Virginia’s Voice: A Rare Disease, Real Stakes

SPEAKER_01 0:00

Welcome to Patients Voices in Pharmacy, where patient stories become powerful change. I'm your host, Loretta Bosing. Before we begin, a quick reminder: the experiences shared in this podcast are personal stories. It's not intended as medical advice. Always consult with your healthcare provider or other qualified professionals about your personal situation. Virginia, a rare disease was only the beginning. What started as a deeply personal battle for survival became a relentless fight against a healthcare system that too often puts profits ahead of patients. Now her story is helping lawmakers see the devastating consequences of PDM practices. My life-saving access to life-7 medications can never be left to corporate interest. In this episode, Virginia shares the journey that transformed her from patient to and caregiver to powerful advocate. So, Virginia, can you introduce yourself and tell us a little bit about your family and background?

SPEAKER_00 0:53

Yes, Loretta. My name is Virginia Maxwell, and I live in South Carolina. I've lived in South Carolina since I was four. I was born in Atlanta, Georgia, to my parents, Gary and Gil Davidson. And I had an older brother, and he has no medical conditions whatsoever. And around the time I was seven weeks old, my mom noticed that there was something different with me. And it started out with my skin. It took about four years to get me diagnosed. I was diagnosed in Vanderbilt, Tennessee, with uh what they consider an ultra-rare skin disorder called Pediorias rupropilaris. And not only does it affect my skin, it affects my joints. We believe now as I age it's starting to affect some of the organs as well. Basically, everything works in overdrive. They told my mom then that I would never meet anybody with the same disorder. For years of my life, we went from one dermatologist, it also affects my joints, to one rheumatologist to other specialist. When I was a kid, I honest to God thought I was famous. The doctors and the students at the medical schools were really sweet. They would come in and get me autographed their um prescription pad. I think when I was 12, I was in middle school and I had a bad reaction to penicillin and it flared me up. I'm sure that you have one of the photos you're gonna share with your viewers later. Um, and that was actually the photo that you'll see is actually a good photo. Mine, all my hair fell out. I looked like I'd been burning a fire. I was actually put in the burn unit and I was there for 88 days. And that's when I realized that from feeling like I was Taylor Swift to a freak show kind of thing. So, with all that said, through all that time, I allowed my mom to do any kind of advocacy stuff. She met somebody on AOL, that's how long ago it was, and got involved with the support group there. And there was just literally less than 10 people. We have grown that support group to about 400 people online, mainly a Facebook support page, and that's worldwide. That's not the state, that's not the United States, that's worldwide. Years later, I decided that to get married and I was not gonna have children, and I got talked into it, and we went and did genetic counseling, and they said I could not pass this disorder on. And I'm an overachiever, and I have since passed my disorder on to all three of my children. So I I have a set of twins that are 21 and a daughter that is 13.

SPEAKER_01 3:01

That has to be a lot because what it's like and you just what you what they may have to go through.

SPEAKER_00 3:06

Well, and I will tell you as I tell all the other people, and we'll get into it later, is I really do truly believe it's harder as a parent than a patient. I don't know any other way of life, but I do know what the pain and the difficulties and and all that feels like. And so when I knew that my kids were gonna have to suffer like that, it just tore me to pieces. Um but by the time the boys, by the time the twins started getting sicker, there were different treatments. There weren't biological treatments that we rely on now to stay alive and be able to function as normal people and to look normal because we definitely don't look normal without medication. Somewhere along the way, something happened.

SPEAKER_01 3:41

You started having issues, getting your medication. Right. Can you go into that moment and to now?

SPEAKER_00 3:49

Maybe I should back up just a little bit. So I was clear, looking like this, the kids were okay. And I got asked to speak in DC at a summit for the Coalition of Rare Skin Disease or Coalition of Skin Disorders. We were partnered up with American Academy of Dermatology. That was probably 2016, 2017. I really had not had that hard of an issue getting medication. We took stuff that were oral medications, topicals, and all that, but it was really when we started to get into the biological drugs. They're such a huge life changer. I went from looking like I'd been burnt a fire to this within 30 days. Obviously, my hair had to grow back and all that. I have pictures of one of my sons before and after 30 days. Other than the prior authorizations back around then, the 2013, 12, I really had not had that any many problems. Well, then the twins started getting sicker. Nathan specifically was really bad off. We were trying to get him on the biological drugs. And that's when I started facing the things about with, well, it was a rare disorder. Luckily, we've been diagnosed with rheumatoid arthritis, which is a debilitating disorder. You can, it's actually the leading cause for disability is arthritis. We were able to get medication for him for that, but then I also had to jump the hurdle that that medication wasn't approved for children under the age of 18. After we worked for about a year with him and we got him approved, and then his brother started getting sicker. And it took me two years to get him approved, even though I had been on the medication. I actually should correct myself, I'd been on the medication since 2008. So I mean, I had been stable for quite some time. And I've I don't know if I've shared this with you before, but that is really the reason why I started advocating was because I had to make a decision at one time. I had this medication that was the same exact milligrams. It was also prescribed for me and my son, but the insurance company was saying that he couldn't have it. Not the doctor, not the medically trained professionals that had gone to school forever, that are on this earth to treat our medical conditions. It was the insurance company. And so luckily there was a drug rep that had seen my before and after photos, and he gave us some sample shots. I think that word gets used loosely when we say samples in our world because people out there watching this that have never been sick think a sample is little, little bitty tiny. But we're talking about a $30,000 sample shot. You cannot expect someone to be able to give you that in this way.

