Engaging People with Lived Experience of Substance Misuse to Strengthen Prevention Efforts

Engaging People with Lived Experience of Substance Misuse to Strengthen Prevention Efforts


[Michelle Fry-Spray]: Hello, everyone. I hope you are having a wonderful day. The title of today’s webinar is Engaging
People with Lived Experience of Substance Misuse of Strengthen Prevention Efforts. And just as a reminder, today’s presentation
was developed under the SAMHSA CAPT task order and the views expressed today do not necessarily
represent the views, policy, and positions of SAMHSA or the U.S. Department of Health
and Human Services. Again, I’m very pleased today to be presenting. My name is Michelle Frye-Spray. I’m the Associate Coordinator for the CAPT
West Resource Team. We are located in Reno, Nevada and I am pleased
to be presenting with Gary Langis who is in Massachusetts and Gary is a Training and Technical
Assistance TA Provider for the Massachusetts Technical Assistance Partnership for Prevention,
also known as MassTAPP, providing TA on substance abuse prevention to communities across the
Commonwealth. He’s worked in the field of overdose prevention
since the late eighties collaborating with partners across sectors, across the continuum
of care, working to prevent opioid overdose. It’s been a real pleasure planning with
Gary for this webinar. We’ve been able to share some of our experiences,
very different experiences across the continuum of care, but equally valuable. And it has reinforced for me the importance
of building relationships, new relationships as we do this work. So, it’s been a real pleasure. Do you want to say hello, Gary? [Gary Langis]: Afternoon folks. It’s my pleasure to be presenting with Michelle
today, or facilitating with Michelle and I’m looking forward to hearing your questions
and listening to the panel later on. [Michelle Fry-Spray]: Thank you, Gary. So, today we are basically, for a short time
Gary and I are going to be your guides. We’re going to be going through the current
prevention landscape and talking about that for a minute. Then we’re going to examine the roles of
what lived experience means in substance misuse prevention efforts. Then we’re going to take time to critically
consider how we can engage people who use drugs in our prevention efforts, and how we
can do that with respect and with a growing level of cultural humility and competence. Then we’re going to get into hearing from
the presenters today, hearing about their lives in the field of working with folks,
with substance use experience with using drugs and then we are going to look at how that
applies in your world and in your work. So, by the end of todays’ webinar our aim
is for you to be able to identify the considerations for building mutually beneficial collaborations
with people with lived experience of substance misuse, describe strategies for how to effectively
engage people who use drugs in your work, and then take away some of the specific examples
of how others have engaged people who use drugs in their prevention efforts at the state
and local levels. We know that most of the folks here on the
webinar today have some rich experience as an audience, working at the state level and
this webinar will hopefully just enrich what you already are doing. And we’re going to get to experiences from
our panelists today. I’m really excited to be introducing them
here very shortly. So, we are setting the stage today and as
part of this I was thinking about the many conversations we’re starting to have or
we’ve been having at the CAPT and also with many of you about the current landscape of
prevention and the fact that for some of us the landscape may be very new, it may have
some new features, and others not so much. Personally, one of my favorite ways of exploring
a new landscape is by hiking, or if I’m in a new city by walking. Prior to going on a new adventure though I
always read a guidebook, or go online and do some investigation, but you know, I also
don’t feel safe or comfortable enough to go out and do it on my own. And so I always want to have someone there
who has actually been there, as we talked about today, someone with real experience,
someone as a guide who can share what they’ve learned from walking the path or the city
block, pointing out subtle features or the go-to spots that I might overlook. So, today we’re going to take a view of
the current landscape and then lean in and learn from our cultural brokers so that we
can do this work with people who use drugs more competently. I’m sure many of you, if I ask you what
the changes you’ve seen in today’s current landscape would echo kind of these three areas. We’re seeing a focus now on the prevention
of opioids, the reemergence of heroin from many years ago. I know that heroin has always been around,
it’s continued to be, but we’re seeing larger numbers of, larger prevalence of heroin. And we’re also seeing the availability of
increasingly potent drugs such as fentanyl. The call for a comprehensive set of prevention
strategies with selective and indicative prevention strategies really taking on more significance
as we’re working to stem the tide of opioid overdose and save lives with the distribution
of Naloxone. Other features are the need for building effective
relationships with new partners so that we can actually do this work and change the tide of what we’re seeing. Many of you have heard this story of prevention
is a river. It’s interesting. I’ve heard this analogy now in many areas
and I think it’s because it’s become more relevant to our work in the opioid crisis
and I know many of our communities if we think about some of the just adversity that they
face with the environment. There’s been flooding and hurricanes, and
I know that here in Reno last year we had an incredible year of snow and rain which
caused the Truckee River to just swell and cause potentially very dangerous conditions. So, as I was thinking about the river of prevention
here and the opioid problem, I thought about that flood and during the flood, public safety
officials used universal strategies, such as public education messages, road signs,
and fencing, to warn everyone about the dangers of the river. The county also offered more selective and
indicated, more selected services, such as sand bags and emergency housing to those families
that were at greater risk of being impacted by the flooding. And then we had the first responders who were
on the ready to offer rapid response to those who had somehow gotten into the river for
whatever reason, kayaking, swimming, but they were there ready to help them navigate their
way out of harm. So, similarly I’m sure you can see the analogy
with our work today in our comprehensive prevention efforts, and I think the importance is that
