Paula Johnson: His and hers ... healthcare

Some of my most wonderful memories of childhood

are of spending time with my grandmother, Mamar,

in our four-family home in Brooklyn, New York.

Her apartment was an oasis.

It was a place where I could sneak a cup of coffee,

which was really warm milk with just a touch of caffeine.

She loved life.

And although she worked in a factory,

she saved her pennies and she traveled to Europe.

And I remember poring over those pictures with her

and then dancing with her to her favorite music.

And then, when I was eight and she was 60,

something changed.

She no longer worked or traveled.

She no longer danced.

There were no more coffee times.

My mother missed work and took her to doctors

who couldn't make a diagnosis.

And my father, who worked at night, would spend every afternoon with her,

just to make sure she ate.

Her care became all-consuming for our family.

And by the time a diagnosis was made,

she was in a deep spiral.

Now many of you will recognize her symptoms.

My grandmother had depression.

A deep, life-altering depression,

from which she never recovered.

And back then, so little was known about depression.

But even today, 50 years later,

there's still so much more to learn.

Today, we know that women are 70 percent more likely

to experience depression over their lifetimes

compared with men.

And even with this high prevalence,

women are misdiagnosed between 30 and 50 percent of the time.

Now we know that women are more likely

to experience the symptoms of fatigue, sleep disturbance,

pain and anxiety compared with men.

And these symptoms are often overlooked

as symptoms of depression.

And it isn't only depression in which these sex differences occur,

but they occur across so many diseases.

So it's my grandmother's struggles

that have really led me on a lifelong quest.

And today, I lead a center in which the mission

is to discover why these sex differences occur

and to use that knowledge

to improve the health of women.

Today, we know that every cell has a sex.

Now, that's a term coined by the Institute of Medicine.

And what it means is that men and women are different

down to the cellular and molecular levels.

It means that we're different across all of our organs.

From our brains to our hearts, our lungs, our joints.

Now, it was only 20 years ago

that we hardly had any data on women's health

beyond our reproductive functions.

But then in 1993,

the NIH Revitalization Act was signed into law.

And what this law did was it mandated

that women and minorities be included in clinical trials

that were funded by the National Institutes of Health.

And in many ways, the law has worked.

Women are now routinely included in clinical studies,

and we've learned that there are major differences

in the ways that women and men

experience disease.

But remarkably,

what we have learned about these differences is often overlooked.

So, we have to ask ourselves the question:

Why leave women's health to chance?

And we're leaving it to chance in two ways.

The first is that there is so much more to learn

and we're not making the investment

in fully understanding the extent of these sex differences.

And the second is that we aren't taking what we have learned,

and routinely applying it in clinical care.

We are just not doing enough.

So, I'm going to share with you three examples

of where sex differences have impacted the health of women,

and where we need to do more.

Let's start with heart disease.

It's the number one killer of women in the United States today.

This is the face of heart disease.

Linda is a middle-aged woman,

who had a stent placed in one of the arteries

going to her heart.

When she had recurring symptoms she went back to her doctor.

Her doctor did the gold standard test:

a cardiac catheterization.

It showed no blockages.

Linda's symptoms continued.

She had to stop working.

And that's when she found us.

When Linda came to us, we did another cardiac catheterization

and this time, we found clues.

But we needed another test

to make the diagnosis.

So we did a test called an intracoronary ultrasound,

where you use soundwaves to look at the artery

from the inside out.

And what we found

was that Linda's disease didn't look like

the typical male disease.

The typical male disease looks like this.

There's a discrete blockage or stenosis.

Linda's disease, like the disease of so many women,

looks like this.

The plaque is laid down more evenly, more diffusely

along the artery, and it's harder to see.

So for Linda, and for so many women,

the gold standard test wasn't gold.

Now, Linda received the right treatment.

She went back to her life and, fortunately, today

she is doing well.

But Linda was lucky.

She found us, we found her disease.

But for too many women, that's not the case.

We have the tools.

We have the technology to make the diagnosis.

But it's all too often that these sex diffferences

are overlooked.

So what about treatment?

A landmark study that was published two years ago

asked the very important question:

What are the most effective treatments for heart disease in women?

The authors looked at papers written over a 10-year period,

and hundreds had to be thrown out.

