SART Fertility Experts - RESOLVE and Infertility

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 Assistive Reproductive Technology, an organization dedicated to ensuring you receive quality fertility care. Welcome to SART Fertility Experts. I'm Bill Petok, a psychologist in Baltimore, Maryland, your host for this episode.

I'm very pleased to have Barbara Collura, the President and CEO of RESOLVE as my guest today. Barbara, thank you for taking the time to help SART provide up-to-date information about topics related to fertility testing and treatment, such as IVF. Well, it's such a pleasure to be here, and I'm honored that you invited me to join you.

Well, we think that RESOLVE plays an integral role in the care of people who are trying to build families. Barbara, let me start by asking you, how RESOLVE got started? RESOLVE, the National Infertility Association, is a non-profit patient advocacy organization. We were officially founded in 1974 in Belmont, Massachusetts.

A woman named Barbara Eck, who happened to be a nurse by profession, she was going through her own family building struggle. And, you know, honestly, I don't know if it's because she was a nurse, but she knew the power of connecting with other people. And through just women that she met in the waiting room at her doctor's office, keep in mind, this is 1972, 1973, she started inviting them to her home, and they'd sit around her kitchen table, and they would talk, and they would share.

And it became the very core support group of like-minded people. So that's fascinating because that's before IVF even happened. Yes.

That's really an incredibly interesting factoid that folks ought to be interested in. So we're talking about a program, a project, an organization that is 46 years old. Correct, correct.

And so, and you know, it's funny, her name is Barbara, I'm Barbara, and I've, I don't know, people have said, Did you start it? And I, I'm flattered, but I was, I'm happy to say I was a young little girl in 1974. But I, I'm so honored to, you know, the way I look at this bill is, is that, like you said, it's, you know, 40 plus years, I'm just here as the caretaker for this short period of time that, that I'm a part of it. Because there were people who came before me, obviously, there will be lots of people who come after me.

But I valued, I got value from the organization on my own family building journey. And so I love what we do. I love the difference we make in people's lives.

And I, I just feel like connect, you know, this is a, as a psychologist, the power of connecting with others and just realizing, wow, I am not alone, there are, there are other people going through this is powerful in and of itself. I think it's one of the more critical aspects of the organization that it gets the message that you are not alone and feeling alone is what many folks are when they're going through this. Barbara, tell us a little bit about the mission of RESOLVE.

So we have different areas of focus. When you think about the founding of RESOLVE, that support group, we still think of support as our foundation. So providing support and information to anyone who is struggling to build their family bill.

And I didn't use the word infertility because we are here to help anyone who is struggling. So at its core, it's that support. We still have those support groups that meet all over the country.

In COVID times now, we're doing it virtually. But pre-March, we had about 250 groups that were meeting every single month across the country, connecting with people together. So support is number one.

Advocacy is number two. We believe in people raising their voice, being empowered. That could be advocating to a legislator.

That could be advocating to an employer. That could be sharing your story with the media. So it's really finding your voice.

And we know that to get policy to change, to make lives better for our community, we need people to speak up. So a big part of what we do is inspiring people to share their story and to advocate. And then thirdly is that public awareness.

We started something called National Infertility Awareness Week. Some people don't know that RESOLVE founded that. So we founded that in 1989.

I can't even imagine what it was like to talk about infertility publicly back then. And that's a federally recognized health observance that happens in the spring, in April. But that's all year long, talking to the media, public awareness campaigns, and so on.

So support, advocacy, awareness are some key areas. 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. So you've talked a little bit about how support takes place, 250 support groups all over the country. How do you accomplish advocacy? I know that it was during Infertility Awareness Week, you had Advocacy Day.

Tell the folks a little bit about what takes place on Advocacy Day, pre-COVID, and most incredibly, during COVID. Well, I'm going to talk about our Federal Advocacy Day in 2020 because it was something to behold. It was amazing.

