AUDIE CORNISH, HOST:
Every month, NPR and Kaiser Health News take a close look at medical bills that you send us. Today we hear about a woman whose medical bill for a drug to treat multiple sclerosis was so high that she considered asking her doctor to put her on other medication. Dr. Elisabeth Rosenthal is editor in chief of Kaiser Health News. She joins us now in the studio. Welcome.
ELISABETH ROSENTHAL: Thanks for having me.
CORNISH: So tell us a little bit more about this woman and her situation.
ROSENTHAL: Sure. This month we spoke with an Ohio woman named Shereese Hickson. She was diagnosed with MS, or multiple sclerosis, several years ago. And she's on disability now and can't work because of her disease. But she's able to take care of her son, and she's fairly active given her condition.
CORNISH: And we should note that MS attacks the central nervous system, right? So there are a bunch of symptoms that can come with that - fatigue, blindness, even the inability to walk.
ROSENTHAL: Yes, but the good news is that there are a bunch of new drugs over the last couple of decades which dramatically change the course of this disease. When I was a practicing doctor, many of the people with MS would end up in wheelchairs or in nursing homes. That doesn't happen today. So when Shereese was first diagnosed, she was severely disabled. And many of her symptoms resolved on some of these new medicines. But she had persistent fatigue, and she just was falling sometimes. So her doctor decided to try her on a new drug. And that's when this saga began.
CORNISH: Right. Reporter Marlene Harris-Taylor of Ideastream in Cleveland actually went to meet her.
MARLENE HARRIS-TAYLOR: Shereese Hickson is tenacious. The 39-year-old single mother had to fight her way back. She was nearly fully debilitated by the time a battery of tests confirmed she had multiple sclerosis. That was 2012, when her son Isaiah was 2 years old. Shereese says she had to get better for Isaiah.
SHEREESE HICKSON: I had to learn how to walk and basically do everything all over again. And I was home right before his third birthday.
HARRIS-TAYLOR: Shereese says she's now stable. She can't work, but she's able to take care of Isaiah, who is full of energy, like most 8-year-olds.
What grade are you in?
ISAIAH HICKSON: Third grade.
HARRIS-TAYLOR: At times, though, Shereese's fatigue is overwhelming.
HICKSON: I fight through it, but some days it's really difficult. And some days it's like I need to sit down because if I take one more step, I'm falling on my face.
HARRIS-TAYLOR: Her doctor at the Cleveland Clinic about an hour west of her home in Girard, Ohio suggested Shereese try a new medication to keep her MS from progressing.
HICKSON: We have Ocrevus, which is the infusion, and we would like to try this on you. And I was just like - I'm like, I don't want anything to do with needles.
HARRIS-TAYLOR: Shereese eventually agreed and received two Ocrevus infusions at the clinic. The drug is delivered through an IV drip like chemotherapy. After the second dose in September, Shereese was surprised when a bill arrived in the mail a few weeks later.
HICKSON: And I'm just like, what is this?
HARRIS-TAYLOR: Shereese is on disability and has both Medicare and Medicaid health insurance, so her medical bills are usually fully covered. But this time was different.
HICKSON: Total charges, $122,873.30.
HARRIS-TAYLOR: But as she continued to read the bill, Shereese realized she was not being asked to pay the full price. The hospital was, however, billing her for the copay.
HICKSON: Minimum balance due, $3,619.98.
HARRIS-TAYLOR: Shereese was confused. She thought it was a mistake, and she immediately called the hospital about the bill.
HICKSON: I can't pay this. I'm on a fixed income. I'm a single mom. And what you guys are asking me to pay is six months of my income.
HARRIS-TAYLOR: Cleveland Clinic eventually told Shereese she wouldn't have to pay because of her income. She's relieved. But her next appointment for another dose of Ocrevus is in January. She says it can take up to a year to know if Ocrevus is working. But Shereese is thinking of bailing and asking her doctor to find another drug.
HICKSON: It's unfair. It's very unfair. You're sick, and you have to now deal with another headache on top of being ill.
HARRIS-TAYLOR: Shereese says the whole ordeal was stressful, but she is lucky. She knows there are many who take the same drug who don't qualify for financial assistance. They get stuck with the outrageous bill, she says. For NPR News, I'm Marlene Harris-Taylor.
CORNISH: And we're back with Elisabeth Rosenthal, editor in chief of Kaiser Health News. Shereese Hickson's story raises a bunch of questions. First she was billed a few thousand dollars for a copay of her drug even though she had Medicaid and Medicare. Was that a mistake by the hospital?
ROSENTHAL: Well, apparently not because the hospital didn't say, oh, you know, Medicaid will cover this. They said, well, we'll write it off as charity care. And I think this is one thing people need to be aware of - that when you get an - infused drugs, the rules can - of your insurance can apply very differently.
CORNISH: Also, the full price of Hickson's two doses of this one drug was over a hundred thousand dollars. What explains that very high price?
ROSENTHAL: Well, MS drugs have followed this weird trajectory. It's called sticky pricing. And when each new drug comes into the market, the new drug is priced slightly higher than the old ones. And instead of all of them competing and lowering the price, they all go up to that higher ceiling, that sticky ceiling. So what we've seen over time is all of the MS drugs in the U.S. go up and up and up in price, double what they were a decade ago. In the rest of the world, they go down over time because there is some competition.
CORNISH: So what should people do if they are faced with a big copay like this for an expensive drug?
ROSENTHAL: Well, you can be like Shereese and pick up the phone and say, what's this about? Are there any other solutions for me - because all hospitals have what they call financial aid or charity care programs. You may think, oh, I make too much money to qualify. That's often not true.
The second thing to keep in mind and what her situation illustrates so well is if you get a drug by infusion, something you need to get in a clinic or a hospital, there are all sorts of ancillary charges that can make the bill far, far bigger. So if you have a choice of taking a drug as an infusion or one that you could give yourself at home either as a pill or as an injection at home, you're often much better off with the latter because you won't be subjected to these surprise bills.
CORNISH: That's Elizabeth Rosenthal, editor in chief of Kaiser Health News. Thank you for being here.
ROSENTHAL: Thanks for having me.
CORNISH: And if you have a medical bill you want us to investigate, head on over to NPR's Shots blog.
NPR transcripts are created on a rush deadline by Verb8tm, Inc., an NPR contractor, and produced using a proprietary transcription process developed with NPR. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.