In our latest episode, Barbara Collura, the President and CEO of RESOLVE, delves into the critical topic of expanding and protecting access to care. RESOLVE is making a significant impact in this area, and the key talking points from our conversation illuminate strategies, steps forward, and solutions.
Learn about RESOLVE's initiatives to expand and protect access to care and assist employees with insufficient coverage.
Stay updated on the New York State mandate, implemented in 2021, and its connection to fertility preservation legislation.
Speculate on upcoming Access to Care legislation, potentially involving IVF, in Oregon, Washington, Minnesota, or California.
Address concerns about IVF legislation in states such as Kansas, Alabama, South Carolina, Arkansas, and Georgia.
Explore fertility preservation and Onco-fertility Preservation bills, as well as access to care legislation, including IVF.
Support and contribute to RESOLVE's advocacy through events, memberships, and funding.
RESOLVE: The National Infertility Association
Ask Rebecca Flick: rebecca.flick@resolve.org
Transcript
Barbara Collura 00:00
We had a really interesting year and 2023 with more states passing fertility preservation. So this is for iatrogenic cancer patients, for example. So we saw Kentucky, Montana, Louisiana and Texas. Think about that. Kentucky, Montana, Louisiana and Texas, all pass legislation, mandating insurance coverage for fertility preservation. Each of those bills and laws is a little bit different. They are not all the same.
Griffin Jones 00:51
Expanding and protecting access to care. That's what I get into with my guest today, Barbara Collura. You know, her as the president and CEO of RESOLVE, if you're in the United States, resolve does a lot for you. So I make Barb tell us about what resolve is doing for expanding access to care how they use their coverage at work resources for advocating for employees who don't yet have access from their employer, they don't have that coverage or don't have sufficient coverage, specifically, how resolve helps the employee and the human resources department, we talk about states that have expanded access to care. I have Barb give us an update on the New York state mandate that was passed in 2019, but didn't go through until 2021. And then how that links up with the fertility preservation that had passed there. She talks about states like Kentucky, Montana, Louisiana and Texas which have passed fertility preservation bills or uncle fertility preservation bills passed for some headlines that we might be able to see in the coming months who might be passing big access to care legislation, not just fertility preservation, but IVF. Maybe it'll be Oregon. Maybe it'll be Washington, maybe it'll be Minnesota or maybe this fall. It'll be California then Barb talks about protecting access to care. I get us to speculate on a situation what happens if there's mass layoffs will resolve have to work to keep these employer benefits are the people that they advocate for? I asked her to weigh in a year after the doctor's decision. What sort of legislation were they most concerned about? Sounds like there was language in bills that it would be dangerous to IVF in states like Kansas, Alabama, South Carolina, Arkansas and Georgia. Barb said none of those passed when I asked her if any bills passed that restricted RT within the last three years. She said no but she does put an asterix on a bill that passed in Wyoming and she talks about that and we conclude with me calling you out a little bit depends on which camp you fall in. I might be highlighting you but I generally call out different categories of clinics and industry side companies and how they can be supporting resolve you can if you do business in the fertility space in the United States resolve does a ton for you. And there's a ton of different ways for you to meaningfully contribute, you can email me and I'll connect you to resolve or you can go to resolve.org whether it's their advocacy day their walks for hope their professional memberships their night of Hope gala are other ways to fund and provide resources for their support and advocacy services. Invest in them because they're protecting you and tell them Grif sent ya. Ms. Collura, Babs, Welcome back to Inside reproductive health.
