Actress and healthcare advocate Halle Berry; geneticist Marlena Fejzo; and Daniel Skovronsky, chief scientific officer at pharmaceutical giant Eli Lilly, spoke about the importance of investing in women’s health at a TIME100 Health panel in New York on Monday.
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00:00 It is my privilege to be moderating our discussion this evening where we'll be talking about women's health and
00:06 in particular
00:08 Why it's still so difficult to talk about some issues in women's health even in 2024
00:14 So Hallie you've been working tirelessly to change the way we think about menopause
00:19 And this was this work was really inspired by an experience you had at the doctor's office. Can you share that?
00:27 Experience with us. Oh god. I'm afraid you're gonna ask me this
00:29 Okay, are you sure I am sure
00:34 Okay, guys, I'm sorry to every man in this room, but you got to hear it
00:39 The in very important it is I it is very important, but it's very graphic. So I'm just gonna warn you
00:45 I got inspired to do this work because I was 54 years old and
00:50 I found out that I was smack dab in the middle of menopause
00:55 it was something that nobody ever talked to me about my mother included I
00:59 My ego thought because I had weaned myself off insulin at 24 years old. I'm a type 2 diet, you know diabetic
01:08 I thought I'm healthy. I eat right? I'm just gonna skip this menopause
01:12 This isn't gonna happen to me. And by the way, I don't even know anything about it
01:15 So I'm sure it's not gonna happen to me. Well all of a sudden
01:18 54 years old
01:20 After being divorced three times. Sorry, but it's true. I
01:25 Meet my person the man of my life. He's sitting right there van hunt
01:29 I meet van hunt and we're having the most amazing relationship and sex was a great part of it
01:35 Everything was going fine
01:38 So one night
01:41 We're having sex and it's great
01:44 Seems like nothing in the world is wrong
01:46 That until the next morning
01:49 When I go to try to use the bathroom I
01:53 Sit down
01:55 Try to go and it's like I have razor blades in my vagina
02:00 like
02:02 razor blade cutting a cutting
02:04 Burning feeling when I let a little bit out and I squeeze
02:08 Then I let a little bit more out then I squeeze and it takes me like almost 10 minutes just to empty my bladder
02:14 I think oh god, what is going on? And then about an hour or two later
02:21 The most heinous substance you would think to excrete from anybody's body starts
02:25 Excreting and it's all colors and it has an odor that we won't discuss and I think oh my god
02:31 What happened in 24 hours?
02:33 So I call my gynecologist. Yeah, I got to come in. I got to see you right now. I'm having a bad problem
02:39 I go there. He you know does the thing. He's got me up in the stirrups. He's looking up there
02:44 He said oh god, I think I know what this is. I said really what he said you have a new partner, right?
02:49 I said, oh my god, I finally met the man of my life. He said I
02:52 Don't know if this is the man of your life. I was like, why would you say that? You don't even know him
02:58 He said because you have the worst case of herpes I have ever seen
03:04 I'm like what herpes he said. Yep. I don't think this is the man of your life because you've been given herpes
03:13 So now the man of my life who gave me these herpes is sitting down in the car because my vagina is so on fire
03:20 I couldn't even do the pedals to drive myself to the doctor
03:23 So the man who gave me herpes is sitting in the car waiting for me
03:27 So you can imagine my fury I get down to the car and see the man that gave me herpes and I'm like yo
03:33 You got fucking herpes
03:35 When were you gonna tell me you had fucking herpes
03:40 He says I don't have herpes. I'm like clearly you do because now I do and I didn't have herpes before I met you
03:47 So clearly you have herpes. He says nope. I don't have nobody's ever told me I had any herpes
03:52 I said, well, let me be the first to tell you
03:54 You've got herpes
03:57 He said no. No. No. Well, then he so he's such an empath he goes well
04:01 Maybe somebody gave me herpes along the way and I just you know, not everybody knows they have it. They're silent carriers
04:07 You know, I said well, it's not so silent now your carrier and I'm here to tell you you got herpes
04:12 He goes well, I'm gonna go to the doctor. I'm gonna get this checked out. I'm not so sure
04:15 I said yeah, go go go go find out you got herpes. So he goes and he gets checked out
04:20 I'm waiting for my results in three days
04:22 He gets his results first. He comes to me test out. Guess what? I don't have herpes. I guess you have herpes
04:29 And luckily you didn't give it to me
04:32 I'm like wow
04:34 All right, so talk about putting your tail between your legs
04:37 I'm thinking how the fuck did I get herpes? My doctor calls me later that same day. He tells me guess what Hallie?
04:44 You don't have herpes. I'm like, I don't have herpes. I'm like, why would you tell me I had herpes?
04:51 Do you know what I just went through for the last 72 hours?
