SART Fertility Experts - Access To Care

Many factors impact access to infertility care. Learn how a variety of factors such as geography, race, and the availability of comprehensive infertility mandates affect access to effective infertility treatment.

Hello and welcome to this episode of SART Fertility Experts. I'd like to introduce my guest today, Dr. Tarun Jain, Professor of Obstetrics and Gynecology at Northwestern University School of Medicine and Chair of the SART Practice Committee. Dr. Jain is a reproductive endocrinologist who has an interest in access to care and has published many articles about diversity, equity, and inclusion in infertility care.

Thank you so much for joining me today, Dr. Jain. Thank you for having me. It's a pleasure.

Dr. Jain, you have specifically written about access to care in in vitro fertilization. I was wondering if you could tell us about what the SART course data tells us about utilization of IVF in the U.S. with regard to different ethnic groups? Absolutely. So just to begin with, fertility is very common and affects so many people.

And it's really, infertility is such a challenging situation and medical condition that's really classified as a disease and everyone should have a right to have effective care and treatment for it. The problem is that fertility treatment, specifically IVF, is quite expensive. It can range, just one IVF cycle can range from $15,000 to $25,000, which can become quite cost prohibitive.

And that often leads to many people not being able to access such effective treatment when they truly do need it. And that leads to various utilization patterns that exist in accessing and using such services, which should be readily available to everybody. In the United States specifically, there are a few states that have actually passed laws requiring insurance companies to cover this effective treatment, because unfortunately, many insurance companies declined coverage for it, which is not a good thing, obviously.

But to bypass this, many people have advocated in their states for legislation, and there's been successful legislation passed in presently about 20 states. However, out of those about 11 currently have really good laws requiring employers to provide coverage. And so in some of our work and other people's work, we've found that when such coverage, such mandates exist, many more people, almost three times as many people are able to access and use effective treatment like IVF in those mandated states.

That's a really good point that you make, that mandates help improve access to care. But even in states with mandates, you pointed out that not everybody takes advantage of the benefits. Why is that? Yes, that's exactly right.

Even with that higher utilization, there's differential access happening. And that often is along race and socioeconomic status. And what our data has found is that even in such states, the predominant population accessing tends to be Caucasian, highly educated and highly wealthy, essentially of a very high socioeconomic status.

And we've done some work to try to better understand that. And it's really a multifactorial answer. There are a host of reasons ranging from one of the aspects we think are different belief systems and fears and mistrust that exist in different populations in seeking health care in general, and particularly fertility care, where it can be quite daunting and scary for many people in different cultural backgrounds.

That's one of the factors there. There's also provider-related factors where there isn't as diverse a group of providers. It can sometimes be a hindrance.

Or even a schedule that allows for fertility treatment, being able to come for frequent doctor's appointments early in the morning and having transportation and living close to a facility. Absolutely. The geography is so important.

Where you live, how close are these providers to where you live, to where you work? How easy is it for you to get time off to come see providers? Because these treatments, as we know, can take time. You need several appointments. You often have to come frequently for ultrasounds or blood testing.

And those in itself can be significant barriers. And another thing is also we found that people who are African American and Hispanic tend to delay seeking care by almost a year or longer for various reasons, including perhaps the referral patterns aren't quite the same. Some patients are more likely to be referred sooner than others.

So that's another factor that is, I think, creating a barrier. I want to go back to something you said about infertility being an illness. I had a patient once come to me with FMLA forms for fertility treatment.

And I filled them out for her, and her employer said they don't consider infertility an illness, and they wouldn't grant her time off for fertility treatment. Just as an example of some of the barriers that patients with infertility face. Absolutely.

I think that's so challenging because there's variability in the providers who are frontline giving these patients information or disinformation on how to get to us. And so in some ways, we need to have greater direct patient education that, hey, if you're dealing with these issues, there's actually great care, and these are the right people to come to sooner than later. It also sounds like we need more institutional or legal support for our patients to get care and that society needs to recognize infertility and the difficulty that it causes, as opposed to making it more of a lifestyle issue.

