Building The Noise with Sally Nix: EPISODE 017

SPEAKER_04 0:00

And my doctor and I had arrived at uh IVIG after failing almost everything because I have an autoimmune hypersensitivity uh to things and I'm allergic to things. I react. I had Stevens Johnson syndrome, which is deadly for a lot of people. Um, so this was a safe, safer alternative. And um I had it for six months. I found myself in remission, walking about three miles a day with Jon Snow, my service dog. Things were going great, and then my insurer decided to stop paying for it. They threw retroactive denials. Um, I was fighting huge bills and fighting for the care that I knew made a huge difference. And what happened is I ended up, my story went national.

SPEAKER_00 0:57

Welcome to the Building the Noise Podcast.

SPEAKER_03 1:00

Ladies and gentlemen, welcome to the Building the Noise Podcast. My name is Matt Teresco, and with me today is a dear friend, an amazing patient advocate, Sally Neely Nicks. Sally, there's so much to talk about to introduce you, but it would do a complete injustice and steal from the thunder uh to go into your background. But let's start here. How did you find your way into this shit show that we call healthcare?

SPEAKER_04 1:30

Um, out of necessity, really, as a patient rights advocate. But uh I'll never forget the date because the date was 111111. That was the day my life changed. Um, you know, not to get into like the the big full nitty-gritty of everything, but it took years and years to figure out a diagnosis. And, you know, I live with invisible illness, and that whole, oh, but you don't look sick is always uh, you know, something that I uh battle with people um because they don't even think, you know, my service dog is mine, they think I'm a trainer. Um, so my voice, I had always had the voice of uh talking about invisible illness and pain, because pain has been a huge part of what um I I deal with. But I found myself uh in the hospital with meningitis. Uh we now know it was more autoimmune encephalitis. Um which uh is is you know is different. Um, but I've been through five brain surgeries, I've been through five spinal surgeries, I live with neurodegenerative disease. We now know uh that I have multiple sclerosis because it takes years and years to get a diagnosis like that. Um, I have another rare autoimmune disease, but with things like multiple sclerosis, it brings in other issues like my trigeminal neuralgia, which is an extreme pain condition known as the worst pain known to mankind. It's it's called the suicide disease for a reason. People can't live with it. So I fight my every day. I never know what it's what every day is you know going to bring. It's a different, you know, roll of the diet. And um I I do live in immense pain. Um right now the heat, you know, is bothering me. It makes my intracranial pressure and that encephalitis go up. So um I found myself um facing a treatment called IVIG. And my doctor and I had arrived at uh IVIG after failing almost everything because I have an autoimmune hypersensitivity uh to things and I'm allergic to things. I react. I had Stevens Johnson syndrome, which is deadly for a lot of people. Um, so this was a safe, safer alternative. And um I had it for six months. I found myself in remission, walking about three miles a day with Jon Snow, my service dog. Things were going great, and then my insurer decided to stop paying for it. They threw retroactive denials. Um, I was fighting huge bills and fighting for the care that I knew made a huge difference. And what happened is I ended up, my story went national. Um, KFF Health News published not long ago.

SPEAKER_01 4:46

What year was this?

SPEAKER_04 4:48

Um it uh it's I started fighting around 2022, but 2023 is when the stories really hit. And um, I was one of the original groups of people who were going online and talking about the wrongs of insurance and the battle that patients face every day. And this was this was before that was really becoming the norm now. And um I I after the first story ran, uh, I heard from so many other patients the horror stories, and they did not know how to fight, they did not know what to do. And I I felt a responsibility because I had educated myself, so I began teaching other people. I had that voice. But the one thing that I disagreed with um in that article, but it was talking about how patients are going online to shame insurance companies. That was never my intention. I was trying to hold them accountable. I'm all about accountability with them. So that's what propelled me into this world, and my voice just grew. My education grew. Uh, I I realize now, you know, going through college and the classes you take, I realize now that I've had almost a master's education in healthcare and insurance and understanding how to fight that so many people.

SPEAKER_03 6:21

I've seen the dissertations. I've seen the dissertations. I know what level of education you have.

SPEAKER_04 6:27

Well, thank you, Wanda McConnell, my English teacher who that has never left me. And she gave me that firm foundation because yes, you've read some of the things that I've had to send, the footnotes, the clinical articles that I've had to share. And what happened is is I like I said, I felt that responsibility to help educate other people because I think of the elderly person that's sitting there getting a denial or being told they can't have this medication because they have to try this first for step therapy. I realized that I had a voice to say, hey, this is what you need to know when you're fighting an insurance company, because I did. I went toe-to-toe with two very large Blue Cross Blue Shield entities. And I went toe-to-toe with the CEOs, with the medical directors. I was emailing them directly and talking about the ills and the wrongs that their denials were causing. And, you know, there is, Matt, you know, from the world you've been in, there is a real human cost to these delays and denials. And that denial with IVIG irreparably damaged my neurological, you know, my my health, that I will never get that back. Um, so that's I had a responsibility I felt.

SPEAKER_03 7:57

Let's let's go back. You said 20 uh November 11th, 2011 was the day that kind of goes down in history for you as a day everything changed.

SPEAKER_04 8:07

I'll never forget it.

SPEAKER_03 8:08

Was that your diagnosis?

