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Transcript_English: Supporting Community & Ourselves: The U.S. HIV Community in the Time of COVID, Long COVID & MPV
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Supporting Community & Ourselves: The U.S. HIV Community in the Time of COVID, Long COVID & MPV

Transcript* of webinar by Strategies for High Impact and our program Long COVID Justice, September 15, 2022

Visit our website for videos, slides, and Spanish resources.

⏩  JUMP TO: Risk Reduction for Meetings and Events

⏩  JUMP TO: Managing Illness at Home

JD DAVIDS:

My name is JD Davids, and I'm the co-founder of Strategies for High Impact, which manages the Network for Long Covid Justice. And we, this is our second webinar, and we are also live tweeting tonight. Thank you to Alecia Smith for being our live tweeter, and you can find us at @LongCovidNATL, at “Long Covid National”, and join in the conversation there. So that’s “@LongCovidNATL”on Twitter.

We're going to start with the opening grounding which I really need right now. So today we're going – everyone went through something to be here tonight, and we value everyone's presence here today. And sometimes with all that we're doing, and all that comes across our lives, it can be easy to forget to have compassion for ourselves with all the difficulties and complications that can come, so we want to give everybody a moment.

So you can have your eyes open or closed, you can be sitting or standing, laying down, however you are, cameras on or off– and that goes for this whole call, of course. Take a moment to envision yourself as you are arriving here today – understanding with the tenderness we feel for a child we may care for, for an elder or loved one, for a partner, where we understand and feel so deeply the weight or the complexities of what they may be going through – to feel that for ourselves. And the topics we're talking about tonight are complex, and the times we’re in are very complex.

So we want to take a moment to witness ourselves, whether you do that visually, whether you do that as a feeling in your body, whether you do that through sound or movement; to witness yourself as you arrive here today, or as you watch this video on the replay. We welcome everyone here, and we welcome ourselves. And we welcome ourselves with the loving support and compassion that we may have for our loved ones. We want to ground in that for ourselves tonight.

And as we do so, we also want to take a moment to recognize those who cannot be with us tonight, those who have not survived pandemics, those who are not able to be on screens or to take in digital information, and those who don't have the freedom of access to information, or ability to be in attendance online or in person because they are in prison, because they are not given the body autonomy for movement because they're separated by borders. And we are here for everyone today; recognizing that we're here to share information and support to fight for the world that we all need.

So thank you for that moment and we're going to proceed with our agenda. And I'm going to turn it over to – oh I'm sorry, I forgot to give a visual description of myself. I am JD, I'm a white skinned person, a white person with dark hair. It's a bit receding. I'm wearing a white shirt that has some vertical stripes in different colors, and you can see the ears of my cat on the bottom of the screen who has just joined. And then the back, the background that keeps obscuring part of my body, the

zoom digital background, is the names and logos of Strategies for High Impact and Long COVID Justice. Thank you, so I'll turn it over to Gabriel.

GABRIEL SAN EMETERIO:

Hello. I am Gabriel San Emeterio. I am one of the co-founders of Strategies for High Impact and its Long COVID Justice initiative. I am Mexican, light-skinned. I have long hair and I'm wearing a black shirt and I'm really happy to be here. Thank you for your patience. I have to, I want to remind everyone who is presenting to speak clearly, both for the captions and for the interpreters, our wonderful ASL interpreters. We want to thank Desiree and Sade for being here.

And yes, so I have to share my screen. Can everyone see that? Did it make people go away? Can someone tell me what they can, because this is the presentation.

Can someone tell me what they see?

AUDIENCE/PARTICIPANTS:

“We can see it. We can see it, Gabriel.”

GABRIEL SAN EMETERIO:

Great, well, welcome to “Updates and Support on Long Covid and MPV for the HIV Community.”


This is how you can connect with us. I think JD already told you, and then we're gonna send you this information in a follow-up email; that’s our social media.

That's how you could access interpretation which is not available unfortunately; that was closed captioning.

We want to thank our sponsors, our co-sponsoring organizations. ACT UP New York and Philadelphia, Funders Concerned About AIDS, Health HIV, the National Coalition for LGBTQ Health, and Sister Love.

Ok and I think you need to introduce Dr. Michael Peluso who's going to do our next presentation.

JD DAVIDS:

Thank you. Okay well we're really pleased to be here with Dr Michael Peluso who is presenting with us for the second time on one of our webinars, as an expert bridging HIV, COVID, and Long COVID. He is the assistant professor of medicine in the division of HIV infectious diseases and global medicine at UCSF. He's also an infectious disease physician and HIV primary care provider at San Francisco General Hospital for the last five years. His primary areas of focus have been on chronic sequelae of HIV infections and efforts towards an HIV cure. When the COVID 19 pandemic began, he implemented the UCSF Long-Term Impact Of Infection With Novel Coronavirus study, which is the LIINC study, one of the first COVID recovery studies in the country. It investigates the clinical and immunological consequences of COVID including Long COVID. He's also co-investigator on a national study of COVID recovery in people with HIV funded by amFAR. Dr Peluso also serves as co-investigator in the newly launched NIH Recovery Consortium, for which UCSF is one of the institutions enrolling nationally.

Thank you Dr Peluso, we appreciate you being here. Also as someone who is on call and on service this week and a parent of a baby; we really value your time and appreciate your work.

[muffled voices, someone says “Yes okay great”].


DR. MICHAEL PELUSO:

Hey everybody. Really happy to be here. I'm Michael, I'm a light-skinned person, short dark hair. I'm in my office at San Francisco General Hospital. Occasionally my Wi-Fi cuts out so if that does happen I will rejoin in 30 seconds I promise. I think that you were all seeing the correct screen so I will proceed.

So like JD mentioned I'm gonna spend most of the time that I have tonight talking in my first presentation about Long COVID, and then I have sort of a brief overview of where things are at with what is now known in California as “MPOX” kind of officially. And I’m happy to take questions at the end. I am a New Yorker, so sometimes I talk too fast, so if I'm doing that please slow me down.

So I'll begin by talking about where things are at, in September 2022, with Long COVID; and in particular, some recent results on Long COVID in people living with HIV. As JD mentioned, I've been involved in post-COVID work, both clinical work and research work, for two and a half years now– it’s crazy to think how much time has passed– and most of this has been in a program called LIINC, which follows people after they have COVID, and we've been, you know, following some volunteers in our research program for over two years now. And then more recently I've been involved with the large NIH program called RECOVER, which you may have talked about, which has many of the same goals as our local program which is understanding the long-term post-infectious consequences of COVID.

So as you all surely know, everybody on the planet has been affected in some way by COVID, either through getting the infection themselves or knowing somebody who has. And fortunately most people who get COVID fully recover after their infection; but not all do, and some have prolonged issues. This is referred to as Long COVID. Some people with Long COVID refer to themselves as long haulers, but not everybody. And what this really means is the physical and/or mental health symptoms that don't go away in people who've had COVID. This can happen in anybody. It can happen in young people, old people, hospitalized people, people who are at home; and it can even happen in people who were vaccinated to protect against COVID, or people who received COVID treatment. There are a lot of technical names for the condition. The NIH refers to the condition as post-acute sequelae of COVID, or PASC. The CDC now refers to the condition as post-COVID condition, which is an interesting choice. Most people experiencing these issues refer to it as Long COVID.

