Tell me why only 19% of clinical trial participants today are female?

Gulf News

Most of what we have today in medicine has been designed for and tested on white males  Sophie: Women were excluded from clinical trials globally until 1993  Scientists didn’t want to include women in trials to avoid impacting female fertility  It takes 4 times longer to diagnose women with the same chronic diseases as men  Sophie says It’s important to address these systemic gender and racial biases for more accurate results  See more videos at https://gulfnews.com/videos Read more Gulf News stories here: https://bit.ly/2HLJ2km  Subscribe to Gulf News on YouTube and watch more of our videos: https://www.youtube.com/user/GulfNewsTV  #UAEnews #podcast #fertility

Transcript

00:00As you rightly say, the perception is that, whether consciously or unconsciously,

00:06that women are responsible for the majority of infertility cases, but actually the opposite is

00:10true. Globally, 35 to 45 percent of infertility cases are male only. About 30 percent are female

00:18only and the rest are a combination of the two. And actually, if you look at the fertility of

00:24the human population as a whole, it's the the rapidly declining fertility of men that is going

00:30to be the biggest issue. So the global sperm count has halved in the past 30 years. It's dropped by

00:3650 percent and it's trending to zero by 2040, which means that by 2040 the majority of couples

00:44will struggle to conceive naturally because the sperm count on average across the male population

00:49will be zero. And the reason for this is... All right. Welcome back. This is Tell Me Why.

01:00I'm Maria Botros. And, you know, we always enjoy discussing health and well-being,

01:08women's health specifically. And today's guest is Sophie Smith, who is the founder and CEO of

01:14NAPTA Health. And today she's going to be talking to us about anything and everything

01:20related to a woman's health, from the insurance policies that companies have to offer to menopause,

01:26puberty. We're going to try to discuss as much as we can today. And obviously, if there's something

01:32that we don't necessarily have time for, we will always bring her back if she has the time for us.

01:38She has the time for you. Okay, that's great. Sophie, how are you? I'm very well. Thank you

01:43for having me, Maria. Yeah, no, it's an absolute pleasure. Before we get started, I want you to tell

01:48us, me and the audience, about yourself. So are you a doctor or did your concept of NAPTA Health

01:56just come out of the fact that you are a woman and you noticed some gaps and you wanted to fill

02:01those gaps? That is precisely where the concept of NAPTA came from. Maybe to give a little bit

02:07more context. So I have parents who are doctors. My father, until recently, was the National

02:13Clinical Director of Diagnostics for the NHS. So very senior in diagnostics. Without a doubt,

02:19that's where my interest in diagnosis comes from. But I have a business and technology background.

02:26And before I founded NAPTA, I'd actually gone through the process after leaving Accenture in

02:312014 of setting up a number of businesses, all in the impact space in quite quick succession.

02:37So NAPTA was actually my fifth company in four years. That was not about setting up a lot of

02:41companies. It was about trying to find the thing that I really cared about and the business that

02:46was right for me. So we moved here in September 2016. I was newly married. I was pregnant.

02:53I had just set up a company in Sierra Leone that does waste plastics to roads.

02:58And I moved here and I thought, I need to do something locally. Sierra Leone is 24 hours one

03:05way from the UAE. Yeah. It's not a particularly pregnancy or new baby friendly place. And I

03:13thought, yeah, I want to do something that is really relevant and impactful here. And I went

03:18to speak at a conference in Kuwait on diabetes and got chatting to the organizer, not about

03:23diabetes, but about the fact that I was pregnant, which he found unusually fascinating. Okay. And

03:29about a month later, he sent me a whole lot of stats on women's health in the region and said,

03:34do you want to do something in women's health together? And I still remember very vividly

03:39receiving this presentation and these statistics. I was sitting in the impact hub in Succarbaha.

03:45And the stats were, the stats were obviously poor. Okay. 80% of breast cancer is diagnosed

03:53at stage four, which has a 27% five year survival rate versus diagnosis at stages one and two.

