Overcoming Infertility’s Challenges & Risks with Davina Fankhauser

[: 00:00:30

Making matters worse is that these issues are surprisingly common. Although lots of people don't realize exactly what they're confronting in terms of the physical impediments to having children, they also receive a lot of fairly useless advice from well meaning but uninformed friends and relatives on how to overcome their challenges.

The ability to meet these challenges is often made worse by a somewhat unforgiving maze of health insurance practices that can lead those in need facing hundreds of thousands of dollars in medical costs. Our upcoming guest is here to provide some guidance for those facing these challenges, which can extend from identifying problems to finding a solution and covering the cost of treatments.

Keep listening.

Welcome to What we always consider the best part of our podcast is when we get to talk to an expert, an advocate, or somebody who's asking the right questions about a particular issue. And today we're talking about infertility issues in the U. S., but it's a worldwide situation and we have someone who can speak to both the issues on a large scale in a smaller scale, personal scale. And that is a Davina Fankhauser who is a co founder and executive director of fertility within reach. Davina welcome to the program.

[: 00:02:13

[00:02:16] John Salak: Great. Let's start off with is there a fertility crisis in the U. S.? Fertility rates seem to be down significantly at least that's what we're seeing.

[: 00:02:28

[00:02:50] John Salak: One of the things I wanted to sort of clarify the difference between fertility rates And infertility issues. Can you help us with that?

[: 00:02:59

[00:03:27] John Salak: 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. They're obviously related.

[: 00:03:41

are experiencing in the United States with the fertility rate decreasing, we are looking good to be able to sustain those future generations.

[: 00:04:40

And these, as you say, are enormous populations and in a decade or two, they're going to theoretically have a tough time with a smaller population sort of, supporting an older, population. infertility, Touches on challenges somebody who may want to have children Having and that's where your group steps in correct.

[: 00:05:15

My non profit switched the language to be fertility health care the different states can create their own definition of infertility. Not everyone with a fertility challenge is going to meet that definition of infertility.

For example one state may say the inability to conceive through natural intercourse for 12 months, right? 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 health care. So there is a difference between disease of infertility versus those who need fertility health care,

[: 00:06:21

[00:06:43] Davina Fankhauser: There iss a need for

Okay,

So, 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 for them to get. insurance coverage for their fertility treatment. But what we do need federally, and this is something I co authored a bill called the Hope for Fertility Services Act. And then I also helped teach the actuary companies how to actually Calculate that cost for offering the benefit. And when I submitted them my eight page report and they recalculated everything, it went down 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 health care,= which I think, in the long run, actually saves quite a bit. And that's what I point out at both the state level. at the federal level, because you can't just talk about how heartbreaking this disease is, because it is, but there's an economic burden to it, and it's not just to the patient. What happens is because infertility treatments or fertility healthcare treatments are so expensive, much all of those patients are using that healthcare deduction

[: 00:08:35

hmm. Mm

[: 00:08:45

[00:08:49] John Salak: hmm. Mm hmm.

[: 00:08:50

[00:08:54] John Salak: Nationally.

[: 00:08:55

[00:08:56] John Salak: What type of specific challenges do people face when they're dealing with infertility issues?

[: 00:09:01

Infertility is male factor. A third is female and a third is unknown. Or they just haven't been able to treat it.

[: 00:10:49

[00:10:57] Davina Fankhauser: Well, right now we're doing research on this, asking people, what did they learn about reproductive health? what did they learn about their own sex versus the other sex? What did they wish they had learned? Our results right now are really preliminary, but I can tell you that Most people don't realize that things that they are experiencing. even impact their fertility. when I was young and I was experiencing endometriosis symptoms of endometriosis. I had no idea until it was much later in my 20s and was told to try to have kids right away. So, but yet my symptoms started when I was in high school.

Think there are a lot of people That are having trouble conceiving, and they may talk to a friend or a member from their community and they're like, Oh, just relax.

You're stressed. You've got this going on. And so they're taking a long time before they even seek help. from a doctor and then if they do need help for diagnosis, they may not have the insurance for it or they think they don't have the insurance for it. I know before the Affordable Care Act, pretty much everyone didn't have insurance for it.

I know that was my experience. Any suspicion of infertility, I was automatically denied coverage by insurance because infertility was a factor that wouldn't be covered. And so I think that the delay the misinformation that's out there is much higher. And that's something we're trying to overcome.

