Episode 103: Medical Research in the Time of Trump with Stephen Spielberg, MD

Disclaimer: Unedited AI Transcript

Announcer (00:00:00):

Today's episode of specifically for Seniors is brought to you by Memory Lane tv. A streaming service made just for people living with dementia. It's full of calming sensory friendly videos that help reduce stress and lift mood and science backs it up. Memory Lane TV is available for both home use and in professional care facilities. More information and links to Memory Lane TV are in the show notes. Below

Larry (00:00:30):

You are listening to specifically for Seniors, a podcast designed for a vibrant and diverse senior community. I'm your host, Dr. Larry Barsh. Join me in a lineup of experts as we discuss a wide variety of topics that will empower, inform, entertain, and inspire as we celebrate the richness and wisdom of this incredible stage of life.

Larry (00:01:03):

With the appointment of Robert F. Kennedy Jr. As Secretary of Health and Human Services, the Trump administration has systematically targeted the next generation of scientists and public health leaders. He has cut science funding to the lowest level. In decades, more than 20,000 jobs were eliminated. Billions of dollars in scientific research has been threatened or paused, and a budget draft proposes a major restructuring of health and human services. The Trump administration has asked federal agencies to cancel contracts with Harvard University worth an additional $450 million after canceling more than 2.2 billion in federal research grants. Among these grants and contracts were medical research projects. The proposed budget for the NIH includes a 40% cut. The CDC faces a budget cut of about half its spending, and the National Science Foundation 2026 budget would be cut in half. These budget cuts could drastically affect the health of Americans for generations to come. RFK Junior fired 17 expert members of a committee that advises the CDC on what vaccines people in the United States should take and when making families less safe. And he aims to prohibit government scientists from publishing in top journals, citing pharmaceutical influence and corruption concerns. He proposes new in-house journals for NIH funded research, questioning the peer review process of established journals. To help us understand the ramifications of all of this, we invited Steven Spielberg, MD to help us through the complexities of this strange time in medicine and science.

Larry (00:03:37):

I asked Stevefor some background information so I could introduce him properly on this podcast. He replied, quote, if you wake me in the middle of the night and ask what I do, I would say I'm a doctor, a pediatrician, and all I have done as a basic and clinical scientist, as a medical school dean, as a deputy commissioner of the FDA, all that comes back to a focus on the care of sick kids and the prevention of disease, optimization of health. And remembering humbly that we are all human, all on a vast journey of learning and striving for a better world. I urge you all to read Steve's full biography at our website, specifically for seniors. Welcome to specifically for seniors, Steve.

Stephen Spielberg (00:04:41):

Larry, thanks so much for the invitation. We are indeed at a pivotal and difficult time in the history of science and of medicine, healthcare in our country. And I think it's very appropriate that we have a chance to to talk about these things in an open way. And my goal in the next little bit is to review some aspects of science, how science works, how biomedical science works but as you said in the introduction, really all focused on the needs of our patients, all those in need of healthcare and improvement in their lives. So a a a few preliminary thoughts about medical science. One of my most cherished possessions is a pharmacopeia from London that was printed in 1739. It lists all the drugs, mostly herbals at that time, used in the hospitals in London. Remarkably, that same volume was used 130 years later in 1869 based on the far the notes and the margin of the book, nothing had changed in terms of medicine in 130 years. And I wanna compare that view of timeframe with a study done recently by NIH reviewing the doubling time of medical knowledge, how long it takes to have twice as much knowledge as we had before. And they had very specific criteria for what they meant by medical knowledge. But the bottom line is they estimated in 1950, certainly my lifetime that it took 50 years to double medical knowledge. And today it's estimated to be 73 days.

Stephen Spielberg (00:06:53):

I'm blessed, as are my patients by this explosion and new knowledge, but I'm also terrified by the current assault on science, the lack of understanding and support of what science is, which is a method for understanding nature in a systematic way, not just a collection of facts. Every evolving and changing challenges us to learn more and to give up old ideas that are incorrect and adopt new ones. Coming back though to where we started using that knowledge to benefit our fellow human beings an evermore incredible task right now, given our expanding understanding of human biology but also how horrifying it is to think that thousands of years of human progress can be at risk in a very short period of time. The process of science is to ascertain the validity effects, not just facts themselves, but the validity effects. And a few points that will keep coming back to as we discuss various different things.

