Continue learning with Dr. Burt and be inspired to question dogmas (Ep. 97)

Warrior: Dr. Richard K. Burt
AI: halter
HSCT: pioneer
Superpowers: vast knowledge, being patient-centric, caring for improvement in quality of life, facilitating clarity through education, and fortitude in human spirit

With gratitude for the additional time to connect with Dr. Richard Burt and celebrate the recent publication of his latest book, Everyday Miracles: Curing multiple sclerosis, scleroderma, and autoimmune diseases by hematopoietic stem cell transplant, we’re sharing the following verbatim transcript of this conversation, the second of two episodes featuring Dr. Burt.

Zen Jen: Good morning, Dr. Burt. It’s so great to connect with you again. 

Dr. Richard Burt: Good morning. 

Zen Jen: How are you doing? 

Dr. Richard Burt: I’m doing good. Thank you. 

Zen Jen: So last we spoke, I wanted to squeeze in some questions and I appreciate how much you’ve shared already about the book, and your intentions. And, some part of the book that I know so many people have questions about, or at least those who are desperate to get to HSCT, might be curious to know more about why you’re saying HSCT is not as effective for primary progressive MS or even non-active secondary progressive MS.

Dr. Richard Burt: Well, that’s because HSCT, despite its name, hematopoietic stem cell, that is stem cell transplant. It is not a tissue neuro regenerative therapy. 

Zen Jen: Mm-hmm. 

Dr. Richard Burt: It is an immune [00:01:00] reset therapy. So, once MS transitions from an immune mediated inflammatory disease into a neurodegenerative disorder, which is what non-active secondary progressive MS is, uh, this therapy is too late to help it. 

Now, primary progressive MS, I think upfront is a different disease than relapsing-remitting MS. Obviously, it s clinical course is different, but uh, it just happens to be called the same thing. Multiple sclerosis. I think primary progressive MS is really a predominantly neurodegenerative disease from onset, whereas relapsing-remitting MS, it’s not. It’s a immune-mediated inflammatory disorder that results, as time goes on with accumulation of, of plaques and demyelination in a neurodegenerative [00:02:00] disease. And the reason it results in that is that the neurons are incredibly specialized cells and some of them will have a, an axon or a body that goes from the cell nucleus in the brain all the way down to the lumbar sacral region in the spinal cord. 

And when you think a very, very small microscopic cell can do that, that’s an astronomical distance that it travels. And in return for its very specialized functions, uh, that give us cognition and, uh, you know, control of motor function and a lot of other functions in our body, it needs, it sacrifices certain other attributes that cells have, and it needs the support and nourishment of other cells, including uh, oligodendrocytes that form the myelin around these axons. And so, uh, once those are damaged, you can start setting your neurons up if they’re [00:03:00] damaged significantly enough for an accelerated, uh, neurodegenerative process.

And so, you know, that’s where you end up with late non-active secondary progressive MS. But my concern is that, uh, primary progressive from onset is a different disease. That it’s, uh, predominantly neurodegenerative and an immune-based therapy, which is really what HSCT is, that is resetting your immune system back towards tolerance to, uh, to myelin epitopes, would no longer be effective.

And so why put a person through the risk? Of this treatment, if, if it’s not gonna help ’em. You know, if there was absolutely zero risk or inconvenience from this therapy, you know, that you could maybe argue differently until you’ve collected enough data to publish and confirm it’s, whether it has any effectiveness or none at all. 

Zen Jen: sure. 

Dr. Richard Burt: In primary progressive MS, but it, it, this there carries a low but real risk of [00:04:00] mortality with, uh, HSCT. Depending on the regimen you use, it’s higher with myeloblative toxicity, mortality, but even with non myeloblative, you can never make that risk zero. And so that’s why, you know all ,what all medications, all treatments, all surgeries have early and late complications. Um, you know, so you, you always have to weigh risk benefit and, um, you, you know, I personally would be uncomfortable with that risk when I strongly believe there’d be no benefit. And I think the converse could be said that, you know, it could be easy to argue that people that do that are either being kind of naive, or that there then would be taking advantage of patients for their money without being able to help ’em. So I think pretty much anybody that has experience doing H SCT for uh, MS will not do primary progressive or late secondary progressive [00:05:00] MS. In the early days we did before people figured that out. So, um, you know, I, I figured that out very early.

My very first paper of 10 patients, I put in the title “failure” for late secondary progressive MS ’cause I wanted people to understand that. And in the early days, you know, you had to start there. Uh, you know, we were, I had animal data that it worked in relapsing-remitting, EAE an animal model for ms, but not in chronic EAE, which is like, secondary progressive MS, but nevertheless, ’cause nobody had ever done this in terms of risk benefit,

Zen Jen: Mmm. 

Dr. Richard Burt: You know, we were restricted to starting the secondary progressive and that really followed the animal model. You know, it just doesn’t benefit those patients. Um, I mean, you know, there’s a subset if their EDSS is less than six that didn’t show further progression, of the EDSS over several years, and you could argue maybe it stabilized them, but I, um, that would require a gigantic study. And, uh, 

Zen Jen: absolutely

Dr. Richard Burt: it just didn’t interest me. And, and [00:06:00] those over six, many of them continued to progress after the procedure. So it’s, you know, MS, even relapsing-remitting, I think, is a little heterogeneous. Obviously, it’s clinically heterogeneous. Some people have very explosive disease, others very mild, uh, you know, where they have very few attacks during their life.

Uh, some, you know, have multiple lesions on MRI despite limited disability. Of course, that depends where the lesions are, but you can be surprised by that. Others have not so many lesions and a lot of disabilities. So, even relapsing- remitting, is a spectrum of, uh, or variations, at least, uh, in its clinical presentation.

Whether they’re variations in the underlying pathophysiology isn’t clear, but there, I think as time goes on and more research has done, these will eventually be better clarified. For instance, it used to be considered that neuromyelitis optica also called Devic’s was just a type of MS [00:07:00] and it does cause demyelination.

And when it first starts, it’s predominantly in the spinal cord and in the optic nerves, uh, with sparing of the brain, which makes it a little bit unusual for, uh, MS. Although MS involves the optic nerves and the spinal cord, but the lesions in neuromyelitis optica tended to be confluent over at least three vertebra.

That is, they follow the length of the spinal cord for at least three vertebra, whereas MS tends to, when it has a lesion confined to the length of one vertebra, if it becomes confluent, it can look like it’s three vertebra. But you know, the initial attacks are just the length of one vertebra. And, uh, neuromyelitis optica initially didn’t show lesions in the brain, but as time goes on, you often do get lesions in the brain. Um, and so it used to just be considered a type of MS that would present more with, uh, spinal lesions and optic neuritis. In fact, the way it was first described was about, I think it was 1894 French physician, Devic, for which it got the name.

 [00:08:00] Eugene Devic was his name. Neuromyelitis optica had a patient come to him with first attack and uh, within a month had died. And an autopsy showed extensive involvement of the spinal cord and, and optic nerves. But the brain was normal. And so, you know, he wrote it up as neuromyelitis optica, uh, and um, you know, his name Devic got associated with that.

And then for a hundred years people argued that it is just a type of MS and was considered MS. But over time that’s been teased out because an antibody to astrocytes, not to to oligodendrocytes, not to neurons, but to astrocytes, uh, was found to cause the disease. And that’s an antibody to Aquaporin-4, uh, whereas you don’t see those in MS at all.

So, it’s a, it’s a much rarer disease than MS. MS is about one in a thousand, uh, in people of [00:09:00] European heritage, but MS is relatively common in, in the Middle East too I’ve, I’ve learned, uh, but the, uh, neuromyelitis optics is about one in a hundred thousand. So it’s, it’s, it’s less common, but, uh, and it does respond to transplant, but we have to use a different regimen than we use for MS.

So, you know, going back to your question, I think that primary progressive is a different, uh, disease than ms. It just happens to be called primary progressive MS. Uh, and so that’s, and I don’t think a stem, a immune-based or immune regenerative therapy would be beneficial. If someone ever proved me wrong, that would be great,

Zen Jen: Right. 

Dr. Richard Burt: but, but I don’t think that would be the case, and I don’t want to put patients through the risk of this therapy if I can’t help them. 

Zen Jen: Sure. No, and I so appreciate you taking the chance on me as I transitioned to secondary progressive [00:10:00] between my first evaluation and insurance approved me and then changed their mind. And so then six months later I thought, well, let’s go again for an evaluation to just help make the proof that I’m getting worse and I need this as a medical necessity, right? That it’s, I need this more than ever. And sure enough, six months later, I did not have active lesions and we were, you were afraid that I was transitioning to secondary progressive and that within a year, this may not help me and I’m just beyond grateful that you took the chance that it would help, because I believe that it has. 

