American Thought Leaders - How I Discovered a Possible Cure for My Son’s Incurable Disease | Patrick Girondi
Episode Date: November 12, 2025Why did Patrick Girondi, a successful singer and songwriter, become the founder and CEO of a pharmaceutical company?Originally from the South Side of Chicago, Girondi dropped out of high school and be...came a musician and also, quite by accident, a highly successful commodities trader.In the early 1990s, his young son Rocco was diagnosed with thalassemia, a rare blood disorder caused by a defect in the globin genes.Girondi was told by doctors that his son would not live to be a teenager.So Girondi set out to find a cure. His company has been working on developing gene therapies and treatments for rare blood disorders such as thalassemia and sickle cell disease.He’s now recruiting for clinical trials, and his son will be among the first to receive his new treatment for thalassemia in the coming months.When I sat down with Girondi to hear his life’s story, he told me: “San Rocco Therapeutics … has become involved in so many different rare diseases, because people would reach out to us. Parents, in desperation, would read about me, find my story, find me. Sometimes through friends. … Sometimes they would come to me after concerts.”There are 6,000 rare diseases in the world, also called “orphan diseases,” he says, because nobody wanted to invest in expensive research to find a cure.Girondi has released seven albums to support rare disease awareness, and he is the author of “Flight of the Rondone: High School Dropout VS Big Pharma: The Fight to Save My Son’s Life.”Views expressed in this video are opinions of the host and the guest, and do not necessarily reflect the views of The Epoch Times.
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I can't even begin to tell you the suffering of these kids, these people, not knowing if all of a sudden you're going to be not able to drive your car, not able to walk.
It's really so sad and so tragic.
Patrick Girondi is an author, musician, and founder of San Rocco Therapeutics.
His life changed in 1992 when his son was diagnosed with thalassemia, a rare and often overlooked genetic disease.
They said he wouldn't make it to be a teenager.
Determined to change that outcome, Patrick set out to find a cure.
We use a disabled HIV virus.
We put a new gene in it, infuse the gene back into the patient.
Cured.
Now we have a product that's 30% better than the approved product and which will cost 75% less.
From Patrick's story, we learn about perseverance and the difficulties of confronting a broken healthcare system in America.
The system itself is just so corrupted and so inefficient and something's got to be done.
This is American Thought Leaders and I'm Yanya Kellick.
Patrick Drondy, such a pleasure to have you on American Thought Leaders.
I'm honored thoroughly.
Your son in 1992 was diagnosed with thalassemia, very serious disease similar to sickle cell,
you set upon yourself to actually find a cure and you did and tell me how this all happened.
Yeah, sure. And I'm a Rags to Riches Story. I was on Oprah Winfrey show, Rags to Ritchard,
Playgirl magazine, one of America's Most Eligible Bachelors with Sylvester Stallone and
Magic Johnson. And I got shocked in 1992 October, so this is actually my 33rd anniversary.
and my son was diagnosed with thalassemia.
They said he wouldn't make it to be a teenager.
Thalassemia is a defective beta-globin gene,
and it's a cousin or sister disease to sickle cell disease,
which also is created by a defective beta-globin gene.
And there were no matches to give him a bone marrow transplant,
and I had to figure out what to do.
So, I mean, of course, you're nothing to do
with the medical sciences here whatsoever,
but so what got in your head?
Well, after the anguish, I began reading.
My friends went to St. Luke Hospital,
the University of Chicago.
Of course, back then, the internet wasn't like it is today.
And I received miles and miles of faxes.
I bought every hematological book or book on hematology that I could possibly get my hands
on and learned everything about the disease that I could.
I didn't want to transfuse my son because in 1992 there were still no antibodies for HIV
and for hepatitis C.
So I scoured the world and found a professor who was using experimental medicine to stimulate
the fetal hemoglobin.
My son and I went to Children's Hospital of Oakland Research Institute in Oakland, where
he lived for three months.
And we were doing a product called Argini Bouturate.
was one of the first gene therapies actually because it stimulated the fetal hemoglobin
to again produce.