[: 00:12:43

What are you recommending people to do? And what, and if they go to a doctor, are most primary care physicians equipped to get them in the right direction for infertility help?

[: 00:13:13

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 for additional. And if you're 35 or over, you try for six months before moving on to like a reproductive endocrinologist.

I think, when we said earlier that It could be a grandma that gives the uninformed advice. I had experienced myself multiple miscarriages and my OBGYN just kept saying, Oh, well, just the odds. You're getting pregnent like once a year and so it'll just happen for you. it, 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 that diagnostic blood test. So it's not just about if something feels off in your gut. trust that and

[: 00:14:30

[00:14:31] Davina Fankhauser: Something felt off to me with that advice.

It felt a little dismissive from the doctor I had. And I was right, but I didn't, it took me years to learn that.

[: 00:14:43

[00:14:58] Davina Fankhauser: yeah. They just said this is the odds. It'll happen.

[: 00:15:02

[00:15:09] Davina Fankhauser: , they felt that they specialized in infertility. And what that meant was they had taken a couple of classes of continuing ed. They felt like they knew, but in my experience that it wasn't what I needed. I need, I needed something more thorough.

[: 00:15:25

[00:15:38] Davina Fankhauser: it's really beyond words. words. Research shows somebody experiencing infertility for two or more years has the same level of stress as someone diagnosed with cancer. you are somebody who feels completely out of control of their body. the majority people, including myself, that we were to blame. We've done something wrong. Your faith whatever 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.

You question everything. And for me personally no surprise now because the research shows people who experience infertility, not just about the stress, but it's connected with depression, anxiety, PTSD.

[: 00:16:36

[00:16:37] Davina Fankhauser: And. can say in my experience, I had all three of those things during and even some after, you don't want to talk too much about it because there's this perception that infertility is this emotional issue, but it's not just emotional. There's so much the physical.

So the miscarriages, what I've come to realize is kind of like my body would go into labor. just earlier. all I wanted to do was have kids but there was so much anxiety become pregnant, right? And it can become consuming in your thoughts And what I have found is the people who love me the most would say the worst possible things because they didn't know what to say.

And so you've got your own emotional feelings about it. But then when you're hearing it from others, either things that are dismissive Or things that they don't mean to be hurtful, but are quite hurtful.

You try to push through every day. And I think that's why a lot of people. Who are infertile if they can't afford to try they may try once they may try twice, but then they just stop it is so hard when you get wrongfully denied by an insurance carrier to have Strength to try to fight them.

Most people don't And I think that's what the insurance counts on, but it's just, it's heartbreaking.

[: 00:18:23

[00:18:37] Davina Fankhauser: I think it's a mix. I think the stigma for men, they don't want to admit.

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 black and the Hispanic and Latin American communities, and even the South Asian communities, you are assumed that you able to conceive and conceive easily. And there's this societal assumption that they can get pregnant a lot. And it's just 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 So I think there's this societal bias, but I think there's also a medical bias and 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.

[: 00:20:41

[00:20:47] Davina Fankhauser: What I can tell you is I've seen a lot of research about this. One of the reasons we don't know as much as we do about infertility as there hasn't been a lot of funding for research. And I think we're starting to look at things more. There've been a lot of research regarding the benefits of CoQ10 enzyme and definitely nutrition.

I think they've looked a lot at environmental benefits. Factors and chemicals and the impact on fertility and to look at going organic versus doing some of the other foods. I think there's always a benefit to balance and a good nutritious diet, whether or not that has a specific impact in fertility rates. I think that's research that's going to be going on for a little while now.

[: 00:21:41

[00:21:48] Davina Fankhauser: There is, especially for females, the number of eggs that you produce declines as your age goes up. And that decline is only slight during certain age distances. So like 24 to 28, it declines a little bit. 28 to 32 it decline, but once you hit like 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. Like it it's that significant. So. The longer people wait, and it's understandable, you're waiting the right partner, or you're waiting because of your career, or you're waiting so you have money to access the care that you need the longer you wait, it could be that you need more Advanced treatments. And what I mean by that is like if you're younger and you're having some issues, you may be able to just 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 the IVF treatment in vitro fertilization. So sometimes the longer you wait, the more invasive the 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 lead to some health conditions their offspring.

