[00:00:00] Welcome to the second episode ever of the Pathways in Life Science podcast. I can't express to you how grateful I am for you to join. For those of you who don't know what this podcast is about, well, let me tell you. We dive into stories of people shaping life sciences and biotech. Each episode, we try to highlight scientists, professionals from the lab to the boardroom, entrepreneurs, and innovators, and share their career twists, key decisions, and impact.
[00:00:29] It's packed with hopefully insightful advice and inspiration for anyone curious about the science driven careers, making a difference in humanity. And today is a really important one. I find now she's on the other side of who we normally would be interviewing. You know, we would be interviewing the people that, uh, is trying to find cures for diseases and working, uh, with teams to pretty much, uh, making, uh, the human experience much better for a lot of individuals.
[00:00:59] But this person is on the other side of things. So she's actually one of the people we're trying to help. And her name is Caitlin Tsai, a very courageous young woman fighting the good fight against, uh, the American health insurance industry. I'll leave it at that. I don't want to spoil the interview, but it's a fascinating conversation.
[00:01:19] And she talks about her personal experience going through a rare disease and trying to get the right medication. Here we go. Let's get into it. After reading your story on LinkedIn, I thought it was hugely important to show the other side, basically from the person that all these people are trying to help from your side and your struggles as well, obvious, not just with the, the disease, but also with trying to get help and try to get medication.
[00:01:46] And for myself, like being Canadian, you kind of hear these rumblings of the struggles people go through in the U S of trying to get the right medication. Um, We have different struggles, but not necessarily the same that you have itself of the border. So I wanted to make sure that we highlight your challenges and struggles and Get the word out there.
[00:02:05] Let's see if we can do something about it. I think the more people know about it, the more the right people can do something about it. So I really appreciate you joining. Thank you. That's wonderful. I know we have a rare autoimmune disease. So why don't you just kind of explain to the audience what that is?
[00:02:21] So about three years ago, I started noticing these little red spots on my skin. So one of them would just pop up. Stay for maybe a few days, a few weeks, and then go away. And these were happening all over my body, and I'm like, Huh, is this a mole? Is, do I have skin cancer or something? But then I started noticing bruises.
[00:02:43] Again, all over my body. And then I started having nosebleeds, heavy menstrual bleeding. Then I started putting the pieces together, because at the time I was in undergrad for pre medicine. Bruising, nosebleeds, heavy menstrual bleeding, seems like a blood disorder. I got an appointment with my primary care physician, and she did a blood test and found that I had low platelets.
[00:03:06] So, platelets are those cells that help clot blood, and with low platelets, you can't clot blood properly. That explains the symptoms I had, but it didn't explain why I was having those symptoms. So, I was referred to a hematologist. And he ran a bunch of different tests and found out that I had a disorder where my immune system was attacking my platelets.
[00:03:31] So the platelets that I had worked. My bone marrow was making platelets, but they were being destroyed by my immune system. And this condition, it has a pretty long name, but I'll say it anyway. It's called idiopathic thrombocytopenic purpura, or ITP for short. Okay, I was diagnosed without disease. And obviously we had to do something about it.
[00:03:53] So the first thing that my doctor tried is a class of drug called corticosteroids, or steroids for short. And what these drugs do is that they temporarily suppress the immune system broadly. Since the problem is my immune system, if we suppress that, then hopefully it would stop destroying the platelets.
[00:04:12] And then once we take the steroids off, then hopefully my immune system would not attack the platelets again. The thing with the corticosteroids was this. As long as I'm on them, I'm fine. But then as soon as I get off them, my immune system wakes up again and starts attacking the platelets all over again.
[00:04:29] The thing with corticosteroids is it's not good to take those long term because those could cause bone density, problems with your adrenal glands, all sorts of long term complications. So it's not good to take it any more than a few days. So then my doctor tried something else. It's a therapy called rituximab.
[00:04:46] So that's actually, this might be of interest to the biotech people here, it's an antibody that was originally made in mice. And this antibody targets human B cells, which are immune cells that play an important role in autoimmune disease. We take these antibodies from the mouse, humanize them so the human body will accept them, and then that's going to kill the B cells.
