The Government’s Role in Healing Healthcare with Catharine Young

Melanie Marcus: Today's episode is about ambition. But this is not naked ambition. It's not about money or power or fame. It's not that kind of ambition. This is the ambition of setting and pursuing world-changing goals. Of moonshots, in other words. Like the moonshot of winning the war against cancer. On the podcast this season, we've been talking about helping healthcare heal itself, and one of the ways we do that is through moonshots like this.

Our guest today is Catharine Young, a Ph.D. in biomedical sciences and a biomedical engineer by training. She works as the Assistant Director for Cancer Moonshot Policy and International Engagement at the White House under President Biden. Today, as part of looking at the government's role in healing healthcare, we'll hear from Catharine about the goal of the Cancer Moonshot. And it's a really big goal. We'll see. But big goals are intrinsic to healthcare. I’m so pleased to welcome you to the show, Catharine. And I want to thank you in advance for your time and your perspective.

Catharine, I am so happy to have you on the show today.

Catharine Young: Thank you so much for this opportunity. I appreciate it very much. 

Marcus: Alright, today we are talking about moonshots. The very idea of a moonshot conveys the concept of accomplishing the seemingly impossible. When we say moonshot, most of us think about President Kennedy's famous speech at my husband's alma mater, Rice University, when he encouraged us to shoot for the moon back in 1962. Flash forward to 2024. And now our moonshot involves cancer, specifically reducing the death rate from cancer in the United States by half over 25 years. Even just saying those words out loud gives me goosebumps, because there's probably not a single listener out there who hasn't been touched in some way by the devastating impact of cancer. This is where you come in, Catharine, with your work at the White House as Assistant Director of Cancer Moonshot Policy and International Engagement. I am anxious to talk with you about your work here.

But before we do, let's back up and start where you started.

Young: I was actually born and raised in South Africa and lived through a humanitarian crisis known as apartheid. Many of your listeners may be familiar, but if not, it was a brutal system in South Africa where the white minority ruled the Black majority. Growing up in that system I think planted the seeds for me. When I think about my career and what I have been attracted to and focused on is making systems—big systems that people reside in, whether that's a healthcare system or a political system or a research system—making those systems work for everybody. And so that really has been an innate internal driving force in my career since living in South Africa and immigrating to the United States with my parents when I was 18 years old. And from there I went on my educational career journey and became a scientist. I at the time didn't think science was really in my future, but really became attracted to the idea of being able to use science to solve big problems. And that was really the start of this career journey for me.

Marcus: At what point did you decide on neuroscience?

Young: You know, when you think about the body, to me, the brain is the most fascinating thing. Especially when we think about the fact that the brain really is what controls everything about us, from the way that we think and make decisions to the way that we move. And also, the most fascinating thing to me about the brain was the fact that the more that we learn, the less we know, because it is so incredibly complex. So I think that was really something that drew me to the brain.

Marcus: You also spent time working in rare cancers and policy reform and awareness of rare cancers. Can you talk about that?

Young: Absolutely. You know, when we think about systems and how systems have failed many people, I can think of no other community really, that I have been involved in that has been failed the most by our systems than the rare cancer communities. And I think this can be extended to most rare diseases in general. You know, the thing about rare diseases is that even though it affects a very small amount of people, when we think about them together, they actually make up a huge percentage of patients. Rare cancers, while we always talk about them in the minority, actually make up most cancer diagnoses. And when we think about the resources and the tools available, the therapeutics that are being developed and available for patients who get diagnosed with a rare cancer—many times there are none. And so, for me, entering into the space of really advocating for rare cancer patients was critically important to give voice to patients who really needed it, and to really drive policy reform around making sure that patients did have access to the therapeutics that they needed. Everybody should have the same opportunities, the same access to medication, therapies, tools and resources that everybody else has access to, especially when it comes to the common cancers as well. So driving forward solutions for rare cancer patients became a big part of my career.

Marcus: We are going to come back to that and we're going to put all this together for sure. But I want to go on to some other things that you've done, because these all lay the foundation for what you're doing today. And they're fascinating. Your work, leading international engagements on eliminating biological weapons, improving biosafety and biosecurity, and establishing and enhancing biosurveillance capacity. Tell us about that.

