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Take on Today Podcast Episode 5

VJ Sleight, a two-time cancer survivor, and Peter Moore, author of “Broke From Cancer” from the AARP The Magazine, discuss the financial cost of a cancer diagnosis

Take on Today Podcast

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VJ Sleight, a two-time cancer survivor, and Peter Moore, author of “Broke From Cancer” from the AARP The Magazine, discuss the financial cost of a cancer diagnosis and tips on how to protect yourself and your loved ones.

Bob Edwards:

Hello. I’m Bob Edwards with An AARP Take On Today.

Peter Moore: Sometimes, it is the great unspoken saying when someone gets a cancer diagnosis is their worries about whether or not they can afford to live.

If you’re diagnosed with cancer, which expert should you see first: a medical specialist or a money manager?

Surprisingly, the latter might give you the best hope of surviving the disease with your health – and your wealth – intact.

VJ Sleight: So, it affects you in so many different ways and it also affects you financially.

Cancer has tried twice to defeat VJ Sleight, who shared her story with AARP The Magazine.

Both times Sleight had insurance – and despite her financial savvy – she went broke both times.

TRANSITION TO INTERVIEW

Bob Edwards:

VJ, when you got the first diagnosis of cancer where were you in life what was your situation?

VJ:

The first time I had cancer I was 32 years old it was 1987 and I was living in Orange County. I had just broken up with a boyfriend and I just quit my job.

But I hadn't had medical insurance, so I applied for insurance and once that was approved then I went to the doctor. And it turned out that I had breast cancer at age 32.

Bob Edwards:

What impact did it have on your life?

VJ:

It was a huge impact on my life.

I read an article once that it talked about cancer patients having three phases in their lives.

One is when you're going through treatment and actually that's a good phase because you're actively doing something. You focus on just the day-to-day aspect of having cancer. How do I get through today, you know? Do I have enough food in the refrigerator? Do I have clothes to wear? How do I make it to my doctor's appointment? How do I feel can I even get out of bed?

The second phase goes into once you're out of treatment. This is actually kind of worse because it affects you emotionally and mentally. Then a lot of people, and I had it, it's called scan anxiety.

Every time you go in for a blood work or a scan or something, or go to the doctor it's like is a shoe going to drop again?

Then you go into long-term survivorship. Where you think okay. It's over with. I never have to deal with this again. That's where I was 23 years later and I got cancer a second time. So, it affects you in so many different ways and it also affects you financially.

It's financially devastating especially for me. I'm a single woman. I've always been self-employed. I've always depended on myself for my income and everything.

When you're going through cancer treatment it's kind of hard to work. It's really tough.

Bob Edwards:

What about public assistance?

VJ:

You know I tried. When I was 32, I tried all forms of assistance and what I found out is you have to be really, really, really, really poor to get anything.

Bob Edwards:

But cancer was making you poor?

VJ:

Yes, it was.

Bob Edwards:

You sold your furniture?

VJ:

This was before the internet and, see, I put ads in the paper. I remember I'd sold one for my couch. I just sold odds and ends. So, when I moved that to the desert, I was literally starting over with nothing. I moved into a little studio apartment. I had my bed and a TV and, you know, I basically started over from scratch.

Bob Edwards:

You took handouts?

VJ:

I did. I'm sorry. I get emotional about this, but I did have people help me out. My car broke down and a girlfriend's mother paid to have my car fixed. My parents were financially able to send me some money each month. I ended up living with a girlfriend rent-free for a while. Yeah, I was basically one step away from living… being homeless while going through cancer treatments if it weren’t for family and friends.

Bob Edwards:

Sounds like cancer was becoming your full-time job?

VJ:

Well, the first time the treatment only it lasted less than a year. So yes, for a short period of time it is. Then after you get your treatment, you have to deal with trying to get your life back in order.

The first time, I had borrowed money from credit cards and everything and I had $35,000 of credit card debt. It took me seven years to pay it off. So, yes you live with the effects, even financially for a very long time.

Bob Edwards:

And, then the second whammy. You've got to think this just is not fair?