Yeah, that's totally correct. I think it's all too misunderstood, unless you're dealing with it. I think for people who have never experienced going through it or have never known anyone, which is probably hard to believe at this day and age now because of how common it is, I think one can soon realize how challenging and what a true medical condition it really is.

And it's one of the worst things for anyone to experience. It's almost like similar, the stress and anxiety level is similar to a diagnosis of cancer. And that's how devastating it can be for patients.

Now, one of the other things that your research pointed out that even with access to IVF, black and Hispanic women have lower live birth rates compared to white women. Why do you think that is? Yeah, that's another disappointing finding, I have to say. And it's been found by many investigators, including ourselves, using our national database, using the SART database that exists, that can be freely accessed by anybody.

And I encourage people to go to sart.org to look at this themselves. So the data is collected nationally by all fertility clinics and reported annually. And we look at the details of that.

And we have broken it down by race and ethnicity and looking at the outcomes of IVF. And consistently year after year, we find that the pregnancy and live birth rates from IVF are lower after controlling for all the other confounding factors, whether it be age or BMI, smoking history, etc. Black women, Hispanic women have consistently lower success rates compared to Caucasian women.

So the big question is, why is that? And that's the area where so much more research needs to be done. Because again, I think it's a multifactorial answer. We know that there can certainly be differences in potentially genetic factors that may play a part.

There could be some biological differences. Environmental factors can play a role. Different diet, food, exposures, certainly time to getting to the provider.

The big one, I think, right? So they take much longer to be able to get to care. Yes. And that is really, really tough because we know just from practicing in this field for so long how important age is.

And every year can make a difference. Absolutely. Totally.

And the longer the delay in getting to us, the harder it is, the lower the success rates as well. And the higher the stress. Absolutely.

Something to encourage our listeners, if you're trying to conceive, try your best to, if you are under 35 years of age and you've been trying for a year, try to see an OBGYN and get referred to a fertility specialist. Or if you're over 35 years of age, six months, you should be trying to get an infertility evaluation and referred to an infertility specialist. Absolutely.

I think that, and it's surprising that that information itself is not obvious to many people. Because I mean, I've had patients who've waited like three, four, five, six, seven, eight years even before coming to see us. And it's really frustrating for them to learn that, gosh, I could have gotten here much earlier.

And so I think really being proactive for patients to just be empowered to know that they can take charge of their health and their care and come see us and ask for a referral if they're not getting one. Absolutely agree with you about that. I want to talk a little bit more about the insurance mandates.

There seem to be big differences in how the mandates help patients. Have you noticed some mandates are more extensive than others or more broad than others? And what might a typical patient encounter with an infertility insurance mandate? Yeah, for sure. Not all mandates are the same.

So there's a lot of variability and exceptions to state mandates. One obvious and common one is if the employer has to be headquartered in the state of where the mandate is. So for example, if you're living in Illinois and working for a great company, but they're not headquartered in Illinois, that company does not have to provide fertility benefits.

So that's one exception. Another one is it can vary by the number of employers in that company. So in Illinois, again, for example, the employer has to have at least 25 employees to fall under that mandate.

So if you work for a small business, a small company, less than 25 employees, they don't have to provide those benefits. Or there can be religious exceptions. So if a religious based employer doesn't have to follow that mandate, or if the company is self-insured or unionized, they don't have to.

So it isn't 100% across the board. So I personally experienced this. I practiced in Massachusetts for many years.

One of the employers based insurances that I worked with excluded anybody who used tobacco at all. And so they routinely required cotinine levels on anyone who wanted to undergo treatment. So there were routine screening for cotinine for anyone, regardless of whether or not they had a history of smoking.

Wow. So they were just looking for reasons to exclude patients from treatment. They also had to be attempting to conceive for a certain amount of time before they could access benefits.

