Turning Words into Action: Equity, Diversity, and Inclusion in Rare Disease

The growing concerns about equity, diversity, and inclusion has had particular resonance in the area of rare disease, where health disparities have been felt throughout the community. Eve Dryer, vice president of patient advocacy for Travere Therapeutics, has been involved in a number of efforts to address these issues and her company has played a critical role in funding initiatives to address health disparities that result from racial and socioeconomic drivers. On the heels of the recently completed Global Genes 2021 RARE Health Equity Summit, we spoke to Dryer about why Travere has focused on these issues, the work it is doing, and why it is such a critical issue for the rare disease community.

Daniel Levine: Eve, thanks for joining us.

Eve Dryer: I am delighted to be here. Thank you so much for inviting me.

Daniel Levine: We’re going to talk about Travere, its efforts to raise the discussion around equity, diversity, and inclusion, and why this matters, particularly in the world of rare diseases. Equity, diversity, and inclusion are terms that get thrown around a lot. Perhaps we can start with what it means to you.

Eve Dryer: I think I was born to work in rare disease and even more so to work in the diversity arena because I always had a big voice and I’ve always known how to speak out on behalf of myself and my family members and those that are dear to me. But I’m also a socialist at heart. So I believe that everyone should have the opportunities to speak out and gain access to what they deserve. And I think that good healthcare is what everyone deserves. So I’ve long been invested in helping to amplify the voices of patients who don’t know how to speak on behalf of themselves. If I go back, oh, maybe 10 years ago, one of my first efforts was when they rolled out Medicare Part D and I was working with a pharmaceutical company and I was working with CMS to help roll out the drug benefits.

It was a challenge and what we did was work on a My Medicare Matters program for seniors in the Hispanic community, and that’s something I felt so strongly about. It was probably the thing I was most proud of and that my dad was most proud of because I was helping people, who didn’t know how to speak on behalf of themselves, gain access to a healthcare benefit they deserved. And then even moving on from there on another very significant effort, and probably one of my first forays into rare disease, was working on rare breast cancer. And that brought me into touch with the sisters network and with them we worked on an effort called Ambassadors in Pink, and we taught young teenage girls how to work with their families and ensure that their moms and their aunts and their neighbors and their grandmothers were gaining access to mammograms and following up and making sure that when they had the need to follow up on the rare tumors that impact on black women, such as triple negative and inflammatory breast cancer and BRCA and others, that they had the ability to stop the silence, which they were inclined to be very silent about disease, and speak out on behalf of themselves.

So, when I first found out about the job opportunity at Travere, it was really a perfect match for me because they were truly committed to serving a patient community that represented all patients. Their investment in achieving health equity was something that really, really rang true to me. And what it’s meant for me since the time I’ve joined the organization, which was about two and a half years ago now, is that we really need to take the steps to first understand the challenges, the unique challenges that rare disease patients with color, or with other social determinants of health impacting on them, what they face so that we can help them to address them. And I’m really proud that the advocacy team that I’ve built is deeply invested in sharing throughout our organization the stories and the experiences of the diverse people that we serve. That doesn’t just mean patients. It means the children of patients. It means the caregivers of patients, and we work very hard to integrate the perspectives and the experiences of diverse patients and caregivers into our drug development process through numerous channels, which include our patient and caregiver advisory council, our quarterly conversations that we hold with the leaders of about 15 diversity and advocacy organizations. And we have been actively engaged over the past four or five years prior to my joining the organization in making sure that the advocacy team was supporting diverse representation in our clinical trials.

Daniel Levine: What were the discussions within Travere around EDI issues and when did the company see this as an issue that it wanted to devote resources to address?

Eve Dryer: My first discussions around EDI actually began with my interview with the CEO, with Eric Dube, and having had such a wonderful experience and known that I could actually have some impact together with a team of people with regards to improving the access of diverse patients to earlier diagnosis and earlier treatment. I wouldn’t have joined the company if it had not been made very clear to me during that first interview with the CEO that we had a sense of shared commitment that they were committed to making sure that we were focusing on diversity in recruitment for all our trials. And we take very special pride in having been the founding company that reached out to the leaders of a very well-regarded diversity health organization, Black Women’s Health Imperative, not three months after I joined to let them explore with us the opportunity to form an organization that would begin to address on a more unified cross-organization and cross industry basis the formation of what we think is the first of its kind effort, and that’s our Rare Disease Diversity Coalition. So that was the very beginning, going back almost two and a half years ago, of the ways in which I was able to work with Travere in terms of supporting and expanding our involvement in diversity, both externally, making sure that we were working with other companies as well, to ensure that it was part of the north star of not just our company, but of our other rare disease company partners, because we all work together. At the end of the day, we want to see innovative treatment that’s going to reduce the delays, that’s going to reduce the impact of disease progression, that’s going to really create a fair playing field withequality for all when it comes to access to healthcare.

