Computer generated transcript

Warning!
The following transcript was generated automatically from the content and has not been checked or corrected manually.

I think we should see people arriving is the first time I'm using Meddle with Claire. You got my sides. No, Emma has m is going to be sharing the screen. Um, and moving this light along for you. Okay, I could start slide sharing now if you want just the titles Light cream. Would you ever Which ever since I think everyone's in the meeting now my right And saying that Amorin Yeah. Yes. And now it says live. We should have a room with us if someone would like to pop it. Yes, in the chat, that would be brilliant. Just for some reassurance, I'll start chatting. Will write for a yes, Thank you very much, everyone, for going to this meeting. So we're very, very lucky. A brief all to half tonight. Speaker Caroline Foster with us today. I'm just going to introduce her and then hundreds her. So Foster is a consultant and adolescent. Infectious diseases are imperial college healthcare and a chest brooks. And she's the clinical lead for transition. Okay. Research interests include the long term outcome adults for with HIV on her research education on guidelines by the boat Contributions include fever jesu hype. Let chips enter Epical 20 units I'll hand over to Dr Folkestone will be around 10 15 minutes. The questions at the end. Thank you. Brilliant. Very much clear. And thank you for inviting me to speak at Stash. Really? This is the journey over the last 30 years, which is basically encompass the whole of my career. I started off life wanting to do pediatric hematology, and at the beginning of the HIV here, a got, um, sort of diverted into looking after babies with HIV and as they have grown up, um, I have now become half the time and adult doctor, so I'm hybrid. Do two HIV. Really? Um, next live, please. So, really, the objectives of this session ought to look at what it's like to be born with HIV and and indeed born into a family with HIV. How you negotiate adolescence plus minus HIV, how you transition with a chronic health care condition from pediatrics toe adult care, looking at the long term outcomes of those born with HIV. So the oldest young person I look after now, um, is 38 so not so young on looking at the next generation. So Those are Children born to moms who have lived their whole lives with HIV. Those Children are probably none not infected, but have some interesting sort of unknown outcomes because it's the generation coming through. Next slide, please. I'm well, this was the tombstones. This was my university experience. And with monkey pox, it's probably some of your university experience now, Um, and obviously we have had cove it in the middle. Next slide, please. On it started in the eighties, um on baby is born. At that time when we had no treatment, 50% off Children born with HIV would die before their second birthday in a low income setting. In the 85% off Children living with HIV are from sub Saharan Africa. Medicines for kids comes along later than medicines for adults. Similarly, medicines for pregnant women come along later. Nobody wants to do studies and Children or in pregnant women. But we got triple therapy from 1997 and it completely changed the outcome. The Children born two women living with HIV and then Selves infected. And indeed, if you look at how successful prevention of mother to child transmission has bean, Um without antiretroviral therapy and not knowing your HIV status and a woman not on treatment. About one in three of her Children would have HIV. And that's a recognition of how fantastic the flu center in the uterus is at protecting babies from all the infections that moms are exposed to. So two out of three of your siblings. If you live with HIV back in the day, you'd have two siblings who wouldn't live with HIV and that's complex for family dynamics to by 2000 and 16 17. We knew the antiretroviral therapy was good. No, only for parts stopping HIV passing from moms to babies. But we had the partner study that showed us undetectable means you untranslatable virus and you can't pass it on. And then the most recent thing of this year is the licensing off, long acting injectable antiretroviral therapy. So that means a bit like contraception. We're increasing the choice that people can have living with HIV, so it's been a really long journey with an amazing amount of advancements. Next slide, please. So this is what we used to see in the early nuts Early ninety's. So that's a baby born with HIV with rapidly progressive HIV and careful opathy on these Children had a very high mortality. And indeed, if they did survive, they often had a PSA picture of cerebral palsy. So hypertonic diplegia on often have a visually impaired because they'd have CMV the retinitis on these little kids presented with failure to thrive. Respiratory just stressed with primary PCP on neurological deficits, usually in the first four months. 4 to 6 at 4 to 6 months of age or thrush lymphadenopathy diarrhea. Next light, please. No. Okay, Next slide, please. Oh, there we go. That's fine. Leave that. That's that's a reference to the fashion of the eighties. Next light, please. Things have moved on. Thank goodness. Um, so this is just a summary slide, really? Of the enormous progress that has been made in the last 30 years, particularly in the prevention of new infections in the use of anti retrovirals to bathe, prevent infections to your partner infections to your baby, um, on the ability to use prep. So pre exposure prophylaxis base in the in terms of or a But now we also have a long acting agent cabotegravir, and that could be used as injectable prep every eight weeks of people who are in high risk setting. So from the beginning of my career, too now, HIV has gone from her disease, where Children 50% died before they were, too, to something that is eminently treatable. And the earlier you start treatment at birth, the better you preserve their neurocognitive outcomes and longer term health outcomes. Next slide, please. So this is what's happened in the UK CO. What? So this is, um, called the chips cohort, which basically almost every child diagnosed in the country under 16 years of age was reported to chips and there was annual perspective reporting off their outcomes on what you can see. Here is when it started in 1996 the majority of the Children were under 10, so 10 is the Green Bowl on. A lot of them were preschoolers. And now you can see by 2020 is that the majority are over 20 on already well embedded in adult care. Next slide, please. And when we look at young adolescents and young adults, outcomes are poorer at all stages of the care cascade, so less a diagnosed lesser retained in care, they have less access to treatment on lower rates of our suppression. And that doesn't matter whether you're in the UK, the US sub