A New Program That’s Working to Increase Minority Participation in Clinical Trials and is Working to Change Outcomes with Dana Dornsife, the Founder, President, and CEO of Lazarex Cancer Foundation was automatically transcribed by Sonix with the latest audio-to-text algorithms. This transcript may contain errors. Sonix is the best audio automated transcription service in 2020. Our automated transcription algorithms works with many of the popular audio file formats.
Saul Marquez:
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Saul Marquez:
Welcome back to the Outcomes Rocket, Saul Marquez is here and today I have the privilege of hosting Dana Dornsife. She’s the CEO of Lazarex Cancer Foundation, a nationwide non-profit organization she founded in 2006 in response to a family experience with cancer. The unique mission of Lazarex is to improve the outcome of cancer care, giving hope, dignity in life to advanced-stage cancer patients and the medically underserved by providing assistance with costs for FDA clinical trial participation, identification of clinical trial options, community outreach, and engagement. I’m just really excited for the conversation we’re going to have with her today. And Dana, thank you so much for just coming here on the podcast today.
Dana Dornsife:
Well, thank you all very much. Looking forward to our conversation as well. And I really appreciate the opportunity.
Saul Marquez:
Absolutely. Absolutely. And so the work that you guys do is extraordinary. In a time of anyone’s life that happens to be dealing with cancer, it’s a very challenging one. And on top of that, the costs associated with treating it is also very challenging. So what is it that lit your spark to get involved in health care, to begin with?
Dana Dornsife:
Well, honestly, I never intended to get involved in health care. Health care had intentions for me, and that came about as a result of a personal family experience with pancreatic cancer, actually. My youngest sister Erin’s husband was diagnosed with pancreatic cancer in 2003, and he was stage four when he was diagnosed and he was given three months to live. At the time, they had three very young children and we knew what the prognosis was for Mike. So Mike went on to a standard of care. He went on to chemotherapy and they asked me if I would look into cancer clinical trials for Mike because we knew if we tried the same thing that everyone else had done, we weren’t going to get different results. So of course, I said yes and I really, truly didn’t realize what I was signing up for. It took me five weeks to navigate through the world of clinicaltrials.gov. I am a designer by trade, so I was unqualified to be taking on that activity, but I did it anyway for the sake of my loved ones. And five weeks later I emerged from that process with a short list of clinical trials that I thought made some sense for Mike.
Dana Dornsife:
And I read two or three sentences of a protocol and then look up 16 words at medicaldictionary.com. And I was truly overwhelmed by the whole process. And I thought, how does anyone get through this? I didn’t have cancer. I wasn’t taking care of someone with cancer. My youngest son had just gone off to college. I sold my business. I mean, I was in the perfect place to be able to do this. And then when we got Mike involved in a trial, he met other patients who were having challenges with pancreatic cancer and he was actually responding really well to his trial. And so they always ask him, what are you doing? And he said, oh, just call my sister in law Dana, she’ll help you. And literally, that’s how Cancer Foundation began.
Saul Marquez:
Amazing.
Dana Dornsife:
We got nineteen months of life for Mike through a clinical trial, so his children were able to spend extra time with him. His youngest daughter remembers him as a result of that 19 months. And sadly, we lost Mike, but the phone kept ringing and here we are 17 years later.
Saul Marquez:
I can’t. I mean, just amazing. That’s just amazing that this act of kindness has evolved to become what it is today.
Saul Marquez:
And I just want to give you major recognition for that. I mean, to give that life, you know, additional life to Mike, those memories to his family. And now, I mean, how many people are you guys helping a year?
Dana Dornsife:
Well, this year, even with the impact of COVID on clinical trial participation, we’re going to close the year out between eleven hundred and twelve hundred patients.
Saul Marquez:
I mean, just amazing.
Dana Dornsife:
Yeah. And I mean, if you think about it, that’s the size of an entire clinical research program in a lot of the comprehensive cancer centers. So. Yeah, so there is a lot of need out there.
Saul Marquez:
Huge work and important work. So as you and you’ve already alluded to some of these things, Dana, but as you consider how Lazarex adds value to the health care ecosystem, how would you articulate that?
