The hidden cost of care PBMs, carve-outs, and denied treatment

0:00Music Welcome to the untold Take it deep breath, take the higher road That's why they always say As if they know the way They won't take it from me But don't ever doubt yourself It's like you're just a dream You made your own So can't get screened For people who will act with a never-ending force You'd never have the chance So watch your waiting for it The day has come my friend Cause this is what It's time and this is what Welcome back to the nurses' report on America Out Loud I'm your host Ashley Computer, registered nurse

1:00And functional medicine practitioner Today's episode 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 So today we're going to dive more into Pharmacy Benefit Managers or PBMs And something called Carvouts And these are entities quietly controlling what medications you can get When you can get them And sometimes whether you get them at all And we're going to walk through exactly how this system works And how it impacts real patients I'm joined today again by Amy Whitlock Who's experiencing firsthand Through a case involving a specialty pharmacy carve out Trying to get her son's medication Amy, I'm so glad you're here with us today Thank you, thank you So before we get into everything

2:01I know if our listeners didn't listen to last week's podcast We talked about this a little bit And we talked about just denials From insurance companies and how that can impact your life directly And what a struggle that is Today we're kind of going more into the pharmacy benefit managers And Carvouts because they're really impacting a lot of people's lives And their ability to get treatment So before we go into exactly what's going on with you I wanted to kind of explain what pharmacy benefit managers are 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 So it was supposed to be for the benefit of the consumer

3:01And they were also to help insurance companies manage medications So it was supposed to be this great thing Essentially they were like a middleman And then they were working for the insurance companies But over time something changed Those independent pharmacy benefit managers were acquired by insurance companies And now the biggest ones are actually owned by the insurers themselves So CVS CareMark express scripts and Optamar X So there is no longer really like a middleman per se The middleman is actually part of the bigger company They're all a part of the same system Right And that matters because now they control which medications are covered Which pharmacies patients can use And whether a medication gets approved at all

4:01So before you got into all of this Did you know what a pharmacy benefit manager was? Was that something that you just knew about? No idea 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 And it will take your breath away It will give you sleepless nights The fact that this broken system Has the authority that they have? It's mind blowing to me There's so many people getting left by the wayside And it's not fair 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

5:01Because when you've gone through it And we're still going through it You go through it once Oh, we've got this You go through it again Well, maybe won't be as bad this time And then you go through it for the third time And it's just like a slap on the cheek I don't even have the words of this morning I'll be honest Yeah And the reason I asked was because I mean even being a nurse I didn't really understand what pharmacy benefit managers were I just knew you had insurance And it covered pharmacy So I didn't realize until I started working more in the system That these were separate Who covers your medical insurance is not necessarily Who is covering your pharmacy benefits And sometimes it's under that same umbrella company And other times it's completely outside of it So that I think can cause an obstacle too

6:04Because 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 It does And I mean it wasn't always this way for us We for a couple of years Everything just went under medical And I know honestly I mean I know people give insurance companies a bad rap But it really is at the insurance company this time It is falling solely back on my husband's employer And because they have created this mandated And I stress it's mandated Carved out specialty pharmacy benefit And they're dictating Literally the livelihood of people And not dictating it well

7:04No, and so I had never... I'd heard of pharmacy benefit managers, right? So that's something I knew about This carve out pharmacy that was something completely new to me And so I had to go to Google and chat GPT And try to figure out exactly what this was Because I just never even heard the term I kept hearing everybody refer to it as a carve out And I knew as a specialty pharmacy I had no idea what a carve out was So basically Instead of your pharmacy benefits being managed Within your regular insurance plan It separated out and handed to a completely different company So now instead of one coordinated system Now you've got multiple systems managing the same patient And in this instance You have your medical benefits with one company

8:06You have your pharmacy benefits with another company And then you have your specialty pharmacy benefits Through a separate company And this company is a carve out called Archimedes And employers are doing this Not to hurt their employees I don't know and maybe you can speak better to this I don't think there's somebody in an office Somewhere in corporate saying What can we do to harm our employees? I think they look at it from a business standpoint And say where can we save money? And still provide services to our employees And that's where this carve out pharmacy comes into place Because their purpose is to save money Like that's for the employer, not for the patient So this was something totally new to me