Dr. Richard Burt: Well, yes, I think we can still help people with active secondary progressive, that has new lesions or an active enhancing lesion within the last year. But obviously once you get to non-active, secondary progressive illness, then I, I don’t, I wouldn’t offer the therapy. Ideally, of course, you want to get people before they get there. 

Zen Jen: Yes. 

Dr. Richard Burt: Uh, obviously we have to fight with the insurance companies to get this to happen. And in your case, there was that long delay bef, you know, to, [00:11:00] work that process through. Uh, and I’ll leave that up to you if you want to tell your readers, but, um, you know, it’s, um, one of those things you have to do that’s different than what most doctors do. So when we, you know, most doctors don’t write and submit, and take the time 

Zen Jen: no, 

Dr. Richard Burt: for, for their submitting to insurance companies, and then going through all the appeal processes. And it’s quite a bit of time and effort for which there’s never any reimbursement, but you do it because you want to try to get the best therapy for your patients and, you know, it can, uh, be a time consuming, uh, process, uh, almost at times like writing a grant. And that, 

Zen Jen: indeed, 

Dr. Richard Burt: you know, the result is, uh, whether the, you know, the funding shows up, is never in your hands, but it’s the process we have. And so, you know, we work with it to try to get the best we can for the patient.

Zen Jen: And so, going back to what you just [00:12:00] mentioned about the antibodies related to NMO, neuromyelitis optica. I’m just beyond impressed, continually impressed, with how much you know as an immunologist by training about these neurological conditions, and I’m grateful for your dedication to that research. So, if we think about the latest research out of Harvard, that Epstein Barr virus can cause, or trigger the body to develop multiple sclerosis, what do we know now, about Epstein Barr, as it relates to the antibodies. You mentioned this briefly in your book, right, that some of the more harsh regimens or myeloblative regimens can trigger that Epstein Barr virus antibody reactivation, and I know that that was the case for the first patient treated on the Beat-MS trial at Cleveland Clinic. That there were a few weeks there, that the fever was super high and the antibody levels were 500 times what they should have been. [00:13:00] Maybe talk a little bit about those risks with myeloablative and why reactivation of Epstein Barr can be such a challenge. 

Dr. Richard Burt: Well, you know, there’ve, there have been intermittent reports through the decades of different viruses, uh, being triggers for MS and they kind of, um, have their period of interest, then it kind of falls off, uh, and then recurs later with a different virus or, uh, re-interest in a particular virus. They’re, they’re often herpes related viruses, and Epstein Barr, who is within the herpes family, but other, there’s also been this concern with other herpes viruses. Um, and that’s not been my, you know, there’s no definitive answer to the involvement of virus in, in MS and that’s been not been my particular area of research.

I did do research an animal model of Theiler’s Murine Encephalomyelitis virus, which causes a disease that mimics MS. It actually mimics primary progressive MS, not [00:14:00] relapsing-remitting in an animal model. And, uh, um, you know, that attacking the virus in the central nervous system and the inflammation of the response to that attack causes a presentation of some myelin proteins to the immune system in an inflammatory state, and so that can activate, that can remove tolerance and activate the immune system against myelin proteins. And that, once activated against one myelin protein and the attack starts on that protein, it can spread to other myelin proteins, and that’s called epitope spreading. So, yeah, viruses have a potential kind of a, a bystander potential by activating the immune system to, if there’s damage to other tissue within the area, to activate the immune system to, to self peptides. Uh, it’s one of the things like when we would cause MS in animal models, you know, [00:15:00] we could use a virus -TMEV -that would cause a disease, looks like primary progressive MS, or we could, uh, use just myelin peptides by themselves. But if you inject those peptides, absolutely nothing happens. If you inject them with an adjuvant, that is something that stimulates the immune system, you could trigger the immune system to cross over and attack myelin and start a disease called EAE that mimics MS and that adjuvant that you use could be complete Freund’s adjuvant, which is, you know, kind of dead mycobacterium.

Or it could be , any of the normal vaccines that people are giving, measles, mumps, rubella, tetanus, they would all activate the immune system and could lead, if there’s, uh, myelin peptides, co-injected with it, then to the development of MS. So, it doesn’t surprise me at all that viruses could play a role, but the definitive role of a given [00:16:00] virus for MS, I don’t think has been absolutely clarified. 

Coxsackie for, uh, type one diabetes is probably a better example and that one’s more closely, um, associated with onset of Type I diabetes in, in children. So, you know, it’s kind of understanding how the immune system responds to self peptides. And, it used to be in the old days, thought that during development of your immune cells from the hematopoietic stem cell would have to start differentiating towards different immune cells.

But saying the development of T cells, the way it makes a T-cell receptor, is it, randomly rearranges these different genes and comes up, it can develop millions and millions of different receptors on the T-cell. The problem is that random rearrangement in the development of the T-cell will develop receptors that recognize self epitopes or self tissue [00:17:00] or self antigen, and it used to be thought in the development of the T cell receptor, if it bound self, it would die. So these self reactive T-cells don’t get in the periphery. That’s only partially true. It’s then subsequently realized that it has to bind self to get into the periphery, but it has to bind self in a weak to moderate manner. If it binds it more intensely, it still survives, but becomes a T- regulatory cell to down-regulate immune response.

If it binds it super strong, it dies and may, right, probably good that it does, so it isn’t too auto-reactive, but your T-cells are all potentially auto-reactive, but they’re allergic to self. But that means they have the potential, given the right co-stimulatory signals and the right inflammatory environment to cross react if the epitope is there to self.

In fact, that’s really the reverse of that, is how transplant works. If you knock down your immune cells, get rid of [00:18:00] enough of the self reactive ones and stop the inflammatory process, the regeneration of your immune cells will default towards tolerance, uh, with uh, T- regulatory cells that help maintain that tolerance.

And, uh, I’m sure with time, that will be elucidated even further. You know how that mechanism actually works, but that’s really, how this works. It’s kind of the reverse of immunization. It’s just quieting down your immune system, getting rid of a significant number of auto-reactive cells and allowing the regeneration of cells that have the potential to react to self, but do so in a non-inflammatory environment.

And that resets tolerance, uh, including the development of the T-reg cells that have a higher avidity for self epitopes, but, but help maintain tolerance. And I think one of the advances further in, than transplant for autoimmune diseases would be [00:19:00] to see if there’s something you can do to the, uh, regenerating immune system to help push the production of more T-reg cells, or that is more, uh, uh, cells that help maintain remission, uh, and help shut down any potentially activated, uh, cell once it becomes activated towards self.

But, um, that’s kind of a theoretical future. There are people that work on T-reg cells for that reason. And I mentioned that in my academic textbook, uh, which came out in November, 2021. We have a really great chapter on T-reg cells by a professor in London, uh, and their potential role, you know, uh, so, and there are limitations currently, there’s still a lot to be learned. Um, so, um, going back to your question, though, the intensity of the regimen does determine reactivation and risks of viruses subsequently, uh, [00:20:00] and, you know, Epstein Barr virus has never really been a concern for us when using a non-myeloablative regimen. But you can use non-myeloablative regimens that are just as intense or even more intense on removing your immune system than a myeloblative one.

And actually there are people who use a non-myeloablative regimen of Cytoxin, ATG, but they increase the dose of ATG to around 7.5 milligrams per kilogram. And once you call above 6.5 milligrams per kilogram with ATG, you start running into the risk of reactivation and disease associated with Epstein Barr virus that you don’t see when you keep the dose around, you know, you cap the dose at six. 

Um, it’s… the other thing they do is CD 34 select, which you know, is purifying the graft and may also contribute a little bit to that. But those are the two reasons why, you know, when you, you have, when you look at the treatment for MS, there are all these different drugs, disease [00:21:00] modifying therapies, and people know natalizumab is different than Lemtrada that’s different than Copaxone in terms of efficacy and toxicity. For, for instance, natalizumab, uh, is the biggest risk for the virus, progressive multifocal leuko that causes progressive multifocal leukoencephalopathy. That is the JC virus. Other drugs have a very low risk that it has been rarely associated with Ocrevus or Gilenya, but it’s very rare developing that disease.

Unlike Natalizumab, uh, it’s really unheard of when you use Copaxone or Interferon. So, it’s the same with conditioning regimens, and unfortunately when people think of transplant, they think of just this monolithic block called transplant. But no, it depends entirely on your conditioning regimen. And the first way you can break that conditioning regimen down is whether it’s myeloblative or non-myeloablative.

But then even within that subset, there’s different levels of risk and risk of viral reactivation. And certainly when you use a very intense regimen or even a [00:22:00] non-myeloablative with ATG dose over 6.5, you uh, run the risk of, uh, of reactivating Epstein Barr virus and having uh, complications associated with that, including, um, uh, PTLD post-transplant, lymphoproliferative disorder.

So, um, yeah, the, regimens can absolutely be associated with different risks of toxicity and, uh, virus related infections. 

