Medical Bills Linger, Long After Cancer Treatment Ends
Melinda Townsend-Breslin keeps a photo of herself on her refrigerator standing with her mother, MaryLou Townsend, in the front of the Unique Thrift Store in Louisville, Ky. They're side by side in the parking lot, both wearing white shirts and sporting short, practical haircuts.
Mom is proudly showing her discount card. "For the thrift store!" said Townsend-Breslin, laughing. "The discount for the thrift store!"
For Townsend-Breslin, this photo captures her mother: a frugal woman with a cheeky sense of humor, not prone to indulgences. When she was diagnosed with metastatic pancreatic cancer at 58, she approached her grim prognosis with the same pragmatism. She wanted to pursue treatment, but only if it was working.
The time between discovering a lesion on her pancreas and requiring surgery to remove it was just a few weeks, so when their family doctor recommended a noted surgeon, the family didn't hesitate to use his services. They knew he was out of their health plan's network of doctors, but at that stage, it was the least of their worries.
"Mom, don't worry about it," Townsend-Breslin recalled saying to her mother. "Worry about being sick, worry about the time that you that have left, don't worry about the darn bills."
Townsend had several complications after surgery and had to stay in the hospital for 30 days. Not long after, the family began receiving bills for that part of her care.
"There's not a lot of time to ask questions when they come and say we're going to do this surgery," Townsend-Breslin said. "We didn't have time to say, can you tell us how much the surgery is going to cost? How many surgeons are going to be involved? ... We had no clue of the bills that were on the other side."
According to the family, the bills ballooned to over $300,000 before their health insurance kicked in.
After MaryLou Townsend died, her husband, John, and their daughter were left with a large medical debt.
Until then, Townsend and her husband, John, had always been healthy. They rarely used the health insurance coverage that they received through his work as an automotive technician at a local car dealership.
When the bills started coming in the mail, they weren't always sure what they were responsible for paying, and what would be covered. Townsend feared they would go bankrupt or lose the house.
"She knew she was dying," her husband said. "And she was worried about paying the bills — me paying the bills after she was gone, on top of that."
They soon realized that their insurance coverage was true to its policy. It covered many of the charges, but it didn't fully cover their out-of-network surgeon or the full cost of all of the procedures. The familiy owed over $100,000, even with insurance.
"I always say, yes, $100,000 in debt is horrible," said Maggie Woods, director of the health and life division of the Kentucky Department of Insurance. "But half a million is much worse."
John and MaryLou celebrating their 36th wedding anniversary in 2011, before she was diagnosed with cancer.
"Unfortunately," she said, "Everyone thinks if it's insurance it's going to make you 100 percent whole. It's not the case."
The family regretted not looking at the policy more carefully and takes responsibility for that mistake. The family faults the health insurance company for its refusal to pay for a blood thinner that Townsend required.
She was suffering from blood clots and didn't respond to the standard drugs. She was in pain and only a blood thinner called Lovenox seemed to help. The drug cost around $1,000 a month and had to be paid out of pocket. Almost every month, the Townsends would have the same argument with their insurance company: The doctor said Lovenox was medically necessary; the insurance company wouldn't pay.
The family doesn't believe it was told that under the Affordable Care Act every state is required to have a formal appeals process, where patients can ask an external arbitrator to review a denial of payment. It's possible the Townsends received written notification of this process, they concede, but they don't recall that happening.
"I kind of think that's part of the doctor's job," Woods of the Kentucky insurance department said to Townsend-Breslin. "If they're going to be writing a prescription that's $1,200 or something like that, they have a responsibility in my opinion to give you all of your options to help you finance this health care for your mother."
Townsend's oncologist, Shawn Glisson, said that he knew about the appeals process. He said several members of his team spend their days negotiating access to drugs with insurance companies. In this case, the insurance company repeatedly refused to pay for what he deemed a medically necessary treatment, he said.
But he also doesn't think it is a doctor's responsibility to be involved in all the financial issues that arise during treatment beyond helping patients gain access to drugs at a reasonable cost.
Melinda Townsend-Breslin lost her mother to pancreatic cancer in 2014. The family is still coping with the bills.
"No one shares with me their 1040 and their economic balance sheet," he said, because his role as the oncologist is to treat cancer.
"People come see me because they want to live. And I don't have any control over the cost or what they signed up for or didn't sign up for or whether they have access to money or not."
Townsend-Breslin agreed. "No, that's not his job. His job was to treat Mom. His job was to focus on Mom and not focus on kind of the ancillary things that the family was focused on."
The prognosis for advanced pancreatic cancer is very poor, and Townsend's blood clotting persisted throughout treatment. When her initial response to chemotherapy showed limited improvement, she decided to stop treatment. She died on May 22, 2014.
Find other stories in the Living Cancer series at WNYC.org.