SPEAKER_01 6:07

So that's a lot of money.

SPEAKER_00 6:09

So every time it was time for shots, and I got one through the insurance, and then I got Nathan's and then Joey's. What I was getting through the drug rep, I still had to live in fear for every eight weeks. Was I mean, I even asked the doctor one time, I said, what do we do if the drug rep is in a car accident? Like, how do I keep how do I keep them alive? So what I was my advocacy work really has been driven because I feel like I've been almost forced to play God with my children and my own health because it's the same medication. It's like, who's sicker? If we don't have three shots and now Lauren is on it, so we're all four on it. But that's a whole nother recently happened because after 18 years of being on that medication, uh, the insurance company has taken it off their formulary. The PBMs are removing it from their formulary, and we no longer have are able to get it as of July 1st. That's after after January 1st, we got award letters saying that it would cover till January 2027. In May, I got letters saying that we could not get the medication after July 1st. My daughter, who was 13, they printed her name with her birth date and said you should try X drug, X drug, X drug. And we went for it and they denied her for all of them because they said of her she was under the age of 18. Wow.

SPEAKER_01 7:19

That's terrible. So what age? Go ahead. I was gonna ask, what age were your kids whenever they were diagnosed?

SPEAKER_00 7:27

Well, with Nathan, I knew by four weeks old I could tell that he was, and and my family kept going, oh no, no. And I really was convinced that Joey was not gonna be affected. So Joey was about a month. The doctors, when you have such a rare disorder, the doctors kind of just look at you and they'll say, they'll say, now, we don't know what to tell you, but we can tell you what if this medication would do to you or what the side effects are, would you like to try it? So that's kind of where they just kind of went with the diagnosis when I went in and said, Okay, my kids have what I have. But like I said, it's not so severe when they're little, it just progressively gets worse. The the lady that my mother met on AOL many years ago, she was, I was so close to her and she was in Virginia, and she passed away from our disorder. She flared up and they couldn't get it under control, and she got, I believe it was a secondary infection. And I and her her son, this disorder is so impactful. Her son actually dedicated his entire life. He is a rare disease researcher in Virginia, and him and I, I love him to death. We run the foundation together, the PRP foundation, with another lady named Tara. And so I just I'm so thankful for those relationships and the relationships that I've made, like meeting you and because it's very, it can be very lonely, you know. I agree.

SPEAKER_01 8:37

Yes, I totally agree. I try to get people, I live in a smaller community and trying to get people care enough to get involved, to show up, to just even support me with my children as we're going through this because it is taxing. It's hard when Wes is in a hospital and that lack of support, we need people around us to help us. Absolutely. So I'm so appreciative. Every time I get to see my advocacy friends, those are like I call those days just a little bit of heaven because that's how sweet it is. You all are just like rare jewels to me, just beautiful people. And I'm just so thankful that our our paths crossed. I appreciate you for so much for what you do.

SPEAKER_00 9:14

It's weird to have that warm, fuzzy feeling whenever I see you, Bill, Claudia. And I've I've been fortunate enough with the Copay accumulators here in the state of South Carolina. I was able to two years ago get involved with the Bleeding Disorder Foundation. They are such huge advocates. And it's like you said, it's hard to get people to talk to their legislators and try to educate them because you're some people are intimidated. They think, oh, this is a senator or this is a house of representative. They don't know unless their family's been sick, they do not know. We have some really good House of Representatives now in the state of South Carolina. I like to call them freshmen. They're kind of, I guess they're juniors now that have been re-elected. And unfortunately, one of the driving forces between um the PBM reform here in South Carolina, he got involved because his son, I believe it was seizures or his wife was calling him. I can't get the medication, I can't get the medication. And he went to the local pharmacy. I think he said he went to college with the guy that owned the pharmacy. And he's like, I need my kids' medication. He's like, You can't get it here. And that's when he learned about specialty drug medications.

