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Monkeypox (MPV) has become an unprecedented epidemic and a crisis. In this episode, we hear a live town hall where we discuss how to address disparities in accessing MPV vaccines and treatment
Every episode of Real Talk with NMAC provides people of color, allies, and advocates in the community — regardless of gender, sexual orientation, or gender identity — who are at greater risk of HIV/AIDS with a greater understanding of the role racial inequities play in the epidemic, and how to address them.
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Damian Cabrera (00:00:10):
Hello, this is Damian Cabrera and welcome to Real Talk. In this episode recorded live at USAHA. We will be discussing monkeypox with federal officials and also with community based organizations. Hope you enjoy and make sure you share it with your friends.
Daniel Griffin (00:00:27):
Good evening ladies and gentlemen, and welcome to tonight's Town Hall on our federal response to monkeypox. It gives me great pleasure to see a few faces. It's really, really bright up here, so allow me the grace that that comes with. I am Daniel Griffin. I have the pleasure of serving as the NMAC monkeypox Coordinator since the beginning of this response. Outside of the everyday work that I do, I am also the project manager with the HIV Vaccine Trials Network. Over the next 90 minutes or so, we will dive into a discussion allowing our federal partners to provide some additional information on the national response as we look at monkeypox. We'll also open a dialogue with some community response, specifically here on the island and also back on the mainland. And finally, we'll open up some Q&A from you all. First up, before we dive in, we'll actually have our executive directors from AIDS United, the National Coalition of STD Directors and the AIDS Institute brings greetings.
Jesse Milan (00:01:40):
Good evening. I'm Jesse Milan, the president and CEO at AIDS United. And it's my pleasure on behalf of the HIV, STI and viral hepatitis Partnership to welcome you tonight. The partnership involves five organizations who have been banding together since the election of Donald Trump to speak with one voice on issues that are important to us in the HIV, STD and viral hepatitis community. They are the AIDS Institute, AIDS United, NASTAD, the National Coalition of STD Directors and [inaudible 00:02:16] and NMAC.NMAC has made it so possible for us to host tonight's Town Hall event, which was not originally scheduled, because we know that the monkeypox epidemic is growing and become a crisis. And it was important for this to be superimposed in this conference so that we could have this conversation with our federal partners who are leading our monkeypox response. We're thrilled to be part of this. We're thrilled that you're here and we are thrilled that our federal partners are offering an update to us tonight on what is happening from the federal level to stop this crisis from infecting this all. And so with that, I'd like to introduce David Harvey and Rachel Klein from the AIDS Institute to bring up greeting from their organizations as part of the HIV, STI, and Viral Hepatitis Partnership. Rachel.
Rachel Klein (00:03:17):
Hi. Good afternoon everyone. I'm Rachel Klein. I'm the Deputy Executive Director of the AIDS Institute. Thank all of you for coming this evening after a long couple of days and a great couple of days of the conference. I know everyone's tired, but I think it really speaks to the importance of this issue and I'm very excited that the AIDS Institute is able to work on this issue with all of our allies and to be part of this evening. And I really want to thank all of you and to our speakers tonight for coming to have this important discussion. Thanks so much.
David Harvey (00:03:57):
Welcome to tonight's Town Hall meeting. My name is David Harvey. I'm the Executive Director of the National Coalition of STD Directors. This town hall could not come at a more important moment, so many thanks to NMAC, the partnership, the NCSD team who leads the National MPV Work Group of National Organizations. I really look forward to this evening's conversation. Is MPV, otherwise known as monkeypox, an STI? I hope you all can answer that question tonight. I also hope that we can get into issues of syndemics. A syndemic approach to ending HIV, hepatitis and MPV. Without a doubt, this very long summer of three months battling this outbreak reflects some really innovative work that happened led by the infamous indefatigable, Demetre Daskalakis in the White House. And now John Omerman, who is here tonight as well from CDC leading the response.
(00:05:08):
I hope that we can take stock of some of the really groundbreaking initiatives and work that has happened as a result of our community, all of you jumping into action to deal with this outbreak. Welcome to tonight's Town Hall meeting. I want to recognize and thank all of you for jumping into action to deal with this outbreak. The work is not done. We have horrific disparities in accessing vaccine and treatment. The work will continue and I know all of you will take stock of that tonight. Thank you very much and welcome.
Daniel Griffin (00:05:47):
Thank you.
(00:05:51):
Let's give them all another round of applause. Before we continue, I'm going to have my colleague Damian Cabrera, where is my friend Damian? Come on up, introduce yourself, friend, and please tell us how we're going to operate today.
Damian Cabrera (00:06:13):
Hello everyone. I'm Damian Cabrera, program manager for the treatment division at NMAC and I'm really excited to have this conversation. We have been working with Monkey Box for quite some time now and we have put a lot of effort into having this conversation. I'm really, really looking forward to hearing your comments, your thoughts, your feedback. This is a conversation, we want to make sure that there's space for Q&A and to make sure that that your concerns, your feedback is heard. Thank you so much for coming here. I know it's been a long day, but I am happy to see you all here. I do wanted to say for those Spanish speakers, [foreign language 00:06:55]. Thank you everyone.
Daniel Griffin (00:07:16):
Thank you, friend. I'll go ahead and call up our federal partners to the stage. I'll also call up our community of partners to join us. We will transition over to the love seats on our Oprah couch set and we'll begin the conversation from there. Thank you again.
(00:07:37):
I'll actually have Dr. Jonathan Omerman begin. And Dr. Omerman serves as the incident manager on the CDC monkeypox response. Any opening, comments or statements?
Dr. Jonathan Omerman (00:07:50):
I do. First, I wanted to thank you Danielle and Damian and the council of five for thinking about this session and for inviting me to be a part of it. Last year, I remember talking with a number of you about how it was really a difficult time for our communities with COVID and with the hurricanes and with the economic and social reverberations of those experiences. And also we were struggling to continue to promote health justice and prevent HIV in the middle of turbulent times. And just as we were over the brunt of all of that, monkeypox hit. And it seems unfair.
(00:08:38):
It seems unfair because it found itself within all of this social inequity and has resulted in both causing thousands of people to be sick in the United States and throughout the world, and really affected so deeply all of us who had thought that we were moving beyond and succeeding somehow with HIV and struggling with other STIs. And suddenly we have monkeypox in the middle of all this, really challenging our structures and bringing up all of the issues that we have spent our time over the past two decades struggling against.
(00:09:25):
Tomorrow we have a plenary session where we're going to go into more details and I hope that this time would really be a time to listen to you all, to hear the issues that are most important for you right now and to hear from you what you wanted us to do differently so that we can do a better job. Certainly, in my deployment as instant manager for CDC on monkeypox, that's my intent, is to take good information and do a better job, we can. And then to see how monkeypox ultimately ins sconces itself within the syndemics that we spend our day to day lives working on.
(00:10:01):
I just wanted to end by saying that monkeypox is divisive and so are many strains of America these days. But it reminds me that 1977, James Baldwin said, "People can cry easier than they can change. And those who say it can't be done are usually interrupted by others doing it." And I think we have been sad and we've been frustrated for a long time, but I can speak for CDC and for my center staff and state unequivocally that we are committed to working alongside all of you to continue fighting until the end, knowing that it won't be easy. Thank you.
Daniel Griffin (00:10:36):
Thank you so very much. Next up, we'll just have some open awards from Dr. Susan Robilotto. Okay. She is serving as the monkeypox response from the HRSA HIV/AIDS Bureau. Please.