Zen Jen: thank you 

Dr. Richard Burt: and, it’s one of the reasons I’ve always argued for the safer non-myeloablative. But within the non-myeloablative, I’ve argued to the community to cut that ATG dose back to less than 6.5 and that CD 34 selection is not necessary.

And I think that message finally starting to resonate with those who have used the higher Cytoxin ATG regimen. And they are, I think, in the process of, uh, reducing that. [00:23:00] 

Zen Jen: Wonderful. So do you think that virus might be a factor in triggering relapses for people who have been through HSCT? 

Yeah, I don’t have an answer to that and I haven’t personally seen that in patients. Uh, fortunately the majority don’t relapse. But in those that have relapsed, I haven’t noticed an antecedent viral infection as the precipitating cause. 

Zen Jen: Well, that’s good to know. I’m just always curious. I think a lot of people are curious how that relapse might occur and understanding might help resolve some of the anxiety around even at five years post-transplant. I still, if I get sick, right, I’m thinking, oh my gosh. Is my MS coming back? Have I relapsed? 

Dr. Richard Burt: Well, it is clear when you have an infection that you can get a pseudo-flare, a recurrence of the symptoms, but it’s not associated with recurrence of MS. And as the infection goes away, the pseudo-flare [00:24:00] resolves. There’s no new lesions or activity on MRI and you continue to do well.

But you know, once the central nervous system has been damaged, it’s more prone to re-manifesting those symptoms when you’re under stress, whether, especially with an infection, but also even, you know, intense uh, stress from employment or marital stress or whatever, inner-relationship stress. Uh, and that’s, that happens with other types of damage to the central nervous system. Even if you talk to patients who’ve had, uh, slipped disc with pressure on, uh, the nerves coming off the spinal cord and then finally go to surgery and they get relief, you know, it’s not unusual with stressful situations for that back pain to act back up just like a slipped disc. And you know, they have to go to bedrest and stuff and when the stressful situation resolves, uh, they go back to where they were, uh, you know, before without that type of, uh, [00:25:00] radicular pain from a, from the prior herniated disc. So, the central nervous system, once damaged, no matter where it is, can, is, is prone to, under, uh, different types of stress or infections to re-manifest those similar symptoms that do resolve once the, the uh, stressor or infection resolves.

Zen Jen: Thank you for clarifying. I hope that brings some peace of mind to our listeners and, so, many of the people I interview, I like to ask a question. About a superpower that they’ve gained through their experience with HSCT. So, some people point to increased patience or resilience, tenacity, increased sense of empathy.

All of those things seem to already be part of who you are, but I would love to ask you, if there’s a superpower you’ve gained in your experience with [00:26:00] HSCT.

Dr. Richard Burt: (laughing)That’s great. I wish that was true. If it was true, many more doctors would be doing this. It’s more like hitting the UFC ring and getting pounded on uh, despite doing a lot of good and, and, uh, you know, it takes a lot of perseverance and, and, uh, 

Zen Jen: yeah, it does, 

Dr. Richard Burt: you know, you do get fatigued from, uh, working that hard and dealing with, uh, all the uh, misinformation that occurs out there. What I have learned is that, you know, I mean, I’m obviously a professor and I love learning and uh, teaching, but, um, and information is valuable, but limited information is very dangerous. Uh, ‘cause people take that and they twist it in ways and it really is unfortunate.

And so you get limited information‘cause you are not doing the work yourself. That’s where you get the most information. By designing the protocol, studying the disease, and doing the treatment and sitting at the bedside 24/7. [00:27:00] Then you live it, then you know, and when you do that, and then you see how other people, you know, no matter who they are, including doctors, get up and talk about it, who don’t actually live it or don’t even necessarily do it, you’re like, whoa, you know, no wonder things are so confused out there.

Uh, so, you know, part of the process is trying to educate people about how this works and the risk benefits and, and so forth. But, um, um, there is developed just tremendous misinformation out there that’s kind of destructive. You know, ’cause people often, the first thing they hear, they tend to latch to it and stay to it is hard to, it’s kind of that first effect and it’s hard to get people to open their minds to rethink it.

So, um, it’s maybe one of the things that have hindered the development in this field. People are taught in a particular way, and so, you know, once they hear the word HSCT, they, [00:28:00] they don’t really understand what it’s about, but yet they’ll convey a lot of information and they’ll have different degrees behind their names to do that, which would imply they’re an expert.

But no, they’re not. They actually didn’t develop it. They don’t sit at the bedside. They’re not taking care of those patients and they’re in, and they can then, unintentionally, uh, cause the distribution of a lot of misinformation. And so, you know, you get tired of that, you get exhausted seeing that over and over.

Uh, and in fact, I’ve kind of decided, you know, after all my publications, and my major medical textbook last year, and this lay book, you know, if this doesn’t help change things in this country to make it more accessible for patients. Then, uh, then I’ve probably done all I can do. 

Zen Jen: Mm-hmm. 

Dr. Richard Burt: you know, the, the system is kind of this gigantic bureaucratic structure that marches forward on its own and the patient’s [00:29:00] gotten lost in that structure. Uh, you know, the system is developed for the patient, but it’s not patient-centric anymore. And what you need are physicians that are patient-centric and that patient is first. And I bring that out in the last chapter, uh, especially in the last chapter where I talk about, uh, financial toxicity.

So, you know, hopefully this will, but that’s gonna require some subtle changes in the medical system itself, which is kind of beyond my authority to do. It’s more of a societal thing and legislative thing. And so in a kind of a redirection of, uh, how doctors are trained and think, uh, because it is, patients would say to me, why don’t people stand on rooftops screaming about this?

And, uh, you know, I didn’t really have a good answer for that. I, kind of didn’t understand that myself and from being in the, in the ring all this time and, you know, you kind of get tired of knowing what you’re doing [00:30:00] is the right thing, but getting beat on. So, um, it, it is actually surprising to see these kind of responses in this disease and yet a failure of the community, including the academic community, to embrace it.

Uh, so, you know, I bring out in the last part of the book, the last chapter, what, you know, Why I Can’t Get HSCT, and uh, it’s not critical of any one person. I don’t believe in any way that any one person or entity is intentionally trying to harm a patient. I think it’s quite the opposite. I just think it’s limited information and set ways of thinking.

And then as the, the way the structure feeds on itself our medical healthcare system and it, you know, needs to be reemphasized and tweaked to make it patient-centric, uh, instead of just expanding itself. Uh, so hopefully, you know, there’s several levels to this book, Everyday Miracles, and I, I hope you know, that [00:31:00] people understand those different levels.

One of the levels is just understanding these diseases, which, another level is the patients and their tremendous courage, and fortitude in human spirit to persist and survive. Uh, and to try to find a way when you’re being told it’s a chronic disease and you know, basically you’re stuck with it. 

And so, there’s another level, and that is the inherent problems that have occurred within our medical system that need to be tweaked to make our medical system advanced, accountable, affordable, and all-inclusive. And you know, medicine is a profession, but healthcare’s a business and that’s where conflicts can arise.

And you really do need an independent physician who’s not an employee of a hospital or an institution, to represent you through that healthcare business. Not just in terms of medical, which they currently do, but in terms of financial. And uh, um, you know, that is [00:32:00] not being done. Doctors have absolutely no clue about charges to patients. Uh, and, um, at the end of the year, they’re given a bonus if they exceed their expected billing. And if they don’t, you know, they get penalized by, you know, uh, various psychological pressures or taboos or, you know, kind of almost like putting a scarlet letter around their neck and, uh, then less, you know, revenue for the next year.

And, you know, that shouldn’t be. It should be focusing on doing the best for your patient. And if, uh, you know, you’re not concerned about the financial health of your patient. If there’s financial insecurity, whether it’s for the patient or the society, the medical and psychological health of your patient will also suffer.

So, you know, obviously if you take a chronic disease, it’s being treated with these extremely expensive drugs. And I point out the cost of the drugs when they’re first approved by the FDA and their current cost in 2020. And its astronomical shift going from the original [00:33:00] copaxone, interferons that are about nine to twelve thousand a year to, you know, a hundred thousand dollars a year.

That’s matching the development of the new drugs. They’re all running kind of the same price. So, a transplant using the regimen I do, non-myeloablative, would be paid off after one year and then you’re free the drugs and it’s done something the drugs haven’t done. It’s reversed neurologic disability by one to two points and uh, it’s improved quality of life and the majority, 75% have remained free of recurrence of MS. Uh, not just relapses, but progression. So you know that, you would think would be welcomed in the community. 

Zen Jen: Mm-hmm. 