Stephen Spielberg (00:08:13):

The complexity of biomedical science these days requires working as groups. Very few people work in isolation whether it's in a laboratory doing clinical trials, the assessment of grant applications to the NIH to publishing in journals. And we've developed and worked very hard to develop rigorous methods in all these fears, to minimize bias and to get validated interpretation of facts, whether it's in clinical trials using randomized controlled trials, statistical approaches to study design, replication of findings. And that's really critical, particularly across different investigators and study sites. When I was running a laboratory, anytime I saw a paper coming out that had replicated some of the work I did, I felt pretty good about it, but I also felt good if they expanded it and found errors just because we didn't have enough knowledge at that time that expanded because we always build on the shoulders of others. And that's the way science works

Larry (00:09:29):

Then. So that's, that's, excuse me. Yeah. But that's the process known as peer review.

Stephen Spielberg (00:09:35):

Well, it, it, it, it's part of it. And we'll get into that in a moment, Larry. And it's really critical. Let me just say a couple more general things and then we'll get specifically in, into those issues. Transparency, and that means transparency in publishing, transparency in doing grant reviews and in the training of our students. And one key point, and I think it's important, when the public looks and hears information coming out from various sources, anything that sounds very simple, it's probably not valid. Life's too complex and science is too complex, and we have to appreciate that complexity and figure out ways of working with it. And that includes such things as, as, as peer review which we'll, which we'll get into in some detail. And the bottom line is all of us have a stake in having the best science done by the best scientists, implemented by the best physicians, as well as having regulatory agencies such as the FDA, having people who have in-depth knowledge of science so that they can in fact properly approve medicines, devices, and other treatments.

Stephen Spielberg (00:11:10):

Just one quick issue about, you know, who, who should be running departments these days? Because you, you you brought that up. Typically, secretaries are, don't have scientific or in-depth knowledge, but the criteria we should be looking for, for people running large organizations, including in government, is some knowledge unbiased and exposure to the field and intrinsic sense of curiosity and appreciation that science requires, having the very best people surrounding you. Those with in-depth knowledge, creativity, flexibility to new ideas and critical thinking to be able to sort between scientifically derived knowledge and ideology or political philosophy. And for years, we've really worked very hard to try to a, minimize the science the political influence on science, but also the biases that people have. And we all have biases.

Stephen Spielberg (00:12:25):

And I will, you know, the, the, the, the whole notion of having a peer review panel of which I've sat on a lot of times for NIH and for other organizations, is that we all share our biases openly. So we know where we are coming from. And you have panels designed to balance those biases to have honest, transparent discussions, including in public. So the public understands where decisions are coming from. Now, the, you you mentioned the termination of of, of the CDC vaccine panel as, as a pediatrician, this goes straight to my heart and worries me greatly. Bringing in a smaller number of people who have different approaches to things, and we don't know their biases because they haven't been fully vetted in the way that the larger panels had been vetted can lead to some pretty ill-informed discussions about vaccines. And I, I just wanna lay out right from the beginning, I mean, in, in my fifth grade class, I had two kids with polio.

Stephen Spielberg (00:13:46):

They suddenly disappeared from class. And back then parents didn't talk to their kids about what was going on. All we knew is that the parents were terrified and the teachers were terrified. We had no way of preventing the disease, and we had no real cures. And think about societal investment, all investment was going into making better iron lungs and children's hospitals were designed to accommodate iron lungs. We had these huge rooms built that where the iron lungs would fit totally wrong for what taking care of children in hospital is now all about. And then a man named John Enders and others began growing viruses in eggs. And from that came vaccines. And those vaccines ended up saving myriad lives and preventing paralysis from, from polio, from the Slk vaccine. But in my career, I've seen childhood vaccines literally eliminating diseases that I spent most of my career treating everything from meningitis to tetanus and on up and down the line. So the cuts that have been made in, in, in, in the grad panels are exceedingly worried, and they're also potentially unethical, unethical. You miss, you mentioned stopping clinical trials in the middle. We have an ethical contract with every subject entered into a clinical trial that their data will be properly used, and all the data in that trial will analyzed to get an answer whether treatment A or treatment B is better or what to do. But the bottom line is those ethics are now also being stressed by the funding cuts that we've seen.

