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Join RESOLVE’s leadership team for an in-depth look at what it takes to pass pro-family legislation, protect IVF, and what we’re up against.
HOSTS
President & CEO, Barb Collura
Chief Engagement Officer, Betsy Campbell
Chief External Affairs Officer, Rebecca Flick
ABOUT RESOLVE
RESOLVE: The National Infertility Association is the largest non-profit patient advocacy organization in the country focusing on increasing access to all family building options through insurance coverage and policy changes as well as protecting fertility care like IVF from legislation.
Hi, and welcome to Infertility Discourse, a podcast from RESOLVE, the National Infertility Association. I'm one of your hosts, Rebecca Flick.
Barb Collura:And I am Barb Collura.
Rebecca Flick:We are here to talk about the ever stimulating topic of insurance because that's what we want on this gloomy Friday morning here in Northern Virginia.
Barb Collura:Is this a a way to put people to sleep, Rebecca? Is this the podcast where we have the warning in front that says, have trouble sleeping? Put this podcast on.
Rebecca Flick:Exactly. Actually, though, I think it will be really helpful because this is one of the most asked questions we get at RESOLVE, whether it's through our general email inquiries or on our website or on social media. Why don't I have insurance? How do I get insurance? I have insurance, and I don't know what it means.
Barb Collura:Yeah. Oh my gosh. It's and and then people, you know, gee, I've had this amazing great insurance, and I've now realized that it doesn't cover anything that I'm doing, in terms of trying to build my family. What happened? How did this happen?
Barb Collura:Yeah. So, yeah, we get it all over the place. And then those convoluted, you know, big deductibles or, you know, there's some plans where there's a where there's a a set dollar amount. Anyway, I I hope that this helps people just figure out some ways to navigate it. And, maybe maybe, Rebecca, we're not giving everybody all the 20 ways to 20 steps to get it fully covered, but we're giving you, like, the first ten.
Barb Collura:Right? Sometimes it's just getting on your journey. It's getting started. It's like, okay. Oh, Barb.
Barb Collura:I tried that. And maybe I have another trick in my toolbox that I can tell you to try next. Right? So hopefully, this is, like, maybe steps 1 through 5 or 10, on your on your journey to get coverage.
Rebecca Flick:So most Americans get their health insurance through employer sponsored health care. That's the number one way. Correct?
Barb Collura:Well, yes. I mean, slightly less than 50%. I mean, there are there are, a lot of people who get their health insurance through the federal government, through Medicaid or Medicare, through CHIP. So I think that percentage is around 45% or so. So you've got a lot and then uninsured.
Barb Collura:So you are right. The majority, a little more than 50%, get their health insurance through, their employer.
Rebecca Flick:Well, I thought that was gonna be much higher, but you just proved why PR Week names you one of the top health influencers of 2024. Amazing. You just literally said that. No notes, people. I'm looking right at her, not a single note that popped out of your head.
Rebecca Flick:So that was awesome. I learned something.
Barb Collura:First of all, I was a little flipped out when I got well, actually, you told me. You got Google alert. And my kid who's 24, mom, what's a Google alert?
Rebecca Flick:Hey, Tony. Shout out to Tony.
Barb Collura:So our insurance as I like to say is very complicated in the United States and people who come here from other countries are, like, what? And then I get to speak to people outside the United States and oftentimes they ask me what's the deal in the US? Why isn't IVF covered? I don't get it. And I have to go, oh, god.
Barb Collura:And then I have to say, gosh. Our insurance is so complicated in the United States. So real briefly, there are, as Rebecca said, the majority of people in the United States get their health insurance to their employer. If they are not employed, they can get health insurance through Medicaid, through Medicare.
Barb Collura:There's a, a program for children, C-H-I-P or CHIP. And then, well, obviously, we have people in the country who are uninsured. And so that, quite honestly, has gotten smaller since Obamacare. The data really is amazing how many uninsured people have have become insured through Obamacare. But, or the Affordable Care Act.
Barb Collura:Or the Affordable Care Act. But but for, but there are still people who are uninsured. So this podcast today is really for those people who get their health insurance through their employer. We're gonna just make that really clear. We can leave Medicaid and Medicare for another day because I would love to talk about that.
Barb Collura:But right now, we're gonna talk about employer provided health insurance.
Rebecca Flick:So walk us through what happens, in 2 scenarios. 1, when a state introduces a mandate and it becomes law and then employers are mandated to provide coverage. So what happens with if you're in a state with a mandate and your employer is mandated to add coverage, what does that coverage usually look like? It it matches the law that passes. Correct?
