American families have been getting smaller for decades. There is no secret to this. A lot of this comes down to choice and the evolution of lifestyles and economics. The move to urban and suburban environments means many don’t need or want large families anymore. But there is more to this shift and it relates to the complex & growing problem of infertility. Millions of Americans now face medical issues, which make having children difficult if not impossible. The number, in fact, may be growing and this trend presents significant mental health and economic consequences for those involved as well as national economic impacts for the United States, which like many industrialized countries, continues to age. Davina Fankhauser of Fertility Within Reach recently spoke to WellWell about what these burdens mean to individuals as a nation as a whole—and what can and should be done to address them.
Is there a fertility crisis in the U.S.? Fertility rates seem to be down significantly.
It is down and the fertility rates continue to decrease. When I started in this field 20 years ago, it used to be one in 12. Then years later, it was one in eight. And right now globally, it’s one in six individuals experience infertility or have fertility challenges.
What is the difference between fertility rates and infertility issues?
Fertility is the number of children a woman will bear during her lifetime. And that has decreased. Families are smaller. And I think sometimes that gets mixed up with the issues of infertility. Infertility is the rate or the percentage of people who are experiencing the challenges of having children.
When I talk to legislators about the fertility rate, they understand that this can have an economic impact on society especially with social security. We rely on future generations to support and sustain us and the elderly in the future. Take Denmark. They used to have fertility benefits. Then they stopped giving fertility benefits nationally and saw what it did to their fertility rate and the inability to sustain the population. So, they brought back their national fertility health care. This is something we are experiencing in the United States with the fertility rate decreasing. We are not looking good to be able to sustain those future generations.
We were looking at the legislation that we used to see was for infertility treatment. My nonprofit switched the language to fertility health care because the different states can create their own definition of infertility. It becomes a challenge. For example, one state may say the inability to conceive through natural intercourse for 12 months. Well, somebody who is born without fallopian tubes or does not have a uterus should not meet that definition of infertility in order to receive fertility healthcare. So, there is a difference between n the disease of infertility versus those who need fertility healthcare.
When you’re talking about legislation, are you always dealing at the state versus the federal level?
There is a need for both. Right now, we have been working state by state. In the past, federally, what has gone through is benefits for veterans, who have been injured while in service, to get insurance coverage for their fertility treatment. I co-authored a bill called the Hope for Fertility Services Act and it helped teach the actuary companies how to calculate the cost of offering the benefit. And when I submitted my eight-page report and they recalculated everything, it went down $9 billion. And so, they think to be able to offer that fertility treatment nationally over the next 10 years, it’s going to be between 58 to 79 cents per member per month for the more than 7 million Americans to have access to this healthcare, which I think in the long run saves quite a bit. And that’s what I point out at both the state and the federal levels because you can’t just talk about how heartbreaking this disease is because it is, but there is an economic burden to it. Because infertility treatments or fertility healthcare treatments are so expensive, pretty much all of those patients are using that healthcare deduction from federal taxes. And if it was covered by insurance, they would not need to take that healthcare deduction. So, it would help the federal economy if there was insurance coverage for fertility treatment.
What specific challenges do people face when they’re dealing with infertility issues?
There can be female factor issues, like if a patient has endometriosis; polycystic ovarian syndrome if they have diminished ovarian reserve; if they have fibroids, which are like little tumors inside the uterus or if they have a blood clotting disorder, which can lead to miscarriage. If they have genetic disorders, it can lead to miscarriage. Males can also have male factor infertility. The thing about male factor infertility is if they see they have a low sperm count, they typically jump right to infertility treatment rather than trying to determine what’s the cause of the male factor infertility. Some of them have a missing vas deferens, which is the tube that takes the sperm from the testy and helps ejaculate it out. This is often associated with somebody who’s a carrier for cystic fibrosis. If somebody has a varicoseal, which is like a varicose vein, a collection of veins inside the testicle, that extra blood creates heat and can damage the sperm and the sperm count. So, there are a lot of different possible explanations.
What are you recommending people to do if they are trying to have kids and nothing is working?
