Lauren Citro, 32, has been trying to conceive for nearly six years.
Shes received fertility treatments at four clinics in three states.
In her effort to exhaust all options, shes sampled almost every intervention recommended: immunology testing, assisted hatching, supplements, acupuncture, intracytoplasmic sperm injection, testicular sperm extraction and the list goes on.
She trusted her doctorsand didnt want to drive herself crazy Googling things when fertility treatment is already a high-stress processbut the info she received from providers tended to be minimal and conflicting. Case in point: She went through whats known as an endometrial scratch that was described as highly recommended at her third clinic, only to find out it was entirely dismissed at a fourth place, because of the trauma it causes.
So Citro finally started doing some sleuthing online. Now, she asks a lot more questions. And as time goes on, and the more she hunts for evidence, the less shes willing to try different options. Our rationale used to be cant hurt, might help, Citro, a nurse in San Diego, says of the additional treatments she and her husband had during six IVF retrievals and four transfers (total cost: more than $100,000). But thats not necessarily the case. (She points to another example: a $7,000 testicular extraction of sperm that the results said had no impact on our outcome.)
About 10 percent of women in the U.S. struggle to conceive or stay pregnant, and nearly 2 percent of all births in the country are via in vitro fertilization (IVF), which costs upwards of $15,000. But beyond that, more than two-thirds of fertility clinic patients spend up to $10,000 per cycle on so-called optional extras or add-onsemerging techniques a clinic might offer on top of mainstream fertility treatment (i.e., IVF), supposedly to improve the odds even further and typically (almost always) for an additional cost. Add-ons, like the ones Citro tried, are rarely covered by insurancethough, in general, getting any part of your fertility treatment covered is still not the norm.
On some level, fertility treatment is like going to a Chinese restaurant and picking items from a dim sum cart, and it shouldnt be that way.
Many health-care providers are becoming increasingly worried that fertility extras come with costs far beyond monetary ones. Out of a group of routinely offered add-ons, 26 of 27 lacked rigorous, conclusive research to back their effectiveness for improving pregnancy or birth rates, found a recent investigation conducted by Oxford University and published in the British Medical Journal. Plus, the research IDd at least one of the procedures (preimplantation genetic screening, which well get to later) as potentially harmful.
On some level, fertility treatment is like going to a Chinese restaurant and picking items from a dim sum cart, and it shouldnt be that way, says Rachel Ashby, MD, an ob-gyn at Brigham and Womens Hospital Center for Infertility and Reproductive Surgery and an instructor at Harvard Medical School.
Piling on to the controversy is the fact that some experts believe there are flaws in the way U.S. fertility clinics are overseen. The U.S. requires fertility centers to report the basic details of each treatment cycleoutcomes, infertility diagnosis, number of embryos transferred, use of fresh or frozen embryos, donor or non-donor eggsto the Centers for Disease Control and Prevention (CDC) each year.
So in that sense, the industry is highly regulated. While that sounds like a positive fact, there is no penalty if a clinic doesnt report to the CDC; its simply listed as non-reporting.
The American Society for Reproductive Medicine (ASRM) also offers practice guidelines and opinions on how clinics should operate, including whether certain add-ons should be used on all patients, but businesses are not required to follow these either.
Many experts in the field say that for a lot of interventions, the science isnt there yet. That doesnt mean it will never advance, or that add-ons unanimously deserve a shady rap. But until we know whether an add-on works for a certain patient groupand whether the potential benefit outweighs the risksome believe they should be offered sparingly, with the science (and its flaws) and the pros and cons laid out clearly and deliberately for every single patient. Unfortunately, that doesnt always happen.
Whew, thats a lot to unpack. The data is messy and unfinished. Clinic regulation is loose. Yet women remain hopeful. And how could they not when faced with the opportunity to do everything in their power to start a family? WH goes deep
The debate is a minefield, starting with the word add-on itself. These treatments are generally unproven, yes. Still, many healthcare providers and patients are so insistent about the value that they bristle at the mere suggestion that add-ons are frivolous.
Deborah Anderson-Bialis, a founder of FertilityIQ, a website that provides independent analysis of clinics and doctors, points out that proponents would much prefer the phrase options for treatment to add-ons, because the latter has a negative connotation and implies theyre unnecessary. Some medical publications use the term adjuvants instead of add-ons.
This year, the United Kingdoms fertility regulatory agency began rating nearly a dozen add-ons with a traffic light system, with green reserved for procedures shown to be effective and safe by at least one good-quality randomized clinical trial (the gold standard of research). Not one has received a green rating yet. And if youre wondering, the U.S. has far less regulation than the U.K., which may stem from Congresss 1996 ban on the use of federal funds for research related to the creation of embryos.
