Ep04: A Discussion with Shannon Cohn and Dr. Antonella Santuccione Chadha on Women's Health

[00:00:04] Dan Kendall: Welcome to the Brain Health News Podcast, part of Health UNMUTED. This podcast was created by Mission Based Media in association with the Davos Alzheimer's Collaborative. 

It was recorded in January, 2024 at the World Economic Forum annual meeting in Davos, Switzerland. This episode is hosted by Richard Lui, an author, filmmaker, and anchor for NBC and MSNBC. 

He delves into the important topic of equity and its impact on different genders in relation to brain health. Join us as we explore the crucial work being done to advocate for greater equity and understanding in brain health.  

[00:00:40] Richard Lui: All right, welcome to another conversation, the Davos Brain Health Impact Conversations, and today we are sitting with two very interesting guests. First off with Antonella Santuccione Chadha and Shannon Cohn. And we are going to discuss the idea of brain health impact in our conversation related to equity and how it may affect different genders. And I want to start with, first, if you could just introduce yourselves and then, relevant to the topic space, that would be great, we're going to hop straight into it. Why don't you go first? 

[00:01:12] Antonella Santuccione Chadha: Thank you very much. In a nutshell, I'm a medical doctor and neuroscientist.

I had the privilege of being part of the team of scientists who characterized the first molecule for treating Alzheimer's disease, aducanumab. This was actually done in Zurich. And, I became very much passionate, of course, on the topic of Alzheimer's disease, but most importantly, why and how Alzheimer's impacts the female population.

Because we can say that Alzheimer's, it's predominantly women. So I co-founded the Women's Brain Project. Now we are transforming into a foundation. I am one of the founder and current chief executive officer. 

[00:01:51] Shannon Cohn: I'm Shannon Cohn and I am a documentary filmmaker, an attorney and a social impact strategist.

So, we are a lot of different healths, I wear a lot of different hats. And especially in health care, recently, in the past 10 years, I've been making films about women's health and specifically lately about endometriosis, which, a lot of people may be like, endo what? 

[00:02:14] Richard Lui: Tell us, what is it?

[00:02:15] Shannon Cohn: I know, it's arguably the most common devastating disease that most people have never heard of. It affects approximately 200 million girls and women on the planet.

Yet, it takes an average of 8 doctors over 10 years to be diagnosed. So there are a lot of issues to unpack with just this couple of sentences. 

[00:02:33] Antonella Santuccione Chadha: I just want to say that I can absolutely confirm and it is one of the biggest unmet need in the whole medical field for women specifically.

And it's not just the reproductive system endometriosis. It impacts the whole being of a woman, including the cognitive performance of an individual. And unfortunately this was not at the focus of clinical development. I think the problem is huge because medicine and research did not consider sex and gender characteristic, as well as ethnicity, if I may, the way it should. And it starts from mice. We have that the mice models used for understanding diseases. It really doesn't matter whether it's a man, or it’s a male or female. And when you say, why haven't you included female mice for your experiment?

It's too expensive. It's too complicated. It's too complex. They have the menstrual cycle that makes things very mysterious. What about the hormonal cycle of the male mouse and the gentleman in the room? They also have it and it is as complex as the women one. 

[00:03:41] Richard Lui: Only male mice? 

[00:03:43] Antonella Santuccione Chadha: Only male mice, but it can go to any other type of animal model.

We also have dogs in our experiments. Unfortunately, we have to sacrifice animals to understand diseases. 

[00:03:51] Richard Lui: Yes. 

[00:03:52] Antonella Santuccione Chadha: But as I said, it's also about the male body that has an impact of what it's called andropause. 

[00:03:57] Richard Lui: Yeah.

[00:03:58] Antonella Santuccione Chadha: If I tell you what is andropause, most of the people don't know. It is the change of the hormones that occurs as much as in the women body menopause when we start to age, and female has it, but men too.

And has this been considered in the way we bring treatment solutions to the patients? No, not for women, not for men. So it's time to do precision medicine. 

[00:04:21] Richard Lui: Why the women's brain health foundation? 

[00:04:24] Antonella Santuccione Chadha: I’ll tell you. There is a personal story and it's the first that I shared in front of a camera, very personal one.

I was a happy married woman, fully in love. I thought the world was mine and we wanted to have a family. I was a psychiatrist, I was doing neuroscience. You feel great and happy and powerful, and my first pregnancy, surprise, surprise, was an encephalia. So I had a baby girl without the scalp.