9:10And I work in the insurance world So I don't think they're new from what I understand But they are just becoming more popular Well, as you know, the medication that we are fighting for And actually just fought for We just had this battle back in February That's not long And then they come back and try to You know, that they've literally taken the medication So you know this medication is not new Our son's been on it for two years And my husband's company They actually helped us fight for the medication the first time Two years ago I don't think they went into this thinking We want to pull everyone's benefits and just make everybody Sick again I don't think that was their intention I think overall like every company Their goal is the bottom dollar to save money

10:11And then the reason I say this Like I don't I don't think they fully grasp what they themselves were getting into when they created this contract with Archimedes And the reason I say that is because when I called The big office corporate to my husband's company and explain to them what was going on They were astonished and they said Well, you know, we've got our other side We've got our other specialty pharmacy Can't we just you know foul this medication under that one Because it's right way and I was like nope Like you guys signed the mandated contract And this medication And what's so bad the medication that Adam needs is not even in their formulae Archimedes formulae and they're not even giving us an alternative And when I say this to my husband's company I don't think they're Pretending to be in shock They're literally like they don't know themselves And it's my understanding

11:12As of this week like they're very upset With the way things are being handled not just for our family but for multiple families And I think they're trying I think they're just juggling a piece of the puzzle that they didn't know existed Um I don't know that's that that's my personal opinion But just because of their reaction that we had you know from them two months ago Like I don't think I think all of this has been very unintentional But nail that they're seeing Really what the contract entails Um I think they probably feel a little Styfold right now Yeah and I I think all of us I mean if you just apply this to kind of your everyday life right Like we all get sucked in by marketing And so Archimedes job is to promote their business

12:12And gain clients 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 I guarantee you we can save you money You know now I don't know this for sure But they got to have something like that right Well honestly their website Their website speaks to It definitely does Honestly you you can say that because The website is blatant I actually have them Hold it up right now so let's just read from their website So you know to an employer this could sound very appealing Because they they're probably not really thinking of the real world Consequences That could happen to their employees They're seeing because basically Archimedes is saying You're being Kind of screwed over for lack of a better word

13:12Telling the employer you know what they're gouging They're getting too much money out of you A lot of these meds There's a cheaper alternative they should be using They could be using generics Or it's not even medically appropriate We go in and we clean all that up and save you money So per their website It says take back control of your benefit Archimedes is helping Plan sponsors address the rising cost of specialty medications Through our unique specialty drug IBM 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 And their website goes on I mean this is the theme

14:12The whole theme of their website is how They are going to save the employer money There is not much on here that says What a benefit it's going to be For the actual consumer So you know i don't know how they do their marketing But if you're pitching this to Tyson Right Or a big company like you know Home Depot and Walmart And all these all these big companies out there Going to jump on board and say Well yeah we want to save money And still provide coverage to our employees Right But then when you get into 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 almost like they're auditing All the claims that they have And they're going through and saying You know This this drug shouldn't be used It's not medically necessary

15:12Or we don't want you to use this drug We want you to use this other drug And these are just new requests These are medications that people have been on for a long time And I can say that with a hundred percent certainty That there are more people having the same problem You know people getting maintenance chemo That they don't cover that medication anymore Infusions for Crohn's disease being denied All of these things And some of them they're providing some alternatives for people Like you know well we want you to use this other medication Not taking into consideration Maybe they've tried similar drugs Or they've already tried those medications And they haven't worked for them And they're like that it's cheaper And they want you to go that route And that's kind of what they've done For Adam With another medication that he has They want him to use it

16:12An alternative medication that's cheaper More cost effective Right But also Well just so that your listeners know Since last week's podcast We only had one denial last week Now we have two And these are medications that are not new to Adam These are medications That we know Positively affect his condition Like I mean they literally keep him functioning And the newest denial Is Coming from This standpoint of we want you to try Try this cheaper medication Well the thing is When you've got an immune dysregulated child You cannot toy with their immune system So there's different Immune suppression medications And there's different classifications And you can probably speak Very well to this

17:12Because 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 Right now he's on something known As an interleukin six It's like a protein blocker And they want to put him on a TNF Which affects your tumor necrosis factor And I know that's A lot of medical jargon But basically in a nutshell They want him to swap To a completely Different version of medication That will affect a different Side of his immune system Which will Invertedly also trigger The autoimmune subalitis Because you've got You've got this domino effect So it's not one denial We are now facing two They have given us an alternative for one But like I said it affects

