Subscribe
Share
Share
Embed
This is the Leap Together Podcast, where we highlight top leaders driving breakthroughs in clinical research and life sciences.
You know, I mentor a family who really wanted to go home with their new baby, three week old baby in the NICU, and, they didn't realize that they could kind of advocate for themselves to be able to do that. And that there was just some hospital policy that didn't quite make sense for Prader Willi, that they didn't even know that they could advocate for that. So, I mean, I think in the smallest steps, we made people feel less alone, which is now a small step.
Laura:Hi. I'm Laura Brencher. I'm one of the hosts of the Leap Together podcast where we talk to leaders in clinical trials and patient advocacy to explore how medical breakthroughs come to life, but in truly equitable ways. And today's guest that I'm really excited about is Dini Rao. Dini, mothers like a rock star.
Laura:She's an advocate and board member for rare disease, a community organizer for undoing racism, and she brings joy to the world with her wine tastings. Seeing a gap in health outcomes for people living with Prader Willi syndrome, she actually created a task force to work with stakeholders on creating better equity and cofounded an affinity group for families of color called Colors of Hope. Dini aims to use her hosting and organizing skills along with her Harvard MBA to create more justice and joy in the world. So welcome.
Dini:Thank you. Very happy to be here. Thanks for hosting me.
Laura:We're happy to have you. And to start us off, could you just share a little bit about your journey into rare disease and Prader Willi syndrome advocacy?
Dini:Sure. It's a fairly recent one. I wouldn't say this has been a lifelong quest. I stumbled into it when my daughter was diagnosed with Prader Willi when she was almost five years old. And then I started getting introduced to the community, and at that time, it was online.
Dini:It was during pandemic years. And so we attended a virtual conference to just kind of learn as much as we could about the syndrome. And that's when I noticed that as we were showing up to these really wonderful resourceful, you know, world experts in all of the topics that the majority of people who showed up were white folks. Yeah. And so I kept asking myself, like, well, where are the people who look like me?
Dini:Where are the kids who look like my kids and felt that other people may also feel that way?
Laura:Yeah.
Dini:And so I started asking questions about what are the clinical trials look like and all this kind of stuff and came to learn that really there was a big gap. And so I kind of leaned on my organizing, my community organizing history to get together with some of the other folks who felt the same way. And we just decided, you know, what better way to solve the problem than to work on it ourselves.
Laura:Yeah. No. I love that. And you mentioned health outcomes and and gaps in health outcomes or access for across families living with with PWS. And so, yeah, could you share a little bit more about what those gaps in health outcomes or access might be?
Dini:Yeah. Well, the more I dug into things, the more I learned that part of the reason for our late diagnosis had to do with the color of my daughter's skin. That a lot of providers, that there's still literature out there that says that the way to diagnose Prader Willi syndrome is to look for blonde hair and blue eyes. And clearly, my daughter wasn't gonna look like that. Clearly, a lot of other children of color aren't going to look like that.
Dini:And so I really thought, aha, this could be the start of the problem is that we're missing a lot of diagnoses. And when you look at the folks who are in the databases and the registries, they nowhere match where The US census is. So we know that there's a huge gap of people who are not identified, who are not diagnosed. And then even amongst the people who are diagnosed, they're not getting into the support networks. And so that's when, you know, there's not even enough data right now to show what the health outcomes are, but we know when you compare it to so many other fields and places of health, not even just rare disease, that the differences are there.
Dini:So we need to uncover them.
Laura:Yeah. That makes total sense. And and it, you know, it's therefore important to kinda create spaces specifically for families of color within these conditioned communities. And I know that's something you're very familiar with, and I think that segues nicely into talking about colors of hope. And I I'd love to learn more about kind of when and and and more about why you started that and and how that looks day to day or or for families.
Dini:Yeah. So like I said, it was a group of us who are parents. None of us are, you know, professionally doing this. We're all doing this as volunteers. And we got together because we wanted community.
Dini:We wanted other folks to talk to our unique struggles and things like that. And in addition to community, we really wanted it to be action oriented. So working towards solutions and reminding folks who are the leaders in the industry that we are here and that it does matter that we're missing from clinical trials, trials, for instance, and we're missing from the data because then there isn't a good description of how do you diagnose, but also really how effective are all the treatments out there. We don't know any of that. So our group has mainly spread through word-of-mouth.
Dini:You know, we have some social media and things like that. And we're what's called an affinity group, which means that we're just like people who come together over some shared common interests. There are dad affinity groups. There are all sorts of affinity groups. And ours is for families of color.
Dini:So even if you're a white parent, but you parent a child of color and you're in the Prader Willi community, you are welcome as well.
