← A Shot in the Arm Podcast
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- [00:01]
A
Welcome to A Shot in the Arm podcast. I'm your host, Ben Plumley, and this is the podcast about innovation and equity in global health. Because, let's face it, without equity, what on earth is the point of innovation? Well, we're back to HIV and HIV as a forerunner for other infectious diseases, but also how we manage our relationships between doctors, patients and laboratories and the whole complex system within the healthcare. So how's this for a riddle? Someone described by his or her physician living with HIV, suddenly out of nowhere on highly active antiretroviral therapy gets a higher level of virus in the bloodstream than they previously had. What is this? Is the patient unwell? Is it just a one off? Is it made worse by the more increasingly sensitive viral load tests that monitor something quite different perhaps going on in the body than whether the antiretroviral is combating the virus? Is it a question of the science or how the health professionals communicate the science to their patients? Well, I'm delighted to say that I'm joined by friend of the POD, Professor Ben Labrott, and Professor of Global Medicine at the Keck School of Medicine at the University of Southern California. And of course, he's the medical affairs lead for Roche Molecular Diagnostics. Ben, great to have you back on the pod.
- [01:43]
B
Thank you so much. Always a pleasure.
- [01:45]
A
Now, I've got to ask, did I get the positioning of that question right or right enough to get going?
- [01:52]
B
I think so. It's this question of, you know, what happens when you're undetectable and undetectable and undetectable, and then suddenly you open your MyChart or something like that and see detectable. But it's only 20 copies. What does that mean? How do you react to that? And how should clinicians in labs respond to that?
- [02:12]
A
Yeah, and that's the bulk of this podcast discussion. We are also joined, and I'm really delighted to say this, we are joined by Daniel Griffin, who is the chief of infectious disease at ProHealth. He's a clin instructor of medicine at Columbia University. But perhaps most importantly, he is a fellow podcaster. He's the host of the renowned this Week in Virology. And Dan, I gotta say, I bow to you. Over a thousand, two thousand episodes. It's a real honor to have you on our podcast.
- [02:49]
C
Oh, thank you. Thank you so much. I will have to correct a few of those affiliations. I keep. It keeps changing, right. I can barely keep track of it. So it's now the chief for Infectious id. But no, as you point out, I was the head of ID for Pro Health. I was the senior ID fellow for UnitedHealth Group during the pandemic. I was the head for Optum Tri State, covering millions of patients and thousands of doctors during the pandemic. But I cut my teeth on hiv and my academic position is at Columbia, where when I would agree to come out of my lab doing HIV research, it was to see HIV patients.
- [03:28]
A
And do you still see patients? Is this still a Yes, I do.
- [03:33]
C
Oh my gosh.
- [03:35]
B
Some.
- [03:35]
C
Some of my colleagues think, you know, well, I have this fear of missing out, Ben, you know, if I take a day off, what if an exciting case were to come in the door? So I might often go stretches of 20 days in a row without a day off until my colleagues say, dad, you should spend a little time with that family. I say, oh my gosh, yes, I've
- [03:56]
A
got one of those. Yes. Well, it's really terrific to have you on the show and I know the pair of you have worked closely together over the years and I wonder if you might just sort of set the stage for us, you know, why are you both so interested in this specific laboratory phenomenon, the viral blip? Why is it important or perhaps why is it more important to explain it to the patient than it is as perhaps a clinical finding?
- [04:34]
B
So the reason this sort of came to top of mind for me this year was in my role as Roche's medical affairs kind of global lead for molecular HIV diagnostics. I often get pulled into calls with customers who are having difficulty or having questions about the use of our assays in their lab. And I felt like this calendar year I participated in more support calls for laboratories that were concerned about increasing frequency of blips in their results than I have been in the rest of my five years at Roche justice calendar year, and I'm not really sure why it seems to have spiraled up so much, but the pattern is always the same. The labs. So we've seen an increase in the kind of detectable versus non detectable patients. We're wondering if there's a problem with the instrument. It's almost always related to pre analytics or some other factor in the lab. But once you start looking at the actual levels, when I go, okay, well, detectable at what level? They'll say something like, there are these 10 results, viral load of 32, viral load of 18, viral load of 27. And I kind of look at that and go, well, these are probably a very doubtful clinical significance. We've sort of become victims of our own success by Creating assays that have limits of detection down to a dozen copies. You don't have a lot of wiggle room for the natural variation. You could test the same sample 12 times and it might be 10 once, it might be 12 the next time, it might be 9 the next time, might be 11 the next time. But if your viral low, if your LOD is so low, you can easily fluctuate back and forth across that detectable, undetectable line. And so this got us really thinking about, well, what does undetectable mean? We talked a lot in the HIV world about U equals U, right? Undetectable versus untransmissible. But what does undetectable mean? And this is where the confusion comes in. World Health Organization took the position that under a thousand is essentially functionally untransmissible.
