Episode 10 | HIV

Hi Everyone,

In this episode we are chatting about HIV with our guest Rosalie Hayes from the National Aids Trust. Rosalie is chatting about the insurance from the viewpoint of people that are living with HIV, the barriers that have been faced, where insurance seems to be getting better and how there needs to be a clear focus on fair and reasonable terms of cover.

Our 3 key takeaways,

1. There are around 100,000 people living with HIV in the UK.

2. The need to ensure that all insurance decisions adhere to the Equalities Act.

3. Two case study clients who are living with HIV and were able to access life insurance and income protection.

We always love to hear from you, please do let us know your thoughts of the podcast and if you like what we are doing. In the next episode, Kathryn will have her first solo outing with another guest for the start of Season 2.

Kathryn Knowles 

Hi, everyone, this is Episode 10. And today we have our fourth guest on the podcast Rosalie Hayes, who works for the National AIDS trust. Hi, Rosalie.

 

Rosalie Hayes 

Hi, lovely to be here. Thanks for the invitation.

 

Andrew Wibberley 

Hi, Rosalie.

 

Kathryn Knowles 

Thank you very, very much for coming on. It’s really such an important topic especially I think even now, in the midst of everything with a lockdown. It’s really, really important that we talk about this so. So yeah, so how have you both been? Have you been this weekend?

 

Rosalie Hayes 

Yeah,  it was good. I had I’ve been feeling pretty overwhelmed by the events of the last few weeks, but also pretty heartened by the amount of people who are kind of speaking out against systemic racism in the UK as well as the US. So I actually joined the virtual  Black Lives Matter virtual protests on Sunday, which was really inspiring. Yeah. So they organised it via zoom. And they had like footage from the protest, and they were showing petitions and encouraging people to donate to organisations. And yeah, it was just really, really informative and inclusive. And yeah, it’s very inspiring. So that was really positive.

 

Kathryn Knowles 

Brilliant, I think it’s fantastic. Well, we’ve set up a virtual book club for doing lockdown. And it’s my turn to choose next month, and I’m wanting to choose a book about systemic racism within the UK and everything that I’m trying so hard to find, and it’s sold out everywhere. So I’m trying really hard. I’ve got a few different books that have been suggested to me. So absolutely. I think education is so important at this time. Yeah.

 

Andrew Wibberley 

Yeah, I’ve just if I seem even more discombobulated than normal, I’ve just been trying to do the chat with my seven year old and five year old about it all, which is going okay, and Alex really liked the statue coming down here. He understood why that was a good thing. Or, you know, yeah, how you could see this either way. And then even my five year old just got very concerned that what what if? What if there were fish under where the statue went into the water?

 

Andrew Wibberley 

Yeah, and you kind of you prepare every style, you should make your own opinion on these things. I’ll slightly guide you, but you should, you know, get to the right answer in your own way. And then yeah, that was that. Then I was like yeah I’ve got a podcast now. Sorry. Yeah.

 

Kathryn Knowles 

Good valid points.

 

Andrew Wibberley 

Yeah, I think I think I think we’re getting there. But it’s fascinating. Yeah. I mean, it’s, as you say, Rosalie, it’s yeah, inspiring. And it is it’s nice. It’s actually quite therapeutic. I think, having children to kind of just get back to basics and almost have an excuse to relearn stuff, which I think is a key theme.

 

Kathryn Knowles 

Yeah, well, my kids are just so shocked. You know, when I was saying to them about what is happening and I say to myself because of this colour of someone’s skin and they’re just looking at me like what? You know, it’s just such a concept that they just think what? why? why would that ever be? You know it they just can’t fathom why that would be an issue and it’s just it’s, it’s so sad in some ways as well to have to teach children why it’s it’s been an issue and why some people are bad that way and you know and judgmental on different things and it’s very, very difficult. But we are moving on to more the podcasting things and so we had our truth or lie feature last week, Andrew, Do you want to do a recount of of it all?

 

Andrew Wibberley 

Yes, I did. I can’t remember why we had this theme. There must have been some logic but I, my truth or lie was that I was first in the queue to our local McDonald’s when it reopened recently. Because in Chelmsford, we seem to be the centre of global McDonald’s almost, we had five reopened as the test site. So mine was a lie although I have, we have a been since it’s reopened, and it was amazing. I am salivated Ah, the 20 minutes was appalling. I was appalled by myself. Yes so so that’s a genuine confession I’ve kind of I’ve seen people do who on Earth are these people doing? So but it was a lie. I wasn’t we weren’t quite there

 

Rosalie Hayes 

Yeah you would have liked to be.

 

Kathryn Knowles 

Well, mine was the truth and I think it was my truth so I set off this whole thing about the the healthiness in a sense, so yes, so anybody who knows me I’m six foot tall. And now I am what people consider to be slim. But yes, I used to be size 22 and weighed about 15 stone. And the reason is and in all fairness, I don’t care any doctors or underwriters, or whoever’s listening, this is the reason okay. I had an I kid, you not, I had 357 gallstones.

 

Rosalie Hayes 

Oh my goodness.

 

Kathryn Knowles 

And I couldn’t eat properly for about six months. So as I was like I’ve got bigger and bigger and bigger and then for six months I literally could eat like rice and chicken that was what the only thing I could eat without just being horrendously ill. And they eventually they were like, okay, let’s check your stomach out and and yeah, they found all these gallstones took my gallbladder out and then everything was fine the weight started dropping off and everything was fine. So I’m not sure of the exact relation, but that was the timeline of events. And yeah, I’m sure somebody will probably contact me and say that’s impossible but it is possible I lived it, I’ve got scars on my tummy to prove it. So yeah. But anyway, so that is our truth, or lie feature film from last week. So Rosalie, van you please let our listeners know a bit about yourself, please.

 

Rosalie Hayes 

So I’m the Senior Policy and Campaigns Officer at the National AIDS trust. And, and I’ve been working there for just over three and a half years. And so we’re a policy and campaigning charity that work on behalf of people living with HIV and working kind of improve access to services and you know, fulfilling their rights. And I’ve led on a kind of variety of projects.

 

So ranging from advocating for access to infant formula for mothers living with HIV via the NHS. And I worked monitoring the HIV response across Europe and Central Asia in collaboration with the European Centre for Disease Prevention and Control. And I also currently provide casework support and advice to other HIV organisations who are supporting people who’ve experienced HIV discrimination. And, and of course, I lead on our work advocating for improved access to insurance for people living with HIV. And so that’s work and outside of it I like to cook and I do a lot of yoga and my most recent lockdown hobby is skateboarding. So just take, a fairly impressive selection of bruises as well so that for that

 

Kathryn Knowles 

That makes me like, I’m starting to learn the flute, but that kind of puts my flute to a shame. I’m seeing you on like railings now.

 

Rosalie Hayes 

Oh no, I’m still just like working on staying up right.

 

Kathryn Knowles 

Good for you, that’s awesome.

 

Andrew Wibberley 

Well done well done. I want to ask like what your best, I feel like as an underwriter I should have a question for everything. Just because I found a new reason to rate someone. What’s your most impressive trick. Resist, I’ll resist the temptation will say we will bring you back both there’s ever a skateboarding episode. So I think genuinely and I fear of always saying this to people who come on, Kathryn and I were really right from the start kind of keen that you would be the kind of ideal guest for what we’re trying to do here. So really, really pleased we’ve got you on today.

 

We’ve all worked with each other in different guises, I think at different stages around that concept to kind of really fight for fairer access to insurance. And I think whenever I’ve worked with you, I’ve been really impressed by your, both the depth of your knowledge and kind of global knowledge as you’ve already highlighted, and the knowledge from different policy areas, which for people like me is we just don’t get insight to. But also, I guess, to the title of this podcast, that kind of a practical understanding and the practical realities. And I think that’s one of the things I always take when I work with charities is probably before I’d done it as much as I do now, there was kind of this theory that there wouldn’t be the realistic understanding. Well, we can’t we can’t do everything for everyone.

 

I think when I work with people like you and Leo and other people like that, sorry, Leo from Macmillan, they’re absolutely use that understanding, but it’s also that well, you know, we still need to challenge and scrutinise, and that understanding makes it even more powerful. Think on HIV and HIV specifically, it’s been a really interesting area for anywhere in insurance partly because so for the whispers quietly, two decades, I’ve worked in insurance. We’ve, you’ve generally heard insurance kind of coming out positively talking about what they’re doing for HIV now that they weren’t doing for HIV three or four years ago. And the obvious challenge there is whether we’ve moved fast enough, whether this is the endpoint, where we are today, or whether there’s always kind of something in the bank that we could be doing now. And it is also, I guess, just generalising for a second, I think then it becomes a really relevant point for some of the other things we’ve talked about. Whether that’s stuff like vaping and e-cigarettes, or you know, the main thing today coronavirus, where, when new risks emerge or when new things happen. How will you make sure we don’t always have to wait kind of 30 years for data to emerge to do the right thing.

 

So there’s, I think there’s both an interest in HIV. But even if you aren’t totally interested in HIV and listening to this, and I think you can easily overlay a lot of logic into other conditions. And probably the last bit for me, intro wise and I think why it’s so important that we get this right was just reflecting the, the insurers relationship with HIV over time. In 2015, the ABI published the last I think it’s fair to say the last guiding principles on HIV, which emphasise that and I quote, “HIV is now treated by insurance like any other pre existing condition”.

