SART Fertility Experts - Advocacy and Reproductive Access

Welcome to the SART Fertility Podcast. My name is Dr. Kristen Slater and today we're going to discuss a very important topic for both individuals and the whole world population. We're going to discuss access to fertility care and we're fortunate enough to have Betsy Campbell talk to us today.

Betsy Campbell is a Chief Engagement Officer at Resolve, the National Fertility Association, a non-profit organization with the only established nationwide network mandated to promote reproductive health and ensure equal access to all family building options for people experiencing infertility or other family building challenges. And Betsy oversees Resolve's access to care programs. She guides public policy for Resolve as a recognized leader on insurance coverage, which is not an easy thing, family building legislation, and not always easy either, and coalition building.

Betsy has 35 years of public affairs and non-profit management experience and she received her degree from Princeton. We feel very fortunate to have her here. So welcome, Betsy.

Thank you so much, Dr. Slater. Glad to join you. Perfect.

Well, this is an exciting time for fertility. There's been lots of changes and just going to pick your brain on this is your bread and butter. So I know you've committed a time and efforts, which everyone appreciates this, but we just wanted to initially ask you, what are the barriers to people getting fertility treatments? We know there's barriers.

Yes, yes. Well, the biggest barrier to care for the infertility community is cost. And that's because most insurance policies don't cover infertility.

We know, as you know, infertility is a disease and should be covered by health insurance, just like other diseases. And fertility treatment is also needed for the LGBTQ plus community and unpartnered individuals to have a baby. So this medically necessary treatment should also be covered by insurance.

Another barrier in some communities is the stigma associated with infertility, still a stigma. So it's important that we talk about infertility and the challenges associated with family building. So it's normalized and that people seek care sooner rather than later, because time is not on the side of infertility patients.

And in addition, many insurers still use a heteronormative definition of infertility requiring a certain number of months of heterosexual intercourse. So this creates additional obstacles for the LGBTQ plus community and unpartnered individuals to access care. We're hopeful that this should start to change with ASRM's updated definition of infertility that is inclusive of same gender couples and single people.

So hopefully that barrier would no longer exist. Yeah, I agree. I was really happy to see that new definition.

It was very inclusive for all. Yes. And do you know what percentage of people who need infertility treatments really don't have access to care? I know we see a lot of patients each year, but what percentage of people are we seeing that actually need this care? Right.

Well, it's estimated that only one in four people get the treatment that they need to overcome infertility. So that leaves about 75% able to access the care they need. And certain communities are impacted more than others.

Studies suggest that Black women may be twice as likely as white women to have fertility problems, but are far less likely to seek or receive infertility treatment. And I already mentioned the challenges faced by the LGBTQ plus community and unpartnered individuals. So we work very hard to try to improve access to care for all people who want to build a family.

So what resources are available? So if I have infertility, can't afford it, which happens quite often, are there resources for people to look into? Are there medical financing options? I know our clinic will do kind of an access program. If you make less than $50,000 a year, you get 25% off. So it's kind of on the clinic shoulders, but are there other resources available for patients? Yes.

And actually Resolve has compiled a list of financial resources for family building on our website at resolve.org. This includes more than 20 financing programs for reproductive medical treatment and medications, as well as nonprofit organizations that offer grants and scholarships. And as you just said, patients should also talk with their clinics about any financing programs or discounts they offer. Resolve also has a program to help employees reach out to their employers about adding fertility benefits.

Employers often don't realize there's a gap in their insurance coverage until an employee tells them. So Resolve's coverage at work program includes free toolkits for employees and employers with all the resources they need to make the case for adding family building benefits. And we have seen time and time again, how one person making the ask makes a difference.

So if your employer doesn't provide fertility benefits, you can ask them to add this pro-family coverage. Yeah, I 100% agree. You got to start somewhere and it takes that one person.

And like we were talking about before, sometimes you have to be at the right place at the right time. But I've seen situations where the employers will say, well, how can we get more women in this field? And I had a patient that said, well, you could offer some fertility benefits. And even though it wasn't carte blanche, like $25,000 a year, the company said, we'll give $5,000 for medical treatments and $5,000 for medication.

And so it was a stepping stone. And it was all because she just answered that question honestly. So she did make a difference.

That's wonderful to hear. And yes, it is a very highly valued benefit. So I think employers are realizing that it's important to meet the needs of their employees.

Yeah, I've been really happy to see, especially the tech world and bigger companies now, because I feel the employers are driving the increased access to care more than legislation, even though we're making great progress. But I've been really, really pleased to see that. And then also, there's these third-party insurance companies that are coming out too, that it's an option for employers that can go to employers and say, do you want to have a tier for infertility? And I guess, what would you suggest that people do to try and improve their future access to care for fertility treatments? Well, in addition to reaching out to their employers, we encourage everyone to get involved with advocacy at the state and federal level.

Resolve partners with ASRM on an annual federal advocacy day that's virtual, so it's easy to attend. Next year's event will be on May 14, 2024. And one of the main issues we advocate for is coverage at work for all Americans.

It shouldn't matter what state you live in or who your employer is. Everyone deserves access to the care they need to build their families. And federal advocacy day is an opportunity to let your members of Congress know that you care about this issue.

Obviously, it won't happen overnight, but we won't stop until there is coverage for all. And we are having some success at the state level passing insurance mandates and want to encourage everyone to get to know their state lawmakers. Anyone can schedule a call or meeting with their state legislators and share issues that are important to them.