04:54 He said well, I don't know. That's what it looked like to me
04:58 And this is the moment when I realized something was going on with my body. I was in perimenopause
05:04 I did my own research even my doctor then didn't say oh my bad. It's not herpes
05:08 It's actually perimenopause is vagina atrophy and your vagina is dry
05:12 And that's what it is
05:12 And if you have sex when your vagina is dry
05:15 You can tear up the inside of your vagina and this is what it would look like
05:17 He didn't tell me that I had to go do that research for myself and figure out what exactly was happening to me and what?
05:25 I could do for this vaginal atrophy so that I could continue to have a sex life with my partner and
05:31 That was the moment when I realized if I had such little information and I have the best doctors in
05:37 California and he had never even brought the subject of menopause and
05:41 The sexual part is one small part of it
05:44 There are much more health implications that go along with a woman going into menopause
05:48 But I thought if I didn't have access to this information
05:51 How many women in the world don't have access to this and how many women are suffering in silence?
05:57 How many women are feeling ashamed?
05:58 How many women don't talk to their doctors about it or they get?
06:01 Misdiagnosed and that was a moment that I knew I had to stand up for myself because by standing up for myself
06:07 I'd be standing up for every other woman and that became
06:09 My second life act my second life passion and I'm giving my my life over to it
06:16 So, sorry, I told you it was graphic that's a graphic story
06:22 It's a vicious cycle, isn't it of misinformation?
06:28 And lack of information and stigma that all feeds into itself and it's so much more than just our sexual health
06:34 You know, it's just not you know bikini medicine below the waist
06:37 Well, one of the biggest things I just would like to say what I've learned is that you know women we have hot flashes
06:42 And so many mostly men think oh, it's just hot flashes. I mean, I mean so what you're gonna be hot for four or five years
06:48 No, some women flash for two decades and every time you have a hot flash
06:52 I've now learned you're actually having a little mini stroke and when you have a little mini stroke you get these nodules on your brain and
06:59 If you study a brain of a woman in who has Alzheimer's today, it's full of these little nodules
07:05 So you find out why it's so important that we not have hot flashes. It's not just because they're uncomfortable
07:12 It's because they're doing something very detrimental to our brain with effects our health as we go through midlife in the aging process
07:19 I think that's a very important lesson for all of us to take away this evening
07:22 Marlena you also have a very personal experience that guided your research into morning sickness. So tell us about that journey
07:30 Yeah, so most pregnancies are affected by morning sickness
07:35 but I had something much more severe similar to Kate Middleton and Amy Schumer, maybe you've heard of hyper emesis gravidarum and
07:44 So when I got pregnant I was so ill that I could not move without violently vomiting
07:52 I just had to lie completely still on my back. I couldn't drink even water
07:56 And it lasted for weeks and weeks
08:00 My doctor put me on IV fluids
08:03 Then he tried different medications. Nothing worked. Eventually he tried seven different drugs at once and nothing worked
08:12 I ended up on a feeding tube and
08:14 When I had the feeding tube I started to feel a little bit better just from having energy
08:22 but it was too late and I lost the baby in the second trimester and
08:25 Through that whole horrible experience. My doctor told me that I was just trying to get attention and
08:34 I was too weak to argue with him. I actually at one point had to
08:41 Use a buzzer because I couldn't speak anymore. I was so weak
08:45 But after I recovered I do have a PhD from Harvard in genetics. I was already focused on
08:53 Women's health issues. I found the first gene for uterine fibroid tumors. So I decided to
09:01 So I decided to
09:07 work on
09:10 Finding what the real cause of hyper emesis was and
09:13 I didn't have it in my family
09:15 so I didn't know if it was genetic so I had to start from the very beginning and see if it ran in families and
09:21 do a familial aggregation study and
09:23 Then I spent the last 20 years
09:26 searching for the cause finding the gene and
09:30 the latest paper that just came out in Nature figuring out how that gene works and
09:35 Now we're on the pathway towards a cure
09:39 (applause)
09:41 Dan we've just heard about two issues in women's health that really don't get a lot of attention and
09:51 Really two women who were dismissed
09:54 You know from the medical system
09:57 You represent a big pharmaceutical company tell us a little bit about how we can ensure that women's voices are heard and the issues that
10:04 Are important to them are part of the drug development process
10:08 Yeah, thank you Alice. It's great to be here with both of you and hear your remarkable stories. Thank you for sharing them
10:15 Of course at a pharmaceutical company. We we want to help all patients that are suffering
10:20 unfortunately, there's a number of diseases that disproportionately affect women and so oftentimes our focus does turn towards
10:30 What we can do to help women maybe I quickly talk about two diseases that you may not think of as women's health issues
10:37 But actually they are starting with a disease. I've worked
10:41 On my whole life, which is Alzheimer's disease. Most people don't think of that as a women's disease
10:47 But in fact two-thirds of people with Alzheimer's disease are women
10:52 simply because
10:54 fortunately women live longer
10:57 And unfortunately Alzheimer's is an age-related disease so as you get older more likely to get it