And when I went and read, because I'm a scientist, I wanted to know why, why to me? I learned that it happens mainly in the female embryo or fetus. So the curiosity strike me why the female brain is more vulnerable than the male one. What's the reason underneath? And then I was working as a regulator.

I was working for the Swiss regulatory agency for therapeutic products approval. This was the professional reason why, because I started to see at the raw data, I had the privilege of seeing clinical trials for any type of indication that will allow a drug to be approved and characterized for efficacy and safety.

And I was seeing with my eyes that there were differences, both for men and for women. And I was posing the question myself to the drug developers, hey, why are there more bellyache in women and headache in men, for example, I'm just making it up. And then I thought, why should it be just my single curiosity?

Why don't I make an association that now it's becoming a foundation to fix the problem? And it's called Women's Brain Project. It will be now Women's Brain Foundation. My hope is that this topic, when we will meet here in 20 years, or maybe 10 years from now, hopefully, will become obsolete. Problem solved.

We have to fix it. The next mission is gonna be ethnicity. We have to understand how ethnicity impact the metabolism and the pharmacokinetic and the pharmacodynamic of how drugs get metabolized by humans. 

[00:06:18] Richard Lui: Do you have a similar story? 

[00:06:20] Shannon Cohn: Yes, you know, it's interesting because also, of course, it comes from a personal place and I think so many of us who are working in the space or whatever our fields may be that we feel passionate about usually comes from a personal place.

I have endometriosis, yes. I first had symptoms at 16, yet didn't hear the word until 13 years later. And, like so many of us, I think especially women, I can speak as a woman, when we have symptoms, we have hardship, we suck it up, because we're told it's part of being a woman, for example, with endometriosis, suck it up, keep going, which is what I did. I'm very fortunate I have two daughters and it wasn't until after my second daughter was born, I was reading a journal article about there's a seven times increased genetic risk among sisters and between mothers and daughters.

And then, a different type of fire was lit. I think all of us, when we fight for ourselves, but if someone we love is threatened, whether it's a parent, a spouse, a child, I think we fight in a different way. And then, I, as a filmmaker and someone who puts together social impact campaigns and the fact that nothing had really changed in the course of this disease landscape, still women were going in of an average of 10 years before they even hear the word.

Yet this is a disease where up to 50 percent of infertility in women is due to this disease. 50 percent. And the truly outrageous thing is that most of it's unnecessary, completely needless. If doctors were better educated, frontline providers were better educated, researchers had more funding, for these types of conditions.

And women themselves knew their symptoms of what's normal and what isn't normal. So that's the goal, with what we're trying to do and put together the film for the awareness campaigns to educate medical providers. And at the end of the day, to generate increased research funding. Not only for endometriosis, but other health conditions that not only affect women, but maybe affect women in different ways.

[00:08:13] Richard Lui: And tell us about your films. 

[00:08:14] Shannon Cohn: Sure. The last one is called Below the Belt and it approaches endometriosis as a social justice issue. And really what it does is it looks at all of the things that we should all care about. Things like societal stigma and taboo, gender bias in medicine, racial bias in medicine, profit driven healthcare, and what happens when profit driven healthcare diverges from what's best for the patient.

And institutional barriers to care, financial barriers to good healthcare, and what does that mean. So all of these larger issues are told through the lens of four stories. Four women who have mysterious symptoms, and they try to find answers to those symptoms. And this film happens to be executive produced by Hillary Clinton, as well as Rosario Dawson and a few others.

And what we're doing is using the film as a catalyzing tool for change. It just screened for the 20,000 plus employees of the National Institutes of Health across all 27 institutes. So with the message that this isn't just a gynecological disease, it's a disease that has been found in every organ of the body.

It affects every system. So all of the institutes should care about it. And wouldn't it be amazing if, we had the system’s wide approach to all of health conditions, for example, Alzheimer's and other types of, conditions that affect brain health? 

[00:09:29] Antonella Santuccione Chadha: Absolutely. The problem is, we said it,

women were not at the center of clinical development and preclinical research. Now we are slowly changing the status quo. How to do that? You have to bring facts on the table. So we need science, scientific evidences published on peer reviewed journals and change the mindset. Not only of the practitioners, but also of the scientists that are doing their work in their lab because it's them who first of all need to understand that any compound for any type of disease, especially when there is a prevalence in specific group must be properly characterized in that group.