So I started seeing people experiencing Long COVID way back in May of 2020, before it even had a name. These are some people from our research program, or who I care for clinically, who I have gotten to know quite well over the years, and I think demonstrates what people are dealing with. So I'll just briefly review some of these stories.

A 43-year-old computer engineer whose primary manifestation of both acute COVID and Long COVID has been dysautonomia, or sort of wild swings in her blood pressure and heart rate that causes her to fall really frequently. A 65-year-old nurse who's a person living with HIV, who got COVID and experienced really severe brain fog. He was afraid to return to work because he was so worried about making a medical error. A 33-year-old reporter who'd previously won a bunch of awards for her writing, who ended up actually losing her job because she was no longer able to meet deadlines due to difficulties with concentration and ability to write. A 40-year-old transgender man who was on stable testosterone therapy for a decade before he had COVID, and then subsequently developed really debilitating post-COVID headaches that resulted in his provider having to wean his hormone therapy. That's obviously quite problematic. A 35-year-old marathon runner who now is unable to walk or run a couple of blocks. And these were all people who were considered to have mild COVID, you know according to the clinical definition. I think all of them would say that this has really had a severe impact over the long term on their lives.

So I think the important thing to understand is that now Long COVID is really well described. We know what it looks like in all sorts of people, how it can differ between people, and that it has a big impact on people. And even a year ago there was a lot of, there was a lot less, there was a lot more controversy around this. I think that fortunately over time this has become a more clinically recognized condition. This slide lists some of the symptoms that some people might experience. These include neurologic symptoms like headaches or trouble concentrating; cardiopulmonary symptoms like heart palpitations, chest pain issues, and blood pressure, like I mentioned. Gastrointestinal symptoms like nausea, diarrhea, changes in weight. But there are all sorts of symptoms, and the important thing to know is that the symptoms differ between people, they can differ over time within a person and kind of come and go, and they can have an impact on quality of life; and in some people that might be a mild impact and in some people it can be quite severe. I think this is best summarized by a researcher in St Louis, who basically said that “if you've seen one case of Long COVID, you've seen one case of Long COVID.” It really, everybody has their own story.

So I'm going to talk a little bit about where we're at in terms of understanding why this might happen, and then what the efforts are to figure out how to potentially treat this, with the caveat that there are still more unknowns than there are knowns at this point. So this slide is from a paper I wrote a few months ago, sort of summarizing our opinions about this, but you know an individual who survives the acute phase of COVID can either go on to fully recover or they can experience post-COVID issues like Long COVID. There are a number of of demographic or clinical characteristics that we know may make somebody more likely to experience Long COVID. This includes female sex, middle age, so not necessarily the extremes of age, not very very young or very very elderly people, but kind of the bulk of people. People with pre-existing medical conditions, particularly diabetes and obesity. There was a lot of talk at the beginning of the pandemic by people who were skeptical of Long COVID who would say, “oh well this really just affects people who are really well off and kind of have the opportunity to feel unwell”. That is not borne out at all in my experience or in the data; and unfortunately I think that there are multiple studies now in the U.S and internationally suggesting that people with lower socioeconomic status, fewer resources, and less access to health might be disproportionately affected by Long COVID.

And then I'll show you some data that is concerning to me about HIV as a risk factor for Long COVID. So those are all clinical characteristics, but that doesn't explain why this actually happens in people, so I'm just going to spend a few minutes and talk through where we're at in terms of understanding what is the biology that might be driving this, and if people have questions about more details of any of these things, I have some extra slides that we can talk about in the Q&A.

But I've listed here sort of the main areas of Investigation right now. So at the beginning of the pandemic, you know, as an HIV clinician and researcher people, would ask me, “What is the difference between HIV and SARS-CoV-2?” And I would say to them that the difference is that HIV persists in a person's body after they get the infection, but SARS-CoV-2 comes and goes. And that was what we thought two years ago, but there is a growing body of evidence now that suggests that at least pieces of the the COVID virus may stick around in the bodies of people who've had the infection. And I think that this evidence is becoming really hard to ignore. It's still not a slam dunk certain thing, but this is a major area of investigation now. So there are multiple studies by our group and other groups suggesting that you can measure persistent pieces of the virus in the blood or in the tissues for months after a person has had the initial infection, and so that is thought to potentially be a contributor to Long COVID.

There's also a lot of interest in inflammation in a person's body, either systemic inflammation, you know, inflammation in the blood in the total body, or localized inflammation in specific tissues like the heart or the brain or the lungs or the GI tract. There are multiple studies now that have shown higher levels of inflammation in people experiencing Long COVID. These are not through the roof levels that you would necessarily measure on a test if you went to your doctor, but you can kind of distinguish people with and without Long COVID based on, based on these levels. And so a major area of focus now is what is actually driving that inflammation. Is it the potentially persistent virus that I just talked about, and are there anti-inflammatory treatments that we might be able to use to get people feeling better?

The third area that's being investigated is the reactivation of other viruses. And so there are lots of other viruses that we all kind of get over the course of our lifetimes; the most notorious one is the Epstein-Barr virus, EBV, which is the virus that causes mono. Basically like 95% of adults get that virus at some point in their lives by the time they reach adulthood, even if they've never had like the syndrome of mono. And so there's some evidence from our study and from other studies suggesting that early when somebody has COVID, the mono virus may reactivate; and there's a question about whether that is driving some of these symptoms.

Fourth is the changes that happen in our bodies after we have COVID, related to all of the other organisms that are sort of a part of us. So like a huge proportion of our total body mass is actually made up by all these other bacteria and other viruses that kind of are just there and have roles that we don't really understand. Some groups think that changes in the microbiome, all those good bacteria that live in our body might contribute to Long COVID symptoms.

The fifth area is clotting issues. There's a lot of attention on this recently. We know that acute COVID causes lots of clotting issues in people who are sick in the first few weeks, including unfortunately some people who get really bad blood clots. There's a group in South Africa that really thinks that issues relating to blood clotting on sort of a microscopic level could be contributing to Long COVID symptoms, and so that's being investigated.

And then the last point here is every immune response that we have to an infection involves the good productive immune response that's doing what it's supposed to do, and all of the other immune chaos that happens sometimes, which can be misdirected against ourselves. And so some people think that an imbalance between a productive immune response and a non-productive immune response, including autoimmune responses, immune responses against our own bodies, can be causing Long COVID symptoms.

So these are the main areas of Investigation right now that people are trying to figure out. I'm not going to go into a ton of detail but this slide is basically to demonstrate that for each of these potential causes of Long COVID, there are now efforts to mobilize clinical trials to see if intervening on these potential causes can affect how people feel, and so my hope–although I've been saying this for 18 months–is that these studies will launch and enroll and actually lead to some real answers on how to get people feeling better, and really understanding which of the mechanisms I just discussed are actually driving the disease.

