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TEDWomen 2013

Paula Johnson: His and hers … healthcare

December 5, 2013

Every cell in the human body has a sex, which means that men and women are different right down to the cellular level. Yet too often, research and medicine ignore this insight -- and the often startlingly different ways in which the two sexes respond to disease or treatment. As pioneering doctor Paula Johnson describes in this thought-provoking talk, lumping everyone in together means we essentially leave women's health to chance. It's time to rethink.

Paula Johnson - Women's-health expert
Dr. Paula Johnson is a pioneer in looking at health from a woman's perspective. Full bio

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Double-click the English subtitles below to play the video.
Some of my most wonderful memories of childhood
00:12
are of spending time with my grandmother, Mamar,
00:15
in our four-family home in Brooklyn, New York.
00:18
Her apartment was an oasis.
00:22
It was a place where I could sneak a cup of coffee,
00:25
which was really warm milk
with just a touch of caffeine.
00:27
She loved life.
00:31
And although she worked in a factory,
00:34
she saved her pennies and she traveled to Europe.
00:36
And I remember poring over those pictures with her
00:39
and then dancing with her to her favorite music.
00:43
And then, when I was eight and she was 60,
00:47
something changed.
00:51
She no longer worked or traveled.
00:53
She no longer danced.
00:56
There were no more coffee times.
00:57
My mother missed work and took her to doctors
01:00
who couldn't make a diagnosis.
01:02
And my father, who worked at night,
would spend every afternoon with her,
01:05
just to make sure she ate.
01:10
Her care became all-consuming for our family.
01:13
And by the time a diagnosis was made,
01:18
she was in a deep spiral.
01:20
Now many of you will recognize her symptoms.
01:22
My grandmother had depression.
01:26
A deep, life-altering depression,
01:28
from which she never recovered.
01:32
And back then, so little
was known about depression.
01:35
But even today, 50 years later,
01:39
there's still so much more to learn.
01:42
Today, we know that women
are 70 percent more likely
01:45
to experience depression over their lifetimes
01:50
compared with men.
01:53
And even with this high prevalence,
01:55
women are misdiagnosed between
30 and 50 percent of the time.
01:58
Now we know that women are more likely
02:05
to experience the symptoms
of fatigue, sleep disturbance,
02:07
pain and anxiety compared with men.
02:13
And these symptoms are often overlooked
02:15
as symptoms of depression.
02:18
And it isn't only depression in which
these sex differences occur,
02:21
but they occur across so many diseases.
02:25
So it's my grandmother's struggles
02:29
that have really led me on a lifelong quest.
02:31
And today, I lead a center in which the mission
02:35
is to discover why these sex differences occur
02:38
and to use that knowledge
02:42
to improve the health of women.
02:44
Today, we know that every cell has a sex.
02:47
Now, that's a term coined
by the Institute of Medicine.
02:51
And what it means is that
men and women are different
02:55
down to the cellular and molecular levels.
02:59
It means that we're different
across all of our organs.
03:03
From our brains to our hearts, our lungs, our joints.
03:08
Now, it was only 20 years ago
03:14
that we hardly had any data on women's health
03:18
beyond our reproductive functions.
03:22
But then in 1993,
03:25
the NIH Revitalization Act was signed into law.
03:27
And what this law did was it mandated
03:32
that women and minorities
be included in clinical trials
03:35
that were funded by the National Institutes of Health.
03:39
And in many ways, the law has worked.
03:43
Women are now routinely
included in clinical studies,
03:46
and we've learned that there are major differences
03:50
in the ways that women and men
03:52
experience disease.
03:54
But remarkably,
03:57
what we have learned about these
differences is often overlooked.
03:59
So, we have to ask ourselves the question:
04:04
Why leave women's health to chance?
04:08
And we're leaving it to chance in two ways.
04:12
The first is that there is so much more to learn
04:15
and we're not making the investment
04:19
in fully understanding the extent
of these sex differences.
04:21
And the second is that we aren't
taking what we have learned,
04:25
and routinely applying it in clinical care.
04:30
We are just not doing enough.
04:34
So, I'm going to share with you three examples
04:38
of where sex differences have
impacted the health of women,
04:40
and where we need to do more.
04:44
