Preventative Testing for Everyone

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NewCo Shift Forum

By routing around insurance companies and going direct, Color Genomics wants to help everyone get the health data they need

Jill Hagenkord

Continuing our focus on innovative health companies that are changing the game in their industry, earlier this year at Shift Forum we heard from Jill Hagenkord, Chief Medical Officer at Color Genomics, a preventative genetic testing startup. Hagenkord was drawn to Color because of its mission — to bring vital and potentially life saving information to health consumers who previously were left in the dark due to our bureaucratic “sick-care” system, which focuses only on addressing illness, instead of preventing it. Below is Hagenkord’s presentation, along with a transcript, edited for clarity.

Jill Hagenkord: Hi, thanks to Shift for the opportunity to speak here and to represent Color. My background is as a board certified pathologist. I did two fellowships after that, one in molecular-genetic pathology and the other in pathology-oncology-informatics. My Chairman said to me, “Jill, why don’t you do a real fellowship. You’re never going to get a real job.” And I lucked out. I was training myself to do precision medicine before we had the phrase “precision medicine.”

What we do in molecular genetic pathology is we specialize in looking at the DNA and RNA that’s in tumors, trying to figure out what drug the tumor would respond to, or looking for the nucleic acids that are from infectious agents that are in the human body, or for looking at the germ line in a human being and trying to determine what inherited diseases they may be at risk for.

I started off in regular academia teaching residents and med students, and practicing pathology. In 2011, I came out to Silicon Valley full time. I got frustrated with the incumbent healthcare system in the United States, it seemed really fundamentally broken and it seemed impossible to fix it from within. I trained at Stanford for med-school and had met a lot of people who had gone on to become entrepreneurs in the area, following the companies that rose up in the 2000s, where we saw the rise of social media and e-commerce, and I thought, these are the things that we need to start applying to healthcare.

A healthcare consumer should be every bit as delighted as a Zappos.com customer. The only way to do that is to get out of the system. I took a gamble and I came out here to work with various tech-based companies who want to fix healthcare. I joined Color in November of last year, and It’s actually a great fit for my background and interests.

I just have a few slides. I’m going to explain why preventive genetics is now possible. I’m going to give a couple examples. Then I’ll tell you a little bit about what we’re doing at Color.

This (slide) is why preventive genetics is now possible. At the beginning of my career, we had older technologies to do sequencing. It was incredibly expensive and cumbersome. In medicine, we used sequencing very judiciously and very sparingly. We’d wait for people to get sick and then we would look at them and describe their signs and symptoms and then we would give them what we call a “clinical diagnosis.” Very rarely did we have the opportunity or the luxury to go look at their DNA.

What we can do now over the course of really just 10 short years, is instead of waiting for people to get sick, we can look at genomes of healthy people and predict who’s at very high risk of getting sick. And we can do this at a consumer price point — because our healthcare system isn’t going to pay for it. Our insurance system isn’t going to pay for it, because we built a sick care system in the United States. Typically, your insurance isn’t going to cover your testing unless you’re already sick. So the only person who cares about prevention is you. The only person who’s motivated to care about prevention is you, and maybe self-insured employers because you’re going to be there for a long time and they want to keep you from having an early heart attack or early cancer because then they’re on the hook.

Once you recognize that, and once you get this stuff down to a (lower) price point, that really changes the channels that you can reach out to with preventative opportunities. Like self-insured employers, in addition to providers if they want it, and consumers if they want it.

This (slide) is an article that came out in 2013 from “American College of Medical Genetics and Genomics.” They said, OK, now that we’re sometimes doing exome sequencing on pediatric cases that are diagnostic oddities.We don’t know what’s going wrong. When you’re looking at somebody’s exome or genome, you’re looking for intellectual disability. So fine…Go look at those genes. But also every single exome that you do, here is 56 genes that we know for sure are associated with adult onset preventative disorders that have well established guidelines for prevention.

Examples of these are like hereditary cancer syndrome such as BRCA, the BRCA genes or Lynch Syndrome, which is hereditary colon cancer. Some of the hereditary cardiovascular syndromes, like if you hear about the young athletes who dropped dead in the basketball court. Inherited high cholesterol, this is actually very common.

We only diagnose about one percent of (these diseases) in the United States because our system is fundamentally broken. It doesn’t have the right incentives and motivation to tell these people that you don’t have guardrail cholesterol, you were born with high cholesterol and you’re exposed to it every day of your life so that by the time in your 20s, you’re at 80-fold increase risk of having a cardiovascular event compared to someone who doesn’t have FH, and 50 percent of your kids have it, and they’re born with it. We lose decades of opportunity for preventive interventions. Those kids should be on statins by the time they’re eight years old.

There’s some other “dogs and cats” that are on that 56 gene list, but those are the big ones. It’s a framework for starting to have to think about advancing preventative opportunities and incentivizing the right partners. Color does work with large self-insured employers. People like Visa, Salesforce, Grail. No genetic testing company had ever really done that before. We’ve found a really receptive audience there. The flagship product that started off the company was a 19-gene hereditary breast and ovarian cancer screen. It costs $249.

This test just a few years ago was $4,000, and offered by one company who owned a patent that wouldn’t let anybody else test for it, so they could keep the price artificially high. The case went to the Supreme Court and they lost the enforceability of their patents which allowed companies like Color to come on the market with all these new technologies, dropped that price from $4,000 to $249.

We then increased our genes to 30 hereditary cancer genes that goes across, not just breast and ovarian, but all of the common inheritable kinds of cancers. All of these have actionable preventative opportunities to prevent people from getting sick in the first place. You can see the direction that we’re going to take the company to continue to expand these preventative opportunities.

The other thing that the company is doing that you don’t see in our healthcare system, because there’s so much privacy laws in our incumbent healthcare system, is — if I know that my patient is at risk for getting breast cancer, I can’t tell any of their family members about it. There’re privacy laws.

S0, what we can do instead is use the power of social media and the Silicon Valley pixie dust to incentivize the proband [a person serving as the starting point for the genetic study of a family] to become a champion for their family — and to use social media and e-commerce, and “stickiness” to try to engage the other family members, and to start to practice family medicine and get them tested as well. We offer that family member testing for $49. Those are the ways that Color is really advancing opportunities for preventative care.

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