The Financial Cost of Stage 4 ALK-Positive Lung Cancer: Jennifer’s Two Years of Self-Advocacy

Jennifer’s rib pain wouldn’t go away. She was 41 and working from home with a 4-year-old daughter at the time, and because she had no risk factors for lung cancer, she felt her concerns weren’t being taken seriously by the doctor. She was told she had pneumonia and a muscle strain and was prescribed antibiotics and physical therapy. When neither worked, a bronchoscopy and tissue biopsy finally revealed the truth: ALK-positive lung cancer. 

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

The diagnosis came on August 1, 2024. Seven days later, an MRI showed masses in her brain. “For it to go from stage 1 to stage 4 immediately was so hard,” Jennifer says. “I didn’t know how long I would live.”

The medical side of her story is only half of what Jennifer has had to deal with. Days after diagnosis, her insurance denied the first targeted therapy her doctor prescribed. The second one was approved, but left a $6,000 gap between what insurance paid and what the drug actually cost, which she and her family could not cover. Since then, she has utilized manufacturer assistance programs and copay cards to close the gap. Months later, her employer let her go once her leave ran out, and her benefits were retroactively canceled without anyone telling her. The switch to her husband’s insurance took so long she came within days of running out of medication, and she spent the nights before what she thought was her last pill sobbing. Even now, she gets billed for a balance she shouldn’t owe, and has to email the same people every month to get it fixed.

Today, Jennifer treats the financial side of cancer like a job of its own. She researches every prescription over $20, leans on online support groups, files formal complaints, and shares what she has learned so the next newly diagnosed patient doesn’t have to figure it out alone.

Watch Jennifer’s video and read the edited transcript of her interview to take a deeper dive into her story.

• Jennifer states she felt her lung cancer was initially diagnosed as pneumonia and a muscle strain because she was young and had no risk factors. It took a bronchoscopy and tissue biopsy, after antibiotics and physical therapy did nothing, to reveal stage 4 ALK-positive lung cancer. 
• The financial strain began within days of diagnosis, when insurance denied her first targeted therapy and covered only a portion of the monthly cost of the second therapy. A manufacturer assistance program closed the gap. Help exists, but Jennifer had to find it herself.
• Jennifer refused to accept treatment gaps caused by paperwork. When switching from one targeted therapy that stopped working to another, authorization delays cost her a week, and a later insurance change nearly cost her two more. 
• Jennifer now checks every prescription over $20 for a copay card, a habit that took her blood thinner from about $900 to $10 a month. She saves the cards in her phone’s wallet, screenshots them, or prints them. It’s a small system that came out of two years of fighting bills one at a time.

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Jennifer’s Diagnosis Facts

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This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

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Two years with stage 4 ALK-positive lung cancer, and the misdiagnoses that came first

I’ve been living for about two years since my diagnosis. I was diagnosed in August of 2024, and it is now July of 2026, so almost two years. I was first diagnosed after having some symptoms, and I had a few misdiagnoses. Because I was young and I didn’t have any risk factors, they didn’t really take things seriously, or so I felt. I was diagnosed with pneumonia and a side muscle strain, so I was prescribed physical therapy and antibiotics. And when that didn’t work, I was eventually given a bronchoscopy, which determined that I had lung cancer. They did a tissue biopsy, and it came back positive for ALK lung cancer.

The shock of my stage 4 lung cancer diagnosis

Initially, when they diagnosed me with lung cancer on August 1, 2024, I was in complete shock. I’d never been a smoker. I didn’t have any of the risk factors. I thought that I had taken good care of my lungs and that that would be the last cancer I would get. Plus, I was only 41 years old, and I had a 4-year-old daughter. That was hard enough. And then seven days later, I got an MRI of my brain, and they told me that there were tumors or masses in my brain. That was really hard. For it to go from Stage 1 to Stage 4 immediately was so hard, and I didn’t know how long I would live or anything.

The emergency room, the fear of brain surgery, and deciding I couldn’t go back to work

Initially, they told me to go to the ER, and I didn’t know if I would stay there, or if I’d have surgery, a brain surgery at that, or what would happen. So when they told me that since I didn’t have any symptoms, I wouldn’t need surgery, that was a relief in the large scheme of things, but it was still really bad news that I had stage 4 lung cancer. I was mostly scared for the future, for my daughter. Because I didn’t even know what my treatment would be or how my body would respond to the treatment. It was so overwhelming that then, I decided that I didn’t know how I would go back to work when I would have brain radiation in the future. And just dealing with things emotionally on its own is more than someone could handle 100%.