SPEAKER_01 10:15

And yes, yes. So there are a few. I would like to take a moment because you've mentioned a few words. I just feel like we need to break down for the listeners that aren't as into the advocacy field yet, because I I truly believe that you're going to be an inspiration and inspire many other Virginians. So I I would like to back up a little bit. So you mentioned a PBM formulary. Yes. Can you explain what that is and how it prevents patients from getting the medications that their doctors prescribe?

SPEAKER_00 10:43

You might know better than me. Well, a PBM is a pharmacy benefit manager, and I believe they were brought in out in the 70s to kind of be like a middleman or a negotiator between the insurance and drug manufacturers. But they are actually, to all of our knowledge, we don't really know much about them. Anytime you are on the phone with one of the specialty pharmacies or whatever, and and you're supposedly talking to one of these people, they won't tell you whether you went to school, they won't tell you their credentials. I really truly believe that they changed the formulary. So, like if you're, we could use, say, Tylenol Multrin, right? And so you had to get your Tylenol Multrin with your insurance, and you really love Tylenol, and it was cheaper. And in our in my actual personal experience with our medication, and I've been you're stable on it and all that. Well, they can just decide at any given time that they want to not cover the Tylenol, and then we'll only cover the Multrin. And then you don't have a choice. You don't have a choice anymore in what drugs you take. Your doctor doesn't have a choice anymore in what drugs you take and how long you're able to be on them. I mean, it's all it's up to now. Really think that's where people are that are not chronically ill or haven't had a rare disorder or just been sick for a long period of time are confused. We really don't have control over our health anymore. And it's not just the patient, the physicians don't have control. My doctor told me last month, she said, I don't even know why I went to medical school at this point, because I'm telling them that this is a life-saving drug that you're on. I've given them all of your records, I've given them photo documentation, like it, and there's still there's not a law in place saying that if a patient is stable on their medication, that the PBM cannot change their formulary, and then basically you can't get that medication.

SPEAKER_01 12:26

And that's the problem. And and so the formulary might hearing you right, the way it sounds like you're describing it is just the list of medications that are covered by insurance that they call it the preferred, yeah, the preferred drug. So, for example, your doctor, you had mentioned people that have never had a condition that requires a lifelong medication. When their doctor writes the script and says, Okay, this is the one that's going to work best for you, they take it to the pharmacy and they're like, Okay, this is the medication my doctor wants for me. And all of a sudden it's like, oh no, we're not going to cover that one. That's because it's not in the formulary. And the way those formulas are built is often the PBM is supposed to negotiate with drug manufacturers in the best interest of the patient. But we have seen time and time again that these formularies are not always made in the best interest of the patient, but in who's going to give the higher rebate or kickback to the PBM. And this is where there's a lot of issues with misaligned incentives. I know you had a great example of this.

SPEAKER_00 13:29

Can you go through it right now? Yes, actually, the drug that I've been on, the injectable, it's a biological drug, and I've been on it since it was 2008 or 2009. And I've seen the increase of that medication. It used to be 6,000, then it's 33. And now they're saying they won't cover 33,000. But they did just finally, yes, two days ago, I got Joey's approved first, and it's $45,000. I have it in in letters from CDS CareMart saying they're not going to cover the cheaper drug anymore, but we can try these other more expensive drugs. And that was that's a decision that was made without anyone contacting my physician, without anyone contacting me, without looking at my charts or anything. To me, I just don't understand why we're not all really upset about it. Like even people, and Brew, this it is so bizarre. My one of my 21-year-olds, his girlfriend, stayed over for a while while they were out of college, and she has juvenile diabetes, and she was pretty upset one day. And I said, I don't I I don't understand what's going on. You got not you have your insulin. And she's like, Well, my mom has to fight with the insurance company about my insulin, and they keep changing which type of insulin she they will cover for her. So I'm gonna have to dig into that. I'm not gonna drag her to the state house with me.

SPEAKER_01 14:46

Yes, I mean it's these issues definitely, like you mentioned, doesn't just impact people with rare disease. Even those with the most common conditions, conditions are still having similar issues, and it would be great to see that. And if that happens, definitely post it out there online for everybody to see because I think to see that that working together and oh my goodness, to have No, there's there is days.

