Infertility treatments are costly. Even with companies offering coverage, those trying to build families need to prepare for the financial obligations ahead. Barb Collura, the President/CEO of RESOLVE: The National Infertility Association, walks us through what you need to do to prepare.
What we Discuss
What RESOLVE does to support those building their families
Types of insurance coverage to support fertility treatments
How you can impact your company's coverage and State Mandates
Alternative ways to pay for the cost of fertility treatments
Transcript
Georgie Kovacs: What is RESOLVE?
Barb Collura RESOLVE: The National Infertility Association is what’s called a patient advocacy organization, and we operate as a nonprofit 501c3 charitable organization. We are here to take care of people who are struggling to build a family. It’s similar to Alzheimer's Association, American Diabetes Association, the American Heart Association, and American Cancer Society.
We focus on support groups and public awareness in the following ways.
Support Groups
Our founder, Barbara Eck, started RESOLVE around her kitchen table. We still, 40 some years later, have these support groups meeting every month. Pre COVID, we had 250 support groups that met every single month across the country. Since COVID hit we have a lot of those groups that have gone virtual and those hosts are still doing them. Our staff here at RESOLVE has added some national virtual support groups through Zoom, and we're doing those a couple times a month.
Public Awareness
We are very big and public awareness doing this podcast and talking to you and raising awareness, we talk to the media all the time. We also started something called National Infertility Awareness Week in 1989. And then it became a federally recognized health observance. So now every year, the last week of April, everybody is thinking about raising awareness about infertility.
Education and Information
We have a fantastic website with unbiased information to guide people on their family building journey.
Advocacy
Advocacy is everything from changing policies to finding your voice, learning how to really talk about infertility, raising your voice. We also encourage and provide support for people to do that.
Much has changed. In 2014, I remember telling a volunteer it is OK to not share your story if you feel uncomfortable, and today, we see incredible power in it. We need people to share. We need people to blog. We need people to tweet about it. We need people to share with their friends and family. If people aren't doing that, we're never going to get anywhere. That is why we find it so important to empower the community.
Georgie Kovacs
I completely agree with you. My journey was from 2010 to 2014. While I was open about it, I was not on social media. Instead, I’d notice that I would say one small thing to a person I was interacting with and realize this person was struggling with infertility or knew of someone who was. It helped me continue being open about my journey but with my career, I was still afraid to be on social media. And quite honestly, it was through these conversations, that I figured out how to resolve my own situation to finally be able to get pregnant.
Barb Collura: What a difference! I started at RESOLVE in 2004 and prior to that went through my own infertility journey. Where we've come today is just extraordinary. About 1989, RESOLVE started National Infertility Awareness Week, and I bet you they didn't get a media hit. I bet you there wasn't a single article. In 2019 or 2020 were really big years for National Infertility Awareness Week. We were on Good Morning America and the Today Show.
Georgie Kovacs: Today we wanted to cover financing infertility treatments. When I started my journey, my husband and I were chasing jobs to get coverage. We even debated on moving to Massachuessetts, which offered coverage. Even with insurance coverage, though, it was frustrating. There would be mandates within a given policy like “you must do three IUIs before you can do an IVF” even though medically everyone knew, and I knew, it was a waste of time. So here I went with my eggs aging, knowing that I had to do this treatment that didn't work in order to deal with insurance coverage.
Today, there's companies that help finance fertility treatments and work with coverage. RESOLVE is advocating for State mandates, and I had the pleasure of joining you in Washington DC and Albany to help advocate. This was actually quite therapeutic for my journey.
Let’s dive into insurance coverage first.
Barb Collura: There are several types of insurance and each impact whether infertility treatments are covered. They are provided by the government or private insured, which can be self or fully insured.
Provided by the Government
This applies to those in the military, veterans, and federal employees. Since this health insurance from the federal government, the only way to get IVF, fertility preservation and other things covered is to go to Congress and advocate for it. If we want the 9 million covered lives of our military, making the federal government the biggest employer in the country, to have access to IVF, and all the family building options, which they don't do now, we need to advocate going to Congress.
Private Insurance (Self Insured or Fully Insured)
This is the health insurance provided by your employer. Health insurance in this private market is delivered in two ways: self insured or fully insured.
