Latest / Cultural Wars | America Out Loud News / The hidden cost of care PBMs, carve-outs, and denied treatment

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The hidden cost of care PBMs, carve-outs, and denied treatment · Cultural Wars | America Out Loud News

• 0:06
  Welcome to the unto take a deep breath.
• 0:11
  Take the higher roll.
• 0:13
  It's what they always say.
• 0:14
  Let's see if they know the way they won't take it from me.
• 0:20
  Don't ever dump yourself with swiping just a dream.
• 0:24
  You made your own so kid can scream.
• 0:31
  You never had the chance.
• 0:33
  So watch with boards come my friend, because this is whoa.
• 0:44
  It's time.
• 0:54
  Welcome back to the Nurses Report on America Out Loud.
• 0:57
  I'm your host, Ashley Caputo, registered nurse and functional medicine practitioner.
• 1:02
  Today's episode um is it's kind of spinning off of what we talked about last week, but it's something that impacts millions of Americans, and most people have just never heard of it.
• 1:14
  So today we're gonna dive more into pharmacy benefit managers or PBMs and something called carve outs.
• 1:23
  And these are entity entities quietly controlling what medications you can get, when you can get them, and sometimes whether you get them at all.
• 1:33
  And we're gonna walk through exactly how this system works and how it impacts real patients.
• 1:40
  I'm joined today again by um Amy Whitlock, who's experiencing firsthand through a case involving a specialty pharmacy carve out trying to get her son's medication.
• 1:52
  Amy, I'm so glad you're here with us today.
• 1:55
  Thank you.
• 1:56
  Thank you.
• 1:57
  So before we get into everything, I know um if our listeners didn't listen to last week's podcast, we kind of we talked about this a little bit and we talked about just denials um from insurance companies and how that can impact you know your life directly and um what a struggle that is.
• 2:18
  Today we're kind of going more into the pharmacy benefit managers and carve-outs because um they're really impacting a lot of people's lives um and their ability to get treatment.
• 2:34
  So before we go into exactly what's going on with you, I wanted to kind of explain um what pharmacy benefit managers are.
• 2:43
  So the PBMs were originally created back in the 1960s and 70s, and they were independent companies, and their job was to process pharmacy claims, negotiate drug prices.
• 2:58
  So it was supposed to be for the benefit of the consumer, right?
• 3:01
  And they were also to um help insurance companies manage medications, so it was supposed to be this great thing.
• 3:11
  Um essentially they were like a middleman, and then they were working for the insurance companies, but over time, something changed.
• 3:21
  Those independent pharmacy benefit managers were acquired by insurance companies, and now the biggest ones are actually owned by the insurers themselves.
• 3:32
  So CVS Care Mark, Express uh Express Scripts, and Optimar X.
• 3:39
  So there is no longer really like a middleman per se.
• 3:43
  The middleman is actually part of the bigger company, they're all a part of the same system.
• 3:50
  Right.
• 3:50
  And that matters because now they control which medications are covered, which pharmacies patients can use, and whether a medication gets approved at all.
• 4:01
  So before you got into all of this, I'm just curious.
• 4:06
  Like, did you even know, did you know what a pharmacy benefit manager was?
• 4:10
  Was that something that you know you just knew about?
• 4:14
  No idea.
• 4:15
  I mean, you grow up trusting the system, you grow up thinking we'll have insurance, we'll be covered, there won't be any hiccups until there is.
• 4:26
  And it will take your breath away.
• 4:29
  It will give you sleepless nights.
• 4:32
  Um, the fact that this broken system has the authority that they have.
• 4:40
  It's mind-blowing to me.
• 4:42
  There's so many people getting left by the wayside.
• 4:46
  And it's it's not fair.
• 4:48
  Um, I am in no way an expert, but I will tell you the passion is there to do better, not just for our family, but for others.
• 5:00
  Yeah.
• 5:01
  Because when you've gone through it and we're still going through it, like you go through it once.
• 5:06
  Oh, we've got this.
• 5:07
  You go through it again.
• 5:09
  Well, maybe it won't be as bad this time.
• 5:11
  And then you go through it for the third time, and it's just it's just like a slap on the cheek.
• 5:17
  Um yeah, I don't even, I don't even have the words this morning.
• 5:21
  Uh I'll be honest.
• 5:23
  Yeah, and and the reason I asked was because I mean, even being a nurse, I didn't really understand what pharmacy benefit managers were.
• 5:33
  You know, like I just knew you had insurance, and it covered, you know, pharmacy.
• 5:40
  So I didn't realize um until I started kind of working more in the system that these were separate.
• 5:47
  Who covers your medical insurance is not necessarily who is covering your pharmacy benefits, and sometimes it's under that same umbrella company, um, and other times it's completely outside of it.
• 5:59
  So that I think can cause an obstacle too because now you know to call your insurance company when something's not covered, but sometimes your insurance company can't help you because they're not even the ones managing all of this, and that just leads to more obstacles for the families.
• 6:20
  It does.
• 6:21
  And I mean, it wasn't always this way for us.
• 6:24
  We for a couple of years, you know, everything just went under medical.
• 6:28
  And I know honestly, I'm I mean, I know people give insurance companies a bad rep, a bad rap, but um, it really isn't the insurance company this time.
• 6:38
  It is falling solely back on my husband's employer.
• 6:43
  And um, because they have created this mandated, and that's stress, it's mandated, carve out specialty pharmacy benefit.
• 6:54
  Yeah.
• 6:54
  And they're dictating literally the livelihood of people, um, and not dictating it well.
• 7:00
  People and not dictating it well.
• 7:04
  No, and and so I had never I'd heard of pharmacy benefit managers, right?
• 7:04
  No, and and so I had never I'd heard of pharmacy benefit managers, right?
• 7:10
  So that's that's something I I knew about.
• 7:10
  So that's that's something I I knew about.
• 7:14
  Um the this carve out pharmacy, that was something completely new to me.