Laura:Yeah. And
Dini:that's kind of the way it started. Now we we have, like, monthly meetings. Most of our stuff is virtual because everybody's kind of spread out all over. So Yeah. We do take advantage of Zoom meetings and things like that, and then we also try to have one meeting a month that's more of an educational resource webinar kind of thing.
Laura:Yeah. Oh, I love that. Yeah. And I think if it's virtual, that's increasing the access that's part of the problem anyway. So Exactly.
Laura:Yeah. I I I'm really curious what you think most families gain from colors of hope from conversations with them. What are the things that they they get most out of it? Would would be great to know that.
Dini:Yeah. Well, it's been a really beautiful ride because we we ask people as they come in, like, what are you looking for? And that's when we see, like a lot of times when they come in, they're just looking for community. They just wanna like share tips on like, okay, we know that diabetes rate is different in our population. So how is this treatment affecting your child specifically?
Dini:You know, these types of things. And then once they come in, we have some really beautiful reviews about how they have felt less alone for the first time. Yeah. You know, I mentor a family who really wanted to go home with their new baby, three week old baby in the NICU, and they didn't realize that they could kind of advocate for themselves to be able to do that. And that there was just some hospital policy that didn't quite make sense for Prader Willi that they didn't even know that they could advocate for that.
Dini:So, I mean, I think in the smallest steps, we made people feel less alone, which is now a small step. And in the bigger cases, I think there are real differences to outcome by sharing our best practices.
Laura:Yeah. I love that. And I know there's engagements with with kind of sponsors and pharmaceutical companies and and those driving research as well because to your point, it's not just about the kind of the morality of providing, you know, equal access to these opportunities like clinical trials. But if they're not reflected in the data, what is the treatment really doing for for specific communities as well? If you don't know that, we we don't know until it gets to market and people are already taking it.
Laura:So it's such a a critical thing that you're doing that I know as well is is engaging with that with that industry as well. And that's been that's how we met, and that's brilliant. And I'm I'm glad that we're connected because I've learned a lot already from our our conversations. But just talking about kind of clinical trials and research in in general, do families that you've engaged with usually learn about clinical trials easily? You know, if if they do, where?
Laura:I guess I'm really interested in, like, where that sits at the moment with a specific community you work with.
Dini:Yeah. That's such a good question because we recently did a listening report where we were looking and asking these types of questions to folks. Like, have you participated in a clinical trial? Not many of them have. Right?
Dini:Only about 20% of the well resourced, well informed group that we spoke to. Right? So we know there's so many other people out there that we're not reaching yet. And one of the biggest gaps for them is learning about the trials, but then also communication about the trials and then having access to them. You know?
Dini:It's why I love some of these options now to be able to do a virtual trial. I think that's definitely the next front. But the problem is if typically people are learning about clinical trials from the organizations, from the big you know, whatever the rare disease is, whatever the organization is, and then those organizations are not yet reaching the people of color and often not serving the people of color, then it kind of closes off those communication pathways so that the folks aren't learning about it. And to be honest, you have to remember too that a lot of the folks of color, not everyone, but a lot of them have tremendous constraints on their time and their resources. There's a huge caregiver burden.
Dini:There are a lot of single parents. There are a lot of folks working multiple jobs and things like that. So we don't have the time to always be on those message boards and reading and things like that. It's really up to us to go and find them and make it accessible to them and make sure it's in their language and make sure it's culturally appropriate and that we're building the trust necessary.
Laura:Yeah. I'm that last point is is is a major one. I know there's a lot in the industry that's that's moving towards different things that make it more accessible and, you know, supportive for caregivers as well, which is great. And I know there's a way to go too. But in terms of the trust piece of it, yeah, I know that that we were talking about systems previously when we've we've we've talked about kind of the system in itself might be, you know, in inhibiting a lot of of access, and and it definitely is.
Laura:So I'd love to talk a little bit about that and just get your thoughts about kind of the system as it is and that can relate to clinical trials and and just health care in general, but interested in getting into that a little bit as well.
Dini:Absolutely. And it's such a great question because it's not just one system. Yeah. Right? When you look at it, there's there's the health care system, which, obviously, there's a lot of studies about the implicit bias that doctors can have.
Dini:The huge difference it can just have if you have, for instance, more black doctors. You can lower the black mortality rate disparity between black and white men by nineteen percent just by having more black doctors. Right? So there's, like, a lot to be done in that sense. And then there's also things like the tools we're using and the way they're interpreted, where a lot of those the way the tools were used came out of slavery.
Dini:Right? And they were used for the specific purpose of maintaining a system of hierarchy. And so now they don't serve us. But if you aren't aware of the history and if you aren't aware of how the tools themselves are biased, you can come in as a perfectly neutral and open doctor, but you've inherited all those tools so it's gonna perpetuate the same results, which are racially segregated and always leave the people of color at the bottom. And then there's all sorts of other systems that are putting the pressure on it.
