April 23, 2025
Welcome to Perspectives, a signature podcast series from The Leerink Center for Pharmacoeconomics. Hosted by Dr. Mel Whittington, a health economist and Head of the Center for Pharmacoeconomics, we will be hearing from individuals across the industry to better understand and appreciate the societal impact of healthcare innovations.
Mel Whittington: Today we’re talking about patients and their contributions to drug development and market access. We’re also going to get into how innovators and investors can partner with patients. Today I’m honored to be joined by my dear friend and longtime colleague, Dr. Elizabeth Franklin, who is the Head of US Public Affairs and Patient Advocacy Oncology at Sanofi. Elizabeth, thank you.
Elizabeth Franklin PhD, MSW: Thank you so much for having me, Mel, it’s great to see you.
Mel Whittington: Great to see you. When did we first meet? It was a long time ago.
Elizabeth Franklin PhD, MSW: It was a long time ago, I want to say like 10 years ago and you called me up out of the blue. I was working at the Cancer Support Community and really hadn’t done much work with health economics but I was really interested in the concept of value and you called me up and you really wanted to understand the ways in which cancer patients think about value, you know, how they decide what treatment is right for them and it was immediate friendship love and we have worked together ever since and I’m so grateful.
Mel Whittington: I love it. So yeah, when I first met you, you were at Cancer Support Community. I’ve always known you as a patient advocate. What led you to being a patient advocate? What did life look like before Cancer Support Community and before your current role?
Elizabeth Franklin PhD, MSW: Yeah, so I’m an oncology social worker by background. All of my degrees, including my doctorate, are all in social work and I always knew that I wanted to help people, and social work seemed like a very clear path to do that and I was very fortunate early on in my career to work under an oncology social worker and really just fall in love with the field. All of the things that I cared about, you know I really cared about social justice issues impacting racism, sexism, homophobia, and healthcare really is a microcosm for that, and it was a way to get into a field that I could have a direct impact on those things and impact people’s lives in a positive way. So, started my career with the National Association of Social Workers and then moved into patient advocacy. So, I worked at the Cancer Support Community briefly at George Washington University Hospital. Since I do have that social work background, it was great to see how policies impact patients on the ground within the hospital. And then went to the Cancer Support Community, which is where we met very fortuitously. And I’ve been with Sanofi for the last three years.
Mel Whittington: Amazing. So, this is a naive question, but what is a patient advocate?
Elizabeth Franklin PhD, MSW: Yeah, you know, a patient advocate, it could be a patient, it could be someone like me, you know, Mel, I think you’re a patient advocate. There’s very few of us who are not impacted by some sort of disease. It doesn’t need to be cancer. It could be diabetes, mental health. You know, we are all going to be impacted by disease in our lifetimes or someone we love will be. And so, I think that patient advocates are all of us. We are all doing this work on a regular basis. And we really just work to ensure that patients’ perspectives, needs, their rights are represented in healthcare decisions. And that can be everything from within the clinic with their doctor, making sure that patients understand the kinds of questions that they can ask and make sure that the kinds of treatments that they want to be on are available to them. They can advocate with insurance companies or drug companies, and they can advocate with Congress, with state legislatures. You know, it’s really just making sure that that patient voice is heard. And one of the ways that we’ve worked together is through health technology assessment and making sure that patient voices are central there. But it’s really helping folks to understand, you really don’t know what it’s like to have a certain type of cancer until it’s impacted your life. You don’t know what it’s like to have MS. You don’t know what it’s like to have, you know, chronic depression until it’s impacted your life. And it’s critically important that those voices are represented with people who are making decisions. And so, it’s about making sure that advocacy and advocates are at the table wherever decisions are being made.
Mel Whittington: I love that. I always appreciate you reminding me that I’m also a patient advocate. And I think that’s true, as you said, of anyone in this industry. I think there’s a reason why we all chose health care to spend our work time. And it usually is because of either a personal experience or an experience with a loved one as a patient. And I agree with you. In all of our activities, I think we should all be aspiring to be patient advocates. And Lou Garrison, one of my mentors, like the buzzword, “patient-centeredness.” He always says, it’s really people-centeredness, because we are all patients. We’re all future patients. We’re all going to be patients. We all have loved ones who are patients. That this kind of patient advocacy, patient engagement is really just like people. We’re all people and patients to the core.