Dr. Susan Robilotto (00:10:54):
Thank you. And again, as Jonathan said, thank you for having us tonight. We're really looking forward to hearing what you have to do. Since the monkeypox outbreak started, HRSA has been working with HHS, particularly CDC, to make sure that the response happens. And with our Ryan White programs, we know our trusted providers in the community. It was really important for us to get the resources and information out to our Ryan White Clinics as quickly as possible. We've had several of our, have you heard, monthly webinars that we've have included CDC and updates for MPX, as well as making sure that we had access to resources. We set up a webpage on the ryanwhite.HRSA.gov website, and have also sent out several letters to make sure that Ryan White recipients know they can use their resources for the treatment, for the vaccination support that they need to get the vaccine out to the client, as well as any other medical issues related to MPX can be taken care of in the clinic.
(00:12:18):
We also did receive a allotment of JYNNEOS vaccine that we wanted to get quickly to our clinics. And how we did that? We went with our Part C programs that are dually funded with our health center programs at HRSA, and were able to distribute vaccine to 50 clinics and quickly get it out to the people that needed it most. With that, CDC also has updated their guidance with PrEP, which we really appreciate, so that not only can our Ryan White clients be vaccinated, but also their contacts and close relatives in the clinic can be vaccinated as well. We'll continue to work to make sure that our Ryan White clinics have the information and are able to leverage resources to respond to the MPX outbreak.
Daniel Griffin (00:13:20):
Thank you so very much. Next up we have Dr. Demetre Daskalakis, who is serving as our White House coordinator. Dr. Daskalakis, please.
Dr. Demetre Daskalakis (00:13:31):
Thanks Daniel. This is the part that should be did this summer, is what we're going to talk about. First of all, I'm serving as the deputy coordinator for the White House response to monkeypox. And I'll say that thinking about the strategy and the conversation, I'll say engagement with community has been really pivotal in terms of nuancing and calibrating the response at the White House. So I want to thank many of you who we've leaned on heavily to engage with us. Really, the White House response has focused on a couple of areas, equity, access and now demand. I'll start with access before equity because it was actually one of the more important things we had to deal with early on to be able to open the door to strategies that would allow us to address equity in a different way.
(00:14:18):
Again, vaccine supply was a significant issue at the beginning. And really through three very separate domains, we were able to increase vaccine supply in the US. Whether it's through the intradermal route that allowed about four doses per vaccine, asking Bavaria Nordic to speed up their production or creating a fill and finish plant in the United States. Those three things really allowed us to increase access to a vaccine that for a while didn't match the demand in terms of supply. And just thinking about the outbreak, I often remind people about all the pivots that we had to make, and I think you all spoke about a couple of them. This outbreak is unprecedented in terms of what it looks like. This is not how monkeypox usually goes. The fact that it moved through a population, a PEP strategy was the way it started, didn't work out because we didn't really know everyone's contacts.
(00:15:11):
Then came PEP plus, plus, really limited primarily by the fact that we didn't have enough vaccine supply to address demand. And then with appropriate vaccine supply and the contour of the outbreak and the demographics becoming a lot more clear, CDC is able to move in the PrEP stance, which I think is so valuable. First, access, I focus on vaccine, but testing is also a part of it, making sure there's adequate testing as well as venues for that testing.
(00:15:37):
Equity then is really at the base, one of the key strategies that we had to work on. And really thinking about the way the vaccines rolled out, there was a mismatch between who was getting vaccinated and who was getting the infections from really the very beginning. Ideas like the large event equity interventions that CDC worked on, the smaller equity interventions, listening to people who said, "I don't want to get a vaccine on my forearm because literally it's stigmatizing, because there's a mark" and being able to extend that to the upper back and the shoulder, really comes from the engagement and from the desire to address equity.
(00:16:12):
And important to mention that some things come directly out of the HIV/STD playbook, this is about a syndemic. Monkeypox is not a disease that lives in isolation. And one of the examples I think that's really important is that when you look at the PrEP guidance from CDC, it says "Don't sweat the details in terms of a risk assessment." Does that sound familiar? Those are PrEP guidance out of HIV. The inspiration of that to address the stigma and to address the barriers is critical, and now we're at the point where we have a demand issue. We have vaccine, we have strategies and we have a lot of folks getting second shots, but really a lot of individuals need to get their first shot. And it's really about identifying ways that we can leverage our relationships with the community, hear more about the engagements and yes, do syndemic work.
(00:17:00):
I'm just going to toot everyone's horn here for a second. CDC releasing a very important letter saying that there's flexibility and STD/HIV funding. Ryan White releasing a letter saying to use Ryan White funds to support monkeypox, SAMSA releasing a letter to say that mental health and substance abuse resources, both fiscal and staffing, could be used to address monkeypox. I think... Yeah. That's worth a clap for sure.
(00:17:25):
But that is not only the way to answer this outbreak, it reminds us that HIV and STIs, syndemics, keep the system warm to be able to respond to future outbreaks. By really resourcing HIV and STD adequately, and mental health adequately, what happens is we create a resilient system that allows us to pivot faster than we did this time, because we have adequate resources. When we think about monkeypox, we have to think about monkeypox, but remember, it doesn't live alone, it's a part of syndemics. And what we can do to improve our STD, HIV, viral hepatitis response system in that syndemic model ends up being our way to address both monkeypox and future threats to the population. Thanks.
Daniel Griffin (00:18:11):
Thank you. Truly building up a platform to be ready to respond next time around.
Dr. Demetre Daskalakis (00:18:19):
Keeping the system warm.
Daniel Griffin (00:18:21):
Thank you.
Dr. Demetre Daskalakis (00:18:21):
I've been living in a hotel since I moved to DC, and I know from my frozen dinners that I have to have, it's easier to go from warm to hot than it is from frozen to hot. So HIV, STD and viral hep can keep the system warm for future responses.
Daniel Griffin (00:18:34):
That's a t-shirt someone. Okay, Thank you, [inaudible 00:18:39]. Thank you. Next up we'll have Dr. Maribel Acevedo to bring some greetings and begin the thinking as we think about our community response.
Dr. Maribel Acevedo (00:18:48):
Good evening. Thank you for having me. And thank you for the panel. Yes, we have the privilege to make an agile plan of action logistics in our clinics in Centro Ararat to implement pre-work, the work and the after work. And I'm meaning about the education and awareness for our community. Then the plan of action within our clinics without intervening so much with our schedule agenda, we implement that every person that ask about monkeypox, we stay with them, we analyze the situation, we educate about prevention, management, and treatment if needed. And also we run the vaccine clinics. We started with one day in a week and now we are vaccinating almost five days a week.
Daniel Griffin (00:20:01):
Thank you for that. Really appreciate it. Next up we'll have Dr. DeMarc Hickson speak to community response on the mainland.
Dr. DeMarc Hickson (00:20:10):
Thank you so much, Daniel. And thank you for the opportunity to be on the panel with our federal partners and also our community based partners here in Puerto Rico. Again, my name is DeMarc Hickson, I'm the executive director of Us Helping Us, People Into Living. We are well known for our community education and mobilization, service delivery, advocacy and community based research. And it seems like we're also becoming known for our culture Black People's Party as we held our second one yesterday during USCHA. We look forward to having you all to attend when USCHA is back in DC next year. And thank for the community response, in particular in DC and as it is for the nation, in particular for black gay men. We probably have a mixed feeling, but we became resilient because we are already addressing, carrying the heaviest burden of HIV. But also we know what COVID-19 did within the black community.