 

Now, that seems kind of, from my perspective, interested in yours, an obvious but true statement, and even in making that statement, suggests it wasn’t always the case. And I think for underwriters, business development managers, advisors, it’s worth remembering when people apply for cover that when they, if they’ve applied for cover at any point before, the approach for life insurance may have been very, very different. So the questions that have been asked might be kind of shocking, frankly, compared to what’s asked today. But that’s probably a good point to let you speak a bit recently about how you see it and how that compares to your community.

 

Rosalie Hayes 

So, um, back in 2017, I ran a survey as part of our research into access to insurance for people living with HIV. And we found that 60% of respondents had avoided at least once in the past five years applying for a financial product and because of fears of high costs, or fees or stigma, and, and we from looking at the responses, we felt like fears can be linked in part to a lack of awareness of what insurance products are now available. And but I think they also need to be understood within two contextual factors.

 

So one being past experiences, and the other being the current levels of stigma experienced by people living with HIV today. So just to touch on the past experiences, and as some of your listeners may know, for many gay and bisexual men, invasive lifestyle questionnaires, mandatory HIV testing heavily loaded premiums, and a refusal to accept the validity of long term relationships, were a common experience when seeking life and protection insurance in the past. And this did change with the introduction of strict guidelines by the ABI on what insures could ask applicants to assess the risks of their health and but the legacy of this discrimination still really lingers. And and I just wanted to read a quote from one of our research participants to illustrate this.

 

So he said “Prior to being positive, my partner and I changed from individual life policies to a joint policy. Sexual orientation meant that our premiums went from £11 to £15 a month to over £30 each. We were told we were listed on an impaired life register. And this was in 2002. And prior to my diagnosis, but as a result of that, I’m fearful of coming clean with insurers.” So, I mean, I when I heard that I just couldn’t believe it. And it was also just like, this is 2002 It wasn’t that easy. I mean,

 

Kathryn Knowles

It makes your stomach turn. It grips your core.

 

Rosalie Hayes 

Yeah. So I mean, so that was incredibly shocking. And for people living with HIV, they just couldn’t, can’t get cover, as well as having to deal with stigmatising attitudes and behaviours. So another research participant said when he disclosed his HIV, “The advisor seemed shocked that I had HIV. It was if as if you don’t look like you have HIV. The look on their face was one of horror, it was so uncomfortable.”

 

So, understandably, given these experiences, many people with HIV are reluctant to take out insurance policies. And I do think it’s important to give credit where it’s due and acknowledge the insurance access is considerably better now than it used to be. But I think that also just shows like what kind of low bar we were starting from, because today, many people living with HIV still have applications refused or offered a premium, that is triple quadruple the standard rate. And there might be a good reason for that. But they often get very little explanation as to why that is, and that, you know, further perpetuates this perception that insurers discriminate against HIV. And I also want me to pick up on the statement, sorry if I’m talking too much, but the

 

Kathryn Knowles 

Go for it, go for it.

 

Rosalie Hayes 

This treated like any other pre existing condition statement. I would challenge this. Because I would say that HIV isn’t, is still isn’t treated like other illnesses entirely. So we still see HIV included as an exclusion on lots of policies. So I think most recently I saw one on an accident sickness and unemployment policy. And I just can’t understand why HIV is singled out in this way when other conditions aren’t. I just, I just don’t understand how it’s justified. And you know, we don’t, we don’t see anywhere on the policies like why, why is it HIV is you just can’t claim for it.

 

And while industry guidance on this has changed, there’s still critical illness cover policies where you can claim on a policy if you’ve acquired HIV, but only if it was your occupational exposure or assault, and the underlying stigma and blame attached to those exclusions, just undeniable and in my view, actually saying that if you get HIV through sex which the majority of people do, it’s your own fault. But if you want, for a heart attack you wouldn’t be told you couldn’t claim because you know you’d have too many high cholesterol meals over your lifetime. So it’s just incredibly stigmatising. And I do think these exclusions are quite shameful to the industry. And I also think they would probably qualify as unlawful discrimination under the Equality Act, but I just I don’t think they have been challenged in court.

 

Kathryn Knowles 

I’ve been so well behaved, I’ve been quiet.I  will continue to behave but I do want to pick up on a few things myself as well. So I mean, obviously the latest guidance from the ABI was in 2015. I could be wrong  but I think there’s been probably some quite significant developments in the last five years in regards to treatments, medications and data in regards to people living with HIV. And and basically in a sense, how healthy they can be. And so I do think sort of like something that’s five years out of date, and saying five years ago that HIV was now being treated by insurers, like any other pre existing condition is not accurate for what was happening five years ago within our industry when it came to underwriting. And, and I’ve got to say as well, I think that there has been incredible things happen in our industry, you know, as you say, it was a very low bar to start with. But there has been incredible things and I will go through a bit more in regards to what I tend to talk about on these podcasts.

 

But there is still and I don’t say this lightly, and I will come on to why I’m saying this in a bit. There is still a stigma, I believe that is attached to people that are living with HIV. And there’s a very specific reason I say that I said, I wouldn’t say that lightly at all. And there is an, I’ll come on to that very, very soon. So for people who are listening, who are living with HIV, or just generally anybody who’s listening and wants some advice, if somebody is applying for insurances and they are living with HIV, the insurer’s going to want to know, well most insurance company want to know these main things.

 

They’re going to know want to know when the person was diagnosed. So the longer you’ve had HIV, the higher in a sense, the premium increases are likely to be if you’re going to go for insurances. They’ll want to know if you’ve been diagnosed in the UK. With the CD4 counts, and it’s the kind of thing if the higher the better. So you can usually get insurance if you have a CD4 count of 300 or over, but ideally, we want to see it around the 500 or 600 mark or above. The viral load, again, ideally, should be undetectable. They’ll want to know things like your medication. So another thing as well, that we’ve experienced before with people is that fear of anonymity. And again, potentially the stigma. And some people’s GPs don’t know, obviously, it’s only the specialists that know. So I know for ourselves, what we have done is developed very specific routes with insurers. So if somebody comes to us and says, “Well, my GP doesn’t know”, because with an insurance application, it’s standard that even if an insurer speaks to a specialist, they will also send a report about general health to the GP. And that in a sense, that report that goes to the GP will not mention anything about the HIV, so that it doesn’t, need that the data is kept as confidential as possible.

 

We do still find with some insurers, not all, that there is a maximum sum assured that a person is allowed for life insurance, and that there is a maximum term length on the policy. So that could be something like for them they may say, right, you can have the life insurance, but the most we will give you is 20 years. That’s some insurers. It’s not all of them. The other thing I want sort of like quickly chat through is the concept of what’s known as the premium ratings.

 

So I’m very conscious and please correct me Rosalie, if I say anything that isn’t easily understandable, because I know that I’m in the insurance world, and these are things I say quite regularly. So there’s two kinds of ways that a premium is increased when it comes to life insurance. There is what’s known as a percentage loading, and there’s one that’s known as a per mille loading. With the percentage, the percentage is usually the better option, but it’s pretty much better, the better option for somebody who is younger. And what that will be, is an insurer will say, so with HIV, we tend to find that premium loadings can start anywhere from 50%. So what that would be saying is right, if you’re going to have this insurance, and if it’s a 50% loading on the premium than if it was £5 originally, then what you do you would times that premium by 1.5. So the £5 becomes £7.50. And if it was 100% loading you times the original premium by 2, so £5 becomes £10.

 

So in in some ways, the premiums don’t necessarily have to, when when you sometimes think you know these percentage loads in 100%, you can kind of automatically think that’s going to be really harsh, actually. But the fact of the matter is, is that the life insurance at the moment, I say at the moment, so you never know if coronavirus might change. Life Insurance is ridiculously cheap at the moment. So if it does increase by percentage, whilst it may feel unfair, and it may not have been explained properly, it’s possibly, is probably the premium is still within quite an affordable range for for lots of people. The percentage loadings can go a lot higher. It really depends upon the control of the HIV and a few other factors as well.

 

Rosalie Hayes 

I’m correct, I think in saying that most insurers shouldn’t be asking how you acquired HIV generally.

 

Kathryn Knowles 

No, not at all. It’s not something I mean, I’ll be honest, we’ve had some people speak to us and when they’ve come to us, they have just been very, very open as to the reasons as to why and but it’s certainly not something an advisor or an insurance company is going to be asking as to why. The other thing is the per mille loadings that can sometimes be better for people who are older, not always but sometimes. Essentially you get, your premium is increased by every £1000 worth of cover that you take out. So if somebody is wanting to protect a mortgage of £250,000, that is where you’re going to see increases. And people are going to apply to insurance and they’re not going to know right okay with this insurer.

 

If I’m if I have HIV there are per mille loadings which is extra money for every £1000, and this one over here has a percentage, people aren’t going to know that. So they’ve possibly gone to an insurer with a per mille and seen an astronomical price for the premium. And it’s just potentially knowing a little bit more about what goes on in the background for these insurers, as to knowing which ones are the right place, you know, it shouldn’t be your astronomical figures really. And if it is, then it’s it is really worthwhile speaking to somebody.

