Fighting for Answers: The Journey from Patient to Advocate
In this episode, Victoria Killian shares her decades-long journey navigating the medical system with chronic illnesses, beginning at age 12 with debilitating back pain. She describes her struggles with missed diagnoses, the eventual discovery of ankylosing spondylitis, setbacks from conflicting medical opinions, and the ongoing search for clarity around a potential connective tissue disorder. Victoria explains how her personal experiences led her to embrace advocacy, eventually becoming a Board Certified Patient Advocate and launching her practice, Chronically Advocating. She discusses the importance of self-advocacy, strategies for respectfully challenging doctors, systemic issues in insurance and prior authorizations, and how professional advocates can help patients facing complex medical challenges.
Resources Mentioned:
chronicallyadvocating.com
Spondylitis Association
Arthritis Foundation
HLAB27 blood test
Remicade, Humira, Enbrel, Symzea (TNF inhibitors)
Cymbalta
California Department of Managed Health Care (DMHC)
Information on prior authorization reforms in California
Pharmacy Benefit Managers regulation in California
=============
TRANSCRIPT:
=============
Host
Victoria Killian, thank you so much for being on the podcast.
Victoria Killian, BCPA
Fantastic to be here.
Host
You have a really interesting individual story as to your own medical background and how you came to advocacy. Why don't you walk our listeners through that story? And I'm sure I'll interject and ask questions along the way because there's so many nuances, but you know, start from the beginning.
Victoria Killian, BCPA
Yeah, so I kind of see my healthcare journey starting at around the age of 12. There was a lot of stuff before then, but around the age of 12 is when I considered myself to be disabled. I was in middle school doing all of the things that middle schoolers do. I was in a performing arts program and went from being a really active kid to not being able to get out of my bed. I had excruciating back pain.
that would not go away. And we couldn't exactly pinpoint why. I also started to have a little bit of digestive issues, but really the main culprit for me was that back pain. There was no injury really that preceded it that I can recall at the time, but it significantly affected my ability to go to school. So I missed
Host
When you when you say back pain, just so I'm really trying to get a picture. mean already I have a I have a 12 year old son, 10 year old daughter, so I'm already kind of put in that place. Was it all over your back? Was it every day all day? Was it a sharp pain? Adult pain? How you know what did your your parents on the receiving end of a 12 year old girl? What did they hear?
Victoria Killian, BCPA
So for me, it was a constant chronic low back pain that made it so that I did not want to sit, particularly in chairs at school that were wood because that's what we had back in the 90s. And so because of that, all I wanted to do was lay down all day, every day, because I didn't know what the issue was.
My parents were actually very receptive. I had had a lot of injuries before that, that my parents always believed me. But when taking me to physicians, physicians were questioning and they, they could not figure it out. They kind of just brushed it off as, maybe she injured herself. Let's try physical therapy. And because I was with a, a well-known large HMO network that kept everything in house.
Their physical therapy was not beneficial for me at the time because of the way that their physical therapy was structured. Luckily, they got overwhelmed and I was referred out later on and saw a physical therapist multiple times a week instead of the once every couple of weeks that was happening with the other physical therapists. And I did start to feel slightly better, but nobody quite knew.
like what the issue itself was. And so physical therapy was kind of the only option at the time. And I was also taking quite a bit of ibuprofen, even though I was very young, because the ibuprofen helped. But I missed all of middle school. And when I say missed all, like nearly the entirety of eighth grade, I did not go to middle school at all. So I was lucky in the fact that they at least pushed us along at that time frame. And by the time
the summer between eighth grade and ninth grade came around, I was able to go to high school. It's like I still had the pain, but it wasn't as bad. I was able to kind of push through it and be a bit more normal, being able to sit.
Host
And when you say it wasn't as bad, it because the pain lessened or you think you got used to the pain?
Victoria Killian, BCPA
I would say maybe more getting used to it as opposed to it lessening or it changing a bit. It wasn't as relentless as it was when I first started having issues. It became a lot more manageable. I also became a lot more active, which will come into play with my diagnosis.
Host
Okay.