Larry (00:16:01):

So it's, it's not just the elimination of research, it's, it's the arbitrary cuts in funding are affecting our morality, basically.

Stephen Spielberg (00:16:16):

Absolutely. Absolutely.

Larry (00:16:17):

And, and our obligation to patients.

Stephen Spielberg (00:16:20):

Absolutely. I mean, we've worked for many, many years to establish guidelines and we've updated those guidelines. I've sat on several ethics panels through what was then the Institute of Medicine reviewing how we do informed consent, how we analyze data, how those data are presented in a transparent way to the scientific community and to the public. That's all at risk when you begin arbitrarily cutting grants. And the grants have been cut, not for reasons of science. In fact, if you look back, very, very few grants have been discontinued in history for other than an occasional malfeasance or inappropriate use of funds. Look, we're human. These things happen. Those grants were cut. But the bottom line is the cuts now have nothing to do with the science. And a great deal to do with, with with, with politics and the development of new knowledge, which is ni h's domain. Okay. Primarily disease epidemiology and surveillance, which is primarily CDC, and the regulation of products, which is primarily FDA's role depends on expertise and experience of all those involved. And we are at risk of losing that. There are huge research projects that have been going on literally for years now, that the participants, as well as the investigators, have committed their lives to collecting biological samples over time and collecting health information over time. If we lose those, we have lost the opportunity to understand many, many critical diseases.

Larry (00:18:28):

And, and it's a shame. I, I'm, I'm sorry. No, no, no, please. But I, I was gonna say, but, and it's a shame that all of this scientific endeavor, according to principles that are developed over the years mm-hmm <affirmative>. Are being replaced by opinion that like the, the autism Yeah. Problem or suspected or projected or whatever <laugh> that vaccines are the cause of autism. Yeah.

Stephen Spielberg (00:19:06):

Well, you know, it's, we've, we've really worked, as I said, very hard on the issue of establishing valid peer review. Could review processes be better. We've always recognized they need to be better, which is why we review what we do. We review the results of grant panels, we review the results of FDA, decisions about medications or vaccines or whatever. And we've, the, I've sat on review panels for many, many years of different issues. We now have inclusion of patient advocates so that we have the public involved in the panels. If you look at the design of the buildings at FDA, the largest room in the FDA in, in, in the new construction out in, in Silver Spring, is a room designed to bring people in to have open hearings about a variety of issues. And the peer review process. We are very careful in having, as we said, everybody lists all of their financial involvements.

Stephen Spielberg (00:20:23):

And sometimes that will be disqualifying, and that person may not be able to sit on a panel or sit on a specific discussion that might somehow relate to something financial. But beyond, beyond that, we have to be very careful about biases built on politics, on ideology, and absent the, the, the, the, the real issues of science. The autism question, I mean, this, this has been front and center for a lot of people. Patients with autism have been studied extensively. And one bottom line right up front is that multiple studies, and remember I said replication is the key to validity done on thousands of patients and children in different settings in different countries with different diseases have shown no association between vaccines and autism. And frankly, to do additional studies is not only wasteful, but it leads to lost opportunity costs to invest in other studies of autism, which will help us to understand autism better and confusion for patients and families.

Stephen Spielberg (00:21:58):

Now, the, the changing diagnostic criteria, DSM five, which is, is sort of the diagnostic volume for psychiatric conditions changed its criteria for what autism is. Asperger's disease, which was a milder form, quote unquote was, was decreased. And we began talking more and more about autism spectrum. And all of a sudden, a huge number of patients who weren't caused called autistic before now were included under that diagnostic category. I should say that some of that's helpful to patients and children because it may get them better educational services. It better, it may get them better access through their insurance to a variety of medical interventions. But autism, even when you say spectrum, is not a single disease or condition, it has a variety of different ingredients is, if you will, in making that diagnosis. And many things that we called autism in the past are now understood as inherited conditions as genetic diseases such as fragile acts.