Barbara Collura 03:17
It has been a longtime grift. And I love your show. And I'm honored to be back and thrilled to be here. Really,
Griffin Jones 03:24
it's been too long. So I need updates about what's going on in the resolve world because you guys touch everything are seemingly everything from my view. For those that don't know, the way I learned about resolve in the first place was 2014. With starting a social media company, for doing social media for fertility clinics, I wanted to know from the perspective of folks that were still going through their journey or some folks that hadn't worked out. I emailed every peer support group leader in America from resolve got a bunch of them to talk to me. And then I got an email from resolvers saying, Hey, who are you? Let's talk that's how I got to know you guys. But it started all from Wow, they do this patient support stuff. And then I started becoming interested in results for my clients because it is useful for patient acquisition and retention to have resolved support. Then I met you in person in 2015 and DC when resolve and ASRM did a combined advocacy workshop. And so resolve has done a lot does do a lot what's new, though, like what what what's particularly grabbed your focus in the last two years,
Barbara Collura 04:36
access to care for sure, access to care and so Griff when we look at our community and we look at the work that we do, we are constantly surveying our community. We're constantly asking people, What do you need? What's the biggest pain point for you and your family building journey? What are the things that result can be doing? How are you accessing our store? resist. So those are all standard things that we continuously ask the community and access to care over and over and over and over is number one, number one, number one, number one. So it's always been
Griffin Jones 05:13
that way for you always
Barbara Collura 05:14
been that way. And so we've just amped it up. I mean, we have more going on. And we continue to do more. And then the Supreme Court makes a decision, like the dobs decision, which in June of 2022, really made us have to think about protecting access to care in a very new and different way. So we kind of look at access to care in two, actually three big buckets. One is access to emotional support. We know that having emotional support on your family building journey is very beneficial. There's data that shows it keeps you in treatment longer, and helps you make better decisions. So we put that under the Access to Care bucket. And then we look at how do we expand access, because there's far too many people that don't have insurance don't have benefits don't have a way to even access the family building option that they want to use. And then the third bucket is protecting. And we've always been doing that. But with the dogs decision in 2022, we had to look at it in a very different light. So we are just amping all of those things up. When you asked me what's going on the last two years, that's that's where our huge part of our focus is.
Griffin Jones 06:35
So when you say expanding access, you also say you've got you've got a lot more going on what's been the lot more that you've had going on with regard to expanding access,
Barbara Collura 06:46
I would say it's in two areas. One is just state mandates, looking at our work in state mandates, this year 2023, we've been very, very active in not just two or three states, but like six or eight states. And we've seen fruits of that of that work, and then could go into detail on that. And then our coverage at Work Program, Griff This is where we recruit and train and provide resources to people to go ask for better benefits with their employer. And it's just it's like, every month we hear of another company that's added benefits. And it's because somebody who used our resources asked for it now, not every company that's adding benefits, had somebody use our resources, but we do track the people who who use our resources, and who avail themselves of our support, and, and so forth as they talk to their HR folks. And a lot of times we're talking to the HR folks as well. So those two areas, just like going gangbusters. I mean, they really are
Griffin Jones 07:55
I want to ask about the six or eight states. And then I also want to talk about that expansion of the employer coverage. You did mention protection. So let's talk about that for a little bit. And we'll shift back to expansion, where a year out from the doctor's decision now, there has been a lot of concern. And what I'm interested in is specifics what specific I had Igor Brusilov on the show, and he said something that I think is great wisdom, which is anytime legislators start putting pen to paper, you should be paying attention you should be concerned. So there's concern that could happen anywhere, but what specific states what specific pieces of legislation have either were most concerning, and we're not resolved or are coming up?
Barbara Collura 08:40
So we saw a number of states. Well, first of all, let me just kind of backtrack, we look at a bills, and we read those bills, and we either put them in like a category that says there isn't anything in this bill that's going to impact access to IVF or ectopic care or miscarriage care, just because of how its worded. We're going to put it over in this pile. And that's not something that we're going to focus on just now. And then there's the pile of bills that we read and we're like, there's concerning language. There's vagueness or there's some language that's wide out very, very scary. So we saw bills, specific bills South Carolina, Alabama, Kansas, that Wyoming that were very concerning. We saw concerning bills in states like Texas and Georgia. The one the ones that were really really really awful. Were South Carolina, Kansas, Alabama. There were there was a bill in Arkansas. So we saw language that was such that they were defining an unborn baby, not a person, they were defining an unborn baby. And that's the unborn child story. They were defining an unborn child as beginning at at fertilization. And then in the bill, there wasn't any language protecting any other kind of care. So these sometimes are shorter bills, that kind of language. The one in Kansas had some really odd language about artificial insemination. There, so it actually went towards more on the treatment side. But certainly the bills that I just referenced, we were concerned about how they were defining an unborn child when life began. And then zero language that protected anything that's done in an IVF clinic, as well as protecting our a woman who may need miscarriage care or pregnant person may need ectopic pregnancy care. So I will say that none of those bills advanced for a variety of reasons in each of those states. And so we read those bills, and we put them in the box of these are really, really bad bills.
Griffin Jones 11:18
How do you find out about when these bills are coming forth?