04:00It's the opposite way round in the UK, 80% of diagnosis stages one and two, 40% of women in

04:06the MENA region were not attending a single antenatal appointment, which meant that, you

04:11know, if you were at risk for things like gestational diabetes, preterm birth, preeclampsia,

04:16that wasn't being picked up. A lot of women were miscarrying where they didn't have to,

04:22where there was no reason for them to miscarry. A lot of taboos, a lot of stigma. I mean,

04:27we're talking, we're talking 2016, pre COVID, pre a lot of the, a lot of the movement that we've

04:34seen in the region over the past few years. And, and I, as soon as I saw this deck, I thought,

04:41yes, this is the company that I want to run. And that I hope I will be running actually for

04:45the next 30 years. I asked for a bit of time to have my baby, hand of my existing business

04:51interest. In the end, we started now to the day my son was due. So 21st of March, 2017.

04:57Amazing. That's a nice start anyway. But I just want to go back to the fact that you were saying,

05:03you know, the statistics were shocking. And you found that the research was was kind of,

05:08I don't want to say weak, but it was there wasn't enough, let's say at the time. Why do you think

05:13that was? Why do you think that was the case? So it was one of these things that the more you dug

05:17into it, kind of the more shocking the statistics were, and the more gaping the whole women were

05:24largely excluded from clinical trials globally until 1993. Okay. And you could argue that this

05:31was done out of a sense of sort of fiduciary and responsibility towards women. They didn't want to

05:39impact female fertility by including them in trials for things that could affect that. But

05:44the result was that most of what we have in medicine still today was designed for and tested

05:51on predominantly white men, male, yeah, male figures. And still today, only 19% of clinical

05:57trial participants are female. So there's a big gap in and there's that in terms of gender equity

06:03in healthcare. Women are four times, it takes four times longer to diagnose women with the same

06:08chronic diseases as men, despite the fact that they're twice as likely to see a doctor in the

06:13first place. There are a lot of other stats that highlight the gender disparities. And then if you

06:19if you build on top of that, the fact that 92% of trials are held in the US and Europe,

06:25and the remaining 8% are mostly held in the Far East, where they have to be demographically

06:30representative. Only a tiny percentage of the of the of the 19% of clinical trial participants

06:37that are female of Middle Eastern, African and South Asian origin. And you see the result of this

06:44even more in the health outcomes. So if you are a woman of African origin in the United States,

06:49you are four times as likely to die during pregnancy and childbirth than a white Caucasian

06:54woman. If you were a woman of Pakistani origin, you were three times more likely to die with COVID

07:01than a white Caucasian woman. And the only way that you address these systemic gender and racial

07:07biases is not by building in the US or building in the UK or building in Europe or building in

07:14the Far East where you would have to be demographically representative. It's by building

07:19things by and for women here, where the minority populations of the US are the majority.

07:26Of course, yeah. So you mentioned this, and this was actually my next question, the systemic

07:30gender and racial biases. I know that part of what you're doing with NAPTA is you're trying

07:37to tackle these biases, and you're trying to sort of counter these biases. So can you tell us a bit

07:42more, like, what are some other biases that we spoke about this before the show, actually, we

07:46were speaking about infertility and we I would because we just had a guest recently who came in

07:51and talked about infertility. And he was saying, one of the main misconceptions is that people

07:56think when they hear infertility, they automatically think women, they automatically think that it's

08:01in the woman rather than also shared by the man. So can you tell us some more biases and tell us

08:07about the statistics when it comes to infertility? So infertility is a really good example. Actually,

08:13as you rightly say, the perception is that whether consciously or unconsciously,

08:19that women are responsible for the majority of infertility cases, but actually the opposite is

08:23true. Globally, 35 to 45% of infertility cases are male only about 30% of female only and the

08:32rest are a combination of the two. And actually, if you look at the fertility of the human population

08:38as a whole, it's the rapidly declining fertility of men that is going to be the biggest issue.

