Trials with Maya Z

Maya TrialHub (00:00)
Hello everyone. I'm Maya with trials with Maya Z. And I'm here today with Estelle Jobson a patient advocate that I met a few months ago. She was on stage on one of the top patient engagement events, at least in Europe. A patient fellow like very much associated with EUPATI and trying to

like bring her expertise and her experience towards helping others. One thing that was very, very, I would say exciting to me is when I met Estelle was how well she communicates the problems of patients. And one thing that, the other thing that really, really excited me before inviting Estelle to join me in a mini conversation on my podcast was the passion that she has for women's health.

and most specifically fighting endometriosis. A disease that I know for many friends and many people in general is like very serious and sometimes under researched. Estelle, thank you so much. Welcome to the trials with Maya Z And if you want, you can share a few words about your background first.

Estelle Jobson (01:15)
Thanks for having me, Maya. I'm happy to be here today. Yes, I mean, you summed me up nicely. I'm a patient advocate. My disease is endometriosis and I'm trained by EUPATI the European Patients Academy. And I like to call myself or us patient advocates a Tinker, which means we kind of go up and uphill, down dale. We meet people along the way. We share our expertise and we learn as we go.

And it's not a very clear path ever, but we keep going and meeting interesting people. So like we met, so I'm really happy to share some of my knowledge about endometriosis and the situation in research and trials for this disease area.

Maya TrialHub (02:00)
Thank you Estelle. Let's first start with women's health in general. You actually, when we met last time, you mentioned some really shocking percentages for how much funding is being spent on women's health research. So can you just share that with my audience?

Estelle Jobson (02:23)
Yeah, it's quite shocking as you say. I mean, I've got two statistics. The one is that closing the gender health gap starts with investing in research on the female body, yet only 4 % of healthcare R &D spending in the US goes towards women's health. That's one statistic, 4%. And the other one is that only 1 % of global healthcare R &D and innovation goes to female specific conditions beyond cancer.

So we're somewhere between 1 and 4%, which is pretty dismal given that we are also 51 % of the population. And we earn 40 % of GDP, which is interesting.

Maya TrialHub (03:05)
Yeah. Interesting perspective that you mentioned the GDP, but yes, make sense. Like let's say that we're a good market. but why do you think this is the case? Like what's your, how do you explain that to yourself?

Estelle Jobson (03:14)
you would say.

I mean, this is a sad state of affairs. I think it taps into quite topical matters that you're reading more and more about, the gaslighting, medical gaslighting that women are subjected to, that when we come with symptoms, we're told, you're just anxious and, you know, put up with it, there's nothing wrong with you. We're patronized in that way.

Maya TrialHub (03:40)
you

Estelle Jobson (03:46)
I think a lot of it also goes back to the general gender bias in medicines R &D, such as, I mean, right from in the lab where they're working on the male mouse because they don't want hormones, you know, interrupting the R &D process. The whole process has a male bias in terms of the male cells, the male mice, the male trial participants. Okay, obviously when they're testing a drug,

Maya TrialHub (04:12)
You

Estelle Jobson (04:16)
for a woman's disease, the participants will be women, assigned female at birth. I'm going to try to get my language right. But it's really, I think just the whole area of R &D suffers from a male bias. Yeah.

Maya TrialHub (04:36)
I guess you were more complicated. You're absolutely to the point when saying this with the hormones. had the again another like interview with the Parkinson's disease patient advocate and she she's actually in like research both her her husband and her mom died of Parkinson's unfortunately and she said it's just super more complicated like because she saw her mom and also her husband male and female

going through the same disease. And she was like, well, with women, it is different. Actually, she gave me some ridiculous numbers on misdiagnosed and underdiagnosed women patients, just because exactly what you said, the first thing is that, she has her period or like for whatever reason. Sometimes this is really a big burden and also a barrier for even diagnosed is not only treatment.

Estelle Jobson (05:29)
Hmm.

Yeah.

Maya TrialHub (05:34)
What about endometriosis still? Like what is the status of endometriosis today? How much is being researched? And is there like a established standard of care for this disease?

