Ep 8: The Fair Access to Fertility Treatment Act with Betsy Campbell
Fertility Forward Episode 8:
Today on the show we welcome Betsy Campbell, who has spent her career working for non-profit organizations and her free time volunteering for worthy causes. Her experience in public relations, fundraising, and volunteer management span a wide range of sectors, including healthcare, social service, philanthropy, politics, and organizations such as Mount Sinai Medical Centre, American Hospital Association, Chicago Foundation for Women and Emily’s List.
Rena: Hi everyone! We are Rena and Dara and welcome to Fertility Forward. We are part of the wellness team at RMA of New York, a fertility clinic affiliated with Mount Sinai Hospital in New York City. Our Fertility Forward podcast brings together advice for medical professionals, mental health specialists, wellness experts, and patients because knowledge is power and you are your own best advocate.
Rena: Betsy Campbell has spent her career working for nonprofit organizations and her free time volunteering for worthy causes. Her experience in public relations, fundraising and volunteer management spans a wide range of sectors, including health care, social service, philanthropy, politics and organizations such as Mount Sinai Medical Center, American Hospital Association, Chicago Foundation for Women and Emily's List as results chief engagement officer. She's responsible for empowering constituents to make a difference. They're volunteering and advocacy. Her secondary infertility issues were resolved, and her three daughters inspire her to make a difference. In this episode, we talked with Betsy about the Fair access to Fertility Treatment Act and insurance reform in New York, how to get involved in advocacy and with insurance reform and working with employers on insurance reform and how to speak up and make the ask for insurance coverage.
Rena: We are so excited to welcome to fertility forward today, Betsy Campbell Resolve’s Chief Engagement Officer. Betsy, thank you so much for joining us all the way from DC. We're so happy to have you on.
Betsy: Thank you for having me delighted to talk with you, Rena
Rena: I know what we're gonna talk about is going to resonate so much with our listeners, especially those that are in New York State since we just are going through now, the recent passage of FAFTA or the Fair Access to Fertility Treatment Act, which is so exciting.
Betsy: Very exciting. Yes.
Rena: So I would love for you to tell our listeners about FAFTA what that is. I've been involved with it myself for a couple of years and advocating for it and I'm so excited to share with my patients that it passed.
Betsy: Yes, we're very excited about it as well. The Fair Access to Fertility Treatment Act is legislation that Resolve and our advocacy partners have been working on since 2016 to update New York's infertility insurance law so that it covers IVF and also fertility preservation for cancer patients and others at risk of medically induced infertility. New York's current insurance law specifically excludes IVF, which, as you know, is the state of the art treatment for many infertility patients. But thanks to that outpouring of support from patients and professionals like you, including at Resolve’s largest state advocacy day ever in Albany this year coverage for IVF and fertility preservation was included in the 2020 New York state budget, and the new law takes effect on January 1st 2020.
Rena: This is so exciting and I have to tell you, When I heard the news that it passed, I cried because as a patient in New York state, I had no insurance coverage and you know the cost was astronomical. And, you know, I continue to have patients today that I see in practice, who have to discontinue treatment because they can't afford it, which breaks my heart every time.
Betsy: Absolutely. We know that cost is the number one barrier to care, and we believe that everyone deserves the right to build a family, and it shouldn't matter what state you're living in. So and New York has some of the best medical care, fertility care, cancer care that it absolutely should you know New Yorkers should have access to the state of the art treatment
Rena: And we're pretty behind, right? Because most states now do you have coverage? So New York is very behind in this.
Betsy: Well, there are now 11 states that provide IVF coverage. So, you know, New York probably should have done this, you know, a while ago. The mandate was last updated in 2002 and certainly we know there have been so many medical advances since then that, you know, the New York law was pretty archaic and needed updating. So the law now requires, effective in January, that IVF be covered by health insurance provided in the large group market and that medically necessary fertility preservation be covered in the large group, small group and individual markets. And more specifically, it provides up to three IVF cycles, fresh embryo transfer or frozen embryo transfer, to people who get their health insurance from a fully insured employer who has coverage on the large group market. And these are companies with 100 or more employees. And this is about 2.5 million New Yorkers who now will have coverage to IVF. So that's very exciting.