SPEAKER_00 15:07

I mean, my children know some, they can look at on look seeing it on my face. They're like, mom was on the phone with CBS Care Mart for three hours at least today. It's not, it's a it's I don't even call it a part-time job anymore. It's a full-time job. I mean, you just have to almost cave in and just it is your life. And I had a friend, I've been friends with her. My parents, our parents actually went to school together. So I was raised basically like a family member, and she had seen exactly how bad I could get and all that. And one day I was trying to talk to her and she said, Why don't you just go to publics and get it and I'll pay for it? This was before she had kids. And I said, I can't go to public, like we're and that's why it's so important for people to get involved in advocacy work. And it's so important for people like you and the other groups of us to be able to stand strong together. And that's why I'm so thankful. And I do want to mention I am so thankful for Sue Martin because I had done some advocacy work and I felt like I was safe and we were all on the medication and all that. And I the when the copay accumulator hit two years ago, I lost my marbles. And so I reached out to some people from DC and I was like, hey, who's in South Carolina working on this? Because I had I decided that I was gonna pretend I wasn't sick anymore. We were gonna take our injections and go on. The boys were wrestling. I barely attended middle school and they didn't miss any school. Nathan missed a little bit of fourth grade. So I felt like we were set. I was so happy. And then when the copay accumulator hit, and for the people that don't understand what that is, is those of us that are on the very expensive high-cost drugs, you have an out-of-pocket maximum and you have usually your insurance will cover 80% and then you have 20% left over. Well, when you're talking about $33,000 and $40,000, your copay, you're not gonna, no one's gonna afford it. So the drug manufacturers started offering assistance and it's real money. And for us as a family, my insurance has changed a little bit this last year, but for 20 years it had been the same. But last year, our out of pocket maximum was $18,000. And our um assistance was about 20. That was for the whole family. And so once we used up that $20,000, we had reached the out-of-pocket max. So we were okay. And that's how that's been for 10 years. All of a sudden I call and they're like, Well, you owe $6,000. And I was like, or whatever. And I was like, I no, it's a glitch. This is the issue, you know, and that's how I found about copay accumulators. And so they take that money from them and they don't apply it to our out of pocket maximum now. So this next year, my out of pocket maximum for the family now is just $7,000 because our premiums went up $300. And I instead of using those drug manufacturer cards, I've got the $7,000 saved. I'm gonna pay it in January. And unfortunately, not everybody can do that. But there's impact statements. You should look into your impact statements in the state, the state you're in, and you can see that revenue where they've double dipped. I I work closely with a lady in the bleeding disorder. They triple dipped on her son. They wow, yes. So her assistance was twice as much as her out-of-pocket max. They took all that, and then she had to turn around. And this was all this all happened to her in January. They got three times the amount. So I would like to say this. So just for people that are not at all medically impacted, so that you can understand it. It would be like if Loretta and I went out to eat and we were sitting at the bar and we ate our meal. And I said, Loretta, I've got this because you do such a wonderful job with your podcast. I want to repay you. And I give them my debit card and they take my bill and Loretta's bill and combined it, and they get fully paid. And then Loretta gets up to go home and they say, Wait a minute, Loretta, you need to pay for your food. And you say, Well, Virginia just paid for it. And they say, Well, she sure did, but you ate it and it didn't come out of your checking account. So even if someone, let's say Mark Cuban, decided that he loved me so much he was gonna pay CVS for my medication, if he pays directly out of his account, he's gonna have to keep paying over and over because I'm never gonna reach my out-of-pocket maximum.

SPEAKER_01 19:00

Right. And here's the problem that they've totally done away with it. For Wesley's medication, they can no longer get copay assistance. The copay programs were actually finding out what the max amount is they could they could get from the drug manufacturers with that copay assistance and draining that that assistance that's meant for people that truly cannot afford to pay the three, five, seven thousand dollars for such a medication, right? And so the drug manufacturers are like, fine, we just we aren't going to have it. We have no copay assistance for my son's medication. We had to pay 100% out of pocket for that medication because we're we haven't met our out-of-pocket max yet. It is such a it's it's been really hard for us. We may be able to afford it for now, but there's times when things can happen. If someone's hospitalized, something there's another emergency, then you're just out without help. It's so wrong. It's wrong. It needs to go. Should never have been allowed. Yes.

SPEAKER_00 20:01

I don't even know that I think that is if you were gonna list my top things of being aggravated about would be the copay accumulators. I did um provide testimony last May on the third day to uh the PBM reform committee. They were just collecting information and the insurance lobbyist had testified the very first day of the session. And they asked one of the representatives said, This is my second biggest issue with them. If some a patient gets denied their medication, what happens? And he said, Oh, we have to respond within 72 hours. And so the representative just assumed that that meant that in 72 hours the patient was gonna get their medication. And I had to sit there until, and it wasn't three days consecutive, so it was like a couple weeks, period. And I could was sitting on the edge of my seat. I could not wait to get up there. And I said what I had to say, I had to answer the questions, and I said, also, I would like to go back real quick to what Mike, the insurance lobbyist, said. I said what he didn't say was that in 72 hours, they can deny you again. And that I was on a medication for a disorder, one of the twins was on a medication for the disorder, and they still denied his brother for two solid years. The impact that that makes, and you probably know when you're when you have a disorder like us or you are an organ transplant patient, you get to be very close to your physicians. The impact that that has made on the one doctor's office that I go to, that is my main support system. And really, just because I met her when she was a medical student and my doctor at the time was retiring, and I looked at her and said, What are you gonna go do? And she said, I'm gonna actually move closer to you, but you don't want you don't want me to treat you. And I was like, Yeah, I do. But I feel bad. I feel like a burden to her, even though she was always like, I just admire what you do. I admire that you speak out. And and I I didn't for a long time, especially with my Facebook page. I still I don't mind resharing all of your stuff. Everybody, I don't want somebody to think that don't be friends with me because I'm gonna be a burden to you, or I could get so sick that you would think as old as I am now that that. not be my kids, yeah, because they just they're like, no, share, share. And they're the kids at the middle school with Lauren. I mean, it's so funny they come up, they're like, it's Lauren's mom. And I'm just like, and these these kids are aren't even sick. And in the world today where it seems like everything's going wrong, it's just such a blessing to be able to see the the community pull together whenever they're not even sick and just be happy that we're doing things like you and I are doing, speaking out about these these issues because it's not about us. It's about if we've got to go through it, I don't want somebody else to have to go through it alone.