They also usually had to complete a certain number of intrauterine inseminations regardless of their age. So sometimes they had to use a less effective infertility treatment, which might not have been appropriate for them, despite what might have been the best treatment for them. So sometimes insurance mandates can be helpful, but sometimes they're not always in the best interest of patients.

That's so true. That's right. And sometimes they require a larger number of years of infertility before coverage begins, as opposed to just one year or six months.

And so that is the frustrating aspect that not all mandates are the same. But I encourage patients to go to a site called Resolve, patient advocacy organization, resolve.org. They have a nice map of the United States there showing the mandates and the details of every mandate. The Resolve toolkit, right, can help those who don't have any coverage at all at least have that conversation with their employer about getting benefits at work.

Yes, absolutely. Because you need to at least be empowered with what coverages you do have. Because something can certainly be better than nothing.

So yeah, absolutely, I think. And now I do have to say that more and more employers are starting to opt in to providing voluntary fertility benefits. Because I think the workforce is seeing, certainly the demographics are changing.

There are a lot more young women in the workforce than ever before, and employers want to retain them. And so they're actively providing fertility benefits. And if they're not, that's another point to look into when you're looking for a job.

Just to look at their health benefits up front and see who's providing fertility benefits. Because that's how companies are going to have to provide it. If people are asking for it, if you don't have it, well, I've got a choice.

I'll choose the employer with the benefits. Because it's well worth it, as we know. Because just a couple of cycles of IVF can break the bank very, very easily.

Absolutely agree with you. And I counsel my patients the same way, to advocate for themselves and to shop around. Yeah.

And some companies are also covering fertility preservation, which is also a nice thing to consider. Certainly if you're not ready to have children in the present time, that's another avenue that many people are now considering, especially as larger companies are certainly providing that added benefit of freezing your eggs to essentially, you're young now, this is the time to do that if you don't plan to start having children until a later point in time. That's a great idea.

Great suggestion. Something that patients can think about while they're young. Freezing their eggs for the future.

I think there's a lot of room to improve. Certainly, I think advocating, if you're in a state that doesn't have a mandate, talking to your local representatives in the state, advocating for it, I think the more, this is how these other states have grown their mandates, through grassroots advocacy. And if you're able to talk to your representative, even send them an email, I think the more emails and stuff they get, they're likely going to act in your interest.

Are there any other things that we can do to improve access to care or anything else that can make accessing fertility treatment easier? I think us, especially as an organization, we have to continue to keep that top of our mind. And our organizations are, literally it's one of the major emphasis now for the American Society for Reproductive Medicine is access to care. How do we expand access? We need to increase the number of providers we train.

We need to be more diverse in those providers. And this is happening. More training programs, hiring more advanced practice providers to shorten the wait times.

Sometimes the wait times can be quite significant in centers. And then also having more satellite offices so people don't have to travel for miles and miles to see someone. Telehealth has become a big push now, which has, I think, been really nice.

My patients really love the telehealth model. They can easily see me even though they're at work. So it avoids them having to take time off work.

I think that's been a significant benefit. And more people are continuing to do that. I agree with you.

Telehealth has been a really wonderful addition to infertility care because so much of what we do is counseling. And it works really well for this group of patients. Yes, we need to see our patients in person for some testing and some treatment, but a lot of what we do is counsel.

And so telehealth is great for that. And of course, the ideal Holy Grail will be a national legislation mandating coverage for all because really that's ultimately what we need. It's a very serious medical condition that really should be covered for everybody.

I absolutely agree with you. Dr. Jain, thank you so much for taking the time to talk with me today. This has been a really wonderful podcast, and I look forward to more excellent publications from you on this topic in the future.

Good luck to you, and thank you. Thanks so much, Kelly. Thank you.

The information and opinions expressed in this podcast do not necessarily reflect those of ASRM and its affiliates. These are provided as a source of general information and are not a substitute for consultation with a physician.