Stephen Spielberg (00:23:28):

And indeed, very specific conditions in utero before the babe's born have been implicated in autism. Other risk factors include extreme prematurity, some data suggesting increased mat paternal age may be a risk risk factor. We don't understand those things, but we have the opportunity to explore why those things may be the case. And ongoing research into risk factors using molecular approaches and clinical approaches have really helped expand our understanding. And those studies are at risk if we go and tell stories that are not true about vaccine involvement or other issues. And as our genomic expertise and sophistication has expanded in the last year, we have seen all sorts of new insights. And our hope is that those new insights can lead to improvement in the lives of the patients who have one aspect or another of of autism. And the bottom line is that Ill-informed discussions of autism and ill-informed descriptions of patients with autism, which we've been hearing about coming out, particularly at a time that we are making these major advances, we'll only hurt those in need.

Larry (00:25:10):

And that is, it's one thing when this discussion about it, it's another thing when RFK Junior aims to prohibit government researchers from publishing in peer adjudicated journals and decides to just make up some journals with made up panels of experts in which to publish them. Yeah,

Stephen Spielberg (00:25:42):

This is very dangerous. I mean, it, it sounds like Russian medicine in the 1920s <laugh>. And because that much of that was done, you know, everything had to be according to some predetermined political philosophy. The peer review process, as we said, is not perfect. And it's always evolving for journals journal editors and publishers and people who do peer review. You know, it, it, the typical setup is of a journal is you have an editor in chief, a series of associate editors with expertise in specific areas that the journal covers and then panels of reviewers out there. And again, we have been working for years to improve the quality and the lack of bias in the peer review process. Now if you pick up a journal, you'll see that the authors list all of their sources of support for, for their research, for their departments.

Stephen Spielberg (00:26:55):

It's all rather transparent and increasing. And when it doesn't work, we've improved it. The publishers and journal editors get together at least yearly with a peer review con conference to improve the quality of the peer review, which increases our confidence in the nature of science. We also recognize, and I mentioned this before, what, what we know today, much of it will be proven to be not perfectly correct down the line. That's why we do new science. We reevaluate, we look at new causes, we look at what's going on within a field, and from all of that, we come up with a better way of doing science. The risk of having centralized journal that only that approves publication, again, based on some sort of political philosophy is going to set us back hundreds of years.

Larry (00:28:10):

And that's gonna change America's standing in the global scientific community as well.

Stephen Spielberg (00:28:18):

Oh, absolutely. You know, we live on a very small planet. I did some work in Tanzania in pediatrics which markedly changed my understanding of the lives of children globally. We've seen an attack now on U-S-A-I-D. We're living at a time where we can indeed lose leadership. There was a call to decrease funding of gavi, which is the international organization that does vaccines globally. No question. But that the management of existence disease and the recognition of emerging disease is going to be put at risk. Think of HIV and what we've been through from an inexplicable disease to the basic science to know that it was a retrovirus to medicines. Now that giving a shot two times a year can prevent the disease. This is remarkable. This is all in my lifetime as a physician. And I remember seeing kids with paternity acquired HIV from from their moms and in Africa realizing that HIV was primarily a heterosexual disease.

Stephen Spielberg (00:29:55):

And at the time, I was working in Tanzania and Ria, third of moms were HIV positive. And children who fortunately had received medicine in utero to prevent transmission were growing up, but their parents were dying from HIV. And it was the grandmothers who were caring for the kids. We were in a leadership position, the heroes in, in, in, in Tanzania. People used to ride around on little mini buses, and they all had heroes names on them. Some were soccer stars. You know what most of the buses had on the side gates for Bill Gates's investment in public health. There's another aspect of public health, and and I, because this has been brought up again, and it it goes to universities. We had, we have great universities in the United States. We have some of the most fabulous science and education in the United States, but all of medicine is collaborative.

Stephen Spielberg (00:31:10):

Let me just give you one example to say how important international collaboration is. The Nobel Prize was given a number of years ago for something called crispr. And CRISPR is a mechanism for gene editing. Okay? It's pretty complex science. It was begun as curiosity research of how bacteria protect themselves from viruses because they cut the virus's gene so the bacteria can survive. And the, and the, the Nobel Prize was given to Jennifer Goodna, who's at uc, Berkeley, and funded for through NIH for many, many years. And Emmanuel Pontier, who is French, who is now at the Max Plunk Institute in Berlin, the two of them worked together across continents, across countries, sharing their insights, sharing their knowledge.

