SART Fertility Experts - Infertility Advocacy and Government Affairs

The information and opinions expressed in this podcast do not necessarily reflect those of ASRM and SART. These podcasts are provided as a source of general information and are not a substitute for consultation with a physician. Welcome to SART Fertility Experts, a podcast that brings you discussions on important topics for people trying to build a family.

Our experts are members of SART, the Society for Assisted Reproductive Technology, an organization dedicated to ensuring you receive quality fertility care. Hello and welcome to the SART Fertility Experts podcast. I'm your host, Dr. Mark Trolice, and I am a board-certified reproductive endocrinologist in Winter Park, Florida, at Fertility Care, the IVF Center, where I am the director of that program.

I'm also professor at the University of Central Florida College of Medicine in Orlando. And today, I welcome a wonderful opportunity to speak about advocacy and government affairs with the expert of the American Society for Reproductive Medicine, Sean Tipton. He is the Chief Advocacy Policy and Development Officer, and he is our go-to guy for all issues of advocacy and government affairs.

Sean, welcome to the podcast. Well, thanks, Dr. Trolice. It's great to be here.

Oh, we are just so appreciative of you being with us. And I thought for today, we would talk about several issues to give a preview to the audience. One is, what's the landscape of infertility insurance coverage? What hurdles are there to obtain mandates for insurance coverage of infertility? And then what are things that we can do? What methods of advocacy are there? Okay, sound good? Sounds great.

Great. So, I was thinking, let's go back to the beginning, Sean. You know, we're talking about the early 1980s.

IVF was just being offered, okay? This is a brand new procedure. We know the first baby, Louise Brown, 1978 in the UK, and then 1981 in our country. So, obviously, new procedure, and it eventually becomes standard of care for infertility patients, obviously, with those without fallopian tubes initially, and then it expanded to many, many other indications.

So, what was the landscape then, Sean? Why were insurance carriers and employers reluctant to include it as a covered entity? Well, I think you have to look at sort of a broad historical context, first of all. And so, remember, and maybe not remember, maybe for a lot of people now doing IVF, they weren't alive for the first one now that Louise Brown is in her 40s. But I think it is important to understand just how controversial the advent of in vitro fertilization was.

I mean, if you go back and look at the media coverage at the time, it was hugely controversial. There had been sort of previous attempts that had ended because people didn't think it was an appropriate thing to do. And so, I think you have a couple things working in combination.

Number one, most medical advances, if they're really dramatic, terrify people at first. And so, whether it was heart transplants or anything else, there's a lot of fear. And so, people have to get comfortable with it and realize, okay, this is a good thing.

And I think when you put this, because it's sexuality and reproduction, that always makes people nervous. And, you know, we have to acknowledge that in the United States of America, we have a pretty terrible history when it comes to dealing with reproduction, sexual education, and reproductive medicine. So, you put all those things together, and it's not surprising that it was controversial, and people didn't want to cover anything that was appropriate to do.

As it became accepted, then you have this other huge factor that comes into play, and that is that private insurance companies want to make money. And so, a good way to make money if you're an insurance company is not to pay for medical care that people need. So, you have this, because this was in this kind of controversial area, they could get away with it.

They can never get away with denying, saying, we're not going to pay for insulin made from recombinant DNA for patients with diabetes, because everybody recognizes that you have to provide that care. And while the technique maybe was a little controversial at first, you get over it. But in the space of reproduction, it becomes real easy for people to say, we're not covering that.

And then you have to go to great efforts, like forcing them to legally, to get them to do the right thing, which is, I think, health insurance companies are supposed to be in the business of paying for people's health care when they're sick. From what I recall, and reading about this, when IVF came about, there was also religious concerns about, you know, were we playing God at that point? And I'm thinking that it was pretty much akin to when the birth control pill came out. There was a lot of controversy over the issues, and religiously was one of them as well.

So, you know, a lot of factors that were going against reproductive endocrinology and reproductive medicine at that time. So you brought about the insurance issue, and gosh, you know, I'm in Florida, and the worst part of my consultations with patients is when we start talking about the cost of this. You know, fertility is a physical, emotional, and financial investment.

And when you are not in a mandated state, Sean, the time that you spend over the cost issues and the heartbreak that people have to go through is just devastating, and it's just so unfair. But then let's talk about it. I think it's cruel, and you know, but I think the policies that are especially cruel are the ones that pay for diagnostics, but not for treatment.

So it's like, we'll help you understand what you need, but when it comes to getting it, yeah, you're on your own. Carving out what they're going to cover, what they're not going to. No, I get it.

All right. So before we talk about the issues of insurance, okay, how is it possible that we know in 1998, the US Supreme Court stated that reproduction is a major life activity, and conditions that interfere with reproduction should be regarded as disabilities, as per the Americans with Disabilities Act of 1991. Let's fast forward now.

