Michael Friend is the co-founder and CEO of the Minority Coalition for Precision Medicine, which aims to eradicate health disparities among minority communities and increase understanding of the benefits of precision medicine. As an emerging organisation, Friend works alongside faith-based communities as well as scientific organisations, such as pgEd, to help engage and open up important discussions surrounding genomics and precision medicine.
Please note the transcript has been edited for brevity and clarity.
FLG: Hello, everyone, and hello, Michael, thank you for joining me today as we shine a spotlight on some of the important social and ethical issues surrounding genomics. Today, we are joined by Michael Friend, the co-founder of the Minority Coalition for Precision Medicine. So, Michael, if you could just introduce yourself and tell everyone a little bit about your background.
Michael: Oh, absolutely. Hello, everyone, I’m Michael Friend. I am a founder of Minority Coalition for Precision Medicine and it’s great to be here. So, the Minority Coalition for Precision Medicine was founded by myself and Shakir Cannon, my business partner who recently a few years ago passed away from sickle cell disease. And so, we’re an organisation that focuses on engaging the minority community around genomics and really helping to ensure that the African American community is not left out in the conversation, or even some of the latest advances or research.
FLG: What was it like growing up for you? Did you have an interest in science?
Michael: Well, to be honest with you, I grew up in Baltimore, East Baltimore, a few blocks from John Hopkins Hospital. And so, I would have to say that I didn’t take much interest for the most part, because honestly, I was always afraid – I was having this conversation the other day with someone – I was just always afraid of Hopkins. And one of the reasons was we were told that they were doing research there, and there were like chimpanzees on the roof, or animals on a roof. And so that always bothered me, as I was always a little nervous about that. So no, I didn’t grow up thinking about science. I got involved a little later on in my life, due to my ex-wife having sickle cell disease. So, I got involved with sickle cell disease, very much engaging at a policy level and doing a lot of work with institutions, like NIH or the White House, having conversations at that level. And really focusing on the issues around sickle cell disease patients and their care for the most part.
FLG: What did you do prior to setting up the MCPM? What made you want to give this up and pursue a different career in engagement?
Michael: Well, before I was doing this type of work, I was actually doing something just the opposite. I was involved with real estate. And so I was, we were buying houses, fixing them and selling them. When the real estate market crashed, it was a pivotal moment. My ex-wife at the time was really struggling with sickle cell disease, and so decided to pivot and focus more on her health and her health outcomes for the most part.
FLG: How do you think attitudes towards healthcare and health equity differ among different groups?
Michael: Well, I can say primarily in the black community, it really ranges based upon the ages. When you talk to older African Americans – when I say older it could be generally 45 and older- for the most part, they tend to have a very negative disposition on healthcare as a whole. That particular group remembers, or is reminded of, Tuskegee and other types of events that have occurred. And so, it gets very difficult at that level. So, when you’re talking to the younger generation, for the most part, it’s sort of a different conversation because they don’t have as much history as to what has transpired in the past. And so, they’re more adapted to take in and listen to and be interested in these new technologies, such as CRISPR, which I have a lot of conversations about. And so, you don’t get the same conversations depending on the age group. I think it varies tremendously.
FLG: How do you think we can ensure that we acknowledge the past, but also still try to engage those older populations who have a negative association toward healthcare and science? How can we ensure that we don’t exclude those populations and still try to engage them?
Michael: Well, I think that is very important. I think honestly the way to do that is to certainly ensure that the institutions that are participating in these conversations have strong representation from African American institutions. That’s very challenging in this era of genomics because a lot of historically black colleges and universities have not been engaged in these conversations. And so how do you have these conversations with the older generation or older population, when they are not taking place at the same capacity within the minority serving institutions. And so that’s a huge problem.
FLG: What was it like setting up MCPM? What is the overall aim?
Michael: Well, it was not hard to set up because it was founded from the President Obama initiative around precision medicine. And so being a part of the initial launch at the White House motivated me to start the organisation because we saw such a great need. There are several aims we have, but one, I would say, when it comes to community engagement, is really strong engagement, meaning making sure we have the right people at the table – the right key stakeholders – and really have strong patient representation as well. So, we are really focused on patient engagement to make sure those voices are included and part of those conversations. I think that’s a very key group that are sometimes left out of the conversations.
