Born too soon; the difference a day makes

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Dr. Joia Adele Crear-Perry of the National Birth Equity Collaborative and Dr. Kelle H. Moley of March of Dimes joins NCL’s Executive Director Sally Greenberg for a dialogue about premature births, maternal outcomes, and the societal stressors that disproportionately affect some pregnant women more than others.

*Due to COVID-19 safety protocols, this episode was recorded remotely. Audio quality has been impacted as a result.*

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Sally: Hello, my name is Sally Greenberg. My guests today are Dr. Joia Adele Crear-Perry. She is founder and president of the National Birth Equity Collaborative and is most well known for her work to remove race as a risk factor for illness like premature birth. She is also the recipient of the Congressional Black Caucus Healthcare Heroes Award.
My second guest is Dr. Kelle H Moley. She is Senior VP and Chief Science Officer at March of Dimes and is responsible for the strategic direction and oversight of March of Dimes research. In 2014, she was elected as a member of the National Academy of Medicine, formerly the Institute of Medicine.
So welcome to my guests. Let’s kick things off by starting with the question of, could you each tell us about your respective organizations, Dr. Joia, you want to start things off?

Dr Joia: Sure. So first of all, thank you so much. This is an honor, and I appreciate you having me on the podcast and having us to talk about our work. So I am an OB GYN by training and the founder and president of the National Birth Equity Collaborative. We’re about five years old and we work to improve outcome for black infant and maternal health. We do that through research. So, we work with organizations like the March of Dimes and others to really look at what are some of the underlying risk factors, not related to one’s genes or choices.
But looking at the social determinants of health and the root causes of those for why we have disparate outcomes based upon race for infinite maternal outcomes. We also do policy and advocacy with our partners. So, at the federal state and local level, helping to generate and work with them to generate policy and rules, some of the harm that’s been caused by past historical policies. And then we also do what we call culture shift, which is things like this, which is podcasts, interviews, media, social media, really changing the narrative of how we think about race in this country and racism of importance of undoing, a belief of a hierarchy of human value based upon skin color. So that is our work.

Sally: Okay. Thank you. Dr. Moley, tell us about your organization March of dimes.

Dr Moley: Yes. Thank you. And I want to thank you too Sally for bringing Joia and I together to do this. And this is a real health crisis in the U.S. right now, as far as pre-term birth and women and children, and the March of Dimes leads the fight for the health of all moms and babies. We believe that every baby deserves the best possible start, but unfortunately, most babies, not all babies get a best possible start. And we’re hoping to change that. And for the last 80 years, March of Dimes has been helping millions of babies survive and thrive. Initially, we began with Franklin Delanor Roosevelt, personal struggle with polio, and he led to the creation of the National Foundation for Infantile Paralysis, better known as March of Dimes. And we were the first to pioneer a vaccine for polio leading to its eradication.
And then we shifted our focus after solving the polio crisis to address some of the bigger health themes and threats to moms and babies with innovations like folic acid and newborn screening and surfactant therapy. And today we educate medical professionals and the public about best practices. We support life-saving research, both translational and basic research, and we provide comfort and support to families with babies in the neonatal intensive care units, as a result of prematurity.
And we advocate for those who need us the most, we are stronger and more committed than ever to guiding moms through every stage of the pregnancy journey. And we are fighting for the smallest among us and advocating for their health each and every day. And we do so with the tools, technologies, and the knowledge needed to build a brighter future for all of us.

Sally: Okay. Well, that’s great. Let’s really break this down for listeners, if the whole issue of prematurity and pre-term birth is not necessarily something people understand, if you haven’t experienced it with members of your family, it’s a very serious topic and the magnitude is really quite enormous, but let’s have a primmer. What does it mean when a baby is born premature?

Dr Joia: Sure, sure. So as an OB GYN, when I was in medical school, I had this happened to me first-hand. My son, I was 22 weeks pregnant and he was born weighing 445 grams. And so, despite being married and planning my pregnancy and being young and healthy and exercising, I still went into pre-term labor and had my son early. And so, when he was born so early, he was born in June and he was not due until October so that he was in the ICU on a ventilator.
He went from one type of ventilator to another several times, even as a medical student, they would call me to come to the NICU to say goodbye to my baby when then he would perk up and he would keep on perking along. But to deal with the moment of what’s happening inside the ICU and still have to go back and take classes and take care of my older, was too much.
I had at the time, a four-year-old and a husband. And so, the dealing with the baby in the ICU and also having to live your life and not knowing what’s going to happen with your baby. And then once he was able to come home, he had multiple appointments, physical therapy, occupational therapy. He had hearing aids. And so even when babies survive prematurity, they’d still have multiple complications.
I am blessed that he was able to walk and eat, finish high school. And now he’s 23 years old and eats us out of all the food, but at the time it was very stressful and it was a lot of resources. One of my jokes it’s a good thing. It’s a great thing. So, for me as an OB GYN, as a person working on this work, it’s both something that I know from a practical matter of having delivered preterm babies, but also as a person who had a preterm birth myself,