11:02 Not only does it disproportionately affect women as patients
11:06 It turns out that the vast majority of people who are caregivers for Alzheimer's patients are also women
11:13 So when we think about the cost of Alzheimer's disease to our society over the next couple years
11:17 It will be five trillion dollars in lost productivity and direct costs of which
11:23 75% will be born by women. So it's incredibly important for our Alzheimer's trials
11:28 For example that we have women participate in the trials with two-thirds of the Alzheimer's population being women
11:34 You would think it wouldn't be a problem, but it quickly turns out it is
11:37 Although we are able to get more than half of the patients in our trial as as women
11:42 It it's difficult more difficult than you would expect to find them. One of the reasons why is that
11:48 Women are often diagnosed later
11:50 Probably for some of the same issues that both of you spoke about that the medical community sometimes is less likely to take symptoms seriously
11:58 in
12:00 women
12:01 Probably also because women have what we call perhaps a higher cognitive reserve
12:07 They're better at things like verbal memory, which is one of the first signs of Alzheimer's disease
12:10 So for women the signs show up a bit later in the disease course
12:14 And so by the time they come to trials, they may be too too advanced
12:18 so we've done a lot of things for example in this field to to encourage participation by
12:22 Women patients including trying to make our trials less onerous on the patients having them able to be conducted from home
12:32 trying to in the to the extent possible decrease the
12:36 requirements around
12:38 caregivers to come because
12:40 Men who have Alzheimer's often have a female caregiver women who have Alzheimer's may have less of a good support structure
12:47 So that that's one disease that we're working hard on to help women
12:51 The other is a disease you've heard a lot about in the press. It's obesity. It affects men and women both, of course
12:57 But it affects women differently. It turns out obesity and women is more driven to by food cravings and by hunger
13:06 Women are more likely to seek treatment for obesity, but also less likely to be taken seriously by their doctors
13:13 Even so in our clinical trials for obesity. We have the opposite problem, which is that
13:18 women
13:20 Preferentially enroll in our trials. We have to cap their participation to make sure we have some men
13:24 In the obesity trials and men often wait until they have other symptoms of disease before they they come to get treated for obesity
13:31 So we're looking at diseases that are common across the population
13:35 But trying to understand specifically how they affect women how we can hear women's voices in our clinical trials and address them with treatments
13:43 And recently President Biden has issued an executive order to prioritize and more seemly
13:49 Integrate women's health issues across the federal research spectrum Marlene
13:54 I wonder if you could just briefly tell us
13:55 How much of a difference is that going to make for for example for a scientist like yourself and the work that you do? I?
14:01 Hope for scientists like myself. It will make a big difference
14:06 I did apply for an ARPA-H grant, so we'll see in the next month or so
14:11 But yeah, I mean
14:13 One of the reasons that I'm the world's researcher in hyperamysis
14:18 Gravidarum is not because I'm so great
14:20 But just because there is no other researcher and there's it's so hard to get funding in this field so
14:26 Putting that money out. There is going to inspire other people to
14:31 Think about women's health issues and fit them into their
14:35 Whatever they're studying so that we can get more
14:40 Progress in that area so yes, I think it's fantastic
14:43 and on the subject of
14:46 governmental support Holly you have been working with some Congress people to
14:50 And have proposed legislation to more focus a little bit more on research for menopause
14:56 Yet Congress is 72% male is that a problem. That's a problem
15:05 Yes, so that's why my approach was to go to all the females in the Congress
15:11 And hope that I could get them to come together in a bipartisan way and put us first for once because this
15:19 lack of study
15:21 On the female body and midlife is long overdue
15:24 So I right now have 18 of the 25 that are sponsoring or co-sponsoring the bill
15:31 There's a few that are still holding out
15:34 And
15:36 If we can get all 25
15:38 I think I feel like with some house members and there are some there are some great men on the Senate side that are very
15:44 much behind this but there's still some women that are holding out and
15:47 to my dismay their
15:50 Trepidation is that they feel like the money that's already allocated from the NIH should be just shuffled around
15:56 but we know and I've learned through my research that
16:00 Menopausal women and women in midlife
16:03 Never get the money. There's always something more important. So my goal is to have new appropriations and have
16:10 265 million dollar that's what's the teeth of our bill have that money be allocated towards menopause and you know
16:18 Women's midlife health and I think then we'll have real dollars to do real research so that
16:23 Scientists can do all the trials, you know that they'd like to do and I think that's the only way we're really gonna start moving
16:29 The needle is to make sure we have money allocated just for us at this time
16:33 And Dan one of the reasons why we still have so much stigma around certain women's health issues is lack of information
16:46 right and for
16:47 Historically women have not been included in clinical trials for good reason for issues of safety, especially women of childbearing years
16:55 Can you tell us about what can be done or what is being done to address that and include more women?