FLG: How has the company evolved since it first launched? Have you seen more companies wanting to engage with you?
Michael: Yeah, to be honest, it has been very rapid. More recently, there has been a lot of companies. Quite a few have been reaching out. And I would think that that has a lot to do with the times we are in. I would look at it in two ways. One, COVID-19 has played a huge part. And the other, I believe, is certainly not totally related to health, but George Floyd. And so, there’s been a shift in terms of these companies and their position. And, particularly, I haven’t seen this part just yet, but I’m certain it is to come, but there’s going to be hopefully more investments in terms of engagement and collaboration, for the most part.
FLG: What are the challenges that currently exist in terms of ensuring the benefits of genomics are available for everyone?
Michael: Well, I think the challenges are where the research and where these breakthroughs are currently taking place. And so here, again, when you look at where it’s coming from, that’s a challenge. I’ll give you an example. Howard University is one of the universities that have a major sickle cell disease clinic or hospital, but you don’t see that type of engagement or that conversation taking place at Howard, even as it relates to CRISPR. And so that’s one of the areas in which we really got to work on and improve it to make sure that where these technologies and these advances are being made, that these types of resources are being shared amongst these institutions. And so that’s a challenge, I would say. For the most part, it is a very huge challenge.
FLG: How can we try and increase the accessibility of genomics? And how can we communicate with people who may not necessarily understand or be interested at all?
Michael: Well, I think awareness is key. And I believe that starting the conversations with the younger generation, starting the conversations even at a high school level, is going to be very critical to how this information is shared, and how rapidly it can move amongst the community. Because I believe that when you look at the younger generation, they use totally different platforms. They have a lot of technology. They’re very technical when it comes to a lot of things. But when you leave all that out of the conversation, then you’re dealing with a generation who is probably not as rapid and not as advanced. And so, it’s very important that we engage at a much younger age, I would think, and really start the conversations early so you can scale more.
FLG: What work are you specifically focused on at MCPM to address current challenges?
Michael: Well, just where I left off at. Absolutely, I think the Minority Coalition for Precision Medicine is really focused on next generation for the most part. So, we have a project we’re working on called Next Generation CRISPR Project, which really deals with high school students. And so, we’re working with a group out in California. Our project is called Ready Made. And so, we’ve already started to bring forth this conversation. And I think the exciting part about working with students in particular, is that the way they look at things is not the way we see things, and so it’s going be very interesting to hear their perspective. And more importantly, even though they’re young, they’ll more likely be the group that’s really impacted by these new developments and these new breakthroughs. And so, let’s get them started in the conversation early, and let them shape it as we grow and build. And so that’s where we’re really focused at right now.
FLG: You have a focus on CRISPR. Would you be able to expand on the work you are doing in this area?
Michael: Absolutely. I am an advisor on the CRISPRcon advisory committee. And so, for me, one of the most exciting turn of events was the meeting we had conducted at Howard University. And this was sometime last year. COVID had just started to hit, and we were planning an in-person event at Howard University, so it was very exciting. But unfortunately, due to COVID, we weren’t able to do to in person, but we did have some incredible virtual conversations, and they’re out there online. And so, as an organisation we will continue to focus on those types of conversations at our universities and other institutions. And one of the goals is really to get in, not just on the health side, but to really work on the agriculture side as well. There are a lot of HBCUs (historically black colleges and universities) that are doing work in agriculture. So, we want to ensure that those universities are a part of these conversations and a part of these advances. And hopefully, we’ll start to see more resources being dedicated to these universities, as we start to engage in these conversations.
FLG: How do you think that CRISPR can act as a turning point in terms of building trust?
Michael: Well, to be honest with you, it could be a game changer. CRISPR doesn’t have the history that some other research that has been performed has. And I think that if we start properly with the engagement, start properly with the proper investments, then I think CRISPR could serve as a model for how we should build, how we should collaborate, how we should engage and how we should look at equity, and all those things that are part of research and a part of these advances that could benefit minority communities as a whole. And so, I see CRISPR as vitally important to these conversations.
FLG: Would you be able to discuss the work you do with pgEd (Personal Genetics Education Project)?
