EPISODE 445

The Role of Philanthropy in Innovation: Dr. Bennett Nemser, Chief Program Officer at the Steven and Alexandra Cohen Foundation

01-17-2024

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Shiv Gaglani: Hi, I'm Shiv Gaglani, welcoming you to Raise the Line with Osmosis from Elsevier, an ongoing exploration about how to improve health and health care. Today, I'm delighted to welcome Dr. Bennett Nemser, who is the chief program officer at the Steven and Alexandra Cohen Foundation. In that role, he manages the Foundation's various health portfolios, including the Cohen Psychedelic Research and Health Initiative and the Cohen Lyme & Tick-Borne Disease Initiative. 

 

Dr. Nemser has a PhD in public health with extensive experience in global health systems in developing countries and related research. Prior to joining the Foundation, Ben was a senior monitoring and evaluation consultant for UNICEF and the World Health Organization and worked for Columbia University as an epidemiologist and data systems manager. He also holds a master's degree in business administration. 

 

So, Ben, thanks for taking the time to speak with us today.

 

Ben Nemser: Of course. Thank you so much for having me.

 

Shiv: So, the first time we spoke, I was pretty impressed with your background in global health. We also shared some time living in Africa. For our audience's sake, would you mind giving them some career highlights, including what got you interested in public health? You got your MBA as well, and then how you got into epidemiology?

 

Ben: Yeah, sure. So, after school, after I got my MBA, I started my career in the Rhode Island state government. It was after the dot-com bubble burst and I was up in Rhode Island. I just had sort of been more aligned and more interested in the public service, nonprofit space. And so I ended up getting a job as a legislative budget analyst for the House of Representatives there. Rhode Island is definitely not something I foresaw myself doing, so it's definitely a learning experience. I sort of just got a stroke of luck. 

 

One of the agencies that I had to analyze and provide an evaluation and recommendations to the legislature was the Department of Health and so I dug into all their programs and how they were spending their money. That's like my first foray into public health. A few years later, I ended up at a position with the Rhode Island Treasury, which was a great position, but I was in a windowless office, crunching numbers in Excel -- I love crunching numbers in Excel...I'm a very big fan of Excel spreadsheets -- but I kind of wanted something different for myself. And so I had sort of that mid-20s inflection point, like, what do I do now? 

 

I decided to go back to school for public health and I was most interested in global public health.  I applied to Columbia and got in. That turned into an internship between my first and second year which was in Rwanda with the Earth Institute. I was working on integrated rural development projects there and they ended up hiring me after I graduated. So, you know, I started working for Columbia. 

 

It was a large project across about ten African countries doing, work in healthcare, education, infrastructure, and agriculture. I was working on the Monitoring & Evaluation Team, so I was doing survey work and outcome monitoring and designing text-based messaging systems for community health workers to track patients in rural communities with no internet access. It was all very, very fascinating and fascinating work. Obviously, you know, we were trying to have a big impact in those rural communities to help them lift these communities and families out of poverty.

 

Shiv: Yeah. What an incredible transition from Rhode Island in the Department of Treasury to then living in Africa for some time. When we connected, I think I had just come back from our trip to Kilimanjaro, raising awareness for rare diseases with the Year of the Zebra campaign, and then visiting our partners in Butaro, Rwanda at Partners in Health and the University of Global Health Equity, which is a podcast we did as well. 

 

I'm curious, how long were you in Africa for? And then what were some of the highlights, maybe both professionally and personally that you're most proud of?

 

Ben: That's a good question. I guess my career spanned about ten years working in sub-Saharan Africa. I mean, most of it was New York based, and so I would be going for weeks, months at a time. I was never based in Africa for more than like two or three months. After I had worked with Columbia, I moved over to the UN as a global health practitioner. It's kind of one of the dream jobs is working with UNICEF. 

 

I started at the UN Special Envoy and then UNICEF and the WHO, mostly working on a project for maternal newborn child health commodities. These are low-cost commodities -- antibiotics, birth control, et cetera -- and getting those to communities across sub-Saharan Africa. Oftentimes they're incredibly inexpensive -- we're talking pennies, maybe a dollar -- but it has to be at the right place at the right time when a woman is giving birth or when the neonate needs it. Otherwise, it's going to be ineffective, right? So, it was about trying to figure out how we can do those and partner with these countries to do it most effectively. 

 

Then I went on to some maternal newborn health quality of care initiatives at WHO. So, I mean, it's hard to pick particular highlights out of ten years. There's so many good memories associated with that. 