- [06:43]
A
Pharma tends to use socially suppressed, I think was the wonderful UN phrase they
- [06:48]
B
came up with and they were correct. Like under a thousand you'd be very unlikely to transmit this to somebody else. So that was. I was actually in Australia at AIDS when they made that announcement and the cheers interrupted. It hadn't occurred to me really. It should have, but it hadn't until I was there when a huge impact that really had for people living with HIV. But you know, you've got pharma using 50 copies as undetectable in most of their trials, but then you've got clinically defining undetectable as below 200 copies, which is the most clinically relevant cutoff. And then you've got whatever the LoD is of the assay, which in practice is what a lot of clinicians and patients certainly use for undetectable whatever the LoD is of the assay. And now that we have assays down to like, you know, a dozen copies or less, the likelihood that someone who is totally well suppressed at nine copies and whose next test might be 13 copies and is suddenly detectable is really high. So you've got a patient opening their my chart or whatever and then all of a sudden they're expecting to be suppressed. They're expecting to be undetectable, undetectable for months on end and then suddenly detectable. And there's a viral load listed. And it seems that the knowledge, understanding of this, both among patients and especially among non specialist clinicians like the primary care physicians that are increasingly getting involved in both HIV management and PrEP, really are not that, are not that aware of this phenomenon or how to approach it when it occurs.
- [08:17]
A
Well, just before coming to you, Dan, Ben, can you just explain what LOD
- [08:21]
B
is So the limit of detection for an assay, so the lower limit,
- [08:28]
A
the
- [08:28]
B
lowest possible viral load that your assay could reliably detect.
- [08:34]
A
So, Dan, now I've got you. I was heavily involved in the U equals U debates from the community perspective those few years ago, and what an utter transformation. Community led transformation it was. But here was the problem that I think so many people encountered in that people didn't really understand what undetectable meant. Did it mean that I'm functionally cured, that I really, to all intents and purposes, have no hiv, and that the medication, as long as I take it for life, acts, if you like, as a therapeutic vaccine? Or is something else going on? How do you explain it to your patients?
- [09:25]
C
Yeah, so, you know, it's going to be interesting, like different people, different audience members. You know, whether you're a physician, you're primary care, you're the HIV specialist, you're the patient listening to this. I think it's important to understand where this conversation fits in. And Ben and I was, it was a while ago, we started talking. What do we think is a really critical thing to talk about? And this is, this is Ben, this, this whole concept, because there's been several milestones in our understanding and treatment of HIV. And I, I grew up in Greenwich Village, early 1980s. I saw 90% of our neighborhood die in a matter of years. Devastating. You know, initially we didn't even know what it was. There wasn't even a diagnostic test. Then we get a diagnostic test, then they've got all these different potential therapies. It wasn't really until the 1990s, mid-90s, that we finally actually, you know, put together cocktails, Highly active antiretroviral, started to turn the tide. You weren't going to just die. We weren't just slowing that you could potentially actually start living for quite a while, but living but without having sex because you were still, there was still this stigma. And so it was really huge when we got to this point, you know, and we have to be a little, little careful because catchy phrases are catchy phrases that always capture the whole truth. You know, Know, undetectable is untransmittable. Well, that's great and all, but now you, you pharma guys make these sensitive assays and I'm detecting it and, you know, you still use stay in that thing. And what, you know, it's not so catchy to say under a thousand is untransmittable. Under 500 is untransmittable. Right. I mean, they're just not catchy. And because they're not catchy, we, we have created all this confusion and I think that's probably the big thing we need to get across here and we'll talk a little bit about what's going on. But you know, we say viral load and we, we let, we let you guys get away with saying viral load. Ben talking to Ben Labrad here. But it's really not, this is a, this is a pcr. You're picking up nucleic acid. You're not necessarily, I mean, probably 999 of those in every thousand are not functional replication competent infectious viruses. So that actually helps to make sense when you say, oh my gosh, look at this, this, in this microliter, there's, there's 800. 