 

But just going back to something as well that you’ve said Rosalie, so, so most protection providers but one, don’t have HIV exclusion. And what I’m really pleased to say is that Alan is currently in talks with that provider right now. And we are finalising, in a sense, the removal of that exclusion. So that’s a really, really positive thing that’s happening. And in regards to things like, so that’s such one type, so in regards to accent sickness and unemployment cover, you are completely right. Some of them still have that very specifically named HIV exclusion, like they would do as well like specifically name depression and anxiety sometimes, but all of them all accident sickness and employment policies will exclude pre-existing medical conditions, for at least the first year or so. And but yes, it does seem very strange that HIV is named. So specifically, when depression is quite, you know, potentially, what is it one in five people, one in four people have mental health conditions. So depression is something that they could regularly see. Whereas HIV isn’t something that’s going to be just.

 

Rosalie Hayes 

Yeah. And it’s not as prevalent. I think, I mean, there’s around 100,000 people living with HIV in the UK, and then I include undiagnosed people as well. So it’s a much smaller group. Yeah.

 

Absolutely. So I do have a bit of a case study. Well, I have two case studies. And the first one I will be throwing right at you Andrew as well. But if you want to say something first off the last bit,

 

Andrew Wibberley 

Yeah, not just as a delaying tactic. For me, just to come just to pick up on some of both points, but especially Rosalie’s so I guess the first thing is that report. I think it’s that’s, that’s available on your website still, right?

 

Rosalie Hayes 

It is yeah, so google National Aids Trust HIV and finance, it will come up.

 

Andrew Wibberley 

I haven’t read it in the last week. I do remember reading it a couple of years ago. And so, but I would certainly recommend it to anyone kind of anyone who’s listening to this, it’s definitely worth listening to you. And honestly, as I say, not just from the HIV underwriting perspective, but sort of that broader thing of how some of those insights, I think you can easily transfer to other areas on the API and their work, just to be clear on that, I think the 2015 I think the 2015 Report, I’m always wary of exactly what the things are called. But let’s call it a report and I apologise for being wrong, was an attempt to to go this is now this should be treated in the same way as any condition cancer, diabetes, anything else it shouldn’t be treated in a different way.

 

So there is no place to kind of update now, clearly there will be from time to time, occasions where they go and look at conditions specifically and mental health is currently being looked at by the ABI. So I think just on that to say, it doesn’t mean, as you’ve highlighted really Kathryn, it doesn’t mean that insurers have stopped doing stuff on HIV, probably quite the opposite. But almost it becomes seen as something where I guess in theory, the commercial insurance market should work to give the best results best outcomes for customers, aided by the legislative kind of cliff, whatever the positive word for that is, the Equality Act and things like that.

 

And I think the Equality Act, then is worth talking about because I think a lot of this and a lot of the things that may be leading us into the case studies Kathryn as a always where where we say different insurers do different things on conditions. There’s there’s an element in there of going well, and probably the link to coronavirus and the government following the science. And guess what, there’s a lot of different scientists, is a really good insight probably into what different insurance underwriters have when they make decisions on what to do with something. So you can almost, you can find a scientist or economist or whatever to support pretty much anything you say.

 

But there’s that there’s that second level. So quality requires you to make a reasonable decision for that individual. And it requires your company to do that, signposting or pointing them towards another company isn’t good enough to quite to make you qualify with the Equality Act. And I think sometimes, there’s almost that over reliance from parts of insurance that people like you, Kathryn and others will step up and go, but we can help you find something and that’s great, that exists, but lots of people, as I guess we would all know, wouldn’t have the energy to make that second call or to kind of have to believe, frankly, that person who says, “Oh, you should try this out with these other people”. And I think, so just that reminder that, you know, while different approaches are entirely valid, are what will happen for any condition, seemingly more so for HIV than others. There’s still that absolute need to make your decision be reasonable for that individual. Maybe if I throw back to Rosalie to just kind of do your..

 

Rosalie Hayes

The Equality Act presumption for insurers is that it must be this is paraphrasing, but it must be a reasonable decision based on relevant, reliable data. And I think that’s really key because you know, the issue for a lot of people is that they don’t get to see the data that these decisions are based on. And they might be you know, they might ask for an explanation as to why they’ve been refused or charged in premium, and they could just be told, oh, well, you know, there’s high risk for people living with HIV of dying and and to them that, that doesn’t like necessarily reflect their life experience. And also actually most mortality studies now show that people with HIV have normal life expectancy.

 

And so I think that’s why the work that you’re doing through the underwriting and stream of access to insurance working group is so important because the first step of being able to understand if insurers are complying with the Equality Act is actually getting, having some transparency around that process. And we can’t really just, you know, be told, oh, yes, no, we’re complying with the Equality Act, but there’s no you know, we don’t we can’t see that and it’s difficult to hold people to account. And then, you know, we recognise that might well be, but we need to see the evidence of that rather than just taking it.

 

Kathryn Knowles 

Okay. Then. Are you ready, Andrew?

 

Andrew Wibberley 

Right. I think I’ve stretched it out, I’ve stretched it out for as long as I can. I will also say what I hadn’t heard and I really like the analogy to the high cholesterol and heart attack. And I entirely take that on board. I do, I think, yeah, I, you can get numb to kind of with anything on this, you can get numb to the statistics and sometimes the medical science but that, definitely,

 

Kathryn Knowles 

Andrew, stop stalling.

 

Andrew Wibberley 

So I’m going to steal that and speak very slowly. Tell me your case study, Kathryn.

 

Kathryn Knowles 

So this one is definitely one that is very, very relevant. It’s a gentleman that came to us last week. And this is the one where to me, though is this is very, very much linked to there’s a stigma that I think still exists. And I’m not saying that this is something that’s embedded specifically within a particular insurer or anybody. I just think it’s something that, it just doesn’t make sense. So basically, so we had a gentlemen  come to us last week because he’s been declined by an insurer very recently for having HIV.

 

Something just to explain to everybody as well, as with coronavirus happening right now basically a lot of insurers are changing their stances as to who and who can and who can’t have insurance. And what they’re doing is they’re putting the maximum loadings, so if somebody has maybe one health condition that will maybe equal an extra 100% on the premium, if they have something else, that may be an extra 50%, and then another 50% for something else, and those combined will put them over their max rating, which some insurers are looking at individual cases to kind of look around them, just in case it is medical conditions that have no link whatsoever to coronavirus and potentially extra mortality rates.

 

So anyway, so this gentleman, he came to us, so he pushed them to give them a reason the insurer and we have actually seen the response from the insurers. So which is why I’m saying that I’m quite happy to use the words that I have used so far. And the insurers again, not saying it verbatim, but basically they said that at the moment because of coronavirus they are having to make difficult decision at all times and trying to prepare themselves, because they need to figure out who’s the vulnerable groups who’s the at risk groups due to coronavirus. So they likened him having HIV, as to him being somebody who’s in his 80s or as a diabetic. They’ve said that they don’t know, basically the problem, that they have is that everything is based upon science. And at the moments basically, there’s not enough science to tell them if people who are living with HIV are at just as much a risk as people who are diabetic, who are at the moment statistically seeming to be at higher risk of dying from coronavirus.

 

So they’ve basically lumped him in with over 80s, with diabetics, and it states quite clearly that what their decision is is based upon guesswork upon what they think is maybe a risk. As far as I’m aware, I haven’t seen any kind of data studies in regards to people living with HIV being at high risk from coronavirus death. I’ve seen the elderly, diabetics, high blood pressure, high BMI. I’ve not heard anything about HIV and yet this insurer has making a blanket decision to decline people with HIV based on what seems to be, not evidence, and from what we’ve mentioned previously, doesn’t seem to be a fair and reasonable decision.

 

Andrew Wibberley 

No, I think and I, you know, I, I mean, yeah. I’m entirely sympathetic in agreement with you, Kathryn. So sure, long and short of it, I think. And I, I absolutely, I am very happy if someone reaches out to anyone of us three and shares the study that shows that what I’m saying, Kathryn’s suggesting, and Rosalie says is up to her is incorrect, but certainly I haven’t seen anything to suggest that there’s a clear link. And I think always with this, you have to bear in mind we all read the underwrite out I mean, Kathryn, you spoke through better that I probably could have, the kind of the counts that we look at the, you know, the CDe and things like that.

 

And I absolutely can imagine there are, that there will be a link between people who are really struggling already with, not just HIV, but other conditions. And clearly that’s, you know, so I can’t believe that. But when you look at the kind of the group of people that insurers are already generally prepared to accept after underwriting. Yeah, I haven’t seen any evidence. And as you say that they went to this world of guesswork versus estimates versus reasonable assumptions. Right. And I think that’s the challenging bit. For if you’re relying on Equality Act, then clearly as an insurer then then it’s how at what point does that become a reasonable assumption. And I personally, I would be uncomfortable saying that that’s a reasonable assumption based on anything else out there today.

 

Rosalie Hayes 

Yeah, and I say that, you know, for the HIV sector, we’re also obviously very interested in understanding what the risk of COVID is to people living with HIV. You know, there’s been lots of discussions about this. And we’re all trying to really stay on top of the research. And there is some studies going on at moment, looking at COVID patients who also live with HIV, but they’re very, very small samples. And, you know, like, groups like 30 people or maybe more. So it’s very difficult to draw any conclusions yet.

