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Join RESOLVE’s leadership team for an in-depth look at what it takes to pass pro-family legislation, protect IVF, and what we’re up against.
HOSTS
President & CEO, Barb Collura
Chief Engagement Officer, Betsy Campbell
Chief External Affairs Officer, Rebecca Flick
ABOUT RESOLVE
RESOLVE: The National Infertility Association is the largest non-profit patient advocacy organization in the country focusing on increasing access to all family building options through insurance coverage and policy changes as well as protecting fertility care like IVF from legislation.
Welcome to Infertility Discourse, a podcast from RESOLVE, the National Infertility Association. I'm your host, Rebecca Flick. And along with me today is
Barb Collura:Hello. It's Barb Collura.
Rebecca Flick:So, Barb, today is a very special episode of our podcast. I don't have a a fancy name for it quite yet. Maybe dig deep.
Barb Collura:Come on. There's a million songs we could come up with in this one.
Rebecca Flick:I know but I don't wanna I don't want it to be sappy. I wanna go out strong and empowering. I might need to dig deep into your two favorite artists, Prince or Earth Wind and Fire. But this will be, the last episode with you.
Barb Collura:Well, you can have me back as a guest. But, yes, this is the last episode that I will be doing as a RESOLVE. Yes. As our sidekick, as Infertility Discourse for sure.
Rebecca Flick:Yeah. So for those of you of you listening, we're gonna take a step back and look at twenty plus years of RESOLVE advocacy through Barb's eyes. I say twenty plus because Barb's involvement with RESOLVE started prior to her being on staff. She was a volunteer and was very active in helping the organization move from Massachusetts to the Washington DC area specifically to focus on advocacy, became a staff member in 2004 and then became president and CEO in 2007. I had to think about that. And, you know, we've said this many times on the on the podcast, but if you're listening for the first time, I've had the privilege of working with Barb for the past twenty years myself.
Barb Collura:You this is your twentieth anniversary at RESOLVE.
Rebecca Flick:It is. Yep. And, we've seen a lot, but, you know, I wasn't at the at the top spot or the head of the organization. And I and I know Barb's lens, through what's happened is really important, and I wanted to capture a little bit of that in podcast form.
Barb Collura:Woo hoo. Here we are.
Rebecca Flick:Here we are. So, let's start with a little bit about your volunteer work, Barb. What what was the advocacy space like for family building back when you were volunteering? What were we what was the community focused on? What were the biggest challenges?
Barb Collura:Well, I live in the Washington DC area. So I was able to attend a couple of federal advocacy days before I joined the staff. I feel like maybe 2001? I know I did two of them. And so there were organized federal advocacy days. They were small. When I was a volunteer, we had this conference of nationwide volunteers that got together, I don't know, maybe twenty-five, thirty, forty people. And one year it was here in the DC area. And so we just did our advocacy day. I remember we stayed at a hotel over in Arlington and everybody went up to Capitol Hill.
Barb Collura:So that was a lot of people. I remember being at an advocacy day when I was a volunteer and I was paired up with this other woman from Northern Virginia. And she told me when we were walking around Capitol Hill, Rebecca, that her family, like her parents and her siblings, had no idea that she was going through infertility. And I'm like, but you're up here on Capitol Hill. You just told that staffer that you're going through infertility. She's like, I know. And I just remember thinking, what? You're up here on Capitol Hill, you haven't even told your family. Can you imagine? I don't know.
Barb Collura:So I know that a lot of people go through infertility and they haven't told their family. But then to go to an event where you're telling your story. So there was so much secrecy. We have training on how to tell your story. It was a lot of really just do it yourself kind of figuring it out.
Barb Collura:I will say that Erin Kramer who at the time was contracted by the RESOLVE Board to do government affairs for RESOLVE. Or federal government affairs, excuse me. She told me recently, she said, Barb, you know RESOLVE staff, there was a government affairs person on staff. I didn't know that. So that would have been like in the early 2000s.
Barb Collura:But Erin did our advocacy day. She worked on primarily one bill. And it was an insurance coverage bill. And it was introduced by Congressman Anthony Weiner of New York. And it was a pretty good bill. It was a bill that was very comprehensive. It covered military, veterans, private insurance, federal employees. It was like the whole thing. And it was kind of one of those bills before its time. But I remember we advocated for that, Rebecca, and pushed for that on those advocacy days.