800 what? 800amplified units. Maybe there's one or two replication competent viruses in there. And we know that when you get down to these levels, you're not transmitting. We're going to talk a little bit about why, why is this even happening when you're on highly effective therapy and it seems to be working. The HIV specialist isn't concerned, but I think that's the first thing we just have to really address. The first question is at what level do I have to worry that I'm going to spread to my partner? At what level do I have to worry that I'm a danger to others? And the WHO is just saying it's a thousand. And all the studies we did initially they were at 500. And then we realized, you know, a thousand is fine too. You know, that is the level. So below 1,000 you're not transmittable. It's not a quick, easy, memorable thing. But what happens when you are going along and you have, you know, a level that's less than 40, less than 20? The assay is saying it's undetectable. And now you get a number and we'll, we'll talk a little bit about that. And one of the big problems now, right, is that we as clinicians are not the first ones seeing those results. The patient looks at my chart on a Friday night, right? Friday night, 5:30, they look at my chart, they're kind of waiting to go out. They're done with their busy work week and they see, oh my gosh, I'm now detectable, I have a value of 350. And they panic. And so, yeah, so maybe I'll sort of let you guys jump back in after that.
- [13:22]
A
I mean, a deep breath taken there because the idea of yourself as a patient Finding a sudden rise and you know, 350 is substantively different from 5 or 15. And even if you're up to 700 and the who would still say that you're functionally suppressed. It seems to me that there is a lot of information without the absence of context. And that is what makes making sense of this information if you are a patient, a real challenge. But Ben, how would you respond to what Dan just said?
- [14:11]
B
I really thought about, I tried to put myself in the position of potentially living with HIV and being, you know, undetectable. Let's just say for argument's sake, undetectable as per, you know, my, my chart, you know, for years on end and then all of a sudden opening it and seeing detectable and either 75 copies or the Daniel's Point, 350 copies. Knowing everything that I know now, I'm pretty certain that I would still not be able to avoid a little twinge of anxiety. Yeah, that would probably not be alleviated until I. You had a repeat test a couple weeks later that showed, nope, you're not in treatment failure. There would be a tiny voice in the back of my head going, oh God, this is how it ends, even knowing what I know now. So I can only imagine people who've never even heard the word blip kind of opening it and seeing this and kind of what kind of anxiety and kind of stress that really could engender. I do know one of the big reference labs has a couple years ago started adding reporting language to those results that say something along the lines of if it's detectable. They say detectable below 200 is not necessarily indicative of treatment failure and warrants see a follow up conversation with your clinic, something along those lines. And they said that that actually noticeably and almost immediately decreased the number of calls the lab was getting from physicians who were of course getting calls from patients that it really had settled. So there's definitely a knowledge gap here that needs to be filled. There's an unnecessary amount of stress and anxiety going on here that could be alleviated, I think, if people had access to the right information.
- [15:58]
A
But again, you are using, I don't know, the app on your cell phone or whatever it is to find your viral load. Do you worry that perhaps the technology, both the viral load technology and indeed the communication technology has surpassed our ability to communicate contextualize with patients. And on a Friday night or a Saturday morning, the last thing a local infectious disease doctors is going to want to do is be answering a whole load of calls from the Worried. Well, but is there some way, do you think, in which the technology, the information as you were describing, Ben, put a health warning on it, but some way of being more attuned to the contextualization of this and maybe that comes much, much earlier on in the doctor patient relationship. Dan?
- [17:09]
C
Yeah, I was going to say, I mean Ben points out a thing like we're going to talk about like sort of pre bunking the fear and explaining ahead of time like you know, prepping your patient. Hey, by the way, and not prepping with, you know, your pre exposure prophylaxis. This is after this is you've got hiv, we're monitoring you, but explaining like, listen, we're going to go along and you know, great, non detected. This is great, we're doing fine. No, but sort of letting him know, you know, hey, by the way, there will be times and you're going to get a positive number. It's below a thousand. We're not worried about transmitting to others, you know, below 1,000, particularly below 200. We're not going to worry about it. There might be times we want to repeat it, but this is to be expected. So don't check your viral load on Friday night because we're not going to be able to talk about it. And maybe what we're going to be doing in the next little bit here is talking about why this happens and why it isn't the end of the world. Why this isn't, you know, foreboding, why this isn't necessarily, oh my gosh, if it's 350 today, it'll be 700, 1400, 2800. It does not necessarily signal that.