So I'm now going to transition in the last couple of minutes, talk about HIV and Long COVID and some things that I think are concerning. The first thing I think is concerning is that there's actually very little known about HIV in Long COVID, and there are very few studies on this topic, which is kind of surprising to me. The first signal about issues with HIV and Long COVID came from this paper that was published about a year ago and actually had nothing to do with HIV. It was an analysis of people who showed up at the emergency room in New York at Cornell early in the pandemic, and just what happened to them a year later. And what they, these were people who didn't get admitted to the hospital but showed up to the emergency room. And what they found was that the small number of people with HIV in that study were more likely to have Long COVID at one year than everybody else in the study; so they were about 75% more likely to have Long COVID. So that's an interesting but small sample, not really focused on HIV. We recently completed a study in our cohort in San Francisco where we looked at 40 people in our study with HIV and we matched them to 40 people who were similar age, sex, gender, whether they were hospitalized during acute COVID, to see whether the people with HIV looked different in terms of their immune response or in terms of Long COVID. And what we actually found was that people with HIV were four times as likely to report Long COVID at four months compared to people who were HIV negative. So that was very surprising to me. We have a lot of people with Long COVID in our study and it's, you know, I think it's quite concerning. It's not, again you know this is not the definitive study to answer this question, but I think it suggests that, like at least for me as an HIV provider, I need to be really mindful of this in my patients who've had COVID, which frankly at this point is the majority of my patients at some point had COVID.

We recently did another analysis in our study kind of a year later looking at the relationship between different factors and specific types of Long COVID symptoms, and it seems like a lot of the increased reporting of Long COVID in in our participants who are living with HIV and have had COVID are really driven by fatigue and in particular neurocognitive symptoms after they've had COVID. And so being HIV positive was a strong predictor in, in our study of reporting post-COVID neurocognitive symptoms that did not exist before people had COVID. And so that's also quite concerning to me and we're trying to figure that out.

So why might a person with HIV be at higher risk for developing Long COVID? I mean these are some thoughts. I don't have any answers. We know that in all comers with COVID people who are living with HIV tend to be at least slightly sicker during the acute infection, and we know that the severity of the initial infection can drive Long COVID, so maybe it has to do with that. I personally don't think that that's the explanation, but some people might say that. We know that people living with HIV are more likely to have other medical problems, and we know that medical comorbidities are something that drives Long COVID, so perhaps it's related to that. We know that even people with HIV who are on long-term antiretroviral meds are suppressed, undetectable, they do still have slightly higher levels of inflammation, and maybe post COVID inflammation layered on top of HIV associated inflammation can drive Long COVID symptoms. Similarly we know that people with HIV have subtle chronic immune dysregulation that could potentially be compounded by COVID.

And so, you know, and there are a few more things here– but ultimately like these are all hypothetical and now I'm spending a lot of time trying to figure this out, and so I hope that we'll be able to have some answers soon, but right now there are still more questions than answers.

And then just to wrap up. You know, what is Long COVID treatment? Long COVID treatment is highly personalized, and right now is almost exclusively focused on symptom management rather than getting to whatever the root cause of the problem is, because we still don't have a definitive answer on what that might be. What I tell people is that you really need to have a provider who you trust, and who can advocate for you and can listen to you and who can support you, even if they don't have a lot therapeutically to offer right now. There are Long COVID clinics and Long COVID centers of excellence that are popping up. A lot of these lean heavily on rehabilitation and physical therapy. This is not right for everybody, particularly people with Long COVID that has a lot of sort of post-exertional malaise type symptoms that can be worsened. So you know really anything like this needs to be done with clinical supervision.

I actually think that support networks, like this, and groups on social media are really important because so much of Long COVID management right now is hearing people out and making them feel connected, so that when things become available people know what to access, how to access them. And so I think that those groups do a lot of good. And as I mentioned, most studies right now are focused on symptom management but not addressing the underlying pathology; and this is because we need still more advocacy around therapeutics, particularly for investment in therapeutics on the part of the NIH, and willingness to provide therapeutics on the part of companies that have medications that could potentially benefit people with Long COVID.

The best thing that a person, right now, who does not already have Long COVID can do to prevent Long COVID is to get vaccinated. There are multiple studies from multiple parts of the world showing that pre-vaccination to protect against COVID reduces the likelihood of developing Long COVID with a new COVID infection. That being said, the effect size varies. It is as small as 15% reduction to as high as like 60% reduction; but all of these studies show benefit. The new boosters, the bivalent boosters, are available now. The difference between these shots and the older shots is that the old shots were developed against the original strain. The new boosters have both the original strain and BA.4, BA.5. I will disclose that I actually was a participant in the clinical trials for the boosters because I believe in them so strongly, and so I actually got a combined booster as part of a study back in April, and I'm going to get another one tomorrow.

And yeah, some people say there's no safety studies. There are definitely safety studies because I was in one. What there is not is a lot of efficacy data, because the studies have been, been relatively small, and so most of the efficacy data is showing that these elicited good broad immune responses, but we will see this winter what the efficacy is.

So just to wrap up in the last 30 seconds, I think that these are the key questions that I have, is like, What is the mechanism of Long COVID and specifically is there ongoing virus? Because that is a problem that can be intervened upon, as now we enter this new phase where people are getting reinfected. I saw somebody yesterday who is after their third COVID infection. Is this going to increase or decrease the likelihood of Long COVID? You can make arguments either way.

Are we satisfied with symptom management, which I'm not sure we're doing a great job of right now, or are we really trying to reverse the pathology? How do we actually measure this in studies? There's a lot of resistance on the part of study funders and regulatory agencies to accept what I think are actually the most useful endpoints which are how people feel, but everybody really wants there to be something you can measure in blood, and we don't have that. And then, how do we convince everybody who needs to be on board to get clinical trials going and to develop treatments for this, on board to do that? Because we're two and a half years in, and not as much progress as I would have liked, has been made.

Just to give a plug to the study that was mentioned before; Annie Antar, whose an investigator at Johns Hopkins, has been working over the last year to actually answer specific questions related to Long COVID and HIV. JD and Gabriel and Jen and others in this group have helped advise us on this study. The study is enrolling through the end of September, so if anybody you know has recently had COVID, or if you happen to be unlucky and get an infection in the next couple of weeks, please consider participating in this. We're still looking to enroll people living with HIV who get COVID, and we're looking to actually extend the study after the end of the first phase this fall.

This last slide has a few more helpful resources that I won't talk through, but I think are sometimes useful and can be shared. And I will end there on this topic and turn it back over to JD.

JD DAVIDS:

Great, thank you so much. So now's the time when we could do some Q&A with Dr. Peluso. We have one question that's come in, which is how long should people wait after the second MPOX vaccine to get the new booster– the new COVID booster?

DR. PELUSO:

Yeah, that's a great question. You know, the pharmacies say four weeks to space out. I'm actually not sure what data that is based on but I think that that is a safe amount of time. I would not do them closer than two weeks, so I’ve basically been telling my patients four weeks.