If you’re a female, talk to an OBGYN. The GYN hopefully will go by the current recommendations from the American Society for Reproductive Medicine, which is if you’re under 35, you try for a year. And if you don’t achieve pregnancy, then you go on to a specialist. And if you’re 35 or over, you try for six months before moving on to a reproductive endocrinologist. I had experienced multiple miscarriages and my OBGYN just kept saying, well, it’s just the odds. You’re getting pregnant once a year and so it’ll just happen for you. It turned out I had a blood clotting disorder, which was always going to result in a miscarriage. But it took multiple pregnancies and miscarriages later to find that out because I couldn’t afford a diagnostic blood test. Something felt off to me with that advice. It felt a little dismissive from the doctor. So, if something feels off in your gut, trust that and follow up with that. It took me years to learn that.
What is the mental impact on somebody going through infertility issues?
It’s really beyond words. Research shows somebody experiencing infertility for two or more years has the same level of stress as someone diagnosed with cancer. You feel completely out of control of your body. The majority of people, including myself, felt that we were to blame, we’ve done something wrong. Your faith is questioned. Maybe I’m not meant to have kids. Maybe I don’t deserve to have kids. Maybe I’m not meant to be with my partner. Maybe we’re not meant to have kids together. Research shows people who experience infertility, it’s not just about the stress, but it’s connected with depression, anxiety and PTSD. And I can say in my experience, I had all three of those things during and even after. You don’t want to talk too much about it because there is this perception that infertility is an emotional issue, but it’s not just emotional. There’s so much that is physical. So, for me, the miscarriages, what I’ve come to realize is my body would go into labor just earlier. All I wanted to do was have kids, but there was so much anxiety about when I would become pregnant. And how long it was going to last. It can become consuming in your thoughts, I think that’s why a lot of people who are infertile and can’t afford to try, may try once, may try twice, but then they stop because the process is so hard. when you get wrongfully denied by an insurance carrier most people don’t have the strength to fight them. And I think that’s what the insurance counts on.
There is also a stigma for men; they don’t want to admit infertility. They’re the reason for infertility because that can imply something about their manhood or their ability to provide for their partner. And for women, there is this cultural assumption with certain populations that you should be able to get pregnant easily, especially non-Caucasian populations. In our research with the Black, Hispanic, Latin American communities and South Asian communities, you are assumed that you are able to conceive and conceive easily. And there’s this societal assumption that they can get pregnant a lot. And it’s just the opposite. And the success rates are even lower for minority communities than there are for Caucasians. And there’s also this medical bias. So, we’re not only seeing it with our friends and our peers and our family members, but even doctors have the assumption that people, the black community should be able to get pregnant easily and it’ll happen, or that you’re young, you’re a certain age and it should happen for you, just give it time. There’s this societal bias and a medical bias. I think medical schools are starting to do a better job because now, most of them have a medical humanities department and they’re trying to teach more about medical bias and about the realities of infertility. And so hopefully that’s going to start to balance out.
What is the impact of people waiting longer to have children?
There is a challenge for females the longer you wait to have children. The number of eggs that you produce declines as your age goes up. And that decline is only slight during certain age distances. 24 to 28, it declines a little bit. 28 to 32, it declines more. But once you hit 35, it’s a steeper decline. And that’s why at 35, you’ve been trying for six months, you should go see somebody right away. It’s that significant. And it’s understandable, you’re waiting for the right partner, or you’re waiting because of your career or you’re waiting so you have money to access care that you need. The longer you wait, could mean you need more advanced treatments. And what I mean by that is if you’re younger and you’re having some issues, you may be able to take some ovulation induction medication to help you ovulate. But if you’re waiting longer and you’re having fewer eggs or follicles, then you may need IVF treatment or in vitro fertilization. So sometimes the longer you wait, the more invasive care is needed. And then I would say for men, what we’re seeing is that there are some conditions that are linked with sperm that comes from older men. So, they may still be fertile but the quality of that sperm could lead to some health conditions in their offspring.
Why might there be challenges when employees receive their insurance package? Were there unexpected gaps in coverage?