 

But what I think it would be reliable or reasonable to rely on, and is that the British HIV Association issued guidance for people living with HIV on whether they should shield or not, and the key recommendations were that people living with HIV should be considered to be at high clinical risk of COVID-19, if they have a CD4 count, less than 50 or if they’ve had an opportunistic illness in the last six months. So often that can be if they’ve maybe an AIDS defining illness, people with a significant multi morbidity. But otherwise, you know, they’re just saying you should observe the rules like anyone else. So observes a distancing standard at home if you can, and that sort of thing. They’re they’re not, they’re not recommending any additional precautions for people who don’t meet those criteria. So I would say that that’s maybe what insurers should be relying on because it’s what the rest of the HIV sector is relying on and advice to people living with HIV.

 

Andrew Wibberley 

Yeah, it’s interesting, that shielding piece I saw, I wasn’t aware of the details of that. And I guess, I guess I don’t have to apologise for that, because I’m not in role at an insurer. But I would hope that people who are in insurance are aware of things like that. I do think that that ought to be a really good estimate or proxy. Again, not just for HIV, but especially for HIV around things like this.

 

I appreciate the shielding guidelines undoubtedly have flaws and undoubtedly have been made in a hurry and everything like that. But but I think is a, if you’re starting from a, let’s start from there and then work out where to, you know, if there’s evidence to disprove that I absolutely agree. And that’s a really logical and understandable place to be right. And and that’s part of where we can fail

 

Kathryn Knowles 

Getting towards the end of the show, in a sense. So I’m going to give us two more positive case studies. So for people just to hear what can actually happen, and what can be good. So it’s not all doom and gloom, and I do say that whilst I’ve had said that last bit, which is I’ll be honest, obvioulsy I’ve been critical of the insurer, and that is that has sent that, there have been some really, really good steps and it has been before coronavirus. There was a really good momentum of changes happening. I think that about the six months prior to coronavirus came in and lots of insurers started to really, really up their game and be and start to listen to the fact that you know, HIV is a completely different illness that what is was decades ago.

 

First case I’m going to do on life insurance. So just very quickly, it was a female life in her mid 30s. She’d been diagnosed four years prior to speaking to us, her CD4 count was 380. And she has an undetectable viral load. So she, we arranged for her to have the level life insurance. So that means it stays the same, in the sense sum assured the entire time. So 250,000, over 20 years, and that was £18 per month. So I’m using these some of these as an example of just you know, what is potentially available out there. And depending upon obviously there’s a few different factors as well.

 

And then the next one is the case stufy for income protection. And I’m incredibly proud to say this was done by my colleague, Krystal Skelton, and she is the first advisor in the UK to arrange an income protection policy for someone living with HIV. So this was for a male in his mid 40s. And he’d been diagnosed for seven years and his CD4 count was near 1000, an undetectable viral load. So he protected £2000  worth of his income every month, so that woule be paid for him, and that was £60 per month for the cover. So there’s quite a difference there. So for anybody who’s listening to this and isn’t familiar with insurance, so income protection is much higher in price than life insurance because you are much, much more likely to, to claim on an income protection policy, than you are life insurance. There was also as well, in regards to this premium, the factor into it that the person is living with HIV. It’s very good. It’s a really good start.

 

We’re not saying it’s perfect. And the reason I’m saying that is that there was a minimum three month deferred period on the policy, which means that the person needs to have been ill for three months before they’re allowed to claim on the policy, which just kind of it kind of gives that impression that they would assume that maybe the person is more likely to be ill more often for short periods of time than someone who doesn’t live with HIV. And, and then there’s also a maximum two year claim period. So that means for every time that that person is eligible to make a claim on the policy, they will replace his income for two years at the most. Important thing to point out as well with this policy is like I’m saying some maximum loadings have been put in so before where people may be eligible for this policy, because the maximum that insurers are allowing because of coronavirus, it is becoming harder and harder to get this policy type.

 

So I know I’m a specialist, so it kind of sounds as if I’m always saying you know, come chat to me, but you know if it’s someone is in that situation and they’re wanting that, it is such a good idea to make sure that you are speaking to a specialist who can really explain the differences between an income protection policy and accident sickness and unemployment policy, because their can be sometimes a bit of confusion as to what they are and what they do. And and just really make sure that you are getting the absolute best option that’s available in the current market. Does that sound okay, Rosie, that those kind of options or is this something that glaring out that you think you know what, I’d really want that changing?

 

Rosalie Hayes 

Yeah, I mean, I think you’d like say it’s really is pretty groundbreaking. It is now available. I mean income protection was one of the policies that I picked up on in our research three years ago that wasn’t available at all to people living with HIV. So, you know, it’s, it’s really heartening to hear that it is now available. I would just say that insurers do, you just need to keep bearing in mind their obligations under the Equality Act, they’re making decisions around who to offer certain policies to it needs to be based on good evidence. And one of the things that we found was that there wasn’t very much data around how HIV affects absence from work. But the data that we did have, showed that for people who, you know, are working anyway, that generally like pretty well, and they we didn’t find much difference in terms of sickness absence time.

 

So I would just say for insurers to keep revisiting those restrictions. And, you know, also I’m always very encouraging if insurers want to fund research looking at particular issues, and I really think they should, because, you know, if they’re going to make decisions, they need to make sure they’re based on data and charities, unfortunately, can’t just do lots of research for free. But yeah, big shout out to all the specialist brokers who do work really hard to get access to insurance people, particularly yourselves. And I would really encourage if people living with HIV are listening, yeah, I would always say go to a specialist broker if you can, because you just going to get the best kind of deal probably with their support.

 

Kathryn Knowles 

Andrew, I think it’s your bit now.

 

Andrew Wibberley 

Yeah. So yeah, I guess I second all that from Rosalie. And I think the the piece there about evidence is really important, and I guess a willingness at some point It’s not okay, just to go there’s not evidence. I guess there’s kind of a bit, which is the uncomfortable truth probably. And I sat there, you know, I sat there as Head of Underwriting at a reinsurer and gone well, there’s no evidence so so what what do you do? Well, it’s hard to change things if there’s no evidence, but…

 

Rosalie Hayes

and I would say, you know, like with COVID, it’s, it’s, you know, I think it might be more legitimate to say, we’re doing certain things because there’s not enough evidence. I mean, it’s a very recent thing, but HIV has been around for over 30 years, well while longer, and to say, Oh, you know, we just don’t have any data. I don’t think it’s good enough.

 

Andrew Wibberley 

Moving on to, to me, a bit of an outcome for me. So I’m going to be stepping away from the podcast after this episode, and probably a bit of a shock if you’ve been listening to episodes 9 and 8 and I have really mixed feelings about it, probably entirely encapsulated through the last half hour. I’ve, I’ve loved doing it and I think it’s been a great experience for me personally, but also we’ve got some really good conversations going. It’s mainly just squeezing five days work into three. So the sort of coparenting, which I hate myself even more, just that just the fact that I almost said that word shows kind of where how, how screwed my mind is at times as we try and juggle replace plates and all that. So, yeah, I just can’t, I just can’t fit everything in, and I’m having to make hard decisions. And this is one of those I’ve taken.

 

And I’m really hope that other people kind of step forward in different ways. And I know, Kathryn and I, and Kathryn has kind of really exciting plans and some amazing guests coming up. So I think the plan is that Kathryn will continue this. I’ll be one of those eager Thursday morning listeners and kind of wish it all the success that it deserves. I genuinely think the timing of these conversations has never been more critical. And there’s so much movement and focus on underwriting decisions at present. I guess there is a bit for me professionally as well, that being brutally honest, the insights I can bring into this have lessened at the moment, because as we’ve seen so much change, and there’s only so many different ways I can say, that’s why it’s so important to speak to a specialist advisor. Because these things are changing week by week at the moment.

 

And that’s kind of you know, there’s no hiding the fact that it’s exciting from from some ways, but it’s also kind of it just needs that that absolute focus. So yeah, I encourage you all to join me and keep listening and I apologise for all the ums and ahs that you’ve heard over the last few months. I hope the Kathryn will let me come back on every now and again to grill me on more difficult case study today. Yeah, but that’s that’s that.

 

Kathryn Knowles 

Absolutely. I think that everybody’s gonna be sad to see you go but I have to say I’m not going anywhere I’m still going to be rambling on, I’ll still be having people on and chatting through things. Rosalie it’s been lovely having you on I think especially with this subject, I think we could certainly speak again in probably in the not too distant future, as well about you know, how things are potentially changed or not changed and see how we can go forward.

 

We’re going to start closing up with our famous truth or lie feature which everybody absolutely adores. So we’re going to do a bit of post lockdown truth or lie. So mine is that my truth is, is it my truth, is it my lie, is that the first thing I’m going to do post lockdown is go for spa.

 

Andrew Wibberley 

My first thing that I’m going to do post lockdown is to go ice-skating.

 

Rosalie Hayes 

I think my first thing probably go to my absolute favourite local pub well not really local anymore, but this Salisbury Hotel on Green Lane, spent many happy hour there.