(00:21:23):
When we started to see the increasing numbers in monkeypox, we reacted quickly not only as us helping us but other organizations across the nation such as a bounding prosperity to address issues in terms of access. As much as we appreciate the federal response, especially in being able to reallocate funds, it became weeks and months later when initially we were told we could not use staff who was on HRSA dollars or SAMSA dollars for us. We're not funded currently by CDC, but to hear that that then further made us do what we needed to do as a community based organization, I want to make that distinction versus some that are community placed. We really had to advocate and push our local health departments for us to establish vaccination clinics that would be held at Us Helping Us.
(00:22:20):
Because one thing that I do not think that we learned very quickly with COVID, was even the what may seem as the simple registration system, and we don't think about the complications that that brings when, for example, in DC where those vaccine spots hit at one particular time in a day, that was normally around one o'clock, where many of the individuals and the residents in the communities that we serve have the luxury to be sitting at home or at their office to be trying to register for the very limited slots. Just as an example, in Washington DC, we know that by the time we got to 60 cases, the majority were amongst black and Hispanic and Latinx gay men. But over 80% of the vaccinations were among white gay men. We reacted very quickly and demanded that our health department move for us to be able to provide the vaccines.
(00:23:20):
It was for us hitting those initial roadblocks that we remain resilient, we didn't have all of the initial guidance, but even as an executive director who is FaceTiming one of our clients and being educated, had to tell our clients, "Hey, I've had chicken pox. I don't know what else to say. Let's put on some calamine lotion. Call me tomorrow, take some Tylenol and let's see on how this is."
(00:23:49):
We had a number of individuals who just self quarantined because they didn't want to be seen with what was suspected to be. And we didn't have all of the guidance. I know that there's stories around very similar where there was individuals that would go to well known prominent hospitals that were treated poorly, didn't know and sent away several times. I think, one thing that I would like to see as we do talk about the syndemics, is also to see how we can really be able to buttress community based organizations who are able to be a little more nimble and move quickly in response.
(00:24:25):
Because one thing that we did see in DC is that when we were able to get ahead of everything and at least educate folks, even if it was to stop sexual practices or hugging or whatever, because we've done that in COVID, so we've learned, we've kept the system warm in those things, that we now see one to two cases each week now in DC. We've only had around 500 cases, roughly 30,000 vaccines, and I think we've really done a great job to increase access, increase education and really figuring out how to do it when we always aren't in the know. I'd have more around our response.
Daniel Griffin (00:25:02):
Thank you so very much. I think you highlight the importance of the roles that community based organizations play, especially in immediate response, nimbleness, being able to take your community health workers and add an additional sentence not only on HIV and COVID but now on monkeypox. I think that's really, really important.
(00:25:28):
We are doing what we wanted to do. We still have more than 60 minutes in front for questions and answers, specifically from individuals within the room and hopefully from our live stream. We have a microphone in the middle of the walkway. Please, let's go ahead, begin the line up if you have questions, specifically from for any of our federal partners and our community response.
(00:25:58):
While you tee your questions up, I'll ask one or two. Let's begin with community. And I'll open it to either or. The first question would be, maybe just talk to us more about the lessons learned thus far? What can we use the next time the outbreak begins? Are there any lessons that you've picked up since monkeypox?
Dr. Maribel Acevedo (00:26:34):
One of the lesson learns that we identify is that we have to get together as quickly as possible and engage in meetings with the Department of Health. Not only that the Department of Health instruct us for the local protocol, but including us in tailoring, in the journey of this situation, this crisis, and identify other venues or other opportunities to maximize our services. We network with other local CBOs, we are serving in 20 sites and most of them, we have biweekly meetings to share our experience and to identify different opportunities to maximize the networking, the resources and the management for patients.
Daniel Griffin (00:27:48):
Thank you.
Dr. DeMarc Hickson (00:27:50):
Yeah. And I think for my experience and I would say the experience of others is, again, really building on our experiences with COVID where we had to really understand how we continue to provide these critical services to our patients and our clients. For Us Helping Us, we never stopped our services at the very beginning of COVID and I guess, before it was written on paper, we just went in to do what we needed to do to continue to provide folks with services. We started with appointments, look, we had our providers who are well versed in infectious disease transmission, so able to do protective gowns in the face mask and things. In preparation for the next time, we have a lot of the gowns and the mask and the face shield, so we just pulled him right out of our closet again, because we couldn't wait for funding again to come from wherever the funding was going to come.
(00:28:51):
I think that we stand prepared for a lot of those things for the next time, if there is the next time. And really being able to be nimble as I mentioned, I think I would, as a second piece again, continue to bring up to our federal partners about how to get dollars into non FQHC spaces. And I understand how it may be already a direct line of funding, but I think we should really explore how others who are not directly funded by the federal government, who are funded through our local and state health departments. Because I think there can still be a mechanism there. And I think as much as community based organizations beat up on our partners, because that's what we do with our brothers and sisters, is also to hold other parts of the federal government accountable. Some of the things that we don't always hear about is like with the company, I think it's called BARDA, who the CEO denied shipping the initial vaccines.
(00:29:52):
Now I have to admit, I even read up on the whole story because I've been busy in planning that party that was yesterday. But we always hold our health department officials accountable, but we also need to begin to hold other parts of the government accountable as well. Because again, if that is the company who was releasing the vaccines and they did it after the fact and not when we started to see these emergent cases, then we could have really been able to get ahead of this in many jurisdictions and not just those cities that are known for these things to pop up first. Yeah, I think I'll stop there.
Daniel Griffin (00:30:27):
Thank you. Thank you. We have a few people in line. Please introduce yourself and proceed with your Question.
Carlos Velez (00:30:33):
Hi, Carlos Velez, I'm an openly gay Puerto Rican. I moved from Atlanta in 2019 and I live by the airport here. But anyway, I got vaccinated at Puerto Rico Concra, which is a local CBO that's targeting members of the LGBT community. And I want to thank any of you who were involved in providing the funding, I did recognize some CDC surveillance questions.
(00:30:57):
But my comment is about a report that came out in the media three months ago, about two children who were infected through contact with an infected blanket. And to me that raised immediate alarms, because I lived through the early years of the AIDs epidemic where it created a lot of hysteria and people saying, "Well, we need to protect the general population from these evil homosexuals." And my question is, what is the media strategy? Because the media has been blamed for creating that hysteria about monkeypox that also drives people underground and they don't want to be vaccinated or don't want to come up for care. What is the media strategy to address that hysteria, to educate the media to say, "Please, don't do that because it's really not helping anybody?" Thanks.
Dr. Demetre Daskalakis (00:31:54):
I'll start, and then I'll pass it to John O. That's a great question. I'll say that the lessons learned from HIV were actually the lessons that were utilized from the perspective of public health messaging. My mantra has been, around monkeypox, that governmental public health and government needs to be the setting the example for how to communicate in a way to prevent stigma and to actively avoid it. From the very beginning of this outbreak, we really took a lesson from the HIV playbook, which was to focus on exposures and to talk frankly about risk. I think if you look at the history of the way that messaging has happened, it started by saying that this is the way that monkeypox can transmit. As we learned more about this outbreak and saw that it was really moving in a way quite differently than it would be expected, it became pretty clear that we said the way that this is most likely transmitted is through close intimate physical contact often related to sex.
(00:32:54):
There's other ways that it can be transmitted such as objects or respiratory through close prolonged contact. But it's really always important to of say clearly what the mechanism of transmission is without pinning it to a population. That I think is something that governmental public health in this outbreak did a really good job on. And I think definitely the goal is whenever we see such things in the media to be proactive about correcting it.