Daniel Levine: Within the context of rare disease, what makes this a particularly important issue to vote money and energy to? Why does it matter?

Eve Dryer: Because there are barriers that people with rare conditions face. There is unintended bias. We would like to think of it as unintended bias when a person of color or a person of lower education walks into a doctor’s office and that doctor may very sympathetically, but wrongly, assume that that patient or that caregiver doesn’t necessarily have the ability to listen as well as a person of higher education or of higher wealth, have the ability to participate in a trial, have the ability to take time off as necessary to go through tests, have the dollars or coverage to afford, to have access to the batteries of tests that often are involved in acquiring the right diagnosis in rare disease. And in fact, we know that along this sometimes five to seven year journey to reach a final and true diagnosis in a rare disease patient, you’re looking at probably—and this is my own estimation, I don’t have any research to back this up and I apologize—but you’re probably at a 20 to 25 percent increase in time that people of color or people of lower education have when facing the achievement of the right diagnosis and the access to the right care. And if you’re in an area of very diverse geography, sometimes geography is also a very impactful determinant of care. Then you’re not going to have access to the specialists that people who are in larger cities might have, people have the best health care coverage have, people have the education have.

Daniel Levine: There are many barriers to access, to care, to access to a diagnosis that people with rare diseases in general face. Is there any way to tease out what role EDI plays in that?

Eve Dryer: Right now, there are a number of efforts that are moving forward within numerous companies, numerous diversity organizations, medical schools. Fortunately, the list is going on and growing. And I think in some ways it’s odd to say, but we actually have COVID to thank for that because the disparities in COVID diagnosis and treatment really underscored the horrible cracks in the foundation of our healthcare delivery system. So what we’re seeing now is that medical schools are increasing their efforts to recruit students of color. They’re increasing their efforts to make sure that those students are mentored during their first and second year and experienced in working in a medical situation. We’re finding that there’s opportunity to expand, focus on curriculum development, to ensure that our up-and-coming young doctors of tomorrow understand how you can’t look at a patient and assume what their needs are, what their capabilities are, and you need to treat each of your patients the same and give them the same opportunities for the most innovative process to diagnose and to treatment. You’re also looking at efforts at BIO, the organization, where they’ve just launched a major diversity in clinical trials campaign and are going to be holding companies of major, mid- and smaller size accountable for sharing best practices and how they’ve been successful in attracting patients of color to trials so that trial outcomes represent the true impact on what sometimes are the differing physiological impacts of, or mechanisms of action of potential innovative treatments on different populations. The list of ways that we can impact really goes on and on. We have to look at some of the genetic testing efforts going on the natural disease registries that are being invested in and expanded. We also need to look at what’s happening now in government, where you have the Institute of Minority Research looking at ways that you need to expand investment in researchers of color. So there’s really a lot. That’s just bubbling up over the past few years, and hopefully it’s not going to stop until it’s not needed anymore, until we’re not even going to need to speak about diversity in healthcare, because all you need to say is healthcare. And it’s going to mean all people.

Daniel Levine: As you think about underserved communities, are there common challenges they face, and if so, how should those be addressed?

Eve Dryer: When you think about diverse populations and looking at diversity as reflecting, as I said before, not just color, but geography, income education, there are a lot of different shared challenges. Certainly there is one of language. There is one of income. There is one of stigma in many populations. There is actually a long lasting sense that disease is not something that you share with other individuals. You don’t get involved in the patient advocacy groups because you don’t talk about yourself and you don’t talk about your family. One of the other challenges in many of the population-based groups, whether you’re talking Asian or LatinX or Hispanic or Native American, is that you’re not looking at a national organization or national population as a way to address the needs of that community. And you really need to address the populations at a community based level. So that’s also something that’s very similar, whether it’s the Asian community or the Hispanic community, you need to be looking at geographical centers of population. That’s also something that you find in common. And then of course, with regards to the level of employment that individuals have, if you’re not in a white collar or a union job, you don’t have the time off, you don’t have the paid time off, you don’t have the paid childcare that’s going to enable you to pursue the multiple specialist appointments, the time that you need to invest in participating in the trial. And that’s another area where people of very diverse backgrounds share a challenge in terms of how they can pursue treatment and in many cases, even their first diagnosis. So yes, I think that when you look at the different populations that we would look at as being impacted by the social determinants of health, there’s a lot of shared aspects to that.

