IMPOWR-YOU tk Community Engaged Research: Exploring Research Possibilities in OUD and Chronic Pain using Xylazine as a Case Study

Transcript

• 00:02Right. Luis is here. We
• 00:04are ready to roll.
• 00:07I'm so I'm so sorry.
• 00:08Can you hear me now?
• 00:10I can. Welcome.
• 00:11So much for your patience.
• 00:14Thank you so much.
• 00:16Okay. Why don't we go
• 00:17ahead and get started?
• 00:19Very excited to,
• 00:22restart our Empower You,
• 00:25training series focused on,
• 00:27early stage investigators or investigators
• 00:30who are moving over to
• 00:31the fields of opioid use
• 00:32disorder and,
• 00:34chronic pain.
• 00:36We're lucky today to have,
• 00:38doctor Kimberly Su, who's an
• 00:41assistant professor
• 00:42here at Yale,
• 00:45and,
• 00:47doc and Louise Vincent,
• 00:49who is,
• 00:51has a master's in public
• 00:52health
• 00:53and,
• 00:55works as the, the,
• 00:57executive director of the North
• 00:59Carolina Survivors Union
• 01:01and a member of the
• 01:02National Survivors
• 01:03Union leadership team.
• 01:06And the topic for today's
• 01:08talk will be integrative management
• 01:10of chronic pain and opioid
• 01:12use disorder
• 01:13for whole recovery
• 01:15in organizations
• 01:16united research center.
• 01:20Community engaged research, exploring research
• 01:22possibilities
• 01:23in opioid use disorder and
• 01:25chronic pain using Xylazine as
• 01:27a case study.
• 01:28Thank you, doctor Hsu.
• 01:31Thank you so much, David.
• 01:32And thanks to the Empower
• 01:34You group.
• 01:37I am
• 01:39going to
• 01:42get started,
• 01:44and Louise is here. And
• 01:46we hope okay. I'm
• 01:49not sure. Can is everyone
• 01:50okay? I can start if
• 01:52you want me to. It's
• 01:53up to you. I just
• 01:54didn't know. I just didn't
• 01:56know. I was just confused.
• 01:58Why don't
• 02:00I, kick off the
• 02:02slides, and then I'll I'll
• 02:03let you get in Kick
• 02:04it over? Okay. That's great.
• 02:06That are that are for
• 02:07that are your that are
• 02:08that are your domain of
• 02:10expertise.
• 02:11Got you. I'm feeling good
• 02:12now. It just took me
• 02:13a second to sit here.
• 02:14It's combobulated.
• 02:15You doing? Alright. Yeah. So
• 02:17the background I hope that
• 02:18this
• 02:19talk is,
• 02:22you know, real conversation starter
• 02:24for a lot of us.
• 02:26All of us are still
• 02:27learning,
• 02:28as we as we,
• 02:30as we seek to do
• 02:32more community engaged research. And
• 02:35so,
• 02:36Louise and I have been
• 02:37in conversation
• 02:38about these issues for many
• 02:39years,
• 02:41and, you know, I I
• 02:42so value her expertise,
• 02:45as sort of as a,
• 02:47collaborator
• 02:48and instigator
• 02:49of
• 02:50of activism and also research.
• 02:52So,
• 02:54we'll get started.
• 02:56Here are some learning objectives.
• 02:58So, you know, we'll review
• 03:00the principles of community engaged
• 03:01research. But more importantly, I
• 03:03think
• 03:04thinking through this,
• 03:06in regards to substance use
• 03:07and or chronic pain,
• 03:09based on the expertise of
• 03:10people with lived and living
• 03:12experience,
• 03:13lived and living experience of
• 03:14chronic pain and substance use.
• 03:17So, a couple definitions
• 03:19of community engaged,
• 03:21research. So one from Yale,
• 03:23our our home,
• 03:25our home center, the ERIC
• 03:27Center, the Equity Research and
• 03:28Innovation Center. So community engaged
• 03:31research
• 03:32is a process that incorporates
• 03:34input from people whom the
• 03:36research outcomes will impact and
• 03:38involve such people or groups
• 03:39as equal partners throughout the
• 03:40research process.
• 03:42So this involvement may include
• 03:44co designing research questions to
• 03:46solve problems, making decisions, influencing
• 03:48policies,
• 03:49and creating programs and interventions
• 03:52that might affect their own
• 03:53lives.
• 03:55So,
• 03:56you know, there's also one
• 03:57that we put up from,
• 03:58the CDC. So community engagement
• 04:01often involves partnerships and coalitions
• 04:03that help mobilize resources
• 04:05and influence systems,
• 04:06change relationships among partners, and
• 04:08serve as catalyst for changing
• 04:10policies, programs, and practices.
• 04:16So,
• 04:17within
• 04:18the the spectrum of community
• 04:21engaged research is CBPR,
• 04:23and Louise
• 04:25has written a paper where,
• 04:26you know, she's criticized this
• 04:27approach, so we'll go into
• 04:29that.
• 04:30But, you know, the particular
• 04:31idea,
• 04:32you know, of CBPR is
• 04:34that there's equitable partnerships,
• 04:38you know, this collaborative design,
• 04:41that people of all,
• 04:44can participate on the issue,
• 04:46you know, throughout the entire
• 04:48process
• 04:49in all aspects of the
• 04:50research.
• 04:51However, you know,
• 04:53we all should read Louise's
• 04:55paper, and and she'll probably
• 04:56talk about the method of
• 04:57manifesto
• 04:58in a little bit,
• 05:00in which, you know, CBPR,
• 05:03you know,
• 05:04some people with lived and
• 05:05living experience have criticized CBPR
• 05:08as being too,
• 05:10still too difficult for,
• 05:12people on the ground
• 05:14and still not inclusive enough
• 05:15of them.
• 05:17So I like this,
• 05:19I like this continuum
• 05:21of community engagement,
• 05:22that we use at the
• 05:24NCSP,
• 05:26and really thinking about,
• 05:28you know, when you're designing
• 05:30a study or thinking about
• 05:31research,
• 05:32you can go from zero
• 05:33community involvement all the way
• 05:35to community driven and led
• 05:36by the community.
• 05:39You know, there's all these
• 05:40different
• 05:41levels, and all of these
• 05:42can include,
• 05:44some form of community engagement.
• 05:47And certain times that you're
• 05:48doing a a study,
• 05:50you know, community
• 05:51driven might not be the
• 05:53right approach. You know, trying
• 05:54to think through,
• 05:55you know, which is the
• 05:56right approach, you know, and
• 05:58and knowing and understanding, you
• 06:00know, what that entails
• 06:02and
• 06:03and,
• 06:04and thinking through with your
• 06:06community, you know, like, do
• 06:07they have you have the
• 06:08bandwidth to to take on
• 06:10that much leadership in this
• 06:11research project or they wanna
• 06:13do you know, where do
• 06:14they want to
• 06:16where do they really have
• 06:18the time and and bandwidth
• 06:19to be engaged?
• 06:21Maybe it is on this
• 06:22project. Maybe it's on an
• 06:23maybe they're they're actually not
• 06:24that interested in this question,
• 06:26and they actually want, you
• 06:27know, this this,
• 06:30you know, this research on
• 06:31methadone, not Xylazine or, you
• 06:33know, or on pain or
• 06:34on overdose. You know? So,
• 06:35like, with the the bandwidth
• 06:37of our community members thinking
• 06:39through this continuum,
• 06:41it's it's not you know,
• 06:42more is not always better
• 06:43necessarily
• 06:45and thinking thinking thoughtfully through
• 06:46each research study that you're
• 06:47you're thinking about crafting.
• 06:49And all of these,
• 06:51sort of equity indicators,
• 06:53power and control, decision making,
• 06:55ownership of data,
• 06:57responsibility,
• 06:59money, resource sharing, influence, mutual
• 07:01benefit.