Elizabeth Franklin PhD, MSW: Well, and when a patient walks through the door of a hospital or a clinic, they’re a person first. When we talk about what’s important to patients. I may care about not feeling nauseated or not losing my hair, for example, as a cancer patient, but I may also really care about being able to walk my dog every day or being able to go into the office on a regular basis. These are all things that make me a person, and I am a person before I’m a patient. So, it’s important to remember that.
Mel Whittington: It humanizes these things that are important to realize, you know, medicine and healthcare and drugs, these are all doing things for people in health and outside of health.
Elizabeth Franklin PhD, MSW: Yeah. I have a friend right now who just finished treatment for pancreatic cancer, and he is dealing with pretty extreme neuropathy, and he didn’t realize before going through this, you know, they said, “we’re gonna put you through some pretty intense treatment because you have pancreatic cancer, which is notoriously a very difficult and very deadly cancer.” And he’s 50 and they said, “we’re gonna throw everything we’ve got at you.” And he said, “Let’s do it. You know, I wanna live.” And now, he’s happy that happened because he came out with flying colors, the cancer’s gone, but he has this incredibly intense neuropathy, which is impacting his ability to text, to type, to do all these things. Not that he wouldn’t do it the same way if he had to do it again, but it’s important for us to understand these things so that when we’re making future treatments, we can say, like, “look, neuropathy is a really big deal. You might not think it is before you’ve experienced, but it has a huge impact on quality of life.”
Mel Whittington: Absolutely, absolutely. So now you’re at, you went from Cancer Support Community to Sanofi, heading their US public affairs and patient advocacy and oncology. One cool thing about our field is, I’ve worked with you when you’ve had different affiliations, you’ve worked with me in different affiliations, so I still kind of see you as Dr. Elizabeth Franklin, and I just feel like that has carried throughout all of your all of your affiliations, but in your role at Sanofi, what does a day in the life look like? And is this unique that a global healthcare company has a role like yours?
Elizabeth Franklin PhD, MSW: Most, if not all, pharmaceutical companies and global healthcare companies have a patient advocacy role, which is awesome, because it means that we understand the crucial role of having patients at the center of all that we do. I think if you asked baby Elizabeth when I was 18, would I work at a pharmaceutical company? I didn’t even know that it was a possibility, right? I went to school to be a social worker, but I find that the healthcare system is so incredibly complex. And Mel, your comment about you met me when I worked at the Cancer Support Community, and I knew you when you worked at the University of Colorado and ICER. And we’ve had these different roles. And I think that it’s reflective of the fact that the healthcare system is so incredibly complex, and you can’t just understand one small sliver of the healthcare system. And so, when I was working in nonprofits, I absolutely loved the work. I remember during the COVID pandemic, I thought I feel so fortunate every day to get up and be energized and excited to go to work. And by work, I mean down the hall to my desk. But it was such a hard time, and I was so fortunate to be able to do something I loved. But I got to the point where I thought if I’m really gonna have the type of impact that I wanna have, I need to mix it up. I need to gain different skills. And in this case, really understanding how the pharmaceutical industry worked because these are the medications that are helping people lead better, longer lives. And in some cases, like with oncology, saving their lives. And I really wanted to understand what it looked like from this side. And I’m so glad that I did because I’m learning things every day. But really when you ask, “what does a day in my life look like?”, strategizing about how to best incorporate patients’ voices in the work that we do. And I can only speak to the ways that Sanofi approaches this but we truly do bring in patient voices at every step from the development of clinical trial protocols to what patient reported outcomes we’re going to include in those trials to active partnerships with patient advocacy organizations to do things like reach more patients of color and make sure that they understand their disease state to post marketing and making sure that we understand the ways in which patients’ lives are being impacted and what is important to them and how, you know, really how can we continue to elevate patients to make sure that when we say we’re a patient centered company, which, you used that term earlier. I think that it’s really overused and kind of everybody says they’re patient centered. My goal every day when I get up is make sure that Sanofi is walking the walk, talking the talk. If we say we’re patient centered, it’s because I’m incredibly fortunate to be in a role where that’s my entire job every day and I get to work with extraordinary patient advocacy organizations like the Cancer Support Community and others that we work with who are serving patients every single day.