• 7:14
  Um the this carve out pharmacy, that was something completely new to me.
• 7:19
  And so I had to go to Google and chat GPT and try to figure out you know exactly what this was.
• 7:19
  And so I had to go to Google and chat GPT and try to figure out exactly what this was.
• 7:26
  Um, because I just never even heard the term.
• 7:26
  Um, because I just never even heard the term.
• 7:29
  I kept hearing.
• 7:29
  I kept hearing everybody refer to it as a carve out.
• 7:33
  And I knew it as a specialty pharmacy.
• 7:36
  I had no idea what a carve out was.
• 7:38
  So basically, um instead of your pharmacy benefits being managed within your regular insurance plan, it gets separated out and handed to a completely different company.
• 7:52
  So now instead of one coordinated system, now you've got multiple systems managing the same patient.
• 7:59
  And in this instance, you actually you have your medical benefits with one company, you have your pharmacy benefits with another company, and then you have your specialty pharmacy benefits through a separate company.
• 8:17
  And this company is a carve out called Archimedes, and um employers are doing this not to hurt their employees.
• 8:31
  I I don't know, and maybe you can speak better to this.
• 8:35
  I I don't think there's somebody in an office somewhere in corporate saying, what can we do to harm our employees?
• 8:42
  You know, I think they look at it from a business standpoint and say, where can we save money and still provide services to our employees?
• 8:52
  And that's where this carve out pharmacy comes into place because their purpose is to save money, like that's that's for the employer, not for the patient.
• 9:05
  Right.
• 9:05
  Um so I just this was something totally new to me, and I work in the insurance world.
• 9:12
  So I don't think they're they're new from what I understand, but they are just becoming more popular.
• 9:20
  Right.
• 9:20
  So well, as you know, the medication that we are fighting for and actually just fought for, uh, we we just had this battle back in February.
• 9:33
  That's not long.
• 9:34
  And then they come back and try to, you know, and that they've literally taken the medication.
• 9:39
  So you know, this medication is not new.
• 9:40
  Our son's been on it for two years, and our husband's company, they actually helped us fight for the medication the first time two years ago.
• 9:52
  Um, I don't think they went into this thinking we're we want to pull everyone's benefits and just make everybody, you know, sick again.
• 10:02
  Like I don't I don't think that was their intention.
• 10:04
  I think overall, like every company, you know, their goal is the bottom dollar to save money.
• 10:11
  And I and the reason I say this, like I I don't I don't think they fully grasp what they themselves were getting into when they created this contract with Archimedes.
• 10:23
  And the reason I say that is because when I called the big office corporate to my husband's company and explained to them what was going on, they were astonished.
• 10:32
  And they said, Well, you know, we've got our other side, we've got our other specialty pharmacy.
• 10:38
  Can't we just, you know, foul this medication under that one?
• 10:44
  Because it's right way.
• 10:45
  And I was like, nope.
• 10:47
  Like uh, you guys signed the mandated contract and this medication and what's so bad, the medication that Adam needs is not even in their formulary, Archimedes formulary, and they're not even giving us an alternative.
• 10:59
  And when I say this to my husband's company, I don't think they're pretending to be in shock.
• 11:07
  They're they're literally like they don't know themselves.
• 11:10
  And it's my understanding as of this week, like they're very upset with the way things are being handled, not just for our family, but for multiple families.
• 11:21
  And um I think they're trying, I think they're just juggling a piece of the puzzle that they didn't know existed.
• 11:30
  Um I don't know.
• 11:35
  That's that's my personal opinion, but just because of their reaction that we had, you know, from them two months ago.
• 11:40
  Like I don't think it, I think all of this has been very unintentional, but now that they're saying really what the contract entails.
• 11:48
  Um I think they probably feel a little stifled right now.
• 11:56
  Yeah, and I I think all of us, I mean, if if you just apply this to kind of your everyday life, right?
• 12:04
  Like we all get sucked in by marketing.
• 12:06
  And so Archimedes' job is to promote their business and gain clients.
• 12:14
  And so, you know, I'm sure they have some rep that goes out and talks to these companies and say, hey, how much are you spending in your pharmacy benefits?
• 12:25
  I guarantee you we can save you money.
• 12:28
  You know, now I don't know this for sure, but they got to have something like that, right?
• 12:31
  Well, honestly, their website, their website speaks to what they're saying.
• 12:37
  Um, honestly, you you can say that because their website blatantly.
• 12:41
  Yeah.
• 12:42
  I actually have them pulled up right now.
• 12:44
  So let's just read from their website.
• 12:47
  So, you know, to an employer, this could sound very appealing because they they're probably not really thinking of the real world consequences.
• 12:57
  Um that could happen to their employees.
• 13:02
  They're seeing, because basically Archimedes is saying you're being kind of screwed over for lack of a better word.
• 13:12
  Um telling the employer, you know, what they're gouging, they're getting too much money out of you.
• 13:18
  A lot of these meds, there's a cheaper alternative they should be using.
• 13:22
  They could be using generics or it's not even medically appropriate.
• 13:26
  We go in and we clean all that up and save you money.
• 13:29
  So per their website, it says take back control of your benefit.
• 13:34
  Archimedes is helping plan sponsors address the rising cost of specialty medications through our unique specialty drug PBM solution, moves management of specialty drug benefits away from the traditional PBM, applies rigorous clinical and cost management programs uniquely designed for high cost specialty patients and utilizes Archimedes formulary to optimize appropriate use and lowest net cost.
• 14:00
  Archimedes formulary to optimize appropriate use and lowest net cost.
• 14:07
  And their website goes on.
• 14:07
  And their website goes on.
• 14:10
  I mean, this is the theme.
• 14:10
  I mean, this is the theme.
• 14:11
  The whole theme of their website is how they are going to save the employer money.
• 14:11
  The whole theme of their website is how they are going to save the employer money.