• 07:02All of these are,
• 07:04at play in all of
• 07:05across this continuum, whether you
• 07:07think,
• 07:08you're thinking through them or
• 07:10not.
• 07:10So,
• 07:12then the additional context is
• 07:14history, trust, relationship building, respect,
• 07:16and transparency.
• 07:18So I think, Louise,
• 07:19I'm gonna
• 07:22turn it over to you.
• 07:24This is,
• 07:25this is your article. We
• 07:26are the research, the researchers,
• 07:28and the discounted.
• 07:29So if you just want
• 07:30to,
• 07:32you know and then I
• 07:32put up the NCSU ethical
• 07:34research manifesto
• 07:36and some of the principles
• 07:37of, the the ethical research
• 07:39manifesto. If you wanna talk,
• 07:42a little bit about,
• 07:44you know, your engagement in
• 07:45in research,
• 07:47enterprises and and, you know,
• 07:48what what you can teach
• 07:50all of us as as
• 07:51young researcher young or old
• 07:53researchers.
• 07:55Thank you, doctor Sue. And
• 07:56I'm sorry I was,
• 07:58I'm sorry I struggle with
• 07:59technology. I it gets worse
• 08:01and worse every day.
• 08:04No worries. I guess I'm
• 08:05getting older and crazier. No
• 08:06worries. But I really am
• 08:08grateful to be here today
• 08:09with you guys.
• 08:11I think this is, an
• 08:12an exciting opportunity
• 08:15for people that use drugs
• 08:16and people with lived and
• 08:17living experience.
• 08:21We often don't get our
• 08:22voice heard.
• 08:24And early on in our
• 08:26work, I was like, no.
• 08:28No. No. We're gonna stay
• 08:29away from research.
• 08:31I don't wanna do anything
• 08:32that's not boots on the
• 08:33ground right now.
• 08:35Right now, we are dying.
• 08:37I'm watching everybody die. I
• 08:39don't have any time for
• 08:40this. I don't have any
• 08:41time for what's going on
• 08:43here. Like, research is great,
• 08:46but
• 08:48whatever. You guys there's lots
• 08:49of people doing that.
• 08:51Well,
• 08:52my my colleague and friend,
• 08:55doctor Sarah Brothers, convinced me,
• 08:58along with a lot of
• 08:58other
• 09:00folks that that's not really
• 09:02the question. And I was
• 09:03asking
• 09:05the wrong question.
• 09:07Like,
• 09:08they were asking the wrong
• 09:10questions,
• 09:10so they were not researching
• 09:12the things that we needed
• 09:13them to research.
• 09:14Right? So they were doing
• 09:16good research. I don't have
• 09:17any
• 09:18problem with the you know,
• 09:20you guys are way like,
• 09:22the researchers are way smart,
• 09:24but I don't have like,
• 09:26that's not the issue.
• 09:28The issue is, are they
• 09:30asking the right questions?
• 09:32And in this situation,
• 09:34I found that they were
• 09:36not.
• 09:38And I I didn't do
• 09:39this alone, and I wanna
• 09:41I wanna bring that to
• 09:42the to the front right
• 09:44now.
• 09:46Maybe the title.
• 09:47That might have been mine.
• 09:50But,
• 09:51this is a collaboration
• 09:53of everybody
• 09:55and everybody in the union.
• 09:57And people got involved in
• 09:58this paper in ways I
• 10:00cannot
• 10:02like, it was nuts.
• 10:05Like, we weren't even paying
• 10:07people in a lot of,
• 10:10situations, Nick Foles. I mean,
• 10:12I could just list names
• 10:13for days
• 10:14about people that got involved
• 10:16in this. This was right
• 10:17at COVID.
• 10:18You know, we were standing
• 10:20in long lines.
• 10:22We were being mistreated,
• 10:25and they weren't asking the
• 10:27right questions again and again
• 10:29and again.
• 10:30I had learned from earlier
• 10:33on
• 10:34that
• 10:35I have to be pretty
• 10:37honest about what's going on
• 10:38with me if I want
• 10:41anybody to listen to me.
• 10:43Like, that's my role.
• 10:46Like, that's what I can
• 10:47give. I can give,
• 10:49like, honest analysis of what's
• 10:51happening in my life, and
• 10:53I did that with.
• 10:55And that was a hard
• 10:56that was a hard
• 10:58decision to make.
• 11:00I showed it in,
• 11:03what's the name of the,
• 11:04it was a what's the
• 11:05name of the paper?
• 11:08Do you know Kim Soo?
• 11:10The the
• 11:12it was it's the little
• 11:13paper that the harm reduction
• 11:15stuff comes in.
• 11:17It'll come to me.
• 11:19But I I I wrote
• 11:20an article with a lot
• 11:22of help because it was
• 11:23after I'd been quite sick.
• 11:25And,
• 11:27I'm on yeah. I
• 11:29I I wrote an article
• 11:30because I've been quite sick
• 11:32with with
• 11:33with many, many wounds.
• 11:37And this was going on
• 11:39at the time of the
• 11:40meth methadone manifesto
• 11:42and actually didn't allow me
• 11:44to finish some of the
• 11:45work with the meth manifesto,
• 11:47and other people were able
• 11:48to take that on. And
• 11:50that's why collaboration
• 11:52is so important, especially with
• 11:54people with lived and living
• 11:55experience. Right? Mhmm. Individual
• 11:58work does not help us.
• 12:00We need to be working
• 12:01in teams, pairs. Mhmm. Like,
• 12:04no one ever needs to
• 12:05be doing this stuff in
• 12:06isolation or alone. And one
• 12:08of the reasons why is
• 12:09our our experiences are so
• 12:11terribly different.
• 12:12Right. You know? The good
• 12:14patient, the bad patient,
• 12:16the you know?
• 12:18There's so much that
• 12:21you could talk to one
• 12:22person and you could learn
• 12:24that methadone was a great,
• 12:27intervention. And you could talk
• 12:28to another patient and be
• 12:30like, oh, I never ever
• 12:31wanna deal with that system
• 12:32again.
• 12:34So it really matters
• 12:36that you get
• 12:38a that you get a,
• 12:39a group of people
• 12:41all
• 12:43weighing in, and I think
• 12:44we had that. Do you
• 12:45want me to continue, or
• 12:47do you want me to,
• 12:48Yeah. Why don't you why
• 12:50don't you pivot into, you
• 12:51know, some of
• 12:52I know this is kind
• 12:54of old, but I know
• 12:55that NCSU had had had
• 12:58actually laid out, you know,
• 12:59like, if you wanna work
• 13:00with us,
• 13:03it's ethical record manifesto. Like,
• 13:06you know
• 13:06Gotcha. Let's talk about, you
• 13:08know, the issues. Like, what
• 13:10does it like, you know,
• 13:12I found this very compelling,
• 13:15when and, you know, we
• 13:16put it in the curriculum,
• 13:18to teach the NCSP scholars.
• 13:21You know, these are things
• 13:22that I some of the
• 13:23some of these points I'd
• 13:24never thought of, you know.
• 13:25Like, who is your research
• 13:26truly gonna benefit? You know,
• 13:28what knowledge and experiences do
• 13:29you have that equip you
• 13:31to do research with us
• 13:32in a culturally humble manner?
• 13:34You know? How do you
• 13:35plan to conduct your research
• 13:36in a way that sensitive
• 13:37people's
• 13:38past and current experiences of
• 13:40trauma? You know? Like,
• 13:42you know, like like, a
• 13:43lot of these questions are
• 13:44are what are are really,
• 13:46really important to even thinking
• 13:48about, you know,
• 13:50starting a project with a
• 13:51community group, with with living
• 13:53experience.
• 13:55This was one of the
• 13:56hardest things.
• 13:58Number one, we often don't
• 14:00feel like our experience is
• 14:01worth anything.
• 14:03Right? So we are have
• 14:05low self worths. We have
• 14:07low you know, we have,
• 14:09you know, all of these
• 14:10things. Nobody's listening to us.
