Kathryn (00:03):
Hi everyone. We're on episode 13 of season five and I have Matt Rann back with me. Hi Matt.

Matt (00:09):
Hi Kathryn. How are things going?

Kathryn (00:11):
Things are going very, very well. Thank you. I have just started to complete as I'm sure people who are listening have heard me say every now and then obviously that, I was diagnosed with autism last year and I've just been completing some neurological occupational therapy with some sensory profiling. I'm doing that with a company called Krysalis and a lovely woman there called Nicola. And you've just been doing the next stage of that. So that's good. And she's been teaching me lots of techniques and giving me ideas of what I should get at home and to Alan's, very much Alan's delight, she has suggested that I should get a hot tub <laugh> and that might sound strange in some ways, but actually there is a very clear kind of reason behind it for, for people who are living with autism.

Kathryn (00:56):
If there is some symptoms in a sense that revolve around, what's known as proprioception, and that's all about understanding where your body is in relation to the world around you. And I'm not saying that in a, I think some people probably wonder what on earths that, and the best example I can probably give is that people are probably watch out for it now, when they see me walking around, sometimes, and it is a bit for me, it probably comes across as a bit comical when I do it. Sometimes I will walk into doorframes and I've just not judged the depth perception of where my arm is and like that side my body compared to the doorframe. So that's, that's kind of like where I am with that. But it's interesting. So yeah, Alan's very, very happy about this and he's wanted one for years and I've always said no. So, so that's kind of like where I'm up to and how are you doing Matt?

Matt (01:44):
Yeah, I'm not too bad at all. Thank you very much, indeed. Dare I say I'm off to Rome on Monday for, for four days one day, which will be watching the tennis. Okay. The Italian Open. So looking forward to that the only problem is the, the weather, which looks as though it's going to rain nearly every day, despite the weather, it'll be a little bit warmer over there. And of course Rome is an incredible place in its own, right.

Kathryn (02:12):
Yeah. Well, let's face it, the food, the food's going to be amazing.

Matt (02:15):
You know what? Why am I going to Rome? I don't like tennis and I don't like pasta, so there you go. <Laugh>

Kathryn (02:23):
Right. It's, it's a very good job that this will not be going out before you are actually in Italy. So the Italians don't know your thoughts on pasta. So focusing on what we're going to be doing today. So today we are going to be talking about Huntington's disease and what to do if you have this condition or a family history of this condition and are wanting insurance. So this is the Practical Protection Podcast.

Kathryn (02:48):
So to start things off, I usually do like to go through a little bit of a background on what Huntington’s or the condition is. So today's it's going to be Huntington’s, and then we're going to get into the real underwriting side of things with Matt. So Huntington's disease is a neurological condition, and it's usually diagnosed between the ages of 30 and 50. And it is a condition that is hereditary. It will affect a person's mobility, their cognitive functions and their mental health. Unfortunately at the moment, a diagnosis of Huntington’s will result in the person dying at a younger age than we would hope for. It's usually within about 20 years of diagnosis. So that would be 20 years of, of onset of the condition. There is also something as well-known as juvenile Huntington's Disease that is diagnosed in somebody before the age of 20. But this is incredibly rare. It is usually between the ages of 30 - 50, some of the symptoms also mirror what we would maybe see in Parkinson's or Alzheimer's disease. And it is a genetic test that would then confirm specifically that it is Huntington's. Matt, I think it's a good idea to sort of start off saying, what are the symptoms of Huntington's disease? What would you be expecting to hear as an underwriter or, or to see in those kind of medical reports when you get those through?

Matt (04:06):
Okay, well, in terms of the, the early signs of, this is a, a progressive disease, which you've already alluded to of course, but the early signs would be minimal, but slight, but uncontrollable, muscular movements stumbling and clumsiness, lack of concentration, short term memory, lapses, depression, and changes of mood sometimes including aggressive or antisocial behavior. Picking up on the depression side, that within the early periods of being diagnosed and, and through the middle period, actually suicide is quite a big factor in terms of the mortality that show up in, in some statistics. Clearly the, the changes of mood, aggressive antisocial behavior are pretty, can be pretty severe and the depression can be pretty severe. So sadly suicide does come up as a because of death within the early and middle part of this, the progression of this disease.

Matt (05:23):
So that's, that's all pretty sad. So really those, the early middle time, if you want, and they, those, all of those symptoms get progressively or can get, get progressively worse that said symptoms can vary wildly. So it's not all the same. It's not the same for everybody. You could get maybe one or two of those. You could get them in a, in a, in a, in a pretty bad way if you want and not have others, but those are the generally the signs that you would see, not as I say, not all of them necessarily, but later on as the as the illness progresses you can often see involuntary movements, difficulty in speech and swallowing, weight loss, stubbornness, which is obviously part of all the, the, I presume the, the mood and the mental health side of this particular disease frustration, not surprisingly that you, you can't do what you once used to be able to do.