Dr. Richard Burt: But it’s, it kind of hasn’t been, and it’s kind of been a, a fight to get the community to understand that. And that includes some patient support groups the, traditional ones that, uh, have been lag, you know, very far behind in recognizing or supporting this. And again, I think it’s because, they’ve moved away from being patient-centric, 

Zen Jen: [00:34:00] mm-hmm 

Dr. Richard Burt: And, uh, large structures do that, yet the development of those structures was originally to help the patient in front of [th]em. And often the larger the structure, the more money involved, the more uh, they become self invested in continuing their cycle and that, the patient kind of gets lost.

So you need a physician that’s patient centric and they can’t be if they’re an employee of a hospital or whatever, ‘cause they have their own different structure and interests to allow those gears to expand. And they, they live off the revenue brought in by that patient care. So, you need a doctor that can fight that without risk of losing their or suffering some disadvantage for standing up for the patient.

And, um, uh, you know, it’s kind of like if you’re, need a lawyer, but the lawyer works for the judge, or works for the district attorney that’s prosecuting you. You’re not gonna get the best lawyer ’cause he’s compromised. And it’s the [00:35:00] same this way. You need to, to have doctors that are not employed by hospitals or large organizations whose primary focus is you, because they have the knowledge, but they’re, they’re totally excluded from understanding charges and billing. And part of that requires then, that uh, medical journals, you know, they normally will publish phase one, phase two, phase three, phase three being a randomized trial, but they don’t publish cost effectiveness. There’s never a phase four. What’s the cost effectiveness of this?

That is the cost for this and the benefits versus other types of therapies. So people don’t know. They’re unaware. And I bring it out in Neuromyelitis Optica. I bring it out in, uh, in uh, MS as well in those chapters. But for example, neuromyelitis optica in 2019, the first drug was FDA approved for neuromyelitis optica.

It’s Eculizumab, it costs three quarter of a million dollars a year and you have to stay on it forever ’cause it doesn’t get rid of the, or effect in any way, the antibody that causes the disease, the Aquaporin-4 antibody, [00:36:00] what it does is block activation of complement by that antibody, it’s the compliment that destroys the cells and causes the attacks, but you can still get attacks. They’re just less frequent. 

Uh, but you kind of just stay on it forever. Whereas the transplant I showed, although it was a small number of patients, you know, phase kind of one study, we did show that the majority, 80% became negative for the antibody. And if they became negative for the antibody, they hadn’t relapsed over five years and the patients I reported in Neuromyelitis Optica were beyond 10 years without a relapse or any treatment. So if you, the transplant, the regimens have to be specific for each disease. The regimen for neuromyelitis optica is different for MS, it’s a little more expensive, 125,000, but you know, you could do five transplant in one year for the cost of one year of neuromyelitis optica, but nobody’s aware of it.

Zen Jen: Mm-hmm. 

Dr. Richard Burt: And it’s really been you, whether it’s the insurance company or the government paying for it, it’s still the society as a whole and it’s not sustainable, and I call [00:37:00] that financial toxicity. And it’s not unique to neurology. I’ve seen it repeatedly throughout all fields of medicine. And it’s because doctors have absolutely no training in cost effectiveness or the cost for their patients.

And especially when they’re employees, they don’t even know what those books show. Uh, they’re just pushed to, to increase RVUs, which is revenue built. So, you know, which is functioning to support the system over the patient. And that’s why I try to bring out, we need to become more patient-centric. And that’s where medicine really started.

But that’s gonna require some societal changes in the structure of medicine that go beyond me. And so those, there’s several levels to this book that I wrote and you, you know, may have to read it a few times to pick up on those different levels, but of course one of the obvious ones is here’s patients that are just continuing to get worse on these drugs. A system that is fought against them independently on their own, they came for transplant and they’ve gotten so [00:38:00] much better, doing well, uh, without any drugs, for now very long periods of time and some of the patients I just randomly contacted 20, 15, 10 years out, still in remission doing well. 

So again, there’s no definition of cures for these diseases ’cause nobody’s ever had the luxury to define that.

But, uh, um, it does change the natural history of the disease, and if there is a definition of cure, perhaps the best would be in those few for which we have antibodies such as NMO. Uh, in transplant it’s the only thing that’s ever shown a disappearance of those antibodies, uh, as a caveat, you also have to check for the ability of those antibodies to kill cells uh, that is actively a compliment, but you know, that gets into detail it’s not necessary here. 

Actually in MS if there is a pseudo, uh, a, diagnostic marker for disease, and I’m not sure it is, I’m not sure at all that it is, but you could maybe make an argument that it’s the oligoclonal blands and the CSF fluid and, um, the people in [00:39:00] Sweden who were part of my mistrial actually did add a little extension to it where they.

Would do follow up lumbar punctures to look at those oligoclonal bands. And they found that by about eight years after transplant, you know, the patients go into remission, stay in remission, but they still have those oligoclonal bands. And then about eight years after transplant, they totally disappear. 

Zen Jen: Wow.

Dr. Richard Burt: So you know, there can be a delay for them, to go away, but they went away. So, you know, they did publish that, but it’s kind of, you know, a lot of people don’t recognize or know that, in fact, I didn’t even put it in my lay book because then it, it would talk about, I would require to talk a little more about the basic immunology of things, which, uh, you know, I, I didn’t want to go into, I wanted this to be a book that’s uh, understood by the lay public. 

Zen Jen: Sure. 

Dr. Richard Burt: And that they would enjoy reading more of a kind of humanities type of book. And in fact, I enjoyed writing it that way. It took me back to my college days because I’ve been so tied up having to write [00:40:00] in a medical [form] 

Zen Jen: medical publications. 

Dr. Richard Burt: Yeah, right. Which it’s important to write ’em that way, but you know, they’re loaded with statistical analysis, and they can put you to sleep if you’re not really into understanding and, and doing that. So, um, you know, I wanted to get this out to the lay public and, and write it from, you know, patient’s perspective as well as how this field was developed by me. Um, and, uh, you know, which is another level to this book. 

So, hopefully the key is that people read this, I think it will have an impact, but people need to read it. You know, unfortunately, I don’t have the name of a famous, uh, movie star or politician, which people would then want to read, but, you know, they don’t have the knowledge or expertise to, to develop something like this or to do it.

But, you know, all I can do is get the information out there and then let the cards fall the way they will. But, the purpose of this lay book is to empower the [00:41:00] patient and their family and their loved ones. Um, you know, and then they can go to their neurologist, say, see, read this. A neurologist [could] say, oh, well this is science fiction.

But then they can hand them my medical textbook that came out a year ago, or, or my website that I set up. So this information is disseminated to patients, uh, so patients can, can have access to that as well as, as physicians, you know, because it’s almost ludicrous that you can have a, a therapy like this that can have such tremendous benefit. And yet it is so hard to even be made aware of it or to access it. 

Zen Jen: It is ludicrous, indeed. 

Dr. Richard Burt: Some people have just said awful things about this that are completely wrong and, um, you know, you, you just have to kind of wonder. You know, I think whether there’s other agendas that they have or just, uh, limited information. [00:42:00] And so that’s, that’s the goal here is to, you know, think that people’s intentions are generally good, but the information’s limited. And that’s, you know, one of the reasons I wanted to get this lay book out, as well as the medical textbook. And hopefully those will do more than all the medical publications and clinical trials have done because, you know, they, they don’t seem to have changed the field as, as they should have, or made this more accessible to patients. Then after a while, after decades, I, I get tired of being in the UFC ring. 

Zen Jen: Yeah. 

Dr. Richard Burt: So it’s not, it’s not a superpower, it’s an exhaustion. I wish it was a superpower. 

Zen Jen: Oh, I heard so many superpowers embedded in your response, right? So, I mean, just your vast knowledge in general is a superpower. Being patient-centric and really caring about that improvement in quality of life. To have that as a focus is clearly unique in the field of [00:43:00] medicine, which is unfortunate, and ludicrous. Um, facilitating clarity through education, I mean, you’ve been devoted to that it seems your whole life, if not career.

But I think when you identified the patients evidencing fortitude in human spirit, I’d say, if I could declare you having a superpower, that would be it, I think, although you see it in your patients, I see it in you and 

Dr. Richard Burt: well, thank you very much. 

Zen Jen: I’m beyond grateful for that. I just truly, am so grateful for you and, and your dedication to this research and to your patients and being at our bedsides because I, I know that that’s true. And if anyone were to ever doubt that, I just can’t imagine, uh, why? I vividly remember even a conversation that we had on a Sunday morning, where you walked in and I was working on a laptop and you said, oh, are you scrolling Facebook? And I said, [00:44:00] no, no. I’m working on a grant application. And so we bonded over the grant process, but you shared a story of growing up in Montana where my sister lives, and so I’m just, I’m ever grateful for our connection, and I hope more people can enjoy a sense of that connection. Just in reading your book, because your humanity and human spirit truly come through. It’s, it’s a genuine book and I appreciate you taking the time to make that available and accessible to patients.