• 14:12Nobody cares.
• 14:13Nobody's gonna nobody's gonna, you
• 14:16know, do what we ask.
• 14:18And I had learned by
• 14:19working with other researchers that
• 14:21that was not the case.
• 14:23You know, I worked with
• 14:24Nav, and Nav and I
• 14:25came up with love as
• 14:26a research principle.
• 14:28Mhmm. You know, we
• 14:29together
• 14:30had talked a lot about
• 14:32a lot of things.
• 14:33But when we really went
• 14:35out there to do it,
• 14:38a lot of stuff is
• 14:39lip service.
• 14:40Mhmm. And it's not I'm
• 14:42I'm not saying it's purposeful.
• 14:45I'm not saying that anybody
• 14:46sets out
• 14:48to do this and and
• 14:49not share it with people
• 14:51who've lived and living experience.
• 14:53I'm talking about the speed
• 14:54of the speed of time.
• 14:56Mhmm. You know, the speed
• 14:58of grants, the speed of
• 15:01we got things to do.
• 15:02What's on my plate right
• 15:04now? What's in front of
• 15:05me?
• 15:06And if we're not careful,
• 15:08people with lived and living
• 15:09experience get pushed to the
• 15:11back. Mhmm. Right? Not always
• 15:13you know, we have to
• 15:14be in
• 15:15we have to be up
• 15:16in their face. We have
• 15:17to be up,
• 15:19you know, really demanding. These
• 15:21are the things we want.
• 15:22These are our research principles.
• 15:24You can't talk to us
• 15:25unless you do this.
• 15:27So we appointed some people
• 15:29is that we could call.
• 15:30And I would call and
• 15:31say, look. I talked to
• 15:32this person,
• 15:33and they said that they
• 15:35were gonna do this and
• 15:36this and this and this
• 15:37and this.
• 15:38And she would say,
• 15:41that doesn't sound so good
• 15:42to me.
• 15:43You know? Or she would
• 15:44attend the call with me,
• 15:46and we would talk about
• 15:47what did you think.
• 15:49And,
• 15:51we would have wildly different
• 15:52experiences sometimes.
• 15:54Mhmm.
• 15:55And and that had to
• 15:56do with race, culture, class
• 15:58Mhmm.
• 15:59Kind of drug use, kind
• 16:01of intersections
• 16:02that we were dealing with,
• 16:04you know, what kind of
• 16:05drugs people used,
• 16:07whether they used Suboxone or
• 16:09buprenorphine,
• 16:10what kind of pain they
• 16:11had.
• 16:12All of that was really
• 16:14intense.
• 16:15Mhmm.
• 16:16And as we started to
• 16:18uncover this,
• 16:19it became very clear that
• 16:21we needed something larger than
• 16:23community based research.
• 16:25We needed community driven research.
• 16:27Mhmm. And the reason for
• 16:29that
• 16:30is really because if we're
• 16:32not driving the research,
• 16:34then somebody else is.
• 16:37And they are not the
• 16:38people who've lived at living
• 16:39lived and living experience.
• 16:41They are the ones that
• 16:42are supposed to be listening
• 16:44to the ones with lived
• 16:45and living experience.
• 16:47But
• 16:48I think when it comes
• 16:49from us,
• 16:51you know, we have a
• 16:52new piece and there's gonna
• 16:53be a webinar soon, and
• 16:55it's gonna be about oxygen
• 16:57and the use of oxygen
• 16:59for,
• 17:00for,
• 17:01cocaine overdose
• 17:02and for,
• 17:03opioid overdose,
• 17:05and it's amazing. And this
• 17:06is community
• 17:08directed research.
• 17:10This is stuff we did
• 17:11on-site,
• 17:12you know,
• 17:13on you know, we did
• 17:15this stuff
• 17:16when nobody
• 17:17nobody was doing, like,
• 17:19scientific based research,
• 17:21but we researched it. We
• 17:23did it with,
• 17:25Beyond Test and Cured.
• 17:27This was a this was
• 17:28a hepatitis c research.
• 17:31So we are accustomed to
• 17:33doing
• 17:34research
• 17:35that is
• 17:38focused on
• 17:39our subject matter. We're doing
• 17:41some on drug seller research.
• 17:43I love it.
• 17:46When we had a pill
• 17:47epidemic,
• 17:49we we interviewed doctors. Right?
• 17:52Well,
• 17:53we've got a a a
• 17:56drug
• 17:57epidemic.
• 17:58We need to we need
• 17:59to interview drug sellers
• 18:01and drug users and people
• 18:02that sell drugs that you
• 18:03use drugs.
• 18:04You know, we need to
• 18:05be doing that, and we
• 18:06are the right people for
• 18:08that.
• 18:10And by having
• 18:12researchers that were willing to
• 18:14do this with us,
• 18:17and the and the manifesto
• 18:19that we developed
• 18:20with now and we did
• 18:21that with the help
• 18:23of, you know, the Canadians,
• 18:24Van Du,
• 18:26you know, people that had
• 18:28been in this space before,
• 18:31input.
• 18:32Like, all of these people
• 18:33that had had done some
• 18:35of this work and and
• 18:37had
• 18:39some experience that we didn't
• 18:41have.
• 18:42Because I'm gonna tell you
• 18:43the one thing about doing
• 18:44stuff without experience
• 18:46is you're gonna reinvent the
• 18:47wheel a hundred times over.
• 18:49Somebody has done this.
• 18:51Like,
• 18:52you just have to look
• 18:53for it.
• 18:54You have to look for
• 18:55it. You have to find
• 18:56it. You have to see
• 18:57what you can
• 18:58put together. There's a
• 19:00I wish I had it.
• 19:01There's an HIV maybe it's
• 19:03in there. I don't know
• 19:04whether you you have the
• 19:05slide set. It's an HIV
• 19:07period
• 19:08pyramid
• 19:09of learning, and I'll find
• 19:10it maybe when you're talking
• 19:11and share it with you
• 19:12guys. And and it was
• 19:14it was, developed by people
• 19:16that were living with HIV.
• 19:18And so it was something
• 19:19that was able to help
• 19:21us,
• 19:23as we
• 19:24as we worked to do
• 19:25this.
• 19:27We rang the alarm bells
• 19:28about Xylazine.
• 19:30Oh, I don't know. How
• 19:31long ago was it? Five
• 19:32years ago?
• 19:34I think my partner was
• 19:35the first to say we've
• 19:36got
• 19:37we've and with this FTIR,
• 19:40we, you know, we've got
• 19:41Xylazine in our drug supply,
• 19:44and nobody acted.
• 19:46If we had acted at
• 19:48the time that we talked
• 19:49about it,
• 19:50if people had listened
• 19:51to people that use drugs,
• 19:54I think we'd be in
• 19:55a different plate. I I
• 19:57know we'd be in a
• 19:57different place right now.
• 19:59I know that if we
• 20:00choose to listen to us
• 20:02about oxygen
• 20:03and about people with with,
• 20:06with lived and living experiences,
• 20:09we will have robust interventions
• 20:11that we can actually use
• 20:13to,
• 20:15combat this crisis.
• 20:16If we listen about drug
• 20:19sellers and drug users and
• 20:21them not being nameless, faceless
• 20:22people that are just out
• 20:24there delivering, you know, drugs,
• 20:28we will do
• 20:30amazing work.
• 20:31I am certain
• 20:33that if we follow the
• 20:34pathway
• 20:35that we've set forth, you
• 20:37know, with with with Nav,
• 20:39with Mary,
• 20:41with Kim, with, you know,
• 20:42with all of these all
• 20:44of these folks,
• 20:48I feel certain
• 20:50that we are well on
• 20:52our way to,
• 20:53to really doing good robust
• 20:55research. We gotta remember,
• 20:57this this stuff has to
• 20:58be written in ways that
• 21:00we can read it.
• 21:02Right? I have a Miles
• 21:03per hour, and it's still
• 21:05over my head sometimes.