we do need to be comprehensive in our work, working continually to implement universal
prevention strategies, as well as selective and indicated, prevention strategies. Also, knowing our partners is becoming increasingly
important. And knowing our partners in treatment and
recovery, not so that we can go in to do that work, but so that we can provide those warm
handoffs where needed. And so this is just one example of the many
partners that are important to our work. I’m sure that you have already been engaging
with and I know that this takes a lot of work, a lot of time to build those relationships,
and we have a handout for you that we will be providing that will offer you some tips
hopefully in that area. Just to hone in, today we’re looking at the
role of lived experience. Lived experience means, been there, done that,
firsthand knowledge, personal stories. And today we bolded the top bullet: Looking
at the individuals currently using or misusing substances are those folks that we’re looking
at today and learning how to better engage them in our work, and why are we doing, you
know focusing in this effort of outreach to people who use drugs? And I would say the answer to that is because
of this increase focus on selective and indicated strategies. And here we see the IOM Continuum of Care
that’s been around since 1994 and then in 2009 the promotion was put across as a crosscutting
sector across universal, selected, indicated treatment and maintenance. And what I think you’ll find and hear from
the presenters today is that health promotion takes on an even more poignant role in doing
outreach and working with people who use drugs. And helping them to reflect on their own health,
and promoting their own health wherever we are across the Continuum of Care working this
is something that we can do with whomever our clients are that we’re serving. And of course today’s presentation is really
focusing on working with those people who use drugs before diagnosis. So, we’re not talking about including them
in our recovery or treatment efforts, but we’re talking about including people who
use in our prevention efforts. And now, Gary, I’d like to turn over the
webinar to you to go a little bit more into what we mean by “lived experience”. [Gary Langis]: Alright. So, I’m going to go over some of Michelle’s
biggest slides and discuss the umbrella of people living under that lived experience,
that are living under that umbrella: you know, the people in treatment and recovery, the
people who use drugs, their families, their friends, other contacts that they have, other
connections they have. Every one of these folks have information
that we can use to inform our prevention efforts. What we’re focusing on a lot today is people
who are currently using drugs, people who may be in the contemplative stages of change
where they’re not thinking about treatment, they’re not thinking about recovery. They may be thinking about like, you know
their immediate needs, which could be . . . it might not be like treatment. It might be a peanut butter and jelly sandwich. It might be one of the things you say, “Well,
that’s not important to their recovery.” It’s important to that person and we want
to get the voice of that person. We want to hear their voice. We want their input. They’re so important to have at the table. I know the panel will be discussing some of
this stuff later, how they engage these folks, but their voice is powerful, it’s strong,
and this is how we stay up with the current trends. I could explain all day what heroin use was
like in the sixties, and the seventies, and the eighties, but today the trends are different,
the drugs are different. We’re going through a thing in the United
States right now with heroin in particular regions of the country, heroin being replaced
with fentanyl. And it happened gradually. It happened like the heroin supply being tainted. What we’re seeing up here in New England
right now is ninety percent of the heroin that has been confiscated has some taints
of fentanyl in their mix. Some of it’s one hundred percent fentanyl. So, we want to know the current trends and
I’m not going to get that by going back and seeing what was going on with heroin supplies
in the sixties. I need to know now and all the players at
the table, all the players: law enforcement, first responders, treatment folks, people
who are in recovery, people who are currently using drugs. We can get all kids of information to find
out what is going on out in the street. What’s happening now, not yesterday, but
what’s happening today? So, that’s why all of these voices are extremely
important. So, we have to really get a many voices at
the table as we can. [Michelle Fry-Spray]: That’s so true, Gary,
including the people who use drugs. [Gary Langis]: You know what? I’d like to say especially the people who
use drugs. I do a lot of working with law enforcement
and you know when I started to realize that we had the same customers. So, there’s a lot of interconnect and we
all get some great information from folks that use drugs, and they’re an important
part. I know any program that I’ve ever worked
on, been involved in working with folks who have used drugs, they provided me with some
valuable information. They provided me with information that I wrote
grants and I got funding for, and I was using their knowledge. So, they’re part of that process and you
know, a lot of times in the past I used to try to get money so I could pay for some of
these folks because I know when we sit at the table, when I sit at any table, I know
usually I’m getting paid for it. Whereas a drug user, they don’t have it like
that. They’re not getting paid by any organization
or anything so, but it’s important to incorporate them. We did this with HIV, with our planning groups. We engaged folks who were actively using drugs. They sat at the table with the planning group. They were paid a small stipend by the HIV
planning groups. They were given a hotel room maybe too, you
know so they could be at the meeting. They were provided transportation. You know, sometimes we have to like, you know
go that way. [Michelle Fry-Spray]: You know, Gary, I think
we have a question and I would like to respond to Sue right now. Yes, when we’re speaking about people who
use drugs we are speaking today specifically about people who use prescription opioids,
and/or heroin, and we’re focusing really on the opioid use problem today. And so, Gary, can you tell us a little bit
about where this “nothing about us without us” phrase originated? [Gary Langis]: Yeah. The phrase originates from the Disability
Rights Movement and it emphasized the importance of listening to the voices of the people who
were affected by particular decisions and using those voices in making decisions at,