• 14:17
  There is not much on here that says what a benefit it's going to be for the actual consumer.
• 14:17
  There is not much on here that says what a benefit it's going to be for the actual consumer.
• 14:24
  So, you know, I don't know how they do their marketing, but if you're pitching this to Tyson.
• 14:24
  So, you know, I don't know how they do their marketing, but if you're pitching this to Tyson, right.
• 14:30
  Or a big company, like, you know, Home Depot and Walmart and all these, all these big companies out there, they're gonna jump on board and say, well, yeah, we want to save money and still provide coverage to our employees.
• 14:46
  Right.
• 14:47
  But then when you get into the the thick of it, you realize that there's more to it than that because what they're actually doing is they are it's it's almost like they're auditing um all the claims that they have and they're going through and saying, you know, um this drug shouldn't be used, it's not medically necessary, or we don't want you to use this drug, we want you to use this other drug.
• 15:15
  And these aren't just new requests, these are medications that people have been on for a long time.
• 15:20
  And I can say that with a hundred percent certainty that there are more people having this same problem.
• 15:27
  Um, you know, people getting um maintenance chemo that they don't cover that medication anymore.
• 15:35
  Um infusions for Crohn's disease being denied, all of these things, and some of them they're they're providing some alternatives for people, like um, you know, well, we want you to use this other medication.
• 15:50
  Not taking into consideration, maybe they've tried similar drugs or they've already tried those medications and they haven't worked for them.
• 15:58
  They just see that it's a generic, that it's cheaper, and they want you to go that route.
• 16:04
  And that's kind of what they've done for Adam with another medication that he has.
• 16:10
  They want him to use it an all an alternative medication that's um cheaper, more cost effective.
• 16:19
  Right.
• 16:19
  But it also that your listeners know, since last week's podcast, we only had one denial last week.
• 16:28
  Now we have two.
• 16:29
  Yeah.
• 16:29
  Um, and these are medications that are not new to Adam.
• 16:33
  These are medications that we know positively affect his condition.
• 16:38
  Like, I mean, they literally keep him functioning.
• 16:40
  Um the the newest denial is um coming from the standpoint of we we want you to try try this cheaper medication.
• 16:54
  Well, the thing is when you've got an immune dysregulated child, you cannot toy with our immune system.
• 17:02
  So there's different immune suppression medications and there's different classifications, and you can probably speak very well to this because you you see these different classes of medications on the daily, and they want Adam not to just change medications, but a completely different class of medications that will affect a different portion of his immune system.
• 17:27
  Um he's on something known as an um interleukin six, it's like a protein blocker, and they want to put him on a TNF, which affects your tumor necrosis factor.
• 17:39
  And I know that's a lot of medical jargon, but basically in a nutshell, um, they want him to swap to a completely different version of medication that will affect a different side of his immune system, which will inadvertently also trigger the autoimmunecephalitis because you've got you've got this domino effect.
• 18:02
  So it's not one denial.
• 18:05
  We are now facing two.
• 18:07
  They have given us an alternative for one, but like I said, it affects a different portion of the immune system.
• 18:13
  And it comes with very unwanted.
• 18:18
  Oh my gosh.
• 18:19
  I mean, he could lose his hair on the medication.
• 18:22
  I mean, I know families that have used that medication because they have to, it's a cheaper version in their kids' hair.
• 18:27
  I mean, you know what I mean?
• 18:29
  Yeah.
• 18:30
  Why rock the boat and make them miserable, but also make them lose their confidence.
• 18:36
  I mean, can you imagine this boy that's been sick for seven years?
• 18:39
  We finally recover him from so many debilitating neurological events in his life.
• 18:47
  I mean, we're talking about the kid.
• 18:49
  He quit walking, he quit talking.
• 18:51
  Yeah.
• 18:52
  I mean, he he stopped living.
• 18:54
  Um this encephalitis that he had, it literally wiped out his academic memory.
• 19:01
  I mean, we have recovered him in more ways than they can ever fathom.
• 19:05
  And they don't care to understand it, otherwise they would be on the phone with me instead of sending me a letter that says you're not even eligible for an appeal.
• 19:15
  Right.
• 19:16
  Like that's that's the one thing that really threw me off was because I know working in the insurance field, there's always an appeal.
• 19:27
  There's uh it you might not be successful, but there's always a route to push back.
• 19:33
  So, and this goes for almost anything in the medical field.
• 19:38
  If you are at the hospital and they want to discharge you, you can appeal your discharge.
• 19:44
  You know, if um, if you get denied for a surgery or some kind of treatment, then you appeal, and then there's room for a second level appeal um and a peer-to-peer, you know, all these things.
• 20:00
  And all of a sudden you get this letter and it says, sorry, there's there's no appeal.
• 20:06
  And that was just really mind-blowing because it didn't give you any other option except well, good luck.
• 20:14
  I hope you can find the medication on your own.
• 20:16
  So let's talk about this medication real quick.
• 20:19
  Because, you know, for some people, like for instance, one of the number one medication denials that I deal with is for protonics, this simple um medication for acid reflex.
• 20:33
  I'm sorry, it's not a funny, but it's almost laughable.
• 20:37
  It's almost laughable because like seriously.
• 20:40
  Yeah.
• 20:41
  No, this was like the number one thing that I would get.
• 20:44
  Why won't you cover, you know, why won't my benefits cover um protonics?
• 20:49
  And it's like, well, because you can buy it over the counter.
• 20:51
  So a lot of insurance will not cover things that you can buy over the counter.
• 20:55
  So your doctor might prescribe like vitamin D and your pharmacy benefits will say, no, you can buy vitamin D over the counter, you know, and they'll deny it.
• 21:00
  Will say, no, you can buy vitamin D over the counter, you know, and they'll deny it.
• 21:05
  So these were simple things that I could fix, right?
• 21:05
  So these were simple things that I could fix, right?