Young: Those all sound like big words. You know, I had a really fascinating opportunity as a scientist to enter into the government through a fellowship called the American Association for the Advancement of Science, or AAAS, which provides scientists who have a Ph.D., or medical doctors who have MDs, the opportunity to immerse themselves in a government agency and learn the policy process, and at the same time, the agency in return gets a scientist to work for them. And so it's a really amazing win-win opportunity for me as a neuroscientist. I was placed at the Department of Defense. Now, you know, a typical career path for a neuroscientist does not normally end up in the Department of Defense.

Marcus: I would imagine not.

Young: And so it created this incredible learning opportunity to understand not only how a huge government agency like the Department of Defense operates, but also how it works together with other agencies and other countries to this point of solving really big problems. And during this time, while I was there, we had another outbreak of a pandemic, which was the Ebola outbreak many years ago, which was terrifying at the moment. I had this incredible opportunity to have an inside seat at the Department of Defense, who played a really major role in tackling the outbreak of Ebola in Western Africa. I got to travel to Liberia, see the response of the country and the allied countries helping them at that time to really try and mitigate Ebola in the best way possible and to serve the people in Western Africa as effectively and quickly as possible.

One might think, how does Ebola relate to biosurveillance or bioweapons? Well, there was a concern that nefarious actors could get access to blood samples that were Ebola positive and use that as a bioweapon. It is something that causes great havoc and chaos. And we saw that unfold in Western Africa. So, our job was to ensure that the countries not only have the tools and resources to be able to test for Ebola and treat for Ebola, but also to truly secure, a lot of the blood samples that were in hospitals themselves to make sure that they were safe and secure as well.

Marcus: We think about collaboration here at Surescripts all the time. The only way you can run a network is to be collaborative with all of the different market segments participating. And that's how we've scaled our work. So, can you talk a little bit about the collaboration that you've brought back to the United States and how that is playing in the work you're doing today?

Young: There's a couple of really great collaborations happening right now. We are actually about to host a number of African countries at the White House this month where we're going to be talking about exactly this—collaboration between the United States and African nations, and how collectively we can work together to solve these problems. And it's not just about the United States going and saying, “This is what you need to do.” It is a bidirectional learning process. We learn just as much working with countries around the world that they do from us, and it is critical for us in the United States to understand that the issues that many countries are facing—especially low- and middle-income countries—are often issues that we are facing in our own backyard, too. Many rural areas, many underserved areas are facing the exact same challenges that many low- and middle-income countries are facing as well. So it is really a critical thing for us to be very open and have these very bidirectional relationships with these countries, because we learn just as much from them as they do from us.

Marcus: I'm going to turn topics just a little bit back to your work in neurology. In a TED Talk that you gave in 2020, you said that Americans took in five times more information in 2011 than they did in 1986. Can you explain to our listeners what you mean by information overload, and what impact does that have?

Young: I mean, just think about our day-to-day activity of scrolling on our phone and the amount of information that we're just constantly consuming. You know, before social media and the advent of your phone that you can hold in your hand and just have instant access to the world. Information, you had to go and seek it, right? It wasn't blasting in your face 24 hours. You can wake up at 3 a.m. in the morning, grab your phone and scroll and scroll and scroll and be bombarded by information. And so we really are living in this time of information overload, where regardless of where you're turning, somebody is trying to tell you something, somebody is trying to sell you something, somebody is trying to convince you of something. And so it becomes really imperative that we learn—and it's very difficult—skills to be able to start to navigate this bombardment of information. To really be able to separate the good from the bad. And I think this is a challenge that we're all facing.

Marcus: Oh, sure. So what role do you see technology playing and helping with some of that?

Young: The White House Office of Science and Technology Policy—which is where the Biden Cancer Moonshot sits at the White House—we certainly think about artificial intelligence and technology a lot. It is the way of the future. It is here now. And so, what do we do to make sure that we put guardrails in place in order for [there to be] safe usage of this technology and artificial intelligence, and convert it to [be for] the good of mankind instead of the nefarious side of things? This is a really big challenge that I think that not only the government will be facing and is facing, but also companies that are looking to incorporate technology and artificial intelligence into their workflows and into their day-to-day lives.