And this speaks for Alzheimer's. When we started our journey at the Women's Brain Project, and we have been looking at Alzheimer's specifically, some of my mentors were telling me, is it really true that Alzheimer's is female? What do you want to do about it? Is it really important? Does it matter?

Now I tell you how the story evolves. What we've learned is that Alzheimer's, it's not only about numbers, but it's also about the differences and how the disease manifests. A man might be at the beginning of the symptoms, be more prone, for instance, to have alcohol consumption, because that's where they find the safe space to relieve the, let's say, frustration of understanding that something goes wrong with them.

Or, they might be more aggressive. For women, it's just delusional. Depression. Many women get diagnosed first with depression treated with antidepressant. That's what our science showed, that women get more antidepressant prescription through the entire journey of the diseases compared to men.

So you know, it's about symptoms, it's about treatment response, it's about time to diagnose. Women get always a later diagnosis and usually they access specialized care later than a man will do. So they have, first of all, the GP that says, come back in six months, we will see, maybe you're just depressed or you had an argument at home or you're just stressed.

They go back in six months and then they hear the same. Oh well, let's wait for another six months. And finally they will go to that neurologist that says, surprise, surprise, this is not depression, this is not that you are bizarre or that you're changing, this is just that you have cognitive symptoms, cognitive deficits, which, by the way, women mask very well because we know that we compensate verbally.

We are verbally more productive than men. So the scales used to diagnose Alzheimer's, they don't pick up the symptoms at the beginning in women as good as they do in men. So we have to redesign the whole thing, if you ask me. And why it matters? We have evidences that the newly approved drug have a trend to show a stronger effect in men versus women.

And we need to understand why, which is the biology behind it. Because at the end, it is bringing the right drug at the right patient at the right time to save the cost of wrong treatment and lack of response. 

[00:12:27] Richard Lui: Every percentage quite counts. My father had Alzheimer's, my mother, dementia, and exactly what you described is what she went through and what she's going through right now.

How are your respective messages being absorbed here? We're sitting here on the promenade, you've been talking to other Davosians, what have you seen? 

[00:12:45] Shannon Cohn: Completely receptive. I think that, for example, in Davos, it was announced there's a global alliance on women's health. and the goal of that is to really not only recognize that there's a significant health research gap, a gender health gap, but to do something about it and put together a task force to do something about it.

And interestingly enough, I was just at a lunch and had eight women at my table and we didn't know each other. Yes, it was around healthcare, but we just were introducing ourselves. And four people at the table said they had endometriosis completely unexpected. One started and the next said, oh my goodness, I have endometriosis.

And all of a sudden we have this conversation that completely diverged from what we initially anticipated. And that just goes to show how prevalent it is and to speak to what you said, just in with diagnosis, it's very interesting because honestly, you would think endometriosis, Alzheimer's, totally different types of conditions. There's a very similar phenomenon that plays not only in these two conditions, but other conditions that affect women.

With endometriosis, women are typically given sedatives first and also told this is in your head or it's normal. The same type of treatment kind of chasing these symptoms, but it all comes down to women not being believed.

[00:13:59] Antonella Santuccione Chadha: I like to say because I'm always prone to solutions. I think that it's nobody's fault, it's rather a great opportunity. So we can fix this problem. And how we fix it? With what you said, cooperation. I think that's the perfect parterre. Tonight we're going to launch a letter, an open letter, across the board where we encourage to redesign the entire healthcare system with women in mind.

And, as I said, then it will be maybe with other type of shadows of genders at the table as well, because if you speak about transgenders, for example, we have zero data. We don't know how a dementia, Alzheimer's might impact people who transition and use a massive amount of hormones. So when they ask me about them, I say, guys, you have to organize yourself,

put a cohort, longitudinal cohort observing all these changes and how hormones impact and then understand what's up with your health because, again, this is another elephant in the room that nobody consider. 

[00:15:01] Richard Lui: I want to thank you both. A great conversation here at the Davos Alzheimer's Collaborative pit stop, I'll call it right now. Both of you doing some amazing work. So thank you so much. 

[00:15:11] Shannon Cohn: Thank you. 

[00:15:12] Antonella Santuccione Chadha: Thank you. 

[00:15:13] Richard Lui: Thanks for spending time with us.

[00:15:15] Dan Kendall: Thanks for tuning into the Brain Health News Podcast. Be sure to visit healthunmuted.com for more information about brain health. Please also visit www.davosalzheimerscollaborative.org for more information about the work they're doing to promote brain health and end Alzheimer's globally.