I couldn't remain there because it was $70,000 for 40 days.
My son had to be hospitalized because it was IV.
So I moved to Italy, 25 miles away from my grandfather's town, forever, basically, and opened
up a medical center.
San Rocco Medical Center in Altamura, Italy.
My son was being treated there,
and it worked until about 2000,
and by 2000 anyway,
the blood had become infinitely more safe,
and my son began transfusing every 15 to 20 days.
In 2000, I met a researcher,
French researcher named Michelle Settelin.
He published a Natureman,
magazine that he cured six generation of thalosemic mice.
I read it.
I met him in Rome when he was at a seminar, and I knew that I had found the cure for my son.
I knew it.
In 2003, Michelle Settelin was desperate for finance.
And, of course, as I said in the beginning, I had been a rags to riches story.
I had money to pay, to spend, and I did.
In 2005, I bought the intellectual property.
And in 2010, San Rocco Therapeutics delivered the world's first batch of gene therapy, because
up until then it was made one person at the time, about a million dollars a person.
We were able to make enough for about 10 people for $1.3 million.
And it's been an incredible story.
So I want to try to understand, you focused, this whole time you focused your work of San
Rocco therapeutics just on this particular therapy, figuring just this particular
therapy.
Yeah, so San Rocco is dedicated to this therapy, basically.
However, over the years, we've been, become involved in so.
many different rare diseases because people would reach out to us.
You know, parents in desperation would read about me, find my story, find me.
Sometimes through friends, I'm also a musician.
So sometimes they would come to me after concerts.
And we actually have dealt with dozens of very rare diseases and assisted people whenever
we possibly could. I'm a Catholic and a big follower of St. Francis, actually, and, you know,
let me be an instrument of your piece. And we did what we could. So San Rocco, we're specifically
a company that will bring accessible gene therapy to the world for sickle cell disease
and thalassemia. That's our main goal. However, we're a rare disease company.
And so explain to me in 2010, so now we're 15 years from the present, but in 2010, this is a gene replacement therapy that we're talking about.
So explain to me what that is, how that works.
Sure.
So gene replacement just means you change basically the engine.
So you've got a car, right?
It's not working properly.
Change the engine.
So that's the beta-globin gene.
And we use a disabled HIV virus, we put a new gene in it, we give the patient chemotherapy,
we take his stem cells, we incubate them with the gene, billions and billions of copies,
we infuse the gene back into the patient, cured.
He is now creating adult hemoglobin.
And how does that, I guess, stick, if that makes it?
sense. Explain to me how that's different than, you know, just basically taking a treatment,
sort of a conventional treatment. What makes the body start producing? Well, because we
put into the stem cells, the beta-globin gene, the fixed beta-globin gene. And from then on
out, the body makes beta-globen gene, the correct beta-globate gene. It's no longer defective.
And the stem cells basically just replenish themselves in the body after this.
Yes.
I see.
That's remarkable.
It's truly remarkable.
It's kind of funny because I remember in 2005 when I bought the product and I didn't really want to buy the product to be quite honest.
Over the years, I've had a wonderful trip in 1995.
John Walton, the Walmart became my partner.
Great guy.
Chrissy, his wife, I love a wonderful woman.
They had a son Lucas, who in 1987 was born in 1990, I believe he was diagnosed with Wilms
tumor, and argent abuturate that my son was on had an application for Wilms tumor.
And John and I became partners.
We were partners until 2004.
The Walton family in our project and San Rock will put in about $24 million, all told
from beginning to end.
John unfortunately died in a plane crash. I ended up with San Rocco, and I looked to get help. I talked to Bear, I talked to Novartis, back then I think was Chiba Gagi or Sandos. I mean, I talked to all of these pharmaceutical companies because I didn't feel that, you know, I could ever do this myself. And they were all very polite, and they patted me on the back and told me what a wonderful father I was, but that it was.
science fiction it was crazy i mean literally um i'm a trader you know i made my money on the board
of trade in chicago the mercantile exchange and then became members in new york stock exchange
had a swiss banking license all of that so i'm a trader and um they bet 100 to one that i would
fail because for them gene therapy in 2005 was science fiction
And so I was lucky.
