8 Reasons Fertility Care Is Utterly Broken
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A shorter version of this piece was published in Fortune.
In Vitro Fertilization (IVF) has come a long way since the first IVF baby, Louise Joy Brown, was born in 1978. Thirty years ago, your chances of bringing home a baby with each IVF try was 5%. Today, that number is around one third. While this is an impressive improvement, the fact is, the majority of patients will not go home with a baby after an invasive, emotional, and expensive round of IVF. There’s still much progress to be made.
But it goes beyond IVF, which is out of reach for many people facing infertility. The entire fertility care system is broken. In the “Iron Triangle” of healthcare (access, cost, and quality), fertility care fails each point. It’s not accessible, it costs too much, and the treatment outcomes are dismal. Let’s dive in:
1. Treatment for infertility is seen as elective, forcing most patients to go into debt to have a baby
Something that’s uncomfortable to talk about is how much money I’ve spent to become a parent. I would not have a child if we didn’t have money — an uncomfortable truth that does not sit well with me.
Unlike care for other medical conditions, society sees infertility as elective, and thus, treatment is not universally covered by health insurance. My current plan has a lifetime max of $2,000, which doesn’t even cover the cost of the drug Lupron, which is often used in ovarian stimulation. Unfortunately, seventy percent of patients who undergo IVF go into debt and about 80% have hardly any or no coverage — not an ideal, low-stress way to start a pregnancy.
Not only does lack of health insurance coverage mean patients often have to pay out of pocket, but it also means we don’t benefit from lower rates that health plans typically negotiate. One Kaiser Family Foundation report found that the average out-of-pocket cost per successful outcome of IVF was $61,377. That’s the going rate to have a child when you can’t.
2. Usually, treatment doesn’t work
Did you know there’s a pill they prescribe you to help you get pregnant? Many patients start with the fertility treatment medications Clomid (Clomiphene citrate) or Femara (Letrozole). But the chances of a live birth from these drugs aren’t great; according to one study it’s just 23.3% for Clomid and 18.7% for Letrozole.
Once that fails, many move onto three or four cycles of intrauterine insemination (IUI), affectionately referred to by patients as the “turkey baster method.” But the chances of this working are even more dismal: across all patients undergoing IUI, the live birth rates per cycle are around five to 15%.
If IUI doesn’t work, and it doesn’t for most, you then move onto the big enchilada: IVF. If you can afford it. For IVF, the chances that the first egg retrieval and transfer will result in a live birth are discouraging:
- 38.4% for women under 35
- 29.3% for women 35–37
- 19.4% for women 38–40
- 9.9% for women 41–42
- 3.1% for women over 43
If you were going to buy anything else for over $20,000 and there was just over a 1 in 5 chance you’d actually receive it, would you spend the money?
3. There aren’t enough fertility specialists
If you have the money, and if you are okay with staggeringly low success rates, your hurdles still aren’t over. With under 500 clinics across the country, an estimated 18 million women of reproductive age live in locations without access. Though 1 in 8 women experience infertility, just 38% of American women with fertility problems, who hadn’t previously given birth to a live baby, ever used infertility services — presumably for many because they couldn’t access them.
There are simply not enough specialists to meet the growing demand for fertility treatments, resulting in long waitlists, inability to access care entirely, and unfulfilled dreams of a growing family. To compare, there are 7,142 active plastic surgeons in the US, but only 1,300 American Board of Obstetrics and Gynecology (ABOG) certified reproductive endocrinologists. In a field where every passing month and year matters, this shortage is failing many Americans.
4. There’s too much focus on the female
Due to century-old stigmas and misconceptions about infertility, too often the woman is the sole focus of fertility treatment despite the fact that equal numbers of males in infertile, hetero partnerships are the reason for infertility as females. A quick search on PubMed shows 8,731 articles for “female fertility” and just 5,567 for “male fertility” — an imbalance indicative of how many of us patients feel at the clinic.
The fact is, Reproductive Endocrinologists (REIs, aka fertility doctors) are trained OBGYNs first, as REI is a subspecialty in that field. Starting from this point, more of their training is focused on treating females, which may be why it seems some doctors are more inclined to treat the female first, before acknowledging the male’s role in the issue. Men need to be more considered in the process, as they are often not educated on how to participate, and are sometimes ignored entirely outside of obtaining a sperm sample.