- [18:22]
A
Well, let's do that. Let's try and demystify, if you like, what the blip is. And I don't know which of you would like to take this first, but you know, I'm starting therapy. Dan, you're saying to me that, you know, we hope to get you to undetectable, you might see some blips. How do you go about telling someone like me that the blips are nothing to worry about or they may not be nothing to worry about? Assuming we regularly retest you.
- [18:53]
C
Yeah, I'll go first because then Ben's going to have to find the more esoteric explanations. Right? But now the first conversation I have is explaining about the process. Right? You got infected. HIV establishes these reservoirs. So it's in your body. Part of this conversation is explaining to the patient why you're going to need to stay on this medicine. This isn't a medicine that's going to wipe HIV out of your body. It's going to be in a lot of your cells. A lot of the cells are going to be your T cells. These are cells that are out there fighting. And so we get you on this highly effective therapy. Your numbers come down, you're doing great, all this inflammation has settled down, your immune system is coming back. You're no longer at risk of these horrible infections you may have heard about. Not just may, because everyone's on social media, I'm sure you've heard about them, but we're going to get those things for you not to worry about, but the hiv, it's still in a lot of these cells. So when those cells are, let's say they're fighting another infection, they get activated. Some of the, some of the nucleic material might spill out. We might pick that up in a blood test. That doesn't mean that your HIV is replicating. It doesn't mean you're a danger to others. But you know, at some, at some point in your life, your, your cells with HIV in them is gonna, are gonna get activated. We're gonna detect that in the blood. You know, so if you check it on, hopefully you're not gonna check it on a Friday night, but you're gonna do it anyway because, you know, sometimes people don't listen to me. Imagine that. And you're going to see this number and then ask yourself, boy, in the last week, have I had like a sore throat, have I had a runny nose, have I fought anything off? Probably can come up with the explanation yourself right there.
- [20:42]
B
That is actually one of the things when we're talking to labs, a bad flu season in an area can increase the frequency of blips that a laboratory is seeing. You know, because as Daniel pointed out, people who are busy fighting off other infections, you know, you can get spillage of the nucleic acids. Do you know what I really liked about what you said though, Daniel? Because I talked to a number of my friends who are living with hiv and I asked them first, first of all, not one of them had actually heard of blips ever. They didn't even know the term. Which is another reason I was like, okay, so there's a real, like, this is a real gap that we have to address here. But, but none of them had had that kind of initial conversation with the doctor. Even the ones who had like a doctor who was apparently taking good care of them, they trusted had a good long term relationship with, they had not had that specific conversation. And as Ben pointed out, this is sort of a technology driven problem. You know, the patient access to stuff electronically instead of getting it directly from the doctor. The results, the, the increasingly low limit of detection of our assays and things. We become victims of our own success technologically. And some of the solutions could be technological, such as the reference lab indicating reporting language. But I really agree that this is a technological problem best solved with an analog solution through the relationship of the doctor and the patient. And your idea of that initial conversation go, hey, every once in a while you might open it up and find that you're detectable. Don't panic. A very small percentage of those are actually treatment failure. Mostly they're just blips that can occur for a variety of reasons. I think that that's brilliant and there are a really wide variety of reasons. A hospital that's collecting the samples could have installed a pneumatic tube transport system that shakes up the samples. Just that can do it. Oh, here's another one. A lab could be using a reagent lot that is performing well within the range of specified performance. And then they could switch to another reagent lot which is still performing well within that range, but within that range because our limits of detection now are so low. You know, you can have two lots of reagents that are both performing just fine, but you test the same sample and once you'll get an lo, you'll get a level of viral load of 9, and once you'll get a viral load of 22, one is detectable, one is not. Is that relevant in any way for the patient's health? Not at all. But you can see how easily how sensitive these systems are to the tiniest little things that can shift the needle. A few copies or a few dozen copies either way, so easily.
