The Cost of Cancer: Advice on Insurance, Planning and Paying for Treatment

Dr. Diane Reidy-Lagunes:

Hard-won advances in cancer treatment have saved lives often with less side effects, but there is one devastating side effect that is growing in intensity and frequency: financial toxicity. It's a condition that occurs when the bills come and the anxiety impacts your health. It can lead to impossible choices and creates a crisis for many. Pay tuition or pay for chemo. Pay for meds or eat. Will I need to sell my family home to stay alive? Your money or your life. We're going to have a hard conversation about this reality right now. Hello. I'm Dr. Diane Reidy-Lagunes from Memorial Sloan Kettering Cancer Center and welcome to Cancer Straight Talk. We're bringing together national experts and patients fighting these diseases to have straightforward, evidence-based conversations. Our mission is to educate and empower you and your family members to make the right decisions and live happier and healthier lives. For more information on the topics discussed here, or to send us your questions, please visit us at mskcc.org/podcasts. When people get cancer and someone's life is on the line, nobody wants to talk about money. And the reality is no one has any idea, doctors included, of the actual cost, but hey, that's why you have insurance, right? It'll be taken care of, right? But later, when the smoke clears, hundreds of thousands of dollars in bills show up and no one had a clue they were coming. It's as big a shocker as the diagnosis itself. Joining me today about this is Dr. Fumiko Chino, radiation oncologist here at MSK. She's a noted researcher on affordability and patient costs and is the very first recipient of the Excellence in Equity Award from the American Society of Clinical Oncology. Also joining me is MSK's Emeline Aviki, gynecologic surgeon and head of the Affordability Working Group. Emeline also holds an MBA and has studied this problem from every angle. Ladies, welcome to the show.

Dr. Emeline Aviki:

Thanks for having us.

Dr. Fumiko Chino:

Thank you so much for having us.

Dr. Diane Reidy-Lagunes:

It's so great for you both to be here. I'm really honored and very excited. Fumiko, you have a personal story that really reflects what we're talking about today. Your husband Andrew, a PhD candidate, just starting off in his career with student insurance, diagnosed with an aggressive type of neuroendocrine carcinoma in 2005. You guys were so young. His insurance at the time came with a lifetime cap of $500,000, which you quickly surpassed, and the bills just kept coming. Sadly, he passed in 2007, as you know, and the grief comes hand in hand with crippling bills and an army of nasty bill collectors. Can you share a little bit about what was going on at that time?

Dr. Fumiko Chino:

Absolutely. There's no guidebook for being a young widow and I think that all-consuming grief, it took a long time for me to recover and to kind of right myself onto a path. I think the financial burdens of his cancer treatment, though, were that extra layer of stress and they really hung over me like a dark cloud. I was in my late twenties and I was trying to reinvent my life. I was trying to get back on a path and these threatening bill collector calls, these letters in the mail. It's not just the patient that gets affected from cancer treatment cost, it's the entire family unit. If anything, the one silver lining of what happened to me is that it really charged me personally to make a difference, to try to change the system from within. And that's what led me to go to medical school and ultimately to do the research that I do in financial toxicity.

Dr. Diane Reidy-Lagunes:

Emeline, the numbers are undeniable. 70% of cancer patients are worried about their ability to pay for their treatment and cancer patients are two-and-a-half times more likely when compared to the general public to file for bankruptcy. Are we underestimating the magnitude or the enormity of all of this that's going on?

Dr. Emeline Aviki:

First, our best data suggests that those numbers are grossly under-reported. But even using those numbers that we have, I would say that we're underestimating the magnitude both on an individual patient level where there's no routine screening for this, and also on a societal level, which would include family members who are affected financially by their loved ones' cancer treatment. So yes, we are grossly underestimating those numbers.

Dr. Diane Reidy-Lagunes:

Fumiko, like you said, it's not just about paying the bill. Have you noticed, for example now in your patient practice, that patients are actually making decisions that may compromise their health?

