Special thanks to our episode sponsor, Amgen. Brian McMahon CEO and Founder, SparkCures Interview Date: December 6, 2015 Summary Clinical trials are the way that newer and better treatments are brought to multiple myeloma patients, but finding one that's right for you can be completely overhwhelming. Brian McMahon's mother died of an aggressive form of multiple myeloma and he has dedicated his life to help myeloma patients find a cure for this disease. Normally, patients search the never ending maze of www.clinicaltrials.gov to find a trial, but on average, the results list are in the hundreds. Really? How do you choose your optimal treatment? With his new tool, SparkCures, the number of trials that are personally relevant can reduced to a more manageable number (like 10-15) that you can then discuss with your doctor. ALL myeloma patients should consider clinical trials. They are not last-ditch attempts, but are comparing the "standard of care" with something much better. Learn more about how this product was created just for myeloma patients and how you can use it to plan ahead for your myeloma care. Perform a Search on SparkCures The Myeloma Crowd Radio Show With Brian McMahon of SparkCures
Jenny: Welcome to Myeloma Crowd Radio, a program to help myeloma patients understand the latest in myeloma research, I'm your host, Jenny Ahlstrom.
We'd like to thank Amgen, maker of carfilzomib, for their sponsorship of today's program.
We're here at ASH for two of our shows and we have Brian McMahon of SparkCures with us today. Brian is an entrepreneur who has developed a very useful program called SparkCures to help patients find multiple myeloma clinical trials in a much easier way. We're all looking forward to doing that. Brian, welcome to the show.
Brian McMahon: Thank you.
Jenny: Maybe you want to begin by helping us understand how you came to start SparkCures.
Brian McMahon: It's a little bit of a long story so I'll try to condense it somewhat. It actually turns out that over the past 10 years I've been a cancer caregiver four different times. It really all started with my mom who was diagnosed with multiple myeloma back in 2005. The way that happened was she was -- they gave her a 30-day prognosis after diagnosis. The reason for that was they caught it really late. She had two genetic mutations; a deletion and a translocation. My mom was a really uncommon cancer patient as we were talking before the interview here, and that's that she was an oncology nurse with over 30 years of experience and she was a pharmaceutical clinical trial support specialist and she was a clinical support specialist and she was a salesperson for Amgen. So she lived in the oncology world for very long time. As soon as she was diagnosed, clinical trials were right there at the forefront of the options. Within two weeks of her diagnosis we were enrolled down at a critical trial at the University of Arkansas. So it was really interesting that immediately my mom got enrolled in this clinical trial. Unfortunately it was just a really high risk myeloma situation. She ended up passing away after about two years with the disease. She ended up going through two auto transplants one allo, and it was from the allo complications, graft-versus-host that she ended passing away. My mom was really incredible. It was two years of real high quality life. My mother was working. We were going on vacations. I ended up moving home to be the primary caregiver with her at that point. Like I said, it wasn't the end outcome that we wanted but I had two years with my mom where I got to know her and interact with her and lived with her and doing these awesome things with her in a way that never would've happened prior to her getting myeloma. So it was a really interesting experience for us to go through. In that in the midst of that my grandmother was diagnosed with cervical cancer. If you look at over the past 10 years, my business partner passed from neuroendocrine cell cancer and my father-in-law was diagnosed with pancreatic cancer. What we found was after my father-in-law was diagnosed with pancreatic cancer we immediately rushed up to where he was. When we went to the first doctor's appointment they didn't bring up clinical trials at all. Unfortunately at this point we were so used to this. We had dealt with it so many times. We knew the right questions to ask. When we started asking about clinical trials the doctor there said, "Well, there's nothing here that he matches for. But if you go to clinicaltrials.gov and you do some searches next time you come in for your appointment we'll look at it and see if there might be an eligible match." So we said okay. We went back home. We searched on clinicaltrials.gov. It provides you with the ability to set a ZIP code and then a search radius based on miles. What we got even with limiting that down to about 200 miles were 350 clinical trial options for my father-in-law. Jenny, what do you do at that point? Do you print out a thousand pages of clinicaltrials.gov? Go into a 50-minute consultation? It's eenie, meenie, miney, mo? Doc, what are we going to do? If I contrast those two experiences, my mom was a really good advocate, a