- [23:28]
A
There's something that you've both said that intrigues me. So I'm going to ask a stupid question and see how far off I am. But particularly with these very, very low viral loads, seeing, seeing blips, it may not be the virus that is being picked up, but bits of dysfunctional chains or part of the virus. And they flag up in viral load in exactly the same way that a fully competent and armed HIV would. Am I understanding that right? And does. And if so, does that sort of change the nature of the conversation with patients at that, that level of detection?
- [24:11]
C
I think it can. I mean, I do think this is one of those things that a lot of clinicians are not really aware of. Right. I Mean, you know, I joke, we. We let you guys keep saying viral load, right? But, you know, when you did that during COVID times, we kept really sort of saying really positive pcr, you know, positive antigen tests. That just means you, you know, the virus might be. Might be destroyed. You're just picking up skeletons and bones and, you know, and so it's important and it. And it's true. And one of the proof of the pudding is when you say, oh, well, I'm a little worried here. Let's. Let's send this off for sequencing. And you're like, oh, we can't really get sequenced when it's below a thousand. Well, why? Because it's all junk. Like, you actually really probably don't have much of any actual virus in there when you're just picking up, you know, RNA fragments. And so I think that also helps, you know, when you talk to the patients, it's like, yeah, there's a bunch of that HIV RNA and a bunch of junk, you know, and even when we shut down the virus, even when it's not replicating, you know, you still might pick up some of that junk when it gets spilled out.
- [25:16]
B
I mean, you imagine you take a sample of whole blood. You know, you only want to test the plasma. So you put the whole blood in a centrifuge and you spin it and spin it and spin it until all the whole blood products, the red blood cells, the white blood cells, plates, all sink down to the very bottom. Then you test just the plasma. And the reason that's so important is because you will have integrated HIV DNA, proviral DNA like in some of your own cells. And if you end up accidentally measuring that proviral integrated DNA, that will artificially and incorrectly increase your viral load. I'll use the air quotes for viral load, because in this thing. Viral load, right. Yeah. In fact, this is at these very low sensitivities, I should say very high sensitivities. At these very, very low levels, that effect can be so profound that just, you know, once you've spun that down, just the act of carrying the tube across the room might jostle it just enough, you know, for some of the proviral DNA that's spun down to the bottom to get kicked back up into the plasma. And so much so that many labs that sometimes run into this problem find that adding a second centrifugation step right before running it actually substantially improves their results. I mean, this is, you know, this is how sensitive these systems are to these little tiny things at These levels. I have seen a couple of papers or editorial pieces where people had suggested, you know, it might be that we shouldn't even report anything less than 200 copies. Yeah, but most clinicians that I spoke to would prefer, you know, to, you know, still know the level, even if it's below 200 copies. I think I would as well. But that is also an indication of how much of an issue this is, that there are people saying, look, we can detect down to 10 copies, but I don't think we should report any viral load that's less than 200 because of these kinds of challenges can occur.
- [27:20]
A
Well, that would make sense, particularly if, as Daniel said, much of the material you're finding is bones and skeletons of the stuff. Is there research on the horizon, Ben, that will help us clear out some of this garbage, some of this noise so that we are, you know, truly finding the HIV Trojans that could cause damage?
- [27:52]
B
Or.
- [27:52]
A
Or are we. Or are we back to the position of having to explain things much more carefully to our patients?
- [28:01]
B
We actually did an advisory board towards the end of this last year to kind of explore this. It was a really global board. We brought together experts, you know, from every world region. And the consensus was essentially, you don't really need to do anything with your assays. They work very well. They were like, if you find a way to increase the precision at the lower end of your assays, great. But we recognize the laws of physics. You start really running up against the laws of physics in terms of how much improvement beyond the ridiculously sensitive tests we have now, you could really get. They said, really, it's the landscape that needs to alter. The landscape that these tests are being used in needs to alter, to reflect the reality of testing with assays that are actually this sensitive.
- [28:56]
A
I want to come back to the question of the landscape in a minute. But. But, Daniel, could we sort of perhaps talk about clinical management and what you do, why results fluctuate, why one of your patients gets a blip, and you foolishly answer your phone at 9:15 on a Friday night. How does that work? What do you tell them?