Matt (06:32):
And again, you've got the mood swings as well. So quite a lot of mental health issues coming up, coming up there. I think it's important to say as well, those, those certainly the symptoms of the disease. And I think from an underwriting perspective, it's, it's rare that underwriters would see or get to the stage of seeing the disease at a late stage of it, of this development. Because I think the, the, the, the signs, the, the symptoms are so marked that really the, the, the case probably wouldn't get any further than maybe a help a call from the, from the advisor to the underwriting helpline or a proposal at, at best earlier on. Obviously, as I say, these can be, I've mentioned a, a stack of different symptoms, and these can be pretty mild early on.

Matt (07:33):
So an underwriter would be looking out for those types of things. However, you've, you've mentioned that this is a hereditary disorder of the central nervous system. And I think it's important to set a scene here in, in terms of the family history. And I know some questions will come up later on, on this of this and why it is so, so important from an underwriting angle. And not only that, it's the care of the individual as well, and peace of mind as well. But as I say, it's a hereditary disorder and it's a defect, inherited defect of a single gene, and it's something complicated or not, depending on your knowledge, it's, it's autosomal dominant stage, which means that a person needs only one copy of the defective gene to develop the disorder. So with the exception, you may know that the exception of the genes on, on, on sex chromosomes, a person inherits two copies of every gene, one copy from each parent. Okay. So a parent with a defective gene could pass a defective copy of the gene on, or the healthy copy. So each child in the family has got a 50 chance of inheriting the gene that causes this genetic disorder. I hope that makes sense to, to the listeners. But it's, as I say a 50 percent chance, and obviously it is such a nasty disease that genetic testing is often carried out. And I know Kathryn that you wanted to ask a couple of questions about that later on. So I'll leave that here.

Kathryn (09:24):
I think that's incredibly, yeah. You know, it's, it's really, really helpful, Matt, you know, obviously the, the aspect of the fact that, there is that 50 percent chance. And obviously that in itself, you know, we, we're talking a little bit here about people who have the condition and what that can mean for them, but there's also as well, an extra dynamic as people who are advisors and insurers as well, about speaking with people who have a family history and, you know, having that kind of thing of, of knowing that there's a 50/50 chance of you developing this condition, can, can that in itself can take its toll as well can't it Matt?

Matt (09:58):
Oh, goodness gracious. Yeah. Yeah. I, I think it's frightening to be perfectly honest. But, but nevertheless, these days it's going off the subject a little bit maybe, but with IVF and so and so forth, if you have a family history of this and you are worried about passing it on your children, then you, and there are IVF facilities around whereby a number of eggs can be put in the old Petri dish to sound very cold about it impregnated with sperm, and then those embryos are tested for whether the Huntington’s gene is present or not. Yeah. And obviously if the Huntington gene is then it's down to the parents to say, okay, we won't continue the process with those, but ones that aren't can go back into the, into the mum's womb. And with the parents knowing that that gene won't be carried forward.

Matt (11:04):
So again, it's not really the subject of today necessarily. Yes. But there are ways forward that clients or, or to people listening generally can have a family without with, with the knowledge that they're not, that gene will not be passed onto them. So again, you know, you're talking what the last 30 years, 20, 30 years, or something like that. So it's, it's, it's a positive step forward, not particularly palatable step forward, but it is certainly better than worrying or your life about passing that gene on. So I'm sorry to go off a bit of a tangent there.

Kathryn (11:41):
No, it was really,

Matt (11:42):
I think it's, it's, it's, it's just worth throwing that out there. Really.

Kathryn (11:46):
Absolutely. And I, I think obviously, I mean, talking about the genetics and everything does, does really help. And I think, you know, when we were saying there about, you know, you about how a lot of underwriters possibly wouldn't even see an application from somebody who's obviously really displaying quite marked symptoms and where the conditions progressed and for anybody who's listening who does have the condition, or just have the family history, or is trying to support somebody with the condition what Matt's talking about, our policies, where the underwriters do tend to be quite involved, which would be a lot of what we consider or would be considered standard insurance. There are options away from kind of the standard insurance market that can be looked at. And when I say that, I always wonder if people maybe worried that I'm talking about something that's super expensive or super exclusions and things like that.

Kathryn (12:32):
It really depends upon the situation. It doesn't have to be massively expensive, you know, it, it really just depend upon the individual situation it's always worth asking. And there are times as well that sometimes when we maybe approach an insurer of for this kind of situation, that, if, if somebody were to try and apply and it would maybe be a case of, or they've applied for, I'm just going to take some figures out the air, maybe like a hundred thousand pound over 25 years that the insurer might say no, but actually, if we can, then we can then maybe approach and say, well, actually, so if you can't do 25 years, could you potentially do less? Could you do five years? Could you do 10 years? And, and whilst that might not be the end goal of what we're wanting to achieve, it's something that is there that then as, obviously as time goes on, can continue to be reviewed and see if we can get something a bit longer insurance wise.