• 21:08
  Like you can go to your Cuban cost plus and you can get three months' supply for like nine dollars.
• 21:08
  Like you can go to your Cuban cost plus, and you can get three months' supply for like nine dollars.
• 21:14
  It's crazy.
• 21:14
  It's crazy.
• 21:16
  So these were simple things, but the the pharmacy gave you an alternative.
• 21:16
  So these were simple things, but the pharmacy gave you an alternative.
• 21:22
  It was like we don't cover it because it's over the counter.
• 21:22
  It was like we don't cover it because it's over the counter.
• 21:25
  Here are the medications that you can take, right?
• 21:25
  Here are the medications that you can take, right?
• 21:28
  Right.
• 21:28
  Right.
• 21:28
  There was always like some.
• 21:28
  There was always like some sort of guidance.
• 21:31
  And with this, it was very closed door.
• 21:34
  Like you, you don't get this medication, isn't 20 over the counter like like Omeprasol is.
• 21:43
  This medication is 38,000 per infusion.
• 21:48
  Right.
• 21:49
  So there's there's no option to say, well, I'm just gonna go buy it.
• 21:54
  You know, right.
• 21:55
  Um, because he gets it monthly.
• 21:58
  So that's that's a lot of money.
• 22:00
  Um, even like a GoFundMe is is not gonna help in that regard.
• 22:05
  Right, you know.
• 22:06
  Um, and then we need somebody give it.
• 22:09
  We even approached um Archimedes, and I was like, okay, what is in your formulary?
• 22:14
  Well, we don't know.
• 22:15
  I don't have that information in front of me.
• 22:18
  And it's my understanding that on their website, they give you options of different medications, different formularies.
• 22:26
  But when we look up the gamma guard, the IVIG, we can't find anything.
• 22:32
  Um so that's why we really are like we are advocating around the clock for our son, um, so that my husband's company will come in and allow this.
• 22:44
  It's a simple fix.
• 22:45
  Allow this to be placed back under medical.
• 22:48
  And apparently it's not a simple fix based on the letter that we received late last night after hours.
• 22:53
  I just loved how they slid in this heartbreaking letter, you know, after hours late at night, with no way of contacting, you know, the the employer that late hour.
• 23:05
  But what was so confusing that the letter doesn't even state one thing about the IVIG.
• 23:10
  It's only talking about his immunotherapy.
• 23:13
  The immunotherapy is important.
• 23:15
  But between the two, the one that keeps him functioning, it's the antibodies.
• 23:19
  It's the IVIG.
• 23:21
  So they completely diverted the conversation to, well, you didn't get it because of this and that.
• 23:26
  Like they Archimedes even blamed it on our physicians.
• 23:30
  They were like, your physician did not even reach back out to us.
• 23:35
  You know, we were trying to give, they were not trying to give us an appeal.
• 23:38
  I've got the letter in, you know, in my hand, and it says, What they told us because it was experimental, but they told our home health because it wasn't in the formulary.
• 23:50
  So they're giving different stories to different people.
• 23:53
  And um that's that's very unprofessional.
• 23:59
  And when they're toying with the well-being of your son, it's very disheartening.
• 24:06
  Everyone has the right to thrive.
• 24:09
  We should not have to just simply survive.
• 24:12
  We should be living and enjoying life.
• 24:14
  And they're I feel like they're I feel like they're written as death sentence if I can just be blunt.
• 24:20
  Yeah.
• 24:20
  Well, and Adam feels that way as well.
• 24:23
  I think he even said that, you know.
• 24:25
  Um, which you know.
• 24:30
  Let's so first let's talk about just in case our listeners aren't aware, because obviously we're talking about the importance of getting this medication, but not everybody's familiar, right?
• 24:42
  With IVIG.
• 24:44
  Um, I used to do home infusions, and I had a lot of clients that I did IVIG for them.
• 24:52
  Um, and a lot of different neurologic disorders, autoimmune disorders.
• 24:58
  Um, I would say uh probably the bulk of my clients that I personally did were um they have myasthenia gravis or multiple sclerosis.
• 25:09
  And um, so it was like an ongoing infusion, like lifelong, right?
• 25:15
  Um there are instances where people will get IVIG for um like Guillaume Buret syndrome, where it's not gonna be, it might not be lifelong, but it's part of a treatment.
• 25:26
  Um it's primarily used, um, it's a therapeutic treatment that's made from donated human plasma.
• 25:35
  So it's used to treat immunodeficiencies, autoimmune disease, and inflammatory illness by providing like healthy concentrated antibodies.
• 25:44
  Yes.
• 25:45
  So it's a really cool medication.
• 25:48
  I think probably one of the things that I get frustrated with about this medication is it's limited on what it's FDA approved for.
• 25:58
  So we all know that medications are used off label all the time.
• 26:03
  And you repurpose drugs, right?
• 26:07
  Like we find additional purposes for these drugs all the time.
• 26:11
  And um, so IVIG is used off label a lot, but insurance doesn't like to approve it for off label because it's expensive.
• 26:22
  So a lot of the times the there's strict criteria that they have to have a diagnosis that it is FDA approved for.
• 26:30
  I um, and I'm gonna have to pause for a second because we're already up against a break.
• 26:35
  And I almost completely forgot because I get really into this because I I do too.
• 26:40
  I'm so upset right now.
• 26:41
  But um, so we're gonna pause real quick.
• 26:43
  We're gonna go to break, and then when we come back, we'll we'll keep talking about um IVIG and then also why it helps Adam um in his condition, and then dig a little more into these um carve out pharmacies.
• 26:55
  So hang out with us, we'll be right back on the nurse's report.
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  Mints and gum all contain xylitol, a natural ingredient shown to dramatically improve oral health.
• 28:06
  Sprite can be found online and at all fine natural retailers.
• 28:06
  Sprite can be found online and at all fine natural retailers.
• 28:12
  And I quote you and I have a rendezvous with destiny.