Sally: What’s the gestation period that’s ideal?

Dr Joia: Ideal is full term.

Sally: How many weeks?

Dr Joia: Normally we want it to be at least 38, 39 weeks. It would be nice. Full term is 37 weeks. I made it to 22 with my second baby. My first daughter would say 40, she was overdue. She didn’t want to leave me. She still does it.

Sally: I had one of those. Most people don’t understand. I would eventually guess that what the full-term gestation period is. Dr. Moley on the issue of prematurity, what happens at 35 weeks? That’s different than 39 weeks or 32 weeks that’s different than 37 weeks. Give us the basics on this.

Dr Moley: Yes, sure. So as Dr. Joia said, any pre-term birth is really anything before 37 weeks of a 40-week pregnancy and in this country and actually in the world, there are about one in 10 babies born each year prematurely, and that can range anywhere from 22 to 37 weeks. And those are very different types of pre-term birth. We just explained that 72 percent of all pre-term babies are born, what we call late pre-term between 34 and 36 weeks and each year in the U.S. because the late pre-term births are the majority. And also, the majority occur in black, non-Hispanic moms. And it’s 35 percent higher than the rate in white, non-Hispanic moms.
So, it’s definitely the later gestational ages are predominantly African American. And then before 30 weeks, 34 weeks is a very different model of pre-term birth. And, babies that are born at 22 to 30 weeks are of course the most severe, they also occur the least frequently. And then the next highest rate of pre-term birth is between 30 weeks and 34 weeks. So, there’s these three different time points and very different presentations.
Many of those that occur in the late are medically indicated. So, moms with high blood pressure that is really necessitating the delivery of the child probably due to preeclampsia, but some of those people also have pre-existing hypertension. In the ones between 30 and 34 weeks it’s very difficult to know what happened.
In many cases we never know and in Joia’s case that exactly is what happened and that’s really where research needs to be done. And at the March of Dimes, we’re trying to fund research to determine from a biological level what’s happening. In the hopes of finding some prevention, some pharmaceutical prevention or some device that could help prevent preterm birth, everything ranging from contractions of the uterus and the electrical signals to microbiome changes in the vagina. Again, this is an area where we don’t have a lot of information on the root cause of pre-term birth.

Sally: And yet it’s a very expensive problem in the United States. Can you explain what’s preeclampsia and how common is it?

Dr Moley: Preeclampsia is a condition that certain proportion of women develop during pregnancy. Sometimes it can be very early in pregnancy and that’s a bad outcome because the blood pressure keeps going up. We don’t know exactly what causes preeclampsia either, but we think it definitely has something to do with the placenta. And as a result, it’s kind of a you’re in this time crunch between pushing the mom out as far as you can, but hoping she doesn’t have a stroke as far as going to 37 weeks. But in some cases, the blood pressure gets so high and it’s not controlled by medication. You actually have to do a C-section to save the mom and the baby may have to be born early.
And that, again, we don’t know the causes of that. They seem to be very similar to what causes pre-term birth and spontaneous pre-term birth, because they tend to occur more in women of color. And that, again is something that we don’t understand.

Sally: Tell us something about the difference that a day or a week can make in the development of the fetus. And would you talk to us, Dr. Joia about how that works and why one week so very important?

