0:00

Hi,

0:07

I'm Chelsea Clinton, and this is in fact

0:10

a podcast about why public health matters

0:12

even when we're not in a pandemic.

0:15

Today, we're talking about what it takes to build a public

0:17

health system that actually reflects and

0:19

includes well the public.

0:22

For a long time, research on new drugs and therapies,

0:24

the training healthcare providers received, and

0:27

even our public policy we're all designed

0:29

with only adult white men in mind.

0:32

And while we've made important changes over the

0:34

years, we still have a long way to go when

0:36

it comes to making healthcare and all it

0:38

includes more inclusive. Later

0:41

I'll be speaking with Terry McGovern, a lawyer

0:43

and public health expert who saw the harm caused

0:45

by excluding women from clinical trials

0:47

for potentially life saving HIV AIDS

0:50

drugs early on in her career. I'll

0:52

also be speaking with my mom, Hillary Clinton,

0:54

about her work to make sure that kids are recognized

0:57

as a distinct population with distinct

0:59

medical needs and not treated

1:01

like many adults by public health research and policymaking.

1:04

But first, I'm talking with doctor

1:07

Valerie Montgomery Rice. Doctor

1:10

Montgomery Rice is the president and dean

1:13

of more Health School of Medicine, historically

1:15

black medical school in Atlanta. With a

1:17

long commitment to health equity and excellence.

1:20

Dr Montgomery Rice is a renowned infertility

1:22

specialist in researcher. Before coming

1:24

to more House, she was the founding director

1:27

of the Center for Women's Health Research at Maharry

1:29

Medical College, one of the nation's first

1:31

research centers devoted to studying diseases

1:34

that disproportionately impact women of color.

1:37

I began our conversation by asking her

1:39

what first inspired her to go into medicine.

1:43

So, Chelsea, thank you so much for having

1:46

me. I will tell you my story is a

1:48

little bit different that I

1:50

didn't grow up always wanted to be a doctor.

1:53

In fact, I decided I was going

1:55

to be a doctor because I didn't want to man

1:57

engineer. But I was raised

1:59

by very strong mother. My

2:02

mother left my father when I was

2:04

six years old, and so we were pretty

2:06

much raised by my mother, and our life

2:08

really changed. My mother finally got

2:10

a job at the paper factory Georgia

2:12

Craft in Macon, and she rose

2:14

to be the highest ranking woman in

2:17

the paper factory, driving a big

2:19

truck ore forklift sort

2:21

of type of machinery that dealt

2:24

with the paper. She worked there for twenty

2:26

five years and what she

2:28

wanted for her daughters was something different,

2:30

and so she always talked to us

2:32

about education being

2:35

the pathway out. And

2:37

so I went to Southwest

2:39

High School, which in nineteen seventy nine

2:42

was the largest high school in the nation. My

2:44

graduating class was a thousand, forty

2:47

nine students and I

2:49

was the only black student in the honors

2:51

program. And my science teacher, MSUs

2:54

Newbel said to me one day, you're

2:56

good in math and science, and

3:00

they are wanting more black kids

3:02

to become engineers, so you should go to Georgia

3:04

Tech. And that was pretty much the counseling

3:07

that I had. So I went to Georgia

3:09

Tech major and chemical engineering. Long

3:12

story short, I was co oping with procting

3:14

gambling. They offered me a job. I

3:17

essentially was doing kinetics

3:19

of detergent sentences. I'm sure I was working

3:21

on tide. And one

3:24

day in the plant, I was doing temperature

3:26

readings and I had just brought

3:28

this new outfit Chelsea, and

3:30

I had to put on the bunny suit, and I had

3:32

to put the both of cap on, and I had

3:34

to put on rubber boots, not like the stylish

3:37

ones that we have now, and I had to do

3:39

these temperature readings, and I was wiping

3:41

the fog off of my glasses so

3:43

that I could do this temperature reading, and I saw

3:45

a reflection on myself and I said, you know what,

3:48

I'm way too cute for this. I

3:50

need to do something else. But it was

3:53

an awakening moment for me that

3:55

I really didn't want to be an engineer. So I

3:57

went to the encyclopedia and I looked

3:59

up mad science and people, and

4:01

one of the things that pops up was medicine.

4:04

And I decided to go to medical school. So

4:06

I went over to Spellman College, because

4:09

a Georgia tech, there were no premier majors

4:11

at that time. And I talked to the advisor

4:13

there and the woman said to me, you don't seem

4:15

to know a lot about going to medical school.

4:17

And I said, I didn't know a lot about being an engineer,

4:20

and that's working out okay. And she helped

4:22

me to get into a premier summer

4:24

program at Harvard Medical School. And

4:27

then I applied to Harvard Medical School

4:29

and got in, and sort of the rest

4:31

is history. But it was really about

4:34

not wanting to be an engineer and

4:36

then loving math and science and having

4:39

courage that I learned from my mother to

4:41

think that I could do this. It's just extraordinary

4:44

that you had never thought about going to medical

4:46

school until you were almost kind of at the end

4:48

of your college career, and now you

4:50

lead a medical school exactly

4:54

no plans for that either. But you know,

4:56

I loved academic medicine. I

4:58

really did love teaching.

5:00

I loved research, and I loved clinical

5:03

care, and academic medicine allowed for that.

5:05

And then I started to recognize, probably

5:08

as I became an associate

5:10

professor, I got my tenure as as an

5:12

associate professor at the University of Kansas,

5:15

I really started to understand how

5:17

you could have impact on who was

5:19

educated and trained. And I started

5:21

more of an administrative focus of understanding

5:25

what influence really means, and it to

5:27

me, is about how the decisions you

5:29

make impact of the people lives.

5:32

So you were able to find a path to becoming

5:34

a doctor, even though no one ever

5:36

presented that as a possibility to you.

5:38

What can and must we do to

5:40

help other young people from underrepresented

5:43

groups go into medicine. We

5:45

have to create a pathway

5:47

that students can first of all, see themselves

5:50

in the role. And Chelsea, I really

5:52

believe that that starts in K

5:54

through five. So that you

5:56

know the fact that More High School of Medicine. We adopted

5:59

a school truskevia Airmand Global Academy.

6:02

It's about three or five miles from the school.

6:06

The kids on free lunch programs.

