And so a lot of persons may be insured or uninsured or self-paying for their health care, but not realizing that even with a great health care plan when it comes to fertility either evaluation treatment even to establish the diagnosis, they may not be covered under their health insurance plan.
Intro
Whoever thought making a baby could be so hard? Luckily, the fertility journey isn’t meant to be traveled alone. Eloise Drane has helped hundreds of people build and grow their families over the last 15 years and she’s ready to share insider knowledge and expertise with you. So grab a seat and let’s talk fertility and alternative family building in the fertility cafe.
Eloise Drane
Hello, and thank you for joining me on Fertility Café. I’m your host Eloise Drane. Today I have the pleasure of speaking with Dr. Tia Jackson Bay to discuss disparities in fertility care in minority populations. There are particular barriers to caring for and noticeably poor treatment outcomes for black and brown women. We’re highlighting health disparities that prevent family building through fertility, diagnostics, gynecological surgery, fertility preservation, egg, sperm, and embryo freezing, and infertility treatments like Intrauterine Insemination (IUI) and In Vitro Fertilization (IVF) for minorities.
We’ll be discussing the importance of reproductive justice and increasing access to fertility care for all. Dr. Tia Jackson-Bey is a reproductive endocrinologist and infertility specialist and board-certified obstetrician-gynecologist who cares for patients at RMA of New York’s Brooklyn office. Her professional interests include physician-patient education, IVF outcome improvement, global public health, and mentoring unrepresented college and medical students on careers in medicine. Dr. Jackson Bay is passionate about reproductive justice and increasing access to fertility care for all. She was recently appointed a member of the newly formed ASRM Diversity, Equity, and Inclusion task force which will enhance opportunities and reproductive medicine for underrepresented minority populations and reduce health disparities in access to care. She is a talented surgeon and dedicated fertility expert who was focused on fertility preservation, IVF success, and great outcomes for her patients. Welcome Tia, thank you for joining me. Although I shared a bit about your bio, I’d like to start off by having my guests share a bit about themselves. So if you don’t mind, yeah, share a bit about you.
Tia Jackson-Bey
Awesome. Well, thank you so much for having me. My name is Dr. Tia Jackson-Bey. I’m a reproductive endocrinologist and infertility specialist based in New York. And so as part of my job, I am trained to take care of women as a gynecologist and obstetrician, but then went on to do further sub-specialization particularly in disorders that relate to fertility. So the majority of the patients that we see are coming to us because they are not experienced with pregnancy in the timeframe that they ought to. So they could be infertile or just have questions about their fertility or have chronic conditions that may affect their fertility things like uterine fibroids or endometriosis, or been told by a doctor before that this is something they need to kind of be cognizant of. So we may see them for those reasons as well.
Eloise Drane
Okay, so, I know, obviously the topic of this conversation for today is about health care disparities. Tell us about the barriers to fertility treatment in underserved low income minority LGBTQ communities, like what stands out to you as being the most important that we need to focus on to make change accessible?
Tia Jackson-Bey
Yeah, one of the biggest, I think initial barriers is cost. But to take one step before that, I think it actually is knowledge. We encounter a lot of persons who don’t realize that there’s an issue for not achieving a pregnancy and 1,2,3,5,10 years. They may kind of have a suspicion or maybe they blame it on other things, maybe they don’t know the right persons to seek they may have also been told by their doctors in ever that they should just keep trying and so, that can be a huge deterrent and in terms of the making it to our door in terms of fertility specialists. So just knowledge of the body, knowledge of the menstrual cycle for menstruating persons.
Understanding what it takes to achieve a pregnancy and therefore, sometimes that can help you to know how to optimize your natural fertility or when things are going wrong and you may need to seek assistance, it could be a big part of it. In terms of cost being a barrier, infertility is one of the very few diagnoses that is not universally covered by health insurance. And so a lot of persons may be insured or uninsured or self paying for their health care, but not realizing that even with a great health care plan, when it comes to fertility, either evaluation, treatment, even to establish the diagnosis, they may not be covered under their health insurance plan. And so in some ways, that’s very cool, and that they have this medical condition, their organs are not functioning the way that they should. And for whatever reason, they can’t seek the treatments, or even sometimes the evaluation to deal with that diagnosis.
