Chronically Ill, Traumatically Billed: The $123,000 Medicine For MS


Shereese Hickson's multiple sclerosis was flaring again. Spasms in her own legs and other symptoms were getting worse.

She could still walk and look after 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 still fell.

This summer, a doctor switched her to Ocrevus, a drug approved in 2021 that delayed advancement of the condition in numerous studies better than a mature medicine did.

Genentech, a South San Francisco-based subsidiary of Swiss pharma giant Roche, makes Ocrevus. It is one of several drugs for ms delivered intravenously in a hospital or clinic. Such medicines have grown to be increasingly expensive like a group, priced in many cases at well over $80,000 a year. Hospitals delivering the drugs often take a cut by upcharging the drug or adding hefty fees for the infusion clinic.

Hickson received her first couple of Ocrevus infusions being an outpatient fourteen days apart in July and August. And then the bill came.

Patient: Shereese Hickson, 39, single mom who worked like a health aide and trained like a medical coder, living in Girard, Ohio. Because her MS leaves 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 reduced $28,960. Hickson had a bill for around $3,620, the total amount calculated as her share through the hospital after the insurance reimbursement.

Medical Service: Two Ocrevus infusions, each requiring several hours in the hospital.

Service Provider: Cleveland Clinic, a nonprofit, academic medical center in Ohio.

What Gives: Hickson researched Ocrevus online after her prescribed the new medicine. “I've seen people's testimonies about how great it's,” on YouTube, she said. “But I don't think they get into how it is like receiving the bill.”

That was particularly shocking because, included in government insurance for her disability, she'd never received a bill for MS medicine before.

“I possess a 9-year-old son and my income is $770 per month,” said Hickson. “How shall we be held supposed to support him and you guys are asking me for $3,000?”

Even inside a world of soaring drug prices, ms medicines stick out. Over two decades ending in 2021, costs for MS medicines rose at annual rates 5 to 7 times greater than those for prescription medications generally, found research by researchers at Oregon Health & Science University.

“There wasn't any competition in price which was occurring,” said Daniel Hartung, the OHSU and Oregon State University professor who led the research. “It appeared to be the opposite. As newer drugs were delivered to market, it promoted increased escalation in drug prices.”

With Ocrevus, Genentech did think of a price which was slightly less than for rival drugs, but only after MS medicines were already expensive. The drug launched this past year at an annual market price of $65,000, about 25 percent lower than those of other MS drugs, Hartung said. MS drugs cost about $10,000 each year in the 1990s and about $30,000 a decade ago.

“We set the price of Ocrevus to reduce price like a barrier to treatment,” said Genentech spokeswoman Amanda Fallon.

It was also probably an answer to bad publicity about expensive MS drugs, Hartung said. “Now information mill very aware a minimum of of the optics of releasing drugs at higher and better prices,” he said.

Patients starting Ocrevus get two initial infusions of 300 milligrams each and then 600 mg twice a year. Cleveland Clinic charged $117,089 for Hickson's first two doses of Ocrevus – a lot more than 3 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 presidency programs for example Medicare, the $28,960 reimbursement ultimately collected by the Cleveland Clinic was much less – but still substantial.

“We kind of got ourselves in a pickle here,” he said. “We're more looking forward to the discount than we're about the actual price.”

Hickson's nearly $3,620 bill represented the portion that Medicare patients often are expected to pay for themselves.

Shereese Hickson, diagnosed with multiple sclerosis this year and not able to work, supports herself and her son, Isaiah, on $770 a month.(Shane Wynn for KHN)

Last year, the Institute for Clinical and Economic Review, a completely independent nonprofit that evaluates treatments, completed an in depth study on MS medicines. It discovered that Ocrevus was 1 of 3 or four medicines which were most effective in reducing MS relapses and preventing MS from getting worse. But it also discovered 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 twelve – would be perfect for patients is something of the shot at nighttime: The science showing the comparative effectiveness of MS drugs isn't as strong as it could be, researchers say.

“In general, there is a real insufficient head-to-head studies for many of these drugs,” said Hartung. The FDA has no required comparison standard for MS drugs, an agency spokeswoman said. Sometimes they're rated against placebos. With everyone in a position to charge a high price, the businesses have little incentive to see which works more effectively and which worse.

Resolution: After Hickson questioned the charges over the phone, the billing office informed her to use to the hospital for financial assistance. Hickson needed to print an application, provide evidence of her disabled status, mail it and wait.

Hospital officials informed her in October she qualified for help based on her income through a state program funded by hospital contributions and federal money. Cleveland Clinic destroyed the $3,620 balance.

“I'm grateful they approved me for that, but not everybody's situation is like that,” she said. She was worried enough about being billed again on her next Ocrevus infusion that they considered switching to her old medicine. But her doctor wants her allow it additional time to gauge its effects.

The Takeaway: Always inquire about charity care or financial assistance programs. Hospitals have different policies and wide discretion about how to apply them, but often do not even tell patients such programs exist.

Because healthcare cost is so high, you might be eligible even though you have a decent salary. Cleveland Clinic gives free care to everybody below a certain income, said spokeswoman Heather Phillips. However it wasn't until Hickson called that the hospital agreed to erase the charge.

While you will find multiple new drugs to deal with serious chronic conditions, they've often not been tested against one another. Moreover, your physician may have no clue regarding their relative prices. She or he should. For newer drugs, all options may well be very expensive.

Keep in your mind that drugs which should 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 in your own home.