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June 22, 2021 55 mins

For too long, research on new drugs and therapies, the training health care providers receive, and public policy were all designed with only adult white men in mind. 


This week, Chelsea is sitting down with her mom, Hillary Rodham Clinton, lawyer and public health expert Terry McGovern, and President and Dean of Morehouse School of Medicine Dr. Valerie Montgomery Rice to understand how we got here and what we need to do to ensure our health care is inclusive and equitable for all.

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Episode Transcript

Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Hi, I'm Chelsea Clinton, and this is in fact a
podcast about why public health matters even when we're not
in a pandemic. Today, we're talking about what it takes
to build a public health system that actually reflects and
includes well the public. For a long time, research on

(00:23):
new drugs and therapies, the training healthcare providers received, and
even our public policy we're all designed with only adult
white men in mind. And while we've made important changes
over the years, we still have a long way to
go when it comes to making healthcare and all it
includes more inclusive. Later I'll be speaking with Terry McGovern,
a lawyer and public health expert who saw the harm

(00:45):
caused by excluding women from clinical trials for potentially life
saving HIV AIDS drugs early on in her career. I'll
also be speaking with my mom, Hillary Clinton, about her
work to make sure that kids are recognized as a
distinct population with distinct medical needs and not treated like
many adults by public health research and policymaking. But first,

(01:05):
I'm talking with doctor Valerie Montgomery Rice. Doctor Montgomery Rice
is the president and dean of more Health School of Medicine,
historically black medical school in Atlanta. With a long commitment
to health equity and excellence. Dr Montgomery Rice is a
renowned infertility specialist in researcher. Before coming to more House,
she was the founding director of the Center for Women's

(01:28):
Health Research at Maharry Medical College, one of the nation's
first research centers devoted to studying diseases that disproportionately impact
women of color. I began our conversation by asking her
what first inspired her to go into medicine. So, Chelsea,
thank you so much for having me. I will tell
you my story is a little bit different that I

(01:50):
didn't grow up always wanted to be a doctor. In fact,
I decided I was going to be a doctor because
I didn't want to man engineer. But I was raised
by very strong mother. My mother left my father when
I was six years old, and so we were pretty
much raised by my mother, and our life really changed.
My mother finally got a job at the paper factory

(02:12):
Georgia Craft in Macon, and she rose to be the
highest ranking woman in the paper factory, driving a big
truck ore forklift sort of type of machinery that dealt
with the paper. She worked there for twenty five years
and what she wanted for her daughters was something different,
and so she always talked to us about education being

(02:35):
the pathway out. And so I went to Southwest High School,
which in nineteen seventy nine was the largest high school
in the nation. My graduating class was a thousand, forty
nine students and I was the only black student in
the honors program. And my science teacher, MSUs Newbel said
to me one day, you're good in math and science,

(02:59):
and they are wanting more black kids to become engineers,
so you should go to Georgia Tech. And that was
pretty much the counseling that I had. So I went
to Georgia Tech major and chemical engineering. Long story short,
I was co oping with procting gambling. They offered me
a job. I essentially was doing kinetics of detergent sentences.

(03:20):
I'm sure I was working on tide. And one day
in the plant, I was doing temperature readings and I
had just brought this new outfit Chelsea, and I had
to put on the bunny suit, and I had to
put the both of cap on, and I had to
put on rubber boots, not like the stylish ones that
we have now, and I had to do these temperature readings,
and I was wiping the fog off of my glasses

(03:43):
so that I could do this temperature reading, and I
saw a reflection on myself and I said, you know what,
I'm way too cute for this. I need to do
something else. But it was an awakening moment for me
that I really didn't want to be an engineer. So
I went to the encyclopedia and I looked up mad
science and people, and one of the things that pops
up was medicine. And I decided to go to medical school.

(04:06):
So I went over to Spellman College, because a Georgia tech,
there were no premier majors at that time. And I
talked to the advisor there and the woman said to me,
you don't seem to know a lot about going to
medical school. And I said, I didn't know a lot
about being an engineer, and that's working out okay. And
she helped me to get into a premier summer program
at Harvard Medical School. And then I applied to Harvard

(04:28):
Medical School and got in, and sort of the rest
is history. But it was really about not wanting to
be an engineer and then loving math and science and
having courage that I learned from my mother to think
that I could do this. It's just extraordinary that you
had never thought about going to medical school until you
were almost kind of at the end of your college career,

(04:49):
and now you lead a medical school exactly no plans
for that either. But you know, I loved academic medicine.
I really did love teaching. I loved research, and I
loved clinical care, and academic medicine allowed for that. And
then I started to recognize, probably as I became an
associate professor, I got my tenure as as an associate

(05:13):
professor at the University of Kansas, I really started to
understand how you could have impact on who was educated
and trained. And I started more of an administrative focus
of understanding what influence really means, and it to me,
is about how the decisions you make impact of the
people lives. So you were able to find a path