you know to be at the table. If you think about the identity that you hold
closely to you, do you want other folks that have not connection to that identity making
your choices for you? Do you want them talking and creating policy
for you, or would you like to be part of the voice? And they’re an important part of the process. You know? And that’s where the, “Nothing about us
without us,” phrase really originated back some time ago with the folks with disabilities. [Michelle Fry-Spray]: So, Gary, can you give
us one example of how you’ve engaged people in your prevention work, who use drugs? [Gary Langis]: Yeah. Alright, for many years I’ve been running
HIV prevention programs, harm reduction programs, and it was like incorporating those folks. You know, I was fortunate enough to get funding
where I could pay a stipend to folks to come in on the ten groups. Like this is probably the mid-nineties around
overdose prevention, Hepatitis C, and HIV prevention. And so I was able to pay a small stipend,
but it was providing the information and listening to the folks in the room because I was outnumbered
by folks who were currently using drugs. So, they were really important to take the
messages that they learned from some of these groups and share them with their friends. They were important when we were moving towards
some harm reduction strategies. And like naloxone distribution, it was really
important to get them involved really early, early on because we recognized that those
were the people that were the majority of the time the first ones that could respond
to their partner or loved one who was overdosing. So, I think a lot of that, like they were
involved in the distribution. They were involved in, they were key stakeholders
if we were targeting a tent city where there was a lot of drug use. We’d get the gatekeeper of that community
and they would give us permission to like – you know, we’d train them and they would
engage with all their peers that lived in the city. So, they were extremely important to get to
the people who were impacted by overdoses now, immediately. And again, you know, under that umbrella with
first responders, with law enforcement, with treatment folks, there’s always a space
where like we can do it like some sort of an intervention, you know provide it to like
a parent of a loved one that uses opioids. And doing a lot of the – one of the emerging
best practices right now, post overdose visits. Like it’s first responders that might be
a harm reduction person that goes with the first responders to the house and talk to
whoever is in the house. And most of the time, that’s a loved one
of the opioid user that we can provide information to them and it’s just word of mouth. I mean, I know when we first started doing
outreach that was our biggest thing, you know word or mouth, word of mouth, and you know
we didn’t have big billboards. We didn’t have any blinking signs and it was
. . . so these folks that we do connect with inside houses, or inside tent cities, it’s
them telling other people and it just keeps going on, and on, and on. [Michelle Fry-Spray]: So, Gary, I think you’ve
really touched on some of the opportunities for engaging people who use drugs in prevention
efforts. Do you want to add anything else as we move
forward here on this topic? [GARY LANGIS]: Yeah, if you’re working with
youth, if you’re working with anybody we want you to – you know we want you to invite that
group into the conversation. And when we’re working here under that umbrella
like we were talking about, there’s got to be a place for like a warm handoff where like
if I’m working with somebody that’s say in precontemplative stages of change and all
of a sudden they make a decision to, “Hey, listen. I want to explore like medically assisted
treatment. I want to explore other options.” You know, that’s where like the warm handoffs
can occur to like, you know, other members of this, you know your group. Even if it’s folks that have – they’re
doing treatment and they have recovery coaches. Those are the handoffs that we can provide. [Michelle Fry-Spray]: And I want to get to
some of the focus groups, even in our prevention efforts that are really trying to, you know
determine what the needs are, people who use drugs, so that we can begin to build that
relationship in a very large general way that focus groups are being used and just raising
awareness about what substances are out there on the street. [GARY LANGIS]: Yeah, and you know exactly,
that’s what – that’s some of the things that we worked on, maybe two, maybe three
years ago now with finding, you know going into some communities heavily hit by opioid
use up around here. And we have like Merrimac Valley, which is
includes Lawrence, and Lowell, and Haverhill, and we were able to go into those cities,
and Worcester, and Nashua, New Hampshire to do some surveys with drug users. And even go as far as getting some of the
product so we could have it tested and that’s when we found the fentanyl was present in
so much of the product that was out in the street. Yeah, we want to know like what’s going
on and what are the trends going to be, and where are they going to lead to. And our worst fears are coming to fruition
now with a lot of fentanyl, but it was great information to get, but we had to go right
to the source. [Michelle Fry-Spray]: And it looks like also
educating, working with people who use drugs to educate people in the health care and treatment
sectors about, again what their needs are and where the gaps in services might be. That would be helpful. I wonder if when we hear from the panelists,
maybe you could speak to some of these issues as well and how you’ve engaged folks who
use drugs in your efforts, particularly around the healthcare piece. I’m really interested in hearing more
about that. Gary, can you also talk about your history
there with, a little bit with reaching out, with engaging the population example here
from the HIV prevention? [GARY LANGIS]: Yeah, and these were horrible
years back in the eighties and early nineties but we had groups like Act Up, that would
come out and just be a voice. And they were the population, a lot of the
gay population, a lot of folks in the drug using community. I mean I know – I’m talking with you know
experience on the East Coast and I know it’s a little different out West, but they did
some of the same things because we were copying each other back then. [Michelle Fry-Spray]: And I think you hit
upon an important point there, Gary, is that it’s about not necessarily doing that exact
work, but transferring those skills and those experiences to our work in prevention and
to the populations that we’re working with and the audiences that are within our scope
of work. So, many others may not be working with the