With the Affordable Care Act, everybody can access diagnostic care. So, they can determine if they are experiencing infertility and what may be causing it. Not everyone has insurance coverage to treat fertility healthcare. That right now is at a state-by-state level. Every state is different because what they have decided to offer or cover people varies. For example, some states will provide it for their state employees, but not for the population of their state. We’ve seen that in North Dakota for example.
What about private healthcare companies that are selling insurance in that state?
The state determines which health plans have to offer. They determine if it’s private, if it’s the public, the large group, the small group or Medicaid. So right now, very few have the private insurance to have an IVF cycle or fertility treatment. Massachusetts and Illinois are the ones that do, but very few states say that private insurance companies need to offer this benefit. And it is up to the other states to have only the large group or the small group insurers offer the plan. A lot of states just say the large group. The thing is every state gets to make its own definition of what a large group and a small group plan is. So, some states will say a large group plan is if an employer has more than 100 employees, then it’s a large group. In a state, I think it was Maine, said it was 1,000 employees. So only those large group employers had to offer the benefit. If that were the case, then only the employer with a thousand or more employees would have to. It’s the same thing with small groups. But most states don’t include the small group employers.
ERISA is a federal law that deals with protecting businesses. And it says if you’re a small business or if you are self-insured, then you don’t have to follow a state mandate and you don’t have to offer this. So, a lot of the states will say, well, we’re only going to have it cover large groups because we don’t want to go against ERISA because the law says the state then has to pay for it.
People may have what they see as legitimate claims turned down. Is that still a general practice that you see a lot?
All the time, it doesn’t matter what laws are passed in your state. What matters is the insurance regulations that are established by the insurance department of the state or the division of insurance. They then take the law, create an interpretation and say to the insurance companies, this is what you’re allowed to do. This is what you’re not allowed to do. And so, when insurance companies are allowed to create their own criteria for patients to be eligible for treatment, then a lot of times they’re not even medically based. And so, they’re arbitrary and people are denied all the time, even though medically they fit the definition and they should be getting benefits or they follow the law but because the insurance policy does not have to necessarily reflect that, that’s what matters. There are people who sometimes go, I’m going to move to Massachusetts because they have health insurance for infertility. Well, first of all, subtract anybody or any employer protected by ERISA, anybody who’s self-insured, anybody who’s Medicaid. And if your employer’s not based in Massachusetts, they don’t follow the Massachusetts mandate. So, I always say to people, never base moving on what the law is for infertility coverage. And even if you do have infertility coverage, doesn’t mean you’re going to be able to access it because the insurance company may say, we don’t think you qualify. If your BMI is too high or you have a history of smoking, we’re not going to cover you.
What do people do if they’re denied coverage?
The first thing they do is usually appeal to the insurance company. Or they get a letter from their doctor to support that it was medically necessary. I tell them to find data about their condition and the odds of success if they have the treatment that they need and show that they’re a good investment if they pay for it. If you feel like they’re not following the law, give them a copy of the insurance regulation and a copy of the law. Supply as much information as possible. I think you have to remember though to appeal to the next step. Most insurers will deny you. And then once you have that denial, you go to the next step and you appeal with the state or the insurance department. You can file a complaint with them if they are a fully insured company. And people have to ask their employers about this because most people don’t. A fully insured company is, let’s say my company hires Blue Cross Blue Shield to not only manage all the benefits, but I have Blue Cross Blue Shield pay for all the benefits. That is a fully insured company. A self-insured company is a company that pays Aetna to manage all the benefits, but I pay for all of the healthcare expenses, not Aetna. So that makes me self-insured. Those self-insured employers cannot be asked to do anything by the Division of Insurance or the Insurance Department. They have no jurisdiction over this. So, once you are denied by your insurance carrier, you really have to find out if your employer is fully insured or self-insured to know whether you can go on and file a complaint with your insurance department.
What are the costs people would be facing if they had to cover infertility treatment?
This is going to depend on where you live because an IVF cycle in a state like Massachusetts, where there are six major fertility clinics versus somewhere where there’s a state where there’s maybe one or two, supply and demand, right? It’s going to be more expensive.
