The negative impact of medical expenses on patients is known as financial toxicity. It’s one of the most universal and devastating side effects among cancer patients and their families, and it’s growing. Is there any hope on the horizon? In this episode, Dr. Diane Reidy-Lagunes gets answers and advice from two champions of this issue: Dr. Fumiko Chino, radiation oncologist and inaugural winner of the ASCO Excellence in Equity Award; and Dr. Emeline Aviki, gynecologic surgeon and former head of the Affordability Working Group. Dr. Chino and Dr. Aviki share tips for choosing the right insurance plan, oral versus IV treatment, planning ahead with your loved ones and resources for aid.
Cancer Straight Talk from MSK is a podcast that brings together patients and experts, to have straightforward evidence-based conversations. Memorial Sloan Kettering's Dr. Diane Reidy-Lagunes hosts, with a mission to educate and empower patients and their family members.
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Highlights
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 to file for bankruptcy, when compared to the general public. Are patients being forced to make decisions that may compromise their health?
Our best data suggests that those numbers are grossly under-reported. We’re underestimating the magnitude on an individual patient level where there's no routine screening for this, and on a societal level, where entire families and communities are financially affected by their loved ones' cancer treatment. Patients are having to make incredible sacrifices to afford their care. They’re skipping supportive medications. They're having to delay scans. They're putting off the diagnosis and treatment of mental health concerns. 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.
The United States pays more healthcare than any other nation. Who is to blame for that?
Starting with the insurance companies, deductibles have more than quadrupled since the early two-thousands, when the average patient annual deductible was $300. By 2020, it was over $1500 per patient annually. Out-of-pocket costs have increased by more than 15% since 2000. In the pharmaceutical industry, there is a soaring cost of cancer drugs. The average monthly cost of newly approved oral anti-cancer drugs in 2000 was $1,900. By 2015 it was over $11,000 and has continued to rise.
Any advice on trying to understand your insurance when you have a cancer diagnosis? How can I pick an insurance plan where I'll be protected or safe if I am diagnosed with cancer?
Sometimes the best way of navigating your health insurance is to speak to an expert. I feel blessed to be here at MSK because we have people who can help you understand your health insurance better.
Make sure your insurance coverage includes at least one NCI-designated cancer center that is in-network. In-network coverage means you'll be required to pay less for services that are administered by that facility and that you're less likely to require pre-approvals, which can delay your care. Also make sure your plan has 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 because they are where many patients have the greatest out-of-pocket expense. If you're covered under Medicare, purchase prescription drug coverage, or Part D, as soon as you enroll, so you will have benefits for oral anti-cancer drugs. If you delay enrollment, you'll pay a late enrollment penalty for the rest of time once you do enroll.
What advice do you have for patients newly diagnosed with cancer?
Understand what costs can be anticipated and think about worst-case and best-case scenarios in terms of your cancer path, which will help 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 knew what was coming. 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 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 you want, to know what you’re willing to put up with, and what’s too far. It's hard to have these conversations but they're important.
What can doctors and healthcare professionals do to help patients struggling financially?
It is critical for members of the healthcare team to advocate on behalf of patients, particularly when it comes to the financial burden affecting their cancer treatment. We founded the Affordability Working Group at MSK, which is a team 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. Your doctor doesn't typically know how much your treatment will cost. One thing that we can do though is monitor the problem. Patients need routine objective monitoring for financial burden throughout their cancer care. Secondly, under-insurance should be criminal. It really should not be allowed. That’s my dream. If there's a cheaper medication that's as effective, maybe that should be our standard. As providers, we're used to doing what we do because we're familiar with it, and I would like to challenge everyone to think about their standard practices and consider what they're delivering to their patients. If something is more expensive and it’s better, then yeah, it's worth it. But if it achieves the same outcome and it's cheaper, even if it’s new to you, it’s worth thinking about the burden on the patient.
What’s the difference between oral cancer pills versus IV treatment?
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 convenient for patients and 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. You need no supplemental coverage to cover infusion chemotherapy. When you switch over to oral, it's different. If you have not purchased the additional Part D benefit, the prescription drug benefit, these drugs are not covered at all. So that $23,000 cost is then expected to be out-of-pocket for patients who do not have specialty pharmacy coverage or prescription drug benefit. Make sure you have specialty pharmacy coverage. And for Medicare patients, make sure that you have supplemental prescription drug coverage.
What should we be doing on a national level to push this critical issue?
There are 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 prior authorization, which is an obstacle health insurance companies can put up in between you and the cancer treatment your physician recommends. Streamlining the process of prior authorization, making it more transparent, could be a huge win for our patients. Another active bill is the Diverse Trials Act, which would allow 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.
Are there any other resources that are available for patients and their caregivers for help?
There are usually resources available within every cancer center that are unique to that cancer center. There also national resource programs, such as Cancer Care, that can help provide some financial assistance for your utility bills, car payments, etc. Family Reach is another national assistance program that can provide not just some financial assistance as well as financial counseling. There’s a national charity called Lazarex that can help offset the cost of you traveling for a clinical trial. The silver lining of the COVID pandemic is that it was a quick lesson of using telemedicine to amplify convenience for patients – saving them travel costs, gas and parking costs, time off work. When it's an option, I recommend it for my patients.
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