- [29:23]
C
Yeah, you say, remember, I have fear of missing out. So my phone is, like, always right here, ready to go, because, oh, my gosh, you know, you guys keep watching that Netflix show because this is much more interesting. And it is. I mean, these. These are great conversations. And I mean, the one side, it's. It's upsetting that the patient has to. To deal with that fear and the unknown and the questions. But these. These are Some of the reasons why a lot of us went into medicine to be there to explain. And so it's not bad that we're having these conversations. Um, ideally, as we talked about, we're having them ahead of time. The patient is prepared for them, but you're going to have them again anyway, because who knows how well they were listening until they got that 3:50. Now they get 350. They're like, yeah, I know you talked about this, but actually, now I'm going to pay attention. Dr. And so now is when you have that conversation and you can, you can go back through what we talked about before, you know, and explaining here. This is what's going on. We talked about this a little before. Maybe this is ringing some bells. And I think that's going to happen in our modern world. We're going to have to realize that patients have access to their results. They have access to those results they're checking before we check them, before we see them. So, you know, this has changed practice. You have to be ready in those conversations with your patients when you order tests to be prepared for them to get those tests. And you've got to prep them for what to do when they get this.
- [30:54]
A
I'm living and breathing that at the moment. It's not directly relevant to this conversation, but I have stage 4 colorectal cancer and I'm having a battery of tests also delivered to me down on an orange iPhone.
- [31:08]
C
And, you know, you can buy the cheap one and get an orange case. Yeah. Anyway, just let you know.
- [31:17]
A
But the thing that was actually sort of fatally funny about it was that my oncologist said, well, yeah, if you do a test and you don't get a result coming in the next, you know, hour or two hours or end of the day. Yeah, we'll probably hold off if there's some stuff in there that's alarming, and we'll meet with you and talk to you and like, oh, my God. So part of my wellness is knowing that I get the result if I don't get a result. Ah, so it's.
- [31:49]
C
Yeah, no. And a lot of our patients have become educated. Right. So we've, we've taught them, and I think it's important to teach them, you know, to this higher level. Taught them that, okay, there's, there's two big numbers that we're going to worry about. We're going to worry about your T cell numbers, and maybe we'll even get sophisticated to talk about percentages as opposed to absolute numbers, because the percentages are more steady, absolute numbers are going to fluctuate. So very sort of similar to what we're talking about here. Like, oh wait, what happened to my T cell count? It went down. But was the percent stable? Right, so you prepped them there and then you talk about the viral load. You say, all right, the viral load, we've now got you down below a thousand. That's great. And it's nice to sort of word it that way. It's non detectable, it's under a thousand. We're talking about under a thousand here. It might bounce around and we talk a little bit about why and they don't listen until it does. And then we have that conversation again. And that's one of the things about HIV care. It tends to be longitudinal. It isn't a, it is a one and done. You're not showing up with a urinary tract infection and then going on to the next urgent care in six months when you have another problem. This is a relationship. And if you keep building that relationship, if you keep being there for the patient, if you keep answering those questions, if you keep preempting so they're ready for whatever results are going to come that way and that's going to build that relationship and then that person is going to be more likely to take their medicines, more likely to do well.
- [33:14]
A
That sort of spidey sense that you both have that where, oh, is this just a blip or is there something else going on? What sets that off in your mind? What perhaps makes you think we may have this test but we should be looking more into it.
- [33:35]
C
Ben, I'll let you jump in.
- [33:36]
B
I guess from my end. Certainly I've talked so far about laboratory and kind of situational factors that can cause this, but there are patient factors. What if they've had pretty bad diarrhea for a few days? They may not have absorbed their HIV meds effectively. So it's sort of an involuntary non adherence issue. Or sometimes people, there are people who forget, you know, take their bills. Now this is where, you know, to Daniel's point, you know, this longitudinal relationship, I'm going to guess that after like five or ten years of managing an HIV patient and having that relationship, you probably have a pretty good sense of what their adherence is like, what their compliance is like, you know, if there are any potential vulnerabilities that that patient may have to a blip or treatment failure occurring compared to some of your other patients. And so I would say that clinical suspicion, but clinical suspicion not necessarily based on Clinical signs and symptoms, clinical suspicion based on your longitudinal knowledge of that patient because of your long term relationship with that patient is I would guess that that's probably going to be the strongest factor to help help you intuit whether this is, I'm 99.9 sure this is just a blip, you know, the next one, or this. I wonder if this could be related to, you know, some kind of adherence or treatment failure issue, whether transient or long term.