Saharan Africa, the Ukraine adolescents do worse on that goes actually not just for HIV, um, but for many healthcare settings. And the 15 to 19 year olds are the only aged group where mortality has been rising in this decade. Everybody else has been falling, and that's driven really by the long term survivors of the perinatal epidemic. Next slide, please. And why is that? Well, deaths in adolescence and young adults from HIV are driven by HIV, whereas in adults it's different, driven by other factors of aging, like lung cancer, liver disease, etcetera. But and you know, if you think treatment for HIV is a simple as one pill once a day, lots of people can't quite understand why a young person can't keep take one pill once a day. But actually, poor adherence in adolescence is an adolescent norm, and this is looking at HBA one c control and you can see so the definition of adolescence is tend to 19 young a belt 20 to 24 in wh show terms and That's really important when we're looking at studies that are disaggregated by age. So this is diabetes. Your HBA one C control goes off from around about 10 when you become an adolescent and certainly your hormone start to kick in on, then improves in your, you know, twenties and down to mid 20. Next slide, please. And actually, this is part of risk taking behavior on lots of people think with chronic disease, they may have failure to thrive. They make it through puberty. Later on, they think you know that sex activity will be later. They went smoke. They won't drink, they run well. They're wrapped and gotten well by cuddly pediatricians. But actually this is looking know HIV. But this is data looking at Children growing up with chronic diseases and unsurprisingly, actually, they take more risk taking behaviors. And poor adherence is one of thumb, Um, and they take multiple risk taking behaviors. And that makes sense to me, because if you have a life limiting condition, your assessment of risk on what you want to get on experience will be different to your peers. Next slide, please. But actually, a lot of adults have a lot of bad behavior. Um, on really in the press, adolescents get a really poor wrap. They get a really poor rapid healthcare. If you think we have geriatrics, we have pediatrics. We have nanotechnology, obstetrics, orthopedics. And yet, really, in most countries, we have very little in the way of adolescent medicine. On if you're a 16 year old admitted with a broken leg, you will be put on a ward with people who are 80 on one of my parents. Patients experienced this on, you know, the elderly woman died next door to her. Um, on that for a 16, 17 year old is incredibly tough. Well, whilst young people next slightly is haven't excuse on, this is why, for their risk taking behavior, unlike the lock on the slide before. So if we're talking about brain maturation, your thalamus, which is your drive for a reward, develops first, okay? And it's out of kilter with your frontal lobe, which is your executive function, which is our learned experience. Our reasoning are planning our emotional regulation, but you sort of need that mismatch because if you don't have that filament drive on an evil ish in the basis Why would you ever leave your mother's heart? Okay, so because you sort of think well, if it's restrict behavior, it should have grown out of the population. But it's a very important evolutionary drive. Next slide, please, and actually executive function and frontal lobe and the sign Aptiva pruning that is enormous during adolescence and young out Life's finishes about 25 and you're in that time. This is about body language, so adolescence recognize a much smaller frame, a number of facial expressions. So when I say when I looked, when I'm worried about somebody who's not taking the medicines, they've got a CD four count 50. They're going to get an opportunistic infection. They can't distinguish. A teenager can't distinguish the same range of faces on dumb. They feel that you're looking angry, so it's really important to actually say I'm really worried. Not that I'm angry on day. Just be aware of the way our body language speaks. You probably got the 1st 30 seconds to engage a teenager and young adult, and they tell by your body language whether you like thumb. So most pediatricians want to look after small Children, primary school and below on. Most adult physicians want to look after adults. Very few people want to look after teenagers, and the NHS makes it very clear to them. Next slide, please. I'm and similarly, you have to be really careful about your language. So if you look at those two statements, how many tablets did did you manage to take in the last three days? That implies you're recognizing that it can be hard annual recognizing success. But actually, most people, when they ask about adherents, ask, How many tablets did you miss in the last week or the last three days? So we need to be really careful how we frame conversations for young people. Next slide, please. This is the head school. Hopefully, you've had some understanding and experience of this. This is a really great framework for history, taking, looking at the adolescent, not as a chronic disease state but looking at the adolescent as a young person and how to manage their healthcare within their much wider and much more important life experiences. Next slide, please. Sorry got fly, which I'm gonna hit. So if you think growing up in the family with HIV, it's it's a bit different. It's different, too. Young people who require HIV in adolescence. So of the young people I look after, 50% have lost one or both parents, and obviously that is going down as people are diagnosed earlier and treatment is more effective. But that means a lot of the young people I look after who are now having their own Children have very little parenting at family experience. They may have been lived with extended family. Some of them have Bean cares for the younger siblings, Um, and about 50% of them were born in sub Saharan Africa. Um, some of them have been young care. It's like if he if you imagine that your mom has the same disease for you, one of the young women I look after, he's now in her late twenties. She can remember when she started cooking for her mom, who had HIV dementia. But she knew it was two steps to get the cookers. That probably puts you at about five or six cooking for your mother, who has the same illnesses you and has dementia or the long term effects of it. The stigma around HIV probably needs, you know, explaining, but But it is absolutely huge that you're a teenager and you cannot share your diagnosis and get support from your friends on That extends into families. So most of the young adults I look after they will have a trivia negative siblings, the majority of whom will not know their status even in their twenty's, even though they share rooms, um, on the