[00:05:09] Hopefully that would help, right? It did? I went into remission for a few months, but then a few months later, my platelet count started trending down again, and it got so low that I actually ended up in the emergency room. My platelet count was so low that it was life threatening. I was actively bleeding.
[00:05:28] I had scary bruises. And I was at risk of internal bleeding. It's not like you felt tired or anything. Is the profusely bleeding if you got injured? Is that kind of the symptoms when it gets bad or do you, you actually get tired as well and lack of energy? Comes when the bleeding is serious. The week leading up to the ER visit, I was just feeling weaker and weaker because I was losing blood.
[00:05:51] I was bruising and all of that. So, I was just feeling weak or interventional and like, I think I gotta see a doctor. This is starting to get terrible. So are you still trying to use this drug or have you moved on to another one? Yeah, so after the emergency room visit. My doctor concluded that the immunosuppressants were not working.
[00:06:09] They'd help me for a bit, and then I, my platelet count would fall right all over again, and then it's not good to end up in the emergency room because I could have died if they didn't find it sooner. So he decided that he will try a new medication called Ultrombopag. So the brand name here in the U. S.
[00:06:26] is Promecta, but I'll just call it Ultrombopag, depending on where our viewers are from, that's the generic name. And this medication is really cool because what it does is It imitates a naturally occurring hormone called thrombocyte, and this hormone is produced by the liver, and it binds to cells called megakaryocytes in the bone marrow.
[00:06:47] These cells produce platelets. So what this drug does is it helps my body make more platelets, To make up for the ones that my immune system is destroying so that I could still effectively clot blood and not just have all this bruising and bleeding and fatigue that I've been having. Since I'm a scientist at heart, having had a science degree, I'm in medical school, learning about how a thrombopag works was captivating.
[00:07:12] I was so grateful for the scientists who developed this drug because it gave me hope that I'd be able to survive and live a relatively normal life despite this disease that I have. But that was until I reached the pharmacy because when I asked how much I need to pay, the pharmacy tech raised her eyebrows and shook her head and she said, I don't think this could be right.
[00:07:33] Let me ask my boss. And I was thinking, Oh, this doesn't sound good. She brought her supervisor to the counter and he said, I'm sorry, this medication is not covered by your insurance. So this is going to cost you over 8, 000 for a month supply. Wow. I just couldn't believe my ears over 8, 000 every month, possibly for the rest of my life is not something I could afford to pay, especially right now, since I'm a med student and here in the U S med school is really expensive.
[00:08:05] So I'm already going into massive debt for my education. I can't afford to pay. Over 8, 000 a month just to stay alive. Well, that's just not you. The majority of people can't afford to pay that. But yeah. I know. Yeah. People don't just have that lying around. So I called my hematologist's office to let them know my predicament that there's this awesome medication that could save my life, but I can't pay for it.
[00:08:28] So they started negotiating with my insurance. But the thing is, there's no such thing as a pause button on diseases. My platelet count continued to hang in a precarious situation and it was threatening to plummet. In fact, it actually was. So my hematologist had to put me back on those steroids as those negotiations with insurance continued.
[00:08:49] But the thing is, is as I said, steroids are not, they're not great because for one, they have pretty bad side effects. They make me dizzy. Sometimes they make me nauseated. Sometimes they make me manic and it's, it's like gambling trying to figure out what the side effects will be for any given day, but they're also immunosuppressive and for me as a med student, that's really hard.
[00:09:09] Because one of the things I love doing is volunteering at a clinic that provides free health care to in need populations in my community. But I had to back out of that because catching a simple infection from a patient could spell disaster for someone like me with an autoimmune disease. And then I also had to put my research endeavors on hold, which was really hard because it's like navigating the insurance was like a full time job.