Estelle Jobson (05:45)
We do have a pretty long diagnosis, somewhere between six and 12 years, is the typically cited figure. It seems to be dropping with public awareness, so that is good news. And more and more women are kind of self -diagnosing with information and going to healthcare professionals saying, think I have this. And so that's helping us, we're helping ourselves. So that's the one thing, the diagnosis, but that's the same as if you have a rare disease, which I mean...

Endometriosis is not a rare disease, so we shouldn't have such a long time to diagnosis. So that's the one point. What is in terms of standard of care for endometriosis, the kind of typical things are painkillers, oral contraception, hormones, which is typically estrogen suppression, GNRH agonists and antagonists, ultimately some kind of

weaker or stronger form of induced menopause. So that's our standard of care and surgery. Surgery is a very important one because it can be done very well or very badly. But I want to just read in terms of standard of care. I want to read a little quote I got from a woman on a online support group and

Maya TrialHub (06:49)
Mmm.

Mm

Estelle Jobson (07:08)
she has had the standard of care. She's in quite a good position because she has job, she has private health care, she has a husband she likes and she has achieved she has achieved her fertility goals. So let's listen to what she says and her pain is kind of under control but let's listen she says any ladies out there who have had 10 laparoscopies one ablation because you know we get tired

Maya TrialHub (07:26)
Okay.

Estelle Jobson (07:35)
then find precancerous cells on the cervix but ding ding ding and more endo so I got a hysterectomy. Let's move on it's been two years in these two years I already went for intestinal endometriosis surgery is there anyone to talk to? It's back obviously but I just started a job because my husband and kids need two incomes and when the new year strikes and medical aid is regenerated I can get help but what now?

I just had that pain that feels like you're literally giving birth and I'm crying. I've been handling pain well, but is there a friend in my shoes? Whom can I talk to? I'm on sleeping aids and anxiety meds because I can't sleep, not just because of the pain, literally everything. My feelings, my hormones, my anxiety and depression. I don't know. Any friend out there? Listen, please don't recommend hormones. It has done enough to my marriage and I'm done.

I'm scared. I sound terrible. I'm crying so much I can't even type properly. So this is very moving but it's not entirely uncommon and this is a woman who's had standard of care. So clearly standard of care is not hitting the spot for us. So what I call for is researchers to put aside these quite

Maya TrialHub (08:40)
Mmm.

Estelle Jobson (08:55)
traditional views on endometriosis, on what the disease is, on how it works, and to come with fresh eyes, to think out of the box, to explore new ideas, and to come to the patient community also to look for clues as to what those may be. There is more and more research on endometriosis, but we still, like this is still the reality, the standard of care for us.

Maya TrialHub (09:23)
Well, why isn't there progress if there is research on endometriosis? And if from what I see, standard of care is not something that is like solving the main issues for women, why don't we have something better? Like what stops this progress?

Estelle Jobson (09:43)
Part of the problem, I think, with endometriosis is the disease definition, that it is obsolete and it is incorrect and it is repeated over and over again. It's almost like fake news. You read it, you read it, you read it, you cite it, you cite it, you cite it, but it's still wrong. It's always wrong. And the current, this prevailing definition focuses very much on the symptom of pain with menstruation.

Maya TrialHub (09:51)
Okay.

Estelle Jobson (10:12)
and this link which is fallacious is to the endometrial tissue. Endometriosis is not endometrial tissue. The name in itself is even wrong. So we are so kind of blinded by this wrong definition, by this wrong name, the public awareness attaches to this wrong definition. So I think that's part of it.

Maya TrialHub (10:23)
No.

Estelle Jobson (10:37)
people keep coming back to endometriosis as a menstruation uterus related disease, which it's not. It's a systemic body wise, inflammatory chronic condition. And I think it would help researchers to really look at it with fresh eyes and to ask patients as well. We always say that, ask us what...

what our questions are because our questions will take you to quite interesting suggestions.

Maya TrialHub (11:14)
Hmm, interesting. Actually, since standard of care is not that attractive, let's put it that way, are patients with endometriosis interested in clinical trials? Like, do they find them as a good option? Alternative.

Estelle Jobson (11:30)
Yes, look, there are a lot of women with endometriosis who cannot get specialist care. So they're pretty desperate because there are so few specialists in the world. I mean, there's literally like a few hundred global, like globally. Poor women in poorly resourced settings, they can't get that. So I would say for them trials could be an option.

