S06 E09: Fallout

True story media.

People listening to this they will have heard in the finale, which is very much not the finale because holy cow, there's a lot happening behind the scenes.

But you know, we laid out some of what we hoped Guthie Jackson would do in light of the information that they now had.

And of course, that episode was recorded a couple of months ago.

And so now we do know what

they have done.

So I wanted to talk about that.

But before we get into all of that,

just

how are you doing?

How has this been for you?

Yeah, what a loaded question, right?

It's been a lot.

I think that is the

best thing I can say is a lot.

It's all been very, very emotional.

And the last episode hit me really, really hard of just like kind of me and Sabrina having that moment to like reclaim college.

What I guess what I didn't expect was the outreach that I've gotten and like everybody has been so incredibly positive and supportive and I'm so thankful but it's also a little overwhelming and like I don't say that to take away from how grateful I am for it because I really am grateful for every single person that has listened, who has reached out to me, but it is a lot and a little, a little overwhelming at times.

So I'm taking lots of breaks from my phone,

taking lots of breaks from social media,

and you know,

spending the summer with my kiddos and just trying to take it, you know, one day at a time because there's a lot, it's a lot of information that has come out.

You know, there's just a lot, a lot of new information I've got.

Yeah, and I mean, I think

we too have been surprised by just the amount of people coming forward with new details

certainly outpaces anything that we've had on the show before.

There's different groups of people that you've heard from and that I've talked to and that we're going to be following up with in future episodes.

So you had said something to me that really resonated in terms of what it's been like to hear from some of these people.

And you have said that

it made you realize that you really didn't ever know your mom.

Yeah, for sure.

I think, and I remember you talking about it a lot on the show before about your sister.

You know, I remember you saying like grappling with this, these memories you had of her were never real or were they ever real and kind of coming to terms with that.

And I

really don't think that is something I truly felt until I saw the screenshots that I've gotten from messages, you know, my mom is sending people,

until people, you know, have come forward and told me all these different things about her and all this new information and new information about her just since the podcast has aired.

And so that really has been

just kind of in the middle of really kind of, I don't know even how to say it, but just really examining, did I, yeah, the person that I thought my mom was, like the image I had of her

just was never real.

And I think a lot of that comes from, I think it's really hard for like normal quote normal people to

really understand this level of abuse.

Like it is very hard for you to comprehend somebody doing these horrific things to their child.

But something that is like easier to digest is the fraud aspect of it.

Like you can, that's just, it's just a little bit easier to digest, if that makes sense.

And seeing the screenshots, I mean, there's no looking at that any other way.

And so it's been, it's been a journey for sure still.

Like I really thought I had kind of, by the end of our recording,

I thought I had kind of understood my mom a little bit more in the only way I could and kind of understood.

But then getting all the new information, just, yeah, it really hit that I just, I did, I never knew her.

With dealing with someone like this is like, this is something that's been an evolution for me, but then like dealing with your mom's case and watching you go through this, you know, not just throughout the season, but like throughout the last several years, has really

deepened my feeling that like

someone like Lisa, someone like my sister, Megan,

there's no person there to like get to, you know, I think from day to day and it's like, I think what we've discovered with Lisa is that not only did she have a mask, she had a collection of masks and she put on a different mask for different people, for different groups in different scenarios.

And I think you just realize like that it's just all this kind of hall of mirrors, you know?

Yeah, and I mean, it's never-ending.

You know, I just, it occurred to me one day that, and it was kind of, it was kind of scary in my brain at the time i will never know the lengths that she went to i will never know the amount of people that she harmed the amount of people that she defrauded the amount of people that she manipulated i will never be able to really see that and calculate that and and yeah i mean i can't even

gosh you can't even name the people you know there are just so many involved and that's just it's kind of mind-blowing it kind of makes me sick to my stomach to think because it's, you know, there's nothing that I can really do about that, you know?

When I was looking at Lisa's online presence while working on season six, this dissonant image of a polished, caring advocate, I was struck over and over again by the fact that all of these people who admired her had no idea who Lisa really was.

And now there's a deeper question, does anyone?

Our investigation started with questions about Colin's illness and death.

And by the end of it, even if the questions hadn't all been answered, the picture of what happened had come into much sharper focus.

But the messages that have come pouring in both to Michelle and to our team have confirmed that what we know about Lisa's lies may be the tip of the iceberg.

Because once the show was out, many people were finding out that Lisa was not at all who they'd believed her to be.

And for one of these people, Victoria Jackson, founder of the Guthy Jackson Foundation, these revelations about Lisa were especially troubling because she was on their payroll.

The moment I wrapped my investigation, I reached out to representatives from Guthy Jackson and told them what we'd uncovered.

Not just Lisa's previous criminal conviction, but the highly suspicious nature of Colin's illness and death.

And now they'd have to make the choice we all have to make when confronted with the horrible truth.

What will we do about it?

The story of Colin McDaniel's illness and death, purportedly from the rare autoimmune condition NMO, has been woven into Guthy Jackson's marketing materials nearly from the beginning.

Lisa attended the Foundation's very first patient day in 2009, and that December, the Foundation hired a film crew to document Colin's story, which included video of him getting treatment in the hospital from Dr.