This is, that's 22 years ago, okay? All right, 98, 2008, 2018, we're in 2020. How is it possible that there is still a, what is it, about 16 states in this country have some verbiage about infertility coverage? Where is the justification, if you will, that insurance companies just say, you know, we're really not going to offer that to all the employers, or, and, or employers are not offering this to their employees. And then we'll go into, of course, how minimal it is for the per member, per month benefit to add infertility.

But how, what do you hear about, Sean, that, you know, you're in DC. It's, it's, it's obviously been shown to be a disease by the World Health Organization, by the American Medical Association, by the American Society for Reproductive Medicine. Where is the leg to stand on to say, you know, I just don't think it's really something that we need, we need to cover? Well, I mean, it's hard to get into all the rationales that the insurance companies will lay, but, but it really, they really comes down to, they can get away with it.

And so they do. You know, they really, it's hard for me to imagine them saying, I know you have heart disease, but I'm not paying for your, your open heart surgery. But for some reason for infertility, they do.

And I think it goes back to the factors we talked about the very beginning in terms of the, the social stigma around the disease, and the, the, you know, people are uncomfortable talking about sex and reproduction. And so that allows them to get away with it. Now you opened this question talking about the Supreme Court case that said that, that infertility was a major life activity that should be covered.

The courts have never taken that next step and said, therefore you have to provide infertility therapy. It sure would be nice if they had done that, but we have not had success going that route yet. So, so we know you asked me to explain it.

I got to tell you, I can't explain it. Right. Right.

And, and studies have looked at this, of course, and we know that the, the per member per month cost on average is about a dollar 29. Okay. And the study that I've come across and we've gotten to know, of course, all of us, it's just mind boggling that this is, that this is something that we really have to fight for.

So there are different ways, different types of infertility laws. And I think it's important that our audience knows about that. There's laws to offer, right? The insurances are required to offer infertility benefits to employers, but the employers don't have to necessarily select that.

And then there's laws to cover. Right. And then, so, so, okay, now you have to cover infertility, but they may just cover infertility, but not in vitro fertilization treatment cycles.

And then of course, there's the mandates. So walk us a little bit through the, the thinking about how that's at all of benefit when you have laws to offer versus laws to cover and what kind of obstacles we're facing over that. Well, I mean, I'll say the mandates about laws to offer coverage are worthless because employers can always offer coverage if they want to.

So, so, so those are without value, frankly. Now the typical of the state mandates that we see read something along the lines of, if you are an employer and you provide health insurance coverage and that coverage includes obstetrical benefits, you have to also provide infertility benefits. And so I think that just got started as a way to sort of promote some equity in it.

And that, and that's really become an important model for There's one very, very important thing that I want to make sure people understand. And that is while we have had some success lately and we'll continue to pursue state laws, there is a federal law on the books that means all of these state mandates have enormous loopholes in them. So when we pass a law, for example, there's an Illinois has a nice mandate, but if you work for a large multi-state employer, the chances are that you are not covered by that law.

So if you work for a Walmart or a Ford motor company or an Apple or somebody like that, there's a federal law that protects those companies from these state mandates. So in general, in general, all different types of state mandates are just infertility. No, no.

The federal law says that states cannot regulate state insurance companies, state insurance commissioners and departments can't regulate the health insurance offerings and retirement offerings of these big multi-state companies. So, I mean, you can see some logic to it. If you, if you own Walmart, you don't want to have to devise an insurance plan that meets 50 different state standards.

So, and it really started as a retirement insurance thing, but, but it's a very important piece of policy to understand now. So that means, you know, something like a third or up to 40% of most states are exempt automatically because of the, it's called the ERISA law in the federal. Wow.

I mean, so, so what, so where are we now, Sean? I mean, what is, what is the challenge that, I know RESOLVE works on this and ASRM works on this. What are the challenge? And we're trying to do this in Florida, actually. What is the challenge that, that individual states then are having to be able to get mandated infertility coverage? And obviously we don't want to stop at infertility.

We want IVF, we want fertility preservation, we want LGBTQ, we want veterans. So where, what are the challenges that we're facing? Where are our obstacles? Well, I mean, you have to understand what I always say is the only people who oppose us when we're lobbying on these efforts are the Catholic church, the insurance industry, and the chamber of commerce. You know, those are some pretty potent political opponents that we have to deal with.

And we've had some success lately. I mean, so we've gotten a nice federal bill introduced, a federal bill, which would undo that loophole that I've just described. And, you know, it's not moving in the current environment, but we're about to have a nice election and maybe things will be different and we'll keep trying at that.

