reg Simon has worn many hats: in industry, at think tanks, and in and around the White House. Though he once worked under Al Gore as a domestic policy adviser, among other posts, in recent years his focus has narrowed to cancer — largely because he is a survivor himself.
Simon has spent the past 15 years looking for ways to help cancer patients get the treatments they need, advocating for more streamlined clinical trials, and finding ways to hasten the bench-to-bedside process of basic science research. He joined the Milken Institute’s health care think tank FasterCures in 2003, intrigued by the idea of making the medical research engine more efficient. But in 2014, Simon received a cancer diagnosis of his own — and is now in remission from chronic lymphocytic leukemia.
These days, Simon is heading up the Biden Cancer Initiative — tapped by former Vice President Joe Biden to find ways to improve the broader system of cancer care.
STAT caught up with Simon at the recent Milken Institute Global Conference to talk about cancer and moonshots. His comments have been edited for length and clarity.
Tell me about the Biden Cancer Initiative.
We’re trying to create the cancer research and care system that people think we already have. People think they can share medical records between hospitals. They assume the cancer medical research community has a standard lexicon to describe pathology and tumors. They do not. We have a very customized, individual, historic system that has not changed much from the late 1950s. So we want to focus on how to take the brakes off — and improve data sharing, data standards, and make clinical trials easier to recruit.
You headed up the cancer moonshot at the White House under President Obama. Does that still exist in some form?
There isn’t work being done at the White House anymore on the moonshot, but there’s work being done at all the agencies that were part of the moonshot. As the executive director of the task force, our job was to provoke, cajole, convince, and inspire the agencies to take this on and do something wonderful. And they all did. All of which is still going on.
It may not be going as fast as we’d have liked if we stayed in office. It may not be the same way we’d have done it. But it’s still the moonshot program, and it’s still over and above the basic portfolio. Other agencies: NASA, DOE, VA, NEA, Commerce, Patent Office, NEA, EPA, USDA — whatever they’ve promised to do, they’re still doing. It’s just uncoordinated.
Is there any specific effort from the Trump administration to support cancer research?
To the White House, medicine is a question of insurance and Obamacare. To the rest of us, medicine is about health. The insurance is critical, but we tried to interest the White House in the cancer moonshot, and they weren’t interested.
The NIH, over the past year and a half, has been rolling out more programs that partner with industry, outsourcing some of the work. Do you think that’s happening because of an administration change, or because it’s just a good idea?
That started a long time ago. That belonged to the Obama administration. NIH is working with industry to streamline access to approved drugs for combination trials, and a collaboration with industry in pre-competitive research, called PACT — allowing the NIH and industry to work together to save a lot of time and money. These things went on long before the Trump administration.
What do you think NIH could be doing better?
I’ve written entire reports on this.
It’s great they’re getting the money from Congress. That’s awesome. Their budget’s gone from $30 billion to $37 billion in the past few years.
NIH needs to … I’ll just go through the list: Fund younger people. Fund riskier research. Fund more diverse research. Create an intramural program on campus that’s truly using crown-jewel, rare technologies that are hard for universities to replicate. Do one-of-a-kind things that can’t be done anywhere else. NIH needs to stop funding just intramural researchers who live in a university environment on the NIH campus. I’d say it’s a Division 2 or Division 3 university. But we don’t need another university — we have thousands of universities that get NIH funding.
You propose, then, that the NIH look a bit more like the Defense Advanced Research Projects Agency, taking on only ultra-high-tech projects. Why?
So what I think: We need an intramural program to focus on really difficult questions, and make it a DARPA-like environment. People come in for three to five years to work on something that will change the field, and then go back to their jobs. As it is, you have a lot of tenured people who are doing good work, but they don’t have the mindset you have at DARPA where the project is to do that, and you’ve got two years to do it. As opposed to, you’ll be here for 30 years, what do you want to do?
You’ve hopped around in the past 30 years. Worn many hats. What do you think you’ll be able to accomplish at the Biden Initiative that you haven’t at previous posts, for instance at FasterCures, a nonprofit that aims to speed up the medical research system?
FasterCures is about all diseases. Cancer is an important part of that, but so are rare diseases and Alzheimer’s, etc. So it had a broad focus. The Biden initiative combines the focus of FasterCures to create a more efficient system with the need for the country as a whole to take on this challenge.
What started as the moonshot program has certainly become a movement. The extent of public support and interest and involvement is far more than I ever got with FasterCures, even though we have similar goals. And I attribute a lot of that to Vice President Biden and the story of his son — it captured the imaginations of the world. And with FasterCures, we had to build our stage — cancer moonshot started with the White House State of the Union.