6:09

There's some economic challenges in

6:11

the community, but we adopted

6:13

that school so that we could do nothing

6:15

else but go there and wear our

6:17

white coats and have those students

6:20

to see themselves in us.

6:23

Now we've done a lot more. We partner with

6:25

the school. We've increased reading proficiency,

6:27

increase math proficiency. We train

6:30

our employees to be mentors, where about

6:32

a hundred and twenty five hundred and fifty

6:34

mentors who go there every week to

6:36

that school. And it's all about

6:39

the students seeing the possibility

6:41

and increasing their

6:44

capacity to be competent

6:46

in the sciences, which is required

6:48

for any type of health career. So

6:51

I believe that what we do

6:53

in that K through five really doesn't

6:56

matter. Do you have more people

6:58

now applying to the More School of Medicine

7:01

significantly so so this

7:03

year we got eighty three hundred

7:06

close eight four hundred applications.

7:08

We saw the same thing with our p a

7:10

program significant number more

7:13

double the number of applications.

7:16

I think the pandemic has

7:18

led young people to think about

7:20

how they can contribute with

7:23

medicine but also in service.

7:26

One of the great things that has happened with

7:28

this pandemic is that people see their

7:30

ability to give more

7:33

through their profession. And so, yes, we

7:35

definitely have seen an increase in the number of applications.

7:38

Well, that's incredibly encouraging. So

7:41

what do you say to people who don't

7:43

think it's that important to really focus on increasing

7:45

the number of black doctors and

7:47

healthcare workers or Latin

7:49

X doctors and healthcare workers.

7:52

I'm a scientist and I make a lot of decisions

7:54

by data. The data clearly shows,

7:57

Chelsea that when you have

8:00

culturally competent providers,

8:02

and most of the time the cultural competence

8:05

is aligned with either gender

8:08

or race or some type of cultural

8:11

identity. That means that that provider

8:13

and that patient are aligned

8:16

in some way, and therefore you see

8:18

a higher rate of compliance. And

8:20

so I just gave my Alma mater

8:23

commencement speech, and I was really

8:25

proud to do that. I was

8:27

also very proud to tell them

8:29

stories of what

8:32

happened to me early on at

8:34

Harvard Medical School, a person coming

8:36

from the South and actually

8:38

being challenged in some ways

8:41

by the environment that I was in as

8:44

a black woman, one of only ten black

8:46

students in the class,

8:49

and what that felt like and

8:51

how that limited some

8:53

of my engagement because

8:56

I didn't feel that connection. So

8:58

imagine that with a patient and a

9:00

provider when they can feel that

9:02

connection and that patient is

9:04

able to actually be

9:07

freer to answer the questions,

9:09

to tell some of the social

9:12

factors that may influence

9:14

their ability to be able to get

9:16

their medication, or to adhere

9:19

to the exercise regiment, or

9:21

even get to the doctor. And so

9:23

it is really really important that

9:26

we have not just racial

9:28

and gender alignment, but

9:30

also cognitive diversity.

9:33

What do I mean by that people's lived

9:35

experiences, how they bring

9:38

that into the room with the

9:40

patient to have solved for some of the

9:42

complex problems. How do you help

9:45

teach that at more House? And how do you think

9:47

that aspect of medical education has

9:50

really shifted from when you were

9:52

at Harvard decades ago? I

9:54

heard you say decades ago. I heard you say that I

9:57

was like a while ago, and I was like,

9:59

trying to not be too specific,

10:02

and then I just kind of s all right, Dr

10:04

My coming less. It was decades

10:06

ago. And and Chelsea, my daughter

10:09

just graduated from Harvard Medical School last

10:11

year in twenties, so it was decades

10:14

ago. And we are proud of the fact.

10:16

But it's unfortunate that we are only the

10:18

third black mother

10:20

daughter cohort to I would graduate

10:23

from Harvard Medicals. So that tells you we have a

10:25

long way to go, right. So here's one

10:27

of the things that we do. It more high school in medicine.

10:29

And I just before getting on this podcast

10:32

with you, we just did our orientation

10:34

and welcome our largest class

10:37

of p A students who are forty students

10:39

in number. And Chelsea, there are only

10:41

three black men in that class.

10:45

Because you know, we have a positive of

10:47

African American men going to medical school

10:49

or the p A school. Not only are you

10:52

dealing with them understanding

10:54

how they're going to relate to the community and

10:56

their patients, you also are dealing with them

10:58

understanding how they going to relate to themselves

11:01

and each other. We have a holistic admissions

11:03

process where we try to select

11:05

students not just based on

11:08

their academic credentials, but

11:10

their life experiences so they

11:12

may not be the student with the highest g p

11:14

A or the highest m CAT or g r A score

11:17

to get into p A school. It will be

11:19

an academic failed curve

11:22

because we want students who have different

11:24

life experiences, because we

11:26

know that if we combine that with

11:29

our educational pedagogical

11:31

experience and then

11:34

what we do in the community. So let's take the

11:36

p A in the m D program. Within

11:38

the next two or three weeks of starting

11:40

school, they will all do a longitudinal

11:43

community course for the entire

11:45

first year. They will be

11:47

broken up into groups of six or so

11:50

and they will go out to a certain

11:52

part of the community and they will

11:54

actually do a needs

11:57

assessment in partnership

11:59

with them Unity. They will select

12:01

their project and they will do

12:03

that for the entire year and

12:06

report on it as a part of their grade.

12:09

And all of our students participate

12:12

in what we call our Hell Clinic

12:15

Health Equity for All Lives Clinic,

12:17

which is our student run community

12:20

based clinics that we do in mobile vans

12:23

and in different parts of the community

12:25

where they serve at every point

12:27

from being a social worker to the

12:29

patient navigator to being the PSR

12:32

person that checks the person in and

12:34

then providing care under

12:36

the supervision of our faculty.

12:39

We believe that those experiences

12:42

are what jails for those

12:44

learners. How important it

12:47

is to be culturally competent

12:49

and culturally responsive. I

12:52

will tell you we still have sixty

12:54

five to seventy of our students who

12:56

choose to practice and underserved communities,

12:59

whether they're urban or rule, and

13:01

sixty five seventy of them

13:04

who choose to go into primary care or

13:06

critical core specialties like e er

13:09

our surgery and underserved communities.

13:12

That's a set of remarkable statistics.