 

Shiv: Yeah, I can imagine. That's definitely close to our heart at Osmosis because, as we talked about, I was born in Namibia and we've given a lot of free access to Osmosis as a learning platform across sub-Saharan Africa, as well as other regions in need. I think we bonded a bit over that experience that you had there as well. 

 

Maybe if you pick just one personal highlight...like was it a Serengeti tour, or, you know, for me, the Kilimanjaro trip was a big highlight. But yeah...we like to humanize our guests and the work they do, too, because you still have other things you do beyond work. So, anything that really stands out as a favorite personal memory in Africa?

 

Ben: I mean, a fun one was when I was in Rwanda. I had brought my then girlfriend over, who is now my wife, and it just so happens that a colleague's cousin was getting married to someone from Canada and they couldn't bring over any family members, and so they asked me if I would be his best man. So, with my wife there and myself, we were basically in this traditional Rwandan wedding having just met them the day before. So, it was quite funny and a good cultural exchange moment. 

 

Shiv: That's amazing. I wonder if you had to give the toast in Swahili or something. (laughs)

 

Ben: No, but I did do a little dancing. My wife still ribs me for it. I got a lot of chuckles associated with that. It was a good time. 

 

Shiv: (laughs) So, we'll drop the YouTube video of Ben dancing at the Rwandan wedding in our show links. 

 

Ben: (laughs)

 

Shiv: So, moving from the work you were doing for the UN and WHO in sub-Saharan Africa to the Steven and Alexandra Cohen Foundation, maybe you can tell us about that jump, that career transition, and then what you started doing at the Cohen Foundation and how it's evolved. 

 

Ben: I started my initial work at the Cohen Foundation and I was hired to manage the Lyme & Tick-borne Disease portfolio. They were looking for someone with a background in healthcare but who also had a personal connection to Lyme and tick-borne disease and I am a caregiver for a family member. I think it was a really good fit because a lot of the stuff that I was doing in Africa was around systems building and oftentimes that's what's needed in some of these areas like Lyme and tick-borne disease. And now, I've sort of expanded out to our entire health portfolio, including psychedelics.

 

We're not just looking at one thing, right? You're looking at the entire system, like, what are the inputs that are going into the system -- the financial resources, the human resources, the skills, the quality of other inputs, whether it's commodities or treatments -- and how are those actually being delivered to people. It's around access, demand generation, safety. So, really taking a lot of the lessons that I learned during my time, particularly with the UN, over to the Cohen Foundation has been really beneficial. 

 

Shiv: Yeah. When I was first introduced to you, I was pretty impressed with the scope of activities, as well as obviously the funding that the Cohen Foundation has given out to so many groups. Many of the guests we've had on the podcast before I even met you were people whose work, research or their clinical care has been made possible through you and the Cohen Foundation. Examples include Dr. Fred Barrett, who runs the Hopkins Center for Psychedelic and Consciousness Research; Dr. Michael Silver at Berkeley, whose team released the first edX MOOC, (Massive Open Online Course) on psychedelics; and then Al Garcia-Romeu at Hopkins as well, who I think is doing some work on psychedelics and Lyme or tick-borne illnesses, among many others. 

 

Maybe let's tackle psychedelics first, because we've been doing a lot around psychedelic- assisted therapy at Osmosis and Elsevier on the podcast. Most recently, we had the director of the NIMH, Dr. Joshua Gordon, on the podcast as well, who has been cautiously optimistic about psychedelic work. So, maybe you can tell us a bit about some of the highlights you and the Cohen Foundation have had in the space, ranging from backing Manish Agrawal and his team at Sunstone Therapies to, I'm sure, many others that I don't have time to mention. 

 

Ben: Yeah, sure. Let me just give a little background on the Cohen Foundation before we jump into the psychedelics. The organization is led by President Alexandra Cohen since its inception about 20 years ago. Alex focuses on US-based non-profits. They're looking to help people but also solve complex problems. So, the psychedelics falls into the complex problems that we're looking at. You mentioned size. As of last December, we just went over the $1 billion mark. So, we’ve provided over a billion dollars for charitable support to underserved communities and children's health and education, the arts, Lyme and tick-borne disease, psychedelics, veterans -- which I'll talk a little bit about later -- and then sustainability. 