(05:33):
to becoming a doctor, even though no one ever presented
that as a possibility to you. What can and must
we do to help other young people from underrepresented groups
go into medicine. We have to create a pathway that
students can first of all, see themselves in the role.
And Chelsea, I really believe that that starts in K

(05:54):
through five. So that you know the fact that More
High School of Medicine. We adopted a school truskevia Airmand
Global Academy. It's about three or five miles from the school.
The kids on free lunch programs. There's some economic challenges
in the community, but we adopted that school so that

(06:14):
we could do nothing else but go there and wear
our white coats and have those students to see themselves
in us. Now we've done a lot more. We partner
with the school. We've increased reading proficiency, increase math proficiency.
We train our employees to be mentors, where about a
hundred and twenty five hundred and fifty mentors who go

(06:35):
there every week to that school. And it's all about
the students seeing the possibility and increasing their capacity to
be competent in the sciences, which is required for any
type of health career. So I believe that what we
do in that K through five really doesn't matter. Do

(06:57):
you have more people now applying to the More School
of Medicine significantly so so this year we got eighty
three hundred close eight four hundred applications. We saw the
same thing with our p a program significant number more
double the number of applications. I think the pandemic has

(07:18):
led young people to think about how they can contribute
with medicine but also in service. One of the great
things that has happened with this pandemic is that people
see their ability to give more through their profession. And so, yes,
we definitely have seen an increase in the number of applications. Well,
that's incredibly encouraging. So what do you say to people

(07:42):
who don't think it's that important to really focus on
increasing the number of black doctors and healthcare workers or
Latin X doctors and healthcare workers. I'm a scientist and
I make a lot of decisions by data. The data
clearly shows, Chelsea that when you have culturally competent providers,

(08:02):
and most of the time the cultural competence is aligned
with either gender or race or some type of cultural identity.
That means that that provider and that patient are aligned
in some way, and therefore you see a higher rate
of compliance. And so I just gave my Alma mater

(08:23):
commencement speech, and I was really proud to do that.
I was also very proud to tell them stories of
what happened to me early on at Harvard Medical School,
a person coming from the South and actually being challenged
in some ways by the environment that I was in

(08:44):
as a black woman, one of only ten black students
in the class, and what that felt like and how
that limited some of my engagement because I didn't feel
that connection. So imagine that with a patient and a
provider when they can feel that connection and that patient

(09:04):
is able to actually be freer to answer the questions,
to tell some of the social factors that may influence
their ability to be able to get their medication, or
to adhere to the exercise regiment, or even get to
the doctor. And so it is really really important that

(09:26):
we have not just racial and gender alignment, but also
cognitive diversity. What do I mean by that people's lived experiences,
how they bring that into the room with the patient
to have solved for some of the complex problems. How
do you help teach that at more House? And how

(09:47):
do you think that aspect of medical education has really
shifted from when you were at Harvard decades ago? I
heard you say decades ago. I heard you say that
I was like a while ago, and I was like,
trying to not be too specific, and then I just
kind of s all right, Dr My coming less. It
was decades ago. And and Chelsea, my daughter just graduated

(10:10):
from Harvard Medical School last year in twenties, so it
was decades ago. And we are proud of the fact.
But it's unfortunate that we are only the third black
mother daughter cohort to I would graduate from Harvard Medicals.
So that tells you we have a long way to go, right.
So here's one of the things that we do. It
more high school in medicine. And I just before getting

(10:31):
on this podcast with you, we just did our orientation
and welcome our largest class of p A students who
are forty students in number. And Chelsea, there are only
three black men in that class. Because you know, we
have a positive of African American men going to medical
school or the p A school. Not only are you

(10:52):
dealing with them understanding how they're going to relate to
the community and their patients, you also are dealing with
them understanding how they going to relate to themselves and
each other. We have a holistic admissions process where we
try to select students not just based on their academic credentials,
but their life experiences so they may not be the

(11:13):
student with the highest g p A or the highest
m CAT or g r A score to get into
p A school. It will be an academic failed curve
because we want students who have different life experiences, because
we know that if we combine that with our educational
pedagogical experience and then what we do in the community.