• 21:06So I'm always screaming, eighth
• 21:08grade level. You know? Maybe
• 21:11six.
• 21:12You know?
• 21:14Writing these things in ways
• 21:16that are that the community
• 21:17can really
• 21:19can can really do, like,
• 21:20understand
• 21:22and don't have to look
• 21:22up because,
• 21:24you know, I did an
• 21:25experiment one day to see
• 21:27how much I actually understood
• 21:30the words. You know?
• 21:32And I didn't and I
• 21:33didn't look any of them
• 21:34up one time, and I
• 21:35looked up some that I
• 21:36was questionable about others.
• 21:38And I wasn't exactly right
• 21:40about a lot of them.
• 21:41So I think,
• 21:43like, knowing what you're reading
• 21:44is important,
• 21:46and it makes a big
• 21:47difference.
• 21:48And it's the responsibility
• 21:49of the writers of the
• 21:51research
• 21:52to write research in ways
• 21:54that
• 21:55everybody can understand them. This
• 21:57is not this is not
• 21:59a a ego party.
• 22:02I I understand people want
• 22:03it to sound good
• 22:05and flow and use the
• 22:06right language,
• 22:08but we need to consider
• 22:10who we're writing for
• 22:12and who are the people
• 22:13that are actually suffering and
• 22:14struggling,
• 22:16and informing.
• 22:18Right?
• 22:19Because at the end of
• 22:20the day,
• 22:21I wanna see what I
• 22:23said,
• 22:24you know, in the paper.
• 22:26I wanna see the language
• 22:28that I used.
• 22:29You know? It's important to
• 22:31me. That's the way I
• 22:32think about it.
• 22:35And I just
• 22:38the wounds
• 22:40that we're dealing with
• 22:41right now I know North
• 22:43Carolina's Survivors Union is opening
• 22:45a wound clinic,
• 22:47and it is cutting edge,
• 22:49guys. Like, this is the
• 22:51coolest thing we've ever
• 22:53like, we are taking on
• 22:55a,
• 22:56we're taking
• 22:58I I've had I'm on
• 22:59an I'm online. I'll be
• 23:01there in a minute.
• 23:04So this wound care
• 23:05this what time? This wound
• 23:07I'm so sorry. I'm doing
• 23:08this from my house.
• 23:10No worries. This wound care
• 23:12room is,
• 23:14is
• 23:15cutting edge. Like, really,
• 23:18we have a a space
• 23:19not where people can come
• 23:20get their wounds treated,
• 23:23but where people can come
• 23:25treat their own wounds and
• 23:26learn about wounds and be
• 23:28in a sterile environment
• 23:30and have access to wound
• 23:31care that costs
• 23:33so much. I mean, we're
• 23:34talking about a lot of
• 23:37money. You know, these these
• 23:38Johnson and Johnson
• 23:40band aids, these McKesson band
• 23:42aids,
• 23:42they are
• 23:44I mean,
• 23:46I they're they're so exorbitant.
• 23:48The cost of them are
• 23:50so I don't know how
• 23:51anybody is able to keep
• 23:53their wounds in good order.
• 23:55But when I went to
• 23:56wound care the other day
• 23:57for the first time in
• 23:58a long time,
• 23:59they said, we don't know
• 24:00how you keep your wounds
• 24:02so
• 24:04in such good shape. We've
• 24:06never seen somebody that has
• 24:07had wounds for this amount
• 24:09of time
• 24:10that doesn't have the black
• 24:11necrosis
• 24:12that is really taking care
• 24:13of what's going on.
• 24:16And it's because I have
• 24:17access
• 24:18to these wound care supplies
• 24:20and this wound care information.
• 24:23And
• 24:24I want everybody to have
• 24:25that. And we have people
• 24:26learning how to clean
• 24:28so that somebody you know,
• 24:29so it's not just a
• 24:31one big
• 24:32one big, you know, MRSA
• 24:34room of infection.
• 24:35You know, we have we
• 24:36have specialized cleaners coming in
• 24:38and cleaning after every
• 24:40after every person uses the
• 24:42room,
• 24:44and we're taking account of
• 24:45what wound,
• 24:46you know, of what wound
• 24:48care items we're actually using.
• 24:51I think this is
• 24:53something every group needs to
• 24:55do. When we start talking
• 24:57about the wound room is
• 24:58when people start showing us
• 25:00their wounds.
• 25:02Before that, they don't wanna
• 25:03share with us anything about,
• 25:05you know, it's private. It's
• 25:07it's something they're there's
• 25:09it's stigma. It's all that.
• 25:11Mhmm. But when they know
• 25:13we're experiencing
• 25:14something like it
• 25:15and we're talking about wounds
• 25:17from here to here
• 25:19and on your leg from
• 25:20thigh to to to knee.
• 25:22Mhmm. I mean, these are
• 25:23not pretty wounds. These are
• 25:26these are
• 25:27these are ones that
• 25:30are painful,
• 25:31are miserable,
• 25:33and,
• 25:35have not gotten the attention
• 25:36they deserve. And so
• 25:38my call to action is
• 25:40really you know, it's important
• 25:42that we take this on
• 25:43as one of the biggest
• 25:45one of the biggest public
• 25:46health initiatives because I'm gonna
• 25:48tell you what, when we
• 25:49cite,
• 25:50money,
• 25:51oh, it costs x amount
• 25:52of money to treat HIV
• 25:53or to treat hepatitis c
• 25:56or to, you know, deal
• 25:58with overdose.
• 25:59Well, that doesn't have anything
• 26:01to do
• 26:02with endocarditis
• 26:04or,
• 26:05or wound care or vein
• 26:07care. That's way more expensive.
• 26:10And the level of of,
• 26:13pain management we're given
• 26:15is,
• 26:19is really poor. And
• 26:22these ones make me cry
• 26:23at night. I mean, these
• 26:24are not these are not
• 26:25painless.
• 26:26These ones are not painless,
• 26:28and and
• 26:29and and and
• 26:31people tend to think we
• 26:32deserve them.
• 26:34And we and I've and
• 26:35I've come up with one
• 26:36other thing, and then I'm
• 26:36gonna shut up for you,
• 26:37doctor Sue, because you have
• 26:38lots to say. Mhmm.
• 26:41Everybody thinks that they're an
• 26:43addiction specialist. I've figured it
• 26:45out.
• 26:46Everybody thinks that that because
• 26:48that's what they heard early
• 26:49on. You gotta treat the
• 26:51addiction before you treat anything
• 26:52else. You gotta treat substance
• 26:54use disorder
• 26:55before you treat anything else.
• 26:58And so first thing people
• 27:00do is they see signs
• 27:01of addiction
• 27:02or see signs of substance
• 27:04use disorder.
• 27:05And boy, oh, boy,
• 27:07they get busy, you know,
• 27:08trying to get you on
• 27:10buprenorphine when you're already on
• 27:11methadone
• 27:12or do this when you're
• 27:14you know? And and and
• 27:15you'll say, well, I've already
• 27:17you know, I have this
• 27:18under control. I have a
• 27:19doctor that's handling my pain.
• 27:21I have somebody that's currently
• 27:24doing this,
• 27:25and they
• 27:26are determined
• 27:28to get it in their
• 27:29own hands. So I think
• 27:30if I can say anything
• 27:32before I leave is
• 27:34really pushing this idea that,
• 27:37you know, there's specialists for
• 27:39almost everything,
• 27:40but certainly
• 27:42for pain
• 27:45and addiction.
• 27:47And I
• 27:48I am now going into
• 27:50hospitals
• 27:51and going into
• 27:52into situations where I'm able
• 27:54to say, I have doctors
• 27:55that care for this. Could
• 27:57you focus on this?
• 28:00And it's making a lot
• 28:01of difference. So if a
• 28:03sentence makes a lot of
• 28:04difference
• 28:05Mhmm. Yeah.
