Cancer Costs Are Stressing Me Out: How Do I Cope?

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Topics include: Financial and Insurance

Many patients face significant challenges from dealing with the day-to-day financial responsibilities of cancer treatment, even when they have insurance. Who can patients talk to about navigating financial resources? Psychologist and ovarian cancer survivor Nancy Novack from NancysList.org explains how cancer patients can connect with resources and cope with financial toxicity, and gives guidelines to help understand and manage the high costs of cancer care. Watch now to learn more about getting financial help on your cancer treatment journey.

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:

Hello and welcome to Patient Power.  I'm Andrew Schorr in Carlsbad, California, living with two cancers, two blood cancers, and of course we're always focused on treatments and research, but what about the financial issues?  

So we're joined by Nancy Novack who is a psychologist but also an ovarian cancer survivor since 2004.  Nancy joins us from Austin, Texas.  Welcome to Patient Power, Nancy.  

Nancy Novack:

Thank you. 

Andrew Schorr:

So, Nancy, 2004, ovarian cancer.  It's 2018. Physically, how are you doing?   

Nancy Novack:

I'm doing great. I'm doing great.  I don't take any meds.  I've never had a recurrence.  I had stage IV.  It was mostly in my liver, which made it pretty, pretty challenging, but I went to is Stanford for treatment, and I feel extraordinarily grateful for my life.  

Andrew Schorr:

Well, amen. And we celebrate every day.  But the financial road can be hard.  I know you had your own experience with that and you have experience with so many other people who have talked about it. That's part of your devotion. Tell us about this whole issue of I think what can be called financial toxicity or in some cases lose your house because you have cancer.  

Nancy Novack:

So many people have asked me why I made it when others with ovarian cancer did not, and I really thought about that a lot.  And I think one of the issues that gets very much in the way is this desperation of, well, can I forward to have cancer?  And most people, most patients and their loved ones are not educated to find out where they can have access to the financial associations that can assist them in getting through this process.  So that's my commitment.  

Andrew Schorr:

Right.  And you started Nancy's List, and we should explain to people there's lots of information on Nancy's site related to financial resources she knows about partnered with articles from people who are expert in this.  And we have a survey now on Patient Power where the initial results show about 40 percent of the people have had significant effect financially because of their cancer care.  Ten percent more have had a dramatic effect.  And so in some cases that's people cutting pills, and there may be people watching, oral medicines now can be very expensive, or foregoing certain care or tests, because they just don't know how to afford it.  You have to choose between food and medicine, right? 

Nancy Novack:

Exactly. And it gets to be that dismal. That's really what they're dealing with. 

Andrew Schorr:

So is there help out there, Nancy?  So you can have somebody ask questions, but are there resources?  And help us understand them.  

Nancy Novack:

All right. Well, can I just do a little punch here? When I started Nancy's List, which was in 2006, it was actually my love letter to the universe for my recovery from stage IV.  And someone made this line that I think really says it.  Politicians have Emily's List, homemakers have Angie's List, everyone else has Craig's List, and now the cancer community has Nancy's List.  

And I took that really well, and I'm trying to develop the most comprehensive listing of where the money is, where the financial resources are all across the country. And from living expenses, from cleaning house expenses, from child care, from the quality of life concerns, retreats, camps for kids, scholarships for college students, the money is out there. We just have to tap into it, and we have to educate our cancer community about where to go.  

Andrew Schorr:

Should one of their questions be, do you have a financial navigator here who I could talk to, and then hopefully they do?  Then say what resources do you know about or what other resources should we look at together?  The meds, Patient Advocate Foundation, free drug program from Pfizer or whoever, right? Go down that road.  

Nancy Novack:

As you and I both have experienced, cancer is really challenging in that we do not want our cancer patients to be alone, that feeling that nobody's out there to help me. And if they have a team, a financial navigator from the hospital or support person on their team, there's a feeling of minimizing the amount of stress that they are dealing with, and they have enough stress without this piece of it. 