13:14

And I know that you've spoken about

13:16

and written about the need to ensure

13:18

that black people and women are included

13:21

in public health research and clinical

13:23

studies. Why do you think we're not where

13:25

we really need to be in terms of

13:28

real representation and health research and

13:30

clinical trials, and what do you think would

13:32

help us get to where we should

13:35

be. Early on in my career,

13:37

I started the centerful Women's Health

13:40

Research and my Here Medical College, which

13:42

was the first center that looked

13:44

at diseases that dispapportion to impact

13:47

the women of color. So I was a reproductive

13:49

integronoledgist running an IVF

13:52

center at the university of Kansas doing

13:54

all of this work and trying to increase

13:57

women opportunities to achieve pregnancy.

13:59

And i's are a great divide. I saw

14:01

black women who were coming in

14:04

who were having less opportunities

14:06

to access IVF. I saw

14:09

a Black women who had more

14:11

fibroid disease, more endometriosis

14:14

that was going untreated to the

14:16

point that it was impacting their ability

14:18

to achieve pregnancy. So when I went

14:20

down to Mahara Medical College

14:22

to be the chair of O. B. G y N and

14:25

took some of my research with me, I

14:27

decided, you know, I applied for

14:30

ni H grant and got a ten million dollar grant

14:32

to start the Center for Women's Health Research. And

14:35

it was focused particularly on

14:37

Black women, looking at diseases

14:39

that disproportionate impacted their chances to

14:41

achieve pregnancy. And then

14:43

we started to advance that to looking

14:45

at breast cancer and all

14:47

types of other disparities. Right, But

14:50

it was the first one, okay, and that was in

14:52

the early two thousands, but it made a difference

14:54

because it raised awareness.

14:57

Now, I will tell you with this COVID and team

15:00

vaccine, we knew we had to dispel

15:03

these myths that people had

15:05

around the virus. We

15:08

had to deal with the mistrust and the distrust

15:11

that was permeating. Of

15:13

course, our community well

15:15

founded because of Tuskegee

15:17

and because of the Mississippi apidectims

15:20

stories. Because of here, we had a lacks

15:22

and we dealt with that. We would have thirty

15:24

thousand people on these town hall meetings.

15:27

We then started to focus

15:29

on the fact that we're gonna need to

15:31

have blacks in these clinical trial

15:33

blacks and latinates and these clinical trials

15:36

because we were disproportionate impacted

15:38

by these viruses. So we made sure

15:41

that we were on the n H panels, the

15:43

FDA panels, that each of

15:45

our institutions would

15:47

become clinical trial sites. Again

15:51

saying to our communities, we

15:53

are in the rooms where it's happening.

15:56

We are part of the decision process,

15:59

and so I give you that to say it

16:01

is important that you have people

16:05

engage in the room

16:07

whether decisions are being made, so

16:09

that people will not be left

16:11

out and left out. And

16:14

that's what we've tried to do. And I

16:16

think the COVID nineteen virus

16:18

pandemic has given us a pathway

16:21

to see some of our errors in the

16:23

past and so that we can

16:26

create some changes that

16:28

will be sustainable as we

16:30

continue to venture on in

16:32

the future to eliminate health disparities.

16:38

We'll be right back to stay with us. Dr

16:52

marcoy Rays, I've found it quite painful,

16:54

and if I found it painful, I can't even

16:56

imagine how you have found it over the

16:58

last year and a half of

17:01

our COVID crisis, where often

17:03

the media narratives are like

17:05

all these health disparities have been revealed,

17:08

and I keep thinking like you just weren't

17:10

paying attention, or

17:12

like, wow, we have a real disparity

17:14

in COVID nineteen. I'm like or COVID

17:17

nineteen bread upon the already pre existing

17:19

disparities that somehow we were just comfortable

17:22

slash complacent in accepting

17:24

for generations. And

17:26

so I do hope that there

17:30

will be a shift in research

17:32

dollars invested and in respect

17:34

given. I agree with

17:36

you, and what I

17:39

focus on every day is what's

17:41

possible. And so I look at

17:44

this pandemic and embrace

17:46

the fact. As my daughter would say, that some people

17:49

are now woke. Okay,

17:51

and they woke in the sense that they

17:54

actually didn't have a choice,

17:56

but the focus right because

17:58

all the other things that were usually

18:01

distracting you, you couldn't do them,

18:04

and so you paid more attention to the

18:06

media. You pay more attention to

18:09

the obvious facts that

18:11

this disease was disproportionate virus

18:13

and disapportioned impacting people of color, not

18:16

because they were black or Latin

18:18

X, because they were these central workers.

18:21

They were the one still out there picking up

18:23

your trash and delivering your

18:25

Amazon box, and they

18:27

couldn't work from home, and

18:29

so they were still in close contact

18:31

with people. So then maybe you started to say, well, maybe

18:33

there's an economic divide. Maybe

18:36

people don't have all the choices

18:38

that some of us have. And so we

18:42

have had the opportunity

18:45

now to see what disparities

18:47

look like in real time. And the

18:49

question is, Chelsea, what will we

18:51

do about it? And I am a person

18:53

who believes that allocation

18:56

of resources matter, and you

18:58

don't give everybody the same

19:00

thing. You're gonna achieve health equity.

19:03

You have to give more to a

19:05

group that's more disproportionately

19:08

impacted so that they can

19:10

achieve their optimal level of health.

19:13

That requires courage, that

19:15

requires bravery, that requires

19:17

acknowledgement of what

19:19

we have historically done, and

19:22

that we have made eras we

19:24

have been racists, we have been

19:27

biased, we have relied

19:30

on the history to dictate

19:32

our future, and now we have the

19:34

opportunity to change. How

19:37

do you either teach or help

19:39

your medical students tap into

19:41

their own empathy and

19:43

also resilience, and

19:46

especially given what you said about how

19:48

many of your more house

19:50

graduates become family medicine

19:52

physicians pediatricians, how

19:55

allow your future doctors

19:57

that you're training to be able

19:59

to you the work that you clearly are

20:02

such a leader in. The

20:04

best thing about being a health care

20:06

provider are the patients that you get

20:09

to provide health care too, And

20:11

that's where you're learning comes from. Yeah,

20:13

you can easily get lost in the sigenus

20:16

of medicine, but it is the art of

20:18

medicine, the art of caring

20:20

that allows you to become that

20:22

health care professional that the

20:24

world needs, but that patient

20:26

at the moment needs. And we teach

20:29

that not through Zoom. That's why we

20:31

had to go back as soon as we possibly

20:33

could, because we could only teach so much

20:36

through Zoom. But that real experience

20:38

comes from that hands on, that

20:41

engagement, that's hearing that story

20:44

and understanding what's

20:46

inside of you that allows

20:48

you to see that patient for who

20:50

they are and what they bring to the

20:52

table in their fullness, and then

20:55

you are able to provide the optimal

20:57

level of care so your life experiences,

21:00

Adam. We tell our students that all the time,

21:02

tell your story. Don't be ashamed

21:04

of your story. It took me a long time, Chelsea

21:07

to understand that my resilience

21:10

and grit came from the fact that I

21:12

was raised in a single parent household with

21:14

the mother who taught us that

21:17

we could do anything, and

21:19

having that has allowed me

21:21

to believe that anything is possible.