Dr Joia: We tell our patients when they come in and they are contracting that what we want to do is try to get them as far along as we can, because the baby’s organs are forming and maturing inside of them. They are the little incubators and the babies are growing and they’re built to stay inside until we get to full term. And so, each week another organ is formed.
So, I can use my son again, as an example, at 22 weeks, his skin wasn’t fully formed. So, his skin sloughed off a lot. Think about that. When you think about a full-term baby, their skin is really soft and they have vernix on it. But when you’re really, really early, something that you take for granted your skin so although he already had brain and some of the bigger organs, they weren’t fully formed enough to be able to survive without being inside of a uterus.
And so, each day, each week, the last couple of things that we need to be inside of the uterus are your bowels. So, your bowels need to continue to not be used. You don’t want bacteria inside of them until they’re really fully ready to come and take on bacteria. And so, when babies are born too early, they can get injuries to their intestines, to their bowels and also their eyes. There’s a certain level of oxygen that your eyes need and tension around that. And when you’re born really early, you have blindness as your eyes haven’t finished with those things.
And then the last thing is your lungs. And that’s really when we see the late premature babies that Dr. Moley mentioned, they haven’t fully developed their lungs yet. And so, especially when we are thinking about this current crisis, we’re in with COVID-19. Having a baby whose lungs aren’t ready to take on viruses and those are the reasons that we make sure we don’t want babies around a lot of different people because they’re more susceptible to illness. Their lungs haven’t finished developing. So, if you’re born premature, they haven’t developed enough. So, you are really even more susceptible to injury.

Sally: You both talked about some of the problems that are apparent and evident in premature babies. Can you talk a little bit more about what the risks are and some of the ways that we mitigate those risks? I’m sure sciences and medicines are much better at treating the problems with prematurity now.

Dr Joia: Most of the things we’re guessing at right. Because we don’t know. We know as was mentioned that women of color have more the outcomes of premature rate and preeclampsia, but we haven’t figured out the why. We know the countries that have better outcomes have a better social safety net. So, people have things like childcare.
We know it has something to do with stress and something to do with not having social safety nets support. So we do ask people to try to find ways to decrease their stress, to look for ways to make sure they are connected and have a social safety net, but it’s hard when you’re working an hourly wage job and you need to go into the doctor’s appointment, to check on your pregnancy and you miss work and you can’t be paid.
You have to choose between eating and being able to make a doctor’s appointment. So those are the kinds of choices that women in our country have to make. And then they’re therefore stressed about having to make those choices. And that increases their risk of having all kinds of poor birth outcomes. So, we really only have one real medical treatment for premature birth and we’ve been using it for a while.
I wish it were around when I had my son 23 years ago, and that’s a progesterone injection. And, that has been shown to relax the uterus. We have stitches that we can use is called a cerclage to try to hold your cervix, to keep the baby in for more time. And there’s only a certain indication for that as well. But really our main line of treatment has been being able to, provide this injection to ensure and hope that your uterus does not contract and relax your uterus. So, you don’t have the baby too early.

Sally: So, will you talk more, Dr. Joia about certain populations disproportionately affected by premature birth. You mentioned a non-Hispanic African American. Can you get into that in a little more detail? So, we know which populations we’re talking about?

Dr Joia: I’m that population. So black women are more likely to have a baby early in the United States and around the world and for my own self. When I was training in medical school, the residency, that’s where we stopped the conversation. When I had my son, the risk factors were having a previous history of a pre-term birth. I didn’t have that. My daughter was born full term, having a low socioeconomic status.
I didn’t have that because I was college educated and my parents are medical professionals. And then having a STI, I didn’t have that. And so, when we go down the list, the only risk factor I had was being black and what we haven’t been able to articulate or have a conversation around is that doesn’t mean that there’s something about my vagina because my skin is black that makes the baby come early.
But all the different impacts of having a social and political construct around race causes more stress and more harm to certain groups of people. So, we in the United States have higher rates in general of premature birth, even with white women in this country than in other countries, because we don’t put in some of the needs that people have for every day. And we haven’t been able to disentangle the stressors that our bodies are impacted by things that happen outside of us. And, they cause us to have responses.
So, when you’re stressed, you get headaches. People can relate to that, or if you feel nervous about something, your heart starts racing well, if you’re always stressed and nervous, you’re constantly worried and your heart’s racing and you’re having chemicals moving through your body that increase your risk of having the baby early.

Dr Moley: And I think that exactly what you’re saying is true and that behind all that stress and all that implicit bias and sort of a constant stress, toxic stress, it does lead to biological changes that potentially, we could also find the cure or the treatment for those biological changes to prevent that.
It doesn’t mean one is taking away from the other, but I think together changing the social determinants and finding a cause that we can then potentially treat until we can correct the social conditions would also be a reason to think about research as well.

Sally: Can both of you talk for a moment about the link between maternal health and the baby’s health and break it down a little bit for listeners?

Dr Joia: Yes. We know that the number one reason for infant death is premature birth.