Maya TrialHub (11:37)
Okay.

Yeah

wow.

Estelle Jobson (11:59)
but we are also skeptical of trials that are just sort of recycling some version of induced menopause and we are also deeply skeptical of new treatments that are basically recycled treatments and that you will see in the online support groups that the you know the members are saying hey watch out this is the same old thing we've seen this before it's just got a new name and a fancy new you know packaging

Maya TrialHub (12:14)
you

Estelle Jobson (12:29)
Trials could be useful but we don't want to see the same old same old. We need the outcomes of the trials also to be different.

Maya TrialHub (12:38)
Thank you.

So tell me more, like what type of outcomes do you actually expect? What are the outcomes that are being traditionally expected and how they differentiate from the outcomes that say endometriosis patients would expect?

Estelle Jobson (13:01)
As a precursor to this answer I would like to say the prevailing symptom of endometriosis is pain, not always but often and the pain you know it's very debilitating, it's very all -consuming. I like to say it's like having a siren in your ear. If you have this pain all the time you are kind of... it's like you can't hear anything else, you can't see anything else. If you can switch it off somehow

then you can also start to see what's the rest of my life looking alive? How are my other symptoms? What else is going on in my body? So, okay, so the trials are focusing on pain reduction, some, you know, quality of life forms that are standardized and the like. The trials focus a lot on fertility outcomes and...

and they often will measure lesions of endometriosis. Okay so that's all good and well but I mean what the patients are asking for is or complaining of or reporting is a longer list of symptoms that are all quite debilitating. mean chronic pain of course which is not only menstrual it can be all the time. Dysmenorrhea so that's period pain.

Maya TrialHub (14:14)
you

Mmm.

Estelle Jobson (14:27)
during around the cycle, pain with ovulation, dyspareunia, which is pain with intercourse, dysketia, that means pain with bowel movements, urinary symptoms. This is very important because it can be very debilitating and they can also lead to kidney damage. There are women who lose a kidney to endometriosis because the endometriosis blocks up the ureters and the urine flow is not...

Maya TrialHub (14:39)
Hmm.

Okay.

Estelle Jobson (14:57)
good. So there's that. Then we have this chronic fatigue which is also very debilitating and digestive issues, bloating like you can literally go from looking normal to looking like nine months pregnant in no time at all and yeah food sensitivities that kind of thing and then of course the psychological impact of all of this.

depression, anxiety and the like. And then, I mean, there's another one which you will never see measured in a trial, that is like lower back, hip, leg pain. Because that would be also like there's certain jobs you cannot manage if you have constant lower back, hip and leg pain, which can also feel like sciatica. It can be, in fact, endometriosis sciatica.

Maya TrialHub (15:37)
Hmm, interesting.

Estelle Jobson (15:55)
So that's just like some of the things that we are living with and wanting to have addressed. And yet the trial would have a much smaller, shorter list of outcomes.

Maya TrialHub (15:57)
Yeah

And still you being a patient advocate, have you been a part of actually a focus group to actually express and be vocal about these things? Like focus group, let's say on let's say in any clinical trial, clinical trial design, or have you seen other colleagues of yours in the same space being asked about this?

Estelle Jobson (16:27)
Hmm.

I've been involved in some focus groups and I've taken part in some surveys and the like. I've seen work that's been done that I wasn't necessarily involved in and good work. mean, like the James Linder Alliance held in 2016 held a priority setting partnership on endometriosis. It's quite an interesting one because they put out a call for patients and carers and the like to come forward with questions.

They collected 4 ,800 questions from 2 ,000 participants and then they sorted them into, you know, they did their methodology with that. And what I found quite interesting was to look in the out of scope section where they didn't fit under clear headings. I thought that's kind of like where the clues are, where the patients are asking.

quite interesting questions and they themselves are trying to join the dots between our disease and other comorbidities or other similar type of conditions or yeah bringing up symptoms that don't appear in the typical trial outcomes.

Maya TrialHub (17:32)
Hmm.