HIV population expressly or working on the West Coast, but learning from you, we can
apply these things to our own context. [GARY LANGIS]: And it is, and like right now
there are groups in New York, Vocal, it’s a drug using group. San Francisco, the San Francisco Drug Users
Union. Up in Seattle, People’s Harm Reduction,
and it’s peer led and they – I know, and Vocal is a really strong voice around housing
for folks who are using substances, you know getting a roof over their head. Look, it’s about like, you know the pursuit
of life, liberty, and the pursuit of happiness. Alright? Like we’re all, everybody’s entitled to
that, even a person who uses drugs. You know? So we want to like engage this population
and they’re the strongest voice for themselves. You know? A lot of times their voice is not heard. I mean there’s so much stigma involved. Early on in the AIDS epidemic: stigma, drug
use: stigma, and that stigma has been reinforced for a hundred years, and it’s not going
to disappear overnight. [Michelle Fry-Spray]: That’s so true that
it takes an intentionality, doesn’t it? First looking at ourselves, and then inviting
others to reflect on what does stigma mean? And I think you’re going to go a little bit
more into that as well, about how we can reduce stigma as part of reaching out to this population. So, would you like to tell us a little bit
more about the bullets on this slide? [Gary Langis]: Yup. And it’s connected with local organizations
that provide services for folks. And that’s like the harm reduction services
that might be in your community. That’s like the homeless shelters that might
have in your community, the treatment, the outpatient treatment, they all play an important
role because they’re our customers. So, it’s good to connect with these other
organizations that are doing the similar things. Like I know when I work with law enforcement
it always hasn’t been like an easy road working, but you know it’s gotten better. And like I said earlier, we all have the same
customers, but we also have the same goals, a lot of the same goals we just have different
ways to get there. And it’s recognizing who’s sitting around
the table, how we can use their strengths, and look at our similarities. You know I could sit at a table all day long
and look at my differences with somebody and we’re not going to get anywhere. You know, but if we can come to consensus
on some things that we both want. I know I want a healthy community. I want my grandchildren to be able to walk
down the street and not witness somebody shooting dope in their car. When I have people visiting from out of town,
I don’t want to take them into Boston to the Public Garden and have them witness an overdose
in the park. You know? Like I don’t want that. And I believe that same goal is like law enforcement
has, community leaders would have. That’s when we have to start putting our
listening hat on and listening to people that I’ve looked at as adversaries and being
able to hear where they’re coming from, being able to understand their culture a little
bit. [Michelle Fry-Spray]: And that idea of stepping
into someone’s shoes is so important. We also have a handout here available that
goes a little bit more in depth into outreach and engagement strategies and that will be
made available at the end of the webinar and in follow-up materials. So this idea, Gary, you’ve talked a lot
about building that relationship and the importance of including people who use drugs in our prevention
efforts. And there’s also this consideration with
balancing power because sometimes we might come in and be perceived in a very different
way from a person who’s using drugs and vice versa. So, how do we begin to balance that power
out? [Gary Langis]: Yeah, this goes back to a lot
of the stigma talk that we hear nowadays about this population, and I think when I was doing
– when I first started to work with law enforcement and the language when I go into the room was,
“Well, you know, these junkies don’t care about each other.” You know? And you know I have a different type of language. So, it was really like me changing my language
in describing “the drug using population” and “persons who use drugs”. It’s by presenting data at our meetings. You know and one of the big changes were when
we started to collect data through the Department of Public Health on overdose reversals and
who participated in the reversals of the overdose. And it showed that seventy-three percent of
the folks that reversed an overdose were either drug users or their partners. And believe me, this doesn’t happen overnight. These balances like it doesn’t change like
after one, or two, or three, or four meetings. This happened over the course of two years,
but that same Chief, after two years of presenting data to him, not correcting, not just coming
out and saying, “Listen, you can’t talk about that.” We did have some side conversations believe
me, but like not . . . like I respected where he was coming from because that’s where
he’s been coming from for decades. And that’s where law enforcement had come
from for decades. And they have their own culture, but it was
after a couple of years when we were doing a report and the Chief stood up and he said,
“Well, we haven’t arrested anybody from the drug using community in fifty-seven of
our responses to overdose.” That was like a change. He became like a champion and through that,
you know he’d go to Police Chief Association meetings, the language has started to change
in some places. We have so much more work to do, but you know
to change that balance it’s really addressing that stigma that everyone has experienced. [Michelle Fry-Spray]: One of the really important
things professionally, that I’m learning is moving from that very universal perspective
of prevention and being . . . that’s one of the strengths that we in prevention bring
is this data-informed perspective, the Strategic Prevention Framework. We’ve got cultural competency right there
in the center. You know, is that concept of building relationships
to be more data informed and having those champions work with us. And as part of that process I think, you know,
enhancing that person first language has been really important for me and thinking more
deeply about what that means and how that begins to build hopefully the respect. And it really is about putting people first. [Gary Langis]: And it has to come up, I believe,
in all the conversations we have, all the meetings we have. We always have an opportunity to talk about
this stuff and it’s something I’d be talking about in front of legislators, community meetings,
you know as many times as we can like do – we host a training, we do our staff trainings. You know, like it should be part of the conversation. Like it says here, “to understand the drug