SPEAKER_04 8:10

Um, no. That was that was the day that I got sick. I had never had a headache a day in my life. Other than, you know, if you if you ran a fever or you had the flu, you might have a little headache. But I never had a headache. I woke up with that scary thunderclap kind of headache. My my children were still young. They're they're adults now. Um, my oldest was a senior in high school, and my youngest was in elementary school, and it was Veterans Day. They were out of school. And I remember waking up thinking, I can't the lights bother me, noises bothering me, my head, what is going on? And my oldest daughter pretty much saved my life because I said, I need, I need to go to urgent care. I need to go because I didn't think at that point in time it was emergent. Um, my personal doctor happened to be working at urgent care that day. And he took one look at me and said, You need to go across the street to the hospital. And that's where I had the CAT scans. I had, you know, they were ruling out a bleed, they were ruling out all these other things. And then that's when I also had my first of I've lost count of like 20, um, the first spinal tap, which came back, is meningitis. And so I was admitted then and I was in the hospital off and on for for about six weeks. So I remember coming home on Christmas Eve. It was crazy. So that was the start of this giant snowball. I began losing my vision, which that was my uh first brain surgery. Um, I had to have the ventricular shunt uh put in, uh, which the other two brain surgeries were done at Johns Hopkins two in one week, one on a Monday and one on a Friday, because we had to get the shunt out because I kept getting meningitis like two years later. I kept getting it. I kept getting it. And they thought that the shunt was holding infection. And now we know that there were some, you know, there were some different issues going on with that. Sure. So yeah, I had never had a brain MRI before or a CAT scan on my head before November 11th that year. And that's when we saw some lesions on my brain. And I remember I've got the best specialist in the world. He's been with me since day one, and he has advocated for me. He has been the physician that everybody deserves to have. And I remember his demeanor, how quiet he was, he knew my head hurt. And he said back then, he said, I don't know what we're looking at with these lesions. It could be multiple sclerosis, it could be a number of things. So it took all those years, uh, probably, I want to say, till about oh, 20, maybe about 2018, somewhere around then, to really figure out that, hey, there are other things happening with blood levels, the IgG, IgA, and all the different things that kind of say, hey, you've got autoimmune disease.

SPEAKER_03 11:25

I mean, what were you thinking at that point in time when you get this diagnosis? You know, obviously you didn't have the education at that point.

SPEAKER_04 11:33

No, I didn't.

SPEAKER_03 11:34

You know, how did how did you even know where to turn?

SPEAKER_04 11:37

Um I was a researcher by nature. Um, I I look at my, you know, my education, what um what I learned to do. And so I I don't believe in being Dr. Google and diagnosing yourself with things because that can be very harmful. But I do believe in arming yourself with enough information about what you've already been diagnosed with so you can become your own best patient advocate. And I am fully disabled. Um, it it was a bitter pill for me to swallow because I worked since I was 15 years old. But in my work, I worked for nonprofits as a nonprofit strategist. So advocacy was a lot of what I did. And I I I even I go back and look at uh a thing, a project that I did with Habitat for Humanity. And uh one of the other habitat um people, we brought in these young single women and we did education with them. We did healthcare education. I talked about how it was important to stay up on blood work and all of these things. And what we found at that point in time is all the people that did not know and had not been educated at that time. So advocacy was always woven into what I do. And I always preached, I worked with a lot of breast cancer patients. Um, I worked, um, you know, I would go to some to some appointments with them because I had been trained as an advocate. Yeah. And I always spoke and said, you've got to learn to be your own best advocate. And then that's when I had to walk the talk and and be that for myself. So it it I feel like it was laying dormant in me. The advocacy was laying dormant in me, and it woke up when the disease state woke up.

SPEAKER_03 13:43

Sure. And now you are a force to be reckoned with. I mean, you're uh for for folks who are just beginning to know who Sally is, check out LinkedIn, uh, TikTok, Instagram. You'll find the most recent post. Let's see, it's uh today's the third, so it was September 2nd. Uh it was the first.

SPEAKER_04 14:05

It was actually the first.

SPEAKER_03 14:07

Oh, was it the first on the for that post? So September 1st, go back and take a look. Uh Sally had had a uh an incident, so to speak, with the insurance companies that we'll talk about here in a bit. Yet another. Um, and we'll dive into that here in a second, but well worth you understanding just how much of an education she's given herself and how much she can help others as well. And I would also be remiss if I didn't talk about the work that you're doing in health policy in North Carolina too.

SPEAKER_02 14:40

Yes.

SPEAKER_03 14:41

Because you didn't just stop you know with yourself and other patients. You're you're trying to change law.