 

Kathryn Knowles 

Very nice. Nice. Well thank you all for listening and thank you Rosalie for joining us, it’s been lovely to speak with you and hear about the views of people living with HIV. I’m going to be back in two weeks with Season 2 of the podcast, Season 2 now that Andrews gone. Yeah, he’s all Season 1 go to Season 2 on my own little shed a tear, and focusing more upon people’s stories of health insurance claims and how we can support people with more than just money. If you’d like a reminder of the next episode where I’ll be chatting with another guest, please do drop me a message on social media or visit the website www.practical-protection.co.uk. Thank you, Rosalie.

 

Rosalie Hayes 

Thank you.

 

Andrew Wibberley 

Thanks Rosalie.

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Episode 10 | HIV

Hi Everyone,

In this episode we are chatting about HIV with our guest Rosalie Hayes from the National Aids Trust. Rosalie is chatting about the insurance from the viewpoint of people that are living with HIV, the barriers that have been faced, where insurance seems to be getting better and how there needs to be a clear focus on fair and reasonable terms of cover.

Our 3 key takeaways,

1. There are around 100,000 people living with HIV in the UK.

2. The need to ensure that all insurance decisions adhere to the Equalities Act.

3. Two case study clients who are living with HIV and were able to access life insurance and income protection.

We always love to hear from you, please do let us know your thoughts of the podcast and if you like what we are doing. In the next episode, Kathryn will have her first solo outing with another guest for the start of Season 2.

Kathryn Knowles 

Hi, everyone, this is Episode 10. And today we have our fourth guest on the podcast Rosalie Hayes, who works for the National AIDS trust. Hi, Rosalie.

 

Rosalie Hayes 

Hi, lovely to be here. Thanks for the invitation.

 

Andrew Wibberley 

Hi, Rosalie.

 

Kathryn Knowles 

Thank you very, very much for coming on. It's really such an important topic especially I think even now, in the midst of everything with a lockdown. It's really, really important that we talk about this so. So yeah, so how have you both been? Have you been this weekend?

 

Rosalie Hayes 

Yeah,  it was good. I had I've been feeling pretty overwhelmed by the events of the last few weeks, but also pretty heartened by the amount of people who are kind of speaking out against systemic racism in the UK as well as the US. So I actually joined the virtual  Black Lives Matter virtual protests on Sunday, which was really inspiring. Yeah. So they organised it via zoom. And they had like footage from the protest, and they were showing petitions and encouraging people to donate to organisations. And yeah, it was just really, really informative and inclusive. And yeah, it's very inspiring. So that was really positive.

 

Kathryn Knowles 

Brilliant, I think it's fantastic. Well, we've set up a virtual book club for doing lockdown. And it's my turn to choose next month, and I'm wanting to choose a book about systemic racism within the UK and everything that I'm trying so hard to find, and it's sold out everywhere. So I'm trying really hard. I've got a few different books that have been suggested to me. So absolutely. I think education is so important at this time. Yeah.

 

Andrew Wibberley 

Yeah, I've just if I seem even more discombobulated than normal, I've just been trying to do the chat with my seven year old and five year old about it all, which is going okay, and Alex really liked the statue coming down here. He understood why that was a good thing. Or, you know, yeah, how you could see this either way. And then even my five year old just got very concerned that what what if? What if there were fish under where the statue went into the water?

 

Andrew Wibberley 

Yeah, and you kind of you prepare every style, you should make your own opinion on these things. I'll slightly guide you, but you should, you know, get to the right answer in your own way. And then yeah, that was that. Then I was like yeah I've got a podcast now. Sorry. Yeah.

 

Kathryn Knowles 

Good valid points.

 

Andrew Wibberley 

Yeah, I think I think I think we're getting there. But it's fascinating. Yeah. I mean, it's, as you say, Rosalie, it's yeah, inspiring. And it is it's nice. It's actually quite therapeutic. I think, having children to kind of just get back to basics and almost have an excuse to relearn stuff, which I think is a key theme.

 

Kathryn Knowles 

Yeah, well, my kids are just so shocked. You know, when I was saying to them about what is happening and I say to myself because of this colour of someone's skin and they're just looking at me like what? You know, it's just such a concept that they just think what? why? why would that ever be? You know it they just can't fathom why that would be an issue and it's just it's, it's so sad in some ways as well to have to teach children why it's it's been an issue and why some people are bad that way and you know and judgmental on different things and it's very, very difficult. But we are moving on to more the podcasting things and so we had our truth or lie feature last week, Andrew, Do you want to do a recount of of it all?

 

Andrew Wibberley 

Yes, I did. I can't remember why we had this theme. There must have been some logic but I, my truth or lie was that I was first in the queue to our local McDonald's when it reopened recently. Because in Chelmsford, we seem to be the centre of global McDonald's almost, we had five reopened as the test site. So mine was a lie although I have, we have a been since it's reopened, and it was amazing. I am salivated Ah, the 20 minutes was appalling. I was appalled by myself. Yes so so that's a genuine confession I've kind of I've seen people do who on Earth are these people doing? So but it was a lie. I wasn't we weren't quite there

 

Rosalie Hayes 

Yeah you would have liked to be.

 

Kathryn Knowles 

Well, mine was the truth and I think it was my truth so I set off this whole thing about the the healthiness in a sense, so yes, so anybody who knows me I'm six foot tall. And now I am what people consider to be slim. But yes, I used to be size 22 and weighed about 15 stone. And the reason is and in all fairness, I don't care any doctors or underwriters, or whoever's listening, this is the reason okay. I had an I kid, you not, I had 357 gallstones.

 

Rosalie Hayes 

Oh my goodness.

 

Kathryn Knowles 

And I couldn't eat properly for about six months. So as I was like I've got bigger and bigger and bigger and then for six months I literally could eat like rice and chicken that was what the only thing I could eat without just being horrendously ill. And they eventually they were like, okay, let's check your stomach out and and yeah, they found all these gallstones took my gallbladder out and then everything was fine the weight started dropping off and everything was fine. So I'm not sure of the exact relation, but that was the timeline of events. And yeah, I'm sure somebody will probably contact me and say that's impossible but it is possible I lived it, I've got scars on my tummy to prove it. So yeah. But anyway, so that is our truth, or lie feature film from last week. So Rosalie, van you please let our listeners know a bit about yourself, please.

 

Rosalie Hayes 

So I'm the Senior Policy and Campaigns Officer at the National AIDS trust. And, and I've been working there for just over three and a half years. And so we're a policy and campaigning charity that work on behalf of people living with HIV and working kind of improve access to services and you know, fulfilling their rights. And I've led on a kind of variety of projects.

 

So ranging from advocating for access to infant formula for mothers living with HIV via the NHS. And I worked monitoring the HIV response across Europe and Central Asia in collaboration with the European Centre for Disease Prevention and Control. And I also currently provide casework support and advice to other HIV organisations who are supporting people who've experienced HIV discrimination. And, and of course, I lead on our work advocating for improved access to insurance for people living with HIV. And so that's work and outside of it I like to cook and I do a lot of yoga and my most recent lockdown hobby is skateboarding. So just take, a fairly impressive selection of bruises as well so that for that

 

Kathryn Knowles 

That makes me like, I'm starting to learn the flute, but that kind of puts my flute to a shame. I'm seeing you on like railings now.

 

Rosalie Hayes 

Oh no, I'm still just like working on staying up right.

 

Kathryn Knowles 

Good for you, that's awesome.

 

Andrew Wibberley 

Well done well done. I want to ask like what your best, I feel like as an underwriter I should have a question for everything. Just because I found a new reason to rate someone. What's your most impressive trick. Resist, I'll resist the temptation will say we will bring you back both there's ever a skateboarding episode. So I think genuinely and I fear of always saying this to people who come on, Kathryn and I were really right from the start kind of keen that you would be the kind of ideal guest for what we're trying to do here. So really, really pleased we've got you on today.

 

We've all worked with each other in different guises, I think at different stages around that concept to kind of really fight for fairer access to insurance. And I think whenever I've worked with you, I've been really impressed by your, both the depth of your knowledge and kind of global knowledge as you've already highlighted, and the knowledge from different policy areas, which for people like me is we just don't get insight to. But also, I guess, to the title of this podcast, that kind of a practical understanding and the practical realities. And I think that's one of the things I always take when I work with charities is probably before I'd done it as much as I do now, there was kind of this theory that there wouldn't be the realistic understanding. Well, we can't we can't do everything for everyone.

 

I think when I work with people like you and Leo and other people like that, sorry, Leo from Macmillan, they're absolutely use that understanding, but it's also that well, you know, we still need to challenge and scrutinise, and that understanding makes it even more powerful. Think on HIV and HIV specifically, it's been a really interesting area for anywhere in insurance partly because so for the whispers quietly, two decades, I've worked in insurance. We've, you've generally heard insurance kind of coming out positively talking about what they're doing for HIV now that they weren't doing for HIV three or four years ago. And the obvious challenge there is whether we've moved fast enough, whether this is the endpoint, where we are today, or whether there's always kind of something in the bank that we could be doing now. And it is also, I guess, just generalising for a second, I think then it becomes a really relevant point for some of the other things we've talked about. Whether that's stuff like vaping and e-cigarettes, or you know, the main thing today coronavirus, where, when new risks emerge or when new things happen. How will you make sure we don't always have to wait kind of 30 years for data to emerge to do the right thing.