Michael: Yeah, certainly. One of the most exciting parts working with pgEd is we did start with pgEd having these conversations with faith-based communities and faith-based leaders, so we’ve got very good conversations there. pgEd came to Baltimore a couple times to engage with the faith-based community. But I think as we move forward, particularly, I’m interested in the work with pgEd. They have a huge project around engaging teachers or high schools. And so, I think that in the future, we’ll do some collaboration in that area for sure. That’s a huge area.
FLG: What has it been like for you interacting with these big companies and researchers? And have you found that there’s a genuine interest in listening to what you have to say?
Michael: Well, I have found that the interest to listen has been genuine. But it kind of stops there. So, I think hearing us out is one part. But I think more importantly, it is certainly not up to me at this point to try to fix those problems. As these institutions look to engage the minority community, particularly around genomics, I really hope to see a shift in the way that they engage. Oftentimes, as you said – I’ll probably repeat myself a little bit – but as you said, primarily it was me coming in talking and sharing. And I like to continue those conversations. But I think moving forward, it’s more important for the institutions to really do the work. And that part is yet to be determined, to be honest with you. We haven’t seen it to the degree in which it probably can happen.
FLG: Yeah, I agree. I feel like there’s a lot of talk for not enough action, I suppose.
Michael: Yeah, a whole lot of talk, but not action. And action is primarily in the area of resources; it is the investments that need to be made. And so even from that standpoint, if we look at CRISPR, we’re at ground zero. I mean, we’re not there, we’re just not. And for the companies that are involved or are in these areas, I think they really need to look at where they are, look at their organisations, look at the diversity that already exists and look at where they need to make steps and changes because we’re still early in the game.
FLG: What would you say these organisations need to do?
Michael: When it comes to engagement – let’s go back to the faith-based community. If you’re going to engage and you, as an organisation, believe that the faith-based community is critical. We hear a lot of that. But when it comes to that type of investment, to have a stakeholder meeting of these very influential leaders, there’s no investment. And so, these pharmaceutical companies, or these institutions, are not willing – even at the national level, even National Institute of Health – they’re not willing to make the investment to have these conversations. And so, we have these leaders, particularly leading organisations that are a million plus member organisations, and you only want to take the time to make the investment to bring these folks to the table to have real engagement because somebody has to pay for it. And so, it’s not happening, right? So, it’s a lot easier to go to a local church and have some local conversation and say we’ve engaged, and so that’s been the thrust of it thus far. And I think it’s inappropriate to have these national initiatives, or these international initiatives, and have a community conversation at a local level. It is kind of like a joke to some extent. It’s a slap in the face, to be honest with you. So, I’m hoping that these companies really change their direction and allow us to engage at the proper level, meaning CEO to CEO. CEO of a pharmaceutical company, why aren’t you talking to the CEO of these faith-based organisations and vice versa? So, what we’ve seen is totally the opposite. We’ve seen these companies come in, have these conversations, and they’re so localised that they just have absolutely no impact at all.
FLG: Would you be able to discuss in a bit more detail faith-based engagement and how you’re using the church and faith to educate and raise awareness?
Michael: Yeah, well, I’ve always said this, to be clear, and this is true. What do we have in faith-based communities? You have researchers, you have genetic counsellors, you have doctors, you have nurses, you have individuals who suffer these conditions. And so, we have all the individuals who generally exist in our pool, why not start here? But here again, if you’re going to engage at a level that’s appropriate to the organisations, then you’re not going to see the benefits. And so, there are lots of problems. So, I think that what you’ll find in faith-based communities is everything you’re looking for. But at the same time, these churches do not have the resources to do the work. They’re still focused on blood drives, and things of that nature, not that that’s not important, but there’s been huge transitions and advancements in genomics, and they’re not even aware of what’s happening. So that’s a huge problem!
FLG: Within these faith-based communities – what are some of the concerns or experiences of these individuals?