Since then, Townsend-Breslin has made it her part-time job to resolve her father's lingering financial issues. She works in the same hospital where her mother was treated and received assistance from two foundations affiliated with the hospital. She also negotiated and disputed various bills as best she could.
By earlier this month, she had successfully managed to reduce her father's medical debt down from $100,000 to less than $10,000.
Now, she and her father are learning to live without their beloved mother and wife. It has been bittersweet. A few months after Townsend died, Townsend-Breslin gave birth to the family's first grandchild, a healthy baby boy.
"I think MaryLou would've been really smitten with him," said her widower, as he smiled at his new 4-month-old grandson. "I think she would've had you spoiled, boy."
Our series is produced with member station WNYC and with Ken Burns Presents: Cancer: The Emperor of All Maladies, which will air on PBS starting March 30. Check your local listings for broadcast times.
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Transcript
ROBERT SIEGEL, HOST:
As we conclude our series Living Cancer, in partnership with member stations WNYC, we're considering a side effect of treatment that isn't physical but can take a toll. It's the financial burden. Paying for treatment can be prohibitively expensive, even with health insurance. WNYC's Amanda Aronczyk spoke with a family that struggled to manage both the care and the cost of cancer.
AMANDA ARONCZYK, BYLINE: There's a photo Melinda Townsend-Breslin keeps on her fridge of her and her mother. They're standing side by side in front of the Unique Thrift Store in Louisville, Ky.
MELINDA TOWNSEND-BRESLIN: Mom's holding up her thrift store customer loyalty card.
ARONCZYK: The loyalty card gets you 25 percent off.
TOWNSEND-BRESLIN: For the thrift store - the discount for the thrift store.
ARONCZYK: Her mother was a no-nonsense homemaker and her father, a mechanic. They were married for 37 years.
TOWNSEND-BRESLIN: They didn't have any money when they got married, so no fancy wedding rings. He made her a ring out of a penny that she wore forever. And on their 10th anniversary, he finally gave her a ring. He gave her the wedding band that I wear. It fits my ring finger perfect.
ARONCZYK: Do you miss her?
TOWNSEND-BRESLIN: Oh, God, yeah, every day.
ARONCZYK: MaryLou Townsend had pancreatic cancer and passed away last year. She was 59 years old. It was just eight months from diagnosis to death.
JOHN TOWNSEND: She knew she was dying, and she was worried about me paying the bills after she was gone.
ARONCZYK: John Townsend, her husband, says that they had health insurance, but neither of them had really been sick before. So they were shocked when the bills started to arrive.
TOWNSEND: That's all bills there.
ARONCZYK: You walk into their back room and there's a bookshelf filled with large binders.
Now, who is this organized? Like, who did this?
TOWNSEND: MaryLou.
ARONCZYK: She was an organized lady.
TOWNSEND: Oh, yeah.
ARONCZYK: Even when she was tired from her cancer treatment, she would still soar through the bills.
TOWNSEND: You know, she was afraid we was going to lose everything, lose the house, I was going to end up, after she was gone, you know, with nothing.
ARONCZYK: She worried all the time.
TOWNSEND-BRESLIN: I'm like, Mom, don't worry about it. Worry about being sick. Worry about the time that you have left. Don't worry about the darn bills.
ARONCZYK: When their regular doctor strongly suggested a surgeon who could operate within a week, they didn't worry about the fact that he wasn't in their network.
TOWNSEND-BRESLIN: We didn't have time to say, well, can you tell us how much the surgery is going to cost? How many surgeons are going to be involved? Do we have a choice of anesthesiologists? How much do you charge? It was, you need to have the surgery. We need to have it right now. We had no clue of the bills that were on the other side that we're waiting for that.
ARONCZYK: This was their biggest expense. They calculated that it was over $300,000 for the surgery and post-surgery care. Their health insurance covered many expenses, but they personally owed over $100,000 for eight months of treatment.
TOWNSEND: I still think we've got good insurance.
ARONCZYK: John Townsend does not fault his health insurance company for the bills from the surgery. But what was exasperating was their refusal to pay for a blood thinner drug his wife needed called Lovenox. Every month they'd have the same fight - doctor says it's necessary, insurance company won't pay.
TOWNSEND: And there again, they didn't want to pay nothing. It was like starting from scratch again every month. I mean, you know, the doctor was saying she needs this.
ARONCZYK: So was there anything they could have done to keep the medical bills from soaring out of control? To help figure that out, I set up a conference call with Maggie Woods at the Kentucky Department of Insurance.
Maggie Woods, are you there, too?
MAGGIE WOODS: Hi, ladies.
ARONCZYK: When someone has a complaint with their health insurance, it goes to this department.
WOODS: So what we do is when, you know, the insurance company says, no, we won't pay for Lovenox, we'll pay for drug X...