Self Insured
Self insured are generally from larger companies or 1,000 or more employees, or sometimes 500 or more employees. Here, the company decides what their benefits are going to look like, regardless of the State mandate. It doesn't matter what State you live in or where the company is based. They don't have to follow any State mandate. The executives of that company are going to make decisions that best for that company, which means they're going to care what their employees say.
Fully Insured
These are companies that must follow State mandates. These companies, probably less than 500 employees, could still be considered a big company, but they're fully insured, and they have to take insurance that's provided in their State. As a result, those laws make a big difference because those State mandates for insurance companies that every single policy delivered in a given State has to have an infertility benefit that looks like [insert specific mandate].
We do have an ability in all three of those buckets to impact how coverage is delivered, but each one requires a different strategy, tactic, and message. At RESOLVE, we're trying to do all three, and this is where everybody's story comes into play. As it turns out, we all have the ability to impact each of those, and that's what's so amazing. And this is where I get goosebumps.
This is what the cool part of my job is. We get to hear people call us, email us, text us, whatever. They said, “Oh, my gosh. I just did what you guys have been asking me to do, and we saw this change happen.” We've had one employee at these big companies go and ask for IVF coverage, and they add it.
We, at RESOLVE, have to ensure that we have the tools and training to influence each of those three buckets.
Georgie Kovacs: What would you advise that women do to play their part in fertility coverage?
Barb Collura
If we're going to ask you to raise your voice and to make change happen, we better give you the tools, support, and training to do that. When we talk about going to your employer, we have a coverage at work program; we have a toolkit for employers and employees. If you as an employee want to make some change at your company, download the toolkit which has:
Talking points.
A sample letter that you can send anonymously.
Facts and figures along with data that you can bring to your HR folks.
White paper and infographics.
A staff person who can talk to you.
A Facebook group that you can join.
So you don't have to do all the research. You don't have to figure this all out. We've done it for you.
Okay, you had your meeting with HR. We ask how it went and support you in any other way you need. We're also connecting people with other folks in the country who've already done this. We have a lot of ways to support you, so that you're not left out there hanging.
If the employer wants more information because an employee asked for this, they can go to our website and download the employer toolkit. We've got some different resources there. We did a survey of employees and how they view their employer when they offer coverage versus when they don't offer coverage. Employers care about what their employees say and how they're viewing them as a family friendly place to work. So we're going to provide those facts and figures with the employer as well.
RESOLVE doesn't have the resources, financial or otherwise, to call up the C-suite of every company, Fortune 500 or other, in this country to do the advocacy work. What we're going to do is arm the employees. Some people are scared and they want to be anonymous, which it is when you talk to HR. Your boss doesn't need to know.
Georgie Kovacs: Let’s assume the employer and employee are motivated to discuss adding a fertility coverage benefit. So talk to us about that initial potential objection, which I assume is frequent, “coverage is expensive.”
Barb Collura: We look at data, which isn’t emotional. We have data from employers who've added this benefit. As part of that toolkit, there's a white paper which quotes several employers on their own experience. We're going to have more data coming out this Spring looking at the experience of hundreds of companies and what they have experienced in terms of costs.
You spoke about the State mandates that have passed in the last few years. Most States require some sort of cost study. So we've been getting all this what I would call free data where these States are having to pay for these cost studies. We've paid for some of them, but some of them are required by State governments. We have gotten some really fantastic data as well. The State of Massachusetts has had their infertility mandate for over 30 years. By law, every couple of years, the State has to do a cost analysis of all of its mandates. We have all of that data.
So what we've done is we've looked at all of this publicly available data. We've looked at the data we get in our own research. And it does not add significantly to any insurance coverage. We had one employer, I believe it's Black and Decker in Maryland, and they said that it was not even a rounding error. Adding this coverage was the right thing to do. And it absolutely did not increase our premiums. We have to get that word out. And we need people to feel comfortable when they are going and asking for this by providing real data.
Georgie Kovacs: Would you say that that is the case for smaller companies who are interested in providing fertility benefits as well? Or is it less of a rounding error?
Barb Collura: In smaller companies, chances are they're not going to be self-insured meaning they're going to be under a State mandate. So we have to design and advocate for really strong mandates that make sense and are effective for those employees.