Barb Collura:Right. So, when a state passes an insurance mandate and states do this for reasons that typically are the result of of things that are universally not covered by the health insurance plans offered by insurers. So we see this, believe it or not, years ago, I'll give you a great example. Home kits for testing your glucose if you have diabetes. Those actual kits that you use at home were not covered by insurance. And years ago, the American Diabetes Association said, wait a minute.
Barb Collura:We need to change that. So they tried through insurance companies and they wouldn't cover it. So they went state by state and they got in, like I I think it ended up being somewhere, like, 10 years maybe, but it was it was a lot. Maybe maybe even less than that in terms of years. But they got almost every state to pass an insurance mandate.
Rebecca Flick:Wow.
Barb Collura:Requiring insurers to cover the cost of those home glucose kits. We see it in prostate screening for prostate cancer. We see it in mental health. That really has made a big difference with advocacy. And we saw it with advocacy with breast cancer.
Barb Collura:So the coverage for mastectomies was done through advocacy and through a law. So there are a lot of reasons why a state legislature may say, you know what? We need to pass that insurance mandate in our state. And IVF has been one of those, those medical procedures that, has worked with getting insurance mandates passed. So the problem is the state legislatures only control certain insurance plans in their state.
Barb Collura:So they don't cover they don't control things like federal employees. They don't cover the military. They don't cover, and and in and in every state, there are people in the military and there are federal employees.
Rebecca Flick:Right.
Barb Collura:Nothing your state legislature can do will cover you. That has to be done by Congress. You also have different ways that insurance is delivered and most large companies. So just think of companies that maybe have 500, a 1000, and more employees. Generally, they are what's called self insured.
Barb Collura:And so they are covered by a department of labor law called ERISA. And here's the problem. Every single state mandate, all of those employers that are self insured, remember those are those big ones, they're exempt from the mandate. They don't have to they're they are by law, they do not have to adhere to a state mandate. So like I'm, you know, I'm from Minnesota.
Barb Collura:We've got big employers like Best Buy and 3M and unite believe it or not, UnitedHealthcare. And those companies are self insured. So even if we got a state mandate passed in Minnesota, those companies would be outside of the mandate. So who does a mandate cover? Well, it covers the employers that are are less usually less than that.
Barb Collura:And and those are companies that are called fully insured. So what happens with those companies and most of us I mean, I've always worked for companies that are fully insured. They go to the insurance company. They might go to Aetna and then the next year they switch to Cigna and then they get a better rate from United Healthcare and they are just taking whatever the insurer is giving them. The insurer says, here's your package of of items.
Barb Collura:There you go and it's gonna cost you this. So those are large employers. Those are small employers, and they're also individuals. And so the state legislatures can mandate insurance, but it only covers those fully insured plans. Right?
Barb Collura:And the individual small group and large group market. So now I say, "only". What percentage is that? It's probably probably around 65% of us who get our insurance through our employer. It's self insured.
Barb Collura:So 60 to 65%. So you're talking, you know, anywhere from 30 to 40% of people in a state would be covered under a mandate. And and then it gets even a little more complicated. But your question was, if the mandate says you have to cover this then, yeah, then those plans have to have to cover it.
Rebecca Flick:And it covers what how the law was written. And this is where we talk a lot about our model legislation is you should pass state x. You should pass this because it's going to be the best for the the patient. And we we talk a lot about what's best for the patient, but then we also you know, this podcast really kind of shows you the sausage making, which isn't always fun to have to, talk about. But sometimes through the legislative process, lawmakers wanna change what's best for the patient.
Rebecca Flick:Maybe not knowing. Maybe it's not intentionally to hurt the patient, but they're thinking about maybe cost or or, you know, what employers are gonna think about it. But it's our job as the patient advocacy group to really fight for the best legislation to pass and stay intact.
Barb Collura:I'll give you a great example of that. We, have been trying to get a state mandate passed in Washington state. And I recall, you know, bitter conversations with the legislators, on a particular committee and, you know, our model legislation says, you know, you're gonna cover 3 completed retrievals and unlimited embryo transfers and they wanted to go to, like, 2. Was it 3 or was it 2?
Barb Collura:Right? So you get into those detail conversations in, you know, maybe it was a health committee or something like that. But you're absolutely right. That is how how sometimes these conversations go. We had a crazy thing happen in Minnesota where they we had our model legislation and some legislators wanted more coverage.