Barb Collura:But we also pushed for things like NIH funding. So the adoption tax credit was also a big issue because at the time, the adoption tax credit was not a permanent part of our tax code. Did not happen until 2012. So think about it. All those years, we were pushing for it.
Barb Collura:So the way it worked is that it had what's called a sunset. So let's say the adoption tax credit would pass under a particular administration, and it would be for three years or four.
Rebecca Flick:Never permanent.
Barb Collura:Right It wasn't permanent. So those are the kinds of things that we were advocating for. And let me just say at the state level, it was very different. It was completely decentralized. It was all done through our chapters. And there wasn't any sharing of information. There wasn't one advocacy alert system. No one database. It was very, very much managed at the local state level by those volunteers right there.
Rebecca Flick:Right. Yeah. The technology has really advanced and helped us so much, I think, for sure.
Barb Collura:Yeah. Yeah.
Rebecca Flick:What did you see change over the time that you became staff? I mean, you talk about those early days of federal advocacy day and the the manageable numbers. I mean, I remember a time we packed brown lunch bags for our advocates with, like, water and granola bar.
Barb Collura:Oh my god. I forgot about that. Oh my gosh.
Rebecca Flick:You know, it was manageable to do that because there was maybe a few dozen people. I remember we learned of Michael Jackson's passing during an advocacy day. I don't know if you remember that. I have very, very clear memory of that. Like, that's how how long we used to do this. We used to do these in June, and people would come in from all over the country on their own.
Barb Collura:Yeah. I mean, you know, we, how has it changed? It's changed, and, uh. First off, we have people coming back year after year. I distinctly remember I don't know if you remember this where I was like, oh my god, people are coming back.
Barb Collura:And then I was so curious because then they had built their family. And I was like, excuse me, why are you still coming to advocacy day? And I will never forget the first person who said to me, If this is still happening for my kid, if it's still this hard to build your family, shame on me. I'm now trying to make it better for my kid. And I remember thinking, Wow.
Barb Collura:Because Rebecca, year after year after year, it was like new people. Once they resolved, they were done. Never heard from them again, let alone at Advocacy Day. So for me, I think a big, big difference is the commitment that people have today to this issue regardless of their own personal benefit in the policies that we're advocating for. Right?
Rebecca Flick:Yeah. Even this year, we had a decent amount of people who walked away from treatment and are living without children come and participate in advocacy day for the first time.
Barb Collura:You know, I mean, just shows you that it's about a movement. It's about issues. It's not about a flash in the pants. Oh, we have this one bill this year. Let's go. It's like, wait a minute. The system doesn't work. And the status quo, as we always say, is not acceptable. And they're not willing to walk away from that and or not willing to say, It's not my problem. So that's, I think, huge, huge, huge difference in those.
Barb Collura:And that's no offense to those folks who were advocating in the '90s and early 2000s and whatever. It's just how we talked about it. I'm taking responsibility of this from RESOLVE too. It wasn't how we talked about it. Now it's really about that movement and that the status quo needs to change. So that's a big one.
Barb Collura:We go at advocacy day around big issues. It's less about a bill number. But I think for many, many years, we were just focused on a bill number and not thinking about, hey, wait a minute. This is an issue that we had to sustain for many, many years in Congress.
Barb Collura:How the bill looks may change or who the bill's sponsor is. But we want Congress focused on these issues year after year. So I think that's another big change. I mean, state advocacy has completely, completely changed since when I started at RESOLVE, I think for the better. I mean, I think we have just much more sharing of information.
Barb Collura:We have model legislation. We can take what we learn from one state and bring it to another. We have our partners paying for lobbyists all over the country. We all work together. It's very coordinated. So that's huge.
Rebecca Flick:I think the biggest thing I've learned about state advocacy is how different it just wows me all the time how different each state process is.
Barb Collura:Yes.
Rebecca Flick:How some states and that current set of lawmakers maybe be more influenced by lobbyists, but others than other times it's, oh, it's grassroots all the way. Like, let's get our action alerts flooded in that state. It's just, and I think we've had to adapt every single time a bill is introduced at the state level. I think we're super thorough and thoughtful of what is the best approach for this and not just always repeating.