 

I started at the end of 2017. And then in 2018, we got more interested in the psychedelics field. It was sort of funny: as with most of our giving, it's inspired by Alex's personal experience, but she came to it via regular, non-psychedelic mushrooms. She actually was suffering from Lyme and tick-borne disease for many years and one of the supplements that helps her is from Paul Stamets' Host Defense line of mushroom supplements. This is like turkey tail mushrooms for immune support...that type of thing. She became friendly with Paul Stamets and Louie Schwartzberg, who made the documentary film Fantastic Fungi, which we also supported. Then someone recommended Michael Pollan's book How to Change Your Mind

 

Alex read it and thought that psychedelics might have a potentially a tremendous impact and so she wanted to learn more. We first called Rick Doblin at MAPS (Multidisciplinary Association for Psychedelic Studies) -- who I know has been a guest on your show -- but he wouldn’t return our calls. We joke about it with him now, but we literally couldn't get past his secretary. So, we moved to a second name on the list, which was Roland Griffiths. So, we went down to Johns Hopkins. We already had a relationship with them from some of the Lyme work, so we got an introduction from our Lyme researchers and we sat knee to knee in Roland's tiny office and asked him what his big dream was. A year later in 2019, the first psychedelics research center at a major US university was born.

 

In our psychedelics portfolio, we fund a diverse array of indications from PTSD to depression, addiction, burnout, other mental health conditions, as well as pain disorders and infection associated chronic illnesses like Lyme that you mentioned. Veterans are an important emphasis or focus for us, so the MDMA-assisted therapy for PTSD has been an important treatment that we've been supporting for many years. We're part of the MAPS Capstone Challenge and then more recently, we’ve provided additional support. 

 

From our standpoint, I'm just kind of like ashamed that these breakthrough therapies have taken so long to receive mainstream acceptance and research funding. I mean, it's been thirty, forty years that they've been sitting on the shelf. Essentially, at least in my opinion, cultural stigma has restricted an objective evaluation of these treatments, which really has prolonged patient anguish, unfortunately. And so, I'm proud to work for someone who can transcend that stigmatic social pressure and is unafraid to take bold steps in the hopes of helping people suffering from these chronic conditions that unfortunately the medical establishment underserves with other treatments.

 

We have a vast array of those research areas, but we also want to focus on the system, kind of what I was mentioning before. So, we've funded training of practitioners, including social workers and nurses at Columbia and UPenn; safety is really important to us, so we’re funding clinical guidelines as well as practitioner certification and making sure that we're getting good ethical practitioners and well-trained; then, of course, we focus a lot on access because, again, it brings it back to some of the underlying ethos of the foundation which is trying to improve services for underserved communities, and so we want to make sure that we've funded reimbursement strategies around getting on insurance. 

 

One of the areas that we've been funding more recently is in group therapy because we think that will help drive down some of the costs and actually may be more effective for certain groups. You could think about veterans getting together and it might actually be beneficial to be doing it in a group setting as opposed to individually. Then, we’re supporting other various field building and public education components, like you were talking about the MOOC, and things along those lines.

 

Shiv: Yeah, what an incredible, incredible backstory and how much of an impact you and obviously Alexandra from her personal experience have made in like, what, five years on the entire space? We were both at the MAPS conference, Psychedelic Science, in June. There were 11,000 attendees and certainly much of it would not have been possible without the legitimacy and credibility that came from the research studies that you guys have funded with MAPS. Obviously, Hopkins carried a lot of weight with Roland Griffiths plus all of his collaborators, and then Michael Pollan with his book. So, who knows...if the money hadn't come in and Alexandra hadn't had that personal experience, how much longer we'd have to wait to get to where we are now? 

 

Ben: Yeah, it's interesting to think about the role of philanthropy and these other groups because if we were waiting for the government to do this...I mean, we basically were -- they haven't funded anything for forty years, fifty years -- so, I think the role of philanthropy has to come in and oftentimes be the innovator. I credit Alex with having that burst of innovation around this and eagerness to lean-in to those projects and put her name on it. Because, again, there was a lot of stigma. A lot of people were maybe giving money but not mentioning who it was from. We joke because we had a lot of battles and controversy in the Lyme space and then we get into the psychedelic space and it was non-existent, essentially. 

 

Shiv: Fascinating. So, before we go to Lyme, there's been so much movement, so much excitement -- a lot of hype too, admittedly -- in the psychedelic space over the last few years. Looking over the next five to ten years, what are you and the Cohen Foundation most excited about regarding psychedelics? You mentioned a couple of things like group therapy. Clearly for certain indications including, for example, substance use disorders -- where AA is already a really effective method to help people get sober or stay sober -- that combined with psychedelics could be very interesting. So, yeah, what are you excited about for the next couple of years in the psychedelic space? 