Kathryn (13:26):
But one thing I have come across Matt is people being quite confused about when they ask questions by insurer. So sometimes I think people either very happily just go through the questions and just answer them. However, they feel, some people are very fine with the questions that are there. And some people can almost get a little bit uncertain as to what is actually being asked. And some of the things that people ask us about and ask us to clarify more about is this thing about predictive versus diagnostic tests and how they kind of factor into insurance applications. So like, you know, with the focusing on the Huntington's side of things, I'm just wondering if you could explain how that works because you know, insurers are not allowed to ask about genetic testing. But then people get a bit confused with what that means in terms of the predictive versus the diagnostic.

Matt (14:17):
Okay. I think to an extent it's, it's just in the, the, the, the wording of genetic testing really throws people out. Yeah. You think, you know, goodness gracious this is an incredibly complicated subject which it is, let's be fair about it. But really it's, it's very much these, these two different types of tests, if you want broad tests they actually say they do what they say on the tin. So, so most common one is I'm, you know, you will know, and many of our listeners will know, but that's, the diagnostic test is, is used to confirm a diagnosis where a particular condition is suspected based on, on physical sons and symptoms. Okay. So you'll go along to your doc. No I'm suffering from this or something, suffering from that, or my family history isn't great at all. And what the doctor will do, or sorry, a geneticist will do is that they will ask for a, a diagnostic test and that'll confirm whether that person is, is, is actually suffering from, at that time, the, the condition, whatever the condition happens to be. Now, a predictive one really is it, it, it is literally predicting the future if you want.

Matt (15:42):
So if it's predictive was a positive result, it will mean that you have an increased risk of developing disease. So difference being one is diagnostic. It is telling you, you have, and the other one is saying you don't necessarily have, but you've got an increased risk of developing this disease.

Kathryn (16:03):
Yeah.

Matt (16:03):
Is that, have I explained that okay?

Kathryn (16:06):
Yeah, I think so. I think for me, it's comes down. Yeah. I think it sort comes down to, we try to say what diagnostic means there's something going on and you've been having tests to establish the course for what is going on. And the predictive is more sort of like, a there's nothing, it's the opposite way, you know, I can't really say any it any other way to be honest. I'm trying to see, think if I can word it better, but basically there's nothing going on, but it's just in case test, so you can potentially prepare for the future. And I think it's important as well for us to be quite clear on some of the wording that comes with the insurance applications forms, because there's usually a statement that says that insurers cannot ask about genetic testing or something I just mentioned then, you know, with either a positive or a negative result, except for Huntington's, if somebody's applying for more than 500,000 pounds worth of life insurance, or 300,000 pounds worth of critical illness.

Kathryn (16:56):
So if you have had a genetic test and you know, it's been a positive, you, you must tell the insurer about that if you are applying for insurance above those figures. So I suppose what's interesting about that Matt, because I imagine obviously Huntington's is a, is, as we've said before, it is, it's an intense condition that is going to be life limiting, but it's certainly not the only one. And I'm, I'm certainly not wanting to advocate adding even more conditions to this list of predictive need to notify an insurer. But I suppose I do wonder why we would ask about Huntington’s and not necessarily others.

Matt (17:38):
Yeah. I, I think it it's, it's a, it's a very good question. Really I think that, and I'm, I I'll probably have to go back. And I, haven't got like a very long time when I actually sat on the ABI's genetic committee. And we discussed the talked through number of chief medical officers and so on and so forth often would join these meetings as well. Talked through the whys and wherefores really of what we were going to do as a whole with, with genetic testing in, in the insurance industry. Now of course I'm going off on a tangent slightly here, but of course the great concern at the time which hasn't really materialised as yet. Although I think we might be moving towards is the fact that people could take genetic tests out with the normal medical environment know whether they had either diagnostic, positive for diagnostic for particular disease or, or predictive, and then start taking out life insurance because they knew that something was, was up.

Matt (18:51):
Um but obviously nobody in the medical profession would actually know and therefore do what they do. In terms of Huntington's, I don't think I've ultimately got a, a great answer for you apart from saying it's one. It was the kind of like, you're absolutely right to say that there are other conditions out there certainly, but Huntington's at the time certainly stood out as the most obvious whereby if you knew that you were, you were positive then the, the chance, well, we've already talked about I'm not sure if we have actually talked about when you're likely to die in the context of, of the disease. Maybe you have Kathryn apologies.

Kathryn (19:40):
No, I said within about, I think I said about within about 20 years of diagnosis.