We’re also looking right now, in fact, we’ve written it into our 2022 budget line, we are committed to not just translation, but transcreation of material into languages that are significant to the large clusters of population in the therapeutic areas that we serve. So, I think that that’s something else that groups in the rare disease community and diverse populations are equally threatened and impacted by—that the materials that are developed for them and could give them the background aren’t developed with consideration of some of their social nuances, some of their cultural preferences, sometimes even that the graphics or photographic representations in these materials don’t even represent the populations that they’re intended to educate.

Daniel Levine: Travere is supporting a number of initiatives within the rare disease community around EDI issues. Before we go into those, I’m wondering if this work has had any effect on the company internally, its policies, its staffing. Has it caused the firm in any way to look inward at all the things it does and do things at all differently?

Eve Dryer: We’ve been very engaged both internally and externally when it comes to DEI. As I mentioned earlier in our conversation, we were actually working on diversity with regards to patients’ engagement in trials, with regards to our support of various organizations, some of it prior to my joining the company, going back possibly as much as five or six years ago to the company’s origins. And what happened when all of the social injustice ripped its way through our country—what was it, it feels so much longer ago, but it really was only 18 months ago, I guess May and June of 2020—a group of our employees of color went to the CEO and said, we need an employee council that’s going to be focusing on internal diversity and inclusion. And I’m very proud to say that one of the members of my team was one of the volunteers and has co-chaired our internal DEI council for the past 18 months and that’s a volunteer effort. These are people who work before work hours and after work hours. So we’re very committed to educating our population. All of our employees have participated in various aspects of voluntary educational programs. We’ve made a library available, have been making sure that we’re identifying and distributing as gifts to our employees a number of different books that address diversity through the eyes and lens and ears of people who’ve lived the problems. We are very invested in terms of making sure that diverse patients, as part of our patient advisory council, are given an opportunity to review various processes, are given an opportunity to review a clinical trial recruitment website. We’re actively recruiting, soliciting input from patients of color to make sure that we are really ensuring that our processes are reflective of patients, be they Caucasian, Black, LatinX, Asian, Japanese, Chinese, as the Asian community is really reflective of a number of different populations. So, we really are working and it’s a process. It’s something that we started on a number of years ago, and we’re going to be working on for a number of years to come. As I said before, we will be investing in diversity until being able to say ‘patients’ absolutely reflects all patients. So, our internal investment in making sure that we are a diverse organization is genuine. It is from the bottom up, from the top down, and it’s something that I think so many of our employees believe in right now. One of the things we are doing is looking at ways that we can support various local organizations of color in San Diego, with food banks and other efforts to make sure that the holiday times are happy for these people who have gone through hard times. Employment is down and many families still have their children at home. So, I’m going to sound like my grandmother. You know, it warms my heart. When I think of how genuinely committed all levels of my colleagues throughout the company are to diversity, equity and inclusion.

Daniel Levine: You’ve been a supporter from a financial point of view of many rare disease patient organizations, including Global Genes. You were a sponsor of the recent Global Genes Rural Health Equity Summit, NORD, a member of the Rare Health Equity Leadership Council. What’s the goal in supporting programs like these?

Eve Dryer: I think that all companies that play in the healthcare space have a responsibility to make sure that we are supporting, and in many cases, jump-starting initiatives that are addressing barriers to care. And in our case, those are barriers to care for rare patients of color. So, I also would turn around then and ask you isn’t that what we should be doing? It’s something that I think is incumbent upon us as a member of the healthcare delivery system in many ways—that if we’re not doing this, who will be doing this, and if we’re not taking a lead, then who will be taking this lead?

Daniel Levine: You’re also working with the EveryLife Foundation for Rare Diseases, NORD, as well as the Rare Disease Diversity Coalition. These are groups that are more policy focused. I wanted to have you offer some thoughts on where EDI issues play in specific areas and actions you’d like to see taken. Perhaps we can talk about that in different buckets. The first is reducing delays in diagnosis and treatment. What’s the problem and how can we fix it?