Victoria Killian, BCPA
I started and I started doing things that I really loved because I loved the performing arts. I was really excited to go to the magnet school that I was accepted into. and so I kind of just was able to push through now that didn't mean that all of my friends that I had in high school didn't know that I had disabilities, didn't know that I constantly injured myself, that I was always in pain. Everybody knew that. And so
we would do things to kind of get around that. I was really lucky that my friend group, because we were just a band of misfit kids in, know, weird kids that did weird performing arts stuff in school that we all just kind of banded together. And so we would sit in areas that were much more comfortable as opposed to on the benches, we would sit on the grass. Sometimes we would go into the drama classroom to eat lunch. And so,
I was able to do a bit more until about 16. And then that's when I remember one evening eating some pizza and the next morning waking up and I couldn't eat. I was so incredibly nauseous and didn't know why and went on like that for months until I finally started to complain.
because I started to lose a significant amount of weight because I was an overweight kid and I started to lose quite a bit of weight and people started to notice that I wasn't eating. so eventually I got to a pediatric gastroenterologist who did some testing, not a lot, and just told me, hey, you have IBS, you just need to eat more fat, more fiber. And yet I was starting to very much so lose weight and the pain in my back.
was starting to get really bad again. And so by the end of high school, I was advocating for myself. I was pushing through that really restrictive HMO network and trying to see specialists that could diagnose me. And when I ended up in college, I was 19, I finally hit upon a rheumatologist who...
Victoria Killian, BCPA
did the correct testing and really thought outside the box. And he ended up diagnosing me with ankylosing spondylitis. And so one of the hallmarks of ankylosing spondylitis is chronic unrelenting low back pain for more than six months under the age of 40. And to have these bouts, these instances that happen, similar to rheumatoid arthritis where you have flare ups, you can have flare ups with ankylosing spondylitis.
And so I immediately got put on Remicade at that time and did really well. I was off and on still having the stomach issues, but it wasn't as bad when I was on the Remicade, I think because my inflammation was slightly lower. And I did that for a long time, was on a lot of different medications that really kind of helped to control my pain. And I was able to
do everything that I wanted to do with not a lot of restrictions. mean, there were still restrictions. Like I couldn't really go places where I had to walk a really long distance, particularly standing, particularly on concrete was pretty awful. All of college, I had specialized seating for me so that it was comfortable as opposed to trying to push through with plastic chairs. And I did really well.
And just as I was graduating from college, I met my husband, we got married, and I got out of that restrictive HMO network and then started to pursue some of the other issues that I had been having that were still not diagnosed. Got really good physical therapist and just kind of started to push through and thought, you know, like, is this ankylosing spondylitis? I'm not sure. I'm feeling so good right now, but maybe I should continue to get treatment.
and I saw about five different rheumatologists who told me that I did not have ankylosing spondylitis and so they took away my Remicade.
Host
Well, so let's pause there. I have a couple questions. First of all, what is ankylosing spondylitis?
Victoria Killian, BCPA
Ankylosing spondylitis is an autoimmune disease that causes something called bamboo spine. It basically grows bone where it should not be at the connection points of the tendons to the bone. And so, or I believe it's ligaments. I can't remember which one. I always get them switched up. But wherever the connection point is in the bone, it starts to create this inflammatory process that then starts to grow.
bone where it should not be. And most of the time in patients with ankylosing spondylitis, it's centered in the SI joints as well as along the spine. But more recently, they have also another diagnosis that's similar, that has very similar symptoms of pain. You can have bouts of eye inflammation. You can have a co-occurring condition like inflammatory bowel disease or Crohn's disease. And that
Host
Mm-hmm.
Victoria Killian, BCPA
Secondary diagnosis is non-radiographic axiospondy arthritis. So if any of the symptoms are familiar, it's definitely something to look at. A lot of times it's diagnosed through imaging as well as through a blood test called HLAB27. But if you don't have HLAB27, it doesn't mean that you don't have it. It just is a little bit longer of a diagnostic journey to make sure that they're ruling everything else out before treating you.
and it's treated most of the time with first line of treatment is normally anti-inflammatory agents like ibuprofen or Celebrex. If those don't work, then patients move on to biologic therapy starting most of the time with a TNFI, a tumor necrosis factor inhibitor, and then moving on to, a lot of times they'll now move you to Jax, which is a newer line of medication for ankylosing spondylitis.
Host
And what kind of class of medication was Remicade?