Michael: Well, yeah, they’ve been crystal clear. Let me tell you what they say. First of all, they’re not totally interested to some extent. It is not that they’re not interested in working with me. They are not interested in a lot of these companies and what they have to say because they haven’t seen the investments necessary to even have these conversations. Let me give you an example. So, if I can bring together 10 faith-based leaders, 10 national organisations, probably approximately 10 denominations. One from each organisation in a round table, a $100,000 meeting. Here, you have the opportunity to talk to approximately 15 million people. So, who is going to spend $100,000 to have those conversations? We’ve been asking every year. Every year, I’ve been hoping to get this done. And so, to date, we have not been able to find an organisation. We’ve talked to people that could probably put out that kind of money, but they haven’t made the investment. And so, as you listen to the faith-based leaders, they can’t take these companies serious for the most part. So, that’s where the conversations are. They’ll send someone to the meeting, but more than likely, it is not going to be someone that can really make decisions on behalf of the organisations.
FLG: Mistrust is a major barrier to engagement, particularly in relation to these big organisations and commercial companies. How do you think that this can be improved?
Michael: Well, you have to have relationships! You have to have the relationships that I’m leaning towards or sharing about. The relationships between these companies and these CEOs, and I am not just identifying CEOs, but these folks who make decisions and guide and govern these organisations, have to engage these faith-based leaders at the same level. And so that’s what we’re not seeing. And until you start to see that, you really can’t expect for much change, because it’s going to be much of the same conversation. And so, once we break that barrier, you’ll start to see some real change and some real developments. Because here again, within these faith-based communities, you have a lot of leaders, and some of these leaders serve some of these same universities and institutions. And so, there are a lot of layers. And you’re going to find that there are a lot of connections and synergy when you start to engage at a certain level. To date, we haven’t seen that happen. And so, we’re still pushing for that as an organisation.
FLG: You lost your friend and co-founder, Shakir Cannon, a few years ago to sickle cell anaemia. What has it been like advocating without him?
Michael: Well, it’s been very difficult, to be honest with you. Shakir was dynamic in his ability. One, he was a master administrator. We would envision an event and we’d lay it out together, and he would execute every part of it to make sure that we had the right people at the right times. And so, from a pure administrative role, he was that person – he was the go-to person. So, not having Shakir around has been terribly difficult. He understood a lot from a policy perspective. He understood who we were talking to in the room, and the conversations and what the outcome should be. And so, he’s been a huge, huge loss, personally, and to the sickle cell community as a whole.
FLG: What are the future plans for MCPM?
Michael: Well, looking forward is this conversation with young people that we’re starting to take on. And so that’s going to be a real big deal, because we’re starting out in California with about 20 plus students that are very interested in CRISPR. And so, we’re going to grow from one region to the next. I believe that those folks will be the voice for CRISPR moving forward, not the only voice, but one of the main voices for CRISPR and this technology. And to say the least, I think they’re going to engage their parents, they’re going engage some of their family members to expand the conversation. So, we’re really looking forward to what their thoughts are and how they see CRISPR, more importantly.
FLG: Are they any other organisation and communities that you will be working with?
Michael: One of the organisations who is very interesting is the National Academy of Science and Entertainment Exchange. They are a great partner and so we are really looking to work with them more, because you talk about film, you talk about Hollywood, you talk about movies and about what is on these shows. And so, I think that one of the goals is to engage African American writers, directors to start putting more CRISPR in certain films, so that we can become more aware of the technology. I think that’s going to be critical in terms of how we use Hollywood moving forward.
FLG: Yeah, definitely. Film is a great platform to engage people and get people involved in those discussions.
Michael: Yeah, I think that is going to be critical and so I’ll be reaching out to him again. And we’ve done some work with them in the past. But I think now it’s time to ramp up again. So, we hope 2022 will be a breakout year!
FLG: What are the challenges that lie ahead?
Michael: So, one of the greatest challenges is funding. What I’ve seen in the past is there’s just not enough resources devoted to community engagement. And so, we need to really work with companies to have those budgets increased in that particular area, because it takes a lot of conversations, takes a lot of meetings, takes a lot of prep work. And so that’s been a hinderance. So, that’s an area where organisations need to really do a lot better, I would say.
FLG: Thank you so much for joining me today, Michael. It’s been really interesting, and I think these issues are so important as genomics moves forward and becomes more implemented into clinical care. And keep up the great work that you’re doing at the Minority Coalition for Precision Medicine!
Michael: Thank you so much Front Line Genomics, and say hello to Rich for me!