issues that are forever escalating off poverty off immigration on, then the complexities off parental guilt, even if you didn't know your HIV status and you transmitted it to your child on the complexities of on infected, similar siblings and those family dynamics and and sometimes that's a positive and sometimes that's a negative. You confined infected Children and infected parents who are having incredibly tight relationship that's not shared with the other siblings and their issues for them. Next slide, please on. Just remember if you're born with HIV, even if you choose to live openly with your status every time you disclose your status. If you disclose that you've been born with it, you disclose that of your parents, your wall of your mother, possibly of your father, possibly have some siblings who have died. So you know, many of my patients who now live quite openly with their status, you know, it would never disclose they they would sort of say, Oh, you know, I caught it sexually or, you know, as one of the young woman said, I'd rather somebody thought I was a slap. Er then knew the status of my mom because she's not living openly with her status on Yeah, I am. So it's It's a complex on that's for each and every relationship where you're deciding to tell and sometimes that sort of burden people can cope with it really well in the teens and twenties, but the sort of burden of every time they want to change relationship, having to wake up. You may know she's not to tell that person, but you still have to make that decision, and that could be pretty exhausting over time. Next slide, please. Um on. Yeah, negotiating all of puberty, your sexuality. Your first at every subsequent you need sexual sexual experience, you know, and a sexually transmittable disease before you yourself have ever had. Sex can be quite complex. Um, for a lot of young people and we do a lot around education. Starting off, you know, talking to kids about puberty on Benicar, carrying on conversations around sexual health from a pretty early age. Next slide, please. So this is just really a summary of some of the factors that you know a young people you were born with HIV are dealing with. About a third have learning difficulties. And that is the HIV is a very near a trip. It's a virus it loves getting in the brain on. About a third have some form of learning difficulty. About 5% will never live independently. Now, if you start treatment at birth of urine infected child, you reduce that risk. Absolutely, enormously. So really rapid diagnosis on starting interrupt you for therapy. It's really important. Next slide, please. On this is just, you know, you saw that chart the picture of the child with the hypertonic diplegia, you know, back in the nineties. And that's infantile age. Being careful opathy that about 10 15% of babies get with rapid disease. But we see a more subtle in the sort of political child you may see speech language delay in the primary school age, behavioral difficulties Then it becomes apparent that they've got learning difficulties. And they may have an IQ of about, you know, 75 which doesn't get you a learning disability supporters. And as a young adult, we'll get you some extra time. It's cool, but probably means you're going to find it difficult to sustain a job. And then we see the burden off mental health. Um, which we'll touch on briefly later. Next slide, please. So this is Katie. Um, she was diagnosed at the age of four with growth failure. She started therapy jewels therapy in 1996 really struggled with it, never suppressed and had a gastrostomy tubes put in. The liquids these kids have to take were absolutely disgusting. We used to detail testing for our trainees, and you can taste it 24 hours later. It's incredibly bitter. Things like liquid boosted protease inhibitors, but actually she did really well with the tube. She was earned 16. She wanted the tube out. She had the tree about. We saw three months later and then didn't see her for six months. She'd miss an appointment and she came back, and actually she had disclosed her 18 year old boyfriend she had had a nerve remiss carriage on did had when she presented had symptoms of pelvic inflammatory disease. And very sadly, during this time her grandmother, who was her main care A. Had died in theater of during the fem pop bypass, had bled out. So you know that's not great for her young person's belief in healthcare. Next slide, please. So she's 16. She's had a miscarriage on. This is the time that we seem to think between 16 and 18, that it's great to move people. Young people with chronic health care conditions toe adult services. Depending where you are. Some people will keep you till your 18 with chronic illness. Some, if you were admitted, have to go to out awards at 16, so transition for a walk on it healthcare should be a planned, purposeful process that addresses the whole person. So their medical psychosocial educational on vacation needs, Um, as they move towards adult care. Next slide, please. And actually, there are lots of ways you can set up transitional care services. There's no perfect model. I think if you have separate Children and adults hospitals, that's often quite difficult because there's a geographical shake shift as well as a department shift, and it's more difficult to do Joint joined up working on day for Children. You have to remember it's often not only the child that's moving. If the parents have been seen in a family based center, they may have to move their care too on for some parents. If you're like us, we see Children and their parents in pediatric outpatients. And when the Children moved to the adult service, the teenagers their parents have to move to go to a sexual health service, which they have avoided. They managed to be seen in a general outpatients and often issues around confidentiality. Stigma about accessing sexual health service could be huge for people. The parent next slide, please. So this is just what we do. We see parents on day young and the Children on when they're sort of they. They have their HIV named around about 9 10 years before that. They know that the virus, it take medicines to keep their immune system. When we build up the knowledge and then we focus on transition, I can keep young people in my pediatric service actually a zone was I like because I work both in pediatrics and in about care so I can move them when they already, Um, which is great, some people traveling a long way for tertiary pediatric, and so it may be that they choose as an adult to go to the Lake Lot service. But if you remember what's happening for a young person around 18, they're also leaving home for the first time, going to university or getting their same job. It's It's a really exciting but quite a turbulent time. Next slide, please. This is how we set up our young adult service is not now