One of the things that we've seen, and you live in New York, you may have experienced this, but it's sort of this push and pull where you have large companies who want to be leaders, like take the financial sector. They're competing with other banks. They need to attract talent. And so if they find out Bank of America, as an example, has really great infertility benefits, and they want to attract women, and they want to be family friendly, and they want to be competitive, Wells Fargo and all the other banks are going to have to step up.
Another thing we see is that when a State has a mandate, now you have part of the workforce that is used to this benefit. When people in that workforce go to look for other jobs, that's going to be a very important benefit to them. They may choose to go work for an employer in a competitive work environment because they have these benefits, because now they're in a mandated State, and they've worked for an employer that was required to cover it. So there's a lot of push and pull for them.
I would love to know what the tipping points are going to be. But it’s a slog that we're on right now. Every time we get a State to pass a mandate, it's going to raise the bar, even for those self-insured employers that aren't under the mandate, because now they're going to be seeing a quarter of the workforce or half of the workforce has access to this. I want to see it competitive.
Another couple of areas that we've seen, interestingly enough, are changes in academic institutions. We've seen universities, very competitive wanting to add this. They want to attract women who have their PhDs to teach, study, and research.
Then we've seen municipalities; like we've seen the cities of Pittsburgh and Portland, Oregon, as employers, again, self-insured. They have the police, the firemen, all the city employees, and they're adding this. And so it's really cool to see different industry sectors latch on to the importance of covering fertility benefits.
Georgie Kovacs: How often are you updating the statistics for fertility benefits coverage?
Barb Collura: We have a small staff of nine people. Every time we get a win, we want to add it to our totals. We want our website to be the most comprehensive and correct place where you can get this information. We post every State bill that impacts our field. We are the only place in the country and in the world where you can go and and see every single State bill. This isn't just IVF coverage. This could be personhood, or this could be a really bad bill, we're gonna post it and have a link to the bill. So we take that very seriously.
Georgie Kovacs: You're advocating for IVF coverage, surrogacy, as well as fertility preservation. And I just want to call that out because there's a lot of nuances here. We should definitely celebrate the changes in each of the States and each of the companies that are adding, but I think it's really important for those who are struggling with infertility and trying to figure out how to pay for it, to really understand what that coverage means. What are some watch outs or key things that people should look for? For example, it takes an average of 2.3 to 2.6 IVFs rounds to successfully get pregnant.
Barb Collura: Having said all that I've said about the State mandates and employers adding there's no I mean, they're all over the place in terms of what the coverage looks like. RESOLVE has a model benefit for employers. We also have model legislation.
But that doesn't always end up being what people get. While we start with recommending the best, and these are evidence-based benefits reviewed by physicians, attorneys, and others. However, that is not always how it ends up. So you're left with having to deal with what your employer might be offering or what a State mandate might look like.
Let's say your employer has a $10,000 or $20,000 cap. While this may seem generous, you and I both know that barely covers one and a half cycles even and so you run out.
If you are at an employer that has that dollar cap, you have an opportunity to try and get them to change that. We have data that shows why that is not a good benefit design, especially for infertility.
But there's also ways that you can maximize your benefits while you're still under a plan with a dollar cap. For example, maybe you don't get all your drugs through this plan and, instead, you get your drugs through a discount program through a specialty pharmacy, paying for it out of pocket, but at a much reduced price. You then use that $10,000 or $20,000 for all your medical costs.
When you're looking at a benefit design that has the number of cycles, you must make sure that you understand what a cycle is defined as. For example:
Are these fresh cycles?
Are these frozen cycles?
If I do a cycle, and it gets canceled, does that count as a cycle?
Is a cycle when I go through everything, including having embryos transferred?
So those are some questions to keep in mind.
When we talk about fertility preservation, RESOLVE is advocating for insurance coverage. Right now, we're advocating for insurance coverage for people that have a medical condition that's going to cause their infertility. So this is freezing eggs and sperm, maybe before a cancer treatment, endometriosis surgery, fibroids or anything else that may impact your reproductive system. We aim to allow for fertility preservation in advance and have that covered by insurance.
It is important to understand your benefits. If you are not clear, leverage your HR department.
Georgie Kovacs: How do third party payers play a role in infertility benefits and coverage?