Barb Collura:Yes.
Rebecca Flick:The same approach. And that is hard. That is. Yeah. That's hard on a small staff. Right?
Barb Collura:Yeah.
Rebecca Flick:So we're we're it's almost like you're dealing with fifteen, twenty state bills, and every single approach is slightly different.
Barb Collura:Has to be. Has And the process is different. Personalities, even volunteers on the ground, doctors. Some states we've had amazing involvement from physicians. In some states, just don't have the band. The doctors don't have the bandwidth. It's not as big or small. So it's very, very different. You mentioned technology. I think technology has played a big role in being effective, efficient, having a better advocate user experience for sure.
Barb Collura:Social media has definitely impacted advocacy, both positively and negatively. But certainly, I'll take the good in getting our issues out and getting people engaged and knowing about things. And then I'd say a huge difference is that we use the media now. We are very media savvy. Of course, have a wonderful PR partner in Fenton.
Barb Collura:And Rebecca, you manage that so well. But there's a huge interplay between advocacy and PR. And I think we've really come a long way there too.
Rebecca Flick:Absolutely. So when we talk about the advocates making a difference on the ground, do you have a when you think of the advocates that you've either learned from or mentored or met over the decades, describe a really strong resolve advocate for our audience.
Barb Collura:So my little avatar? My little whatever they call it.
Rebecca Flick:It's your Barbie in a box. Call it you know.
Barb Collura:My advocate in a box. What does my advocate in a box look like?
Barb Collura:Great question. I would say it's, first of all, somebody who feels really comfortable telling their story. And that takes time. And that can take work with somebody like Resolve or just somebody practicing. But really feeling comfortable with their story and what their message is.
Barb Collura:For example, it might be lack of insurance. It might be that they needed to build their family through donor conception or surrogacy. Or it might be that they needed to build their family through adoption. Or what is the crux of your story that is going to be most compelling? And I think really finding that and feeling really, really comfortable. You and I know the advocates who find that voice, who they had it all along, but who finally feel really comfortable sharing it. They can talk to the media. They could be on the national news. And you see it. They are just it just flows. It just comes right right out to them.
Rebecca Flick:Yeah. It's usually not that laundry list, not in a bad way, of every single procedure.
Barb Collura:Right.
Rebecca Flick:And doctor visit, it's the I need a treatment. It it was not affordable for us. We had to delay. You know, those those moments of and those are thing those are hard things to admit. So there's a vulnerability too in our our advocates that you have to be comfortable with.
Barb Collura:Absolutely. So that, I would say, is first and foremost. Understanding just the legislative process, state versus federal. Is this something that we're going to be fighting for, for many, many years? Is this something that we're trying to prevent from happening? How do we pull and push on certain levers? And really just having a of a broad understanding. One of the things that you and I have learned over the years is that even lawyers, and I have family members who are lawyers, don't always understand the legislative process. So we are a country where this isn't something that we all retain. And so we love Resolve to train people in the legislative process and how things work.
Barb Collura:We're not just here, Hey, show up at 01:00 and say this. No. Who are these people? Why are you there? Why is this committee important? And it's an opportunity to really engage people in the democratic the process. So understanding that for me, I love people who are in it for the long game because selfishly, it's hard at RESOLVE to constantly have to train new advocates in a particular state or on a particular issue. But if you've got a core group of advocates who are showing up sometimes year after year, it helps because they've built relationships now with legislators. And that's what you need. That's what you want.
Barb Collura:So I I think the third thing is being in an attitude of, I'm building a relationship with these with these lawmakers, and I'm here to see this through.
Rebecca Flick:Yeah. And I think that takes a person too that understands the bipartisan bipartisan nature of our issues. That's how anything gets done in this country. And just being able to see the process and the message through not only your lens, but the lens of the other people in the community, I think, is important.
Barb Collura:Absolutely. Yeah. So I think we came up with my four or five things there that we can make our little our little Barbie advocate in a box, Rebecca?
Rebecca Flick:I love that. We have so many already. You know, I think, you know, this is a this is a hard question. I know there are probably lots of of desires and and wishes for the future. But when you look at where we are today, I mean, even right before this podcast recording, we get an email of a pretty awful bill in a state that is popping up.