Barbara Collura 11:22
We pay for a bill tracking system, which a lot of organizations do, ASRM has one. Some of the other organizations that we partner with on coalition work, have build tracking systems. Some organizations not resolved but some organizations that are in the reproductive health space have state entities all over the country that have lawyers and lobbyists who track stuff and because resolve is part of several different coalition's we also share information. But we have a bill tracking system that we paid for. It's only as good as the keywords. So it doesn't read the bill for you, it doesn't flag it as bad. We have to still go through it and read it and determine through our own resources, our own staff, is this a bad bill or not? And then oftentimes, because we're part of these coalition's we'll trade information. So for example, on Alabama, we reached out to some folks on the ground in Alabama, we got some feedback from a coalition that was fighting all of the anti abortion bills, we got on a phone call with them, we walked through this particular bill, they were able to tell us tremendously valuable insight information on who the bill sponsor was how this bill was being viewed in the chamber, how many more weeks they had, what's the legislative process, oh, this is going to be assigned to a committee chair, who's not going to do it, anything with it, because there's this other thing going on things that you you and I would never be able to figure out on our own what's going down in the state capitol of Alabama. So that's the kind of work that we have to do. Oftentimes, for each one of these bills. I also try if we don't have access to a paid lobbyist, and we could talk a little bit about that, and try and see who might, who might have a paid lobbyist, and then talk to ask that organization. If I can talk. I've done that a couple of times this year, I've reached out to organizations and I've said, Would it be okay if I talk to your pay lobbyists and ask them some questions, and that's very difficult because they're paying that person and now I'm asking for some services. But oftentimes they'll say yes. So it's gathering as much information. We ended up hiring somebody in South Carolina. But I knew of a lot of other resources through our partners, through our pharmaceutical partners through other organizations that I could go through and ask them to provide us with some insights.
Griffin Jones 14:11
This might be a lobbyist one on one question, but do your lobbyists if you're talking about state houses typically come interest state? So if it's a Nebraska Bill, you want to have somebody in Nebraska or their or their lobbyists that cover all parts of the country?
Barbara Collura 14:26
No, you want somebody in that state capitol who just works in that state capitol and knows that very, very well. The person that we hired in South Carolina, we didn't actually hire this firm to do lobbying. But they are a registered lobbyist. We hired them to do Bill monitoring. It's a little different. We didn't authorize for them to speak on our behalf, which is what lobbyists can do. They were on the ground. deeply, deeply involved in the day to day operations in the South Carolina legislature which is convoluted to, to put it nicely. And we needed that. That high level information that was accurate and timely. And that's what they provided to us.
Griffin Jones 15:13
So South Carolina, Alabama, Kansas had some scary wording in their bills where those ones didn't advance. Were there any bills in the last year that passed in any state house that that hindered the capacity to do art?
Barbara Collura 15:31
I'm going to say no, with an asterick. So Wyoming passed an abortion law, it was signed into law by the governor. And it has some disturbing language in it. But it was very clear that that bill was about a pregnant person. So that's another area that we would look at in who this bill impacts, because that's not going to impact IVF if it's very specific on a pregnant person, but it had some language in it, that I would not have preferred to see. There's no Rei clinics in Wyoming. And so nobody is getting access to IVF in Wyoming that we're aware of today. So and I wouldn't go even go so far as to say that with that law in place, IVF is impacted. We just wouldn't, we just wouldn't would be careful about if there were clinics in Wyoming. Not that they couldn't do what they needed to do. It would just be an extra effort to try and determine, make sure that they are complying with the law. Given that that's not the case right now in Wyoming, my answer is still no, we didn't see anything that passed in 2023. That is x that is impacting negatively impacting people's access to IVF or rights over their embryos.
Griffin Jones 16:58
I don't want to take us on too much of a tangent but how does this affect third party if at all,
Barbara Collura 17:03
it affects third party surrogacy, if you're using gestational surrogacy, you have to do IVF. If you are doing donor egg, you're doing IVF. If you are doing donor sperm with artificial insemination probably doesn't impact it. Because what's the focus is traditionally on? What is an embryo? Is it a is it a person or not? And when does life begin? So you'd have to look at what the medical procedures are, it could impact genetic testing, though, it could impact embryo cryopreservation. A could impact other things that we might want to see down the road in terms of any kind of manipulation of the embryos in the laboratory.
Griffin Jones 17:46
I want to come back to some of the legal advocacy when I asked you about how you overlap and work with other groups, but still within this sub theme of Protecting Access to Care seems mostly to be on the advocacy side, because the employer side has mostly fallen into expansion. Now. I wonder if we do see a big contraction in the economy, if you'll start to find yourself in the protecting of the employer benefit side. So you know, when I see these tech layoffs, 1000 people here 500 People here, have you seen any retraction in fertility benefits yet?