Jane Ness.

Ness, as you may recall, is the pediatric neurologist who would, many years after Colin's death, confess to his older sister Michelle that she wasn't even sure Colin had NMO and that his death haunted her.

Lisa's role as Guthy Jackson's director of patient advocacy gave her nearly endless opportunities to not only talk about Colin's death, but to get a wellspring of attention and admiration for doing so.

not to mention an eventual salary.

But as both we and the folks at Guthy Jackson have now known for months, Lisa wasn't a heroic advocate.

She was a convicted child abuser, and it appears extremely unlikely that her son Colin died from NMO, the disease that Guthy Jackson is dedicated to.

It seems far more likely that he died as a result of his abuse.

In our season finale, we talked about what we hoped the Guthy Jackson Foundation might do with this disturbing information.

And although that episode just aired on the main feed, my conversations with representatives from Guthy Jackson happened back in May.

So while we shared how we hoped they'd respond, now we know how they've actually responded.

By chance, Guthy Jackson held their annual patient day less than two weeks after the first episode of the season aired, though a record number of listeners had already listened to the entire thing on the subscriber feed.

Guthy Jackson broadcasts part of their patient day on YouTube, so we were able to tune in.

Early on in the programming, Victoria Jackson steps onto the stage against a colorful backdrop of flags representing all of the many countries involved in their work.

She takes a seat opposite Dr.

Michael Yeaman, a close collaborator of Victoria's, who has been one of Guthy Jackson's highest paid advisors since its founding.

After they settle in, they get into it.

Overcome them and move on.

We've kind of been learning a little bit about a story that's out there that we wanted to kind of address and

have a chance to kind of just

talk about it.

I think, you know, I'm talking to a group of people here that having challenges is, you don't need me to be telling you about challenges.

And, you know, as a foundation, everything to me that has gone on for 17 years, and when I have any decision that I'm going to make about anything, I always want to be really, really thoughtful about it.

And I know some of you know about a podcast that came out recently that was about a story of somebody that was obviously working with the foundation and really, you know, took that very seriously and been, you know i i think gave me quite a lot of pause at the same time i know a lot of you are not here to hear about podcast stories and all of that you're here more to hear about let's call it more of like a forecast of the future and where we are in the world of nmo

but i always want everybody to know as i've been questioned about this and asked about it, that for those of you that have been following that story,

as soon as we learned about it here at the foundation, we took it, especially me, very, very, very seriously and made changes immediately.

And I want everyone to take comfort in at least knowing that, that

this means the world to me and to my husband and to the family.

And as you've all heard, you know, 17 years later, 80 million dollars of our family money that we've put in.

We, you know, people have asked, do you get anything back from pharmaceutical companies or anything that you've sponsored?

The answer is absolutely no way.

On August 5th, buried at the bottom of an announcement on Guthy Jackson's website about Lisa's former coworker, Corey Wolf, being promoted to director of patient advocacy, they finally addressed it a bit more directly, writing, We greatly appreciate each of these dedicated individuals who are the current representatives of GJCF patient advocacy.

Only individuals officially authorized by GJCF may act on behalf of the the Foundation in patient advocacy roles.

In response to questions that we have received, and as many of you already know, Lisa McDaniel has not been affiliated with GJCF for some time, and she does not represent the Foundation in any capacity.

And that, at least from Victoria, was that.

So, enough said?

Not quite.

Since the show aired, we've heard from a number of patients and caregivers who'd met Lisa through the Guthy Jackson Foundation.

Some of them had been communicating with her as their advocate for years.

This news has clearly hit the community hard.

So today, we wanted to take a closer look at the Guthy Jackson Foundation and its role in this case, and what it means for other rare disease groups who might be targeted by someone like Lisa.

Because while we may have aired the finale of our season, it turns out it might have been more of an intermission.

This story is developing quickly and we're staying on it.

We've heard from from so many of you, both from people who know this family and people who feel like they do after listening to this heartbreaking story.

We know you want answers.

We do too.

And we're not closing the book on this until we get some.

People believe their eyes.

That's something that is so central to this topic because we do believe the people that we love when they're telling us something.

If we didn't, you could never make it through your day.

I'm Andrea Dunlop, and this is Nobody Should Believe Me.

If you just can't get enough of me in your ears, first of all, thank you.

I have a job because of you.

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It's a deep dive into three of Mike's most impactful Munchausen by proxy cases, and I think you'll love it.

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I wanted to start with a zoom out on a unique element of this case that has struck me from the beginning.

The fact that it takes place in the context of an ultra-wealthy family foundation like Guthy Jackson.

Munchhausen by proxy perpetrators are opportunists, and Guthy Jackson made a huge mark for Lisa.

Cloaking herself within this reputable, well-funded organization helped Lisa obscure the highly questionable nature of Colin's death.

I want to reiterate that while it's not great that Guthy Jackson didn't do a thorough background check on Lisa, this is, in my opinion, a pretty forgivable error.

They'd known Lisa as a patient and then as a volunteer for years before she was in any kind of paid position.

I believe them that they had no reason to suspect any of this.

I count Victoria and the folks at Guthy Jackson who trusted her among Lisa's many victims.