JD DAVIDS:

Great, okay. Any other questions for Dr Peluso? Also know that you can keep adding questions along the way, even if we're on to the other segments, and we will chase Dr Peluso down to get answers and send them out with our proceedings from the webinar and the materials. Okay I think that that's it for now. Thank you so much for your, for your presentation. And what we're going to do now is we are going to take a five minute break for people to do whatever you'd like to do with those five minutes. We will have some slides up with information about that amfAR study which is still enrolling to the end of this month, for people living with HIV who are within the first four weeks of a COVID infection, and then we'll be back with our presentations and discussion for the rest of our time. We are, since we started late if people are able to stay a little later with us we may go about a half hour over, but again, we recognize if you have to leave then we'll have the recordings up for everybody. Thank you.

We'll be back at 30 minutes after the hour.

GABRIEL SAN EMETERIO:

Can you see the slides?

JD DAVIDS:

Yes, we can.

GABRIEL SAN EMETERIO:

Oh, great. You can scan the code and it'll take you directly to the website where you can sign up to be part of the study.

JD DAVIDS:

Hi everybody, welcome back. We have, actually we're going to bring back Dr. Peluso if he's still available because he has some slides on MPV or MPOX that if you're able to share, that would be great. So we'll take you up on that.

DR. PELUSO:

Yeah, happy to. Give me a second to just find it here. Are you seeing the correct slide?

JD DAVIDS:

Yes we are, Thank you.

DR. PELUSO:

This is a brief primer on what used to be known as monkeypox, and now is officially known in California as MPOX. And I want to just acknowledge Peter Chin Hong, one of my colleagues who shared some of his slides for me to put this together. So basically I structured this as five things that we sort of hear about MPOX that I want to dispel, and the current state of where things are at.

So the first myth is MPOX comes from monkeys. I think it's, you know, important that whenever there's a new infection we try to understand where it came from, and MPOX was called monkeypox because it was initially identified in some monkeys in Europe in the 50s in a research lab, but actually like the most notorious outbreak of MPOX was in the, before now, was in the early 2000s in prairie dog owners in Wisconsin, which has nothing to do with monkeys, and so this is actually mostly a disease of animals, particularly rodents, and humans and monkeys just are kind of incidental hosts. So it really has nothing to to do with monkeys at all. The Department of Public Health in California officially renamed this MPOX, like two weeks ago. I'm not sure if there's a coordinated effort in the U.S to rename it. There is a coordinated effort among the WHO, within the WHO, the World Health Organization, to rename it.

Renaming it is important because, as I said, it has not anything to do with monkeys. There are lots of racist tropes related to monkeys that I am sure you can imagine, that are very problematic, and people have actually attacked monkeys over monkeypox. It's difficult to rename a disease in the middle of an outbreak. You will remember not too long ago when we renamed SARS-CoV-2 and that was much earlier in that outbreak than we are in the MPOX outbreak now. So that's Myth 1.

Myth 2, you can get MPOX from a thrift store. So the vast majority of MPOX transmission and the current outbreak is skin-to-skin. There's a lot of debate about skin versus bodily fluids. Not going to get into the debate, but those two things are thought to be the highest level of transmission.

There are cases of people getting MPOX from clothing or from bedding. The most well-known case of that is somebody who was changing sheets at a hotel and got a case of MPOX before this outbreak happened, but that is not a major source of transmission. Droplets require really active exposure for a really long period of time, and it is extremely unlikely that somebody will get MPOX from just you know riding the subway or the bus.

Some updates in transmission– there's a case report from Stanford that suggests non-sexual contacts; the vast vast vast majority of cases as you know are sexual transmission either from skin or fluids among men and transgender women who have sex with men. So not a lot of of other cases so far. There are cases of transmission to pets. So there is a case where a dog that had two owners both who had MPOX was sharing a bed with them and the dog ended up getting MPOX. So you know there are lots of other potential incidental hosts of this. There's been a lot of buzz lately about what's going to happen with people going back to college. You know I don't think that there's going to be any risk outside of intimate contact in these settings, but this is in the news now.

There are some cases of household transmission to children. This is not super common. It's not really surprising because we know that close contact is what can cause it, but we're hearing a little bit more about this. But it's important to know that the vast vast vast majority is still sexual contacts.

And so talking about other aspects of transmission, I'm you know I'm not really sure how, I'm not sure it's sending the right message about risk. Until recently, we thought that asymptomatic monkeypox did not happen - they're right, I said the wrong thing - MPOX did not happen. There are cases recently of particularly men in sexual health clinics in Europe who've had asymptomatic screening, with positive tests for MPOX. Some of those individuals have gone on to experience symptoms, but some have not. What is important is that despite a lot of concern about this, as far as I know, as of now, there's still no evidence for asymptomatic spread; and that's because most of this virus lives in superficial areas of skin that are going to be symptomatic if there's a lot of virus there.

The MPOX vaccine is 100% effective: That is not true. It's pretty good, but most of the data that we have is based on the earlier smallpox vaccines that have been repurposed for MPOX. There are cases of people who have exposure, and get the vaccine sort of as post-exposure prophylaxis, who have breakthrough cases. Generally speaking, those cases have been after they got the vaccine, you know, a week after their exposure. We are hearing about some breakthrough cases now in people who were pre-vaccinated and got exposed, but it doesn't seem to be super common as of right now.

There's been a lot of talk lately about the different administration of the vaccine. You know, previously the standard regimen was a subcutaneous, so below the skin, dose of the vaccine. Recently in many settings this has been changed to an alternative dosing: intradermal, within the skin, of a lower dose. This is based on a study from a few years ago that showed, as you can see on the slide, basically similar immune responses regardless of the type of administration; but this is being actively studied now, and I think most of this was driven by public health concern, although there was certainly some controversy around it.

And then I think the last myth is that we are definitively “done” with this. You know, there's been some good news in the last couple of weeks, where it seems like the curve has peaked and is trending down. That's good, that's objectively good news. It's possible that the community mobilized, vaccines were rolled out, and things are improving or behaviors changed. I think we have all seen this pattern several times with COVID in the last two years, so I think that we still need to remain cautious and not declare victory yet, but hopefully this is a positive trend that will result in ongoing improvement, and fewer and fewer people being infected.

And then this just came out about MPOX and people with HIV, suggesting that there's potentially a higher rate of severe, more severe presentations including hospitalization. This was a recent CDC study that was published, I think this weekend, this last weekend, suggesting that among people with HIV, 8% of people were hospitalized because of severity; whereas in in HIV negative people only 3% of people were hospitalized. This has not borne out in other settings, particularly in Europe, so you know, hard to know whether this will really pan out or it just was sort of happened to be related to who was studied here.

And then Gabriel actually shared this with me over the weekend– that there's a recent report of two cases of individuals developing neurologic complications following MPOX. They did not have particularly severe MPOX, but did have severe neurologic symptoms that happened between one and two weeks after initial onset. Quite concerning. Obviously not quite, not that common, but I I think that it sort of bears the question related to what we just talked about for 20 minutes about Long COVID, about whether there can be post-acute sequelae of this infection, because it seems like for many infections that we encounter there end up being unanticipated sequelae. And so I think we all have to be on the lookout for this. I hope that it will not be true.