• 28:07Then
• 28:08I've found one.
• 28:10So I'm gonna let you
• 28:11talk, doctor Sue. Sorry. I've
• 28:12got stuff going on. Louise
• 28:13Louise is Louise is the
• 28:15the star of this of
• 28:16this show,
• 28:18and so many,
• 28:19so much of what Luis
• 28:21has shared is,
• 28:23is really is really core
• 28:25to,
• 28:27core to this work.
• 28:28So I'm gonna loop back
• 28:30to Luis in a second,
• 28:33and talk about, but,
• 28:35you know, some ideas. Obviously,
• 28:37you,
• 28:39community engaged research
• 28:41don't necessarily have to
• 28:44have to
• 28:46sell sell it to to
• 28:47the people that are here.
• 28:49But it you know, it's
• 28:50it's it's incredibly meaningful. It's
• 28:53relevant. It's,
• 28:54it's
• 28:55timely. It's responsive to everyone's
• 28:57needs.
• 28:58And most importantly,
• 29:00you know, we you know,
• 29:02valuing the relationships that you
• 29:03have, and and that Louise
• 29:05and I have had for
• 29:06a long time,
• 29:08and and hopefully having an
• 29:10impact on policies and practices.
• 29:13This is some
• 29:14work from,
• 29:16from Katie Simon,
• 29:18on on the need for
• 29:20this kind of research, community
• 29:21driven research. And,
• 29:23you know,
• 29:25you know, Louise, if you
• 29:26wanna chime in on any
• 29:27of these, feel free to
• 29:28do so.
• 29:29But,
• 29:30focusing on timely,
• 29:31accessible payments of living wages,
• 29:35making the findings accessible and
• 29:38understandable, like Louise said.
• 29:41Okay. In a given I
• 29:41don't think we're seeing your
• 29:43slides.
• 29:43Oh, you're not? Okay.
• 29:46Thank you. Sorry.
• 29:49Let me see.
• 29:53Can you see them now?
• 29:54Perfect.
• 29:55Okay. Great.
• 29:57So,
• 30:03I'm not gonna read all
• 30:04of these for you, but
• 30:04sort of, like, prior priority
• 30:06high hiring, you know, trying
• 30:08to get people hired. I
• 30:09know that,
• 30:10Emily Wong and Lisa Puglisi,
• 30:12have spent a lot of
• 30:13time at Yale trying to
• 30:14do this, hiring people with
• 30:15histories of incarceration,
• 30:18you know, helping people,
• 30:20you know, sort of advance
• 30:22them their,
• 30:24careers,
• 30:25and their and their ability
• 30:26to and their livelihoods,
• 30:29and, you know, thinking through
• 30:31IRBs not only as protectionist,
• 30:34entities, but also as empowering
• 30:36entities.
• 30:39Katie Simon, you know, also
• 30:41talks about, you know,
• 30:44the urgent research questions that
• 30:45come up, but not being
• 30:46able to implement them and
• 30:48really explore them with an
• 30:49apparatus
• 30:50behind you, like, you know,
• 30:53like Duke University or, you
• 30:55know, with, like, a lot
• 30:56of,
• 30:57folks, you know, that can
• 30:58be mobilized,
• 31:00you know. And the research,
• 31:02lends our experiential observations credibility,
• 31:06you know, in the eyes
• 31:07of institutions, policymakers, and the
• 31:09public,
• 31:10and and hopefully can influence
• 31:12policy.
• 31:15And,
• 31:16but, you know, the idea
• 31:18also that that Luis said
• 31:19is that, you know, not
• 31:21being misinterpreted,
• 31:22not being distorted,
• 31:23you know, many times.
• 31:25And I don't know,
• 31:27Louise, you know, do you
• 31:28get into the nitty gritty
• 31:29with when you're working on
• 31:30a research project where you're
• 31:32actually going through the coding
• 31:34and you're like,
• 31:35actually, I don't agree with,
• 31:36like, the way that you've
• 31:38quote me here, and I
• 31:39don't actually agree with your
• 31:41conclusion of this theme. Like,
• 31:42I actually don't think this
• 31:43is right here.
• 31:45You just wanna weigh in
• 31:46on, you know, like, oh,
• 31:47I was only asked to
• 31:48weigh in on the inform
• 31:50the questionnaire, but I wasn't
• 31:52asked to, you know, look
• 31:54at the results and the
• 31:55data analysis or, you know,
• 31:57I wasn't trained to. And
• 31:59so I feel weird asking
• 32:01to look at it or
• 32:02you know? So, like, do
• 32:03you wanna weigh in on,
• 32:05you know, I mean, asking
• 32:06of that. I mean, I
• 32:07don't think especially
• 32:09quantitative
• 32:10work. Like, that's always
• 32:13that's, like, that's always outside
• 32:15of of what what is,
• 32:18given to us, it seems.
• 32:20And,
• 32:21and I have to say,
• 32:22Mary Mary Figgett is amazing
• 32:25at at helping us,
• 32:27get involved and and asking
• 32:29the questions
• 32:30so that we even know
• 32:32to look.
• 32:33Because sometimes we just don't
• 32:34even know we we don't
• 32:36even know what we're looking
• 32:37at.
• 32:39I've gotta say this too.
• 32:42Like, beyond
• 32:44knowing what to look at,
• 32:45knowing how to code, knowing
• 32:47how to knowing how to
• 32:49see the
• 32:50subject matter and put it
• 32:52in a way
• 32:53that it it it it
• 32:55maximizes
• 32:56impact. Right? And that and
• 32:58that,
• 32:59and that other researchers you
• 33:01know, putting it in a
• 33:02language,
• 33:03the shared language of the
• 33:04researcher.
• 33:05Right? I get I get
• 33:07that that's what's happening.
• 33:08So being able to do
• 33:10that and speak this shared
• 33:12language
• 33:13is huge.
• 33:15But I want to warn,
• 33:17it comes with an
• 33:19it comes with a stigma,
• 33:22and it comes with a
• 33:23truth
• 33:25that we have to we
• 33:27have to understand.
• 33:28When we put ourselves out
• 33:30there for this kind of
• 33:31thing,
• 33:33people
• 33:35you know, you can tell
• 33:36somebody you're a drug user
• 33:37all day long,
• 33:39but until they
• 33:40see
• 33:41a wound,
• 33:44they don't identify you as
• 33:45that.
• 33:46You know what I mean?
• 33:47I don't know how to
• 33:48explain it
• 33:49other than,
• 33:50like,
• 33:55it is really
• 33:56difficult
• 33:57once people
• 33:59really begin to
• 34:01to see you as
• 34:04a wound
• 34:05or
• 34:06see you as
• 34:08you know, which is not
• 34:08what we're aiming for. Right?
• 34:13But it it happens,
• 34:15and it is frightening.
• 34:18And I have watched
• 34:20stigma increase
• 34:22around me,
• 34:24around people I'm working with,
• 34:27people not understanding what we're
• 34:28doing and why we're doing
• 34:30it.
• 34:32We're doing it to save
• 34:33lives.
• 34:34Mhmm. We're doing it because
• 34:36it's the reality.
• 34:37We're doing it because no
• 34:39one is exempt. And dear
• 34:40god, if I'm not exempt,
• 34:45then no one is.
• 34:46I mean, I really believe
• 34:48that. Here I am, and
• 34:49I have access to
• 34:51doctors and people and researchers
• 34:53and folks that care,
• 34:55like, for real that will
• 34:56call up and and throw
• 34:58fits.
• 34:59And
• 35:00it doesn't change things all
• 35:02the time. Systems are insane.
• 35:05I have learned some powerful
• 35:07lessons about what a hospital
• 35:09system is.
• 35:11And
• 35:12and can you change a
• 35:13hospital system?
• 35:15Good luck.
• 35:18It is not a matter
• 35:20of
• 35:21I'm here to to be
• 35:23there for Louise, and this
• 35:24is what we're gonna do.
