Conversation with Evan Goldberg on preventing and curing BRCA cancers

We sat down with Evan Goldberg, the Charmain, President, and Director of the BRCA Foundation, to discuss his personal experience with the BRCA mutation and the motivation for launching a foundation dedicated to accelerating researching and fostering collaboration to prevent and cure BRCA cancers.

Evan Goldberg is responsible for product strategy and development at Oracle NetSuite Global Business Unit. Prior to Oracle’s acquisition of NetSuite, Goldberg was CTO and Chairman of the NetSuite board.

We’ve posted complete transcript of the podcast below. You can subscribe to Sequenced on Apple Podcasts, SoundCloud, Stitcher, and Google Play.

Dr. Kiki: Welcome to Sequenced, where we talk to healthcare influencers, investors, and advocates about the changing world of healthcare. This podcast is brought to you by Color, a health service company. And I’m your host, Dr. Kiki.

In this episode, we speak with Evan Goldberg, co-founder and CTO at NetSuite. He’s also the chairman, president, and director at the BRCA or BRCA Foundation. Evan, welcome to the show.

Evan: Thanks for having me.

Dr. Kiki: You’re welcome. I am absolutely thrilled to be speaking with you. Can you give us a little bit more details about who you are and the life that you lead?

Evan: Well professionally, I’ve spent most of my career building NetSuite. It’s a business software-as-a-service company, delivering business software, to help you run your whole business and deliver it in the cloud. It started it in 1998. We’re now part of Oracle, so it’s Oracle NetSuite, after 18 years. I actually co-founded it with Larry Ellison, and I started my career at Oracle. So, it’s sort of back to the mother ship, you might say. And since NetSuite went public in 2007, one of the things I’ve done since is to start the BRCA Foundation with my good friend, Cary Cole. The foundation is focused on research into BRCA cancers ultimately to eliminate the threat of BRCA cancers from individuals and families.

Dr. Kiki: Now, there was a personal impetus for you in starting the BRCA foundation. Can you tell us a bit about your own personal journey with BRCA?

Evan: When I was 34, I met my biological mother and father. I was adopted. And she told me, among many other interesting things, that she had had breast cancer twice and had recently found out that she had the BRCA gene mutation. And that were some medical information that might be relevant for me and my family. I had a daughter, just one daughter, she was two years old when I learned this information. And I just kind of shrugged it off thinking, in Silicon Valley style, that the version of humanity by the time she turns 25 will certainly have that bug fixed.

Dr. Kiki: Right.

Evan: But later, as she got older and I had another daughter and a son, I realized that maybe I could do something maybe to help accelerate that sort of bug fix. As NetSuite became successful and went public, I got the resources to help do our small part to help move things and accelerate things for BRCA families like my own.

Dr. Kiki: You were looking at it mostly as a father looking at the future for your children. We talk a lot about the BRCA mutation as the breast cancer gene, right. That’s what everybody knows it before. But it also affects men as well. Have you looked into or delved into your own probabilities for disease?

Evan: When I first learned that I have 50% chance of inheriting it, for men, it was relatively benign so I didn’t get tested. So I was pretty focused on the effect on my daughter, and then daughters. About the time that I started thinking again about this issue, as my daughter approached her teenage years and then I had a second one. I’ve also been lucky enough to, I have a chance to meet a lot of great cancer researchers. I’m on the board of the V Foundation, the Jimmy V Foundation for Cancer Research, and the head of the Scientific Advisory Board happened to be sitting next to me at a dinner. And I told him my situation, I was 46 at the time, and he said, “Oh, well, you need to get tested because you need to change your medical management. You need to do increased surveillance. You should already be getting PSA tests, etc.”

When all of this was happening, I didn’t realize that it also affected me. Also, I met other families. My good friend, Cary Cole, who is a colon cancer survivor, he’s, as I like to say, one day younger but much wiser than me. He found out that he had the BRCA mutation and he has a family with daughters and sons. So, I started to meet other families and realized that it affected men and women and started to look at the statistics that this was really going to affect a ton of people. So there was a personal motivation and there was sort of a community motivation.