So it's hard to know where we're at right now, whether this is going to turn out to be all self-limited, whether it's going to have another surge and affect more and more people, whether it's going to establish, you know, a large non-human reservoir related to the many different types of animals that could be infected. But yeah so still too soon to know, although I think the current trends are hopeful; and I think for me, you know, there were a lot of issues with the rollout of the vaccine in particular, but I think the engagement of the community, you know, especially the community of people who perceive themselves to be at risk, at least in SF, was quite inspiring to me. And so we will see where this goes. Okay, that was my primer on MPOX. Thanks.

JD DAVIDS:

Thank you so much. We do have one additional question submitted: Do people living with HIV, or who have had MPOX, get post-viral diseases similar to fibromyalgia, ME/CFS, post-lyme, post-polio, etc?

DR. PELUSO:

Are people with HIV more likely to get those, or..?

JD DAVIDS:

Well, the question is just overall – which we we know people do, including, you know, our co-founder Gabriel is living with with HIV as well as ME/CFS and fibromyalgia– but those are other specifics you'd like to say about it?

DR. PELUSO:

Yeah, I mean, I think the message is that post-infectious conditions are certainly real; and I think that is, they've always been very hard to understand because there's always been a real lack of clarity in many cases about what the inciting event was. I think that what we have learned from COVID in particular, is when so many people around the world were were affected by the same thing at the same time, is that this is probably what's been happening with most of these conditions and it's, we've never been, we've never had this level of information and organization in understanding what sets it off. I wish that COVID never happened, but my hope is that post-COVID issues and Long COVID in particular bring more, shine more light and bring more attention to, and more efforts to understand, all of these related conditions that really have a big impact on people, and that we've done a very poor job of understanding and managing over the last couple of decades. So we'll see if, if that's true, but there is certainly a really concerted effort to figure all of this out now.

JD DAVIDS:

Thank you. There's a there's a great comment from Alex, I'm sorry, Alice K, sharing her experience looking to get a MPOX test in a COVID-safe way, and we'll put that in the proceedings. We're not going to talk about the comment now because of our time constraints, but thank you so much for talking on both topics, and now we're going to move on to our final two presentations from Gabriel and myself and the rest of the webinar, so thank you Dr Peluso and to everyone who asked questions and to our wonderful Q&A monitor Gabriel Lopez.

DR. PELUSO:

Thanks so much, thanks for having me.

Managing Illness at Home


GABRIEL SAN EMETERIO:

Hi, I'm Gabriel, I'm back, and yes like JD mentioned I am a person living with myalgic encephalomyelitis (chronic fatigue syndrome) with fibromyalgia and also HIV; all complex chronic conditions. And I had COVID recently for the first time, so I'm part of the study that we mentioned before. You will get information on that study and how to join it if you have had COVID for the first time in the past four weeks and are HIV positive. And that really got me thinking about, how do we care for each other at home? And so that's what my present- and while we're ill, and that's what my presentation is going to be about. I'm going to share my screen.

Okay so managing illness at home and how to prepare ourselves, just so there's just general suggestions and anecdotes; by no means you should take it as, you know, medical advice or in place of medical advice. You know, always consult your physicians or licensed healthcare provider to make the right choices for you regarding your health. Remember that you know your body best, particularly when it involves taking any prescription or over-the-counter medications, right? Like Dr Peluso said: if you can, get vaccinated. I do invite all of us to treat with kindness those who are not vaccinated for whatever reason. Some people cannot, some people don't want to. How do we hold them with compassion? And if they get sick we don't blame them, and are there to support them.

So I believe that we should talk to our doctors or medical professionals ahead of time. I did, and it was very helpful, because I saw a friend of mine get COVID for the first time over a holiday weekend, and it was really difficult to access treatment; and he's a long-term survivor so he really needed Paxlovid, and eventually got it from a neighbor, but that was just complete luck. So talk to your doctor ahead of time.

The measures that are in place at this point are not sufficient, you know? One-way masking is less effective than if we were all wearing masks. So it seems inevitable that at some point we might get COVID, we might get the flu; the season has officially started and we could be at risk of getting MPOX. So discuss your treatment options with your doctor and discuss the side effects, also interactions with any of the medications that you might be taking. See how easy it is to get in contact with them, or how to get in contact with them when you develop symptoms, you know? What to do over a holiday weekend, where do you go to get tested, and when is the best time to get tested, right?

For MPOX, for instance, I'm not quite clear yet as to when one should get tested etc., but we'll try to send information on that. And additionally, should your doctor not be available, or if you don't have a doctor who's responsive, you know, locate the nearest urgent care facility or emergency room; that's helpful. Have their phone numbers always handy, and know their hours of operation. Also find out if there are any hotlines or local health department phone numbers or service agencies that can help you get access to treatment and vaccines, free testing, and also know their hours of operations, and particularly during holidays and weekends; you don't want to be left out in the cold over a long weekend.

So stock up on the basics for conservative treatment at home. That would be something to reduce fever and treat pain; ibuprofen or acetaminophen are recommended. Those are, those can be covered by some insurance plans, if they're prescribed by your doctor. They're also not that expensive. It's harder to plan on whether you'll need antihistamine or decongestants, cough syrups, or cough drops. Well it's good to make a list or, you know, depending on your symptoms and identify a person – and we're going to talk about identifying people in our lives that can actually help us when we are sick– but these are some of the things that are good to have. They're not very expensive. If you live in a city like New York where you can have everything delivered then that's, that makes it much easier; but if you live in other areas where it's harder to have things delivered, it's better to stock up on these things. I can tell you from experience, Paxlovid leaves a really bad taste in the mouth consistently while you're taking it, so cough drops for me were a lifesaver. I didn't have a cough while I had COVID but I needed the cough drops to just eliminate that bad taste from Paxlovid.

Have a thermometer and a pulse oximeter just in case. They're always good to have. And again, ask your doctor about the potential treatments in case you get COVID-19, in case you get the flu, or in case you get MPOX, or MPV; that's that's how I, what we've been, that's what we've been using because that's the last webinar I attended, that's how they were referring to it. But if MPOX is the thing of today, well..

Ask your doctor about what to do, just in case; and what the interactions are with any remedies, natural remedies or over-the-counter medications that you're taking, as well as your prescription medications. I know that, for instance, Paxlovid for COVID-19 has a lot of interactions with very common medications such as statins for cholesterol.

The duration and severity of symptoms vary from person to person, so it's good to have a short-term and a long-term plan, even for, especially for the required isolation periods. I, for instance, experienced the Paxlovid rebound; and my rebound wasn't like President Biden's, which allegedly had no symptoms. I was undeniably sick. I had, I was very symptomatic when I rebounded; so I had two separate isolation periods. I was sick for over two weeks, and I did not plan on that. So I had to, I ordered, I have- I was very congested, I ordered my decongestant for, you know, seven days; and then I rebounded and I had to do it all over again. So have plan A and plan B in case you need.. in case you can't have things delivered and you need someone to assist you with going to the pharmacy and getting those things for you.

That takes us to building relationships with people, and identifying those people who can give us, for instance, help us with delivery, getting us things. Basics like groceries, hot meals, maybe medications. If your pharmacy doesn't deliver, maybe they can pick up; you can assign a person for pickup for your prescriptions. And moral support is really important, right?

