Quest to Improve Maternal And Childhood Health: Dr. Diana Bianchi Talks About Research Mission at the NICHD

Dr. Diana Bianchi – National Institute For Child Health and Human Development

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Female : Welcome to C onversations on H ealth C are with Mark Masselli and
Margaret Flinter , a show where we speak to the top thought leaders
in health innovation, health policy, care delivery and the great minds
who are shaping the healthcare of the f uture. This week , Mark and
Margaret speak with Dr. Diana Bianchi, Director of the Eunice
Kennedy Shriver National Institute for Child Health and Human
Development at the National Institutes of Health, dedicated to
researching and promoting the advancement of maternal , infant child
and adolescent health right into adulthood. Dr. Bianchi is a noted OB -
GYN, pediatrician , and medical geneticist , and talks about promising
research underway. Lori Robertson also checks in, The Managing
Editor of FactCheck.org, loo ks at misstatements spoken about the
health policy in the public domain, separating the fake from the facts .
W e end with the bright idea that’s improving health and well - being in
everyday lives. If you have comments , please email us at
[email protected] , or find us on Facebook or Twitter or wherever
you listen to podcast. You can also hear us by asking Alexa to play the
program Conversations on Health Care .

Now , stay tuned for our interview with Dr. Diana Bianc hi , he re on
Conversations on Health Care .

Mark Masselli: We're speaking today with Dr. Diana Bianchi , Director of the Eunice
Kennedy Shriver National Institute for Child Health and Human
Development , part of the United States National Institute of Health.
Dr. Bi anchi served as the F ounding D irector of the Mother Infant
Research Institute at the Tufts Floating Hospital for Children at Tufts
Medical Center , where she also is a professor of pediatrics, obstetrics
and gynecology. Dr. Bianchi has done extensive resear ch i n prenatal
genomics. She earned her medical degree from Stanford , did her
residency in pediatrics at Boston Children's and her P ostdoc
fellowship in genetics at Harvard Medical School. Dr. Bianchi ,
welcome to Conversations on Health Care .

Dr. Diana Bia nchi: Thank you very much.

Mark Masselli: You oversee $1.5 b illion budge t for research , which is aimed in
improving child health . It’s bolstering maternal health and prenatal
care all the way through adult [ PH 00:02:06] . H elp our listeners
understand the r eal scope of the work at NICHD, and how your
strategic plan is taking the agency's work into the future ?

Dr. Diana Bianchi: Sure, first of all, the National Institutes of Health are the largest
funders of biomedical research in the world a nd there are 27 c enters .
N ICHD is one of those 27 institutes and we're named for President
Kennedy’s sister Eunice , who convinced her brother that there was a
great need to develop an institute that was specifically focused on

Dr. Diana Bianchi – National Institute For Child Health and Human Development

children and on people with intellectual disab ilities. About 55% of our
research dollars go to child health research , 30% goes to reproductive
health research, and the remainder goes to research for people with
intellectual and physical disability . A s part of our strategic planning
process , w e created a new mission statement. O ur new mission
statements is that NICHD leads research and training to understand
human development, improve reproductive health, enhance the lives
of children, adolescence and optimize abilities for all.

Margaret Flinter: Dr. Bi anchi , I'd like to just dive right in and focus on the issue of
maternal health, because we are seeing such alarming data on
maternal mortality in this country appears to be a particularly dire
issue for women of color . Share with us about this trend, and what
are the interventions that are necessary to address this public health
problem , and resolve w hat really is just a terrible example of inequity
in healthcare outcomes ?

Dr. Diana Bianchi: This is a public health crisis. Sadly, about 700 women in the Uni ted
States each year die of complications related to childbirth. Data has
shown that three out of five of these deaths are actually preventable.
T hat's where we need to really target our work. There's significant
racial and ethnic disparities in the rates of maternal mortality. For
example, black women are three times more likely to experience a
death around childhood than white women. A lso Alaskan n ative
women and American Indian women have about two - and - a - half times
the rate of white women. About half the births in this country are
covered by state Medicaid programs a nd that coverage right now
ends a t 60 days after childbirth.