[00:09:31] Sure. Now, Caitlin, this medication, was that covered by your insurance? And I'm just It was not. It was not covered. Okay. Yeah. After two and a half weeks of negotiation. My insurance stood by their denial, despite my care team and I filing prior authorization, multiple appeals, a formulary exception request, and ultimately what allowed me to access the medication was actually the generous support of my community, but not my insurance.
[00:10:00] Wow. And how did your community become aware of the fact that you needed this? So, out of desperation, about a week after I had been prescribed the drug, and insurance was just denying it, I felt like I had run into a wall. I was thinking, I can't afford this, but I also can't live without it. I just out of desperation posted on LinkedIn about it, and I wasn't expecting anything.
[00:10:24] But then people started picking up the story. They started resharing it, commenting on it. Eventually the local news reached out. And then one of my classmates came up with a GoFundMe and that GoFundMe got shared on the news. And before I knew it, it raised over 22, 000 from hundreds of donors. Some of which actually majority of which I, I never even met.
[00:10:49] It was just amazing to me. It's like, there's this contrast here that. You know, the insurance company, which I had been depending on to help me pay for my medication, because after all, we're paying premiums and all that, they denied it, they, and they persisted in that denial. But then on the other hand, there's my community and actually strangers who didn't even know me.
[00:11:09] It's not the responsibility to pay for this medication for me. And yet they gave me support. They gave me advice. They prayed for me. They contributed funds. And I've been able to take this medication for about four days now. I haven't a month supply thanks to all their help. That is absolutely amazing.
[00:11:29] You know, the human spirit is strong and gives us hope. Can I ask, did they give you a specific reason why the insurance company has denied you from this medication? Like, what was the official reason? So the deal was something called contract exclusion. So what happened was there was some confusion on my family's insurance cards.
[00:11:50] The name at the top of the insurance card, that plan covers Promecta. The thing is, that's not actually the plan we were under. So the plan that we're actually under does not cover Promecta, but it's under a network that has the same name as the plan that covers it. So you see how there's, it's not very transparent.
[00:12:10] That's very confusing. You can name it literally anything else. Why would you name it the exact same thing as the plan that covers it? And then make me think. That I had covered. It's almost like thinking you have a parachute when in reality you have a backpack full of lead when you jump out of a plane, you're going to land and it's going to be horrible.
[00:12:25] So it was contract exclusion, and I have to read you something from the reply that they sent me. I have a letter right here. Sure, go ahead. Let's see, it's right here. For one, when I filed the formulary exception request, they said that your benefit contract does not provide exceptions to tier one coverage on the formulary.
[00:12:44] So essentially they're saying you can't ask for an exception from your contract because your contract doesn't allow exceptions. But then the other thing that they said was about the medical necessity. They say, although the provider feels this medication is necessary, it is a contract exclusion and medical necessity is not a factor in our decision to deny coverage.
[00:13:06] So even if I needed this medication to live just because it's not covered in my contract, they're not even going to consult a physician to ask if it's right that they're denying it. Yeah. Because they admittedly say it's necessary, but they're still not going to cover it. That's insane. My doctor wrote a letter of medical necessity.
[00:13:28] We sent them a 20 page letter explaining what the disease is. We even sent pictures of my bruises. And It's their like, your contract doesn't cover it. We're not giving this any further consideration. Every time we appeal, they just tell us the same thing. It's not covering their contract. We're denying it.
[00:13:44] That tells me that in the U. S., we gotta change our laws. Absolutely. And I might be a little ignorant on this, but if you approach other insurance companies, there's no way they're gonna touch your case with a 10 foot pole because of your situation now. And they know that they're, they're probably going to lose more money than you're going to be willing to pay the monthly fee.
[00:14:04] So thankfully my family will be switching to another insurance provider effective in January. And thankfully in the U S insurance companies are not supposed to discriminate on which patients they accept based on what conditions they have. Okay. But then the thing is that insurance companies can actually change their formularies like every quarter.
[00:14:22] So, even if, right now, my, the new insurance plan says they're going to cover Promecta or UltramaPAG, they could change their formulary, like, the next quarter, and it might not be covered anymore. I've known of a lot of people who that would happen to them. Let's say they need hormone replacement therapy or things like that, and they'd have gaps in their coverage due to this whimsical, Changing of formularies.
