Bethesda, Maryland – May 15, 2018
Thank you, Dr. Collins, for your work to improve human health, including the Human Genome Project and the “All of Us” Precision Medicine Biobank. And thank you all for making me feel so welcome.
NIH is known for its world-renowned trailblazing medical research. The closest thing I have to a medical credential is my role in What’s Up, Doc?
So I’m honored to have been invited to speak about my work for gender equity in science and health through the Women’s Heart Alliance and the Barbra Streisand Women’s Heart Center. And I want to express my heartfelt thanks to the members of the Rall family who are here today.
The fact that the Rall Cultural Lecture series exists is a tribute to the NIH community.
It’s also a recognition that scientists and artists have much in common.
We’re both obsessed with the quest for beauty, understanding, and truth.
We’re both seeking answers to big questions about causes and consequences… hows and whys… origins and endings… life and death.
We both see magic in the smallest details—a film cell or a stem cell.
We both know the joy of the “eureka” moment… and the agony of the dead-end.
And let’s also acknowledge that, across the ages, both scientists and artists have faced skeptics and critics who try to suppress us and censor our work from the world.
But we push forward. We shine the spotlight on tough issues. We put difficult challenges under the microscope. And we embrace the miracle of humanity in its fullest wonder, across dimensions of age and race and ability and gender and sexual orientation.
Because, most of all, what links our two communities is our focus on what it means to be human. Our life’s work—our passion, our purpose—is improving and uplifting humanity.
So it’s no accident you see such mutual respect across our fields.
Renaissance masters like Michelangelo and Da Vinci were students of human anatomy.
Brilliant scientists have turned to the arts and culture for inspiration. I think of the late Dr. Ruth Kirschstein and her piano. Dr. Collins and his guitar. Or, what about Einstein? When he got stuck on a physics problem, he’d pick up his violin. He said that Mozart reconnected him to the harmony of the universe.
And of course you’re aware of the growing research that connects the arts and positive health outcomes—research that NIH is helping to lead through your Sound Health initiative. I love that NIH host concerts in the Clinical Center atrium—a tangible way that artists and scientists help make each other better… literally.
But in order for art and science, together, to have their greatest impact on society, we need to ensure that all people are included—as creators and as subjects. We need everyone’s perspective at the table and the bench, in the studio and the lab. We need everybody’s stories reflected in our research, in our studies, on our stages, and on our screens.
We’re making progress toward that greater diversity and inclusion. And if you want the evidence, look no farther than this room.
But inequities and biases in the arts and sciences persist, including fair access for women… who too often still find themselves overlooked and underrepresented.
Think about it: Women are half of the population. We’re indispensable to everything that matters most. Yet, our culture has normalized sexual harassment. We have normalized the wage gap.
We have accepted barriers—some institutional, some invisible—to women’s full participation and recognition… whether we’re talking about women in Hollywood… or women’s representation in medical research.
Over the years I had experienced gender inequality in small ways, but it wasn’t until I wanted to make a film called Yentl that I experienced it in a big way. Yentl was a story about a young woman in Eastern Europe 1904 who has to pretend she’s a man in order to get an education.
I had a clear vision of the film I wanted to make. I didn’t think it would be that difficult. I was a so-called “bankable star”. That is until I said I also wanted to direct it!
But the studios kept turning me down. It was hard to convince anyone that a female actor could direct and produce, that a woman could manage a budget, or that a mainstream audience would care about this “ethnic” and bookish female protagonist.
Just as dismaying was the contrast I saw in perceptions of authority and ambition. There was a double standard at work… and it put women at a disadvantage.
Strong men were seen as leaders, and looked up to; strong women were seen as suspect and looked down upon.
He was called assertive; while she was called aggressive.
He was called committed; she was called controlling.
Running head-on into this kind of bias was a life-changing moment for me. But I couldn’t give up… and more important, it mobilized my commitment to women’s equality. I became passionate about trying to ensure that women get the same chances in life as men.
Which brings me to the NIH!
Because, in July 1991, Dr. Bernadine Healy, who was the only female director of the NIH, published a piece in the New England Journal of Medicine that she called “The Yentl Syndrome.”
Dr. Healy was a cardiologist. And she had found that women with heart attacks were not getting the same quality of care as men. Unless a woman’s symptoms looked just like a man’s—the classic crushing pain in the chest—too often she would be misdiagnosed and undertreated. Maybe she’d be told she was having a panic attack. Maybe she’d be given an antacid. Maybe she’d be sent back home.
And maybe she’d never recover. Or maybe she would be found dead in her bed the next day.
Needless to say, when I first heard about the Yentl Syndrome, I was intrigued.