So even when, let's say, these different side effects and these different challenges of disease are being expressed, that doesn't mean that this will be taken into consideration in the clinical trials. wonder if you, I mean, at least that's how I understand what you're saying, which maybe there is a reason for that. doesn't like to me, it doesn't make a lot of sense, but I'm pretty sure there is a logical explanation. I wonder still because

you've seen quite a lot of clinical trials. And I wonder, can you give me an example, if we go the black and white approach, can you give me an example of, let's say, a horrible clinical trial that you think, how did they even came up with this? And who would actually join such a clinical trial?

Estelle Jobson (18:19)
Mmm.

Mmm.

I can. Yeah, I look, I don't know about every single trial that's out there, you know, maybe there's something amazing that I've missed, but I, are a couple that I, that I was looking at recently that I thought were, were quite kind of interesting, good, yeah, the two extremes, let's say. The good ones are looking at new approaches to the illness, new treatments that are not just plain old, you know, estrogen suppression. Okay. So that's...

that I can talk a bit more about. But I mean, I did hear about one trial which I felt I was very concerned about and it was looking at, I mean, the goal of the trial was to ascertain whether surgery is useful for patients, okay? And whether it improves the symptoms, quality of life, it was looking specifically at...

Maya TrialHub (19:19)
Hmm.

Estelle Jobson (19:29)
superficial peritoneal endometriosis, which is one type. And there were two control arms, was surgery, real surgery, where the surgeons went in and removed superficial peritoneal endometriosis. And the other one where they did sham surgery. So...

they open up the patients and they looked and then they closed them up and they didn't tell them what happened. Okay neither, right, so it was blind, blinded and they were recruiting yeah 400 women for this trial and when I saw that I was just very very disturbed by that for several reasons. First of all surgery, we know surgery helps, I think we know that already but

Maya TrialHub (19:56)
I don't, yeah.

Yeah.

Estelle Jobson (20:23)
it's got to be excellent surgery. So running 400 women through a trial where somebody hopes them up and you know this is not expert surgery it's something else and I don't think that is going to help those women necessarily. And I find that I just felt like deeply concerned about the whole aspect of informed consent for that. How can a woman really really

confirm that she's okay with that. Surgery is a very big psychological burden. There are risks and we also know that repeat surgery can cause damage. causes adhesions, causes scar tissue, there's risk of perforation of organs, unintentional, there's risk of sepsis. It's just like, I just found that seriously problematic for me. Yeah.

Maya TrialHub (20:56)
mmm

Hmm.

Yeah.

Estelle Jobson (21:22)
So that was one way I just thought this is really a problem. And they were also looking at a kind of relatively limited duration of following those patients. It was apparently for 12 months, which is, you know, that's okay. At the same time, we also know that women often come back within a few years for repeat surgery because...

It wasn't done adequately because this disease regrowth for various reasons. They're just still in pain. adding a sham surgery to that, think it's just too much of a burden for patients.

Maya TrialHub (22:08)
And still, do you think there is enough data out there to know actually how surgeries currently, let's say the traditional surgery, what we do today, for example, for endometriologists, there is plenty of data that can be used and replace this control arm with sham surgery.

Estelle Jobson (22:18)
Hmm.

I think there should be two different, we shouldn't be comparing surgery with sham surgery. We should be comparing excellent surgery with something else, some other standard of care, but excellent surgery, not just surgery, because we've also in our community, we talk and we've all been through operations with doctors that don't have the expertise. They just don't have it. They are not trained in that. It's a very special skillset and you will get a different.

Maya TrialHub (22:38)
Yeah.

Yeah.

Mm.

Estelle Jobson (22:58)
Also a different technique in terms of the type of surgery that there's more or less two schools. The one is ablation, which is kind of like shaving off the surface of the endometriosis, let's say. And then the other one is excision, which is rooting it out, going deep below the visual part and making sure that there's nothing left, there's no root left for it to regrow. And so the damage, the endometriosis lesion itself and the damaged tissue around is removed.

Maya TrialHub (23:16)
Thank

Estelle Jobson (23:27)
That excision is another skill set and it's very sought after. Those surgeons are highly in demand. So I also, you in the back of my mind I'm asking myself, those really expert surgeons? Are they really taking part in that trial? I have my doubts.