I think it is imperative to know that there are good things to come from this, right? If we can unburden physicians from a lot of the administrative tasks or having assistance in clinical decision making, this can be a really, really amazing path forward for us in the healthcare field. But we also have to think about the other side, which is, how safe are these systems? How is the data used? And what are the privacy guardrails put into that? What is the bias that has been encoded into these systems that will perhaps just continue the issues? Certainly, the Biden-Harris administration has a huge focus on this right now.

Marcus: Let's talk about your TED Talk a little more. Because you talk about not only the information overload, but then you have this discussion about how the brain takes shortcuts. And it creates blind spots that can make us more prone to bias. Can you explain what that means?

Young: Absolutely. You know, I use the term “lazy.” Our brain is not necessarily lazy, but it is encoded to take these shortcuts, right? It is, from way back when we were faced with many split-second, decision-making circumstances where the brain will take in information very superficially and then make snap judgments. And this can lead to a number of issues down the road, especially when it comes to biases. Because we are not necessarily taking the time to really think critically through the information that we're receiving or the environment that we're in and the pieces that are coming towards us. So, it is a really fascinating thing about the brain that I don't think a lot of us think about enough on a day-to-day basis where making these decisions that we think about. So, for example, if you meet somebody and you have already formed an opinion about them in the first few seconds of meeting with them, is that correct? Do we often take the time to really ask ourselves whether or not that the opinions that we're forming or the decisions that we're making are the correct ones based on information that we've taken in and potentially made very, snap judgments about that?

Marcus: Sure, sure. And the reason we're talking about all this is when we're talking about healthcare, it's all about information. We get information. Our doctors get information, right? And so being able to sift through it quickly, being able to do it without bias, to the extent possible. And then you talk about the cultural challenges. You talked about the experience of fighting Ebola in Liberia with the U.S. Department of Defense. I'd love for you to share that.

Young: Yeah, absolutely. You know, one of the reasons why Ebola spreads so quickly in Africa and around the world was, because of cultural traditions in certain places in Africa, people would lay with their deceased family members in very close contact because that is the tradition. And not having the information in terms of how Ebola spread, you know, those kinds of traditional behaviors really accelerated, in some instances, the spread of Ebola. And so it is a really fascinating thing when we think about these complex global challenges, to take the cultural and traditional aspects into consideration. It is why it is so important when we work with other countries, that we don't just come in with our own viewpoints of having lived here in the United States, a first world country with our own traditions and cultures and assume that everybody else is going to be in the same operating system. And so taking the time to understand what other things and other components really build upon certain aspects, particularly as it relates to culture, is a very critical component when you're working with international partners as well. And of course, with the spread of Ebola, that played a really critical piece to that as well.

Marcus: Let's shift to your focus on cancer. You've talked about that you are fascinated with and focused on solving really big problems. And it just makes me think, wow, cancer is one big, complicated area to put that passion to work. That's my view of why you might have picked cancer. But talk about how cancer became so much of your focus.

Young: Yeah, absolutely. Well, you know, we have one word to describe cancer and that is “cancer.” But cancer actually comprises hundreds of different and discrete diseases. And so when we think about tackling cancer, and I think this is why when people think about, “Why have we not made enough progress against cancer?” Which we have, but not enough, right? And that is part of the reason is because it is so complicated. The body can react in so many different ways. Cancer can be in any different type of body part, and it is always and could be different so that the treatments and the therapeutics that need to be developed have to be very targeted. And that can take a lot of time, effort and money. And so, yes, when I think about cancer and how I eventually ended up here, I think that is part of it, right? It is a disease that touches all of us. I don't think there is a single person listening to your podcast that hasn't been touched by cancer in some capacity. Whether that is personally, whether that is your own family member, a loved one, a friend, a neighbor. We all are touched by cancer in some capacity. And I think that is another thing that really has drawn me to this work is that when we think about mission-driven work, this to me really fulfills that. Because I know that the work that we do every day at the Biden Cancer Moonshot will have impact around the world in some capacity.