Rena: It's so exciting and I guess for those that don't know, because I certainly didn't know before I went through this. Let's sort of talk through a lot of a lot of these, you know, phrases you're throwing out ok a large group market. What is that?
Betsy: So when you're looking at insurance, the first thing to find out is if your company is fully insured or self insured, because state laws like this only applied to fully insured companies, so self insured companies are exempt from any state laws. So that's because self insured employers pay their benefit claims directly, although you know and take on the risk. Although they may hire an outside insurance carrier to serve as the benefits manager so you can't tell by looking at the policy name you actually need to ask your HR whether they're self insured or fully insured. And generally speaking, most companies with 1000 or more employees are self insured, so they're not bound by any state mandate. So a fully insured company is where your employer is getting their coverage from an insurance company, and then the insurance company, you know, dictates what will and won't be covered through a standard benefits plan. So the insurance company is taking all the risk of the plan, so it's considered fully insured. So that's the first question to ask if you want to know if this new law impacts you, then also for the IVF coverage, it only applies in the large group market. So that's employers with 100 or more people. The fertility preservation piece of the legislation covers all commercial plans, so large group, small group and individual market. So people on the so called Obama care exchange that small group and individual markets.
Rena: Okay, so there's certainly a lot of nuances to this bill, and it sounds like there are kind of three main questions to go to your HR and ask, which is: Is your company health insurance provided controlled by New York State? Is the health insurance plan fully insured?
Rena: And is the company part of a large group market?
Betsy: We have a wonderful video.
Rena: I was just gonna say all of that can be found on the video.
Betsy: Yes, on Resolve.org’s YouTube channel.
Rena: Yeah, it's a very it's an awesome two minute-ish video which breaks all this down very user friendly, and we will definitely put a link to that on all of our channels too and direct all of our listeners there because it's really helpful.
Betsy: Thank you
Rena: Of course. And then you also mentioned the medically necessary treatment piece.
Rena: Can we let’s further explain what that means to our listeners.
Betsy: Sure. So it provides coverage for medically necessary fertility preservation treatments for people facing what's called iatrogenic infertility, which is infertility caused by a medical intervention such as radiation, medication or surgery. And that would apply to all commercial markets, as I mentioned. So for individual and also small group and large group markets in the fully insured market, so that actually will protect 4.7 million New Yorkers so we’re excited about that. It's just unconscionable that when someone gets a cancer diagnosis during their reproductive years, they have a very short window of time to be able to preserve their eggs and sperm before they start chemotherapy or radiation. And in the past, you know there isn’t insurance coverage and you can't, you know, at the drop of the hat always come up with 10,000 or more dollars to be able to preserve your fertility. So this provides insurance coverage for patients at risk of infertility from medical treatment.
Rena: Oh that’s fantastic, and you mentioned sperm as well as eggs. So does this cover for men as well as women?
Betsy: Exactly. Exactly. Anyone who needs to preserve their fertility eggs and sperm are covered before undergoing cancer treatment. The entire law prohibits insurers from discriminating based on age, sex, sexual orientation, marital status or gender identity.
Rena: Oh that’s so wonderful.
Betsy: Big improvement in access to care for the family building community in New York.
Rena: Oh that’s huge. And I can't even tell you I love telling my patients and giving them this tool. Don't lose hope. Talk to your companies. January 1st this is going into effect. You might be covered. I mean, they just light up with hope. It's already making a huge difference.
Betsy: Absolutely. And really, it happened because of the hard work of so many patient advocates like you Rena, Physicians, Partners and a coalition that reached more than 50 organizations and Resolve and our coalition is committed to still keep working to try to get IVF coverage in the individual and small group markets as well.
Rena: Sure. I mean, there's certainly still work to be done, because I know it's covering a lot. But there are still definitely many people without coverage.
Rena: And let's also, you know, tell our listeners too okay, so we're talking, okay, this bill has been passed. It's amazing, but I want to communicate to them all of the hard work that went into this, how this came to fruition. How Resolve made a bill and is changing, you know, the dialogue and changing coverage. How did that happen?