08:45So the global sperm count has halved in the past 30 years, it's dropped by 50%.

08:50And it's trending to zero by 2040, which means that by 2040, the majority of couples will

08:57struggle to conceive naturally, because the sperm count on average across the male population will

09:02be zero. And the reason for this is environmental factors, sedentary lifestyle, and then the growing

09:09prevalence of chronic diseases, chronic diseases that could be everything from diabetes to

09:15it's much earlier precursor insulin resistance.

09:18Of course, insulin resistance. It's funny that you mentioned that because a lot of people now

09:22are realizing that they are insulin resistant because of their lifestyle, their diet or whatnot.

09:30Okay, what are other biases that you are trying to tackle? I mean, apart from infertility,

09:35what are the what are other gender or racial biases that you're trying to tackle?

09:39Gosh, there are so many.

09:41I mean, mention maybe like the top three or, or just any three.

09:45I think biases that really prevent women from accessing the same opportunities, perhaps as

09:53their male counterparts, are those around postpartum recovery and, and, and perimenopause.

10:01So in the UAE at the moment, if you apply for an individual insurance premium,

10:08perimenopause, or if you put down menopause is categorized as a pre existing condition.

10:14Oh, and so your insurance premium would automatically go up. If you said you were

10:19perimenopausal, the minimum you would be quoted would be about 35,000 dirham.

10:24Wow.

10:25Per annum. At the moment, there is not. So insurance will not cover hormone replacement

10:34therapy, or in fact, any of the therapies that are commonly recommended for women going

10:39through perimenopause. So all of the things that you might need to support you with a 35

10:46plus symptoms that you experienced going through menopause are currently not supported at all

10:52by the existing healthcare ecosystem from a financial perspective. So that's an example

10:58of a bias. And again, if we think about the ramifications of this for women in the workforce,

11:05you know, a lot of companies now have set very strongly worded D&I mandates for themselves.

11:10They're going to try and attract and retain more female talent. They're going to try and get more

11:14women to senior leadership positions. They want more women on the board. What do you think most

11:18of those women are going through when they're trying to push for those senior leadership and

11:22board level positions? Perimenopause. So if you don't have adequate support for women at that

11:27point in their lives, and today the healthcare ecosystem, you can have the best healthcare

11:32insurance, but ultimately that health insurance is a gateway to the established healthcare ecosystem.

11:37If that system is not set up to support women through perimenopause, then they will not be

11:42supported. Another good bias is potentially around postpartum rehabilitation. So there's this

11:51assumption that, um, uh, kind of women need to bounce back after giving birth. And there's now

11:59a counter-cultural movement that says women don't need to bounce back. And that's because when we

12:03think about bouncing back, what we're predominantly thinking about is how women look, but actually

12:08bouncing back physically, mentally for women to get to that place where they really feel like

12:14themselves again is really important because you need to be strong physically, mentally,

12:22nutritionally to, to deal with this, this, this life that you have created. You need to be physically

12:28strong so that you, and rehabilitated so that you don't end up with things like incontinence and

12:34prolapse, particularly as you, as you enter perimenopause where hormonal changes may exacerbate

12:40these things. Um, so there is a need for women to rehabilitate themselves postpartum, but not

12:46in the way that maybe, um, the media portrays. And for women to understand how that happens

12:53and to access care for it is still today, it's very difficult. Um, you cannot submit a claim

13:01with most insurance providers for pelvic floor rehabilitation and have it covered by insurance.