Mel Whittington: First, thank you for all you do. Every time I talk to you; I leave empowered and so optimistic about the future and optimistic about the industry. You already talked about ways that patients are engaged in the process of drug development and market access. And I think the vast majority of society, when they think of a patient, they either think of the person sitting at the exam table in the doctor’s office or the person in line at the pharmacy to pick up their prescription. And I think the vast majority of society is unaware of actually how integral and integrated patients are in the developments and the market access of a medicine. And so, I want to spend some more time there and dig in and have you educate all of us about how do patients interact or contribute to drug development.
Elizabeth Franklin PhD, MSW: Yeah, yeah, no, I think it’s critically important. And this is an area that I didn’t really understand before I started working in patient advocacy, not just at Sanofi, but I remember coming in and thinking, patients are going to the FDA. What are they talking about? They’re talking to these scientists and physicians and others in the clinical world. But it’s incredibly important for them to do that because the example that I gave before, we often think, and again, I keep bringing up oncology because it’s my background, but we think maybe someone doesn’t wanna lose their hair or maybe they don’t wanna feel nausea, but there’s other things like fatigue that can be incredibly important, you can’t get out of bed because of fatigue. There’s also things, when I worked in a hospital, folks who couldn’t come into treatment five days a week because they had kids, let’s say you’re a single mom and you needed to take care of your child or your parents. There’s so many things that are impacting patients’ lives. So, when we’re looking at, and I mean this in terms of industry as a whole, in clinical trials, when we are looking at a therapy that you can take orally or that you can do at home and you don’t have to come into the clinic, that can be massive. It may not seem like that big of a deal, but it can be really huge. And so helping companies and decision makers understand what’s really important to patients because if it can keep you out of the clinic and keep you at work if that’s what you want to do or you know I mentioned my friend he wanted everything thrown at his disease because otherwise it would be deadly and so let’s get the best, there’s still not a cure for pancreatic cancer so let’s do everything we can to invest in those areas. I know that Sanofi is very much prioritizing best in class, first in class therapies. And we are looking at hard to treat cancers, hard to treat diseases, that there’s nothing else that exists out there for it, because those are areas that we hear from patients. We don’t have anything. There’s not a ton of hope out here other than managing symptoms. We wanna make sure that we are focusing on those areas where there’s a lot of unmet needs. So, I appreciate you thanking me for what I do, but I feel incredibly honored to be able to say, you know, when I found out we recently were talking about a new therapy that we’re getting into, my colleague and I got tears in our eyes and then that may sound sappy, but it means that we have the potential to affect and impact the lives of people who are dealing with a cancer that up until this point, it may not be a death sentence, but it certainly is going to shorten their lives. And it’s an incredible privilege to bring in patient voices as the possibility of having additional therapies and hopefully one day a cure will be possible.
Mel Whittington: Absolutely. You said the word impact, and that’s kind of my word of 2025 of I think the industry needs to lean into the impact because the impact that these treatments and potential treatments could have is huge. And I think we need to lean into that more. And it is emotional. I mean, there’s so many instances where you hear about new treatments, and you hear about new approvals, or you hear about treatments that failed and that’s emotional too. You know, it’s emotional because these things have impact.
Elizabeth Franklin PhD, MSW: Absolutely.
Mel Whittington: And it’s exciting because it has impact. I had heard a story from a patient advocate once about how there wasn’t good engagement in a trial with patients because the administration of the medicine was at a schedule that no kid, it was a disease that impacted children that no kid would want to do. It was like during the lunch hour. Nobody wants to leave the lunch table and go to the nurse’s office and take a treatment, right? And so, it’s something like that. That’s an area where patient voice can so easily be understood and hear that and then change things. And then it can really change the success of a product.
Elizabeth Franklin PhD, MSW: Yeah, and I’ve never known a patient who doesn’t want to tell you about their experience and not because they want to talk about themselves or what they’re going through. Every patient I talk to wants to make the life better for the next patient. So, they’re willing to say, and this is why people get into patient advocacy, “I want to make an impact so that somebody doesn’t go through what I went through. I want to raise money so that there’s more research and development down the line. I want to talk to somebody and be their peer support,” it’s because they want to make the lives of those kind of following behind them better.
Mel Whittington: Yeah, and I think when you become a patient, you so quickly and so deeply learn so much about that condition. I felt this in situations where family members have had certain conditions and yeah, you just, you become experts in that. And then you think about at the beginning how lost you felt. And if you could share that wisdom with other people who are, who you know that they’re going to feel that gap or feel that being lost if you can help them through that. That’s very fulfilling.