But while they're not responsible for what Lisa has done, they are responsible for how they're handling this news.

As Victoria writes in her book, No life is immune to being shattered without warning, whether by a terrifying mystery diagnosis or an unforeseen tragedy.

Yet the same truth that says we cannot always see into the future also says we have the power to choose how to face it and how to change it.

Denial, Victoria writes, is always an option, but it's never a good one.

As you heard in Victoria's brief mention of the situation, she emphasizes that she doesn't get anything back from the drug companies for her efforts at the foundation.

And sure enough, while a number of drug and biotech companies have donated to the foundation, that money is going to research, which it's worth noting has been highly effective.

As we've emphasized in our previous coverage, Kathy Jackson has made great strides with NMO and has been very important to the community of patients and caregivers dealing with NMO that it serves, something that has been underscored by the feedback we've heard.

But it strikes me that this appears to be a familiar talking point of Victoria's.

She says something almost identical in an interview with CBS this morning.

Mascara to medicine, the power of love and intention.

I gathered just the greatest minds, researchers, scientists from across the world.

I spent $80 million of my own money and no kickbacks, no nothing from anybody but pure love.

So is this project of Guthy Jackson, as Victoria puts it, pure love?

Is it sheer altruism?

Every perpetrator I've covered or read about has at some point preyed on the charity of others, from churches to the Make-A-Wish Foundation to rare disease groups to ad hoc mutual aid from other moms and community members.

Unfortunately, kind-hearted people who are trying to do good in the world often make the best victims for perpetrators, and it's not their fault when they're victimized.

But nonprofits and charities are a pretty underregulated space, so it's worth a closer look.

My name is Rob Reich.

I'm a professor of political science at Stanford University, and I'm the author of a book called Just Giving, Why Philanthropy is Failing Democracy and How It Can Do Better.

Philanthropy at the level of Guthy Jackson is something we should pay attention to, says Rob, beyond our knee-jerk positive response.

The ultra-wealthy are not just like us, and neither is their charitable giving.

If we set aside the category of ordinary donations by ordinary people, the kind of small ball, $50, $100 donations,

and focus just on the activity of the wealthy, the kind of person who has enough money to set up a private foundation that bears their name.

And Big philanthropy is, and I mean this just as a description here, the direction of someone's private assets to some public-facing purpose.

When someone with wealth directs their own private assets to some public-facing purpose, what that person is doing is exercising some amount of power with respect to the public.

It's the private person's power

here expressed in the form of money to shape or change what happens in public.

And my simple starting point as someone who thinks mainly in my professional life about democracy and what makes democracy go badly or well is that, you know, common sense phrase in for a citizen is anywhere that power is exercised in a democratic society, what it deserves is scrutiny, not gratitude.

So let's scrutinize the exercise of power by the wealthy.

I think Rob's framework for big philanthropy is helpful in understanding the power dynamics of this story, which involve people with the types of money that puts them in a really different world than most of us.

Especially because there's a stark contrast between that world and Michelle's.

Michelle and her family are not not wealthy.

They can't hire lawyers and private investigators to try to find out what happened to Colin.

And they can't call in favors with powerful people to put some heat on the officials who should be investigating his death.

Unfortunately, when it comes to getting justice, when it comes to whose safety, whose life, and whose death matter, resources matter.

A lot.

And with ever more resources and power flowing upstream to the ultra-wealthy, and as public programs, including those in the healthcare space, are being gutted, it's worth talking about the broader implications of these exercises in power, which Rob describes with a term that might as well be the word of 2025, plutocracy.

Democracy stems from the Greek origin of the word demos, which is the people, rule by the people.

Plutocracy

is rule by the wealthy.

One thing we agree upon in a democratic society is that citizens are equals to each other.

Everyone gets one vote.

So even though, you know, Bill Gates has way more money and can give philanthropically much more than the rest of us can, when he goes to the ballot box, he gets the same vote that the rest of us get.

That's what it means to be an equal citizen.

One person, one vote.

When it comes to your wallet, however, Bill Gates is a plutocrat and we are, you know, ordinary, ordinary people.

And what philanthropy allows is the shaping or reshaping of the public through your wallet rather than through the ballot box.

So this is not to reject outright the idea that wealthy people should practice philanthropy.

It's to say that it does not deserve automatic gratitude.

As Rob explains, philanthropic foundations of the very rich are quite different than the organizations you or I might donate to.

So a non-profit organization, a 501c3 to use the

IRS language about it, is an organization that provides some type of service and it's not a profit-making organization where it distributes its revenues or profits to shareholders or owners, but

can reinvest whatever revenues or profits it makes into the mission of the organization.

So think, you know, soup kitchens, child care, non-profit hospitals, most universities, even if they're private, are non-profit universities.

The array of nonprofits we have in the United States is enormous.

A foundation differs from a nonprofit, and a foundation is basically just a banking account stuffed with a bunch of philanthropic assets with a number of people who then decide how to give that money away.

And the foundation world funds, in many respects, the ordinary work of the nonprofit world, even though nonprofits, of course, can make some revenue from charging a fee for a service.

If you go to a museum, sometimes we pay 15 bucks to get in, in addition to all of the people who donate money to it.