13:07Insurance will cover a claim for back pain, but they won't. And so, so for the physiotherapy to

13:12rehabilitate back pain, but if you have a weakened pelvic floor causing incontinence, or you have,

13:18um, abdominal muscle separation that wouldn't be covered by insurance. So most doctors today,

13:23if they want to help women physically rehabilitate will submit a claim for back pain. Of course. Um,

13:30but that's another bias that exists. So this, this idea that, um, either bouncing back is essential

13:36or counter-culturally bouncing back is bad, but the idea that we need to support women and come

13:42getting back to the, a good place from a physical and a mental perspective is kind of

13:46not discussed in the right way and not enabled by the system. Right. Okay. So this is actually a good

13:51segue into the next question. And it relates back to a point that you were just speaking about.

13:56Um, why, so tell me why, uh, why do you think companies need to rethink these health services

14:03that they're offering their, their women or not health services, but the, the insurance policies

14:09that they're offering women in the company? And I feel like, are they matching it? You were saying,

14:15you know, a lot of these companies are saying, oh, we want more, more women in leadership positions.

14:19We want more women to grow. They want to meet that. They want to check that box, but are you

14:24living up to that promise or that, that I don't know what to call it, but are you living up to

14:29that expectation that women have when they come into your company? That is a lot of questions.

14:35Sorry. It's a loaded question. A question loaded with many other questions. So, uh,

14:43are companies living up to expectations? What is stopping companies from providing women with the

14:48care they need? Okay. Um, I'll, I'll take a step back actually. Um, I think one of the biggest

14:54problems is that no company wants to admit that it is not doing the right thing by its employees.

14:59Of course. And no company wants to admit that it is offering fundamentally different services and

15:04care to its men versus its women. Um, and that's one of the challenges is explaining to companies,

15:12we know you want to do the best by your employees. This, this bias that we're talking about,

15:17it's not with you. It's with the established healthcare ecosystem. And that has a long legacy

15:22that actually has nothing to do with the healthcare providers here and everything to do with how, um,

15:29clinical trials were conducted, the process of including people in clinical trials, like the way

15:33that that was set up. Right. So you need to make it, you're not there to accuse anybody. What we're

15:39there to do is to say, we know you have this mandate that you want to hit. And it's a good

15:44thing because diversity in companies increases profitability. That's been proven. Um, and these,

15:51these are the ways that these are the things you're going to have to acknowledge. And this is

15:54a way we can address them. Um, why is traditional healthcare not meeting the needs of women? We've

16:00already covered some of that, some of the systemic gender, racial biases in healthcare, but why

16:04fundamentally is it not addressing the needs of women? It's because traditional healthcare was

16:09not designed to treat chronic diseases. And today, chronic diseases are the majority of the

16:15disease burden and it's increasing. When, when hospitals, the likes of which we see today were

16:21built in the early 1900s, 85% of the things that they were there to treat were acute diseases,

16:30pneumonia, broken limbs, um, a lot of respiratory diseases, a lot of infectious diseases that don't

16:36exist anymore. Yeah. They're like, they need a one-time treatment and that's it. Exactly. So you

16:41diagnose the disease, you treat the disease, it goes away. And so just, and that's it. Yeah.

16:46Unfortunately today, um, uh, acute diseases only account, or fortunately only account for 30%,

16:5470% of the disease burden is chronic. It doesn't matter how much you, uh, intervene or prescribe

17:00for a chronic disease because at the heart of a chronic disease is lifestyle factors. Of course,

17:05disease doesn't go away. So the person keeps coming back. They take more drugs,

17:09they have more interventions, they become dependent on very expensive things that were

17:15designed to be used as a one-off and then not again, hopefully for years. Um, and so you've

17:22got a traditional healthcare system that is not really built to support the majority of the disease

17:26burden. And in women that includes things like polycystic ovary syndrome, endometriosis,

17:32ulcerative colitis, any number of different gut issues, autoimmune diseases, as well as the,

17:38the other, um, kind of, uh, non-gender specific diseases that you might, um, that you might think

17:44of automatically when you think chronic disease. Um, but it also means that, um, the health

17:52insurance, which is there to act as a gateway to traditional healthcare is also becoming untenable

17:59for a lot of the, for the people who purchase it, whether that's companies or individuals.