Barbara Collura 18:26
I don't know that I would necessarily know that if they are. There might be a new story about it. There might be something you know that we hear from one of the third party benefit providers.
Griffin Jones 18:39
I guess there was Twitter, right. That was in the headlines, I think yeah.
Barbara Collura 18:42
And sometimes I do my best, we do our best to track that down. I don't believe that every news story is accurate. Shocker. So because we see so much of what we know, as fact, and then we see it in the media, and we know it's wrong. Got a specific for us. Now, there's so many, I just would I would, I would I would say that with without really good data. I am not in a position to say whether fertility benefits have contracted currently, under our current tech layoffs and that sort of thing. I simply do not know enough.
Griffin Jones 19:24
I wonder if that's something that you'll have to consider in the next couple of years? I hope not. I don't know. It seems like that hasn't been the case so far. When I do my episode with Ravi gota, and many Shuguang about chat GPT and we talk about how much that's going to take over in the art space. It's also taking over a lot of the tech space. I think it's going to take over a ton more in the coming years. And and I hope that doesn't mean mass layoffs. But it could and if it does, I wonder if that is become something where You have to help people make the case that their, that their benefits aren't taken away.
Barbara Collura 20:06
Whenever a company, any kind of company is looking at their financial sustainability, I'm sure they're looking at all different possible ways that they can cut costs. And I would hope that they would look at their full benefit list and determine you know, how that impacts their current employees. Remember, though, that infertility benefits have grown now, way beyond financial and tech, you've got Starbucks and Lowe's, Home Improvement, and you've got hospitals, you've got municipalities, you've got teachers unions. So we have gotten to the point where there probably isn't an industry that isn't currently offering these kinds of benefits. So I would, I would hope that there would be opportunities for people to find jobs in other places that would have those benefits. We know their recruitment and retention tool. So if you are still looking for talent, or you want to retain your talent, it's an excellent benefit for for those reasons. So you're absolutely right, though, we haven't had an economic downturn. In a world where a lot more companies are offering this benefit. So we don't have any data to see how companies react, I guess I would want to look back at 2007 2008 and determine if companies were who were contracting, if they did eliminate paid leave, or you know, other kinds of you know, other if they reduce their vacation or whatever it was in terms of benefit design for their employees, I just found out
Griffin Jones 21:49
my company did in 2008 2009, they did a whole bunch of crap. And it wasn't a great, they didn't have a lot to begin with either. But we're in a different world. Now. That segues us back into the by the way, it wasn't my company, it was the company I worked for, didn't own my own company when I was 23. When we segues us back to the expansion of care. How are you helping employees make the case to their employers? And is it is it employees that are coming to you first? Are you networking with HR groups? And and and the companies are coming to you sometimes? Or is it employees that are part of the support networks of resolve and they're coming to help me find a way to get my employer to to extend this to other people?
Barbara Collura 22:37
It's the latter. When we looked at the work that we were doing on the advocacy front, we felt like we had done such a good job of recruiting and training people to advocate to their state legislator or coming to Washington, DC to advocate for their federal legislator. When we looked at employers, we thought why can't we do the same thing. But instead of going to their state capitol, they literally walked down the hall, they EHR, and they advocate that way. So we took our years of advocacy, grassroots advocacy experience and segwayed into this coverage at work, we don't have the ability to go top down. So well, that sounds like the natural way. That is not a way that worked for our organization, we felt that we had established a brand, and a trust and a reputation amongst the grassroots that we knew what we were doing. And so we put together a program called coverage at work. It has resources and toolkits for both employees and employers, but our marketing and outreach and the majority of our work is talking to employees, we find them just how anybody finds resolved and how anybody finds our support groups. And we also know that many many people are referring people to this we have many of the SARC clinics who are telling their patients at the point of care you and I know how clinics have financial advisors how they have have the people who sit down with the with the patients and talk about their insurance or the cost. And you and I know that clinics do a such a great job of understanding who's in their community, and what kind of benefits they have because they've had patients from all the big companies in their in their community, and they can easily say to someone I know where you work. I can tell you right now, you don't have any benefits. However, here's a piece of paper I'm going to give you there's an organization called resolve and they have this great program and it'll help you learn how to potentially advocate in your in your company. We don't want the clinic to feel like they have to do that. So we have so many ways Gref that people come to us and find that program. And then originally it was really just If the employee toolkit and then we realize what if they go down the hall to HR, and they make the ask and then HR is like, what do I do? What do I do now? I don't even know what you're talking about. So we are creating an employer toolkit. And most of the employers who are fighting that are because the employee has said, here's this toolkit, by the way, don't believe me, here's all this information. And then we we have an opportunity. So we have modelled benefits, we have a lot of costs and financial data. Of course, we have medical data in there as well. And it really arms, in my opinion, the HR professional to begin to do those discussions and research at a, at a higher IQ level. Now, they have now some knowledge and familiarity, they probably have ways to ask questions of their broker, maybe their existing provider, and so on.