21:24

I wish you could be my doctor. You have

21:26

three kids, you don't need any infertility passions,

21:30

so that is true. But it's just I

21:33

wish we all were lucky enough. I wish we

21:35

all didn't have to be lucky to

21:37

have doctors like you, and that's

21:39

what we're trying to do, a more house school of medicine.

21:42

Well, Dr Montgomery Rice, thank you so much

21:44

for your time and today, I'm hugely

21:46

grateful it has been my pleasure.

21:48

Thank you. You

21:50

can follow Dr Montgomery Rice on Twitter. She's

21:53

at ms M Prez. That's

21:55

m S M p R. E s

21:58

and you can find more House School of Medicine on Facebook,

22:00

Twitter, LinkedIn, Instagram, and YouTube.

22:07

My next guest, Terry McGovern, has

22:09

been decades working at the intersection of public

22:12

health and social justice. In she

22:15

founded the HIV Law Project, where

22:17

she fought and one cases

22:19

to expand clinical research around HIV AIDS

22:22

and to change the definition of HIV

22:24

related disability status to include women

22:26

and other groups that have been excluded. Today,

22:30

she's a professor and chair of the

22:32

Department of Population and Family Health

22:34

and the director of the Program on Global

22:36

Health, Justice and Governance at Columbia University's

22:39

Mailman School of Public Health. She's

22:41

also a good friend and I was delighted

22:43

to speak with her for the podcast. Terry,

22:48

thank you so much for joining

22:50

me today. And we could start maybe

22:52

with just the basics. What are

22:54

clinical trials and how do they

22:57

at least a non pandemic times

22:59

normal to get conducted. Clinical

23:02

trials happen in every

23:04

context where we're trying

23:06

out a new drug or treatment.

23:08

It has been a long standing

23:11

issue who's in clinical trials?

23:13

So my early years were

23:15

spent as an HIV lawyer, and

23:18

I realized very quickly that there

23:20

hadn't been enough women in

23:22

clinical trials, so we didn't know anything

23:24

about gynecological disease in HIV.

23:27

So I would say over the years

23:29

there has been a hard fought acknowledgement

23:32

that clinical trials need to

23:34

be inhabited by the people who will

23:36

be taking the drugs. Just a

23:39

note on women and women

23:41

of childbearing potential have really

23:44

had a hard time being included in clinical

23:46

trials. This dates back to palidamide,

23:50

where women taking philidamide

23:53

had children who had all kinds of problems,

23:56

and instead of actually figuring

23:59

out a process by which we

24:01

could figure out if drugs could

24:03

be tested on women who were of childbearing

24:06

potential, the f d A published

24:09

a guideline in nineteen seventy seven

24:11

that said women of childbearing potential

24:13

should be excluded from the early phases

24:15

of clinical trials. How that showed

24:18

up to me in nine

24:20

as an HIV lawyer, was a

24:22

doctor calling me from Johns Hopkins

24:25

to say, I want to get

24:27

my patient, a woman who

24:29

is very sick, into a trial,

24:32

and they want to sterilize her before

24:34

they'll let her in. And so

24:37

we used that case, and we

24:39

had a bunch of other women, also desperate

24:41

to get into HIV trials who

24:44

were excluded, and we went after

24:46

that FDA guideline and got it rescinded.

24:50

Of the many

24:52

hundreds, even thousands of possible

24:55

medicines that are available through prescription

24:57

or over the counter, how many

25:00

of them actually do we

25:02

have a good sense of how they affect

25:04

women? Or is the answer like not

25:07

on most? The answer is

25:09

not on most. Something that really

25:11

jumped out at me and HIV work

25:14

was when the women would take the

25:16

treatments. They would come in saying I've

25:18

been bleeding for months or I stopped

25:20

bleeding, or you know, nobody

25:22

could tell them anything about the kind

25:25

of side effects on their menstruation,

25:27

etcetera. And I know this because I kept asking

25:29

the doctors is there something I could

25:31

tell these patients? Is it there?

25:34

And And because many of

25:36

the studies didn't have gynecologists,

25:38

right, it can be as simple as that. Going

25:40

back to HIV for a minute, when I

25:42

started to collect the medical records, because

25:45

people when they are denied

25:47

medicaid or disability, as a lawyer,

25:50

you get their medical records. I

25:52

kept seeing in the women who were being

25:54

denied disability that they

25:56

had all kinds of gynecological disease,

25:59

and there was nothing in the AIDS definition

26:01

that addressed gynecological disease. But

26:04

you had thirty clients. It was all over

26:06

their records and it became clear

26:08

that, of course these things weren't

26:10

picked up, both because there were men in their early

26:12

trials. And of course this was

26:14

devastating because that's why early

26:17

on we were identifying women when they were

26:19

so sick, because nobody was

26:21

picking up that they might be positive.

26:24

And that's the reason globally

26:26

women and girls are of HIV

26:28

numbers. But but it's profound,

26:31

all the levels, the failure to include

26:34

women, the failure to include

26:36

and look at gynecological symptoms.

26:39

It wasn't until we sued.

26:42

We did a class action in against

26:45

Health and Human Services, saying that

26:47

the AIDS definition which they used

26:50

to determine automatic eligibility

26:53

was based only on men and therefore it

26:55

wasn't an inadequate definition of disability.

26:58

And ultimately we won. But

27:01

this is not what we should have been doing. We're

27:07

taking a quick break. Stay with us,

27:19

you know, Terry, you raise so

27:21

many ways in which we failed to adequately

27:23

think of or include women. Can you just

27:26

talk a little bit about where we may

27:28

be particularly still failing

27:30

to include certain groups of women.