And what they found out was that of those that were tossed out,

65 percent were excluded

because even though women were included in the studies,

the analysis didn't differentiate between women and men.

What a lost opportunity.

The money had been spent

and we didn't learn how women fared.

And these studies could not contribute one iota

to the very, very important question,

what are the most effective treatments

for heart disease in women?

I want to introduce you to Hortense, my godmother,

Hung Wei, a relative of a colleague,

and somebody you may recognize --

Dana, Christopher Reeve's wife.

All three women have something very important in common.

All three were diagnosed with lung cancer,

the number one cancer killer of women

in the United States today.

All three were nonsmokers.

Sadly, Dana and Hung Wei died of their disease.

Today, what we know is that women who are nonsmokers are three times more likely

to be diagnosed with lung cancer than are men

who are nonsmokers.

Now interestingly, when women are diagnosed with lung cancer,

their survival tends to be better than that of men.

Now, here are some clues.

Our investigators have found that there are

certain genes in the lung tumor cells of both women and men.

And these genes are activated

mainly by estrogen.

And when these genes are over-expressed,

it's associated with improved survival

only in young women.

Now this is a very early finding

and we don't yet know whether it has relevance

to clinical care.

But it's findings like this that may provide hope

and may provide an opportunity to save lives

of both women and men.

Now, let me share with you an example

of when we do consider sex differences, it can drive the science.

Several years ago a new lung cancer drug

was being evaluated,

and when the authors looked at whose tumors shrank,

they found that 82 percent were women.

This led them to ask the question: Well, why?

And what they found

was that the genetic mutations that the drug targeted

were far more common in women.

And what this has led to

is a more personalized approach

to the treatment of lung cancer that also includes sex.

This is what we can accomplish

when we don't leave women's health to chance.

We know that when you invest in research,

you get results.

Take a look at the death rate from breast cancer over time.

And now take a look at the death rates

from lung cancer in women over time.

Now let's look at the dollars invested in breast cancer --

these are the dollars invested per death --

and the dollars invested in lung cancer.

Now, it's clear that our investment in breast cancer

has produced results.

They may not be fast enough,

but it has produced results.

We can do the same

for lung cancer and for every other disease.

So let's go back to depression.

Depression is the number one cause

of disability in women in the world today.

Our investigators have found

that there are differences in the brains

of women and men

in the areas that are connected with mood.

And when you put men and women

in a functional MRI scanner --

that's the kind of scanner that shows how the brain is functioning when it's activated --

so you put them in the scanner and you expose them to stress.

You can actually see the difference.

And it's findings like this

that we believe hold some of the clues

for why we see these very significant sex differences

in depression.

But even though we know

that these differences occur,

66 percent

of the brain research that begins in animals

is done in either male animals

or animals in whom the sex is not identified.

So, I think we have to ask again the question:

Why leave women's health to chance?

And this is a question that haunts those of us

in science and medicine

who believe that we are on the verge of being able to dramatically improve

the health of women.

We know that every cell has a sex.

We know that these differences are often overlooked.

And therefore we know that women are not getting the full benefit

of modern science and medicine today.

We have the tools

but we lack the collective will and momentum.

Women's health is an equal rights issue

as important as equal pay.

And it's an issue of the quality

and the integrity of science and medicine.

(Applause)

So imagine the momentum we could achieve

in advancing the health of women

if we considered whether these sex differences were present

at the very beginning of designing research.

Or if we analyzed our data by sex.

So, people often ask me:

What can I do?

And here's what I suggest:

First, I suggest that you think about women's health

in the same way

that you think and care about other causes that are important to you.

And second, and equally as important,

that as a woman,

you have to ask your doctor

and the doctors who are caring for those who you love:

Is this disease or treatment different in women?

Now, this is a profound question because the answer is likely yes,

but your doctor may not know the answer, at least not yet.

But if you ask the question, your doctor will very likely

go looking for the answer.

And this is so important,

not only for ourselves,

but for all of those whom we love.

Whether it be a mother, a daughter, a sister,

a friend or a grandmother.

It was my grandmother's suffering

that inspired my work

to improve the health of women.

That's her legacy.

Our legacy can be to improve the health of women

for this generation

and for generations to come.

Thank you.

(Applause)