Ocrevus (ocrelizumab) is a serious disease-modifying therapy. It has the potential to deliver a major blow to a patient’s multiple sclerosis, 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 serious care coordination!
Jamie’s care 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, there was another postponement:
“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.”
Six months after that
This brings us to 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 care coordination isn’t just an Ocrevus problem. And it’s probably not just an MS problem, either. Though Jamie’s problems are by far the worst I’ve heard about, I’ve read similar tales of confusion from patients being treated with Lemtrada (alemtuzumab). That medication 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 many of the healthcare professionals who are a part of these complex treatments are operating in a silo, leaving their 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 there have been better care coordination from the start?
(This is an edited version of one of my columns on the Multiple Sclerosis News Today website).
Bravo for the advances in recognizing travel challenges for disabled individuals.
I use a scooter called SmartScoot which we gate check similar to a baby stroller.
The airlines have broken my battery holder, the horn and gear mechanism, lifted it from the handlebar (not the base despite my neon tape noting “lift here”)…I recently had one airport employee refuse to bring it up at the end of the flight because it was too heavy (it weighs 50 lbs including battery).!I never know what to expect.
I wonder also why disabled individuals must pay the airline seat surcharges to be closer to the front ..bulkhead or premium seating can average $45-60/flight (often adding $250 a trip) …even buses ask riders to leave those seats for those who need them!! Perhaps airlines will soon recognize this need and reserve a fixed number of aisle/ accessible seats each flight at no charge.
Thanks for the comments, Mary. As you may have read, I use a TravelScoot when I travel. It also folds like a baby stroller and it weights only 35 pounds, including the battery. The battery is lithium-ion and FAA regs require that it travel in the overhead compartment, so the scooter, itself, is really only about 25 pounds.
And, I’m really with you on the better seats with no charge. Once in a while I can move up to one of those without extra cost but I usually just pay the extra to be sure that I can be comfortable.
Ed
That was the best shortest version of the story. Now I don’t want to change because I heard I’m lucky I was able to get it done at home.