ARONCZYK: She explained to Melissa Townsend-Breslin that you go back and forth with your insurance company, and finally they say, no, we won't pay for drug X. At this point, you can appeal. This starts a process that goes beyond the individual's insurance company.
WOODS: Eventually it gets to the Department of Insurance. It gets to us here and, you know, you would be the textbook case for an appeal.
TOWNSEND-BRESLIN: Well, if I had a time machine and could go back over nine months, that would be amazing.
ARONCZYK: Up until this moment, the family did not know that they could've appealed. The doctor didn't mention it.
TOWNSEND-BRESLIN: He never suggested the appeals process.
WOODS: I kind of think that that's part of the doctor's job. If they're going to be writing a prescription that's $1,200 or something like that, they have a responsibility, in my opinion, to give you all your options. So I'm surprised and, you know, I hate that for you.
ARONCZYK: Their doctor at the Norton Cancer Institute was Dr. Sean Gleason. He knows that getting cancer drugs paid for can be infuriating.
SEAN GLEASON: It is a nightmare for just about everybody that I deal with. Since I hear about it nearly every day, I didn't really focus on the Townsend case. I have people that try to take care of all that.
ARONCZYK: Gleason says he wrote several memos to explain that the drug was medically necessary. He didn't understand why the insurance company kept refusing to pay for it. But an appeal - that's on the patient.
ARONCZYK: Do you know how much they owe?
GLEASON: No, I have no idea.
ARONCZYK: They owe $100,000.
GLEASON: That doesn't surprise me.
ARONCZYK: That doesn't surprise you?
GLEASON: No.
ARONCZYK: Do you hear that frequently?
GLEASON: Yes.
ARONCZYK: That's - it's so - that's the part that's shock.
GLEASON: Oh, really?
ARONCZYK: I was shocked. He was not. He thinks it's a systemic problem though. It's not about any one doctor. But if you're dealing with a patient with terminal cancer and the treatment is expensive, should the doctor be the one to say enough?
GLEASON: I never say that. Families do that all the time.
ARONCZYK: Should you say that?
GLEASON: I don't know what they - there's eight or 900. No one shares with me their 1040 and their economic balance sheet.
ARONCZYK: MaryLou Townsend decided when to stop her own cancer treatment. She was exhausted and she knew the prognosis was poor. Her doctor thought she made the decision to terminate treatment too soon.
GLEASON: I see it happen all the time. When someone becomes too much of a financial burden, they either, you know, self-terminate it or their family does. I see that happen. And that's what happened here.
ARONCZYK: And what's your role supposed to be in that?
GLEASON: Well, I tell them what they should be taking to live. People come see me because they want to live. I don't have any control over the cost or what they signed up for or didn't sign up for or whether they have access to money or not.
ARONCZYK: Melinda Breslin-Townsend agreed.
TOWNSEND-BRESLIN: No, that's not his job. His job was to treat Mom. His job was to focus on Mom and not focus on kind of the - I would almost say the ancillary things that the family was focused on.
ARONCZYK: They loved their doctor and thought the treatment was excellent. But then who should have protected the Townsends from the debt for this excellent treatment? The insurance company? The hospital? Anybody? It fell to the daughter. She's spent the last six months digging her father out of his debt, one phone call at a time.
(SOUNDBITE OF PHONE RINGING)
TOWNSEND-BRESLIN: Hi, my name's Melinda Townsend and I'm actually calling on behalf of my father, John Townsend. I'm hoping you can help me out today.
ARONCZYK: She makes these calls so frequently now she considers it a part-time job. She fought many charges. She negotiated. She applied for help from two foundations at the hospital. When I last saw her, she said she had whittled the debt down to less than $10,000, and she's still working on it.
TOWNSEND-BRESLIN: I've talked with the wonderful people at the insurance company. We're getting money.
ARONCZYK: It no longer seems like John Townsend will lose the house, but that is small comfort. The house feels empty without his wife.
TOWNSEND: You know, you've been married 37 years and I'd known her all my life almost. It's hard to lose someone.
ARONCZYK: You've got someone who showed up.
TOWNSEND: Yeah, that - I tell you, that has - that's helped a whole lot.
ARONCZYK: A few months after his wife passed away, his daughter, Melinda Townsend-Breslin, had a baby boy.
TOWNSEND: Yeah, I think MaryLou would have been smitten with him.
TOWNSEND-BRESLIN: I think so.
TOWNSEND: I think she'd have you spoiled, boy.
ARONCZYK: For NPR News, I'm Amanda Aronczyk in Louisville, Ky.
SIEGEL: Our series was produced with WNYC and with "Ken Burns Presents Cancer: The Emperor Of All Maladies," which will air on PBS stations starting next week. Transcript provided by NPR, Copyright NPR.
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