Matt (19:44):
Yeah. Yeah. I think that, that certainly is where, I mean, I've got 10 to 30, I think, noted down somewhere, but so that falls right in the middle. Yeah. Huntington's disease kind of stood out as the, is the most obvious and nastiest is not the right word to use. But the one that insurers should worry about the most, I suppose, is the best way to, to try. And I would emphasise the word, try and explain that it it's, it's been there since the beginning of time that Huntington's disease sum assured and maybe it's time to think about it again. I, I don't know, but as far as I am aware until you've just raised it I'm, you know, I'm, I'm not aware of, of, of any bad press or concerns about that. Some assure being, being in there. I think we also have to think that, you know, you, at least if, if you look at the insurance buying public and the average sum assured for a life policy, let's say it, it is well under half a million pounds. Um I, I don’t know if you have a figure, the kind of last figures I were hearing were around 180,000 was the average, was that, would that be about right?

Kathryn (21:05):
I don't know the average. I mean, I have to say, I mean, I'm not saying that we've spoken to, to lots and lots of people living the condition, but sorry that we have like family members that have gone through the genetic testing. And I think it comes down to that balance of, there's not been a lot of people with an insurable need above those figures. Sometimes people are, but generally so again, for anybody who's not familiar too much with insurance terminology as an advisor and, and also insurers, what we're always trying to establish is what's not as the insurable interest. So, so why do you need that much insurance? You can't just generally turn up to an insurer, and say I want 3 million pounds worth of life insurance that, you know, they're going to want to know why they'd want to see financial information.

Kathryn (21:47):
They'd want you to attend medicals to, to make sure that they understand what, what is this for that the, you know, the, we don't use life insurance in a sense to generate wealth. It needs to be in a sense of reason. So, so for a lot of people something like a mortgage can easily put people over the 500,000 pound number for their life insurance. Sometimes there's lots of ways to build up these recommendations. So it can be a mortgage. It can be sometimes certain multiples of salary based upon family protection. It can sometimes go into things like the more complex things such as inheritance tax planning and things like that. But for a lot of people, I would say that, you know, probably the 500,000 pounds of life insurance, they would probably quite happily sit within that and not trigger this this

Matt (22:40):
Request to notify. Yeah, absolutely.

Kathryn (22:44):
But I think, you know, in the other side of things, though, that probably takes us quite nicely, Matt, onto discussing the family medical history side of things. So whilst we don't need to obviously always tell the insurer about these predictive tests, we do often need to talk about the family medical history.

Matt (23:01):
Can I, can I just interject there? Just, it covers one of the points earlier and I think I want to make it, I think it's important to make it very, very clear. That whilst we, we, as an, I'm sorry, in this context, I mean, underwriters but why not the insurance industry? We don't ask for the results of tests, but big, big point is here. If you've had a test and it is negative, you can let your financial advisor know, and that can be built into the underwriting decision.

Kathryn (23:42):
Yeah, you can volunteer that information. Yes.

Matt (23:43):
You can volunteer that information, and in fact, I would almost say if you have a negative test, absolutely. Make sure you volunteer that information. Don't forget. It's not that insurers will turn around and say, no, sorry, we can't ask for that. Therefore, we're not going to use it. They will use it. So I can absolutely assure you. And with Huntington’s, that's an absolute classic scenario whereby, and I suppose you can say it's, it's rather obvious really, but I think it's important to say that if you have a parent who has Huntington's disease and then the child, well, obviously they might be a little bit older, then the child has a negative test, then they will be standard rates.

Kathryn (24:29):
Yeah.

Matt (24:29):
Even if you, no, it's not. We know that there, there is no risk there because they haven't got the, the positive gene and therefore the effective gene and therefore they will get standard rates. So I think it's important to, to, to say, and you're quite right Kathryn, and you you've mentioned other diseases in the context of the of the Huntington’s, but you know, the ones that I, underwriters do see a fair amount of the, you know, the BRCA genes, breast and ovarian cancerscenarios. Absolutely. Where, where it's important to know for the underwriters to, to, to know what's what is going on and with, with BRCA I can't remember the exact figures. I think that all breast cancers only, I say only it's far too much, but 10, 15% of breast cancers are, are, are genetically linked from BRCA anyway, but it is, you know, it, it still will help. It'll give the underwriter a, a reason to be as generous as they possibly can.

Kathryn (25:33):
Yeah.

Matt (25:33):
So that's, that's all I would highlight there. Do you want to, do you want to go onto you to the, to the next question? I'm sorry, I couldn't give you a better answer on Huntington's by the way in the 500,000. But you know, maybe it is, you know, things, things should never say stay the shouldn't stay the same for, just for the sake of it. And I think maybe that, that, that was that that someone should was put in a long, long time ago. Maybe it is time for, for somebody somewhere to just, just recheck whether that's a reasonable figure or not. But I think, look at the basis of the typical size of policy that is sold in the UK and, and, and go on from there. Okay. Sorry.