 

So there's, I think there's both an interest in HIV. But even if you aren't totally interested in HIV and listening to this, and I think you can easily overlay a lot of logic into other conditions. And probably the last bit for me, intro wise and I think why it's so important that we get this right was just reflecting the, the insurers relationship with HIV over time. In 2015, the ABI published the last I think it's fair to say the last guiding principles on HIV, which emphasise that and I quote, "HIV is now treated by insurance like any other pre existing condition".

 

Now, that seems kind of, from my perspective, interested in yours, an obvious but true statement, and even in making that statement, suggests it wasn't always the case. And I think for underwriters, business development managers, advisors, it's worth remembering when people apply for cover that when they, if they've applied for cover at any point before, the approach for life insurance may have been very, very different. So the questions that have been asked might be kind of shocking, frankly, compared to what's asked today. But that's probably a good point to let you speak a bit recently about how you see it and how that compares to your community.

 

Rosalie Hayes 

So, um, back in 2017, I ran a survey as part of our research into access to insurance for people living with HIV. And we found that 60% of respondents had avoided at least once in the past five years applying for a financial product and because of fears of high costs, or fees or stigma, and, and we from looking at the responses, we felt like fears can be linked in part to a lack of awareness of what insurance products are now available. And but I think they also need to be understood within two contextual factors.

 

So one being past experiences, and the other being the current levels of stigma experienced by people living with HIV today. So just to touch on the past experiences, and as some of your listeners may know, for many gay and bisexual men, invasive lifestyle questionnaires, mandatory HIV testing heavily loaded premiums, and a refusal to accept the validity of long term relationships, were a common experience when seeking life and protection insurance in the past. And this did change with the introduction of strict guidelines by the ABI on what insures could ask applicants to assess the risks of their health and but the legacy of this discrimination still really lingers. And and I just wanted to read a quote from one of our research participants to illustrate this.

 

So he said "Prior to being positive, my partner and I changed from individual life policies to a joint policy. Sexual orientation meant that our premiums went from £11 to £15 a month to over £30 each. We were told we were listed on an impaired life register. And this was in 2002. And prior to my diagnosis, but as a result of that, I'm fearful of coming clean with insurers." So, I mean, I when I heard that I just couldn't believe it. And it was also just like, this is 2002 It wasn't that easy. I mean,

 

Kathryn Knowles

It makes your stomach turn. It grips your core.

 

Rosalie Hayes 

Yeah. So I mean, so that was incredibly shocking. And for people living with HIV, they just couldn't, can't get cover, as well as having to deal with stigmatising attitudes and behaviours. So another research participant said when he disclosed his HIV, "The advisor seemed shocked that I had HIV. It was if as if you don't look like you have HIV. The look on their face was one of horror, it was so uncomfortable."

 

So, understandably, given these experiences, many people with HIV are reluctant to take out insurance policies. And I do think it's important to give credit where it's due and acknowledge the insurance access is considerably better now than it used to be. But I think that also just shows like what kind of low bar we were starting from, because today, many people living with HIV still have applications refused or offered a premium, that is triple quadruple the standard rate. And there might be a good reason for that. But they often get very little explanation as to why that is, and that, you know, further perpetuates this perception that insurers discriminate against HIV. And I also want me to pick up on the statement, sorry if I'm talking too much, but the

 

Kathryn Knowles 

Go for it, go for it.

 

Rosalie Hayes 

This treated like any other pre existing condition statement. I would challenge this. Because I would say that HIV isn't, is still isn't treated like other illnesses entirely. So we still see HIV included as an exclusion on lots of policies. So I think most recently I saw one on an accident sickness and unemployment policy. And I just can't understand why HIV is singled out in this way when other conditions aren't. I just, I just don't understand how it's justified. And you know, we don't, we don't see anywhere on the policies like why, why is it HIV is you just can't claim for it.

 

And while industry guidance on this has changed, there's still critical illness cover policies where you can claim on a policy if you've acquired HIV, but only if it was your occupational exposure or assault, and the underlying stigma and blame attached to those exclusions, just undeniable and in my view, actually saying that if you get HIV through sex which the majority of people do, it's your own fault. But if you want, for a heart attack you wouldn't be told you couldn't claim because you know you'd have too many high cholesterol meals over your lifetime. So it's just incredibly stigmatising. And I do think these exclusions are quite shameful to the industry. And I also think they would probably qualify as unlawful discrimination under the Equality Act, but I just I don't think they have been challenged in court.

 

Kathryn Knowles 

I've been so well behaved, I've been quiet.I  will continue to behave but I do want to pick up on a few things myself as well. So I mean, obviously the latest guidance from the ABI was in 2015. I could be wrong  but I think there's been probably some quite significant developments in the last five years in regards to treatments, medications and data in regards to people living with HIV. And and basically in a sense, how healthy they can be. And so I do think sort of like something that's five years out of date, and saying five years ago that HIV was now being treated by insurers, like any other pre existing condition is not accurate for what was happening five years ago within our industry when it came to underwriting. And, and I've got to say as well, I think that there has been incredible things happen in our industry, you know, as you say, it was a very low bar to start with. But there has been incredible things and I will go through a bit more in regards to what I tend to talk about on these podcasts.

 

But there is still and I don't say this lightly, and I will come on to why I'm saying this in a bit. There is still a stigma, I believe that is attached to people that are living with HIV. And there's a very specific reason I say that I said, I wouldn't say that lightly at all. And there is an, I'll come on to that very, very soon. So for people who are listening, who are living with HIV, or just generally anybody who's listening and wants some advice, if somebody is applying for insurances and they are living with HIV, the insurer's going to want to know, well most insurance company want to know these main things.

 

They're going to know want to know when the person was diagnosed. So the longer you've had HIV, the higher in a sense, the premium increases are likely to be if you're going to go for insurances. They'll want to know if you've been diagnosed in the UK. With the CD4 counts, and it's the kind of thing if the higher the better. So you can usually get insurance if you have a CD4 count of 300 or over, but ideally, we want to see it around the 500 or 600 mark or above. The viral load, again, ideally, should be undetectable. They'll want to know things like your medication. So another thing as well, that we've experienced before with people is that fear of anonymity. And again, potentially the stigma. And some people's GPs don't know, obviously, it's only the specialists that know. So I know for ourselves, what we have done is developed very specific routes with insurers. So if somebody comes to us and says, "Well, my GP doesn't know", because with an insurance application, it's standard that even if an insurer speaks to a specialist, they will also send a report about general health to the GP. And that in a sense, that report that goes to the GP will not mention anything about the HIV, so that it doesn't, need that the data is kept as confidential as possible.

 

We do still find with some insurers, not all, that there is a maximum sum assured that a person is allowed for life insurance, and that there is a maximum term length on the policy. So that could be something like for them they may say, right, you can have the life insurance, but the most we will give you is 20 years. That's some insurers. It's not all of them. The other thing I want sort of like quickly chat through is the concept of what's known as the premium ratings.

 

So I'm very conscious and please correct me Rosalie, if I say anything that isn't easily understandable, because I know that I'm in the insurance world, and these are things I say quite regularly. So there's two kinds of ways that a premium is increased when it comes to life insurance. There is what's known as a percentage loading, and there's one that's known as a per mille loading. With the percentage, the percentage is usually the better option, but it's pretty much better, the better option for somebody who is younger. And what that will be, is an insurer will say, so with HIV, we tend to find that premium loadings can start anywhere from 50%. So what that would be saying is right, if you're going to have this insurance, and if it's a 50% loading on the premium than if it was £5 originally, then what you do you would times that premium by 1.5. So the £5 becomes £7.50. And if it was 100% loading you times the original premium by 2, so £5 becomes £10.

 

So in in some ways, the premiums don't necessarily have to, when when you sometimes think you know these percentage loads in 100%, you can kind of automatically think that's going to be really harsh, actually. But the fact of the matter is, is that the life insurance at the moment, I say at the moment, so you never know if coronavirus might change. Life Insurance is ridiculously cheap at the moment. So if it does increase by percentage, whilst it may feel unfair, and it may not have been explained properly, it's possibly, is probably the premium is still within quite an affordable range for for lots of people. The percentage loadings can go a lot higher. It really depends upon the control of the HIV and a few other factors as well.

 

Rosalie Hayes 

I'm correct, I think in saying that most insurers shouldn't be asking how you acquired HIV generally.

 

Kathryn Knowles 

No, not at all. It's not something I mean, I'll be honest, we've had some people speak to us and when they've come to us, they have just been very, very open as to the reasons as to why and but it's certainly not something an advisor or an insurance company is going to be asking as to why. The other thing is the per mille loadings that can sometimes be better for people who are older, not always but sometimes. Essentially you get, your premium is increased by every £1000 worth of cover that you take out. So if somebody is wanting to protect a mortgage of £250,000, that is where you're going to see increases. And people are going to apply to insurance and they're not going to know right okay with this insurer.

 

If I'm if I have HIV there are per mille loadings which is extra money for every £1000, and this one over here has a percentage, people aren't going to know that. So they've possibly gone to an insurer with a per mille and seen an astronomical price for the premium. And it's just potentially knowing a little bit more about what goes on in the background for these insurers, as to knowing which ones are the right place, you know, it shouldn't be your astronomical figures really. And if it is, then it's it is really worthwhile speaking to somebody.