Andrew Schorr:

I just want to make a point, is we're getting into the age with a lot of cancers where there are oral medicines, and there are infused medicines that there have been traditionally.  The oral medicines are not paid for in the same way by insurance and can have significant co?pays where depending upon your insurance getting something at the clinic, whether it's an shot or an infusion, may be paid for, with a different medical benefit might be paid for at a higher rate.  

So sometimes the question is, the doctor says, well, you can take this really cool new pill. You need to understand how insurance will cover that for you versus maybe some equally effective treatment that might be infused.  Might not be as convenient, but it might be a tremendous difference, right?  So you have to navigate the processes as well, right? 

Nancy Novack:

A few drugs that are coming out, and there are a lot of them, really high cost.  They're covering the research and development, so some of these things are effective and maybe not.  But I know when I had the expensive Neupogen shots I never even asked, how much is this?  Will my—you know, you're desperate, you want to get well.  

Andrew Schorr:

Let's wrap up a couple things.  Let me tick things off to see if you agree.  So first of all, Nancy's List is a resource, and you've brought together a lot of information based on your own experience and wanting to give back, and thank you for that, Nancy.  Delegate somebody in your support world if you can or recruit somebody who can ask questions about the financial impact of your care on day one.  Maybe before you start treatment, at the time of diagnosis, right?  

Nancy Novack:

Right. Right.

Andrew Schorr:

And then also recognize that there are resources out there, but you need help in getting to them.  And you said that could even be in cleaning your house or transportation.  

Nancy Novack:

There’s a company called Cleaning for a Reason who cleans your house for free if you're a cancer patient.  Does anyone know that?  You and I know.  

Andrew Schorr:

I didn't know that.  

Nancy Novack:

It's a fabulous thing.  

Andrew Schorr:

And that you don't have to be broke starting out to ask for assistance.  

Nancy Novack:

Not at all. In fact what NeedyMeds has informed me, they said, tell your people.  Don't pay attention to the criteria.  Come to us anyway.  You know, there are ways to get you these medications.  They're not concerned about how much money you have in the bank. They're concerned more about disseminating the information, disseminating the medications that they have on hand.  

Andrew Schorr:

Okay.  And one word about that, clinical trials I'll mention.  We often on Patient Power talk about clinical trials.  And so if let's say you didn't live near Stanford, you used to, and there was a trial that was right for you, you might choose to go there, but you have travel and lodging and many other things that may go with it.  

Nancy Novack:

There are so—I probably have on anything a dozen different angels who fly people there, who need to go to a specialized hospital for their care or a clinical trial.  They will fly you.  It doesn't mean you have to have money to even ask for that. There's that.  There are also a great deal of different lodgings in different parts of the country.  ACS, the American Cancer, has the Hope Lodges so that people can be there, and especially it's great for when parents want to be with their child through some of the pediatric cancer.  They can stay at these Hope Lodges.  Or Ronald McDonald has lodges for them.  So this is all information that—you know, people don't even want to sign up for clinical trials because they think they're going to cost too much.  

Andrew Schorr:

Right. Right.  And we have unfortunately a low percentage of Americans who are in trials, yet that could be your hope for the future.  Having been in a Phase II trial, I'm here because of it.  It doesn't always work that way, but it's something you want to investigate.  Finances shouldn't be the barrier.  

Nancy, thank you so much for joining us from Austin, Texas, and we're so glad for the work you do and your continued good health.  Thanks for being with us.  

Nancy Novack:

Thank you so much.  

Andrew Schorr:

I'm Andrew Schorr at Patient Power and just delighted we can have these discussions about the financial side of cancer care which is so important now as they're developing, not for all cancers but for many, better therapies, but they're often expensive.  How do you get what's right for you so you can live longer and live better? Remember, knowledge can be the best medicine of all.  

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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Page last updated on April 24, 2019