27:33

I think, first of all, I always like

27:35

to say that in the HIV context,

27:38

it was kind of women of color, incarcerated

27:40

women of color who were the leaders

27:42

in all of this, who were putting

27:45

these issues on the map, saying whoa

27:47

HIV looks differently in me? And

27:49

then it was many of my

27:52

clients who were also like, when

27:54

I don't get Medicaid and social Security

27:56

disability, I can't pay my rent and

27:59

that means social vices wants to remove

28:01

my child. So, of course this was early

28:03

HIV, so everything was very extreme,

28:05

but we were often in court

28:08

trying to preserve the right of the mother

28:11

to see the child as she was dying because

28:13

of this cascading set

28:16

of events which kind of began

28:18

with a physician not

28:20

seeing that she could in fact

28:23

have HIV and then a

28:25

government entity saying she doesn't

28:27

qualify, she doesn't have AIDS. I think

28:30

what I saw as a legal services

28:32

attorney in eighty nine doing HIV was

28:35

a whole set of separate issues

28:37

for women of color, for LGBT women.

28:40

We had to relitigate every single

28:42

issue to to just get

28:44

access. I was on the Task

28:46

Force on Age Drug Development in and

28:50

one way that you can stop a trial

28:52

if it gets too toxic or people

28:54

start to get sick, as you can issue

28:56

something called the clinical hold. So

28:59

we played around with the regulations so that

29:01

a clinical hold should be issued if

29:03

women of child very potential are excluded

29:06

from any trial that is

29:08

to test life saving drug.

29:11

As you well know, in the COVID

29:13

trials, we've tried to be very transparent

29:16

about the number of people of color that were

29:18

in the trials, the number of women. So I think

29:20

we have made some progress.

29:23

But as you also know, this

29:25

question of who's keeping data

29:28

by race, who's really capturing

29:31

the data on l g B, t q I, it's

29:34

such a huge area. But I

29:36

think certainly now black lives matter,

29:39

all of this has really raised,

29:41

hopefully raised the heat on

29:45

the need to really make sure that

29:47

people who will be taking the vaccines,

29:49

taking the drugs are in the trial. But I think we

29:51

have a long way to go. When you when

29:53

you think about we have all

29:55

kinds of data that shows us women die

29:58

faster of heart disease. All

30:00

of this has to be unpacked

30:02

around who was studied,

30:05

are the medications adequate?

30:07

There needs to be so much more

30:10

money actually spent on kind

30:12

of hormonal impacts on women

30:14

throughout their life course. That's just it's

30:17

just like nobody can tell

30:19

you anything at this point. And

30:21

what do you think the then appropriate

30:24

role for the f d A, just for government

30:26

regulation holistically is

30:29

here. I do think that the

30:31

f d A is a good place

30:33

to do advocacy around this, for sure.

30:36

And it's interesting because this

30:38

was so much of my early work

30:40

because people women were just coming

30:43

in the door and it was just

30:45

insane. You're not going to let her into

30:48

this trial because she has to have This was

30:50

another popular one, detectable

30:52

birth control. And I remember

30:54

I had a client who had cervical cancer.

30:56

She was like literally dying, and

30:59

she was like, why do I have to have detectable

31:01

birth control? So there's still this

31:03

stuff going on also with private

31:06

trials where if they're letting women

31:08

in, there're sometimes requiring

31:10

birth detectable birth control, etcetera,

31:13

etcetera. It's fine if there's a scientific

31:15

reason for that, if we know that a

31:17

particular drug would harm

31:19

you were you to be pregnant, it continues

31:22

without any evidence. And I also

31:24

think because doctors don't

31:26

know when women come in and say I

31:28

started taking this drug and my

31:31

menstruation should stop completely or

31:33

it increased. Doctors

31:36

can't tell them the answer because they

31:38

don't know unless it's something like

31:40

somebody dies of the treatment. There's

31:43

a tendency to just think these other

31:45

things that women are complaining about are

31:48

not that serious. One of the things

31:50

that kept happening before

31:53

we were able to change the AIDS definition

31:55

and get the Social Security Administration to

31:58

use a broader definition to

32:00

figure out disability. And

32:02

too, for anyone listening who would maybe want to

32:04

do something about this, what advice

32:07

would you have for someone

32:09

for whom this would be personal, or for

32:11

someone for whom this just feels so wrong

32:13

and inequitous, especially now like

32:15

here. One

32:18

thing is being super

32:20

aggressive about advocating for yourself

32:22

and getting as much information as

32:25

you can, including if

32:27

it's a particular drug that's being

32:29

tested. Try to find out on

32:31

your own what we know about

32:33

this drug. I can actually find stuff

32:36

fairly easily, and really

32:38

don't be afraid to question what

32:40

you're being told. I think I

32:43

think some really great campaign ideas

32:45

are are thinking about thinking

32:47

about some of the drugs that women you commonly

32:50

use that had no women

32:52

in the trials and things as simple

32:55

as like medicine for high

32:57

blood pressure? Right, how much

32:59

do we really about

33:01

about some of the side effects of that

33:04

by gender? But I think we could

33:06

pick any treatment. I would

33:08

be very surprised if

33:10

I learned that most of the even

33:12

though over the counter drugs, had women

33:15

and girls in the trials. But I think

33:17

really starting to highlight

33:20

some of the side effects

33:22

that nobody can tell us about.

33:25

Maybe you're taking a migraine medication

33:27

and you might have some side effects that

33:29

have to do with all of

33:31

these hormones that men don't have

33:33

or have different ones, right, I think

33:36

really beginning to treat ourselves

33:38

and our bodies and the symptoms we

33:40

have as serious and raising

33:43

some of these questions would really help a

33:45

lot. What advice would you have

33:47

for someone who wanted to try to

33:50

make the real structural shifts? And I think

33:52

probably you and I believe still need to happen

33:54

to ensure that women, in a real diversity

33:57

of women are included in not

33:59

only drug and therapeutic trials,

34:01

but also in the testing of toxic

34:04

chemicals or for any

34:06

and everything that might impact

34:09

us. I feel like doing

34:11

the work and actually letting pete.