(11:35):
So let's take the p A in the m D program.
Within the next two or three weeks of starting school,
they will all do a longitudinal community course for the
entire first year. They will be broken up into groups
of six or so and they will go out to
a certain part of the community and they will actually

(11:56):
do a needs assessment in partnership with them Unity. They
will select their project and they will do that for
the entire year and report on it as a part
of their grade. And all of our students participate in
what we call our Hell Clinic Health Equity for All

(12:16):
Lives Clinic, which is our student run community based clinics
that we do in mobile vans and in different parts
of the community where they serve at every point from
being a social worker to the patient navigator to being
the PSR person that checks the person in and then
providing care under the supervision of our faculty. We believe

(12:40):
that those experiences are what jails for those learners. How
important it is to be culturally competent and culturally responsive.
I will tell you we still have sixty five to
seventy of our students who choose to practice and underserved communities,
whether they're urban or rule, and sixty five seventy of

(13:03):
them who choose to go into primary care or critical
core specialties like e er our surgery and underserved communities.
That's a set of remarkable statistics. And I know that
you've spoken about and written about the need to ensure
that black people and women are included in public health
research and clinical studies. Why do you think we're not

(13:25):
where we really need to be in terms of real
representation and health research and clinical trials, and what do
you think would help us get to where we should be.
Early on in my career, I started the centerful Women's
Health Research and my Here Medical College, which was the
first center that looked at diseases that dispapportion to impact

(13:47):
the women of color. So I was a reproductive integronoledgist
running an IVF center at the university of Kansas doing
all of this work and trying to increase women opportunities
to achieve pregnancy. And i's are a great divide. I
saw black women who were coming in who were having
less opportunities to access IVF. I saw a Black women

(14:09):
who had more fibroid disease, more endometriosis that was going
untreated to the point that it was impacting their ability
to achieve pregnancy. So when I went down to Mahara
Medical College to be the chair of O. B. G
y N and took some of my research with me,
I decided, you know, I applied for ni H grant

(14:30):
and got a ten million dollar grant to start the
Center for Women's Health Research. And it was focused particularly
on Black women, looking at diseases that disproportionate impacted their
chances to achieve pregnancy. And then we started to advance
that to looking at breast cancer and all types of
other disparities. Right, But it was the first one, okay,

(14:51):
and that was in the early two thousands, but it
made a difference because it raised awareness. Now, I will
tell you with this COVID and team vaccine, we knew
we had to dispel these myths that people had around
the virus. We had to deal with the mistrust and
the distrust that was permeating. Of course, our community well

(15:15):
founded because of Tuskegee and because of the Mississippi apidectims stories.
Because of here, we had a lacks and we dealt
with that. We would have thirty thousand people on these
town hall meetings. We then started to focus on the
fact that we're gonna need to have blacks in these
clinical trial blacks and latinates and these clinical trials because

(15:36):
we were disproportionate impacted by these viruses. So we made
sure that we were on the n H panels, the
FDA panels, that each of our institutions would become clinical
trial sites. Again saying to our communities, we are in
the rooms where it's happening. We are part of the

(15:57):
decision process, and so I give you that to say
it is important that you have people engage in the
room whether decisions are being made, so that people will
not be left out and left out. And that's what
we've tried to do. And I think the COVID nineteen

(16:18):
virus pandemic has given us a pathway to see some
of our errors in the past and so that we
can create some changes that will be sustainable as we
continue to venture on in the future to eliminate health disparities.

(16:38):
We'll be right back to stay with us. Dr marcoy Rays,
I've found it quite painful, and if I found it painful,
I can't even imagine how you have found it over
the last year and a half of our COVID crisis,

(17:02):
where often the media narratives are like all these health
disparities have been revealed, and I keep thinking like you
just weren't paying attention, or like, wow, we have a
real disparity in COVID nineteen. I'm like or COVID nineteen
bread upon the already pre existing disparities that somehow we
were just comfortable slash complacent in accepting for generations. And

(17:26):
so I do hope that there will be a shift
in research dollars invested and in respect given. I agree
with you, and what I focus on every day is
what's possible. And so I look at this pandemic and
embrace the fact. As my daughter would say, that some

(17:48):
people are now woke. Okay, and they woke in the
sense that they actually didn't have a choice, but the
focus right because all the other things that were usually
distracting you, you couldn't do them, and so you paid
more attention to the media. You pay more attention to

(18:09):
the obvious facts that this disease was disproportionate virus and
disapportioned impacting people of color, not because they were black
or Latin X, because they were these central workers. They
were the one still out there picking up your trash
and delivering your Amazon box, and they couldn't work from home,

(18:29):
and so they were still in close contact with people.
So then maybe you started to say, well, maybe there's
an economic divide. Maybe people don't have all the choices
that some of us have. And so we have had
the opportunity now to see what disparities look like in
real time. And the question is, Chelsea, what will we

(18:51):
do about it? And I am a person who believes
that allocation of resources matter, and you don't give everybody
the same thing. You're gonna achieve health equity. You have
to give more to a group that's more disproportionately impacted
so that they can achieve their optimal level of health.