Sally: Wait, say that again, the number one—

Dr Joia: –cause of infant mortality in the United States or around the world is premature birth. So that means that the babies are born too early. And so, mom is really the only vehicle for that. My son wasn’t born early because he did some magical thing. That was around my body and what was happening in my life. So, moms’ health, moms’ stressors, we talked about preeclampsia and risk of having your blood pressure become really high before it’s time for you to have a baby risks your life, and also risks the baby’s life.
There’s a lot of data to support that the higher, the risk when there’s maternal illness, you risk also infant illness. So, there is a direct link between mom and baby and their health outcomes. And for a long time in this country, we focus a lot on baby baby, baby, and thinking about even pre-mature birth as a how we can fix the issues.
What we need to do on the outside without really thinking through the link between mom’s health and the stressors we put on mom and how that also creates changes in baby and increases the risk of the baby coming too early. And I’m sure
Dr Moley: has more to add to that.

Dr Moley: For decades we were focusing just on the babies after they came out, but science has shown that it’s really not a signal that we think that’s coming from the baby, but it’s really the mom’s health, the mom’s well-being and the mom’s biology, that can lead to pre-term birth. So, I think this is something that is a new shift in our thinking about pre-term birth and unfortunately the thing that’s changed in our country is that women are waiting to have babies until later understandably so. But a lot of times those moms have chronic conditions already at an older age, like high blood pressure or diabetes, or being obese or overweight, all of which can lead to pre-term birth.
So, it’s something that we have to take into consideration, that it’s definitely the mom’s health that should be treated equally, if not more importantly, to ensure healthy babies being born and not only healthy, but live babies. As Joia had said I think the March of Dimes has data to show that two babies a day die of pre-term birth in this country, which is very high.
We are higher than any European country. We are higher than even some of the African nations. So this is a big problem. And something in this country is very different than what’s going on with women in other parts of the world. And that’s really what we’re trying to figure out.

Sally: So, two babies a day is a huge number of babies, dying of prematurity. What are we doing wrong? Or why are more developed countries, including some of the countries you said, less developed countries are doing better than we are. Is it lack of healthcare, access to healthcare? Is it poverty?

Dr Moley: Yes.

Sally: Is it age of the mom?

Dr Moley: Yes.

Dr Joia: So, we did this, we try to talk a lot about social cognitive health and how in this country, what would be really transformational is for us to think about health, not simply as a transaction of providing health insurance, but all the other things, one needs to be healthy. Those countries in general, including the countries in Africa, have a better social connection and safety net. When you know that when the baby comes home, there’s going to be a whole bunch of people to help you. That’s a very relaxing feeling.
I’ve delivered patients from other countries who they come here and they’re like, “Wait, nobody’s coming to my house to help me. I’m just going to be all on my own.” That narrative of survival of the fittest, individualism really shows up a lot when it comes to the conversations around maternal and child health and the outcome of not having support of not connectedness of not protectiveness.
So yes, most of the countries. I don’t want to over speak, but most of the countries who have better birth, I know most the countries that have better maternal health outcomes they have universal healthcare, which now doesn’t mean single payer. It just means they believe everyone has the right to health. And so, they figure out through whatever mechanisms to ensure that people have access to health.
If you wait to give someone insurance, which is what we currently have done for generations here, simply created Medicare Medicaid. If you wait until they’re pregnant, to allow them to have access to health insurance, then all the years of chronic illness that Dr. Moley mentioned are already there. And you’re not going to fix diabetes on your first prenatal visit. So, we created a system that has people not getting health insurance, not having access to care, having it late and having it on your zip codes, the quality of it is based upon your income and not necessarily on your needs.
And so, all of those are persons that we’ve made and the, as political choices that then play out in our health outcomes. It’s both a political shift that we have to make to invest in the health of all people, no matter their education, income, religion, geography, to believe that everybody has value and should have access to health as a right.
And then it’s also that we don’t have the cultural belief that we’re supposed to be there and connect with each other and support each other and value that after birth mom is not just supposed to take six weeks and go back to work like that. All the other countries that have better outcome, their mom gets to stay home for a year, nine months, they have paid leave. They have paternity leave.
They have all this other value around birth and what it means to the nation and how important it is for the economic outlook of the nation to support both mom and baby and family, to ensure that they can thrive in pregnancy if we have not made that commitment in the United States.