Griffin Jones 25:54
So how do you work with the employer carve out companies?
Barbara Collura 26:00
So are you talking about that what I call the third party benefit providers, which
Griffin Jones 26:04
Proginy, Carrot, Maven kindbody,...
Barbara Collura 26:07
We work with them, like any corporate partner, so if they want to come tonight, and hope if they want to sponsor one of our programs that are part of our standard, a sponsorship, we do that, in terms of other ways that we work with them. I like to say that the work that we're doing with employees and employers is creating a lot of awareness about the need for these benefits. And I'm hoping that it's generating demand for those benefits, because I want more and more and more employees to be talking to their employer, whether it's through anonymous surveys, whether it's direct conversations, I want HR people all over the country to be like, Oh, my God, I heard from another employee about this bet the need for this benefit, I keep hearing about this over and over and over, that's generating to me and what they then do with it, and how they get that filled, that need filled within their company, we don't get involved in
Griffin Jones 27:06
is there a reason you don't get involved? Because I'm thinking if I'm on the sales team for one of those companies like man, I want to sponsor that Toolkit. I want my name at the top of that toolkit. And then I want resolve to maybe pass that email from that person along to me, is there an opportunity for them to
Barbara Collura 27:23
we don't do any sales, sales referrals, we don't have a sales pipeline business going is a nonprofit, we are very careful about our brand, about being unbiased. And about providing objective fact based information. I will say if a if an HR person contacts resolve and says, I heard there's third party providers, can you give me a list, we'll give them a list. We have everybody listed on it. And so so we will provide a list but I'm not going to give go any further than that. And resolve is not a sales in a sales pipeline position. And I think that, you know, we're here, I can tell you right now grip, if I was to do that, I would have to know every single thing about those company and their products and their pricing and be able to be in and that's what brokers do. That's what other folks do. And I'm not we're not in a position as that patient advocacy organization to get into that business.
Griffin Jones 28:31
Maybe they could buy some tables that night of hope for some HR associations, though, that wouldn't be a bad idea.
Barbara Collura 28:38
You know, they can do they could do a lot of things I we do we do research studies, we've done speaking, I've been on panels at some of those HR things where I talk about resolve, and it's one of those benefit providers who's also on the on the stage speaking. We're happy to do any of that kind of stuff, any opportunity to bring awareness to infertility, bring awareness to resolve, and mostly bring awareness to this these tools and resources that we have. I'm all for it.
Griffin Jones 29:08
So that's the employer expansion, part of expanding care. How about the state mandates? I think you said there were six or eight in 2023. Who who's in that group.
Barbara Collura 29:19
We had a really interesting year in 2023, with more states passing fertility preservation. So this is for i atherogenic cancer patients, for example. So we saw Kentucky, Montana, Louisiana and Texas. Think about that. Kentucky, Montana, Louisiana and Texas, all pass legislation, mandating insurance coverage for fertility preservation. Each of those bills and loss is a little bit different. They are not all the same. So for example, in Texas, it's Just for cancer patients who can access this benefit? Remember, let me just back up insurance one on one here graph. When you pass a state mandate, it's only impacting people who are covered by certain kinds of plans. It doesn't cover every employer. It doesn't cover. The companies that are self insured doesn't cover federal employees. So it covers a segment of the workforce, but not all. In fact, there was a great study that Boston IVF did, oh, my gosh, three or four years ago. Now, Alan Penzias, who was one of the authors. And they did a study in Massachusetts, which has the best insurance mandate. It's been around for 30. Some years, the percentage of people who were caught of their patients who are covered under the mandate, it was about 30%. So that gives you a sense. So Kentucky, it's only they're only allowing coverage for freezing of sperm and egg, not embryos. So each one's a little has a little different flavor to it. So we saw those come in. And the Texas one has been around that bill's been around for a few years, Montana, Louisiana and Kentucky. If I'm not mistaken, Griff, I think this is the first year they were introduced and the laws and the bills passed. It's pretty amazing. And then we did. We did IVF and fertility preservation bills in Oregon, Washington State in Minnesota. And then we're still working on an IVF only bill in California because they did fertility preservation a few years back.