Kathryn (26:17):
Absolutely. No, no, that's fine.

Matt (26:18):
I hope that helps.

Kathryn (26:19):
It does. I think, you know, sort of like just a little bit of a recap on that one is just to say to people that with, you know, there are usually a set of family, medical history questionnaires on these applications, they will generally ask for if your family has experienced something before the age of 65, sometimes the age of 60. Yeah. And when they do this, I always like to be curious, well, so this is to do with your immediate blood related parents and siblings and insurers do take, take into account if you are restrained from your family or you're adopted. So, so please don't worry about that. There has been a lot of development and understanding in the differences in family dynamics and what people people's personal circumstances are. But generally within that, we would be seeing questions along the lines of, you know, cancer, heart attack, stroke sometimes things to do with the kidneys, certain conditions that way, and, you know, Huntington's disease would be something that's listed.

Kathryn (27:12):
And, and the fact that a lot of people are diagnosed between the ages of 30 and 50 does mean that it often comes up in the question set. So whilst you might have a family medical history and you might think, well, I'm, I'm going to be applying for less than this amount. So even though I've had genetic testing, whether or not it's positive or negative, it's, I'm not going to need to say anything about me whilst that is the case. There is usually a question somewhere where they, they will take into account and notice from the family medical history, which is, is with what you were saying matters that if you have had a test and it has been negative, then that can be really useful to volunteer. One thing we have had before as well, sometimes is people sometimes say to us, well, would it be better for me? If I have a genetic test, will I get better options?

Kathryn (27:53):
And that's a really tricky one to answer. Yeah. Because that is absolutely up to the individual because there is there is a very clear potential potentially upsetting experience when you're going to be faced with your own mortality and, and the chance that you'll develop this condition. So as an advisor, we wouldn't ever advise to have the test or, or not to have this, or I was going to say, we would never do that. I would, I would suggest all advisors, I can't say for everybody, but I would suggest to all advisors that you wouldn't be involved in suggesting whether or not somebody has that test or not, because obviously it could be an incredibly positive thing. It could also be an incredibly emotional thing that could be, could lead to obviously some mental health and difficulties.

Kathryn (28:44):
And I certainly, I mean, I'm talking about that from the aspect of somebody asking you your opinion, I would certainly never suggest that you volunteer suggesting somebody that they have that test. Because it could make the terms better on the basis that the person that you're speaking to will have been faced with that perspective of taking that test for probably quite a long time. And they will have hopefully been able to make peace with whatever decision they made with that. And you know, certainly you don't want to be putting anybody in a situation where you're making them in a sense second guess themselves, or potentially leading them into something that would, would make them not feel okay.

Matt (29:25):
Yeah. I, I completely support that. You know believe underwriters get asked that question as well. And you know, it is, it is not for an underwriter or anybody to suggest one way or the other, it's it, when people do have genetic tests, I've not had one, but my understanding is that there's a, you know, there, there are professional people who are used to the discussions, pros and cons of doing these and, and counseling certainly is pre-test is very, very important here. So it's certainly something which the insurance industry shouldn't get involved with. I support that completely and I, and I just, I don't think it's just advisors and I, I don't, I appreciate that

Kathryn (30:10):
Absolutely.

Matt (30:11):
You're talking from an advisor perspective. I know. But yeah, underwriters get asked that question as well, so don't get involved. The GP first port of call and then they will no doubt get you to a geneticist if you really want to explore the pros and cons of this at a later stage.

Kathryn (30:30):
Absolutely. so the next one's going on to a little bit of a product query here, Matt. So thinking about like critical illness cover, obviously it's a really interesting area. So critical illness cover is a policy that pays out if you are diagnosed with a critical illness. So that would be you know, heart attacks often of a certain severity cancer of a specific severity and potentially stroke again, with a certain severity, it can be Parkinson's. It could be a certain amount of third degree burns to the, to the body. It can be permanent loss of limbs. There's lots and lots of things usually I would say probably on average, at least 50 conditions that would be covered by that policy. Now, one thing that's always been interesting is that we've had quite a lot of people and one of the, the main queries that we get that comes into ourselves, that where we know it's linked to critical illness cover and a Huntington's either diagnosis either for themselves or for family member is they want to know if they can have critical illness cover that will cover them for the diagnosis of Huntington’s.

