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40 years later, IVF still not covered by insurance

EDITOR’S NOTE: Elissa Strauss writes about the politics and culture of parenthood as a contributor to CNN Health.

Before I began the process of in-vitro fertilization, I, quite foolishly, thpought of it as outsourcing. We can’t make a baby ourselves, so now these wonderful doctors are going to try to make one for us.

But believing that IVF is like outsourcing is like believing that one of those allegedly simple, do-it-yourself home renovation projects will really only take a couple of hours. Materials have be meticulously sourced, created and combined, and the smallest misstep can send you back to the very beginning of the process.

There are regular early morning visits to the doctor’s office, where blood is drawn and vaginal ultrasounds are administered — often by perfect strangers. There are giant boxes of syringes, needles, powders and diluents sent directly to your house, and you — who has never shot a needle into anyone before — are expected to mix, measure and self-administer these crucial and expensive drugs on a regular basis. There are numerous tests, procedures and highly anticipated early evening phone calls delivering the results.

This all makes for an awfully fraught experience, and even the highest probability of success is not enough to combat the vulnerability one feels when pumped full of hormones and a longing to conceive.

Then there’s the price tag. IVF costs, on average, roughly $20,000 a cycle and is not, in most cases, covered by insurance. For the vast majority of the infertile population, this means they either have to take on considerable debt or avoid receiving treatment and likely the chance to have children altogether.

A movement to expand insurance coverage for infertility treatment in the United States has taken off in recent years as a growing number of doctors and patients become frustrated with the high out-of-pocket costs and the way they hinder treatment. But in order to succeed, they must undo decades of misunderstanding and mischaracterization of infertility.

After 8 million births, IVF is not ‘experimental’

Forty years ago, Louise Joy Brown of Oldham in the United Kingdom became the first child to be born as a result of IVF. This means doctors surgically removed an egg from her mother and combined it with sperm from her father in a Petri dish.

For the next decade or so — while little Louise healthily grew up — the procedure was considered experimental, for obvious reasons. Insurance companies in the United States, which tend to steer clear of experimental medicine in general, stayed away from the enormous scientific breakthrough, said Dr. Richard J. Paulson, immediate past president of the American Society for Reproductive Medicine.

Paulson explained that some insurance companies still view it that way, even though 8 million babies have been born as a result of IVF around the world and they are just as healthy as the general population.

Another thing insurance companies have historically stayed away from: women’s bodies. Because infertility has long been considered a women’s health issue, insurance companies perceived it as a niche issue and denied coverage to those experiencing it. This is despite the fact that nearly half of all cases are due to “male factor infertility.”

Just 30 years ago, “most insurance companies didn’t even cover obstetrics [childbirth]. It was all out of pocket,” Paulson said.

While insurance companies have slowly broadened their coverage of other aspects of reproductive health, IVF coverage remains uncommon. Meanwhile, approximately 12% of American women have difficulty becoming pregnant or carrying a pregnancy to term, making infertility a condition roughly as common as diabetes.

IVF is not a lifestyle choice for rich, working women

Another common fallacy is that IVF is a rich person’s disease, the inevitable fate of a successful workaholic who put off having a family until it was too late. Their lifestyle choice shouldn’t be anyone’s responsibility but their own, the thinking goes, and they can probably afford it, anyway.

However, as Ann V. Bell points out in her book “Misconception,” studies have found that women of lower socioeconomic status have a harder time conceiving children than their wealthy counterparts. Yes, we don’t hear about them going through IVF — but that’s probably because they simply can’t afford it.

A 2015 paper from the American Society for Reproductive Medicine noted that low-income African-American and Hispanic patients are “underrepresented in the population of infertility patients.” When they do attain access to treatment, “they expeerience lower success rates compared with non-Hispanic white women.”

“There are still a lot of people who think we do IVF because we want to do IVF, that we are choosing to do IVF. But no little girl dreams of having babies via IVF,” said Barbara Collura, president and CEO of Resolve: the National Infertility Association.

The whole notion of IVF being expensive has more to do with the assumption that it is rich women’s thing than with the actual price tag. I just spent about $5,000 on a dental implant — that’s fixing a single tooth. The total cost for my infertility treatment was about $20,000 and included three surgical procedures, a lot of expensive medicine, genetic testing and routine monitoring for months. Out of that, I got a son.

When we stop thinking of IVF as a lifestyle option and start thinking of it as a cure for a medical condition that effects women from all socioeconomic backgrounds, IVF doesn’t seem particularly expensive at all.