Recent data have shown the complications of childbirth actually occur
up to a year following the delivery of the baby. T here's this gap in
time when women are not going to the doctor . P roblems that could
be detected if they were going to the doctor , cannot be treated a nd
that is a major problem. W hat NIC HD is trying to do is focus research
aimed at preventing or treating many of the c omplications of
childbirth, pregnancy , and this postpartum period. T hese include, for
example, hemorrhage, infection, hypertension that then can result in
a death a t stroke.

We've also invested about $80 million in something called the Human
Placenta Proje ct . We've all been connected to a placenta at one time
in our lives, but it actually functions as the organ that is providing your
oxygen , taking away your waste products , and giving you nutrition
during your fetal life. T he Human Placenta Project is aimed at
detecting problems that are going on during the pregnancy , so that
you can prevent complications later on. We are now recognizing that
there are abnormalities that you can see as early as the first trimester ,
which will give us an opportunity to interv ene. B y studying pregnant

Dr. Diana Bianchi – National Institute For Child Health and Human Development

women, which we do actually through our Maternal Fetal Medicine
Units around the country , we are able to contribute to the lifelong
health of these women .

Mark Masselli: Well, you s ort of pulling the thread on that . Y ou're continu ing also in
the area of maternal health is sort of focus in on medications that
women are prescribed during pregnancy . T hat's not an area that is
well researched. T he NICHD is maybe instructed or working with
Congress as a mandated task force over the past couple of years to
look at the issue. I'm wondering if you could shine a light on the goals
of the task force and its current status.

Dr. Diana Bianchi: We actually were directed as part of the 21st Century Cures Act,
which was a very large piece of legis lation that was signed into law at
the very end of 2016 . O ne of its provision was to create this task force
to a nalyze research specific to pregnant women and lactating women.
Because on average, about 90% of pregnant women take at least one
medication dur ing their pregnancy, and most women take between
three and five during their pregnancy. There's this old school general
assumption that it's much safer not to take anything . This may
actually harm the mother and her fetus. N ICHD convened a group of
experts from obstetrics, from nursing , from pharmacology to create a
series of recommendations. T he most important one was to include
an d integrate pregnant and breastfeeding women in the overall
clinical research agenda, and then provide training opportunities t o
expand the workforce of clinicians and investigators , s o that pregnant
women are protected through research , instead of from research.

Margaret Flinter: Well, I'd like to go to another kind of specific issue within your domain
and this research on reprod uctive health including fertility and
infertility, maybe also conditions that aren't so often talked about, but
we know are widespread, such as endometriosis. H ow do you
approach this as the institute in this area?

Dr. Diana Bianchi: We specifically put re productive health in our mission statement,
because really our research involves everything related to
reproduction from the formation of the reproductive organs through
some of the medical complications that ultimately result in infertility .
W e've decided to highlight endometriosis that affects one in 10
women. It results from endometrial tissue, which is the tissue that
normally lines the womb, but this tissue is growing in places outside
of the womb . I t could be in the abdomen, it could be in the lungs , and
it does cycle a nd bleed in those locations, which results in severe
pelvic pain. O n average , affected women spend that 18 days per year
in bed. I t also leads to infertility .

At N IC HD, w e have a specific branch that is devoted to gynecologic
health and disease , and they are funding research that is examining
the causes of endometriosis. We're also funding research that's trying

Dr. Diana Bianchi – National Institute For Child Health and Human Development

to prospectively identify biomarkers that could identify women who
really do have endometriosis. Currently, there's no diagnosti c test .
NICHD - funded research has recently led to the development of a new
medication that treats the pain associated with endometriosis. Also,
right here on our Bethesda campus where we have the NIH Clinical
Center , w e've just started a new program in ped iatric and adolescent
gynecology . T he focus of that program is to treat girls and young
women who are suffering from a variety of menstrual disorders.