Elizabeth Franklin PhD, MSW: Absolutely.
Mel Whittington: Thinking about trial design and endpoint selection. So even beyond frequency of administration, route of administration, schedule, whatever that is, how do patients, I think you had mentioned Sanofi works with patients to think about trial design and endpoint selection. What does that look like?
Elizabeth Franklin PhD, MSW: You know, I think there’s, at least at Sanofi, there’s many different touch points at which patients can be involved. And, you know, I think first of all, it’s really important for patients to understand clinical trials, right? At least in oncology, I think it’s a scary concept for people because they think, “Oh I’ll either get designated to the arm where I’ll get treatment or I’ll get designated to a control or placebo arm.” And that’s not the case in oncology, right? You’re getting designated to standard of care versus the treatment arm. So, making sure that we’re busting some of these myths, right? So, we work with patient advocacy organizations around clinical trials education. So, making sure that they understand that’s an opportunity. Making sure that they understand our doors open. If we’ve got a trial in X, let’s talk. We proactively reach out to many of the patient advocacy groups in the disease areas where we’re practicing to say, you know, “can we do an interview with you, a conversation, let’s do focus groups, let’s understand the day in the life of the type of patient that you are.” And then we take all of that information, all of the information that myself and my team have from, I’ve worked in oncology for 20 years, I work with virtually every patient advocacy organization, I can give them a lot of information to help inform a trial. We take all that information and then we think about what does the trial really look like, what kind of patient reported outcomes we want to include in the trial that will be most meaningful for those patients. And we kind of come at it from every different department. I know Mel, you’ve worked on projects with us where we’re looking at it from sort of a behavioral health standpoint. You know, what makes the most sense from that standpoint. We’ve got the scientific standpoint. We’ve got the patient advocacy standpoint. What we’re constantly working towards, how can we better incorporate patient voices? Because I’m actually in the process right now of writing an article with some colleagues around what does patient engagement actually look like? And here’s what it doesn’t look like. Writing the protocol and getting ready to launch the trial and then showing it to a patient and saying, “hey, will you just take a look at this and make sure it looks okay?” That’s not, and tell me it’s good, right? I wanna say that I have patient engagement. That’s not patient engagement. Having a patient involved from the very beginning to co-create, right? I think co-creation is such an important concept because we can’t possibly know what every type of patient and every type of disease state would care about, we need to hear from them. And so, making sure that from the very beginning, all the way through trial development, what we’re focusing on is we’re bringing the drug to market. And then after the market too, after the drug is on the market, what does the life of a patient look like and how can we continue to improve, continue to make that better? It’s really critically important. And I’m glad that I work at a company that it’s honestly, sometimes it’s exhausting because everybody wants to hear from patients. And I have to say, you know, let’s, but I want everybody to hear from patients because if you don’t, I don’t care what role you’re in, whether it’s clinical trial design up to and including patient advocacy, you need to be talking to patients to understand what they care about.
Mel Whittington: Absolutely. OK. So, we’ve talked about this drug development process a little bit in all of the places even after development everywhere that patients are integrated and important to inform. Let’s pivot now to thinking about once the drug is approved or once the drug is potentially going to get approved how do patients contribute to that process? I mean you and I had previously had some shared engagements around health technology assessment, evidence generation after approval, can you help us understand some of those areas that patients are involved in?