Heres a snapshot of the points of contention:
The most commonly advocated add-on in recent years is preimplantation genetic testing for an abnormality called aneuploidy, or PGT-A. Its also one of the most expensive ($3,000 to $8,000, depending on where you live). Some practices, particularly in competitive markets like New York, recommend it (and sometimes insist on it) for 100 percent of patients, according to Norbert Gleicher, MD, founder of New Yorks Center for Human Reproduction. But there is so far no evidence that it increases live birth rates, which is why insurance doesnt cover it. The U.K.s watchdog group has given the screening a red-light rating, as it risks damaging fragile embryos by removing cells to test for these abnormalities. Meanwhile, an ASRM committee analyzed the available studies and concluded there was insufficient evidence to recommend the routine use.
But this is where things start to get complicatedlike, really complicated. Proponents of PGT-A will point out that theres a potential upside with PGT-A in women who have miscarried (aneuploidy is thought to be the biggest cause of miscarriages). And while PGT-A did not improve the live birth rate in all subjects, women over 38 who had PGT-A screening were found to have a better chance of achieving a live birth and were significantly less likely to have a miscarriage, possibly because they avoid being implanted with an embryo thats genetically abnormal from the get-go, found a study in Human Reproduction. This may be reason enough for some women to choose it. That all being said, the study authors note that it remains to be seen whether the benefits outweigh the drawbacks of cost and invasiveness.
This is a tool we can use to lessen our patients suffering and also give them some peace of mind that the pregnancy thats created is genetically normal, argues Catha Fischer, MD, an ob-gyn at Reproductive Medicine Associates of New Jersey. Two sides to every coin, in a sense.
Intracytoplasmic sperm injection (ICSI) is a common add-on.
This is when the single best-looking sperm (and it definitely is a beauty contest; its done by sight) is picked to be injected into the egg. (In conventional IVF, the egg is put in a petri dish with a bunch of sperm, and whichever one gets to it first is the winner.) For people who have no evidence of male-factor infertility, which is at least 50 percent of patients, the chances of getting pregnant are identical whether you pay the $1,000 to $2,500 for ICSI or not. Yet ICSI is being offered to people who arent, as doctors say, medically indicated for the issue. In fact, 66 percent of IVF cycles used ICSIand only 32 percent actually had male-factor infertility aloneper the latest CDC report.
Whats more, the British fertility regulatory authority warned that ICSI has slightly more risk than other fertility treatments; eggs may be damaged when theyre cleaned and injected with sperm. ICSI may also be associated with genetic and developmental disorders, though its not clear whether this is connected to the treatment itself or the infertility that prompted its use.
The add-on is so controversial that it has prompted experts to stand up and scream at each other at otherwise staid medical conferences, which Anderson-Bialis has witnessed. The method uses drugs to suppress the mothers immune system, based on the theory that her immune system goes out of control and mistakenly targets her pregnancy, possibly causing infertility, failed IVF, or miscarriage.
A little perspective here: Those are just a few examples of hot-button add-onsfrom a list of nearly 30. And not every supplemental fertility tool has such clear potential downsides. Most others just dont have verified positivesand cost a lot.
The yes mentality, explained
The fact that patients are embracing add-ons makes total sense: Youre determined to grow your family, and the fertility window is cracked open only so long, right? It can feel as if there simply isnt time to wait for conclusive research. And given the incredible expenses of fertility treatment, many women prefer to walk away knowing they gave it their absolute best shot.
We spent a lot of money because we wanted to feel like we did everything we could, says Citro, who notes that for months after her last cycle, it was difficult to talk about her long quest for parenthood without crying. Its an emotional roller coaster.
In these situations, many people are understandably searching for a sense of control, says psychologist Jessica Zucker, PhD, who specializes in womens reproductive and maternal mental health. When your body isnt doing what you wanted or expected it to do, all sorts of feelings can result from thisdisappointment most especially. But you have ownership over what youre willing to go through to try to conceive. So its a good idea to get familiar with your limits.
There is a mistaken notion that medical treatments are either futile or backed by large, well-controlled randomized studies."
These extras also glitter with a success halo. Its tempting to revel in positive stories in online communities and message boards and read into the content. But, says Dr. Ashby, anecdotes are two steps below voodoo in terms of value. There are more than 200you read that rightvariables that can impact an IVF cycle, according to Mandy Katz-Jaffe, PhD, scientific director of the fertility clinic network CCRM. So its not possible to pinpoint one single variable as responsible for the birth of a healthy baby.