We host a Federal Advocacy Day in Washington, D.C. Interestingly, a lot of our advocacy takes place in state capitals, but our Federal Advocacy Day is a big gathering. We do it in partnership with ASRM. People come from all over the country.

We get them to come. We provide them a lot of training before they get to Washington, basic things like how a bill becomes a law. Why are you talking to these legislators and those legislators? What's the difference between the House and the Senate? Then we give them specific talking points for their meetings with their legislators.

What's so cool about it is that you're grouped with people from your state. You're part of this state delegation. You're never alone.

This delegation becomes like your little family that day. That's what it looked like pre-2020. I think in 2019, we had close to 240 people who came from all over the country.

It's a mix of about half of those people identify as professionals. They might be physicians, nurses. They might work for some pharmaceutical company or they might be an attorney.

Then the other half are people who've gone through this journey or friends and family. This year, we clearly were not going to bring people to Washington, D.C. In fact, Congress wouldn't allow it. We switched to virtual.

We ended up, Bill, with more than 400 advocates registered. We had all 50 states represented. That means we were requesting meetings with every single Senate office and a huge number in the House.

We still had this incredible feeling of togetherness with our state delegations. They met via Zoom. They got to know each other.

Then on that day, they did phone calls one right after the other with legislators from their state. We advocated for six issues, all of them having to do with some aspect of family building. Some, it was research funding at NIH.

For the most part, it was very specific pieces of legislation that would really help people in our community access care and just afford what they're family building. It sounds like incredibly successful and speaks to the creativity of people who are on a mission to influence the influencers, you know, to get to Congress, get to the Senate, make people pay attention to the fact that this is a problem which affects a significant number of people in this country and around the world. You talked a little bit about the support groups before.

Tell me, how can a person get support? What does an individual need to do to access a support group? First of all, it's realizing and recognizing that connecting with others is going to be a good thing. It might be a friend who recommends. It might be somebody like yourself that is saying, hey, connect with folks.

I know I had a physician who said, you know, maybe you should connect with some other folks. It's that desire to connect with others. There's a couple different ways.

If you're wanting that face-to-face right now, obviously that's going to be a little more virtual, but we also have an online support community which we've had for years. The first thing to do is just go to our website RESOLVE.org or check out one of our social media presence. We're on, you know, Facebook, Twitter, Instagram, and you can ask, hey, how do I find out about support groups in my area? We have a map of the United States on our website, so you can look and see where we have support groups.

There's information about the online support community and how that works. So it's a matter of matching you with what your preference is and then where do you live. With COVID, Bill, we've launched new virtual support groups that are national in scope as well as all of those individual ones that we're meeting in person.

Those folks are also doing virtual, but you may hop on once a month to one of our big virtual ones, and you're going to get put into like a breakout room. It'll be a volunteer hosting it. It'll be for about an hour, and it's free-flowing.

There'll be, you know, maybe some prompt kind of questions, but it's really about sharing what you're comfortable with and learning from others and supporting each other. And so in that live support group, it's the same sort of thing. It's a volunteer that's helping host it.

They're helping get people talking and sharing and finding out what's on their mind. You know, you know this so well. It could be that you walk into that room and somebody has just, a family member or a friend has just said something to you that's very hurtful.

Maybe you've got a baby announcement and it just triggers you. So there's any number of things that you're going to bring to that support group environment to share and to work through. I know I've been a speaker at a number of support groups here in the Baltimore area, and from time to time I know you bring in professionals, people with expertise.

They may be physicians. They may be mental health providers. They may be attorneys who serve as sort of an expert for the evening, and that's a great asset, I think.

Absolutely. Finding a trustworthy source for fertility information can be overwhelming. ReproductiveFacts.org, a patient website developed by the American Society for Reproductive Medicine, has the medical information you need for your family building journey.