 

But just going back to something as well that you've said Rosalie, so, so most protection providers but one, don't have HIV exclusion. And what I'm really pleased to say is that Alan is currently in talks with that provider right now. And we are finalising, in a sense, the removal of that exclusion. So that's a really, really positive thing that's happening. And in regards to things like, so that's such one type, so in regards to accent sickness and unemployment cover, you are completely right. Some of them still have that very specifically named HIV exclusion, like they would do as well like specifically name depression and anxiety sometimes, but all of them all accident sickness and employment policies will exclude pre-existing medical conditions, for at least the first year or so. And but yes, it does seem very strange that HIV is named. So specifically, when depression is quite, you know, potentially, what is it one in five people, one in four people have mental health conditions. So depression is something that they could regularly see. Whereas HIV isn't something that's going to be just.

 

Rosalie Hayes 

Yeah. And it's not as prevalent. I think, I mean, there's around 100,000 people living with HIV in the UK, and then I include undiagnosed people as well. So it's a much smaller group. Yeah.

 

Absolutely. So I do have a bit of a case study. Well, I have two case studies. And the first one I will be throwing right at you Andrew as well. But if you want to say something first off the last bit,

 

Andrew Wibberley 

Yeah, not just as a delaying tactic. For me, just to come just to pick up on some of both points, but especially Rosalie's so I guess the first thing is that report. I think it's that's, that's available on your website still, right?

 

Rosalie Hayes 

It is yeah, so google National Aids Trust HIV and finance, it will come up.

 

Andrew Wibberley 

I haven't read it in the last week. I do remember reading it a couple of years ago. And so, but I would certainly recommend it to anyone kind of anyone who's listening to this, it's definitely worth listening to you. And honestly, as I say, not just from the HIV underwriting perspective, but sort of that broader thing of how some of those insights, I think you can easily transfer to other areas on the API and their work, just to be clear on that, I think the 2015 I think the 2015 Report, I'm always wary of exactly what the things are called. But let's call it a report and I apologise for being wrong, was an attempt to to go this is now this should be treated in the same way as any condition cancer, diabetes, anything else it shouldn't be treated in a different way.

 

So there is no place to kind of update now, clearly there will be from time to time, occasions where they go and look at conditions specifically and mental health is currently being looked at by the ABI. So I think just on that to say, it doesn't mean, as you've highlighted really Kathryn, it doesn't mean that insurers have stopped doing stuff on HIV, probably quite the opposite. But almost it becomes seen as something where I guess in theory, the commercial insurance market should work to give the best results best outcomes for customers, aided by the legislative kind of cliff, whatever the positive word for that is, the Equality Act and things like that.

 

And I think the Equality Act, then is worth talking about because I think a lot of this and a lot of the things that may be leading us into the case studies Kathryn as a always where where we say different insurers do different things on conditions. There's there's an element in there of going well, and probably the link to coronavirus and the government following the science. And guess what, there's a lot of different scientists, is a really good insight probably into what different insurance underwriters have when they make decisions on what to do with something. So you can almost, you can find a scientist or economist or whatever to support pretty much anything you say.

 

But there's that there's that second level. So quality requires you to make a reasonable decision for that individual. And it requires your company to do that, signposting or pointing them towards another company isn't good enough to quite to make you qualify with the Equality Act. And I think sometimes, there's almost that over reliance from parts of insurance that people like you, Kathryn and others will step up and go, but we can help you find something and that's great, that exists, but lots of people, as I guess we would all know, wouldn't have the energy to make that second call or to kind of have to believe, frankly, that person who says, "Oh, you should try this out with these other people". And I think, so just that reminder that, you know, while different approaches are entirely valid, are what will happen for any condition, seemingly more so for HIV than others. There's still that absolute need to make your decision be reasonable for that individual. Maybe if I throw back to Rosalie to just kind of do your..

 

Rosalie Hayes

The Equality Act presumption for insurers is that it must be this is paraphrasing, but it must be a reasonable decision based on relevant, reliable data. And I think that's really key because you know, the issue for a lot of people is that they don't get to see the data that these decisions are based on. And they might be you know, they might ask for an explanation as to why they've been refused or charged in premium, and they could just be told, oh, well, you know, there's high risk for people living with HIV of dying and and to them that, that doesn't like necessarily reflect their life experience. And also actually most mortality studies now show that people with HIV have normal life expectancy.

 

And so I think that's why the work that you're doing through the underwriting and stream of access to insurance working group is so important because the first step of being able to understand if insurers are complying with the Equality Act is actually getting, having some transparency around that process. And we can't really just, you know, be told, oh, yes, no, we're complying with the Equality Act, but there's no you know, we don't we can't see that and it's difficult to hold people to account. And then, you know, we recognise that might well be, but we need to see the evidence of that rather than just taking it.

 

Kathryn Knowles 

Okay. Then. Are you ready, Andrew?

 

Andrew Wibberley 

Right. I think I've stretched it out, I've stretched it out for as long as I can. I will also say what I hadn't heard and I really like the analogy to the high cholesterol and heart attack. And I entirely take that on board. I do, I think, yeah, I, you can get numb to kind of with anything on this, you can get numb to the statistics and sometimes the medical science but that, definitely,

 

Kathryn Knowles 

Andrew, stop stalling.

 

Andrew Wibberley 

So I'm going to steal that and speak very slowly. Tell me your case study, Kathryn.

 

Kathryn Knowles 

So this one is definitely one that is very, very relevant. It's a gentleman that came to us last week. And this is the one where to me, though is this is very, very much linked to there's a stigma that I think still exists. And I'm not saying that this is something that's embedded specifically within a particular insurer or anybody. I just think it's something that, it just doesn't make sense. So basically, so we had a gentlemen  come to us last week because he's been declined by an insurer very recently for having HIV.

 

Something just to explain to everybody as well, as with coronavirus happening right now basically a lot of insurers are changing their stances as to who and who can and who can't have insurance. And what they're doing is they're putting the maximum loadings, so if somebody has maybe one health condition that will maybe equal an extra 100% on the premium, if they have something else, that may be an extra 50%, and then another 50% for something else, and those combined will put them over their max rating, which some insurers are looking at individual cases to kind of look around them, just in case it is medical conditions that have no link whatsoever to coronavirus and potentially extra mortality rates.

 

So anyway, so this gentleman, he came to us, so he pushed them to give them a reason the insurer and we have actually seen the response from the insurers. So which is why I'm saying that I'm quite happy to use the words that I have used so far. And the insurers again, not saying it verbatim, but basically they said that at the moment because of coronavirus they are having to make difficult decision at all times and trying to prepare themselves, because they need to figure out who's the vulnerable groups who's the at risk groups due to coronavirus. So they likened him having HIV, as to him being somebody who's in his 80s or as a diabetic. They've said that they don't know, basically the problem, that they have is that everything is based upon science. And at the moments basically, there's not enough science to tell them if people who are living with HIV are at just as much a risk as people who are diabetic, who are at the moment statistically seeming to be at higher risk of dying from coronavirus.

 

So they've basically lumped him in with over 80s, with diabetics, and it states quite clearly that what their decision is is based upon guesswork upon what they think is maybe a risk. As far as I'm aware, I haven't seen any kind of data studies in regards to people living with HIV being at high risk from coronavirus death. I've seen the elderly, diabetics, high blood pressure, high BMI. I've not heard anything about HIV and yet this insurer has making a blanket decision to decline people with HIV based on what seems to be, not evidence, and from what we've mentioned previously, doesn't seem to be a fair and reasonable decision.

 

Andrew Wibberley 

No, I think and I, you know, I, I mean, yeah. I'm entirely sympathetic in agreement with you, Kathryn. So sure, long and short of it, I think. And I, I absolutely, I am very happy if someone reaches out to anyone of us three and shares the study that shows that what I'm saying, Kathryn's suggesting, and Rosalie says is up to her is incorrect, but certainly I haven't seen anything to suggest that there's a clear link. And I think always with this, you have to bear in mind we all read the underwrite out I mean, Kathryn, you spoke through better that I probably could have, the kind of the counts that we look at the, you know, the CDe and things like that.

 

And I absolutely can imagine there are, that there will be a link between people who are really struggling already with, not just HIV, but other conditions. And clearly that's, you know, so I can't believe that. But when you look at the kind of the group of people that insurers are already generally prepared to accept after underwriting. Yeah, I haven't seen any evidence. And as you say that they went to this world of guesswork versus estimates versus reasonable assumptions. Right. And I think that's the challenging bit. For if you're relying on Equality Act, then clearly as an insurer then then it's how at what point does that become a reasonable assumption. And I personally, I would be uncomfortable saying that that's a reasonable assumption based on anything else out there today.

 

Rosalie Hayes 

Yeah, and I say that, you know, for the HIV sector, we're also obviously very interested in understanding what the risk of COVID is to people living with HIV. You know, there's been lots of discussions about this. And we're all trying to really stay on top of the research. And there is some studies going on at moment, looking at COVID patients who also live with HIV, but they're very, very small samples. And, you know, like, groups like 30 people or maybe more. So it's very difficult to draw any conclusions yet.