However, when youre struggling with infertility, theres power and comfort in believing. Maybe Ill be the one person in 1,000 it works for, you imagine. Katie Coester, 37, of Washington, D.C., went to a clinic that didnt try to upsell, as she describes, and recommended only two add-ons: testing embryos for chromosome abnormality and endometrial scratching. (Her IVF was covered by insurance; the additions cost her some $2,000.) She also scoured message boards for possible ways to increase her odds, which is how she ended up doing acupuncture, watching funny movies (a small study done in Israel recommended laughter), and eating, er, pineapple core.
Coester had only one fallopian tube and was 31 when she started treatment. She had fairly quick successbut if she hadnt, she thinks she would have paid for anything and everything. You think, Ive come this far, says Coester, who is now a mother of two. Even with insurance coverage, we had to say, How far are we willing to push my body? What is the emotional toll were willing to take?
This brings us to the line the medical world is currently struggling to straddle: finding middle ground between forgoing ineffective and costly treatments and offering patients potentially helpful ones that just may not have a large randomized controlled trial behind them, says Zev Williams, MD, PhD, chief of reproductive endocrinology and infertility at the Columbia University Fertility Center.
There is a mistaken notion that medical treatments are either futile or backed by large, well-controlled randomized studies, says Dr. Williams. The reality is much more nuanced than thatthere is a large area in the middle where there is either preliminary or limited data showing benefit.
Karina Shreffler, PhD, a professor of human development and family science at Oklahoma State University, says the super-solid research studies are extremely expensive and difficult to secure funding for and also complicated to run. You need a large enough sample of diverse women receiving a specific kind of treatment (and a control group of similar women who dont receive the treatment). Even then, she says, youd be working within the challenge that only some women seek fertility treatment, and that theyre different from the women who dont (due to lack of finances, ethical reasons, and geography). So that poses additional considerations when it comes to interpreting the results.
Until the science catches up (if it does, that is), the Big Question remains: Why do clinics offer these treatments in infantile stages? First, many interventions in medicinenew cancer treatments, for instanceare instituted before theres a ton of research if there is even a slight inkling that they may help. Or, sadly, the more cynical take: Offering add-ons gives clinics a financial edge, many experts suggest. Because so few insurance companies pay for PGT-A, for example, private clinics and labs get the full fee, as opposed to insurance companies lower reimbursement rates, making the procedure a moneymaker for the fertility industry. These things are highly profitable, says Arthur Caplan, PhD, founding director of NYU Langones Division of Medical Ethics. Its We have desperate people here, and we can sell them anything.
If youre in the market for treatment, the bottom-line advice is to hitch your wagon to a health-care professional who is willing to take the time to educate youand to know you. If you meet with a doctor, and all youre getting is this is what you should do, then you need to find a new one, says Dr. Ashby. A praiseworthy provider will help you analyze and interpret conflicting fertility datawhich is tough to do as a laypersonand will also draw from their experience treating patients with cases similar to yours. (Dr. Fischer likes to tell patients, If youre thinking about Googling a question, just email me instead. I can shield you from worrying over misinformation or a misunderstanding.)
Grappling with infertility can suck the life out of you. But in the end, the best you can do is try to make an informed decision.
With all the new fertility and egg-freezing pop-ups, its critical to consider quality and experience over flashy marketing and trinkets. A doctors goal, always, should be to give every patient the very best chance of success and to practice patient-focused and evidence-based care, while also being transparent about the data behind medical recommendations, says Dr. Williams. More safeguarding suggestions: Consider a facility that is attached to a university, and seek out multiple opinions before green-lighting a procedure for yourself.
Citro, for one, needs a break from it allthe doctors, the studies, the clinics, the add-ons, the Googling. She hit pause for now but has not lost hope. After nearly six years of letting infertility dominate her life, she and her husband took a break from IVFand a vacation to Europe. We know well go back to treatment eventually, she says. We really hope that we end up with kids. Whatever happens, I want to look back and know that I made the very best decisions for me.
How to Prep for the Unknown Grappling with infertility can suck the life out of you. But in the end, the best you can do is try to make an informed decision. Go in with an investment plan of sorts (in your mind or on paper) that details what youre comfortable putting into the process monetarily and emotionally. Brainstorm in advance what youre willing to devote to thisthe money, the energy, the time off from work if you need, perhapsand what youre not, says psychologist Jessica Zucker, PhD. Maintain flexibility. Its okay if your expectations and limitations evolve or change over time. Try not to judge yourself at any stage of the process, she stresses. In the end, you got this, no matter what that means for you.
This article originally appeared in the October 2019 issue of Women's Health.
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