 Likeable science. We really do likeable science. We like science with Ethan Allen. This is a special show with Ethan Allen about likeable science and I'm the guest host. I'm Jay Fidel and he's the host guest. I get that right? You did, exactly. Today we're going to talk about AIDS, you know, it's a really interesting topic and let me let me give you my own thoughts, you know, back back in the day I guess it was in the 80s. We saw an outbreak of herpes. It scared everybody about about pre-sex and then not too long after I guess it was within 10 or 15 years after herpes broke out the dreaded AIDS came out and it was affecting a lot of people and it was it was it was terrible horrible disease. So many new and painful and really terrible things that happened in AIDS and and there was a lot of social reaction to it and there were a lot of medical research by smart guys and girls who ultimately came up with a bunch of ameliorative type drugs cocktail, cyricol, that could actually slow the AIDS virus down and ultimately give you a life. It couldn't cure the AIDS virus. You can only slow it down and give you a life but you were always you know headed over over your head as a shadow. Now recently a few days ago in the New York Times there is reported the story of the Berlin patient who was miraculously cured and also the London patient who was likewise I think miraculously cured. The first and second patients actually cured of the disease. Yes and now what is remarkable on a local level is that two years ago the University of Hawaii medical school in John A. Burns School of Medicine connection with the Cancer Research Center which is on its grounds there in Kakaako had a program about AIDS, about AIDS research. They had Virginia Presla who was then I think was then was the Director of Health or had just been the Director of Health and Cecilia Shacumau who ran the AIDS research program and a number of the researchers in the program and remarkably the Berlin patient. Oh and Missy Brown he was there and we made an OC16 movie of this and we'll play part of it for you later. So let's catch up on AIDS you know because we haven't we meaning the community we really haven't talked about AIDS so much it was never the kind of thing you shouted from the hilltop. People didn't really want to tell you their AIDS status it was all secret as it should be but but now there's been news Ethan what is the news? Well so fundamentally the news is that at least two patients now and likely a few more in the pipeline may have actually been fully cured of the disease. It was not a simple process to do it and it was fraught with its own complication but and we can go into the mechanisms here in a bit if you want but that's these patients now do not have to take their antiretroviral drugs they do not have any discernible HIV in their blood or any tissues they are basically cured as far as anyone knows yes and there was first the Berlin patient who was cured about two years ago now the London patient has just finished up a year off of drugs with no sign of any sort of recurrence as I say they're following a set of people who have had similar procedures now go into and some more of them are some months into this they're still doing fine. That's really it's marvelous it's a huge breakthrough against a really deadly and unpleasant disease no footnote I once upon a time I had a client who somehow contracted AIDS and was before the retrovirus drugs were available and it was the end of his life he dropped out of what he was doing his wife dropped him his family dropped him he was gone it was the end of his life and we don't have that anymore. The disease came with an awful social stigma truly it was badly it was poorly understood and greatly feared that could be spread other ways in casual ways casual contact would spread and that's of course not true but there was fear that it would in us people who had it were just shunned. They would say that the families would abandon the friends would abandon them making affordable death much worse. Social deaths is what you got family death right anyway so this is really good news but it's not generally available yet right? Right and it's a process that you can't undertake lately but as you probably know so the reason AIDS is sort of so tricky is that it attacks our immune system cells or cells circulating our blood white blood cells that actually are responsible for finding foreign invaders in our bodies and killing them and by disabling our immune system cells we our systems become open to all kinds of other infection so it's not typically the HIV per se that kills you it's pneumonia, composing sarcoma, amydia infections, things that often should be much less they should be sort of I won't say benign but they shouldn't be lethal but you have no immune system and these infections and sweep through your body, ravage your tissues and kill you. These other conditions are in many ways they're specific to an AIDS patient. Well no not necessarily anyone can get pneumonia anyone can get amydia infection that's a thing once your immune system is shot you're sort of this target for almost anything and plus without an immune system to fight it these seemingly minor infections can become just nasty and lethal to you. Yeah awful and they present badly on you. Yeah it's typically right. They sort of they support the notion that you've got some really pernicious thing going on you cannot appear in public you cannot talk to your friend. Yeah yeah this is how this was in the early years of the epidemic one of the worst parts of it was you had to sort of had to hide it fortunately as it's become more realized that basically it's spread through unprotected sex through sharing needles and mothers passing it to their children their womb and those are the basically only three