Dana Dornsife:
Well, we’re addressing barriers and challenges that really no one else is addressing. We remain I can’t believe it, but we started in two thousand six and it’s 2020, 14 years later. We still remain the only nationwide cancer nonprofit that not only does clinical trial research to identify opportunities for cancer patients, but we actually provide financial assistance to them and a travel companion so that patients can actually participate in trials. And, you know, there are other organizations who do clinical trial navigation and there are some who provide some financial support. But really for a cancer patient to be able to make a commitment to participating in a clinical trial, you have to be there with them the whole way. You have to hold their hand and you have to go through every step of the process with them and you have to provide enough resources for them to be able to continue. And that’s what we do. We reimburse our patients every month for, you know, yes, airfare, lodging. But truthfully, the majority of the time, it’s a tank of gas, tolls, and parking that are preventing patients from taking advantage of novel therapeutics and cancer clinical trials and really connecting them to a lifeline for what’s next. Because if they don’t if they fail standard of care and they’re not able to participate in a clinical trial, they will die.
Saul Marquez:
Yeah, yeah. It’s a shame. And, you know, it sounds like a lot of you know, as we like to call social determinants of health, you guys are identifying some of these bottlenecks and helping them get it.
Dana Dornsife:
Absolutely. One of the things that really come to light with COVID is health disparities and how social determinants of health and where you live, where really does impact health outcomes. We’ve been addressing health disparities in cancer for a long time. We’re really focused on improving cancer health outcomes. We have a very low minority participation rate in cancer clinical trials in this country. It’s five percent, which is you know, it’s impossible to understand the scientific efficacy of a drug when you’re for all segments of our population when you’re only testing it predominantly on one segment of the population, the white population. So, you know, our work on addressing these cancer health disparities, we really focused on improving the diversity of cancer clinical trials and again, getting patients where they need to be when they need to be there so they can take advantage of those opportunities.
Saul Marquez:
Totally. And so let’s dive in deeper here, Dana. And so obviously the uniqueness is clear. Right. you guys are doing a lot of this. There’s care coordination. There’s finding those gaps. What would you say are the things that make you guys most unique?
Dana Dornsife:
Well, I always when I address my team around this, I always say we have to take action. Right. There is a tendency in industry, academia, medicine to do studies and to talk about barriers and challenges. But it’s not often that you find, you know, someone actually taking action to address those barriers. And we’re all about providing a bottom-up strategy right versus top-down. We are not going to mandate to our patients what we think they need. We’re going to ask them what they really need and listen to what those needs are and invite those individuals to have a voice in their health future, which they’re not often asked to do. And creating that bottom-up patient perspective and helping people to ask better questions will obligate those at the top to come up with better answers. So we truly believe that this is a bottom-up solution. And, you know, we need to listen, and we need to carry that torch.
Saul Marquez:
That’s well said. It’s difficult, especially with more advanced things like cancer, things get really complicated. And it’s not straightforward ever from where do I go to how much is it and what drug do I take and how often it just it’s so complicated. And having their best interests in mind is something that should be standard. I feel like we’re starting to become better at it, but we still have a long way to go. Give us an example of how you guys have helped improve outcomes or made lives better.
Dana Dornsife:
Back when I first started this organization, we were all about clinical trial navigation and connecting patients to trials, and helping them with the financial toxicity side of things. And that was great and it was altruistic and noble, but I really felt like we weren’t changing anything. And I really wanted to change, literally, transform bench to bedside in relation to clinical trial enrollment and diversity. So in 2012, we came up with a program called Impact Improving Patient Access to Cancer Clinical Trials. And that program is an institutional level program where we have a hypothesis that if we undertook specific actions at the institutional level right from the beginning of the process when a patient is considering clinical trial participation when they’re going through the consent process, we introduce them to the financial reimbursement program, literally removing finances from their whole thought process right from the get-go so they can focus on what’s best for them Right. and their health and for their family. And we showed in a pilot study at Massachusetts General Hospital, which was then called the Cancer Care Equity Program, that we could, by undertaking those specific actions, positively influence clinical trial enrollment and diversity. We improved enrollment by twenty-nine percent and we doubled minority participation. So we decided to take the results of that pilot study. We rebranded it to IMPACT and are now in a full-on nationwide program with impact for comprehensive cancer centers. UCSF and San Francisco, USE Norris in Los Angeles and the Anderson and Abramson in Philly. And our results from January one 2018 through August thirty-one of 2020 we have sixty-four percent minority participation and the impact program. And of those participants, fifty-three percent come from households earning twenty-five thousand dollars or less. These are clearly individuals who would never be able to consider participating in a trial without the travel assistance that they’re receiving from Cancer Foundation.