At ReproductiveFacts.org, you'll find up-to-date videos, fact sheets, and answers to frequently asked questions, all developed by medical experts based on scientific evidence without commercial bias. For your fertility questions, turn to a source you can trust, ReproductiveFacts.org. Tell me a little bit, I know there are other support groups that float around there, Facebook groups and things like that. How would you say RESOLVE groups differ from those independently created groups? Well, first I just want to say that it's most important for people, I think, to find your tribe, to find your entourage, to get support in this journey.

Everybody is going to be different. There are some groups out there that are faith-based and they are connected to a specific church, and so that's very important for individuals. There are ones where people have the very similar diagnosis as you.

So I would say, first and foremost, find support. Some people, a peer-led support group is not needed. They might be in an environment with friends or family where they're feeling connected and they're getting that support.

I know I went to a mental health professional, and that was what I needed at that time. And so I just want to say that there are a lot of ways out there for people to connect. You mentioned Facebook, there are, I don't even know how many, there are so many private Facebook groups where people are getting support and all of that, all of that is good.

What's gonna be a little bit different about RESOLVE is that, as we mentioned, kind of pre-COVID, our goal was to try and bring people together face-to-face. It's an opportunity to meet and connect with people in your geographic area that you may end up connecting with for years to come and so forth. Also, this is not the personal agenda of any particular faith or individual who has started it.

We have, it's free, you're here to come and go. And so sometimes people like that, knowing that it's like a national nonprofit, you have standards and there are ways if you're feeling like something has gone wrong, you have somewhere to go to voice a compliment or a complaint. So it's all what is right for you.

And for us as an organization, we're not gonna give up providing those support groups. I still have yet to find any other organization who's able to have that kind of reach. And we provide connection and training for all of those volunteer hosts so that they're not alone either.

So it's a matter of, Bill, what you're comfortable with and what you want and if RESOLVE is the best. So basically what I'm hearing you say is your advice is do a little bit of shopping, see what works for you. We hope we offer you what's going to be useful, but we know we're not one size fits all and somebody may need something that's just a particular situation.

And Bill, I think you would agree the bottom line is fine. If you don't, whatever you're trying, if it's not fitting, working for you, then try again. Information is an important function of what RESOLVE does.

Where can a person find information from RESOLVE? Is that the best place, the website? Right. I mean, the website is really our home for everything. We use our social media channels more for giving out information about, we have a lot of events, we do a lot of policy work, and we let people know about that.

We also give a lot of great information via our social media channels. But it's really, go to the website, RESOLVE.org. We're going to share all different ways to build your family, provide you with really great information, resources, as well as, obviously, the power of support and emotional support. We also have listings of mental health providers all over the country.

And then, of course, all of our advocacy work and how to get involved and engaged. So it's sort of a site that has all of this health information and family building information, but yet then it has, you want to take action, you want to get involved, here's how to do that as well. So it's got both of those roles happening on that website.

And I think it's, I don't want to say we're the only site, it's kind of a gateway site that can help you also navigate some other great resources. Well, and there's no specific agenda with the RESOLVE site other than get the support you need, here's the information that will help you with that. You're not selling anything to anybody, although you're willing to take donations.

I'm sure. We are not selling anything, but yes, charitable contributions are always appreciated. Sure.

Who creates the information on the web pages that provide the technical stuff? We, if it's specific to a technical, medical, mental health, we find people like yourself, we find SART members, we find nurses, pharmacists, physicians, embryologists, mental health providers, who over the years have created a lot of fantastic content. I will tell you if you're looking for, you know, the most technical cutting edge, I need to know about how PGD, you know, with this kind of condition, you're not going to find it on our website. We are not pretending to be the expert on every single thing.

I think, again, it's one of those places where you come first, and you sort of get the landscape, and we're a community. And then that starts leading you down different paths, depending upon, you know, what you're interested in. But our content is going to be, most of that very specific content will have the name of the person right on there who helped write that, and making sure that it's as complete and accurate as we can possibly make it.