Betsy: Right. Well, it didn't happen overnight. It definitely takes a village. It takes a coalition of patients and professionals and like minded organizations that want to serve the family building community. It takes a lot of resources you know, we’re able to mobilize patients. We needed to hire a lobbyist, someone who was there on the ground every day in Albany. We made you know, dozens of trips to Albany. I know Rena you traveled from Manhattan to Albany, which is not always easy. People met in districts with their lawmakers. As I mentioned before, we actually did an advocacy day every year for four years, and this past year we had our largest state advocacy day ever with 100 people who basically traveled to Albany on their own time to talk with key lawmakers about why this law is so important and why the status quo had to change that you know, infertility is a disease and should be covered by insurance, like other diseases and also people that have conditions that or are in situations where you know they are struggling to build a family then, you know, cost should not be a barrier to getting the care that they need. So it took, you know, a lot of passion and commitment. And as I said, we won't stop until we cover everyone.
Rena: Well,I know you're certainly not going to stop. And I think something you touched upon now is infertility is a disease, which I think a lot of people still don't understand or know. And so I hope also from this bill, you know, it changes the dialogue and gets that out there. You know, it helps to take away the shame and the stigma that goes with it and, you know, increase understanding for patients of those family members and friends,
Betsy: Right. Right. No, it absolutely is a disease. It's recognized by the American Medical Association, the American College of Obstetricians and Gynecologists, the American Society for Reproductive Medicine and the World Health Organization. So you know, we believe that it should be covered just like other diseases. So we're working not only in New York, but in many other states as well.
Rena: So that's I mean, it sounds like there's still work to be done. So if somebody listening now wants to get involved, what should they do?
Betsy: Yes, well, please contact Resolve. We can be reached at info at www.resolve.org. We’re actually putting the finishing touches on a state advocacy toolkit to help patients and professionals advocate for coverage in their states, and we can connect ah, them with others in their state who want to do the same thing and really, the most important the first step to getting legislation introduced and passed is educating your lawmakers by sharing your family building stories. And, you know, Resolve has the tools to support you in this effort. And for those people who work for self insured companies, we also have resources to help you. You know, the best way for to get these self insured companies to provide coverage if they don't already have it is simply to ask to ask HR to add family building benefits, whether it's for IVF, adoption or surrogacy. Often it takes one person making the ask for a company to add these benefits. We've seen it time and time again that one person making the ask truly works. So we have Resources on our website www.resolve.org/coverageatwork. We have a tool kit for both employees and employers. It includes sample letters and studies that show why this is important to employees and why it makes sense for employers to add these benefits. So that's another route to take for trying to get family building benefits at your place of employment.
Rena: So you really make it so easy for people to get a toolkit and ask. Although I do know, you know, from speaking to people that can often be the hardest thing they say, well, I don't want to go to my HR because I don't want them to know that I'm trying to have a baby or build a family. You know I’m not comfortable sharing that.
Betsy: Right, and we understand people don't want, for example, maybe their boss to know that they are hoping to get pregnant and then need to go on maternity leave. But conversations with HR are confidential, and so you should feel comfortable in letting them know that this is something that is impacting you and that you know, employers want to know what their employees want and, you know, we know based on lots of surveys that you know, health care benefits employees value even more than raises than salary increases. So it's important for HR to know what their employees want. And we're seeing lots of employers adding the coverage because it makes sense. It makes for a more loyal and satisfied workforce. People are staying in their jobs longer. Those that have IVF coverage stay with those employers longer. And, you know, they're just lots of benefits to the employer, not to mention the employee.
Rena: Well I certainly agree with you, and it seems like you know, I’ll repeat what you said, which is that an HR conversation is a confidential conversation, so you know someone going to speak to HR shouldn't worry that then you know their boss will find out and they'll be, you know, discriminated against.
Rena: And of course, it's scary to come forward and ask for help and be brave. But I think, as you said to look, it takes a village. And one small voice also can create a huge change.
Betsy: Absolutely. And really, you know, no one cares more about the issue or understands their employer better than the employee advocate. And we just have story after story of people having success just in the past few years that we've been tracking, we know that more than 132,000 employees have better family building benefits because they asked their employers to add coverage those are just the people we've heard from
Rena: Woah that’s huge.