Saul Marquez:
That’s awesome. That’s amazing. Congratulations on those numbers. Obviously, the people behind the numbers. Right. But you’re running an organization to improve it. You’ve got to measure it and you’ve got to measure it. They make it better. So from five percent, which was the initial number, I mean, it’s just flabbergasting. I love it. Good for you.
Dana Dornsife:
It is. And in my wildest dreams, I mean it with our care program, which is our just our day to day patients call us. We provide help to them. Our minority participation is about it pumps up and down, but it’s about 30 percent, which is a significant increase above the national average of five. But with IMPACT, we are really addressing the number one barrier for patients, which is I can’t afford this, and I’m not going to use whatever resources I might have leftover. If I have to do something that may or may not work. Patients are more focused on, you know, I, I have limited time left. I want to leave my family or my children in the best possible position Right. we remove that from the equation.
Saul Marquez:
I love it. And so the financial assistance you’ve mentioned, it’s the travel. It’s the lodging. Does it also include the specialty pharmaceuticals and the actual medical costs as well?
Dana Dornsife:
So in a cancer clinical trial, the. investigational drugs and thanks to the Affordable Care Act, most of the costs associated with clinical trial participation are actually given free of charge.
Saul Marquez:
Cool. So who takes care of that piece?.
Dana Dornsife:
Yes, most of it. There are still some gray areas where insurance companies will not cover certain things because it’s considered investigational right. So that’s their caveat in the way that they get out of having to cover things. But to be clear, I mean, more and more and more, we’re closing the gap on those things. However, there is no protocol or standard for helping patients with the out of pocket expense travel expense. Right. So consequently, what that does is if you are an individual with cancer and you have resources, financial resources, right, You get to go to a clinical trial right. If you don’t, you’re not even going to consider. And that’s in poverty, sadly, disproportionately affects our communities of color. R So we’re reaping what we’ve some sown. and we’re seeing that in the numbers. We only have five percent nationwide participation in cancer clinical trials with people of color. Right. And we can do better. And so we are all about doing better Right. bringing the trials to the community, giving patients more opportunity. And by offering travel reimbursement, we’re actually creating a platform of equitable access Right. so we can address these health disparities around cancer clinical trials. We’re not enriching people. We’re not writing them checks and they’re not right. It’s not an income opportunity. It’s simply creating parity and equity so that everyone has the opportunity to take advantage of medical breakthroughs in cancer clinical trials.
Dana Dornsife:
I love it. That’s so great. And it is. It is. It’s a blessing what you guys are doing for people right now. And so I’m sure, Dana, as you very well know, after 14 years of doing this, it’s challenging. So I love to hone in on what you believe one of the biggest setbacks you’ve had and what was the key learning that came out of it?
Dana Dornsife:
Yes. So that’s a loaded question, Saul. So I will do my best to answer it succinctly for you.
Dana Dornsife:
Sure. Back in 2012, when I got frustrated, we can only help as many patients as we were able to raise money to support, which is great. But I said something’s got to change here. We need to fix the problem, not just service the problem. So I started to ask better questions and I started looking at why does this problem begin to exist, to begin with? And it took me in a completely different direction than I had ever anticipated. But the answer to that question was that because of some of the medical atrocities that have occurred in the history of our country, there was FDA guidance language that was literally authored to protect people from being taken advantage of. That said, you cannot coerce or induce a patient to participate in a trial with financial gain. In other words, no pay to play Right.
