Walid Khiari & Marty Tenenbaum - Kids & Art Fireside Chat
/At our 2019 Networking Fundraiser, Walid Khiari, Managing Director Rothschild & Co and Marty Tenenbaum, Co-Founder & Chairman, Cancer Common & XCure discussed how Cancer Common connects cancer researchers, doctors, patients, providers and pharma with the goal of tightly integrating clinical care and clinical research data.
We thought that several interesting points were brought up and provided this edited transcript to expose their conversation to a wider audience.
“We need to figure out what’s best for that kid and then be able to very quickly learn from that kids experience what to do better for the next patient in a continuous learning process where each patient is informing the treatment of the next patient in real-time. The system is just not set up to do that today.”
Walid Khiari: I'm here for two reasons one is that our dear friend Talia Coyne who asked me how it could be helpful to me the organization and my first reflex was to say one organize an event in my office 555 Street in downtown Palo Alto she took the invitation and then Wilson since he beat me with some better catering. So you know well and thank you very much to Wilson since either great law firm we work with them on many of our transactions and they're also very people with the great values across the firm.
We're really lucky to have and I'm particularly lucky to be interviewing Marty today. Marty was one of the architects of the modern Internet he was one of the cofounders of a company called Enterprise Integration Technologies which basically was the first company chartered specifically to monetize Ethernet. That was in the 1990s, things we take for granted today you know they HTTP when you type a website, e-commerce building blocks such as payments and deliveries. We owe that to Marty Tenenbaum and his team at that company. He then went on to start several other startups. He's an active board member here in Silicon Valley, is also a PhD from Stanford.
So you could call Marty a Silicon Valley person which is great and it's great for a technical like myself. That's one of to many reasons one Marty's here today. The other reason he's here is because he's also a founder and chairman of an organization called Cancer Commons which is a nonprofit organization that networks physicians, patients, and researchers. Newsweek refers to the organization as the LinkedIn of cancer, is probably better than the WeWork of cancer.
So first question for Marty if I may, is what does that mean to be the LinkedIn of cancer?
Marty Tenenbaum: I think that's simply trying to network all of everyone who's involved in cancer, doctors, patients, researchers, and the bigger network that supports them providers, payers, pharma, and what have you. Because if we're going to make some headway on cancer no one organization can do it alone, and as Neil pointed out we have to be able to capture the data from every patient being treated on every in every possible way in order to be able to figure out what to do next for the better for the next patient. Sadly even having all of the data in the world might not be enough. They just don't know yet.
Walid Khiari: You've got obviously a very personal story as it relates to cancer. As a cancer survivor what is it in your own fight that you consider as the main reasons why you're with us today?
Marty Tenenbaum: Some combination of being smart and well networked and lucky. 20 years ago or thereabouts I was diagnosed with melanoma metastatic delivery that was before any of these immunotherapies or targeted therapies were available. This was a death sentence. Ultimately, well, I went to all of the local oncologists here and if I had listened to any of them I would be dead.
I was fortunate enough to have paid it forward. I was doing some consulting for the National Cancer Institute and the director of the NCI put me in touch with a fellow who was running the melanoma therapeutics program and he introduced me to additional doctors on a national scale and the choices that they were giving me were far more interesting and more likely to work than what I could experience locally.
“two things that every cancer patient who has exhausted kind of the science will soon find out is that there’s no general agreement on what you should do. Everyone has a different opinion and there’s no way to really find out.”
But the two things that every cancer patient who has exhausted kind of the science will soon find out is that there's no general agreement on what you should do. Everyone has a different opinion and there's no way to really find out. The data isn't readily available and the knowledge isn't readily available. In fact there's no one today who knows the optimal way to treat any cancer with all of the therapies that are currently available, and I'm including the mostly approved therapies and investigational ones.
The reason is that advanced cancers almost always have to be treated with a combination of drugs, a regimen right? If you think about it a very large number of the possible combinations, an explosively large number. There are far more interesting things to test, where there's a rational reason to try to test them, than there are patients on the planet to populate traditional clinical trials. So in order to be able to some progress we have to find a more efficient way to learn faster, cheaper, and that really puts the patient first.
That's the common theme that you'll hear over and over again. That goes for every one of the kids that benefit from the art program. These kids need, at least the ones who are not responding to us, and therapies we need to figure out what's best for that kid and then be able to very quickly learn from that kids experience what to do better for the next patient in a continuous learning process where each patient is informing the treatment of the next patient in real-time. The system is just not set up to do that today
On the Current Clinical Research System.
Walid Khiari: By system you mean the overall healthcare system or maybe?
Marty Tenenbaum: Overall let's say clinical research system. I mean then in a sense what I'm trying to say is that we need to very tightly integrate what goes on in the clinical research world with what goes on in the clinical care world so there's no daylight so that we're continuously learning from every patient on every treatment all the time. That is not something which the medical establishment by that I mean my friends at Stanford, there's many of you in this audience or UCSF, right it's a real challenge or the VC's that are willing to fund this kind of stuff against the prevailing wisdom. Right we need to be bolder to present community and the people who are going to drive that I couldn't agree with Anil more ... it's going to be the patients. They're the ones who have skin in the game. Urgent, we can't wait. The kids certainly can't wait.