Victoria Killian, BCPA
Remicade is a TNFI. Brand names like Remicade, Humira, Embryl, Symzea, those are the primary TNFI medications that patients are on. I'm no longer on Remicade, I'm actually on Symzea. I've run through a couple different medications. Unfortunately, I will never be able to go on Remicade again because I am an unfortunate patient that tried a biosimilar and had a reaction to it. So...
I'm now stuck with some of the other medications.
Host
Sorry to hear that. So why did they take away your diagnosis?
and what did they re-diagnose you with?
Victoria Killian, BCPA
So in seeing a ton of different rheumatologists after I came out of that restrictive HMO network, they ended up basically telling me that they thought maybe I had fibromyalgia, maybe I had something else, maybe I didn't have anything, maybe I just have chronic back pain. And I think it was because at the time...
I wasn't displaying super strong symptoms and I was looking for an answer for this pain that I continued to have while being treated with ankylosing spondylitis that I did not believe to be something like fibromyalgia. Fibromyalgia never really fit for me, but nobody could. Eventually I found out that I have a hypermobility disorder. It has not been diagnosed yet as Ehlers-Danlos syndrome.
And that is probably why I was having extra pain on top of the, the Remicade, just continual breakthrough pain. And so because I was such a complex patient and rheumatology is an art form, it not always do the numbers show you what the patient is feeling and ankylosing spondylitis. Unfortunately, most of the time patients do not have
any positivity in any of the inflammatory markers that they normally search for in rheumatology. So because of that, I got none of these rheumatologists were willing to continue to treat me with Remicade because it is potentially harmful. if you're not treating the correct condition with it. And so when I came off of it, I, I was doing actually pretty okay.
I wasn't really having a lot of issues. I was having a lot of pain. I was having issues sleeping, that sort of stuff, but not the ankylosing spondylitis type issues that I had when I was a kid. Those came back later.
Host
And how old are you at this point when they take the diagnosis away?
Victoria Killian, BCPA
I was about 24, 25.
Host
Okay, so it's already going on 14 years, 12, 12, 13 years, something like that. Just to back up for a second, you said by the end of high school, you were self advocating. Were your parents burned out? Did you want second opinions? What was happening where you felt like you had to kind of take advocacy into your own hands?
Victoria Killian, BCPA
Yeah.
Victoria Killian, BCPA
I felt like, I mean, I have a younger sister. My parents were definitely overwhelmed between myself and my sister. My parents were just as frustrated because they weren't really getting answers, but I don't think that they even really knew exactly what to do. Now, I do remember this. My parents were definitely very supportive.
because I remember one time my dad went to one of the physicians at this restrictive HMO network and he found on a desk of a nurse a book that had all of the phone numbers of all the different physicians, like direct lines to them. And I was having such difficulty actually getting through to these physicians that he snatched the book and gave it to me as a gift.
so that I had phone numbers to contact these physicians because I was having such a hard time and nobody was pushing for me. Nobody within that network was pushing for me. The pediatrician that I had, she really wasn't doing anything. Everybody just kept telling me that you're in pain, that's what it's gonna be, or you're not eating because you're anorexic. And so there was really no...
like look behind the curtain sort of thing, no push forward. So that's, yes, it did come in handy. I ended up calling the head of gastroenterology and telling them how terrible their pediatrician gastroenterologist was because he kept telling me to do something that was making me feel super sick and wasn't looking for any other answers.
Host
Sure. Did that phone number, did the phone book come in handy?
Victoria Killian, BCPA
And you know, this was before the internet had such a breadth of knowledge and information that you could really look at. So I was kind of just doing this by feel at that point.
Host
Okay, so let's go back to when you're 24, 25. They take away the diagnosis. Did they give you a secondary diagnosis or did they say, now we got to figure it out all over again?
Victoria Killian, BCPA
They kind of just stopped. They really stopped because they didn't think at that point that I had any sort of autoimmune disease. And it's really hard to continue to argue with a physician over and over again about your whole past medical history when they don't listen or believe what you're saying. There was only one rheumatologist that I saw that really did his due diligence and went through all of the
the steps that he needed to in order to rule out everything because I, this is why it was kind of serendipitous that I got diagnosed with ankylosing spinalitis when I did. I wasn't showing a lot of inflammation on MRI or x-ray like most patients do, but I had something called a bone scan and every single joint lit up like a Christmas tree. And when they light up, that means, inflammation.