SPEAKER_01 22:33

Amen. I I agree. 100% that's what we do it for. And I know from my page, that's what my Facebook page, my public pages are now really for. I I don't really go into a lot of details about my personal life publicly. But when it comes to this, this needs to be shouted from the rooftops. And there's many of us who are doing it. And yes, I know it may look like that's all we do in a day's time, but there's a lot more to us. We are there there's a lot more to life and definitely and trying to make the most of life with our kids as they're growing up. I know for me that's my biggest thing. But if you look at my Facebook all I do is advocate. But that's because that is that important and we have to let people know. So that way hopefully they'll be inspired to share their stories and create change. So never be afraid to share what you're going through. The right people are going to stand beside you and support you. So you mentioned earlier a little bit about the lobbyists that was there. What role have lobbyists played in shaping the conversation with you?

SPEAKER_00 23:31

Have you any interesting stories I know many of us do but yeah I'm I the right before we provided some testimony to the Senate close to the end of our session this year, I was informed by we we have a group called the Palmetto Health Collective and it's got the Bleeding Disorder people foundation and sickle sill and it it should have the arthritis foundation and all these other disorders that you guys have heard of. But um anyway so I'm I'm not saying I was my Facebook page has actually been reported. I have some of the stuff that I've shared on there and and your viewers might not know but you've seen it. I don't really share anything radical I definitely am not I'm definitely bipartisan on there. If I post a picture with any type of politician it is because they have been supportive of the medical issues. It's not because of what party they are on. But yeah we were accused of being um paid by Big Pharma I was accused that my photo that you will show later um was AI and that I was not sick at all. And I was like listening I am in medical yes they do. And I mean I've had a medical student one time present me with um some photos and I was like oh yeah that was me when I was five this is not this is not something it's really I I'm shocked at how dirty the insurance lobbyists have been pray that they don't ever I'm I'm not gonna get upset I pray that they don't ever have a family member um that falls ill or is chronically ill because then they'll really they'll get it this isn't this isn't pity we just want access to our medication that we used to be able to access five years ago.

SPEAKER_01 25:03

And for your children too you know for your children too. I know at one point you had mentioned not taking your medication to make sure that your children had theirs.

SPEAKER_00 25:12

Loretta today because we're being forced off the medication that we were stable on onto a new one I started and I I was already I mean I'll just be open and honest about it. I knew that the patent was going to run out at some point in time. So for the last past year and a half I've been trying different types of biologicals. One of them sent me from I was going to the gym four days a week and golfing twice a week and walking when I got to the point I couldn't get out of bed. So I was trying to do that before the children had to be switched. And I I felt a lot of guilt when Nathan was nine because I wanted to be able to give him the medication but my mom had gotten diagnosed with cancer and Lauren was just a year old and my family sat me down and said you can't give him the medication and let yourself flare up because you have to be able to take care of everybody. But today was a big day one of the twins has not have not gotten them approved for the new medication. His brother has been and I'm on it. So I it's not as good but it's I'm I'm fine we're we'll be okay with the newer medication. But because of Lauren's age being under the age of 18 I had I looked and I was like okay we've got four shots left and I can that then she takes one every eight weeks actually the three of us actually on the medication. But the one twin is starting to flare and so I there's just not enough time. And so today he came and none of the children know that. So whenever they see this it'll be fine. But I didn't want them to know that because he would have refused to take the medication his sister would have refused to take the medication because they are just such great people and they know that we all need the medication to live. So I didn't think twice about it. I mean I was just and I just said here take this one last shot you get no more this and we've got it we've got to get yours pushed through. So it's it's literally like every time we're not on on the same we don't all take it at the same time and then take it eight weeks later so we're staggered. And I had to do we've kind of had to do that. I've pushed out my medication you know and given them um we're all on the same exact medication. And we've had some a couple extra samples you know from the doctors from well last year. So I was able to kind of carry some over I never want another parent to have to go through that. And if they do I want them to reach out to me and I will tell them that I understand because to be to have to look at I you know you know Loretta you would do anything for Wesley. I would completely not take the medication but to have to choose between the three of them they're all they're all three of my kids and I love them all differently but I love them all equally and I couldn't share that with them and I keep that to myself and to and I'm able to share it with you other people from other the foundations that I've worked with because without being able to share it with y'all I would just go crazy but I can't burden them with that. Like I cannot let them know that that's and Bill who's a lot of you guys know he had a very long discussion with me one time because my kids are 21 and you know if something happened to me they would not know how to get their medication.