[: 00:23:39

What's not covered? Why would there be challenges? On a base level, would people get their insurance package from work or whatever? Are infertility treatments or fertility treatments, however we're describing that, covered or where are they not covered? Where are the surprises?

[: 00:24:01

[00:24:54] John Salak: and this would be a requirement for the state for someone selling private insurance in that state to offer that coverage. How would something like that work? I understand that a state employee may be on a state health care plan that would offer it. But if I'm not picking on any state, just using Oklahoma, so in Oklahoma, the state will cover state employees with a health care plan that offers them treatment, or at least some level of treatment.

What about the private health care companies that are selling insurance in that state? Does the state determine what they have to offer?

[: 00:25:26

So right now, very few have the private insurance to have an IVF cycle or fertility treatment. So Massachusetts is one that does Illinois does, but very few states. Say the private insurance companies need to offer this benefit. And it is up to the other states if they want to have only the large group or the small group insurers. the plan. A lot of states just say the large group. And the thing is, every state gets to make their 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 a hundred employees, then it's a large group. And a state where I think it was Maine said it was a thousand employees. So, those large group employers had to offer the benefit, if that was the case, then only the employer with a thousand or more employees would have to, it's the same thing with small group.

But most states don't include the small group employers.

Are you familiar with ERISA?

[: 00:27:05

[00:27:06] Davina Fankhauser: Okay. So ERISA is a federal law that deals with like protecting businesses. And it says, if you're a small business if you are self insured, 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 group because we don't want to go against Orissa because the law says the state then has to pay for it

[: 00:27:40

[00:27:54] Davina Fankhauser: all the time,

It doesn't matter what laws passed in your state. matters is the insurance regulations that are established by the insurance department of the state or the division of insurance, whatever they want to call themselves. 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.

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. not have to necessarily reflect that.

What matters. 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. I always say to people never based moving on what the law is for infertility coverage. And even if you do have infertility coverage. mean you're going to be able to access it because the insurance company may say We don't think you qualify your BMI is too high or you have a history of smoking We're not going to cover you.

[: 00:29:45

[00:29:55] Davina Fankhauser: So I think what's most important is for people to figure out the first thing they do is usually they appeal with the insurance company, Or

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 you're a good investment, If they pay for, or, 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. So most insurers will deny

you, and then once you have that denial, you go to the next step and you appeal with the state, either 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. 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. is a fully insured company. A self insured company a company that we pay Aetna to manage all the benefits I pay for all of the health care expenses, not Aetna. that makes me self insured. self insured employers cannot be asked to do anything the division of insurance or the insurance department. They have no jurisdiction over this. 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.

[: 00:32:06

[00:32:13] Davina Fankhauser: So I encourage people to talk to their HR departments. I helped a woman once the insurance said no, but she talked to the HR and submitted information because they're self insured and they pay for all the benefits. they decided to pay for it.

that's who you can make your appeal to and share all the data with and, let them know, the need is and where you think it's unjust or what has happened. And then they can make the decision It does work. It just, Not all the time

[: 00:32:52

[00:32:55] Davina Fankhauser: of work, especially when you are and distraught and yeah.

[: 00:33:00

[00:33:06] Davina Fankhauser: So if you're looking at, again, 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 maybe one or two supply and demand, right?

It's going to be More expensive, where your only option, there's only one or two options. So I would say. And this doesn't include medication. So that's another thing. 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 recurrent miscarriage, they might do genetic testing on their embryos to find a genetically normal embryo to transfer. oh, it really can vary anywhere from, 15, 000 to 25, 000 per iVF.

Is it IVF and you need to do dealing 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, 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.

[: 00:34:49

[00:34:57] Davina Fankhauser: If you're having to rely on with a third party.

[: 00:35:03

[00:35:04] Davina Fankhauser: Somebody who doesn't have ovaries and they need to use 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 nonmedical essentials. But. You have to pay for psychological evaluations. You have to pay for health insurance for the gestational carrier. You have to pay out of pocket. Insurance is incredibly expensive right now.

So, so you have to cover all of that too.