now, no longer young adult. It's a long term perinatal adult, um, service. But we have integrated peer support from positive UK. It's really important. Whatever you specialize in to bring in the third sector, they can provide things that you cannot within health, and they add enormously to it on. We have completely joined up working between adult and pediatric services, both in medicine, nursing and psychology. Next slide, please. Um, and there's lots of global literature on how adolescent services should be set up on. Do you know they're right to confidentiality although those of you who training gum you are really good confidentiality, much better and assessment of capacity much better than in pediatrics. You tend to not in HIV, but in other specialties. Still have parents sitting there at 16, asking lots of personal questions to the young person. Next slide, please. What works for in our young adult service? It happens every Wednesday afternoon. You get booked appointment, but you get open access so everybody knows in clinic you can walk in any afternoon any Wednesday afternoon between two and five. You can come even if you haven't been seen for two years. Even if you've had your care, that's, um, elsewhere for the last five years. You can just walk in you don't you do get your normal booked appointment, but what people really value is actually what adults value, which is continue it e of care that is confidential, compassionate and multi disciplinary. So trying to provide a one stop shop where you get your medical, sexual health, contraception, pregnancy care, your mental health, importance of psychology cannot be underestimated. We try and do vaccinations, and the peer support services will also provide support around benefits. Housing and education. Next slide, please. And even though we were told we had to close during the pandemic on DWI were all back. I mean, I was doing that. I see you, but we did a range because it's a walk in service. Was So we said we called close, um, And so we all met back every Wednesday afternoon and we continued to see our patients face to face because our patients had been told they had to come for blood, have to come and collect them medicines. And we were just like, Oh, well, we've all trained to take blood. So actually, we did all left the bottom. He saw them at the same time and provided their care. Actually, for young people, people think, Oh, young people attack e they really like a, um, a consultation. But actually, it's called an expanding wealth of evidence that actually young people don't because they don't normally have a private space in which toe have a consultation. They may not have data in which to do it. If you think about having a conversation about HIV in a shared Jeannie accommodation, you know when you talk to young people, they just go. Oh, I would just told you I was fine. Whatever you asked, you never quite know shoes in the room or what they have, whether they have the ability, um, to find a safe space to talk. Next slide, please. Onda key to transition really is adult and pediatric services having really, really close Bond and liaison to provide joint hair so that a young person Congar with the pediatric nurse, or even appear support worker for those first appointments in adult care? Because it's absolutely terrifying for young people who have spent 16, 17, 18 years seeing the same teams of doctors since they were Children. He also know the whole of their family story to go and have to tell that story to a completely new health team. Next slide, please. But actually, in HIV, adult services do incredibly well, and I think that's a reflection of how gum services have always bean very young person Focus. So, you know, the Purple Bar, and this is for various aspects. This is the Alpha cohorts, and this was looking at this was a couple of U K. Young people. 300 off. Um, you were followed up for several years and did many different studies, as did their uninfected sibling. So it was well matched. But actually, you know, makes people's. Very few people said the adult services were worse and pediatrics next slide, please on lots of people you know, felt that actually, they had more autonomy, that they learned more on that. They liked being treated as a young other one, not as a child. So next slide, please. So if we return to Katie very soon after her miscarriage, she had a P I D. Treated. She got pregnant again. Planned pregnancy should decline contraception. And she had the son who was born a 34 weeks so bit premature but did well. However, being a young mom without a mother or grandmother yourself is really hard. She had really problems in parenting, Um, on DCU not cope on top of that, with the stress of taking her own medicine. So her CD four count was 20 and we put the gastro's to meet back in. But she continued to struggle on DTI you. Years later, we managed to find a district nurse who could see how much she was struggling, and you just elected herself to on her way home from work. Go in, give her her medicine. Give us, um, support with her son in terms of helping to parent how to party, train him how to put him to bed, how to get him things ready and organized for school. And it was an amazing relationship. Um, and she haven't undetectable viral load and CD four went up, but unfortunately, then her partner who worked away at weekends I'm that worked wage in the week of the Gardner, moved jobs. And so she moved house. And so that wonderful community support on the community that I had taken on her under hope their wing failed on. But she moved but couldn't cope again, stop treatment, and then was admitted with PCP in 2012, which she survived. Actually, next slide, please. Um, this is just looks at, like pedestrian. This is a buffalo hump. This is what some of those in there 20 sort of twenties and older. You had the old style Drugs have really quite marked body changes. Next slide, please. On that is, you know, really difficult growing up in in the modern hero where pressure to to look good. It is so enormous, Um, and on that topic and I take pulses on the left, not from the writers we'll talk to medical school on. But that's because most people who cut are right handed. And if you can pull back the sleeve to take the pulse, you can then open to a conversation on diets often easier than asking directly for people on often people who would say no to self harming and say the mood was fine. Well, come with lots of long buggy jumpers. Um, not really want to be examined next slide, please. So in terms of supporting, so about 8% of our cohorts 85% no problems taking the medicines undetectable but sort of 15% struggle on well, you use lots of different ways to try and support adherence in terms of trying to get the smallest number of pills a day the most palatable to look at. Whether long acting injectables is on opportunity