Serious DMTs Need Serious Care Coordination

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by Ed Tobias |

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Depression and MS

Ocrevus (ocrelizumab) is a serious disease-modifying therapy. It has the potential to deliver a major blow to a patient’s MS, but it also carries the possibility of severe side effects. The protocol for Ocrevus requires different doses on different infusion dates, following a specific treatment schedule. It’s also very expensive. This all shouts for the need for coordination of care!

Jamie’s coordination problems

I was concerned when Jamie, who writes the Multiple experienceS blog, began outlining her experience with Ocrevus last year. Jamie was excited about the benefits of the therapy, but before her first infusion last August, she had to overcome insurance approval problems. Then, when Jamie was finally headed for the infusion center, she wrote:

The appointment was called for 11 but as I’m walking out my door, I received a call that they still didn’t have the pre-medicine orders from my doctor.”

That first 300-mg Ocrevus infusion actually did happen that day, just a few hours late. But two weeks later, when it was time for a second 300-mg treatment, another postponement happened:

I can’t say whether the infusion site forgot to order the medicine for my appointment or if the drug company actually had a problem when they sent it, but my guess goes to the infusion site forgetting to order it in time.”

Six months later

At this treatment stage, Ocrevus changes to a single, 600-mg infusion. Guess what? Another delay. Jamie says she was first told the Ocrevus hadn’t been ordered. But a few days later, she posted this:

Turns out they never got authorization to get the drug or to administer it. … So now we had to go back through the infusion center to find out who is doing what!!!

The treatment was scheduled for a week later, but:

“Now the pharmacy called that they only had 300mg of the Ocrevus when the orders clearly say 600mg. Now they are calling my doctor for clarification. Where the other 300mg is coming from, I don’t know. … So I once again am doing a half dose of Ocrevus and in a week doing the second half because they didn’t have it.”

Have you had a care coordination problem with a therapy like Ocrevus or Lemtrada? Tell us your experience in our MS forums.

Six months after that

Here we are in September, and another treatment is due for Jamie. You’d think that by now, all of the kinks would be worked out and all of the bumps smoothed away. Nope:

I got a call that my medicine has been approved for 300mg. Ocrevus is 600mg. When I spoke to my insurance they said you were approved for 2 times. Once again that would be the initial dose infusion two weeks apart splitting the full dosage. When I flipped I was told by my insurance that we could order and administer both dosages together. My doctor said the same. When I spoke with the people doing the authorization from the infusion place this caused a lot of confusion. I’m still not sure if I am doing one or two infusions. After 40 phone calls back and forth I just want a date to get this done. I can’t continue with these people it is never a smooth occurrence.”

Working in treatment silos

This lack of coordination isn’t just an Ocrevus problem. Though Jamie’s problems are by far the worst I’ve heard, I’ve read similar tales of confusion from patients being treated with Lemtrada (alemtuzumab). It also has a complex treatment protocol. The similarity in all of these cases is that somewhere along the line, someone dropped the ball.

Sometimes the doctor’s office fails to file paperwork. Sometimes the insurance company is stubborn about approval. Often, the medical professionals at the infusion center aren’t clear on procedures. Sometimes a pharmaceutical company’s patient assistance RNs can help, but sometimes they appear powerless.

It’s as if every healthcare professional who is a part of these complex treatments is operating in a silo, leaving the poor patient making “40 phone calls,” like Jamie, to coordinate care.

Jamie finally received her September treatment. Six hundred milligrams of Ocrevus were infused at her home in the company of her TV, her dogs, and her comfy chair. But why couldn’t it have been that way from the start?

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Teresa Stein avatar

Teresa Stein

I feel for you and for all the difficulties you have had acquiring your medicine and in a timely manner.
Luckily it isn’t always that way. Mine went very smoothly thanks to the terrific staff at my doctors’ office. I don’t know if that will continue, as my first full infusion will be in December but I will check beforehand and hope that all goes well.
Best wishes from a fellow m.s. ‘r

Ed Tobias avatar

Ed Tobias

Hi Teresa,

I'm glad that your coordination has been going well and I hope it continues.

My care coordination is also great. It, too, is due to the super staff at my neuro's office (where the infusions are also done). That, of course, starts at the top with a great neuro, who cares about this sort of thing.

It looks as if things are improving for Jamie and I hope that continues.


itasara avatar


It always upsets me when I hear stories like Jamie‘s. That kind of office in Incompetence should never happen and yet it does. I hope Jamie’s MS going to be improved in the long run.

Karen avatar


Sorry to hear all the trouble you went through to get your infusions, but now that you’ve had them, do you feel the drug is helping you? I’m considering trying it but have a hard time finding information on its true effectiveness from first-hand experiences.

Ed Tobias avatar

Ed Tobias

Hi Karen,

I'm not the one who is on Ocrevus. It's Jamie, whose blog post I quoted. I'd suggest you click on the link in my column that takes you to her "Multiple experienceS" blog. She posted her latest Ocrevus update today.


Karen avatar


Thank you Ed, I will check out her blog. I find your columns are always very informative and helpful.


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