And then in 2010, we finally had a batch of gene therapy ready to treat patients.
And so what happened?
Well, a lot of wonderful people gathered around.
Professor Chris Ballas is one of them.
And there's so many of them.
Michelle Settle, and I'll forget all their names, Susan Perrine.
And it was like this team effort.
Most of them weren't paid because they knew by that time,
I was spending only my own money.
money. I didn't, you know, I raised very little money. Joe Feldman, my partner, got involved,
the Feldman family, put in money. But, you know, all in all, my company, which basically is
32 years old, because we were formed in 1993, we weren't always San Rocco Therapeutics. The name
has been changed. But we were, you know, total 70 investors. And out of the 70 investors,
or 60 of them invested like $50,000.
So we were able to generate all of these wonderful people.
And like I said, many of them never got a paycheck.
And we put our heads together and were able to tweak the product that I bought in 2005
and create a better product, which, and we were the first in the world.
In 2012, our product was the first in the world to,
treat a patient. What happened with the patient? So we treated actually four
patients total and we decided to use milosuppression. So mylo-ablation is when you
kill all the bone marrow and you need to do that, unfortunately. Well, so this is the thing
I was trying to get at earlier. How do you get the new stem cells to stick? Right? Now you're
telling me how. Yeah, so yeah.
So in 2012, we erred on the side of caution, and we gave the patients eight milligrams per kilogram of busulfin instead of 14 to 16.
So we killed maybe 30, 40 percent of their bone marrow.
One patient was treated off the protocol because of age, but three were treated on the protocol.
two out of three today still have a reduction in transfusions of about 43%.
So it worked, but only halfway.
And John Tisdale, who's a wonderful friend and the head of gene and cell therapy at the NIH,
a guy who could have went and made millions and millions,
but instead decided to be a public servant,
he was always sure that we should have done myeloblation.
And if you do myeloblation, blative therapy, you will get the patients cured.
But we treated the patients back.
We were the first ones to treat in 2012.
Those patients today have a 43% reduction.
Now we will use mylo-ablation.
Now we will use a product that's actually manufactured in a more modern way.
And we have tweaked the product that it's actually 30% more effective than the old product.
And we'll cure these patients without a problem.
the situation with your son?
Rocco is my son and has nothing to do with San Rocco.
San Rocco is a patron saint of hopeless disease, right?
During the plague in Europe, in the 1400s, he was selfless and a wonderful story for
us.
But Rocco, who has my grandfather's name, who raised me, he's 35.
And he's never complained once.
He's had operations.
He's had to go into transfuse hundreds of times now, et cetera,
and has had issues.
But thank you.
He's a wonderful man, and he will be cured within six months.
So, OK, so let me see if I've got this straight.
You started out.
At the beginning, transfusions weren't going to work
because of the potential for these diseases
when there was frequent transfusions,
you actually got him basic treatment,
the one that you mentioned, the first type of treatment.
Then he started getting transfusions.
Transfusions became safer.
Then this product came online,
and you partially were able to treat people.
And it took basically to today to have a product
that can be a complete cure.
Yes, yes.
There are two cures actually in the United States
that are authorized,
gene therapy cures. One is called LifeGenia by Bluebird Bio. It's 3.1 million. And the other is
a CRISPR product called Cass Chevy. Now, CRISPR doesn't replace the gene. Crisper edits the gene,
meaning that they basically go in and snip the BCL11A gene. The job of the BCL11A gene, the job of the BCL
11A gene is to suppress the gamma-globin gene, which is fetal hemoglobin.
So when we're a year and a half old, basically, this BCL11A suppresses our fetal hemoglobin,
and then naturally the adult hemoglobin starts working.
So CRISPR snips the BCL, they disables it.
Now with the BCL 11A out of the way, the patient is again expressing fetal hemoglobin.
There was recently an article that came out last week actually.
And that is that you have gene replacement, you have gene editing.