Eve Dryer: There are so many ways to respond to that question so I’m probably going to go off in a couple of different directions. First, I want to reiterate how proud Travere is to have the opportunity to play a leadership role in helping to jumpstart some of these initiatives with the organizations that you mentioned. I mean, we are very open about the fact that we’ve been part of some of the earliest conversations with Global Genes that actually led to the launch of their Rare Disease Diversity Council that rolled up to that amazing summit that was held by Global Genes several weeks ago and will now happen on an annual basis. And we’ve also been proud that, you know, we’ve prodded along, I think, some of the organizations, even NORD, and you mentioned EveryLife. So, looking at your question with regards to policy, both NORD and EveryLife have a very strong policy function and we’ve been very proud to be part of supporting that function. This would be the area of responsibility played by my colleague, Chris Porter, who’s the head of government affairs and policy for Travere and what Chris, working together with NORD and with EveryLife and sometimes medical organizations or the various caucuses—what we’ve been able to help accomplish one is to create and build on a general awareness within members of Congress of the need to ensure that policy, particularly policy and legislation that has funding attached to it, is reflective of the importance to include the needs of diverse populations. For instance, the tele-health legislation that was passed, I believe in 2021 and was first introduced in 2020. I believe I may not have the dates right and I do apologize if I’m wrong about that, but that piece of legislation was sponsored by Congresswoman Kelly and it really focused on the fact that there needed to be expanded access and support to underwrite expanded access to telehealth by all populations, but also ensuring that rare disease populations and diverse populations were able to understand how to access telehealth as a way to enable them to achieve continued engagement with physicians throughout the pandemic and even no as telehealth is becoming a way of life. So in terms of policy, again, we as an advocacy team support our government affairs and policy team. But what we will do is make sure that we’re helping to amplify the voice of our patients. You may remember, I started off by underscoring our responsibility to help amplify the voices of people that may not naturally speak out on their own. So, when there is a piece of legislation that reflects better support of the rare disease and the diverse rare disease community, we will be reaching out through our organizations, asking them to do sign-on letters that will go to congressional offices like Congresswoman Kelly’s and others and actually also to their own district representatives to make sure that their representatives are supporting that legislation.

It would also though come into play when you’re looking at some of the major budget decisions in terms of funding that’s going to various government divisions. If you look at the NIH Institute for research in minority populations, we will focus on making sure that an equitable amount of funding goes to continue and grow that kind of effort. So that’s where policy and legislation would come into play, also in educating and doing regular sharing of information with our advocacy group leaders on different action within Congress on the budget discussion, on the orphan disease tax credit legislation, which has been very heavily discussed during this budget season in the fall of 2021. So we will make sure that we’re keeping our rare disease organizations, and now we’ve expanded that information, working through the Rare Disease Diversity Coalition, to make sure that we’ve expanded our reach and to an even broader group of patient organizations, not just within our own Travere therapeutic areas, but within the 200-plus organizations that are now part of the rare disease diversity group. The Rare Disease Diversity Coalition, by the way, has a legislative track that a number of organizations and several companies are involved in, in terms of developing legislation and recommendations that they’re communicating through the Black legislative caucus, the Hispanic, legislative caucus, the Tri-caucuses, the Rare Disease caucus. So, we’re just making sure that those that are responsible for drafting legislative recommendations for today, tomorrow, and beyond have the voice of the rare disease patient of color in their ear.

Daniel Levine: Travere is also quite active working with patient organizations around specific disorders. I’m wondering, do you get involved with EDI issues with those organizations as well?

Eve Dryer: I think one of the things that we’re most proud of at Travere is not that we have helped some of the national organizations in launching efforts like EverLife’s diversity fellowship or the underrepresented researcher awards that Uplifting Athletes launched last year. We really take the greatest pride and satisfaction that we have worked within our advocacy communities, which include the nephrology area, FSGS and IGA nephropathy, the Zellweger syndrome organization, the CTX organizations, and others, and help them by providing support for them to create diversity initiatives, create diversity councils, create better channels of outreach to patients of color so that their representation within their patient communities really are representative of all people that are impacted by those specific diseases. That has really been something that we’ve taken a great amount of pride in. It’s not just been supporting with contributions. We’ve also been able to roll up our sleeves and participate in some of their round table discussions or help them set up equity councils or done diversity research. It’s very important to us that we are giving tools to the organizations thatare working within the rare kidney disease area and the metabolic area that represent the organizations that we’re involved in from a standpoint of Travere Therapeutics and our pipeline.

Daniel Levine: There are also concerns about engaging with diverse populations around research and clinical trials. What are some of the issues that need to be addressed? And how would you like to see those tackled?

Eve Dryer: That’s a very challenging question in terms of how we might like to see those tackled. A couple of months ago, we did a session as part of the NORD annual summit that looked at the expansion of ways in which patient organizations were bringing research opportunities to the attention of various companies. And I’m very happy to say that that has happened with us. We have had some of the representatives of our patient advocacy organizations in some of our therapeutic areas come to us and ask us to work with them to try to create an interest on the part of NCATS, which is the research function of NIH, try to move along some of the research that happens into other ways of treating the diseases that they’re focused on. And some of them have very sadly lost children to those diseases, but I would be very hopeful that our company and other companies are going to be even more proactive in the future.