(00:33:25):
It's possible that someone gets monkeypox from contacting an object that has contacted someone who has had monkeypox lesions. But the reality of this outbreak is, it's not the most common way. I think that just being very clear about transmission and being very intentional to not fall into the trap of saying "This is a disease that's associated with the population," but rather "This is a population in which this virus is being experienced" is really important. And not just semantic but really creates a framework of communication that at least the good media will emulate. And then folks who aren't doing a good job, we need to be aggressive to correct.
(00:34:05):
I can speak from the White House perspective that we definitely make those phone calls if we see something expressed in a way that is damaging or potentially stigmatizing. And I can leave it to John O. to talk about the CDC side of that.
Dr. Jonathan Omerman (00:34:17):
I agree with everything Demetre said and I think in some ways we did better this time. Because of starting from the very beginning thinking about that perspective. I also wanted to highlight that science matters too in this case. Monkeypox had been transmitted previously through contact with pets and through respiratory contact and touching lesions. There the previous outbreaks of monkeypox virus and they're different clays, they seem not to all follow the same patterns, but led us to not be able to talk as much about how it's not transmitted as much as how it is. And I think very quickly the science allowed us to concentrate and say "This is very different," as Demetre had mentioned. And it gave us the power to be able to talk more about how it's not transmitted. And I will say that CDC is committed to continually look into the epidemiology to make sure that we do learn.
(00:35:18):
I will say one thing that, just because there are a few rare cases doesn't mean that's the major situation. We need to give information to people that tells them practical probability so that they can take care of themselves and actually cope with having the infection in a way that allows them to live their life as and be safe at the same time. I also wanted to just add to Daniel's question about lessons learned. There's one other that I think has been a major issue for the doctors D. on my right and left, which is, "Wait a second. Once again, we have an infectious disease outbreak that at its start was embedded in inequity." With HIV, we've been fighting against it and there have been substantial improvements in some of the inequities that started very quickly to embed themselves in HIV. But that's three decades later. STIs continue to have some issues.
(00:36:13):
COVID again, very strong racial and ethic inequities from the very beginning that we struggled to reverse and they are now reversed, but it's long into that epidemic. This happened again with monkeypox, but not everywhere. And I know that Demetre was very involved in working with at least one jurisdiction so that they started differently. And what I would like to see is the next time our community is affected by another outbreak or epidemic, we start in the beginning putting out services, making sure there's information and access so that we actually don't have those inequities start. Because in an unequal society, health inequities will naturally occur unless you fight against them from the very beginning.
Dr. Demetre Daskalakis (00:37:02):
Just one thing. Shout out to Fulton County, Atlanta, let's name the county and name the city that did a very specific effort and their data came out in, 70% of the vaccines... 68% were in the arms of black and brown people correlating closely to their outbreak, which is really exciting and important. That's a lesson to emulate. But I also wanted to add something that you made me think of, John O., which is that one of the lessons learned from this outbreak is also to be transparent about what you do and don't know. And that's something that I think went really right in this outbreak, but is one that is something that you carry with you. Here's the best guidance that we have for safer sex right now, that's going to change tomorrow because we're going to learn more by the science. Having the humility and also doing really good risk communication from the beginning to say, "Today we know this, it could be wrong tomorrow, but as soon as we know better we're going to tell you." That's not just an HIV lesson, that's a COVID lesson that I think we've all learned.
Daniel Griffin (00:38:03):
I think you said the magic word being Fulton County, is more people in line now. But next, please say your name and ask your question or comment.
Dr. Demetre Daskalakis (00:38:11):
To see Fulton County is in line.
Joseph Cherreby (00:38:14):
Hi, Joseph Cherreby. I am from Washington University in St. Louis. I also work at the St. Louis County Sexual Health Clinic. Couple of comments in a question. First and foremost, I appreciate all of the discussion about the diversion of funds and how we have had an increased access of funds to a certain extent within our clinics to help combat this current outbreak. However, that doesn't exist in a vacuum. We exist in the context in which a lot of our resources have been diverted because of COVID. A lot of our individuals have been diverted because of that. DI has been diverted because of that and we are already reeling from that. And local health departments as we know for years have been underfunded.
(00:39:01):
My question is, on the federal level, is there any plan to continue a sustained funding for local health departments in order to be able to combat outbreaks such as M-pox? But also I would like to comment on the fact that I come from Missouri, in which there's not a lot of funding of public health, I'm going to be completely honest here. But, especially with access to treatment and vaccine, a lot of our vaccine supply and treatment went through state health departments into local health departments. And that in and of itself serves as a barrier, especially with respect to TPOXX.
(00:39:38):
When us as infectious diseases providers who are actually seeing patients have to go through state health departments, state epidemiologists, let alone the paperwork, which you all did a great job at decreasing the paperwork. Thank you very much, we were very grateful. But at the same time, the fact that state health departments still have the ability to say, "Well, no. We have to wait for this," or "Oh, we have to wait for that." That in and of itself serves as a barrier as well. So how can we decrease the red tape? Especially with respect to access to treatment, which we know if we get access to earlier, is better. And we of course want equity with respect to access. We're very lucky, I work at an academic institution where of course we have the resources, but other places, especially rural places in my state and in my region don't have those resources. How can we decrease the red tape in order to increase access and increase equity?
Daniel Griffin (00:40:29):
Can I have John O. address the long term sustainable funding for outbreak [inaudible 00:40:37]?
Dr. Jonathan Omerman (00:40:38):
I can do that, and I'm sure everyone has comments about the state and local relationship and the ability to get resources to where they're needed. It's a really important issue. I was just going to say that we, who work in the federal government, can't speak in specifically about lobbying for more resources for our work. What we can say is that this monkeypox virus will be with us for a long time, and if we're going to reach our goals, we're going to need to be working on it for a long time. And as Demetre highlighted, the syndemics cause overlapping issues that we need to be able to address for the long run.
Dr. Demetre Daskalakis (00:41:24):
I'll say, there was a supplement that was set to Congress, $4.5 billion supplement to address monkeypox in the last CR. That was not accepted by Congress. When the opportunity arises again to apply for or to ask for resources for monkeypox, we will do that again from the White House again. But I also want to say that from the perspective of this keeping the system warm idea, I think that what your comments reveal is that we do have a system that is not optimized yet but could be better optimized if investments are made in the HIV, STD, viral hepatitis piece of the world. Because that is an easily mobilizable to be able to address the impact of something like monkeypox.
(00:42:17):
Regarding the vaccines and TPOXX going to the state, this is a really interesting one, because of the fact that both TPOXX and the vaccine live in the Strategic National Stockpile. Nobody had it under bingo card that an infection that requires vaccines and treatments from a Strategic National Stockpile would be an outbreak among MSM. The Strategic National Stockpile was actually never really optimized to do this. It used to be that the SNS, the Strategic National Stockpile, could ship vaccine to five locations in the state that they could then distribute differently. Based on this, a new contract was negotiated by Asper, who owns the SNS, and now 2,500 locations across the country can actually have vaccines shipped to them. What's happening is that one of the lessons learned from this is that SNS needs to be more flexible to be able to get vaccine and other counter measures like TPOXX closer to people. That's one thing.
(00:43:25):
The other part, really listening to what the problem was, CDC doing fabulous work in terms of reducing the paperwork for the EAIND that was required. The other thing that we did from the White House with the support of Asper, that owns the SNS, is we prepositioned TPOXX 50,000 doses out in the world, so there wasn't the same issue of trying to get it shipped from the SNS person by person. This new contract will also allow more flexibility.
(00:43:57):
What's in the future? I don't know. Will the drug be commercialized? It depends on what the studies show. Will the vaccine be commercialized? That's not something that's going to happen for a while. I think that really trying to build into flexibility in the SNS to be able to get vaccine and drug closer to people faster, is what we've got today. But I think we hear you for sure and that's really important feedback in terms of what we can have tomorrow if either of these agents become commercialized. Thank you for your great comments and really thoughtful experience and thanks for your service out in the world doing vaccine and TPOXX.