 

But what I think it would be reliable or reasonable to rely on, and is that the British HIV Association issued guidance for people living with HIV on whether they should shield or not, and the key recommendations were that people living with HIV should be considered to be at high clinical risk of COVID-19, if they have a CD4 count, less than 50 or if they've had an opportunistic illness in the last six months. So often that can be if they've maybe an AIDS defining illness, people with a significant multi morbidity. But otherwise, you know, they're just saying you should observe the rules like anyone else. So observes a distancing standard at home if you can, and that sort of thing. They're they're not, they're not recommending any additional precautions for people who don't meet those criteria. So I would say that that's maybe what insurers should be relying on because it's what the rest of the HIV sector is relying on and advice to people living with HIV.

 

Andrew Wibberley 

Yeah, it's interesting, that shielding piece I saw, I wasn't aware of the details of that. And I guess, I guess I don't have to apologise for that, because I'm not in role at an insurer. But I would hope that people who are in insurance are aware of things like that. I do think that that ought to be a really good estimate or proxy. Again, not just for HIV, but especially for HIV around things like this.

 

I appreciate the shielding guidelines undoubtedly have flaws and undoubtedly have been made in a hurry and everything like that. But but I think is a, if you're starting from a, let's start from there and then work out where to, you know, if there's evidence to disprove that I absolutely agree. And that's a really logical and understandable place to be right. And and that's part of where we can fail

 

Kathryn Knowles 

Getting towards the end of the show, in a sense. So I'm going to give us two more positive case studies. So for people just to hear what can actually happen, and what can be good. So it's not all doom and gloom, and I do say that whilst I've had said that last bit, which is I'll be honest, obvioulsy I've been critical of the insurer, and that is that has sent that, there have been some really, really good steps and it has been before coronavirus. There was a really good momentum of changes happening. I think that about the six months prior to coronavirus came in and lots of insurers started to really, really up their game and be and start to listen to the fact that you know, HIV is a completely different illness that what is was decades ago.

 

First case I'm going to do on life insurance. So just very quickly, it was a female life in her mid 30s. She'd been diagnosed four years prior to speaking to us, her CD4 count was 380. And she has an undetectable viral load. So she, we arranged for her to have the level life insurance. So that means it stays the same, in the sense sum assured the entire time. So 250,000, over 20 years, and that was £18 per month. So I'm using these some of these as an example of just you know, what is potentially available out there. And depending upon obviously there's a few different factors as well.

 

And then the next one is the case stufy for income protection. And I'm incredibly proud to say this was done by my colleague, Krystal Skelton, and she is the first advisor in the UK to arrange an income protection policy for someone living with HIV. So this was for a male in his mid 40s. And he'd been diagnosed for seven years and his CD4 count was near 1000, an undetectable viral load. So he protected £2000  worth of his income every month, so that woule be paid for him, and that was £60 per month for the cover. So there's quite a difference there. So for anybody who's listening to this and isn't familiar with insurance, so income protection is much higher in price than life insurance because you are much, much more likely to, to claim on an income protection policy, than you are life insurance. There was also as well, in regards to this premium, the factor into it that the person is living with HIV. It's very good. It's a really good start.

 

We're not saying it's perfect. And the reason I'm saying that is that there was a minimum three month deferred period on the policy, which means that the person needs to have been ill for three months before they're allowed to claim on the policy, which just kind of it kind of gives that impression that they would assume that maybe the person is more likely to be ill more often for short periods of time than someone who doesn't live with HIV. And, and then there's also a maximum two year claim period. So that means for every time that that person is eligible to make a claim on the policy, they will replace his income for two years at the most. Important thing to point out as well with this policy is like I'm saying some maximum loadings have been put in so before where people may be eligible for this policy, because the maximum that insurers are allowing because of coronavirus, it is becoming harder and harder to get this policy type.

 

So I know I'm a specialist, so it kind of sounds as if I'm always saying you know, come chat to me, but you know if it's someone is in that situation and they're wanting that, it is such a good idea to make sure that you are speaking to a specialist who can really explain the differences between an income protection policy and accident sickness and unemployment policy, because their can be sometimes a bit of confusion as to what they are and what they do. And and just really make sure that you are getting the absolute best option that's available in the current market. Does that sound okay, Rosie, that those kind of options or is this something that glaring out that you think you know what, I'd really want that changing?

 

Rosalie Hayes 

Yeah, I mean, I think you'd like say it's really is pretty groundbreaking. It is now available. I mean income protection was one of the policies that I picked up on in our research three years ago that wasn't available at all to people living with HIV. So, you know, it's, it's really heartening to hear that it is now available. I would just say that insurers do, you just need to keep bearing in mind their obligations under the Equality Act, they're making decisions around who to offer certain policies to it needs to be based on good evidence. And one of the things that we found was that there wasn't very much data around how HIV affects absence from work. But the data that we did have, showed that for people who, you know, are working anyway, that generally like pretty well, and they we didn't find much difference in terms of sickness absence time.

 

So I would just say for insurers to keep revisiting those restrictions. And, you know, also I'm always very encouraging if insurers want to fund research looking at particular issues, and I really think they should, because, you know, if they're going to make decisions, they need to make sure they're based on data and charities, unfortunately, can't just do lots of research for free. But yeah, big shout out to all the specialist brokers who do work really hard to get access to insurance people, particularly yourselves. And I would really encourage if people living with HIV are listening, yeah, I would always say go to a specialist broker if you can, because you just going to get the best kind of deal probably with their support.

 

Kathryn Knowles 

Andrew, I think it's your bit now.

 

Andrew Wibberley 

Yeah. So yeah, I guess I second all that from Rosalie. And I think the the piece there about evidence is really important, and I guess a willingness at some point It's not okay, just to go there's not evidence. I guess there's kind of a bit, which is the uncomfortable truth probably. And I sat there, you know, I sat there as Head of Underwriting at a reinsurer and gone well, there's no evidence so so what what do you do? Well, it's hard to change things if there's no evidence, but...

 

Rosalie Hayes

and I would say, you know, like with COVID, it's, it's, you know, I think it might be more legitimate to say, we're doing certain things because there's not enough evidence. I mean, it's a very recent thing, but HIV has been around for over 30 years, well while longer, and to say, Oh, you know, we just don't have any data. I don't think it's good enough.

 

Andrew Wibberley 

Moving on to, to me, a bit of an outcome for me. So I'm going to be stepping away from the podcast after this episode, and probably a bit of a shock if you've been listening to episodes 9 and 8 and I have really mixed feelings about it, probably entirely encapsulated through the last half hour. I've, I've loved doing it and I think it's been a great experience for me personally, but also we've got some really good conversations going. It's mainly just squeezing five days work into three. So the sort of coparenting, which I hate myself even more, just that just the fact that I almost said that word shows kind of where how, how screwed my mind is at times as we try and juggle replace plates and all that. So, yeah, I just can't, I just can't fit everything in, and I'm having to make hard decisions. And this is one of those I've taken.

 

And I'm really hope that other people kind of step forward in different ways. And I know, Kathryn and I, and Kathryn has kind of really exciting plans and some amazing guests coming up. So I think the plan is that Kathryn will continue this. I'll be one of those eager Thursday morning listeners and kind of wish it all the success that it deserves. I genuinely think the timing of these conversations has never been more critical. And there's so much movement and focus on underwriting decisions at present. I guess there is a bit for me professionally as well, that being brutally honest, the insights I can bring into this have lessened at the moment, because as we've seen so much change, and there's only so many different ways I can say, that's why it's so important to speak to a specialist advisor. Because these things are changing week by week at the moment.

 

And that's kind of you know, there's no hiding the fact that it's exciting from from some ways, but it's also kind of it just needs that that absolute focus. So yeah, I encourage you all to join me and keep listening and I apologise for all the ums and ahs that you've heard over the last few months. I hope the Kathryn will let me come back on every now and again to grill me on more difficult case study today. Yeah, but that's that's that.

 

Kathryn Knowles 

Absolutely. I think that everybody's gonna be sad to see you go but I have to say I'm not going anywhere I'm still going to be rambling on, I'll still be having people on and chatting through things. Rosalie it's been lovely having you on I think especially with this subject, I think we could certainly speak again in probably in the not too distant future, as well about you know, how things are potentially changed or not changed and see how we can go forward.

 

We're going to start closing up with our famous truth or lie feature which everybody absolutely adores. So we're going to do a bit of post lockdown truth or lie. So mine is that my truth is, is it my truth, is it my lie, is that the first thing I'm going to do post lockdown is go for spa.

 

Andrew Wibberley 

My first thing that I'm going to do post lockdown is to go ice-skating.

 

Rosalie Hayes 

I think my first thing probably go to my absolute favourite local pub well not really local anymore, but this Salisbury Hotel on Green Lane, spent many happy hour there.

 

Kathryn Knowles 

Very nice. Nice. Well thank you all for listening and thank you Rosalie for joining us, it's been lovely to speak with you and hear about the views of people living with HIV. I'm going to be back in two weeks with Season 2 of the podcast, Season 2 now that Andrews gone. Yeah, he's all Season 1 go to Season 2 on my own little shed a tear, and focusing more upon people's stories of health insurance claims and how we can support people with more than just money. If you'd like a reminder of the next episode where I'll be chatting with another guest, please do drop me a message on social media or visit the website www.practical-protection.co.uk. Thank you, Rosalie.

 

Rosalie Hayes 

Thank you.

 

Andrew Wibberley 

Thanks Rosalie.

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