SPEAKER_01 28:04

They need you for sure. Yeah because I try to protect them. Anyone that can all help Virginia need to because she's advocating not just for herself but for everyone yes once they turn once they edge age out of your insurance how that is the moment that I would say as a parent you worry the most you as far as the a number of patients that I've seen passing. There's so many in that age group whenever they suddenly have to navigate the system on their own they don't know how to do it. And that's when some lose their lives and it it doesn't make sense. Cannot imagine no having to make that decision and it's not right. And I love that you're advocating to make sure that no mom will ever have to decide themselves or their children.

SPEAKER_00 28:45

I laid in a hospital bed for over three months and I got to Georgia in 2008 and the twins were two and they had told my family to let the twins come in and say goodbye to me that I was not going to come home. And I could kind of hear all of this and I remember my dad everybody had left and my dad got a bad rip for being he was very tall and he had a deep voice and oh he's loud and he's whatever but he could be extremely sensitive when he needed to and he leaned over and he was about this far from my face and he said listen he said you can't go now because somebody's got to fight for these two these kids and I don't know how to do it. And this is a man that had a 4.0 average through college and thought he was smarter than anybody else. And it just it hit me then and I don't know what it was like it just something inside of me you you truly do have the will to live. And at that point in time I just I knew that I had to get up out of that bed somehow and get home because I didn't know that as years down the road I was going to be fighting like this for their medicine. But I just wanted to be there to take care of them because I knew what they were going to go through. And I am so thankful to the medical team and it was the burn unit in Augusta Georgia for those of y'all watching anybody that know Blink 182 Travis Barker was there the whole time I was there from a plane crash. And uh anyway, so I just I just want to make sure that no nobody ever feels alone again. Because it is it doesn't matter. I have tons of friends and none of them are sick and they mean well and they try but until you go through your first denial of not being able to get your medication and your and and going to your doctor and seeing sheer fear on your doctor's face they don't want you to die.

SPEAKER_01 30:18

No yeah definitely not and they they have the solution right in front of them and they just if they could just give it to you they know your life wouldn't be at risk and you would not just live but for it. You would be able to be much more productive in all that you do and be able to be here for your children and watch them grow older and and have grandchildren and all of those things that we want as as moms and for sure like the greed needs to stop because there's no reason for this. You know and I want there to be a day when no mom ever has to make such a decision. Right how how do you balance your emotion and composure whenever you're you're telling your your personal story because I always I still struggle with it.

SPEAKER_00 31:00

You know still well I mean I I throw a lot of humor in there I believe and I would like to if I could if I get to leave a legacy behind I would like to be the comedic chronically ill I don't know I'll have to come up with a good name for myself but I just don't I mean I so I do fear sometimes that I come across not super sensitive when we're dealing with it with my kids because I I feel like I have to be like super strong and just be like let's get this done kind of thing. I break down if it was just me I don't think I would ever cry. I know that sounds weird but I'm like I would just be whatever but especially testifying I can get through all the questions and all the answers and so and then if I have to bring up a kid one of my kids I'll lose it. But yeah I that and I like I said I do have some really I have awesome friends and that's why I don't ever want people to feel like I'm just so I'm all I mean I'm not alone physically just sometimes with these situations and I don't know if I don't know maybe I can ask you a question. I mean yeah sometimes I've just gotten to where I've just stopped not other than do and then making a video instead of trying to talk to somebody that doesn't that's a good friend of mine that doesn't know because it's like I can see it in their face. It's like they have no clue.

SPEAKER_01 32:08

I'm talking Greek I'm yeah I'm just yeah I mean honestly I've gotten that a lot and part of it is for me now it's not just that it's just that they've heard my story so many times it's hard to get them to care enough to get involved and some of them are best friends. And they just she's gonna talk about that again. For me I have a great my family my husband my kids they're always at the heart of what I do for me it's my faith I have a strong faith in God that always carries me through when I feel alone. That's my number one go-to whenever it comes to I need help I don't know what to do I don't know how to navigate this situation I don't know how to understand this piece of legislation there are some amazing pharmacists that I've connected with and advocates that have been through it they know and they're there and I'm just so thankful to them. So that's always helpful because the pharmacists to me have been instrumental my advocacy but I feel like if you can find a good pharmacist to help you navigate this issue that's very helpful too and I do I'm so thankful for all of them.