The other thing is, working alongside this great scientist at V Foundation, I realized that there was a change in how cancer was being viewed as the revolution of genetic knowledge that they were getting about how cancers work, showed that maybe the old ways of classifying cancer is just by the sort of organ of origin that may have not necessarily run its course but may only be sort of one way and that there were new ways to look at cancer. I developed a scientific interest in what might be done if you looked at cancer along a different dimension.

Dr. Kiki: Right. You come from the math and data, the application of all this information into the business world. How did you take the lessons that you learned in the business world to apply them to cancer research and the BRCA foundation?

Evan: There was one thing that was interesting about NetSuite was because we were delivered in the cloud, it was known as that at the time, but we were delivered on the web anytime, anywhere. We could sell software to people all over the world. We could implement the software, get it working anywhere all over the world. And what we realized was there was this archaic way of dividing up the work of a software company and really in how you sell was very, very specifically. And it was Larry Ellison who I was working with closely at the beginning of the company who would encourage me to look at things in a different way. The old way of giving salespeople and people that implement that software the sort of territories, geographical territories of where the business existed or originated was archaic. That instead, what you should do is you’d get the companies that made things, companies that sold services, whatever the type of company, that would be yours and you’d have to kind of understand their business and try to understand how you might be able to help them. But really, a much more efficient and effective way to do this would be if you were selling maybe all over the country but only to a certain type of business.

Dr. Kiki: Right.

Evan: Your territory, so to speak, was businesses that sell direct to consumer through retail, for example. And you’d become an expert in selling and implementing software for those types of companies, instead of an expert in companies in the Bay Area, which are really may be a little bit different. If you look at the massive companies in the Bay Area or in suburban Washington, they are not really that different, but they are alike a lot of other companies in other places.

That notion of taking an archaic way of classifying work to be done and trying to reclassify it or look at it along a different dimension, which may develop insights that you wouldn’t have otherwise and will give you this kind of collaborations that you might not otherwise have. That informed this idea that maybe what the BRCA Foundation was trying to support and the collaborations that we were trying to do with researchers across different cancer types may be the wave of the future in cancer research. And again, I’m just a layperson, but I got a lot of nodding of heads when I’d talk about that sort of analogy with scientists that I met with.

Dr. Kiki: Normally, we talk about cancer of a tissue, right. It’s the breast cancer, prostate cancer, intestinal cancer, brain cancer, it’s all where it lives, the environment that it’s in. And what is this new perspective that you’re trying to get people to look at it from?

Evan: Just kind of quoting the scientists, it certainly is important where the cancer lives initially and what type of cell it develops from. But also, the cells are different in many ways but also the same in many ways. The mechanism that they use for certain types of biological processes can be the same across lots of different types of cells. The mechanism that they use to repair damage to their DNA is very similar across different types of cells. If they lose that ability to effectively repair DNA, which can lead to cancer, that biological mechanism is similar. If you’re looking at therapies or preventions that might attack that problem, which is exactly the problem that arises in certain cells if you have the BRCA gene mutation, these therapies and approaches may be similar even though the cells involved are different. This was really exciting to me intellectually. And I felt like, along with many, many other organizations that are trying to attack cancer, that we might be able to move the ball a little bit forward if we can help support research in people that are looking at it in that way. One of the things that I talked and I’ve asked, you go to a major cancer center and you go to the different departments and the different offices, and they say, “So and so is an expert. Or their expertise is lung cancer. Their expertise is breast cancer,” would there be a day in the future where you’ll seek, go to someone’s and on their so-called business card, or on their office plaque, it would say that they’re fundamentally an expert in BRCA cancers or cancers of DNA repair, that sort of thing. They certainly felt that that is a future that may happen given what we’ve learned about these types of cancers.

