Infertility affects some 7.4 million people in the U.S., but only 12% of them are estimated to have received treatment. In my practice, although I am seeing people who are ultimately able to access a fertility specialist, there are still many hardships in their journey, let alone people who never make it to my office.
It’s disheartening when people do not get treatment that might help them form a family. Many of the barriers relate to broader policy and structural issues but can be felt on an individual level. It’s also important to acknowledge that experiencing infertility and navigating treatment can take a toll on your mental health. That stress is not always acknowledged or well-supported by providers, despite it playing a big role.
Let’s explore some of the common challenges that keep people from getting the treatment they need.
Lack of information or awareness
One of the biggest challenges people face when they are in need of fertility treatment is, ironically, not knowing that they need treatment. Many people do not know which conditions can make it more difficult to conceive, when to seek fertility services, and what types of fertility treatments are available.
Many people also do not know that a woman’s age is the biggest predictor of the ability to conceive. This can be devastating, because any delay in seeking treatment can make those treatments much less likely to be successful. Although it sometimes feels like women are constantly reminded of their ticking biological clock, those conversations are happening only for some, and even in those situations, very few specifics are given.
Infertility is also (incorrectly) represented as affecting primarily white populations, and consequently fertility treatments are disproportionately targeted to this group. Women of color, especially Black women, are portrayed to be hyper-fertile, and so infertility is not often recognized in these groups. Many fertility practices have recognized this and are starting to include more people of color in their advertisements, but infertility is still primarily seen as a disease that affects white, affluent, cisgender women.
This means that those most likely to seek treatment are those who are already in the know, either because they got this information in school or through informal education, or have friends or family who were also in need of fertility services and were open about their journey. In an ideal world, everyone would be taught basic information about infertility.
Luckily, there are plenty of people working on making fertility services more widely available and accessible. In the meantime, creating an open dialogue with your physicians can be helpful for information gathering. Make sure to bring up your fertility plans and any concerns you may have to your primary care doctor, OB-GYN, and specialists for chronic medical conditions.
Lack of access
There is a huge shortage of reproductive endocrinology and infertility specialists (REIs). Currently, there are approximately 1,500 REIs across the country, and, as you can imagine, we are not evenly distributed. That means many places are left without an REI in the whole state, while others have multiple clinics with large REI groups.
In that sense, for many, “choosing” an REI practice is as simple as going to the only option near you. Similarly, if you are lucky enough to have health insurance that covers fertility treatments, you may find that these treatments are covered only at a particular clinic.
There’s also the ever-evolving reproductive rights landscape that may make accessing fertility treatment difficult in your state.
Financial cost
It is no secret that fertility treatments are expensive. Treatment ranges from a couple thousand dollars for intrauterine insemination (IUI) to tens of thousands of dollars for in vitro fertilization (IVF).
There is no federal mandate that health insurance cover fertility treatments — that is, if you are fortunate enough to have health insurance in the first place. But even if you live in one of the 19 states with mandated insurance coverage of fertility treatments, several restrictions may apply. For example, these mandates typically apply only to private insurance, so Medicaid is often excluded. Another example is that most insurance plans included in the mandate require a diagnosis of infertility, and, until recently, the definition of infertility used by the American Society for Reproductive Medicine (ASRM) did not include those in need of donor eggs or sperm.
All of this means that fertility treatment is typically an out-of-pocket expense for individuals or couples. On top of it all, there is no guarantee of success. Luckily, most insurance plans will at least cover the initial testing needed for a diagnosis, and there are fertility clinics that offer loans and payment plans. There are also several nonprofit organizations that offer financial assistance to those in need of fertility services. Your fertility clinic may have a financial counselor who can walk you through your options and help you figure out what your insurance may or may not cover.
Time commitment
Undergoing fertility treatments, especially IVF and egg freezing, requires a tremendous amount of time and flexibility in your schedule.
To start, although fertility clinics try to be accommodating, very few have evening hours. So to even begin your journey requires at least some time off from work to be evaluated. Much of the testing and certainly the treatments are done at a specific time in your menstrual cycle and are time-sensitive, again requiring time off work with relatively short notice. IVF has all these scheduling issues in spades, requiring visits to the doctor’s office every one to three days during the stimulation phase and as little as 36 hours’ notice before the final surgery to retrieve the eggs, which requires a whole day off work.
Even if taking time off work is technically possible for you, it often means disclosing fertility treatment to a work supervisor or colleagues, which may not feel comfortable for you. Because of all this, most of my patients who pursue IVF either work from home or take a medical leave of absence from work, which, again, may not be possible.
Unfortunately, there isn’t much here that you can control. If you happen to be in the position of negotiating a job offer, you can inquire about fertility coverage benefits and time-off accommodations for fertility treatment. Otherwise, it is a good idea to talk to your company’s HR department prior to starting fertility treatment to learn the specifics of how much time you are permitted to take off if necessary.
(If you live in New York, be sure to look into the state’s Paid Prenatal Leave program, which covers time away from work for fertility treatments or care appointments, including IVF.)
BMI cutoffs
Body mass index (BMI) cutoffs for fertility treatment have received a lot of publicity and are very controversial. Based on available evidence, the ASRM has said there is “no medical or ethical directive” to use BMI as a reason for denying a patient or couple access to infertility treatment, so if that is happening, you should feel free to ask your clinic if they can provide you with more information.
BMI is an approximation of body fat (a poor one) — a calculated measure of body weight in kilograms divided by height in meters squared — and is currently used in medicine to diagnose obesity.
Using BMI as a way to diagnose obesity has a number of problems. Still, many fertility clinics use BMI as a cutoff for IVF or egg freezing primarily because of the anesthesia required for egg retrieval. The concern is because many fertility clinics perform their egg retrievals in stand-alone surgical facilities, and the type of anesthesia used requires that patient be breathing on their own; if a patient were to have difficulty breathing during the retrieval and require intubation (the placement of a breathing tube), this may be difficult and dangerous, especially without extra equipment or personnel available.
Still, BMI cutoffs are not standardized or universal, and in many instances are decided upon by a multidisciplinary team and not at the discretion of the fertility provider alone. Some fertility clinics may have arrangements with hospitals or ambulatory surgery centers to perform egg retrievals in these settings, so you can inquire if that is an option for you. If not, ask your provider for a referral to nearby clinics that do not have such cutoffs.
The bottom line
- Many people are unaware of age-related fertility decline, conditions that cause infertility, and when to seek fertility services. Make sure to ask your primary care provider any questions you may have about fertility.
- Because fertility treatments are not covered by most insurance plans, many people end up paying out of pocket, and it can be an enormous expense. Many fertility clinics offer loans and payment plans that can help. There are also several nonprofit organizations that offer financial assistance.
- Fertility treatments often require time off work with relatively short notice. Decide if it makes sense to disclose your fertility journey to your supervisor, and talk to your HR department about what options exist for managing your appointments.
- BMI is sometimes used by fertility clinics for IVF and egg freezing, but there is not a universal cutoff and not all clinics use this. If your clinic uses a BMI cutoff that affects you, inquire if they are able to perform the egg retrieval in a hospital or surgery center or if they can refer you to a nearby clinic without a cutoff.
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