It’s time for the healthcare industry to embrace the care pathways and benefit designs that support the best patient outcomes.
By Janet Choi, MD
Imagine you’ve just received an unexpected and concerning diagnosis from your physician. In addition to processing what it might mean for your future and quality of life, you’re worried about the cost and how much coverage – full or partial – your medical benefits will provide for potentially costly treatments. If your benefits don’t fully cover your needed treatments, how will you possibly afford it? And what impact will that have on your health goals and outcomes? Suddenly, an already difficult and uncertain medical journey becomes even more fraught.
This scenario, while fictional, portrays an all-too-common experience for the 1 in 6 individuals who want to have a child but are affected by infertility.
For far too long, infertility has been viewed and treated as if it’s a choice rather than the complex medical condition it is. From a young age it’s hammered into us how not to get pregnant, unintentionally perpetuating the myth that it must be easy for anyone to have a child when they decide to, regardless of age or underlying health issues. These misconceptions are only reinforced by the fact that infertility treatment is for most of us still an out-of-pocket elective expense rather than a covered benefit—as if it’s a nice-to-have rather than a medical need. Adding to this distorted view and compounding the problem are sensationalized headlines, politicization of the issue, and what is at times confusion around treatment options and new innovations, leaving couples to wonder which advice to follow and what is best for them.
As a reproductive endocrinologist and chief medical officer at a company focused on global women’s health and family building, I see it as my responsibility to dismantle such harmful misconceptions and outdated thinking so we can ensure every patient receives treatment tailored to their unique medical needs and family-building goals. Infertility is a complex medical condition that affects a significant proportion of our population—like diabetes, hypertension, and cardiovascular disease—and it deserves the same level of respect, investment, and individualized treatment as those other conditions.
Coverage that doesn’t cover: The damaging toll of arbitrary dollar caps
The consequences of treating infertility care as a choice add up, creating barriers for people everywhere and preventing many from realizing their dreams of a family. Miseducation inevitably leads to the sense of stigma and shame many experience with an infertility diagnosis, sometimes further delaying their access to care. Then there’s the substantial financial burden people face when there is no coverage at all. Shouldering the expense of non-covered infertility treatment—whether with intrauterine insemination (IUI), where the costs of failed treatments due to low success rates in older patient populations can quickly add up; or with IVF, where one non-covered cycle can cost a patient up to $30K out-of-pocket. In my years of practice, I’ve seen patients deplete their savings and retirement funds; take on second or third jobs; and turn to friends, family and even strangers via crowdfunding platforms in a desperate effort to self-fund their infertility treatment.
When coverage is available, it often comes in the form of outdated payment models that have repeatedly been shown to be ineffective in achieving optimal clinical and financial outcomes. Most common is the “dollar cap” approach, also known as the dollar maximum benefit. With this model, employers select and impose a standard, arbitrary dollar maximum on the amount of medical care and treatment an employee with infertility can access; far too often it is not even coordinated with the deductibles and out of pocket maximums of the rest of their medical coverage. This is an approach Progyny doesn’t use, and that wouldn’t be tolerated in any other area of healthcare.
When dollar caps were first introduced in infertility approximately 20 years ago, it was a well-intentioned first step in having benefit coverage. But the shortcomings of those early models were seen, and proven models that focus on outcomes are now available, though, not widely in use or standardized. I’ve often said that when I was in practice, well before I joined Progyny, I always knew which patients had Progyny benefits, the cycle-based design, because they came into the clinic feeling supported and with a calmer demeanor that enabled us to have a thoughtful conversation about their care options. By contrast, they were less panicked than those individuals who are at the mercy of a dollar cap benefit and preoccupied with the constant thrum of time and coverage running out. Patients in this latter scenario often will end up making budget-driven treatment decisions which are often not the best.