Eloise Drane
And going back to a point that you made about education, I think one of the things that we as a society need to do better at is even educating our children from young because that is, quite frankly, where it needs to begin, is it’s not by the time you get into your 30s, and your 40s. And now you’re thinking about having children, it really is about having these discussions, once you become a teenager, and as a woman, you start getting your period. And not just women, this can’t just be a woman thing, right? This needs to be an every person, thing, man, woman, whatever. But, I mean, how do we even get there? Like, how do we and I know, obviously, you’re not going to have the answer to all these questions. But I think that having an opportunity to begin having these dialogues with individuals even with your own journey, in your own education in deciding that you wanted to become an RE, how do we try to help educate our young children so that they are aware of like, what things do we need to even consider, like, what should I wish I be telling my daughter or my son as their peers?
Tia Jackson-Bey
This is something that we’ve been discussing so much in recent years, in terms of why is this part of sexual education left out? I think the focus of a lot of kind of school curricula based sexual education is on pregnancy prevention. And in some places, still very abstinence heavy, without just a full appreciation of one day, you’re gonna want to have a family, and this is how you do it. This is the right time for a course in order to conceive this is the right length of trying before seeking new treatment, or seeking an evaluation, or these are the kinds of things that could go wrong. The part that’s left out is about sexually transmitted infections as a young person can predispose you to infertility later on, particularly, gonorrhea, chlamydia. And so it can be wound into the current curricula, I think there’s just not enough of a focus on it as is.
There are some great activists in the infertility space, who also advocate for telling the younger persons in their family about their own infertility struggles, so that it doesn’t come up as such a surprise 20-30 years from now. And I think that that’s incredibly remarkable, too, because there’s something to be said for secrets and privacy, even within a family, to the point that other members of the family don’t know what you’re going through. Siblings not knowing Oh, are they struggling? I don’t know, I don’t ask women or persons not knowing what their parents had to go to, in order to achieve pregnancy. Was there a history there that we should know about? And so those just, I think, in open discussions with their family members is really important. My mom was very open with me about her reproductive history from early on, and maybe I just kind of tuned into it, because I always had an interest in the health field. But I think even something like that is helpful, just to let what the possibilities are, and that it may not go as smooth as you imagined. And so these are some things to kind of ask of your physician, your healthcare team, or just to be aware of for yourself.
So I think definitely speaking to persons who are close to you, if you’re involved in any kind of community service or mentoring, have sexual health day the same way that we want to teach particularly young mistreating persons about their menses and what does it mean, take it the next step further, and let them know that this is what this means in the grand scheme of things and one day you may want children and this is when one way to pursue that. Another thing that’s important is for young queer persons and trans persons to that someone is also talking to them about family building options for them as young people because they may need assistance, or they may even need fertility preservation, if they’re considering transitioning. And just to make sure that they’re aware of all of the options things you want, as a young person can be very different from what you want in your 30s or 40s. And so someone should be planting the seeds to let them know what’s available.
Eloise Drane
Well, that and I also think that we need to begin also having discussions and letting people know that they need to become their own advocates. And they need to be questioning everybody, physicians, and whoever they have in their space that is giving them information or perhaps not giving them enough information, and deciding like, Okay, I need to, I have to become an advocate for myself, because down the line, I’m the one who’s gonna have to deal with all the issues. So what do you tell somebody that as a physician about advocating for themselves when they’re in front of their own physicians?
Tia Jackson-Bey
Yes, this is so important. And I think that it’s important that persons know one, that they have the right to health. I think sometimes in our country, you can make it seem like health care is a luxury, but it is a human right. And so just to understand that, yes, it does not matter your education, your income, your legal status in this country, your marital status, your sexual orientation, your religious affiliation, you do have the right to be evaluated by a healthcare provider to have your questions answered and heard. Those opportunities may be different based on where you live, and that’s a very real thing. But I do want persons to feel empowered in that way is that this is something that you should expect, not feel like is outside of your reach. In terms of advocating for yourself, I think there are a few different things that come to mind sometimes it may be helpful to bring someone to visit with you, either for comfort, or for reassurance, or they may just hear things differently than you do, they may remember different parts of the appointment different. Now, of course, this person may be privy to your health information. And so you have to make sure that someone who you’re comfortable disclosing all of your health data in front of, but it’s a partner or friend, I’ve had patients bring parents, or adult children, just someone else, I think a buddy system sometimes can just be very reassuring in an encounter that can be somewhat intimidating. I think maybe having some questions available in advance is helpful.