Griffin Jones 31:42
So for those states like Texas, that it had been in, you said that Bill had been in the legislature for a couple of years. Was it that exact bill? Was it just a different version of similar bills that had popped in?
Barbara Collura 31:59
That's a great question. I don't want to say exactly my light. I will i My assumption is that the thing that changed this particular year was that it was just going to be for cancer patients. We go in typically with broad model legislation. Texas, we've had a fertility preservation bill for three or four years now. And each time it gets introduced. Yeah, there's little tweaks that I always made to it so
Griffin Jones 32:29
well, that so that was part of the question I'm really after is what changed to get that passed this year, if it had been before the goal line for a couple years, what what actually got it through this time,
Barbara Collura 32:41
sometimes it's a procedural thing. Some states have requirements that if it's an insurance mandate, it has to sit for a year and go through some kind of cost study. Sometimes it's as simple as who's chairing a particular committee where a bill has to get through like a rules committee before it hits the floor. And that position changed in in a particular state legislature. It's not always, I would love to say it's Oh, because we got more sophisticated and we were smarter, it may be little things that are completely out of our control, in terms of why didn't pass the year before. And then, you know, the stars and the moon line this year, for whatever reason, there is no rhyme or reason to, to be able to say this is what happens every year in every state and why it doesn't. And why it does move
Griffin Jones 33:37
is that generally the strategy to start a little bit broader and then to whittle down, why not the I because I can see, I can see both sides. On one side, it's called anchoring and negotiating, ask for the pony get the puppy. And if you ask for the puppy, you get the goldfish. So So start with more, but on the other and I could also see fertility preservation for onco. fertility preservation being fairly easy to pass that's going on a bunch of assumptions on my part. So I could be wrong about those assumptions. But you know, maybe you get more past and you start to build relationships in there. And then it becomes easier to get other things introduced. Talk to us why the broader first as opposed to the more specific first.
Barbara Collura 34:19
It's a it's a strategy conversation with the bill sponsor with the really the mood and the sentiment of that particular legislature, who might be chairing a particular committee that this bill has to go through and what do they like to see and not like to see? So our approach is always with our bill sponsors and champions is to go in with our model legislation. And then right there at that stage, you're going to start seeing changes being made based on what the bill sponsor and the bill champion are, are taking into consideration from their perspective. But our ask is always Are model legislation. And and then to your point like we saw this in Washington State this year, which the bill IV a bill did not advance. But they wanted to start taking things away. So one committee, and the bill sponsors introduced the big bill. And then they started to kind of want to whittle it away. And that's where we might say, Okay, we will still support this. But if you go below this level, if you start really eliminating things, then we're going should not support the bill. And then we will be asking our bill champion, to withdraw the bill. And that has happened. So not in this case in Washington State, but it has happened in legislation across the country where we have seen something get whittled down so much that we want to kill it, and we get killed.
Griffin Jones 36:00
How is the New York state mandate going was that 2021 That that was passed,
36:06
the mandate passed in 2019. Surrogacy became legal in 2020, the New York state mandate while it was passed in 2019, it didn't take effect until it was January 21. So and that particular piece of legislation is kind of interesting, because it covered IVF, in a very limited market. And then it covered fertility preservation, in that same market, but in a couple of others, as well. So the ivy that the fertility preservation mandate actually covers more people than than the IVF piece.
Griffin Jones 36:48
So when you say, a limited market, what do you mean by market,
Barbara Collura 36:53
in the case of state mandates, they're only for the fully insured market. And in the fully insured market in a state, you have the large group, small group and the individual market. And so state mandates can only apply to those three markets. And when I say large group that's in the fully insured market. Those are companies that are generally 500. At last, once you start getting even above maybe 250 employees, for sure, 500 employees, you become self insured, and then state mandates do not apply. So in New York, just to be very granular here, the IVF piece is only for the large group, fully insured market, the fertility preservation piece, they pass that law, and it applies to the individual, the small group and the large group fully insured market in New York. So
Griffin Jones 37:50
more people, I imagine you're in a number of different states, maybe ones like New York, trying to get them to provide IVF coverage for more people. As you mentioned, it's the case in California, we've got fertility preservation coverage, but you're trying to get IVF coverage, who's closest, as far as you can tell, what what should we expect the next big headlines to be? Can we expect any big headlines in the next coming months,
Barbara Collura 38:14
California is getting closer to passing IVF mandate. That's a huge market, as you can imagine. So they get closer and closer every year. That California is in session each year until around August. So we won't really know until, you know, August or September of 2023, how the year went in California. And then in 2024, we will be back in Oregon, Washington and Minnesota. And we got very close in Minnesota. I would I would I would hope that that would be a state we have governor who's an IVF. Dad got two kids from IVF. He's been very, very wrong. If I remember correctly, it is mine. That's gotta count for something. Maybe. And then we've got legislate both legislative bodies, their house and Senate, where there's a lot of champions, Washington State, we have phenomenal advocates. We have phenomenal advocates in Minnesota, Oregon and Washington as well, and just really committed champions. So that's, you know, that's half the battle is getting people excited in that state and keep them engaged. And we have gotten in all those states.