Let's start with heart disease.
04:46
It's the number one killer of women
in the United States today.
04:48
This is the face of heart disease.
04:53
Linda is a middle-aged woman,
04:56
who had a stent placed in one of the arteries
04:59
going to her heart.
05:01
When she had recurring symptoms
she went back to her doctor.
05:03
Her doctor did the gold standard test:
05:07
a cardiac catheterization.
05:09
It showed no blockages.
05:11
Linda's symptoms continued.
05:14
She had to stop working.
05:16
And that's when she found us.
05:18
When Linda came to us, we did
another cardiac catheterization
05:21
and this time, we found clues.
05:25
But we needed another test
05:29
to make the diagnosis.
05:31
So we did a test called an intracoronary ultrasound,
05:34
where you use soundwaves to look at the artery
05:38
from the inside out.
05:41
And what we found
05:43
was that Linda's disease didn't look like
05:45
the typical male disease.
05:48
The typical male disease looks like this.
05:51
There's a discrete blockage or stenosis.
05:54
Linda's disease, like the disease of so many women,
05:57
looks like this.
06:02
The plaque is laid down more evenly, more diffusely
06:04
along the artery, and it's harder to see.
06:07
So for Linda, and for so many women,
06:11
the gold standard test wasn't gold.
06:14
Now, Linda received the right treatment.
06:18
She went back to her life and, fortunately, today
06:21
she is doing well.
06:23
But Linda was lucky.
06:25
She found us, we found her disease.
06:27
But for too many women, that's not the case.
06:29
We have the tools.
06:32
We have the technology to make the diagnosis.
06:34
But it's all too often that these sex diffferences
06:38
are overlooked.
06:42
So what about treatment?
06:44
A landmark study that was published two years ago
06:46
asked the very important question:
06:49
What are the most effective treatments
for heart disease in women?
06:51
The authors looked at papers
written over a 10-year period,
06:56
and hundreds had to be thrown out.
07:00
And what they found out was that
of those that were tossed out,
07:02
65 percent were excluded
07:07
because even though women
were included in the studies,
07:11
the analysis didn't differentiate
between women and men.
07:15
What a lost opportunity.
07:22
The money had been spent
07:25
and we didn't learn how women fared.
07:27
And these studies could not contribute one iota
07:29
to the very, very important question,
07:32
what are the most effective treatments
07:34
for heart disease in women?
07:37
I want to introduce you to
Hortense, my godmother,
07:39
Hung Wei, a relative of a colleague,
07:45
and somebody you may recognize --
07:48
Dana, Christopher Reeve's wife.
07:51
All three women have something
very important in common.
07:54
All three were diagnosed with lung cancer,
07:59
the number one cancer killer of women
08:02
in the United States today.
08:05
All three were nonsmokers.
08:08
Sadly, Dana and Hung Wei died of their disease.
08:12
Today, what we know is that women who are
nonsmokers are three times more likely
08:17
to be diagnosed with lung cancer than are men
08:23
who are nonsmokers.
08:26
Now interestingly, when women are
diagnosed with lung cancer,
08:28
their survival tends to be better than that of men.
08:31
Now, here are some clues.
08:35
Our investigators have found that there are
08:36
certain genes in the lung tumor
cells of both women and men.
08:39
And these genes are activated
08:43
mainly by estrogen.
08:46
And when these genes are over-expressed,
08:48
it's associated with improved survival
08:51
only in young women.
08:53
Now this is a very early finding
08:56
and we don't yet know whether it has relevance
08:58
to clinical care.
09:01
But it's findings like this that may provide hope
09:04
and may provide an opportunity to save lives
09:08
of both women and men.
09:10
Now, let me share with you an example
09:13
of when we do consider sex differences,
it can drive the science.
09:14
Several years ago a new lung cancer drug
09:18
was being evaluated,
09:21
and when the authors looked
at whose tumors shrank,
09:22
they found that 82 percent were women.
09:27
This led them to ask the question: Well, why?
09:30
And what they found
09:33
was that the genetic mutations
that the drug targeted
09:35
were far more common in women.
09:38
And what this has led to
09:41
is a more personalized approach
09:42
to the treatment of lung cancer
that also includes sex.
09:45
This is what we can accomplish
09:49
when we don't leave women's health to chance.
09:51
We know that when you invest in research,
09:55
you get results.
09:58
Take a look at the death rate
from breast cancer over time.
09:59
And now take a look at the death rates
10:04