Daniel Griffin (00:44:32):
Thank you so very much. Next up.
Stephan (00:44:35):
Good evening. My name is Stephan, I live in Fulton County. I just wanted to give you my experience working for myself and my friends trying to get the MPV vaccine. Through June and July, we were trying to get information. The Georgia State Department public health website was very frustrating because all they would give us is press releases. The Fulton County Health Department was just as frustrating, no live person, no real information. Just the same press release saying "Things are coming." I was hearing from friends at DC and New York, "Oh, yeah. We're getting scheduled, we're getting our first shots." I don't think in Fulton County, we should be getting our shots. Finally at the beginning of August, DeKalb County next door got some, but the appointments were gone in a minute. Finally, me and more of my friends, we all figured out Henry County, which is an hour and a half away by car if you're lucky enough to have a car, you could get appointments from.
(00:45:29):
So we were all, I was telling people through the networks that I work with, "Go to the Henry County website." They were great. Finally, Fulton County got together. They did a wonderful job of black pride at the end of August. But the whole summer was so frustrating. And again, this is just a story to tell you all, I know y'all know it, but hopefully things can get better, especially in states where it just doesn't make no sense that if there's 60 counties, there's 60 different ways to get something, and I'm just very frustrated. But thank you very much.
Daniel Griffin (00:46:06):
Thank you so very much.
Dr. Demetre Daskalakis (00:46:07):
Thank you.
Daniel Griffin (00:46:08):
Next up please.
Justin Smith (00:46:11):
Hi, I'm Justin Smith. I am at Positive Impact Health Centers in Atlanta, which is in Fulton County. I have two questions. The first question is concerning the JYNNEOS vaccine. We know that we went to the intradermal vaccination strategy, it really is a way to increase the supply, and now it seems like we're at a place where the supply isn't really the issue, it's more of the demand piece. For your consideration, would you all be open to considering a future in which moving back to the original dosing schedule is something that you would recommend given that, again, we're not sort in that intense scarcity period anymore? And also, given a lot of the concerns that have come up with the intradermal injection in terms of more long term marks on the arm and things like that, I know that we've had some guidance around where you could actually administer that, have addressed some of that, but that's still a concern we hear a lot in community. Just was wondering what you're thinking about that is.
(00:47:15):
And then the second question is really around testing. I think, we've done a lot really to scale up our ability to deliver vaccinations. And I think that that is largely working a lot better than it did. But I still feel like the testing piece seems to be a place where we have a lot to use your words lesions. What are the thoughts around how we can improve that part of the system? Because that's still places where people are calling to be like "Where, should I get tested? I went to two doctors and they didn't know how to do it." I think there's also a clinical education component where I know friends that have gotten tested and the doctor swabbed one lesion, which isn't right. Just, how are we trying to fix that part of the texting access part of our system? Thank you.
Dr. Jonathan Omerman (00:48:03):
Yeah, great. Hi. Thanks Justin. It has been a changing environment for the vaccine. As you said, there's a switch from a time of scarcity to a time of relatively ample supply. And in part of that was looking at the science, and it was originally devised and showing that intradermal vaccination appeared to produce the same or better immunity than subcutaneous and you only needed about a fifth the dose. That allowed us to movement. Your point is important, which is that it can cause a little bit more pain, it sometimes has lasting either discoloration of the skin or for people who develop kilos, there's theoretical issues with more kilo formation, although it hasn't been documented. But the idea is that people want these alternative sites than just having something that could potentially increase stigma as Demetre had mentioned earlier. So a variety of things are happening.
(00:49:00):
One is that we did put out guidance that said that you can put the vaccination site atomically in a different place like subscapular or below the shoulder blade. It actually has fewer nerve endings too, so it might actually cause less discomfort, but also it is out of sight from where people might see.
(00:49:22):
The other is that we are actively involved in evaluating the effectiveness of the vaccine. Our first initial analysis, again, using early preliminary methods showed fairly strong effectiveness. And we are now waiting to collect enough data to show whether there's the equivalent findings for intradermal versus subcutaneous administration. There's always an option for subcutaneous administration for people who prefer it or for people where it's contraindicated to have intradermal. I think that is already there, but finding that the science would indicate that intradermal vaccination was as effective as your subcu would actually really help people because of this, as you said, theoretical concern that people have, including clinicians.
Dr. Demetre Daskalakis (00:50:21):
I'll just add one thing, which is also there's an NIH study that's happening that actually not only looks at subcutaneous versus intradermal, but also at intradermal at one half the dose. Asking a couple of questions, which is, if you were to even go lower on the dose, do you have equivalent immune responses and could you potentially have fewer of the side effects? I think, everything is always on the table. I can tell you that one of the really important innovations that happened based on community feedback is that on the HHS landing page for monkeypox, there's a box that you can click and it shows you what the vaccine strategy according to supply looks like. And you can actually track what we think we're going to get versus what we actually have. Our current estimates of what we need is based on an intradermal dosing strategy. And that's based at... Actually we based it at three doses per vial to be a bit more sassy than the four doses per vial that most people can get out of the vial to be a bit more conservative.
(00:51:28):
I think that though it's relative non scarcity, there still is a level of scarcity in terms of what we have to do. And at least at first blush, the effectiveness of the vaccine A, looks good for dose one and dose two is the one where you get the bigger punch. And then also just, again, I don't know the vaccine performance data yet because it takes more time, but definitely the fact that the curve is cascading down after we've switched to intradermal is starting to feel pretty good with a rough first guess of what it looks like. Your testing question, I'd love to get a sense more of, is it about the types of tests or about access to testing? Can you elaborate a bit more so we can answer that one?
Justin Smith (00:52:08):
Sure. I think it may be more of a local issue where people just don't really know where to go. And when they are seeking testing, they're told that the clinical facility doesn't know how to do it. I feel like there's a lot of confusion in the community. Because I think it's very clear like, "If you need to get a vaccine, this is where you go." It seems to be, for community that it's less clear like "If I need to go to monkeypox test, where can I go?" And so it's really both a communication issue but also thinking about how do you make sure that the clinical team is actually able to do the test appropriately? Trying to solve for both of those things.
Dr. Demetre Daskalakis (00:52:45):
I'll just be controversial and say, one really interesting way to solve that is to develop a multiplex test so it's embedded in testing for other infections such as either gonorrhea, chlamydia, depending on if we ever get to the place of asymptomatic screening or from lesion based screening, something that tests for syphilis and HSV, something that we should definitely advocate for and keep asking for the resources to get to the next level. With that said, it sounds that this is more of a "How can we communicate better to providers?" And that's definitely one for us to take back and have some conversations about, so how we can do better so providers know that this isn't a scary test to order, that is an important test and this is how you do it, so that really it should be readily accessible.
(00:53:27):
From the access perspective, CDC moved at a really fast speed to go from "This is a test that lives in the laboratory resource network in public health labs," something that lives there in response to bioterrorism, into something that's commercialized. It seems as if the issue isn't so much "I can't order the test," more of "We need to communicate better to providers about how to order it and what that really means in terms of what samples I get, what specimens I get," and that it's something that should be embedded as part of their differential diagnosis. We're going to have to take that one as a note and take it back to figure out how we can do better. But that feedback is really important. Thank you. Thank you Justin.