34:13

Women who are having symptoms, who

34:15

are need these treatments, who don't

34:18

know why they're having a certain symptom

34:20

because the drug wasn't tested on women. That's

34:22

who we need leading these campaigns

34:24

talking about their experiences. This

34:27

is the catch twenty two. We're taught

34:29

to feel ashamed of the things

34:31

that happened to us. And there was something

34:33

about talking to the clients

34:35

and explaining that this is a

34:38

discriminatory law that

34:40

has put you in this situation. It's not

34:42

because you're bad, it's not because

34:44

you once had sex, it's not because

34:46

women aren't supposed to get HIV. These

34:49

are the things that that women often

34:51

feel like I can't talk about

34:53

what's happening to me because it'll

34:55

make me seem a certain way.

34:58

In fact, we all need to

35:00

start owning and demanding

35:03

that what happens to our body

35:05

is actually a hugely

35:08

important policy issue, that it's

35:10

not okay anymore ever to just

35:12

test drugs on a certain segment

35:15

of affected populations and use them

35:17

for everybody. But I think that has

35:20

to be led by, as

35:22

it was in the context of HIV, by

35:24

women who are living the absurdity

35:28

and of this discrimination

35:30

but I also think it's a great fight because,

35:33

like I said, when you look behind the

35:35

curtain, there's nothing there. Well,

35:39

Terry, thank you for being in the fight and

35:41

for leading the fight for women everywhere,

35:43

and thank you for your time today. Terry

35:48

is on Twitter at Terry m McGovern

35:51

that's t E r r Y M

35:53

M c g O b e r

35:55

N. And you can visit the Department of

35:58

Population and Family Health and Global

36:00

Justice and Governance program pages at

36:02

public Health dot Columbia dot

36:05

edu. You

36:09

might know my mom, Hillary Clinton as

36:11

a presidential candidate, Secretary of State, and U

36:13

S. Senator. The one thing you might not

36:15

know is that she worked hard to change

36:17

laws and regulations so that we'd have better

36:20

guidelines around the right dosage of medicine

36:22

for kids. I was so excited

36:24

to have the chance to talk with her about this and

36:26

her lifelong efforts to include children

36:28

and our public health and policymaking.

36:32

Hi, Mom, thank you for doing this. Oh

36:35

I am happy to do this, Chelsea. I

36:37

know because I'm your daughter and i've watched

36:40

you over a few decades now that

36:42

you've always been focused on trying

36:44

to ensure that kids are included,

36:48

are given kind of equal rights,

36:50

equal dignity, and

36:52

and not forgotten. And so I guess

36:55

I just want to start with, when did you realize

36:57

that kids were being left

37:00

out? Left out of insurance,

37:03

left out of kind

37:05

of new drug and therapy trials.

37:08

When did you realize that kids were largely

37:10

just absent? Well,

37:13

I think I had some idea

37:16

about the inequity and

37:19

healthcare, going back to my time

37:22

at the Yale Child Study Center

37:24

and then working for the Children's Defense Funds. So

37:26

I was aware that children

37:29

were often unable

37:31

to access or easily

37:33

get or afford the kind of care

37:36

that I thought they should have, But I

37:38

didn't really focus on

37:41

that or immerse myself

37:43

in what it meant until I

37:45

was working first in Arkansas

37:49

on behalf of your dad's

37:52

governorship, when we were looking at

37:54

how to expand healthcare to more

37:56

people in Arkansas, and I

37:58

realized the paucity of pediatricians,

38:01

the paucity of O. B G. Y N

38:04

practitioners, the total lack

38:06

of midwives in many

38:08

parts of Arkansas, particularly Eastern

38:11

Arkansas, which was predominantly

38:14

black and in most places

38:16

quite poor. So I

38:18

moved from knowing that kids

38:21

and their families had problems accessing

38:23

and affording care, to seeing how

38:26

the medical system itself

38:28

wasn't really providing the opportunity

38:31

even if you had resources

38:33

in many geographic areas to get

38:35

healthcare. And I took on the

38:38

mission of building up and improving

38:40

the Arkansas Children's Hospital because

38:42

it was a tertiary care facility,

38:45

but it treated everybody and it

38:47

was able to take care of kids

38:50

even if they had to be you

38:52

know, driven or helicoptered some

38:54

distance. So I was aware

38:56

of all of that from my advocacy

38:59

work and my work in Arkansas,

39:01

and then when I began working

39:04

on health care reform in ninety

39:06

three after Bill became president,

39:09

I really saw how desperate

39:12

the care was. And I'll just end with one story

39:15

because it was so indicative

39:17

and chilling to me. I was in

39:19

Cleveland at the Children's

39:21

hospital. They're doing a kind of a

39:24

listening session with parents

39:26

of kids with pre existing

39:28

conditions, and I was talking to

39:30

a group of parents and I'll never forget a father

39:33

saying to me that he

39:35

said, look, I own my own company, I do

39:37

very well financially, but I

39:39

cannot ensure my two daughters

39:42

who have cerebral

39:45

palsy. And I can't find

39:47

insurance at any cost, he said. I'll tell

39:49

you the last time I was talking to an

39:51

insurance agent, I said, look, I can afford

39:53

to pay for a good policy, and

39:55

the guy looked at me and he said, you

39:58

don't understand. We don't ensure

40:00

burning houses. So

40:03

even well off people, people who

40:05

could travel, people who were

40:07

able to they thought afford

40:10

care for children with previousting conditions,

40:13

even they were shut out of our systems.

40:15

So my understanding and awareness

40:18

of the inequities, particularly

40:20

with regard to children grew over time.