Dr Moley: And the other thing I think too Dr. Joia has said is that, in the European countries, at least, especially like Scandinavian countries and even some of the Eastern European countries, preconception health care is really emphasized. People understand that it’s definitely the mom’s health. And again, they are seeing gynecologist on a regular basis.
They can plan their pregnancies. They have much less unintended pregnancies because they have access to contraception. And it’s just an environment that’s very supportive of women before pregnancy and their choices, again, adding to less stress. And the other thing that Dr. Joia said, they care about every child that’s born. There’s a cultural difference that is there. That is very supportive of young moms, whether they’re single or married.
The other thing is most of the European countries and even Eastern European countries are stable women who have a stable partner in either a marriage or some civil union, and that’s strikingly different than it is in our country. So, there are lots of differences and that’s really what we’re trying to figure out is what are the social differences and it doesn’t seem like there’s biological differences, honestly, it’s a big question.

Dr Joia: And I think honestly, as an OB GYN, when you’re trained for years to believe that we need to look for these biology things. I did even studies and research in medical school and residency looking for all these biological things. And then when you look at the countries that do better than us, there is nothing about biology. They have a better social safety net. They have a better infrastructure around health. They’ve committed to the country to value women’s choices, women’s rights.
They make room for people to have connectedness and to say, as a country, we need more births. We need people to have babies. And so, we’re going to support them in whatever choice they make. And that frame, just having that as a vision for your identity as a nation changes, how you then have resources, changes how you decide, where are you going to play. Who gets the resources, how you value them and who gets access to them?
So that is a very different frame. And I think you’re seeing once again, during the crisis, the outcome of us not having that as our American frame for how we think about healthcare and how we think about health and making sure that if you’re in rural Tennessee, we see people in Alabama today and other parts of the country who are, who have not had access to health insurance and who have not had health care.
So, they don’t know that they have medical illnesses. And so, they have risk factors that they’re not even aware of. So then when you hear that you are at risk from something because of having these risk factors, you think you don’t have them, but it’s not that you don’t have them. It’s just that you haven’t had insurance to have them even diagnosed.

Sally: I was in Scandinavia last year. And the tour guide told us that women and men, I think the women get something like two years of paid leave. It sounds crazy compared to our American system. But you’re talking about really good prenatal care, universal healthcare. Medicaid expansion has made a big difference I’m sure and there are many States that refuse to expand Medicaid like Alabama, I believe Mississippi,

Dr Joia: I’ll say Louisiana, once they did Medicaid expansion saw improvements in maternal and child health outcomes. They only have been four years. Imagine if we had 50 years of that. So that’s the opportunity we can see just that quickly people having that, of blaming the patients that they have, hypertension and diabetes, without even giving them a mechanism for being able to manage those things through having insurance.
To go get seen and get evaluated and get medications that narrative of well, you’re so old, you’re so fat, you’re so sick. You shouldn’t have a baby. It has been killing us. It’s been killing our nation and it’s been killing all races, everybody. Because it says that we can blame you and we don’t have to make choices and investments in your health and your care.

Dr Moley: The global rate of pre-term birth is around 9 percent to 10 percent of all babies that are born are going to be premature. But most of the European countries sit around five. So, the social determinants and the environment and everything definitely should bring us down to five in this country, but we’re at above average, we’re at 9.9 this year for pre-term birth rates.
So, we definitely have a lot of work to do to get us down to 5 percent. I think it’s a dual effort of finding the biological causes, but also realizing that those biological causes are probably due to the environmental stressors that these women in this country are facing.

Sally: And very preventable. Let me raise the issue of a lot of the States that refuse to expand Medicaid for whatever reason. I never understand why that would be pre-term births are very expensive to the system, healthcare system hugely expensive. So, it doesn’t make any sense to not provide it. You know where I’m going with this. Not to provide the kind of care that reduces the incidence of prematurity.

Dr Joia: I can go back to my own experience. My son, 23 years ago, his ICU bill NICU bill was $600,000. And I remember the time I had HMO and I paid my $20 co-pay or whatever it was to recover. Thank you for that.

Sally: Glad you had the HMO.

Dr Joia: If I had 80/20 insurance. I would have had a $60,000 bill.

Sally: Right.