Take, for example, a young woman with several years of infertility and a history of one unsuccessful IVF treatment. Despite counseling by her physician about the risk of multiple pregnancies without a significant improvement in pregnancy chances, she chooses to transfer two embryos. While doctors are well aware of the real risks of multiple pregnancies—early and late pregnancy losses, preterm births with long NICU stays—a patient like this who is desperately trying to grow her family in the face of infertility might acknowledge the medical advice but push to continue treatment because her most immediate concern is getting pregnant before insurance runs out. Now her employer who’d been told they could offer fertility benefits and save money with a dollar cap benefit model is facing the much higher cost of covering NICU care for preterm twins or triplets.
Such cost caps can also inadvertently perpetuate health disparities based on income, race, sexual orientation and gender. Consider a Black couple affected by infertility where each parent has one gene for sickle cell anemia. They know there is a 1 in 4 risk of having a baby with sickle cell anemia, but because of limited insurance coverage and resources they decide to pursue traditional IVF without genetic screening. They end up conceiving a child with sickle cell anemia, a debilitating chronic disease with high morbidity and mortality rates and lifetime treatment costs of over $1.5M. This is unacceptable. The healthcare industry must do better.
Fortunately—and perhaps surprisingly, given the harmful persistence of the dollar cap—a better way has been available for nearly a decade.
Clearing pathways to clinical excellence and individualized care
If the prior examples paint a troubling picture of what can happen when infertility care is short-changed and compromised by outdated and arbitrary dollar caps, what does it look like when decision-making and treatment are driven instead by clinical best practice guidelines and treated as the highly complex condition that it is?
Well, for starters, it helps align everyone around the singular goal of ensuring the right care at the right time for each patient. Yes, patients and their employers must still weigh cost as a variable, but they can step out of crisis mode and the scarcity mindset that too often clouds decision-making. It becomes easier for doctors to partner with patients, advocate for their individual needs, and apply the best medical guidelines to their unique circumstances. This results in a care plan that meets the highest standard of clinical excellence and is tailored to individual needs—taking into account their medical history, current health status, family-building goals, and personal beliefs.
Following this elevated standard of care, individual treatment pathways end up looking very different. At Progyny, every fertility journey starts with education and support from our Patient Care Advocates (PCAs) who are trained to understand needs, address questions, and guide patients on to the right care at that moment. More than half of Progyny members who engage with our PCAs don’t move on to pursue treatment with a fertility clinic because they have had their health and family building needs met without formal medical treatment.
For the other 45% or so, pathways for medical intervention will vary considerably. For a 35-year-old woman with unexplained infertility with her husband who has no significant medical history, regular cycles, and prefers fewer interventions, IUI with oral fertility medication is an appropriate initial treatment path. For a 38-year-old woman with one year of infertility and a partner with low sperm count seeking to have two children, immediate IVF treatment to account for age and time as risk factors for prolonged infertility is likely to be recommended. As just these few examples show, it is only by taking in the full picture of an individual’s medical and family-building journey and supporting them through every step that we can deliver the best and most cost-effective outcomes.
It’s time to set a new global standard for outcomes-driven infertility care
Despite considerable global progress in advancing awareness and treatment of infertility, people with infertility are still facing more barriers than necessary because of outdated thinking and the resistance by some benefit plans to embrace and employ proven models. This is unacceptable for a medical condition affecting 1 in 6 people globally. Change must start with rethinking how we talk about and pay for infertility care—not as an elective or an arbitrarily dollar-capped benefit but as medically necessary support and intervention for a serious and highly individualized medical condition.
Now, let’s return to my opening scenario and address it the right way having proven our ability to make change happen. Let’s ensure that any patient receiving a diagnosis of infertility can feel comforted and confident knowing they will get nothing less than the best outcomes-driven treatment to match their unique needs and circumstances. It’s time we treat infertility as the complex medical condition it is and anchor clinical decision-making in the only objective that matters: getting every patient the right care at the right time for the best outcomes possible. It’s time for the healthcare industry to move forward, not backwards, on supporting family building access.