for them. We use her head. No cysts are psychologist grand freezes hypnosis because a lot of them have very adverse childhood experiences. So if I get a pot of anti retrovirals, which I do for the students, so I'll get a pot on the table and have a young person on a monitor that shows their heart rate and they're harder. It will be going along at sort of 80. It's stress. I'm gonna come see the doctor, even though they've named with 20 years. But then you'll take out the antiretroviral port and just put it on the table and you can see their heart rate goes up to 130 incredibly rapidly, and they start sweating. And this is, you know, a traumatic response to the early into rituals, which their parents would have, you know, had to force into them. And they tasted disgusting on those childhood experiences. Really stay with you. Um, next line, please. So those of you gain will know that that's fortnight. That is a sort of reference to the fact that the newer drugs are so good in combination. The one pill once a day. They have a really high genetic barrier to resistance, which means that you cannot take doses and you can have a detectable viral load. But your rate of acquiring resistance mutations that's going to impact on your treatment and need to change is incredibly low, so you can get O failing on the same regimen for two or three years. And whilst we work towards improving your adherence and we couldn't do that in the past, because if you have detectable viral me a a tall on some of those old regimens within weeks you would have resistance. So you know it's it's hugely moved into a new era of fantastic medication with really low, so side effect profiles. And that wasn't back in the day. Next slide, please. So this is another young woman. So she's 22. She's got a low CD four count. She struggled for years and years to take medicines. She's got a learning disability. Very sadly, her mom died not taking her medicines. Um, she's a beast. She had a spontaneous venous Sinus from basis, presented with a cracking headache on the only reason we could find for that was the fact that uncontrolled HIV and a B city give you sticky blood. Eso should have a spontaneous clock next slide, please. And she again had started in 1997 with all of the old drugs she had tried liquids. She had had Gastrostomy is but had really struggled. Next slide, please. And you can see So those red dots when the virus is detectable green dots or when it goes world yellow is perfectly acceptable. But what you conceive is we got her access to long acting antiretrovirals. And actually, she also had a baby during this time who is uninfected. And I suspect that the long acting injectables saved that baby. She wasn't planning to get pregnant, but she had declined any contraception. But the long acting injectables gave her her CD four count went from 52 over 400 on her baby was uninfected unfortunately. And this is the same for about one in 40 people on long acting injectables despite turning up for every injection, you get failure. You do get treatment failure. They're not as robust to some of the oral tablets, so they are not for everybody. Next slide, please. This is just looking at the outcomes when adolescents move from pediatric toe adult care on what you conceive. This is looking at the risk of AIDS and death in the UK cohort while European Sheikh cohort on. But what you conceive is up to 10% of young people in five years after moving from pediatric. Two adult care had either an AIDS diagnosis or death, but actually it was how you enter that occur. So it was how you had done in pediatrics that determined your outcome in adult care. So I always turn it back to my pediatric colleagues. And as I'm both pediatrics and adults, I can switch which way and go. We've got to do better in pediatrics because if somebody leaves pediatrics without a suppress viral load, um, and the other thing is the impact of ever having had a needs diagnosis, even at four months of age, still impacts your outcome very significantly in adult care. So that's identifying Children testing and treating the whole population so that we can treat people before the damage is done. Next slide, please on. It's no different in Spain. This is the outcome for Spanish young people in Avoca, Average age of death was 25 6 had had an AIDS diagnosis in pediatrics and only one left with the suppress viral load on half had had mental health. Diagnosis is yet for women had had five Children, so this is a little cobalt, but it actually is remarkably similar to ours. Next slide, please. So this is looking at Arco Port. So the Children you need moved from our pediatric to our adult clinic, which is called the 900 Planets. Um, and despite having good rates of our suppression, we're now to about 85%. What we still see is that they have a 10 times the rate of the UK mortality for their age group driven by malignancy, particularly lymphomas. Also that one in 10 off thumb have had an episode of psychosis on that their hospital admission rate and that exclusive pregnancy is four times that of older adults living with HIV. So they have a huge need. And that's not really very surprising when you consider that if we take adults have acquired HIV on a fully formed body and brain. We know those who are complicated are those you've had HIV for 20 plus years, okay, and similarly, these young people, by the time I get into adult care, and people might think they're very young. But they've had 20 years of HIV, and eventually and triturate drawn exposure, including suboptimal old ones next slide, please. Oh, this is just, you know, the unexpected occurs. This is a young man. He was diagnosed with HIV and hepatitis B and despite being suppressed since the age of 64, bases HIV and hepatitis B. And he was the first child in Europe to get on offer there, which was literally heart. We have an adult tablet and crushed up. He developed a very rapid HCC despite a CD four count of over 700. Very sadly, despite being picked up on screening and respected, as we see with HCC's in young people with her viral hepatitis, which is another interest in mind, they have very rapidly progressive disease. Next slide, please. On this is another very sad young man who his mother had died of HIV. They as a family. They didn't believe in HIV. He was another pediatric center, was actually through the courts, taken away and fostered and given anti retrovirals until he was old enough. 