And sometimes nonprofits also get money from the government to provide whatever service they provide.

Many, you know, child care

or pre-Ks, their nonprofits get money from state grants, for example.

But the basic distinction is that a foundation is a pile of money where people decide how to distribute it, and a nonprofit is a service providing organization that is not a for-profit mission.

The Guthy Jackson Charitable Foundation is a private foundation, meaning that they are subject to far less public oversight than nonprofit organizations such as your local food bank or animal rescue.

They're essentially a fund created by a single donor or small group and typically managed by those individuals.

In this instance, Guthy Jackson Charitable Foundation is run by Victoria and Bill.

There is also the Guthy Jackson Research Foundation, which is public.

This was created, according to Victoria's book, The Power of Rare, in part so that they could accept donations from large corporations, including drug and biotech companies.

Victoria frequently mentions this eye-popping number of $80 million of their family wealth that's been invested in Guthy Jackson.

It's an unimaginable sum of money to have in the first place, let alone to donate to a single cause.

But of course, there's another way in which the very rich are not like us.

Their money tends to hang around making other money.

People who earn money off of their investments, you know, it's not that they've labored, as it were, for it.

They make investment choices.

I mean, it would be like, you know, any ordinary person sets up a checking account and we get whatever, you know, interest on the checking account, usually a very low rate, of course, these days.

But we decide to take all of the interest we earn and put it into a separate account for our Christmas fund or our

honeymoon fund or something.

And then we finally get to spend that money.

And that's not because...

we'd been sacrificing week by week from our paychecks.

It's because we'd gotten a little bit of interest.

And it so happens that if you have a huge amount of money, you can hire fancy investment people and get access to different types of investment strategies.

And as you said,

wealth wealth begets wealth in many respects.

So while $80 million is a massive amount of money for the researchers who received it, and to be clear, it looks like this investment has genuinely paid off, viewing large donations like this from ultra-wealthy people as some kind of significant personal sacrifice is probably misplaced.

Which brings us back to the idea of gratitude versus scrutiny.

This might come across to a listener as somehow cynical or maybe unfair, but you know, since you're located up there in the state of Washington, it's good to use this example.

Bill Gates and the Gates Foundation, he's given away an enormous amount of his wealth, and he created this thing called the Giving Pledge, maybe a decade or more ago, in which people would pledge to give at least half of their entire wealth away

by the time they die, even if when they die, they are creating a foundation in their name.

And many of the people who have signed the giving pledge,

and these are in general billionaires,

have given away a huge amount of money since they've signed the giving pledge.

They're not waiting around till they die.

But almost everyone who signed the giving pledge is today wealthier

than they were when they started the giving pledge.

Like despite giving away billions of dollars, their mountain of wealth has grown in part because of the way that investments tend to work when the economy is growing and the stock market is doing well.

And if if your money is tied up with stock in particular kinds of companies, tech companies over the past 20 years have by and large done well.

So you can see that your money is just sort of running away.

The book I wrote just giving begins with a scene like this from our first Gilded Age with John Rockefeller, where his money manager went to him and said,

your wealth is accumulating like a mountain.

And unless you begin to give it away, it's going to eventually crush you.

And he was doing what he described of as retail charity.

You know, someone came to him and asked for $1,000.

He'd say, okay, someone else came to him.

He said, no, no, no, you need to do wholesale giving.

The wholesale giving is like set up a foundation and give away tons of money at a time instead of this like happenstance way in which people approach you asking for $100 or $1,000 because otherwise your mountain of wealth will just never get smaller.

Victoria leans hard into the narrative of her being a heroic mother who saved her daughter's life following her dramatic diagnosis.

And her story is moving.

As a mom, if my daughter were diagnosed with something like this, I would go to any lengths to help her.

And I was very happy to learn that Victoria's daughter Allie, now in her 30s, is thriving and that this work has, in fact, helped many other people.

But the lengths Victoria could go to to help Allie are nearly limitless.

I can't help but be struck by the extreme privilege inherent in the story and what it says about where we are as a society.

Medical debt is the primary factor in over 60% of personal bankruptcies, and things are not likely to get better in the wake of new legislation that could kick millions of people off their healthcare coverage.

Contrast this with Victoria Jackson's story about Allie's first symptoms and their call to their doctor, Dr.

Katya Van Hurl, who once described the care that she provides to wealthy families in an interview with W magazine about the rarefied world of private concierge medicine.

Quote, I will come to you, hold your hand, and set up an ICU in your bedroom if needed.

The only time I switched off my phone was on my wedding day 12 years ago.

Within a month of Allie's diagnosis, the family heads to the Mayo Clinic, where Victoria recounts saying to the doctors, you don't know me, but I have a checkbook and we will be working closely together.

Listen, if I had a checkbook the size of Victoria's and my daughter got a scary diagnosis, I'd leverage it too.

And it's also highly relatable to me to get involved with a cause because of a personal connection.

It's just not best understood, as Rob's work explains, as pure altruism, because while Victoria isn't getting paid for her work, she's definitely benefiting.