So because I had the HLA-B27 positive gene, I got diagnosed early. But because I wasn't showing a lot of degration at that time, because I had been treated on the immunosuppressor medication, they couldn't see beyond anything and just told me that I didn't have it.
Host
And so you're left without any medication at that point because you don't have a diagnosis to treat. Is that right?
Victoria Killian, BCPA
Yes, yeah, I was on Cymbalta for pain and that was it at that point.
Host
Gotcha. And you said it in passing, they said you're anorexic. Did they ever kind of make you do a psyche valve?
Victoria Killian, BCPA
No, because I kept hiding it well. Basically, I would tell them, I'm not anorexic, I'm totally fine, because when I would start to talk about the fact that I couldn't eat, they would tell me that you're, so I just kind of stopped talking about it. At that point, I just kept my mouth shut. I knew that those people were not gonna be able to help me at that point.
Host
Okay.
Host
Gotcha.
Host
Right, was dismissive enough where you were like, keep your mouth shut, find someone else. Okay, so what happened next after they took away your diagnosis and where did the journey go from there?
Victoria Killian, BCPA
Yep.
Victoria Killian, BCPA
So after the diagnosis, because I had been having other medical issues, I started seeing a really good physical therapist who helped me with some hip problems. And she was the one that said, have hypermobility. And so that was when we started to really do a lot of things to get me some strength. I also, I mean,
I'm leaving out a lot of stuff. I just want to say that because I've had a lot of other random medical stuff that's happened, but this is a short interview. So once we fast forward to, started working and I was doing really well. Fantastic. Loved it. and then I started to have that. can't eat again and not eat at all. I would go to work and not eat anything all day. I would come home and eat a couple bread rolls and then I'd get up and do it again.
And I got so bad that finally the physician, my primary care that I was seeing at the time, she said, you know, I know the head of this, of the gastroenterology department over at this major medical center. I want you to go see him because clearly something's not right. You're losing a lot of weight. You're telling me that you can't eat. Go do that. So I saw that physician and he said, I'm going to have you do this test called the gastric emptying scan.
And I'm like, cool, never had that done, had a crap ton of colonoscopies and upper endoscopies and small bowel follow throughs, but have never had that test done. And so had that test done and it showed that I had gastroparesis, idiopathic gastroparesis. There's no reason, they don't know why. And so I started seeing a physician who was giving me ideas as to how to treat the gastroparesis because there aren't really good treatment options, but at least it kind of confirmed my
High, anything high fiber just makes me feel so incredibly sick. And so because I was dealing with the flare up of the gastroparesis that was so bad, I stopped working and I started to lose a lot of weight. I got down to looking like a walking skeleton for a while.
Victoria Killian, BCPA
I was never on a feeding tube because I was really fearful to get one thinking I have all these skin issues. I just don't think that's going be good option for me. over time, over many years, I eventually started to be able to eat a little bit more, a little bit more, a little bit more and started to gain a little bit more weight. And at that point, I started a job. I started working from home and
about a week into that job, I woke up with an eye that hurt so incredibly bad that I could not open it. No light, nothing. I couldn't have anything touch my eye. It hurt so bad. Saw a physician and she sat back, the ophthalmologist, after looking into my eye and she said, what else is going on systemically?
In working, I started to tell my husband every single evening, my low back is hurting like I like it did when I was 12. But I never put like two and two together like, maybe it is actually actually ankylosing spondylitis. And so I told her that. And she's like, were you diagnosed with ankylosing spondylitis? And I said, Well, yeah, but then a whole bunch of rheumatologists told me no. And she said, No, you have ankylosing spondylitis. What you have is iritis, which is very common in patients that have ankylosing spondylitis.
you are going to need to be on biologic treatment the rest of your life, you need to find a rheumatologist that's gonna actually treat you. So I was re-diagnosed. So iritis is an inflammation inside of the eye. It can be caused by many different things, but is associated with ankylosing spondylitis. I think it's one in four patients. Don't quote me on that though.
Host
So what is iritis?
Host
Got it.