Male factor infertility also costs more than female factor sometimes because you have to do more work in the lab to help conception to take place. And then if somebody’s had a recurrent miscarriage, they might do genetic testing on their embryos to find a genetically normal embryo to transfer. It really can vary anywhere from $15,000 to $25,000 per IVF treatment.
Is it IVF and you need to deal with male factor infertility? Or is it a female factor where you need to do more medication? Because the medication is incredibly expensive. And there are some people who do like a natural IVF where they’re not doing medication and their success rates aren’t as high. And so, they may need to do that a couple of times. It’s going to be a lower cost, but it may take them more tries.
If you’re having to rely on IVF with a third party, which is somebody who doesn’t have ovaries and they need to use a donor egg or somebody who doesn’t have a uterus and they need to use a gestational carrier where it’s that person’s own egg, but the fertilized embryo goes into a gestational carrier, that is very expensive because they not only have to pay for the legal fees out of pocket, which we would never ask insurance to cover the legal fees and these other non-medical essentials, but you have to pay for psychological evaluations. You have to pay for the health insurance for the gestational carrier. You have to pay out of pocket out of pocket insurance, which is incredibly expensive right now.
What progress is being made to help people who are facing these issues? Have we seen a lot of progress?
This is a field where there is always progress happening, which is why I try to be very careful when I’m writing legislation because we can make it non-accurate too easily in future years. I think the research is growing and happening and we’re discovering more. And this is happening globally, this isn’t just in the United States. And then there’s looking at what the Europeans have found versus what the United States has found. And we’re trying to grow and develop to provide the best healthcare possible to patients. I think there’s still a huge need for research and basic understanding, especially unexplained infertility. I think what’s really key is the sooner patients can have more awareness, the less likely they’re going to need the invasive treatments. So that’s why we do a lot of research and communication and outreach on culturally specific communities. We try to get the information out there to the OBGYN offices. We did a brochure for adolescent oncology patients to help them learn about fertility preservation options because they just weren’t being provided that information. And just giving them a tool to better understand helps people feel empowered and to feel like they made a decision that they don’t have to live with regret. I wish I had known this. The more we can get out and educate and inform, the better we empower and help people make informed decisions.
Is there a financial cost for not addressing infertility issues earlier before they potentially turn into more serious problems?
Absolutely. I had a miscarriage and they did a procedure called a D & E to clean out the uterus and they did genetic testing to see why I miscarried. There was a medical cost to that. They put me under, the anesthesia, the lab, the this, the that. It was almost as much as if I had done an IVF cycle. And that doesn’t include the mental health benefits that I needed to utilize after experiencing another miscarriage. So, we know that there are cost savings. And the thing about treating infertility is it can save with mental health. It can actually help people, and employers, like they have happier, more global, loyal employees, who stay with them. The cost of not treating, the cost of not providing the benefit means you’re dealing with one in six who are feeling and experiencing emotional turmoil if they’ve been experiencing infertility for more than two years, you’re dealing with that on your staff. You’re dealing with that in your other health benefits. People are depressed or maybe they’re gaining weight or not taking care of themselves. There are all sorts of things that just add up when we can’t take care of our core things. And I do think of the reproductive system as a core thing. We learn about the cardiovascular system and the neurological system in schools, but we don’t learn about the reproductive system and when to go get help. That would make a huge difference.
There is research that shows that infertility in women and infertility in men, there is a link with even cardiovascular disease. So, if you’re not getting diagnosed, if you’re not treating these things, then you may be completely unaware that you have these other risk factors that you’re facing.
What is the biggest misconception addressing infertility issues?
That society can’t afford to cover people to have the healthcare they need. If that barrier was gone, people would be getting the healthcare they need. They would be in better mental health and better physical health. They would have better relationships with employers and peers and friends and family and the world would be a better place.
About Davina Fankhauser
Davina Fankhauser is the Co-Founder and Executive Director of Fertility Within Reach. A recognized expert on policies related to benefits for fertility treatment and preservation, Fankhauser advises patients and professionals on effectively communicating with insurers, employers and legislators to increase access to health benefits. Her evidence-based information is sought after at both patient and professional conferences.
Please visit Fertility Within Reach to learn more.