(19:13):
That requires courage, that requires bravery, that requires acknowledgement of
what we have historically done, and that we have made
eras we have been racists, we have been biased, we
have relied on the history to dictate our future, and

(19:33):
now we have the opportunity to change. How do you
either teach or help your medical students tap into their
own empathy and also resilience, and especially given what you
said about how many of your more house graduates become
family medicine physicians pediatricians, how allow your future doctors that

(19:57):
you're training to be able to you the work that
you clearly are such a leader in. The best thing
about being a health care provider are the patients that
you get to provide health care too, And that's where
you're learning comes from. Yeah, you can easily get lost
in the sigenus of medicine, but it is the art

(20:17):
of medicine, the art of caring that allows you to
become that health care professional that the world needs, but
that patient at the moment needs. And we teach that
not through Zoom. That's why we had to go back
as soon as we possibly could, because we could only
teach so much through Zoom. But that real experience comes

(20:39):
from that hands on, that engagement, that's hearing that story
and understanding what's inside of you that allows you to
see that patient for who they are and what they
bring to the table in their fullness, and then you
are able to provide the optimal level of care so
your life experiences, Adam. We tell our students that all

(21:01):
the time, tell your story. Don't be ashamed of your story.
It took me a long time, Chelsea to understand that
my resilience and grit came from the fact that I
was raised in a single parent household with the mother
who taught us that we could do anything, and having
that has allowed me to believe that anything is possible.

(21:24):
I wish you could be my doctor. You have three kids,
you don't need any infertility passions, so that is true.
But it's just I wish we all were lucky enough.
I wish we all didn't have to be lucky to
have doctors like you, and that's what we're trying to do,
a more house school of medicine. Well, Dr Montgomery Rice,
thank you so much for your time and today, I'm

(21:45):
hugely grateful it has been my pleasure. Thank you. You
can follow Dr Montgomery Rice on Twitter. She's at ms
M Prez. That's m S M p R. E s
and you can find more House School of Medicine on Facebook, Twitter, LinkedIn, Instagram,
and YouTube. My next guest, Terry McGovern, has been decades

(22:10):
working at the intersection of public health and social justice.
In she founded the HIV Law Project, where she fought
and one cases to expand clinical research around HIV AIDS
and to change the definition of HIV related disability status
to include women and other groups that have been excluded. Today,
she's a professor and chair of the Department of Population

(22:33):
and Family Health and the director of the Program on
Global Health, Justice and Governance at Columbia University's Mailman School
of Public Health. She's also a good friend and I
was delighted to speak with her for the podcast. Terry,
thank you so much for joining me today. And we
could start maybe with just the basics. What are clinical

(22:55):
trials and how do they at least a non pandemic
times normal to get conducted. Clinical trials happen in every
context where we're trying out a new drug or treatment.
It has been a long standing issue who's in clinical trials?
So my early years were spent as an HIV lawyer,

(23:17):
and I realized very quickly that there hadn't been enough
women in clinical trials, so we didn't know anything about
gynecological disease in HIV. So I would say over the
years there has been a hard fought acknowledgement that clinical
trials need to be inhabited by the people who will
be taking the drugs. Just a note on women and

(23:41):
women of childbearing potential have really had a hard time
being included in clinical trials. This dates back to palidamide,
where women taking philidamide had children who had all kinds
of problems, and instead of actually figuring out a process
by which we could figure out if drugs could be

(24:03):
tested on women who were of childbearing potential, the f
d A published a guideline in nineteen seventy seven that
said women of childbearing potential should be excluded from the
early phases of clinical trials. How that showed up to
me in nine as an HIV lawyer, was a doctor
calling me from Johns Hopkins to say, I want to

(24:27):
get my patient, a woman who is very sick, into
a trial, and they want to sterilize her before they'll
let her in. And so we used that case, and
we had a bunch of other women, also desperate to
get into HIV trials who were excluded, and we went
after that FDA guideline and got it rescinded. Of the

(24:52):
many hundreds, even thousands of possible medicines that are available
through prescription or over the counter, how many of them
actually do we have a good sense of how they
affect women? Or is the answer like not on most?
The answer is not on most. Something that really jumped
out at me and HIV work was when the women

(25:15):
would take the treatments. They would come in saying I've
been bleeding for months or I stopped bleeding, or you know,
nobody could tell them anything about the kind of side
effects on their menstruation, etcetera. And I know this because
I kept asking the doctors is there something I could
tell these patients? Is it there? And And because many

(25:35):
of the studies didn't have gynecologists, right, it can be
as simple as that. Going back to HIV for a minute,
when I started to collect the medical records, because people
when they are denied medicaid or disability, as a lawyer,
you get their medical records. I kept seeing in the
women who were being denied disability that they had all

(25:57):
kinds of gynecological disease, and there was nothing in the
AIDS definition that addressed gynecological disease. But you had thirty clients.
It was all over their records and it became clear that,
of course these things weren't picked up, both because there
were men in their early trials. And of course this
was devastating because that's why early on we were identifying

(26:18):
women when they were so sick, because nobody was picking
up that they might be positive. And that's the reason
globally women and girls are of HIV numbers. But but
it's profound, all the levels, the failure to include women,
the failure to include and look at gynecological symptoms. It

(26:40):
wasn't until we sued. We did a class action in
against Health and Human Services, saying that the AIDS definition
which they used to determine automatic eligibility was based only
on men and therefore it wasn't an inadequate definition of disability.
And ultimately we won. But this is not what we

(27:02):
should have been doing. We're taking a quick break. Stay
with us, you know, Terry, you raise so many ways
in which we failed to adequately think of or include women.