18:12A different portion of the immune system And it comes with very Unwanted Oh my gosh He could lose his hair on the medication I know families that have used That medication because they have to It's a cheaper version in their kids' hair You know what I mean Why rock the boat And make them miserable But also make them lose their Confidence I mean can you imagine this boy That's been sick for seven years We finally recover him From so many Events in his life I mean we're talking about the kid He quit walking He quit talking Yeah I mean he stopped living This subalitis that he had It literally wiped out his academic memory I mean we have recovered him In more ways than they can ever have them And they don't care to understand it Otherwise they would be on the phone with me Instead of sending me

19:12A letter that says Right Like that's the one thing That really threw me off Was because I know working in the insurance field There's always an appeal You might not be successful But there's always a route To push back And this goes for Almost anything in the medical field If you are at the hospital And they want to discharge you You can appeal your discharge You know if 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 And appear to appear You know all these things And all of a sudden You get this letter and it says Sorry there's no appeal And that was just really mind blowing Because It didn't give you any other option

20:12Except for a good luck I hope you can find the medication on your own So let's talk about this medication Real quick because you know for some people Like for instance One of the number one Medication denials that i deal with Is for pro tonics This simple Medication For acid reasons I'm sorry it's not exciting But it's almost laughable Because like seriously Yeah No this was like the number one thing That i would get why won't you cover You know why won't my benefits cover Um pro tonics And it's like well because you can buy it over the counter So a lot of insurance will not cover things That you can buy over the counter So your doctor might prescribe like Vitamin D and your pharmacy benefits Will say no you can buy vitamin D over the counter And they'll deny it These were simple things that i could fix Right like you can go to our human cost plus And you can get three months supply for like

21:14Nine dollars it's crazy So these were simple things But the the pharmacy gave you an alternative It was like we don't cover it Because it's over the counter Here are the medications that you can take Right well it was always like some sort of guidance And with this it was very closed door Like right You you don't get this medication Isn't 20 dollars over the counter Like like omeprosol is This medication is 38 Thousand dollars per infusion Right So there's no option to say Well i'm just going to go buy it You know right Because he gets it monthly So that's a lot of money Even like a go fund means is not going to help in that regard You know And we get it We even approached our committees And I was like okay what is in your formulary

22:14Well we don't know I don't have that information in front of me And it's my understanding that on their website They give you Options of different medications Different formularies But when we look up the Gemicard The IVIG We can't find anything So that's why we really are like we are advocating Around the clock for our son So that my husband's company will come in And allow this It's a simple fix Allow this to be placed back under medical And apparently it's not a simple fix Based on the letter that we received late last night After hours How they slid in This heart breaking letter You know after hours late at night With no way of contacting You know The employer that late hour But I was so confusing that the letter doesn't even state One thing about the IVIG It's only talking about his immunotherapy The immunotherapy is important

23:14But between the two The one that keeps some functioning Is the antibodies Is the IVIG It's totally diverted The conversation to Well you didn't get it because of this And that like they Archimedes even blamed it on our physicians They were like your physician Did not even reach back out to us You know we were trying to give They were not trying to give us an appeal I've got the letter In my hand and it says They told us because it was experimental But they told our home health Because it wasn't in the formulary So they're giving different stories to different people And um That's That's very unprofessional And when they're toying With the well-being Of your son It's very disheartening Everyone has the right to thrive We should not have to just simply survive We should be living and enjoying life

24:14And they're I feel like they're That's the only way to get the benefits of I can just be blunt Yeah Well and Adam fills that way as well I think He even said that You know Which You know 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 It's uh Well it's really So it's like Being through your home infusions And I had a lot of clients That I did iVIG for them And a lot of different Nurologic disorders Autoimmune disorders I would say I probably the bulk of my Clients that I personally did Were um They have meostenia gravas or multiple sclerosis

25:14like lifelong, right? There are instances where people will get IVIG for like Guillain-Barré syndrome where it's not going to be, it might not be lifelong, but it's part of a treatment. So it's primarily used, it's a therapeutic treatment that's made from donated human plasma. So it's used to treat immunodeficiencies, autoimmune disease, and inflammatory illness by providing like healthy, concentrated antibodies. Yes. So it's a really cool medication. I think probably one of the the things that I get frustrated with about this medication is it's limited on what it's FDA approved for. So we all know that medications are used off-label all the time, and you repurpose drugs, right? We find additional purposes for these drugs all the time, and so IVIG is used off-label a lot, but insurance doesn't like to approve it for off-label