Marcus: Listen to these numbers. I mean, the Biden Cancer Moonshot, we said earlier has set the goal of slashing the death rate from cancer in the U.S. by half. Over 50% over 25 years. That could save 4 million lives. And as you say, the numbers represent real people: Parents, loved ones, children all looking for more time together. You know, that resonates with me. I've shared on this program before that I had my own bout. Where I went in for a mammogram with no real risk factors and came out with a diagnosis of early stage breast cancer. I'm very lucky. You know, we cut it early. I do volunteer work now with the Brem Foundation to promote early detection of breast cancer to help save lives. I would imagine the early detection of any cancer is high on the list for the Cancer Moonshot, right?

Young: Absolutely. I think when we think about some of the top priorities for the Cancer Moonshot, you just hit on two of them. First of all, screening. During the COVID pandemic, Americans lost 10 million screens for cancer during that time period. We are very urgently trying not only to close that screening gap, but also exceed those levels from prior to the COVID pandemic as well. So, it is critical, that screening component. As you said, we know when we catch cancer early, that's when health outcomes are the best. In your case specifically, I think that is just a great example of that.

The other part of that is preventing cancers before they even start. And this is a really important thing because there are so many tools already at our disposal to be able to do just that. And the one thing that springs to mind, and something that is of great importance to us at the Cancer Moonshot, is the HPV vaccine. This really targets the HPV virus, which can lead to several different types of cancer, including cervical cancer, which is one of the biggest impact cancers when we think about female cancers in general. Breast cancer, of course, being one of them as well. But here we have a vaccine that actually prevents it. We can prevent a certain cancer or several certain cancers as well. And yet, not everyone has received this vaccine for a number of reasons. And it's complex. And humans are complex beings. And, you know, we again bring our own biases and different thoughts and perspectives. To your point earlier about the conversation around information overload. I mean, talk about vaccines and that being a really tricky subject, right? I mean, especially coming out of the COVID pandemic where there was just such a huge, huge division. Not only in this country, but around the world, around whether vaccines are the right thing to take or not. It is a very complicated topic. But again, we have something that prevents certain types of cancers, and it is imperative that we are not only ourselves making sure that we have given ourselves the opportunity to take these precautions. But also ensuring access to everyone in the United States and around the world who do want to, for example, have the HPV vaccine. It is really one of our jobs at the Cancer Moonshot to try to think about that access piece. How do we get these tools and resources that already exist out to everybody, in the United States and across the world?

Marcus: So prevention and early detection are great ways to do this. Then you find cancer. And what is driving the innovation around treating and supporting patients and caregivers?

Young: Yeah, absolutely. Again, you touched on two things that are really driving forces for the Cancer Moonshot. One is not only developing and driving new innovation around cancer treatments and therapeutics, but also to my point earlier, making sure that that innovation reaches people across America as well. So, innovation is only as good as it is to get to the people that it needs to get to. And if we are only hoarding innovation for certain groups in the United States and across the world, are we really doing our job? And I think the answer to that is no. So that access piece plays in that innovation piece. And we think about this long and a lot in terms of the arc from the innovation piece. So, from early basic research through translational research to clinical trials to then therapeutic development, to then getting it to the people that that need it. There's a lot of pieces involved in that.

But then also to the other point that you brought up, which is another critical piece of the Cancer Moonshot, is patient support. How do we ensure that patients are able to not only navigate this incredibly complex disease, but how do we unburden them from all the other pieces that so often are left to the burden of the patient as well? One of them being, understanding the information that's coming to them, which is a lot. One of the best descriptions I've heard of a cancer patient describe receiving a cancer diagnosis news from their physician was that all of a sudden, they felt like they were walking through molasses where the words were coming to them, but it was just so slow and they just couldn't quite understand and make out what was happening. And I think many people might be able to relate to that. So how do we make it? How do we support patients during that process, during a very critical time, and also throughout their entire journey, so that they understand what is available to them and the path that is best suited for them? And I think one of the best things to come out of the Biden Cancer Moonshot recently is patient navigation. The idea that you can actually have somebody who helps you navigate your entire cancer diagnosis from the time you receive the diagnosis through your journey through survivorship. And we have now been able to cover at least half a half of all Americans in terms of insurance coverage for this amazing service of having somebody be able to really walk by your side with a cancer diagnosis to really help you navigate that process.

Marcus: So can you talk about how technology or clinical information exchange might help play a role in the work that's happening here?