Elizabeth Franklin PhD, MSW: Yeah, I know we’ve talked about this a lot and if the clinical trial or conception of the clinical trial is step one and the drug coming to market is sort of the midlife of it. There’s still an entire swath of time and an incredibly, if not the most important moment, which is when patients can actually access medications. And so, I’ll start there because one is, can patients access the medications and what does that access look like? And you and I have worked a lot on health technology assessment and value assessment. And there’s a big piece of that that goes into the ability to access but sometimes even when there’s been a positive value assessment, patients still have a tough time accessing medications and so, patients communicating those stories and helping insurance companies and decision makers understand what that experience is like. I don’t think anybody wants to be dealing with cancer or multiple sclerosis or any disease really and have to go to their insurance company and fight for coverage for the drug that’s right for them. I think that it’s really exciting how much innovation there is and how many incredible therapies are on the market, but it’s only as exciting if patients can get access. And so, help making sure that it’s not just, well, I guess I don’t have access to that drug. I’ll try something else. We’re in an age of personalized medicine. So, what does their access story look like? But also, having that real world data is so critically important because it helps us understand what does the day in the life of the patient look like? Your point about kids and if it’s a therapy that they need to take at lunchtime or think back to therapies that you need to take every four hours. I’m not gonna wake up in the middle of the night and ruin my sleep in order to take something every four hours. We’ve all got that story of being in the hospital when the nurse comes in and pokes and prods us. Nobody enjoys that. So, what does that real world data look like? What is the economic burden? What does your productivity look like? It spans the gamut. We want to see, the clinical trial is this sterile because it needs to be scientific environment to see how the drug interacts with the patient population. The real world is what happens next. How does a patient access it? What does it look like in their life? What are they paying? Is it something that improves their quality of life? All of those things. It’s really important to understand that across the patient’s time of taking that medication so we can better inform policy, better inform drug development down the road, have better clinical trials. There is always something to learn. And we’re living in such an exciting moment of innovation and technology that we’re gonna continue to be able, and I say we sort of as the broad healthcare ecosystem, we’re gonna continue to be able to make really exciting, really innovative, really cutting-edge therapies and devices and treatments. And we need to learn every step of the way. We can’t just rush off and create things without really understanding the impact that they’re having in the lives of patients.
Mel Whittington: And you brought up the trial. So, I’m an economic modeler at heart. I love building economic models and using evidence to inform decision making. And there are certainly, if I think about my input sheet on my model, say it’s like 300 rows long, and maybe five, I don’t know, even less, even some more, some less. Five of those inputs are directly from the trial. A lot of the evidence comes from outside of the trial. So, sure you could change your treatment effectiveness inputs to use trial versus RWE or, you know, kind of what source you’re using for that treatment effectiveness. But there’s also so much evidence that’s needed for those economic models that’s outside of the trial. And that’s an area where I think we’ve seen a lot of patients and patient groups creating evidence around, you know, economic burden and caregiver quality of life and patient productivity and caregiver time that there’s all of these non-trial data points that I think patients have and continue to provide evidence to inform those.
Elizabeth Franklin PhD, MSW: Absolutely. I think about the fact that oftentimes HTA bodies get pressure for continuing to assess. Obviously, they assess in the very beginning because the drug’s coming to market, and they need to say what the appropriate cost is based on the model. But if we’re going to push them to continue to make assessments, then it needs to be based on the data that continue to be generated. To your point, it’s no longer just clinical trial data, it’s that real world data. And I think to bring it back to innovation, we have so much information from digital tracking devices, different technological methods. We have more access to more data than we’ve ever had before. And I think that can only be a positive for patients. I will never forget, I once saw a medication adherence product that was, you actually could integrate it into the pill. So, the physician could see if the patient was actually taking the pill and there was an app involved in it, like those types of things. You know, it needs to be something that the patient’s comfortable with, right? We don’t want to have a kind of big brother environment, but it’s something that instead of, you know, we know that humans, we have a flawed memory and it’s sometimes difficult for patients to report to their provider. “Yes, I’m taking the drug every day.” Either I don’t remember or, you know, I think one of the most important things is that patients also get really anxious. I know I get anxious when I go to the doctor and self-reporting, like, I never drank, I walk 10 miles a day and I get plenty of sleep. It’s an intimidating environment and so using technology to help better understand, and it’s not because the physician wants to negatively impact the patient or judge them in any way, it’s to really understand how the therapy or how their lifestyle or whatever it is, is impacting them and how we can adjust their healthcare treatments or their lifestyle to make sure that it’s fitting within their life. And so, I think there’s just a ton of opportunity for us to engage with patients, understand what’s important to them and generate data to better inform the healthcare system and our processes in the same breath.
Mel Whittington: Absolutely. So, you being at a big global health care company that develops and commercializes drugs, I think you’ve already talked about all of the different ways you engage patients. Can you talk a little bit about why and how that’s been so beneficial? Is it better information? Is it better designed trials? What are some of those tangible benefits that you all have experienced?