(27:25):
Can you just talk a little bit about where we
may be particularly still failing to include certain groups of women.
I think, first of all, I always like to say
that in the HIV context, it was kind of women
of color, incarcerated women of color who were the leaders
in all of this, who were putting these issues on

(27:46):
the map, saying whoa HIV looks differently in me? And
then it was many of my clients who were also like,
when I don't get Medicaid and social Security disability, I
can't pay my rent and that means social vices wants
to remove my child. So, of course this was early HIV,
so everything was very extreme, but we were often in

(28:08):
court trying to preserve the right of the mother to
see the child as she was dying because of this
cascading set of events which kind of began with a
physician not seeing that she could in fact have HIV
and then a government entity saying she doesn't qualify, she

(28:28):
doesn't have AIDS. I think what I saw as a
legal services attorney in eighty nine doing HIV was a
whole set of separate issues for women of color, for
LGBT women. We had to relitigate every single issue to
to just get access. I was on the Task Force
on Age Drug Development in and one way that you

(28:50):
can stop a trial if it gets too toxic or
people start to get sick, as you can issue something
called the clinical hold. So we played around with the
regulations so that a clinical hold should be issued if
women of child very potential are excluded from any trial
that is to test life saving drug. As you well know,

(29:12):
in the COVID trials, we've tried to be very transparent
about the number of people of color that were in
the trials, the number of women. So I think we
have made some progress. But as you also know, this
question of who's keeping data by race, who's really capturing
the data on l g B, t q I, it's

(29:34):
such a huge area. But I think certainly now black
lives matter, all of this has really raised, hopefully raised
the heat on the need to really make sure that
people who will be taking the vaccines, taking the drugs
are in the trial. But I think we have a
long way to go. When you when you think about

(29:55):
we have all kinds of data that shows us women
die faster of heart disease. All of this has to
be unpacked around who was studied, are the medications adequate?
There needs to be so much more money actually spent
on kind of hormonal impacts on women throughout their life course.

(30:16):
That's just it's just like nobody can tell you anything
at this point. And what do you think the then
appropriate role for the f d A, just for government
regulation holistically is here. I do think that the f
d A is a good place to do advocacy around this,
for sure. And it's interesting because this was so much

(30:39):
of my early work because people women were just coming
in the door and it was just insane. You're not
going to let her into this trial because she has
to have This was another popular one, detectable birth control.
And I remember I had a client who had cervical cancer.
She was like literally dying, and she was like, why

(31:00):
do I have to have detectable birth control? So there's
still this stuff going on also with private trials where
if they're letting women in, there're sometimes requiring birth detectable
birth control, etcetera, etcetera. It's fine if there's a scientific
reason for that, if we know that a particular drug
would harm you were you to be pregnant, it continues

(31:22):
without any evidence. And I also think because doctors don't
know when women come in and say I started taking
this drug and my menstruation should stop completely or it increased.
Doctors can't tell them the answer because they don't know
unless it's something like somebody dies of the treatment. There's

(31:43):
a tendency to just think these other things that women
are complaining about are not that serious. One of the
things that kept happening before we were able to change
the AIDS definition and get the Social Security Administration to
use a broader definition to figure out disability. And too,
for anyone listening who would maybe want to do something

(32:05):
about this, what advice would you have for someone for
whom this would be personal, or for someone for whom
this just feels so wrong and inequitous, especially now like here.
One thing is being super aggressive about advocating for yourself
and getting as much information as you can, including if

(32:27):
it's a particular drug that's being tested. Try to find
out on your own what we know about this drug.
I can actually find stuff fairly easily, and really don't
be afraid to question what you're being told. I think
I think some really great campaign ideas are are thinking
about thinking about some of the drugs that women you

(32:49):
commonly use that had no women in the trials and
things as simple as like medicine for high blood pressure? Right,
how much do we really about about some of the
side effects of that by gender? But I think we
could pick any treatment. I would be very surprised if

(33:10):
I learned that most of the even though over the
counter drugs, had women and girls in the trials. But
I think really starting to highlight some of the side
effects that nobody can tell us about. Maybe you're taking
a migraine medication and you might have some side effects
that have to do with all of these hormones that

(33:32):
men don't have or have different ones, right, I think
really beginning to treat ourselves and our bodies and the
symptoms we have as serious and raising some of these
questions would really help a lot. What advice would you
have for someone who wanted to try to make the
real structural shifts? And I think probably you and I

(33:53):
believe still need to happen to ensure that women, in
a real diversity of women are included in not only
drug and therapeutic trials, but also in the testing of
toxic chemicals or for any and everything that might impact us.
I feel like doing the work and actually letting pete.