use falls in a continuum,” and a lot of times we just want to get people from drug
use to treatment, and that is – there’s a long road sometimes between that, especially
for people who are using drugs. It could be a couple of years. It could be a couple of decades. [Michelle Fry-Spray]: And you know I think
this idea of training, getting an understanding of trauma. You know that’s something that we can do
and we have done with much of our work in prevention in training staff on what does
it mean to have a trauma informed approach to prevention so that we can understand the
process that people are undergoing as a result of trauma and their relationship to substance
use disorders or substance misuse. So, tell us a little bit about creating mutually
beneficial collaboration. I think we’ve already talked a good bit
about this and our presenters are going to get more into this, but Gary, it seems to
me that you’ve hit upon the first responders as being, you know key in how people who use
drugs can really – they’re the ones on the scene. Did you say seventy percent of the time they
are the first responders? [Gary Langis]: In the state program of Massachusetts,
that’s’ the numbers that they came out and I don’t have the numbers. That was the number back then. It was seventy-three percent of the folks
that reversed overdoses were persons who were using. The persons who were using drugs, or their
partners, or loved ones. You know so that’s why it’s really important
to like use everyone here. I do some post overdose work and we were over
to a house the other night and there was a young gentleman, Latino, had overdosed and
his father came in and found him. They did have Narcan because we had connected
with him once before. He did provide the Narcan. He called 911, and then we went over just
to check him out the other night, see how he was doing. You know, we talked and we had a pretty good
conversation with both his father and him about him not using alone, and his father’s
saying, “I’d much rather you use when I’m in the house,” because his father
was outside the house plowing snow and when he got in he heard the sound, he heard the
shallow, you know the gurgling sound and he ran into his son’s… And you know so that’s’ not the best,
you know that’s not – I really don’t want to encourage you to use, but if you’re going
to don’t do it along. And that’s like – that’s a harm reduction
message. [Michelle Fry-Spray]: And I think you really
hit on some important points there, Gary, about again, trauma that’s experienced as
well as the folks that are on the ground, family members, as well as people who use
to be those first responders and key informant. And I think we should probably move forward
now and get a little bit more input from our panelists. So, today we have a panel discussion that
we’re going to move into now and here more stories from the field. And we’re so pleased that these folks have
taken time out of their schedules to be with us today. We have four folks that are going to speak
and the first introductions that I’ll make are to Natanya Robinowitz and Bernie Lieving. And Natanya is a current consultant of the
Behavioral Health System in Baltimore and has worked in harm reduction for the past
eight years. She’s worked at the Baltimore City Needle
Exchange Program and most recently as a Behavioral Health System in Baltimore overseeing their
naloxone distribution program and Be More Power, a network of people who’ve been impacted
by drug use. And she’s currently on a Fulbright scholarship
in Catalonia studying the public health system for people who use drugs. So, welcome Natanya. And then we have Bernie Lieving and Bernie’s
an Overdose Prevention Coordinator for the Santa Fe Prevention Alliance out of New Mexico. He’s also a main consultant and trainer for
both SAMHSA’s grant to address prescription drug opioid overdose, or the PDO, and the
State Targeted Response grant in New Mexico. So, welcome, Bernie. We’re pleased to have you as well. We also have Jessica Cance. And Jessica, prior to joining the Texas Department
of State Health Services, Dr. Cance was the Interim Prevention Lead for the Texas Targeted
Opioid Response Project. She has over fifteen years of experience working
in adolescence including epidemiological research, program implementation, coalition building,
and national evaluation projects. Welcome, Jessica. And Alessandra Ross. Alessandra works as an Injection Drug Use
Specialist for the California Department of Public Health Office of AIDS where she coordinates
the state’s efforts to prevent HIV infection and improve the health and wellness of people
who inject drugs. Alessandra has worked in HIV prevention since
the beginning of the epidemic. Her previous experience includes managing
the training department at Gay Men’s Health Crisis in New York and assisting the harm
reduction coalition in establishing their training institute. So, thank you so much presenters and now we
are going to move forward. And I think we’re going to start off with
the questions here today to Alessandra. She’ll respond first, but what is one step
one can take to begin engaging people who use drugs in
prevention efforts? [Alessandra Ross]: Thank you, Michelle. That’s a great question and I want to answer
by saying that what we’re doing right now is a really critical first step, because it’s
just talking to colleagues about the importance of involving people who use drugs and people
who currently use drugs in planning and providing input and feedback because of all the reasons
that you’ve just outlined. But one of the things that happens in the
commercial world is that nobody puts out a new product without testing it with potential
customers. You know, they check for, “Is this the right
taste? Is this the right color? Is this the right smell to this new product?” And sometimes in public health or behavioral
health we’ll skip that step, even though it’s considered a best practice. We will skip that step and kind of when we
remind ourselves to do it, when we go to our colleagues and say, “Hey, you know we need
an advisory panel on this,” or “We need a focus group,” or “We need to start building
this program from the ground up with involvement of people who use drugs,” lots of times
people are like, “Oh, yeah, yeah, we should do that,” but sometimes there are additional
barriers like the belief that people who are currently using drugs are not qualified to
be part of an advisory panel for example, and people will sort of move towards, “Let’s
work with people who are already in recover,” and people who are in recovery are incredibly
valuable, and also people who are currently using drugs are incredibly valuable. So, making that case can sometimes be a challenge. And I think it’s one of the first steps. [Michelle Fry-Spray]: Interesting. So, both audiences bring value in different