ways to get spread. You alluded to the biochemistry that I guess the molecular biochemistry which is what they talked about at this conference several years ago the medical school and wow it was complicated charts and graphs and I believe by the way that some of the researchers at the Medical School the Cancer Research Center working on AIDS participated in the treatment of the Berlin patient which will show some footage of him later but can you talk about the molecular biology involved? Sure so the treatment actually is a rather radical treatment you have to remember your blood cells are being replaced continually from your bone marrow basically and then once they're born they have a fairly limited lifespan and then they die but you are producing literally millions of blood cells every second of your own marrow. Now second sort of fact certain cells have all of our cells have a lot of different kinds of receptors on them multiple kinds of receptors were only just beginning to get a sense of some of those receptors but it turns out that's like a sensor yes and so it allows other things to bind on to the cell and it turns out that virtually all forms of AIDS and there are several strains of AIDS running around virtually all of them need one particular kind of receptor to bind on to and it turns out there are a certain number of people in the world who have a defective of receptors of that particular brand kind of receptor so what they do with patients who want to get this treatment they essentially kill all of your blood marrow all of your bone marrow they either irradiate it or hit it with toxic chemicals literally leaving you with no bone marrow left and then they give you a bone marrow transplant ideally from a patient who has this defective kind of receptor because then you start producing new blood cells all your cells have this defective receptor AIDS virus can't latch on to it and basically you are then in theory cured that's pretty sophisticated yeah it's you can see it's not a simple thing get rid of all your bone marrow is killing all your bone marrow that's a project and probably very unpleasant right and has this bad side effects yeah yeah and that could hurt you another way I'm sure this is not without bad side you can't get replaced you're gone and you need your bone marrow to create the red cells to keep you alive right absolutely okay and then so once you kill all the marrow how do you replace the marrow well that is everyone has bone marrow and so they actually draw some out of large bones in these healthy donors ideal is to say these healthy donors who happen to carry this genetic mutation or defective receptor and then they basically inject that bone marrow into your bone and though that stuff just starts producing and doing what bone marrow does basically and cranking out new blood cells for you but now there are blood cells that are like that donors blood cells that is they are they are missing this key receptor they have a defective kind of receptor and AIDS virus can't latch on to it it can't detect new cells it can't fill off your immune system your immune system rebounds you become healthy again a transfusion wouldn't be sufficient no this has to be because the bone marrow is where the problem starts and you have to get good bone marrow right to be cured right so they're actually now something like three dozen patients who have undergone this process Berlin patient one of the very first people to do it some of these they have managed to use donors who have these defective receptors others they just because those people are not terribly common they've just used other people's bone marrow and make it reinfected not clear yet but they're able to tell when you have the flawed receptor then you become a potential donor yes I'm sure that but it doesn't sound like there's that many people who qualify now there's apparently a cluster somewhere in northern Europe of people where it's a little more common I suspect there are groups right now working desperately to locate those people identify them cultivate them get them into regular donor programs where they can do a world of good you know I would I would say that medical science researchers in this area must be looking for a way to do this without the need for finding a donor you know and sort of make make a change genetically stem cells what have you and introduce those into your existing marrow without having to flush your marrow now I'm I'm guessing you're quite right I'm guessing that people working on you and I've talked at CRISPR before technology we learn a lot on this show I suspect that people work on how how you can use CRISPR to get in there and start yeah altering your bone marrow cells to generate defective receptors this receptor or so that your blood cells then come out with AIDS virus well considering how complicated you know ages in the way it affects your your cells your body your you know immune system and all that and the way the immune system you know permits these these really awful diseases that take place in your sub diseases you know associated diseases take place in your body this actually sounds pretty elegant and it's sort of brilliantly simple in its own way isn't it oh it is it in its own yes and as you say in its own way I mean you go right to the root of the problem you rip out the bone marrow you replace it with good bone marrow and you're done I mean it sounds simple so I mean it's it's we live in an amazing era that we have medical science that can actually do this I can do it reliably rep repeatedly you know and make make the whole thing work but yes people are looking you there's lots of other ways that people are looking to cure AIDS or to stop the virus because yeah you don't really want to go having to knock out all of your bone marrow cure a