Dr. Kiki: With the BRCA Foundation, you’ve developed partnerships with various universities. Can you talk about which universities and the reception that you’ve had as you’ve approached these institutions?

Evan: When I first started looking at supporting this initially, it really was just my wife and I. Cindy and I donating to research groups that were doing, look like they were doing great research on BRCA cancers. I did my research and I found a couple different groups, and it wasn’t completely random. I looked at universities in the Bay Area where I live, and I looked at my alma mater. But the other thing that happened was in researching these and in meeting some of these scientists, I found that they were also just great kind of evangelists for the cause that I’ve talked about. It turns out that maybe the synergy that I kind of felt with them worked between them. These scientists at UCSF, Stanford, and Harvard have been working together and meeting periodically and aligning some of their research collaborations. Collaboration is a big, big part of what the reason for doing a foundation in this case. That’s where we ended up focusing our energies. There’s a lot of great institutions doing incredible research in cancer and in BRCA cancer in particular. Everybody’s got to find their place. That’s what we chose, and they have been doing amazing work in working together, which is super inspiring.

Dr. Kiki: The work that they’re doing. There’s a challenge — initially, you have these separate researchers in separate universities who are working on their little part of the BRCA problem. And they go to conferences and they talk to each other and maybe they collaborate on a study here or there. But it’s really trying to get all of the information together to come to some kind of conclusions that can affect treatment. Can you talk a bit about the obstacles that are limiting these breakthroughs and how data plays a role?

Evan: Data is definitely one of those. Ultimately, we want to prevent BRCA cancers, that’s what everybody would like. And to do that, you must be studying people with the BRCA gene mutation who potentially don’t have cancer, following them and seeing which ones do develop cancer, which ones don’t. Ultimately, if you have some kind of preventative regimen, you’re going to need to test it on them. So the first obstacle is that large majority of people that have the BRCA mutation in the United States don’t yet know it. And so it’s the advent of low-cost testing from companies like Color Genomics that’s potentially going to help provide significantly more data to these researchers. That’s one of the reasons that even though, you know, our primary focus has been giving to direct lead a research, we’ve also felt that it was advantageous to help people get tested and that that can, if they tell two friends and so on, in this case, two relatives and so on, it really is a virtuous cycle. The most important thing being, of course, that people can intervene and take charge of their own health. That’s the number one, obviously, reason that you want people to get tested. There’s other significant benefits in that this provides potentially more test subjects and more data. That’s one of the reasons that we’re excited about kind of the explosion of testing that’s happened over the past years.

Dr. Kiki: What kind of tools is your foundation helping to equip researchers with?

Evan: Well, you know, we’re just a small foundation, we just started. Fortunately, there’s a great community of people that are doing all kinds of things about BRCA. One of the first things that I discovered when I started doing this research, I found out that there was a family on the East Coast, the Grays, Mindy and Jon Gray, who would give in $25 million and subsequently, I’ve given over double that to BRCA research, focused a center at the University of Pennsylvania called the Basser Center. Actually through my biological sister, who’s also involved in my foundation, I was able to meet Mindy and she was incredibly welcoming. What we realized is that “This is a village who cares who figures it out.” That made it clear to me. When you’re in the business world, you’re use to competition and mostly, you’re on your own. That shouldn’t be true for foundations and philanthropy in general because we’re all really going for the same thing, and it’s not about us.

If you think about tools, one of the first tools I really got interest in was using collaboration as a tool. Not only collaborating and asking our researchers to collaborate which foundations have that power. Even though there might be some degree of friendly competition between these institutions, more can be done faster by collaborating. It’s definitely gotta be a mix. And foundations have some degree of leverage there. Similarly, you must locate it for yourself and say, “What can we do collaboratively?” I think one of the most successful things we’ve done at the foundation is build a collaboration between the Grays, ourselves, and the V Foundation for Cancer Research, which is a 20-plus-year-old foundation that actually has a strong connection to BRCA.

