Shereese Hickson's multiple sclerosis was flaring again. Spasms in her legs and other symptoms were getting worse.
She could still walk and take care of her son six years after doctors diagnosed the disease, which attacks the central nervous system. Earlier symptoms such as slurred speech and vision problems had resolved with treatment, but others lingered: She was tired and sometimes fell.
This summer, a doctor switched her to Ocrevus, a drug approved in 2017 that delayed progression of the disease in clinical trials better than an older medicine did.
Genentech, a South San Francisco, Calif.-based subsidiary of Swiss pharmaceutical giant Roche, makes Ocrevus. The drug is one of several for multiple sclerosis that are delivered intravenously in a hospital or clinic. Such medicines have become increasingly expensive, priced in many cases at well over $80,000 a year. Hospitals delivering the drugs often make money by charging a premium on top of their cost or adding hefty fees for the infusion clinic.
Hickson received her first two Ocrevus infusions as an outpatient two weeks apart in July and August. And then the bill came.
Patient: Shereese Hickson, 39, single mother who worked as a health aide and trained as a medical coder, living in Girard, Ohio. Because her MS has left her too disabled to work, she is now on Medicare; she also has Medicaid for backup.
Total bill: $123,019 for two Ocrevus infusions taken as an outpatient. CareSource, Hickson's Medicare managed care plan, paid a discounted $28,960. Hickson got a bill for about $3,620, the balance calculated as her share by the hospital after the insurance reimbursement.
Medical service: Two Ocrevus infusions, each requiring several hours at the hospital.
Service provider: Cleveland Clinic, a nonprofit, academic medical center based in Ohio. (Cleveland Clinic has provided financial support for NPR.)
What gives: Hickson researched Ocrevus online after her doctor prescribed the new medicine. "I've seen people's testimonies about how great it is" on YouTube, she said. "But I don't think they really go into what it's like receiving the bill."
That was particularly shocking because, covered by government insurance for her disability, she had never received a bill for MS medicine before.
"I have a 9-year-old son and my income is $770 a month," said Hickson. "How am I supposed to support him and then you guys are asking me for $3,000?"
Even in a world of soaring drug prices, multiple sclerosis medicines stand out. Over two decades ending in 2013, costs for MS medicines rose at annual rates five to seven times higher than those for prescription drugs generally, found a study by researchers at Oregon Health & Science University.
"There was no competition on price that was occurring," said Daniel Hartung, the OHSU and Oregon State University professor who led the study. "It appeared to be the opposite. As newer drugs were brought to market, it promoted increased escalation in drug prices."
With Ocrevus, Genentech did come up with a price that was slightly less than for rival drugs, but only after MS medicines were already extremely expensive. The drug launched last year at an annual list price of $65,000, about 25 percent lower than that of other MS drugs, Hartung said. MS drugs cost about $10,000 per year in the 1990s and about $30,000 a decade ago.
"We set the price of Ocrevus to reduce price as a barrier to treatment," said Genentech spokeswoman Amanda Fallon.
It was also probably a response to bad publicity about expensive MS drugs, Hartung said. "Now companies are very aware at least of the optics of releasing drugs at higher and higher prices," he said.
Patients starting Ocrevus get two initial infusions of 300 milligrams each and then 600 milligrams twice a year. Cleveland Clinic charged $117,089 for Hickson's first two doses of Ocrevus — more than three times what hospitals typically pay for the drug, said John Hennessy, chief business development officer at WellRithms, a firm that analyzes medical bills for self-insured employers.
As is typical of government programs such as Medicare, the $28,960 reimbursement ultimately collected by the Cleveland Clinic was far less — but still substantial.
"We kind of got ourselves in a pickle here," he said. "We're more excited about the discount than we are about the actual price."
Hickson's nearly $3,620 bill represented the portion that Medicare patients often are expected to pay themselves.
Last year, the Institute for Clinical and Economic Review, an independent nonprofit that evaluates medical treatments, completed a detailed study on MS medicines. It found that Ocrevus was one of three or four medicines that were most effective in reducing MS relapses and preventing MS from getting worse. But it also found that patient benefits from MS drugs "come at a high relative cost" to society.
At the same time, deciding which MS drug — there are about a dozen — would best suit patients is something of a shot in the dark: The science showing the comparative effectiveness of MS drugs is not as strong as it could be, researchers say.
"In general, there's a real lack of head-to-head studies for many of these drugs," said Hartung. The [Food and Drug Administration] has no required comparison standard for MS drugs, an agency spokeswoman said. Sometimes they're rated against placebos. With everyone able to charge a high price, the companies have little incentive to see which works better and which worse.
Resolution: After Hickson questioned the charges over the phone, the billing office told her to apply to the hospital for financial assistance. Hickson had to print a form, provide proof of her disabled status, mail it and wait.
Hospital officials told her in October she qualified for assistance based on her income through a state program funded by hospital contributions and federal money. Cleveland Clinic wiped out the $3,620 balance.
"I'm grateful that they approved me for that, but not everybody's situation is like that," she said. She was worried enough about being billed again for her next Ocrevus infusion that she considered switching back to her old medicine. But her doctor wants her to give it more time to gauge its effects.
The takeaway: Always ask about charity care or financial assistance programs. Hospitals have different policies and wide discretion about how to apply them, but they often do not even tell patients such programs exist.
Because health care costs can be so high, you may be eligible even if you have a decent salary. Cleveland Clinic gives free care to everybody below a certain income, said spokeswoman Heather Phillips. But it wasn't until Hickson called that the hospital agreed to erase the charge.
While there are multiple new drugs to treat serious chronic conditions, they have often not been tested against one another. Moreover, doctors may have no idea about their prices. But they should. For newer drugs, all options may well be very expensive.
Keep in mind that drugs that must be infused often come with facility fees and infusion charges, which can leave patients with hefty copayments for outpatient treatment. Ask about oral medicines or those you can self-inject at home.
NPR produced and edited the interview with Kaiser Health News' Elisabeth Rosenthal for broadcast. Marlene Harris-Taylor, from member station Ideastream in Cleveland, provided audio reporting.
Do you have an exorbitant or baffling medical bill that you'd like KHN and NPR to look into? You can tell us about it and submit a copy of the bill here.
KHN is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that isn't affiliated with Kaiser Permanente.
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. Transcript provided by NPR, Copyright NPR.