So it sounds like it's a great place for somebody who's starting a family building journey and is sort of overwhelmed by the acronyms and the technical stuff to sort of scratch the surface really well, get oriented, and then they're informed enough to start looking at some of the deeper stuff and perhaps other sites. Bill, that is exactly right. In fact, we have on our website questions to ask on at your first appointment with your doctor.

So it even starts, you know, before that where you're just like, gee, should I see a specialist? What should I be asking them when I go? That's the kind of content you're going to find. And then if at some point in your journey you have to switch gears, and maybe you're going now third party, or maybe you're going adoption, you come back to the and it kind of helps you navigate through that next phase of your journey. I know that you have a personal assessment tool on the webpage.

I wonder if you'd speak just for a little bit about what that does. So we have five, I think it's five questions for men, five questions for women, and it was designed with input from medical professionals. And it takes you through some questions.

And the point of it is, should you see a specialist? Should you take your care to somebody other than maybe a general practitioner, or in the case of a woman, an OBGYN? And, you know, it's very simplified. It does not replace any kind of medical advice. But sometimes you just, you need an extra, I don't know, an extra perspective to either comfort yourself or kind of motivate yourself to decide what should I be doing next.

And so that assessment tool does that. That sounds really great. Barbara, this episode's being recorded during the COVID pandemic, which has increased stress for lots of folks, particularly because at one chunk of time, clinics, many clinics were out of concern for transmission of the disease, not providing services.

So stress levels have gone up for all of us across the country, and particularly for some folks who are trying to build families. Tell me a little bit about what RESOLVE has done to help people with that extra stress brought on by the pandemic. Well, it has been, I mean, you know, we're so tired of saying these same words, but it has been unprecedented, extraordinary times.

And there's no playbook for how to run a non-profit in a global pandemic or a medical society or a fertility practice. So the good news is we were all in the same boat. But we, I think the first, you know, when I think back, Bill, the first thing that hit us in March was the emotional needs of our community.

And we immediately created content, very, very short, 20, 30 minute content webinars with mental health providers and a nurse. And it was just really how to take care of yourself, what to do. We released those, I think, in mid-March.

And it was first and foremost, wow, this, you got to take care of yourself and kind of here's what you need to do. I also was a guest with the mental health professional group of ASRM. They did a webinar on kind of coping and so forth with Dr. Anne Malav‏e.

And, you know, that was excellent content as well on what you should be thinking about, what you should be doing, how you should be taking care of yourself. So again, the theme really was mental health and how do we support this community? That's when we launched these new national virtual support groups. And we do them one on the East Coast, one on the West Coast.

And, you know, with Zoom, you log in and you get put into all these different breakout groups. So we've got, you know, we can have hundreds of people in these breakout groups. And that, we immediately started getting feedback from people that said, Wow, I, I feel better after this hour of being in this, in this group.

So I think that was our initial. And then we, people just were like, what questions should I be asking my clinic? What, how do I, you know, what should I be doing? So we put out some content about, you know, questions to be asking your, your clinic that might be closed, just basic stuff. But the people were like, kind of frozen, if you will, and feeling like, I'm not even sure, you know, what I can or should ask.

We, we recorded a webinar on telehealth, how to maximize telehealth, how does it work? Is it covered by insurance? How should I prepare? You know, give me an example of what it's going to be like. So we did, we did one with a physician on telehealth. So it was trying to meet the needs of our community at that moment, with the right content, the right kind of support.

And, and then here's a crazy thing. So we had National Infertility Awareness Week, the third week of April. And people were like, Oh, you gotta, you gotta cancel that, you know, you gotta move that you can't, you can't have that.

And we are National Infertility Awareness Week that RESOLVE puts on, we don't have any physical events, but a lot of people do. Right. A lot of people around the country use National Infertility Awareness Week to do open houses and have seminars and, and all of that.