SPEAKER_04 14:47

Yeah, I I am. And not just North Carolina, but nationwide. But North Carolina has had a really interesting kind of test case with with healthcare reform. We haven't necessarily excuse me. We haven't necessarily been in the news a lot for the great things that that North Carolina has done at times, but healthcare reform has been one of them. I never ever wanted to be in any type of politics. Um, it it was part of my my family. My grandfather was a judge. He was also in the state legislature. And so when I started learning about the reform that was happening in North Carolina, it was prior authorization reform. It was PBM reform, the the pharmacy benefits manager uh reform. And uh I started emailing, calling, talking to all of the state legislators and anyone that would listen to me because my story had been you know spread nationwide, but I could also speak to the cost of the patient and what happens when care is denied. So I found myself in front of legislative committee um giving my story with lobbyists around. I was at that time, I was the only patient. There were people, of course, the the lobby, uh the healthcare lobby, the insurance lobby. There were there was a rural uh doctor talking about how hard it is for small practices to spend all their time on prior authorization. And you know, small Western North Carolina. Um there were people there giving uh I guess giving testimony based on employers, you know, the brokers of the insurance. They were very much against the reform. Uh so there I've there I found myself knee deep in politics that I never wanted to be in. And you know, representative, I always talk about representative Tim Reeder because he you talk about somebody that does amazing work in healthcare reform for North Carolinians, and that's him. Uh uh Grant Campbell was also part of this reform, Representative Campbell. The interesting fact was the two of them are both physicians. So they're physician legislators who know what's going on as practicing physicians and what they're dealing with with their patient. And I can remember being in that legislative committee hearing uh Representative Dr. Grant Campbell talking about um diagnosing a woman with gynecological cancer and her life-saving surgery being denied by a psychiatrist. And so when he said that on the floor, you could hear the you know, the gasp from the other legislators, like you've got to be kidding me. And one legislator even said this reform isn't even enough. We need more than just this. So, you know, having voices like that who can really articulate to their fellow legislators based on their experience and their careers really helped move the needle. Um, and and you know, that's happening uh in Congress. You know, North Carolina representative again, uh uh Congressman Greg Murphy, um who is pushing so hard uh to hold these large insurance companies accountable. Uh, interestingly enough, he was a fellow brain surgery patient who was denied his care. You know, they don't look and see he's a congressman. They, you know, they just see the patient. So they denied his care. And just weeks after his brain surgery, he said in the Ways and Means committee that he was gonna make sure he was there and he dressed down those CEOs in that committee, and he hasn't stopped another great video to watch.

SPEAKER_03 19:15

Yes, and he's another great video to watch. So uh you you've been with the who's who you're in politics now. You know, the the the question I have for you before we dive into these insurance companies is sure what have you learned about these companies in all this time fighting?

SPEAKER_04 19:39

They're unscrupulous, they're corrupt. I mean, that's just that's the the truth. They they're corrupt. They will do anything to preserve their profit. They answer, you know, the big ones answer uh the publicly held answer to their their you know stakeholders. The the nonprofit onesholders, yeah. Yeah, the shareholders, and the nonprofit ones answer to the executive uh padded salaries and other, you know, they are going to delay and deny care first. We are now seeing medicine doctors have to practice medicine by permission now.

SPEAKER_03 20:30

Yes. And that is a without without the legal risk on the insurance companies for anything that happens.

SPEAKER_04 20:38

And they are practicing medicine without a license. So, in my opinion, they should be held accountable for bad outcomes. They deal with insurance codes and and ICD codes, diagnosis, and treatment codes. They deal with all of this, they they deal with patient care, and they should be held accountable for a bad outcome. They should have been held accountable for my decline in neurological health. Um, they sh I mean, there's so much around what they're doing um to to patients and without thinking about the patient cost. Um, when I when I spoke with my insurer this week, I talked about the patient costs. So you've got to understand that this goes beyond just a treatment. I can't, my daughter uh is in her last semester of college in western North Carolina and Boone, North Carolina, is cold in the winter. While the cold and the wind causes trigeminal neuralgia to send it'll send me to my knees. And so therefore I I'm not able to go visit her with I mean without a problem. I I can't talk on the phone a lot with my other two that are uh in. Texas, far away from me. Um, I can't, and this is where I got really choked up with the insurer and couldn't hold it back. I can't take care of my elderly parents the way I want to. They cannot count on me the way I want to be counted on, you know? So there's a human cost. And I go, the the human cost that really gutted me most recently, and I I know you know this story, was Peyton Harris. And Peyton has blown up with her story as a heart transplant uh patient who is being denied her literal life-saving life, yeah. You know, being denied her life. Yeah, her life, her anti-rejection medication that she, you know, has to have to live. And I've had conversations with Peyton. We'll text and and I introduce you to Peyton. And and what got me is she had this heart transplant and could not get this medication. And the transplant, the mother of the young man that died offered to pay for her medication because she said it felt like she was losing her son all over again.

SPEAKER_02 23:19

Yeah.

SPEAKER_04 23:20

If that doesn't wake up an insurance company, nothing will, and it didn't wake them up.

SPEAKER_03 23:28

Yeah. Do you think that they um that the system is broken? Or do you think it's working exactly the way it was built to?

SPEAKER_04 23:38

That's exactly the point. It's not a broken healthcare system. We talk about it being broken, but it is by design. It was by design. And you know, they evolve. They insurance companies evolve in a very sneaky way, a lot, very fast, lazy way. You know, now they're talking about oh, prior authorization is better. You know, AHIP reported there was like an 11% decrease, and that 11%, the 11% was like 6.5 million people. That's just 11%. Yeah, they've reduced it by that. Um, I was in a one of the most recent KFF news articles was talking about the pledge, the performative pledge that these CEOs had last summer about, oh, we're going to do better. They can talk all they want about changing uh prior authorization. And there was just an article this week talking about it might it was united. That's what I thought.

SPEAKER_03 24:41

1700, 1700 uh I think codes no longer require prior authorization. Did they ever require prior authorization?

SPEAKER_04 24:50

Well, that that's a point. But my point in that KFF news article, and that I'll that I'm saying all along is they might be reducing prior authorization, but you know what they're not gonna do? They're not gonna keep paying retroactive denials.