• 28:12
  I called you and I have a rendezvous with destiny.
• 28:16
  We will preserve broad children this the last vegetable man on earth.
• 28:16
  We will preserve for our children this, the last vegetable man on earth.
• 28:21
  Or we will sentence them to take the first step into a thousand years of doctors.
• 28:21
  Or we will send them to take the first step into a thousand years of doctors.
• 28:27
  Those are the words of number 40.
• 28:27
  Those are the words of number 40.
• 28:29
  Ronald.
• 28:29
  Ronald Reagan, shine bright as America approaches 250 years.
• 28:38
  America Outloud Doc News is that place to awaken your heart, soul, and mind to the all-but the nurses report on America Out Loud.
• 28:53
  I'm your host, Ashley Capito, registered nurse and functional medicine practitioner.
• 28:57
  And today I have an amazing guest again with me.
• 29:01
  She's like a regular on the show, Amy Whitlock.
• 29:04
  And before the break, we were talking about pharmacy benefit managers, the PBMs, and also these carve-out specialty pharmacies that employers have been using that is saving them money, but causing a lot of habit havoc in people's lives.
• 29:25
  So before the break, we were talking about because the medication that we're having, difficulty getting for her son Adam is IVIG.
• 29:34
  So we were just talking a little bit about what that medication is.
• 29:38
  So basically it's it's used for a lot of immune-mediated neurologic and infectious conditions.
• 29:45
  Um it is a really you know cool drug.
• 29:48
  So before the break, I was saying, you know, it's not FDA approved for everything that we know that it's helpful for.
• 29:56
  Um that was one of the hurdles that we faced with Adam in the beginning was he didn't really have a diagnosis that warranted um the IVIG.
• 30:06
  We knew we had an autoimmune condition, but they hadn't quite pinpointed, you know, what it looked.
• 30:12
  So what was he actually diagnosed with and we're treating him for now?
• 30:17
  Well, first of all, thank you for explaining that to the audience.
• 30:21
  I get so passionate and and just full of zeal when we discuss this, and oftentimes I forget that people just a lot of people don't know.
• 30:31
  They they don't know what I didn't know the medication existed.
• 30:34
  And so, but I think as a whole, people can relate in some way, whether they've been through it or whether they know someone that is going through it to the you know, this piece of the conversation about insurance and denials and probably even carve outs are getting more popular now.
• 30:51
  But um, so thank you for explaining all of that because sometimes I just go on a rampage and you know the mama bear starts to roar.
• 31:00
  Yes, no, I I understand.
• 31:02
  I feel the same way.
• 31:03
  And then I have to remind myself that maybe not everybody, you know, knows um what we're talking about.
• 31:10
  So getting back to your question.
• 31:15
  Originally we had no diagnosis, he just kept declining.
• 31:20
  Um I mean, I guess the easiest way to explain it is just to give you the sequence.
• 31:28
  And um, so he was on immunotherapy for a condition that's it's just an umbrella term for joint and tissue inflammation.
• 31:37
  It's JIA.
• 31:38
  And so he was on immunotherapy for that.
• 31:42
  And even back then we were, you know, fighting for his treatments, and so our insurance at that time wanted us to try a different medication here, same old song and dance.
• 31:55
  And so, you know, we did.
• 31:57
  Um, that's before we knew that we could fight.
• 32:01
  That's before we knew how well advocacy services, you know, help in these situations.
• 32:07
  And during that swap, and as a matter of fact, it's it's it's one of the very medications that uh was suggested to us recently.
• 32:17
  Um, it triggered his immune system, and um, he also caught a funky virus called the astrovirus, and um, he just kept declining neurologically.
• 32:28
  So, about eight months rocked on, and we made multiple trips to the local children's hospital, and I kind of knew his symptoms were pointing towards autoimmune encephalitis, but they were like, no, mom, we, you know, who am I?
• 32:47
  I'm mom.
• 32:48
  I don't know anything.
• 32:49
  No, mom.
• 32:50
  I don't think so.
• 32:51
  And so we ended up taking him to Boston Children's Hospital, and they that's who formally um diagnosed him.
• 33:00
  And unfortunately, they agreed with every test that was ran on Adam locally, but um they cited to me it was just eight months too late because you have to catch these when with encephalitis, like you've got to catch um these antibodies to like when you're doing the uh lumbar puncture, like you've got to catch it at at the right time.
• 33:24
  But um, so Boston has tons of studies, and their frontline treatment is IVIG.
• 33:32
  So we came home and we did everything that we knew to do.
• 33:38
  Well, like we begged for this treatment, and we continuously got a denial that he declined so badly in 2024.
• 33:47
  I take him to the hospital, and I said, give it to him.
• 33:51
  We're going to lose him.
• 33:53
  And so his doctor within the immune dysregulation department came out and she said, You know, you don't have approval.
• 34:00
  I said, I don't care.
• 34:05
  I said, We're gonna lose our baby.
• 34:08
  He's still my baby.
• 34:09
  I don't care how big he is.
• 34:11
  So they agreed.
• 34:14
  On the way home.
• 34:16
  And this is not the this is not the full dose.
• 34:19
  They only gave him a portion of the dose, and we had a son that we would pay, like if we could not get insurance to pay.
• 34:26
  So we basically signed away the farm for one infusion.
• 34:32
  And on the way home from that small dose infusion, he spoke to us.
• 34:42
  And we knew.
• 34:44
  So we called the insurance company and we called the hospital.
• 34:49
  And at this finally, and the the hospital was finally convinced at this point.
• 34:53
  And so they started fighting.
• 34:55
  We started fighting Boston's um, you know, their uh their recommendations and their official diagnosis came down, and we finally we finally got it, but it it took a long time.