[: 00:35:57

[00:36:07] Davina Fankhauser: I think this is a field where there's 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. And so I think the research is growing and happening and we're discovering more. And this is globally, this

. isn't just In. United States, and then there's looking at what the Europeans have found versus what the United States has found. And we're really trying to, I think, grow and develop to provide the best health care possible to patients. I think there's still a huge need for research and for basic understanding, especially unexplained infertility. But 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 Do a lot of research and the communication and outreach on culturally specific communities. We really 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.

Oh, I wish I had known this. more we can get out and educate and inform, the better we empower and help people make an informed decision.

[: 00:38:01

[00:38:10] Davina Fankhauser: Well, for me, been to work with and consult with actuary companies

And make sure they understand how this should be calculated. For example an insurance company may say this mandate's going to cost 25 per member per month. But what they do is they calculate the time of the treatment and then 18 months out, which includes prenatal postpartum.

It includes all of this that they add to the infertility premium, but they've already calculated that and they never Subtracted the infertile population. So they double count. Those premiums. And so when I'm able to communicate and get that message out and help people understand what the true cost is, then they're kind of like, okay, all right we're more aware, but that needs to happen more frequently.

And so I try to share all the data I find and the information. as many nonprofits as possible, because I can't help all of the seven plus million people in the U S by myself,

the more Of us working out there to collaborate and to make a difference that the sooner we're going to get what we all want, which is healthcare.

[: 00:39:46

[00:39:59] Davina Fankhauser: Absolutely, j ust my example is one. I had a miscarriage and they did a procedure called a D and E clean out the uterus and they did genetic testing to see why I miscarried, there was a medical cost to that. It was, they put me under. It was outpatient procedure so the anesthesia, the lab, the, this, the that, that 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 the thing about treating infertility is it can save with mental health. can actually help people like they have more loyal employees, Who stay with them.

So the cost of not treating the cost of not providing the benefit is dealing with one in six who are feeling and experiencing, emotional turmoil. If they've been experiencing infertility for more than two years, that's You're dealing with that on your staff. You're dealing with that in your other health benefits,

Are depressed or they're gaining weight or

not taking care of themselves. There are all

sorts of. Things that just add up

when when we can't take care of our core things.

And, and I do think of 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.

[: 00:42:03

[00:42:16] Davina Fankhauser: And we do, there is research that shows

that infertility in women and infertility in men, 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.

[: 00:42:41

[00:42:52] Davina Fankhauser: 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, better physical health. they Would have better relationships with employers and peers and friends and family,

and the world would be a better place. That's a very good. That's a very good point to leave this on. I want to thank you for all your insight and also telling us about your personal experiences too. So, that's really very helpful. Davina Fankhauser executive director of fraternity within reach.

Thank you so much for your time and your insights today. so much.

Thank you for having me.

[: 00:43:40

Just visit WellWillUSA. com, go to Milton's Discounts in the pull down menu, and you'll see the sign up sheet. Signing up takes just seconds, but the benefits can last for years.

Essentially, infertility is a larger and much more complex issue than many might expect. Its consequences will be also often extend into mental and physical challenges that go beyond the basic issue of having children. Thankfully, as our guest pointed out, progress is being made on the physical issues tied to infertility, as well as the related financial and health insurance challenges.

But those facing any issues can and should help themselves. And, now, here are some considerations. If you're under 35 and you've been having problems conceiving a child for 12 months, seek professional help. The same goes for those over 35 who've been trying for 6 months. Primary care physicians, or OB YGs, may be a good place to start, but don't stop there.

Fertility specialists are needed to map out a strategy to identify any physical issues and related treatments. Information is also critical, as it is in almost all matters. Work to become informed of what challenges you may be facing so you are better prepared to ask questions and understand options when you go for tests and treatments.

It's also essential to understand what your health insurance will and will not cover, and this is going to vary by state and policy type. Also understand that insurance denials can be fought, but it takes time and effort. Ultimately, don't go it alone. Seek professional help and emotional support.

Otherwise, the consequences can become overwhelming. Well, that's it for this episode of What the Health. We'd like to thank Davina Fankhauser of Fertility Within Reach for taking the time to speak to us and providing guidance for those dealing with fertility issues. Please visit FertilityWithinReach.org for more insights and information on these issues. That's FertilityWithinReach. org. Again, thanks for listening, and we hope you'll join us again soon on What the Health.

Share Episode

Shownotes

Transcripts

Follow

Links

Chapters

Video

More from YouTube