Now we all know that no one can afford or few can afford 3.1 million or 2.2 million.
But the difference is that mine is gene replacement and our patients will have the adult
hemoglobin, which that's what nature intended.
And the patients that do CRISPR, which is called caschievous, they will for the rest of their
lives express the majority fetal hemoglobin.
There's no one that can say that it's possible that fetal hemoglobin may be better for an adult
to make then adult hemoglobin.
But no one really knows because CRISPR really is brand new.
I mean, the first patient was treated like five years ago.
So we still need to, we still need those long term studies
to see the outcome of those people.
So there's people that have been treated both
by through gene replacement, which is a product that's
similar to what you have.
And there's another product that is editing, like you
said. And then so, and what does yours bring to the table? The cost becomes more accessible.
Yes. So, ours is about 30% more efficacious to the LifeGenia product. Actually, they have
LifeGenia and Zintaglo. Zinteglo is for Thalassemia. Lifegenia is for sickle cell disease.
LifeGenia costs 3.1 million and Zintaglo 2.8 million, but they're the exact same drug.
And our product is 30% more effective than that product.
So there's no doubt we're going to be curing these patients.
And I've made a promise that we would keep the cost under $1 million a patient for the next 10 years.
So I think initially it would be about $800,000.
And these products cost a lot.
It costs my company a lot of money to cure patients.
But we believe that $800,000 is a price that we can offer accessible therapy that people can afford,
that the government of the United States can afford, that the insurance companies can afford.
And as well, build our company stronger so that we can do more.
more work in the orphan disease field.
In the orphan disease field, what does that mean?
Well, so there's 6,000 orphan diseases, you know, that means they have to be under 200,000
patients in the United States, 250,000 in Europe.
And I promise, when Rocco was diagnosed, I'll never forget it, and we went to Pezzaro, Italy,
to see about a match, and we found out that there was no match in the family.
I guess probably the only time in my life I can ever remember being desperate.
I promised the Lord that if he would help me save Rocco's life,
that I would dedicate the rest of my life to fighting these rare diseases.
Because when he was diagnosed and they told me this word thalassemia,
I mean, I couldn't spell it.
I could barely pronounce it.
And then the explanation and the education about all of these rare diseases and all of these families who are stuck with this just egregious, just, you know, horrific news.
And I'm more fortunate than others because I had cake, you know.
I had the resources.
And so anyway, so that's what I mean by we will dedicate the rest of my life anyway.
And after I'm gone, which I'm sure it won't be that long,
I hope that, you know, the company is around,
that we can continue to dedicate, you know, the resources,
not to making the CEO rich or, you know, the company rich.
Of course, we want to be good to our investors.
We want to make a solid company.
We certainly are capitalists,
but we're capitalists kind of in the old-fashioned way,
where the first one to sacrifice is the boss.
So, and what happened between 2010 and 2025?
First of all, everything that I'm telling you is documented in a court case in New York Supreme Court.
The product was sabotaged by Bluebird Bio and Third Rock Ventures.
And we, I didn't know it, of course, but the product I handed over, I relinquished my control of the product in 2011, believing that things would go ahead nicely.
Finally, in 2017, I filed a lawsuit because of the Bluebird Bio product going fast to.
than our product and knowing that the Bluebird Bio product was inferior to our product.
We did discovery and in the discovery we found the PowerPoints from Bluebird Bio where they said
that the San Rocco product was three to five times more efficient. They had to get a hold
of it. They had to destroy our company basically and that's what happened. In 2021 basically we
settled, and we got back on the horse. We improved the product with Professor Frank
Park, University of Tennessee, Professor Andrew Wilbur at Southern Illinois University,
John Tisdale at the NIH. I don't know. I apologize if I forget anybody, but it's really a team
effort. And now we have a product that's 30% better than
the approved product and which will cost basically, you know, 75% less.
And so, and with respect to your son, why has he waited this long to go for the cure itself?