• 35:00
  you know their uh their recommendations and their official diagnosis came down and we finally we finally got it but it it took a long time so for a carve out company to come in and just take away what we worked for it feels like a gut punch i'm livid you know i'm disgusted with the company and the way they're handling it like you're not even human like there's no human aspect to all of this but um and let's be clear so if you look on the national institute of health it says IVIG is a first line immunotherapy for autoimmune encephalitis it's neutralized pathogenic antibodies and modulate immune response everyone experimental like they said yeah it's a first line it blatantly says experimental I actually had to send our denial letter to my husband's company because Archimedes is telling them something totally different I sent them a letter at the copy of the letter last night I was like they're lying to you like they're bold faced lying to you and um I just I don't I it's so unethical I mean like you said when when these when these PBMs were created it was it was for the people it was for families and what do we have now we have a a very broken system there needs to be some sort of insurance reform and I'm just I'm hoping and praying that my husband's company will just be moved on his on our son's behalf because without it from what I was told this morning there's ma'am I think they're like the employer itself is kind of stuck they're in a contract so they are going to have to make some sort of exception to get out of this right well and I um yeah the the letter the email we got last night uh basically stated there was nothing they could do um because of the contract because of the regulations that are built in with Archimedes um so we aren't sure what's gonna happen but um I I do know God is able he has done this before we've been up against a wall maybe not this big of a wall but God's still able he's he's bigger than any bureaucratic red tape um that they can slap all on this case and um we've asked everyone to pray so your listening audience those that are believers and those that you know you know without a doubt prayer works um we ask you to pray on this behalf yeah we got a lot of prayer warriors out there so definitely um keep Adam in your prayers we are fighting um you know we're gonna keep fighting obviously we're not giving up right but you know it's going back to these um carve out you know they were created because our system's broken so if you really look at the bigger picture like this they were created because the PVMs are broken you know um and but it it's it's almost like you know when you have um they saw an opportunity I think and maybe initially the intention was good like you know let's let's see because there there is a lot of cost savings out there so I'll say that but most of your PBMs and your case managers and stuff like that will look on your behalf to try to help find cost savings because sometimes and you can probably speak to this but even with insurance a lot of the times your copay your you know all of that for medications is still can be pretty pricey so um I know I personally I help people get like copay cards savings cards a lot of the times you go straight to the manufacturer and you can find um archimedes is wanting you to before they will even consider moving forward on any review or decision they're wanting you to um see if you can get this medication for free right that is correct and that's what I do not understand because they have us previously grandfathered in because Adam's been on this medication for so long in February they grandfathered him in to this carve out program and we were set and the letter that we got last week stated that after April 30th there is no approval there is no appeal option because it's experimental and it's not um we we even have from and and this is this is for this is for both his infusions so he has the immunotherapy and we have the antibodies the IVIG so uh IVIG with insurance our copay is three thousand a month the um the abetacept his immunotherapy the copay is 1000 per month so that's four thousand dollars that per month that we were going to have to cover so we reached out because we only have private insurance so we reached out to the manufacturers the people that make this medication and they do have copay assistance and like I mean we've done our due diligence to cover every angle of this complicated piece like he has a standing order with both companies a one year grant to cover our copies and we were set like everything was set to move forward and then now they're like I don't I don't understand that they're just they're they're jerking it out from under him even though we had approval February like we had the little battle with them it was a big battle in February and then we were covered March and April and then we get our letter last week stating you know we're not authorizing this anymore because it's experimental and it's not in our state the state we live in there's so many children with um diagnoses sort of like Adams that they've mandated this medication in the state of Georgia so I don't like they're even working around the state mandate that our governor set for children like Adam.
• 35:10
  So for a carve out company to come in and just take away what we worked for.
• 35:19
  It feels like a gut punch.
• 35:26
  I I'm livid, you know, I'm
• 42:00
  Governor set for children like Adam.
• 42:03
  It's funny because I I literally just pulled that up.
• 42:03
  It's funny because I I literally just pulled that up so um starting January 1st 2026 Georgia SB5 mandates insurance coverage for pans and pandas treatment including IVIG requiring compliance with clinical practice guidelines.
• 42:06
  So starting January 1st, 2026, Georgia SB5 mandates insurance coverage for pans and pandas treatment, including IVIG, requiring compliance with clinical practice guidelines.
• 42:22
  So then it says this legislation ensures access for children diagnosed with pediatric acute onset neuropsychiatric syndrome, which is pans with pediatric autoimmune neuropsychpsychiatric disorders associated with streptococcal infection, which is pandas.
• 42:22
  So it then it says this legislation ensures access for children diagnosed with pediatric acute
• 42:42
  So you know, this is a tricky one because they can try to get around that, you know, saying that his diagnosis doesn't fall under the criteria.
• 42:53
  Um, it actually does.
• 42:55
  But it does, yeah.
• 42:56
  His secondary diagnosis is hands in pandas.
• 43:00
  Like it's that it's the one that's worked with the G.
• 43:02
  Uh, I can't even, I can't remember the um, I can't remember the diagnostic code right off hand, but like his diagnostic code, the one that begins with the G, it falls under that criteria.
• 43:13
  Um, so because that's his secondary because he did have some triggers in the past with strep and um all of the viruses triggering these symptoms, and then that escalated into autoimmune encephalitis, and and it can pans and pandas can absolutely escalate if it's not treated properly into autoimmune encephalitis.
• 43:34
  Um, and so that is why like his primary right now is the AE, but his secondary is in fact the pans pandas, and then his um his third diagnosis is the JIA.
• 43:46
  So we've got several things happening, but the beautiful thing about the IVIG is it helps all three across the board.
• 43:55
  That's what I was gonna say.
• 43:57
  Yeah, I mean, this is like a one-stop shop here because all three of those conditions would benefit because it it's a huge anti-inflammatory, it helps with the inflammation.
• 44:06
  So the JIA um can definitely be, but they're all like have some autoimmune components to it and inflammation components.
• 44:15
  So I mean, overall, it's just such a beneficial medication for him.
• 44:21
  Now it doesn't come without risks.