15 Teo make his own decisions, and his decision was to rejoin his family and he held their beliefs. He didn't believe in HIV, and he presented with seizures and had a central nervous system visa lymphoma that is very rapidly progressive and sadly fatal. Uh, next slide, please. Um, so just looking at mental health rates for anxiety. Depression are higher in those living with HIV than the general population, but actually, they're very similar to their siblings. So it's probably the roll off family of the economic, the social environment, off the parental disruption, death, immigration, um, poverty, Um, rather than the HIV say. But obviously your mental health impacts enormously on your physical health, and vice versa. Next slide, please. And when we look for risk factors in the general population, being a migrant, parental unemployment, what we see very highly in in the cohort on on top of our HIV. So if you've ever had a brain injuries in as then your increased risk of psychosis if you've ever had a neonatal infection, which, of course, all young people born with HIV have a neonatal brain infection. Um, so next slightly is it's not really surprising. Um, we see, um, next likely. That's just the rate of psycho sees for us. Just to be aware that antiretrovirals have lots of drug interactions. So this is a young man who, very sadly he was admitted to a local hospital down on the south coast. Um, on the admitting psychiatric team started him on haloperidol, even though he was on a boosted protease inhibitor regimen. And this is the Liverpool drug rep sites on. They didn't check the interaction. So by the time I saw him, he had, you know, really bad tardive dyskinesia. He was really sedated with a huge level off haloperidol. I said, just the importance of always tracking drug interactions, whatever sphere of medicine you're doing next slide, please. Um, Andi, He had had a very challenging him. He was fostered. He was registered blind. His mother had died, but he was actually playing blind football for the region. And he was working towards university and had a very acute onset psychosis. Next life, please on, I got to move on to give you time questions. This is just just really encouraging people that the first episode of psychosis you need to look for organic. You need to look for non organic causes. And indeed, as I say, two psychiatrists if you have a new young person presenting with the psychosis, you need to check their HIV status. I've had a new referral recently of a young woman who was only tested on her second episode of psychosis and actually has perinatal quite a trivia and a very significant learning disability that hadn't been picked up in school. She had Bean, you know, center of people, referring, if a bad behavior. But actually her IQ is 76 but nobody had quite picked up on that. And that's because she's been born with untreated a trophy. And indeed, one in 10 Children born with HIV will live into their teens without presenting. So just because a person is a certain age doesn't mean they couldn't be born with HIV. Next slide, please. And that's just the double stigma off both mental health and HIV. It's a really tough one. Next slide, please. So going back to Katie, she Cat, a new partner, really supported. She's had two more Children with with him. She is now disclosed to her son, who is now 14, and he's aware of her HIV status, and she's getting married to a second partner. Next slide, please. On that is her. She lives openly with her status and works as a peer support worker. Next slide please. And that's what she said to me. You know, she said, My Children having three uninfected Children having had a really torrid time herself was a teenager, and she's She's quite not looking forward to her. Looking after her own Children is teenagers because she remembers what she was like. But that's what she says. My Children are like you. I'm not searching for a cure for me. Um, it's there in my Children being healthy. Next slide, please. Um and that is the London patient who was the second person cured of HIV following a bone marrow transplant for an acute myeloid leukemia with a C C L5 deleted Dona, which proves it can be done. Um, but isn't you know, obviously, bone marrow transplant isn't a way to cure, but I think what a lot of young people need is is hope that there will be changed. Things have improved, you know. They're really looking for better long acting formulations, implantable formulations, but then the potential to not only put their HIV to sleep it to cure it next slightly, so the medicines are really a piece of cake. It's caring for young people. You are living their lives with HIV. It's much more looking at the whole person and with lots of unknowns. You know, they're the first of their generation to survive. So nobody knows what's gonna happen in their forties and fifties and sixties. And that uncertainty can be quite hard for them and and quite hard for the multi disciplinary teams caring for them. There are no certainties. Next slide, please. And when dealing with teenagers, I obviously a door teenagers. But, you know, we were all teenagers once. I suspect most of you are still almost there. But in here it is saying to other healthcare professionals just remember what it was like in a teenager that's so exciting and terrifying at the same time. And particularly in Cove it, you know, they they really struggled and have bean, you know, accused of spreading go over it and being irresponsible. What actually I think makes them did amazingly and look down. But a lot of their education has really, really suffered as as their friendships on being locked up with your parents' age. 16 is not great for many. Next slide, please. So this is just you know, when you're thinking of young people. You can't quite understand why they're not doing what you want to do. And, you know, teenagers meant to be the most rebellious group. But actually they're not. They're the most conformist group in society, but they are choosing to conform to their peer group. They really, really don't want to be different on. Actually, living with HIV means you're different. Too many young people so cope with it absolutely fantastically. But But for many, it can be a real journey on for some. It's waiting, you know? Remember one young person saying, In 120 she realized that the stigma she felt around HIV was no hers. It was that of her mother that her mother's shame and she said that realization was something that really allowed her to move on in her life. Next slide, please. Ah, this is it just, you know, really want to thank you work with wonderful multi disciplinary teams on with the third sector if you do amazing thing, but really three young people who are, you know, absolutely wonderful to work. And it's been an absolute privilege to know some of these young people. I have bean at Imperial for, gosh, a long time. Yeah, 26 years. So some of them I have known from four months of age to 26 so thank you very much. It's been a bit of a run. Three, but any questions? Happy to answer, Thank you. That was a really excellent talk, Very inspiring. I've got loads of questions, but I'll throw open to the to the group watching. Would anyone like to take any questions in the charts as metal is new to me, a luxury whether you can meet