So that even after the doctor kind of does their spiel or nurses or whatever, so that you can kind of have a reminder, and maybe not be afraid to speak up and say, okay this is why I’m coming here. This is something I don’t understand. Can you repeat that? Or can you help me understand how we’re going to get from A to B? What is the timeline like? What is the commitment involved? Does my partner have to be involved or not? And so these are kind of important things to just remember. And the questions can be pretty much anything you want. But whatever it is, that’s important to you, it may be worthwhile to write them down in advance of your visit. You can ask certain things before you arrive in terms of health insurance questions, whether or not your insurance is accepted, what happens if it’s denied, what is the cost out of pocket, a lot of times, they may get in contact with that information as well.
But sometimes I hate when patients have like sticker shock, from arrive into a visit, because they didn’t know that maybe some aspects of it wasn’t going to be covered, they may get all the way there and have traveled there, and then they want to leave because of that. And so sometimes it might be helpful to do a little bit of that research before the first visit. And then other things, I think which can be hard for different groups, and I definitely appreciate that is just to make your intentions known. If this is something that you’re very committed to, if you’re not feeling heard, if you’re not feeling respected, in some cases, instead of just change the course and never coming back to the practice, it might be helpful to give that feedback. Physicians are humans too. They’re not perfect. I think a lot of times it can be a lot of medical jargon that’s used.
There can be unconscious bias which all humans have, but which is actually very pervasive in medicine and can affect your care and your outcomes in your treatment. And so sometimes just by addressing it in a way that’s comfortable for you just can bring it into the consciousness of the healthcare team, and maybe they can make some changes from there that may, it may very well be that you choose to continue your care somewhere else, that’s a possibility for you. But I think in this struggle to really become a better healthcare system, we have to have that feedback. And I would really encourage any person to make sure that you provide that, if that’s your experience.
Eloise Drane
Well, that and so touch base back onto this health disparities specifically want to touch on the black and brown community. And I know that over the years, I have heard numerous times about families or individuals that have gone into the doctor’s and they’ve been complaining about certain things, and the doctors are completely dismissive to what their issues are, or their concerns are. Why do you feel there’s such a healthcare disparity besides cost? Why do you feel that there’s such a healthcare disparity in the black and brown community right now? Because I mean, we are way more educated than our parents were and our grandparents were, but yet, and still, we’re still dealing with the same, maybe not the same, but we’re definitely still dealing with a lot of the issues that they dealt with when they were trying to have children. Why do you still think that it’s still prevalent?
Tia Jackson-Bey
Yeah, it’s definitely a multifaceted issue. And I don’t like to really categorize so much. There are some things that kind of stand out to me. I think one of the biggest, and we talked a lot about knowledge is not necessarily a knowledge base, but like an understanding of what is to be expected, what is possible, what is kind of a normal length of time to try before seeking treatment. One of the statistics that really stands out is a lot of times black couples present to infertility care with a longer duration of infertility at first consult. So that means that for a couple that maybe was trying to year, the black couple has typically been trying for twice as long. And so they may have been trying for two years before they seek treatment. And the reasons can be varied, maybe they expressed concern to physicians, and we’re told that they should just keep trying.
And so referral patterns to subspecialist has been something that’s been shown to be different for different races, whether there are assumptions on the physicians, behalf of affordability, or to this day, there are certain groups, including us that don’t realize that infertility affects brown and black couples. And so that’s also kind of a big issue in itself is this idea of, that’s not an issue for these people, or if it is, well, they can’t afford the treatment anyway, so I’m not going to send them. So those are some of the biggest things in terms of like referral, but then also just an understanding of what’s normal. I do have a lot of interactions with patients, or even just people who we meet along the way, who say, well, I was trying, and I’m just really kind of leaning on the Lord. And I call this the praying for me. You can continue to pray but I definitely want you to come in and be seen also wants you to pray for the right doctor who’s going to listen to you, and who’s going to address your needs.