really informed person, she had the right phone numbers and the right people to call to say, "What are we going to do? Where's the research going?" I think one of the things that I really loved about my mom being involved in that is that the people, the myeloma patients that came before her really helped her to live longer just like she's played her part in helping patients today to live longer and longer and find better, newer therapies that are working even better. So from a personal standpoint, I got to see how impactful clinical trials and this research can really be for families, for my mom to live longer, to have that time with my mom. So that's what really opened my eyes up to the clinical trial side of things. Where SparkCures really came from was -- so my business partner passed away with neuroendocrine cell cancer. I hadn't taken a vacation. I'm a startup guy. This is actually my fifth startup. You know all about that with your husband. I hadn't taken a vacation in six years. Now, I'm not proud of that but you get so caught up and you're working hard and you're doing the work. I went home to, at the time it was my girlfriend, now it's my wife, and I said, "We need to go somewhere. We need to clear our heads. Let's figure out what we're going to do next after we shut the business down." We just started going on vacations. We went on a bunch of trips. It was in the midst of this that we got a phone call. We were in New York City at a Broadway show. We got a phone call that her father was in the hospital. So we headed up there. At that point it was these two diagnosis and two deaths in a very short amount of time. It really got me thinking -what am I going to do next? What do I really, really want to do with my life? Jenny, my thought had always been at some point when I retire I want to give back, I want to do things with cancer patients. My mom was always actively involved with the LLS, we were doing Light the Nights, we were doing art auctions, there was always some sort of advocacy or nonprofit fundraiser to somehow benefit cancer patients. In fact we're on a membership committee for a nonprofit group that actually does extended stay away camp for cancer patients once a year to get them out of the hospital. We do arts and crafts and we have dances and we do other stuff. So it's really always been a part of the fabric of our family to do these things. As I started thinking about what was coming next I thought, why am I going to wait until I'm 40 or 50 or 60 or whatever time I decide to switch this on? I mean my father-in-law was 48, unfortunately, when he passed away. My mother was 52. My business partner was 62. It's not a given. I want to live as long as I can but there's no guarantee. So if I find that this is the most important and impactful thing I could do why am I going to wait another 20 or 30 years to do it? At that point it was sort of the genesis of SparkCures for us.
Jenny: Wow, Brian, what an amazing story. I'm just so impressed. You've taken a really tough situation and you've turned it into something so incredibly positive for tens of thousands of people. I really commend you. I think you might've really found the meaning of life pretty early on.
Brian McMahon: Thanks.
Jenny: Why don't you share a little bit about how SparkCures works and what it does for patients?
Brian McMahon: Sure. At the end of the day we help myeloma patients find eligible clinical trial options. That's the sort of 30,000 high level overview. What happens to get to that point is actually really complicated as it turns out. Clinical trials have a list of reasons why patients can join a clinical trial and a list of reasons why patients cannot participate or join a clinical trial. When I realized that I want to do something now to help cancer patients I started meeting with hospital executives, pharmaceutical people, nurses, doctors, patients, everybody I can meet to try to figure out where can we maybe add value because there are a lot of players out in this space where whether it's the Myeloma Crowd or any of these advocacy groups out there, there's a lot of value that's added. We were trying to figure out where is there gap in this, where is there something that we can do to really help cancer patients. One of things that kept coming up was clinical trials. I think given my experience with all the clinical trials and talking and realizing how difficult it was for patients to find trials, how difficult it was for trials to actually end up getting the right amount of patients to actually end enrollment and get to those end points they needed, I realized that there was really a big mismatch here between how patients are finding this information. So I was digging deeper, digging deeper and digging deeper. What we did was we thought let's just bring a nurse on board, let's start talking to patients and doing these matches and seeing what does it actually take to help a patient, one, understand because most patients don't even know that trials exist or they think "Well, I'm not sick enough," it's a measure of last resort or there are other concerns - placebos or guinea pigs or more practical things like who's going to pay for