yourselves, believe babies just on that point. Yeah, if if anyone would prefer to verbalize their questions, we can give you kind of access to join the Stage two. The say Is that something you can do early, or can you let me know how to do it? Thank you. While people and meeting off the question. Is that sore right there faster? I just wanted to ask a question about how How do you feel it's different? Or is it different? Looking after adolescents who apparently infected versus people who have been infected through sexual activity? Yeah, I mean, I think that's a really good question. I mean, I think there are shared vulnerabilities within the group. I think it's the fact and not so much. Now we're back in the day. It was the fact that the families were so affected by HIV you'd have lost parents. You'd have lost siblings. You would then be living with extended family. You didn't want you because you're living with an arm tea. His mother, his sister, died on. It was that enormous family dynamic on that issue about disclosure that you can't disclose your status without disclosing that family members. So I think there are similarities in that. Lots off the young men we see who require eight Jovi and certainly in sub Saharan Africa, the young women they live with. Many of the shared issues off poverty or stigma be that stigma your sexuality. Um, so, yeah, I think their similarities. But I think there are quite a lot of differences, and it's that family dynamic, um, and that that's what we see impacts on the next generation. You know, you can really see it in there struggling without that family network that's struggling to parent that not really having a parenting model. So I said to say you need. We all model our experiences on life, and you've only ever had one set of parents. Really. You may have had a good set of step parents or aunts and uncles, but it's really hard. And similarly, when we disclose a child and 9 10 year old, we tell them it's HIV. That's their only model of disclosure when they're 20. So you really need to get it right. Really? Calf of the words Don't talk about secret to talk about, you know, private health care information, etcetera. Because and if they find out by overhearing parents or Googling their meds, you know, it's it's a bad way that that really, really important as we take it. Thank you. I got a question from really in the chart says Great talk. Thank you. I was wondering if there's a route to working an adolescent HIV. It hatred be by a gum supposed to three p. Yes, definitely One actually is. You conceive there aren't many kids. So I say to my pediatric trainees, Don't you know you need to know about a driving, particularly you're gonna work in a low income setting, obviously, but actually there isn't any pediatric HIV left in the UK or or very little. So don't do a career in that. However, there's a lots of the gum. Trainees come and spend time clinic and come and do projects in clinic. And there are lots of big young people's HIV clinics, you know, from leads from Manchester gloves goes and George's you new guys and comedies, I mean kings. So yes, I mean, if you're working in the center, you know there is the opportunity. And if you are working in a small center where there isn't, you have the ability to try and change practiced, try and look at, you know, say I'd like to do an audit off all the under 25 in our living with HIV from both routes in our service on have a look at them or a suppression look at the lost to follow up weights. And look at how you can change practice for that group. Um, yeah, so I think wherever you're working in gum, go and do your order. Your service improvement. You know, one set of data you could do based on all that you could do service improvement. You can change pathways and outcomes. So, yeah, lots of ways. Thank you on Jason asks of medical doctors. How could we help with the stigma in adolescents and your people living with HIV? I mean, I think that's that's a really good question. It's It's a societal question that, you know, everybody knew about the tombstones. So few people know about you equals you. You know, good news, doesn't write newspapers. Neighbor is interested. I mean, people are bit more interested in viruses with cove it. And actually, you know, some of my the people I work with that sort of said, Well, because there's been so much conversation about viruses and vaccination and spike proteins and stuff is actually allowed me to talk to my child or to talk to my friends morbid viruses and get more understanding. So that is a good thing. Um, yeah. I think you know, educating the general public about you equals you and how far HIV has come, which, you know, the media are addressing. You know, TV. Like it's a sin as really you know, those sort of things really make a difference. Um, brilliant. Thank you. On before. Another question from L e. Who says Is there a right age to tell a child that in with the tree be about the diagnosis and how was it decided when they're ready? But with this typically come from Caro's or healthcare professionals. Great questions. Different settings use different ways of telling Children so in a low income setting. Often they do. Group disclosures group education group disclosures. So in, in lots of part sub Saharan Africa, I tend to advise parents that this is a medical condition. If their child had cancer, I wouldn't expect a parent to tell the matter at home. It's a medical diagnosis and it's told you by a doctor, lots of you know, some parents think they want to tell at home and often put it off and put it off and put it off and never manage it. Um, actually, I think it's really hard for a parent to give that sort of information. The parents are in the room supporting the child, often the parents incredibly emotional and absolutely terrified. Um, but personally, I think it's a medical diagnosis. Very few of our families have done it at home if they really wish to, of course, with supporting to do it wherever they want to. Um, the age is really important. Um, lots of parents would like to put it off until they're teenagers. The problem with telling somebody who's 14 that they have HIV and we've had 12 parents that we really struggled and not got got in there. And it is a car crash because 14 HIV is about sex at nine or 10, it's a virus. I've lived with them. It's asleep because I've taken my pills. 14 is you have lied to me as parents and healthcare professionals. I never want to see you again and I don't trust you and I hate you. You know, it's visceral 14. And you know, I have a 27 year old who was told at 14, and she's never forgiven everybody for lying to her in, and she's still really, really angry. 