If you get a PCR test, if you're getting tested for MPOX and you have to wait for results, or if you just have a suspicion that you may be sick. Who can you talk to, who can you turn to, who's a good listener? Who can listen to you and support you morally, while you're going through– and emotionally– while you're going through these waiting periods, and also through the isolation periods?

And so it's time for pod mapping. I translated it into Spanish as ‘capsular’ because it's like a capsule, you know, for health. So this mapping, Pod Mapping Worksheet, was created by Mia Mingus for the Bay Area Transformative Justice Collective. They use it for transformative justice support, but we're adapting it to health; and when you get the slides as a follow-up email you'll be, the links will be live, and you'll be able to download this sheet that you can see here, so that you can map your own pod.

Mia Mingus– just very quickly– is an educator, a trainer, a writer for transformative justice and disability justice. She’s brilliant. She's a queer physically disabled Korean woman, transracial and transnational adoptee raised in the Caribbean. There will be a live link to her blog, and there's a photo of her in black and white. She's a Korean woman, smiling in the picture, with long hair and glasses, and she's sitting on a wooden chair with plants and trees around her.

So back to pod mapping. This is what the pod map looks like when it's empty, and what you're going to do is, first, from a strengths perspective, you're gonna pose these questions for yourself, right? What are the people in my pod good at? Like people whom I have very good relationships with. What are they good at, right? I may have a best friend that is not the best at responding to emergencies. For instance, for me, in my emergency contacts, it's very important that one of them at least speaks Spanish. My family is in Mexico and not all of them speak English, so it's very important for me to have somebody in my pod who speaks Spanish and can get in contact with them if I, if something happens to me, and I'm not able to talk to them.

You can ask yourself, who responds well to emergencies? Not everybody deals with emergencies well, right? You can ask, who can I ask for help, right? And excuse my brain fog; it affects me more since I have had COVID. And you can ask, who's a good listener in my life? Same thing for you; who can I help, who can I reach out to and have these conversations about giving and receiving care? Who's a good, who can I be a good listener for, who can I provide more moral support for? And when they're sick, you know, have these conversations. When I'm sick, can you help me? And what are you willing to do for me? So, and when you are sick, how can I help you? And what am I willing to do for others? These are important things to think about because living and getting sick, it's going to happen sooner or later for all of us unfortunately.

So when you're mapping your pod, this is you, at the center in the gray circle; and in the circles that are bolded, right around you, those are the closest people to you. These are the people in your pod, the people that you will go to to have these conversations, to ask these questions directly, right? How can I help you, how can you help me, how can we be of support to each other?

Mia Mingus points out that in her work, they found that most people have very few people in their pod. Maybe one or two. It's not uncommon to have few people in your pod; the point is to identify them. You are encouraged to put names in the circles, so that it's really clear for you; and that you grow relationships, so that you can, and nurture relationships, so that you can have more people in your pod in those bolded circles.

Next are people in the dotted circles. These are movable people. These are people who you know, who you have a certain level of trust, and they can do things for you, you can do things for them, but maybe they're not as close to you, but in a pinch you can reach out and they might surprise you, that they may be willing to do more than you thought. You know, it's always good to give people the opportunity to be different. That includes us. Give them the grace, and give ourselves the grace that we would give others. And when somebody wants to help and offers help, let them, if they want to help you, because that is sometimes a difficult thing to do. It's sometimes easier to help others. And last but not least, you identify–in the big circles on the very outside–communities, networks, or groups that you can reach out to for help, right. That includes informal groups of people or agencies that provide you with services, or like I said, you know, they're, your doctors could be here, or healthcare providers. And that was it for my presentation. Thank you very much. I'm gonna stop sharing my screen and pass it on to JD.

JD DAVIDS:

Thank you Gabriel. I'm gonna do my presentation and then afterwards we will have time for some discussion and then close out. As I said in the chat, due to our earlier technical difficulties, we originally had planned on ending now. We're going to extend for up to half an hour probably, maybe not even that long; but we recognize that some people may leave and we encourage you to do what's best for you. We will be sharing the recording transcripts and slides afterwards.

A Values and Data-Based Approach for COVID-19 and MPV Risk Reduction for Meetings and Events

JD DAVIDS:

So I'm going to present on- I'm sorry, I pressed the wrong thing of course. I am going to present on ways of thinking about COVID and monkeypox risk reduction at meetings and events, recognizing in particular with MPV or MPOX that this is sort of emerging, we're learning more so there's more of an emphasis on on COVID, but some things on MPOX.

Many people will get COVID and MPOX this year, but we can still plan meetings that seek to reduce risk. Many of my materials today are courtesy of People's CDC, which is a group that gathers activists and public health professionals to provide some of the information–which is not getting out as clearly maybe from some government voices–about what is the current status of COVID and what can be done about it.

So this is the current COVID map, given the way that CDC used to report it. You'll see that most of the country as of September 9th, 99.6%, is at least at extremely high levels of COVID transmission; because the CDC now focuses on hospitalization rates, and also due to some changes in reporting, it can make it seem like there's a lot less COVID going on out there.

So when thinking about how we go about our meetings, gatherings, conferences in the HIV Community, taking a values-based approach, it might be good to look at what corollaries we have in our own sector and movement. So we think about who is responsible for HIV prevention and the ways that we think are sort of the most values-based ways of proceeding; is it just people living with HIV? is it people who are HIV negative partners of people living with HIV? Does it include public health systems that provide information and tools for HIV prevention? And I think for many of us in the HIV community we recognize that it's not just the responsibility of people living with HIV to care about or do something about transmission acquisition; it needs to involve all of us, and that's why we have measures like PREP (pre-exposure prophylaxis) that's used by people who are HIV negative to prevent HIV acquisition.

And when we think about who is responsible for COVID prevention, it might be useful to think about how right now, someone in the United States dies of COVID every 3.5 minutes. When there was one AIDS death every 8 minutes, you saw ACT UP members taking over Grand Central Station in New York; and we have far more COVID depth now, so it's still a very real issue.

This is, on the top is a poster from public transit in New York City from 2020 through mid-2022, emphasizing taking care of one another – like Gabriel was emphasizing– and one thing that people can do is wear masks. And just this month they were replaced by some really, just really just disturbing images, that the MTA is getting a lot of flack now for, appropriately – saying not only that the regulatory change and state policy are that masks are no longer required on public transit, but really, many of us feel, sort of mocking the realities of people who are at higher risk of COVID harms by saying “you do you,” that it's sort of an individual choice, as if it doesn't have consequences for others.

So we believe that the values of the HIV community can guide approaches to our prevention efforts in our events and meetings. When I think about the values of the HIV communities that I'm involved in, that includes:

So we see prevention as a shared responsibility. What would our gatherings look like if all were responsible for reducing risk of harms? Even if we ourselves are not at higher risk of those harms? So for example: two-way masking (where everyone's wearing high quality masks regardless of their real or perceived risk of severe COVID-19 harms) means that everyone present is collaborating on reducing community COVID-19 viral load in the air at the meeting.