Betsy: Yeah, it is. And Resolve recently hired a full time staff person to manage our coverage at work program so she can provide individual guidance to employee advocates and employers. So we really expect that number to skyrocket, and we hope that people will contact us and download our toolkit.
Rena: Yes, and then I think as you said too, you know it's going to make the ask, and it's not then having to do extra work to present to HR. Why? Because you already have done that for everybody.
Rena: So all they have to do is print the
Betsy: White papers. We have surveys, we have the stats. We know that it's a minimal cost and that actually the savings from retaining employees or, you know, we know that in states with IVF coverage, the rates of multiple births are significantly less. So By providing this coverage, you're avoiding sort of the downstream costs of more expensive maternity and pediatric care.
Rena: Right. And then so it's so easy to get involved in, You know, just from personal experience. I you know wanted to get involved with something when I was going through it. Resolve the National Infertility Organization. They popped up. I got involved within five minutes. They made it so easy.
Betsy: Well, we wouldn't exist without volunteers like you, both people that are still on their journey and those who have resolved and want to give back. So, you know, it really is a wonderfully passionate and compassionate community to be a part of. We have the best volunteers and welcome everyone to get involved.
Rena: It is. It's so wonderful to be part of the Resolve community. And I think also for people on the journey as well as people that want to give back, you know, this is a way to really kind of take back that control and feel in control, you know, from a time if you're going through a time of feeling out of control or coming out of a time of feeling out of control, advocating volunteering, being involved is really a way to empower yourself and take that back.
Betsy: That is so true. So well said. I think, as you know at our advocacy days, they're probably some of our most inspiring, empowering events where people find their voice. You know, we definitely, you know, prepare people in advance. And it's just wonderful to see you know, the sense of power that one gains from a disease that often makes us feel out of control and helpless. So it's the same with our support groups, just being in the same room with other people who get it and taking away whatever you know stigma you may have felt or shame. There is no such thing. This is a disease that one in eight couples struggle with, and people should have access to the standard of care, and cost should not be a barrier
Rena: And I'm so glad you brought up the support groups too and the power of connecting with other people. You know, I think this really is a unique, shared common bond. And, you know, I often say it's the sorority you never wanted to belong to.
Rena: But once you’re in you know you find this sort of sisterhood in these connections and it's very powerful.
Betsy: It is. It's so true. We have, I think, just under 300 support groups across the country both peer led and professionally led groups, we have a robust online support community. It's really how Resolve started, you know, 45 years ago, a support group around the kitchen table. And you know, we've stayed true to our roots. And, you know, our goal is to provide support, education and advocacy on behalf of the family building community.
Rena: You do so much, and I love having you as a resource to refer patients to you. You know I say just go to the Resolve homepage, find a support group in your area. There's all sorts of different ones, and it's so easy.
Betsy: Well, thank you for doing that. You know, it's always interesting when some people, you know, come to volunteer and say they wish they had known when they were on their journey. And so we're so glad that they're people like you, Rena, that are talking to people in the middle of their journeys or starting out on their journeys and directing them to Resolve so that they, you know, immediately feel less isolated and feel part of a community that is there to support them and guide them as best as possible through this journey.
Rena: Well, you know, I think you know, I got into my field because of my experience and finding a lack in what I needed. And so my goal is just that. No one should feel how I felt and to get them and say there are resources out there. You don't have to feel alone. There's plenty of support. Here's tools. Here's coping mechanisms. You're not alone in this, you know, as you said that’s one in eight couples. It's huge.
Betsy: It is, and you know we need to talk about it so that it's not in the shadows and we need to break the silence. And, you know, I think we're seeing more of that. We know that more employees are demanding this coverage and employers are providing it and you know, that's what it takes speaking up and making the ask. And if you're in a state that doesn't have insurance coverage, we wanna work with you to change that. And we want to continue to work in New York to reach everybody else that isn't covered by this law. So we welcome everyone thio advocate with us.
Rena: So there's certainly no shortage of work to be done.
Betsy: No, no.
Rena: And then I was gonna ask you also, so what are the next steps for FAFTA? You know now that this first phase has passed. It's amazing what our the next steps?