Victoria Killian, BCPA
I think one in four patients will have at least one episode of iritis. It causes the inflammation of the, I think it's the iris area. I also had uveitis, which is again, another section of the eye that ends up swelling up. It's treated with steroid drops as well as dilation drops, which is a lot of fun when you're trying to work for the first time in a long time on a computer.
and so I was able to get through that in a couple of months. took a couple months for my eye to calm back down. I'm lucky that I have not had another reoccurrence since. but that started the, okay, we have ankylosing spondylitis again journey. And then, you know, throughout this whole process diagnosed with, narcolepsy diagnosed with, with, heart issue, just tons of different things.
Host
Mm-hmm.
Victoria Killian, BCPA
that probably all lead back to connective tissue disorder, but that unfortunately for me is still undiagnosed.
Host
And the reason that's undiagnosed is because you can't find a provider who's willing to diagnose it.
Victoria Killian, BCPA
Correct. I've now had three different providers who have seen me in the past several months who just from looking at my skin alone have asked me, do you have Ehlers-Danlos syndrome? But I have to say the whole rigamarole background of, well, I had genetic testing done, but I don't have anything that is known within the collagen genes, but I have an elastin gene mutation.
And therefore, maybe that's the reason why I have this issue. But no, nobody's diagnosed me with Ehlers-Danlos syndrome yet.
Host
and then you kind of put your hands together and say, please, please, please.
Victoria Killian, BCPA
Yes, because at this point, given all of the co-occurring conditions that I have given my past history, Ehlers-Danlos makes the most sense.
Host
What would the treatment options be if you did get diagnosed that are different than what you've tried before?
Victoria Killian, BCPA
That's the thing is that it's not so much the treatment options because I know that a lot of patients, they're hoping for a diagnosis and then they're hoping for some sort of treatment options. For me, the diagnosis would make it easier for me to communicate to medical professionals what I have and how it affects me and why they have to treat me differently than they treat all other patients, particularly in regards to surgical things moving forward.
So for me, it would just make the language of communicating what I have to physicians easier, but not necessarily change any of the ways that I'm actually treating it.
Host
about it.
So this is decades of struggle at this point.
Victoria Killian, BCPA
Yes.
Host
And when did you decide or discover advocacy and get into the world of advocacy?
Victoria Killian, BCPA
So my husband has actually been telling me that I should be an advocate for over 10 years, but I didn't even know how to go about it. And he just said that I should just do it. He didn't even really know that it was a thing. He just thought, you have all this knowledge and information. You should be like using it to help people. because I didn't know anybody and I had never really heard
Host
How did he know about that?
Host
Right.
Victoria Killian, BCPA
heard of advocacy being done in this way, know, professional independent advocacy. I just didn't go through with it. So eventually when the pandemic happened and everything shut down, it made my life as a disabled person much easier because everything went online. And that's when I started to seek out things to do because I didn't have a job at the time. And I was doing contracting work that
obviously was not coming through because the pandemic kind of shut everything down. And I started volunteering for a ton of different organizations doing advocacy for the Spondylitis Association Arthritis Foundation, just tons of different organizations. And then going through all their different advocacy classes of how to do federal advocacy, state advocacy, that sort of stuff. And I came across a couple individuals, Sam and Jim.
Host
Mm-hmm.
Victoria Killian, BCPA
who said that they had just gotten their board certified patient advocate certificate. And I'm like, what is that? And they said, well, you can go take this test. And then you have the credentials that kind of show that you have enough knowledge to start doing some patient advocacy. kind of just is, it's a foundational certification. Obviously we do continuing education units. And so I started looking into that and then.
Host
Mm-hmm.
Victoria Killian, BCPA
Once I hit upon the pack board, I just hit organization, organization, organization that were attached and started going, goodness, like professional patient advocacy is actually a thing and it's kind of this blossoming, like fairly newly constructed thing that I can do.
And that's when I decided, okay, I'm gonna stop trying to chase my dream of doing marketing and communications, and I'm going to go into patient advocacy full force, because it's something that I have a lot of knowledge and information that I share with a lot of people all the time. So I might as well be able to do it one-on-one and actually help patients get through the system the way that I did.
Host
And when did that start for you?
Victoria Killian, BCPA
I took the exam in October 2024, and for the past several months, I have been working on starting my business, Chronically Advocating, which has been launched. You can go to chronicallyadvocating.com.