Stephen Spielberg (00:32:16):

This approach now is at the cutting edge of the future of biomedical science. And it's already being used in studies to cure sickle cell anemia, to cure thalassemia, and a number of other rare genetic diseases. And it'll form the basis of how we approach treatment of many cancers as well. Remember, coming from curiosity, research from the lives of bacteria to how to save the lives of people. And it was global. And that's a message that we can't forget. If we lose the ability of American scientists to work effectively with our colleagues all around the world, not only will America suffer the whole global suffer and given again, the smallness of the world, and the fact that anybody can hop on a plane with any disease and travel to another country and lead to an outbreak. This attitude is very, very dangerous. And one of the things that I've loved being in medicine and science is I've got trainees and colleagues all over the world who I still collaborate with, and they, and we have taught each other in the process. That's the nature of science. So I, I think we're, we're at a very delicate point internationally. We cannot afford both to lose the American dominance in science, which is wonderful and true. And we should, and we should absolutely applaud it and welcome it, but at the same time, recognize that we've got to work globally with our colleagues globally with public health experts. We have no idea when the next aids or the next who knows what will be coming down the pike.

Larry (00:34:46):

We'll be back right after this message. When you get to my age, forgetting names and trying to remember why you went into a room are pretty common occurrences. Unfortunately. You also realize, like I did, that a family member can develop a more serious cognitive problem. That's why I am really happy to introduce you to Memory Lane tv. A streaming service made just for people living with dementia. It's full of calming sensory friendly videos that help reduce stress and lift mood science backs it up. Care centers using memory lane TV report, big and less need for medication memory. Lane TV is available for both home use, by family members and caregivers, and in professional care facilities. More information and links to memory lane TV are in the show notes below. Check it out. And we're back even as a private practitioner dentist matter of fact, I remember the name of my first AIDS patient in the 1980s. About a third of my practice were kids with HIV aids. I remember a couple of Thalassemia patients and when consulting with physicians at the time, having basically such little knowledge of what was going on and, and even treating dental patients and considering the systemic effects of their disease state.

Stephen Spielberg (00:36:57):

Yeah. Well, you know, the, this, this is the joy of being a practitioner. Yeah. And, and we've, we've talked about this, Larry, both, both on, on, on the dental side and, and on the medical side. I had a professor in medical school who used to say that you will do well in medicine if you're used to live living in and accepting and working in open-ended intellectual situations. You're presented a patient and you do everything you possibly can for that patient, despite not having the knowledge to do certain things that you would like to do. But you also know that you have an obligation to develop the new knowledge to improve the life of hopefully this patient. But for sure, the next patient coming down the pike. And, you know, it's, it's, it's medicine is a joy. And I also worry that taking the joy away from both practitioners and scientists by ill-informed politically based rhetoric is, is, is harmful not only to us as docs or patients, but to everyone.

Stephen Spielberg (00:38:29):

I, I, I wanted to tell you a story about two patients I took care of that I think may bring a lot of this into, into a rather practical and realistic light. A story of two brothers who I was privileged to care for throughout their lives, from birth to their deaths, both of them in their mid forties, what it taught me and how their stories should be informing us as a compassionate, thoughtful, creative society. The first brother was, was born when I was a fellow at NIH in genetics, important role of the NIH in training physicians in subspecialties. We got a call from a neo neonatologist who had a patient in his newborn nursery severely ill with several unexplained both blood and metabolic abnormalities. Could we come over and see him and see if we could help figure something out? I would point out that the NIH still has something they called the NIH Undiagnosed Disease Network, where physicians from anywhere in the country can send in a note about their patients and groups of experts can be brought together, both within NIH and within university settings to see if they can help.

Stephen Spielberg (00:40:18):

Pretty cool when you think about it, particularly at a time that our science has gotten to the point where we actually can help with a lot of these. So together, and this is a true story with colleagues at the NIH, at the University of Colorado, at the Karolinska Institute in Sweden, at the University of Michigan, at the University of Athens and in Paris.