Dini:Right? There's, like, location where folks live. They don't have as much access to specialty care centers. Again, there's segregation laws that come out of Jim Crow years that separated where hospitals could be built and things like that, and good quality medical facilities aren't as available. There may not be public transportation to them.
Dini:There are food deserts. So a lot of people find that in order to eat the food that will best maintain their health, they can't shop in their local area. Right? So there are so many systems that are keeping this all in place that really when we approach trying to fix it, you've gotta go and look at, like, what are all the barriers? What are all the obstacles that are out there?
Dini:And how can we help bring in people and help them bridge that gap?
Laura:Yeah. It's it's yeah. There's so much to this conversation. I know it's gonna take, yeah, decades, if not more, to kinda unravel it all with the with the right support. But I am curious on, like, a day to day level speaking about maybe taking one system.
Laura:So clinical trials, what would make participation feel more realistic and supportive and welcoming? You know? I I think there's there's there's a lot to it. You you mentioned language and caregiver burden, but, yeah, just curious what what that needs to look like, really.
Dini:Yeah. There I'll start by saying there are people who know much more about this than me. That is not right? Like, I I wish I could tell you I've spent my whole career in this and specialized in that I have it. So, really, the way I speak from is more lived experience and what I know from talking to folks, what it would take for them.
Dini:Right? But there are some wonderful resources out there and best practices. So I'll start by saying, read those for sure if you're out there and you're interested in this. And, also, there are things we know, like like the location access. Right?
Dini:Like, where are you putting the center? How early are you involving people of color and patients in general in the study design?
Laura:Yeah.
Dini:The I mean, so many times we're working with pharmaceutical companies because they come to us and they they ask us that question. They're like, oh, how can we get people of color enrolled? And it's usually phase three by then. And it's like, well, what happened with the study design and how it was set up in the first place to make sure that this was accessible, that, you know, however the medication was gonna be received and the timing of that all work on a cultural level, on a language level. So I think virtual options are wonderful.
Dini:And then the other thing that I touched upon before, but I think is really critically important is this concept of trust. We have to acknowledge that in The US and in many countries, there has been historic mistrust in the medical systems. The data has not been private, you know, and that's on the least side of the incursions. On the worst side of the incursions, you know, it's like forced sterilizations and other terrible, terrible things that were done to women of color, to people of color. Yeah.
Dini:So now you're asking us to step into this system and, you know, reports will tell you that folks are scared. Will my children be taken away from me? What will the data be used about against me? Will there now will there be immigration issues if I'm, like, on paper and documented in certain ways? So what are we doing to assure people that this is a safe place for them?
Dini:And and not just assure them, like, make sure it's a safe place for them.
Laura:Yeah. No. I totally agree. And I something I've seen is and I think we've talked about in the previous conversation is the importance of of, like, authentic engagement. And by that, I mean, it's not just kind of entering a space and saying, hey.
Laura:I'd like you to engage with the clinical trial or this health care system and not necessarily giving back and making it a two way street and being there for a longer period before that question of access to the patients is asked. And so, you know, that lead up can look like, hey. I'm here to kind of really genuinely share more about, like, how the systems have changed maybe since some of those awful things happened. And here's how it looks now, and here's how I we we can demystify it a little bit and, you know, no expectation. And I think, yeah, there's just an authenticity to engagement that is very minimum, but I I think is is so important and and sometimes can be overlooked.
Laura:Think less now, which is which is good from what I've seen in in recent years, but I I think there's a way to go definitely. But, yeah, curious kind of what you think about that element of it as well.
Dini:Absolutely. And I I love how you're engaging in that and just, you know, our brief conversations and things. So I think it's so important to come about it, you know, with historical reference, with authenticity. And before I think it's, you know, innate in what you said, but before you're asking for so many things for this community, like, what can you provide?
Laura:Yeah. And it looks a little different every time, so I think and and you you'll know as much as me leading the colors of hope and all the other advocacy work you've done. Well, you'll know a lot more than me, but I think, like, sometimes it is like a grant funding. Sometimes it's just connection to people who who can provide other opportunities. Other times, it's just visibility of the work you're doing and just maybe recognize that that it needs to be tailored every time is so important, and no one advocacy group looks the same.
Laura:So I think that's been a big learning for us is like, okay. How do you figure this out on an individual level? What is most important to this advocate or this group? So, yeah, that's that's something that's that's stuck out to us from the last few years.
Dini:Yeah. It takes time. Yeah. And, also, I think it's so much richer and more rewarding because it it brings us back to while we're all working in this in the first place, which is, you know, humanity, saving lives, improving lives.
