Cancer patients battle cost for treatment as well as disease

Published: May. 8, 2017 at 8:51 PM CDT
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More than once, while she's sat in a chair getting treatment for her breast cancer, Leah Liston has had the same thought: "If I could work a lot and my hands would let me, I would be very tempted to not get treatment for a while."

Leah isn't just tired of the chemotherapy racking her body; she says she can't afford it.

While we stood in a hospital room, looking at a mountain of hospital bills, I asked Leah how much debt she thinks she has racked up over her nine years of treatment. She told me her family is about $80,000 in the hole.

Leah's story started 10 years ago when she and her husband moved their family of four from Ohio to Kansas. Back then Leah knew she had a lump in her breast but she had always been told if it was cancer it would be small. The lump she felt was large but since it wasn't painful, she held off getting it checked out because money was tight. "My exact words were 'I don't wanna end up with a $5000 bill for a cyst.'"

She finally gave in and went to the emergency room when the pain became too great to bear. That was a Sunday. Leah was diagnosed with breast cancer by Monday afternoon.

"It was really shocking," said Leah, "because I was like 31 I think or maybe 32 at that point. We had had really no history of breast cancer in my family."

Leah's tumor was so large that she had to go through 6 months of chemotherapy to shrink it. Then she had surgery to remove the tumor and lymph nodes and then radiation to clear what couldn't be removed with surgery. For a year after all of that Leah went through more chemo to make sure the tumor didn't grow back.

A short time into her treatment Leah lost her job. She says that since she hadn't worked there for at least a year they were able to fire her without cause. That meant her husband's teacher salary was all the family had to support two adults and two young girls as well as the medical bills that never seemed to stop.

When Leah saw the first bill, panic set in. "There's never just one bill," she lamented, "you're getting 10-12 bills and they're all several thousand dollars and they all want 150 dollars a month payment at least. It's very overwhelming, it's sickening."

One bit of good news that Leah and her family got was that the treatment was working and she was in remission. For a couple of years she was able to go back to work and start making a dent in the debt they had accrued. By this point, Leah and her husband were $50 thousand in debt. They considered filing for bankruptcy, until their fate turned again.

"We were just about to and I was diagnosed a second time. So then it was like there's no point now, now we're starting all over again."

Unfortunately, Leah's case is not unusual. According to a 2012 study by the Kaiser Center for Health Research on a group of american cancer patients age 18 to 64, one third were put into debt because of cancer. More than half (of that number) had debt of 10 thousand dollars or more and three percent were bankrupted by their treatment costs.

For 36 years, Dr. Shaker Dakhil has treated cancer patients in Wichita. Working with the Cancer Center of Kansas he's seen first hand the rising cost of treatment and what it's doing to patients.

"It is happening day in and day out, it's a vicious cycle," said Dr. Dakhil. "You have insurance, as long as you're working, you get sick, you get fired or dismissed from your job, then you can't pay your premium."

The premium is the key part for Dr. Dakhil. When he sees a patient and writes up a treatment plan he has to work to get the drugs in the patient's hands. If patients cannot afford to pay their premiums, which can be exorbitant if they've lost their jobs and are on a COBRA plan, then his treatment plan is worthless because the cost of drugs is insurmountable without insurance.

"Oh it's insane! Used to be when I started, like an anti-hormone medication, costed $500 it was like oh my god how would anyone afford it? Now, the starting price of new drugs is 12 thousand, 14 thousand," explained Dr. Dakhil. But the problem goes even further: "Even if insurance pays 90%," he says, "that's still more than 1 thousand dollars a month for these patients. Almost every patient is going to have financial issues, there's not great insurance anymore."

Dr. Dakhil wasn't the only one who saw the problem. In 2004 a woman in Dr. Dakhil's practice started helping patients call insurance companies and foundations to get assistance instead of the patients doing it themselves and getting nowhere. Today, there are three full-time employees in the business office at the Cancer Center of Kansas. They make hundreds of calls per day to help cancer patients get approved for treatment, get free or discounted drugs and get any money they can from foundations to pay their unending bills."

Annie Hadsell has worked in the business office for more than a decade and is now the supervisor. She told me she doesn't see an end in sight when it comes to prices of drugs but does say there is a way people can help now: "I think the greater problem we are facing right now is the lack of funding. These foundations are running out of money quicker and quicker, so then we have to turn to the patient access support programs. All of this takes a lot of time and time is of the essence when you're dealing with patients with cancer."

Leah's case, though it sounds extreme, is not rare. She pays $370.73 a month for her COBRA premiums. That totals $4,448.76 for a year just to keep her insurance and minimize the cost of her treatments.

Speaking of that, the cost of Leah's treatment is mind-boggling and eye-popping. Just one treatment for Leah costs more than $19.5 thousand. Leah pays her deductible and hits her out of pocket maximum by February of each year. That payment is a little more than $6,450 meaning in one year Leah racks up a payment of nearly $11 thousand on chemo and premiums alone.

Don't forget, Leah has a husband and two daughters. They still have their own premiums to pay. Their family premium, including Leah's COBRA, is more than $700 a month. Again, that's just for general doctor's visits, it doesn't include things like optical or dental. Those are two luxuries Leah also can't afford.

When Leah went through radiation treatment for her breast cancer, she says it damaged her salivary glands. So her teeth are crumbling and that's not the worst part. Leah was embarrassed to tell me this but it's an important part of the story. "I've got like holes in my teeth but I can't go to the dentist until I pay them $300 some dollars. They wont do fillings til I get them paid off. A lot I've have to say never mind, and just take them out."

As you can imagine this is not an easy thing for Leah to talk about. Everything in her life is a hard decision, especially when it comes to her treatment which is more than just a life or death decision.

Leah told me she thinks if she stopped getting treatment for 6 months she could find a job and work enough to at least make some headway on the bills. Of course, her skills are limited because of the neuropathy she developed while getting chemo. Her hands don't grasp things well and she can't do much typing. The treatment for that illness is naturally a separate bill she pays.

Leah is willing to risk her life to go back to work because if there's one thing that overwhelms her more than the debt, it's the guilt. Having to tell her daughters that birthdays and Christmas won't be like that of other families because of her own illness, hurts Leah more than anything else.

But Leah reminded me that she has no choice but to try and look at the positive side of this situation. If she dwells too long on all the negative she says she'll get swallowed up by it. "There's always people who have less than you do and that's what I try to tell my kids and that's what they've always been raised with. There are plenty of people who wish they were in our situation. Even though we are going through a tough time there are people that would trade their life for ours in a second. We try to look at it that way."

Leah is currently receiving assistance from the Wichita Cancer Foundation to help pay her premiums each month so she can keep her insurance. That foundation was the brainchild of Dr. Dakhil and it's been in existence for 2 years. Last year, the foundation was able to help 58 patients and their families off set the cost of insurance premiums so they can get the life-saving treatment.

Beyond the foundation, the Cancer Center of Kansas donated $5 million worth of care in 2016.

If you would like to donate to the Wichita Cancer Foundation, you can go to their

.