Across the course of several books and dozens of interviews with celebrity pals like Jay Shetty, Megan Markle, and Jamie Kern Lima, Victoria has packaged her story as not only inspirational, but as advice.

framing her story of coming up from a difficult past and selling a billion dollars of makeup, then revolutionizing medicine to save her daughter, as something that you too could do if you put your mind to it.

Victoria Jackson is very much the face and the center of the foundation, and accordingly, she's received a steady stream of praise and awards for her work, including an award from the Pope and being inducted into the Women's Hall of Fame by no less than Gloria Steinem.

I am so honored to be the person

who inducts Victoria.

It

says, I think, on the medal, for your rare and inspirational activism on behalf of women's health and entrepreneurship and your transformative work in medical research, Victoria Jackson, you are now inducted into the National Women's Hall of Fame.

Victoria understands the power of marketing and she brought her acumen to Guthy Jackson.

And I don't fault her for that.

We live in capitalism.

There are ways in which I actually greatly admire the work she's done.

It's hard to get people to care about stuff that doesn't directly impact them.

I get it.

I mean, having hundreds of millions of dollars does help, but there's no doubt that Victoria is savvy about messaging.

And throughout her dozens of interviews about her work with the Guthy Jackson Foundation, Victoria's infomercial roots show through.

She stays on brand, using phrases like, from mascara to medicine and mom on a mission as her taglines for her evolution.

It's a potent mix of philanthropy, capitalism, and hardcore second-wave empowerment feminism.

And the Guffy Jackson Foundation isn't some quiet behind-the-scenes project.

It's an exercise in power.

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Guthy Jackson's response to the information that they employed an abuser for over a decade seems largely focused on the potential damage to their reputation.

And this, too, fits with the world of big philanthropy.

One of the long-standing concerns about

philanthropic activity in which the donors are prominently involved is that philanthropy is a form of social status seeking and reputation management.

Sometimes it's reputation cleansing or, you know, whitewashing.

The best recent example of that is the Sackler family.

The Patrick Redden Keefe book about the opioid crisis and the Empire of Pain is the name of this book, tells the story of the Sackler family, which through Purdue Pharma

was responsible for a very large degree of the opioid addiction crisis,

massive efforts at getting people to prescribe it.

The Sackler family has prominently been a donor to lots of art museums, and to the extent that any ordinary person knew about the Sackler name, it was to associate them with philanthropic support of museums.

But, you know, as

Anand Girdadas, the author of Winner's Take All, puts it, I think, well,

the money making by daylight that produces harm in the world cannot be undone by philanthropic donations at moonlight.

Victoria hasn't had any public scandals throughout her lengthy business career, and she's not responsible for her husband's behavior.

But it feels worth noting that the Guthy half of the foundation, Bill Guthy, who Victoria praises for writing the majority of the checks, was the subject of some high-profile litigation during the time period that Guthy Jackson has been acting.

Seen those late-night infomercials where beauty products, they promise everything.

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Well, one of those very popular products is under fire because some consumers are claiming the Wynn hair care line, created by celebrity hairstylist Jazz Dean, makes their hair fall out.

The owner of Wynn Haircare, Bill's company Guthy Ranker, was the subject of a high-profile class-action lawsuit after tens of thousands of people, mostly women, claimed that one of its products, when cleansing conditioner, caused hair loss, scalp irritation, and other injuries.

Plaintiffs claim that the company ignored thousands of complaints, deleted negative reviews, and continued marketing the product as safe.

The case settled in 2016 for over $26 million, without Guthy Rinker admitting wrongdoing or making any changes to its products, despite a whopping 21,000 complaints to the FDA.

Now, $26 million may sound like a lot of money, but this product line had reportedly reached $100 million in sales in its second year on the market.

Wen's own website claims that the company has sold more than 40 million bottles of this specific product, which, by the way, you can still buy.

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This too was the subject of a lawsuit, which accused Guthy Ranker of enrolling customers in automatic subscription renewals without proper disclosure or consent.

This resulted in a $15.2 million class action settlement.

an additional restitution through a state-led enforcement action.

Even if Victoria is the primary representative of Guthy Jackson, the issues of trust and transparency that these lawsuits bring up feel relevant given the vulnerable population that Guthy Jackson worked with, and especially in light of their response to the information about Lisa McDaniel.

And despite everything I've said here, I don't want to discount at any point the good work that Guthy Jackson has done.

As Rob Riesch points out, rare and orphan diseases, or those that affect less than 200,000 people in the U.S., are one of the areas that nonprofits and foundations can be really effective in.

Now, private investment in pharmaceutical companies is commonplace and pharmaceutical companies do a fine job at producing new drugs.

The government, through various funding programs, also subsidizes and pays for lots of basic research in the sciences, including for

medical work as well.

However, one of the things about orphan diseases that people will often point out is that this is an especially good case for a philanthropic entity because the marketplace incentive for people in the pharmaceutical world to invest money for a new drug is to be able to sell a lot of it.

And if it's an orphan disease, the market share for any successful drug discovery is always going to be very small.

So you won't find the same market incentives at work for orphan diseases.

And so sometimes people say, well, the government should step in there and fund drug discovery or medical research on orphan diseases.

And sometimes the government does.

But of course, the way tax dollars are expended is that a majority of our elected politicians have to decide that they want to support this spending program.

