Healthcare in Crisis: The Truth About PBMs with Dr. Madelaine Feldman

Dr. Mattie Feldman, rheumatologist and healthcare policy expert, exposes how Pharmacy Benefit Managers have evolved from administrative entities into powerful forces that control medication access, often prioritizing profits over patients.

• Pharmacy Benefit Managers (PBMs) originally handled prescription coverage but now control what medications doctors can prescribe and patients can access
• The "big three" PBMs—CVS Caremark, OptumRx, and Express Scripts—now control 80-85% of all prescriptions in the United States
• PBMs often prefer higher-priced medications because they generate larger rebates, contributing to rising drug costs
• Vertical integration has created conflicts of interest where the same companies own insurance plans, PBMs, specialty pharmacies, and sometimes even drug manufacturing
• Utilization management tools like step therapy and prior authorizations have become barriers between doctors and patients
• PBMs force patients to use mail-order specialty pharmacies that often provide inferior care compared to community specialty pharmacies
• Legislators are working on bipartisan bills like "People Before Monopolies" that would require PBMs to divest from pharmacy ownership
• Patient stories and advocacy are crucial for creating meaningful change in the healthcare system

Share your pharmacy access or medication challenges with us by emailing [e-mail] to help drive policy change.

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Episode Transcript

Speaker 1 (00:04):
Welcome to the Hope Podcast.
My name is Jonathan James and Iam so thankful that you're here
to listen today abouthealthcare initiatives that are
so important to our community ofpeople living with bleeding
disorders.
I'm really thankful for ourepisode sponsor today, genentech
, for sponsoring this moment, aswell as many others, to bring
more educational content to helpyou understand more about
bleeding disorders and theissues that matter most to us.

(00:26):
Today.
I am really excited to bring afriend of mine to the
conversation to talk a littlebit more about PBM reform,
specifically what specialtypharmacies and the limitations
thereof accessing thosepharmacies has really meant to
our community and many otherswho are dependent upon high-cost
medications and the challengesthat we've experienced with

(00:46):
accessing those medications on aregular basis.
Dr Maddie Feldman, it is greatto see you today.
Thank you so much for joiningme with the Hope Podcast.

Speaker 2 (00:54):
Thank you for having me.
I'm really excited to be here.

Speaker 1 (00:56):
Well, I have to say, we met each other at an event
that we were both mutuallyspeaking at and I heard your
presentation and was justfloored.
I was blown away.
We've had a lot of pain pointsas it pertains to specialty
pharmacy access, through some ofthis PBM issues that we've
experienced, the verticalintegration, and when I heard
your presentation I just was.
I really had not heard you speakbefore and in that moment I

(01:18):
just was, so I couldn't takenotes fast enough and I was like
writing frivolously and justreally just couldn't keep track
of it all.
And I know I came up and spoketo you and then we've just
stayed in touch ever since.
So we're almost two years ago,and so it's been just beautiful
time to be able to really learnmore from you, and you've been a
teacher to me, even if maybe ithasn't been positioned that way
.
You've really helped meunderstand even more about the

(01:40):
very thing that's so importantto us as a community.
So really thank you for all theefforts that you've made so far
to really influence change inpolicy and continue to really be
a voice of not only reason buta voice of expertise
specifically dealing with thesetypes of issues.
It's so important the work thatyou've done and we really

(02:01):
appreciate it.

Speaker 2 (02:02):
Well, thank you, thank you.
I look at it as a voice ofmaybe, hopefully, common sense
and a lot of passion behind it,so true.

Speaker 1 (02:10):
Well, a lot of people who are listening today
probably haven't heard from ouraudience, at least from you, in
the past, and so I'd love totalk a little bit about your
background as a rheumatologistand also your work as a
physician treating in Louisiana,right here in our own backyard.
So tell us a little bit abouthow you got started, why you
became a physician to begin withand kind of what your
background is and what you'redoing now.

Speaker 2 (02:29):
So well as your listeners may know, a
rheumatologist takes care ofautoimmune diseases,
particularly ones that manifestwith arthritis and maybe some
skin problems.
But we overlap with autoimmunediseases both in neurology and
gastroenterology, so we do havethe run the gamut, but again
it's chronic disease.
How I ended up in medicalschool is a different story

(02:51):
altogether.
I went into college as atheater major and, yes, and
actually I finished as a theaterand biology major.

Speaker 1 (03:00):
So at the time.

Speaker 2 (03:02):
You know, my brother was a few years older than I was
and he was the one that wasgoing to be the doctor in the
family you know thevaledictorian, every father's
you know child that was going tobe the doctor to school
undergrad at Newcomb, which backthen was the Women's College of

(03:27):
Tulane.
So I would take her to herappointments and I don't know if
you know, but back then theydidn't want to give cancer
patients pain medicine, sleepingmedicine, for fear they'd get
addicted.
So when I'd take her and I'dsee the condition she was in and
I don't blame the physicians,but I just sort of felt like you
know, I'm pretty smart, I'vealways gotten straight A's.
You know, if my brother can dosomething like that, I could

(03:50):
actually be a doctor.
I mean, I know it soundsbizarre, but at that point I
started doing my pre-medrequirements and here I am today
.

Speaker 1 (03:59):
Wow, that's amazing.
What an incredible journey.

Speaker 2 (04:02):
It has been, and I think you know everyone who
becomes passionate about anissue.
There's usually some connection.
You know it could be a familyconnection, it could be a friend
connection, it could be a fearbecause something runs in your
family, and so you know therewas that initial family
connection right there.

Speaker 1 (04:23):
I love that.
It's part of the reason,probably why you're so
empathetic and you really aredrawn into it.
For those reasons I take a lotof heart to that.
I didn't know that part of yourstory, but learning that today
I was actually a music major incollege, went to school for
music education and later neededa real job to make actual
living when I got married andstarted having kids and realized

(04:44):
that so I got into finance,which is also kind of
mathematical I guess, with music.
But and then never in a millionyears thought I'd be doing what
I am today, with policy workand doing so much for patient
advocacy and financialassistance.
But having been born withhemophilia, grew up through so
many ups and downs and saw thecommunity go through so much
that I was always advocatingwhere I could in my spare time

(05:06):
and really just, you know somethings.
You know you try to choose it,but some things choose you and I
feel like that way and itsounds like that was the same
with you.

Speaker 2 (05:16):
Yeah, and I think I may have told you when we first
talked that you know I had amedical school friend of mine
who had hemophilia and this wasback in the day and basically he
was getting factor VIII and hegot HIV and passed away during
medical school.
So I have a real soft spot inmy heart for hemophiliacs and

(05:39):
the treatment and everythingWell it was meant to be.
I knew we were related somehowso that's awesome.

Speaker 1 (05:46):
Well, I know one of the things that you've been a
driving force for in so much ofjust your work and your passion
has been dealing with high-costmedications and trying to get
through the hurdles.
I think in rheumatology there'sa lot of challenges that we have
been sort of blessed inhemophilia not to have to deal
with some of the things dealingwith, you know, biosimilars and
generic drugs and then also someof the step therapy problems

(06:08):
and other issues that we've beenvery, very keeping, keeping a
close eye on and evenparticipating with a lot of the,
you know, legislative workthat's been done in some of
those categories, just becausewe know that we're we're really
a half a step away from thatreally happening to us too, and
and so so it's super important.
But one of the things that I'mjust really we've been obviously

(06:34):
very outspoken about how muchvertical integration has really
harmed so much of patients'access, especially in rural
communities, getting access toso much of the education, the
supplies, making certain thatthey get their medications in a
educated format, where it's notsitting on the porch getting hot
and not being able to you know,and going to waste.
So much abuse really that'shappened in the space when you

(06:56):
have these sort of big boxstores, if you will, that are
sort of shipping from a fardistance away to your medication
.
So those things are near anddear to our heart as a community
and you just have so muchunderstanding and context about
the back end of what thesethings are.
But I kind of want to startfrom like a really super 30,000
foot view, high levelperspective.
Some listeners today may noteven know what PBM stands for or

(07:19):
what it means exactly, may havebeen impacted but don't know
the details.
So if you could, just to helpall of us to understand a little
bit more of what is a PBM and alittle bit of context of how
that came about, Well, I'm oldenough to remember before PBMs
really became in vogue I wentout into practice, let's just

(07:40):
say around 1990.