The Valvano family, Jimmy V, the basketball coach started the foundation, died with cancer early. Their family was affected, and likely, Jimmy, was affected by BRCA gene mutation. His daughter spoke publicly of this and that she got tested positive and her mother was tested negative, which makes it likely that her father had it. That just seemed like a completely natural collaboration, and together, this year, we’ve raised over $7 million for cancer research. One of the best tools, as I’m sure all the researchers will say, is just that money and the resources that they need to do these studies and to hire promising young investigators. So that’s part of it.

The on another front, we’re just getting started and trying to experiment with how can we help contribute to more data. We’ve been talking to lots of different organizations that are building up data about BRCA individuals and BRCA cancers, tumors. What we’ve been experimenting with, and it’s just starting, it’s just a proof of concept, is developing a registry of interested individuals that are willing to be fed information about potential studies that they could help contribute to research. Individuals that typically may go through Color or can present other test reports showing that they are BRCA positive can enroll in the registry. It’s not really a medical registry, it’s more just communications vehicle for us to present to them. That’s just something we’re getting started with, which really, it was hearing from the scientists that they wanted to do these long-term studies of BRCA individuals that did not have cancer yet.

And ultimately, it’d be great to understand environmental influences. Certainly, we want to prevent BRCA cancers and take a pill or whatever it is, a little nanorobot goes to your body and fixes all your gene mutations. That’s science fiction right now, but eventually, I feel confident that individuals born with the BRCA gene, either they won’t be born with the BRCA gene or we’ll be able to save them from the deadly effects of cancer. But in coming back to the immediate reality, women want to intervene in their health and prevent cancers have to undergo significant surgery with potentially significant side effects and all of that. Understanding the risk factors, it really comes down to the numbers to really be able to advise women what might be the right appropriate age to take that intervention. That’s something that we can do right now and have a huge impact. Every five years that a woman feels comfortable postponing the surgery is five more years for us to find less invasive prevention.

If we understood the environmental influences on cancer by doing BRCA cancer research, maybe there’s ways that BRCA cancer is promoted by lifestyle factors, that it’s different than other cancers. You need numbers, you just need large numbers of people. Maybe early detection is the first step before prevention, and it’s huge. You get a cancer early, like ovarian cancer, which BRCA women are at significant risk for and is still a very deadly cancer. You catch that early and it’s highly curable. There’s an enormous opportunity there, especially if women know that they’re BRCA positive, then we can be doing testing of other types of early detection that may not be cost-effective for women without BRCA but turn out to be very cost-effective for women with it. That would be huge and could save a lot of lives. There’s a lot of exciting stuff that we can do right now just if we have the data in place and the individuals that are kind of willing to participate in studies.

Dr. Kiki: Going back to that. There’s a certain aspect of personal genetic history that you know from your ancestry. For many people, you’d look at your parents, you know that your mom had breast cancer or she didn’t have breast cancer, you know that your grandmother did or did not. How does adoption come into that? And how can we reach out to that community of people to get them more involved in this process?

Evan: Well people are learning more about their ancestry, and that can help because we do know that certain populations have a significantly higher prevalence of BRCA. People that are adopted find that they have Ashkenazi Jewish ancestry, however they find it out, but now increasingly, they’re finding it out potentially through genetic testing. They’re candidates to do further testing for BRCA mutations. That’s a big opportunity. I do sometimes think about what would happen if my biological family had not contacted me, would I have ended up taking a BRCA test? I don’t know. But potentially, eventually, I would have done one of these other tests and found out that I really was.

When my biological mother wrote me a letter, and father, they wrote me a letter, though I know my mother wrote it, Mike, I don’t mean to offend you, but she writes a really good letter, they’re married. It said that I was Ashkenazi Jewish but I was raised Ashkenazi Jewish. But my wife, who has Italian in the background, said, “You don’t know, you might be Italian.” But it was same same. As an adopted person, I think I probably would have tried to eventually. I never sought out my family, but I think I would have probably sought out my ancestry, and potentially, I would have maybe thought and probably would have gotten involved in cancer research. My adoptive father have a cancer, my wife’s mother had cancer. So we had a connection to cancer anyway, as most families, almost all families do.