Dr. Richard Burt: Well, thank you. 

Zen Jen: Thank you. I think my only other question for you, which is a way I love to end my podcast episodes, is to ask if there’s anything else you’re grateful for about your experience with HSCT, that has maybe gone unspoken. 

Dr. Richard Burt: Well, I guess the number one is, you know, when I started this, it’s just an idea in my mind that didn’t exist in reality. And [00:45:00] to, so to see it come true in reality and to change other people’s lives and to see results that I had always wished for, but you know, you don’t know until you actually do it.

That is a really great experience to have an idea change the world, to realize that what’s in the mind can actually change the structure of the world around you. 

Zen Jen: Mmmm. 

Dr. Richard Burt: Um, that is, uh, uh, something great. I remember, a friend of mine once told me he was very intelligent, uh, very well educated, but he said he felt like an ant on a leaf in a river stream, just being tossed around with no control over anything.

And I think a lot of people kind of go through life being buffeted by the external environment like that. But, if you have an idea and you can actually change that stream you’re on, with that idea, you realize, [00:46:00] wow, you know, an idea can change reality. It’s a lot of work and you pay a price to do it, but it, it can be done.

And that, that has been very rewarding then, to see how this has affected people and fundamentally changed their lives. And by changing the lives of those people, you, you changed the lives of the, of the people that they interact with. So, that’s been great. 

The other great thing is that, you know, you do run into bad people with bad intentions, but you run into plenty of good people with good intentions, and there are good people who have helped me out there, uh, and I’m, you know, very grateful for them.

And I’m finally very grateful for my family, because they paid a tremendous price in my absence for this. And so, um, you know, there are, uh, families that wouldn’t, uh, individuals that wouldn’t tolerate that, but, uh, you know, they paid that price for me to be able to do this. So, all those [00:47:00] things I am grateful for and impressed by, but whenever, I’ve realized whenever there’s a great high, there’s also great low.

Um, and it’s just something you have to deal with. It’s kind of like, you know, if you play it safe and you’re just always kind of steady, you never experience those great highs, you never get to change the world. But if you take those risks and you do that, there are also great lows. There’s kind of for reaction, there’s a, a counter reaction.

And so you really learn to be grateful for those people that are true friends or family that really always want to be there for you. So, uh, I think, you know, it’s made a life worth living and that’s what I tell students. I, I always tell ’em, I say, you know, don’t do, necessarily what other people tell you to do.

Follow your own passion ’cause it’s your life and you have one life. And at the end of the day, if you follow your [00:48:00] passion, whether you win or lose, it’s fulfilled who you are. It’s made your life worth living. And that also means to think for yourself. And I try to bring that out in the book. That’s another level to this, that education, and I’m all for it, but it, it can be, put blinders on you to think a certain way. And what, that’s not really what thinking is. Thinking means, re-thinking concepts. 

Zen Jen: Mm-hmm. 

Dr. Richard Burt: And questioning them, uh, not in a bad way, but in a good way, uh, to always trying to find, you know, the best way to do things. Or you know, how things really work or what the real truth is, not just to accept the dogma.

Unfortunately, there’s a greater tendency in our academic system that, here’s the dogma, take it and stay with it, and then you get these blinders on. No, the, you know, science is repeating the research, it’s re-searching, it’s questioning the dogma. Uh, [00:49:00] and in the old days, I think science questioned the dogma of religion.

But what science is now failing to do is question its own dogma. And, uh, you know, the, that’s what science really should be and that’s how people should be trained to think, not to be taught how they should think, but trained to think. To question dogma as it, and to, to re-question it. Not in any mean way, but in, in, in to, to retest it, you know, and by doing the, the experiments or the tests yourself is how you learn. Because as information is just shared beyond that, information is lost.

Even when I write a medical paper of the original research, there’s a lot of information there, but in writing that paper, it has to be condensed 

Zen Jen: mm-hmm. 

Dr. Richard Burt: and certain information is lost, and then when someone reads it, they lose a certain extent of the information, and on and on and on. So, you know, it’s, it’s really the importance of doing it yourself to get the best [00:50:00] understanding of what the actual real knowledge is. And I think that’s being lost. People are being just, uh, in education, spoon fed and you take it this way. No, you know, it’s important to do the research yourself, and that’s where the real knowledge lies. And in questioning the dogma and the academic community. And you’re not taught to do that anymore in, uh, in, uh, academia and, and it’s kind of losing itself that way.

Zen Jen: Such an inspiration. So much there to unpack and carry forward. I think for anyone who’s listening and seeking their own capacity to become their own self-advocate and, question and challenge and dissent from that dogma to gain a better understanding about their options for treatment. And may, may HSCT become more considered as a treatment for [00:51:00] autoimmune diseases.

Dr. Richard Burt: Okay. Well, thank you very much. 

Zen Jen: Thank you Dr. Burt. I really appreciate your time and sharing and dedication to being so patient-centric and evidencing for everyone, just your integrity and your fortitude of human spirit that, I’m, going to say is a gold standard for, for life to achieve. 

Dr. Richard Burt: Well, thank you. Thank you so much.

Zen Jen: Take good care of yourself. All the best to you in health and wellness, and a lovely retirement. Enjoy every minute of it. 

Dr. Richard Burt: Oh no, I haven’t retired. 

Zen Jen: I know you’re still, well, you retired from teaching. 

Dr. Richard Burt: Well, no, not really. I’m, you know, I’m seeing patients at Scripps and I’m also developing a new IPS technology, which is a whole ‘nother different field. So, 

Zen Jen: oh, and that’s a whole ‘nother podcast I would love to have with you 

Dr. Richard Burt: down, down the line, that would be another podcast. You’re right. 

Zen Jen: I’m, I’m, 

Dr. Richard Burt: but no patients can see me at scripts and they can still get these transplants there. [00:52:00] 

Zen Jen: Right. Not retired. Still dedicated. 

Dr. Richard Burt: Right. 

Zen Jen: grateful to you. Enjoy a tremendous rest of the day and weekend.

Dr. Richard Burt: Okay, you too. 

Zen Jen: Take good care. 

Dr. Richard Burt: Bye-bye.


Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Everyday Miracles: Curing Multiple Sclerosis, Scleroderma, and Autoimmune Diseases by Hematopoietic Stem Cell Transplant
Optimal Conditioning Regimen for Autologous Transplantation of Relapsing Remitting Multiple Sclerosis Dr. Burt’s clinical trial at Scripps Health in La Jolla, California

Learn more about Dr. Burt’s journey with HSCT and his latest book, Everyday Miracles (Ep. 96)

Warrior: Dr. Richard K. Burt
AI: Halter
HSCT: Pioneer
Superpowers: tenacity, resilience, curiosity, compassion, holistic approach

With gratitude for time to connect with Dr. Richard K. Burt and celebrate the recent publication of his latest book, Everyday Miracles: Curing multiple sclerosis, scleroderma, and autoimmune diseases by hematopoietic stem cell transplant, we’re sharing the following verbatim transcript of this conversation, the first of two featuring Dr. Burt. 

Zen Jen: So, welcome Dr. Burt. It’s such a pleasure and a joy always to connect with you, but especially to now share you with our listeners and our audience of the HSCT Warriors Podcast. Welcome.

Dr. Richard Burt: Okay. Thank you so much for having me on.

Zen Jen: For sure. I’ve been devouring your latest book, Everyday Miracles: Curing multiple sclerosis, scleroderma and autoimmune diseases by hematopoietic stem cell transplant. Mostly just because it is such a page turner and engaging to read, and in my mind, it’s why we’re here today, to help others learn the importance of the text and knowing about HSCT for autoimmune diseases so that they can consider it as an option for treatment.

Zen Jen: I’m so eager to talk with you and hear your side of the story, and even what inspired you to go down the path of figuring out how to use HSCT for autoimmune diseases.

Dr. Richard Burt: Well, thank you. Kind of let me, predate that by saying why I wrote this book. And the reason I did is, I just felt there was so much misinformation out there.

In all fields, in the medical professional field, and by the lay public. And, um, I had been working in this area for, since I had the idea 35 years ago. I’ve been publishing medical papers and giving talks and doing medical textbooks and, uh, yet there[‘s] confusion and confusion in the media as well.

Zen Jen: Mm-hmm.

Dr. Richard Burt: That, you know, it was kind of like made the message of these, these advances to be, kind of drowned out. So, I thought it was very important to write an updated medical textbook, which came out in November of 2021. It’s 686 pages that can also be bought online by Amazon, but it’s a bit more expensive cuz it’s a medical textbook, and those things do tend to run a much higher price

Zen Jen: and a compilation of so many great authors in the field.

Dr. Richard Burt: Yeah. And so that included 140, professors, associate professors from around the world. So, it was an attempt to update the medical professional and research community on, why this is being done, on the different type of stem cells, the different regulations involved, and the results, and, and indications.