Young: Absolutely. One of the things that we're driving forward really is data sharing, data standardization and empowering patients when it comes to their data. Well, depends who you talk to. But it really is at the core of everything that we need in order to really drive solutions forward. And so the way that we think about it, not only at the Cancer Moonshot, but with this administration in general, is how do we get the plumbing right? How do we make sure that the information that is exchanged—maybe between a cancer center and a research center—how do we make sure that the language is the same? So that we can capture the things consistently that we need in order to be able to identify new solutions or identify trends. So that language needs to be the same as well. And then how do we empower patients? How do we make sure that the patients are really in the driving seat of their treatments, making sure that they are the ones understanding the data at their fingertips. But also having control of their own data, whether they want their medical records sent somewhere else, or whether they want to be able to provide their own medical records and data for research purposes, which can sometimes be a very challenging pathway as well. So really trying to remove all those obstacles to ensure a very expedient and obstacle free pathway for data to travel easily, but also be protected in the ways that it needs to be to protect the patient is a very critical component when we think about new and novel solutions for patients. Whether that's the therapies coming out or whether that's through the clinical trial data that's coming out. All those pieces are really critical. And they all require their own set of focus and teams working on that as well.

Marcus: That's great. That's great to hear and exciting for everyone. This is one of my favorite parts of the conversation, where we kind of wrap it up with how healthcare might help, you know, heal itself. But my question is, really, healthcare is hurting. What's your diagnosis for what's wrong with it?

Young: It's a tough question. You left the tough one for the end. You know, when I think about healthcare and how far we’ve come—because I do feel that we have made great progress. I think the reason why we are starting to turn the corner in many places is because we are including the patient as a partner in this work. And I think for many years, for many decades, for many centuries, the patient has been just that: a patient. You know, they're over here and we're over here. And there has been a very discreet disconnect between the two. What I've seen, and it brings me actually so much hope. And it's not just through the Biden Cancer Moonshot, but also through many organizations. And even the private sector and industry have recognized how important it is to have the patient voice be a driver of the work going forward, being a critical architect of the solutions that are being proposed. Because there is no greater person that understands this disease than the patient themselves. And so it is absolutely imperative that we include them not only in conversations, but in actual solution and policymaking as well. And I think we're starting to see that happen more and more. And that is, I think, a huge credit to a lot of the progress we're starting to see.

Marcus: Oh, I love that. Put the patient in the center and listen, listen, listen. So is that how you would help healthcare heal itself?

Young: I absolutely would. I think we need to empower patients more. We need to give them all the credit too. And we need to make them an equal partner in this process. It's not just about the policymakers and the clinicians and the researchers doing their job. It is about bringing us all together. And that has to include the patient voice as well.

Marcus: Right. And then on the government side, what's the ideal role for government in helping healthcare heal itself?

Young: What I have learned in this process through the Biden Cancer Moonshot is that leadership matters. And when you have somebody in a leadership position like the President driving progress forward and being able to create this intense focus on something, it allows alignment for all the agencies to come together and start to work together to see solutions happen. One of the things that the President did is create, for the first time, a Cancer Cabinet, which brings together over 25 different departments and agencies. And we bring them together and ask the question, “What could we and what should we be doing more for cancer patients?” And now all of a sudden, we have a very cohesive mechanism to execute work with. And so I think the government plays a huge role, of course, but we are not the only player. And again, going all the way back to the beginning of our conversation, this idea of collaboration and partnership with all the players in this ecosystem is so incredibly important, and I am just thrilled that we see that on this side, the incredible enthusiasm to be able to work with people not just in the government but outside as well, I think is a huge driving force that we're seeing move solutions forward.

Marcus: Fantastic. I think I'm getting a sense, but I'm going to ask anyway, what prescription would you write for healthcare?

Young: I think you're right. I think it is collaboration. It is making sure that we are bringing the right people at the table and really designing a system that works for patients with patients as well.

Marcus: Fantastic. Well, Catharine, it's been amazing talking with you. Thank you for all the work that you're doing. I just can't imagine a better place for you to be. And I'm really excited about the impact that the work you're doing is going to have on all of us. 

Young: Well, thank you so much. And I so appreciate the opportunity to talk with you today. It's been great. Thank you.