Dr. Fumiko Chino:

Patients are having to cut corners. They're having to make incredible sacrifices in order to afford their care. And it's not just using savings or going into debt, which certainly, you know, is what happened to me. We know that patients are having to skip supportive medications. They're having to potentially delay scans. They're having to put off the diagnosis and treatment of maybe mental health concerns. When my husband died, my health insurance ended. It was hard. It was a real scramble. This idea that affordability is the barrier between someone getting a cancer treatment versus paying to keep their lights on, it's shocking. We live in the best society, we have the most resources, we have the best research, and yet we still have patients that are routinely falling through their cracks, and it's just unacceptable.

Dr. Diane Reidy-Lagunes:

And let's talk about that, cause you're absolutely right. I mean, that's the 800-pound gorilla in the room. We, the United States, pays more healthcare than any other nation. Who is to blame for that? Is it our hospital charges? Is it the business of medicine, pharma and prescription, insurance companies? Governments inability to negotiate, you know, sort of a broken system? Any insight into how we got here?

Dr. Emeline Aviki:

I agree with you, Diane. As a nation, we have a major problem when it comes to the cost of healthcare. So starting with the insurance companies or payers, deductibles have more than quadrupled since the early two-thousands. In the early two-thousands, the average patient annual deductible was $300. Reasonable. By 2020, it's over $1500 per patient annually. Another example from the pharmaceutical industry: there is a soaring cost of cancer drugs. The average monthly cost of newly approved oral anti-cancer drugs in 2000: $1,900. Still very high, but by 2015 it was over $11,000 and since that time has continued to rise. Now back to the insurance sector, patient out-of-pocket costs over that same time period have increased by more than 15%. So we've not only seen an increase in the cost of treatment, but we've also seen a redistribution of those costs onto patients.

Dr. Fumiko Chino:

And I'll just add onto that, we know that the United States is paying more for our healthcare but I think, sadly, we also know that we're not getting more for those extra dollars. We're not actually getting better outcomes for that investment. And so I think it is very clear that the healthcare system is broken. I think the problem always is, is that we have very differing ideas of how to fix it.

Dr. Diane Reidy-Lagunes:

Here at MSK, as you know, we actually have a course for patients to take to understand their insurance, but you always advocate reading the fine print. So any words of advice on trying to understand your insurance when you have a cancer diagnosis?

Dr. Fumiko Chino:

I am a physician, I've had personal experience in financial toxicity, and I do research in healthcare and access, and it still took me about a month to pick out the health insurance plan for myself. It is not clear. So certainly patients aren't taught, but even physicians aren't really taught. We have like this health insurance literacy problem in the United States because the health system is also just incredibly complex. No one is ever expecting a cancer diagnosis. When my husband was diagnosed in his twenties, it was devastating, and we only found out about how underinsured he was months after diagnosis when we started getting those bills. Cancer billing is its own incredibly complex and opaque process itself. So sometimes actually the best way of navigating your health insurance is actually to speak to an expert. And I feel so blessed to be here at MSK because we actually have people who can help you understand your health insurance a little better. I wish I had had that when my husband was diagnosed and treated.

Dr. Diane Reidy-Lagunes:

Emeline, let's envision that I do have a diagnosis of cancer and I have this insurance policy. How do I anticipate what costs there may be? It's just so opaque. I order a test, I have no idea what that cost of that test might be. It's like going to a fancy restaurant and ordering the top bottle of wine without having a clue how much it might cost. So any advice from a patient perspective on having such conversations to maybe try to be proactive?