And that was an attempt to help people, professional people, to better understand it and to relieve some of the confusion that’s been sewn out there. But I also wanted to empower the patients and write a lay book that, a non-professional would understand and would enjoy reading… To help them clear up a lot of the misunderstanding that [00:03:00] exists.

And, you know, that arises, you know, for many reasons. But what I found in my career is, uh, of course, uh, information and knowledge is good. But limited information and limited knowledge is dangerous. And, uh, unfortunately in our media era of five second sound bites, that by definition, is limited information.

So that’s why I wanted to, do those, uh, two textbooks as well as, take the opportunity to get 12 new publications out now, in the medical literature. You know, the publications by themselves and medical literature just weren’t informing people or changing the field. So, the one, the medical textbook was for professionals in the field.

And the, lay book is for patients to know and to understand, for them to be aware and for them to be able to make a decision that they feel is best for them. I mean, the whole idea that I, and I bring this out in my book and behind the Western foundation of law and our legal system is consent.

And, to be properly consented, you need as much information as possible. So I wanted to try to get that out to the layperson, as to how this field was developed. And, the way I did it was kind of in profiles of courage of individual patients because, you know, my patients came from everywhere, all around the world, not just within America.

Actually, most of my patients did not come from the area around where I was doing transplants. And, you know, these are people who just weren’t accepting the status quo of continued drug modifying therapy that slowed their disease but did not really reverse it. You know, they weren’t accepting that answer.

And so there was a lot of courage on those patients and determination and the [00:05:00] kind of neat thing about transplant is you do spend the, you know, three weeks with a patient, in the hospital going through the procedure so you get to know them, as, as well as when they first come to you, and during follow up.

And each patient’s story is remarkable. The hardest part for me was, you know that there’s so many patients that could have been in the book and, you know, unfortunately you do have to have a limit to the book. The publishing house wanted only 50,000 words,

Zen Jen: (laughing) right?!?

Dr. Richard Burt: I was able to get it up to 70,300 words before they put the breaks on me because, as they said, you know, people won’t read books longer than that.

So, but it, it was able to include, you know, the stories of 54 patients, and, you know, interspersed within the development of the field for five different autoimmune diseases. The, you know, one that the biggest section has to do with multiple sclerosis and the second biggest section is systemic sclerosis.

Scleroderma, because [00:06:00] I had completed, the world’s first, randomized trials in those studies showing large superiority for transplant. But, also I wanted to explain to patients that, you know, there’s a big misunderstanding out there by everybody virtually, that it’s the stem cells and the stem cells are therapeutic, and they’re not. They do not regenerate neurons or oligodendrocytes or repair myelin.

They’re just a supportive blood product. That the efficacy, and the toxicity arises from the conditioning regimen. And, efficacy also rises from patients selection predominantly. Those are the, the main things that determine the outcome of this treatment. And once you perfect that, you can have these remarkable results.

And one of the things I found in, in writing this book is, you know, I just started randomly contacting patients, some of whom, you know, had the transplant 15, 20 years ago. And, just on randomly calling people, I [00:07:00] was amazed how everybody wanted to be included and, how the people I called, were still doing very well,

Zen Jen: mm-hmm.

Dr. Richard Burt: That far out from transplant, cuz obviously we weren’t seeing ’em anymore. You know, why should they pay the expense to fly to where I am, and then go through those procedures, you know, if they got better and stay better and, and didn’t need any medications. It’s good for them to finally be free of the ball and chains or tether of the medical system.

And so just talking with them, I realized, my gosh, this is really what I want to achieve when I first had this idea over 35 years ago. And so that was very rewarding. It also made me realize that somewhere, you know, I, I need to really find the time or set aside the time to write, long-term follow up on these patients.

Because when I first, you know, developed this or, approached people about doing this, you know, the, the medical community just thought it was [00:08:00] not a good idea. And, uh, now I think with the results that have been published, they’re somewhat gradually coming to realize the efficacy of this therapy and the advantage of it.

But there’s still, I think this resistance. Oh, well they’re all gonna relapse. Which is interesting, cuz when you do drug trials, they give one to two-year follow up and that’s kind of it

Zen Jen: and, that’s enough.

Dr. Richard Burt: and you’re kind of dependent on the drug and they’re not looking at reversing neurologic disability or getting you free of the medical system.

And so, you know, a, a publication showing those long-term outcomes would be, would be terrific. Now, I put the caveat out there that, you know, I was just randomly calling people. I didn’t do systematic

Zen Jen: sure.

Dr. Richard Burt: analysis to get the exact percentages, but generally if a patient relapses, they will recontact me, and after, you know, we find that relapses after five years is very unusual. Nobody tends to recontact, with the exception of one case I had a relapse at, 10 or 11 years. But, [00:09:00] mostly if you don’t relapse within the first, three years and occasionally out to five years, tend not to relapse. And with this particular regimen I use, you know, about 75% of people, don’t seem to relapse with the follow up we have on them and, return to, to a healthy, drug free, life without evidence of any new MS activity,

Zen Jen: which is why more people need to know about.

Dr. Richard Burt: Yes, it is, and um, so I, I explained in the book why I think it’s, it’s been …what’s retarded, this field, let’s kept it from going forward. And I mean, I mean obviously, it should move forward because there’s no license, there’s no money, there’s no patent for me for developing this. Other people can do it, but they’re not doing it.

And so I kind of discussed why I think that is in the last chapter, and it’s not any type of, you [00:10:00] know, malevolence by anyone or, or group of people that have, held the field back. It’s more kind of just, a mindset or misunderstanding in the way our medical system has been set up. And so, you know, I wanna, you know, at the end of the book you can read that, it should, you know, should find that interesting.

But I break it down into risk benefit, that is the concept of risk benefit. I don’t directly mention this in the book, but you know, there’s kind of this paternalistic, uh, attitude that, the doctor can assess your risk for you or somebody, like a, ethicist or your, insurance company or somebody sitting in their office can assess it for you.

And that’s absolutely not correct. They’re not in your shoes. They don’t know what you’re suffering. They don’t feel it, you know, it’s the patient, individual patient that should always have the right to determine the risk benefit of what they’re doing, [00:11:00] provided they’re properly informed of, of all the risks.

And, not the government, not some insurance company, not some bureaucrats sitting in their office. You know, that is the foundation of Western law. It’s consent, it’s your, that’s the difference, and I bring that out in the book. The difference between a gift and stealing, is only consent.

Zen Jen: Mmm.

Dr. Richard Burt: The difference between making love and rape is consent. And the difference between a physician or a surgeon when they give a medication or do an operation, uh, the difference between them assaulting the patient and treating them medically, is consent. Consent is the key, to what, to what, we do. And that consent needs to come from the patient who receives that treatment or interacts with that system, not from some independent body, that assumes this paternalistic or colonialistic [00:12:00] attitude towards the person.

And I, you know, even bring out a story in there at the Vatican where I give a talk and they had this ethicist from a prestigious American university talk, and he was very critical of this. Got in an argument with one of my patients there. And so the patient finally said, why don’t you believe me? Why don’t you believe these publications?

And he said, well, he just doesn’t agree with the risk benefit of it.

Zen Jen: right.

Dr. Richard Burt: and I thought to myself, what the ethicist, and this is a quote ethicist. What he’s missing is the concept of consent. That is the individual patient who is suffering this to make their own decision. Because once you’re in those shoes, things look very different than when you, your yourself, aren’t forced to walk that path and look at your life only further declining, despite all the suffering and expenses and treatment you’re getting.

So, I think you know, kind of from a societal perspective, we need to get back to this concept of [00:13:00] consent of the individual. And so that was number one, risk benefit. Number, two is kind of homelessness that, you know, I, I was not trained as a neurologist, nor a gastroenterologist or a rheumatologist, yet I developed this therapy for those diseases.

And in fact, there is, no National Institutes of Autoimmune Diseases. There are no centers around the world or around America that are, an institute of autoimmune disease that I’m aware of, and there’s certainly no federal funding for that. Unlike a National Cancer Institute or, at the NIH, or you know, cancer centers around the country funded by the NIH.

And so, autoimmune disease are orphaned off into all these different, divisions and departments and, you know, I think that’s kind of somewhat retarded the development of this field. If there were institutes autoimmune disease within which there are divisions of cellular therapy, hematopoietic stem cell transplant, as well as other cellular therapies that are being developed for [00:14:00] these diseases, I think would help, you know, accelerate, advances in the field.

Because as it would stand, you know, subspecialists that spent their career or life working in developing, thinking about a given autoimmune disease such as Scleroderma or MS, they, they don’t understand transplant, which came out of hematology and they view it as all one kind of treatment and they’re hesitant to refer their patients to it.