• 44:24
  So, you know, you understand that these medications can be helpful.
• 44:31
  You have to weigh risk versus benefits, and for him, the benefits way outweigh any risk.
• 44:38
  You know, this is doing more good than any harm.
• 44:42
  Um, you know, anything you're putting into your body, obviously you run the risk of some sort of reaction or side effect or or whatever.
• 44:50
  We're talking about an autoimmune condition without some sort of intervention, this can escalate and spiral.
• 44:58
  And I just want to make this very clear to the audience, just kind of pause here.
• 45:03
  Um, like we are talking about a patient that was stable for years, and I say stable a little loosely because Adam has a lot going on.
• 45:13
  So there's been some other things that pop up, but as far as the autoimmune encephalitis and a lot of his neurologic symptoms, he's been stable with a couple of days, right?
• 45:25
  Yeah.
• 45:25
  Um he's on a medication that was working, and there was there's zero clinical reason to stop.
• 45:33
  This decision is not based on medical necessity, and they actually state that in their letter.
• 45:39
  So this medications denied, access is now delayed.
• 45:43
  We have two weeks to get this done, two weeks to get this medication approved and set up for Adam.
• 45:50
  Um, so he's at risk.
• 45:52
  Like we are, I say we, but not you and I, but they are going to set this kid, and I I say kid because he's he's your kid, but he's right, not we're not talking about like a little little kid, but you know, when you're a mom, like your kids, your kid, you they're your babies forever, right?
• 46:13
  Yeah, no matter what age.
• 46:15
  You're really setting him up to be at risk and to decline and to go backwards.
• 46:20
  And you know, could you fix it later?
• 46:23
  Maybe, but you're gonna let him decline neurologically and regress and get worse, and then maybe he ends up in the hospital and they administer IVIG.
• 46:35
  Now you're stuck with a hospital bill.
• 46:38
  And you know, that's um, you're putting it back on medical, which medical insurance should be pretty pretty upset because the carbout pharmacy caused regression and caused him to need emergency services, which is is running up the cost of his health care.
• 46:55
  So it's just it's none of it makes any sense whatsoever.
• 46:59
  And they are trying to get out of covering this in any way possible.
• 47:04
  They are um, you know, recommending things that they're giving three different um scenarios to to different people, you know.
• 47:14
  Every time you call them, you get a different story.
• 47:16
  They're asking you to apply for financial assistance, which like let's let's be honest, unless this is in some fine print, which I would not surprise me at all if this is somewhere in the contract, but you shouldn't be forced to apply for financial assistance due to a vendor-driven denial of a previously approved medication, medically necessary medication, might I add.
• 47:41
  Um, and they are just blocking all of this.
• 47:44
  And then I asked them yesterday, I said, you know, what are we gonna do?
• 47:49
  Because you got two weeks to figure this out.
• 47:53
  And um, they didn't really have an answer, you know.
• 47:56
  They don't they don't have much of an answer.
• 47:58
  I think they're holding out because they know they don't have an answer.
• 48:03
  Um and I have had word that, you know, the the company, my husband's company, like even they are a little upset.
• 48:12
  Um I have been told that they're on the phone daily, not just for our son's case, but for multiple employees.
• 48:21
  Um do you think they're I think they're feeling the pressure.
• 48:27
  Um by the way, you can say we because you letting me on the show and even talk about this, like you're in the battle with us, and I appreciate you and your audience so much just taking the time to listen.
• 48:40
  And um, I they're just I don't know, girl.
• 48:45
  I I think um just the fact that he he has come so far.
• 48:52
  Um I don't understand that there has to be some human left in people.
• 49:00
  Left in people.
• 49:01
  Like, where is their human side?
• 49:01
  Like, where is their human side?
• 49:03
  Um, yeah.
• 49:03
  Um I replied back to an email last night, and I told this lady, I was like, if this was your son, you would be fighting this hard.
• 49:05
  I replied back to an email last night, and I told this lady, I was like, if this was your son, you would be fighting this hard.
• 49:12
  And I I told them, I said, would you like for me to send photos and videos of the Adam that regresses, like how he's going to look when you don't give us this medication?
• 49:12
  And I I told them, I said, Would you like for me to send photos and videos of the Adam that regresses, like how he's going to look when you don't give us this medication?
• 49:21
  I said, I can send it to you.
• 49:21
  I said, I can send it to you.
• 49:23
  I said, You want to see the boy that can't talk, that can't walk.
• 49:23
  I said, You want to see the boy that can't talk, that can't walk, and excuse me for being so blunt, but I told her that can't even.
• 49:26
  And excuse me for being so blunt, but I told her that can't even wipe his own rear.
• 49:31
  I was like, I'll send it to you if you really need to see it.
• 49:34
  Like if you need to see it, if the company needs to see it, Archimedes needs to see it.
• 49:37
  Like somebody needs to find their human side again.
• 49:42
  And I honestly think that, and this is my opinion.
• 49:47
  This is not fact.
• 49:48
  I am just speaking solely on things I've gathered, and it's my opinion, but I really do think Archimedes, because of their statement on their website with the med IQ.
• 49:58
  I don't think humans are making these decisions.
• 50:00
  I think it is an AI algorithm thrown out there and they pick and choose who gets what.
• 50:08
  Yeah, no, it's it's um it's out there that they use they use a um like an AI system, mediue to determine you know uh cost savings and like medical necessity and and things like that.
• 50:26
  So and you know, that's something that's becoming more and more real.
• 50:31
  I mean, I'll I'll be honest, if you think about it, you know, all the big insurance companies, you got Blue Cross Blue Shield, Aetna, United Healthcare, all of them, they are all using AI and hospitals, everybody's using AI, and there is an AI component when they're reviewing for um, you know, uh prior authorizations and that kind of thing.
• 50:55
  Because I I mean, is it possible to have a human do all of that in a timely manner?