Rib pain, fatigue, and a cough that wouldn’t go away: My first symptoms

My initial symptom, when I first started noticing something was wrong, was my left rib pain. It hurt more when I was sitting, and I was sitting for work. I had a desk job, and I had to take breaks more often. I would have to nap and change my position. And I remember trying to get comfortable in my chair and taking ibuprofen. I thought it would just go away on its own, but it didn’t. It persisted.

My next symptom was fatigue. As I said, I was having to take naps almost every day after work. And then I noticed I had an interruptive cough that just wouldn’t go away. And I wasn’t sick. I didn’t have a cold. But when I talked to someone, or said certain words, or laughed, I would just start coughing. And it just continued with me for months.

Working from home in a high-stress job when lung cancer arrived

It was after COVID, so my company decided that we would be working from home permanently after it worked out for them. When everyone worked from home during COVID, they realized that it was financially better for them. So I was working from home. But it was a stressful job. I was dealing with fatalities, attorneys, and negotiating the values of serious car accident claims for people with injuries. And I just remember, when I got stage 4 cancer, I was like, “I cannot do this every day. I can’t hold this many balls in the air.” And also being a mom and going through treatment, I was like, “There’s no way. It’s just too much.”

Terminated when FMLA ran out, with benefits canceled retroactively

At first, my employer was really cooperative. Everyone was caring. Everyone seemed to understand. I was on short-term disability initially for six months, and everything seemed to go smoothly until my Family and Medical Leave Act leave or FMLA ran out. And that’s when it seemed like someone should have been noticing what was going on and what my case was, but it seemed like they just went through the motions of the process of when someone runs out of FMLA. They pretty much terminated me, but nobody told me. And my benefits were retroactively canceled when I had confirmed that they were good through February. They canceled them back to February 6, which was my termination date, and I didn’t find out until February 16. It was crazy.

Brain radiation, alectinib, lorlatinib, and the road toward no evidence of disease

Initially, I was treated with brain radiation. I had two large masses in my brain, and they did some pretty intense targeted radiation on those two spots. And during that time, when I was first starting radiation, I also started on my targeted therapy, which was alectinib, and I would take eight pills a day. I did that for a year before I got progression, toward the end of 2025. Well, it was September of 2025. And then I was moved over to lorlatinib, which is a different targeted therapy, and I take one pill a day for that.

I’ve also had several zoledronic acid infusions for my bones, because the cancer had spread to my bones, and they didn’t want them to weaken and break. I’ve had bevacizumab for brain necrosis, which is what happens after you have radiation sometimes. The area around the radiated part can start to die, and that helps treat it. And I’ve also been on steroids a few times, at the very beginning of my diagnosis and then when I had brain necrosis.

And soon I’m about to go through four rounds of chemotherapy. The good thing is I only have one spot on my liver now. I don’t have any cancer anywhere else. So they’re hoping that the chemo will reduce or eliminate that spot. If it doesn’t eliminate it, we may do radiation on it to possibly eliminate it. And then I may be NED, no evidence of disease. So we’re hoping that will be the case. And I also have to go on bevacizumab again for a little bit, because I have a little bit of swelling in one area where they did brain radiation.

A $20,000-a-month medication and a $6,000 gap: Managing the cost of lung cancer is a financial full-time job

I think I realized this just a few days after diagnosis. I realized it when I tried to get my targeted therapy medication, and my insurance company denied the first one they prescribed me. So then I went to the second one, and we pushed for that, and they decided they would cover it. But then I realized, “Wait, this medication is over $20,000 a month, and my insurance is telling me they’re only going to pay about $14,000. I don’t have the other $6,000.” So I didn’t know what I was going to do.

So that’s all I worried about at that moment. And then bills started coming in: my ER bill from when I went to the ER, my scans, my biomarker testing, all the different people I’d been seeing, all the different specialists. And it was becoming overwhelming. I just had to handle it one bill at a time. And I did my research and tried to figure out if there was any way I could lower these expenses. Even just calling them directly: do you have a payment plan, without interest? So I realized pretty quickly that it was going to be a huge financial strain.

Anger, frustration, and fighting for what I actually owe

A lot of it is anger and frustration. It makes you feel like these companies don’t care. And I felt like, “I’m fighting cancer, and now I’m still having to fight for what I actually owe.” You wonder, “Why can’t people who’ve been through this before help me?” But you can also reach out to support groups. There are plenty of people who’ve been through what you’ve been through. But yeah, it makes you feel just like you want to stop, but you can’t. Because if you don’t pay the bill, or you don’t get the medication you need, you’re not going to survive.