And so, I think sometimes, either fear of what they’ll be told when they come to the doctor, stigma of even from their partner from within their family, within their social network for maybe having issues conceiving a lack of understanding, because no one else is talking about it. And so feeling like, am I the only one? Why did this happen to me everyone else has children with no issue, or even sometimes I had my first child with no issues. I don’t understand why it’s so difficult now. But all of those things should be reasons why you’re seeking treatment, or at least seeking an evaluation to figure out what’s going on. So there’s some kind of understanding costs certainly plays a huge role. As I mentioned, with infertility diagnoses not often being covered by health insurance. Right now, there’s only 19 states out of the 50 US states that have some sort of legislative mandate to say that infertility treatment should be covered by health plans in that state.
But even within those mandates, there are huge gaping loopholes, including sometimes the evaluation is covered but not the treatment. Sometimes one type of treatment is covered but not one of the most efficacious treatments we have available, which is in vitro fertilization. Only about five or six states include specifically In Vitro Fertilization as part of that insurance mandate. And so you can imagine that leaves a lot of persons without insurance coverage for infertility treatment. We know what that does is it creates a huge chasm in terms of who can get treatment and who can’t, because the infertility treatments can be very expensive out of pocket, something like in vitro fertilization can run 10s of 1000s of dollars for one try.
And we know that sometimes to be successful, you may have to try more than once, just the evaluation and of itself that may require out of pocket payments, or multiple physicians visits, which can be disruptive to some person’s work schedule, or distance traveled in order to get to the clinic. The clinics at this time, tend to be located where patients can pay in cash, right, so they’re located in cities, they’re located on the coasts, there’s not a lot of rural representation, Midwestern huge swaths of the country and populations are not adequately served or have to drive maybe more than 100 miles to seek care at a fertility clinic. And so these are some really significant barriers to care overall, not having that insurance coverage and then also having clinics situated in communities that are more affluent, tend to be more white tend to be more urban. That certainly plays a big role as well.
Eloise Drane
And I know we keep talking about health disparities, obviously, in the US here, where clearly we’re here. But you’ve traveled to Honduras, South Africa, Ghana, Tanzania for various projects and women’s reproductive health. What did you learn in your travels about universal disparities in women’s health care, specifically, reproductive care?
Tia Jackson-Bey
Yeah. I mean, there’s so much to learn from all different areas. I think something’s it makes you reflect on some things that the US does well, and then something that the US does not do very well taking care of a woman through pregnancy, early postpartum period, we’re not so good at that, actually. Despite really high amount of money spent per person on health care dollars that actual social support you see in the news recently were really looking for a national kind of family medical leave and see how hotly debated that is. That’s just that’s basic care for family. Women and children, yourself as a mom like to go back to work in less than a month, because you don’t have enough leave, or you feel like your job may be lost. It’s just, it’s incredibly heartbreaking.
Eloise Drane
Yeah, and some places you can’t even bring your child to the daycare because they don’t even accept the child before six weeks old.
Tia Jackson-Bey
Yeah. I mean, it’s something that kind of really stands out to me. But, in terms of what I see in other places it runs the gamut. I think, overall, we still have to really work hard to have women’s health valued at the same as everyone else, right. So this particular concerns of women in other places may not be as highly regarded. But there is some hope there. I think fertility concerns bring about a whole nother dynamic in the sense that fertility is often blamed on women. Without a real understanding that, yes, it takes to there’s equal contribution from male factors and female factors for infertility, but because women carry pregnancies, the lack of a pregnancy is often blamed on women and so that can have really significant social, cultural, and actually safety implications on women around the world if they’re unable to conceive or to have successful pregnancies. They can be abused, they can be shunned, they can be in some sense kind of abandoned by families and it’s like a divorce but left without anything and that it just has tremendous health, mental health, safety, economic implications. And so, improving the understanding that yes, this is not just a woman’s issue. This is a male and female issue and a lot of times it actually can be both is important to really kind of get the word out there worldwide.
Eloise Drane
And reaching into your experience. As a gynecologist, and especially right now with women and dealing with the maternal, the high maternal, fetal deaths that we’re having now in the US, I mean, why do you think that is? It’s not all of a sudden, clearly, it’s definitely going up instead of down. Why do you think that? Especially, I mean, look at this country, right, in all of the capabilities and the possibilities that we have, like we’re going the wrong direction?