Speaker 2 (07:43):
And that is the sort of like right in the beginning
of the burgeoning of biologicsto treat rheumatoid arthritis.
You know, we had there for awhile.
We had, you know, back in the50s and 60s, was maybe steroids
and aspirin, and then wegradually got methotrexate.
And then in the 90s there werelots of other drugs that were
now becoming expensive.

(08:03):
We did have another smallmolecule called Areva and it was
$400 a month and we just wentoh my God, that is so expensive.
And now $400 a month seems likenothing.
So what happened was we wereused to having insurance
companies cover the doctor'soffice, surgeries, visits,
outpatient and inpatient, andthen all of a sudden, as drugs

(08:26):
became more expensive, theydidn't want to handle that.
So they started getting theseentities started coming about.
That were pharmacy benefitmanagers, meaning we will handle
those prescriptions, we willhandle the insurance for them,
we will pay for and basicallynow we'll have a pharmacy
benefit that can be associatedwith a medical benefit.

(08:49):
But generally the pharmacybenefit was a separate company
from the medical benefit.
You'd have Blue Cross over hereand then Express Grips, which
was the pharmacy benefit.
They weren't owned by the samecompany.
So then through the 90s we had,at least in the rheumatology
space, a number of biologicsthat came to market, both the
kind that are given in theprovider office through the vein

(09:11):
and then also ones that peoplewould inject themselves.
And they were, you know, whenthey came to the market it was,
like you know, $1,000 a month.
Oh my God.
Well, that same drug now is$9,000 a month.
So anyway, so as drugs becamemore and more expensive, they
went to the pharmacy benefitfolks to say you know, we really
think you need to create a listof drugs that will be covered.

(09:35):
That list of drugs that will becovered is called the formulary
.
So, if you have insurance, youknow you have to go to your
formulary because those are thedrugs that are covered.
When I go and testify beforelegislators I keep hearing we
need more competition.
Let me tell you if you're amanufacturer and you make an
expensive drug, if it's not onthe formulary no one and I mean

(09:59):
no one will get your drug,unless, of course, you get it
through for free or you knowit's given to you by the
manufacturer.
So the competition to be onthat list of drugs to be covered
is fierce and let's just saythe pharmacy benefit managers
have taken advantage of thatcompetition and what happened
was the manufacturers were notbidding on the lowest price,

(10:30):
they were bidding on the highestkickback.
So whoever would give the mostmoney to the PBM, they would get
the place on the formulary.

Speaker 1 (10:36):
Pay to play.

Speaker 2 (10:37):
Something happened in the 90s that made that possible
.
Normally, if you're dealingwith any kind of health thing,
you can't give kickbacks becausethere's something called an
anti-kickback statute.
Well, the federal government,in all of its wisdom, said why
don't we give health insurancecompanies and pharmacy benefit
managers safe harbor, like a getout of jail free card from the

(11:00):
anti-kickback statute?
Consequently, the manufacturerscould give as much kickback as
they wanted and it wasn'tagainst the law.
So now we're moving into theearly 2000s and you want to be
preferred and another drug wantsto be preferred.
Well, I'm $1,000 a month andI'll give you a rebate of 50%

(11:24):
every time you fill that script.
And the other one they don'tknow, but they're kind of
surmising.
Well, I'm in competition, Ineed to give them more.
That drug was $1,000 a month,my competition last year.
Okay, so I'm going to go to thePBM with a $2,000 a month drug
and I'll give them 50% kickback.
So which drug are they going topick?

(11:47):
The more expensive.
Now they call that saving moremoney and that's sort of like,
you know, if I wanted to go buya dress and there's a hundred
dollar dress and it's on salefor 50% off, and the exact same
dress maybe is $500 and it's 50%off and maybe I like that one a
little bit better, I'm going tothis is going to sound very

(12:09):
sexist, but I'm going to buy the$500 one and tell my husband
look, I saved twice as muchmoney on this one.
I don't talk about what itcosts, I talk about what I saved
.
And that's what the PPMs do.
They talk about saving.
So what has happened over theyears is these rebate
percentages have gotten higherand higher and then the drug

(12:31):
companies raise the price oftheir drug in order to cover, I
mean, sometimes they give 80,90% back to the PBM and the PBM
just touts the savings.
Look at what we've saved thecountry and the PBM just touts
the savings.
Look at what we've saved thecountry.
So, consequently, over theyears, drug prices have gone up.
Pbms became money-makingmachines and then that's how we

(12:55):
got to the vertical integration.
All the medical insurancecompanies everybody wanted to
own a PBM because they made somuch money.
They did no research, theydidn't even take control of any
drugs.
They just set up the formulary,which tells the doctor what
drug they can prescribe, tellsthem when they can prescribe it,
tells the patient how muchthey're going to pay and where

(13:17):
they can pick it up from.
So you know, unitedhealthcaregot into the PBM business pretty
early on, when they bought acompany called Catalyst and then
that sort of turned intoOptumRx, which was their PBM.
Then we have CVS Health.
They were a PBM, cvs Caremarkwas a PBM and they in 2019,

(13:44):
managed to cobble together like$80 or $90 billion to buy Aetna.
So now they had their owninsurance company.
And then, finally, there was alittle Express Script sitting
out there and I think it was2017 or 18.
They were number 16 or 17 onthe Fortune 500.
All they did was makeformularies and decide what,
when, where and how much forpatients they would get it, and

(14:06):
they were number 17.
How do you make that much moneywhen you don't do anything else
?
So Cigna said hmm, I think weneed to own a PBM too.
So they bought Express Grips at2019.
And since then we have.
That's what the verticalintegration is.
I look at it as you've got thejudge, the jury and the
executioner all in the samecompany.

(14:27):
So you've got your medicalinsurance, you've got your
pharmacy insurance.
Now they all have their ownspecialty pharmacies.
Now some of them have banks,they have data companies, they
have you name it, andUnitedHealthcare owns more
doctors than any other companyin the in the country.

Speaker 1 (14:49):
So that's probably made America great has been this
sense of capitalism thatactually built the country and
in in many industries.
What's made American healthcareso terrible is actually the

(15:13):
same thing.
It's the capitalistic nature ofwhat's driven this.
I actually um was fortunateenough to be able to do a
congressional briefing last yearon the topic of um specifically
, we were talking about sort ofPBM reform and on the topic of,
specifically, we were talkingabout sort of PBM reform and
what the context of this was.
But I actually highlighted thetop three drug manufacturers in
our country have actually, overthe last five years, have lost

(15:36):
money.
They actually have not made agross net return, if you will,
but the top three PBMs have madewell over 100% return in many
cases over the last five years.
And so there is this debateabout, like, well, high cost
medications.
This is, you know, high costdrugs.
This is where the problem is.

(15:57):
But if you look at, like theKaiser Family Foundation results
of their whole healthcareexpenditures in the United
States, roughly only 13% oftotal healthcare costs is
actually spent on pharmaceuticalmedications specifically, but
whereas hospitalization andinpatient and outpatient care is
nearly half of the totalexpenditure.

(16:18):
So when you start talking aboutthings that are really grossly
making all this wild amounts ofmoney and costs.
It's actually the middlementhat's caused a lot of the
problem in this space, and yetit's still not the biggest
problem when you compare it tohospitalization and some of the
other expenses.
So it's super interesting to methat these sort of almost

(16:38):
empires have been built asmiddlemen in a way that have
been predominantly.
No wonder the insurancecompanies wanted to purchase
them and also force place their,their members to actually have
to use their pharmacies wasbecause they were actually that
was the only piece of thebusiness that was actually
probably even really thatprofitable.
Yeah, and it was veryprofitable, Right.