You know, they’re in a different fiefdom or a different silo. And, transplanters unfortunately are in, also in a different silo, which is transplanting leukemias. And so, they’re used to thinking these aggressive myeloablative of regimens. And, you know, if you make that transition like I did, where you’re in between those two silos, you can focus on safer non-myeloblative regimens and, and why that is the rationale for, for what we need to do for transplant.

So, a [00:15:00] myeloblative regimen is a cancer regimen that totally destroys the bone marrow, that makes all the cells in the blood, your immune cells, but also your red blood cells and platelets. And, of course if you can’t do that, you won’t live and you have to give those stem cells back that you collect from the patient or you’re not gonna recover.

Non- myeloablative means you target only the immune cells. You do end up suppressing the bone marrow, but it doesn’t kill it. It’ll recover on its own. You don’t have to give the stem cells. It’s just a supportive blood product that hastens your recovery. And so it’s a prudent thing to do, but it’s not necessary. And so, you can make your regimen safer, without mucositis that you get with cancer regimens, without injury, or minimal risk to other organ systems, and just focusing in on the immune compartment to knock it down then allow it to rapidly regenerate or reset with, what appears in a majority of patients, if you get the regimen right and patient selection right, can be very long-term, remissions that really change natural history of [00:16:00] these, this disease.

Now, in my medical publications and talks, I never use the word cure. Yet, in the lay book on the title, I put cure because I want to catch people’s eyes. But I put the caveat in the book that, you know, we have these very long-term remissions now, sometimes out to 20 years, 10, 15, 20 years. And the majority, with the right regimen, with the right selection of patients… that have, have gotten better, stayed better, and haven’t relapsed.

But, you know, but there is no definition for a cure for these diseases cuz nobody ever had that luxury to define it, so.

Zen Jen: Right.

Dr. Richard Burt: You know, we can’t say that. We can say it’s changed the natural history and once you’re thinking, 10, 15, 20 years with no evidence of recurrence and, and you got better and stayed better, you know, perhaps we have found the right door that, where you can start thinking in those terms, or at least apply this treatment for these diseases, that are having, you know, a, a more aggressive course. So, um,

Zen Jen: And so on that note, what do you think needs to change, in order for more physicians [00:17:00] to, as you say in your book, treat the patient from a more holistic perspective, or at least like even in medical schools, encourage the physicians to be working more transdisciplinarily, if that’s a word, to just connect outside of their subspecialties and begin understanding that these approaches to treatment have such potential.

Dr. Richard Burt: Yeah, well, you know, all physicians want the best for their patient, but they’re trained in certain ways and it’s kind of, you know, you get busy in your life, and you get down in one type of silo, and it’s, it’s hard to,

Zen Jen: It’s the way we’ve always done it.

Dr. Richard Burt: Yeah, it’s hard to see things outside of that. And so, it’s kind of a system itself. And so I bring that up in the other two things that I think are hindering this field, and, one of ’em I call eyes wide closed.

Zen Jen: Mm-hmm.

Dr. Richard Burt: And that’s where, you know, you’re trained a certain way, and I’m [00:18:00] all for education and information. I’ve spent my life involved in that, and also, constantly learning and, developing these new treatments and then learning from my patients how to perfect it and refine it from, you know, the results of how they’re doing.

But, what I was thinking I’d bring out there is like when I was in medical school and graduated from medical school and at the ceremony for the graduating class, the speaker congratulated us on our accomplishment. It was definitely a lot of hard work and, sacrifice. But, he said half of what we taught you is wrong. We just don’t know which half. And to me, that was like an eye-opener because in medical school there’s so much to learn. You just kind of force fed and you memorize, memorize, memorize. But a lot of these quote memorize facts actually, are wrong and misdirect you. And so, you know, you’re not necessarily taught to think independently.

And, [00:19:00] that’s something that you always have to kind of maintain in yourself to question and think, and that’s really what science is. Science should never be used to bully, or intimidate, or silence anyone. It should be used to question and rethink what you’re doing, and that’s where I bring out how I was taught at the NIH working in the lab, talking with the lab chief. That research is repeating the search. It’s re-searching.

Zen Jen: Mm-hmm. Right? Trying to prove that what you found is valid over, and over, and over.

Dr. Richard Burt: Right. And so part of this is, you know, minds kind of get locked in certain paths instead of rethinking. And then when you come from the outside of the field, uh, you’re then challenging the elites in that field and they’re gonna be naturally skeptical cuz you don’t have their pedigree.

So I think that’s, you know, kind of a resistance that, that you come up to. And, you know, as I said, [00:20:00] Virchow, a quote from Virchow, you know, the founder of, pathology, you know, he said a, A good doctor treats the disease, A great doctor treats the patient.

Zen Jen: Mm-hmm.

Dr. Richard Burt: and there’s a lot of truth to that. But, medicine has become so, subspecialized with so much knowledge given one area, you end up really focused in one area.

So, I think when you’re, jumping across those silos or areas, you’re given an extra high bar to, to leap over. And, and that’s kind of, I think probably one of the things that has held us back. And I think just education, is, is one of the ways to help come around that, and not just educating the medical community, but educating patients.

Zen Jen: Right. How to ask the questions.

Dr. Richard Burt: Yeah. It’s their life. It’s their disease. It’s, they are the ones suffering through this. They’re the ones asked to find the resources to deal with this. So, you know, they’re, [00:21:00] they’re the most important, who need to be informed, and that’s why I want to get this, lay book out there.

And then the final, of course, I call financial toxicity. And what that is, is that as physicians, we’re never taught the cost or price of something for the patient, whether they’re paying, or insurance is paying, or society is paying. And I think that has allowed just medical cost to far exceed inflation all the time.

And, you know, the danger with that, we should, you know, we should understand, the cost effectiveness of therapies, that is the cost of this therapy compared to another and the benefit for the patient, and make the patient you know, aware, but those publications we’re just not taught that and, unfortunately in this age, more and more physicians are just becoming employees of large institutions, hospitals, whatever.

And they’re pushed to generate, billing revenue, RVUs, and at the end of the year, they get a bonus for the more [00:22:00] they bill. Well, that’s not really what medicine should be. And, you know, if your patient doesn’t have financial security, they don’t have medical or psychological security either.

So, physicians need to be independent professionals who can protect and advise their patients through the healthcare field, because medicine is a profession, but healthcare is a business. And much like a lawyer, protects their client, and if a lawyer is an employee of the judge or the prosecuting district attorney, there’s no way, there’d be such a conflict of interest that he could protect his patient.

So, physicians need to be independent professionals, not employees, and then focus, not just, and be taught, not just the best, medical, care, but, also protecting the financial interest of their patients. Because I explained how transplant is so cost [00:23:00] effective compared to these drugs. And I actually show in the MS chapter how all these MS drugs are about a hundred thousand dollars a year and which is what a non-myeloablative transplant is, and then you become, the majority become free of drugs long-term. So, it’s a tremendous cost savings, for the patient, for society, yet it doesn’t take off. And I think one of the things that would be good is, you know, we know you need to do a phase one, phase two, phase three trial, phase three being randomized, but then it kind of stops there.

What we need to do after that is have publications and cost effectiveness comparing different, therapies that are effective for disease. Not, in any way to ever say you’d wanna give the cheapest to anyone. No, you don’t wanna do that. You want to give the best, cost- effective therapy to a patient. It’s like if you take your car into someone to fix it up, and it just needs a tune-up, and you come back and they put new tires on, they put new brakes on that you didn’t need, they put in a new hydraulic system, and in the tune-up they put in spark [00:24:00] plugs that were built in Italy for Lamborghini’s and cost an incredible amount of money, and they hand you the bill, you’re gonna say, no, I’m not paying for that.

And you know, that’s what’s going on in medicine. And in fact, you’re getting billed by physicians who have no idea what those bills are. And that is something that our system needs to tweak because as I bring out in the end, you know, how to… medicine has become so complex and so invested in itself, it’s hard to change it or hard to think about a constructive way to bring about change. In fact, you know, I bring out maybe as a society we could focus on four things that it should be, you know, advanced, affordable, accountable, and all- inclusive. I call that the four A’s. Those goals however can compete against each other.

Zen Jen: Mm-hmm.

Dr. Richard Burt: Such that if it’s all inclusive, you may not get the most advanced and best care, because no matter whether you’re dealing with the government or insurance company, there’s [00:25:00] not unlimited resources. But if we start there and then we figure out how, to achieve that. The way to achieve that is put checks and balances on each of those, and one of the checks and balances that is missing is on cost effectiveness. That is the benefit versus cost of the treatment. And if those were required to be published out there and made available to patients and physicians, and the physician was an independent entity, not pushed to bill for some big institution getting a bonus as they achieve it, or being penalized if they don’t, but focused on their patients.