• 35:26Systems
• 35:27are
• 35:29complicated, complex. I don't know.
• 35:31I'm sure there's a
• 35:32a
• 35:33a definition that, like, explains
• 35:36what a system in a
• 35:37hospital is and does,
• 35:38but it is complicated.
• 35:41And
• 35:41they are not easy to
• 35:43change. They are not easy
• 35:44to
• 35:46to build
• 35:47over, under.
• 35:49You gotta go through it.
• 35:51I don't know. Like, you've
• 35:52really gotta you've really gotta
• 35:54be willing
• 35:55to
• 35:57to fight the fight. Mhmm.
• 35:59There's no there's no,
• 36:02there's no way
• 36:04that I have found that
• 36:05people are just going to
• 36:07just going to take care
• 36:08of you.
• 36:09Like,
• 36:11this is a this is
• 36:12a hard moment we're in,
• 36:14especially as it as as
• 36:16we deal with the stigma
• 36:17around people that use drugs.
• 36:18So just knowing that,
• 36:20and and then you add
• 36:21pain to it. I have
• 36:23one I have one
• 36:25story, and and,
• 36:27and it was years ago
• 36:28when I was getting my
• 36:29leg,
• 36:30amputated.
• 36:31And the guy I was
• 36:33on methadone
• 36:34and the guy and he
• 36:35said, well, you know, we
• 36:36can't give you any other
• 36:37pain medicine
• 36:38because, you know, you're you're
• 36:40not eligible for it. And
• 36:41he pulled out a picture
• 36:42of my criminal,
• 36:44like, mug shot
• 36:46and showed me that, and
• 36:47I thought this doesn't have
• 36:48anything to do
• 36:49with,
• 36:51pain or medicine or anything
• 36:53like that.
• 36:55But that was a reality
• 36:56for me.
• 36:57And sometimes the stories I
• 36:59hear from people, they're so
• 37:01bizarre.
• 37:02They're hard to even believe.
• 37:04They're like,
• 37:06it's the stories that are
• 37:07so beyond imagination
• 37:09that are the ones that
• 37:10are true
• 37:12and really,
• 37:15sad.
• 37:16We need to be there
• 37:17fighting for people and and
• 37:19holding their hand and advocating
• 37:21for them and remembering
• 37:22that, like,
• 37:24we might be mad and
• 37:25angry and it might be
• 37:26a hard day and, like,
• 37:29don't take it personally.
• 37:30Like,
• 37:31you know, just be there
• 37:32for us. You know? Because
• 37:34helping somebody with with doctor's
• 37:36visits is is no fun
• 37:37for anybody.
• 37:39That's all I have to
• 37:40say. I just I I
• 37:41really admire people that that
• 37:44that provide
• 37:45support
• 37:46and and and assist people
• 37:48because it is no it's
• 37:49no fun.
• 37:51Louisa,
• 37:52doctor Filene put a a
• 37:54a question in that I'm
• 37:55hoping that we can we
• 37:56can,
• 37:57discuss together
• 37:58about acute pain management in
• 38:00the face of xylazine wounds,
• 38:02OUD, and chronic pain, and
• 38:04any research questions that
• 38:06come to mind.
• 38:08I'm just gonna go to
• 38:09a slide,
• 38:12about
• 38:13Xylazine.
• 38:15And you've had these wounds
• 38:17since,
• 38:18these are now
• 38:19fairly, like, it correct me
• 38:22if I'm wrong. I you
• 38:23and I were on a
• 38:24webinar when Xylazine first emerged
• 38:26when I was still at
• 38:27Harm Reduction Coalition in twenty
• 38:29twenty
• 38:30when COVID was emerging. And
• 38:32you you your arms were,
• 38:35you know, you consulted me
• 38:36about your arms,
• 38:38sort of back back then.
• 38:40And I don't know if
• 38:40that was the earliest that
• 38:42you had them. But Right.
• 38:43What I'm the picture. Like,
• 38:45what what would you share
• 38:47about,
• 38:48if if you felt you
• 38:50were adequately
• 38:52treated
• 38:53for pain,
• 38:54and OUD,
• 38:56you know, like
• 38:57or, you know, how can
• 38:59you help us as researchers
• 39:00think through ways
• 39:03that we can approach this
• 39:04question?
• 39:06You know, like, how painful
• 39:08are the you know, what
• 39:09kind of research questions should
• 39:11we be asking? And and
• 39:11I actually have a slide,
• 39:13you know, I didn't I
• 39:14didn't have photos of your
• 39:15wounds, but this is photos
• 39:16from one of my patients'
• 39:17wounds. I can pull some
• 39:19up while you're talking. I
• 39:20mean, the you know, you
• 39:21you know,
• 39:22they can be similar. But,
• 39:25so do you you know,
• 39:27what I can also show
• 39:28what what I've tried too.
• 39:29At the methadone clinic, we
• 39:30would try to split dose
• 39:32methadone.
• 39:34We would try to
• 39:36do, full agonist hydromorphone
• 39:38on top, so dilaudid on
• 39:40top.
• 39:41If possible, trying to use,
• 39:43even thinking about, like, local
• 39:45anesthetic or thinking about, like,
• 39:47ways,
• 39:48you know, given that these
• 39:49are wounds,
• 39:50what we could do.
• 39:52You know, how do we
• 39:53understand,
• 39:54this pain? You know what
• 39:56I mean? Like, what you
• 39:57know, like, so so I
• 39:58don't know if you I've
• 39:59got a knob.
• 40:00My strategies. I and that
• 40:02is to listen to people
• 40:04that use drugs. How about
• 40:05that? Right.
• 40:07As I have done this
• 40:08now for a very long
• 40:09time,
• 40:10my poor act I feel
• 40:12so
• 40:13you know, my doctor is
• 40:15so
• 40:16quiet,
• 40:17and I've I think I'm
• 40:19a lot for him.
• 40:20When I met him, he
• 40:21was wanting to, like, provide
• 40:23services for our clinic, and
• 40:25he got stuck with me
• 40:27as basic.
• 40:30And,
• 40:31it's been it's been a
• 40:32long haul.
• 40:34But over the years, we've
• 40:35come to trust one another,
• 40:39in a really cool way.
• 40:42And I happened to
• 40:44meet somebody
• 40:45that saw us at the
• 40:47methadone conference,
• 40:50a a doctor that saw
• 40:51us at the methadone conference
• 40:52to help prescribe pain management.
• 40:55And
• 40:56that was,
• 40:59you know, that was huge.
• 41:01You know, here was somebody
• 41:03that did pain management with
• 41:04people with substance use disorders.
• 41:06Mhmm.
• 41:07Kim, you've been
• 41:09amazing.
• 41:10Just throwing your weight. You
• 41:12know, just just giving
• 41:14some
• 41:15you know,
• 41:16people like me, we need
• 41:18people to say, hey.
• 41:20This woman's not playing around.
• 41:22You know?
• 41:24The pain that I have
• 41:26the only thing that I
• 41:27can say when I'm describing
• 41:28pain is
• 41:31I have to
• 41:33it's so painful that I
• 41:35I I can't
• 41:37I I can't function.
• 41:39Right? And so it's I
• 41:40can't always put a number
• 41:41on top of it. I
• 41:42can't tell you how much
• 41:44pain management I need because
• 41:46you've gotta
• 41:47give me enough to test.
• 41:48Like, you've gotta trust me
• 41:50enough
• 41:50to know or, you know,
• 41:52or I'll not you know,
• 41:54these things. But what I
• 41:56the goal is to get
• 41:57away from fentanyl.
• 41:58Right? The goal is to
• 42:00get away from street fentanyl
• 42:02in my world.
• 42:04We've used ketamine
• 42:07in one of my and
• 42:08that's not illegal.
• 42:10That's
• 42:11a a sort of on
• 42:12the side, we're doing a
• 42:13DBT
• 42:14ketamine program
• 42:16that is working,
• 42:18miracles, and we are consulting
• 42:20with
• 42:22many foundations
• 42:23on that.