Dr Joia: And so that is really expensive. Having a pre-term birth is very expensive to the system. And we’ve spent a lot of time working with managed Medicaid companies with States thinking through, one baby, each baby cost $600,000 or a million dollars. And, how that is such a strain on the economy, a strain on their budgets. What we get lost on the circle of conversation is because if we’ve always believed there was some biological thing we were looking for.
It’s hard for people to see that investing in things like home visiting, investing in ensuring that if a person needs the progesterone injection, that if they have an hourly wage job, that we will make sure that case management takes it to them and they can do self-injection.
It’s like all the things to allow people to have the things that they need, but that’s worth the investment. And, having insurance prior to being pregnant, expanding Medicaid, that those things will balance out the cost of the other side. I think it’s hard for people to see the connection because we didn’t connect those things for them very well in the past.
And I’m hopeful that now we’re all on the same page that you can decrease premature birth. If you invest in women, the entire lifespan. Invest in sex education, invest in access to information that keeping those things away from people only increases your cost.
If you don’t invest in having preventative healthcare services and school clinics, all those things you are paying for that in the other end, when it comes to having a pre-term birth. I don’t think that that’s how we have historically framed the conversation. And so, the more and more that we do it that way, we do get some traction. I do think at the point now we have so much data to support that.
That’s true, that people who are resistant, they are not interested in the actual fact. I think it’s becoming really hard to justify not investing in preventative health for people and that the cost benefit of investing in preventative health.

Dr Moley: And, I’d like to add to that too. So, at the March of Dimes, we yearly put out a March of Dimes report card, which grades States based on rate of prematurity, but in 2019, we actually added several other indicators to give us a more complete picture. And we’re looking at the total cost of pre-term birth now, including medical costs for children, medical costs for maternal delivery, early intervention, special education services for the children and a loss of labor market productivity.
And it totaled $25.2 billion in 2019, which averaged about $65,000 per pre-term birth. And that varied significantly from state to state, which is really indicative of the variety of service bundle prices between the States. So, this is a huge societal problem that has significant productivity and economic ramifications. And, some other interesting facts are that, babies and moms sometimes are covered by Medicaid, but not always. Right now, it depends on the circumstance of the individual.
If a pre-term birth is significant early enough, like Dr. Joia, the infant may qualify for Medicaid disability if they don’t have private insurance. But it may not, if it’s a later pregnancy, which is where the majority of preterm births, occurs between that 34 to 36 rate. So, it’s possible that’s going to be another societal burden and cost for these babies.

Sally: Okay. Well, let’s talk about some policy changes. First of all, Dr. Joia, I believe I saw you testifying in Congress, on this issue. And you were, in a hearing that included a bi-partisan group of members of Congress, who seemed very interested in how we tackle this problem and get our numbers down. What we’re doing wrong in the U.S. that makes our numbers twice what other developed countries are in terms of premature births? So, I also know that March of Dimes and you and many others have been involved in a bill that is before the House of Representatives, the Maternal Care Act.
And we’re talking about all the problems that we’re seeing and how we haven’t looked at the problem with prematurity, holistically, and this bill seems to tackle that problem. I’m very excited about it. It was introduced by Congresswoman, Alma Adams she’s from North Carolina, but it has many great co-sponsors. So, I know the March of Dimes was involved. I know Dr. Joia, you were as well crafting that bill, tell us what we need to do. And if this bill would provide some of the answers to the problems that you guys have raised.

Dr Joia: We were really honored last year to be a part of the creation of a Black Maternal Health Caucus. And, Alma Adams is one of the co-founders of it with, Congresswoman Pressley who was a nurse. And so, it’s important that we have people in Congress who have some kind of medical background. We know that, so much of this information so much happening in this shift is so important.
And when we were able to testify, really, it was also to educate Congressmen or Congress people congressional people around this importance of investing in moms, even after they have a baby. So right now, in many States, including States that have done Medicaid expansion, once you have the baby, the baby keeps the same Medicaid for a year, but mom after six weeks is dropped from Medicaid.
And if they don’t have expansion, she doesn’t get anything else. If they do, then she has to apply to get Medicaid expansion. And if anybody’s had a newborn, especially if you have a newborn that’s still in the ICU, that’s a lot to have to think about and worry about. So, there are provisions in there about extending Medicaid for a year because the science is showing us that women are dying for up to a year after having a baby.
So, losing your insurance after six weeks is really not based on any kind of evidence or science. It was a guest that we made about a hundred years ago. Their postpartum was six weeks, and that’s when your uterus involuted, but there’s so many other things besides your uterus that go into postpartum around breastfeeding, around access to mental health, postpartum anxiety, postpartum depression.
And if you add on that, you had a premature birth, then you really need some mental health capacity. So, there are some language in there around that, and really investing in data. The bill that I was honored to testify before Congress around, was the first bill that invested in monies to the States to cover just counting maternal deaths. We haven’t invested in counting the number of women in the United States who die from complications of childbirth. We do count infant deaths.
And so, we have an accurate count of infant deaths, but we had not invested in an infrastructure to accurately count maternal deaths. And as we know, one of the main causes of infant death is premature birth. And we know that sick moms or moms who have injury are also more likely to have a premature birth. So, it’s all tied together.
So, the goal of the bill is to try to break some of these silos and only focusing on downstream events, without fixing some of these upstream causes of infant and maternal death.