Dr. Kiki: Yeah, most do. I think it’s fascinating. I remember being pregnant and going through the counseling and check your ancestry and try and find out, “Is there any Ashkenazi Jew in your history,” because there is a higher prevalence of certain diseases with that heritage. I was looking at my husband and, at that time, we hadn’t done any genetic testing. He said, “No, I don’t think so. I don’t think there’s any.” We went on with the counseling according to that information set. Later, we did a genetic test and found out that his mother is a very significant percentage Ashkenazi Jewish. That could have changed a lot of the counseling outcomes. For us, it was a question of curiosity which led us to the testing. What kind of barriers do you think people have in accessing genetic testing, and how can we maybe improve those outcomes?

Evan: Well, you know, I can just give sort of the anecdotal things that I’ve seen, and there are definitely, and I’ve encountered individuals then, this person knows who I’m talking about, who have said that, you know, “There are some things better left unknown.” And you do find out some things that could be troubling, and I think that’s a barrier. Some things like let sleeping dogs lie, so to speak. But I think that it’s super important because one of the things that’s been used before, there was easy to access genetic testing to decide whether a woman should get the BRCA test was if she had a family history of cancer. And men can have cancer from BRCA but it’s more common on women. Imagine, you come from a family that has mostly men. You have brothers and uncles, etc., and you might not, you know, not all women with BRCA get cancer. So if there’s a relatively small number of women in your family or they died of something else potentially, you won’t know that. And so, I think that it’s really great that there’s other ways that we can sort of look and see whether an individual might be at risk.

Dr. Kiki: Can you tell us about the BRCA Foundation’s family testing program and what its aims are?

Evan: The number one priority is that there are a lot of men and women who don’t know that they have the BRCA gene mutation and there are things they can do now to take charge of their health and potentially prevent cancer or catch it early, and it’s curable. That’s number one just from an altruistic philanthropic perspective. That’s what we’re thinking about with the family testing program. Let’s make it easier for people to get tested and let’s make it not a barrier. The BRCA Foundation has contributed to a program at Color Genomics, where individuals that are first-degree relatives of those that have a kind of proven BRCA mutation can get very low-cost testing. Whereas, for most of the population, you know, it should not be a financial consideration that gets you to do it or not. I think that the number one reason is just that more people will be able to take charge of their health and it will save lots.

I do believe that there’s a lot of other benefits that come from people learning their genetic situation, potentially being able to contribute to studies. It builds a bigger community of people that are concerned about this problem, and there’s no doubt that that helps everybody. Ultimately, the BRCA mutation will not be an orphan disease if everybody in the United States has BRCA gene mutation find those that they do.

Dr. Kiki: Knowing is half the battle towards prevention and treatment. What is on the horizon for your efforts in the effort to prevent and treat and cure these genetic cancers?

Evan: We had a big win this year with collaborating with the Gray Foundation and the V Foundation, and that’s something that I want to explore continuing in the future. This collaboration resulted in over $7 million in money for BRCA research, and the plan is to issue a number of grants. Some are grants to individuals and some are grants to teams. And the applications that we’ve gotten have been amazing, way more than we could possibly fund even with that large amount of money. There’s definitely a hunger out there for the resources to drill down more into the many, many different things that we’re learning about BRCA cancers. In the larger picture, cancers that affect DNA repair, inherited genetic cancers of other types, and cancers that exhibit some of the same attributes, and then also, in the bigger picture, just looking at cancer in this new way. There’s really a hunger and there does seem like we’re on the road to someday to having researchers that think of themselves as experts in not a particular organ of cancer but a particular sort of type of cancer. And that cancer really is a series of genetic diseases.