And exactly because orphan diseases have a very small constituency, unless it's part of some broad-based bill where you don't really know the details, it's very unlikely that you're going to assemble a majority of all citizens, a majority of all politicians who will rally behind an orphan disease whose beneficiaries are, by definition, only a small number of people.

Enter philanthropy, where the idiosyncratic preferences of wealthy people can step in to where the market has failed and where the government has failed.

And so some people, if they give a textbooked example of where philanthropic entities might be well situated to do something important, often will point to orphan diseases.

So that's maybe something to say on behalf of this particular foundation.

In Victoria's book, The Power of Rare, A Blueprint for a Medical Revolution, she talks at length about bringing her business acumen to her work with Guthy Jackson and how this allows her to think big and to break down barriers and silos that exist in medical research.

As the title suggests, Victoria's claims about her work at Guthy Jackson go far beyond wanting to help just her daughter.

Victoria purports that unlocking the cure to NMO could help cure all autoimmune diseases and revolutionize medicine as a whole.

I don't know how valid these lofty claims are, but it's worth saying that the book is co-authored by Dr.

Michael Yehman, who is a very legitimate researcher.

And if it sounds like I'm going too hard on these folks, I want to say again that I understand how Lisa slipped through the cracks in the hiring process, but the damage is done.

And Guthy Jackson's apparent refusal to reckon with it or even warn their own community about Lisa is concerning.

Bill and Victoria have a lot of influence and power, and there's not much to hold them to account.

One of the strange things about philanthropies and philanthropic foundations is that there's no accountability structure built into the world of philanthropy, whereas there is an inner logic of accountability within the business world.

So, you know, if I create a business that tries to sell something and customers don't buy it, well, I'm going to go out of business.

I don't have any revenue.

And if you decide you want to, you know, also compete with me in the same space, your new business outfit is trying to put me out of business by out-competing me for market share.

In the philanthropic world, there are no customers and there are no competitors.

Any foundation can do whatever it wants.

And if there's another foundation doing something the same or slightly different, there's very few mergers and acquisitions within the philanthropic world because it is often about the donor and the donor's identity or interest in being seen by the public to be involved with this particular cause.

So in the world of orphan diseases, sometimes people will say, you know,

everyone has had, you know, a relative die of some relatively rare disease, or not, if not everyone, many people.

And the number of wretch people who have created a relatively small nonprofit or a foundation dedicated to this or that orphan disease is large.

And so if you scan the entire horizon, there are hundreds of relatively small organizations dedicated basically fighting the same disease.

Do they coordinate with each other?

Not really.

Do they merge together to try to pool their funds?

Not very often.

Why is that?

Because the purpose of the activity was not to coordinate or somehow maximize the investment dollars available.

It was to give tribute to the relative of theirs that had died and to try to find a way to honor them in some way, which is a totally respectable activity.

But if we thought about this as actually fighting the disease, we would almost certainly not organize the sector in this particular manner.

And so, as a general rule, then, the more that the ego and the reputation of the donor is involved in a place within philanthropy, the more worrisome it is that the unaccountability of the philanthropic

work itself is going to be some kind of of problem.

And that's all the more so if there was a problem in the money making in the first place.

If there's a stink in the money making, then the philanthropy is never going to undo that.

Let me give you one quick example just to drive this last point home.

I sometimes will say to people, here's like, you know, coming from the classroom of a philosopher, the sort of thing I would say in Moral Philosophy 101.

So, Andrea, if I come and I steal your watch that you're wearing, and I go down to the pawn shop and I sell your watch and I get a couple hundred bucks for it, and then I take those couple hundred bucks and I give it away to a super effective charity that saves people's lives, then you show up and you say, Rob, dude, you stole my watch.

And I say, but Andrea, look at the good that it has done in the world.

Without my having stolen it, like these people would not have lived.

You still have a complaint to make against me.

And

I don't have the title or the justification to say I can go around doing bad things in order to produce good things with the result of my bad activity.

Now, perhaps you're thinking, well, it's their money, Andrea.

They earned it.

They can use it as they like.

But it's not just their money, as Rob explains.

Because of the way our tax system is structured to favor the ultra-wealthy, their donations don't just move private dollars, they move public dollars as well.

So in the United States, we've chosen to have a system of incentivizing philanthropy via tax deductions.

And I want to begin

unpacking this by saying many people who defend philanthropy or philanthropists will say, philanthropy is the liberty of someone to give their own money away for whatever purpose.

If you want to bury your money in the backyard and set it on fire, that's what it means to own something or own an asset.

It's not for anyone else to say anything about.

And in certain respects, it feels natural to talk about philanthropy as everyone, if they have some money, can decide what they want to do with it.

That's what it means to be an owner and have the liberty to decide how to dispose of your assets.

But in the United States, we've decided to provide tax incentives to people to exercise a liberty they already possess.

And

functionally, what that means is, because in the U.S.

we have a progressive tax system, the more money you make, the higher your tax rate, a graduated form of taxation.

I think the top tax rate in the United States now is 39%, something in that neighborhood.

Let's call it 40% just for ease of math.

So if you are making

so much money that you're in the top tax bracket and you have a pay tax at a 40% rate,

what that means is if you give $1,000 away,

Your $1,000 are a tax deduction from what you would otherwise have as your gross or adjusted income and what you would pay tax on.