Speaker 2 (16:58):
PBMs are very profitable.
You know the way I look at itis in terms of drug pricing.
You know there are no innocents.
I'm not shifting the blame frompharmaceutical manufacturers to
PBMs.
I'm sharing the blame.
Everyone knows they point theirfingers at each other.
The PBM says they set theprices and the manufacturer says
but they make us raise theprices.

(17:19):
And both of those are true.
And then what the PBMs havedone in order to keep the
formulary profitable, they usewhat are known as utilization
management tools.
It's three words that to mostpeople it's like this and in

(17:39):
fact, when I first heard theterm in the early 2000s, I went
I don't care, I'm busy takingsame thing with the acronym PBM
and even specialty pharmacy, allof that.
I said I'm busy taking care ofsick patients, I don't care
about all these acronyms.
Well then, next thing, you know, the PBM comes into my exam
room and comes in between me andmy patient because I would say,

(18:02):
okay, you know, we've come to adiagnosis.
It looks like you've gotrheumatoid arthritis.
I think this would be.
Let's talk about your lifestyle, let's talk about the rest of
your medical history and figureout what would be the best drug
for you.
And we'd come up with it.
And then I'd go to my biologiccoordinator.
We didn't call him back thenand he'd go oh no, the insurance

(18:25):
company won't pay for that.
So then I'd have to go backinto the exam room and say
because I just built it up, thisis going to be a great drug.
It's safe, it's going to workfast.
Da, da, da, da da.
And then I'd have to go back inand say, oh, I'm sorry, I can't
give you that drug.
Your insurance wants you totake these two drugs first, and
that's known as step therapy, orfail first.

(18:51):
And initially, when that cameout, it was fine because it
would ask patients to takegeneric drugs and that made
sense.
But in rheumatoid arthritis andlupus, my patients have already
gone through those.
And then I would have to givethe biologic, for example, the
expensive drug that they mademore money on.
And then the very next year thecompetitor would give them more

(19:12):
money, so I'd have to switch mypatients over to a different
biologic, and they can do thisup to three times a year.
So what started off as amoney-making entity has turned
into a.
Now they come in between thedoctor and the patient.
They make the medical decisionsbut have no liability for the

(19:34):
choices.
And they say doctor, we're nottelling you what drug you can
prescribe.
You can prescribe whatever youwant.
We're just telling you what wewill pay for you want.
We're just telling you what wewill pay for.
Well, when drugs are anywherefrom, I mean, you probably know
the data anything over $150,.

Speaker 1 (19:53):
People just don't even show up at the drugstore.
It's 85% failure rate at thepoint of sale if they are more
than $100.
There you go, it's wild howmany people, just absolutely
just as soon as they hear that,because people, you know, it's a
statistic, I think from one ofthe main news networks actually
I think CNBC reported that theaverage American today cannot
afford a $400 emergency bill.

(20:13):
Especially consideringinflation now and so many other
things, People are on a veryvulnerable stretch financially.

Speaker 2 (20:21):
So essentially, yes, they are determining what I can
prescribe Because the patient.
if they can't afford it, they'renot going to take it.
So now we've run into, you know, the step therapy, and it used
to be prior authorizations,which is another thing that you
know.
We have prior auths for imaging, prior auths for surgery, prior
auths for drugs as well, andagain it was to make sure that

(20:46):
the doctor, I suppose, is notgiving a drug that's maybe not
indicated or something like that, but it's turned out to.
I mean, I have, I'm asked forprior authorizations for generic
drugs like prednisone.
Yeah, so they have really comeinto-.

Speaker 1 (21:02):
Just very inexpensive .

Speaker 2 (21:03):
Very inexpensive.
They really have come into thedoctor's office and now, because
they own their own pharmacies.
Now we knew CVS already had itsown pharmacies, but now they
all own their own specialtypharmacy and what they do is
they make the patients fill alltheir expensive medicines at the

(21:23):
specialty pharmacy.
And so I mean, I've heardhorror stories and the patients
can't go where they want or elsethey won't pay for it.
They use the cost of the drugas a cudgel to force patients
into taking the drugs that makethem the most money and send
them to the pharmacies wherethey make the most money.
Wow, and I've been complainingabout this for I don't know,

(21:46):
maybe 10 years.
My son's an attorney and to getback to exactly what you said,
he goes, mom.
All three of those companiesare publicly traded companies.
Their fiduciary responsibilityis to their shareholder, not to
your patient.

Speaker 1 (22:01):
That's right.

Speaker 2 (22:02):
So I think as a country and I'm a capitalist,
free market person we have todecide.
Do we want the health decisionsmade by companies that are
mainly concerned with the stockprice of their company, because
that really is what determineswhat I can give.

Speaker 1 (22:25):
It's whatever will keep their shareholders happy If
I'm not mistaken, I've beentold that something over 50, I
want to say it's 52% of totalmedication expenditures globally
come out of the United States.
And so if they can't make adrug sell well in the United
States, they're pretty much notgoing to invest in it a whole

(22:46):
lot to sell it globally either.
And I think that it's reallyfascinating when you look at how
important the US is to the.
There's a lot I mean all of theglobal companies sell here, but
they have to go through theprocess of extremely
extraordinarily expensiveprocess, you know, to get a
medication to market to beginwith, and much of that is what

(23:08):
compensates them for theresearch and development, for
new medications and so on.
And so it is an important senseof linear progression in one
sense.
And yet in another sense, theaccess issues to the patient,
and we see so many people thatcannot get to a specialist like
you that live in, you know, inour state, like Shreveport for
instance, or they have to drivefive, six, seven hours.

(23:29):
They're already.
The reason why they can't affordthat four or $500 at the point
of sale is because when they'retrying to get their prescription
filled is because they got todrive five hours and already
spent two or $300 just to getand those things are barriers
that actually prohibit peoplefrom actually getting the
medication to actually solvetheir problems intrinsically.

(23:50):
And that disruption exactly whatwe say this all the time is
that these types of decisionsand the formulary basis are what
is disrupting the sanctity ofthe patient-doctor relationship.
And we have so many laws and wehave so many, there's so many
restrictions and so manyliabilities that you're under
under your licensure thatactually demand of you to make
certain that you are.

(24:10):
There's a certain sense ofagain, sanctity is probably the
best word that I know how todemise.
There is this idea that youhave gone through this very
personalized care with yourpatient, determined what the
best course of action is, andyou cannot even prescribe the
very thing that you know is theright decision for this patient
based upon the needs that you'veassessed.

(24:31):
And it's all because of moneyhas gotten in the way of it.

Speaker 2 (24:35):
Absolutely, it's profit over patients, it's
ledgers over lives.
I really like that because theylook at the ledger and we've
recently had some terribleexamples of formularies changing
, patients not being notifiedthe recent, you know, over the
last year or so.

(24:55):
You know the young man going topick up his asthma inhaler and
they just either moved it to ahigher tier or excluded it from
the formulary and now it wouldcost him $250.
He couldn't afford it and hepassed away over the next couple
of days from the formulary.
And now it would cost him $250.
He couldn't afford it and hepassed away over the next couple
days from status asthmaticus.

(25:16):
He couldn't get out of theasthma attack.
So these decisions are not justminor decisions.
They actually have lives thatare associated with them and I
just look at it as the insurancecompanies just hope that well,
it's collateral damage and it'sgoing to be yesterday's news.
Well, I don't forget about it,it's not yesterday's news to me.

Speaker 1 (25:35):
Neither does his parents, neither does his
sisters and his brothers and allof his siblings.