Mark Masselli: We're speaking today with Dr. Diana Bianc hi , Director of the Eunice
Kennedy Shriver Nation al Institute of Child Health and Human
Development at the National Institutes of Health. You're also a
renowned medical geneticist with a special expertise on reproductive
genetics a nd your research is focused on non - invasive genetic testing
and how it can help identify illnesses in children , even facilitating
prenatal diagnosis and treatment . T hen , I'm wondering if you could
just talk a little bit about how it might focusin g on preventing illnesses
improving the long - term health of children who are at risk ?

Dr. Diana Bianchi: I think along with the Human Genome Research Institute , w e have co -
funded a recent large project, and it's called the N ewborn S equencing
in G enomic M edicine and P ublic H ealth P rogram . T his study has
explored the implications and the op portunit ies associated with the
use of DNA sequencing information in the newborn period . When I
was at Tufts, for example, in the newborn ICU , t here we would have
babies that -- they weren't necessarily premature, but they were not
thriving, and we didn't know what was wrong with them. W hat the
insight study had shown is that you can use whole genome
sequencing or whole exome sequencing to diagnose what is exactly
wrong with the sick newborns , and 52% of the case study, they
actually came up with the diagno sis. I t also had very significant
implications for families.

One of the center's was comparing the current standard of care,
which is newborns get a little stick in their heel, and there's a little
sample of blood that is taken, and the blood is analyzed t hrough
various proteins . W hat the investigators , in that part of the insight
project wanted to see was whether sequencing would perform better
than traditional he el - stick biochemical analysis, and it did not perform
better. There were significant number of diagnoses missed by DNA
sequencing that were picked up with the biochemical testing.

T hen there was another part to this very interesting study that looked
at healthy newborns and did having information on the baby's DNA
sequence freaked out the parents . I t turned out that it didn't . 88% of
the newborns carried at least one mutation, which is what you would
expect . T he families felt that it was helpful information to do genetic
counseling and to help them with future pregnancy planning. Even

Dr. Diana Bianchi – National Institute For Child Health and Human Development

more recent re search has suggested that if you combine artificial
intelligence with the DNA sequencing information, you can greatly
speed up the rate in which you diagnose rare disorders. I t took about
two weeks to make a diagnosis. N ow , the diagnosis can be made in a
d ay or so , a nd that has tremendous implications for the care of that
child as well as cost. So much of genetics in my practice lifetime has
been focused on making a diagnosis. W e're seeing such a shift now in
rare genetic disorders , in which specific treatm ent is becoming
available a nd that is so exciting.

Margaret Flinter: Dr. Bianc hi, a n other area of focus was adolescent health . What drove
you to update your mission statement with that specific focus and any
direction that focus is going at this point in time ?

Dr. Diana Bianchi: I'm a pediatrician , as well as a parent. W e all know that it's a critical
time period in which there's so much change undergoing in the body
as well as the brain and we're analyzing where we invest money. We
realize that adolescenc e was a major gap area , and so w e created a
Trans - NIH Pediatric Research Consortium. What things we found was
that every institute had this gap in adolescence in the transition to
adulthood , especially important for teenagers with chronic disease,
and espe cially those with intellectual disabilities. At NICHD , we're
focusing, one is on learning to drive, which is a real rite of passage for
most teenagers. One of our investigators had parents cars equipped
with special cameras, and filmed teenagers for the fi rst few months.

[Informal Talk]

Dr. Diana Bianchi: T hey found not surprisingly that those first three months the
teenagers were eight times more likely to get into a serious accident.
There needs to be a much more gradual transition into complete
independe nce while driving .