perspectives, those in recovery and people who use currently. [Alessandra Ross]: Absolutely. I think those are sometimes really different
groups of people and they have different needs and they provide different kinds of help to
us as health professionals. [Michelle Fry-Spray]: Well, thank you, Alessandra,
for kicking us off with our panel with that thoughtful response that we can apply back
into our work, breaking down barriers. Would someone else like to respond with one
step that a person can take to begin engaging people who use drugs in their prevention work? [Jessica Cance]: So, this is Jessica and I
think even before having direct engagement one thing that I worked really hard from the
primary prevention side was making an effort to attend conferences and meetings what were
aimed towards services for people who use drugs. So, for example Texas hosts a statewide neonatal
abstinence syndrome conference. So that I could hear the perspectives of the
participants, but also researchers and practitioners who work directly with people who use drugs. [Michelle Fry-Spray]: So, doing our homework
before we engage people who use drugs is what I hear you saying. [Jessica Cance]: Absolutely. [Michelle Fry-Spray]: Go, ahead please. [Natanya Robinowitz]: This is Natanya, I was
going to give a different example if you wanted to continue to address what Jessica had just
said. So, just to give a practical example of something
that we did in Baltimore, what I would say is that it really helps to organization around
specific projects or specific goals. So, last summer one thing we did was an event
in Baltimore on fentanyl. It was a community conversation intended as
a sort of two-way education. So, for us to learn about what was going on
in the community with fentanyl and the heroin supply and also to identify gaps in knowledge
and provide education to the people who came. So, that was an event focused on people who
use drugs. And without a super strong infrastructure
to connect with those people directly, we did a lot of presentations at Methadone clinics,
needle exchange programs, local homeless agencies, and we tried to make a lot of those presentations
about the event coming from other people who use drugs so that it was a peer to peer sort
of presentation of information. And at that event because we were bringing
in expertise of people who use drugs on the topic of fentanyl, which Gary had mentioned,
it changes so quickly, we provided transportation and stipends for people at the event itself. [Michelle Fry-Spray]: So, you’re touching
on some of what we talked about before with the fulfilling some basic needs of this population
as part of engaging with them. Great point. Thank you, Natanya. Okay. So, let’s move more into the issue of what
the greatest challenges are in engaging people who use drugs in prevention efforts and how
did you overcome those challenges. I think Bernie is going to weigh in on this
one first. [Bernie Lieving]: Good afternoon. You know I kind of want to say that I don’t
really see my work with people who use drugs as presenting great challenges. I really see it as ongoing relationship building,
about working in solidarity with people, and not making it about me or my agency, or my
agenda, or the agency’s agenda. And it’s really about working with people
in an ongoing basis where they are in their lives, to support them in their work with
peers and other people that I might not be able to reach like drug dealers in their communities. We’re the fifth largest land mass in the
United States and have about 2.1 million people. So there’s a lot of decentralization of
this work and it has to be very localized. A person who used drugs in Northern New Mexico
is different than a person who is using drugs in say Las Cruces, for example, down by the
Mexican border. So, I’m working with my collaborators and
partner agencies and individuals statewide to try to make this happen in local communities
so I don’t have so much of a centralized process for doing it. I also think it’s really important, something
that was brought up earlier about power differentials. I think it’s important for me and people
doing this work with people who use drugs to be very conspicuous about the power differentials
and referring to the people you’re working with as the experts in their lives and in
their communities and like you’re not the expert, that you work in collaboration and
in solidarity, using them as content and community experts in their neighborhoods, or their villages,
or their blocks. So, the other thing I think as Gary mentioned
earlier was being able to offer people stipends and realizing that they’re taking time out
of their lives. You know, either people with jobs, who are
in school, who are parents—so offer stipends to people who are your proxies in the community. And just to give you an example of what some
of the proxies in our communities are doing is they are going into the communities that
I don’t necessarily have access to and doing overdose prevention education and naloxone
distribution to their peers. So, I really acknowledge and see them as my
eyes and ears on the ground and getting to places that in my role as a professional,
I may not be able to reach. And really acknowledging that they are the
experts, again, many of whom have responded to scores of overdoses, who are really community
leaders that are looked to by the people in their community, who are from the communities,
and who aren’t maybe an outsider like I am if that makes sense to everyone. [Michelle Fry-Spray]: Well, you know it does
to me, Bernie, and what really, I think you put the spotlight on for me is that people
first—that folks have lives of their own, they’re busy, and that people who use drugs
that’s not everything that they are. Would others like to weigh in on this question
about the challenges of engaging folks? [Alessandra Ross]: Yeah, this is Alessandra. One of my biggest challenges prior to the
work that I do here was I worked as a consultant to drug treatment programs and homeless service
programs that wanted to move away from an abstinence only model to a harm reduction
model. And there’s a lot of change that has to
happen along with that. And one of the challenges was just having
people have a person first perspective and having people understand that people who are
currently using drugs are fully competent and deserving of taking leadership roles around
this. And that’s a big intellectual leap for a
lot of folks. So, one of the frameworks what I found really
helpful was the one that Gary talked about, which came about from the Disabilities Rights
Movement: “Nothing about us without us,” but also what came out of Disabilities Rights