Stephen Spielberg (00:40:49):

This was a very rare disease we were working with. We wanted to talk to everybody and anyone who had any knowledge of what was going on, we were able to figure out the genetic abnormalities of most of his symptoms, and together developed ways to treat his metabolic acidosis, some of the hematologic problems that he was having to make his life better. I will point out it took us 15 years after that to figure out what the specific gene was at a molecular level. But even not knowing that together with the other docs who were taking care of a few of these rare patients, we were able to figure out how to make these patients' lives better. So you don't need to know everything. You need to be dedicated to the cause. So again, this required clinicians, and because the folks at NIH are only available so long, we also had to rely on general pediatricians to take care of these children.

Stephen Spielberg (00:42:03):

Okay? So it required us talking, it required specialists, it required basic scientists and cross training of all of us. And I began learning how to get help, collaborate with colleagues around the world, how to get help for parents of critically ill children. And this child's mom actually founded an organization to help other parents of critically ill children to access both specialty care and general care. He had a brother who was born several years later, again, had the same abnormality, but I will share with you how they were very different human beings knowing about his brother's illness, though we were prepared to deal with the acute events in the nursery. And his nursery car course was vastly simpler. And he went home very soon from the nursery. And I began to understand and remember doing sciences, also learning. I began learning how to deal with rare genetic diseases, work with organizations such organizations for rare diseases so that we could all get together and share our knowledge openly and transparently in the literature, in meetings, and in peer review science to get grants to do this work.

Stephen Spielberg (00:43:50):

A couple of other points, while both brothers shared some of the metabolic and hematologic problems and they had the same gene abnormalities and also had some neurologic and speech abnormalities, which were similar they differed as much as any two brothers might differ. They were people. And when we talk about rare disease and genetics, or we talk about autism, we're talking about people bullet. They share different health issues, but also were different. The older brother had congenital heart disease and required heart surgery. He also had scoliosis and required orthopedic surgery. He also had one of the most buoyant personalities. He was hard to understand because of his speech problems. But this was a guy with personality. He lived in an assisted care facility and was asked to testify in front of Congress, which having done that multiple times, I'll tell you, it was pretty scary <laugh>, right from the word go.

Stephen Spielberg (00:45:17):

But when he was asked by a congressman why he was there, he said, simply because people like you need to meet people like me. Mm-Hmm <affirmative>. There's a bit of wisdom and one that we need both on the medical and the political side. The younger brother didn't have most of the physical problems that his older brother had. So if you said, did the disease include congen, congenital heart disease and scoliosis? Well, yes and no. But calling it a spectrum didn't help. We just def defined exactly what was going on in each of the patients. He too lived in an assisted living facility. A, despite his struggles in life, he influenced people.

Stephen Spielberg (00:46:16):

How can kids like this influence the broader society? Well, I think it's really worth at this time when both science and people with who are different and people who have rare disease are under assault. How do we measure what's a good wife? I don't pretend to know. Look, I, I, I've been a doctor for 60 years. I I have kids, I have family members. I have friends. I have a great number of mentors who helped me in my career. But how do you judge a good wife? Well, first off, I rank my patients as my most important teachers. I learned more for caring for kids like these two brothers and their parents as I did from any of my medical school faculty or my PhD advisors or whatever, because the job is people. Again, it all comes down to that. And I thought that in this particular time and discussion and living in the senior community, <laugh> where we're, we're kind of used to age, my sense of chronic lot chronical chronologic age is totally different than it used to be. I have friends in their hundreds who are a heck of a lot sharper than I am. So it's and it is interesting. But we do think about mortality. And I thought about funerals. I told you both of these patients died in their forties.

Speaker 4 (00:48:22):

I,

Stephen Spielberg (00:48:24):

The families asked me to speak at both their funerals, and I was truly honored to. But really, I was hardly the key participant in the, but let me tell you how these kids impacted the communities they lived in. The older boy loved flying. And his father had a friend who was a pilot who used to take him up to fly. He was at the funeral. Nearly all the physicians who ever cared for the kids were at the funerals. Their primary care doctors, nurse practitioners who had cared for them, people from the NIH chil, people from children's hospitals, where they had received tertiary care. The staff at the assisted living facility, each of the boys lived at a different facility independently. The staff of both the facilities were at the funerals years before the older boy died. He, he had lived at he had worked at a Home Depot as a greeter and was very popular there. And there was an episode in Washington of a guy going around shooting people. It was quite a horrifying time. And at one point, he was working in the in, in the store, and there was a lockdown. They locked down the store

Stephen Spielberg (00:50:24):