But the more I learned about women’s heart health, the more astonished and upset I became.
For much too long, CVD has been perceived as a “man’s disease”—not just from the patient viewpoint, but in the way it’s been treated by the scientific community.
Most of the research has been conducted on men, right down to primarily male mice in the lab. Most treatments and therapies were tested on men. And sex-specific differences have been neglected all the way from the lab to the ER—even though women’s bodies and biology are different, from the size of our hearts to our vascular systems to the impact of various risk factors.
Dr. Collins and others at NIH, past and present, are helping to tackle these problems.
But gaps in awareness, diagnosis, treatment, and support are still taking a painful toll in women’s lives.
Sometimes, their names make the headlines: Debbie Reynolds… Carrie Fisher… Florence Henderson… Erica Garner. Yet, behind the scenes, a woman is dying of CVD roughly every 80 seconds. Those women are our mothers, sisters, daughters, wives, and friends.
I wanted to help change that, if I could.
So in 2008, I got involved with the Women’s Heart Center at Cedars-Sinai in Los Angeles. The Center focuses on identifying female-pattern heart disease and advancing specialized care for women.
I wanted to raise awareness among women before they found themselves in the hospital.
And I wanted to help drive policy change at every level. Because the fact is, heart disease is killing more women, more people than ALL FORMS OF CANCER COMBINED!
The rate of heart disease in younger women is climbing, and women of color are especially at risk.
So in 2014, using what was known about sex differences, we created the Women’s Heart Alliance. Our mission is to prevent women from needlessly dying from heart disease and stroke.
And we start from the recognition that, biologically, men and women are not the same. In layman’s terms: We have different equipment…different plumbing!
And, we advocate for funding and research so that we can understand even more, and apply those breakthroughs to improve prevention, care, treatment, and outcomes for everyone.
As we like to say, we want to make sure women’s hearts are on everyone’s minds.
And I want to thank the NIH community for being such wonderful partners. You’re helping level the playing field with studies that recognize women’s biology is different and that make the most of every dollar invested in research. As you know, this was one of the goals of the 21st Century Cures Act—an important piece of legislation that the Women’s Heart Alliance was proud to champion. Better understanding of sex differences will not only fill in critical gaps in women’s health, but can improve men’s health as well.
A great example is the REPRIEVE trial that was launched in 2015. As Dr. Tony Fauci and I described in a piece that we co-authored for Health Affairs, REPRIEVE investigators are actively recruiting a racially and ethnically diverse group of women alongside men… and making the analysis of sex differences a key part of the study.
The study will also look at how to break down barriers for more women to become clinical trial participants—which is so important if we are to have more breakthroughs in treatments and cures. Our hope is that well-designed studies such as REPRIEVE will someday be the norm, not the exception.
But we’re not there yet. There’s much more to be done for every American to have an equal chance to lead a healthy life.
We need more funding. More sex-specific research to remedy the blind spots in our knowledge.
And the time is ripe for a great leap forward on behalf of gender equity… in health care… in science, in the workplace, in Hollywood… politics… media… and even at home.
Because everywhere you turn today, women—and their allies—are stepping up and speaking out.
Earlier this year we celebrated the first anniversary of the Women’s March—the single largest day of protest in our history.
The MeToo movement and Time’s Up are making clear that sexual harassment will not stand. Men and women have to find a new way to communicate about what’s acceptable and what isn’t.
Women are asserting the ambition and strength we’ve had in us all along—supporting one another through professional networks… on social media… and beyond.
We’re no longer content to be hidden figures. Women, like men, are demanding to be valued as creators, innovators, and human beings.
So in that spirit, let me end by sharing a story about Katherine Johnson.
If you saw the movie Hidden Figures, you will know that Katherine was one of the extraordinary NASA mathematicians who performed the complex calculations that helped land a man on the moon – that was before there were machine computers!
I met her at the White House in 2015, the year we both were honored with the Presidential Medal of Freedom. She was 97 at the time. She’ll turn 100 years old this August.
In President Obama’s words, “Katherine was a pioneer who broke the barriers of race and gender, showing generations of young people that everyone can excel in math and science, and reach for the stars.”
As the author of Hidden Figures has said, her “work changed our history and [her] history has changed our future.”
My wish for all of you is that your work, too, will make history that changes our future… and that shapes a future where all women and men can live their best possible lives.
So let’s all keep searching for the truth – artists and scientists…even some politicians. Keep searching for beauty in every cell. Keep pushing the boundaries of knowledge.
Keep asking the questions, and sharing the answers.
And help make all humanity soar… and reach for the stars.