Tia Jackson-Bey
Well, I think it’s a few different factors in terms of why infertility rates are increasing that much maternal fetal deaths, oh, maternal mortality. Yes. So, there are still some pervasive issues. One of the most important is the role of systemic racism. And what we call unconscious bias. Unconscious bias means that, you may form opinions, you may act differently, you may think differently about different groups. And it may or may not be something that you actually recognize. We’ve probably all been socialized and trained to think, okay, to recognize patterns, you see brown skin, this is what this means. You see dark skin, this is what this means. But unfortunately, if that’s something that we’re realizing is ingrained in medicine, and is actually held by medical providers, that can mean very serious consequences. And so that plays a big role in terms of who is recognized as actually having a medical emergency during pregnancy or in a postpartum period.
If you think that they’re drug seeking, which is something that you typically hear of African American persons, if you think that they’re being dramatic, or histrionic instead of really listening to their concerns, which it sometimes is, is explained of LatinX women. These are really important things that you have to kind of nip in the bud because it can mean life or death for some people. There have been studies that have shown that racial concordance between physicians and patients actually makes a difference. And this is something that’s been very hard to get the medical community to understand. But whether it means that the patients feel more comfortable, and they disclose more, and they are more in tune and therefore not shying away because they feel more comfortable with a provider that looks like them. Or if it’s just the provider take an extra step to listen, do they speak the language? Do they come from a similar community? Do they understand some of the social constraints on health that may be a provider who’s not in that community doesn’t understand.
And so these are things that can make a huge impact. And unfortunately, we aren’t in there at that point yet. And, they may play a role in increase maternal mortality. There are other factors too, they’re always going to be health, absolute health factors as a population, we’re all having children later in life. And so that kind of skews things a little bit in terms of maybe having pregnancies and starting pregnancies with different kinds of chronic illness than we ever have before. But, I think we really have to lean into what are the structural issues that are being recognized? Are we recognizing hemorrhage early enough? Are we recognizing disorders of hypertension and pregnancy soon enough to act? And are we treating patients appropriately? And, I hope in the time since these, the CDC reported this increase in maternal mortality specifically for minorities, that a lot of these changes have been made, not just at the big academic hospitals, but even smaller hospitals who have less deliveries in it even like birthing centers.
Eloise Drane
And I know one of the concerns right now to read, obviously, is getting the COVID vaccine. And, there’s definitely people on both sides and of it’s going to affect their fertility if they get the vaccine, and even my own family members are just like, No, no, because if I get the vaccine, then it’s going to affect my fertility, and I’m not going to be able to have children anymore. And this is exactly what the government wants because they’re trying to create another Tuskegee experiment. So yeah, I’ve recently heard that one too.
Tia Jackson-Bey
It’s really hard, I think, I definitely understand both sides. As a physician, I’ve seen the devastation of COVID. To see to even just think about the sheer number of persons that have lost their life to it. But even more persons who have been infected and have had these long ICU stays who are now experiencing this long COVID syndrome with neurologic impairment, respiratory impairment that we have no idea how this is going to look 5,10 years from now. And so there’s this urgency to one get the virus contained, but then two, protect us in the vaccines that are available are highly effective in preventing severe illness and death. They do not take away the chance that you may get COVID. But, to prevent severe illness, that you don’t have to be hospitalized, you don’t have to be intubated, you don’t have to run your organs to the brink of failure. Or even unfortunately, sustained death is a significant finding, and I think that’s worth it, but vaccine hesitancy is a big issue. And I think this has really kind of cracked open this Pandora’s box that we won’t be able to close, and that there is a lot of mistrust of the healthcare system.