disease taking other risks yeah these guys go through hell oh yeah in the process let's take a minute well let's take a minute off first okay and we'll have a break when we come back I want to start playing the footage we took of Timothy Brown who is the Berlin patient who was the patient was cured and when he was here a couple years ago he described his own medical and life experience was very interesting only a couple minutes worth of video about it was profoundly interesting when he was here and the room was filled with people researchers and doctors and what have you hearing him out so we come back we'll listen to him and we'll hear what he had to say and then we could comment on that okay we'll be right back hello ha I'm Warren pair a host here at think tech Hawaii digital media company serving the people of Hawaii we provide a video platform for citizen journalists to raise public awareness in Hawaii we are Hawaii nonprofit that depends on the generosity of its supporters to keep on going we'd be grateful if you go to think tech Hawaii comm make a donation to support us now thanks so much hi I'm Rusty Komori host of beyond the lines on think tech Hawaii my show is based on my book also titled beyond the lines and it's about creating a superior culture of excellence leadership and finding greatness I interview guests who are successful in business sports and life which is sure to inspire you in finding your greatness join me every Monday as we go beyond the lines at 11 a.m. Aloha hey we're back Ethan Allen and me talking about likeable science and a cure reported the New York Times about AIDS and we want to play for you the footage we took of Timothy Brown the Berlin Berlin man who was included in that article in the Times and then we can evaluate and comment on what he's saying about his life experience and his medical experience in terms of the process and the cure take a look at this I was attending school in Berlin in 1985 when I tested positive for I was terrified and thought for sure I was going to die some of my friends had already died of AIDS. The cure was never discussed. I was prescribed only AZT then the proteins enriched drug cocktail was realized the next 11 years were pretty uneventful it wasn't until 19 or until 2006 while living in Berlin that I was diagnosed with acute myeloid leukemia. This was bad news. A young hematologist Dr. Gera Hooter started me on chemotherapy the very next day. I developed pneumonia early on. I had to stop my third round of chemo halfway through when I developed a sepsis infection tubes were placed into my heart. I should have died. I was I was released from the hospital and the and my leukemia appeared to be in remission. Yee-haw. I took a vacation to Italy doctor's orders. Unknown to me Dr. Hooter was realizing or was reading about something called a rare CCR5 receptor gene mutation Delta 32. In 2007 while I was on a trip to the US I soon found out that the leukemia returned. Shit not again. In digital attempts at a different chemotherapy were not successful. I was going to die. However a stem cell transplant became a very viable option. Then Eureka Dr. Hooter had a revolutionary stem cell treatment idea. Why not use a compatible donor who had the CCR5 mutation. Someone who is naturally immune to HIV. Dr. Hooter thought maybe it would not only care my career or cancer but also my HIV. Wow what a story. That's that's a small part of the conference that we filmed. It's a think-tech on OC16 episode 257. It's available on our website and it's available on our YouTube channel. You search for zero AIDS. You can find it or episode 257. So very interesting this is the real McCoy. This guy flew in from where he was to talk at this conference to talk about this cure and you can see he was nervous. He was not a professional speaker or any of that. He was reading his notes. He was shaking while he was discussing it but it was very very interesting from a human or a scale point of view and from a medical point of view everybody was fascinated to see him standing right there. The Berlin patient. What do you think? Well yeah I mean it's amazing because he had been diagnosed with the disease then began getting some one of these serious disease myeloid leukemia which kill you very quickly and easily and managed because of very fortuitous timing apparently. The research on this this CCR5 receptor just advanced that point when they realized this would be a good thing to stick in to pop into the bone marrow instead once we get rid of the bone marrow is find somebody who has that and they were apparently able to find somebody. He actually had as I understand get two or three years after his first transfusion he had a second donation from the same donor to reinforce the how to do it twice. Yeah right and but he has now been several years living without taking the antiretroviral drugs. He has no trace of the virus anywhere that anyone's been able to see they've actually go in and sort of take samples of tissue where the AIDS virus typically sort of hangs out and hides never shown up in his blood tests ever since. Yeah so it appears that he is cured. It's look he was happened to be in a right time right place. Right doctor. Right doctor. Continuum of research just at the right place and he was and he found a doctor or a doctor found him where they could they could make a historic discovery together. So that's Timothy Brown and it's a real story about about medical research. It's a story about Johnny Burns School of Medicine the Cancer Research Center and it's a story now repeated in the New York Times two years later. What took them so long actually? Well I mean now they've done apparently the same procedure about on about three dozen patients. Most of these fairly recently it sort of started amping it up once they saw that this