Movement was the Americans with Disabilities Act and the whole concept of people with disabilities
having the ability to work and function in all kinds of different environments with reasonable
accommodations. So, if you have a person on your advisory
panel who’s blind, you’re going to make sure that they get the materials in whatever
form they need it, whether it’s Braille or other forms so that they can read and fully
participate. And you do the same thing with people who
have a substance use disorder, or are using substances in a way that interferes with their
regular lives. So, when Natanya mentioned having transportation,
that might be a reasonable accommodation. What Bernie talked about, about paying people,
that’s not a reasonable accommodation. That’s just a straightforward and fair thing
to do. But I’m sure people in the audience have
worked as clinicians with people who use heroin or other opioids and have found that 9:00
A.M. appointments are not a good way to start and the perhaps a 2:00 P.M. appointment is
a good way to start, and maybe reminders are a good thing to do. So, all of those things can really enable
people to be fully participating and making decisions about their lives. I think once people wrap their head around
that they’ll go, “Yeah, I get it. I think, yeah, we can have a diversity of
opinion in this program that we’re building.” [Michelle Fry-Spray]: I think that’s a very
helpful point. They take that idea of engaging this population
to a whole new, in our work, to a whole new level of areas to consider their needs rather
than our own systems and structures first. [Alessandra Ross]: Yeah, I think that’s
a really good way of putting it because we do tend to honor our systems and structures,
because they’re convenient to us, not because we love them. [Michelle Fry-Spray]: Would anyone else like
to weigh in on this question? [Natanya Robinowitz]: Sure. This is Natanya. I also just wanted to add thinking about challenges
in representation of people who use drugs in this type of work and just as we as bureaucrats
to be really intentional about making sure that we’re engaging and representing people
of color, because you know historically communities of color have been hardest hit by both drug
use and especially drug policies. I think it’s going to be really hard for
us in programming to address some of the harms of drug use without taking into account the
harms and the mistakes that we have historically made in this field. So, you know, one of the challenges in doing
this work is just the challenge of being intentional and not to sort of further marginalize voices
that have been historically marginalized in drug use and drug policies. [Michelle Fry-Spray]: Very important point. Thank you, Natanya. We do have another question here. What were you able to accomplish by partnering
with people who use drugs that you wouldn’t have been able to accomplish otherwise? And are we hearing from Jessica on this one
first? And if I’m wrong, just step right in. [Natanya Robinowitz]: I can start. This is Natanya. [Michelle Fry-Spray]: Great, thank you. [Natanya Robinowitz]: In short, things we
are able to accomplish in Baltimore was the ability to get insider information as has
been mentioned a bunch of times about drugs. The ability to get reliable information and
to give reliable information. I’ll give an example in a second. Availability of services off hours. So, thankfully, none of us work 24/7, but
we’re not in the community when an overdose happens, or where someone needs information
about drugs, but people who use drugs are often with other people who use drugs and
can provide information, as Bernie mentioned, can be on the spot when naloxone is required. And community buy-in and trust. So, the specific example I wanted to give
is in Baltimore, we do a lot of street outreach with giving out naloxone in areas where there
is a lot of drug use and drug selling. Something that’s essential right now for
overdose prevention is being able to talk to people about fentanyl and give really up-to-date
information. We know that drugs that are being sold on
street corners are different within weeks of each other from the same exact person. So, to be able to get information on what
drugs have fentanyl in it, what it’s being called and where it’s being sold. So, I, Natanya as a public health bureaucrat
would never have gotten that information and then even if I had gotten it, you know, no
one would listen to me if I were to share that information. So, when we work with people who use drugs
and we work with a network of folks who use drugs, they’re able to get that information
about what’s being laced with fentanyl, what it’s being called, where it’s being
sold, and to get that back out to people because we know that naloxone is one part of overdose
prevention, but also there’s so much more. And so, getting the information and getting
it back out could not be done without working with people who use drugs. [Michelle Fry-Spray]: So, it sounds like having
that comprehensive approach and even with a rapid response is really key, especially
when we’re talking about such a deadly substance as fentanyl. [Jessica Cance]: This is Jessica. I did have an example. So, one of the things in Texas that we’ve
worked on, again more in terms of primary prevention is agreement on the purpose of
the Prescription Drug Monitoring Program. So, in terms of primary prevention we see
PDMP as this critical public health tool to reduce over-prescribing, but really in engaging
individuals who have a history of opioid misuse, we’ve talked a lot about how using the PDMP
could actually increase the likelihood of individuals being cut off from prescribed
opioids and then turning to illicit opioids like heroin. So, for us in Texas, prescriber registration
and utilization isn’t mandatory yet. So, one of our state-level activities has
been to fund a marketing campaign and through our conversations, what we started doing is
being a lot more intentional about the images and messages that we’re using in the campaign
so that we’re avoiding stigma and presenting the PDMP less as a “gotcha” tool and more
as truly a public health tool that can be partnered with SBIRT and other things. [Michelle Fry-Spray]: Thank you for taking
us back to kind of that universal picture there of what we’re doing with the PDMPs and
how they might be used in a different way. Thank you. Other thoughts before we move on? [Bernie Lieving]: This is Bernie. I have just one quick one if I may. [Michelle Fry-Spray]: Absolutely. [Bernie Lieving]: Okay, in some of my work
with people who use drugs and doing overdose prevention education and naloxone distribution
in one particular zip code in Santa Fe County since last June, they have reported six reversals