- [35:07]
C
Yeah, I mean, there's, there's science here, right? So, you know, you, you ask that question like, hey, how many times in the last week or the last month have you forgotten your meds? You know, that net non judgmental because you're, you know, if you don't actually get, you know, we say the most important, at least reliable is the history. So you want to sort of get that if the person's like, well, you know, I had some issues and I haven't been on my meds for a few weeks. Okay, you could start thinking differently if, you know, as Ben brings up, they've had diarrhea, they've had nausea, they've been sick, they, you know, had a really, they were really knocked down with something, you know, you can get from the history at least some suspicion, you know, is this likely to be, to be a problem or not? You know, and sometimes it even just serves as another sort of reminder when you're asking like, you know, it's really important that you take your medicines because if, if that's the case, then this is, this is probably just a blip. But if you haven't been taking your medicines, if you've been forgetting, then, okay, then maybe this won't be just a blip.
- [36:04]
A
Right.
- [36:06]
B
Where the blip could serve as a wake up call for patients who are maybe struggling a little bit with their adherence.
- [36:11]
C
Yeah, yeah.
- [36:13]
A
What a lovely entry, Ben, into the final section, which is, you know, dealing with the landscape, looking at. Because I'm struck that you're both very committed to this issue and communicating it about it and clarifying it for folks. But it's been around for a few decades, hasn't it, since art really kicked off and it's not very well known. So what do you think the solutions are and the advocacy that's needed to help sort of bring this to the right level of attention, both within patient groups and with the clinical community.
- [36:54]
C
I mean, Ben Labrat and I had this brilliant idea that we could get like a famous podcaster to talk about it. No, I think a lot of it is we just need to get it out in front of there. Just people like, oh yeah, you know, you know, it sounds silly, but no, like, hey, I heard this podcast. We're talking about these viral blips. Apparently this is what's going on. And now they have a sense. I don't think it takes, you know, it's not rocket science and I'm sure rocket science is rocket science, but no, this is just, we've got to communicate better about this stuff because now we have, you know, I mean, unfortunately we have, you know, over a million people in the United states living with HIV. They all need to understand this, you know, 40, 50,000 new cases each year in the U.S. they need to know about it. All the people throughout the world, the millions throughout the world living with HIV and all their caregivers. In the US it's now nurse practitioners, primary care docs, not just HIV specialists. You know, people like Bet and I, we're steeped in this stuff and you know, at this sort of fundamental molecular level. But this needs to be something that if you're managing, interacting with or person yourself with hiv, this is stuff you've got to understand.
- [38:05]
B
I guess, like with my like taking my like clinician hat off and putting my industry hat on, my thought was essentially I, you know, looking at where could we, what's the best way to get this information out? And we really speculated, and you talked to Mitchell Warren about this, you know, to pick his brain. How do you get information out to the two stakeholder groups that really need it, which is the patients and the clinicians treating them. And there's all kinds of, you know, maybe through the social media apps that people use, you can get messaging out that way, you know, maybe this is something that pharma might get involved in as well. Who knows, you know, you know, because after all, like, you know, every time people have a worry that a blip is related to treatment failure, that also, you know, every that's, that indicates a reduced confidence in the treatment itself. So pharma, you would think would have like a real stake in this as well. And so with my industry hat on, really was kind of looking at what can industry do to try and support this, get information out to patients and people living with HIV and their caregivers and family and people in their networks and the clinicians who are caring for them, especially this increasing body of non specialists who are looking after people living with HIV, the nurse practitioners, PAs, NPs and primary care doctors. So doing things like this, a podcast that has listenership that includes HIV specialists and people living with HIV and people who are just interested in the science. You hope that you can get the information directly to people, but just getting it out there means someone is like, oh, God, they're at dinner. I just checked my results and now my viral load is this. But I've been so adherent, you know, maybe someone who's heard this podcast and is at that table goes, you know, I heard something about this and said most of the time that's actually just a blip and you just need to get retested. And they go, oh, really? Okay, I'll go talk to my doctor. Yeah. So I did want to ask if Daniel had had any thoughts, though, on anything else industry can do by way of support. I mean, you can do CMEs, we can put out information, we can publish papers, we can publish editorials, we can do podcasts, but you know, really always open to anything we can do to again to alter this landscape, you know, and make it an easier landscape for people living with HIV to live in.