Speaker 2 (25:39):
The entire community.
We're shocked.
And this happens more often thanyou would think, patients
getting denied, particularly inthe GI space.
I've seen a really horriblecase where a young man with an
inflammatory bowel disease theyfinally found and he had to be
on two biologics and theyactually had a peer-to-peer that

(26:01):
agreed with them but theinsurance company buried it and
it wasn't until the parentseventually had to sue the
insurance company that theirattorneys founded on discovery.
So they actually the insurancecompany actually buried it.
You know it's terrible thatI've become, you know, so
jaundiced when it comes toinsurance companies, but you

(26:25):
know.
But again, as my son said,their fiduciary duty is to their
shareholders, not to mypatients.

Speaker 1 (26:34):
And so many other types of insurance too.
I think that this is somethingthat's striking for a lot of
folks to understand is that ifyou had, you know, these
financial assistance barriersand there's programs and safety
net programs like we offer andothers offer, that can help with
some of these out-of-pocketexpenses, but there have been so
many antics that they haveactually introduced, like the

(26:55):
accumulator adjuster, themaximizer, afps, all of these
different types of things thatthey've done to sort of
interrupt or disrupt the abilityfor patients to access these
third-party you know assistanceprograms.
One of the things that we foundwas really terrible I you know
had shared with you before thatI participated in the United for
Charitable Assistance Coalitionas the vice chair for many

(27:17):
years to try to advocate forthird-party assistance
preclusions that incurred thatcame from really a frivolous CMS
policy.
It really wasn't even a mandate,it was just a memo that they
sent out that said you don'thave to be able to accept
anything except for these threeinstitutions, which were
government organizedinstitutions, but essentially it

(27:39):
prohibited people from evengetting some of the third party
assistance that they were ableto get at the time and literally
we saw people living in thirdworld like country sort of
conditions that were dependentupon these medications because
they were delayed on and on andon.
We just did the AFP data survey.
We found that the averagedelayed period of time was 68
days for somebody that has ableeding disorder specifically

(28:00):
and I would assume the samewould be in rheumatology is that
it not only can put people in a, it's not just an inconvenience
, it's actually putting them inlife-threatening circumstances
that at worst it can obviouslybe early mortality, but at best
sometimes it's actually still apermanently disabling,
unrecoverable circumstance thatcan occur because they could not

(28:23):
access their medications.
And this is all because of theantics, again, that these
insurance companies, pbms andall of the system has really
made to prohibit high-costmedications from being able to
be deliverable.

Speaker 2 (28:34):
I mean what you were talking about with the
accumulators for the longestcopay cards, anything, whether
the patient got it out of theirown pocket.
They had a rich uncle, theyfound it on the ground or they
had a copay card from themanufacturer.
It always counted towards theirdeductible and, if you think
about it, these are patientswith chronic illnesses that are

(28:54):
on expensive drugs, that oftenhave other comorbidities that
require certain procedures,require other medications, and
they would count on thatdeductible being covered by the
copay card.
Right, and you know.

Speaker 1 (29:09):
Or the rich uncle.
Yeah or the rich uncle Rightright.

Speaker 2 (29:11):
Well, the PBMs would always complain oh, it's
enticing patients to take a moreexpensive.
Let me tell you, my rheumatoidlupus psoriatic patients would
love to not have to take anexpensive medicine.
They would love if it could becovered by something as simple
as just some methotrexate everyweek.
So as soon as they found outthat that argument wasn't

(29:32):
working, I think they sat aroundand thought well, okay, I guess
we're stuck with copay cards.
How can we make money on it?
Oh, I know, let's not count thecopay card towards the
patient's deductible.
So not only will we get themoney from the copay card when
the patient runs out of copaycard in June and they come to
pick up their drug I'm sorry,you owe a thousand dollars for

(29:53):
your drug now.
Well, wait a minute, mydeductible has been covered
already with the oh, I'm sorry,no, we don't count it towards
your deductible.
That all occurred around 2017.
They act as though that's howit's always been.
No, that's not how it's alwaysbeen.
This is something new that'sbeen injected into the drug

(30:13):
supply chain I had when I firstgave a lecture on this at the
American College of Rheumatology.
A young man who was at Yaledoing his fellowship came up to
me afterwards and said I'mreally interested in this.
It was 2018, 2019.
And he said can I email withyou to find out more about this?
And I said sure.
So he says the chief medicaldirector of one of the largest

(30:38):
PBMs in the country is coming toYale to speak to our section on
what they're doing.
And I said he says is there anyquestions you want me to ask?
And I said yes, ask them ifthey're going to implement an
accumulator in their drugbenefits and, if so, why?
Well, he wrote me back and hesaid yes, they are.

(31:01):
And the reason why is thatthose patients.
Anytime you start with thosepatients, you know it's going to
go downhill.

Speaker 1 (31:09):
Right.

Speaker 2 (31:10):
They pay so little in premium to have these high
deductible plans.
Essentially, they don't deserveto have their deductible
covered.
Now, since when do insurancecompanies get to decide who
deserves what?
Insurance companies get todecide who deserves what?
Now, I'm sure that didn't goover well, and that's sort of

(31:31):
what he wrote me in the email.
They use that excuse they don'thave enough skin in the game.
Well, mr Chief Medical Director, I'd like you to have one of
these diseases and tell me ifyou think you have enough skin
in the game.
It just, I mean, it chokes meup.
I mean that is discriminationat its, at its worst, right,
that's so true.

Speaker 1 (31:53):
I want to talk a little bit about, you know,
there's there's a lot of youknow, in Medicaid, medicare,
there's some anti-steering laws.
That's already there in place.
But we're seeing steeringhappen every day in some ways,
especially on the commercialside, kind of the wild West out
there, right, and it's funnybecause the marketplace plans
kind of straddle a fence there alittle bit.

(32:13):
Is it public policy?
Is it private?
It depends on if there's asubsidy and there's some
policies that are being sort ofstretched to be able to bring
new definitions to the market.
But you have had also theability to actually testify

(32:34):
before some of these committeesand subcommittees on,
specifically as this sort of PBMcurtain and the layers of these
things have been sort of.
The layers have been pulledback and Congress over the last
two or three years has beenexploring what is the problem
and trying to wrap their armsaround it.
And everyone we've talked tostill is like it's so complex
that you know.
We've talked about DianeHarshberger, for instance, who

(32:56):
kind of ran her old campaign onthe idea that they would do this
, and of course Buddy Carter inthe Senate now, who's been a big
champion of these things aswell, but there are definitely
people who understand the issuesand the complications and that
change needs to occur.
I think a lot of the focus hasbeen on this transparency issue
and I don't know thattransparency alone solves the

(33:16):
problems.
But again, this hiding thatgoes on every day to sort of
like.
These tactics are intentionaland we are living in communities
today at least for myself withhemophilia, but others in
rheumatology as well and otherhigh-cost medication zones are
actually being targeted and itis intentional discrimination
and an attempt to suppress theuse or access to medications in

(33:36):
these spaces.
But with that and this pullingback of the curtain, it seems to
be that there's still such acloud of mystery and the big
three you mentioned earlierobviously want to suppress that.
I think that there were somepretty substantial things that
came out where they were, youknow, caught in contempt even
you know of some of the hearingsthat went on there.
But just talk a little bitabout your experience in terms

(33:58):
of what you've been doing in thepolicy work that you've been
doing and also like yourexperience in the hearings
themselves and kind of what theresponse has been from that.

Speaker 2 (34:07):
Yeah, so the idea of transparency is great.
The problem is the big three,and if we pull out the big three
PPMs, it's CVS, caremark,optumrx and Express Scripts.
Those are the big three andthey handle about 80% to 85% of
all prescriptions in the UnitedStates.
Well, they're not dumb.

(34:28):
I think they could see thehandwriting on the wall with
rebates.
A long time ago I becameinterested in rebates around 20,
I don't know, maybe 2012, 13,14, 15, somewhere in there.
And that was the heyday.
I mean, it was up until about2018, 2019, rebates were
everything.