And what that cashes out to is $400 of your $1,000 donation is forgiven in your taxes, and you actually only pay $600 of the $1,000 donation.

If you're in the 10% tax bracket, meaning you're a low-income person who does not pay much in taxes, you make the same $1,000 contribution to the very same nonprofit organization producing the identical social benefit in the world.

That low-income person at the 10% tax rate pays $900 out of their own pocket and gets $100 in tax breaks.

So the work the Guthy Jackson Foundation has done all these years, including paying Lisa McDaniel to advocate for patients and educate doctors about NMO by telling the story of her son's illness and death many times over, is not just paid for by Bill and Victoria.

It's heavily subsidized by taxpayers.

So that $80 million that Victoria frequently mentions, between state and federal deductions for donors in the top tax bracket, the out-of-pocket cost could be less than half.

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There are plenty of far-ranging concerns about how large philanthropies operate in the rare disease space, especially as they can make such compelling targets for people like Lisa.

But this isn't just a philosophical exercise.

Real people have been impacted by this.

Not least of all, Colin's older sister, Michelle.

Michelle is not a person who can marshal vast amounts of personal and taxpayer dollars to her cause, or hire expensive PR teams and call on an array of celebrity besties to get attention for her story.

She's a person who wants to know what happened to her little brother.

Michelle has bravely spoken up against her abuser in order to try to protect others, not least of all her nephews, who are currently living with Lisa.

And rather than Victoria or anyone from Guthy Jackson standing up to protect the NMO community Lisa exploited, this too has landed on Michelle's shoulders.

So a couple of different things.

I guess the two most alarming for me was one that she's still contacting patients.

There are a couple of people within the organization that

have confirmed and pretty much proven to me through like screenshots and other things that they she's still trying to communicate with them.

And this is like pretty recent, you know, that she is communicating with them.

And then specifically the way it was worded to me was the more vulnerable population, like the more vulnerable type patients, the more like forgiving, you know, maybe not so great with like technology, social media, that sort of thing.

The ones, I guess, least likely to hear about the podcast is kind of the way I took it.

I'm assuming that, like, people started asking, right?

Like, they run support groups.

Mom has been very involved.

One person wrote to me, she's been like a pillar in the community.

She's very involved.

People see her and know her name weekly sometimes, you know.

Um, and I think people started asking.

And

she told some patients that she was on a PTO because my dad was in the hospital dying of cancer.

And that one, it's just, it's this weird place to be in because I'm not shocked, but I'm also a little surprised-like how you've gotten this far.

Like, you've gotten caught, you know, your cards are out.

Like, we're the information's out here, and you're still continuing to lie to that degree.

And just for clarification, my father does not have cancer, and he has not been hospitalized to my knowledge.

The fact that Lisa has created yet another fake health crisis feels audacious, if not exactly shocking.

I also wasn't shocked by Victoria's public response, but I was surprised that they didn't tell their own community.

Part of the reason I contacted them back in May was as a journalist, but it was also to warn them.

Lisa is an extremely dangerous person, and this community should have heard it from Victoria, not from me.

One thing we've heard consistently from the people who reached out is how much the NMO community created by Guthy Jackson has meant to them.

How much not only the research and treatments have had a positive impact on their lives, but the opportunity to connect with others going through the same thing.

So it's hard to understate how awful it must be to learn that one of the pillars of that community is someone like Lisa.

We sent a detailed request for comment to Guthy Jackson about their handling of this situation.

We alerted them to the fact that Lisa was continuing to reach out to patients and telling them that she was on leave to take care of her husband.

We asked if patients who'd been in contact with Lisa had been notified and if there had been any communication about the situation beyond the brief mention at Patient Day.

Further, we asked about their policies for keeping sensitive patient information private and asked what their policy was for dealing with concerns about child abuse and if they would be offering the community any resources on Munchausen by proxy abuse in light of what had happened.

Here is Victoria's response.

As we previously noted, Lisa is no longer with our organization.

She was terminated some time ago and has not been involved with us since, nor will she be at any stage in the future.

Lisa is not authorized to represent the Guthy Jackson Charitable Foundation in any way, including fundraising efforts.

The purpose of the foundation has only and always been to help patients and their loved ones.

It is absolutely heartbreaking to think that anyone would ever try to use our efforts for any other purpose.

As I think you know, we are a research-focused organization where our goal is to find cures and therapies for NMO, minimizing the impact of this terrible disease.

As such, we do not collect or store any private or protected health information, and we are actually regulatorily prohibited from doing so.

We follow all appropriate laws and industry standard best practices and are committed to continuing to do so.

Now, I clarified with the Foundation that I was asking how they ensured that employees kept records private, given the stories about Lisa sharing records willy-nilly.

And they said this.

Foundation policy prohibits the sharing of such information, specifically our employee handbook, which all employees receive and sign a commitment to follow and which Lisa signed, lays out the important obligation of maintaining confidentiality and non-disclosure of such information.

They did not respond to my other questions.

I do not want to make anybody in this community feel like it is an us versus them mentality, right?

Like I am embracing every single NMO patient, caregiver that has messaged me.