Another area of research for adolescence is on prevention of HIV. We
funded a study , in which teenagers who are at risk for HIV infection
were given a single pill of Truvada . T his is part of P re - E xposure
P rophylaxis for HIV or PrEP . The NICHD studies showed that the drug
was effective at reducing HIV with no evidence of harmful side
effects. They were particularly looking at effects on bones and
kidneys. T he results provided important evidence to the FDA , which
ultimately led to the drugs approval. One of the things that I started
was to invite the voice of the participant . We invite someone who has
lived with the condition and has been treated by something that has
come out of NICHD research , s o we can see the benefits.

R ecently, we had a young man named , Maurice , who talked about his
experiences and what the benefit of taking the single pill was. We also
had a recent woman who shared her experiences with endometriosis
and the long painful journey associated with that.

Dr. Diana Bianchi – National Institute For Child Health and Human Development

Mark Masselli: Your Institute is doing so many things a n d certainly there's no more
important public health crisis than the opioid crisis today . I t's your
agency that's focusing in how this crisis is affecting women and
newborn children. I read a story the other day , in West Virginia where
they were setting up a daycare center for newborns who are affected
by the opioid crisis. I'm wondering again, if you could tell our listeners
what efforts are underway.

Dr. Diana Bianchi: Yeah . F irst of all, we're very grateful to Congress that authorized
additional money in this budget year as part of a large program called
Helping to End Addiction Long - t erm or the HEAL initiative . Because
the rates of newborns exposed to opioids via their mother has
quadrupled , w e started a series of clini cal studies to determine
exactly what's going on across the country. We were really surprised
that there is no standard of care . T he problem with these babies is
that they are very irritable , they don't sleep well , t hey're difficult to
console , and they ha ve later developmental and educational
problems. w e felt that it was very important to try to establish some
sort of national standard. F or example, some nurseries are treating
with morphine , some nurseries are treating methadone , o ther
nurseries are doing something called eat, sleep and console , where
the babies get no drug treatment at all. It's very important to know
the best way to treat these babies . Y ou would think that no drug
treatment would maybe be preferable , but we don't know what
happens to the se babies when they leave the nursery and they go into
these fragile families .

A n important part of the HEAL program is what we're calling ACT
NOW , A dvancing C linical T rials with N eonatal O pioid W ithdrawal
S yndrome . T hese will be performed in nurseries aro und the country
where there's a high prevalence , you mentioned West Virginia. O ne of
the things we want to find out is , if not tr eating these babies is safe ,
n obody has really studied that in a prospective randomized.

Margaret Flinter: We've been speaking today with Dr. D iana Bianc hi , Director of the
Eunice Kennedy Shriver National Institute for Child Health and Human
Development at the National Institute of Health. You can learn more
about their work by going to ni chd.nih.gov , or follow her on Twitter at
nic hd _nih . Dr. Bianc hi , we thank you so much for your
groundbreaking work , your leadership over many decades in
advancing research in the health of children , adolescence, and all
people , and for joining us on Conve rsations on Health Care today.

Dr. Diana Bianchi: Thank you so much for having me. It's been great .

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Mark Masselli: At Conversations on Health Care , we want our audience to be truly in
the know when it comes to the facts about health care reform and

Dr. Diana Bianchi – National Institute For Child Health and Human Development

policy. Lori Robertson is an award winning journalist and Managing
Editor of FactCheck.org, a nonpartisan, nonprofit consumer advocate
for voters that aim to reduce the level of deception in US politics . Lor i ,
what have you got for us this week ?

Lori Robe rtson : The Census Bureau in September released its report on health
insurance coverage in the United States in 2018, finding that the rate
and number of the uninsured increased from 2017 to 2018. The first
time it has found a yearly increase since the Affo rdable Care Act was
enacted in 2010. In 2018 , 8.5% of people were uninsured for the
entire year , t hat's up from 7.9% in 2017 , and it's an increase of about
1.9 million people. Most Americans with insurance get their coverage
from private health insurance c ompanies. 67.3% of people have
private coverage, with most getting that coverage through their
employment. Those with Medicaid coverage dropped 0.7 percentage
points from 2017 to 2018 to 17.9% of the population. Medicare
coverage went up by 0.4 percentage points, covering 17.8% of the
population . T he percentage of children without insurance went up by
0.6 percentage points.