Dr. Emeline Aviki:

It's actually a question I get commonly: How can I pick a plan where I'll be protected or safe if I am unfortunately diagnosed with cancer? So for the majority of Americans, of course, your insurance options are only available through your employer. When you're trying to choose between plans, I have two simple recommendations for what I'll call a cancer-friendly plan. So the first is to make sure that coverage includes at least one NCI-designated cancer center that is in-network. So the term "in-network" and "out-of-network," they're very important and we don't discuss them enough. In-network coverage generally means that you'll be required to pay less for services, if anything, that are administered by that facility and that you're less likely to require pre-approvals, which can delay your care. The second tip to choosing a cancer-friendly plan is to make sure you have something called specialty pharmacy coverage. Specialty pharmacies, unlike your typical CVS and Walgreens, are pharmacies that dispense oral anti-cancer drugs. It is extremely important that your plan has specialty pharmacy coverage. So now this is so important because specialty pharmacy coverage is an area where many patients diagnosed with cancer have the greatest burden of unexpected out-of-pocket expense. Now, if you're covered under Medicare, very simple recommendation: purchase prescription drug coverage, or Part D, as soon as you enroll. If you delay enrollment, you'll pay a late enrollment penalty for the rest of time once you do enroll. So just be sure to enroll in that Part D benefit as soon as you enroll in Medicare, so that if, God forbid, you are diagnosed with cancer down the road, you will have benefits when it comes to oral anti-cancer drugs.

Dr. Diane Reidy-Lagunes:

Let's get to more of those solutions. Fumiko, anything else that you can sort of offer in terms of advice for a patient that is now diagnosed with this devastating cancer?

Dr. Fumiko Chino:

Part of it is knowing what costs can be anticipated and thinking about maybe worst-case and best-case scenarios in terms of your cancer path, and that actually helps you plan better. We have good research that patients who understand their expected burden are less surprised by bills and are more likely to be adherent, meaning to not skip out on treatments, if they at least knew kind of what was coming. That's a real flaw in the US healthcare system, is that you can get these surprise bills. I can certainly speak to that for myself. At a certain point, we just kept getting bills in the mail and I just stopped opening them. You just want to focus on cancer. You want to focus on treating your symptoms, of recovery, and the bills are just one extra layer of stress that sometimes you just, quite frankly, can't deal with. But I don't want to discount the fact that you have, within your own power, the capacity to make your own decisions, to really think about what's worth it, what sacrifices you're willing to make in order to afford your care, and what's too much. Have those conversations when you're healthy or maybe at the beginning of a diagnosis. We know at some point your family may be making decisions for you. It's very helpful for them to know what your loved one wants, to know what they're willing to put up with. And for me, I had discussions with my husband about what happened if his breathing became too labored and they wanted to put him on a ventilator, and I knew that he did not want that. That was a bridge too far for him. When the time came for that, I knew what to do. But unfortunately, family members are placed into these impossible situations all the time. It's hard to have these conversations but I think they're really important.

Dr. Diane Reidy-Lagunes:

Emeline, so we talked about what the patient could potentially do to try to stay empowered and be proactive. What about us, as docs and healthcare professionals and our hospital? What can we do? And in particular, can you talk to us a little bit about your Affordability Working Group?

Dr. Emeline Aviki:

Yeah, happy to. So let me ask you this: When was the last time you called a pharmacy, as a patient, about a prescription, and how long, assuming you got through at all, did it take you?

Dr. Diane Reidy-Lagunes:

A long time.

Dr. Emeline Aviki:

Long time. As a prescribing physician, when I call the pharmacy, I'm option one and I immediately chat with the pharmacist. So that small example speaks volumes about our entire industry and why we believe it is critical for members of the healthcare team to advocate on behalf of patients, particularly when it comes to financial burden affecting their cancer treatment. So with this in mind, we founded the Affordability Working Group at MSK, which is a team, including Dr. Chino, of dedicated clinicians, researchers, hospital administrators, nurses, social workers, analysts, who have all made it our mission to improve the affordability of cancer treatment for patients. We do this through developing interventions that can help patients, seeing opportunities and seizing those opportunities at any point or stage in the patient's care path.

Dr. Diane Reidy-Lagunes:

You recently had a victory. We talked a little bit before about the pharmaceutical astronomic costs of drugs today. Could you share a little bit about how that went down?