Rebecca Flick:Oh, wow.
Barb Collura:They wanted it to cover the the Medicaid plan in the state and they wanted it to cover the state you you know, they wanted it to cover these folks and those folks. And, and then we got to another committee and they said, well, we can't pass this. It costs too much. And we were like, well, then go back to our model legislation. I mean, it was it was one of those things where you're kind of arguing with people on our side, but at the same time, these are the kinds of conversations that happen when you're trying, to pass this.
Barb Collura:And and to your point, it can get, you know, it can get where sometimes we just decide we're walking away. Right? It maybe has gotten so bad. The coverage will look so bad that, we don't want anything to pass. And I remember talking to, actually, Susan Crockin who if anyone's listening, she's like a a legal, you know, icon in our in our space.
Barb Collura:She worked very hard on getting the original Massachusetts IVF mandate passed. And they she was living in Massachusetts and Maryland had been the first state. And they were like, what? Maryland passed a mandate. And this is, you know, more than 30 years ago.
Barb Collura:And they worked with the state legislature, and you can imagine they were just so badly wanted the state mandate. And she said the coverage wasn't good and we walked away. And I was like, oh my god. She's like, we walked away and we say kill it. We are not supporting that.
Barb Collura:She goes, we came back the next year and got the best mandate in the country. So sometimes you have to play the long game in those situations. And, of course, as I always say, do no harm. You know, don't set a precedent. Don't put something in there that you're so excited to get something passed that you're, like, I don't care if it has those icky horrible poison pills in it.
Barb Collura:Well, guess what? People do care and and
Rebecca Flick:It's pretty hard to undo a lot.
Barb Collura:Oh my god. I always say to people and I I was at a briefing on Capitol Hill this week and we talked about this and I said, I I use the terms addition and subtraction. You can always add things to a law down the road. Subtracting, taking something out that has already passed.
Rebecca Flick:Wow.
Barb Collura:We see it with things like at the federal level, the Hyde Amendment and Dickie Wicker and things that, gosh, impossible to subtract. Right? Impossible to take away.
Rebecca Flick:This is when you, listener, need to write those terms down and Google them. We could probably do a whole episode on
Barb Collura:Let's do an episode on harm. Do no harm and talk about some of these things that passed that
Rebecca Flick:I'm sure I can find a great song that will go with that episode. Do no harm.
Barb Collura:But we're talking about insurance. So let's get back on track.
Rebecca Flick:Yes. So we've talked about...
Barb Collura:Since I'm the one that got us off track, you're like, don't yell at me. You did it.
Rebecca Flick:And and full disclosure, audience, we are 1 business, 2 business days away from our Night of Hope Gala. I'm, I'm I'm I'm working on a little bit of sleep, but we, are committed to this podcast and love doing this. So it's a it's a nice little distraction from Night of Hope.
Barb Collura:I got some some sleep even though we have a puppy in the house. So while you're at Night of Hope swimming in your brain, I just had the baby monitor waiting for the puppy to cry for me to get up in the middle of the night. Let her out. But it's working. Alright.
Barb Collura:So back to insurance.
Rebecca Flick:Well, let me just, we talked about how people in states with mandates get their insurance, but then they open the plan. And they have this new plan, and there's all these terms, deductible, diagnostic, testing. And, really, the bottom line is they wanna know when they walk into a fertility clinic and see a specialist, what does their coverage mean? How do they decipher that? What's the advice we can give them?
Barb Collura:Yeah. I mean, you know, I I always say you have that big, huge, you know, benefits plan and it's usually about a 100 pages and the font is like a point 6 or 6 font and it's on very thin paper. Everybody know what I'm talking about. Mhmm. And then you what I tell everyone go to the very back, start at the back and look at the list of exclusions.
Barb Collura:Just start there because it's so hard to decipher what is covered and start with the exclusions and see what it says about assisted reproductive technology, ART. What it says about IVF. What it says about intrauterine insemination, IUI. What does it say about medication? What does it say about diagnosis?
Barb Collura:What does it say about treatment? Let's get clear on what's excluded. Start at the end and work your way back. That's number 1. Number 2 is have your call your your insurance plan.
Barb Collura:They always say, remember, your plan document is the final. What you hear on the phone is it cannot, you know, is not necessarily correct.
Rebecca Flick:True.
Barb Collura:But at least call and get started with what is covered. Now that you know what's not covered, don't even try and work on the exclusions.