• 42:25But, truly,
• 42:27it's the hydromorphone
• 42:28that's been really
• 42:30helpful
• 42:31Mhmm. To put on top.
• 42:32Right? I have to have
• 42:33methadone.
• 42:34I do us, like, what
• 42:36what,
• 42:37like, you know, can you
• 42:38tell us, like,
• 42:40how, you know,
• 42:43like, you know, how we
• 42:44should think about,
• 42:48I guess,
• 42:50doing that safely. And and,
• 42:53and then also thinking back
• 42:54to the ketamine question and
• 42:55trying to work with foundations,
• 42:57the questions you have,
• 42:58it's like it's an interesting
• 43:00research question. Like, is
• 43:02ketamine, you know, a useful
• 43:05therapeutic,
• 43:07for acute pain from xylazine
• 43:09wounds or chronic pain? You
• 43:11know? And so how, you
• 43:12know, how how should we
• 43:13approach
• 43:14those questions?
• 43:16You know, I I think
• 43:17these questions need to be
• 43:18asked. I think the way
• 43:20they do,
• 43:21ketamine,
• 43:23is sort of atrocious now
• 43:24anyway. Like, just in the
• 43:26in the,
• 43:27like, sort of in the
• 43:28patient
• 43:30room,
• 43:30you know. So I don't
• 43:32see a lot of value
• 43:33in the current in the
• 43:34current systems,
• 43:35but that but I haven't
• 43:37studied that, and that's not
• 43:38my business.
• 43:40If it works for folks,
• 43:41that's great, and I don't
• 43:42wanna knock that.
• 43:44But I do think,
• 43:46there has to be a
• 43:47level of trust that you
• 43:49trust your patient
• 43:50to
• 43:51take reasonable amounts of
• 43:54of,
• 43:55pain medicine. Understand pain medicine.
• 43:58Understand the the time lapses.
• 44:01Understand that, like, you're not
• 44:02gonna feel it all at
• 44:03the same time.
• 44:04You you know what I
• 44:05mean?
• 44:08I think when when
• 44:09the doctor that I was
• 44:10working with and still am
• 44:12working with,
• 44:14really began to trust each
• 44:16other.
• 44:17Things changed
• 44:18because I was able to
• 44:19say,
• 44:20I need a split dose
• 44:22here Mhmm. With the methadone.
• 44:23If I don't have a
• 44:24split dose of methadone, then
• 44:26everything at night goes to
• 44:28shit. Mhmm. Like, didn't I
• 44:29take too much? Mhmm.
• 44:32And and, like, and my
• 44:34numbers are all off and
• 44:35everything's Right. But I track
• 44:36it just like a period.
• 44:40And for men,
• 44:42you know, you can figure
• 44:44it out.
• 44:46But I but that's the
• 44:47way I I have found
• 44:49as a very useful way
• 44:51to track my pain,
• 44:53since I don't have to
• 44:54track it for a period
• 44:55anymore.
• 44:56I I use it in
• 44:57that kind of way. So
• 45:00how much did I have
• 45:01to take?
• 45:02Did it relieve my pain?
• 45:04Did I cry?
• 45:05Did I get myself to
• 45:07a place that I was,
• 45:08like,
• 45:10like, unable to to to
• 45:12function?
• 45:13And it took the methadone
• 45:14clinic a very long time
• 45:16to participate.
• 45:18They are you know, I
• 45:20had to get four doctors
• 45:22involved
• 45:23to get the methadone clinic
• 45:24to understand that
• 45:27ten,
• 45:28but I can't be on
• 45:29a hundred and eighty
• 45:31at eight in the morning.
• 45:32Mhmm. You know? I'll be
• 45:34smashed in front of you
• 45:36know?
• 45:37I wanna I wanna participate
• 45:39in my life.
• 45:40So so split dosing is
• 45:42really important for me.
• 45:44So what we're talking about
• 45:46is trust,
• 45:47doctor Hsu.
• 45:49Like, everything that I'm thinking
• 45:50of,
• 45:51like, revolves around trust.
• 45:53Like, it it it comes
• 45:55back home to,
• 45:56can I trust you to
• 45:58to to do this? Mhmm.
• 46:00And, you know, after four
• 46:02years and five years of
• 46:03meeting with these doctors and
• 46:06them knowing you know, seeing,
• 46:08you know, me me attending
• 46:10appointments,
• 46:11me talking to them, me,
• 46:14like, being a
• 46:15patient that's participating
• 46:17in my
• 46:20in my life and in
• 46:21the lives of others,
• 46:23I think it's fair to
• 46:25say that I am trustworthy,
• 46:27you know, insofar as I
• 46:29share if I use other
• 46:31drugs.
• 46:31You know?
• 46:33We have to create an
• 46:34environment where I can be
• 46:36honest. Right.
• 46:37And if we can't have
• 46:39yeah.
• 46:40This is amazing. We have,
• 46:42just a couple minutes left.
• 46:44So, I don't know if
• 46:45David wants to,
• 46:49ask one of the some
• 46:50of the questions that are
• 46:51in the chat, or I
• 46:52can
• 46:53to you,
• 46:54or anyone else wanna open
• 46:56up and ask their question.
• 46:57Very extremely helpful.
• 46:59I think the
• 47:01point specifically about what questions
• 47:03are being asked and what
• 47:04are the important
• 47:06outcomes, I've heard,
• 47:07quite a bit
• 47:09from both you and from
• 47:10Louise about,
• 47:12you know, the outcomes may
• 47:13not be the numeric,
• 47:15pain scale. It may be
• 47:17something as Louise mentioned. You
• 47:19know, the goal is to
• 47:20get away from fentanyl. So
• 47:21maybe an outcome is, you
• 47:23know,
• 47:24changes in Less bags. Yeah.
• 47:27As to changes in in
• 47:28pain scores and exactly.
• 47:31I think the other thing
• 47:32I've I've heard is,
• 47:35you know, this issue of
• 47:36control, obviously. And,
• 47:39I I've very,
• 47:42precisely heard Louise say that,
• 47:45you know, this is all
• 47:47new for every everyone,
• 47:49and she can't tell you
• 47:51exactly how much
• 47:52hydromorphone she's gonna need. But
• 47:55she needs enough
• 47:56so that she can decide
• 47:57that, you know, at a
• 47:58certain time of day, this
• 48:00works, this isn't working.
• 48:02And if we have too
• 48:03many controls on that,
• 48:05she may not have enough,
• 48:06and we may not be
• 48:07able to answer the questions.
• 48:08So it's this issue of
• 48:10of access and control that
• 48:11we need to think through.
• 48:13There's a great question in
• 48:14the chat,
• 48:17one,
• 48:18from,
• 48:20Regini Jawa.
• 48:22She says the timeliness of
• 48:24harm reduction in community driven
• 48:25research
• 48:27is so key,
• 48:28yet NIH and foundation grant
• 48:30cycles have delayed timelines that
• 48:32often don't align with these
• 48:34needs.
• 48:35Any suggestions on how we
• 48:36can equitably fund community partners,
• 48:39this critical work, and disseminate
• 48:42it in a timely fashion?
• 48:48You wanna go, Luis?
• 48:51I mean I mean, for
• 48:52example, you you wanna talk
• 48:53you wanna say how the
• 48:54wound care room, like Oh,
• 48:56yeah. I I can do
• 48:57that. Are you working with
• 48:58researchers?
• 48:59Are you working with Yeah.
• 49:01Mccesson?
• 49:02Like, how are you like,
• 49:03this is this is
• 49:05your goal as a community,
• 49:07you know, as as a
• 49:08community offering to to keep
• 49:11people alive and treat their
• 49:12pain and wounds.