Sally: Is it a bipartisan bill?

Dr Joia: It is a bipartisan bill. Yes. So, we are excited about the opportunity. Right now, everybody loves moms and babies. I don’t know that ever doesn’t happen, but usually everybody loves babies, but now people start to care about and love moms too. And both sides of the aisle are concerned about what happens in the world. The United States is the only industrialized nation where maternal mortality numbers are going up.
And so, on both sides of the aisle bi-partisan, that’s not something that we’re proud of. And we’re wanting to make sure that we invest in infrastructure that helps moms and truthfully it helps birthing people. Then it will also help babies because birthing people are the candy wrapper around the baby. And the more support, the more infrastructure, the more resources they have prior to giving birth, the healthier the baby will be. And the longer mom will be able to maintain a pregnancy.

Sally: And this is a policy priority for March of Dimes as well, Dr. Moley?

Dr Moley: Yes. Yes, very much. We’ve been lobbying since it started. And again, for the same reasons that Dr. Joia has mentioned, increasing maternal mortality review committees is key to that. And, establishing funding and reporting of state data to the CDC is really going to hopefully at least elucidate what it is. What’s the most common causes of maternal mortality?
We don’t even know that in many States and we need to get a handle on that in order to make a change. And I think state-based perinatal quality collaboratives have also increased maternal and infant outcomes, by enlisting providers and public health officials in improving quality of care for moms and babies. So, it has all the right pieces. And I think we definitely have some momentum on this one, and hopefully it will be able to get signed into law.

Dr Joia: And I would be remiss if I didn’t mention that it has in there some language around implicit bias. And I think it’s important for us always to just point out why that’s so critical, because we know despite income or education that black women are still more likely to have complications in maternal and child health. And so, some of the biases just like I said, I believed I was taught that the reason I had my baby early was because I was black.
And therefore, there was something innately about my blackness, like inside of my body that made my baby just come early. And therefore, that belief makes you then act very differently about how you treat patients who are black, around premature birth. And so, I’m doing some of the biases and assumptions that we have around, I’ll give a concrete example.
There’ve been some data that shows that black women are less likely to get their pain managed when they’re in labor, when they look and review the chart posts afterwards, they see that the patient will ask for an epidural and it will take longer ask for pain medication and it take longer than their white counterparts. And that comes from a history of just believing that black women can handle pain better.
Which comes from a history of Dr. Cartwright, sorry Dr. J Marion Sims and the founder of Modern Gynecology traveling around in United States with three black women who were enslaved Lucy, Betsy and Anarcha. And performing surgeries on them without anesthesia and, then proclaiming that he could do that because they didn’t feel pain. So, when you ask medical students today, recently there was a study done at a medical school and they still believe that black people didn’t feel pain the same way the white people do.
So, all those biases. Bias is inherent. We all have biases, but we do not have to have bias around race, around gender, around class. Those are things that we learn and we can unlearn. And so, the goal of the implicit bias trainings is to really delve into why we believe these things about groups. It could be around different ethnicities. We have assumptions around age, obesity is one of the biggest biases we have in United States. And so really to unpack why we have these beliefs and then how can we ensure that they don’t interact and interfere with our ability to really care for our patients and make sure that they have better outcomes and thrive.

Sally: We have a few minutes left. I want to get back to one or two other questions that came up in my mind. And that is we talked about women waiting longer and being a little bit older having babies. And then we talked about very young women having babies. Aren’t those both risk factors.

Dr Moley: Yes. They are for different reasons. Older women, again have higher rates of comorbidity. And that’s the main reason younger women were not as clear the causes for that. Some again have access to early prenatal care. That I think that’s an observation that this kind of dell curve, tends to happen in a lot of biological situations and reproductive health. And, the basis for that isn’t fully understood.