And the reward is, you know, patients will spread by word of mouth if you’re doing the right thing for ’em, and then you’ll, you know, get more patients and be more successful. But if, if we incorporated that in the training, and in the publication process, if large journals like New England Journal, and JAMA, and Lancet in the medical field were forced to publish cost-effective analysis, it would, you know, I think help put a [00:26:00] check and balance on these runaway medical expenses, that are going on in the medical system.

So those are kind of the, the four things that I’ve brought out at the end of the book that I think could help change, what is holding this, this field back and you know, because, a lot of people say, well, it’s the FDA or it’s a pharmaceutical or a company or whatever. And no, it’s not really that.

It’s the structure of medicine itself that needs to be tweaked and improved, and a lot of that is, obviously beyond my ability or authority to do that. But I could bring that in the book so that other people can start thinking about it as well as, you know, one of the reasons I had to bring that out is at the end of talking about the results of these five diseases and how patients are doing, you know, one of the big questions that come to be, well, if this is true , why isn’t everybody doing this? What’s going on? So of course, you know… they could say, well, this is just science fiction. You wrote a good science fiction book. And, but that’s, [00:27:00] these are the real results. And so that’s why I had to explain that last chapter, why I think this is being held back.

And it’s certainly not anything intentional by any one group, but it’s the way our system has ended up being structured and,

Zen Jen: now broken

Dr. Richard Burt: is, is marching forward, kind of trampling over the individual patient themselves. And that needs to be tweaked, and I hope it is. My role in all of this is just to get the information out there after showing how successful this can be.

There are risks with it. Definitely are. Patients have died and I bring that out in the book. And that’s also why I argue for these non-myeloblative regimens, they’re less risky, they’re safer. And so, I’m kind of looking back at the field and where it’s going, and it’s never where… I started it, but it’s never where I wanted it to go, where NIAID’s pushing these myeloblative regimens, which are more dangerous,

Zen Jen: right.

Dr. Richard Burt: More risky, more toxic. And they’re not shown to be any better than a [00:28:00] non-myeloablative, and they don’t, the rationale, you can make a non-myeloablative even more immune suppressive than a myeloblative, so that there’s no rationale to do it.

But it’s, it’s moving forward doing that. And they’re twice as expensive as non-myeloablative transplants, and,

Zen Jen: twice as toxic it seems,

Dr. Richard Burt: and, and they’re just more potentially dangerous. So, it’s like this, this field, I’m the one arguing, you know, when I first started, people thought it was too dangerous.

Now I’m the one here saying, no. The way it’s going forward is too dangerous. This is how it should be done yet, you know, people don’t seem to listen, so I thought the best way is to inform the patients, and that was the goal of this book. So, the patients have knowledge and can help to change, what is going on in the field of medicine.

Zen Jen: Education is key.

Dr. Richard Burt: Yeah. So, and I’ve kind of come to the point, you know, I’ve done all I can do. If this doesn’t succeed in, opening eyes and changing things, I don’t know what will anymore. [00:29:00] So, but you know, that was my goal, to get a major medical textbook out and get the lay book out because doing these medical publications, giving talks to medical societies wasn’t doing it.

And there was tremendous misinformation just generated out there. Which, you know, when you actually do it and you know what’s going on, it just causes you to step back and raise your eyebrow. And that information came from every direction, misinformation, including media and, you know, physicians and, you know, sometimes, patients themselves.

So, I thought it was best to, to get this out there so people understand it and help clear up, misdirection that’s just been put out there with people who, I don’t think they mean bad, but again, limited information is dangerous because

Zen Jen: absolutely

Dr. Richard Burt: you, you come to conclusions and directions that are not correct and

Zen Jen: and that’s part of the reason I started this podcast, so that

Dr. Richard Burt: yeah,

Zen Jen: people could begin to better trust the [00:30:00] information they were finding in those Facebook groups or online, right?

It’s tough to know who’s behind that comment. And the comment is one sentence long and, and, I need to know more. And so maybe hearing people’s stories, maybe hearing people’s journeys, spoken from their own voice. Right?

Dr. Richard Burt: Right.

Zen Jen: Might help people find some sense of trust in what they’re hearing and learning and that maybe in hearing from 90 plus individuals that I’ve interviewed, and that every story is indeed unique, as you mentioned, right? That maybe we find some commonality, and maybe we find strategies to help with that self-advocacy, which is so difficult for so many people, especially when they’re stressed because they’re facing an insurance appeal, or stressed because they’re changing medicine and it doesn’t seem to be working, and stressed because they just don’t know what to do next.

So, I think your book is really going to help. [00:31:00] With all of those things, spoken from the professional standpoint that hopefully people can trust your voice.

Dr. Richard Burt: I hope it does help and, that it, you know, not just help individual patients, but helps in some way to modify this bureaucracy of medicine, to refocus it back to the patient in front of you.

Because ultimately, if you’re not helping that patient in front of you, you’re failing. And, that needs to be, to be what everything comes back to.

Zen Jen: You’re just the best doctor I know, and I appreciate you stating that so articulately and sharing so much with us, in this brief time we have together. I do want to acknowledge that we were scheduled for just a half an hour and we’re past that now.

We also have time set aside Friday that we can either [00:32:00] continue through this conversation, if you have the time now, or reconnect again Friday to tackle some of the other questions I have for you.

Dr. Richard Burt: Let’s, let’s go on Friday. So, um, people have a little, uh, time to digest what was said here,

Zen Jen: right? No, this is, this is great. I think it’s a great intro to why they need to read the book. And then I’m curious about your next steps in research and, all of that, so,

Dr. Richard Burt: Good. Well let’s take that up on Friday then. But I really, you know, everybody that’s read the book that has talked to me, has really enjoyed it and I think what makes it are the journeys of each patient.

And I wanna reemphasize, cuz I’m trained as a physician, in confidentiality never to release medical information on anybody. And you shouldn’t, if your patient’s gonna trust you, I

Zen Jen: Right.

Dr. Richard Burt: Each patient I contacted, I emphasize it’s their choice. They don’t need to do this, no obligation to me. And that I co-developed it with [00:33:00] each patient who then, had an opportunity to read what was written to make sure they’re comfortable and okay with it. And I gave, I removed all last names and gave every patient the option of a pseudo first name, or they could, if they wanted, use their real first name. And then I say at the beginning of the book that I will, you know, never confirm, deny, or add anything more to what’s in each patient’s story.

That, that is a patient story, and that is, their right to elaborate on more or to come forward, or not as however they choose. But each patient signed, written, consent and was aware of what was written and, okayed it and helped in the development of the story. So, um, I think that’s very, you know, important, to always, maintain that confidence, and trust in privacy with your patients. But that’s how I was able to do it, to get those stories out there in what’s really a profiles of courage, and that, as a matter of fact, I almost called this, [00:34:00] profiles in courage, but you know, John Kennedy wrote a book called Profiles in Courage that I had read at a young age, and so I didn’t wanna copy that title. And the title I chose, it was actually Kate, my nurse, who suggested this title cuz Everyday Miracles cuz she said a patient called her one time and she was talking to the patient and the patient said to Kate, what is, what is it like working with Dr. Burt, and before she answered the patient said, I bet it’s like watching Everyday Miracles.

Zen Jen: Mm.

Dr. Richard Burt: And so, you know, Kate told me use that as the title, and, uh, that’s what I, uh, that’s how it ended up being titled Everyday Miracles.

Zen Jen: I’m so grateful for Kate and her support of you and your work over the years and

Dr. Richard Burt: Oh, me too.

Zen Jen: Oh, she’s just been a phenomenal support.

Dr. Richard Burt: Yeah. Too many times you feel like you’re in the, uh, UFC octagon and, uh, you know, just to have some support in your corner is a, is uh, such a godsend.

Zen Jen: Well, especially for you to be so [00:35:00] isolated in everything you were doing, and to work for a decade and be submitting publications and keep getting turned down. I don’t know how you kept up and I’m so glad you did, so I appreciate

Dr. Richard Burt: Three decades.

Zen Jen: Yeah, I appreciate your persistence.

Dr. Richard Burt: All right, well thank you so much and we’ll chat again.

Zen Jen: We’ll connect again soon. Thank you so much Dr. Burt.

Dr. Richard Burt: Thank you for getting this information out.

Zen Jen: You know, HSCT Warriors, we are an education based nonprofit and the whole point is to help promote awareness that this can be considered as a treatment for autoimmune diseases. More people just need to know the facts so that they can make the best-informed decision for their care.

Dr. Richard Burt: Alright. Thank you.

Zen Jen: Take care, Dr. Burt, we’ll talk soon. Okay.

Dr. Richard Burt: Bye-Bye.

Tune in next Wednesday to hear more in a second conversation with Dr. Burt. Be sure to visit our website, where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.


Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Everyday Miracles: Curing multiple sclerosis, scleroderma, and autoimmune diseases by hematopoietic stem cell transplant (2023)