18:03And that's because health insurance and the clues in the name was meant to be there for emergencies

18:08only. You're not meant to use it as a kind of a bedrock for your care. It's not meant to be the

18:15thing that you use to keep you well or to prevent you from becoming accidentally unwell. It's there

18:21if in an emergency, you need to access something that can help you with that emergency. Okay. And

18:30so what we're seeing now is because, um, historically there haven't been alternatives,

18:36health insurance is just going up and up. It's like, okay, you want physio, you want support

18:40for mental health. You want support for chronic diseases. Sure. We can support this, but then it's

18:44going to cost you as an individual, uh, 90,000 Durham per annum. We had a woman in one of the

18:52groups the other day who was asking for help because she had put ulcerative colitis as a

18:58preexisting condition on her application. At the minimum, she was quoted for a year was 93,000

19:05Durham. Wow. That's, that's a lot. It's a huge amount. Where do you get 93,000 Durham from?

19:12Yeah. Along with your other expenses, expenses. Um, and then, and so for individuals, the, the,

19:21the burden of chronic diseases is being felt much more prominently, much more immediately. It's

19:27becoming an issue. A lot of people just aren't buying health insurance for themselves now,

19:31especially, especially freelancers, sometimes for two, three, four years, basically as long

19:36as they can get away with it. Um, for companies, um, where you have a group premium, you don't need

19:42to declare chronic diseases upfront. They don't ask about chronic diseases, but if those chronic

19:49diseases result in claims against the premium, the premium goes up by 10, 20, 50, 80% the following

19:57year. And then every year it goes up. So you have a population of 500 employees. Let's say you're

20:04fortunate enough to be paying say 2000 Durham per head per annum. That's a million Durham of premium.

20:09You get one stage four cancer diagnosis. We already talked about the fact that 80% of breast cancers,

20:15for example, are diagnosed at stage four. Yeah. That's 400 to 600,000 Durham's worth of treatment.

20:20Your premium will go up by a minimum of 50% the following year. Oh my goodness. Wow. See, these

20:26are things you would never think of, like as an employee, I would never know that. I would never

20:30know any of that. No. And so, and imagine you're, you're, so if you're, if you have fewer than 150

20:35employees, you don't have to declare your claims history the following year. So if you have fewer

20:40than 150 employees, you could just rotate through insurance providers and be quoted roughly the same

20:46thing every year. Okay. If you have more than 150 employees, the insurance providers can see your

20:51claims history. And so you can't escape that like reliable increase in premium. Right, right, right.

20:57But imagine you have 151 employees. You've just passed the 150 mark and unbeknownst to you,

21:04there's somebody within your organization who is, who's has a history of fibroids and polyps and,

21:10you know, estrogen dominance that is growing these things and they found a lump and they don't know

21:15about it and there isn't the support for it and it's not being spoken about in the workplace and

21:19they're worried that they'll get fired if they bring it up because cancer treatment is expensive

21:24and it's time consuming and. And that's time off from work and then so you're. Exactly. Of course,

21:30of course, yeah. And you know, we're, we're obviously in breast cancer awareness at the

21:36month at the moment and thinking about it and talking about it a lot and that's why it's a

21:39good example to give. But there are hundreds of chronic diseases. Yeah. For which this assessment

21:46is also relevant. And if companies aren't switched on to the fact that an unhealthy workforce

21:54could result in, in your, in your insurance premium doubling the following year,

22:01that's dangerous for companies. It's, it's dangerous for the ecosystem. You know, there's a,

22:07we, we know that chronic diseases are increasing to rise, continuing to rise. If they aren't

22:13managed effectively within, within the ecosystem by companies who are the primary payers for

22:20healthcare at some point, it means that a lot of those companies will become unsustainable.