Kathryn (31:34):
Now, something that's really interested with that is the fact that Huntington’s isn't listed as a critical illness, but based upon how difficult it is to get insurances sometimes and, and different things like that, depending even upon just family medical history it does make you wonder why it wouldn't be covered under that there are some specific aspects of the policies that it could come under, which would be something that's known as total permanent disability. Once the condition has reached a certain level of severity in terms of symptoms. We do have some insurance policies now, the critical clinical cover where it doesn't list specific neurological conditions. And it just says you are diagnosed with a neurological condition of a certain severity, which, which would actually pay out for Huntington's, but that is a rarity rather than the norm that we would see with these products. So Matt, really, I suppose my, the question I'm posing to you, and I hope that this isn't too much putting you on the spot or <laugh>, or I'm sure there's underwriters everywhere that have probably got answers for me. And please, I always say, please do reach out to me and let me know the answers. And you know, I'm not going to be sharing your names with anybody or anything. I'm just, I'm genuinely intrigued, but why isn't Huntington's disease considered a critical illness for these types of policies?

Matt (32:51):
Okay. I, I think I just, again, want to sidetrack slightly in answering this or attempting, I have to say attempting to answer the question in that. I don't think anybody in the insurance industry would say that Huntington's is not a critical illness. It is a nasty disease, which we've already talked about and very nasty disorder. So there's, there is no doubt that one could argue. I find it very difficult not to argue that Huntington's is a critical illness. The point that you made earlier on was why isn't it listed as a critical illness? And I, I think that's a pretty good question, I suppose. If I can throw an answer or a question back to you and, and that is you mentioned that, there's quite a lot, to quote, to paraphrase, quite a lot of people want to get this critical illness that is, and, and have Huntington's as a claimable condition. So one of the listed disorders now, given the genetic makeup of the disease and the fact that we've talked about 50% likelihood, if you have a parent you know, the, the cynic, you know, I will be cynical slightly. Why would they want the cover if they didn't, they knew that they didn't have Huntington’s. Why would they, why would they be concerned about it?

Kathryn (34:26):
I suppose you could say the same though for people that know they're positive for the BRCA gene and potentially know that they, I suppose that is a potential rather than the Huntington's, which is a, is a, a certain, well

Matt (34:39):
On, on 50%. Yeah,

Kathryn (34:41):
Yeah. Sorry. Yes. Sorry. Yes, of course.

Matt (34:44):
I mean, it's, it's, it's, it's a bit of a rhetorical question in a sort of way. You know, one, people would be so concerned about getting cover for specifically Huntington’s? If they knew that they didn't have it, maybe the concern is they have a parent who has it and they don't know whether they've got it or not. And they, they're kind of looking to hedge their bets, I suppose. But it it's, it's, it's a good question. I think that,

Kathryn (35:19):
I feel like I've stumped you, Matt. I feel like there, isn't an easy answer. I feel like there's one of those things that...

Matt (35:24):
No, no, no. Sorry. Yes, yes, yes. I suppose. Rather than, no, no, no. I'm not sure. I'm not sure about ultimately stumped, but it's certainly not an easy question to answer apart from, I would go back and say, well, look, there are other areas of the, of critical illness you've mentioned. Certainly one insurer. I know you haven't mentioned them by name, but one insurer whereby Huntington's could be claimed for under a, under a different listed illness or, or group of symptoms. But obviously I say obviously T P D is the one whereby you would you could easily claim, I think for some of the later stages of, of Huntington’s. I think if I, if I have to really go back to the, when critically illness was really thought out the first policies in the UK were, were, were issued and obviously the actuaries and underwriters got together in a, in a, in a big way to discuss the risks that were involved in this type of policy in terms of, you know, making sure that the right premiums were paid by the, in the right instance in the right cases, and I think with Huntington’s, there was a, if you covered Huntington’s, then the additional cost of the claims that came from that would potentially make the policy even more exp or perceived even more expensive than it is already, and therefore the best way to handle it.

Matt (37:06):
And, you know, the, whether it's the best way or not is, is, is debatable was to say, okay, we're going to, we'll put it under T P D and deal with the claims that come through that way by, you know, but also at the same time, obviously monitoring the claims that come through under T P D. So generally when things aren't covered, when, when, when genuine critical illness is not covered by an insurance company, critical illness plan, there is a good reason for it. And that's often I think, to do with the, the, the pricing and the ability of the underwriters to ensure in, to ensure that that pricing is give or take correct. And I think it, to underwrite out those cases would've been maybe problem, maybe problematic. And as such cover was felt not to be explicitly offered as in a listed illness, but nevertheless, as I say, well, you said, sorry, there are companies that will effectively cover Huntington’s. But there's always T P D as well, whereby total and permanent disabilities, as you know then the symptoms that I've outlined earlier at the severity of disease, then there, that will certainly make a claim possible. I'm just trying to think here, in terms of critical illness, if, if bear mind you you've talked about the family history questions. If somebody, if somebody actually discloses

Kathryn (38:46):
Family history, would they get critical illness, will they get critical illness?