So how do you go about empowering patients, empowering all of us, and our children to take charge. It starts by one patient at a time saying what's best for that patient. So the clinical trial system as it's set up today is focused on getting drugs approved and and we have some marvelous drugs that come along. But as I said the challenge is not so much the individual drugs, it's how to put them together into a regimen which may be very unique for each patient. But the challenge is that a system that's set up to approve drugs you have all these trials competing for the same pool of patients and they're competing greedily. The problem, it's a deep problem and maybe even an ethical problem is because I'm a good candidate for your drug doesn't mean that your drug is the best treatment for me. So we've got to turn the whole system on its head and rethink it in a patient focused way where the goal is not to approve drugs but to cure patients.
If we build a system like that let's [Applause] start with a system that is primarily focused on each individual patient right and then we continuously learn it becomes very straightforward. Everything becomes a line because the goal is if something's working put more patients into it and don't put the patients into things that are not working. You've heard the term fail fast. So if you don't have a drug that's like winning against other drugs you know you'll only lose in the market later anyway, cut your losses go do something else. But for the sake of the patients let's get a system that's efficient.
I can say this too because I probably will forget to say it later if any of you have a loved one who is dealing with cancer come see us at Cancer Commons it's a 501c3 everything is supported by philanthropy. [Applause] You'll get advice that you won't get anywhere else in the world. One more plug, Sherry Sobbrato is a big hero of ours. She's a big supporter of cancer comments - thank you
Walid Khiari: So as a tech banker who works with companies that scale and scale up quickly ... how does one scale up a network like this?
Marty Tenenbaum: Well, I think the good news is that informatics and information technology is the key. If you have something that's helping a patient and maybe you've done deep research to help that patient. Just perhaps that solution may help you know ten other patients who have similar cases or maybe a thousand other cases. We have to figure out a way that's more efficient to get the word out that 17th century technology and by that I mean journals, conferences. The medical world still depends on a system that was devised for in the 1600s for the British..you know the Royal Society which was revolutionary then. Now we have knowledge which is you know millions of times more knowledge, that changes thousands of times faster, something like that the old system can't possibly work. ... To read a medical paper which goes on for 20 pages where there might be a few sentences of actionable information buried in there. Right we've got to be able to do better. We've got to be able to get that information to the point of care where it's needed: based on here's the patient, here's the data from Auntie Ola, wherever it comes from. What information do I need to try to treat that patient better based on a whole world's collective knowledge?
Walid Khiari: Fantastic, you've been in the capitalist environment most of your career. You're now running a non-profit. Is it either or?
Marty Tenenbaum: I'm gonna take this out on layers for you. So the first thing is that nonprofits are uniquely good for some things. They're very very good as a trusted source of information, completely objective. We don't have any horses in the game. We're just trying to do better for the visions. We also have convening power so no one organization can transform the system. Nonprofit or for-profit, we've got to bring everyone to the table.. and so Cancer Commons was named Commons right to be this common ground to bring everyone together, to build the system that needs to be built, and that includes everyone including the payers, the providers, and regulators, everyone, and the little startups and the big, and the capital sources. But philanthropy and philanthropic type organizations have their limits. If I said that informatics was the key to be able to scale things that's not something that nonprofits are very good at developing.. software. So last year about 18 months ago Cancer Commons actually spun off a for-profit company. The name is X-Cures with an S added after to develop the software and services to scale the end of one personalized recommendations patient navigation that we knew in order to be able to not just help many other patients, you know 10 to 100 patients who have similar cases, but to be able to capture what those patients did, and how it worked, in order to be able to drive learning of the whole, and not to just do it for Cancer Commons. But, to do it for every organization that's trying to do what Cancer Commons does and to build this Learning Network. So in order to be able to build that network though not only do we have to get everyone to the table but we have to get everyone to agree on certain standards, and standardized agreements, and processes for being able to share data.
It's not just that I'm building this ecosystem and platform to benefit Cancer Commons. I'm building this platform in a many-to-many sense so that everyone who chooses to be a member of it can use the whole platform for whatever they want to do as well. But everything tied to the learning system so everyone is continuously learning.
Walid Khiari: Thank you I think Marty's very humble about the achievement or the organization so I mentioned three numbers: Cancer Commons has helped 5,000 patients over the last ten years in about 70 countries so quite a remarkable achievement. I think your your experience as an entrepreneur in tech is really going to help push the organization for specifically as it scales up.