Two-way masking means even if any one individual is not completely effectively masked (because of gaps in masks, problems with sizes, taking a mask break) the likelihood of harm is still reduced– whether or not that person is at elevated risk.

So that is to say, that (similar to how HIV-negative people are responsible for ourselves and for the whole community, as far as being able to benefit from and choose to use HIV prevention), people who are not necessarily at high risk of COVID harm (or who don't think they are), have some responsibility to bear – if we have a community that values shared responsibility.

We need to accept there are people at our meetings and events who are at greater risk of harms from COVID-19 and monkeypox; and Dr Peluso shared some of them, such as the higher risk of Long COVID in people living with HIV. But it also includes issues such as, as we know that COVID harm is not equally distributed. It's felt most severely in black, brown, indigenous communities; among elders; and people with economic precarity. And we know the economic harms of the long MPX or MPOX isolation periods can be devastating to people who don't have large financial resources, for example.

So I'm not going to read through necessarily all of these, but there's a series of questions that we've developed that we encourage organizations to consider when thinking about meetings and events.

Do meetings and events need to happen as they have previously?

And we have some other questions under each that can help with planning.

We believe that's important to look at: should we change the culture and economics of gatherings? Especially for those who control funding and budget allocations. How can we reduce dependency on gatherings, especially large conferences which are a source of income for many organizations that host them? How can they provide funding and technical assistance and capacity building for best practices for hybrid and remote events? They're difficult. We only do remote events, and we had difficulty today with Zoom technology.

Can we make it feasible economically to have refunds for those who can't come or are maybe sick, so there's not an incentive for people to come when they're not feeling well because their organization will lose what they put out for them to go to a conference. And to recognize which groups and individuals will be at greatest risk always, regardless of pandemics, from travel or public gatherings; including those at greatest risk of travel violence and detention. For example, particularly for trans women of color, undocumented immigrants, and always for people who may be immune-suppressed or have complex chronic conditions or disabilities that can be complicated. For example there are people who have died when an airline has mangled their wheelchair which led to consequences, which led to fatalities.

So I want to put out there a very good example of a conference that looked at all this quite, that looked at COVID quite seriously, for the recent gathering: Netroots Nation. You can look at theirs as somewhat of a best practice, of what they considered and what they provided.

This is straight from the CDC, so I'm not going to go through all of it, because you can find it from the CDC. I meant to put a link- we'll link it when we transmit this. The Event Organizer Toolkit; it's meant for many events, but events that may have currently the highest risks of MPOX transmission, such as where people are having sex or where there's really close skin to skin contact; and a lot of it has to do with hand sanitizer and for washing shared items, changing bed linens and towels, but I think we also need to make sure that the changing of those things are done the way that's also safe for the workers who are doing that as well.

The rest of the materials, many of the materials are from People's CDC, who we already mentioned, that has a sort of seven aspects of using a layered approach to reducing COVID transmission. I'm not going to go through everything, but we'll emphasize some points that I think are both important and over which groups may be able to have the most control.

Oh sorry that's what happens when you insert links, oh I made the graphic a link. One moment, okay.

So, the layers of protection have to do with the reality that COVID is spread most easily through air, so four layers of protection for air are: indoor air quality, well-fitting high quality masks, increasing physical distance, and reducing time spent close to others indoors. Realistically what's sort of the most able to predict in some ways, and to have data on, is particularly the first two. So we're going to focus on that.

You can also have three layers of prevention that are about limiting the number of people you're around, getting vaccines and boosters, and using testing.

So improving indoor air quality – and this can happen to workplaces of course as well as events – is opening windows and to provide filtration, which can include these homemade Corsi-Rosenthal boxes. We made 14 of these for my kid’s school, they cost around $100 each for the supplies and can be very easily assembled without special skills; and they rank as highly as, you know, pre-made HEPA filters that cost a lot more. And outdoors is the best ventilation.

Clean Air Crew is an entity that is linked in the People's CDC materials; you can find where they go through different types of filtration and air systems that are in buildings. And so if you look at their materials, they can help you figure out where you can intervene in terms of improving air quality. So you'll see for all of these kinds of building system types, you can add in-room HEPA air filters, air cleaners. Some systems have HVAC filtration, where you can have, make sure that you have up-to-date and the right kinds of filters. And then what we hope we're going to be seeing more of in coming years, is about germicidal ultraviolet light; it's something that can be very effective for pathogens in the air, but it's not available in most places.

 

So when it comes to masks, not all masks are created equal. The best are well-fitting, high quality masks– N95, KN95, or KF94, which stop tiny virus particles and droplets. And they need to be worn correctly to work. Now, again, we know that not everyone wears condoms correctly, not everyone wears masks correctly, and in a crowded room, or a room with many people, not everyone's going to be doing it perfectly. That's why it raises the importance of having two-way masking, because then there's less people who won't be unmasked at all, so there's more of a general harm reduction of where there may be incorrect masking.

In order to have them on hand, it's important to order them in advance; it can take about a week for places like Project N95. And they get much less expensive, like for these N95s and KN95s, when you buy them in bulk. If you have staff, and you're asking people to mask every day for example. People want to have clean masks; if people have five masks, it's recommended that you have Monday, Tuesday, Wednesday, Thursday, Friday [masks] in a paper bag, that you can put your mask in at the end of each day, that's labeled with the day, and that it will have time to for anything that's on it to sort of die off before you wear it for the next week.
 

Universal masking reduces the amount of virus in the air. This is from the Urgency of Equity Toolkit from People's CDC, and it includes links to data that really talks about how two-way masking is more effective than one-way masking. One-way masking meaning “you do you,” right? You want to wear a mask, you think you need one, you wear it. It really isn't as effective, and so it may be that without saying that, that for your own events that you say, “because of our values, because of shared responsibility for one another, for our event, we are going to have masking. We're economically viable, we're going to provide those masks.” I talk about that a bit at the end.

Masks work, but so does misinformation, so there's a lot of misinformation out there; but regardless of individual choices, political beliefs, or regulations, you can protect those at greatest risk of harm by having clear mask policies.

There's two main kinds of COVID testing; there's PCR tests and rapid tests. if you test too soon about after being infected, both a PCR and rapid test may give an incorrect result. Testing before gathering indoors or unmasked increases the chance of identifying asymptomatic cases. So as we see here this is some data from Ontario, it's a great article with a lot of useful charts and information. We look at this modeling based on unvaccinated college students in Ontario; if people are testing with rapid tests – and this is with Omicron – you see the frequency of testing per week really reduces, the reduction of, of how many cases of COVID there will be, because you're taking more opportunities to catch cases. PCR testing, which is becoming harder and harder to get, can find cases that rapid testing will miss.

So this was based on real people in Ontario who tested daily;  from the day they tested positive on PCR, and then they started testing with rapid tests. One day after their first positive PCR test, the next day, Day 1, no one tested positive on rapid. Less than 20%, on Day Two. It takes up to Day Four, til all were being found on PCR testing.

So when it's feasible, particularly if you're having a small meeting, to be able to help people access PCR testing in a window of when they'll get the results back before the meeting, that could really increase your accuracy of understanding who is truly positive, right? So you could do PCR testing two days ahead of time; I know in New York now you can get results back in 24 to 36 hours; I know that's not available everywhere. And then the day of the meeting, do rapid testing.