At the same time, we need to push for more women’s voices in roles that matter within the fertility industry. For example, as of the writing of this piece, all of the US Fertility Board Members are men. This is the largest physician-owned, physician-led partnership of top fertility practices across the country. What does this say about women’s role in their own fertility? It’s still in the hands of men.
5. Racial inequalities persist
There is evidence that Black and Hispanic patients are much less likely to seek care than White patients, despite having higher rates of infertility. And for those who do seek care, they are often met with discrimination at the clinic. Some doctors brush off Black women’s concerns, assuming they can get pregnant easily. Doctors sometimes spend more time preaching contraception than conception tools, and even overstep to the point of talking people out of having children.
Like elsewhere in our healthcare system, the outcome disparities for Black patients are dismal and devastating. One study found that Black women had 33% lower chance of pregnancy and nearly double the miscarriage rates during IVF than White mothers. Additionally, early and meaningful education for Black women is a must, as is improved treatment times for those who experience a delay in treatments for uterine fibroids, and other conditions.
It’s a medically documented phenomenon that Black patients sometimes get more detailed and personalized care from Black doctors. But the shortage of Black doctors in the fertility space prevents patients couples from finding a doctor they trust, at times, as only five percent of all physicians are Black.
Researchers have concluded that extensive policy reform is a necessity to improve the fertility treatment process for everyone, and that it’s time to make actual changes — not just “highlight disparities.”
6. The heteronormative framing makes it harder for LGBTQ+ family building
LGBTQ+ parents face additional barriers in gaining coverage because the definitions often preclude them from qualifying. For example, some states mandate coverage for “iatrogenic infertility,” meaning infertility caused by a medical procedure like chemotherapy, but it’s unclear if they will “count” fertility caused by gender-affirming care that results in infertility.
Additionally, some states have IVF guidelines that mandate the couple’s own egg and sperm be used, which excludes same-sex couples. Legislation is still pending to ensure everyone has access to fertility care, and some of former President Donald Trump’s eliminated protections are being contested in the Supreme Court for discrimination.
7. It takes too long to diagnose major reproductive conditions
Many trying-to-conceive women have been told by a well-meaning aunt or stranger not to wait — “Your clock is ticking!” While it’s not ticking as quickly as once thought, time actually is of the essence.
Endometriosis, a condition of the uterus lining that 30% to 50% of infertile women experience, can take up to 10 years to diagnose. This sometimes happens because both patients and physicians write off symptoms as evidence of some other disease, or misdiagnose pain as simply “bad periods.”
Polycystic Ovary Syndrome (PCOS), the leading cause of infertility which causes the ovaries to produce abnormal levels of male sex hormones sometimes resulting in cysts, takes up to two years, and multiple doctors, to diagnose. This is time that trying-to-conceive parents don’t have.
Additionally, the standard of care is that for couples under 35, they are instructed to try to conceive every month for a year before seeing a doctor. If you are over 35, the timeline is shortened to six months. Though 92% and 82% respectively will conceive within one year, for the 8% and 18% who don’t, that can feel like a wasted year without answers.
8. We totally ignore the mental health toll
Couples going through infertility often call it the most trying time of their life. Research has shown that women with infertility have the same levels of anxiety and depression as women with cancer or HIV. Yet mental healthcare is not part of the treatment path. Ironically, a low-stress environment is the optimal condition to conceive and carry a healthy pregnancy, and research connects lowering levels with higher chances of pregnancy. Mental health care as a standard aspect of infertility treatment is missing.
Additionally, once a family has a baby, that trauma doesn’t always resolve automatically, and follow-up care can be necessary after months or years of infertility struggles. But this testing is reserved for postpartum mothers, and not all mothers who experienced loss, such as a first-trimester miscarriage, are screened for postpartum depression thoroughly.
It doesn’t have to be this way. Here’s a starting recipe for improving fertility care:
- Healthcare plans should cover fertility treatments like any other medical condition, enabling more people to receive care.
- We need more fertility fellowships to train a larger, more diverse group of REIs.
- We must invest more resources to further understand the role of male infertility in the equation.
- Funding for equitable care, including fertility clinics in fertility care deserts, could expand for increased access for all.
- Mental healthcare should be mandatorily offered alongside fertility treatments.
Most importantly, society including legislators, medical providers, family members, and employers must stand behind couples seeking fertility care however they can to make meaningful and lasting change.