13 years later about, you know, she couldn't tell me when that would be a right time, but it was certainly was no. Then, um so it's really tough, and it's really tough for parents, and it's very hard, you know? Well, now tell people when they have a newborn baby, you know, in the year one or two years after, Well, the baby's still tiny. What the road map is for the next years that you start learning about five or six. Why your weight while you have a BP on, Then you learn from cartoons about red cells and white cells, and then you learn about viruses, and then you learn that medicine's put viruses to sleep, and then you learn about human immunodeficiency virus Cool HIV Onda. We draw on a piece of paper, a circle of trust, a circle of knowledge on put names inside that. So who knows enough about HIV that they're worth talking to? On that you talk to people in the circle of trust because lots of other people don't make school teachers and people up there. School don't know really enough about these things, but you can talk to Mom, Dad, the nurse Claire or whatever that sort of thing on that it's not a secret, but that healthcare is private. We have private things about our bodies that we just talked certain people about. So, but so the age about Unless I've got learning difficulties about before they go off the secondary school thank you. Thank you for explaining. Well, with that, I think that's all the questions that we have in the chart. I just want to ask another question, if that's okay, you mentioned that you have a cohort where you follow up Children living with HIV adolescents, living with HIV and the negative siblings. Is there any work looking up recently with a P. H. I V and I remember eating in the guidelines about Children have exposed to HIV perinatal he but not infected. Do you do any work around that? So I mean a good question, and there's a lot of global work looking at the outcomes. There was a UK charts study that work for a bit but then never got funded. So there is some looking at linkage to long term outcome. So mortality on D cancer registries. But there's really very little It's very hard, and but the data from sub Saharan Africa is very much that these Children do. You have slightly worse outcomes than Children who aren't born. Two mothers who lived with HIV on it may be that they're a little bit smaller. They have a slightly higher mortality. They get a little bit more in terms of infection. That may be a little bit of neurocognitive, but of course you're not. You know they've been exposed to Mom's. You have HIV who have anti retrovirals, but also many of those mothers, uh, living in poverty. They are more unwell, their own nutritional status that more likely to have a premature birth. So it's a really complicated lot of confounder XYZ toe. How much is a trophy? But whatever you say compared to being born with HIV, that small risk. If you've negated that and that's what I always say to Mom's, you know you're doing the best you can, Um, by taking your medicines and not having an infected child. Because, yes, they didn't quite do is, well, a zippy as. But I suspect it's many complicated factors, not necessarily a Jovi itself. You must be very hard to pick. A couple of a part of it is confirmed that there are something like I can't remember how many million 15 million in the millions and millions of Children exposed, unaffected inference, the number of staggering. I think you got time. One more very, very quick question from the chart. So really again is asking what proportion of your patients are involved in services organizations? G. T v. I didn't have better outcomes. Probably cheaper is more of a guideline kind of organization. Is that correct? Lunch, even here, correct in the ocean was started out as guidelines, but it's become a charity in its own right, and actually having Bean very much a professionals organization over the last 15 years, it's basically become, and they have their own youth workers on do you know, do a lot with in clinic, so it's really changed. I mean, it is a fantastic organization. Um, it's a really complicated question, really, Because about I suppose, about half my patients choose to get involved with Cheever and to go to the summer camp. Onda are very involved in involved for many years, and another good half of my patients will never talk about their HIV to another young person. They'll talk to a psychologist, healthcare professionals. They may disclose toe close partners, but they don't want to joined passable, and they don't want to sit in the group, um, or go in camp. And it's really difficult because a lot of those patients you've never. Bean don't feel they need Pierce a port, have undetectable viral loads on do really well and a lot of the young people in Cheever, And that's maybe because they're struggling. They are more motivated to go. But there's quite a lot of the cheap, cheaper. Say you've committee here. You are really struggling with adherence on multiple, and it's really complicated because it's chicken and egg, you know, There there is on. In the early days, there was some young people sort of validating. They're own not taking medicines by Johnny Agree pools. They didn't take medicines, and therefore it's okay because you're doing the same with your friends. So they're really good things, and majority of it is incredibly positive. But I think you know people, you know, sort of supporting. And people got wise to that that some of that was going on in the early days. But, you know, I think I think it is absolutely. It's an absolute lifeline for young people to be able to go to peaceful, and you always wonder those who really refuse, whether they're just sort of keeping a little in the books. But then lots of us operate life by keeping the little in the box and never take the, you know, never opened Pandora's Box. And that suits some people. So it has to be a really individual, um, decision for young people. And there are some times times in their lives. It may be that when they're 24 in their first alternate term relationship and disclose, then they will go and talk to one of our passport workers in clinic about a very, you know, tangible. You know, you sort of say, Look, there are young people who have really done it. You can talk to me, but, you know, go and talk to someone who has literally walk the walk. Um, and then they will access it. But for some, it's not until their mid twenties, Thank you very much, that bean really brilliant talk on a really informative Q and A. A swell Thank you, everyone for submitting your questions. We're running a little bit behind, so off let you go. You know what, folks? That I was again really, really great. I think all the 10 days you'll be given a link for feedback, I believe only one that's most Minister if everybody is interested, it wants to get more involved. My e mails on the front of the slides you can email, and if anybody any of you end up with Imperial, come and knock on the door. Thanks very much. Okay, by everyone. Have a good evening.