What I saw in response to our call for proposals showed me that there’s a lot more opportunity there. I want to continue to explore how we can collaborate with other foundations like the Grays and the V and others to make sure that all of this great work, all these great ideas get funded. And these young investigators that are withering on the vines from some of the decreases in funding from traditional sources, that they can sort of cross the chasm from a great idea to something that you can show really as worthy and significant more investment. That’s something that we’re really excited about is funding those young investigators that really need that to stay in research and to be able to make their ideas come to fruition.

Dr. Kiki: Are you optimistic? You’re looking at your own future, you’re looking at your daughters’ futures, your son as well. Are you optimistic this direction that things are going that you’re helping to push forward on?

Evan: Yeah, I am. I have a more clear eye view now that I’ve seen what’s happened over the 16, 17 years since I first learned that my family might be affected by this. You always overestimate what you can do in the short term and underestimate what you can do in the long-term. So that certainly gives me a ton of hope. I’m optimistic just by knowing the situation in my family that we can take proactive measures. We’re already a step ahead of unfortunately many other families that don’t necessarily know this. But ultimately, the thing that gives me the most optimism is when I sit with these researchers. They are so committed, they are so brilliant, they are so open. I mean, the fact that we’ve gotten UCSF and Stanford to collaborate provides me with boundless optimism. And there really are some great advances that are being made right now.

PARP inhibitors, which are one of the most exciting new types of drugs that have been approved in recent years, are extending the lives of women that really had a desperate outlook. Women with significantly relapsed ovarian cancer are now, in some cases, getting really durable remissions when that was just not in the cards a few years ago. That’s super exciting. You could take it a step at a time, but because of the research that these institutions have done, the outlook for cancer patients and BRCA patients and therefore BRCA families, is already significantly better.

Dr. Kiki: That’s wonderful. For those who are potentially interested in finding out more about the BRCA Foundation, supporting its efforts, or maybe just trying to follow along with the journey, how can they find out more information?

Evan: We have a website, of course, brcafoundation.org and a Facebook page, and we have a Twitter feed, so all the usual stuff. And you can sign up for our newsletter and we send it out periodically, not only with what’s happening in the foundation but what’s happening overall in the world of BRCA research and some of the exciting advances that had been coming along. Of course, we’d love for people to help with contributions.

We are kind of focused in three different areas as a foundation, and certainly, all of this is in the context of collaborations. Young investigators identifying, and we’re working right now with these three institutions. They have a ton of great stuff going on, a ton of great young investigators, big data, which we’re just starting to get our feet right in there but we do think we’ll have some projects in that arena. We’re in the research space but we think some tons of exciting stuff going on there. And placed here in Silicon Valley and bringing together tech expertise in big data and business expertise and engineering expertise and all those disciplines to attack the problem from a lot of different angles is something that we’re huge believers in.

Finally, we’re really excited about genetic counseling and actual centers of excellence for patients with inherited cancer, including BRCA gene mutations. There’s one at UCSF that we’ve raised money for and we’re helping fund and help establish the center for BRCA research. We’re looking at those types of initiatives at Harvard and Stanford, so that’s another focus for us. They are obviously a great help for patients, and if you turn out to have a BRCA mutation, that you could go to a center with a doctor that is a world expert or has enormous expertise in all the different types of cancer, BRCA cancer, all the different types of regimens, surveillance regimes, etc. But it’s also a place where studies can be done, where we can learn more, where we can try new preventative efforts or new types of therapies.

It’s really this sort of virtuous cycle that comes from testing and then people getting treated at BRCA centers and researchers getting more information and building a community of people that are gonna help cure BRCA cancers, prevent BRCA cancers. And I do believe we’ll ultimately help all types of cancer sufferers.

Dr. Kiki: We can only hope and we can count on science leading the way to the future. Thank you so much for joining us today and for your efforts to help combat the BRCA mutation.

Evan: Thank you very much for having me