Dr. DeMarc Hickson (00:54:11):
And I think, if I can just add one more part to Dr. Smith's comment and question about the subcutaneous versus intradermal. I think from community, it didn't come off as that, it came off because we started as this, as you mentioned Dr. Omerman, already in inequity. And then when the intradermals came, especially for black folks, it was, "Why am I giving this water down version? We had a lot of our white counterparts, white gay men who had already gotten the full doses and now as black and brown or black and Latinx and Hispanic gay men were getting out given this intradermal." I think that's one very critical piece to say that as we look at and possibly prepare for the next outbreak of whatever condition, that we do really start off in the place of equity and access.
(00:55:05):
And then I think just one last point that I wanted to make in particular around the sustainability... No, back to the testing. Is possibly classifying monkeypox as a sexually transmitted infection and embedding it already in our integrated HIV and STD screenings? Because we've been doing this especially as community based organizations, I know since I think Us Helping Us received their first testing grant in 96. We are a place to go for testing, and I know there were several organizations and I know as a black gay man who's living in DC, knowing Daniel, talking to him about our experiences to get ahead of it in Fulton County, very similar with Kirk Meyers in Dallas, Texas who embedded the vaccine within testing, and I believe were able to identify almost 10 individuals who are unknowingly living with HIV. Not to continue to segregate tests as we often do in our population of people and really think about how we create these integrated strategies for things now and to come.
Daniel Griffin (00:56:13):
I see we have two folks standing in line, but before we go back to the questions, I think you gave me a great pivot, especially thinking about people living with HIV. And being mindful, I think it's 40% of those folks impacted by monkeypox are also living with HIV. I wonder, for Dr. Susan, what are one of the ways that we can use Monkeypox to either bring folks who have fallen out of care? Because, again, I live in Fulton County, so we have 19,000 people out of care in our EMA. What are those ways that we can use this outbreak to begin a new conversation of what does healthy medical care look like for those people?
Dr. Susan Robilotto (00:57:05):
Thank you for that question. That's a great question. I think, through our Ryan White programs we have trusted people in the community, and I think really having them have a voice in this and get the word out and engage the population that they're dealing with, and from that grows more community trust and messaging. I think that that is one way that we can do that. But I think I'd like to sit and think about that a little bit longer too, because I think that there could be some really innovative things that come out of this. Usually these situations do bring innovation with them. And I think that the Ryan White program, I'm a bit partial as you can tell, but I think the Ryan White program, their providers really are pushing the envelope for public health in general.
Dr. Maribel Acevedo (00:58:06):
Yes, I have to go back to the questions regarding the access to evaluate patients. I think that one of the things that we have to have in mind is that we have to be empathize with patients looking for information. And we have to take time to give them the orientation that they need, because sometimes they go to different places looking for the information and they didn't get it. We have to be empathize, we have to have compassion because it's uncertainly. They lack of trust or mistrust among the healthcare professional, because sometimes they don't get the answers that they are looking for. We have to take the time to listen, to accompany the patients and to explain that this is a condition that can be acquired for contact, not sexually transmitted, not because of sexual orientation or gender identity.
Daniel Griffin (00:59:24):
Thank you for that. Empathy is really, really important. Please.
Julia Zigman (00:59:30):
Hi. Thank you so much for being here. My name is Julia Zigman and I'm a senior program analyst for HIV at NACCHO. I want to say, I have a question about TPOXX, but first a comment. I really appreciated what you're sharing about the need for expanded funding for HIV and STI staff as well as the opportunities that come through Ryan White to build on that community of trusted providers gentle acknowledgement though that while we have to expand our funding for HIV and STI staff. They are burned out, they're already always being asked to do more with less and they've been deployed for COVID. I have the privilege of working with local health departments, HIV and STI staff across the country and as you said, they're really awesome. They're good at working with... Well, apart of in our history, however, they know what they need to do to talk about these infectious diseases, but we keep adding things to their plates.
(01:00:28):
While we need to expand the funding that already exists, we also need to look at new innovative structures of funding, such as a national PrEP program that expands at... Yep. Expands a network of providers that don't just look like medical clinics but can look like Us Helping Us and others that are... They're demedicalized and they look like in run by people that are trusted. Helping expand that type funding as well as leveraging what already exists. Also, we appreciate the funding flexibilities that have been created. I think we had 300 health departments on a webinar trying to learn about the different ways they can use their funding. That's been helpful and we need more. But you know that.
(01:01:10):
The question is completely different vein, but it's about TPOXX and I'm wondering if there's been any conversation at a federal level about prioritizing individuals who use drugs, especially those who inject drugs or use opioid drugs, in prioritizing them for access to TPOXX. Given FDA's guidance in the last few weeks about trying to limit the amount of TPOXX we use to prevent antimicrobial resistance, there's not that much criteria on who gets it besides severe cases. But considering many individuals who use drugs may not be able to access other forms of pain relief, and the massive overlap in this community and those in our people living with HIV or those at hide and risk for it is their considerations for helping them get access to TPOXX or other treatments that isn't just opioid. Thanks.
Dr. Demetre Daskalakis (01:01:57):
I can try. First of all, thank you for all of your comments. Really important. I think, everybody, I just want us to start getting the mantra of HIV and STI and viral hepatitis keeps the system warm, because we've shown it once, twice. Much is built on COVID. I just have to go on this tangent.
(01:02:18):
Let's talk about the research. Who's doing the research in the JYNNEOS vaccine? That would be the HIV trials network. Who's doing the research in TPOXX? That's the AIDS Clinical trials group. The system is kept warm by HIV, STI, and the viral hepatitis infrastructure. In terms of TPOXX, I think we're going to have to take that one back and have a conversation just the idea of the overlap of opioid use and the issue around pain control. One of the challenging issues is that anecdotally people say that the TPOXX is helping them with pain and if they do have the severe pain, if they have rectal symptoms, that technically according to the guidance means that they could qualify for TPOXX. And if they have HIV, even if they have mild symptoms, that alone will qualify them for TPOXX, because of the circumstance of the underlying condition. With that said, that's a great area for us to discuss in terms of maybe even clearer guidance around pain management, especially in individuals who may have opioid related issues. We'll definitely take that one back. Yeah, thank you. That's a great comment. We really appreciate it.
Daniel Griffin (01:03:24):
Thank you. Please.
Joshua O'Neal (01:03:26):
Hi, my name is Joshua O'Neal. I use he/him pronouns and I'm the director of the Sexual Health Program at Fulton County. Sorry everyone for Fulton County conversations. Before I get started, I saw some confusion in the room around the terms and subcu. Just for folks that may not know, subcu is the back of the arm. If you get an injection almost like a flu... You can correct me because I'm not a medical provider. A flu shot in the back of the arm versus intradermal is more like a TB reading underneath your skin. We can use language that people understand. Next, these gatherings would not exist without advocacy and especially activism, so I'm here having a conversation with two people, one from the CDC and one from the White House. Thank you for having me. And I want to point out, and I guess I should start by taking some responsibility for Stefan's comment and experience earlier in Fulton County, because there's a lot of frustrations.
(01:04:19):
We put 800 slots up and within four minutes they were gone. It was very tricky. We responded in a lot of ways and I would love to share all of those ways because I think we learned a lot of lessons and I think that we overcame that. But my first comment that I wanted to say, ironically, is that when this first started in the first several weeks of monkeypox, and you can correct me if I'm wrong, but the site that I was using as a resource was this JYNNEOS distribution website that showed how many doses were allocated to certain districts throughout the United States. Georgia was the fifth highest state in terms of the amounts of infections that we had with one of the lowest distribution rates, allocation rates in the United States. We had 3,200 at least three or four weeks into this epidemic or this outbreak.