26:20because it's expensive. So a lot of the times the there's strict criteria that they have to have a diagnosis that it is FDA approved for. And I'm going to have to pause for a second because we're already up against a break, and I almost completely forgot because I get really into this because I I do too. I'm so upset right now, but so we're going to pause real quick, we're going to go to break, and then when we come back, we'll we'll keep talking about IVIG, and then also why it helps Adam in his condition, and then dig a little more into these carve out pharmacies. So hang out with this. We'll be right back on the nurses report. Your heart is crucial. Are you supporting it as you age? Try the wellness company's healthy heart formula with touring, Dribose, and Coenzyme Q10. Designed by Dr. Peter McCullough, healthy heart helps boost heart function and support cardiac strength. Get 20% off your first order plus free shipping at twc.health forward slash out loud with code out loud. Struggling with your health, energy and constantly feeling hungry,

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28:24first step into a thousand years of darkness. Those are the words of number 40. Ronald Reagan shines bright as America approaches 250 years. America out loud dot news is that place to awaken your heart, soul, and mind to the out loud truth. That's the nurse's report on America out loud. I'm your host Ashley Caputo, registered nurse and functional medicine practitioner and today I have an amazing guest again with me. She's like a regular on the show Amy Whitlock and before the break we were talking about pharmacy benefit managers the PVMs and also these carve out specialty pharmacies that employers have been using that is saving them money but causing a lot of havoc in people's lives. Before the break we

29:27were talking about because the medication that we're having difficulty getting for her son Adam is IVIG. We were just talking a little bit about what that medication is. Basically it's used for a lot of immune mediated neurologic and infectious conditions. It is a really you know cool drug so before the break I was saying you know it's not FDA approved for everything that we know that it's helpful for and that was one of the hurdles that we faced with Adam in the beginning was he didn't really have a diagnosis that warranted the IVIG. We knew we had an autoimmune condition but they had been quite pinpointed you know what it was. So what was he actually diagnosed with and we're treating him for now? Well first of all thank you for explaining that to the audience I get so passionate and just full of zeal when we discuss this and oftentimes I forget that people just

30:30a lot of people don't know they don't know what I didn't know the medication existed and so but I think as a whole people will 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 carveouts are getting more popular now but um so thank you for explaining all of that because sometimes I just go on a rampage and you know the mom of air starts to roar. Yes no I understand I feel the same way and then I have to remind myself that maybe if not everybody you know knows what we're talking about so. Right right so getting back to your question originally we had no diagnosis he just kept declining so I mean I guess the easiest way to explain it is just to give you the sequence and so he was on I mean with therapy

31:31for a condition that's it's just an umbrella term for joint and tissue inflammation it's JIA and so he was on immunotherapy for that and even back then we were you know fighting for his treatments and so our insurance at that time wanted us to try different medication here same old song and dance and so you know we did that's before we knew that we could fight that's before we knew how will advocacy services you know help in these situations and during that swap and as a matter of fact it's it's it's one of the very medications that was suggested to us recently it triggered his immune system and he also called a funky virus called the estero virus and he just kept declining neurologically so about eight months rocked on and we made multiple trips to the local children's hospital and I kind of knew

32:41his symptoms were pointing towards autoimmune asapolitis but they were like no mom we you know who am I a mom I don't know anything no mom I don't think so and so we ended up taking him to Boston Children's Hospital and they that's who formerly diagnosed him and unfortunately they agreed with every test that was ran on atom locally but they cited to me it was just eight months too late because you have to catch these went within cephalitis like you've got to catch these antibodies to like when you're doing the lumbar puncture like you've got to catch it at at the rat time but so Boston has tons of studies and their frontline treatment is IVIG so we came home and we did everything that we knew to do like we begged for this treatment and we continuously got a denial that he declined so badly in 2024 I take him to the hospital and I said give it to him

33:51we're going to lose him and so his doctor within the immune dysregulation department came out and she said you know you don't have approval I said I don't care I said we're gonna lose our baby he's still my baby I don't care how big he is so they agreed on the way home and this is not the this is not the full dose 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 so it basically yeah signed away the farm for one infusion and on the way home from that small dose infusion he spoke to us and we knew so we called the insurance company and we called the hospital and this finally the hospital was finally convinced at this point and so they started fighting