I embrace them with open arms because it is not their fault.

It is they are going through some, you know, severe betrayal trauma.

You know, every like woman friend group I've ever been in, like, we talk a lot about, and there's like memes on the internet, like, you talk a lot about a breakup and how bad a breakup is.

But when you have a best friend breakup, it is like the end of your world.

And that is what so many of these people are going through, but on like a tremendous, horrific level.

Like, it's not just a friend breakup.

Like, these are people who I remember my mom talking about.

Like, these are people who are considered to be best friends with my mother.

And it has just, yeah, the lack of response is has stuck with me.

The way things were handled at Patient Day has stuck with me.

The way, you know, I

really was not upset because I want to make it very clear.

I don't think Victoria owes me anything.

She does not owe me anything.

However, I do feel strongly, and I don't want to speak for the NMO community because they can speak for themselves, but I do feel strongly that she owes her community something.

You know, these are people who are vulnerable populations.

And when they're messaging me because they don't have a space in their own community to go to and talk about these things, there's a problem.

You know, and I don't mind.

I don't mind talking to anybody, but at the same time, you know,

I don't know how this is going to land for a lot of people, but for Victoria to get on a stage and talk about how much she cares about this community and this is her community and talk about how she has personally built this community herself.

And then to not offer them any support and to not talk about it behind closed doors and to not offer, you know, I don't expect, I don't want to be in the middle of that and and like run that for her, but they run support groups like monthly, from what I understand, and they talk about it on social media.

Where is the support group for these people that were very close to her?

Because you're not talking about one or two or three or four people.

You are talking about honestly, probably thousands of people that knew her.

You know, there, there are hundreds of doctors that were trained by her.

Tens of thousands, according to Kathy Jackson.

Tens of thousands and tens of thousands.

Educated by Lisa McDaniel.

Yeah.

Yeah.

And you just can't, it's just, you know, I tried really hard for the past few weeks when everything first started coming out to give her the benefit of the doubt.

Because I understand, like at the end of the day, Victoria is human.

She probably had to really grapple with all of this in her own way.

And she deserved that time in that space.

But her community that she claims and her community that she, you know, talks about building.

They deserve some answers.

You know, if it were, if I knew that this woman had my personal medical records, I would, I would be beside myself, you know, and much less, and not just like individuals.

You're not just talking about adults, you're also talking about children.

You know, at the end of it all, this community deserves more.

And if it were my medical records in this woman's hand, and I knew that she had had a hand in them, and I knew that, you know, again, she's still reaching out to patients.

You know, she, her personal life and her work life were very meshed.

She had her personal, her patients' information on her personal cell phone.

They were not separated.

You know, they were not behind some kind of lock and key.

Like she has these patients' cell phone numbers.

Like she has access to these patients even after being fired because they were already in her personal cell phone.

And there's just, there's no boundaries and there's no, you know, it feels like there's no accountability.

But I tried really hard to be

understanding.

And there were, there were two different things that kind of like hit me in a way.

And I just haven't been able to get over them.

And one was the way she sort of kind of has this weird addressing it at patient day, but then there's nothing substantial said.

And, you know, just this kind of glaze over it.

She never mentions my mother by name.

She says a former employee.

She never like talks about it.

And then she directly looks at that crowd and says,

but you're not here to talk about a podcast.

As if she is kind of telling them like, hey guys, that's not what we're here for.

Let's not talk about it.

And so, that one, I was like, wow, like, I feel like she could have taken that moment and done so much more with it.

Because I do know there are patients and there are people within the community that were hoping she would address it at Patient Day that had kind of written me that.

And then the second thing that I just cannot get past is the way she mentions my mother by name in her book.

And when

you have that kind of confidence where you list this person by name in the book, you cannot go forward and pretend like you didn't know them.

That's not how this works.

With the exception of the brief mention that Lisa is no longer working for Guthy Jackson in their staffing announcement, Lisa and Colin have disappeared from Guthy Jackson's online presence.

But as Michelle points out, Victoria includes Lisa and Colin's story in her book, The Power of Rare, where she also includes a shout out to Lisa in the acknowledgements, saying, extra love to my favorite moms.

Colin's life and death are part of Guthy Jackson's story, and that that doesn't stop being true now that the story is more complicated.

And this is all worth looking at, because if $80 million and access to near infinite resources can't protect an organization from someone like Lisa, what can?

And how do the ways in which we look at disease and disability open the door for people like Lisa and allow them to hide in plain sight?

It's a cure rather than extending life and making it more tolerable, right?

And I think that kind of attitude makes it an easy segue for Munchausen perpetrators, because then the choices are death or a cure.

It's kind of this dichotomy instead of saying, how do we extend life and extend quality of life?

Because the Munchausen perpetrator often says, well, if we can't get a cure, then they're going to die.

That's next time on Nobody Should Believe Me.

Nobody Should Believe Me is written and hosted by me, Andrea Dunlop.

Our co-executive producer is Mariah Gossett and our assistant editor is Greta Stromquist.

Fact-checking by Erin Ajayi, music provided by Blue Dot Sessions, and administrative support from Nola Carmouche.

Special thanks this week to Rob Reisch.

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