this? Can I travel to the trial site? How far away is it? What's going to happen during that? So we really wanted to walk step by step through and figure out what are the barriers to getting a patient informed and what are the barriers to helping patients make these decisions. It's probably worth noting here that it's really important for us -- we're trying to help empower the patient-doctor relationship. We're not coming back and saying, "This is the right trial for you. Here's what you should do." We want to go back and say, "Given where you are at your part of the disease at this point and given how you've responded to prior treatments and different things, here are the trials that may be eligible. Here's how you can have a conversation with your doctor to figure what might be good match." It's probably a good example to talk about the very first patient we ever matched. What we did was we brought this woman on board. She knew we were startup. She knew we were trying to figure this stuff out. She knew the story of my mother. She came on. The very first thing we had her do was search clinicaltrials.gov. I'm going to talk about clinicaltrials.gov. I don't mean to throw stones at those guys. I think at the end of the day what we're seeing is the system is broken. Everyone is trying to do their best to help solve this, and we think we found a way that really helps above and beyond what's being done right now. So the patient came on. We had them go through clinicaltrials.gov. At the end of that search they were left with 156 clinical trials which, again, is head spinning. We put them through our system. What we got it down to was 14 trials almost immediately. The way we were removing these trials was we were looking at lab reports, we were looking at lab values but we were doing things like -- clinicaltrials.gov oftentimes won't get updated. So what that means is a trial may have stopped recruiting patients six days ago, six months ago, six years ago but for some reason or another it doesn't get updated so it still gets returned as an active trial to these patients. The flip side of that is sometimes they're miscategorized. So what may happen is a trial that deals with a drug that has been used in myeloma might show up under a myeloma clinical trial search even though one of the top exclusion criteria for it is multiple myeloma. So there are trials that a patient could never even join that were showing up. So what we did was we got that down to 14 by removing all those ineligible bad trials, inaccurate, and we were left with 14. We decided we were going to call the trial sites, all 14 of them. We wanted to find out are they still open and accepting patients. So before we ever came back with the list of results to this patient we want to make sure they were actually running and could accept her if needed. I started calling on a Monday. Jenny, no exaggeration, come Wednesday I had to upgrade my cell phone plan because I've ran out of minutes. I was hearing things like "Who are you? How did you get our phone number? What do you mean a clinical trial? Can you explain what this trial is to us?" It was just really difficult. It was just this phone maze of trial sites and hospital systems and no one really knew who we needed to talk to determine if that trial was open or accepting or they would say, "Well, we'll just bring you in as a new patient and then you can talk to the doctor and see if that's real." Exactly. You're shaking your head because you know. How many patients can, one, spend the time limiting these down, making these phone calls? And then what are they going to do? Go to seven different hospitals to do that new patient intake without ever knowing if it's even actually open and accepting patients. We learned two things from this. The first was that of the 14 that we had, nine had either never opened up or it shut down a long time ago. It took us eight days to hear back from everybody, eight days of calling and calling and calling. So there really weren't 156 trials for this patient. There weren't 14. There were five trials. Again, how many patients have the wherewithal, have the time, have the understanding to really sort that down, limit that and then make those phone calls to find this out? The other side of this was we found that of those five clinicaltrials.gov, only returned three of them. So we returned two on top the clinical trials never even had. So effectively we almost doubled the amount of eligible clinical trials that this patient was presented with as options. It was at that point that we thought "Okay. We're on to something. We can really help patients here and we can help pharmaceutical companies and we can help hospitals. We can help everyone in this get access to the drugs that they need and help push research forward." That was really sort of the genesis moment where we thought "Okay. This is a go. How do we start building this out? How can we categorize all these trials to make it easy to search and to go through this?" That's really where we started which was just about a year and a half ago at this point that we did that.
Jenny: So how would a patient or someone go about using SparkCures?