Matt (38:50):
My understanding is, well, what's, what's your, rather than my understanding, what's, what's your practical take on that? When people who have a family history of immediate family history of Huntington’s, how, how do insurers look at them from, from a critical illness perspective?

Kathryn (39:08):
In terms of when we do research for critical illness cover for somebody who has a family history of Huntington’s, we would find with standard insurers that they wouldn't be able to get critical illness cover. And I think one thing that sort of like really stands out for me with that is that, is that firstly Huntington’s isn't covered, it isn't listed as a critical illness. So we don't even in a sense need to put an exclusion on the policy for anything related, anything linked to Huntington's because of the fact that it's not there, maybe not saying anything related to it, but, you know, generally it's, it's not there so we're not having to put an exclusion on, but also based upon most policies, it would be the total permanent disability that would cover a potential claim for Huntington’s. And we do have quite a few times where total permanent disability is excluded from a policy. Now, I don't know enough in terms of information about, does Huntington’s increase the risk of heart attacks of cancer stroke or the other conditions that are listed there, but it does from, from not having the insight of a, of an underwriter, and all the years training that you've had, Matt, it, it does. Sometimes you look at these things and you think, well, why can't we just exclude total permanent disability?

Matt (40:21):
It's a very good question. And on that one, I would have to say, it's, it's a very good point. And if somebody is out there that has a,

Kathryn (40:31):
Has an answer for me.

Matt (40:32):
An answer for you. Yeah. It would be good to, to know, I would learn something myself ultimately. I'm just trying to, I'm just looking at the, if we looked at those symptoms, whether they would mean, you've already talked about the big ones, so you've got cancer and heart attack, stroke. Is there an increase in those now the common causes of death of Huntington's, it's not it's, it's, it's including the following really, but it's, it's pneumonia and other infections.

Kathryn (41:11):
Right.

Matt (41:12):
Will tend to kill people. Injuries. This is kill, mind you, we are talking.

Kathryn (41:15):
Yeah. We're talking life here.

Matt (41:17):
Injuries related to falls and complications related to the inability to swallow.

Kathryn (41:23):
So, I mean, so that could be potentially what a traumatic head injury?

Matt (41:28):
The logical way of looking at it, at least for me anyway, is that somewhere in the list of issues that Huntington's causes, you know, we, we talked about the early signs and symptoms signs later on, and also just talked about the common causes of death from Huntington's. Then I think within the lists here, there must be something whereby there is an increased risk to some of those other listed critical illnesses. You, you mentioned yourself earlier Kathryn about, you know stroke, heart disease, cancer, and so on and so forth. That's really the only logical answer I can give to why underwriters insurance companies, etcetera, would decline as opposed to exclude that's the usual reason for it. But I'd have to say on the, I suppose, on the, on the, you know, the, the, the research and, and based on knowledge that I've acquired over the years, there is nothing obvious from the various bits and pieces. I've said, sorry, what I mean by bits and pieces is disorders and medical conditions, that would automatically make me think, ah, that's a red flag. So it's, it's a good question. And I say, if there's anybody out there who can build on that then I, I would love to hear as well as Kathryn, to be perfectly honest with you, but that's as best I can do at the moment. Hope that's okay?

Kathryn (42:54):
That is, you know, obviously really, really helpful. Matt, thank you. And I think it's one of those things where there's not an easy answer. And I think, you know, I've been doing a little bit of work, you know, I do work alongside some underwriters working, sort of like on a voluntary basis, some actuaries, learning about more of those side of things. And one of the things that really stands out to me is how much insurers, if they are going to make any changes, it's so dependent upon the data and, you know, and when we're looking at things and they're looking about how they would maybe assess somebody with breast cancer, you know, they've had, you know, hundreds of thousands, millions of people over decades that they've been able to, to sort of look at the statistics to say, well, if somebody's diagnosed at this this age with this, what did that happen?

Kathryn (43:37):
You know, in terms of how long they lived for what happened, you know, as medical advance to happened. I mean, I can't even imagine the amount of complexity that comes into that kind of level of diagnosis. I don't think I could actually cope looking at it to be honest. And, and I think it probably comes down to, because I know when I was trying to have a look at some statistics on Huntington’s, I, I couldn't actually find many that kind of gave more sort like a, a national sort of like insight. I got some that was more localised, but nothing nationally to the UK. But it doesn't seem as if, you know, people are being diagnosed at the same amount as other conditions. And I'm not saying that's sort like trivialised condition, because it is, you know, it', it is a very significant condition that people need be aware of and that we should be trying to obviously do as much as we can to support.

Kathryn (44:25):
But what I obviously, whilst I pose some challenges in terms of the way that some products are designed, maybe in the way that some underwriting philosophies work, I also, at the same point, want to say about the industry, that the industry, it can only work and the insurer can only work upon what they can analyse as, as a risk. And I'm, and I can't imagine that there's anywhere near the same amount of data available for people with Huntington’s as there would be for, for many of the conditions, including things like let's say, cancers, mental health, heart attacks, and, and things like that. Is, is that right, Matt?