Insurance is not just about postponing death but promoting well-being

Beneath these layers of sexism, economics and ignorance lie thornier concerns. Is having a baby a privilege or a right? Is “necessary” health care only about avoiding physical suffering or death? Or is it about the “right to health” and the ability to remedy the ways in which an individual body malfunctions?

There are many conditions that fall under this notion of the right to health for which insurance covers treatment and that we generally agree deserve treatment. Runners receive knee surgery so that they can continue running; breast cancer patients receive reconstructive breast surgery so that they can feel like themselves again; children born with hearing problems receive surgery to improve their hearing.

Yes, people could manage without these interventions, just like infertile people could manage without children. But should they have to? Infertility can lead to serious depression and anxiety, and the fallout can last a lifetime.

“I think of reproduction as a basic human right,” said Dr. Kara N. Goldman, assistant professor of reproductive endocrinology and infertility at New York University who has advocated for comprehensive infertility coverage in New York. “Patients should be able to have families, and we have the medical care to make that possible.”

Where the fight for coverage stands

Thankfully, the American health care system is starting to come around. In 2017, the American Medical Association declared infertility a disease. In the summary of the decision, the association expressed hope that the new designation would “promote insurance coverage and payment” and remove some of the stigma.

This shift was partially due to the lobbying by the American Society for Reproductive Medicine. In recent years, the society has made a strategic effort to ensure that more Americans have access to reproductive medicine.

“We all feel this way and realized it was time to put our efforts behind it,” said Paulson, the society’s past president. He explained that he and his fellow infertility doctors have become increasingly sensitive to the fact that much of the American population simply can’t afford infertility treatment.

There’s also a growing concern that, due to financial constraints, patients are making suboptimal decisions about treatment. They are choosing to transfer multiple embryos to the uterus at once, instead of the now-recommended single embryo transfer, in order to avoid paying for more procedures. This leads to a higher risk of complications for mother and child — and higher long-term health care costs for insurance companies.

Advocates from Resolve and the American Society for Reproductive Medicine hope that the American Medical Association’s designation will help them get states to pass laws mandating infertility coverage. Nine states require some degree of infertility coverage, some of which offer multiple rounds of IVF, while others only offer less expensive, and less effective, treatments.

The most recent state to pass a law was in Delaware, where infertility patient Christie Gross, with the help of Resolve, spearheaded support for one of the most comprehensive bills around. This includes coverage for infertility treatments, including IVF, as well as fertility preservation for cancer patients. Cancer treatment can leave one infertile, so this bill would give patients the option to store eggs, sperm or embryos beforehand.

“This has to be an effort that comes up from the grass roots. It has to come from patients,” Gross said. “It is extraordinarily exposing” to talk about infertility in public, but change will happen only when more people are “willing to be the face behind the issue.” Gross was going through infertility treatment herself while advocating for this law.

However, even if all 50 states passed similar laws, not everyone would be guaranteed infertility coverage. This is because state laws can mandate only workplaces with certain types of insurance — what’s known as fully insured health plans — to cover treatment. Only a federal mandate can require that everyone, no matter what type of insurance they have, receives infertility coverage. Such universal coverage is the norm in Europe.

Alongside these legislative battles, there are a rising number of individuals fighting for, and winning, infertility coverage in their workplaces. Employees are increasingly taking it upon themselves to explain to their employers how such coverage would boost morale, with only a minor impact on the bottom line.

These conversations are not always easy to have. For one, those who believe that life begins at conception aren’t always comfortable with the procedure because it tends to create embryos that go unused. Few anti-abortion politicians want to be the ones who come out against a family-building tool like IVF, but they don’t want to directly support it, either.

Also, many women diagnosed as infertile are still embarrassed or ashamed to share the news with family and friends. They’re responding to a stigma rooted in one of the oldest patriarchal tropes in the book: A woman’s worth lies in the fecundity of her womb. This has begun to change in recent years, as more and more women are going online and sharing their experiences. Still, we’ve yet to arrive at the flashpoint, when a critical mass of women realize that silence is ultimately more harmful than disclosure.

I’m one of the lucky ones. I had insurance coverage for IVF, and it led to the birth of my second child. Sometimes, when I look at him, I am reminded of this incredible fortune and the many people out there who can’t afford to make a bright-eyed, pudgy toddler of their own. This is a glaring injustice, the remedy for which exists in plain sight.