40:23

While we're talking, Feiser and

40:26

Maderna are studying their

40:28

COVID nineteen vaccines in younger

40:31

kids, and certainly,

40:33

as a parent of three

40:35

kids, I'm very hopeful that

40:37

they will be able to

40:39

gather the necessary evidence

40:41

over the next few months around what doses

40:44

are effective and safe

40:46

to help protect kids from COVID

40:49

nineteen. And yet

40:51

the majority of medicines

40:54

that are on the market

40:56

and available today actually weren't weren't

40:58

tested in kids. In fact,

41:00

like for most of American history, there

41:02

weren't even very real

41:05

or meaningful FDA regulations on prescribing

41:08

kind of correct head dosages of medications

41:11

to kids. So, since I know this

41:13

is an issue that you worked hard

41:15

to try to help remedy, when did

41:18

you first become aware

41:20

that there was more kind of guesswork

41:23

than actual, like rigorous science

41:25

in the dosing of medicines

41:28

too kids And how did you try

41:30

to change that? I

41:32

think I first really became

41:34

aware of it through my

41:37

friend Elizabeth Glazer, who was

41:39

the advocate for pediatric

41:42

HIV age treatment. Because for those

41:45

who don't know the story, Elizabeth,

41:47

she contracted HIV through

41:50

a blood transfusion and she

41:53

passed it on through breast milk first

41:55

to her daughter than to her son, and

41:58

when she got diagnosed post and then the

42:00

kids were found to be HIV positive,

42:03

She's the one who really discovered

42:06

in a very dramatic way that

42:08

people were just guessing at what

42:11

kind of dosage of what kind

42:13

of drugs could be given to children

42:15

who had contracted HIV,

42:18

And she started an organization

42:21

to really raise that awareness,

42:23

and she she brought her

42:25

concerns to me in the ninety two

42:28

campaign. You know, although her

42:30

immediate and urgent request

42:33

was to figure out how best

42:35

to test and then treat

42:38

kids with HIV, she had uncovered

42:40

this much bigger problem that we were testing

42:43

hardly anything on children, and

42:45

so she became an

42:48

eloquent, determined advocate,

42:51

and in nineteen I think goes back to Congress

42:55

tried to incentivize pharma

42:58

to start testing and

43:00

try to figure out accurate doses of

43:03

medicine for kids, and in

43:05

two thousand two, the Best Pharmaceuticals

43:08

for Children Act was passed, but with

43:10

an expiration date of two thousand seven.

43:12

And then when two thousand

43:15

seven rolled around, I introduced

43:18

legislation called the Pediatric

43:20

Research Equity Act because

43:22

what we kept saying is that children are not

43:24

just little adults. I mean, you don't say, okay,

43:27

the average adult who weighs like a d

43:29

two hundred pounds, here's the dose for them. So

43:31

okay, so the kid weighs thirty pounds,

43:33

so let's just cut it that. No, that is not that

43:36

is not appropriate science. That

43:38

doesn't make any sense. You had to

43:40

do specific testing

43:43

so that pediatricians had more confidence

43:45

about what were the appropriate

43:48

doses. And this has

43:50

been, you know, a very long long

43:53

struggle. We have made a

43:55

lot of progress. I would argue, we're still

43:58

not where we need to be in making

44:00

sure that kids are included. But

44:02

the same was true for women, Chelsea.

44:04

I mean, it wasn't literally until the nineteen

44:07

eighties that it became clear

44:09

that the n i H, the premier research

44:11

institute on health in our

44:13

country, often was not testing

44:16

drugs on women. And my

44:18

former colleague and good friend, Barbara mccowski,

44:21

the former senator from Maryland, she

44:23

just led a huge effort

44:26

to try to require our own

44:28

government to test drugs

44:30

for literally breast cancer on women

44:32

and not just on men, because

44:35

we still have a lot of drugs

44:37

that we're guessing at when it comes

44:39

to what the appropriate dosage

44:42

for kids should be.

44:44

Mom, I am curious, now, why

44:46

did that take so long? Like what was

44:48

the resistance at the time. Was

44:50

it just kind of a disinteresting kids?

44:53

Was it not a sufficient understanding

44:56

that kids aren't actually many

44:58

adults? Why didn't take

45:01

so long? And what did you still have

45:03

to push through to even achieve what you

45:05

and others, thankfully we're able to

45:07

achieve, and that obviously President Bush signed

45:10

and helped move us forward. Well, I think

45:12

you have to go way way back. I think

45:14

the model for medicine has

45:17

been a white man that

45:19

has been the centerpiece

45:21

of medical discovery, experimentation,

45:25

modeling, you know, for centuries, and

45:28

it was first thought that you couldn't really

45:31

have a reliable testing

45:33

on women because women got

45:35

pregnant and women had periods, and

45:38

women's hormones were different. And

45:40

literally that was the response

45:43

when people like Barbara mccolski started

45:46

saying, how can you be researching

45:48

breast cancer and you have no women in your

45:50

clinical research pool? And

45:53

there were all kinds of excuses,

45:56

some of them frankly rooted

45:58

in blindness, I would say, more than

46:00

indifference. It was just a kind of

46:02

this is the way we've always done it. We

46:04

then don't have to take into account these

46:06

variables. Were trying to figure out something

46:09

that's complicated enough, so the

46:11

first effort had to be to get

46:13

women included in clinical

46:16

trials for all kinds of treatments.

46:18

So then slowly in the nineties

46:21

it became obvious like if women

46:23

had been left out, what about

46:26

kids, because you know, doctors

46:28

were prescribing lots of

46:30

medicine for children. I was looking

46:32

up something that I had seen

46:35

back in the day when your dad ordered

46:37

the beginning effort to try to test

46:40

more drugs and figure out proper doses.

46:42

That this was back in in and

46:46

at the Clinton administration's direction,

46:49

the f d A compiled the list of

46:51

the ten most widely prescribed drugs

46:53

for children but not tested on them.

46:56

And these drugs had been prescribed

46:58

five million times in one

47:00

year for children in age

47:02

groups for which the labels carried a

47:04

disclaimer or lacked adequate

47:07

information on usage. For example,

47:09

a drug we all know a lot about called

47:12

riddling, it was prescribed in one year

47:15

and twenty six thousand times to children

47:17

under six am Picillan

47:20

injections for treatment of infection

47:22

prescribed six hundred thousand times to patients

47:24

under sixteen. Prozac prescribed

47:27

three nine thousand times to patients

47:29

under sixteen. Now, I could go on

47:32

and on, but it's not like doctors

47:34

weren't prescribing these drugs for kids,

47:36

because they were, but they've never been

47:38

tested on kids. Then,

47:41

you know, we began slowly

47:43

to try to get the government

47:46

to require the pharmaceutical

47:48

industry to do this. And

47:51

at the announcement of this there was a

47:53

White House ceremony back in I

47:56

talked about my friend Elizabeth Glazer

47:59

and what she had gone through. She eventually

48:01

died from AIDS, as did her daughter

48:04

Ariel. They hadn't prescribed

48:06

a z T even though Elizabeth

48:09

was taking it for her HIV AIDS.