Barb Collura:Now you gotta find out, okay, I know what's not covered, what is covered, and start with that knowing that what the person's telling you on the phone may not be a 100% correct, but at least they give you some guidance. Now you're gonna go to your, if you're if you're needing care from a fertility doctor or even your OBGYN, they actually have a really good handle on a lot of the plans because they have other patients who work at the same companies or who have the same provider excuse me, the same payer. You know, I I talk to clinics all the time who are like, oh, yeah. We know exactly how that benefit's designed over at so and so company. So now you you're gonna work with your your provider and see what what they know and what you're gonna what you're gonna work on.
Barb Collura:I will tell you that in your back pocket is your HR department. So I have often had people feel as if something is absolutely covered. It's in the plan document. The the provider, your doctor is still saying, "Hey. They're denying this."
Barb Collura:And sometimes a simple call with your HR department can elicit some, response because guess what they're gonna do? They're gonna call their contact at the at the insurance company, and they're gonna say, I have an employee who is getting the runaround, and we'd like to get some answers. So, so always keep that in your in your back pocket. But, but those are some of the initial ways, Rebecca, to start to feel a little more informed about what is and isn't covered.
Rebecca Flick:What if, you're a patient and you go in for a consult? The doctor's not necessarily telling you what you have and and don't have in terms of coverage. Who is that at the IVF clinic?
Barb Collura:Well, they they generally have financial, you know, the the folks that work with the patients on their billing and payments. Absolutely, every person listening to this, if you are gonna walk into a fertility clinic, you need to be told what things cost. Because if you are going to be paying out of pocket, meaning you are not gonna get anything covered by health insurance, they have they need to tell you.
Barb Collura:Here's what the prices are for all of these different tests that we're gonna run on you. If you need IVF, here's what that cost can look like. We may discover you need genetic testing. What if it happens that you have a male factor infertility and we need to do something called ICSI? Here's what that's gonna cost.
Barb Collura:Absolutely ask. Every clinic should be prepared to give you that list of procedures and so forth for you who are going to be paying out of pocket. Now remember, that's not the cost to your insurance company if you have insurance. But start with, you know, as I like to say the sticker shock of what could be your out of pocket costs.
Rebecca Flick:Just I just had a a flashback to PTSD. Yeah. 17, 18 years ago, during my IVF treatment and realizing that the anesthesiologist at my fertility clinic was not part of our network. Right? So it's little little things like that. And so that's not the fault of the doctor. No. I know. I'm not blaming the clinic, but those little questions, it's your right to ask these questions.
Rebecca Flick:And if you're a practice manager or you work in the finance department of fertility clinic and you're listening to this, if you have a patient who is overwhelmed by the thought that they do not have insurance coverage, please send them to us. Please send them to resolve.org/coverageatwork because we have someone on our team who will hold their hand through asking for fertility benefits. And we've had 400 people this year alone download that kit, reach out and ask questions. Some even took that step and and met with, Sylvia on our team to get that coaching, and we are growing the the that coverage at work program year after year, and more people are using it. And if they walk out of your clinic not knowing about that, that's a shame because there there is help and we can help them.
Barb Collura:Yeah. So that's the first the first couple of things is just some of those tips on knowing what's excluded, how to decipher what is covered. It's gonna be hard. It's gonna be hard to to get a full accounting of every single thing that's covered, in my opinion, unless you your your employer has contracted with kind of one of these benefit provider companies and then it's probably gonna be really clear what is covered. So these are companies that just provide an IVF benefit and their clients are are are your employer.
Barb Collura:So what they do is they try and get companies to add an IVF benefit using their, their model and and their system and and their services. And then you as the employee probably have a pretty turnkey nice benefit that you can you know exactly what it is. And we see a lot of companies, big and small, using these, what I like to call them third party, but that's not really the term. But these benefit lend these benefit provider companies. Again, all these companies do is provide IVF benefits. So they're they're, we know a lot of them. We work with a lot of them, and they're they're really providing a great service. So now you, if I can, Rebecca, jump ahead. Now you've tried you've gone through something and it's gone through the insurance process and it was denied.
Barb Collura:And maybe it's something that you feel like, gosh. I really thought that one thing was maybe covered. Appeal it. Appeal. Appeal. Appeal.
Barb Collura:I have heard from more insurance company people than I would care to admit that there is a standard process where if something is just kinda out of the ordinary or or not exactly perfect when submitted, they deny it. And they expect you to just take it. They expect you to just go, oh, my insurance company said it was denied. Please appeal it.
Barb Collura:Please please please appeal it because it is worth it and we hear over and over that people get their claims covered in that process.