Host
And do you find that you're working with that population that are dealing with kind of similar complex diagnosis kind of issues that you went through yourself?
Victoria Killian, BCPA
I have not actually seen clients yet because I just launched, but in my personal life, yes, I have actually worked with multiple rare disease patients at this point, helping them, advocating for them, very complex, multi-diagnosis, polypharmacy patients, really trying to get the medical professionals to think outside the box and not just think about.
you know, this is another like run of the mill patient that has like heart disease. And it's like, not exactly. need you to kind of, I need you to think of other things and I need you to rule those out before we go with your main diagnosis because clearly that's not the only thing that's happening here. And so I like complexity because I like to be able to take that individual patient and help them.
to get their medical providers to understand that they are an individual and what they're going through so that the medical professionals can then help them. Because I do think that the way that the industrialization of healthcare has pushed physicians, unfortunately, into these positions of 15 minute, 10 minute appointments, they forget about the fact that there's a lot of other interconnected things that are affecting patients.
And that's where I think an advocate can be really helpful because you can have a longer discussion with an advocate who can then break it down to make it real simple for the medical professionals so that then they can actually help the patient. And that's where I have felt that I have excelled the most is really breaking down all of those different symptoms and putting them into a little chart or something like that for the medical professionals so that they can.
look at it quickly and then give, know, well, maybe we could do this or maybe we could do this or maybe it's this or we need to do this test.
Host
Got it. So interesting. How do you communicate with doctors when you disagree? You could talk to me on a personal level when you disagree with what they're suggesting, other than when you're a teenager and decide, I'm just gonna keep my mouth shut. How do you advocate for yourself in a way that doesn't alienate the doctors or make them write you off?
Victoria Killian, BCPA
I tend to utilize their own language of, okay, you think it's X, fantastic. Can you tell me some more differential diagnoses for these particular set of symptoms that I'm giving you, just so that we can make sure that those are ruled out? And a lot of times physicians will kind of entertain that because that's what they were born into as physicians was constantly sitting there having to think.
Oh, you know, like, what are all these different things that could potentially happen? Or which specialist do you think I need to go to next with my particular subset of symptoms? What could I do that could help me moving forward? What sort of testing can I do? Can you rank the tests in order of importance for me to do? Because as a patient who has multiple conditions, sometimes you can get test overload. Being able to challenge physicians in a respectful way and
get them to understand that they are the most knowledgeable person in that space of medicine and that you are trying to extract information out of them so that you can communally come together to help is really the most beneficial. There are some physicians that it doesn't matter what you do, they will never kind of think outside the box. They will always go by what they want. But I have found
that particularly in younger physicians, they are very much so interested in having conversations about things and they want patients involved in the process. And so if you ask questions that are interesting to them, they will then have conversations with you. And that's the thing is one of my physicians that I had for a really long time who retired,
He said you never want to be interesting to your physician and unfortunately because I have so many rare and chronic conditions I am interesting which then therefore leaves them to be with me longer So while you don't necessarily want to be interesting because that most the time means that you're rare It can be beneficial to patients if you are open to having interesting discussions with physicians
Host
Got it. And I guess you doing that work as an advocate on behalf of clients makes that even easier because you're taking the sting away from the physician being challenged by the patient themselves.
Victoria Killian, BCPA
Yeah, and you're just asking questions. That's the thing is, if you come at it from a point of curiosity and not condensate, I can't remember the word. Correct, yes. If you are not condescending to the physician, if you do not come at it from the point of anger at a physician, because I know that a lot of us, we've come to a physician and we've waited four months for this appointment.
Host
Yeah.
Victoria Killian, BCPA
And we only have 15 minutes and now they're telling me that everything these other physicians said is completely wrong, but they don't have any ideas themselves. And that can be really defeating. But if you come at it from more of a questioning standpoint, from more of a, want to work on this together. And that is how you build the relationship with the physician. I do think that it's more beneficial for the patient, especially if you have an advocate, whether that's a paid advocate, a friend, a family member.
who can ask the questions that maybe you are too fearful to ask because you don't want to mess up that relationship that you have with the physician. I do think that advocates in any way, or form can be beneficial.