Brian McMahon: There are two points to consider here. We found that a lot of patients were really comfortable which was kind of astounding to me. I mean it's typically an older population that is diagnosed with myeloma. There's really great patient. She's comfortable with me using her name. Her name is Carole Levis and she's a 28-year multiple myeloma survivor. She's just outside of the Pittsburgh area. She's been a big fan and a big supporter of what we've been doing. I called her out of the blue to introduce myself and to say, "I'd love to pick your brain. I'd love to share with what you're doing." I said, "I'm happy to this over the phone." She said, "I have my iPad. You send that up, we'll be good to go. I'm totally fine." She's emailing and she's doing testing out the process. We're finding that almost 40% of the visits that we're getting on our system are actually coming through iPads and tablets and mobile devices. So it's a little bit surprising for us on that side that this generation is picking up on these iPads and iPhones most likely for Facebook reasons but they're much more comfortable using these online websites than we really thought. So it's worth noting. Right now we're specifically and strictly online. What we're looking to do over the course of next year is build out nurse navigator. So you can actually pick up the phone and talk to somebody and have that personal connection which we think is a really important part of helping explain to patients, help them understand what clinical trials are and to talk through their fears and concerns, and then help make that match and help make those recommendations based on the data that we have on them. Right now we have partnered with Myeloma Crowd. We partnered with Patient Power. So we're doing all the clinical trial searches for these websites. So you can visit Myeloma Crowd, you can visit our website, it's www.sparkcures.com. Really, there are a couple of different ways. We wanted to make it so that it was incredibly easy to get through. So if you're at a support group meeting with patients and you hear something about a new proteasome inhibitor, you can go in there and you can find all the proteasome inhibitors and you can find those drugs and look at what trials are being run for specific drugs on our website. You can also go in and say, "I'm a relapsed myeloma patient." Based on your ZIP code we'll give you a list of all those trials. We also have what we call personalized clinical trial search, and that's where we ask some high level questions about you, about your disease, about your treatment history. From that we're able to come up with a qualified list of clinical trials that we help find. It's worth noting that we're spending a lot of time on the backend here calling these trial sites, making sure that the data is correct, that it's accurate, that we have the right contact information so that when you find the trial you're not picking up the phone just to get the phone maze or a disconnected number or any to those sorts of things. It's probably worth bringing up now too that we actually are launching the biggest update to our matching system in early 2016. What we've done is we've actually take into account all prior treatment histories. We've taken to account measurable disease requirements and lab values. So if you know what your creatinine is, if you know what your M protein is we're able to really finely tune these matches. One of the things we'd meet with a lot of doctors here at ASH and one of things we're sharing is that our system is really meant to be incredibly conservative. What I mean by that is this a lot information. For a patient, your head is spinning when you look at this. You might hear M protein and you go "I have no idea what that is." So our system actually allows patients to skip any questions that they're unsure about to no adverse effects on the back end. Although it may increase the number of results we're returning because we can't obviously limit down if we don't know, but we don't penalize patients for not being aware. The other side of that too is what we're calling internally our sort of "margins on lab values". So for instance, and I don't know if this is getting too technical or if this is in line with the patient side, but if a trial calls for an M protein of one, if a patient's borderline -- let's say they're .9, .8, the last thing we would want to as a company is make that trial ineligible for them, same thing on the creatinine side. We want to leave that up to the conversation and the knowledge of the doc. That's not our role to play. So what we do is we actually allow that to pass. We put a little warning on there and we'll say, "It was a little bit low on the M protein side but still within range. You're going to want to take a look at this." That way we're not taking away trials if it could be a borderline situation. So we're launching that in January 2016. The cool thing is on average if you go to clinicaltrials.gov and you search for trials as myeloma patient what we found over the past year and a half is you're going to get about 207 trials on average. We're able to get that down to less than 10 at this point with the matching capabilities that we have and what we put into place. So it changes that conversation. It's a dynamic or a drastic change to that conversation with the doctor to say, "Here's 10" instead of "Here's 150." We're working with our pharmaceutical partners to get a better understanding of what they're really looking for at each trial so we can get that down even further than that 10 number. I think we can still do a better job, and we're working towards that right now.
Jenny: You as a patient can search based on the status of your disease like if you've just been diagnosed or you're relapsing a therapy or some of the drugs just aren't working for you anymore, some of the standard drugs, right?
Brian McMahon: Everything. So whether it's myeloma or it's smoldering, it's MGUS, we have trials covering all those. The other side too is if you're listening to this you might go "I don't even know at my status is. I've never even heard that term." What we do is we actually have spent a lot of time working with patients and our advisors, and we have a really patient-friendly flow of questions. So for instance we'll start by saying, "Have you ever received treatment?" and you can just say yes or no. And then "Are you currently on treatment or are you on maintenance therapy?" We'll walk patients through this. At the end we never ask them what their status is but based on their answers our system knows what the status is and is then able to set those trials up. Same thing for a patient may not be able to say, "Well, I've had a prior proteasome inhibitor or haven't," if they're able to answer questions based on the drug names, our system is smart enough to know what classification the drugs are. And then based on exposure or nonexposure we're able to mark down and say whether they're appropriate for trials that either require or disallow it.