48:12

The doctor told Elizabeth they couldn't

48:14

prescribe a z T for her

48:16

daughter because they didn't know what dosage to

48:18

give children. So this had like real

48:21

world effects on

48:23

specific kids. I'm

48:26

curious, given that you've spent so much

48:28

of your career and even your life

48:30

focused on trying to help protect

48:33

and promote the rights of children, are

48:35

there other areas in public health

48:37

broadly where you don't think we've

48:39

paid enough attention to kids. Well,

48:42

I think still it's the case

48:45

that poor children, children of

48:47

color, children in isolated

48:50

geographic areas, you know, they're just

48:52

not having the opportunity

48:55

to access quality, affordable health

48:57

care in an orderly predictable

48:59

way that they should. When

49:02

you have the chance to expand Medicaid

49:04

and states like Texas

49:06

refusing to do so, you get

49:09

predictable results. You have

49:11

not only a huge uninsured

49:14

population, but a sicker

49:16

population, and you have, for

49:18

example, maternal mortality

49:20

rates that are third world. If people

49:23

cannot actually get to care,

49:25

if they cannot afford care, it's

49:28

not just the adults who suffer,

49:30

it's also their kids and

49:33

We used to have school nurses many many,

49:35

many places. No longer do we

49:37

used to have. You know, hundred years ago, when

49:39

I was in elementary school, we used

49:41

to have eye exams in the school, and

49:44

so a family that couldn't

49:46

necessarily afford to take their child

49:49

to get an eye exam would find out that their

49:51

child needed glasses. There

49:53

were informal as well as formal

49:55

programs that tried to fill

49:58

gaps, and you know, now we

50:00

just have a lot of gaps. The inequity

50:02

that stalks our health care system

50:04

is particularly egregious

50:06

when it comes to kids because a

50:09

lot of conditions, a lot of not

50:11

just physical but mental health problems

50:14

could be addressed earlier,

50:16

but there's just not the ability

50:19

of a family or even the

50:21

access to such care that would

50:23

be required. Well, then it certainly

50:26

sounds like that's exactly the role

50:28

then, that we would hope that schools would play.

50:31

I certainly believe that as we

50:33

think about how best to help kids

50:35

catch up on all the well child visits that unfortunately

50:37

have been missed over the last almost

50:40

a year and a half of COVID, that we should

50:42

really return to thinking about schools

50:44

as being an important part of helping

50:47

to protect and promote kids

50:49

health and also are shared public health.

50:52

Yeah, you know, when you were talking, I was

50:54

thinking about how when I was first Lady

50:56

of Arkansas, I continued

50:59

the work started a prior first Lady

51:01

Betty Bumpers, whose husband Dale Bumpers, had

51:03

been governor to governorships

51:05

before Bill, and she had been a

51:08

real leader in vaccination

51:10

efforts. And we continued

51:13

that work and we finally with

51:15

the children's vaccines primarily

51:19

measles, what's at measles, mumps

51:21

and rebella rebella MMR,

51:23

we finally reached that point.

51:27

Now the gains that we had

51:29

made with vaccination are under

51:31

attack by all the

51:33

various self interested

51:36

and misguided anti vax

51:38

or forces, and we're going

51:40

backwards. So the work

51:43

is never done. I mean, there's always some

51:45

additional challenge. But

51:48

I have to confess I didn't

51:50

think making the case for life

51:53

saving, injury saving, distress

51:55

saving childhood vaccinations

51:57

would be something we'd have to keep argueing

52:00

for. I remember when I was first

52:02

Lady, and I think you know, I mean, you were with me. We

52:04

were in Zimbabwe and I went to

52:06

visit a health clinic and

52:09

the doctors and the nurses there were

52:11

telling me that one of their biggest problems

52:13

was an outbreak and a resumption of

52:15

measles and the particular

52:17

strain at that point in the nineties and

52:19

Zimbabwe was blinding kids.

52:22

So they were seeing an increase in blind

52:24

children. And I remember thinking,

52:27

so terrible, we have to help them, but I'm so

52:29

relieved that we we have vaccinated

52:32

our kids. Well, you know, my parents

52:34

were thrilled when vaccines came along,

52:36

particularly the polio vaccine, which was something

52:39

that everybody was terrified about

52:41

when it came to polio. I remember

52:44

Grandma, my grandma, your mom

52:46

talking about how like

52:48

one of the greatest days of her life was

52:50

when she could get you vaccine

52:53

against polio. Yeah, and we did it in the school

52:55

and you'll have to wait in line and

52:58

it was a long wait, but it was worth it.

53:03

Well, Mom on that not

53:06

cheery, but hopefully just kind

53:08

of we all need to recommit to the work.

53:10

Note we do get vaccinated,

53:13

Yes, yes, get vaccinated. Thank

53:15

you Mom for your time today. As ever, well,

53:17

thank you Chelsea for your

53:20

podcast, which I have really enjoyed listening

53:22

to. And you know, we're in a battle

53:25

to try to reassert the primacy

53:27

of facts, evidence and truth. So thank

53:29

you for being on the front lines of that. You

53:34

can keep up with my mom on her podcast,

53:37

You and me both as

53:41

we heard today, we still have

53:43

our work cut out for us when it comes to making sure

53:46

that every aspect of our public health system

53:48

is inclusive and responsive to the

53:50

needs of different populations in different

53:52

people. That means ensuring that new

53:55

drugs and treatments aren't tested solely

53:57

on adult white men, building

53:59

a verse healthcare workforce, and

54:02

making sure that healthcare is affordable and accessible

54:04

for everyone. Talking

54:06

with people who've been working on these issues for a

54:08

long time always leaves me feeling inspired

54:11

and energized, and I certainly hope that

54:13

you feel the same way. Thanks for listening.

54:16

We'll be back next week. In

54:19

Fact is brought to you by I Heart Radio.

54:22

We're produced by Erica Goodmanson, Lauren

54:24

Peterson, Cathy Russo, Julie

54:26

Subrian, and Justin Wright, with help from

54:28

the Hidden Light team of Barry Lurry,

54:30

Sarah Horowitz, Nikki Huggett,

54:32

Emily Young and Humanity, with

54:35

additional support from Lindsay Hoffman. Original

54:37

music is by Justin Wright. If

54:40

you liked this episode of in fact, please

54:42

make sure to subscribe so you never miss an episode,

54:44

and tell your family and friends to do the same. If

54:47

you really want to help us out, leave us a review on

54:49

Apple Podcasts. Thanks again

54:51

for listening, and see you next week.