SPEAKER_03 25:08

And tell us more, tell our listeners more about the retroactive denial, especially the one that you're in right now, because I think that explains it perfectly.

SPEAKER_04 25:17

Yeah, I've been in retroactive denials before with IVIG, so I understood it. It is that clawback in payment. They can say, Oh, you we approved your prior authorization, but then they take it away. Peyton actually called it something, she calls it the ghost approval.

SPEAKER_00 25:37

Ghost approval? Yeah, or ghost denial.

SPEAKER_04 25:40

Yeah, and and you know, the retroactive denial is when all of a sudden, and my husband actually sent me an article this morning where it was talking about North Carolina. Um, you can see insurers coming back years after an actual payment clawing back that payment. Wow. Um, the retroactive denial comes when care has already been received. Like I got these trigeminal nerve blocks with my physician.

SPEAKER_03 26:14

After it was already approved. Well that you could get it.

SPEAKER_04 26:19

But that here's the other snaky part. They called to get the prior authorization, and they were told no prior authorization was needed by Mia. I they have who the person was. And then my insurance company said, your doctor didn't call for a prior authorization. Yes, we've got proof that they did, but they said no authorization was needed. Um, so we went forward with it because I had tried to change the policy and worked with them, and we thought, great, I've had success in getting the policy changed. So next thing you know, I have to check my insurance portal almost daily because they will they will change things. And I see who's got time for that. Nobody, nobody, but I have to go and look because I again my IVIG is under review again. And I asked why, and they said, check back again. Well, I know why. It was over a $50,000 bill, but that was approved by an external independent reviewer who overthrew the denial and said, You've got to pay for it. That's not happening with these trigeminal blocks. I'm having to argue, and that payment is out there with my provider, and it's being denied. So retroactive denials really harm the patient because you you've been told that you were getting this approved, or you were able to get some type of treatment, and then you get a bill for it. And you're like, wait a minute, I shouldn't get a bill. And then you have to fight the denial, you have to fight backwards. And that's what I'm in right now is fighting backwards. And my insurance company is making damn sure that it's only this June 19th retroactive denial that I was arguing on this this um panel review. And they said it so many times, it's only this one because I need it in the future, and they know it. And I've argued that and said this. And what good does it mean to argue backwards? Yeah, and that's just it. Why why am I arguing about backwards? We need to talk about the future. The medical necessity doesn't change with a word. And that's yeah, you know, that's where they're very sleazy, very snake in the grass. And they'll I love it when I get the emails from from Blue Cross, North Carolina that says, Oh, we care about our patients, we care about this, we want to help you, we want to, we want to help lower costs, we want to make health insurance more affordable for North Carolinians, and all insurers do this. Yes, that's marketing, that's PR, which by the way, yeah, when I call them out, who's the first department that gets in touch with me?

SPEAKER_02 29:30

PR.

SPEAKER_04 29:31

PR, not appeals. Yes, uh, Ms. Nix, we're noticing that there's an article out there that you know you're saying I'm like, yes, and tell me what part of it is not true. And that's the one thing they know about me. If I make a statement, I can back it up in writing. Because in the insurance world, if it's not documented, it didn't happen.

SPEAKER_03 29:58

Yep. And you are you always have your documentation. You not only have that you have multiple forms of documentation, you own, you own your record.

SPEAKER_01 30:08

Yes.

SPEAKER_03 30:09

Let's be clear, right? I think that's one of the biggest things that I learned, and I know that you've learned it. You as the patient have to own your medical record. You can't put that on anybody else but you, and you can't be dependent upon your EHR login to save you.

SPEAKER_04 30:28

Right, right. I mean, I've got a three-ring binder that I keep copies of my scans, that I keep, you know, blood work. I mean, everything's in like my chart or or something, you know, like that that you can you can get to now. But when I was going to Johns Hopkins, my chart was really just getting started very good.

SPEAKER_02 30:51

Yeah.

SPEAKER_04 30:51

And my local um physicians, we didn't have my chart. So I went into Johns Hopkins with this binder and the neuroinfectious disease guy was looking through it, going, oh my gosh. You know, this is incredible because they can do their their studies and compare it to that. So you do have to own everything that that you go through, especially when you're a high cost patient, which I am, and you know, a complex patient. You've got to, it goes back to the education of your disease, what's happening. You need to understand what the blood work means and you need to understand these things. And, you know, we were we we gave a webinar together uh a couple weeks ago, and we had a patient say, Who has time for this? And that's just it. We you don't have time for it unless you're like me and disabled. But then again, you don't have time for it. No, and that's what went viral with me recently is I build, I invoiced my insurance company the time that I put into the denial very tongue-in-cheek, and even put a disclaimer that this was, you know, an exercise proving what happens behind the scenes with patients. And boy, I'd love to look at I need to compute the cost of that now.

SPEAKER_03 32:26

The inter but I would love to have seen the internal conversations at the insurance company about that.

SPEAKER_04 32:34

Yes, and it was it uh it struck a nerve with physicians, with other patients, with um Because they don't get paid for it either. No, no, and but that goes back to something uh the internal conversations with the insurance company and the fact that you own your file. And this is something that I preach so much these days, but it's also something that the insurance companies will fight you on tooth and nail is your claim file. Every piece of information that that insurance company has is yours.

SPEAKER_03 33:22

Great point for them. Every piece of information that the insurance company has with you involved, or about you, the patient, own.