Unfortunately, due to our past history in this country, due to a lot of inaccurate information that we saw over the last four to five years, with social media and just inaccuracies on social media and how quickly it can spread. It’s hard to know who to believe. And it’s hard to know, to trust. And so I do sympathize with that. But one thing is that, I think we’ve tried as physicians to get as much good information out there as possible terms of the benefits, the so called benefits of COVID vaccination. It does not affect your fertility, this has been proven in multiple studies to date, we don’t know how it will affect you for the rest of your life. But we do have short term data that says that it’s safe, it’s effective, and there are no long standing, detrimental outcomes that would outweigh the benefits of potentially taking it now and avoiding the consequences of severe COVID, infection or death. So, we’re at this point, now, it’s a little bit of a tipping point, because we want to, we want to just do what’s right. And at this point in the game, vaccination is the way forward. So, I really encourage anyone who’s still on the fence or has questions to just try to engage either health professionals and try to stay off of social media.
Eloise Drane
or Dr. Google, yes.
Tia Jackson-Bey
But just try to go to sources that you trust. The CDC actually has a very nice layout of the vaccinations, of the studies that are available, kind of very plain data on what the COVID pandemic has looked like so far. And that’s something that’s available to the public. Asking your physicians, ask your pharmacist because the pharmacists are given the vaccinations now as well, and maybe started there.
Eloise Drane
What about for women who are already pregnant and are considering getting vaccinated?
Tia Jackson-Bey
The recommendation now is to continue vaccination in pregnancy, so if you are completely unvaccinated, we would highly recommend COVID vaccination in pregnancy. We know that it is safe, it does not have detrimental impacts on the pregnancy, you can have the same side effects as someone who’s not pregnant sore arm, you can have headaches, a day or so of fevers or something like that. But they’re very self limited. And overall, it’s been very well tolerated. The vaccine has been for pregnant women the recommendation is to go ahead and get it. It’s also for it’s your first shot or second shot or single dose, but now also for the boosters.
The American College of Obstetrics and Obstetricians and Gynecologists, as well as multiple different organizations, including the CDC Center for Disease Control, are recommending that pregnant women get boosted as quickly as possible. What we found is that COVID can be particularly devastating in pregnant women and I think it even hit worse during this delta wave of particularly of unvaccinated persons and vaccinated pregnant persons. So, COVID vaccination during pregnancy increases the risk of hospitalization, increases the risk of intubation, increases the risk of needing to deliver therefore, sometimes there can be preterm delivery because the delivery may be needed to help with the resuscitation of the mother. And then also it does increase the risk of COVID-related death during pregnancy. And so by being vaccinated, you’re not just saving yourself but potentially saving your unborn child from infection or any negative sequelae. So it’s important we understand that people are nervous, but all the data that has come back so far is good. And so I want you to hear clearly that it is highly recommended to get the COVID vaccination or your booster during pregnancy.
Eloise Drane
Well, any last words of wisdom you’d like to share?
Tia Jackson-Bey
The most important thing to me is if someone has questions about their fertility status, about trying to create a family, about starting a family, even on their own, that they look for the doctors, look for the providers that can help you to reach your goals. Sometimes I have patients who said it took me a long time to make this appointment. And I’m always like, I’m just glad to hear now we can figure things out and hopefully move forward. And so that’s really important overall. So my request is always that you just don’t delay and in infertility, we’re all time is actually very important. And so the sooner that we can see you and get an evaluation potentially start treatment. If treatment is needed, then the sooner we can get you on a road to build in your family.
Eloise Drane
Awesome. Well, thank you so much. And it is been a pleasure speaking with you. I’m certain that our listeners will have learned a great deal and will definitely be sure to add your information into our show notes. So thank you for your time. I really appreciate it.
Tia Jackson-Bey
No problem. Thank you.
Eloise Drane
I hope you found this discussion helpful as you weigh your next steps. We will love for you to rate us. So if you haven’t yet, go to your listening platform of choice, and subscribe, rate, and review this podcast. You can follow Fertility Café on its Instagram and Facebook channel at Family Inceptions. We’d also love you to share Fertility Café with friends and family members who would benefit from the information shared. Join us next week for another conversation on modern family building. Thank you so much for joining me today. Remember, love has no limits, neither should parenthood.
Outro
Thank you for joining us in the fertility cafe. Whether you’re an intended parent, a woman considering egg donation, thinking of becoming a surrogate yourself, or a friend or family member of someone dealing with infertility, we’re here to help. Visit our website thefertilitycafe.com for resources on fertility, alternative family building, and making this journey your own.
Listen to this episode here.