(34:49):
And one of the only times that Iactually testified it was the
Health Subcommittee of Energyand Commerce, and sitting next
to me was one of therepresentatives from the trade
group for PBMs, and at the time,anna Eshoo from California was
chair of this particularcommittee and she said to the
woman who represented PBMs DrFeldman said PBMs choose higher

(35:10):
priced drugs on the formulary,oftentimes over lower priced
drugs, because they make moremoney on them.
Is that true?
And she goes no, we pick thelowest net cost drugs.
And I didn't know that I couldpush the button and say
something.
So I didn't.
And she said but are theyhigher priced?
And she goes well, they'relowest net cost.
And I finally just pushed thebutton and I said but the price

(35:32):
is actually higher.
And as she finally just lookedat her and said, okay, so I
don't want to know if they'relower cost, I want to know, are
they higher priced?
And the woman had to say, yes.
Now this is at a time whereeverybody's screaming about we
have a drug pricing crisis inthe US, and that statement
should have just rocked thatcommittee and said wait a minute

(35:53):
, we have companies that pickhigher-priced drugs and here
we're complaining about higherprice.
It was like this.
It just sort of went over theirhead.
Well, by then they realized ifwe have to start becoming
transparent with rebates andhave to start, you know, we need
to somehow figure out a waythat transparency is let's just

(36:15):
make a bigger black box.
If they can see inside thisblack box, let's make a bigger
black box.
So they did did was theystarted subsidiaries.
That would aggravate, aggravate, yes, it aggravates me.
Aggregate all of the rebatesfrom various manufacturers, not
just one for this one drug,because God forbid anybody finds

(36:37):
out that.
Oh my God, it's so proprietary.
And they're rebate aggregators.
And sure enough, expressScripts has one in Switzerland,
another one has one in Ireland,another one does have one in the
US, but it hides it.
So their CEOs can sit in frontof Congress and say we pass 90
to 95% of all rebates back tothe plan sponsor or our clients,

(37:02):
but they forget to say we passback what we.
They say what we get meaning,but the rest of it's being
hidden offshore.
So then so okay, so thattransparency, yes, we can see
now many states are passingtransparency things, but it
doesn't tell us really where alot of the rebates are.
So they started then thinkingwell, okay, we need to get

(37:24):
another source of income.
So they've reclassified themall as fees.
Interestingly enough, the feesare also based on a percent of
the list price of the drug.

Speaker 1 (37:33):
Oh, my God.

Speaker 2 (37:35):
Which guarantees an increase, which guarantees if a
drug company comes, well, youknow they may try to find some
transparency on that.
So let's figure out another waywe can make money.
I know let's mandate all of ourpatients go through our
specialty pharmacy and there'slike four or five criteria that

(37:57):
makes a drug special, but youcan use just one of them and
that is that it's expensive andbecause the PBM sets the price
that the specialty pharmacycharges, they just make it over
$500 a month.
It's automatically special andnow you have to get it through
our specialty pharmacy and thetransparency.

(38:18):
Finally, there was a little bitof transparency on that and a
couple of states found out thattheir Medicaid system was being
taken totally by the PBM thatwas controlling, and especially
pharmacy controlling, medicaid.
They would get a drug that, perpill, maybe cost them $12 per
pill, turn around and charge thestate $250 per pill.

(38:41):
And that didn't start becomingtransparent until 2021, well,
maybe 21, when Cost Plus Drugs,which is the Mark Cuban pharmacy
, came out and started showinghow much it cost to get this
generic drug, one in particular.
Their price per month was about50 bucks per month.

(39:03):
The specialty pharmacy wascharging anywhere from four
to8,000.
So they just it's thewhack-a-mole story.
Transparency is good, but aslong as they keep, they kind of
anticipate what the nexttransparency is.
So they find another companythey've done is they started yet

(39:29):
another subsidiary not therebate aggregators that will go
to.
You know when biosimilarsthey're supposed to come to the
market and make everythingcheaper.
Okay, what has happened is thePBN will go to one biosimilar
manufacturer and say I have acompany that will co-produce
that drug for you and they eachhave their own one of those CVS

(39:51):
has Cordavis, unitedhealthcarehas Nuvela and Cigna Express,
grips has Qualent, and they allhave picked a biosimilar that
they will partner with.
And now they make money becausethey co-produce it.
So they're like a littlemanufacturer.
Then they take that drug andprefer that biosimilar on their

(40:13):
formulary and oftentimes ifthere's a high priced and a low
priced same biosimilar, theychoose the high priced one.
It's whack-a-mole.
So now they actuallymanufacture the drug Again judge
, jury and executioner.
They create the formulary andthen prefer the drug that they
make money on.
Back in the 90s manufacturerswere owning PBMs Merck, medco,

(40:37):
federal Trade Commission cameand said you can't make the drug
and then make up the list ofdrugs and only prefer the drug
that you make.
Well, that's what's happeningnow and I've written to Federal
Trade Commission.
They're just inundated now withPBM stuff and they're just
trying to get through it, but Ithink that's something that is

(40:57):
truly antitrust, anticompetitive.
So now they're not just thehealth insurance company and the
drug company and the specialtypharmacy and the bank and they
own the doctors.
They're now manufacturing thedrugs.

Speaker 1 (41:11):
Oh my gosh.

Speaker 2 (41:12):
So talk about vertical integration.

Speaker 1 (41:15):
It's on steroids, literally.
Yeah.

Speaker 2 (41:17):
I mean my saying on some social media.
Things are I'll keep doing thisas long as my passion stays
above.
You know ahead of my cynicismdoing this as long as my passion
stays above you know ahead ofmy cynicism.
But every time something likethis happens or I go to
Washington DC, my cynicismstarts to catch up with passion.
But then I hear these patients'stories and my passion jumps up
again.

Speaker 1 (41:38):
There's a lot of patients being harmed in the
context of this.
I think that this is somethingthat we see a lot with the, you
know, patient population that weserve, where there's so many
people that are getting, youknow, mislabeled packaging
they're getting, they're notgetting, especially with the big
three, their mail order inlarge part.
So a lot of times if they needan additional dose or something

(42:00):
like that, they're like oh well,ups can deliver it.
Well, ups doesn't alwaysdeliver to rural areas quickly,
number one, and many times theinstructions don't always occur
the same.
So they'll have theinstructions say this must be a
certain temperature and theyhave to be delivered, but then
they'll sit on the doorstep.
Sometimes they have to besigned, they'll take it back to
a warehouse.
It's not refrigerated, theyhave to be, and so we see a lot

(42:22):
of times these independentlyowned pharmacies are the ones
that oftentimes reallyunderstand.
You know, I think and correct meif I'm wrong, because you know
this far better than I do, but Ithink in the practice of
medicine, you know, the last 25years there's been this huge
push for physicians tospecialize.
I mean we have very fewgeneralists anymore, I mean
everybody has a PCP.