 

Ben: I think addiction is going to be an area where there may be a lot of benefits. We're seeing psilocybin used for alcohol use disorder, meth disorder...we funded one in Portland at the VA out there. As for other psychedelic substances, ibogaine is gaining a lot of traction and may have some benefits. I think the idea is we're going to start to figure out how each psychedelic may have different benefits for different groups of people for different indications. It's still very nascent, right? We've done a lot in the last three or four or five years -- and, of course, many others like Rick Doblin and Roland have been doing work for twenty, thirty, forty -- but there's so much that we don't know. 

 

So, I think we're really excited. It's going to be really complicated to see how these actually get put into sort of mainstream medicine. We see MDMA approval by the FDA likely in 2024 -- fingers crossed that everything goes smoothly -- but it's a different dynamic for practitioners, right? It's a different mode of providing care. Typically a psychologist or a psychiatrist will not want someone to be in an altered state and now we're actually asking them to put them immediately into an altered state. So, there's a lot of things that we have to learn from that. I think we are concerned, as many others are, that you worry about the elite capture aspect of it. You don't just want it for people that have $10,000, $20,000 to do it. We need to get the price point down so that we can make sure we have access to a lot more people that can benefit from this. 

 

Shiv: Yeah, absolutely. Group therapy, telepsychiatry, AI could play a role in lowering costs, as well as maybe novel compounds that are shorter duration potentially. If, you know, you don't need one or two facilitators for a whole day to run a session in person, maybe only a couple hours. But before we go on again to tick-borne illnesses and chronic illnesses that are infectious in nature, I think I wanted to give you the opportunity to talk about veterans as well, because you mentioned some of the work there. When Rick Doblin and Michael Mithoeffer were on the Raise the Line podcast, Rick specifically mentioned working with that group was a choice because there's obviously high need for veterans to get care, but also there’s bipartisan support. It's brilliant because even at the psychedelic conference, we had the former Governor of Texas Rick Perry, as well as Governor of Colorado Jared Polis, speaking and it's very bipartisan in nature...the support that comes for doing anything we can to help veterans with PTSD and obviously try avoiding helping them not commit suicide, which is staggering how many of them do that every year.

 

So, yeah, do you want to talk a bit more about veterans specifically because you had alluded to that? 

 

Ben: It’s very much a focus area for the foundation. We have a sister agency, the Cohen Veterans Network, which provides free mental health services to veterans and their family. I think we're at like twenty-four clinics across the country, mostly near Army bases and military bases. Essentially, we're their largest grantor, so it's a very close relationship there. We see  firsthand how difficult it is to help, how challenging it is.

 

Unfortunately, dealing with these veteran families, they have this threat over them all the time in many respects. I was just reading an article yesterday that said veteran suicide is down and it's now seventeen veterans a day who commit suicide. I guess that is moving in the right direction, but it's still so high. So, we've been trying to provide as much help and support to veterans and their families as we can and we're hoping that, using MDMA for PTSD will helps as well as using other psychedelics. I mean, they're not different from many other groups in the country that can benefit. 

 

Maybe it's not PTSD. Maybe it's depression, maybe it's other mental health issues or addiction issues that they may be dealing with. And so, we want to try to see how this entire group of under-researched compounds may be able to benefit them.

 

Shiv: Yeah, so many promising indications, not just for so-called abnormal psychology, but also -- as you know, very well, having supported Roland Griffiths and his protege, Dr. David Yaden -- positive psychology, helping people flourish, because once we get them to normal, maybe we can help them be more creative, help them be more socially conscious, and maybe we'll have less need for veterans by not needing to have any wars as well. 

 

Ben: Yeah, and I guess as an extension of what you’re saying, there are things that happen to us, like the death of a family member, right? You do get depressed and there's grief, and sometimes it's not as easy to rebound from that. These compounds may be able to help in times of shorter-term depression, but maybe help with that flourishing as well.

 

Shiv: Yeah, and one last thing on that point for psychedelics...that's why I really love the dyad study. We had Bill and Brian Richards on the podcast, as well as Manish Agrawal, at Sunstone Therapies which is doing this fascinating study of not just how these compounds can help people at the end of their life or with terminal cancer diagnoses, but their caregivers too. As you know yourself being a caregiver, it's really hard and so I'm crossing my fingers that this study shows some positive results about not just the patient, but also the caregiver being supported through these compounds or the therapy. 

 

Ben: Yeah, I think it's such an important component, because oftentimes it's the caregivers that hold a lot of grief associated with death or an illness of what they could have done better, what they should have done and so on. Then I'll say that some of the end-of-life issues that we're talking about, the existential distress -- this is some of the research that Tony Baus has been doing for decades -- but really thinking about how that end-of-life experience doesn't have to be so emotionally painful. It can actually be an opportunity to connect with those people that are still here, and it actually can be a much more loving experience than as sort of depressing as oftentimes, unfortunately, it is. 