In the meantime, one of the nice things about the American system of government is if you're stymied at the federal level, you can go to states and try to do some things. And so since 2015, we have been involved in legislation that has now brought some kind of coverage to more than 36 million people in this country, one state at a time. So, you know, the most recent, I guess, was New Hampshire in 2019 and New York in 2019.

So we've had some nice victories that are very meaningful to the patients in those states. So we're getting better at it and we're working harder and the states are more open to these things now. So, so, so we're, so we started to have some success in the last couple of years.

I think the most important thing is people want to hear one thing from this podcast, it's talk to people about this problem. Talk to your friends, talk to your neighbors, most importantly, talk to your elected representatives. So show up at town halls and show up at campaign events and ask them to help.

You've got a problem. The First Amendment to the Constitution of the United States guarantees every citizen in this country the right to petition their government for redress of grievances. And if you've got infertility, you have a grievance.

We hope you're finding this episode of SART Fertility Experts helpful. Remember, for more information on this and related topics, visit www.sart.org and click on the tab labeled patients. And now back to SART Fertility Experts.

Doctors, Sean, part of the problem, I'm going to call out my colleagues right now and just bring that to the table. Are doctors doing enough to advocate for coverage? Is there some pushback from doctors? And also, what more can we do as a profession to get the coverage that infertility patients deserve? Well, I think patients and physicians together are really powerful advocates. And so it needs to involve both of those groups.

Obviously, patients are more sympathetic because nobody can see them as saying, oh, you're just trying to get rich. Now, there are some physicians who are fearful of insurance covers, put it that way. However, my experience in talking to our members all over the country, the people in mandated states, the practices in mandated states are very, very happy with their mandates.

There is no question that they see an increase in patient volume and they make that work for them financially. So there's a little bit of nervousness because if you get good at working in whatever environment you're in and you make it work for you and your patients, and people may not want to change that. But I literally have not heard from anyone in a state that has recently gotten a mandate who has said, oh, this is much worse for my patients.

I have not heard that from anybody. I hear about riders, you know, for patients to carve out infertility benefits, employers giving opportunities, or patients can potentially purchase riders that are not necessarily part of their mainstream insurance benefits. Could you speak a little bit about that to educate our audience? Well, I mean, I think the challenge from an insurance company point of view is you offer that and people will take it.

So the only people who would want that are people who know they're going to use it. So I think financially it's hard to make that model work. I mean, the whole concept of insurance is it's about spreading risk to everybody.

So when you particularly have a specific need, you don't have to shell out the money all at once. It's shared amongst the whole pool of people. And so I think those kind of specific riders don't seem to offer a great solution for people.

I do think in terms of, as I was saying, talk to people. The other important folks to be talking to are your employers and the HR departments and the companies you work for. There is no question that we have found that it is not that unusual for HR people to go, oh, I didn't even know we didn't offer that benefit.

Let's look into that. And then they look into it and they discover the point that you were making earlier, which is it's actually not that expensive a benefit to offer. Not that many people utilize it.

And if you spread that, the cost of that around is very good. And let me share one fact with people. You know, when you're dealing with health economists, people who specialize in kind of the business and economics of health care, one of the metrics they like to use are cost per additional year of life gained.

Right. So if you spend $70,000 on open heart surgery for a 75-year-old, that doesn't measure that well on that scale. Let me tell you what does measure and what's the best intervention you can do with that metric.

And that is in vitro fertilization, where you get 80 years of life, you know, for $15,000. Nothing can touch that. Right.

Right. Absolutely. I love that.

That's great. So let's talk about basic infertility. We have fertility preservation, LGBTQ and veterans.

Is there a path of least resistance? I mean, is there an order of being more accepting to start off with? Would you say that, you know, for the listeners in different states, would we say you'd want to start off with this one and then work your way? Or do you want to literally just throw everything together? Are some more acceptable to insurance carriers and state legislatures than others? Yeah, I mean, obviously, from a sort of socially accepted standpoint, the most sympathetic is a heterosexual woman married to a man who has some kind of disease and can't get pregnant. So that sounds like, oh, OK, I can I can get my head around that. The more variations of that there are, the sometimes the more the less sympathetic some people will be.

And that's just so there are certainly people in this world who don't think single people should have kids or don't think people in same sex marriages should have kids or don't think disabled people should have kids. All those become additional obstacles and hurdles that have to be met. Now, at the federal level, I've been working in health policy in Washington, D.C. for a long time, and I know a lot of people.

And it's funny when I talk to my colleagues who are also doing health policy stuff, they're like, I tell them we're working on this bill to make sure that veterans can have access to IVF care through the VA. And they're like, well, how hard can that be? Of course we should provide that. That has run into considerable political opposition, believe it or not.