[00:14:46] Oh, wow. That's probably in the fine print. In the fine print, indeed. Well, thanks for explaining your story. This is unbelievable. And I'm sure you're not the, obviously, only one going through this. I think that what we need to do right now is even if I got my meds, we need to advocate for the people who don't.
[00:15:03] Because, as you said, there's actually millions of other people in the same situation as me and actually worse. So one of the takeaways that I have from my experience actually is that, so I majored in biotech and during undergrad, I remember that my professor drew this diagram on the board showing the progression of an idea from the hypothesis stage to the in silico stage, the in vitro stage, preclinical stage, clinical trials, eventually becoming a treatment that is available to patients to improve and maybe even save their lives.
[00:15:36] Thank you. And that was a very captivating idea to me, which is why I'm in the field of biomedical sciences. However, with this experience, I learned that there was actually something really important that was missing on my professor's diagram. And that is the access to the treatment. Because there's two sides to making a positive impact on patients.
[00:16:00] There's developing the treatment, But then there's enabling the access to that treatment because breakthroughs in medicine are actually they're pretty much useless unless patients can access them. For example, a trauma pack. It's such a wonderful drug. It's so amazing. But yet I couldn't, there was a time I couldn't access it.
[00:16:17] I was on something else that wasn't good for me. But then the corollary to this is that if you can enable a group of people to access a previously inaccessible treatment, Your impact on that group of people is essentially equivalent to if you had discovered that treatment. So then, it is our responsibility, I think, to do both scientific work and advocacy work.
[00:16:41] Because previously, I thought, I just want to get away with doing scientific work. Because it's, it's objective, you feel like you have some control over it. But then, I think I found that I was wrong. Yes, I'm a reserved person. Yes, I just want to keep my head down, just do my research, treat my patients, and let the people who I think are more courageous tackle the big issues of access.
[00:17:02] But then I realized I had to do my part too. And my hope is that by sharing my story, I can inspire other people to share their stories, and together we could advocate for this long overdue change. The U. S., we have problems with our health care system, health insurance industry, But I'm pretty sure there are other access issues elsewhere in the world.
[00:17:20] And I think as people in the sciences, yes, we should try to find new treatments, but we should also try to help people access those treatments. I couldn't have said it better myself. That's amazing. I'm a true believer of things that happen in life. A lot of it, if not all of it, happens for a reason. And, you know, this has pushed you in this direction, which I think you're doing very well.
[00:17:41] You're obviously a bright young lady, and I think with your voice out there, it's definitely going to help raise awareness on this situation. I'll do my best to help you out in getting the word out there. And in terms of your studies, how long do you have before you finish your degree? So, I just got my first semester of med school done, so I have essentially three and a half more years of med school, and then residency could be anywhere from three to seven years, depending on what specialty some people choose to do a fellowship after that, so still got a long way to go, but, I'm excited to essentially learn how to be a doctor, help my community.
[00:18:19] And now I have this new mission of trying to advocate for those patients who are suffering, because frankly, Going through all this training is not going to be useful if an insurance company could just deny the treatment that I prescribed for my patient. I think there's a stat out there. I'm not sure if you heard, but in the U S I think it's the country that charges like the most for drugs.
[00:18:40] Oh, yeah. Yeah. And in the world, we pay the most per capita for health care. Our lifespan is average compared to other countries that pay a lot less. And I think we actually are the number one for bankruptcies caused by medical expenses in the world. I think it's like 70 percent of bankruptcies in the U.
[00:19:01] S. are actually related to medical expenses. Which is, that, that gotta change. That's crazy if you think about that. Some people think it's just a right. It's your right to have access to these medications and, and be healthy, without going bankrupt, obviously. Thank you so much for sharing your story, Katelyn.
[00:19:20] I really appreciate it. And let's definitely keep in touch if there's any other developments in your story. Definitely let me know. Would love to have you on again. Thank you so much, Patrick.