Sure. So the cure was only approved in December of 2003. So Kaschievi and Lifegenia were
approved in the United States in December of 2003. But as of today, I mean, I would guess that
less than 50 patients have done the product. A lot of it is because, like Jenny is in a black
box, meaning that when doctors prescribe it, they have to tell the patients that there have been
a couple of cases of leukemia in the past. I don't think it has anything to do with
the beta globin gene and neither to most researchers but sickle cell disease
patients have to do hydroxyria every day or every week etc and it's a little bit
different than the Thal patients but so yeah my son wouldn't have done it
because it hasn't been approved until December of 2003 well and and you're
saying that there are significant side effects that you might be concerned about
yeah I mean so anything you got to be concerned about that's for sure
Bluebird had two cases, I believe, of leukemia in patients that were treated, that it was like 6% of the people treated roughly.
Generally speaking, sickle cell disease patients will get leukemia anyway, about 3% of them before they die.
So it was like double, and they halted the clinical trials, et cetera.
However, most people don't believe that it's the lentiviral vector.
The lentiviral vector, which is the disabled AIDS virus, has actually been in people since 2003 or 2004 with the AIDS.
They were using experimental AIDS potions.
So we don't believe it's the lentiviral vector.
But, however, like anything, my son will have to do myeloblation.
There are problems with that, with all of that.
However, if you have to weigh it out and doing transfusions the rest of your life, iron
culations, everything that comes with it, a patient health is, of course, you know, recaptured.
And for the government and for the health providers, whether it's one payer as in Italy
or as in the United States, you know, these patients are costing probably in the United States
$150,000 a year anyway. So, you know, for us in five or six years, they paid our product
at that price 800,000 has paid for itself. But even in Europe, where prices may be somewhat
cheaper, the health care provider will find it in their best interest to do our product. But
But yes, there's always problems or it could be problems to any disease or any, any medicine.
And so far, so good, I think that the results in gene replacement and gene editing are fantastic.
And so, I mean, is it fair to say that your product has a lower risk profile?
And that's the reason why your son is doing that?
Yes, definitely.
Yeah. I mean, you know, otherwise my son will have to continue to transfuse every 15 to 20 days.
We'll have to continue to take the risk with the blood, have to continue to do.
What is the name of it again?
Phaloscemia.
No, no, no, the product.
Mini Rolu.
Mini Rolu.
Oh, I'm glad you asked for that.
Yeah, so, and okay, let me, let's go back for a moment.
Okay.
So when it comes to Mini Rolu, which is your product, the San Rocco Therapeutics product,
It has a better risk profile, if I understand, just kind of explain that too.
Yeah, we believe it has a better risk profile because it's 30% more efficient than the approved product.
So efficacy means you use less product.
Less product means less toxicity, if there is any toxicity.
But if there is toxicity, it's less toxicity.
So, yes, we believe that it'll be safer.
But aren't there trials that would reflect this?
Well, so we are, again, we will be in patience again within six months in the United States and in Europe.
And this administration has been very supportive.
Senator Tim Scott last week, I met with his team.
Megan, wonderful people.
I've met with Secretary Kennedy's people.
they're very supportive
and also in Europe
where we're dealing
our principal investigator is
the Surgeon General of Italy,
Franco Lucatelli. So everyone's
very supportive. I would
say that most everybody knows who I am.
And for that
reason, in a certain sense, there's a bit
of trust and
we will be
our clinical trial is still open
but we haven't treated
patients since 2015.
I told you that.
So now the clinical trial is continuing.
And maybe it was best this way,
even talking about, you know, the court cases and sabotage, et cetera.
Maybe it was best that way because we improved it, right?
So in 2021, when we settled and we were in a certain,
certain sense, forced to look at everything again.
We were lucky enough to find researchers,
like Professor Park, University of Tennessee,
Andrew Wilbur, who I've known for a long time,
Southern Illinois, John Tisdale,
because we actually modified the product.
We've made it safer, we've made it more efficacious.
So, I mean, you know, the Lord works in mysterious ways.
So, and just, so the current treatment,
treatment, you're basically wiping out the existing bone marrow.