Maya TrialHub (23:42)
Yeah. So actually, you're raising a very good question here, because normally, like the so -called site feasibility, they will decide on who will be the investigators for their profile, like which hospitals, and so on and so forth. In this particular case, the patient community will be very sensitive, actually, who will be these people who are actually performing the surgery. On the one side, the whole sham surgery, if I understand correctly, is a

Estelle Jobson (24:07)
Hmm.

Maya TrialHub (24:11)
but it's one big no -no. But even if we don't have the sham surgery, if we even discuss just the surgery part, also it should be with the relevant people, with the people who you know are experts in this field because the downside of having not the right surgery is also quite big. And it's a huge again no -no to even go through that, is very interesting. Do you have the opposite example Estelle Do you have an example of a clinical trial?

Estelle Jobson (24:32)
Yeah.

Maya TrialHub (24:40)
It actually looks quite promising, quite attractive for such patients. I'd love to see if we are to compare.

Estelle Jobson (24:48)
Yeah, there two that I saw that I thought looked quite promising because they're looking at new treatments that are not just, you know, hormone suppression and the one is an enzyme. I'm not going to mention the names but the one is an enzyme which is looking at tackling the sites of the lesions. So it's going straight to the lesions apparently and it's not having a broad systemic

Maya TrialHub (25:02)
Yeah.

Estelle Jobson (25:18)
effect on the hormone system, let's put it that way. And so that sounds kind of interesting to me. And that treatment should be looking also at inflammation at those sites, which is good because, in fact, there's the endometriosis lesion, but the whole area around it becomes inflamed. And then there's systemic inflammation. So that to me sounded like

Maya TrialHub (25:34)
Mmm.

Estelle Jobson (25:47)
interesting and it's a new treatment. It's if I understand correctly, it's something new you know and that's what patients have been saying like please look at the mechanism of inflammation, please look at what's happening in those lesions and how those lesions can be you know stopped from that what they do. So that's the one thing at the same time and this actually applies to to all trials.

Maya TrialHub (25:50)
It's a new approach.

you

Estelle Jobson (26:15)
The inclusion exclusion criteria are, think, because of the definition of the disease as a menstrual disease and that that's one symptom that you can track. The inclusion criteria are, you know, women of a certain age and they must have all their like reproductive plumbing in place. Okay, so they need to have the uterus, they need to have the ovaries, etc. So I can understand that that makes it easier to do the research.

Maya TrialHub (26:38)
Mm -hmm.

Estelle Jobson (26:45)
But that's like saying only those patients have the disease, which is not the case. I, you know, if I've had those parts of me removed in standard of care, let's say, I still have this disease because it's in my genetics. It's a systemic disease, it's a body -wide disease. So I would like to see, for example, something like this going to help with body, other organ inflammation or other aspects of the disease.

Maya TrialHub (27:02)
No.

Estelle Jobson (27:15)
That's kind of an interesting point.

Maya TrialHub (27:18)
Let me elaborate on that. I want to understand actually what you're saying here. Is actually the challenge here that if the clinical trial is doing this trial with women that are different than you, then you will be less likely to believe in treatments like positives, the treatment promises. Or is it that you think that there should be more of a variety and diverse type of population that are testing this out?

not for the sake of the treatment being just to be open and be more accessible in these clinical trials.

Estelle Jobson (27:56)
Yes, I mean to the latter, yes it needs to reach a wider, these trials need to reach a wider range of patients because we still have symptoms even if we don't have our reproductive organs. So let's say that woman whose cry for help I read, she's, most of her, you know, plumbing is gone let's say.

Maya TrialHub (28:10)
Yeah.

Estelle Jobson (28:23)
but she's still suffering endometriosis in her intestines, so she had surgery for that. So she's clearly living with active disease and she's still suffering most of the symptoms. She doesn't have a period anymore, okay, but like a lot of the other things are still active in her disease. So why can she not be part of a trial that is reducing inflammation and lesions and that kind of thing?

it could be really useful for her. You see?

Maya TrialHub (28:53)
Yeah, yeah, I get it. Still at the same time, I'm also trying to like see the other perspective where, for example, what clinical trials are, are hypothesis and you need very specific data to justify this hypothesis and say I was right or I was wrong. So the idea at end of the day is to prove a certain hypothesis and then go to the wider market.