34:55we started fighting ballstones you know they're their recommendations and their official diagnosis came down and we finally we finally got it but 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 good punch I I'm livid you know I'm disgusted with the company and the way they're handling it like like you're not even human like there's no human aspect to all of this but 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 used neutralized pathogenic antibodies and modulate immune

35:59response and we're not too experimental like they say yeah it's a first line it blatantly says experimental I actually had to send our denial letter to a husband's company because Archimedes is telling them something totally different I sent them a letter at the copy of the letter last I was like they're lying to you like they're bold-faced lying to you and I just I don't 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 in-church 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 for one I was told I think there's

37:05ma'am I think they're like the employer itself is kind of stuck they're in a contract so they are they are going to have to make some sort of exception to get out of this right well and I yeah the the letter the email we got last night basically stated there there was nothing they could do because of the contract because of the regulations that are built in with Archimedes so we aren't sure what's going to happen but 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 bigger than any bureaucratic red tape that they can slap on on this case and we've asked everyone to pray so you're listening audience those that are believers and those that you know you know without a doubt prayer works we ask you to pray on this behalf

38:12yeah we got a lot of prayer warriors out there so definitely keep Adam in your prayers we are fighting um you know we're gonna keep fighting obviously we're not giving up right you know it's going back to these um carve out you know they were created because our systems broken so if you really look at the bigger pictures like this they were created because the pvms are broken you know and but 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 save that but most of your pvms and your case managers and stuff like that will look on your behalf to try to help find cost savings because

39:14sometimes 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've 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 see if you can get this medication for free right that is correct and that's what I do not understand because they have as previously grandfathered in because Adams but 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

40:18there is no appeal option because it's experimental and it's not um we we even have from and and this this is for this is for both his infusion so he has the amino um the immunotherapy and we have the antibodies the IVIG so uh IVIG with insurance our copay is 3000 a month the um the obeyed except his immunotherapy the copay is 1000 per month so that's $4,000 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 copays and we were set like everything was set to move forward and then now they're

41:20like I don't I don't understand they're they're just they're they're they're jerking it out from under him even though we had approval February like we had the little bottle with them it was a big bottle 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 diagnoses sort of like atoms that they've mandated this medication in the state of Georgia so I don't like very even worrying around the state mandate that our governor set for children like Adam it's funny because I I literally just pulled that up so um starting January 1st 2026 Georgia SB 5 mandates insurance coverage for pans and pandas treatment including IVIG requiring compliance with clinical practice guidelines so it then it says this legislation ensures access

42:27for children diagnosed with pediatric acute onset neuropsychiatric syndrome which is pans pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection which is pandas 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 um well it actually does but it has his secondary diagnosis is pans and pandas like it's that it's the one that's hard for the G 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 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 right these symptoms and then that escalated into autoimmune syphilitis and it can

43:28pans and pandas can absolutely escalate if it's not treated properly into autoimmune syphilitis and so that is why like his primary right now is the AE but his secondary is in fact the pan's pandas and then his um his third diagnosis is the JIA so we've got several things happening but the beautiful thing about the IVIG is it helps all three across the board that's what I was going to say yeah I mean this is like a one-stop shop here because yeah all three of those conditions would benefit because it's a huge anti-inflammatory it helps with the inflammation so the JIA um can definitely be but they're all like have some autoimmune components to it and inflammation component so I mean overall it's just such a beneficial medication for him now it doesn't come without risk so you know you understand that these medications can be

44:29helpful you have to weigh risk versus benefits and for him the benefits weigh out weigh any risk you know this is doing more good than any harm um you know anything you're putting into your body obviously you run the risk of some sort of reaction inner side effect or whatever we're talking about an autoimmune condition without some sort of intervention this can escalate and spiral and I just want to make this very clear to the audience just kind of pause here um like we are talking about a patient that was stable for you and I say stable a little loosely because Adam has a lot going on 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 an absolutely right yeah um he's a little medication that was working and there was there's zero clinical reason to stop

45:33this decision is not based on medical necessity and they actually state that in their letter so this medications denied access is now delayed we have two weeks to get this done two weeks to get this medication approved and set up for Adam um so he's at risk like we are I say we but not you know but they are going to set this kid and I say kid because he's he's your kid but he's right no we're not talking like a little little kid but you know when you're a mom like your kids your kid they're your babies forever right yeah no matter what yeah really setting him up to be at risk and to decline and to go backwards and you know could you fix it later maybe but you're going to let him decline neurologically and require us and get worse and then maybe he ends up in the hospital and they administer IVIG now you're stuck with the hospital bill