Yes.
And then you're using this modified virus to put in and to basically create stem cells,
which have a new gene now replaced, which produces hemoglobin properly.
Yes.
That's it.
That's it.
You got it.
Change the engine.
And afterwards, are there kind of drugs that people have to take?
No.
It's done.
You're done.
I mean, obviously with myeloblation,
myeloblative therapy, which you do in bone marrow transplants,
et cetera, you're for 30 days, you have to be very careful.
And then 60 days, you have to be careful, et cetera.
30 days you're hospitalized, you know.
But yeah, then you're done.
Fantastic.
And so basically you are at the moment recruiting
for your clinical trial.
Yes.
And it sounds like yourself is going to be one
Yes. Okay. Now I got it.
Yes. My song will be one of the first ones. And Mini Rolu, right, is actually, I called
Christy Walton. I don't remember last year or something. And I said, Christy, you know,
your family's been so good. And I'd like to maybe name the product after John, her late
husband, you know. And she goes, Pat, I don't think John would necessarily like that. She said,
He was always for the little guy, the underdog, and he was, John Walton was a wonderful guy.
She said, name it after the patients.
So, M-I-N-I-R-O-L-U are the first two letters of four patients.
Of the patients back in 2010.
Yeah, from the beginning.
These are the alicemia, sickle cell patients, actually.
One loo is one that had Wilms tumor.
But these are the four patients,
the kind of the cornerstone of the company that brought it all together.
These are four of the patients.
So we decided they call it mini Rolulu.
Tell me more about these orphan diseases
and how the medical system deals with them today.
So we have 6,000 orphans.
diseases. In 1983, the Orphan Disease Act was introduced. Marlene Haftner, who at the time they called
the godmother of the Orphan Disease Act, who's a wonderful woman who I speak to today even.
They said there's no money going into curing diseases because there's no money in it, because there's
too few of them. And they came up these rules and regulations, stimulations. They gave 50% tax
credit to people who would invest in clinical trials for orphan diseases. Today, it's
25%. They would give all sorts of, you know, stimulation through finance, et cetera, to companies
who would dedicate themselves to curing rare diseases. And it was a wonderful legislation
and that there are 6,000 rare diseases. I believe that the 1983 Act needs to be revisited, to be
quite honest, because I think there needs to be some kind of separation because you have a
disease like sickle cell disease where 100,000 patients can't be treated like a disease
leukocyte adhesion deficits deficiency excuse me where you only have like 100 patients you have
different rules but it's a it was a wonderful piece of legislation and that's why they were
called they were called rare diseases in the end they were orphaned by big pharma supposedly
and that's why today they call them orphan diseases as well as rare diseases.
And how many companies are there that are trying to go after some of these?
Yeah, so up until 83, there weren't a lot of them.
But in the 90s and then the 2000s, a lot of companies realized there was huge money in the orphan
disease is created by the Orphan Drug Act.
So now there's hundreds and hundreds of companies that are going after these rare diseases.
I would say how many of them are successful.
Obviously, we all know that it's not really easy to ever get into clinical trials.
You know, we're one of the few companies of our size, for sure, that ever got in the clinical trials.
But there's some, how many, I don't want to say ethical companies are doing it,
but there's a lot of companies doing it.
And I'd like to, as well, make a statement that I'm all for pharma.
And I hate when I hear people say, I'm against big pharma.
You know what, in 19 or in 1830, 1730, 50% of the people made it to live to be 30.
1830, they lived to make it to 35.
Today, we make it almost to 80.
And we couldn't have done that without the pharmaceutical companies.
So when people bash the pharmaceutical companies, you know, like with this bludgeon, I'm against that.
Because there's a lot of wonderful pharmaceutical companies, and we certainly need more of them.
And I've met so many ethical, wonderful people in the pharmaceutical industry.
Unfortunately, they're not all that way.
And so we need to have a little bit more, pay a little bit more attention.
because of price reasonings, because of stock and options and warrants and all of those things.
But I don't want to go on.
There's been some significant changes in HHS and its sub-agency's since this new administration has taken on.