Betsy: The original New York law I mentioned specifically excluded IVF. So you know, other treatments, such as IUI were covered and so forth and the diagnosis was covered. But back when the law passed originally in the 1990s and then updated in 2002 IVF was excluded. So our bill champions who introduced FAFTA have also introduced legislation that would strike that exclusion as a first step for trying to get coverage in the individual and small group markets. We’re also working with the administration to try to get the state to pick a benchmark plan that includes IVF coverage. You know through the exchanges and Obamacare at certain intervals, states are able to pick a new benchmark plan. The current benchmark plan does not include IVF coverage, so we would like the state to pick one that does. Interestingly, state employees have had IVF coverage for quite a number of years. So finally, some New York citizens are getting the same coverage as New York State employees. But we believe that every New Yorker should have the same coverage that state employees get. So we're working on both those fronts on the legislative route as well as the you know, the regulatory and, you know, through the Affordable Care Act as well.
Rena: Okay, so it sounds like there will still be an advocacy day in Albany next year.
Betsy: There could be. We're also working on the child parent security act to try to lift that ban on compensated surrogacy. So I know that we’ll be in Albany for that. And then we're going to be, you know, scheduling meetings, I think throughout the year, rather than necessarily have just one day, I think our goal is to try to, have a constant stream of meetings, So, yeah, we will keep everyone posted in New York because we know that when we announce an advocacy day, people are ready to drop everything and go to Albany, which we are so grateful for and believe it's really time well spent.
Rena: Sure. And I know people you know are so excited for the changes. And I know I think this has been so informative for people both in New York State and out of New York state. You know, for all those states that don't have coverage, you know, now they know how they can get involved. The potential to create change,
Betsy: Absolutely. And I know some of the terms that I've tossed around insurance can be very confusing. And so we do have a lot of information at www.resolve.org just so you know, you can familiarize yourself and be the best advocate possible, either with your employer or with your lawmakers.
Rena: Sure and again we’ll share that information on our channels. The link to the video, which I think is so informative and really breaks down for you the three main questions to ask your employer, which is a great starting point just to know okay, is this law January 1st isn't going to affect me or not. And that's, I think, a great place to start.
Rena: So is there anything else you want to share with our listeners about Resolve what you're working on? I think this has been so informative and hopefully lit a fire under so many people to advocate for change and speak up and become a part of this movement.
Betsy: Thank you. Really. That's what our goal is. We want to ensure that all people challenged in their family building journey reach resolution through being empowered by knowledge, supported by community, united by advocacy and inspired to act. So we really appreciate your helping us get the word out.
Rena: Thank you so much for coming on and sharing and all of the hard work that you do!
Betsy: Well, thank you, Rena, for all you do. And we'll look forward to continuing our important work together.
Rena: Sure, And before we wrap up, I always like to end the podcast with positivity and asking our guests to share a gratitude. So something you're grateful for today or any time with our listeners.
Betsy: Oh, sure, I am grateful every day for Resolve volunteers. I always share with my colleagues and anyone who asks. I just feel like I have the best job in the world because I get to work with the most passionate and compassionate people that I've ever met. So I'm grateful for the volunteers who bring the resolve mission to their communities.
Rena: I love that. That's a great one.
Betsy: Thank you.
Rena: And I will say that I am grateful for you and Resolve. Your organization saved me, it gave me a purpose at a time when I just did not know how I was gonna go on. And I love it today as a resource to send patients to and I'm so grateful to have the ability to work with you, for you guys always being so open to any opportunity being willing to work with myself with patients, anyone I send your way and so have you, you know, working for infertility, you know, as a whole in getting the word out and speaking up for people who can't speak up for themselves sometimes.
Betsy: Exactly. Well, thank you. Well, that's very inspiring to hear and we look forward to continuing this important collaboration.
Rena: Thanks, Betsy.
Betsy: Thank you, Rena.
Dara: Thank you so much for listening today. And always remember, practice gratitude. Give a little love to someone else and yourself. And remember, you are not alone. Find us on Instagram @fertility_forward. And if you're looking for more support, visit us at www.rmany.com and tune in next week for more Fertility Forward.