Estelle Jobson (29:07)
Mm

Mm -hmm.

Maya TrialHub (29:19)
where you feel way more secure that you had some good positive results with this narrow group of people. And now you can test that out with world in the world settings where, for example, this lady can also have access to that. get, I get what you're saying. I'm not a biostatistician here. So probably I don't know what are the implications of adding more diverse group of people. I also agree with you. mean, if you ask me, I'm also very much for more people to have.

Estelle Jobson (29:31)
Mm. Yeah.

Maya TrialHub (29:48)
accessibility to clinical trials, then again, sometimes science has its logical explanation. We're like science, statistics in general. but yeah, I completely understand. wonder, actually, let me go back to this clinical trial that you said is actually more promising, let's say more attractive. You mentioned at very beginning that one of the things that you don't like in clinical trials is that they don't necessarily tackle.

Estelle Jobson (29:49)
Hmm.

Yeah, yeah. Yeah.

Hmm.

Mm -hmm.

Maya TrialHub (30:15)
the outcomes that the patient actually is expecting to try. So in this clinical trial, do they actually tackle slightly different side effects or not side effects, but let's say symptoms and are the outcomes more aligned with the patient's expectations? Or you wouldn't say that is the case.

Estelle Jobson (30:19)
Mm.

I don't know enough about it to say for certain, but it looks to me like the outcomes are pretty much the same. They're just trying a different treatment.

Maya TrialHub (30:46)
So the new treatment approach is actually the thing that makes it really special, like for you in this case. Yeah, interesting. If you were to imagine the ideal clinical trial, what would that be? How would it look like? How would it sound?

Estelle Jobson (30:51)
Yeah, yeah, yeah.

Hmm.

Well, there would be a whole different set of outcomes. I understand that to compare one trial to another, you want to have the usual ones, but it would be great to have patient -reported outcomes. It would be great to have that longer list of symptoms that I'm talking about. It would be great to have other, the patients in there who are, you know, say for example,

Maya TrialHub (31:24)
Hmm.

Estelle Jobson (31:33)
Patients who are menopause, they're usually excluded because there's the assumption that, well, you don't have much estrogen going on, so there's no disease growth. But we know that's not true for some patients. So that would be a subgroup. Patients who like this woman, she's got no more...

Maya TrialHub (31:45)
Mmm.

Estelle Jobson (31:59)
uterus, cervix, whatever, but she's still got disease in other organs. That would be interesting to know how are those patients affected by these treatments, because ultimately what we want is a treatment that will help those patients who are in their sort of reproductive years, to call it that, and the, you know, the ones who are supposedly past that, because we are still living with a chronic incurable disease with lifelong effects.

Maya TrialHub (32:04)
Mmm.

Estelle Jobson (32:29)
So would be great if we were somehow able to be included in studies.

and for the follow -up to be longer to look at some years down the line. You know I saw and I was to go back to what I said about the James Lynt Alliance and I pulled out a couple of things from the out of scope category because I thought let's see like where the clues are you know and I mean there was like what is the difference between endometriosis and cancer?

Maya TrialHub (32:44)
Hmm.

Estelle Jobson (33:07)
Good question, because it behaves like a cancer, but it's not. So what is really the difference? There could be something very interesting for researchers to explore. Neuropathy and endometriosis. That's another whole angle. How do nerves transmit pain? Because we also know that sometimes the site of the endometriosis can be gone, but the pain message is still there. So how does that work?

Maya TrialHub (33:14)
Hmm.

Hmm.

Estelle Jobson (33:32)
Then there was one who says, how does endo have such an effect on bladder issues that we spoke about earlier? Because patients, I mean, that can be horrible to live with, but also you can lose a kidney. That's no joke. So there's something that needs to be really addressed that's kind of overlooked. Somebody else says, do you have it from birth? We don't really know why you get endometriosis. There's still like the very...

Maya TrialHub (34:01)
Yeah, the basic.

Estelle Jobson (34:01)
basics of the disease, we don't know the answers to that. And somebody else says, are there other diseases like Lyme disease? Are they related to endometriosis? How is our disease related to other?

autoimmune diseases. It's not really an autoimmune disease but looks a lot like it. So what's the relationship? know? And then somebody else says, what role does the immune system natural killer cells play in relation to recurrent miscarriage even after egg donation in endometriosis patients? We don't know, we don't fully understand why patients with endometriosis have such a problem getting pregnant, embryo implantation.