Rebecca Flick:You, we survived Alabama, but there's still work to be done. The disinformation that's out there, the misinformation that's out there around ethical IVF. There's been such an uptick in the anti-IVF rhetoric and legislation in the past, you know, decade or so, but really, really heightened since Roe v Wade was overturned. Despite all of that kind of fear that some of us live in in terms of access to IVF, do you have a a wish for the future of the family building community around advocacy?
Barb Collura:So I'm going to answer your question and I'm not going to think about the forces that are against IVF because I have a wish for them. But I'm gonna make the wish for what you asked for, which is our community. And honestly, I don't think it's that different from things that I have said for many, many years, which is stay vigilant, stay engaged, stay involved. You cannot move an issue if we are constantly starting over every year. If we are at zero on January 1 of every year and we're trying to get to 100, that's really hard.
Barb Collura:If we have people supporters and donors and the community at large that's in this year after year after year, we're not starting at zero. And then we have the ability to then, quite honestly, move forward and move forward and move forward. I firmly believe that if there are enough people who are staying connected to RESOLVE, who are part of this community, who are raising their voice when we ask them to, that we are going to continue to see progress on our issues. We've seen a lot of progress in the last twenty years that I've been here. I'm really proud of that.
Barb Collura:You could look at it cynically and say, Gee, that's all you've done. And Rebecca, you and I have been on the other end of people waking up in a state that doesn't have a mandate. And they're pissed off because now they can't do IVF. And where was resolve? Where was resolve five, ten, fifteen years ago that would have made a big difference in their state?
Barb Collura:And I've had those conversations with far too many people than I care to admit who are mad at RESOLVE because I don't have insurance. Where were you? So I look at the map of The US and I forget which color we have it on our map that shows the states that aren't covered. And every day, we should be thinking about what happens today when somebody is told they need IVF. And they look around and they see this wonderful organization called RESOLVE.
Barb Collura:And they're like, where have you been? So we have to do this every day all over the country for our military, for our veterans, for everybody in every state. And you can't do that if we're starting at zero every year. So I say that to all of you who've been working in states where it hasn't happened yet. Don't give up. And if you're wondering if this is a movement that really needs you and values you, please know that it does.
Rebecca Flick:Did you wanna share your wish for the people, the forces that are against us?
Barb Collura:I I think they need to I think I think there's there's a lot of those voices we are never, never, ever, ever gonna change. It's just like on issues like gun control and abortion. And there are just some things that people are never ever going to agree to. I want them to be a very small minority. And I think that's what we can hope for is that we can find middle ground with a lot of those folks. And then I believe that our community is the majority, and we just need to show up and really flex that majority power that we have.
Rebecca Flick:Well, I know it's been an honor to work alongside of you and and get to become an advocacy person. It's, something that I think is in my genetics, that I'm really proud of. And to have a front seat, helping drive this movement is, like I said, an honor and a privilege. We are not saying goodbye, but you are saying goodbye to the, Infertility Discourse audience.
Barb Collura:Yeah, I've loved being on this podcast. It's been amazing to take a topic that, as we say many times on this podcast, that nobody else is talking about. And I so appreciate how you found the niche for this. We could have gone so many different ways with a podcast from RESOLVE.
Barb Collura:And the fact that you found the niche and the gap is super exciting. And I'm so honored that we've been able to educate people, inform people. You and I have heard from a lot of folks who said, oh, I learned this on the podcast. And to be a part of that has just I wish we'd started it like don't you kinda wish we'd started like ten years ago now? It was just last year, 2024.
Barb Collura:That's unbelievable. So my little podcast career is coming to an end. But I've loved it, and I've loved talking about these kinds of issues. It's been amazing. So you have been an amazing host, and I can't wait to continue to listen. You're on my on my playlist.
Rebecca Flick:Well, thank you. Alright. For now, we're gonna close out this episode. By the time it publishes, it'll have a a snappy title, and we will add another song to our our playlist. A playlist that I play often.
Rebecca Flick:It's quite fun. So if you're on Spotify, we have a musical playlist that goes along with this. But thanks for tuning in. As always, if you're so moved to do so, head over to resolve.org, hit that donate button, and give monthly if possible. It helps not only keep this podcast going, but the important advocacy work that we do.
Rebecca Flick:So take care.