SPEAKER_04 33:38

Yes, and they will tell you that that's not the case. Um, there's a great source. Uh, I have all of these sources in my um Substack that I share with people so they can go back to them. I didn't know about the claim file until 2023 when I learned about it doing my research, and there was a ProPublica article talking about patients have rights to their claim file and the information that you can extract from that claim file. And I started reading about it, and there was a patient by the name of Christopher McNaughton that um eventually got his claim file, and in that claim file, he he was battling one of the most severe cases of ulcerative colitis. And in that claim file that he got, there were recordings of the doctor saying, Oh, I spend less than a minute on it and just stamp it denied. He was there were internal conversations between a reviewing physician and one of the nurses, they were laughing about him. Um, they were talking about all the things that they were doing to deny his care, and all of that was made public. And it set, I mean, it stunned me. And it made me think, okay, with everything that I have done, with all the things, when I went to the Blue Cross Blue Shield of Illinois, which is part of the Healthcare Service Corporation, when I went to their CEOs and I was asking, okay, why are you denying my care? Why is this happening? And I wanted to see my claim file. I wanted to know how much of what they're denying and how much of what they're doing as a retaliation based on my outspoken patient advocacy. And that has been a question many, many people. Um, even one of my physicians has asked, do you think that they are retaliating?

SPEAKER_02 35:39

Even me.

SPEAKER_04 35:39

You've asked me that a lot. And you know, I think they are. I mean, I I'd like to say, no, I don't, I'm just one patient. But when you tick them off as much as you did, and when you take a quote from a CEO of Healthcare Service Corporation talking about how vital patient care is and being able to throw it back in in their face and saying, okay, well, if that's the case in your $22.1 million dollar salary, and broadcasting it and sharing his picture with his quotes and stuff. And we know at that, right after that, right after all of that, all the pictures came down because of one man, Luigi Mangioni.

SPEAKER_00 36:30

Yeah.

SPEAKER_04 36:31

And violence is never, ever, ever the answer to anything, and what he did was horrid.

SPEAKER_01 36:40

Horrible.

SPEAKER_04 36:41

He blew open the discussion of denials, and people understood his desperation because he was a pain patient. His mother was a pain patient, and they were being denied care. Yeah, you've been there, I've been there, and you can understand that desperation while I'm arguing with my insurance company about the suicide pain that I deal with. I you think about somebody like that uh and the desperation that he was in to do what he did, but what happened with that conversation. And I still get chills when I look at the reversal of my IVIG. Because my IVIG was reversed, the denial was reversed that week that Brian Thompson, the CEO of United Healthcare, was brutally the day he was murdered. I got a call saying we feel like your case, because I'd asked for an expedited, external, independent review. That independent's important because you can have an external reviewer within the insurance company that's not independent. They're being paid.

SPEAKER_02 38:04

Sure.

SPEAKER_04 38:05

Um they said, we think you qualify for the expedited review. You should know within 72 hours. That was on a Wednesday. I was in the MRI having my every six to month to 12 month uh brain MRI. And when I came out of that MRI on Friday, the independent reviewer had left a message saying, we are overturning this denial. Um, and he said the medical necessity is there. And the letter that came afterwards with Blue Cross, North Carolina was very much medical necessity, medical necessity, medical necessity. They kept saying that because, and that was that whole thou dost protest too much. Was it because? And I wonder, I I know that it was absolutely medical medically necessary. I know that that was the case, but I wonder how many other denials were overturned that week, too.

SPEAKER_03 39:13

So it I I would agree. And how you know it as you've seen in Congress lately when they brought in uh each of the leads, and I think it was uh Alexandra Ocasio-Cortez who showed the single system model that CVS The integrated, yes, integrated that they claim works best for patients. And she rightly called them out. Yes, no, this works best for you because you get to keep all of the money, you get to decide what you pay each of the components that you all own, including the provider.

SPEAKER_04 39:55

Yeah, let's talk about that integrated uh whole vertically integrated system that that has happened and you know the breakup big medicine bill that's there. Um, and you know, these are the things that people like Mark Cuban, uh, who is really working to change certain aspects of healthcare and how we get medications, but he's talking about this. This has to happen. And it's true. And it's not a this here's the thing that people need to understand healthcare should not be politicized. Healthcare doesn't care who you vote for, how you're registered, what your socioeconomic you know, status is, because disease is not discriminatory. And therefore, this needs to be it's a purple discussion. It does not need to be Republican, Democrat. It needs to be everyone. And he said to other senators, why are you not jumping on this bill? But this integrated, vertically integrated healthcare system, it takes one patient through the entire cycle of their health care with one company. You go to the physician.

SPEAKER_01 41:10

One controller.

SPEAKER_04 41:11

Yes, one controller. You go to the physician who is now owned by health care health insurance health care companies. The physician is owned by them. They write you a prescription that is negotiated by the pharmacy benefits managers of that same company. You go into the pharmacy to pick up that prescription, and a lot of times they force you into a specialty pharmacy that's theirs. And so you're filling your prescription under that, and they're the insurer all along.

SPEAKER_03 41:50

So they they get to dictate what medication you get, what you pay for that medication with your your copay, coinsurance, deductible, what counts towards your out-of-pocket maximum and your deductible and what doesn't, how often and when you get to go back to see that doctor, how long of a medication prescription that will last, right? All of those components. And as we've had a discussion with someone in the health insurance space, they know that 5% of their patients spend about 50% of the dollars.