[Laughter]

VJ:

I was really angry the second time. I was called back. I had breast cancer, so they called me back because they saw a shadow on my mammogram. I thought no, they've got somebody who doesn't know how to read this. It's just old scar tissue. I'm just really pissed and angry. Then it's like, oh my goodness, they were right.

The second time though, it wasn't as devastating because… been there, done that.

So, I tried to keep life as normal as possible. I also sought out help from Gilda's Club, as part of the cancer support community, which was just an invaluable resource for me. I was so lucky to have a Gilda's Club here locally that I could go to. They provide emotional support for cancer patients and because I'd been through it the first time and I'd been through it alone.

Bob Edwards:

As costly as the treatment was the first time, those costs had risen dramatically the second time?

VJ:

Absolutely. You know, the first time through I added up how much, through insurance and everything, the first time I had cancer. With surgery, radiation and chemotherapy, it was only about $45,000.

The second time through, all I opted was for surgery and it was $125,000. So, I declined to go through chemo the second time. Partly for financial reasons and partly because I was 33 years old. I'm in my 60s now. Well, I was 55 when I was diagnosed a second time and it was like I don't know that I can handle this physically.

Bob Edwards:

What did your best day look like?

VJ:

Oh boy, the best day was probably at about five or first seven years after I'd had cancer.  I had fallen into a very deep depression afterwards. Even after it was over where I'm fat, I'm on medication, I'm broke, having all these issues. I was trying to find a therapist, but again my insurance didn't cover it. I didn't really have the money and I'm trying to get help for my issues.

I remember I went to this free clinic and I met this absolutely crazy therapist who, I can't even remember what she told me to do. I walked out of there thinking: she's so stupid, she knows nothing about me, she doesn't know what's going to take to make me happy.

I'm having a conversation with myself and it's like you know what: there's no one that knows what's going to make you happy except for yourself.

What is it going to… what's going to make you happy? And like that, my life changed. I started making decisions on what's going to make me happy today.

Bob Edwards:

Now, please tell me you're in remission?

VJ:

Well, yes. Yes and no. We don't say remission anymore. It's called N.E.D: no evidence of disease. Dancing with Ned. If you had cancer once, you even if they don’t know, even if they can't find it, you could still have cancer growing inside of you.

So, I no longer use the term remission because, I know I've had it twice, I'm going through physical issues now that very well could lead to another cancer diagnosis. So, just because they haven't found it.                                       

So, I don't like to use that word remission. It's more of an understanding with N.E.D., no evidence of disease at this time.

Bob Edwards:

VJ, thank you for sharing your story.

VJ:

Thank you for having me.

Bob Edwards:

Now I'd like to turn to Peter Moore, who included Vijay's story in his article, “Broke From Cancer,” in AARP The Magazine.

Bob Edwards:

Peter, is Vijay's story a common one?

Peter Moore:

It's unfortunately all too common. There are teams of researchers out there who are identifying a new phenomenon called “financial toxicity.” It was actually coined by a group at Duke University to talk about the constellation of stressors and other negative health effects that go along with people who get a cancer diagnosis and actually die because they cannot afford to follow their treatment. Sometimes, it is the great unspoken saying when someone gets a cancer diagnosis is their worries about whether or not they can afford to live.

Bob Edwards:

Even some patients thin out the dosage trying to make it last longer and that has of course negative effects.

Peter Moore:

Well it does. And one of the things that happens is they won't confess to their doctor, that that’s what they're doing. So, the doctor is left puzzled, because a hundred thousand dollar drug usually is very effective. But the patient is taking it every other day rather than every day. Making the drug less effective. They look at it saying, well at least I can afford the treatment now. But it's not enough of the drug titrating in their system to actually cure them.

Bob Edwards:

Why did you decide to share Vijay’s story? I mean you write for 38 million readers, why did they need to hear that story?

Peter Moore:

Well, you know, it is a phenomenon of people who are Vijay's age. Of course, she's an extraordinary human being in that she went through this twice and bankruptcy twice from it. She was fortunate enough to survive it.