Griffin Jones 39:32
I think it was very nascent. And it was probably just someone introducing the idea. I don't know if it ever even got voted on, but I think it was Connecticut where they were talking about having IVF covered by Medicaid. Do you see that happening anywhere in the next year or two,
Barbara Collura 39:49
but we have seen fertility preservation covered in Medicaid and that was in that's been in Utah, so I could see down the road that being a case, we do have a federal bill, where cancer is being cancer, fertility preservation for cancer would be covered by Medicaid. And that's a bill in Congress. So I could see that probably being the first kind of thing being covered more widely, that that's going to be several years down the road.
Griffin Jones 40:24
Is that better or worse? For any reason? Let's use the Utah example fertility preservation being covered by Medicaid, does that expand it to more people? Or does it exclude the people that are in the other market
Barbara Collura 40:35
groups, it just expands coverage, it expands coverage in a very big way, and expands coverage to people, Medicaid, or people who are lower income. And so the chance of those individuals being able to like will take fertility, preservation, fertility preservation to preserve their fertility before a cancer treatment. That's not available to them, you know, they're not gonna be able to pay out of pocket for that. So this is hitting an audience that is very much in need of that. It doesn't hurt any of our other advocacy efforts. If we see a state decide to have Medicaid, for example, cover fertility preservation, that's a very good thing.
Griffin Jones 41:18
We dug in a lot to the expansion and protection of care both on the employer side on the advocacy side, this has you in the sphere of other groups as well. So there's SRM there's DRS for fertility, there's other nonprofit groups and and probably other agencies, how do you? How do you overlap with them? Where do you where do you where do you converge? Where do you diverge?
Barbara Collura 41:46
The key to advocacy is having a coalition of equals where everybody's bringing something to the table, and that are all aligned on our goals. And so that's what coalition's are, there's hundreds and hundreds and hundreds of coalition's of advocates who will work on different issues, let's say to the US Congress, when we go into a state we're looking for, who are our allies in that particular state who can align with our goals? Who brings something to the table that we can't bring? It doesn't really, it's not really advantageous for us to go in two states where it all us, Massachusetts, they are trying to get fertility preservation passed in Massachusetts and resolve New England is there. They are taking lead on that. If they need something from us, so let us know. But we're not going to play in the Massachusetts State Capitol. Why would we we're not bringing anything unique or different to the table and resolve New England is right there. So that's the kind of work and thinking that you have to do. We have a coalition alliance for fertility preservation, resolve, ASRM. And then faring pharmaceutical and EMTs thrown out the five, those five entities three of us are nonprofits to follow up. We've been working together for many years, to the point where we plan out what states we're going to be working in together, and how we're going to work together. It's very collaborative, it's very transparent. We make decisions on who's going to hire a lobbyist here or there where and how we're all going to work together. And because we've now been doing it, and where's a such a high level, a trust and professionalism, it works extremely well. So I will tell you, though, we look for partners in that state, one of the things that's really helped in California this year is teaming up with the California equality. So this is the LGBT group that's very prominent in Sacramento and in the state. And they became a champion of this issue, and it became one of their top issues for their legislative agenda. So they are we are on all our coalition calls with them. And it's been really, really fantastic, as well as other groups. So depending on on what we're doing, I'll give you a great example in Minnesota because you talked about that being my home state. We did an advocacy day back in April. In Minnesota and St. Paul and the Leukemia Lymphoma Society, advocated alongside of us. They had their staff, they had advocates, they made this a big issue. They have staff in every state capitol leukemia, lymphoma society does, I don't paid staff. They were all there with us participate in our advocacy day and did everything they could to help get our legislation passed. So so that's another example of what we do so coalition's are really the key, and that's how we do the work that we do. I will see you mentioned doc As for fertility, they are great at getting the word out about our particular legislation and helping, you know, we say to them, Hey, there's this hearing in Oregon or this hearing in Washington State, can you help or we need people to register for advocacy day, can you help and they are great about getting the word out. And then they're doing some things. There, there were a 501 C three organization as his ASRM as his alliance for fertility preservation. So there are things we can't do legally, as as a nonprofit organization, as it relates to lobbying, I can never endorse a candidate, I can never raise money for a particular person who's running for reelection, I can't even tell people how to vote. So doctors for fertility has the ability to do