Dana Dornsife:
And that’s all good, except that with the stroke of a pen, that language had a very unintended consequence. And that consequence is that the very people it was trying to protect were now being prevented from being able to participate in trials because they simply couldn’t afford it. So fast forward here we are looking at this problem in all of my discussions with biopharma and I talk to five or six big pharmaceutical companies and I ask them, why won’t you support our work? Why why are you not including out-of-pocket expense as part of your clinical trial budgets? And the answer was, we’re not allowed to. We will have the FDA can come down on us and we will have serious fines if we coerce or induce, so believe it or not, that was the crux of the problem, and I realized we have to address that issue because the only way we’re going to come up with a sustainable solution is if we interact with pharma and actually get them to include those out of travel expenses as part of their protocol. Right.
Dana Dornsife:
So I ask them, OK, if I’m able to address this coercion and inducement issue, can we have a different conversation and an across the board? They also said yes, with that sort of like a mildly yellow-orange light, like, OK, we can. But they really weren’t sure that I’d do that.
Saul Marquez:
They’re just saying, yes, sure. We’ll see where she goes with this.
Dana Dornsife:
Right. In a perfect world. Right, right. Sure. Sure we can. Right. Well, lo and behold, I was spent a lot of time on Capitol Hill, spent a lot of time with state legislatures and with the FDA. And we actually were able to get FDA guidance language that says out of pocket expense is a barrier for clinical trial participation. And it is allowable. I’m paraphrasing,
Saul Marquez:
That’s awesome.
Dana Dornsife:
And we had success at the state level with legislation because IRBs internal review boards were concerned as well because they were beholden or handcuffed basically by that same notion. So we dealt with at a federal level, we dealt with it at the state level. We have state legislation now in five states and we’re working on half a dozen more currently. And we’ve created this permissible environment now. So we were able we actually carved out reimbursement from inducement and coercion and we’ve made it OK to create that platform of equitable access.
Dana Dornsife:
So now we’re having different conversations and pharma is coming to the table. But the reluctance we’ve we’ve it’s been that way for so long. For decades, they’ve there’s been this whole concern around coercion and inducement. It’s taking a long time to I refer to it as turning the battleship in the bathtub. Right. But they’re coming along. And until we can put action behind those words on a page, it means nothing. And we’re starting to take action now. So I would say that was one of the biggest setbacks. And, you know, my key learning is that you can make the impossible possible. Yeah. Right here I am a designer from Danville, California, who never intended to end up with a cancer foundation, who is addressing access barriers right now. But I think in a way because I don’t have a medical background, I was able to see things from a fresh perspective and a different perspective. And I didn’t have any assumptions I wasn’t, oh, we can’t do this. We can’t do that. Right. I’m just looking at it. What can we do? Yeah. Right. Yeah. And with my team, we were able to get that done. So never underestimate the power to make a difference. And I think that’s one of my key learnings.
Saul Marquez:
That is awesome. What a great story, Dana. And I love that you are over and in DC you’re knocking on doors, having discussions, and lo and behold, a carve-out for these specific things that we’re discussing today.
Saul Marquez:
I mean, just awesome. And then the thing that you left us with, there are words on paper. You’ve got to take some action here, take some action to reinforce your message at the beginning of the podcast, right. Take some action.
Dana Dornsife:
It’s all about the action that you take, because at the end of the day if you’re actually not able to help patients, what good have we done? I mean, all of the research right. All of the development. If it doesn’t get to the patient, then we might as well have not done it at all.
Saul Marquez:
I agree with you. Hundred thousand percent. And I love your passion, Dana, as you’re passionate about helping people and increasing access, what are you most excited about today?
Dana Dornsife:
Oh, my gosh, there’s so many things. But I’m really excited about the opportunity to bring health disparities to the fore. Again, right, COVID has it’s blatantly obvious to everyone now what health disparities are and why they exist and yes, they do exist. And I don’t want to revisit this 20 years from now when we have another pandemic and we go, oh, my gosh, you know, look at our people of color who are being diagnosed and dying disproportionately. I don’t ever want to revisit this. We have an opportunity right here, right now to get it right. It’s not easy. It’s a heavy lift. That’s why it hasn’t been done yet. But we are looking at this issue. Nobody owns the problem. It’s a policy problem. It’s a legislation problem. It’s a medical problem. It’s an academic problem. It’s a regulatory problem. It’s an R&D and pharma problem. But just like we had this environment that was handcuffing people to do the right thing and include travel expenses, we also have that same issue around our health disparities. So we have to look at this and do a bit of a deconstruction project, look at it from the perspective of every stakeholder, and understand what the challenges are from every stakeholder’s perspective. And then slowly reconstruct and come up with a solution that is acceptable and engages with everyone.