(34:13):
Women who are having symptoms, who are need these treatments,
who don't know why they're having a certain symptom because
the drug wasn't tested on women. That's who we need
leading these campaigns talking about their experiences. This is the
catch twenty two. We're taught to feel ashamed of the
things that happened to us. And there was something about

(34:34):
talking to the clients and explaining that this is a
discriminatory law that has put you in this situation. It's
not because you're bad, it's not because you once had sex,
it's not because women aren't supposed to get HIV. These
are the things that that women often feel like I
can't talk about what's happening to me because it'll make

(34:56):
me seem a certain way. In fact, we all need
to start owning and demanding that what happens to our
body is actually a hugely important policy issue, that it's
not okay anymore ever to just test drugs on a
certain segment of affected populations and use them for everybody.

(35:18):
But I think that has to be led by, as
it was in the context of HIV, by women who
are living the absurdity and of this discrimination but I
also think it's a great fight because, like I said,
when you look behind the curtain, there's nothing there. Well, Terry,

(35:39):
thank you for being in the fight and for leading
the fight for women everywhere, and thank you for your
time today. Terry is on Twitter at Terry m McGovern
that's t E r r Y M M c g
O b e r N. And you can visit the
Department of Population and Family Health and Global Justice and

(36:00):
Governance program pages at public Health dot Columbia dot edu.
You might know my mom, Hillary Clinton as a presidential candidate,
Secretary of State, and U S. Senator. The one thing
you might not know is that she worked hard to
change laws and regulations so that we'd have better guidelines
around the right dosage of medicine for kids. I was

(36:23):
so excited to have the chance to talk with her
about this and her lifelong efforts to include children and
our public health and policymaking. Hi, Mom, thank you for
doing this. Oh I am happy to do this, Chelsea.
I know because I'm your daughter and i've watched you
over a few decades now that you've always been focused

(36:43):
on trying to ensure that kids are included, are given
kind of equal rights, equal dignity, and and not forgotten.
And so I guess I just want to start with,
when did you realize that kids were being left out?
Left out of insurance, left out of kind of new

(37:06):
drug and therapy trials. When did you realize that kids
were largely just absent? Well, I think I had some
idea about the inequity and healthcare, going back to my
time at the Yale Child Study Center and then working
for the Children's Defense Funds. So I was aware that

(37:28):
children were often unable to access or easily get or
afford the kind of care that I thought they should have,
But I didn't really focus on that or immerse myself
in what it meant until I was working first in
Arkansas on behalf of your dad's governorship, when we were

(37:53):
looking at how to expand healthcare to more people in Arkansas,
and I realized the paucity of pediatricians, the paucity of O.
B G. Y N practitioners, the total lack of midwives
in many parts of Arkansas, particularly Eastern Arkansas, which was
predominantly black and in most places quite poor. So I

(38:18):
moved from knowing that kids and their families had problems
accessing and affording care, to seeing how the medical system
itself wasn't really providing the opportunity even if you had
resources in many geographic areas to get healthcare. And I
took on the mission of building up and improving the

(38:40):
Arkansas Children's Hospital because it was a tertiary care facility,
but it treated everybody and it was able to take
care of kids even if they had to be you know,
driven or helicoptered some distance. So I was aware of
all of that from my advocacy work and my work

(39:01):
in Arkansas, and then when I began working on health
care reform in ninety three after Bill became president, I
really saw how desperate the care was. And I'll just
end with one story because it was so indicative and
chilling to me. I was in Cleveland at the Children's hospital.

(39:22):
They're doing a kind of a listening session with parents
of kids with pre existing conditions, and I was talking
to a group of parents and I'll never forget a
father saying to me that he said, look, I own
my own company, I do very well financially, but I
cannot ensure my two daughters who have cerebral palsy. And

(39:46):
I can't find insurance at any cost, he said. I'll
tell you the last time I was talking to an
insurance agent, I said, look, I can afford to pay
for a good policy, and the guy looked at me
and he said, you don't understand. We don't ensure burning houses.
So even well off people, people who could travel, people

(40:06):
who were able to they thought afford care for children
with previousting conditions, even they were shut out of our systems.
So my understanding and awareness of the inequities, particularly with
regard to children grew over time. While we're talking, Feiser
and Maderna are studying their COVID nineteen vaccines in younger kids,

(40:31):
and certainly, as a parent of three kids, I'm very
hopeful that they will be able to gather the necessary
evidence over the next few months around what doses are
effective and safe to help protect kids from COVID nineteen.
And yet the majority of medicines that are on the

(40:55):
market and available today actually weren't weren't tested in kids.
In fact, like for most of American history, there weren't
even very real or meaningful FDA regulations on prescribing kind
of correct head dosages of medications to kids. So, since
I know this is an issue that you worked hard