Elizabeth Franklin PhD, MSW: The first thing that came to mind when you asked that question, Mel, is if we didn’t have a me in the company, it would be like we always laughed. I know I did when I was in school, and I had a professor who had not been in the field doing social work in 25 years and they had no clue what was going on out in the real world. And so, it would be very hypothetical. It would be very academic in terms of “this is how you should work with this type of patient.” My favorite professors, the ones that were most in touch with what was going on on the ground, were the ones who were still working, right? The adjuncts who were the ones. And I come from a very practice-based field, which is social work. You need to know, like, what does the child welfare system look like? What does the healthcare system look like? If you’re a school social worker, you need to be in school to understand what those kids are going through today. If you haven’t been in touch with the students, the patients, the people who you are expected to impact on a day-to-day regular basis, you have no idea what’s going on because the world evolves so quickly. And so, I think that you cannot be a quote unquote patient-centered company without having folks who are talking to patients, understanding what’s important to patients, talking with patient advocacy groups. You asked me early on why I got into this. I’m originally from Kentucky where the cancer rates and the mortality rates are incredibly high. I’m really passionate about this because many people in my family have cancer and many more are going to have cancer and so, understanding it from a personal perspective, having your finger on the pulse of what’s important to patients, it’s not value added. It’s absolutely integral, right? You have to do it and you have to truly have the respect of the patient advocacy community, not be a partner who’s in and out and just coming in to say, “hey, will you help us with this trial?” No, help, I really want to understand the patient experience and I really want to make sure that you are at the table whenever you want to be at the table. Whenever it makes sense for you to be here, let’s talk about it. And I think we do that.
Mel Whittington: I love it, so hopefully everybody listening to this is like, yes, if I haven’t partnered with patients already, I am ready to partner with patients. How would they do that? What if they have no idea where to start, where to find patients, where should they look? Any recommendations of how people from our industry can authentically partner with patients or how do we find these people?
Elizabeth Franklin PhD, MSW: Yeah, I think our relationship is the best real-life example of how this got done.
Mel Whittington: My cold call?
Elizabeth Franklin PhD, MSW: Your cold call. It wasn’t sure if it was an email, but you contacted me.
Mel Whittington: It was for sure an email, yeah, I was very, very green.
Elizabeth Franklin PhD, MSW: But I think that patient advocates and patients, to what I was saying before, want to share their story. They want people to pay attention because we can do a lot by ourselves, but you can have an army of experts, and the patient is the expert in their condition. Mel, you’re an expert in health economics. I might be an expert in industry or in social work and together we can come and create a plan to best possibly serve the patient. So, you cold called me, right? And I responded and then we wrote together, we partnered on things. I joke that I’m a Mel Whittington Groupie, and I’ve learned so much about health economics from you and about value assessment. And if you hadn’t reached out, and I think at the time, like I would have had no clue who to reach out to, but you say all the time, you know, reach out to your friendly health economists. They want to partner, they want to, and I think the same is true. If a health economist or somebody working in healthcare wants to partner with a patient advocacy organization. Find those groups that are out there. In oncology, there is a group for every single tumor type. There are many pan tumor organizations. Find a group that is doing work that you’re interested in, that’s what you’re trying to study or what you’re trying to engage in and reach out. I’m a big believer in life that the worst anybody can ever say is “no”, and then I move on, and it is what it is. Just reach out and say, “look, I want to partner on a study, or I want to interview a patient, or I want to understand more about your role and what it looks like working with this patient population.” I think that 99% of patient advocates will have a resounding yes.
Mel Whittington: Yeah. Right. It can be as easy as a Google search for specific condition patient advocacy group. There’s a contact page. I was talking to someone, and I’m like, “well, how do you guys identify patients to partner with?” And he’s like, “have you ever heard of Instagram?” I’m like, “oh, do you have to pay for a database?”
Elizabeth Franklin PhD, MSW: Yeah, patients are more active than ever, whether it’s Instagram or X or LinkedIn or I have people reach out to me all the time and say, “Hey, do you know a patient with this type of cancer? Or do you know a patient with a disease that has nothing to do with oncology?” But I guarantee I probably know someone who knows someone. It’s a small world, but one in which I think everybody should be involved because we all have something to gain from it.
Mel Whittington: Absolutely. One more question before we close. You’ve been so gracious with your time. You had said you were drawn to your career by witnessing people being left behind, witnessing inequitable systems. Obviously, some of these issues still exist today. What are they? Do you think we’ve made any progress? And if you could magically wave your wand and remove one barrier, what would it be?