(01:05:10):
Whereas some spaces like New York and California had between 30 and 50,000 doses allocated to them. And that was states throughout the United States, I can count at least seven, that had at least half if not a quarter of the infections that we had, but had twice as many doses allocated to them. I think it's your responsibility in your spaces to ensure that the places that are the hardest hit are the ones that get the attention and the resources initially and immediately. I just want you to consider that when these things come up again in terms of, it shouldn't have to be through certain people who order vaccines however the distribution pipeline works in states to be the only reason or way that they get access to these vaccines. It takes people at a national federal level who have more agency over these situations to be able to ensure that these places get it, because Fulton County is still behind in terms of the amount of vaccines that we're getting. And that's just an advocacy or activist comment.
(01:06:20):
The other thing that I want to request from you all is that I think we tend to wait for guidance from folks that are really top down. And I think that that's really problematic because what happens is the guidance comes from folks that are often disconnected from what's happening on the ground where we're... We've done over 8,000, almost 10,000 vaccines in Fulton County currently, and I'm already seeing issues like lack of access to treatment. So all of our peers are at home struggling in pain and don't have access to treatment. And we as a community need to figure out how to get information to them about home care, around whether it's antihistamines, whether it's calamine lotions, whether it's Sitz baths, the ways in which we can ensure that they have some tools or information to minimize the impact of monkeypox on them and on our community.
(01:07:05):
And unfortunately it's not medical and we can't give medical advice, so the State Department of Health isn't putting it out, the CDC isn't putting it out. But we need to ensure that what we're coming up with and the information we're giving to our communities has a megaphone. And the ways in which the tools you have, whether it's the websites, whether it's the guidance, whatever, so that you can magnify this information. And another example of that is hyperpigmentation. We're talking about this spot that's left through this intradermal access, and we have found in Fulton County that it's actually deterring people from coming back to get their second shot. And there wasn't really any information around other places to get the vaccine, or we're also not having conversations, again, about home care. What are some ways in which you can minimize this appearance of this spot, which could be keeping it out of the sun, which could be certain vitamin A oils.
(01:07:57):
We're talking to people at Emory to figure out, who are clinicians, what are the solutions to making sure that we can get this information to community as quickly as possible. Great that we vaccinated at least 70% of black and brown people, but if 70% of black and brown people were coming through and we made sure that they had access but now has this issue that's coming up with that's unaddressed, how do we ensure that we're responding accordingly so that they know that we're here for it and we're giving them all the information that we have as transparently as possible? And I would love to make sure that that gets also magnified.
(01:08:33):
That is my request to you. Instead of waiting for this top down approach, I'd really like to figure out a pipeline or a way for us on the ground to get information to you so that you can respond to what we're seeing on the ground. Thank you.
Dr. Demetre Daskalakis (01:08:47):
A couple of things. First of all, thank you. First, about the vaccine allocation, I think that in real time things changed. At the beginning the vaccine allocation was based on a ratio of actual cases versus projected individuals who could be at risk for monkeypox. The number of people living with HIV in the jurisdiction along with individuals who would be a PrEP candidate or people who had indications for PrEP, that's flipped. It was 25, 75% cases to at risk population, that then flipped to 50/50. And that's when I think at least in Atlanta and in Georgia you saw a change in vaccine allocation and the cases powered up beyond the population at risk. Having that nimble ability to change is why vaccine allocation, again, started to mirror more what you were seeing on the ground. Because it was originally based on the risk population, because we wanted to make sure that there was a baseline vaccine that was going to places that had individuals at risk, even if they didn't have cases.
(01:09:56):
What's important is that we listened and made a flip really based on the feedback, so that feedback was really important. And it's good to know that lots of jurisdictions haven't pulled down their allocation for phase four yet, which means that we still have plenty of vaccine based on demand. Because really a lot of the rules are actually superficial. If there's a jurisdiction that needs vaccine, all they have to do is give a call to Asper and Asper works with them to get vaccine, but we're not hearing a really high demand for additional vaccine currently. But, totally take the note, your Fulton County guide to hyperpigmentation is great and there is a bidirectional way which is like we look and if you send it to us, we send it up. I think it's being looked at in terms of guidance that's come from the ground, because your experience is so important and your guidance is so important. I think everyone is looking at it to see if there's a way to amplify.
(01:10:49):
Pain management, there was guidance about pain management that came out of CDC really, really early on because of the fact that we were hearing that so many providers were undertreating pain because there was a disconnect between what the lesions looked like and what people complained about. That went out as well. TPOXX is still investigational, so we don't really know what its effectiveness is. If you actually look at the MMWR that was released the first 500 or so cases that were published, it looks like it's safe. That TPOXX study that's happening right now, which is the STOMP trial I know and there's lots of sites open in the country, that ends up being super important in terms of actually learning what the real world effectiveness of TPOXX is to humans.
(01:11:35):
In the meantime though, the EIAND exists and also the guidance for pain relief is also there since it's so important. I think we got a good note about thinking about maybe nuancing it more for folks who are opioid users. I think that your feedback is really important and keeping it coming because we tend to respond to it and try to fix where we can to be able to leverage the response, so it actually addresses the changing needs on the ground. Thank you so much and thanks for your work in Fulton County. Yeah, of course.
Daniel Griffin (01:12:05):
Thank you so very much. Please.
Josue J. R. Jimenez (01:12:08):
Hi, my name is Josue J. R. Jimenez. I'm from ASPIRA de Puerto Rico and my principal language is Spanish and my question is, [foreign language 01:12:20].
Speaker 18 (01:12:50):
We're talking about monkeypox, but I'm wondering, I got the news today that in Puerto Rico access to PrEP is only for 1000 people when it should be at least 25,000 people. So I would like to know how we can expand access to PrEP so that we can end HIV?
Daniel Griffin (01:13:07):
I think that's a great pivot. Any of the federal first and then we'll jump to the community?
Dr. Susan Robilotto (01:13:14):
Could you repeat it?
Daniel Griffin (01:13:19):
Yes. It was a question specifically sitting on the intersection of monkeypox and PrEP, the fact that there is roughly, I think it was mentioned roughly 1000 individuals using PrEP when there needs to be more than 25,000. So how do we really tie that conversation of ending HIV in? I would say monkeypox?
Dr. Jonathan Omerman (01:13:42):
We're on your team. All of us work with HIV, many for our entire professional careers because we care so much about it and that expertise is what was pulled in for monkeypox. But we do think that some of the work that's being done for monkeypox can build the infrastructure, and we can learn from some of the science and programmatic work to actually do a better job with sexually transmitted infections and HIV and viral hepatitis in the long run, maybe even in the short run. We are very conscious of thinking about how they interact with each other in a positive way programmatically.
(01:14:31):
I can't speak to the current situation with what you described as this massive gap between the number of people who would benefit from PrEP and the number of people who are currently getting it. But that's the type of information that we really appreciate hearing, and CDC can look into that more carefully and work with the health department to determine what we can do better. PrEP should be available for people, many more than what you're saying, and it's a very important HIV prevention tool that we've spent a long time trying to get to the people who need it. We will look into it and thank you for the comment,
Dr. Maribel Acevedo (01:15:15):
My humble answer. We need to take out the cumbersome documentation calls times back and forward with the health plans. We know that every health plan has to cover at least one PrEP. I know that Truvada generic is the cheapest one and not all the patients comply with the criteria to be on Truvada. And we have to make justifications calls. A team that work around us to work to access the medication for the patient. Is very cumbersome frustration, we have frustration. But we have the heart and the team members that fight behind our patients. I think that the key player or gatekeepers that we have right now are the health plans, and we know that we have laws that have to cover them.