Dana Dornsife:
That’s how we’re going to fix this problem. And it’s not easy. It’s not about health bears. It’s not about handing out pens and rubber bracelets. It’s about being in the community, place-based leadership, culturally appropriate programs, and having the community lead that effort, hearing them, giving them a voice. We’re doing that in Philadelphia right now. And I have to tell you, in the Promise Zone in West Philly, in 10 of the poorest African-American black neighborhoods in West Philadelphia, we have ten neighborhoods, thousands, tens of thousands of people who are excited about participating in their health future. We can do it. We’re trying it. We’re looking at this thing. It’s big, as I said, a heavy lift. But our goal is to create a program that’s replicable and cost-effective so that we can take this effort on in communities all over the country, whether it’s L.A. or Miami or Chicago or Baltimore. And so I’m really excited about the possibility of addressing health disparities and making this problem go away.
Saul Marquez:
That is amazing. So the program in Philadelphia just I guess I mean, that’s so wonderful that you’ve expanded the vision to overall health disparities and you’re walking the walk. You know, you’re taking action. You’re not just excited about it. You’re actually doing something about it, which is hard.
Dana Dornsife:
Well, you know, we realized that for the comprehensive cancer centers, their patient base is already engaged right. They already have done the homework or they have the resources to be at the comprehensive cancer center. That’s not going to move the needle on five percent. It’s the people who aren’t engaged yet, And the people who don’t have the opportunity to engage in health care at that level. That’s where we’re going to make the difference. And so we took our IMPACT program and created another program called Community Impact. And that’s where we’re in West Philly right now, taking these actions at the local level in the community and creating a bridge between their local resources and assets to the cancer treatment, health care, and ultimately, if needed, cancer clinical trials. So stay tuned, because we’ve created the baseline. COVID has given us some challenges, but we’re navigating around that right now. And I hope to have some very positive outcomes to report here in the next maybe by the end of next year, even love it then out.
Saul Marquez:
Well, congratulations to you and your team for the amazing work that you’re doing. Folks if you’re curious about how to learn more, or to donate or how to just to get involved. The website is Lázarex.org. You’ll also see it on the Website. Go to Outcomes Rocket, that health type and laser, you’ll see our interview with Dana there, the full transcript, and show notes. Dana, take us home with what we should be thinking about and the best place that the listeners could reach out to you or your team directly.
Dana Dornsife:
Yeah. So I just really want people to remember that cancer just because we have this issue with COVID right now. Cancer doesn’t go away. Cancer diagnoses are down twenty-five, 30 percent. And it’s not because it’s not there. It’s because patients are afraid to go to seek medical help Right. And we’re unfortunately kicking the can down the road where perhaps a stage one or stage two diagnosis will become a stage three or stage four diagnosis where your prognosis for survival is so much lower. So please, please, if you do feel that you have a medical issue where you feel a lump in your breast or you please seek medical help now because if there’s anything we’ve learned throughout this situation with COVID, our medical facilities do have the ability to safely address these problems and do screenings so do not we make sure we get that done. And as far as how we can engage better with your audience, please know that we are a resource for anyone out there who needs to learn more about clinical trials or wants to identify clinical trial opportunities and might need financial assistance to get there. And the best way to do that is to reach out to us on our website, which is lazarex.org. LAZAREX.ORG And on our website you will see all of the links to all of our social media as well.
Saul Marquez:
Dana, what a tremendous invitation to all of our listeners. And I thank you for that. And listeners, do your job, spread the word. The work that’s being done here by day 19 is just extraordinary. Let’s help improve patient access to clinical trials.
Dana Dornsife:
Saul, it’s there is I come from the Golden State Warriors territory and they’re their tagline is strength in numbers. And it’s so true. There is strength in numbers. And the more people that we can bring together around this issue, the better the opportunity to create this bottom-up movement, this bottom up solution. So thank you.
Saul Marquez:
Absolutely. Thank you, Dana. Appreciate the work that you guys are up to.
Saul Marquez:
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