However, many of the doctors and researchers I spoke with pointed out that as you age in life—and that gets us into the AARP demographic—your chances of coming down with cancer are greater and your chances of bankruptcy are also skyrocketing. It's such an expensive disease to cure and a lot of the drug companies are capitalizing on that. One of the facts, I mentioned in the story is that 11 of the 12 new cancer drugs that were approved by the FDA last year, cost in excess of a $100,000 for a year of treatment. Not a lot of us have that much money lying around.

Bob Edwards:

I learned there are price differences at pharmacies in the same city, even in the same block of the city?

Peter Moore:

That’s one of the things that people are just not aware of. If they don't bring up their concern right away about the costs of cancer care they may not get the help that they could get.

For instance, there’s an outfit called Cancer Cares—they are a charitable outfit that can help counsel you on finances, can help bring charitable organizations to support you. Also, many hospitals, especially the more enlightened ones, have social workers and financial navigators who understand the economic costs of cancer diagnosis and can help people deal with them. Find new strategies. Find charities that are willing to help them lessen the cost of their drugs.

The way I start off the article is… yes, you need a top-flight oncologist to work with you. However, you also need a financial counsellor to help guide you through this, so that you will have the resources to find the cure that you need.

Bob Edwards:

You include some tips in your article. What can you tell us about prescription discounts, charitable grants and coverage, life and travel expenses?

Peter Moore:

Organizations like Gilda's Club, which of course was funded by Gilda Radner and Friends when she got a cancer diagnosis, as well as Cancer Care. There are any number of charitable organizations that understand exactly what a threat a cancer diagnosis can be for a person. And they will help people line up the charitable organizations that can help them live with drug costs, life expenses. It becomes a moment when you have to swallow your pride the same time you're swallowing the prescription medicine and say, listen, I'm up against it. Cancer is very expensive to cure, so I'm going to marshal every resource that I can.

Bob Edwards:

Most people turn to a doctor or a nurse for help. In your article, you discuss the role of social workers. Tell us about that and how they can help?

Peter Moore:

A hospital and healing people should be looking for all aspects that will have an impact on your case. And financial stress clearly, with the concept of financial toxicity, is a major indicator of whether or not someone's going to get well or die from their cancer. Hospital social workers and financial navigators are people who are put in place in order to handle that aspect of care. If you can handle it on the medical front and on the financial front then you have a much better chance of surviving cancer.

Bob Edwards:

Peter, thank you.

Peter Moore:

Thank you.

[END OF INTERVIEW]

Bob Edwards:

Here’s what else you need to know this week.

In a recent age bias study, researchers responded to more than 13,000 online job postings in 12 cities with three résumés representing young, middle-aged and older age groups.

Even though all had similar skills, older candidates received far fewer callbacks.

Before the federal government banned age discrimination fifty years ago, it was common for help wanted ads to say, “Only workers under 35 need apply”

And today, some job listings now state a preference for “digital natives” — people who grew up using computers — deterring those over 40.

These approaches overlook the value of experience — a job qualification that takes years to build.

To learn how to age-proof your resume, go to AARP dot org slash Today Podcast.

[Transition]

It’s true, everybody has a dirty mind.

But that’s because the brain, our busiest organ, produces a lot of waste as it converts fuel into energy.

To stay healthy, the brain cleanses itself … and the mysteries of how it all works are still emerging.

One thing researchers do know is that a lot of that house cleaning occurs during sleep. And not the nap kind, but a full night’s shut eye.

One way to sleep well is to go to bed and wake up at the same time, even on weekends. And rest assured, you’ll wake up with a clean frame of mind.

For more information on the benefits of a good night’s rest, visit AARP dot org. 

Listen to The Perfect Scam Podcast and Nominate it for a People’s Choice Podcast Award in the News & Politics category by visiting Podcastawards.com.

Nominations close July 31 and nominees will be announced August 11.

For more, visit AARP dot org slash podcast.

Become a subscriber, and be sure to rate our podcast on Apple Podcasts, Google Play, Stitcher and other podcast apps.

Thanks for listening.  I’m Bob Edwards.

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