Elizabeth Franklin PhD, MSW: Yes, definitely still access issues, inequality. Again, in oncology, we continue to see people of color experiencing later diagnoses and higher rates of death from different cancers. And it’s not a biological issue. It is an access issue. Its communities being left behind and not being provided with the most appropriate care. I was talking to a colleague last week, whose daughter doesn’t have cancer but did have a rare disease. And her story about getting into the hospital and getting this disease diagnosed was absolutely heartbreaking. She said, “Elizabeth, people didn’t trust me as a black woman. They didn’t think I knew what I was talking about. And I knew more about my child’s symptoms and what my child was going through than anybody else in this world could. Who else but me is going,” But she said, “I wasn’t taken seriously. They didn’t listen to me. They thought that I was being hysterical, or they thought that they could just press me aside and I didn’t ever give up.” And so, she found she connected with the physician that she ended up really trusting and they diagnosed the rare disease, and her daughter is doing fantastic. But those discriminatory factors still exist. We know that unconscious bias exists, racism, all of these things exist. And so, we really need to be working together to make sure that it doesn’t matter who you are, if you are experiencing a disease that, first of all, we should be preventing, right? And making sure that people have access to all of the things that they need to have access to live healthy lives. But when they are in the system that they are able to be taken seriously and overcome the barriers that exist. But, if I can magically remove one barrier, I think it’s making sure that people can afford their medications, that financial toxicity is not there. I’m incredibly passionate about patient navigation because I think that anybody who’s diagnosed with cancer or another chronic disease, it’s really confusing and difficult to navigate healthcare systems. And it’s becoming even more confusing and difficult because on the one side, treatments are more innovative than ever, are more exciting, there’s more available, but it’s also more confusing. And as you said, when you get diagnosed with a disease, you have to become an expert overnight. Navigators can help patients to navigate their disease, navigate financial issues, access issues, address health disparity issues, all of those things. So just a huge plug for navigators. Im a big advocate for that profession because I think it’s so critically important.
Mel Whittington: Oh yeah, thank you. We have a lot of work to do as a society, and I agree. There’s this whole kind of movement of we have innovation that is remarkable. We are seeing terrific innovation coming to market. We are having new treatments for conditions with huge unmet need or first-in-class treatments. And those treatments have to eventually make it to patients. And so, we can’t pass these on through massive out of pocket costs to these patients. We pay into an insurance pool to not make those who need the medicine have to foot all the bill. And so, this whole affordable innovation and how do we incentivize these terrific innovations but then not pass on costs to patients through.
Elizabeth Franklin PhD, MSW: Paying for value. This is a topic that you and I bond over. And I’ve heard our CEOs say “there’s nothing for us to back down in terms of value. Make a first-in-class best-in-class therapy price it appropriately makes sure that the patients who need it have access to it. And let’s keep innovating and keep doing good things.” I think that we’re moving towards, hopefully, an ecosystem where that happens.
Mel Whittington: I love it. I love it. We do like to ask one final question at the end of all the episodes. I think this is the hardest question of the day. But what is the best piece of advice that you have ever received?
Elizabeth Franklin PhD, MSW: Oh gosh. That is a hard question.
Mel Whittington: I figured you and I could have this conversation about patient engagement and patient centeredness in our sleep, this is harder.
Elizabeth Franklin PhD, MSW: You know, I think I’m gonna go back to something I said earlier in our discussion, which was the worst thing that people can say is no. I think that that advice has served me throughout my career, both professionally. You know, I have asked, from my very first internship, as it was ending, I asked for a job. They said, no, that’s fine, look at me now. But I think that whether you’re a patient and you’re asking for what you want and what’s important to you and telling your story, whether you’re a professional trying to move up in their career, you know, whatever it is, I fully believe that the worst anybody can say is no, and then you move on and keep going and you learn lessons from those. So don’t be afraid to ask, don’t be afraid to make your voice heard. That’s really what’s fueled my career, my passion for healthcare, and I think it’s really important.
Mel Whittington: Well, thank you for doing all the things that you do and thanks for coming on this podcast, and I hope we get to talk soon.
Elizabeth Franklin PhD, MSW: Thanks Mel.
Thank you for listening to this episode of Perspectives. If you’re interested in participating in future podcasts or would like to learn more about the Leerink Center for Pharmacoeconomics, please email cpe@medacorp.com.