• 49:14And so how how can
• 49:16you align that up with
• 49:17the researchers,
• 49:18with funders, with
• 49:19you know, how how have
• 49:20you pulled this off,
• 49:23so that it's both meaningful,
• 49:24but there's also interesting and
• 49:26important research questions,
• 49:29and and then maybe that'll
• 49:30be the end.
• 49:31Yeah. I'm really sad about
• 49:33it. I mean, this was
• 49:34so the the research that
• 49:36we had
• 49:38had in
• 49:40that was being
• 49:42reviewed, you know, is probably,
• 49:44you know, not gonna get
• 49:46not gonna get it in.
• 49:47But
• 49:52some of the wound care
• 49:53stuff,
• 49:54we know that McKesson
• 49:56has a lot of money,
• 49:57and and Johnson and Johnson
• 49:58have a lot of money.
• 49:59And so we're gonna write
• 50:00privately,
• 50:02to them, and we're gonna
• 50:04ask for product donations.
• 50:06I mean,
• 50:07I don't see how they
• 50:08can't provide product donations.
• 50:11I really don't. And we're
• 50:12gonna work with Remedy Alliance,
• 50:14in a in a in
• 50:15a, you know, some sort
• 50:17of capacity building,
• 50:19something to help us
• 50:21find ways to get,
• 50:23people that use drugs access
• 50:24to this information Mhmm. You
• 50:26know, to these supplies.
• 50:27That's essential.
• 50:29I mean, a lot of
• 50:30this
• 50:31is about getting
• 50:33education money. Right? And we
• 50:35can still do that.
• 50:36So, you know, getting good
• 50:38solid getting you
• 50:40to the getting you to
• 50:42speak, Kim. So getting the
• 50:43folks you know, for the
• 50:45folks that do this work,
• 50:47being available to do this,
• 50:49for us, you know, making
• 50:51videos.
• 50:52You know?
• 50:54I don't care how played
• 50:55out you think some of
• 50:55this stuff is. Making a
• 50:57good short video about Psilozine
• 50:59and how to dress a
• 51:00wound, how to do basic
• 51:01simple stuff,
• 51:03Man, that stuff's
• 51:05on point. It's one less
• 51:06video we have to make.
• 51:08Mhmm. Right? Mhmm.
• 51:10Like, it's it's huge.
• 51:12And, like, we can make
• 51:13those videos for free at
• 51:14Yale, for example. We did
• 51:15it for endocarditis.
• 51:16Right. And and, like, we
• 51:18you know, that kind of
• 51:19relationship is, like, we utilize
• 51:21our our research our our
• 51:23power at the research institution,
• 51:25and you don't have to
• 51:26pay for that.
• 51:27And that's lovely.
• 51:29Filter, that was the the
• 51:31Filter magazine. That was the
• 51:33place I wrote the Mhmm.
• 51:35Wrote the write up about,
• 51:37my wounds. Right. But I
• 51:39think it's time for me
• 51:40to write another another
• 51:42you know,
• 51:43some other piece
• 51:45that has accessibility
• 51:47outside
• 51:48of journal systems.
• 51:50People need to see this
• 51:52kind of information,
• 51:56in a nonacademic
• 51:57format.
• 51:59I think that's the most
• 52:01important things.
• 52:02And I think, you know,
• 52:04we saw this a lot
• 52:05with the HIV world.
• 52:08And, you know, one of
• 52:09the things that was important
• 52:10is sort of center grants
• 52:12and grants that have longer
• 52:13histories
• 52:14that can involve people with
• 52:16lived experience over
• 52:18periods of time, often on
• 52:20community advisory boards.
• 52:22And that sort of consistent
• 52:24participation
• 52:26helps to mitigate
• 52:28what
• 52:28Regini was asking about, which
• 52:30is sort of the up
• 52:31and down cycle,
• 52:32especially of NIH grants where,
• 52:35you know, the grant could
• 52:36be three years or the
• 52:37chance that you're gonna get
• 52:39the grant is ten percent
• 52:41or five percent.
• 52:42NIH grants are much different
• 52:44than the grants that come
• 52:45to states or come to,
• 52:47organizations
• 52:49that, you know, are are
• 52:50essentially targeted and and are
• 52:52are more or less guaranteed.
• 52:54So
• 52:54NIH grant participation
• 52:56is really unique. It needs
• 52:57to be treated as such.
• 52:59And so maybe participating in
• 53:01an Empower U or a
• 53:03p thirty or a center
• 53:04grant,
• 53:05in addition to one offs
• 53:07that,
• 53:08you know, allow for
• 53:10continuous support and then additional
• 53:13support.
• 53:14I just wanna highlight,
• 53:16before we leave, well, first,
• 53:18I wanna say thank you
• 53:19to to Kim and to
• 53:20Louise. This has been fantastic.
• 53:22Really got my mind thinking.
• 53:24Great work, and I know
• 53:25that you'll continue to to
• 53:27inform us about this.
• 53:29There is an ongoing study,
• 53:31and it's calling for experts.
• 53:33Ragini, do you wanna
• 53:35say a little bit more?
• 53:36Sure. Thank thanks so much.
• 53:38This was such a great
• 53:38session.
• 53:40I'm Raugani Jawa. I'm at
• 53:42Pitt.
• 53:43We think a lot about
• 53:45sort of optimal management of
• 53:47xylazine wounds,
• 53:48and we have a Delphi
• 53:50study,
• 53:51that we're actively recruiting
• 53:53clinicians and researchers,
• 53:55to participate
• 53:56so that we can help
• 53:58come up with guidelines
• 53:59on pain management for people
• 54:01with silosine associated wounds, knowing
• 54:03how important pain management is
• 54:06for effective
• 54:07treatment of these wounds.
• 54:09So if anybody is interested
• 54:11in participating,
• 54:13here's a QR code and
• 54:15a a red cap link.
• 54:16We'd be happy to put
• 54:18the link,
• 54:19for you to participate. But,
• 54:22the the this was a
• 54:23really timely
• 54:24session, and I think, hopefully,
• 54:27this this particular study can
• 54:28get get us closer to
• 54:29providing
• 54:31best management medical management,
• 54:34for patients with
• 54:36xylazine wound associated pain.
• 54:38So Great. Yeah. Thank you
• 54:40so much. Thank you, Louise.
• 54:42Thank you, Rodney.
• 54:44I just Go ahead, Louise.
• 54:45Wanted to say one more
• 54:47thing. If you would just
• 54:48be on the lookout for
• 54:49any positive change groups coming
• 54:51out
• 54:54of National Survivors Union or
• 54:55North Carolina Survivors Union,
• 54:58these are online groups,
• 55:00that are just designed
• 55:02to, like,
• 55:04work with people with lived
• 55:05and lived experience lived and
• 55:06living experience.
• 55:08People using drugs, people with
• 55:10pain, people with pain management
• 55:12needs.
• 55:13It's just a a basic,
• 55:15you know, you can come
• 55:17here. This is not twelve
• 55:18step. It does not resemble
• 55:19twelve step. We do not
• 55:20talk about time. We don't
• 55:22talk about anything like that.
• 55:24If something gets brought up
• 55:25that feels like twelve step,
• 55:26we will get rid of
• 55:27it.
• 55:29We are equally sensitive
• 55:31to this needing to be
• 55:32its own own thing. So
• 55:34I just wanted to throw
• 55:35that out there. Thank you.
• 55:36Thank you very much for
• 55:37mentioning it. Thank you everybody
• 55:39for joining. And just a
• 55:40reminder, we will have a
• 55:41session again next Tuesday
• 55:43on acute pain management in
• 55:45individuals who are receiving
• 55:47opioid agonist treatment that Michelle
• 55:49Benora
• 55:50and, Melissa Weimer will be
• 55:51with. So thank you, everybody,
• 55:52and have a great day.
• 55:54Thanks so much. Have a
• 55:54great weekend. Thank you, Louise.
• 55:56Hi, Kim. Thanks for I
• 55:57love speaking with me. Okay.
• 56:01We'll talk soon.
• 56:03Yep.