Matt (45:01):
I, I certainly would say the, the statistics on, on the diagnosis of Huntington’s should be out there, but rather like you I, I find it very difficult to, to find any publicly available data. And it's certainly isn't on, well, I couldn't see it anyway on the Huntington's disease association website. But yeah, the, I don't get the impression, the prevalence in the UK at least is particularly huge in comparison with some other diseases. There's no two ways about that. And part of it might be because it's, of course it's an inherited disorder and the knowledge about the, the inheritance that's come through in more recent times. And when I would say more recent times, I mean the last 30, 40 years or so on or so forth so that sadly people who historically anyway, people who have histories of Huntington’s wouldn't have had children and therefore wouldn't be you know, the, the, the disease wouldn't be carried on, or of course, some thankfully more recently have got the ability to do kind of an IVF type treatments to eradicate that gene.

Matt (46:24):
And therefore, I would, my gut feel is that the, the, the gene, sorry, the pool of Huntington’s disease cases is, is relatively small in comparison with, with other diseases. And that's not to say or take anything away from how horrific this disease actually is. So you're absolutely right in, in, in broad terms around the, the underwriters and actuaries in particular, they, you know, ultimately all of the ratings should have some form of sound actuary underwriting basis to them. And certainly some of the strange decisions that, that you kind of that, that come out and they look completely over the top

Matt (47:14):
At first look, and maybe I could say Covid has been rather controversial, the insurers reactions to COVID. Yeah. Even if I go back all those years ago, HIV were, were, could be perceived as completing completely over the top, but the reality is without the data to understand what the end game could look like, then bear in mind, that the underwriting, or the, sorry, the insurance, the whole of the insurance process is around risk. You know, not going to risk you're not going to put money behind something where you just don't, we just don't understand the risk. You know, that's, that's the same as banking, investment, anything you know, you know, you're not going to put behind money, money behind something, which you just don't understand. And, that will go, that really kind of shows the, underlines your point about the importance of data. If it's not there than insurance companies won't want to take a risk on it.

Kathryn (48:15):
Yeah, no, I, I

Matt (48:17):
So that's really, and, you know,

Kathryn (48:19):
Yeah.

Matt (48:20):
I think that probably sums up what you were saying. So I agree. I agree with what you're saying. Yeah, absolutely.

Kathryn (48:25):
Okay. So I've got a couple of case studies to close off the podcast today. So these are people that had a family history of somebody with Huntington's disease. And as I said, this is just immediate blood relative. So it is purely parents and siblings. The insurers don't want to know about aunties, uncles, grandparents, cousins, children, anything like that. We're talking about your initial family kind of set. So I've got two life insurance options here to explain. So the first one was somebody that had a family history of a parent and a sibling that were diagnosed with Huntington disease. One had been in their forties and one was in their thirties. Now this person was 50 years old and needing life insurance due to their specific circumstances. And based upon that, we'd arranged for them to have 250,000 pounds worth of level life insurance over 16 years for a premium that was close to 55 pounds per month.

Kathryn (49:21):
The other person that we helped, and these are just a couple of examples we have, was a person who had a parent diagnosed in their forties and they themselves had being tested. And they did know that they were positive for the Huntington's disease gene. Now, this person was in their mid-thirties, they had the, the positive test, and they'd also had depression as a result of the diagnosis. And for that person, again, due to their individual circumstances and how much cover they needed, we arranged 80,000 pounds worth of level life insurance over 30 years. And that was 22 pounds per month. Well, thank you for listening everybody. I hope that this is being helpful. And thank you so much for your insights, Matt. It's always lovely to have you on.

Matt (50:09):
Thanks very much. Particularly enjoyable, enjoyable session. I have to say the some of the testing questions is exactly why I still love underwriting after 41, 42 years. Because nobody's got all, all the answers. That's what makes it so interesting. So thank you.

Kathryn (50:25):
Yeah, absolutely. Or thank you for, thank you for listening to my challenging questions in such a, in such a public forum as well. There's not many that would, that would get onto something like this and speak so openly about things. So, so thank you, next time I'm going to be back with Roy McLoughlin and Keith Richards, Keith Richards is joining us to talk about the Financial Vulnerability Task Force, which is a key area that we all need to be aware of during these difficult economic times and really at, at any time as well. If you'd like a reminder of the next episode, please drop me a message on social media or visit the website, practical-protection.co.uk. And don't forget if you've listened to this as part of your work, you can claim a CPD certificate on the website, too, thanks to our sponsors, the Octo Members. Thank you, Matt. Bye. Thank you.