Daniel Griffin (01:16:39):
Coordinated more across health plans to ensure access is there. I really, really think that's important. Please.
Cora Trelles Cartagena (01:16:46):
Hello, Cora Trelles Cartagena. Pronouns: she, and I'm with NMAC. And my question for all of you is, do you know or have any initiatives to include the undocumented communities in your efforts for vaccine awareness treatment and such? And if not, this is a request to include undocumented communities.
Daniel Griffin (01:17:01):
Can you repeat the question, Cora?
Cora Trelles Cartagena (01:17:01):
Yes. If you know of any initiatives or if you have any initiatives to include the undocumented communities in a vaccine awareness, in treatment and such? Because, we mentioned mistrust, fear, and oftentimes undocumented communities do not have information and there's a lot of hesitancy.
Dr. Demetre Daskalakis (01:17:33):
Great. Thank you for the comment. I'll start. I think one of the imperfect strategies is really the work that we've been doing with HRSA-BIBIC, so the Bureau of Primary Healthcare that looks at federally qualified community health centers that allows access for people regardless of their insurance status or their immigration status. I think you already heard that vaccine supply went to Ryan White, but it also went to the community health centers as well. With that said, in the supplement request to Congress, there was an ask of $1.2 billion to further support Ryan White as well as the federal qualified health centers to really address this issue, really an area of ongoing important advocacy to make sure that there are resources that go in this direction.
(01:18:23):
Vaccine supply going to these places is great, but again, I think we've heard from many folks how the system is so stressed by so many things that are happening. New resources are necessary to be able to support the health of individuals who may not be insured adequately, underinsured or unwilling to go to some of the other venues where people may seek healthcare because of worry, because of their immigration Status. it is both an adequate answer and then a note for us to take back to think if we can do anything that's better.
Cora Trelles Cartagena (01:18:55):
Thank you. I just wanted to add that I'm aware that there is eligibility, but oftentimes the message to community is not loud, it's not clear that you do not need an immigration status to have access to vaccines or that there's not going to be a consequence immigration wise if you provide your name, your phone number, your personal information. Thank you.
Dr. Demetre Daskalakis (01:19:18):
No, thank you.
Daniel Griffin (01:19:19):
Thank you. Please.
Warren Gill (01:19:21):
Hi, good evening, Warren Gill and I'm with AID United, and we just worked on a vaccine hesitancy project earlier this year around COVID and people living with and vulnerable to HIV. You talked earlier about a supply and demand issue or where demand is not as high right now. How much of that is vaccine hesitancy broadly? How much of it is people not knowing that they can access it? Where are the problems with demand?
Dr. Demetre Daskalakis (01:20:02):
Great question.
Warren Gill (01:20:02):
And also, I'm sorry, do you have any suggestions for those of us that work in this area to help increase demand?
Daniel Griffin (01:20:09):
Great question. So the line of vaccine hesitancy, vaccine access and any resources.
Dr. Jonathan Omerman (01:20:18):
I could start, but I actually think the community organizations would have a lot of great information about what's going on with a lot of the clients. I think it's all of the above warn. One is that vaccine confidence took a hit with the politicization of vaccination and healthcare during COVID. And then on top of that, there's the potential for stigma and discrimination, there's the initial experience where there was a limited supply, which I think left people with a situation that they might have to try very hard to access the vaccine. And truly, as was mentioned earlier, some providers don't have access to it or not as [inaudible 01:21:10] if you go to your normal clinic, SCI clinic or even a community based organization, they may not know exactly where to get access to the vaccine. I will say though, that's what we deal with in our day to day lives. If you work in HIV or STI, this is what we do.
(01:21:24):
We know how to both have campaigns that support the information, that meet people where they are, we have influencers that are trusted by the community who can find out what's going on and share helpful tips. We can change the policies and structures of the systems that essentially don't pull people in. And ultimately what I'd like to do is have a situation where instead of us asking people to think about getting vaccinated, we actually have a system in place that brings the vaccine to people. And we have a lot of programs now that are increasingly doing vaccinations at pride events and other situations and venues where people are going.
(01:22:02):
But that also has to happen at the clinic. You don't have to ask your doctor for a monkeypox vaccine, that should be something that is automatically offered to you because of the information that they already know about you. And although that's an ultimate goal, I think we're on the path to get there. But once you get beyond the early adopters, the people who really care a lot, and in the beginning of the outbreak when people are afraid, it really pulls in traditional public health and community to be able to respond in the ways that we've been doing for many other things.
Daniel Griffin (01:22:39):
Thank you. Did you want to say anything from the community?
Dr. DeMarc Hickson (01:22:42):
Yeah. I would to say, from the experiences that we've seen, the strain that the supply gave, already gave folks an ill feeling. I think that, again, building on the lessons from COVID, folks took those lessons and really self quarantined, if you will, changed behaviors as I mentioned before. And I think for those who received their first dose, I think they just said, "Okay, I got enough coverage." I think I've seen enough on social media, et cetera, that I'm aware to see the things to look for. We also talk about, we have sex positive framework at Us Helping Us and we talk about "Do you have sex with the light on or the light off?" And if you have it with the lights off, you aren't able to explore and see what you're getting into if you will.
(01:23:39):
Helping folks to really understand these different pieces. And I think with that, people have really started to not demand the monkeypox much more. We have a second office in Prince George's County, which is oftentimes known as Ward 9 of DC, and we actually had to cancel our last clinic because there were only eight people who registered. And we send this out massively work with the health department to broadcast it. I've heard we have a better response for one that we have on this Wednesday.
(01:24:12):
I think that's just a part of it that I think people had just gotten tired. Because again, we're just trying to come out of COVID and all these different things. And I think just as one last note where we've been talking about sustainability and how do we make sure that we have this equitable system, I would encourage everyone as we are looking for November, that we are really taking our advocacy to the ballot box, where we want to have a Congress that does represent those who have our best interests. Not only just on the House and on the Senate side, but also as you have jurisdictions such as DC who is fighting for statehood and other jurisdictions such as Puerto Rico who vote, where their voices are not counted, that we also begin to look at our advocacy in those efforts as well. Because, as the model with DC is taxation without representation. Thank you.
Daniel Griffin (01:25:09):
Thank you.
Dr. Maribel Acevedo (01:25:12):
I would like to add that hesitancy can be overcome with education, massive education among the island. Here in Puerto Rico, we have a very good communication from the Department of Health, from every CBO, including Centro Ararat that has a very active communication presence regarding the topic. And also to be available to answer the questions, to take the time for their concerns. And to talk with every employee that has a concern about it, because the employee that is educated will educate others, including their family. It's like a wave. That's our highlight for this topic.
Daniel Griffin (01:26:06):
Thank you so very much. Believe it or not, we have 34 seconds to go. I think this timed out excellently. We actually will have our federal partners back with us tomorrow for our closing plenary, which I am certain you all will be present with us. Right? I didn't hear that. Okay. And I also could see in your eyes that "Well, I really, really want to see some slides from these folks," so believe it or not, we have slides for you tomorrow.
(01:26:44):
Also, please, please come back, bring a friend with you for tomorrow's discussion. Any last minute things that you just have to get out that will not wait until tomorrow morning?
Dr. Demetre Daskalakis (01:27:00):
Just thank you.
Daniel Griffin (01:27:02):
Give yourself a ride of applause.
Dr. Susan Robilotto (01:27:03):
Come back tomorrow.
Daniel Griffin (01:27:08):
Again, we really, really, really want to say thank you for participating tonight and we look forward to finishing our conversation tomorrow during our closing plenary. You all have a safe night.