(42:43):
But generally, though, there'sbeen this big push to specialize
in all these differentspecialties right, and I think,
globally, not just in theAmerican system.
But we have really said, okay,that's the best way to practice
in many ways, because we'relearning so much about oncology,
we're learning so much abouthematology, we're learning so
much more in all of theseresearch projects, actually

(43:04):
discovering so much more that wecouldn't see before.
So we should hyper-serve thesespecific disease states where we
do have solutions that can bediscovered, and yet
simultaneously, in the deliveryof those specialty medications,
there are organizations, thereare companies that have really
become specialized in certainways of administration.
We've seen it, of course, in theIV space, where there's so many

(43:25):
people that still need in-homenursing.
There are different seasons oflife.
It could be a child that's justlearning to get infusion at
home.
It could be at the same time itcould be a senior who is having
venous axis issues.
That needs more help gettingyou know an IV at home.
You also have just preferencesin terms of.
It may sound like a conveniencefactor to some people, but the

(43:46):
right kind of band-aid.
You've got a lot of people thatwith latex allergies that
didn't have that 20 years ago.
So these types of things can beactually focused on and
understood and intrinsic in themethod of the way that they're
actually delivered.
As a provider, the pharmacy is aprovider also, and so in that
exchange of that expertise, oneof the mantras that I keep

(44:06):
floating around I haven't hadanybody really bite down on it
yet, but maybe one day is letspecialty pharmacies specialize
again, because I think at somelevel there are organizations
that say listen, we're going tobe small, we're going to focus
on this geography, or we'regoing to focus on this
particular disease state andthese set of issues and we're
going to hyper-serve thatpopulation, make sure that
they're served consistently inthe way the doctor prescribed,

(44:28):
on schedule, and they'recompliant and they're educated
and all of those things.
And a lot of times they functionin almost a social work
capacity too, because they'rehelping them with financial
assistance programs, they'rehelping untangle the barriers
right.
They're going to the schoolsand providing education to the
school nurse.
They're doing all of theseextra things that they don't get
compensated for directly, butthey're doing all of these extra
things that they don't getcompensated for directly but

(44:49):
they're doing that out of themechanism.
What the big three did was theysaid no, we're going to make
everything a transaction.
It's all going to come from onewarehouse and all you got to do
is just ship on the drug.
And that's just not the casewith many of these high cost
medications.
They have to be administered acertain way, in a certain
pattern and done always thatsame way.

Speaker 2 (45:04):
Yeah, I mean, I don't want to that's being disruptive
.
I don't want to throw anegative blanket over all of
them, because there are.
Even the big three do goodthings, sure.
The problem is is that they'vebecome so hyper-focused on the
profit that the care that you'retalking about, particularly
that community specialtypharmacies, can give Right and

(45:26):
even with less special drugspeople really like and they
depend on their communitypharmacists, their independent
pharmacists, to help them.
They know them.
The people sitting off inIllinois somewhere don't know my
patients down in New Orleans.

Speaker 1 (45:42):
Right.

Speaker 2 (45:42):
And what has happened is they've become so
hyper-focused on profit thatthere's the insurance companies
where the actual payment of thedrug and the procedure and the
visit is handled by the employer, the orisa plans the
self-insured employers.
Some of them are huge like UPSKroger employers, some of them

(46:07):
are huge like UPS.
We at CSRO, where I'm the vicepresident of advocacy and
government affairs, we startedsomething called a payer issue
response team, sorheumatologists from around the
country could send us problemsthey're having with payers.
And there was one that washaving a problem that they would
always buy and bill.
They would buy the drug, infuseit in their office and bill the

(46:29):
medical side of the healthinsurance company.
Well, as soon as now themedical side was part of the
pharmacy side, the specialtypharmacy side.
The third-party administratorwould tell the employer oh, it
would be much cheaper if wecould run it through our
specialty pharmacy.
We would send it to the doctorand they wouldn't buy in bill,

(46:53):
they wouldn't owe anything, itwould go straight to them.
Well, a couple of things happenwith that Talk about waste.
If the patient, if we changethe dose at the last minute, it
goes up, nope, they've alreadysent it from their specialty
pharmacy, we can't.
So then we can't give it tothem, or they're in the hospital
, it comes to the doctor'soffice, we can't give it to them
and then we realize they can'ttake that drug anymore.
It's just wasted.

(47:15):
So what we did was we had thisand it was a patient who had
worked at UPS.
They came into this newrheumatologist's office and they
said they told us that the drughas to be white bagged, meaning
Dr, so-and-so you need to getit from CVS's specialty pharmacy
and then infuse it.

(47:36):
So they did, because it was thefirst time the patient.
They didn't want the patient tohave any delay.
The next year, we helped thepractice write a letter to the
specialty pharmacy, or at leastthe PBM, and said can you grant
an exception so the doctor cando buy and bill, so there's no
waste?

(47:56):
And we got the exception.
Wow, the next year, which was2023, we wrote another exception
and they said no.
We wrote another exception andthey said no.
So this practice, who had avery good office manager, she
went and got the receipt fromspecialty pharmacy and I'm just
going to tell you the name ofthe drug it was Remicade, okay.
And then she had the receipt ofwhat she charged UPS

(48:24):
no-transcript From the doctor'soffice.
It was $13,000 for the wholeyear.
The patient paid $500 when itcame from specialty pharmacy.
They paid $25 when it wentthrough buy-in bill.
So I wrote a CSRO letter to theentire C-suite of UPS, copied

(48:45):
their CFO copied theircompliance officer, et cetera.
I didn't send it to CVSCaremark, just to them, and they
wrote back to the doctor'soffice and said we are going to
look into that.
Well, as soon as CVS Caremarkheard they were going to look,
because this isn't the onlypatient they're mandating,
especially pharmacy, they said,oh okay, no, nevermind, we'll

(49:05):
give you an exception.
And now there's like apermanent exception.
So that's just one examplewhere actually I mean because
it's happening in other areasUPS could be sued for a breach
of fiduciary duty to the plan.
If you continue to mandatewhite bagging and you're
charging $44,000 where your planwould only be paying 13 and

(49:26):
your employees paying 500 andthey could be paying 25, I mean
that could be a breach.
And it's all because of profitsand that is a result of the
vertical integration of themedical side, the pharmacy side
and and again the employer willhas been pulled over their eyes.

Speaker 1 (49:43):
They have no idea that it was costing that much
more Things that I noticed inthe hearing that you I think
this is the one that youtestified in.
There was quite a bit and I evenheard the hearing where the big
three were interviewedspecifically that I sat in on.
There was actually quite a bitof discussion around the fact
that they they still use theseindependent pharmacies and they

(50:05):
have a list of 1300 pharmaciesor whatever, but that was really
later debunked as being like no, this is not only are we not
doing that, but we're alsodirecting them to the ones that
we have direct contracts with.
And is there anything in thatarea that sort of just sticks
out to you as being also kind ofpart of this?
The distinction of them reallydoing steering is what we're

(50:26):
talking about, essentially, butthey're getting away with it
with ERISA plans and they'regetting away with it in
commercial spaces where theywould not necessarily have
probably wouldn't take that samerisk, maybe even in the public
policy side.
But I guess the question is isthis something that you're
seeing that there's corruptionwithin?
Even they're using this ideathat they are quote unquote,

(50:46):
using all these pharmacies whenthey're really not.

Speaker 2 (50:48):
Yeah, and if they are using these, all these
pharmacies, when they're reallynot, yeah, and if they are using
them, they're probably payingthem less than what they would
pay their pharmacy.

Speaker 1 (50:54):
Their preferred pharmacy?

Speaker 2 (50:55):
Yes, and which is causing a lot of of the
pharmacies to not be able to.
You know no, and if, and whatthey've done is they have these,
these sort of criteria forevaluating the pharmacies at the
end of the year and if theydidn't dot an I or cross a T
they can ding them.

(51:15):
And it used to be they couldjust take a bunch of money back
at the end of the year.
Now they have to kind of tellthem ahead of time how much
money they're going to take back.
So it becomes to the pointwhere the community pharmacies
they're actually pulling outbecause they're losing money.
They can't, they can't affordto be in that network Right or

(51:36):
in Medicare, where they do haveanti-steering.
44% of Medicare beneficiariesdo use the pharmacy that's not
necessarily mandated, but it'sthe easiest one for them to use.
Path of least resistance,they're not going to shop around
, and so what has happened overthe years is specialty pharmacy

(51:57):
has become huge, and one of thebills that you and I were
talking about that's probablynever going to pass.
But you never say never.

Speaker 1 (52:06):
We can only hope, though, it actually was
introduced last year.