And his dad realizing that he, he was there for hours and he need, he did need medicines that he didn't have because they expected him to be coming home much sooner. Went to the store and was able to negotiate getting in to give him his medicines. Home Depot sent flowers to his funeral. He hadn't worked there in 20 years. He impacted people in a very special way. The younger sibling, same array of doctors and caretakers. He had a particular love for music, which his parents picked him up, picked up very early, and his mom knew the conductor of a local community orchestra, and went to him and asked, do you think there is anything he could do around the orchestra to be around music? And the conductor pondered and said, well, you know, we always need help arranging the chairs. You know, it's a community orchestra, right? Gotta arrange the, the, the, the, the chairs on the stage. And he said, do you think he could do it? His mom said, yeah. And he said, do you think he could sit through rehearsals and performances? And the conductor said, God knows he did. And he used to go to all of the concerts, and again, who came to the funeral? Musicians and the conductor. And he said in his talk

Stephen Spielberg (00:52:18):

That when asked to do this, he said, I must be nuts. You know, what, what do I need this additional stress for in running, in addition to running a community orchestra? And he said, what he learned is that ever since he has had kids with special needs who love music, who help out with the orchestra, and the orchestra helps them out. To me, again, that's what this whole business is about. And why my heartaches, when I hear assaults on science, assaults on kids who are different, loss of the progress that we've made. My PhD was sponsored by the first grant from the National Institutes of Child Health and Human Development, HD oh oh oh one, that the chairman of pediatrics at University of Chicago, where I was privileged to go to medical school, applied for, as a way of training the next generation of pediatric scientists. Practically everybody funded under that grant, ended up being a pediatric scientist, some in government, some universities, some pediatric hospitals, some around the world. That's what that was about. That grant was still in place as of five years ago when they last checked in on all us to see what we were doing. I don't know if that grant will survive this, the public, all of us together have an obligation to make sure that those things will happen and will continue

Larry (00:54:38):

When you personalize the effect on human beings that these federal funding freezes. Cause it becomes a, a tragedy of the worst order. There are, what, 45,000 active trials as of April this year. 2,500 of them were listed in the New York Times as being ended or delayed. How many personal lives, how many personal stories are affected by politically motivated funding cuts?

Stephen Spielberg (00:55:39):

Yes,

Stephen Spielberg (00:55:40):

Indeed. And unnecessarily. Well, I am a citizen of our beloved country, too. I pay taxes. I don't want my tax dollars wasted. Right? I want 'em used. Well, I have seen how my colleagues in government in academ have struggled through the years to do better and better and better.

Stephen Spielberg (00:56:14):

And look, we are all human. We are all mortal, and we are all imperfect. So just some things happen that shouldn't happen. Yes. And we work to fix those things. And I've seen in my career, incredible evolution of both the quality of the science, the technology that we have available to dedicate to our patients. And the hope that that brings to all of us, not just children, not just to people with rare disease but for those of us who are feeling a little bit older these days we all have a stake in this. And the, the, I suppose the greatest thing to me, and I'm not an economist. I can balance a checkbook, but the, but the bottom line to me is opportunity costs.

Stephen Spielberg (00:57:18):

When we do things that are not the highest quality, we lose the opportunity to invest in things that may in fact change the life of myriad people here in our country and around the world. And it's unnecessary. It's inappropriate. I think it diminishes all of us when things like this happen. My hope is that, you know, all of the various organizations involved in advocating for patients, for children, for pregnant moms, for the elderly, all of us see that it is part of our responsibility. It's part of our opportunity because the science has gotten so good that yes, you still are. Can you still hear me? Yeah. Sorry. I <laugh> I'm not used to wearing iPods. But anyway, that, that all of us have the opportunity. And because we elect people and because we have a society where we are supposed to be citizens and actively involved, I'm hoping against hope that all of those who have a stake in this speak up work towards having things in a way that, in fact, we don't make fun of science. We don't make fun of patients. We support the science, and we assure the quality of that science, and we assure that the investment in that science is translated into the best healthcare we possibly can.

Larry (00:59:27):

What can I say? Steve? Thank you. Thank you for, for the perspective that we all needed.

Stephen Spielberg (00:59:41):

Thank you, Larry. It's been an honor. I hope this helps a little bit.

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