Barb Collura: Infertility is not the only health condition where you see third party payers, but we do have certainly quite a few different companies. When I say third party payers, this is just a really awesome way for a company to get coverage if they're self-insured or fully insured.
Let's say you're self-insured, and you design your benefit, but you want to offer a really nice IVF benefit, so you might go to one of these third party payers. They are going to have counseling, coverage for medication, and a nurse on call. There are some States where the insurance that's provided - maybe it's a State that doesn't have a mandate - the insurance that's provided is not optimal from insurance companies so going to one of these third party payers is a nice alternative.
Georgie Kovacs: What are alternative ways to cover infertility treatments outside of traditional insurance companies and third party payers?
Barb Collura: Talk to your healthcare provider because they can offer you information about some of these companies that offer loans. So you can go down to your local bank and get a loan, you can refinance a home, you can also take out loans for specialty medical conditions. IVF and surrogacy are two of them.
There are businesses out there that do that. You can find those online, some of them are listed on our website, and you can ask your healthcare provider. Remember that this is a loan and you have to pay it back. To access the loan, they're going to look at your finances and your risk. They're going to come up with what your interest rate will be and the terms for payback. That money generally goes to the healthcare provider. Bank loans, however, come to you.
Another newer method of financing is to leverage a family member like a parent or grandparent who can co-sign your loan.
Then there are quite a few nonprofit organizations that are giving out financial grants. Some of them are faith-based. Then there are organizations giving out grants, where some of them even help to cover adoption costs.
The legitimate organizations have a really good process, where, for example, they have an independent group of board members who are reviewing those applications so that it is blinded. So it's worth looking into and finding out about and all of these are nonprofits. They're raising money to try and give out more grants. While we at RESOLVE don't give out any financial grants, we list them all on our website for people to be able to find them easily.
Georgie Kovacs: How are you holding Advocacy Day this year given COVID?
Barb Collura: We have our Virtual Federal Advocacy Day this year on June 17. You can phone in from anywhere. And we're hoping for a lot of people. It's a new Congress. We have new people to educate. There's a lot of excitement for our issues.
Georgie Kovacs: What is your greatest hope for women's health?
Barb Collura: My greatest hope for women's health is that it's treated seriously and that women are given the access that they need and that they want, you know, there's so much Yeah, I just focused on infertility. But there's so much about women's health where we go for so long without a diagnosis of fibroids or endometriosis, or PCOS and chronic pain. I just don't understand it, I don't understand how we've gotten to this place in this country. So my hope is that women's health is treated very seriously and that women are given what they need and want.
Resources
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About Barb Collura
Barbara is a nationally recognized expert on infertility and the family building journey, with a special emphasis on the personal experience of those struggling to build their family. She has worked with The WHO on infertility definitions and clinical guidelines, worked with ACOG on their clinical definitions for infertility, and served on the Advisory Council of the National Institute of Child Health and Human Development at NIH. Barbara is an expert on public policy issues facing the infertility community that impact both patient access and clinical care. She has been a guest on the TODAY Show, MSNBC, Fox & Friends, and Nightline. She is routinely quoted in major media outlets on a variety of topics related to infertility. In 2014, Barbara received the Distinguished Service Award from the ASRM. Barbara is passionate about RESOLVE's mission as the organization was a source of support and information during her own battle with infertility. She can be reached directly at bcollura@resolve.org.
About Fempower Health and the Founder
Georgie Kovacs, is the founder of Fempower Health, the go-to resource for all things women health serving women, their providers, and companies looking to build/improve on products for women. She also hosts the Fempower Health Podcast, where she interviews experts to help women better understand how to navigate their health both day-to-day and in partnership with their providers. Her mission is to minimize the years many take to seek proper diagnosis and treatment.
Georgie founded Fempower Health after her first-hand experience with infertility and endometriosis. Leveraging this experience along with her 20+ year tenure in the biopharmaceutical industry and consulting, she leads this movement to empower women. With limited research dollars and women’s “training” to grin and bear it, both women and doctors are in the impossible position to diagnose and treat conditions with little information. Women deserve more and better information, insight and innovative health solutions.
**The information shared by Fempower Health is not medical advice but for information purposes to enable you to have more effective conversations with your doctor. Always talk to your doctor before making health-related decisions.
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