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.
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."
"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.
"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.
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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