really actually could work. So recently it was announced that the second patient London patient as I referred to him has now been a full year off of antiretroviral drugs with no sign of the virus circulating at all. So that is that's sort of what triggered this article that that is that are sort of their benchmark for a cure. Most patients if they go off the drugs will start having virus show back up in their blood fairly rapidly within a matter of weeks or months certainly. So if you can go a year without they sort of arbitrarily declared that as what they'll call a cure. And they say in this block of 36 patients or other patients who are now entering six months without without showing up off of the antiretroviral. So there's it's likely to become a whole series of patients who are going to be cured. It's still a small number out of the whatever 36 million people have this disease and tens of thousands and I have 36 million. Oh my gosh. That's huge. Yeah. So if you are if you've had your marrow changed and you're still taking the antiretrovirus in order to be safe and you and you stop taking it. Stop taking it. And the virus comes back. I guess you just go back on the antiretrovirus and that will help you as it did before. I would think that would be how you would do it. Right. I don't know the subtleties of treatment. I'm sure there are medical subtleties getting off and getting on. Right. I suspect I don't like you to do that very much. I'd rather keep you suppressed. Keep the virus suppressed and not let it ever come back and try to get a foothold again. So what have we learned here in this I mean we have a lot to learn about how this is actually going to work and as we discussed a little while ago whether they can do this on a synthetic basis instead of having to go get donors and change your blood marrow. That sounds like a real project. But what have we learned about the quality of medical science in the 21st century and its relationship with molecular biology? Well we've learned I mean if you think about it I mean AIDS was not recognized until in 1981 I think first formal recognition there were some patients dying of some strange immune system failure and here we are relatively few years later I mean this is 40 years later and it seemed insoluble for the longest time. Oh yeah it was horrible there were predictions that it was going to wipe out the population of the world or you know decimate the population kill off half the people on earth and with a great deal of time and a great deal of effort and a great deal of money and a huge dedication by just a whole lot of people they have got now these antiretroviral drugs that basically can hold it at bay and they now have a process to cure it that seems like it's working and there there are other people working on further cures that are not quite probably so severe or so extreme. It's remarkable that humanity and the medical science science in general can can deal with this and find a cure in a relatively short time of something that seemed insoluble right it's a likable science yes it's likable at least likable very likable but you know what what it what it shows I mean it's sort of in a in a larger sense is that yes humanity can find solutions we can find solutions to things that you know vika for example we can find a solution to that it'll take a little while we're gonna have to dig deep we're gonna have to train our researchers we had a couple of them right here in that share we're working on this project train our research to deal with with things that appear to be insoluble and and we can do it I'm gonna the other point I would make with you is that we're gonna need to do it because these things can be scourges problems in the world are not going away there are new problems every day and yes we need science it's not a silver bullet but it's a hugely important and vital tool to solving a lot of the world's problems we have to if we want to survive as a species we're gonna have to deal with the possibility of you know pandemic infections and diseases I'm reminded of myrsa I'm reminded of disease rather antibiotic resistant bacteria and most recently also in the New York Times funguses that are popping up all over the world now and there's no known drug to deal with and there was an article recently about some woman in Chicago he died a horrible death and fungus went away to go and so you know point is that we really have to address this we have to fund research medical research in this country for the benefit of humankind absolutely we have to educate our our populace we should be encouraging all students to at least look at the world of science and STEM and and those who like it and also so impelled encourage them support them give them every chance to learn because we need an army of good of good doctors out there to take care of the problems that will beset us and they'll and there'll be more absolutely because they mutate the zika virus all those mosquito-borne other mosquito-borne viruses that are coming around they mutate and what I read recently is they even mutate in a given host while while you are taking a given drug to deal with a given virus the virus is mutating under you the same with bacteria the same with fungus I mean these things are so threatening to humanity in general we cannot afford that's why the whole thing about vaccination is so ridiculous you take the drug you save lives and you save lives of unknown unknown number numerous people that have nothing to do with it and we are yeah that's a whole other issue we have to have another show on that okay yeah well it's always elucidating thank you Ethan you know you make me feel better all the time you make me feel that science is likable and we we better like it that's indeed thanks for having me on Joey hello hi that's indeed