SPEAKER_04 42:25

Yes, and I'm one of those 5%.

SPEAKER_03 42:28

And the entire game is to get those 5% below the 50% because there's their profit. Right. Right. So the the patients who need the most have to get the hardest fight.

SPEAKER_04 42:44

Right. And that's why I and here's that's where I am today fighting hard for what I need. I've always fought hard for what I need. But this particular injection is low cost to them. It's low cost to the self-funded employer that pays the, you know, the bill. And that we need to put a pen in that one too, about understanding your insurance to get back to that. But I'm fighting so hard for it, and it is low cost. And I told them in this call that I fully believe, I personally believe it is medical cruelty to deny a patient something that's non-invasive, low cost, and is out there and is a resource to eliminate immense pain and suffering. It's medical cruelty. And yeah, the but what this video that I posted and what I've been talking about, and I asked them, I asked them specific questions. And I was told by the analyst, oh no, he will not be answering that question because I asked the reviewing physician how many people with multiple sclerosis. Related trigeminal neuralgia have you treated with nerve blocks? Boy, you talk about jumping in really quickly. But I asked these questions of them and I wanted to understand why they're denying a inexpensive treatment option. And I asked, and I had silence on many of my questions, or I was told my questions were not appropriate. I asked, Do you understand that by denying me these injections, you are pushing me down the road to my sixth brain surgery that I won't pay for your choice that they will pay for? Would you rather pay for low-cost injections that might keep me out of a surgery for the rest of my life? Because and I said multiple sclerosis patients deal with a with trigeminal in a much different way. And it makes this much more complicated because the surgeries that I've already had for it, the last two, were to fix that. But the failure rate is already pretty high for a normal person. For someone who deals with demyelinating nerves, it makes it even more challenging. So why would you want to put me through another brain surgery? And I sat there, I let that silence just linger. And it did for a while until they, you know, tried to move it along because I I was waiting on an answer. Do you understand that's what you're doing? So it's it's it's interesting. People need to understand that they can push back. They have the power to ask your questions, may not get answered. And you know, I asked what part of this, what part of my uh physician's clinical documentation did you agree with or disagree with? That's an inappropriate question, I was told. Um, I also asked what part of my diagnosis, what part of this whole issue at hand today do you disagree with? My diagnosis, the the treatment and the indication, or the the clinical judgment of my neurologist of 15 years?

SPEAKER_03 46:21

Yeah.

SPEAKER_04 46:22

So you disagree with no response, dead silence, and then I being told, no, your questions are not appropriate. Why are they not appropriate?

SPEAKER_03 46:35

How are they not appropriate?

SPEAKER_04 46:36

I know I know. Well, it's because they were right. No, and I I I feel like they won't answer my questions because they know this has never been it it it forces them to say it's never been about medical necessity. And I proved in this conversation and with all my documentation that it is not experimental and investigational either. So I mean it it we should not have to fight this hard for care.

SPEAKER_02 47:10

No, period.

SPEAKER_03 47:12

No. Yes.

SPEAKER_04 47:13

And medicine and healthcare's become nothing but a negotiation now. Healthcare is a negotiation. That's all it is anymore.

SPEAKER_03 47:23

You have you have the you have a health plan, you're paying your premiums for the right to pay an exorbitant deductible. That's all that it gives you. Yeah. Right? It's a glorified coupon book when in fact not having insurance for many is cheaper. Yes. Now, that is not the answer for most patients like yourself and myself that have chronic conditions. We need to fix the system itself. And if in that process it breaks, it breaks. Yes.

SPEAKER_04 48:00

Well, it that's here's the thing. It's not just about fixing the system, it's about holding them accountable. Accountable. It's about having regulation.

SPEAKER_01 48:12

That is how you fix it, right?

SPEAKER_04 48:13

Regulation. And in in one of my um articles that I wrote, I talked about what if we actually held them accountable? What if alongside the salaries that are published, we publish the denial rates and the outcomes? What if these CEOs and other you know, C-suite are paid on the basis of how the patient is treated, how the outcome, you know, you know, we have metrics. The business world has metrics, of course. Why are we not holding them accountable and have the regulation?

SPEAKER_03 48:55

We're still stuck on the quality metrics, which have nothing to do with patient outcomes. They have everything to do with a secondary, tertiary economy of paying one system to keep track of numbers that nobody really cares about.

SPEAKER_01 49:13

Exactly.

SPEAKER_03 49:14

Um and and I would trace the failure maybe not the failure, but the if you really look at it, if we go back to the 90s and everyone began to realize that these insurance companies are really throwing down the gauntlet, I believe that is when we saw that comment um from the gentleman we were speaking with who said that the insurance companies began to say that the the providers don't fear them enough. So they got really he they got really heavy-handed. So then the doctors said, All right, we need to come together. And you know what? Maybe we'll join our hospital to get some more power. Then comes in electronic medical records and the quality push, and everything got really expensive to implement and to track. And as as providers, when you haven't had a raise in nearly 30 years, how are you supposed to keep that uh ship afloat? Right. So the providers and the providers are we're losing physicians, not to mention, as you know, losing physicians to suicide.