 

Shiv: Absolutely. So, let's move on to Lyme and tick-borne illnesses, because I think the Cohen Foundation is the largest private funder in the U.S. of Lyme disease, so maybe you can give a highlight of how you guys got involved with that and then some of the highlights of the work that you've done in this area. 

 

Ben: Sure. Like I kind of mentioned before, Alex has suffered from Lyme and tick-borne disease for many years, and so she wanted to focus on finding innovative ways to improve diagnostics and treatments and sort of the basic research. So, since 2025, the Cohen Foundation has given just under $100 million to Lyme and tick-borne disease, which is the largest vector-borne disease in the US. An estimated 476,000 people get infected every year. In terms of funding, on an annual basis, Alex Cohen, which is one private citizen, often spends more than on Lyme disease than the CDC, which is a bit scary.

 

Unfortunately, patients cannot access quality care for Lyme and tick-borne disease. We're still using the same diagnostics and treatments from thirty years ago. Diagnostics are notoriously inaccurate -- in particular, the standard two-tier tests are roughly 50% accurate in early disease -- because they're an antibody test, and the body takes roughly four weeks to mount a detectable immune response in many people. Obviously, as a clinician, that's the exact time you want to be treating someone appropriately, right after a tick bite, so clinicians need to treat based on symptoms, not the diagnostic results. I would encourage everyone listening to watch the documentary The Quiet Epidemic to understand more about why Lyme testing is so inaccurate and actually how the medical community has sort of failed to correct this over the last thirty years. 

 

Moreover, the standard treatments fail roughly 10% to 20% of the time, even with prompt treatment, and so this leads to “Long Lyme” or what oftentimes researchers called Post-Treatment Lyme Disease Syndrome, where patients have prolonged, often debilitating symptoms for years or oftentimes even decades, unfortunately, with some people. 

 

So, you can do a little fast math: with half a million people getting Lyme each year, and 10% to 20% having treatment failure, even with prompt treatment, there's an estimated two million people in America with Long Lyme. And that's not my number...that's a number recorded by CDC. That's roughly the same population as Alaska, Vermont, and Wyoming. So, imagine everyone in Alaska, Vermont, and Wyoming all had the exact same disease. The sad news is that there's no treatment guidelines for Long Lyme. 

 

So, I have a pop quiz for you Shiv, when was the last time NIH funded a clinical trial on Long Lyme?

 

Shiv: Ooh. Just based on your reframing of it, I would have to assume it's been...

 

Ben:  It's not last year (laughs)

 

Shiv: (laughs) At least a decade or more.

 

Ben: Yes, eighteen years to be precise So, essentially NIH has abdicated their responsibility to find any treatment options for these two million Americans, and that's not even getting into the issue of ticks can carry more than one disease.

 

Another pop quiz, how many diseases do ticks carry?

 

Shiv: Dozens, I feel, right?

 

Ben: Yeah. Last time I checked -- which is important because we're adding new ones every few years -- but it was eighteen. So, around twenty is a good guess. 

 

And so, last question for you, how many clinical studies have been conducted on patients with more than one concurrent tick-borne disease?

 

Shiv: Less than 5. Zero.

 

Ben:  Zero. So, as a clinician, if you see someone coming in with multiple tick-borne diseases, how do you treat them? You have no evidence-backed science to do anything with them. We assume that you treat the Lyme first, and then you treat the babesia or the bartonella or whatever second disease, and we assume that that would work, but we've actually never tested it. 

 

We've done studies on ticks -- this is in New York and Connecticut -- and 56% of the ticks had Lyme disease, and 19% had an additional co-infection. In other studies we've looked at blood samples from the US and Europe and about 65% of those with one tick-borne disease had a second. Now, there might be some biases -- the ones that are getting in, because they have a tick-borne disease -- but clinicians are going to be seeing a lot of this, and unfortunately, they don't have the necessary evidence to be able to treat them well. So, that's a challenge for those clinicians, that they're left in a very difficult position to help deal with this patient. 

 

So, over the last, like, eight years -- in the face of this sort of NIH abdication -- Alex Cohen has taken the leadership role in trying to find treatments for people with Long Lyme. The Cohen Foundation has funded many basic and translational research projects. Currently, we have a diagnostic prize competition called LymeX, which is a public-private partnership with the Department of Health and Human Services. It's about a $10 million prize to getting new Lyme diagnostics through the FDA. 