SPEAKER_00 33:08

Yes Brian Clark is over on I believe I I know he's on the Pound Mental Health Collective with us but he's over the pharmacist in South Carolina and it's just been mind blowing to hear some of the stuff he said that I would never have paid attention to like the small pharma like of how many pharmacists that we have lost in the last past two years. At one point in time it was like 126 or something like that just because we they they can't they can't compete with the CBS care mart and optimal and scripts.

SPEAKER_01 33:35

So those are the PBMs so the PBM CBS Care Mark Optimarx Express scripts yeah I mean it they not only do they get to oversee their own pharmacies reimbursements they also get to oversee their competitors reimbursements like the small locally owned independent pharmacies and they are crushing them by purposefully reimbursing them below their costs being able to audit their own competition.

SPEAKER_00 33:58

Absolutely did you know that was happening prior to your advocacy I didn't I I was totally when I first heard about clawbacks I thought I was gonna I was like there's there's no business that could even function like that. I don't know how there's any pharmacist out there.

SPEAKER_01 34:13

So clawbacks taking back money after they've already reimbursed the the pharmacy and like oh yeah no we want this too and then it a lot of times they end up uh taking more than what they even reimbursed in the first place. It's it was terrible. I know there's so much there that you just know so un American as far as everything that we've been taught and every sense of morale know it's not right.

SPEAKER_00 34:36

And well they the the pharmacists our physicians they all have to take an oath and it's like and that I think I guess that's where if we could summarize it because I know like you said earlier we were trying to give explain some of the things that we were talking about but it it's if you could just put the PBMs need to be regulated. That's really all it is. We're not even asking for them to not exist.

SPEAKER_01 34:57

We're just asking for them to follow the regular I mean they're just well and I mean they shouldn't be able to the certain powers as well they should I mean they can be the processor but they yeah they should not be able to negotiate those rebates and give them ensuring they get the highest kickback and put those medications in the formulary versus one may not give them as high of a kickback but it's a lower price drug because there's some shady deals there that there's definitely a lot of unethical behavior with the PDMs that it really needs to stop. What advice uh would you give to someone who wants to advocate but they feel intimidated.

SPEAKER_00 35:32

They they look at this system they're like this is just wow these are the I was shocked to learn that these corporations that we're up against to get regulations and legislation they're the wealthiest corporations in our foundation like whoa I need to rethink this but no I'm I I didn't because my faith isn't only my I I know that it's not just me you have to have faith beyond but what would you say to um I think what's benefited me the most and I might have gone a little overboard with some of them but there really are some amazing webinars and stuff and you don't like if you want to go to the arthritis foundation you don't have to have arthritis. You can go through their advocacy program especially for somebody like myself with an ultra rare disorder there's not you could you can't Google how do you advocate for this right so I've done the the ambassador program with the arthritis foundation um is it patient risings I did their legislative advocacy program as well. And also you've got to find a local group and like I said with I'm gonna I'm gonna say it over and over for the rest of my life if it wasn't for the Bleeding Disorder Foundation in South Carolina I would not be sitting here today um because I would have certainly given up you just got to be aware that the people that can change make the change are the people that you voted and put into office. And they will listen to you because they know that they're there because their constituent put them there. So if you're sick and you have a problem, I would start there, but if you're not comfortable doing that on your own, you can go on some of the bigger disorder sites even if you don't have that disorder and read and there will be plenty of educational tools and stuff like that. And it really is just a blanket form for every disorder, every way to advocate. But yeah, I mean even especially with myself I've gone on all the you know any kind of medication that might potentially have been used especially with like rheumatoid arthritis and lupus and stuff those are kind of medications they throw us on and say let's see how you do on these I've gone on their support sites and just you know read through what people were going through and all and they're all going through the same they're all having the same problem. They're being the PBMs are switching them off medication that they've been stable on. They're having bad reactions and then they can't afford it because it the cost of the drugs are just outrageous.

SPEAKER_01 37:45

All right and that's a story we can hear too much but eventually it's going to get better. But yeah find the local community group I love that that's a great suggestion you don't have one start creating one. I know even here locally I would love in Missouri to get more people involved and who just want to care and maybe miss once a month you know just to discuss because once you start doing that you can get the the the pressure and the influence that you need to really make a change and we've seen a lot of progress at the state level and I I look for that to continue in more and it's more change I would like to add I think in the past with like especially going to DC pre-COVID and all that there was always I was always paired with a doctor and I'm about to be able to speak to Senator Tim Scott.