- [40:21]
C
Yeah, no, I mean, I'm glad you're asking because as we're realizing, the reason we're having this conversation now is this. This has been a phenomenon that's been out there, that's been known about, that's impacted treatment for years, but yet the. The appreciation of it is still pretty low. So whatever we're doing, we haven't done enough. And so, you know, this podcast, though, is going to turn it all around.
- [40:41]
A
You say, oh, yeah, just like that. But look, that was soft. There is one thing that you both didn't raise that I think might be worth putting on the table increasingly. And we see this in the us we see it obviously across Africa, but the role of community health workers. Ben, you know, I'm chair of the San Francisco Community Health center, which provides 80 to 90% of care for San Francisco's trans population and a very, very significant amount of care for the homeless population. In San Francisco's Tenderloin, people's first exposure, even if they're on treatment, is with the community health worker doing the rounds. And I think there is a real utility there. The same is true in LVCT Health, the clinic I was talking in Kenya, so true in Uganda, in China, the role of community health workers has expanded, really. And I think we see them as an unutilized tool. And the other thing I'll do with my other board hat on, which is Viva, chair of Sugar Global, which is what the MTV Staying Alive foundation was now based truly globally and as it does its series of TV shows, one of its characters living with HIV could very easily, over a course of a series of episodes, have to deal with this blip. So a lot of things come to mind. I think it's a fully comprehensive approach that we need to take.
- [42:35]
B
I think I might follow up with you offline about that because I would not mind at all experimenting with some of the community health workers in the Tenderloin. I'd love to see what they already know about this, if anything, and fill in any knowledge gaps that they may have. And see, that would be a really. I'm going to follow up with you about that. That would be a really interesting place to start, I think.
- [43:00]
A
Absolutely. And I find myself absolutely humbled by the fact that I know significantly less than they do. But it is interesting that this is not something that ever comes up. But. Yeah, yeah, yeah. Well, look, we're coming up to the top of the hour and I just wonder, Daniel, Ben, what have we missed? What are the important things we need our listeners to know beyond getting their backsides together and acting on this?
- [43:27]
C
Yeah, no, I mean, I think we've talked a little bit about the catchy, undetectable is untransmittable. And that's not quite the science, which is you get that under a thousand and things are good, and those numbers under a thousand, we're not that worried about them. We can explain why those are happening. The sky's not falling. Let's make sure we have these conversations. I think it's a great thing you bring up with these community healthcare workers, and not only do we need to communicate with our patients, but we need to be there for our colleagues when they have questions. So they also understand because as a growing number of people are helping to take care of folks with hiv, we need to make sure that the knowledge, the expertise is out there, it's accessible, and it's ultimately benefiting our patients.
- [44:15]
B
And I think what I would add is this is a problem that's not going to go away even as we make progress towards HIV elimination. In fact, it might even get bigger because as Daniel pointed out, we've got, you know, 40,000 new diagnoses every year, and most of those people are living now. They're not dying. This is not. Fortunately, this is not the 1980s where we're going to keep you as comfortable as possible for as long as possible over the next few weeks. Right. Like we're not there anymore. Every time I go to a conference in the past couple of years, there's an increasing percentage of the HIV related papers related to things like managing hip replacements in HIV patients, you know, dementia. Like there are problems of old age that are really great problems for us to be focusing on because the HIV has become so second. It's so we're so good now at actually managing HIV that everyone's living long enough, you know, where most people are living long enough to die from, you know, other things. Thank goodness. But that means the body of people living with HIV is going to increase for probably a good few years yet as we keep having new infections. But everyone is living. And so more and more people are going to be cared for and more and more people are going to be getting blips. And so I think there's a real imperative to really push now to try and make this part of the normal, everyday knowledge kind of HIV knowledge package that folks living with HIV and the people who care for them and work with them also have.
- [45:51]
A
Well, Ben, Daniel, thank you so much. That's it for this episode. Thank you to our guests and to the really important conversation of viral blips, which we will be coming back to frequently in our substack in our TikToks and our Insta. Let's see if we can really raise the bar around understanding here for people with hiv. A big thanks to Eric Aspera, our director and producer of A Shot in the ARM Media. And finally, a big thanks to you. Now, you can find us wherever you download your podcasts, but if you care to, we're looking to build up our subscriptions on YouTube so you can see us and hear us in full Technicolor. And all you need to do is to go to a Shot in the Arms channel link on YouTube and you'll find us there. With that in mind, hope you all have a great week and a safe week, everyone.