 

We're also funding clinical service centers in hopes to help patients immediately. These are at major universities. In addition, we funded the first clinical trials network for Lyme and tick-borne disease in 2020, so we're looking to clinically evaluate various treatment options and disseminate that knowledge about effective clinical care so we can help the masses across the country and across the world. A few clinical centers are great, but they're obviously not going to treat two million people, so we need to find what's working and then disseminate it. 

 

Shiv: Yeah, no, incredibly comprehensive...the approach you guys take from bench to bedside to policy. This year, which we are calling the Year of the Zebra, we're focusing on rare disease awareness, and at one point, I'm sure many of these tick-borne illnesses were considered or are still considered rare diseases. The definition in the US for a rare disorder is it affects fewer than 200,000 Americans. Obviously, Lyme already affects over ten times that amount, and we're worried about climate change may be contributing to this problem, making it worse.

 

Ben: Oh, yeah. Especially with ticks, yeah. I really like what you're doing with Year of the Zebra because I would joke about this, that Lyme used to be a zebra, and now it's a horse. Unfortunately, clinicians may have that mindset that it's rare, but in actuality, when there’s a sudden onset of body aches and joint aches and all these things in the summertime with a nine-year-old, you know, you’ve really got to be thinking Lyme, and with a test that's not accurate, you have to be relying on your own clinical judgment more in that context, because it can be debilitating for that child. 

 

By the way, I should say that we have this large portfolio with Lyme and long Lyme, but in the last few years, we've expanded it to include other infection-associated chronic illnesses such as long COVID, chronic fatigue syndrome, and MS has an infection initiator. We just actually announced support for a clinical center at Mount Sinai with Dr. David Putrino, which will treat patients with all these infection-associated chronic illnesses and hopefully provide opportunities for other clinicians to learn from their clinical experience as well because we're seeing a very similar symptom set from long COVID to these fatiguing syndromes. So, as a clinician -- we try to think a lot of times as clinicians -- when a patient comes in, you've got to have that differential diagnosis and really try to figure out which one it is. It's not always easy when there's so much commonality between these infection-associated conditions, chronic conditions.

 

Shiv: Yeah. I was gonna mention the Cohen Center for Recovery from Complex Chronic Illnesses. We had Dr. Lisa Sanders on the podcast, who's leading Yale's Long Covid Multidisciplinary Care Center. There's so much interest in long COVID, which hopefully legitimizes and brings more credibility to some of the issues that people have faced for decades now, where the paternalistic medical care establishment says, oh, the pain is in your mind,  and doesn't really giveattention to some of these patients. Hopefully, that tide is turning because of more people who are influential getting these conditions, more influential universities like Mount Sinai -- which you're funding -- and Yale doing research on these conditions. Do you feel like we should be seeing a lot more improvements in the next decade?

 

Ben: I think so. I mean, I think it was slow, right? You know, chronic fatigue syndrome...it took a long time to get acceptance in the medical and research community. Long Lyme took very long. It’s been a controversial process over the last thirty years. And then long COVID came and the issue with chronic fatigue and long Lyme is it was a trickle. There's a few tens of thousands of people getting it every year and so I think it was more easily dismissed. When long COVID came, it was millions of people all at once. 

 

It's funny, because you actually saw the same denialism in the beginning. I was talking to a lot of these groups and would be like, “Oh, yeah, they’re going to say this, and they're going to say this, and they're going to say this.” But of course, with so many millions of people having it all at once, it was too hard to deny. And so, I think there was a lot of credibility, and people realizing that they need to focus on it. In that context, actually, I will say NIH did fund some work there. So, they definitely put resources behind long COVID in the last few years. 

 

Shiv: Very good. Well, so as someone who is in an interesting position -- because you're both someone who's personally caring for a family member with long Lyme, but you have also helped fund dozens, if not hundreds of organizations and individuals doing research and clinical care in the space -- what advice would you give to our audience who are mostly current or future healthcare professionals about someone coming to their clinic with maybe a new diagnosis of Lyme or related infection associated chronic illness? You know, having worked directly with clinicians, what advice would you give them about that interaction?

 

Ben: It's a really good question. I know you guys are a learning company, and so what things have you learned? I mean, honestly, I'd love to have videos around how clinicians treat patients, when the diagnosis is unclear or the treatment guidelines are limited or even non-existent. It's very complex, right? And to take a line from the journalist Meghan O'Rourke, how do you treat someone who is, quote, living in a body on the edge of medical knowledge? 