• 51:00
  So I could see where AI could be useful, but to completely relate like replace your medical professionals with AI to make decisions like this, I think is really um really dangerous.
• 51:17
  But I I have a feeling we're probably gonna see more of that.
• 51:21
  Unfortunately, you are correct.
• 51:23
  Um I don't think, and and and I and I do think that this is absolutely driven by these contractoral.
• 51:36
  Oh, there I think it's driven by contract solely because the email last night she responded back to me the day she got in the office, and we emailed her last week, and she has been out of the office.
• 51:49
  And the reason I know that is because last week her automated system said, I'll be out of the office until blah, blah, blah, blah, blah.
• 51:56
  So I replied, there is no way nobody is extensively looking at Adam's caseload because it's very complex.
• 52:03
  Um, so our my husband's employer made this decision within just hours without really looking.
• 52:11
  And I know she couldn't have because she just got back into the office.
• 52:15
  Right.
• 52:15
  Archimedes, their denial letter is the same date as when our physicians sent over his uh clinical notes.
• 52:26
  So nothing, nothing's been thorough.
• 52:29
  Um, and it's my understanding that their clinical team possibly does not even have a physician on board because I was told by our home health that we aren't even eligible for a peer-to-peer because there are no physicians.
• 52:42
  You've got to be a physician to be a peer to speak to a physician.
• 52:46
  Yeah.
• 52:48
  And it it says on on their website, um, med IQ is technology that provides state of the art algorithms for identifying waste on medical specialty drugs that has been further expanded to incorporate advanced decision support and case management reflecting the unique characteristics of medical specialty patients and their claims.
• 53:14
  So it's right there.
• 53:15
  Like this is all being processed by AI.
• 53:18
  And so, you know, to give them um to give insurance companies a little a little praise because there's a lot to be fixed there as well.
• 53:29
  But insurance companies, they do have medical directors, they have they have doctors, they have nurses, and um, so AI might deny your request, you know, a prior authorization gets submitted, and maybe it doesn't meet criteria.
• 53:44
  There's not, you know, the diagnosis codes are wrong or whatever.
• 53:48
  But eventually, like a a person is reviewing these things and a doctor might speak with you.
• 53:53
  And I know that's frustrating.
• 53:54
  I've even spoken to our insurance company, our insurance company is not the problem.
• 53:58
  And I know that's probably mind-blowing to everybody.
• 54:01
  They're willing to step in and and keep paying for Adam.
• 54:05
  They have for two years, they don't have a problem.
• 54:08
  But now that my husband's company has this contract, this mandated cards.
• 54:14
  Right.
• 54:15
  Our hands are tied, the insurance companies' hands are tied, and everyone's wanting to move forward, but we can't because of a piece of paper.
• 54:23
  And these um, I forgot what I was gonna say.
• 54:28
  Go ahead.
• 54:28
  I'm sorry.
• 54:29
  So I was just gonna say the reason that they don't offer peer-to-peer is because our physician is not equal to AI.
• 54:36
  She's a lot better.
• 54:37
  And they're, you know, you can't have a peer-to-peer because they're they don't equate.
• 54:42
  They do not it, it's they don't equate, like it's not equivocal to for the AI machine to be like, hi, doc, you know, I'm making it funny now, but hi, doc, you know, we can't speak because we're not equal.
• 54:54
  Yeah, you're darn skippy, you're not equal because the physician, you know, our human brain is way better than some sort of AI algorithm that's dictating, you know, trying to be God for these patients.
• 55:07
  Yeah.
• 55:08
  And I am livid over it.
• 55:10
  You know, like a critical thinking skill that humans have that as much as they try to get AI to mimic, uh they're not gonna be able to replace human brain and decision making skills with with AI.
• 55:28
  Can it help?
• 55:29
  Can it assist?
• 55:30
  Can it help make things better?
• 55:31
  Yeah, I use it all the time.
• 55:33
  But I don't let it replace my knowledge and my um, you know, assessments and and critical thinking.
• 55:42
  Right, because our true wisdom as humans, I mean, that comes from God.
• 55:46
  Yeah, you know, he has given us the ability and you know, to think and to create, and you know, we are creating his likeness and in his image.
• 55:56
  And for us to have to submit our child to a man-made AI thinking tool, it's very appalling.
• 56:00
  Man-made AI thinking tool.
• 56:03
  It's very appalling.
• 56:05
  Um we're gonna keep battling.
• 56:05
  Um we're gonna keep battling.
• 56:10
  We are we are actually packing bags as we speak to take him back to Boston and we are gonna go and see what they say and see.
• 56:10
  We are we are actually packing bags as we speak to take him back to Boston, and we are gonna go and see what they say and see.
• 56:19
  We're not stopping.
• 56:19
  We're not stopping.
• 56:20
  No stone left unturned.
• 56:20
  No stone left unturned.
• 56:22
  I promise you that.
• 56:22
  I promise you that.
• 56:23
  No, we're gonna keep fighting.
• 56:23
  No, we're gonna keep fighting, and you have a lot of um a lot of people supporting and and cheering you on.
• 56:25
  And you have a lot of um a lot of people supporting and and cheering you on through all of this, and we'll keep updating our listeners.
• 56:33
  And unfortunately, we're out of time, but I just want to thank you so much for for sharing this.
• 56:37
  I know this isn't an easy conversation, but I think it's one that we definitely need to get out there because there are other people out there struggling.
• 56:46
  You know, and awareness.
• 56:47
  Yeah, yeah.
• 56:48
  Because just, you know, making people aware of what's going on, you're gonna be more um diligent and or dil diligent.
• 56:55
  Diligent.
• 56:57
  I don't know.
• 56:57
  I guess they have Dylan on the brain, but more diligent and like, you know, looking into your benefits and knowing exactly what's going on.
• 57:04
  But thank you guys so much for joining us today.
• 57:07
  This is the Nurses Report, and we will see you next time.
• 57:10
  God bless you all.
• 57:11
  Thank you.