SPEAKER_04 50:23

Yes, burnouts. And I I work in the the as a volunteer for um the national um suicide prevention. Um it is so important to understand that physicians are getting burned out because they're not able to do their job. They're walking away from practice. I had a physician that I adored said to me, and I happened to see him on his very last day of practice, and he said to me he had seen my NBC piece. And he said, Yes, I was sitting there at the breakfast table this morning, and there you were. And he said, Part of the reason I'm leaving and retiring early is insurance. But you know patients and physicians have to have the medicine back between them and let the physicians practice without permission. They, you know, I had a pain specialist who has since moved on now, who I would see him and he would go, Okay, hold on, I'm gonna go out here and see what insurance will allow me to do for you today. And then he'd come back in and guess what he was doing. Those injections. The other insurance company, the other blue cross paid for it. I was getting those injections before. And he would say, Yeah, they they gave me permission today to give you these injections today. So right here, right then, he gave them to me. So here I am fighting them. And you know, another patient that I that I met just recently is a trigeminal neuralgia patient. And he goes to Duke. He gets these injections monthly as their standard of care. So if Duke is doing this as a standard of care, it's not experimental and investigational, and his insurance company pays for it. So it's we the whole system needs an overhaul. And we're seeing, you know, bills and acts, Patient Protection Act here, or there's one that I saw yesterday that that came out. All of these different acts are coming out, and bills are coming out, but there's nobody corralling and having one solid, good patient act. Or or one, I mean, this bake breakup big medicine bill is important.

SPEAKER_03 53:04

Um, but it's very provider focused.

SPEAKER_04 53:07

And it and it should be for what it is, but we, you know, there's a lot of things that are happening that need to get organized and need to get built to where we can see the change happen. And that's where I say to lawmakers, let's get off of you know, TV and news and newsbytes and things like that, and let's do the work. Let's actually do the work and make it uh, but you know, you've got the lobby because we see now the the lobbies are really we're not that bad. I mean, it and that's just it.

SPEAKER_03 53:45

What's funny to watch is the lobby for the PBMs versus the lobby for the insurance companies when we know they're the same people, same people, and and they sometimes point the finger at each other and decide who's gonna take the heat for the month, and now they're pointing the finger at the wholesalers who buy the products, right? Um at the same time. And then they're gonna point fingers at the hospitals, and yes, there's many problems with hospitals. We won't get into that. Let's keep this on the insurance companies. But still, it's a it's a big shell game. It is a shell game. Billions of dollars being spent in Congress. What we hear when we what we hear when we go to Congress, and or may that be state or or federal, is well, you are a patient that is getting money from XYZ company, you can't be trusted. Oh, interesting. This is this works one way, yeah.

SPEAKER_04 54:44

Yeah, exactly. Well, and this also goes into understanding your insurance. Yeah, patients have to understand, and there's so many people. I I have patients all the time that come to me and say, Can you help me fight this? Well, what type of insurance do you have? Well, I have Aetna, yes, that's your company. How do you get your insurance? Or is it through your employer, self-funded? Are you are do you go through the marketplace to purchase your own? Are you a federal or state employee?

SPEAKER_03 55:18

And uh so people don't why is that important? I know why it is, but I want you to tell our guests.

SPEAKER_04 55:24

It's important because who regulates and who oversees these insurance companies when you have a grievance is very different. Uh, the Department of Labor and ERISA at the ERISA Act um oversees the self-funded employers' insurance. I had to file a complaint with the Department of Labor. I also did it with the State Department of Insurance just as an added measure because you can still file a grievance with them, but they can't make the insurance companies do anything. I had a very different Department of Labor experience with my IVIG fight than I have with this. Um, it was very, very positive with the IVIG fight. They worked for me and they got on the phone and said, You were violating her ERISA rights. That's when the attorneys came my way. I had attorneys coming my way then. Now the Department of Labor person, I don't know if they're burned out with all the grievances. I don't know if it's because they've been cut. I don't know. Now I get a phone call with somebody just kind of chewing gum that says, Hey, we got your um your you know, your your grievance online. If you still need help, just give us a call. Well, sure, I need it still need help. It was two days later. I gave them a call that was a month ago. Still haven't heard. So sometimes it helps, sometimes it doesn't. But then, you know, I I helped a friend fight something, uh, and it was a retroactive clawback that she wasn't expecting recently. Um, but she was a retired state employer, or state employee, excuse me. So her insurance went through the state treasurer's office and the state, the state-run health insurance plan. So we filed, we I went straight to the treasurer, the state treasurer with her. And when we called the insurance plan, they got on and they were talking with her and they went, Oh, you went to the big guys for this complaint.

SPEAKER_02 57:32

Yeah.

SPEAKER_04 57:32

So it's being worked on, I'm sure. But we still go through these insurance companies to say, we need you to not take the account. We need you to call the provider and say this is in dispute. So this bill doesn't get sent to collections. I mean, there's just so much that has to go with it. And, you know, long story short, she did not have to pay the bill. We got it worked out. And it goes, it actually boiled down to records being kept. How were the records kept? And so the records and and this is very, very important. Providers have to keep very detailed records now, too, as well as the patient, because you're inevitably going to have a patient call you and say, I need this. And when I spoke to the provider on her behalf, I made the comment and said, Your records are going to make or break her case. So we need what you have. And so these are all the things that people need to know. But we know knowing where to go.

SPEAKER_03 58:41

Knowing where to go, how to go, right? You know, all comes back to, as you said, understanding how you get your insurance. Right. Who's the who is who is paying? You know, people always talk about, you know, who's the first payer in healthcare. Right. You'll often hear people say, it's the this insurance company or that insurance company. No, it's the patient.