46:38and you know that's um you're putting it back on medical which medical insurance should be pretty pretty upset because the heart disease caused regression and caused him to need emergency services which is like the cost of his health care so it's just it's none of it makes any sense whatsoever and they are trying to get out of covering this in any way possible they are um you know recommending things that they're giving three different um scenarios to to different people you know every time you call them you get a different story their house knew 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

47:39might I ask um and they are just blocking all of this and then I asked them yesterday I said you know what are we going to do because you got two weeks to figure this out and um they didn't really have an answer you know they don't they don't have much of an answer I think they're holding out because they know they don't have an answer um and I have had a word that you know the the the company my husband's company like even they are a little upset um I have been told that they're on the phone daily not just for our son's case but for multiple employees um so do you think they're I think they're filling the pressure um and by the way you can say way 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 and um I they're just I don't know girl I think um just the fact that he he has come

48:50so far um I don't understand that there there there has to be some human left and people like where is their human side um yeah 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 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 I said I can send it to you 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 wipe his own rear yeah I was like I'll send it to you if you really need to see it like if you need to see it if the company needs to see it if Archimedes needs to see it like somebody needs to find their human side again and I honestly think that and this is my opinion this is not fact I am just speaking solely on things I've gathered in its my opinion but I really do think Archimedes

49:54because of their statement on their website with the mid IQ I don't think humans are making things these decisions I think it is an AI algorithm thrown out there and they pick and choose who gets what yeah no it's it's um it's out there that they use they use a like an AI system met IQ to determine you know uh cost savings and like medical necessity and and things like that so and you know that's something that's becoming more and more real 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, Etna United Health Care 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 prior authorizations

50:54and that kind of thing because I I mean is it possible to have a human do all of that in a timely manner so I could see where AI could be useful but to completely relate like um replace your medical professionals with AI to make decisions like this I think is really um really dangerous but I have the feeling we're probably going to see more of that unfortunately you are correct um I don't think and I do think that this is absolutely driven by these contract role oh there hmm 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 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 so I replied there is no way

51:58nobody is extensively looking at Adam's caseload because it's very complex um so our my husband's employer made this decision within just hours without really looking and I know she couldn't have because she just got back into the office right our comedies their denial letter is the same date as when our physicians sent over his clinical notes so nothing nothing's been thorough 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 you've got to be a physician to be a peer to speak to a physician yeah 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

53:02further expanded to incorporate advanced decision support and case management reflecting the unique characteristics of medical specialty patients and their claims wow right there like this is all being processed right 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 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 there's not you know the diagnosis codes are wrong or whatever but eventually like a person is reviewing these things and a doctor wants to speak with you and I know that's frustrating but I even spoken to our insurance company our insurance company is not the problem and I know that's probably mind-blowing to everybody they're willing to step in and and keep paying for Adam

54:05they have for two years they don't have a problem but now that my husband's company has this contract this mandated 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 and basically um I forgot what I was gonna say go ahead I'm sorry 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 she's a lot better yeah and they're you know you can't have a peer-to-peer because they're they don't equate because they do not it's they don't equate like it's not equivocal too for the AI machine to be like high-dark you know I'm making a funny now but high-dark you know we can't speak because we're not equal yeah you're darn skipping 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 yeah and I

55:08am living a critical you know like a critical thinking skill that humans have that as much as they try to get AI to mimic you're not going to be able to replace no brain and decision-making skills with with AI can it help can it assist can it help make things better yeah I use it all the time but I don't let it replace my knowledge and my um you know assessments and and critical thinking because our true wisdom as humans made that comes from God yeah 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 and for us to have to submit our child to a man-made AI thinking tool it's very appalling um I we're gonna keep bad link we are we are actually

56:12packing bags as we speak to take him back to Boston and we're gonna go and see what they say and see we're not stopping no stone left unturned I promise you that no we're gonna keep fighting 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 and unfortunately we're out of time but I just want to thank you so much for for sharing this 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 I have to say you know making people aware of what's going on you're going to be more diligent or diligent I don't know I guess I have villain on the brain but more diligent and like you know looking into your benefits and knowing exactly what's going on but thank you guys so much for joining us today this is the nurses report and we will see you next time God bless you all thank you