreams, are in the hands of these people, I am the Stepford patient”.
One instance of the patient experience getting attention these days is how care designed for heterosexual couples treats single women and same sex couples. For example, a single friend freezing her eggs received instructions from her clinic that included “having your husband ejaculate”. Newsflash — many women freezing their eggs are doing so because they don’t have a partner! This friend was livid that, for all the money and time she was investing, the clinic hadn’t created more sensitive and relevant instructions.
As patients, we need to band together and demand better. Treatment is crazy expensive, one could argue there are few things more important in life than the ability to create life, and hormone treatments can drive you crazy.
When it comes to banding together, there are resources like FertilityIQ — the Yelp of fertility clinics and doctors. Created by a couple who endured their own challenging fertility experience, it’s a useful tool for finding out which doctors have good bedside manner and sharing back with other patients. Episona, Inc. also has a useful guide on choosing a clinic.
When it comes to demanding better, make sure you understand what your larger fertility journey will look like. If you wait three years to freeze your eggs, what are the implications? If you want to have two or more children, what are the advantages of one treatment over another? Understand how your diagnostic results will impact your success with different treatment options before deciding on a treatment plan. It may seem obvious, but it’s often not how things are done.
Seeing the underbelly of fertility — the personal journeys, clinical care, and big data potential — opened my eyes to what exists, but isn’t widely known.
Namely that there is a ‘best option for you’ when it comes to fertility treatment, but it’s often complicated by insurance and fuzzy advice.
Women and men deserve to have more information, better information, and personalized information about their fertility. The good news is that a lot of it is already out there or emerging. The not-so-good news is that it’s often not readily available or shared. We can change this by talking openly about fertility, asking about our individual clinical metrics, and incorporating personalized medicine into treatment decisions.