I mean, I think it's unconscionable, but it's true to get the very narrow coverage which now exists for veterans through the VA system. We have had to work hard, really hard over a sustained period of time. And we're not done yet because it's not as broad as it should be.

But but I mean, at every level, you're running into opposition. So people have to keep hiring me. But, you know, yeah, it's just unspeakable.

I mean, our veterans are heroes and it's just it's just mind-boggling to think that there would even be some resistance over there. So we have the veterans. The fertility preservation for cancer patients should not be something very, very difficult for people to understand that these that these people are being faced with an emergency that thank God that the the treatments of cancer are allowing the victims to be surviving more.

And these survivors are now looking at fertility. But LGBTQ patients, I mean, just this month, now we're August 2020, right? The Health and Human Services are putting together or not putting together a law is going to be enacted where physicians will be legally protected to refuse, deny treatment to transgender patients for the simple reason that they don't want to. They could just say that they don't agree with that lifestyle or whatever have you or not give a reason.

It's, you know, to think that that people would ever discriminate based on any based on any lifestyle or for any other reasons. I mean, everybody deserves health care. And when you have a disease, as infertility is, there really shouldn't be much debate.

What's the outlook for mandating insurance coverage, Sean, in the U.S.? Well, as I said, since 2015, we started to build some momentum. And I think that, you know, every time we pass a bill in a state that starts, it puts more and more pressure on the states that have not done it yet. And, you know, talking about fertility preservation, there are some states where we recognize that getting IVF coverage is going to be tricky, getting IVF coverage for single folks and same-sex couples is going to be tricky.

And so in those states, we're going to say, let's go after fertility preservation. And so, you know, I'm a firm believer that politics is the art of the possible. So we are always going to go with what we can go with.

And just, you know, tactically, when you talked about, do you go for the whole enchilada or a little at a time? I mean, I always want to start with everything. And then if you have to peel stuff off to get something, we'll do that. But it's not where I like to start.

I mean, we like to make the case, you know, it really is a moral case that we make at the first outset, you know, this is, infertility is a disease, millions of people suffer from it. We can treat most of them. And so if you're doing things the right way, you offer those treatments.

You start from that premise. Yeah, studies have shown, of course, that less embryos are being transferred, less risk of multiple gestation, because patients don't have to do that desperation transfer. Well, this is my only chance I want to transfer two, three embryos, or maybe even more.

And what do we get from that? We get multiple gestation, risk of preterm labor, low birth weight, respiratory neurologic problems, even birth defects. So it does give some control and the ability to not have that desperate type of transfer and desperate treatment for the patient. And I would argue reducing anxiety in a patient when they know that they have opportunity, right? So, you know, just such a frustrating problem.

And I just could go on and on and on to talk with you, Sean, because you're such a tremendous resource for all of us in this area. And we thank you immensely over all of your hard work in helping our fertility patients gain the rightful coverage that they deserve. Well, it's something I deeply believe in.

And let me just say a couple kind of timely things, as we sit here and campaign season is the best time to talk. So you should show up at virtual, and there's probably going to be virtual town halls and things, but ask questions of candidates, ask them to support infertility patients. Make those requests while they're running, because they're going to be listening to you harder while they're running than they will once they're elected.

So you can help us help you by making those asks now, so that candidates who have heard the question, maybe who have taken a stance for us, and then when we go into these legislative sessions in 2021, we'll have, you know, be in better position to maybe move some of this legislation. And for patients, let me say, if you go to our patient website, reproductivefacts.org, right there on the front page is a point where you can send us your email address, so we can keep you informed of what's going on medically and from a policy standpoint. So go to reproductivefacts.org and fill in that box and give us your email address, and that way if something starts happening in your state, we will find you and put you to work.

You'll get a chance to be a citizen activist and exercise that First Amendment right to go petition the government for some redress of grievances and get some infertility coverage, maybe for you and maybe for the people who follow you. Fantastic suggestions, Sean. Thank you.

I hope everybody takes that advice to heart and address that. Reproductivefacts.org is not only that great site for advocacy, but also tremendous information there for all of you on the true facts for reproductive medical evidence-based approaches to your treatment. So, Sean, thank you so much.

My guest today in speaking about advocacy and government affairs was Sean Tipton. He is the chief advocacy, policy, and development officer for the American Society for Reproductive Medicine, and he is in Washington, D.C. I hope you all enjoyed this podcast. This was a tremendous value to me, and our wish is that we get a mandated infertility insurance coverage for you all.

So until next time, this is Dr. Mark Trolice. Take care. Thank you for listening to SART Fertility Experts, your resource for information on IVF.

If you found this podcast useful, please like us on your favorite social media platform and tell your friends about us. For more family-building resources, visit www.sart.org slash patient dash information or www.reproductivefacts.org.