And so we, we decided, we're going to keep it. And thankfully, it was so needed, Bill, and the community just, oh my goodness, it globbed on, there was so much positive stuff coming out of social media. Clinics, just, just, oh my goodness, they took it to a whole nother level.

And I think it was like a huge hug for the community. And it was just at the right time. And I'm so glad that we hosted that.

And we chose to keep it and, and, and really get our community engaged. So it was, it was, you know, honestly, it wasn't like we sat there and said, OK, in 3 weeks, we'll do this, in 4 weeks, we'll do this. It was a mishmash.

And sometimes things, we came up with an idea on a Thursday, and, and looking at the needs. And then we did a patient survey in there as well, and got some really great insights as to what patients were needing and feeling. And hopefully, that was helpful as well.

Well, it speaks to the flexibility of the organization. And one hopes that the resiliency there is something that translates into something that folks trying to build families can utilize. If you bump into a, an obstacle in one place, you can go around it, you can go over it and go under it.

There's an old song we used to sing at camp, I think that goes like that. Can I just, can I just say one other thing that was, that was, so one of the things that we realized is that state governors were putting out a lot of regulations around accessing medical care. And it was very inconsistent from state to state.

And even within states, we would talk, be talking to physicians, at different practices in a state, and, and one would say, well, I can do this. And the other would say, well, I can't do that. And it was the same message from governors.

So we reached out to the National Governors Association here in Washington, we sent them a letter. And now we, we've been working with them since on, on how to advise governors on our field of medicine. So we also encouraged people to reach out to their governors through our website, we had an action alert system that they could send a letter.

And we had, I think, over 30 governors, so that'd be 30 states that received letters from advocates. So it was a, it was, it was where we thought our voice, where we could make a difference, Bill, is where we put our energy. Well, and that, that speaks to the, the awareness component of RESOLVE, because you're targeting a significant number of leaders within states, you're getting 30 states, you're getting a significant number of governors who now are more aware of the needs of the people that they serve.

Absolutely. That's, that's really great. Barb, what do you consider to be the most difficult things that people have to navigate when they're getting treatment for infertility or for family building? Oh, boy, I think it's a dual crisis of, you know, just the mental health component, and then the financial component.

Unfortunately, either one of those can really play a huge role in how you choose to build your family. What, what path you take, where, where you come out at the end of this, you know, our goal is that your journey gets you where you want to go in the least amount of time, spending the least amount of money, and feeling, you know, at the end of it, that you have your, your mental health intact. And, and so if you, if, if you have that as your goal, the financial piece and kind of the mental health piece throw you so many curveballs, that it becomes, it can become incredibly difficult to reach the goals that you're wanting.

So from my perspective, and what I see at RESOLVE, that is, those are the two consistent threads that, if you will, if you think of like a piece of thread that's weaving through every single person who is struggling to build their family, every single person. And it's, it's interesting because we know that the technologies for helping people create families are very sophisticated. In fact, most programs, most clinics employ many, many people in order to help create that one baby.

And some clinics are forward-thinking and have mental health providers who are part of their staff. Some people refer out to those of us in the And it's a significant challenge, obviously. And then you're, you know, the other part, you mentioned access to care via the cost, two big issues for people.

Barbara, I want to thank you for joining us today. This has been incredibly informative where I've known about, and we've known about the work that RESOLVE does for many years. And we want to bring it to a larger audience because we do think it's important to consider the whole person, not just the reproductive system as we go forward with folks helping them build families.

I hope those of you who are listening have found the information that Barbara provided about RESOLVE useful and find time to check out the RESOLVE website at RESOLVE.org. I'd also be remiss in not reminding you to visit the SART.org website for more information about SART and our resources for patients and others interested in family building information, all of which are provided by SART fertility experts. Thank you for joining us today. Thank you, Barbara.

Oh, it's been my pleasure. And thank you so much. We are great partners with SART and with ASRM.

And I am really grateful that you all chose to hear about RESOLVE and see how it can help the community that we both serve. 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.