Laura:Yeah. Exactly. And I'd love to talk we've talked about a lot about kind of access and and maybe rare disease in general. But in terms of PWS, I I know for people listening, I'd love for them to understand the condition a little bit more. I know it can be misunderstood and or, you know, even if they're aware of it at all.
Laura:And so just curious from your your perspective, like, living with with PWS day to day, how does that look, and what are the main challenges if if you're happy to share?
Dini:I'm very happy to share because the more people who know about it, hopefully, more people can get diagnosed. And, also, even if you live with it in your community, you can be more supportive of folks. So Prader Willi syndrome, first and foremost, I just have to say it's really complex. And it's a spectrum disorder, so it can look like different things in different people. But, essentially, the way we explain it to my nine year old who has it is that, you know, the fifteenth chromosome, the instructions on that are kind of missing a few pages.
Dini:So if you have your Lego set and you didn't have a few pages, things would turn out a little different. Right? And so a lot of the things that are affected are low tone throughout the whole body. So that can be a struggle for energy, you know, for sleepiness, for things like that, for their digestion, for their eyesight. I mean, it affects so many of their systems.
Dini:So I'd say anybody who cares for someone with Prader-Willi Syndrome is going to so many different specialists. They're engaging in a lot of different therapies. It's physical therapy, occupational therapy, speech therapy for short, probably hippotherapy. My daughter does vision therapy. There are all sorts of things needed to overcome that weak muscle tone, really.
Dini:There are some developmental disabilities, but also there are some kids who are very normal and even above average on the IQ range. There are a lot of mental, you know, illnesses that go along with it. Anything from depression, certainly anxiety. We see that a lot in my daughter in particular, and it can lead to psychosis too, especially as I get older. And then I think the thing that Prader-Willi really is famous for, you know, is the hyperphagia.
Laura:Yeah.
Dini:Which is this feeling of constant, deep, intense hunger. Right? You never feel full. You feel as though you've been walking in the desert for days without food hunger. So you steal food.
Dini:You, you know, will lie to people for food and manipulate it. My daughter had stolen food from the trash cans at school. You know? They'll do whatever they can do to get that food because they're so desperate for it. And, you know, as a mother, as an Indian mother, that's the kind of stuff that just breaks your heart.
Laura:Yeah. Yeah. I can't even imagine, and I it sounds like and I've talked to some other families with PWS, and that seems to be, like, the main challenge day to day that is that is harder than most of the other challenges. And, yeah, I'm not sure if that's kind of where you are with it as well, but I know there's more research on hyperphagia specifically than than there was. So, you know, I think things are moving in the right direction in that sense.
Dini:Yeah. Absolutely. And the more we know, the better we can do. And, also, the community systems to keep our folks safe are really important.
Laura:Yeah. But, you know, like you said, the more if even if you're living in a community with someone with p PWS and you you just heard this clip today, you'd have more kind of understanding when you when you meet this person of how to kind of just know who they are and how their behaviors might be and how to interact. And so I think, yeah, I think it's a really important conversation.
Dini:Mhmm. And if they ask you a million times, what's the lunch going to be, and what, you know, what time are we having it, and what time is it again? And they're just, you know, just this absolute food obsession. They'll be like, uh-huh. Yeah.
Dini:I get it.
Laura:Yeah. So important. Well, thank you. In terms of core takeaways, I think we've talked about a lot today, but I wanna make sure if there's kind of a a main thing you want anybody to take away or anything else you'd like to share, I wanted to give you kind of an open space here to do so.
Dini:Oh, thank you so much. I really appreciate this educational opportunity. I think it's so important to understand not just on a humanity and morality level why it's important that we're reaching all folks out there. And also to think about just how results for everybody improve the more the diverse the population is in your research and in your clinical trials. Right?
Dini:So that's just, you know, diversity is the engine that we need for innovation, so it really helps everybody. And, yeah, my hope is that we're not leaving people out there without the support, without the diagnosis that they need.
Laura:Yeah. No. I really appreciate that. And I think we could talk about this for hours, days, and weeks more, and I'm I'm sure we will. But I really appreciate you kinda taking the time today to start that conversation and sharing with us.
Laura:And, yeah, your perspective is, as always, really educational for me on a personal level, but I know it will be to everyone listening too. So, yeah, thank you again for coming on today.
Leapcure:That wraps up our conversation with Dini Rao. Her work is strengthening support for rare disease communities, helping close equity gaps for those impacted by Prader Willi syndrome, and challenging all of us in clinical research to do better. We're grateful for the community she's built through Colors of Hope and her leadership in ensuring families of color are seen, supported, and represented in the evidence that shapes care. If you found this conversation insightful, please be sure to follow Leap Together on your favorite podcast platform. Thanks for listening.
Leapcure:And until next time, stay informed, stay engaged, and keep pushing for better health outcomes for all.