Dr. Emeline Aviki:

I'd love to, yes. So there's a new drug called Lenvatinib. It was approved in July of 2021 for use in certain women with recurrent endometrial cancer. 70% of patients in the trial that led to its approval had to have a dose reduction, and you see it in practice. So with this in mind, we noticed that the packaging used by the manufacturer required a completely new prescription for many of the dose reductions. Each prescription costs $23,000 plus a month, so we decided that this could be a problem. We met with the manufacturer of the drug and the outcome is that they ultimately agreed to proceed with expanding a dose exchange program to then cover all doses of the drug, free of charge to patients. So an example here where we really have a lot of power in terms of advocacy to eliminate financial toxicity for patients.

Dr. Diane Reidy-Lagunes:

Beautiful work.

Dr. Fumiko Chino:

I can't tell you how enthused I was about this response, and this is the dream for me in terms of clinical research directly leading immediately to patient benefit.

Dr. Diane Reidy-Lagunes:

Amen. And I do want to talk a little bit more about this oral medication versus IV, because so many of the therapies now that are FDA approved for cancer are oral.

Dr. Emeline Aviki:

Yeah. You can either get chemotherapy through an IV directly into your blood vessel, or you can get it through a pill. The use of oral pills is extremely convenient for patients. It's well tolerated. The issue is that they are reimbursed differently and that patients are charged differently. IV drugs, when you talk about Medicare, are always covered under the Part B benefit. So you need no supplemental coverage to cover infusion chemotherapy. Now, when you switch over to oral, it's different. If you have not purchased the additional Part D benefit, the prescription drug benefit, then these drugs are not covered at all. And so that $23,000 cost is then expected to be out-of-pocket for patients who do not have a specialty pharmacy or prescription drug benefit. Make sure you have specialty pharmacy coverage. And for Medicare patients, you have to make sure that you have that supplemental prescription drug coverage.

Dr. Diane Reidy-Lagunes:

Fumiko, I'd like to talk about when illness affects your ability to work, because you need the job to survive as you talked about, but most especially for the insurance. Here's Linda. Let's hear what she has to say.

Linda:

Hi, my name is Linda. I was diagnosed with breast cancer in February of 2019. Once I started chemo, I was that patient that anything that could go wrong, went wrong. I was in the emergency room seven times in six months. I had to stop working. I was getting leave of absence for a couple of months, but then it stopped. Once that stopped, there was no income coming in. I fell behind for four months on my rent. My truck was six months behind. There was no help. My sister had to pay all the bills in the house. She paid for the food. I had friends that tried to help me out but after a while, everybody was tired of having to ditch out money. For me, there is no program to help you, which they should. I wiped out my 401. I wiped out one of my pensions and still with all that, I'm still behind on all my bills. The disease doesn't only kill you, but it strips you of everything.

Dr. Fumiko Chino:

I can't tell you how much that story really hits to me personally. What I know from my own husband is that he really struggled through significant side effects to continue working because he realized that that was number one income. When you have only money going out and no money coming in, you fall into a big hole. So he was dogged in his persistence to continue working. He needed the health insurance to continue getting cancer treatment. We're in this sort of impossible situation for people who are working and who have cancer.

Dr. Diane Reidy-Lagunes:

So what should we be doing at a national level to really kind of push this critical issue?

Dr. Fumiko Chino:

I think in terms of policy changes, there are actually two bills right now active in the House and Senate. One of them is the Timely Access to Care Act, which is a bill specifically regarding the role of, for example, prior authorization. So an obstacle that health insurance can put up in between you and the cancer treatment that your physician recommends. And streamlining the process of prior authorization, making it more transparent, I think that could be a huge win for our patients. Another active bill is the Diverse Trials Act, and that bill actually allows trial sponsors to help offset the cost of participating in a clinical trial by, for example, helping pay for travel or gas or food when you're at a specialty center to get a clinical trial that allows people who would not otherwise be able to afford being on a clinical trial to have access to those potentially life-saving medications. We need support. We need people to write their congressmen. We need action from the individual, from the healthcare system, all the way up to the government.