to me from naloxone distribution and I would never have been able to have the reach that
they had into their community and actually have people use the medicine to save people’s
lives. [Michelle Fry-Spray]: That says a lot. Yes. So, they are key to the work you’re doing,
in saving lives. It makes sense to me. Other comments related to this question? Bernie, you also had the lead in the answering
our next question in terms of what tips would you give others looking to engage people who
use drugs in prevention efforts? [Jessica Cance]: Actually, I think it was
Jessica. [Michelle Fry-Spray]: Absolutely. [Jessica Cance]: Okay. So, for me I think my closing thought is that
the Strategic Prevention Framework is anchored by cultural competency and I think that we
really have to practice what we preach when we’re engaging people how use drugs. Personally I prefer to use the term that was
phrased earlier of ‘cultural humility’ because as Bernie was noting earlier, we need
to acknowledge that we can learn about other cultures, but if we’re not a member of that
community we can’t assume that we know everything. So, I think what we have to do is become comfortable
having a conversation with partners who have different paradigms and I don’t think that
means that we have to change our belief systems. So, we know primary prevention works and that
it plays this critical role in the behavioral health continuum, but you have to be willing
to find a middle ground which often means compromise or deference to individuals who
have lived experience. [Michelle Fry-Spray]: Good point, Jessica. I think it’s so important that the point
that you make is that we don’t have to give up our perspectives or beliefs to hear others’
perspectives. Yes, and thank you for bringing up the term
‘cultural humility’ again. It’s such an important concept. We can never be culturally competent I don’t
think in our work fully. So, who else would like to share their tips
for engaging this population? [Bernie Lieving]: This is Bernie. I could just real briefly say that it’s
one of my tips would be to just be quiet and to listen, and have people lead the conversation
in their own communities and I think that ties into cultural humility and also just
acknowledging the expertise that you’re getting from the people in the community. [Michelle Fry-Spray]: Great point. [Natanya Robinowitz]: And this is Natanya. And another tip I would add is to really seek
out ways to engage groups of people than building up one individual person. For many, many reasons we should be working
on building up communities and building up advocacy. Maybe that looks like advocacy groups. Maybe that looks like peer-delivered Naloxone,
or peer-delivered syringe exchange. But something I’ve seen over and over again
is people find this one person who uses drugs who’s passionate and speaks so well to the
issues. And then for one reason or another, good news
or bad news, that person drops off the scene for a short amount of time and then kind of
everyone’s back at square one. So, to put the pressure on one person, it’s
tempting because you can trust that one person, but it tends to fail. So, I would really encourage people, when
thinking about engaging people who use drugs, to really look at it from a community perspective. [Michelle Fry-Spray]: Other thoughts or comments
on tips that the panelists would give? [Alessandra Ross]: Yeah. Well, I think . . . This is Alessandra. I think that is a really good point about
cultivating communities and understanding that we have coming from substance use prevention,
or misuse prevention, there’s oftentimes . . . It can get sort of suspicious of people
within their communities. I don’t know if that’s the right word, but
people, places, and things, of kind of understanding people’s drug uses happening in a community. And sometimes that community is painted in
a negative way, but understanding drug using communities as potentially really positive
and often really positive. That people are living and using drugs together
and that those – there’s a lot of influence, and help and, people are there for each other,
and they’re also in each other’s way. And so just understanding that community perspective
is really helpful because I think especially if we do clinical work, too we often just
think of the person as an individual, maybe an individual with a substance use disorder,
or a patient rather than a person who has a life, and feelings, and friends, and abilities. So, that’s sort of just more along the cultural
humility track. [Michelle Fry-Spray]: Alessandra, I definitely
think of the word “resilience,” resilient communities when you refer to your tips there,
recognizing people’s resilience and reinforcing it. And I think that something that we in prevention
really work to weave into our efforts are the protective factors and reinforce those. Other feedback from the panel before we close
out today? Please feel free to make any last minute comments. [Alessandra Ross]: This is Alessandra. I’ll just throw out one that’s probably
pretty obvious to people, but like doctors, people who use drugs really like food. So, having food at your meetings really helps. [Michelle Fry-Spray]: Food. Yes, I heard that some people believe that
sitting down and eating and receiving food opens up the mind, not just the stomach, that
it creates receptivity. I like that idea. And I just want to say thank you so much to
you experts in the field for being on our panel today and we look forward to continuing
to build relationship with you moving forward in our work. And again, I just want to say thanks to everyone
who joined today. Yes, I think we’ve all learned a great deal
today from you and it’s such an honor to be able to moderate and hear the voices from
the field. We have, speaking of conversations and continuing
the conversations we have several resources to support your work out in the field. One of them is a series of videos called Prevention
Conversations and you can find them at this link and we’ll provide some follow-up information
in our follow-up to today’s webinar. We also have some handouts for you Words Matter:
How Language Choice Can Reduce Stigma, as well as our Collaboration Toolkit available
at the link provided. As we close out, I’d like to invite you
today to think about one action step that you can take now as a result of hearing from
our panelists today and partnering with people. Thank you so much and we are so pleased to
have you here today to have learned from our panelists. We really appreciate you taking time today. We wish you a great day and please stay in
touch with us about the work that you’re doing out in the field. Thank you all very much. Bye for now.

Leave a Reply

Your email address will not be published. Required fields are marked *