Maya TrialHub (34:22)
Yeah.

Estelle Jobson (34:45)
keeping the baby to full term, having a good adequate birth weight for the baby. There's all of these other problems that also need to be assessed. So that's around, I mean, I added more to the original question, which would be an ideal trial. I mean, another consideration would be like for any trial,

setting and facilitation and support that enables the participants to take part, stay engaged and that for all participants is things like know support with your transport costs because these are women assigned female at birth a lot of them will of course be doing the lion's share of unpaid work at home, child care and

Maya TrialHub (35:38)
Mmm.

Estelle Jobson (35:40)
pet care and parent care and that kind of thing. So every hour away from that is important time -loss. So what about like vouchers to get a babysitter when you're going for your on -site assessments, that kind of thing. So there's that whole area in which trials can be made more participant friendly.

Maya TrialHub (35:50)
Mm.

Hmm.

Hmm, interesting. If I'm to summarize, because we can go on like this conversation forever, I love what you said that in general, in every single disease, we need to go back to basics and understand where this is coming from. Like, that's the thing with every single patient that I'm speaking to, they all say, well, one of the things is we don't know where this is coming from. I guess, I mean, it's very complicated. I'm pretty sure that we all want to know that.

Estelle Jobson (36:06)
Mm. Mm.

Maya TrialHub (36:29)
But how much time do you actually spend on this rather than serving side effects or let's say symptoms, side effects, not with like symptoms. And I kind of get the feeling that most people like you and other patient advocates that I interview, they all say that they have this feeling that research tackles the symptoms and not actually what's causing it. And therefore coming up with not new treatments that tackle the cause rather than try to help you with some of the symptoms and not all.

Estelle Jobson (36:35)
Mm.

Mm.

Mm -hmm.

Maya TrialHub (36:58)
But if I'm to summarize what makes, what will make research way more attractive is besides being focused on this, going back to basic principles, also to know that you will be taken care by the experts who actually understand this disease, especially in endometriosis like we discussed. These are rare people, but they really are specialists and there is for a reason that they, that they are so like needed. Then also being followed up for longer because

Estelle Jobson (37:14)
Mm.

Mm -hmm.

Mm.

Maya TrialHub (37:27)
This disease kind of acts as an autoimmune disease, so having an improvement for a certain period of time is not a guarantee that you are actually cured and that will never go back. One thing that you mentioned, which is, I guess, it's the must have, is just tackle the treatment from a new angle. Try something different than hormones or surgery because people are not happy anymore today. So what else can we try and tackle and people will be more willing

to give it a try. And then the last thing that you mentioned is also quite important, provide the necessary support. Because like you said, these are like women that need to work, kids, they have their own universes. So this financial and not only type of support to be able to participate in the clinical trial. Did I miss anything, Gastelle?

Estelle Jobson (38:12)
Mm -hmm.

Mm.

I don't think so. I think we covered it well. Yeah, yeah.

Maya TrialHub (38:27)
Thank you so much for providing this perspective. I hope that in a year or two years, let's be a little bit more realistic, not so optimistic. We'll have another conversation and we will be discussing completely different type of research targeting endometriosis differently. I hope that... Yes. Yes.

Estelle Jobson (38:41)
Yeah.

Maybe precision medicine. think that could be amazing and so perfect for endometriosis.

Maya TrialHub (38:52)
But I would also say precision medicine starting with precision diagnostic because you were right at very beginning. that takes like so much time. So maybe hopefully we'll get to diagnose this much quicker and that will help us to actually understand the disease much better and so on and so forth. It's like a snowball effect. So let's hope that we'll have better news next time. And thank you so much for sharing these insights because they're not just relevant for endometriosis, they're relevant across the board.

Estelle Jobson (39:06)
Yeah, yeah.

Yeah, for many chronic conditions, I agree. Yeah, yeah. Thanks for having me, Mai. It's been a great pleasure.

Maya TrialHub (39:22)
Unfortunately. Yeah.

Same here as Bill. Thank you.