“Change happens because people say to themselves that this is worth losing for.” —Barack Obama
SAN DIEGO—To a standing ovation, former President Barack Obama walked onto a stage lit with glowing strips of coral-orange and a backdrop of soothing electric blue at the inaugural Illumina Genomics Forum, held at the Manchester Grand Hyatt in San Diego, California.
The conference room was packed with about 1,000 attendees, including Nobel Laureates and biotechnology pioneers (former Illumina CEO Jay Flatley was seated next to me) to young researchers. For nearly an hour, we listened to one of the most notable voices of the past two decades highlight the event’s opening day, discussing various aspects of healthcare.
Obama’s headline appearance at the Illumina Genomics Forum followed a lineup consisting of a unique audio-visual interpretation of the genetic code—with four musicians first sounding off the letters and then switching to a trio of xylophones and a drummer— Illumina’s CEO Francis deSouza, and a marquee panel moderated by Frances Arnold (Nobel Laureate). This inaugural conference, which runs through Saturday, October 1st, spotlights the potential of genomics and personalized medicine to transform healthcare.
Personally driven by losing his mother to late-stage cancer at a young age and the sight of people having lost their homes because they couldn’t afford healthcare, Obama delved into how to make the health system more efficient, more effective, and produce better outcomes—all of which not only increases people’s wellbeing but also saves a lot of money. In Obama’s view, genomics has a considerable part to play.
“One of the most promising avenues for making the system work better was the amazing breakthroughs that had taken place with the human genome,” Obama said. “The more I learned, in part because of some people in this audience, the more impressed I was with the potential for us to be able to say that what we may lump together as a single cancer may have a whole variety of genetic components to it that is possible for us to target certain medicines for certain people that aren’t going to work as well on other people.”
Obama lamented that he, along with former NIH Director Francis Collins and others, had tried to give a jumpstart to bringing genomics into healthcare. The All of Us Research Program (previously known as the Precision Medicine Initiative Cohort Program) is a research program created in 2015, during Obama’s second term, with $130 million in funding that aims to make advances in tailoring medical care to the individual.
However, the American health system has not advanced as quickly as he would hope to see. That is in contrast to the enormous strides he’s seen the research side make. “The costs for genetic sequencing have continued to go down, which means that offers the potential for more people using it, doctors using it, and insurance companies paying for it.”
But at the end of the day, Obama says he’s frustrated by the state of data collection and sharing. “The data we currently have is still siloed,” he said. “If we can get bigger data sets, then that not only promises to enhance what we’re able to identify in terms of correlations between and connections between particular genomic sequences and particular diseases, but we can also potentially drive down cost because of scale.”
Obama doesn’t think that the rate-limiting factor is progress in precision medicine per se but U.S. healthcare system—or as he put it, the “big creaky system that accounts for a sixth of the US economy.” For various reasons, Obama said the system that evolved is much more of a disease care system than a healthcare system.
“Until we reverse the mindset and the incentive structures inside that system, I suspect we’ll still have some problems, even when we get some amazing breakthroughs that no doubt [will be] discussed during this conference,” said Obama.
As Obama sees it, there is an enormous untapped base of knowledge—a trove of information we’re just starting to unlock. “How do we, while preserving privacy, build up big databases that can empower researchers to move faster, identify drugs more quickly, and tailor treatments to people?” he asked. Obama said he wanted to see changes in the system so that people are screened earlier, moving the needle from a disease-care system to a health-care system.
To do this, Obama believes that teams need to be diverse—not just racially and by gender, but by views, talents, and gifts—and set in a culture where everyone feels they can be heard. True to form, Obama sprinkled some humor into the conversation. “If I have an impossible job, I want the Fantastic Four: the big brick guy, the stretchy guy, invisible girl, and the flame guy! But if it involves water, you don’t want to use the flame guy,” joked the former President.
A student of history, Obama believes the arc of the human journey bends towards justice and that we’ll get a breakthrough every once in a while. He said that everyone should be sustained in their work by the joy and companionship they get from the people they work with—as well as families, faith, and the belief that things unseen are possible. To do so, he said, we have to not just show up but also be scientific about our work.
Obama closed with a message about his hope for progress. “Hope is not based on willful ignorance of all the terrible things happening in the world. It isn’t based on blind optimism. It’s based on knowing that if we keep on working—whether it’s on disease, eliminating child poverty, dealing with climate change, or whatever other problems—then good things will happen. Or, at least things will be better.”