And I have no authority in this space. I have no input into our policy decisions in this space in my company, but I really think and hope that we’re going to see more companies looking at investment in research that will result in treatment opportunities that have an impact on populations where there is a high prevalence of disease in the African-American community, segments of the Asian communities, Native American, and others. So, from a research standpoint, it’s going to be a long build. I think that in a great way, it’s going to be some of the medical institutions that are going to have the opportunity to push that forward, organizations like Powered, some of the other free-standing medical research organizations around the country, to be focusing more and more on research that has an impact on diseases that are highly prevalent in populations of color.

With regards to the question of trial involvement, it’s a complicated issue. As I mentioned earlier, it’s something that we have definitely been investing and devoting energy to at our company. Over the past few years, we have consistently held advisory board meetings with communities of color in the rare kidney disease [space] that we’re very engaged in right now—in FSGS and IGA nephropathy. We have held advisory group meetings with patients in the African American community, in the Indian community, the Southeast Asia Indian community, in the Chinese community, in Hispanic community. And that list will continue to grow. And that information is utilized by our medical affairs team and our clin-ops colleagues to develop some of the protocols for clinical trials that are in development that will go into the materials that are developed to go out to communities of color, to make them more aware of trial opportunities.

The other thing that we have really started investing in as a company—and I know there are companies much larger with much larger budgets than we have and that have been in this much longer than we have that have had the opportunity to be more sophisticated about the channels of communication that they use. But there’s still a surprising number of companies and not just companies, but organizations in the healthcare space that aren’t yet bracing the need to ensure that you’re using the right channels of communication when you’re trying to get information about trials out to communities of color. So, a member of my team had created a very strong relationship with a group called Black Health Matters and we’ve worked with them on their summits across the country for the past three years, focusing on rare kidney disease. They focus on many other diseases. We’re looking at the channels that are most effective in outreach to the other populations that we’ve been talking about today. We’re also looking at how we can get the information most appropriately to lower literacy populations, another population that is definitely one that is impacted by disparities. So, you definitely would want to ensure that we’re reaching out to those that don’t necessarily have the high level of education that is going to enable them to realize that participating in a trial will potentially mean something for them, for their children. But it also means something for large populations in the future. So, we’re really exploring ways that we can increase our enrollment of communities of color in our trials as every single company that I know of is really invested in right now. You’ve just possibly seen that BIO has announced a program that’s also looking at the way to address disparities in clinical trials and add diversity into clinical trials.

So, let’s hope that disparities is a word that goes away. Diversity is a good word. Disparities is not. I think that it’s going to require a tremendous amount of engagement. It’s going to require a tremendous amount of recalibrating the way that some trials are formulated. There may need to be weekend clinics so that people who don’t have paid time off are able to participate in a trial and have their weekly trial visits on a Saturday or a Sunday. There needs to potentially be more home-based care provided by nurses as part of trials. There may potentially need to be a way that the investigative sites are going to provide reimbursement for childcare when people don’t have childcare that they can leave other family members at home with. It’s a very complicated challenge, Danny. And I hope that we continue to see step-by-step movement forward over the next couple of years. There’s no question that it’s one of the biggest challenges we have in terms of ensuring that diversity is wrapped into research and clinical trials and there’s no one answer if there is.

Daniel Levine: Eve, you’ve shared a number of efforts that are going on. There’s been a lot of talk about various ideas at different conferences. How do you turn this into action?

Eve Dryer: It starts with each one of us getting involved and with catalyzing others to recognize the need and to do the same. I talked about the Rare Disease Diversity Coalition. We have a website. Look up Rare Disease Diversity Coalition and sign up as a participant. There are lots of efforts that we would be thrilled to have additional individuals involved in. It could just mean working with Global Genes to advance equity and diversity through one of their efforts. It could mean supporting the policy efforts of EveryLife or NORD in Washington. There are any number of ways that people are able to get involved and it’s going to take everyone and it’s going to take many other partners along the way. And I just think that, you know, as we head down this path together and I’m hoping Danny, you’ll be part of this, you’ll be a partner. You’ll look at one of the websites and sign up for one of the efforts. It’s going to require that we head down this path together and that we roll up our sleeves to really drive our diversity, equity and inclusion work forward. And to do that, I ask that everyone listening, hold yourselves and each other accountable and together we’re going to make it happen.

Daniel Levine: Eve Dryer, vice president of patient advocacy for Travere Therapeutics. Eve, thanks so much for your time today.

Eve Dryer: Thank you so much for inviting me to participate. I really enjoyed the conversation.

Check out Equity, Diversity and Inclusion Reports