Dr Joia: Yes, for sure. And where it becomes complicated with the equity lens is if we live in a country that says you should go to school, get your education, get married before you get pregnant. That pathway leads you to waiting and waiting and waiting to get pregnant. And if you are a black woman or an indigenous native, and you’ve been dealing with the stresses of life for a long time, by the time you wait, you now have hypertension, diabetes, and now you want to get pregnant at 36. And it’s a lot more complicated.
And so how do we even discuss, I can say I have a 27-year-old daughter, what is the best age for a black woman to have a baby? And is it helpful for them, for us to suggest that we should wait until they have completed all education, gotten married, settled down like that sociological push to have this narrative of waiting. Doesn’t meet the biology of the reality of our current situation, where our bodies have been through weathering.
And now our bodies are not prepared for pregnancy as they would, if they would have been prior to doing the schooling. And the difference between my daughter who was born three days after her due date and my son who was born at 22 weeks.

Sally: So, before we learn from you, how you think advocates can be most helpful, you were talking about treatments for prematurity. There doesn’t seem to be a whole host of treatments for a condition that’s obviously very serious and very expensive. Can you talk briefly about that issue?

Dr Joia: Yeah. It’s really exciting that we had this opportunity to find this injection that we rely on, it helps your uterus to relax so that you don’t have as many contractions. And we’re a little worried right now because there’s a risk that it might be pulled from the market. Studies were done as we’ve been talking this whole hour. The study was done in a different context, to test, to see if the medicine worked or not. It was done in a country that has healthcare and has all these other things.
So, it’s hard to determine to extrapolate data from a country that doesn’t have the same social context, not that the people, have magically different genes than we do in this country, but they do have a very different social context than we do. If it’s a use that extrapolate their findings to take a medicine away in the U.S. that we have known that doctors depend on, that doctors will still try to figure out how to get if it is removed. And so, we need advocates to really help us to ensure that we can keep the weekly progesterone injection available because patients across the United States need access to that medication.

Sally: And you found the medication to be effective?

Dr Joia: Yes, yes. All of my colleagues. We cannot imagine if it was taken off the market. That is all we’ve had, once it came and we were excited and we’ve been using it and we found it to work. And so, nothing is perfect because you’re trying to fight against a lot of different hormones that are happening in your body. And there’s a lot of things going on in people’s lives. And a lot of reasons why it will be hard that the medicine is having to fight against a lot of different things. But it has been effective for many patients and to have it not available, it would be tragic.

Sally: So, we’ll add that to the list of many things that need to be addressed and fixed, to reduce our levels of prematurity. So, in terms of advocacy, Dr. Moley, do you have any other suggestions, the March of Dimes has been such an incredible organization over your history in fighting polio and fighting prematurity we’re allies and advocates as well. We love moms. We love babies.
The National Consumers League was really a leader in our early years on infant and maternal health and working on what is known as the Sheppard-Towner Act, which was the first federal bill to support women and infants. We want to be part of the solution too, and we have many allies in this fight. So, do you have any words of wisdom for us? What’s the best way for us to work alongside you?

Dr Moley: Yes. We have a full team of government affairs staff that work quite around the clock, really lobbying congressmen and senators. And we do our best to really put forward the importance of women and children’s health and really more recently about maternal mortality and that more women are dying in this country of having a baby. And I think overall the bipartisan support has been inspiring.
And I think we need to do that. And I can just speak also, especially during this crisis we’re having right now with COVID-19, we really pushed hard to get more data on pregnant women to potentially lobby for more thoughts around clinical trials of things like vaccines, or even some of the therapies in pregnant women and babies.
This is an area that we’re very passionate about making sure that lactating moms and pregnant women really are included in clinical trials and in treatments for very deadly types of problems. And that also includes pre-term birth. And, that’s also another reason why we don’t have more drugs in our armamentarium of medicines to use, to treat pre-term birth is that many pharma and the big funders of drug research, don’t really want to go into the field of maternal health, partly for litigation reasons.
I think it’s critical that in a lot of cases, there are not medical dangers, and we know that they’re not medical dangers, but they rather not allow it to occur or have their clinical trial, to include pregnant women. But I think this is something that, we are lobbying for and working together with this group called Preglac, which is the research on pregnant and lactating women, really is something that we’re advocating for quite strongly at this time as well.

Sally: Well, you’ve given us a big to-do list. Thank you both very much and enjoy your weekend. Stay safe.