The Census Bureau uses data from the Current Population Survey and
the American Community Survey making this measurement
dependent on a large amount of responses. The Census Bureau also
released information on income and poverty, finding that the median
household income in 2018 , $63,179 , wasn't statistically different from
2017. That comes after increases in the median household income fo r
the three years prior . The official poverty rate went down , however ,
by 0.5 percentage points . The rate was 11.8% in 2018 .

T hat's my f act c heck for this week. I'm Lori Robertson, Managing
Editor of FactCheck.org.

Margaret Flinter: FactCheck.org is commit ted to factual accuracy from the country's
major political players and i s a project of the Annenberg Public Policy
Center at the University of Pennsylvania. If you have a fact that you'd
like checked, email us at chcrad io.com . We’ ll have FactCheck.org 's Lori
Robertson, check it out for you here on Conversations on Health Ca re.

[Music]

Margaret Flinter: Each week conversations highlights a bright idea about how to make
wellness a part of our communities and everyday live s. Ten s of
millions of people around the world have conditions that make it
impossible for them to speak on their own , requiring them to adopt a
computerized voice box for communicating. Perhaps the most well
known of these folks is the physicist , Stephen Hawking .

Stephen Hawking: I would have thought it was fairly obvious what I meant.

Margaret Flinter: The problem is that sound of Hawking , speaking through his voice box

Dr. Diana Bianchi – National Institute For Child Health and Human Development

is the same voice sound say that a 10 - year - old girl with a neurological
disorder might be forced to use as well . Because they're just haven't
been many voice options on the market.

Female: In the US alone , t here are 2.5 million Americans who are unable to
speak , and many of them use computerized devices to communicate .

Margaret Flinter: At a recent TED Talk , speech researcher and innovator , Dr. Rupal
Patel , showed a program she has launched that can change that
reality , Vocal ID .

Dr. Rupal Patel : I thought there had to be a way to reverse engineer a voice from
whatever little was leftover , s o w e decided to do exactly that. We set
out to create custom crafted voices that captured the unique vocal
identities .

Margaret Flinter: Creating a voice bank of donor voices that will allow voices to be
individualized for each unique patient , seeking to c ommunicate
through an electronic voice box.

Dr. Rupal Patel : Why don't we take the source from the person we want the voice to
sound like and borrow the filter from someone about the same age
and size , because they can articulate speech , and then mix them .
Because when we mix them, we can get a voice as clear as our
surrogate talker, and is as similar i n identity to our target talker.

Margaret Flinter: V olunteers like this little girl will read a series of simple phrases over a
several hour period.

Female: Things happen in pairs. I love to sleep . The sky is blue without clouds .

Margaret Flinter: T hen those phrases are matched with the voice footprint of the
patient being provided for .

Female: This voice is only for me. I can't wait to use my new voice with m y
friends .

Margaret Flinter: Such speech synthesis will give that person the dignity of a speaking
voice that is as closely matched to their own identity as possible. Dr.
Patel, who's a professor of computer engineering at Northeastern
University, has laun ched the website Vocal ID.com.

Dr. Rupal Patel: I imagine a whole world of surrogate donors from all walks of life,
different sizes, different ages , coming together to give people voices
that are as colorful as their personalities .

Margaret Flinter: W ith th e b ank of voice donors now building around the world, the
Human Voicebank initiative, matching vocal donors with millions of
people who seek to authentically communicate with friends and
family in a voice that most closely matches what would be their own.
Now , that's a bright idea.

Dr. Diana Bianchi – National Institute For Child Health and Human Development

[ Music ]

Mark Masselli: You’ve been listening to Conversations on Health Care , I’m Mark
Masselli.

Margaret Flinter: I’m Margaret Flinter.

Mark Masselli: Peace and health.

Margaret Flinter: Conversations on Health Care is recorded at WESU at Wesleyan
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