Dr. Diane Reidy-Lagunes:

Absolutely. Emeline, we certainly need that support, but what can we as providers really do to change things, cause we're the ones ordering all these medications and these tests, etc. Is this something that we can do to address this?

Dr. Emeline Aviki:

Well, the simple answer is your doctor doesn't typically know how much your treatment will cost, or how much it's going to cost you or your insurance company. One thing that we can do as health systems and as providers is monitor the problem. Patients need routine objective monitoring for financial burden throughout their cancer care continuum. Secondly, this is a dream, pie in the sky, but really under-insurance should be criminal. It really should not be allowed. No one who has an insurance policy ever thinks that they're going to be bankrupted by their cancer treatment, but they are over and over and over again, and so we can't ignore it anymore. And over the next 10 years, I hope to see dramatic changes when it comes to patients suffering from financial burden.

Dr. Fumiko Chino:

We need to move more towards value-based practicing, and practicing high-value care and eliminating low-value care. That can be at a provider level. If there's a cheaper medication that's as effective, then maybe that should be our standard. As providers, we're just used to doing what we do, and it is not necessarily because it's better, it's just because we're familiar with it. And I would like to challenge everyone to really think about their standard practices and really consider what they're delivering to their patients. If something is more expensive, but it is better, is more effective, then yeah, it's worth it. But if it's just the same outcome and you could choose, you know, Drug A or choose Drug B, then maybe it's worthwhile thinking about, well, this could have a burden on the patient.

Dr. Diane Reidy-Lagunes:

Absolutely. I totally agree with you. Fumiko, any other resources that you know of that are available for our patients and their caregivers for help?

Dr. Fumiko Chino:

Absolutely. So there are resources available within every cancer center that are usually unique to that cancer center. However, they are also national resource programs. One of them is Cancer Care that can help provide some financial assistance for, for example, your light bill or your car payment. Family Reach is another national assistance program that can help provide not just some financial stop gaps, but also financial counseling that can actually help you kind of be better off financially after a cancer diagnosis. And then there's actually a national charity called Lazarex that actually can help offset the cost of you traveling for a clinical trial. And I was one of those people frantically searching ClinicalTrials.gov, looking for clinical trials that he could potentially enroll in. But you know, those barriers – the flights, the hotels – they're insurmountable for many, many families. And so these charities are working collectively within the entire US, but also within the individual cancer care centers to try to improve access to patients because finances should never be a barrier to you getting the optimal cancer treatment

Dr. Emeline Aviki:

Fumiko, one thing that you just reminded me of is the silver lining in the COVID pandemic is that it was a quick lesson where telemedicine can be used to really amplify convenience for patients – not needing to pay for parking, not needing to take off of work. It will likely reduce financial toxicity for patients. And so as a provider, it's something that, at any point in time, if it's an option, I recommend it for my patients.

Dr. Diane Reidy-Lagunes:

Fumiko Chino, radiation oncologist and Excellence in Equity Award winner, and Emeline Aviki, gynecologic surgeon and boss of the new Affordability Working Group, thank you both so much for being with us today and for all you're doing.

Dr. Fumiko Chino:

It was such a delight to speak with you.

Dr. Emeline Aviki:

It really was such an honor. Thanks for having us.

Dr. Diane Reidy-Lagunes:

And thank you for listening to Cancer Straight Talk from Memorial Sloan Kettering Cancer Center. For more information, or to send us any questions you may have, please visit us at mskcc.org/podcast. Help others find this helpful resource by rating or reviewing this podcast at Apple Podcasts or wherever you listen to your podcasts. These episodes are for you, but are not intended to be a medical substitute. Please remember to consult your doctor with any questions you have regarding any medical conditions. I'm Dr. Diane Reidy-Lagunes. Onward and upward.