Rebecca Flick:That's good. Because it probably takes a lot too of emotional strength to do that too. You know? You're already already feeling a lot during this process, but no.
Rebecca Flick:No. You have rights.
Barb Collura:It's so frustrating. Yeah. It's so frustrating. Keep keep track of everything. Keep track of all your paperwork.
Barb Collura:One one one last area that I just wanna touch on well, two last areas I wanna touch on is your medications and and some little things to think about in managing that. And then if you've got a dollar cap benefit. This is pretty common today, Rebecca. We don't love them.
Rebecca Flick:No.
Barb Collura:But it does help people. It might be like, gee, your benefit is $10,000 lifetime for IVF. Maybe it's more. But, gosh, you're thinking I have an IVF benefit.
Barb Collura:This is great. And then you realize how quickly $10,000 goes. And so, just a couple things I would I would recommend is if you're in a dollar cap situation, make sure you know exactly what all the out of pocket costs are from your clinic so that, you you are prepared to figure out, okay, over and above the 10,000, what can I afford? The second thing is don't run your medications through that dollar cap benefit. Use that dollar cap benefit for all your medical costs.
Barb Collura:And here's why. You can work with different pharmacies. They're called specialty pharmacies. Most of them, in fact, I believe all of them have some kind of discount. And so you're gonna be paying out of pocket for your medications, but at a discount.
Barb Collura:And you can maximize your benefit and make it go farther. It's gonna be real hard to get a discount from your fertility doctor. I can I can tell you? But you can get a discount on the medications. So why not?
Barb Collura:Have pay for that out of out of your pocket and leave that $10,000 for your medical costs. Same goes for any other kind of drug benefit that you might have. You know, if if the medication is not covered by your insurance plan and you're gonna be forced to pay out of pocket, Before you fill that script, talk to your doctor and let them know. They might switch medications and switch you to a medication that you can get through a specialty pharmacy and can get a discount for. Or they're gonna tell you, hey, try this or that specialty pharmacy, because we know that that they have discounts.
Barb Collura:So this is something that is very, very common, but it's it's just not known. It's not we don't know that we can do that. But it's very very common in our space.
Rebecca Flick:That's good. And we have I'll put this in the show notes, a video on our website about accessing fertility medication benefits.
Barb Collura:We do?
Rebecca Flick:Yeah. You were in it.
Barb Collura:I don't remember anything that I did prior to, like, 3 months ago.
Rebecca Flick:You're gonna blackout after this.
Rebecca Flick:So you'll get this.
Barb Collura:Somebody posted on LinkedIn that I need to take a break. And I was like, is it something I said on LinkedIn? But I think they were just, aware of what we've been through this year and felt, some compassion for my personal well-being.
Rebecca Flick:Well it has been a year.
Barb Collura:Oh, that's awesome. So yeah. So there you go. I hope I hope some of these, some of these tips gets you a little deeper and farther into coverage. And Rebecca already said it.
Barb Collura:If you got nothing, call us. We got this amazing coverage at work program. Even if you've got one of those, like, $5,000 lifetime benefit.
Rebecca Flick:Yeah.
Barb Collura:Call us.
Rebecca Flick:Even better. Yes.
Barb Collura:Oh, my gosh. We will give you a lot of tools and resources to help advocate with your HR folks. And and we've got even some info for them. What that will show them why, yeah, we need a better benefit.
Rebecca Flick:And if you happen to be listening to this and you had a great insurance experience and you know your company could do better, maybe you change jobs and don't have insurance coverage at this new job, stand up for those that need a voice. Oh my gosh. And if you're in a state where we're gonna be going into in 2025, we'll be sending out those details soon, and you can help us with insurance mandates. Your positive insurance story will be very beneficial, when talking to lawmakers. So we will be talking about 2025 here shortly.
Rebecca Flick:But for now, we're gonna wrap this episode. Thanks for listening. Cover Me. Yep. Cover me, Bruce Springsteen and the E Street Band.
Rebecca Flick:This is a, this is a dedication to Sean Tipton at ASRM. Sean and I are both big Bruce Springsteen fans along with Lisa Levine, one of our, long time advocates in New York State. And so, head over to our Spotify Spotify playlist associated with this podcast for all of our songs. It's really fun. We listen to it often.
Rebecca Flick:Alright, everybody. Please take care of yourself. Visit resolve.org. And if you like this podcast and you like this series, please rate us, and don't forget to add us to your year end giving plans, resolve.org.