Increasing physical distance is important to understand. The guidance about six feet was based on a misunderstanding of how virus particles travel. So I have down here– I’m paraphrasing– distancing is not a substitution for air filtration or ventilation and masking. Tiny particles can linger for hours in air and spread through a space. There's also no specific number of minutes or distance that's proven to be safe indoors if unmasked.

There's also limited data on COVID spreading outdoors and crowds; we know it happens. While there's excellent ventilation, being close to others unfortunately could still spread COVID.

So what I have here is recommendations for layering COVID-19 prevention strategies. There's a, there's a lot of them so I'll go through them fairly quickly, but you can see them in writing when we have the slides. First, let people stay home without repercussions. Provide accurate up-to-date information ahead of time on COVID-19 and MPOX, including information on Long COVID.

Wherever possible provide remote, parallel, or hybrid options. Parallel means two different meetings: one in person, one remote. Provide masks as part of the registration process. Sometimes people are sent materials ahead of a meeting; send masks and rapid tests out with your materials. If possible provide the tests themselves, or information on access to testing.

If you're using a vaccination requirement, then establish and practice your protocols for assessment, and values-based policies for non-compliance. Is this symbolic, and you're not really going to check? Are you going to check, and what if someone says “no, I'm here at the door and I'm not vaccinated”? How will you uphold your values in dealing with that, so you're not making your frontline staff or the subcontractors running the meeting have to deal with something?

Make it clear ahead of time if you're going to have a masking policy that it must be at all times, and that rapid tests must be used in the morning of the event; these are your policies. Explain why you're doing two-way masking. Explain it's not possible to look at people and determine who is high risk. Avoid unintentionally ableist messaging such as “we're all ready to get back to normal” or “we know everyone will want to be there,” or inaccuracies such as “during the pandemic” used in past tense. Use it as an opportunity to put out clear information on MPOX and COVID-19 testing, vaccination, and how to get treatment–including the tricky aspects of how to get Paxlovid, monoclonal antibodies, and TPOXX, the treatment for MPOX that actually could, also it reduces suffering and it reduces how long someone could transmit to others.

On-site, provide masks.Provide rapid tests for those who haven't taken them. Reinforce the masking message including your values-based messaging for two-way masking. And send thanks to those who stayed home, to normalize that as a healthy behavior. Explain your other options, including ways to switch during the day if anyone feels ill or prefers the other option. Provide and explain the use of supplemental filtration such as Corsi-Rosenthal boxes; and recognize the ongoing losses and harms of pandemics, putting out support options for those who need support for the grief and the loss that they have experienced.

Provide outdoor viewing monitors or side room monitors for those who are not able to mask. Provide hand sanitizer. Develop, practice, and implement protocols with staff and volunteers for again dealing with attendees who are not effectively masked, or resistant to masking. We've put people in harm's way in a politicized situation who are expected to enforce masking requirements without giving them the support they need. We have control over that to some degree in our own organizations, to figure out the scenarios and use our own counseling and practices of justice to understand what to do ahead of time; what are you going to do?

Send people home with rapid tests, with information also on how to report a positive test so you can notify other attendees. If appropriate and feasible, seek to provide on-site vaccination through a van outside, through a side room, with health professionals– for COVID-19 (both primary series and the bivalent boosters) and MPOX.

So that was a lot, fairly fast, but these are some thoughts on how to take on the challenges of making our meetings and gatherings as safe as possible; and to also change the culture of our meetings, to really examine if we need to do things differently, so we can live our values and our practices in our communities. Thank you.

JD DAVIDS:

Okay well now we just have a few minutes left, as you can see, I wasn't able to see if there's any questions. So, oh thank you, we have, we have a compliment, thank you so much for your compliment. So now we'll go to our our final closing. We have a few prompts and thank you’s to give, so I'll turn it over to Gabriel.

GABRIEL SAN EMETERIO:

Can you see the prompts?

JD DAVIDS:

Yes, we can.

GABRIEL SAN EMETERIO:

We're gonna ask you to take a moment to reflect, and we're going to send these prompts also to you in the follow-up email; but we want to ask you to, you know, all of us at some point in our lives will give care and will receive care, so our invitation is to reflect on on the presentation and consider who you will reach out to in the weeks ahead to explicitly offer to be a part of their care pod, and/or who will you ask to be a part of your own pod, right?

And second, how we plan, conduct, and follow-up on our own meetings or events is an expression of our values. What values do you want to center in your life, your work, and/or your workplace? How do they address disability, isolation, or marginalization? We invite you to create a note or prompt so you remember to center these values in your next discussion or planning opportunity. And like I said, the slides, the following slides will be sent.

Keep in touch with us. Thank you for being here. These are all our channels and social media, and Springboard Health Lab is our incubator. If you want to get in touch with them, that's who to contact, and thank you very much, thank you for bearing with all our technical difficulties. It's not easy to have these remote events, as we saw that today, and make them fully accessible. We really wanted to have live Spanish interpretation and we had difficulties with that, but we thank you our ASL interpreters Sade and Desiree. Thank you so much for being here, for making this webinar accessible for the d/Deaf and hard of hearing community.

JD DAVIDS:

And also thank you to Avery, our Zoom tech, who really did everything possible to make things go smoothly and was indispensable here.

GABRIEL SAN EMETERIO:

And to Michael Peluso, Dr. Michael Peluso, and Alecia Smith for doing the live tweet, Gabriel Lopez for helping us monitor the Q&A, and Jen Hecht for everything she does for us. She's the head of SpringBoard Health Lab.

JD DAVIDS:

Okay, thank you everybody. We'll link in case other comments or questions come up for the next like two minutes, but then we're gonna log off

GABRIEL SAN EMETERIO:

Yes, thank you.

Oh we're glad, yes, closed captioning does help with brain fog and cognitive challenges. Yep, it also helps neurodivergent people, I believe, to follow. It’s important that we got it working, thank you Avery.

JD DAVIDS:

We have a comment from Alice that I want to just briefly address, which is about there are some challenges for Corsi-Rosenthal boxes and other noisy devices that create barriers, disability barriers, to people with auditory processing disabilities and hard of hearing people, and as well as the diminished experiences of hybrid meetings for people online, particularly for audio quality. And yes, I actually meant to put in my slides, and I will rectify this, in terms of saying that when using air filtration other devices that create sound and for our meetings that it will be important to invest in auditory tools that can create more clear sound for people, and to also acknowledge the challenges that do exist. And I do find that hybrid meetings, as opposed to either in-person and remote, they really can be sort of the worst of both worlds. And in recognizing it's so important that those who have the capacity to develop best practices and fund them– to have better technology in place to mitigate those problems, or to create better alternatives and train people on what are the best options–to start funding those things, so thank you. Those aren't, there's no solutions but those are some things that I wanted to include and to reference that I think would help, but there's much more we need to do.

Okay thank you. We're gonna wrap up, and thank you all for being here and we hope to see you next time. Bye.

GABRIEL SAN EMETERIO:

Thank you, all.