You mentioned that you've spoken with Bobby Kennedy Jr.'s people, the HHS secretaries, and so forth.
What do you think about those changes?
In infant mortality, the United States, the last time I would look was around 64.
Italians lived to be 82.7 years of age.
Overall Europeans, 81.5.
Americans lived to be around 78.5.
And we spend anywhere, depending how you calculate it, three to five times more per capita.
So if nothing else, it tells you that the health care system in the United States is completely broken, completely broken.
No, I'm not going to blame, I don't know who did it, and I'm not going to, I don't care about Democrats, Republican, I don't care about all of that.
But anyone who wants to defend the U.S. health care system is a bit ingenuine, I would say.
that, to be kind. So you're, so you like the fact that there's reform on the
of course. I can't say that everything that HHS is doing is right or wrong. I don't know
everything they're doing first of all. But it there needs to be a dramatic change. I mean, if it was
possible, me personally, Patirani, I mean, I just start from scratch, but you can't start from
scratch because we've got millions of people that are already in it. But yes, I mean,
And I welcome Bobby Kennedy, or if his name was, you know, Dr. Doolittle, anyone that's going to bring
dramatic change, I welcome.
And like I said, infant mortality, longevity, and cost.
Those are the three things that all you've got to look at.
Now, you can put all the experts in the world on a panel and they can tell you how everything
is great or not great, whatever.
Here, infant mortality, longevity, and cost.
The United States is in serious trouble with their health care system.
And again, anyone who defends it is the kindest word I can use in genuine.
So that's fascinating.
For you, it's those three metrics, which are really the measure of a successful health care system.
Yeah, I mean, we love our, we'll do everything to save our infant children.
I mean, it's the most emotional time in our lives, you know, so infant mortality is huge.
And longevity, I mean, what's more important than, you know, everybody, you know, living a long,
healthy life. And then, of course, cost. And so again, I have to debate people from time to time.
I just got back actually from Burkina Faso, where they, I was invited to give,
suggestions on what they can do for their 65,000 sickle cell disease patients. But in the end,
the United States healthcare is a shambles. I mean, it's a joke. It's, and not a funny one.
It's tragic. I mean, just people, you know, trying to figure out if they're going to, you know,
pay their heat or they're going to buy their medicine. I have many people in my family who,
you know, the doctor says, you know, take this pill every day and they're talking.
and they're cutting in half because they just can't afford it and all of the crazy you know what do
you call it when you have to pay the first oh deductibles and then i mean the nightmares that have you
know i had a friend of mine recently treated he got surgery on his hip and you know he got a 12 000
bill and then he said but you told me i could go to that hospital and they said yes but the
laboratory of that hospital sends their stuff out to another laboratory so we don't we don't do it i mean it
It literally, literally is a nightmare.
I mean, if there's one negative thing, I would say generally speaking of the United States of America,
it's the health care system.
And in my opinion, the secretary of HHS has the toughest job of anyone because it is literally a tragic joke.
And again, I know a lot about the FDA.
I've dealt with many people with the FDA, et cetera.
And I love there's so many good dedicated people.
John Tisdale is a close friend of mine probably for between 25 and 30 years.
John could have left and made millions and millions and millions and working for some private pharmaceutical company, et cetera.
So there's dedicated people.
But the system itself is just so corrupted.
so inefficient, and something's got to be done.
What was your advice to the Burkina Faso government about their patients?
Yeah, so hydroxurea is a staple for sickle cell disease patients,
and they're not getting it, and they're not getting it because hydroxuria is made by Squibb,
and they can't afford it. However, there are,
Generic products made in India and Nigeria.
And that was the biggest suggestion I have.
And it was great.
They're great people, very hospital, everything was great.
And the other thing that I suggested is bit off the wall.
And that is that when you do research with sick patient cells,
it can be cost prohibitive.