Speaker 2 (52:10):
It has bicameral meaning both the senate and the
house have sponsors andbipartisan yes we've got
republicans and democrats behindit, yes, and what it would do
is make all the pbms, andconsequently their motherships,
um divest themselves of allpharmacies.
That makes total sense, becausethe specialty pharmacies also

(52:33):
sort of tend to make money onwhatever makes their PBM the
most money.
I actually had someone in theknow tell me that their drug was
slow, walked through thespecialty pharmacy.
Specialty pharmacy told thedoctor why don't you use this
drug?
Because we can get it quicker,forgetting to tell them that's

(52:55):
because we also make more moneyon it.
So, they actually will slow-walka drug that I've picked through
specialty pharmacy, make thepatient wait, causing a delay in
care which, as in bleedingdisorders, can be devastating,
and the same is mine, becausethen they'll have a flare and I
have to give them prednisone,and we know what happens when

(53:16):
people take steroids.
So really, just, they don'tmind harming the patient.
But part of the issue is, asyou recall, back I think it was
the Affordable Care Act where itcame out and said you have to,
of all the premium money you getin, you have to spend 85% of
that on patient care.
Well, all this other moneydoesn't have to go into patient

(53:38):
care because it's not comingfrom the premiums.
So they can basically totallyget around that rule or that law
.
So 85% of what comes throughthrough the pbms, none of it has
to go into patient care.

Speaker 1 (53:53):
85 of what comes through special, none of it has
to go through patient care whichcould make a whole lot of sense
as to why they actuallyseparated them out.
But wanted them separate notunder the same tax id, their
separate entity, but they areowned, but they are owned by the
same, by the same company, butnot all that money that they're
making.

Speaker 2 (54:12):
I mean the PBMs.
When you think of Optum, theymake all the money for your
UnitedHealth group, which isthen UnitedHealth Care, which
then is Optum.
Optum owns the doctors.
Optumrx is the PBM I mean.
When I think OptumRx, itreminds me of yet another story.
I had a woman contact me onLinkedIn.

(54:34):
She was an employer benefitconsultant, one that was not
conflicted, one that wasn't inthe back pocket of the insurance
company.
Okay, who knew they?

Speaker 1 (54:42):
have those.
Yeah, they have those.
Get her number later.

Speaker 2 (54:46):
She said that the employer contacted her because
one of his employees hadmetastatic prostate cancer.

Speaker 1 (54:54):
Okay.

Speaker 2 (54:54):
And the doctor had ordered a drug.
The generic of a drug calledZytiga, which is for metastatic
prostate cancer, went to thedrugstore with the generic order
Dabitarone, I think is the nameand the drugstore said I'm
sorry, your plan only covers andthis is he's telling this to
the employers paying for it onlycovers the brand, which is

(55:16):
10,000 a month.
And he goes.
But my doctor wrote for theAbiturone and they said I'm
sorry.
So the employer contacted hisconsultant, who called OptumRx,
and recorded the conversationand she sent it to me.
She said you can use the story,but don't use my name because I
still work with these insurancecompanies.
And the recording.

(55:36):
The pharmacy tech said oh yes,let me look and see.
Oh yes, only the brand, thegeneric, is excluded.
She says so you're excluding a$300 drug and only will fill a
$10,000 drug.
And the drug tech the pharmacytech just kind of laughed and
said you know we do that with alot of drugs.
And he started naming off theother drugs where they prefer

(55:58):
the brand.
And she said and he goes, I'mnot sure why they do that.
And she kind of laughed andsaid I know why they do it.
What if the doctor wants thegeneric.
They said well, the doctor canappeal and ask for the generic,
but the patient's going to paymore for the generic than they
will for the brand.

Speaker 1 (56:14):
Which was the whole point of generic, the whole
point of having it.

Speaker 2 (56:17):
So that's you know, and yet we talk about a drug
pricing crisis.
We have a formularyconstruction crisis.

Speaker 1 (56:23):
That's so important to understand.

Speaker 2 (56:25):
Unbelievable so true, wow.
Stories like that make mypassion go up a little bit
higher than my.

Speaker 1 (56:32):
I mean it makes my cynicism go up, but the fact
that there's somebody out therethat's actually Somebody that
represents that.

Speaker 2 (56:37):
And that that kind of thing is happening and the
employer had no idea.

Speaker 1 (56:40):
Right, we don't have time to get into the.
AFP issue.
But this is the same kind ofstuff we're hearing on the AFP
side too the alternative fundingprograms where they're using
ERISA law to basicallyessentially sort of say that you
don't have to support anyspecialty medications.
And then, of course, under ACAlaw, the essential health
benefit really became an issuewhere they said, well, in order

(57:03):
to do that, we'll go get thefree drug from the drug
manufacturer program and we'llsatisfy the EHB manufacturer
program and will satisfy the EHB.
But by doing that they end upgoing into massive delays.
And the free drug programs, bythe way, were only meant for a
very temporary solution whenthey started, when we had
lifetime caps and pre-existingconditions, and many of those

(57:23):
programs have reduced down tonothing and are now filtering
for these AFPs, causing hugedelays.
We're seeing upwards of 68-daydelays in terms of people
getting, and 22 percent ofpeople in the study that we did
last year didn't even get theirmedication period.
So this thing just continues tobuild.
I mean, you said earlier thegame of whack-a-mole.

(57:43):
It's like the minute that youthink that you're solving one
issue, they come up with someother antics and it's really
shocking and I do think that oneof the things that has made
America so distinctly differentfrom so many other countries
around the world is that, youknow, is really the strength of
our laws and the enforcement ofthe strength of those laws.
I mean, you hear that fromglobal leadership around the

(58:05):
world and it's shocking to mestill that in this capitalistic
environment that there's alwaysthis ever-changing sort of
manipulation of tactics to tryto intentionally persuade people
to really work this.
I'm constantly shocked and I'msure, again, this is something
you know far better than I do,but how many.
I'm very frustrated with thefact that the practice of

(58:25):
medicine as a whole, in terms ofdiagnosis as well as
prescribing, has really beencontrolled by a couple of guys
at the top of the chain.
They're MBAs, they don't evenhave a physician.
Most of the people who arecontrolling hospital networks
and all of these decision-makingthat are even allowed to how
many patients they have to seeevery day and all of the system
of the machine has really beenreally pushed and enforced and
actually driven to a lower levelof care for most people and

(58:50):
really made the practice ofbeing a physician miserable in
conjunction with every otherpart of the health system.
But it's all been reallydecided by a bunch of people who
are just MBAs.
They're people that haveaccounting backgrounds and
they're not even in medicine tobegin with, so they don't come
from this perspective of this.
And we have all these rules andlaws about all these things to

(59:10):
try to help protect the sanctityof the doctor-patient
relationship, and yet that'sbeing disrupted every single day
because it is really driven bythe almighty dollar, and I think
the only way to push back onthat is to elevate these real
living stories.
That's why I'm a huge advocate.
I'm constantly trying to getour people to get involved and
engaged and to speak up.

(59:31):
And yet there's been many raredisease groups and many patient
advocacy groups that have hadlarge numbers of people go to
the Hill and try to advocate forthese things.
But unless we speak up, there isno army out there that is
coming to rescue us.
It's going to be us to speak upor no one will, and that's why
I'm so grateful for advocateslike you that have just said you

(59:51):
know what.
You understand all of themoving parts, you understand all
of the transparency.
It's so hard to see behind thatcurtain, but you're still out
there defending the rights ofpeople every day, because really
, where the matter is, which isreally the name of the bill that
you really helped to introducewith you know, jake Osh andkloss
as well as Senator Warren aboutwhat is it people over.

Speaker 2 (01:00:13):
People before monopolies.
So you have Harsh, barker andOchenkloss in the House and
Warren and Hawley in the Senate,by Camerrill.
I don't know if it'll ever, butthe one thing that you said is
that we do pass some really goodlaws, whether it's accumulator
bans, et cetera.
They need teeth, yes, becausewhat happens is the insurance

(01:00:35):
company oh, it's an infraction,oh, that'll be $10,000.
It's like a mosquito bite.