Facebook support groups and, surprisingly, AI: Where the answers came from

In the beginning, a lot of it was support groups, especially online. I have some Facebook support groups. And so whenever I come to a dead end, and I feel like I just can’t find the answer on my own, I’ll post on there, and there will be several people reaching out to me and guiding me. And now, it’s really crazy, because I never wanted to use AI, but AI has really helped me a lot in just getting the information I need to me, so I know who to contact, what phone number to call, what website to go to, and what kind of programs they have available for this certain type of drug or this certain type of treatment.

(Editor’s Note: Jennifer describes using AI to help source information regarding her treatments. Memorial Sloan Kettering Cancer Center, one of the world’s leading NCI-designated cancer centers, supports this use, noting that patients who consult AI before appointments often ask more informed questions. Experts recommend AI as a complement to your care team, not a replacement for clinical guidance or mental health resources. Always discuss your results and treatment decisions with your oncologist.)

Two medication delays: Progression, paperwork, and refusing a gap in treatment

There have been two times when I felt like there was a delay in getting the medication to me. And the first time was after my progression in September of 2025, because I was switching from alectinib to lorlatinib, and they had to get authorization from my insurance company, which they got verbally, but then it took a long time as far as the paperwork went. And so to get the medication, I would have had to pay thousands of dollars if I wanted to get it immediately. And I wanted to get it immediately, because you have the fear of progression. I was like, “I’m already progressing. Time is ticking. Cancer doesn’t wait. We’ve got to go.” But that would have cost me thousands of dollars, and I would have had to learn how to get reimbursed, and who knows how that would have gone. So anyway, I think it was about a week’s delay. But a week’s delay, when you feel like your cancer is progressing, feels like forever.

And then the second time was when my employer retroactively canceled my benefits, and I had to move to my husband’s insurance, even though there wasn’t a coverage gap, because it was the same cancellation date and the same effective date. It took so long to process that change and get the specialty pharmacy on board that I would have had a two-week delay in treatment. But I chose to go to emergency sources. I said, “I can’t skip.” And there are ways to do it, but I’m not going to talk about it exactly. I just did not want to have any gap. I mean, I was sobbing in the time coming up to my last pill. I was distraught. I was crying. I was taking baths and just sobbing. It was awful. And yeah, eventually I did get my medication, but it took my insurance company changing specialty pharmacies, because they wouldn’t even listen to my insurance company on the process they needed to follow. So it eventually worked out. But I was like, “I’m not going to take two weeks off treatment just because of administrative delays.”

Hours on the phone, every month, for a $0 balance I’m owed

I have spent hours on the phone for days on end, trying to get different organizations to communicate with each other so that I can get my life-saving medication at the amount that it should be, which is zero, because I’ve exhausted all other options. And the only way that my insurance company will pay more money is if I’ve exhausted copays and assistance programs. That triggers my additional savings plan to get into place, which is a $0 amount to me. But every month, I still get this notification that I owe $6,700, and each month I have to email the same two people from the two different companies: what’s going on? And I don’t understand why that is. And I don’t understand why they don’t seem to want to fix it. And I can’t be the only one in this boat. It’s mind-blowing, to be honest. I don’t know why they would not fix it if I’m emailing them every month. And I can’t be the only person doing this.

Why isn’t there someone at every cancer center to help with this?

I know some things just don’t make sense. I wish there were a better way. Like, why don’t we have someone designated at every cancer facility to help with these sorts of issues? You know, direct the patients in the way that they need to handle financial burdens. And the fact that organizations don’t speak with each other.

I often wonder to myself, I’m pretty healthy for having stage 4 ALK-positive lung cancer. I have mental capabilities and physical capabilities that not a lot of people in my position have. And that makes me really sad for them. And that’s why I push so hard, and I spend so many hours on the phone with these companies, because I hope that they will change. Because I could just imagine someone who doesn’t have family, who is alone and isn’t well. How would they survive, not knowing what to do and who to call? They just might give up. And that’s sad.

Filing complaints and reaching back out, so the next patient doesn’t have to fight this hard

Like I said, when you’re doing the same thing every month, about prescriptions that you’ve been on for over a year, that have already been approved by your doctor and your insurance company, and yet you’re still having to send the reminder email that you need the trigger to be pushed or pulled to get the right balance, the one that you’re paying a premium for. I just don’t understand why that is the way it is.

I would love it if someone in the ALK lung cancer community, or even the lung cancer community, just reached out to me when they’re first diagnosed.“These are the things you need to do, and this is how you need to do it.” And beyond that, it’s like, “Why does that have to happen? Why do people have to apply for copay cards or manufacturer assistance when they’re fighting for their lives, and they have a terminal illness? Can’t that just be automatic?” Or is it just really that the healthcare system doesn’t care, or they just want to make the most money they can? And they might also think, you know, “Some people will pay because they have enough resources, and some people won’t, so let’s just leave it that way.” I don’t know, but it’s frustrating.