SPEAKER_00 38:28

Unfortunately Senator Lindsey Graham has passed away so I'm not certain who's going to take his meeting and then I'll speak to our US House of Representative Joe Wilson. And it's great to be able to speak to those on a federal level but it really starts at home. Like you really have to get involved on a state level and you go and they they know me now they see me walking in if they don't know me they call me the green dress girl apparently I wear a green dress a couple times in a row and they're they are very happy to speak with you because they don't know. They really don't know and they but they do know that they are the end of the line of how it gets changed. They're the ones that can change the law. They're the ones that can make sure that the laws are in place to prevent us from being and I'm gonna use this word abused by the PBMs. We are being abused by pharmacy benefit managers like abused and used yes I I know I just constantly feel like they just use the uh patients with the most chronic conditions to be able to price gouge on medications and to be able to uh hurt local businesses.

SPEAKER_01 39:30

I know for us it was oh this is a specialty medication you can't get this here and we had talked about specialty medications so you had mentioned before in a prior conversation you feel like specialty medications whatever medication that that it's usually expensive that were in my case I believe that they could just price gouge on because what I found out was like the generic medication for my son would have been about $50 but the the PBM when they forced us to melt order reimbursed our own pharmacy and overt that so yeah it had nothing to do with cost but if they labeled a specialty drug and they could steer it to their own pharmacy they could pay that pharmacy many times over what they reimburse as a local pharmacy like 20 bucks for 20 something dollars is what they reimbursed local pharmacy. So it had nothing to do with with cost and the other thing that they like to claim is oh well it requires special handling. Okay so it requires special handling so we're going to put it in if we're lucky and it has to be refrigerated they might try a box with ice packs but most room temperature medications are reaching two times room temperature in mailboxes and trucks and freezing cold when they should put most in back.

SPEAKER_00 40:35

So it's like it's not about the special handling either so this is just about FedEx delivered FedEx delivered our shot the other day and you know there was no cold breeze coming from the from the truck. I was it was I find that it's very comical to me because of the one of the hearings they one of the House representatives asked the insurance lobbyist before I testified he said what is a specialty medication and the guy couldn't answer it. He could the the insurance lobbyist could not answer it. He gave your generic what you you can Google it and it's gonna tell you it's like what you said Loretta it requires special handling or whatever. I mean you would think that then if that's the case you would go to one of the pharmacies that do like compounding and stuff and they would not like publics but like a we've got longs on pharmacy or hearthorn in downtown Columbia. But no I mean from and I they asked me that they asked everybody that they could have to testify they were just like what is a specialty medication and nobody could really and I said I don't know I just feel like it's one that costs a lot of money.

SPEAKER_01 41:32

Get our medication from our local pharmacy. And I feel so much better getting it from what we get from the local independent pharmacy.

SPEAKER_00 41:38

I mean well I know well no I paid out of pocket for Publix the pharmacist knew my family really well one of my relatives worked on his vehicle and I was having problems with the insurance and it was after that long period of stay in the hospital and I'd been on it. They were giving it to me in the hospital and then they decided they wouldn't cover it after I got out of the hospital it was either that or go the boys had just started playing soccer and it was either go miss their first soccer game and go back in the hospital or go pay the $6,000. And at the time that's why I know that drug with that drug cost. And the pharmacist had not seen me he he had seen me recovered or like this and I could hear him and he goes she doesn't want to pay for that and he turned around and saw me and he goes let me see what my cost is I'm gonna give it to you for the cost. And this was a pharmacist at Publix and he said unfortunately it costs us $6100 and I said and I said and he was like I understand now he was like I had no idea that you could look like this that quick.

SPEAKER_01 42:35

Wow that is so sad and but sweet at the same time as sad that well that's we had to get to that's what you got to do Loretta.

SPEAKER_00 42:42

That's what I look every time something I just feels like I'm defeated or I'm just like I how am I going to get through this I just it's either like somebody like that or you guys like other actors.

SPEAKER_01 42:54

Find the helpers find the helpers they are out there and a lot of us are always willing to try to help if we can if we can't we try to connect each other with someone who can help because this is a beautiful community of of people that are coming together to create change and I just appreciate every member of it that absolutely just find the helpers and I I want to just let our listeners know I will be sharing any links that Virginia would like to share I'll put that in the the podcast description um as well as on YouTube. Please just share this this episode is such important information I believe other people are going to find this inspiring and absolutely appalling Virginia's having to go through this again whenever there she was just told it was a bird at the beginning of the year. So yeah absolutely nothing that anyone should have to go through. If today's episode resonated with you please share it with someone that you care about. These stories matter and the more that we amplify them the more change that we can create. If you feel called to support this work and help us to continue sharing patient caregiver voices you can make a donation at patientvoicesandpharmacy.com. If you've ever felt unheard in your healthcare journey know this your voice matters here. And because at the heart of the system and everything that we do is this belief. When patients are finally heard the system will be changed. And until next time I'm Loretta Bosey reminding you that your story has the power to make a difference. Thank you so much, Virginia