SPEAKER_04 59:04

Right. Right. Exactly. Exactly.

SPEAKER_03 59:07

It's the patient. They pay the premium, they pay, um, they pay the deductible. Shit, you walk into that doctor's appointment, what's the first thing they say? Give me your card for your co insurance.

SPEAKER_04 59:18

Exactly. Right. And, you know, another thing that's very important too, that Mark Cuban, we talk about Mark Cuban a lot because he is doing a lot of the work. But that he talks about is every CEO needs to be looking at where their dollars are going. They need to be looking at the contracts, their, you know, the drug contracts, their contracts for insurance. Employers have no idea these days where the money's going, how it's going, how they can save, because nobody's looking at it. Every CEO needs to look and see what is happening with their self-funded plan and not just write a check. They really truly do.

SPEAKER_03 1:00:05

And engage their their employees to understand what problems they're facing. Because let's face it, so many patients are afraid to bring up anything about their health because they're afraid of, though they are protected, they're still afraid of the fact that they may it may be held against them.

SPEAKER_04 1:00:24

Well, I was. And I was very afraid. And with the first much larger worldwide company that my spouse got insurance through, they threw their lawyers at me and they came back very aggressively telling me, oh, I only thought I was entitled to my claim file. This was the employer. Now I've got a much different experience now. I've got the employer trying to help me and trying to, you know, because I've had to engage them. But I also consulted with, you know, a friend of mine that is an ERISA litigation attorney, one of the top ones in the United States. And I said, Hey, I'm I'm so gun shy over what happened the first time. You know, I don't want any type of repercussion to come back on my husband. And you are protected by ERISA. You are protected by federal law to go and speak with the employer and say, Hey, I need help with this self-funded plan. This is happening to me because they don't know that you're being denied care.

SPEAKER_02 1:01:34

Yeah.

SPEAKER_04 1:01:35

Because sure, the the they have no idea the hoops their employees and patients are having to jump through to get the care. Because the minute we brought it up to HR and talked to them, we were told this should not be happening. You should not be having to fight this hard for this care.

SPEAKER_02 1:01:58

Wow.

SPEAKER_04 1:01:59

And so, you know, you have to understand how you engage people and how you work to get your health care that you so desperately need. And that's why back to your entire original question, why I do what I do is I can. I can help people. I've I've never asked myself, I've wondered, you know, gosh, why did I have to go through all this? It's not a why me thing. My body betrayed me. That's what happened. But I asked myself, why not me? I have the understanding and the ability to help people. And and when I look back at 111111 and I wonder what that road was going, you know, to take me down. I had no idea that it would be to help my fellow patients and help people understand how to fight.

SPEAKER_03 1:03:02

Yeah. And you took it on head first with no qualms about it. You are this is not to blow smoke, Sally. You are one of the most empowering individuals I have ever come across for others. But you're and you're fighting for yourself through this, but I've never ever heard you tell a patient you're busy. No, and and you're always just like this.

SPEAKER_04 1:03:34

This conversation, this is what you don't understand about people. Don't understand about this. I can put on makeup, I can take medicine, but after this conversation, I will be down with ice packs. I will be, you know, and I have taken calls off camera with you, or I've had to say, I can't do it today. I can't do it today. And I told in that conversation, and Jon Snow is holding you down. Jon Snow, God bless this dog. He he's overworked, but he is not underpaid. He is not underpaid.

SPEAKER_03 1:04:08

But I mean ladies and gentlemen, I'd have to give a shout out to Jon Snow because he is the most kind, large service dog I have ever been around. And and Sally, I know you do work with that community as well. And you know, you're always giving of yourself and your time, not just because of of you know what you've gotten out of it, but the value that you see that it provides for others. And honestly, the world is a better place because of Sally Neely Nicks.

SPEAKER_04 1:04:40

Oh gosh.

SPEAKER_03 1:04:40

And I just wanted to say thank you for your work.

SPEAKER_04 1:04:44

You have helped me, you have read my dissertations, you have you have been a sounding board for me as a as another patient advocate because you've also lived it. And I I can't do this without people like you and your support. And the support of I have a village that is amazing, and that village holds me up every single day.

unknown 1:05:08

Sure.

SPEAKER_04 1:05:09

Jon Snow is part of that village.

SPEAKER_03 1:05:12

That's right. Jon Snow is part of that village, and Sally, we can talk for hours. Yes, we can. And you will be a repeat guest on this show. Um, but ladies and gentlemen, you just got a taste, a small taste, of the superpower that is Sally Neely Nick's. There's a wonderful uh meme going around of her as superwoman because she is.

SPEAKER_04 1:05:39

I think you did that. I think you actually did that.

SPEAKER_03 1:05:43

Maybe, maybe, maybe, but it's true. And if you ever are in a spot where you're saying to yourself, man, I don't even know where to start, I don't know how to fight this, check out Sally's um Substack first and foremost. We'll make sure that that is linked in the show notes too, so that there's quick access to it. Uh, but Sally, it's been an absolute privilege.

SPEAKER_04 1:06:08

Thank you so much. You know I adore you and I appreciate all the work that you do.

SPEAKER_03 1:06:15

We're just getting started, right? Yep. Be well. Thank you, Sally. Have a great one.

SPEAKER_04 1:06:21

You too.