from lung cancer in women over time.
10:06
Now let's look at the dollars
invested in breast cancer --
10:09
these are the dollars invested per death --
10:13
and the dollars invested in lung cancer.
10:16
Now, it's clear that our investment in breast cancer
10:20
has produced results.
10:25
They may not be fast enough,
10:27
but it has produced results.
10:29
We can do the same
10:31
for lung cancer and for every other disease.
10:33
So let's go back to depression.
10:38
Depression is the number one cause
10:41
of disability in women in the world today.
10:44
Our investigators have found
10:48
that there are differences in the brains
10:50
of women and men
10:52
in the areas that are connected with mood.
10:54
And when you put men and women
10:57
in a functional MRI scanner --
10:59
that's the kind of scanner that shows how the brain is functioning when it's activated --
11:01
so you put them in the scanner
and you expose them to stress.
11:05
You can actually see the difference.
11:09
And it's findings like this
11:13
that we believe hold some of the clues
11:16
for why we see these very significant sex differences
11:19
in depression.
11:23
But even though we know
11:25
that these differences occur,
11:26
66 percent
11:29
of the brain research that begins in animals
11:32
is done in either male animals
11:36
or animals in whom the sex is not identified.
11:38
So, I think we have to ask again the question:
11:43
Why leave women's health to chance?
11:46
And this is a question that haunts those of us
11:51
in science and medicine
11:54
who believe that we are on the verge
of being able to dramatically improve
11:56
the health of women.
12:02
We know that every cell has a sex.
12:04
We know that these differences
are often overlooked.
12:06
And therefore we know that women
are not getting the full benefit
12:09
of modern science and medicine today.
12:13
We have the tools
12:17
but we lack the collective will and momentum.
12:19
Women's health is an equal rights issue
12:23
as important as equal pay.
12:26
And it's an issue of the quality
12:29
and the integrity of science and medicine.
12:31
(Applause)
12:34
So imagine the momentum we could achieve
12:42
in advancing the health of women
12:46
if we considered whether these
sex differences were present
12:49
at the very beginning of designing research.
12:51
Or if we analyzed our data by sex.
12:55
So, people often ask me:
12:59
What can I do?
13:01
And here's what I suggest:
13:03
First, I suggest that you think about women's health
13:05
in the same way
13:09
that you think and care about other
causes that are important to you.
13:11
And second, and equally as important,
13:17
that as a woman,
13:20
you have to ask your doctor
13:22
and the doctors who are caring
for those who you love:
13:25
Is this disease or treatment different in women?
13:29
Now, this is a profound question
because the answer is likely yes,
13:34
but your doctor may not know
the answer, at least not yet.
13:38
But if you ask the question,
your doctor will very likely
13:42
go looking for the answer.
13:46
And this is so important,
13:48
not only for ourselves,
13:51
but for all of those whom we love.
13:53
Whether it be a mother, a daughter, a sister,
13:55
a friend or a grandmother.
14:00
It was my grandmother's suffering
14:03
that inspired my work
14:06
to improve the health of women.
14:08
That's her legacy.
14:11
Our legacy can be to improve the health of women
14:13
for this generation
14:18
and for generations to come.
14:20
Thank you.
14:23
(Applause)
14:25

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Paula Johnson - Women's-health expert
Dr. Paula Johnson is a pioneer in looking at health from a woman's perspective.

Why you should listen

Ever think you were having a heart attack? It turns out that many of the well-known early symptoms, such as chest pain and pressure from left arm to jaw, are more typically experienced by men. Women are more likely to experience shortness of breath, unusual perspiration and abdominal discomfort. Dr. Paula Johnson was one of the first to ask big questions about women's experience of cardiac care -- and their access to care that meets their needs.

Johnson and her team at Brigham and Women's Hospital in Boston focus on mentoring, measuring and bringing together expertise from practicing clinicians and academics to improve women's health. She says: "One of our core responsibilities will be to address critical questions ... such as, 'How do sex and gender impact health and health outcomes?' and 'How can health disparities among different groups of women be eliminated?'"

The original video is available on TED.com
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