Copay cards took my blood thinner from $900 to $10 a month

I definitely feel like it’s something that people don’t talk about enough. I remember, in some of my darkest times in the last two years, even putting it on social media and trying to get the company or the manufacturer’s attention. And a lot of times, their customer service will reach out to you. I’m not sure how to get people to start talking about it more. Or maybe people are afraid to talk about it, because they don’t want to feel like they can’t afford it. I’m not sure. But I feel like there just need to be more programs. And I think there are out there, you just need to look for them, maybe search for them online, but not everyone has that opportunity or that resource.

But I’ve found that every time I get a prescription now, if it’s more than $20, I’m looking for a copay card. And you usually find it. And a lot of them you can save in your Apple Wallet or your Google Wallet. And if you can’t do that, you can take a screenshot and keep it in a folder or an album in your photos. And if you’re really old school, then you can print it out, so you have it with you. I think those have been really helpful for me. My blood thinner went from about $900 to $10 a month. It was crazy. Even the people who work at the pharmacy were like, “What? This is crazy. How’d you do that?”

Dipping into savings, a GoFundMe, and a kind neurosurgeon: How the costs of lung cancer touched my family

As far as it goes with my husband, he’s like, “Whatever we need to pay to keep you alive, your life is worth more than that.” Of course. But we’ve had to dip into our savings a couple of times. And luckily, I’m really good at researching whether or not a company has an assistance program for the year, or a copay card.

I even had a neurosurgeon come to one of my radiation appointments and scan reviews, and I did not know he was coming, and he was out of network. He was the neurosurgeon who first saw me at the ER right after my stage 4 diagnosis. But they wanted to charge me this huge amount of money for him. He just came; he wasn’t even the main doctor, so I didn’t understand. But he was really kind, and he just wrote it off. I called him directly. So things like that help reduce the burden.

Also, my friend set up a GoFundMe account when I first got diagnosed, and that slowed down everyone’s initial shock. Everyone wanted to help. And I’m so grateful for that. But those are just little things that have alleviated the burden. We’ve still dipped into savings a couple of times or had to spend less. Things we wanted to get, we didn’t get. But you’ve got to do it to survive.

When you fix one problem, there’s another: The exhaustion of stage 4 lung cancer

It’s never-ending. That’s the other thing. You think that because they got it figured out one month, they’ll continue to figure it out. But it just seems like there’s always an issue. There’s always something that you have to fight for yourself and advocate for yourself. I don’t understand, but it’s just the truth. It just keeps coming. When you fix one problem, there’s another. And it’s just what I’ve come to expect. And I wish I could spend less time on things like that, because I’d have more time for living my life. And, you know, I don’t know if my life is going to be shortened or not. I hope not. I hope I live a full life. But the reality is that my life will probably be shortened by this diagnosis, and, unfortunately, I have to spend time doing these things instead of just living life, being with family, and being with my daughter.

Don’t give up: There is always a way to pay for it

I would say: don’t give up. There’s help. There are so many programs out there. If you just Google your medication, or your procedure, or whatever the treatment that you have is, and you feel like you can’t pay for it, you might just find ways to save money. Ask about the financial assistance programs. Ask about payment options. If there’s not an assistance program, talk to people, like your local cancer community, or things like that. Just don’t give up. Because there’s a way to pay for it.

Five days from running out of medication, my support group saved my life

There were times when I didn’t think to ask for help. I was so overwhelmed by just everything going on, and by the thought of not getting my life-saving prescription on time. I was overwhelmed. And I was just falling apart and crying, and I didn’t know what to do or who to turn to. And then I was at the end of everything that I had thought of. And I was like, “Wait. I haven’t even asked my online support group. Why haven’t I thought of this until now?” I’m about five days away from running out of medication. And it just popped into my head, and they were so helpful. They literally saved my life.

And I think you’re stronger if you ask for help, because we’re stronger together. You know, more brains make more ideas.

A message to the healthcare system: Don’t make the patient the middleman

The only thing I could say is, and I don’t know who this is to, but just to the healthcare system in general: I wish that their bottom line was to get the patient the help they need, and to make their employees accountable, and to not make the patient be the middleman. Patients are already going through so much. We pay for our premiums. We pay for the medication.

I would just say, I would like them to try to help us the best they can. And even documenting the conversation that they had with the patient the last time they called is just a huge help. I’ve told my story to employees over and over for weeks on end, and I can tell nothing’s ever been documented. And I just think that they need to step up and do the job that they’re supposed to do, and help the patients, which is the purpose of their job.

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This interview has been edited for clarity and length. The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story. This content does not replace professional medical advice.

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