 

You have to have empathy, right? You have to have some of those detailed conversations with the patients to talk about possible treatment options and talk about diagnostic options because you're still trying to figure out what it is. Talk to them about the risk profiles and let the patient make that informed decision. And most of all, be humble. Tell the patient what you don't know, We've gone through dozens of doctors, and the ones that we appreciate the most were the ones who could have those honest conversations and say, “Hey, I don't know how to treat you. I don't know where to go to next. Maybe we should talk to this person. Maybe we should talk to that person.” You know, you really felt like they were a partner in the process and less dogmatic in their approach. 

 

Shiv: That is great advice and definitely something we're excited to be able to work on, because a lot of Osmosis has been focused initially for the first few years on just explaining what we know about these conditions that help you pass your exams to become a doctor or nurse. But increasingly, over the last few years, we've done a lot of the so-called soft skills, which become the hard skills: how do you become an advocate for your patients? How do you leverage new clinical decision-making tools that have AI to maybe get to a diagnosis faster? I'm sure that's been one of the most frustrating things for people with long Lyme is just years and years getting to diagnosis, which, again, is a common theme we hear from rare disease patients as well. Really any condition that is not taken as seriously as it should -- either due to lack of awareness or willful dismissiveness among clinicians -- I think could benefit from this type of educational content. 

 

Ben: Oh, totally. Another area is just sort of injecting that humanity into the clinician patient relationship, you know, clinicians leaning on their empathy, compassion, and meeting the needs of the of the patient. We talked about treatment guidelines, and they should be guidelines, not like a tool to unjustly stunt patient options. Because, oftentimes, guidelines are built on weak evidence -- underpowered studies looking at average effect sizes. That's typically a far cry from precision medicine. And in the areas where NIH or philanthropy does not fund, you may not have any science-backed guidance at all. 

 

Kind of what you were alluding to, I know patients who are fearful to go to the doctor because the doctor negates their experience or symptoms or chalks it up to being psychosomatic. But it's often just a patient that the clinician or medical system doesn't have answers for yet. That's really frustrating and it can be dehumanizing when you have this debilitating disease, and the people that are trained to help you just dismiss your suffering. 

 

It's funny you bring up AI, because I think about this a lot. With the advancement of AI, I personally believe there'll be an increased pressure to remove costly elements of the healthcare system, such as physicians, to be replaced by less costly AI, right? So, if clinicians did not connect with their patients through their humanity, then replacing clinicians with non-human intelligence seems inevitable.

 

Shiv: Yeah, that's a theme that's come up as well in the podcast. We've had people on like the head of data science at Stanford and Eric Topol, who's obviously written a lot about AI and healthcare. And I agree with the possibility of AI replacing maybe just the rote memorization and knowledge application. Why you would go to a so-called expert when you have an AI that can read millions of research papers, case reports and clinical trials, and is up to date on all the evidence-based guidelines and non-evidence-based guidelines by plugging into data sets that also include maybe Eastern medicine traditions or indigenous medicine traditions that most of us in med school get very little training on.   

 

So, an AI will replace a lot of the memorization aspects and application, which means that, hopefully, our listeners will double down on the things that make them most human -- being the soft skills, which become the main skills -- that I think can help people change patient behavior in the case of lifestyle associated chronic illnesses, or feel supported and feel connected in the case of every other kind of condition or medical issue that comes their way. 

 

While we're on the topic of advice, I was just gonna ask more broadly...you've had a very interesting career and it still continues to evolve. What advice would you give our listeners about approaching their careers in healthcare or public health, etc? 

 

Ben: I think one thing that's worked for me is finding something that you're passionate about. It feels a lot less like work when you've got that passion for the role. For young career folks, I always say take your internship seriously. I've had a lot of interns at the UN and at the Foundation, and you'd be surprised at how little some young folks take internships when, in my experience, they've turned into jobs and they've turned into very important components of my career. For me it really rests on finding that that passion.

 

There's so much need, so find the areas that people aren't working in...the road less traveled. You'll find a lot of folks there that really need your help. Many people get into the field to really help people and make a difference in people's lives and I think there's so many opportunities to do that. I'm sure from a clinician standpoint, it can feel very hard because there's so many other pressures on you, whether it's the financial aspects, or insurance requirements and all these other things about running a business or falling in line within a large behemoth health system. But I think keeping that focus on helping people, and being open to identify help for yourself. 

 

As a caregiver, I know how much people oftentimes need support. But I also like to remind other caregivers that they're a person too, and need to take care of themselves. Back to our psychedelics discussion, we did fund University of Washington to study psychedelics for burnout in frontline health workers because we see it can be debilitating. I mean, your jobs at the frontline can be so demanding, and so emotionally demanding especially in certain fields. So, you need to take care of yourself along the way. 