Host
Right. And do you see a lot of your work, are you kind of predicting that it will be in this kind of medical navigation space of advocacy? Or do you see yourself also going into some of the other challenges you've had? I'm sure there were insurance issues you mentioned being in kind of like a vertically integrated HMO. Do you have any idea of where you're gonna specialize?
Victoria Killian, BCPA
Yeah, for me, it's complex patients. I actually have a pretty solid background in commercial insurance, particularly in California. California is the only state that has its own independent regulatory body over about 90 % of the insurance plans in California. So I'm very intimately understanding of that because I've had to go through that system many times and also do a lot of state advocacy here in California to kind of change those laws and regulations.
So in terms of fighting for what you deserve within your insurance plan, yes, it's anything to help you with treatment, with tests in order to get treatment, finding specialists, talking to specialists, coordinating care. Yeah, that for me is the primary majority of patients that I really look forward to working with.
Host
Well, since you brought up commercial insurance and advocating for it in the state of California, what are one or two things that you wish could just be radically changed about the way insurance in California is? I don't know what we say practice, but the reality of the state of where it's at today.
Victoria Killian, BCPA
Well, think, mean, nationally, because we've been, I've been working on this with a of other advocates have too, as well as statewide is prior authorization usage, any type of utilization management procedures that insurance companies utilize to try to slow down patients getting prescription medications, tests, surgeries, procedures, that sort of stuff. I really feel like if that could be regulated to a point that is minimal.
for the patient that that would actually make it a lot easier. would also make the job of the regulatory body easier because they wouldn't be receiving as many independent medical review requests, which a lot of times are overturned because these measures that are being put into place while they are to save the insurance company's money is restricting access, particularly for patients that are short on time.
Host
Right.
Victoria Killian, BCPA
and money because a lot of times, know, patients, work all the time. They have families and they can't sit on the phone with an insurance carrier to try to understand why something is covered underneath, you know, this benefit, but it's only covered this amount. A lot of people don't, they don't understand insurance in general. And I think that by not understanding how your insurance works, it makes the system even worse. And then you start taking it out on your physicians.
and your providers. And the reality is a lot of times it's not a provider issue, it's your insurance company. getting rid of prior authorizations would be great, but I know it's not gonna happen completely. And also I know that there is a bill, I'm not sure where it is currently sitting in the California legislator on pharmacy benefit managers. I believe that they are gonna be regulated here and licensed. I think it was actually put into the budget bill that was passed in July.
I think that kind of pulling back the curtain on pharmacy benefit managers and getting a closer view as to what the actual cost of prescriptions is might make it easier for patients in the long run because we will have a better idea as to why some of the things are happening in the way that they're happening with the change in formulary medications, which again can happen about four times a year.
So just because you get the plan with the medications that you want doesn't mean that that medication is going to be on there in three months. And that can be another sticking point, which again leads to prior authorization. So yeah, I think that those things in general would make the patient journey nationwide a lot better.
Host
Right.
Host
Fascinating. Well, your practice just launched. ChronicallyAdvocating.com is where someone who's struggling with the medical system in some way can go and get a consultation with you and kind of explore how you might be able to help. Is that right?
Victoria Killian, BCPA
Yes, correct.
Host
And are you doing virtual work as well as in person, mostly virtual, exclusively? Kind of what's the… Right, because you have your own medical issues to deal with too. It's difficult to kind of go to the hospital by yourself. Gotcha. Okay. But the beauty is that, you know, I think with COVID, everybody got so accommodating when it comes to understanding that Zooms can be incredibly impactful and...
Victoria Killian, BCPA
Exclusive. Yeah, exclusively virtual for the time being.
Victoria Killian, BCPA
Correct, yes.
Host
And it's, in fact, it's more convenient. You don't have to look for parking and all that stuff. Okay, great. And that's the best place for them to find you is on your website, chronicallyadvocating.com.
Victoria Killian, BCPA
Yes, correct.
Victoria Killian, BCPA
Yes, or you can just search my name in a search engine, Victoria Killian. I have also a secondary webpage. I create digital content on chronic illness, disability, insurance related issues. So you can kind of find me anywhere.
Host
Thank you so much for your time and all your insights and sharing your story. was really fascinating to listen to.
Victoria Killian, BCPA
Thank you so much for having me.