So in other words, I need sick patient cells who have sickle cell disease,
disease, so I have to go to, I won't name the company that we go to, but I have to go to
XYZ company. You know, they'll charge you $25,000, $30,000 for these sick patient cells. So I told
Burkina Faso, you've got 65,000 patients, open yourself up a business and sell your sick
patient cells to people that are doing research. There were basically the number one and the number
two things that I suggested. Interesting. Well, so you've been, I mean, you really have had
to think outside of the box all the way from the beginning, right?
I was a shoe shine at about six or seven years old.
And after that, I was a bus boy.
And then I washed dishes in a hospital.
I was about 15.
Then I was a mechanic, about 16.
Then I went in the military at 17.
Judge Clarence Bryant kind of recommended it.
So I was military to jail.
So it was military is a lot better.
And then I was, you know, I was a, I got out.
and I was a truck driver and worked on the docks,
and then by kind of fickle luck, whatever you want to call it,
it's a great book, Flight of the Rondoni, by the way,
I ended up a trader.
And like I said, we had three New York Stock Exchange members.
We were members of the Urex, Sophics, the DTB,
which Chicago Board of Trade, Chicago Mercantile Exchange,
Chicago Board of Option Exchange, I mean, everything.
And I always had to think outside the box,
because, like I said, I'm a Catholic, and I went to a Franciscan seminary.
I wear the tau.
My sons wear the tau.
The Franciscan towel.
Bobby Kennedy, actually, where's the tau?
Well, I gave him one with the K on it, and he is well as very fond of St. Francis.
So when you want to be ethical, and at the same time, you want to be effective,
and you're doing it in industries like health care,
You don't have a choice. You have to think outside of the box.
So give me a picture of what can happen next.
Okay, so my dream. I've met, you know, Obama, President Obama.
I made music for him, actually, to be quite honest, and did some work.
And I met Kamala Harris. I've met President Trump. I've met Vice President Vance.
I know Bobby Kennedy
and I'm a completely
apolitical guy
but
Tim Scott
Senator Scott
one thing that they all have in common
and one thing that they've all told me
at one time or another
is that they support
the idea of having
accessible
gene therapy
for our parents
patients, our sickle cell disease patients in particular because in America we have 100,000
of them. And I can't even begin to tell you the suffering of these kids, these people,
the strokes that they have, the living moment for moment in not knowing if all of a sudden
you're going to be not able to drive your car or not able to walk. I mean, it's crazy. It's
It's really so sad and so tragic.
So whether we're talking about President Trump who truthed our story, or we're talking
about Chuck Schumer or who I met once as well, they're all behind an accessible cure,
gene therapy cure for sickle cell disease and thalcemia.
In my little way, I'm a little guy, not that bright.
Like I said, I didn't graduate from high school.
I won't be around that much longer, I mean, you know, how much time do we have?
But in my own way, I'm praying and hoping that my project can unite the Chuck Schumer's
and President Trump, President Obama, et cetera, all together.
in a certain sense, behind this accessible cure for sickle cell disease and thalassemia.
And we can all be joyous in it and see that we really have so much more in common
than we have in conflict.
And that's become my recent dream, and I hope that I'm strong enough to see it happen.
How long until Mineirolo could be fully licensed,
assuming these final trials go well?
Yeah, a year and a half, two years.
But we'll be in patience within six months,
both the United States and Europe.
And then a lot's going to depend on the administration,
how they see things.
But yeah, I think that we could be a product within a year and a half.
A final thought as we finish?
if I made any errors in speaking or wasn't as articulate as I should have been, I apologize.
My favorite poet, actor in Italy, his name is Toto, and he says that he took his heart to school
and try to teach it, how to read and write.
But his as mine is an illiterate heart,
and we were only able to learn one word, love.
Well, Patrick Girondi, it's such a pleasure to have had you on.
Thank you very much.
Thank you.
I'm honored.
I love your show.
the people that you bring on here are incredible. I love that Hazan, I think her name is incredible.
I mean, really, and I compliment you for all the good you're trying to do for our country and our
world. Thank you. Thank you all for joining Patrick Girondi and me on this episode of American
Thought Leaders. I'm your host, Yanya Kellick.