22:25Yeah, of course. And, and as you said, an unhealthy environment or work environment

22:30or an unhealthy workforce leads to much greater losses and not just financially. It means.

22:35Yeah. Turnover globally, they reckon that six to 7% of payroll goes towards poorly managed

22:43chronic conditions in a workforce. But yeah, I mean, and this is like, we haven't even got on

22:49at this particular point to talking about the actual benefits for your workforce. If you

22:53effectively manage their health, the fact that they then, you know let's say you're a couple

22:59that is wanting to have a baby per IVF cycle, you will take on average as a woman, 8.7 days of sick

23:07leave. And a lot of companies, a lot of couples will go through multiple rounds of IVF to conceive.

23:12If you could conceive naturally and then have a low risk pregnancy, the amount of time you took

23:17off work firstly would be much lower. How present you were when you were at work would be much

23:25higher because you're not worrying about all of these appointments and, and the fact that you're

23:30navigating a high risk pregnancy. There's so much benefit associated with really investing

23:37in your people's health. We had a, I was reminded very palpably of this the other day, actually,

23:45we had a new dietician join us who's also a new mother. And it became obvious after a few days

23:52that she was really struggling leaving her baby at home. And I hope she won't mind me telling

23:57this story. Beautiful, beautiful woman and a very gorgeous baby. Anyway, and, and you could see it

24:05was really affecting her. And we have a, so the, the clinic that we have in Jumeirah, we have an

24:11indoor outdoor play area for children. All of the rooms have toys in them, but we also have a full

24:16time caretaker who was there to look after children that come in with their parents. Right. And we said,

24:24please just bring your baby to work. Have her here. Yeah. You don't have to leave her like bring her

24:30with you every day. You know, it'd be an honor and a pleasure for us to have her here on site with us.

24:35And so now she does, and she's much happier. Oh, that's so sweet. Surprise, surprise. Yes,

24:41exactly. And it's such a, she has her, you know, her nanny comes with her. It's such a little thing.

24:47It's such an easy thing. It makes such a big difference for her. And, you know, I've got four

24:52children. My youngest is five months old. I take her with me to most things. Okay. I'd be heartbroken,

24:58especially in the early stages. If, if I had to leave her behind all the time, if I felt like I

25:04was missing things, it doesn't take much to make women's lives a lot easier. Not really. Exactly.

25:12So, yeah. And it shouldn't be a punishment. I'm sorry. Like, I'm just going to say it because

25:17a lot of women, I mean, at this day and age, it doesn't make sense for one of the two to work.

25:24Where it's a fast paced life. It's an expensive life that we live these days. I'm not just talking

25:29about the UA, I'm talking about in general, like in, in worldwide, it makes sense for both people

25:35to work. So a woman shouldn't be punished because she's working and because she wants to. And even

25:40if it's not for financial reasons, what if a woman wants to feel accomplished or she enjoys her job?

25:45Why shouldn't she enjoy it and enjoy the company of her child and not feel guilty about leaving

25:50her child behind or not giving them the attention and care that they deserve at such a young age?

25:56It's upsetting that, you know, when you were talking about it, it's upsetting that a woman

26:01would feel like, you know, she feels guilty for leaving her child behind. It's, it's heartbreaking.

26:06It is. And it's funny that you use the word punish. So the woman who did the, a lot of the

26:11initial research on the wage gap in the US has just been awarded the Nobel Peace Prize.

26:14Yes.

26:16And she, she talks about this. She talks about the fact that

26:21uh, women and mothers in particular are punished financially for having children,

26:26whereas fathers financially are rewarded. So mothers earn less than their male counterparts.

26:33Fathers earn, than their female and male counterparts.

26:36Yes.

26:36Fathers earn more than their female and male counterparts.

26:40Yes.

26:40So is actually the case that mothers are punished for having children again,

26:47where their male counterparts are.

26:49Rewarded for it.

26:50Yeah, absolutely.

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