(41:15):
to try to help remedy, when did you first become
aware that there was more kind of guesswork than actual,
like rigorous science in the dosing of medicines too kids
And how did you try to change that? I think
I first really became aware of it through my friend

(41:37):
Elizabeth Glazer, who was the advocate for pediatric HIV age treatment.
Because for those who don't know the story, Elizabeth, she
contracted HIV through a blood transfusion and she passed it
on through breast milk first to her daughter than to
her son, and when she got diagnosed post and then

(42:00):
the kids were found to be HIV positive, She's the
one who really discovered in a very dramatic way that
people were just guessing at what kind of dosage of
what kind of drugs could be given to children who
had contracted HIV, And she started an organization to really

(42:22):
raise that awareness, and she she brought her concerns to
me in the ninety two campaign. You know, although her
immediate and urgent request was to figure out how best
to test and then treat kids with HIV, she had
uncovered this much bigger problem that we were testing hardly

(42:43):
anything on children, and so she became an eloquent, determined advocate,
and in nineteen I think goes back to Congress tried
to incentivize pharma to start testing and try to figure
out accurate doses of medicine for kids, and in two

(43:05):
thousand two, the Best Pharmaceuticals for Children Act was passed,
but with an expiration date of two thousand seven. And
then when two thousand seven rolled around, I introduced legislation
called the Pediatric Research Equity Act because what we kept
saying is that children are not just little adults. I mean,

(43:26):
you don't say, okay, the average adult who weighs like
a d two hundred pounds, here's the dose for them.
So okay, so the kid weighs thirty pounds, so let's
just cut it that. No, that is not that is
not appropriate science. That doesn't make any sense. You had
to do specific testing so that pediatricians had more confidence
about what were the appropriate doses. And this has been,

(43:51):
you know, a very long long struggle. We have made
a lot of progress. I would argue, we're still not
where we need to be in making sure that kids
are included. But the same was true for women, Chelsea.
I mean, it wasn't literally until the nineteen eighties that
it became clear that the n i H, the premier
research institute on health in our country, often was not

(44:16):
testing drugs on women. And my former colleague and good friend,
Barbara mccowski, the former senator from Maryland, she just led
a huge effort to try to require our own government
to test drugs for literally breast cancer on women and
not just on men, because we still have a lot

(44:36):
of drugs that we're guessing at when it comes to
what the appropriate dosage for kids should be. Mom, I
am curious, now, why did that take so long? Like
what was the resistance at the time. Was it just
kind of a disinteresting kids? Was it not a sufficient
understanding that kids aren't actually many adults? Why didn't take

(45:01):
so long? And what did you still have to push
through to even achieve what you and others, thankfully we're
able to achieve, and that obviously President Bush signed and
helped move us forward. Well, I think you have to
go way way back. I think the model for medicine
has been a white man that has been the centerpiece

(45:21):
of medical discovery, experimentation, modeling, you know, for centuries, and
it was first thought that you couldn't really have a
reliable testing on women because women got pregnant and women
had periods, and women's hormones were different. And literally that

(45:41):
was the response when people like Barbara mccolski started saying,
how can you be researching breast cancer and you have
no women in your clinical research pool? And there were
all kinds of excuses, some of them frankly rooted in blindness,
I would say, more than indifference. It was just a
kind of this is the way we've always done it.

(46:04):
We then don't have to take into account these variables.
Were trying to figure out something that's complicated enough, so
the first effort had to be to get women included
in clinical trials for all kinds of treatments. So then
slowly in the nineties it became obvious like if women
had been left out, what about kids, because you know,

(46:27):
doctors were prescribing lots of medicine for children. I was
looking up something that I had seen back in the
day when your dad ordered the beginning effort to try
to test more drugs and figure out proper doses. That
this was back in in and at the Clinton administration's direction,

(46:49):
the f d A compiled the list of the ten
most widely prescribed drugs for children but not tested on them.
And these drugs had been prescribed five million times in
one year for children in age groups for which the
labels carried a disclaimer or lacked adequate information on usage.
For example, a drug we all know a lot about

(47:12):
called riddling, it was prescribed in one year and twenty
six thousand times to children under six am Picillan injections
for treatment of infection prescribed six hundred thousand times to
patients under sixteen. Prozac prescribed three nine thousand times to
patients under sixteen. Now, I could go on and on,

(47:32):
but it's not like doctors weren't prescribing these drugs for kids,
because they were, but they've never been tested on kids. Then,
you know, we began slowly to try to get the
government to require the pharmaceutical industry to do this. And
at the announcement of this there was a White House

(47:54):
ceremony back in I talked about my friend Elizabeth Glazer
and what she had gone through. She eventually died from AIDS,
as did her daughter Ariel. They hadn't prescribed a z
T even though Elizabeth was taking it for her HIV AIDS.
The doctor told Elizabeth they couldn't prescribe a z T