 

Shiv: That's wonderful advice and the Washington study was actually one of the highlights at Psychedelic Science because that's something we continue to cover here at Raise the Line. Indeed, one of the reasons we called it Raise the Line is that a lot of what Osmosis is focused on is training more healthcare professionals. But if it's a leaky bucket, and the existing healthcare professionals are leaving the profession because of moral injury, burnout, and obviously many other reasons we’re not going to strengthen the healthcare system. Suicide is an issue as well. Luckily not seventeen a day, like with veterans, but still too many. So, that's great advice: self-care and find the passion. Obviously, it's led to a lot of high leverage impact that you and the Cohen Foundation have had. 

 

My last question for you is an open mic. Anything else that you'd like to tell us about you, about the Cohen Foundation, or the space that we haven't covered?

 

Ben: Sure. We talked a little bit about it around NIH and their funding and it's an area that I think about a lot. Obviously, we sort of go hand in hand with some of the NIH funding. Oftentimes, philanthropy is filling in gaps that may not get funded from governmental institutions. And, you know, their role in selecting grants, I think, is probably the most important thing that they do as a pure function, right? There's about $40 billion in NIH funding a year and 80% of it is external. So, most of it is giving grants out to other people to do the research. So, selecting those grants is probably the most important function that they have. 

 

Unfortunately, in many conditions -- we're talking Lyme, we're talking Alzheimer's or chronic fatigue syndrome and other areas that don't have real solutions and real innovation in the last several decades -- I always kind of wonder if there's an opportunity to think about a new approach to selecting grants. I mean, they only do a peer review process, and that has its pros and cons, right? One of the pros is that you're asking other peers to evaluate these grants and so it tends to be risk averse, which is good when you want to take care of taxpayer dollars. That's an important feature. But the problem is oftentimes it may be too risk averse, and it doesn't benefit innovation and so there's very little innovation that happens from that. 

 

There's also obviously inherent biases, because essentially people that are reviewers have to have been selected to get a grant before -- that’s my understanding of the process -- and so it's almost an exercise in group think. You can't ask people to be innovative if they all kind of think relatively the same, and so they're selected into this group because they think the same oftentimes, or have similar thought processes or the ways they approach a certain condition. 

 

It's not that I would say throw away peer review. That's not my proposal. But I would argue that maybe we actually have a second track, maybe having 20% or 30% of the funds going to more of an innovative way of -- for lack of a better word -- trying to hit home runs. Really focused on innovation. And yeah, you're probably going to have more strikeouts, but you may actually advance these fields in an effective way. 

 

Secondly, you have an opportunity to then compare the two, right? Are we actually doing better on one or the other? Are they complementing each other? Sometimes you need to take a big swing to get yourself over a certain hurdle, and then the more risk-averse option can fill in the blanks. So, it seems to me that you kind of need a comparator in this process, because while NIH is so scientifically oriented in their main function of selecting grants, they actually don't have a scientific method to evaluate themselves in that process. Now, I'm sure they're working on stuff to make the peer review better on the margins over time. But I would think we should think through other options and see how they compare relative to peer review. 

 

Like I said, it's good to be conservative with taxpayer dollars, but at the same time, we haven't had innovations in these certain fields for twenty, thirty or forty years. So, like, my taxpayer dollars are helping someone in 2050, 2060, 2070, right? I think a lot of people would say no, actually, I need you to help me and my family now. I need these things to happen in the next few years. So, trying to find different options to do that would be valuable. Anyway, that's the kind of stuff that I think about. 

 

Shiv: Yeah, it's super important and very relevant. We've just spent the last thirty minutes discussing the important role the Cohen Foundation has had to vastly accelerate these fields and it'd be amazing if the $40 billion that NIH spends every year could similarly be earmarked for super innovative field advancement, as you guys have done. So, hopefully, some of our listeners who decide to go into research careers may find themselves at these governmental agencies or academic labs or private foundations and will take that to heart and can collectively help change things.  

 

As a last question, if our audience is interested in connecting and learning more about the Cohen Foundation or you, where should they go to learn about it?

 

Ben: Our website is probably easiest www.steveandalex.org. 

 

Shiv: Well, with that, Ben, I'd really like to thank you for taking the time to be with us on the podcast, but more importantly for the work that you have done over the past several decades across global health and now with the Cohen Foundation to accelerate work in psychedelics and tick-borne illnesses among other areas. 

 

Ben: Well, hey, thank you so much. I appreciate you giving us the time. 

 

Shiv: Totally. And with that, I'm Shiv Gaglani. Thank you to our audience for checking out today's show and remember to do your part to raise the line and strengthen the healthcare system. We’re all in this together. Take care.