Jenny: So you're going to have patients who have been maybe on a proteasome inhibitor and it may not be working for them anymore, and they don't even know what that is because they're not sure what the class of drug is, they just know it by the name.
Brian McMahon: Exactly. If they say, "Yes. I've had Velcade," then we can go okay and we know what that's looking like, and we can set the backend appropriately and show them the right trials based on that.
Jenny: So how do you keep up to date on all of these trials? There's just so much to keep track of.
Brian McMahon: This is the hardest thing. Jenny, it's funny. We're at a point now in the company where it's really email-based at this point. The pharmaceutical partners that we have as trial sites the opening and closing and those things are happening, emails are flying back and forth. This site is opening up. Here's the timeline for this one. We need to find a really good way to manage this process. We're working with our partners now to do that. A lot of it still is picking up the phone and calling. I think that one of the biggest values, I would say, that we add to myeloma patients is time. As a cancer patient, as a caregiver we know how valuable time is, and the last thing we want to do is have a patient who spent two weeks trying to figure out what these treatment options are. Clinical trials are not going to be right for everybody at every stage of their disease but our thought is how do we help make people aware of what those options are so they're fully informed and they're aware of what those options could be, and then they can make those decisions whether they're newly diagnosed, untreated or whether they're relapse refractory, third relapse, whatever this is looking like. At every step of the way there could be an eligible clinical trial. We want to help them find that very quickly, very easily, have that conversation with the doctor and then they can make that decision.
Jenny: Well, you talked about the nurse navigator and that you'll be adding that soon. Is there anything else that you're looking to add in the future?
Brian McMahon: What we're finding is that patients want to get results right away. Before we used to say, "Well, you have to answer these 12 questions before you get your results." Now we're at a point where as soon as they answer that first question, we show them what the results look like. As long as they continue answering questions they're going to see those numbers going down and down. In this sense the smaller amount of numbers is actually a good thing for patients. They don't have to sort through that themselves. So it's things like that that we're learning to really improve that process for patients as they walk through this.
Jenny: Well, as a patient, I just have to tell you that this is by far the best tool that I've seen to find a multiple myeloma clinical trial. So I congratulate you on your hardware and what you've been able to accomplish so far. I think it's just terrific.
Brian McMahon: I really appreciate that.
Jenny: I'm just so impressed with how much you've done in such a short amount of time. I can tell you are a true entrepreneur. We've seen a lot of them in our family.
Brian McMahon: Thank you. That's very kind of you. I really appreciate that. It's worth noting too that a lot of what we do is really geared towards making this easier for patients to understand. A good for instance is not only does it matter what the distance of the trial site, it's 20 miles away, its whatever that is, but one of the big factors too is what's the obligation for the patient, how often are they going to have to go to that trial site because if a trial is an hour and a half away, if they only have to go once a week for three weeks and they have some time off or whatever it is, how can we help set expectations so they can understand how often they're going to have to travel aside from just "It's this far away?" We're doing a lot to put this in the terms that patients can use to really take action, and that's one of the biggest things. How do you take action based on this even if to say at this point clinical trial is not right for me? That's okay as long as we're helping to break that down and make this easier for patients to come to whatever decision they're going to come to, we think we're doing what's right for the patient then.
Jenny: So in myeloma, you're never really done with myeloma until we get a cure. It's in your best interest to look ahead and plan ahead and see what's possible and what the potential is for you for yourself personally.
Brian McMahon: Yes. I don't think I could say it better and I don't think I could stress that anymore. I mean you just really have to be an advocate for yourself. You have to keep pushing and get as informed as you can, surround yourself with people that can help, and go to those community sites like Myeloma Crowd where you can learn about what the research is, where you can reach out and hear from other patients and what their experiences have been, incredibly beneficial and really powerful especially for disease like myeloma.
Jenny: Brian, thanks for joining us today. We're so thankful that you took time out of your busy schedule here at ASH. I know it's a crazy conference and you're trying to get a lot done while you're here. We appreciate you taking the time to share a little bit more about SparkCures.
Brian McMahon: This is great. It's always good seeing you here. This is awesome. Thank you very much.
Jenny: Thanks for listening to this episode of Myeloma Crowd Radio, a show that connects patients with myeloma researchers and myeloma research.
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of Myeloma Crowd by HealthTree and the HealthTree Foundation.