You are their constituent and they work for you. And by having these conversations now and sharing your family building stories, you're creating a relationship and letting them know that you care about family building. So, if the bill is introduced that helps or hurts the family building community, it's much easier for you to reach out to your state lawmaker, remind them about your previous meeting, and state your position on the pending legislation.

And Resolve has a state advocacy toolkit you can download again at resolve.org to help you have these conversations and share your family building story. Yeah, these stories, they really are emotional and just so sensitive. And it's hard not to feel for people.

I've seen health and welfare committee reports and people go up and talk about their struggles. And you really do feel for people. It's certainly personal and very emotional.

It's true. And, you know, people may be intimidated at the thought of advocacy, but you're an expert on your family building journey. And so, that's what you need to share.

You already know it, you've lived it. And that's the most powerful tool you have is sharing your story. Right.

And everyone does have a fundamental right to reproduce. Very true. Yes.

How many states are mandated states that have laws that mandate at least some medical fertility care? So, there are currently 21 states plus the District of Columbia that have some sort of fertility insurance law. 15 of those laws include IVF coverage. But it's important to point out that even when there is a state mandate, not everyone is covered.

For example, self-insured employers are exempt from state laws. So, self-insured employers are typically organizations with more than 500 employees, and they're governed by federal law, which is why we need federal insurance legislation passed as well. But these self-insured employers can voluntarily add fertility benefits, just like we were discussing.

And we are seeing more of them doing that because it is a highly valued benefit that helps them recruit and retain top talent. And we've got lots of data showing that in our coverage at work toolkits that I mentioned before. And in fact, more than 3 million employees have new or improved family building benefits after a coverage at work ask was made.

So, we're really seeing the results. Oh, that's wonderful. 3 million.

I mean, that's 10% of the U.S. population. That's marked progress. Great.

And then what do you think the future trends are regarding fertility benefits? I feel like I have some positive movement in the past five years. Yeah, great question. I think we're going to continue seeing employers adding fertility benefits, both small and large employers, because it's good for their employees and it's good for business.

Even the federal government is expanding their fertility benefits. And as the largest employer in the country, that will impact other employers. I think benefits will continue to become more inclusive, especially with ASRM's updated definition of infertility that is inclusive of same-sex couples and single people.

And I think fertility preservation coverage is likely to increase as a result of people starting families later because they are focused on their careers or because they need to save money before starting a family. And it's important for employers to retain these loyal employees. So all in all, I think we'll see fertility benefits becoming more mainstream and viewed as an essential part of a comprehensive benefits program that supports all aspects of an employee's health and well-being.

Most employers want to be viewed as family-friendly, and you really can't get any more family-friendly than helping your employees build their families. That's so true. If you're working for a small company or you are self-insured, and you may have mentioned this before, but so what would you do to try and get your own coverage for fertility? You would reach out to Human Resources, to HR.

And before doing that, go to the Resolve website and download our free toolkits. There's one for employees that has a template email you can use and tailor. And then there's also a toolkit that you can download to share with your employer that has all sorts of stats and studies showing that adding this type of coverage does not significantly increase costs and that there are a lot of obvious benefits in terms of diversity, equity, and inclusion, and attracting and retaining employees.

So it really is a win-win. And as I said before, often employers don't realize that there's a gap in their coverage until someone points it out. Right.

Yeah, it really is a win-win. And then with infertility affecting 15% of people, it seems like there's going to be an employer or a legislator, either they have it or their family members or someone they know. So I feel like it is, it's a very relevant discussion to have 15% of the population have this.

Exactly. Exactly. I mean, that's more than breast cancer even.

And obviously there's coverage for that. And I think people are surprised that something impacting so many people isn't covered by insurance. So the more we talk about it, you know, the less there is and the more likely that access will improve.

Yeah. And you're going to attract really more competitive employees if you have these options. That's very true.

We know that people will leave for family building benefits. And we know that employees that have IVF insurance, for example, are very loyal and return to the company even after having a baby because they're so grateful. They actually miss less time from work during treatment when they have insurance.

So there really are lots of benefits and, you know, some of them surprising and counterintuitive. So it's important to bring this up with employers. Yeah, this is the only type of insurance where I have seen someone change jobs for this.

I've never seen anyone else change a job, you know, for insurance benefits. It's quite striking. Yes.

Yes. We are hearing a lot of that. So obviously it's important for employers to stay competitive in order to retain their top talent.

Yeah. And people are very appreciative of these benefits. They know it's a benefit.

It's not always a given. And so people are very appreciative. Like you said, they will be loyal.

Yes. I think you did touch on this, but just how to get people involved to help advocate for increased fertility health benefit coverage. Honestly, the best way to get involved is to join the Resolve Advocacy Network at Resolve.org. When you do this, you'll be the first to receive action alerts about legislation in your state or at the federal level.

More than 19,000 people have joined our Advocacy Network and our voices are louder when we come together. So it's important to add your voice and that's patients and professionals. And whether you're still on your family building journey or Resolve or know someone impacted by infertility.

So you just need to go to the Resolve.org website and look for the tab, become an advocate, and we'd love to hear from you and add your voices to the cause. Perfect. And we still have plenty of time for that May 14th advocacy day.

Yes. Yes. So registration will be opening soon.

So we'd love to have everyone join us virtually. And I believe Dr. Slater, you've joined in the past. So seeing you again.

Every year it just gets better. So it's just something you feel good about. So it's a worthwhile cause.

Well, I just thank you so much for this valuable discussion and I'm hopeful in the future for progress like we've had and very appreciative for people like you that are the pioneers in this. Oh, well, thank you so much. Appreciate all you do.

Okay. Thank you.