Let's switch gears and talk about children which is why we're here today. I can relate to my own personal very humble situation. I'm lucky not have to deal with cancer in my family but we have a trilingual home. I speak French to my children. There are nine and seven year old daughters. My American wife's speaks Spanish to them and they learn English on the playground and at school. Our pediatrician very early in the life of our daughters give us an incredible recommendation, which was to say art. And art for what? Art to understand. Art to settle. Art to it's not a virtual abstract. and Art to communicate to center yourself. What we found is that we owe and their names are Kamila when it occurs by Mimi, and Sloan it was by Lulu. We've always allowed them to have fewer activities. Some of their friends when they would have four, they would have three. When there were three, my kids would have two, to clear the time for them to spend with paper with brush to really express themselves. So I can comment this from the perspective of somebody who's seen children really develop through art. I've been lucky enough that they don't have to deal with this type of disease but in your experience what is the power of art as it relates to curing oneself?
Marty Tenenbaum: I think there's many things we can say about that. As a scientist I'm very interested in really trying to understand what the vehicle is by which this happens. Traditional clinical trials are certainly much too expensive to run a study like this. But the kind of system we're talking about just as easily figure out where art fairs and for that matter other types of expression, music, dance, whatever. The things I know which are very relevant is that, a child, a family, any cancer patient who takes an active role in making themselves both more actively engaged in their treatment and healthier, emotionally healthier, It's going to help, you know, he's going to do better right. Whether that comes from art or a support group or whatever. I think that art in particular for children has unique role to play ... which I don't know that it's even been explored. I've talked to some of the project managers here tonight in thinking about this. I haven't thought about it, you know very deeply yet but I'm thinking that it is known that visualization is a very powerful tool and cancer patients that have consciously visualized what their immune system is doing for example the white cells eating up the cancer cells for whatever reason do better. I would like to understand how we might use art to help kids understand what they're going through, understand what their treatment is supposed to do, and move toward the visualization, as a way to help get their body everything in their body. The brain is a very powerful organ right and to unleash the immune system on attacking these things. So I'm a big fan of trying to understand what's going on and maybe data is the answer here too. The one thing I would say, yes it's been said several times, we have to treat the entire child beyond the diagnosis. This just doesn't mean to do art beyond the thing. It also means for example that every kid who has benefiting from the art might also benefit from the types of navigation services that are done in organizations like Cancer Commons. We should figure out how we can make use of this network right bring everyone to the table to reinforce.
On Clinical Trials
I have one other important thing to say about pediatrics, in pediatric oncology in particular. Everyone points to pediatric oncology as the stunning success in cancer research. When people talk about the dramatic improvements that have been done over the last 50 years they're almost always talking about what's happened in pediatric indications like leukemia where in the old days 15 percent of the kids survived and nowadays it's 80 85 90 percent 95 percent. That was done with many many incremental steps, small steps getting better, and better, and better over an endless chain of clinical trials.
Unfortunately I think that this particular path is certainly seeing limited returns if it hasn't hit a wall.
The reason why is because first of all when you have 90% of the kids you know doing well under the standard therapy, no one wants to go into the clinical trials unless they have to and then they're very late stage and maybe they don't work so there's an issue there.
The second is that in the old days we talked about leukemia as a disease we didn't know that there were like hundred types subtypes there may be many more of leukemias. We had like ten therapies that were used in all of cancer and maybe a few that were used in the blood cancers that were used over and over again. So there was actually a very small space of experiments to be done. There was 10 cancers. Leukemia was one, and so was brain, and colon, and skin cancer, and so forth. There were like 10 therapies so 10 by 10 box, you had a hundred cells, a million patients a year who got advanced cancer in the US, so that's like 10,000 patients per cell and there are lots of clinical trials.
Today if you have hundreds of types of leukemia and you have your not 10 cancer therapies but hundreds of therapies that could be combined in tens of thousands of plausible regimens, you may have a hundred million boxes and you still only have a million patients that's a good news. But you can't run this trial system the way it's been run. Kids is where it's most acute because fortunately not a lot of kids get cancer and today there's twenty openings in every pediatric oncology trial for each kid so most of these trials are going to fail not because we know whether the drug works or not, but because we don't have enough patients to find out. That's going to be a comeuppance for the investment community that is invested in all these companies and running these trials. This is just the tip of the iceberg because things are about to get either much better or much worse depending on your view.
I remember a very interesting law that passed a couple of years ago, a big breakthrough actually, the patient activists pushed through that said every adult drug that has a rational reason for being tested in pediatric communications needs to be. Because these markets are small and not a lot of people develop drugs for the kids so the kids are left using adult drugs didn't repurpose.
The challenge is that the law requires these drugs to be tested in trials. But it was already 20 openings and now there's going to be an infinite number of openings we're really going to get screwed. So the type of system transformation that I'm talking about becomes mandatory and pediatrics is probably going to be in the lead because the just the sheer limitations are going to force the system to change. I'm proud to say that I'm on the front lines of that good well
Walid Khiari: Thank you very much Marty.
Marty Tenenbaum: Again anyone who's dealing with cancer come see me and for the kids let's do something together.
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