(48:16):
for her daughter because they didn't know what dosage to
give children. So this had like real world effects on
specific kids. I'm curious, given that you've spent so much
of your career and even your life focused on trying
to help protect and promote the rights of children, are
there other areas in public health broadly where you don't

(48:39):
think we've paid enough attention to kids. Well, I think
still it's the case that poor children, children of color,
children in isolated geographic areas, you know, they're just not
having the opportunity to access quality, affordable health care in
an orderly predictable way that they should. When you have

(49:02):
the chance to expand Medicaid and states like Texas refusing
to do so, you get predictable results. You have not
only a huge uninsured population, but a sicker population, and
you have, for example, maternal mortality rates that are third world.
If people cannot actually get to care, if they cannot

(49:26):
afford care, it's not just the adults who suffer, it's
also their kids and We used to have school nurses
many many, many places. No longer do we used to have.
You know, hundred years ago, when I was in elementary school,
we used to have eye exams in the school, and
so a family that couldn't necessarily afford to take their

(49:48):
child to get an eye exam would find out that
their child needed glasses. There were informal as well as
formal programs that tried to fill gaps, and you know,
now we just have a lot of gaps. The inequity
that stalks our health care system is particularly egregious when
it comes to kids because a lot of conditions, a

(50:10):
lot of not just physical but mental health problems could
be addressed earlier, but there's just not the ability of
a family or even the access to such care that
would be required. Well, then it certainly sounds like that's
exactly the role then, that we would hope that schools
would play. I certainly believe that as we think about

(50:34):
how best to help kids catch up on all the
well child visits that unfortunately have been missed over the
last almost a year and a half of COVID, that
we should really return to thinking about schools as being
an important part of helping to protect and promote kids
health and also are shared public health. Yeah, you know,
when you were talking, I was thinking about how when

(50:55):
I was first Lady of Arkansas, I continued the work
started a prior first Lady Betty Bumpers, whose husband Dale Bumpers,
had been governor to governorships before Bill, and she had
been a real leader in vaccination efforts. And we continued
that work and we finally with the children's vaccines primarily measles,

(51:19):
what's at measles, mumps and rebella rebella MMR, we finally
reached that point. Now the gains that we had made
with vaccination are under attack by all the various self
interested and misguided anti vax or forces, and we're going backwards.

(51:41):
So the work is never done. I mean, there's always
some additional challenge. But I have to confess I didn't
think making the case for life saving, injury saving, distress
saving childhood vaccinations would be something we'd have to keep
argueing for. I remember when I was first Lady, and

(52:02):
I think you know, I mean, you were with me.
We were in Zimbabwe and I went to visit a
health clinic and the doctors and the nurses there were
telling me that one of their biggest problems was an
outbreak and a resumption of measles and the particular strain
at that point in the nineties and Zimbabwe was blinding kids.
So they were seeing an increase in blind children. And

(52:26):
I remember thinking, so terrible, we have to help them,
but I'm so relieved that we we have vaccinated our kids. Well,
you know, my parents were thrilled when vaccines came along,
particularly the polio vaccine, which was something that everybody was
terrified about when it came to polio. I remember Grandma,
my grandma, your mom talking about how like one of

(52:48):
the greatest days of her life was when she could
get you vaccine against polio. Yeah, and we did it
in the school and you'll have to wait in line
and it was a long wait, but it was worth it. Well,
Mom on that not cheery, but hopefully just kind of
we all need to recommit to the work. Note we

(53:11):
do get vaccinated, Yes, yes, get vaccinated. Thank you Mom
for your time today. As ever, well, thank you Chelsea
for your podcast, which I have really enjoyed listening to.
And you know, we're in a battle to try to
reassert the primacy of facts, evidence and truth. So thank
you for being on the front lines of that. You

(53:34):
can keep up with my mom on her podcast, You
and me both as we heard today, we still have
our work cut out for us when it comes to
making sure that every aspect of our public health system
is inclusive and responsive to the needs of different populations
in different people. That means ensuring that new drugs and

(53:55):
treatments aren't tested solely on adult white men, building a
verse healthcare workforce, and making sure that healthcare is affordable
and accessible for everyone. Talking with people who've been working
on these issues for a long time always leaves me
feeling inspired and energized, and I certainly hope that you
feel the same way. Thanks for listening. We'll be back

(54:16):
next week. In Fact is brought to you by I
Heart Radio. We're produced by Erica Goodmanson, Lauren Peterson, Cathy Russo,
Julie Subrian, and Justin Wright, with help from the Hidden
Light team of Barry Lurry, Sarah Horowitz, Nikki Huggett, Emily
Young and Humanity, with additional support from Lindsay Hoffman. Original

(54:37):
music is by Justin Wright. If you liked this episode
of in fact, please make sure to subscribe so you
never miss an episode, and tell your family and friends
to do the same. If you really want to help
us out, leave us a review on Apple Podcasts. Thanks
again for listening, and see you next week.
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