Griffin Jones 45:49
more of those kinds of things. What haven't I asked you, we've caught up a lot about what resolves into and you're into a lot resolve touches pretty much every angle of this space, at least as far as patients are concerned. What haven't I asked you,
Barbara Collura 46:06
when I look at your audience of this podcast, it's people who work in this field, it's professionals. It's people who care deeply about the work that they're doing, to advance care for, for for people. And whether they're a doctor, whether they're a farmer, whether they're a CEO, genetic testing, I mean, I know who I listened to your podcast. And I know a lot of your guests. And they are folks who are our, our big supporters of our organization. But when I, when I talk to the audience of people that that listen to your podcast, oftentimes, they are unaware of how small we are, in many ways. And you were to when you first got to know us, because you're a victim
Griffin Jones 46:53
of your own success. In that sense, you're a victim of your own hard work in that sense, like you, you appear much larger, because you're all over the place.
Barbara Collura 47:01
I don't want to minimize the work that we're doing by saying, you know that we're small, that's not at all what I'm saying. What I hear oftentimes is physicians feel that we are well, well well funded, because we get all this money from pharma. Pharma feels like we're well supported. Because we're getting all this money from the doctor, there's a little bit of that everybody's kind of point and patients who say, I don't have any money, I'm not giving you any, I gave it all to farm and I gave it all to my dad. So everybody's pointing to somebody yells, and it's surprising. I hear this over and over and over from people who, when we when when a let's say a doctor joins our board or somebody, you know, starts supporting us. And they're like, Oh, my goodness, I didn't, I didn't realize that, that you guys, I thought you were like a $20 million organization. And I think that that people are surprised at what we're able to accomplish with our budget, we're incredibly good stewards is you know what we do, but we need to do more. And this is what, and it's not because I want to do more, because we want to have, you know, more staff is because our community deserves more. And they're not getting everything they need. I don't want to be doing this for 20 more years, Griff, I want to be done. Wouldn't it be amazing in five, six years, we tied a bow on this expanding access piece of it. And we we accomplished what we needed to accomplish. That's going to take investment and money. If we want to continue to do a couple of states a year and I'm still sitting here in 20 years. That's not helping our community. Do you know we have people who come to advocacy day, year after year after year, and you know what they tell me grift they say, My God, it my daughter, or my son who I've worked so hard to have is facing the same challenges that I'm facing shame on me. Because this sucks. And I can change the status quo for the next generation. But let's get it done. I want to change the status quo for the person who's diagnosed tomorrow, the person who's diagnosed a year from now, because it's not fair. how hard this is. And we can fix it. We're smart. We know how to do this. We know what needs to be done. Get it done. And that's what I think a lot of people don't realize. They think that we're going this slow, methodical way for some strategic reason. And it's not. It's because we don't have the funding and so as a community, do we really care about patient care and access or not? If you care about it, join us, support us and know that you are in vesting in an organization that partners with ASRM and other organizations to get this done in the most expeditious smartest, ethical way possible. And so that's what I would say. I would say that's the biggest kind of, I'm not one of the that's not the biggest but it's one of the biggest misconceptions that people have about resolve and advocacy in general. And they think it's like millions and millions of dollars that are being put into this and it's not it's not and so let's get this done. Get the start.
Griffin Jones 50:37
For those that aren't resolved professional members yet I see just every provider become a result professional member I see just every clinic get the clinic professional sponsorship, if you are a clinic network you better have a table at night of hope you better have a couple of tables at night hope if you're if you're in network you better be having doing a walk of hope if you're big clinic you better do be doing a walk vote which doesn't mean small clinics can I'm just putting this is the onus that I'm setting on people right now. And and and for those of you that are in any, any states, but especially the ones that were mentioned tonight, especially those ones, you better be at advocacy day too. So Barb Collura, President and CEO of resolve the national infertility Association. Thank you so much for coming back on inside reproductive health.
Barbara Collura 51:28
Thank you Griff. This has been a pleasure.
Sponsor 51:31
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