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Infertility coverage: Why I believe it

Infertility coverage: Why I believe it's a joke, why it matters, and why it’s time for a change

6 min read

1 in 7 couples are infertile, which means there is likely someone in your life who you care about who is, or will be, affected by this sucker punch statistic. It's a statistic that, although widely known, is often misunderstood.

My husband and I are part of that 1 in 7, and I’ll be incredibly honest with you when I say that I did not think this would happen to us. We worked hard at preventing pregnancy for ten years and are now working hard to achieve it, exhausting every resource available toward becoming parents.

As an active member of the infertility community, I see the emotional and financial agony that couples are burdened with on a daily basis while trying to conceive and it is apparent that there is a wide misconception of what mandated state coverage means regarding infertility. There is a belief that if a person lives in a state that provides coverage, treatments will be free. As someone who lives in one of these states and has paid out of pocket for everything, I can say without a doubt that this is not true.

The state decides if coverage should be mandated, but it is the insurance carriers who choose what that coverage will be, leaving many with infertility costs that are overwhelming, exponential and at times, impossible. For example, a carrier may choose to cover three IUI’s but offer no assistance when it comes to IVF.

It's not only the insurance coverage that varies greatly, but the range of fertility costs per city and provider. For example, treatment in NYC is estimated to be around $2,000 less than treatment in LA. The media is often quick to provide blanket numbers, resulting in not only a misconception among the infertility community but also among the general public as to what infertility patients are actually paying for treatment.

The reality is that out of pocket expenses are far more vast than commonly understood, for two reasons. The first is that most clinics charge a “package” price that acts as a baseline for assisted reproductive technologies (ARTs), including in vitro fertilization (IVF). This price does not include outsider provider fees (anesthesia, medications, preimplantation genetic diagnosis and screening) and circumstantial charges that may occur (intracytoplasmic sperm injection, additional embryos), typically ranging from $12k to $17k. These numbers refer to the base prices at the clinic, and reported numbers. My husband and I thought the total cost of IVF treatment would be around $17k — based on a pay chart given to us by our clinic. What we didn't realize initially, though, was that those numbers didn't include the extra charges mentioned above (anesthesia, egg storage, etc).

Second, infertility is commonly associated with IVF and IVF alone. People in general are seldom aware of all that precedes it. These treatments often times begin with a primary OB-GYN before a referral to a specialty clinic takes place. There, a number of tests will be conducted to try and troubleshoot the issue. These will include numerous blood panels, intrauterine ultrasounds, a referral to a sperm lab and/or urologist, and likely carrier screenings of both partners.

At that point, the OB-GYN might suggest that an intrauterine insemination (IUI) be done to get the ball rolling. I’ve realized IUI’s are kind of like the crowd warmers of infertility. They get the show started with lots of promise and no guarantee that it will be a success. The chances of conception with IUI are 5 - 15% per cycle, depending on how old you are and other factors, like the function of your fallopian tubes (at least one has to be open) and sperm count. This percentage just slightly above conceiving naturally, and the odds aren’t in the patient's favor. But like all first acts, they have to start somewhere.

My husband and I went through the ringer: OB-GYN appts, blood panels, ultrasounds, semen analysis, and carrier screenings. Then there were the three IUI’s, a miscarriage, and several trips to a urologist upon the discovery of varicoceles (that's an enlargement of the veins in the scrotum) on both testicles, before being sent to see a specialist.

So what did the above treatments mean financially for my husband and I? Let's take a look.

Total costs associated with year one of our infertility treatment:

Doctor visits (OB-GYN/Urologist - copays): $848

Carrier Screenings: $375

3 IUI’s: $1,430

Semen Analysis/Ultrasound: $405

Total: $3,058 (Yep, we met our $2,500 deductible.)

With a dent in our wallet and no more hope in our hearts, we began year two of treatment, which entailed a visit to a fertility clinic resulting in a strong recommendation to move forward with IVF. IVF looks like the end of the road for many people suffering, so to be asked to shortcut to it immediately felt like instant defeat. The success rates were high, but the numbers were intimidating, so like many patients in a financial pinch, we moved forward with our plan B.

Plan B was to try a fourth IUI and to correct the varicoceles on my husband’s right and left testicles which were impairing the semen’s morphology (shape), motility (movement) and overall count (i.e. proceed with a varicocelectomy). The cons of this surgery, aside from a husband’s crippling fear, are that it may take up to a year to see results. For those unfamiliar, a year in terms of trying to conceive might as well be a lifetime of waiting, because for many of us, the journey began long before the treatment did.

Additionally, I was put on a medication called levothyroxine to treat hypothyroidism (also known as an underactive thyroid), intended to lower the chances of recurrent miscarriage.

A few months after surgery and two months after our fourth failed IUI - which translates to: another two months of timed intercourse and negative pregnancy tests, it became apparent that we were ready for the big show. It was time for IVF.

Total costs associated with year two of our treatment:

Testing/Medications: $244

Varicocelectomy surgery: $5,500 (and counting)

IUI: $1,600

IVF: $29,651

Total: $36,995

Over the past 18 months, my husband and I have spent approximately $40,053 on fertility treatments, and although our IVF cycle was a successful one, we are very aware that this may not be the end for us. For some people this number may seem low, and that is the scary reality of this disease too many are fighting.

It’s deceptive to assume that couples are getting financial assistance based solely on the state in which they reside. It is misleading to those who have not been through it, and makes those who have feel helpless in an uphill battle.

So if your friend, sister, son, loved one has put their physical and mental energy into making a baby, the same thing other people can do so very easily, you can start to imagine why they are drained. Why they are tired of explaining what they have been through. Why getting the facts straight matters. They are spent in every sense of the word.

They are on a ride that won’t stop. It is a ride with many red and green lights. For now, we are stuck as passengers. Very soon there’s a chance we will have the opportunity to exit. Regardless of the outcome, we will never forget we rode it.

Infertility is unpredictable and promises nothing.

Infertility is not just another bill, it’s a series of them. It is a personal and financial investment in a prospective life. It’s time to rid ourselves of the misconception. To educate one another on what infertility costs actually entail. Without proper action, an understanding and change will never ensue.

So why is it that only 16 states are offering some kind of infertility assistance, and still at the discretion of the insurance carrier who provides it? It’s time for us to ban together, the fertile, the infertile and everyone in between, to demand that the government offer REAL assistance in the way that it is offered for many other aspects of women’s and men’s health. It’s time for all 50 states to aid couples trying to conceive - regardless of gender, sexual orientation or marital status.

It is simply not okay for 1 in 7 couples to be potentially hurled into debt - some debts higher than four years of college tuition - to achieve the family they desire. Infertility is not a choice. It is a disease (as we commonly define it in the infertility community).

It’s time we get it right.

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Amelia Freeman

Amelia Freeman is an Infertility Advocate sharing her experience while offering treatment advice & emotional support. You can find her at infertilityblows.com, ameliafreeman.com and @infertilityblows

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