17:01 Is there technology we've got great science now. Are there ways to get those answers without putting women's health at risk?
17:08 Yeah, I think the scientific challenges around conduct of clinical trials and women are largely largely addressed
17:14 I think with the exception of women a childbearing potential it is really about educating
17:21 Physicians mainly that we we have to spend more
17:25 Efforts there so that we can have better participation women. I
17:29 Think we can often overcome it in clinical trials
17:32 But then when we come to launching a new medicine or making a new technology available again, we face the kinds of
17:38 Ignorance or discrimination that both of you spoke about
17:41 One example is our work in migraine another disease that common much more commonly affects women
17:47 Because it's subjective a lot of times women present to their doctor with migraine and the doctor
17:54 Ignores them or says you're just seeking attention
17:57 There's all sorts of these behaviors that we talk about as medical gaslighting where doctors are actually disbelieving their women patients
18:04 And so we we have to do a lot of work to educate them because of course we want these great medicines that we've
18:09 Created to be used to help
18:13 Patients so that's also part of the role of the pharmaceutical company is to change medical practice
18:18 One of the ways that we can do that is by working with female doctors
18:23 disproportionately in our clinical trials because we know that
18:27 They're more likely to offer more equitable care to women patients
18:32 Our Senate bill will be also to allocate dollars so that doctors can go back and be you know further
18:39 Educated and retooled because I was horrified when I found out that in medical school
18:43 Doctors only spent there's only one chapter on the menopausal body
18:47 And this is something every single woman will face if they're lucky enough to live that long and there's one chapter and most of them
18:55 Don't even remember it you know so that's also what our bill will be for to get doctors
18:59 Further educated so they can be retooled. I think that's critically important
19:04 I was going to say that you know this gas slicing gas lighting Dan that you mentioned
19:09 It does seem to be an embedded issue
19:11 And I was Marlena if you want to comment on whether you've seen since your experience has the needle moved at all you know
19:18 We're in 2024 and it's still astounding that we're hearing doctors tell women these things I mean I
19:25 Wish it was moving a little more than it has I did get a
19:29 tape from a medical student who had a hyperemesis and
19:35 Her professor who was a female doctor ob-gyn professor
19:40 Told her and told the class so this is the whole next generation of doctors
19:46 That when patients are hospitalized with hyperemesis. It's usually because there's something going on at home or
19:52 They just don't want to get better
19:55 That's really what she taught the students
19:59 So there's a whole next generation of doctors that are learning this so we really need a re-education
20:05 That's really important one thing that I think we've seen that helps sometimes is when there's a new treatment
20:10 That's introduced then people understand that what they actually saw is you know maybe the patient's fault is actually disease
20:17 Historically this happened with diseases like epilepsy or even tuberculosis
20:21 Where was blamed on the patient more recently it was depression where doctors would say you know chin up think positive thoughts
20:28 Until we had medicines for the disease and then doctors changed today
20:33 We're seeing it in front of our eyes happen with obesity where we used to blame the patient as soon as there's medicines available
20:38 Doctors start understanding that it's really a disease that that can be treated well
20:43 And my doctor also told me when I told him I've diagnosed myself. I realize I'm in perimenopause
20:48 He said just deal with it like you know white knuckle it. It's only gonna last five ten years if you're not lucky
20:55 Okay
20:58 Not good enough not good enough good enough for sure so in closing
21:03 And this is one of the things that I love about time 100 is I get to do this
21:08 Hallie and Marlena you have here sitting right next to you Dan who is at a major pharmaceutical company
21:14 He's thought of that. He's a he's male. I volunteered for this yes
21:20 But he's also pretty influential from what I hear at the company
21:26 So here's your opportunity you have his ear. What advice would you give him about?
21:30 Finding ways to prioritize and ensure that women's voices are heard
21:35 I know believe them when they tell you something's wrong, and they're not making it up. I think you do
21:43 And I mean
21:48 You have a drug actually that would help for
21:53 Epilepsy that you guys are not it's kind of shelved you just told me so I have a very specific request
22:00 I'm ready to test it to desensitize women. I'm sure we'll find a way to work together I
22:07 Think you just got your marching orders Dan
22:11 Thank you well Hallie Dan Marlena, thank you very much for joining us in this dialogue. Thank you
22:19 Thank you for having me.
22:21 [APPLAUSE]