Speaker 1 (01:00:41):
Right.

Speaker 2 (01:00:42):
And it's the same thing with hospital transparency
.
They don't want to do it either.
That's right.
So what you do is you make itso that, okay, I'm sorry, you
can't participate in Medicareanymore, your hospital can't
participate in Medicare becauseyou're not transparent.

(01:01:02):
I'm sorry, UnitedHealthcare,your specialty pharmacy, can't
participate in Medicare anymorebecause you can't have a
Medicare Advantage plan anymore,because you're not following
the laws.
The amount of money that goesinto their pocketbooks, you
can't find them enough.
I mean $400 million here, $400million there, when your profit
every quarter is $5 billion.
So if we do get the laws passedwhich is not always easy to do

(01:01:27):
because of money, there has tobe teeth.

Speaker 1 (01:01:29):
There has to be enforcement.
That is so true and sounfortunate that I do believe
over the last five to 10 yearswe really have seen a lacking in
enforcement, especially inhealth care.
You're right about if you tookMedicare and Medicaid away from
them, they would instantlychange their story.

Speaker 2 (01:01:45):
It's the same thing with 340B Manufacturers.
If you don't participate in340B, you don't participate in
Medicare or Medicaid.

Speaker 1 (01:01:52):
That's right, so it's good for the goose.

Speaker 2 (01:01:54):
It's good for the gander.

Speaker 1 (01:01:55):
Yes, that is so true.
How can we get that into?

Speaker 2 (01:01:58):
law, yeah, yeah, okay .

Speaker 1 (01:02:02):
Well, when I find the magic wand box I'm going to
give you one and then you'rejust going to pass it around.
But I think that there's so muchthat that it takes clarity to
speak truth to power and I thinkso often in advocacy what's
missing is if you just go intothese conversations with
legislators and you basicallytell them the sob story and look

(01:02:23):
, the sob story we said earlier,it's the humanity in it is what
actually does, I think, movethe needle oftentimes.
So I'm not saying that that'snot important, but I'm saying
that if we don't have the, weneed the humanity, but we need
it delivered with clarity aboutthe issues that really can move
things into an organization waythat actually makes sense for

(01:02:45):
everyone and puts the thingsthat were intended to be in the
right perspective and prioritylevels.
And unfortunately, again, themoney seems to be the almighty
dollar.
People cower down to that sooften in every element of this
whole healthcare system.
But we've got to continue toelevate the patient journey, the
patient story, the providerstory, the provider challenges,

(01:03:08):
or else this thing is just goingto get so bad that the train
will derail off the tracks andit'll be almost impossible to
put it back on, and I think thatwe can't possibly say we have
the greatest country in theworld if we don't have the
greatest healthcare system inthe world and we are far from it
.
Our healthcare system as awhole is really suffering and
needs a lot of work, and it'sgoing to take clear voices like

(01:03:31):
yours and hopefully many of thepeople listening today will help
to get inspired to getactivated.
I certainly hope the bill getsreintroduced, as you did so much
work to bring it to fruitionthe first time in the 118th, but
I do believe that there'spotential for more to be done
here in the 119th, but, like yousaid, it's got to be.

(01:03:52):
I'm personally hopeful.
I'd like to know your thoughtson this, but I'm personally
hopeful that all the hearingsand all of the work and
investigation that was done byso many committees and
subcommittees and individuallegislators over the last two
years, I'm hopeful that that'snot going to go by the wayside
and that work will continue on.

(01:04:12):
Even though nothing was reallycollectively decided, I still
think we have the potential toreally make some decisions,
especially in terms of PBMreform.
And do you?

Speaker 2 (01:04:22):
feel the same way I do, I think, because some of the
PBM reform actually saves thegovernment money.
So it can be used for, you know,in a reconciliation bill or
something like that, to, to, to,to offset the cost of something
else.
So there's, there's hope, andit's weird that it has to be
done that way.
It's unfortunate to understandit.

(01:04:44):
It's not as complex as peoplethink, but it can't be explained
in a soundbite andunfortunately, everybody wants
the whole answer in a soundbiteand unfortunately, everybody
wants the whole answer in asoundbite, even in an elevator
kind of pitch.
And it takes a little bit morethan that, not a lot more, but a
little bit more than that.
And we all live from soundbiteto soundbite.

Speaker 1 (01:05:04):
It's true and my grandfather used to reuse the
quote over and over which I lovewas that the path of least
resistance makes both men andrivers crooked, and so often I
think it's really the path ofleast resistance that so many
people are looking for, andthat's true in the soundbite,
that's true in some of thesethings.
We just want the sample size.

(01:05:28):
Just give me the small thingthat has gotten so complicated
in order to manipulate in thefavor of profits that it's
actually left the people and thehumanity behind the purpose of
the administration ofmedications that save lives.
It's left it behind and in thedust and actually failing in
many ways, not because we don'thave the science, not because we
don't have the way to be ableto distribute it, not because we

(01:05:50):
don't have a mechanism to evenpay for it, but it's because of
the lust and the hunger for themonetary gain from a few
entities that has actuallyreally stripped the power of the
benefits of all the work of thescience and the dedication of
so many thousands of researchersand people through the
generations.
Really, in so many ways, it's astep backwards, it's not a step

(01:06:13):
forward and we've got to changethat and it's only going to take
people that have the clarity ofthought like you have and the
passion that you have and thededication that hopefully we
collectively as a community haveto be able to really put the
pressure on these things.
I do think oftentimes thelobbying groups have so much
money and so much influencebecause the messaging right they
can get the sound bite they cando.

(01:06:33):
The thing that makes it soundlike their story is so much more
important than everyone else's.
But we cannot cower down to thepower of big business at the
sacrifice of our most vulnerablepeople in our population and
unfortunately that is what hasoccurred over the last 20 years.
We've got to change that.

Speaker 2 (01:06:48):
Yeah, I totally agree and I have to say thank you for
everything that yourorganization does.
It makes a difference in thelives of people that have either
been helped or not helped somuch.

Speaker 1 (01:07:01):
Wow.
Well, I appreciate that itcomes from a place of experience
and also a place of genuinelove for our communities, and I
really think that it's just likewhere we started off right.
It's like your experiencewalking through that with your
mom is really what still drivesyou today, and my experience
walking through it with myfamily is what drives me today,
and I know that there's a ton ofpeople that will listen to this

(01:07:23):
that will hopefully feelinspired I believe they will and
we really hope to hear feedbackfrom this as well.
But thank you so much for allthat you've done and continue to
do to be a force to be reckonedwith in this space, because we
need you more than ever in atime like this.

Speaker 2 (01:07:39):
So thank you.
Well, my passion is ahead of mycynicism, just sitting here
talking with you.
So, thank you.
It's a pleasure.

Speaker 1 (01:07:45):
It's wonderful.
Well, thank you so much fortaking time out to listen to
this podcast.
I hope this has been helpfulfor you, I hope it's inspired
you and, more importantly, wereally want to hear from you.
So make certain that you leavea note in the comments, so let
us know where you're listeningto this from, or maybe where
you've heard this from, but alsomake sure that you subscribe.
We will be having more sessionslike this, more conversations

(01:08:06):
like this, to do a deep diveinto really what's important to
all of us, into making importantchange and honest and open
conversations in healthcare.
And one of the things we wouldlove to also challenge you to do
is email us if you'veexperienced any kind of pain or
disruption in your care,specifically in this area of PBM
reform or in pharmacydisruption to getting the

(01:08:27):
medications that you need,including financial assistance
aid programs.
You can email us at info athope-charitiesorg, and we would
love to hear your specific storyand understand how we can
hopefully serve you, if notimmediately through our
resources and assistanceprograms, but we may also be
able to help to utilize thosestories to be able to help
influence change in the biggerpicture of advocacy and policy

(01:08:51):
work.
So thank you so much forlistening to this.
We hope to see you in the nextone and we'll take care.
Bye now.