It Shouldn’t be This Hard to Get Our MS Medications

I got a phone call from my MS One to One nurse, Lynn, a few days ago. One to One is the patient support service provided by Sanofi Genzyme for patients on the biotech company’s MS disease-modifying therapies (DMTs) Lemtrada (alemtuzumab) and Aubagio (teriflunomide). Lynn called to ensure that all of the paperwork was up-to-date and ready for my second round of Lemtrada infusions, which is scheduled to begin the second week of April. She told me that all of the insurance was approved and I’m good to go.

I’ve been very fortunate. I’ve never had a problem getting prompt approval of my medications, whether I was using commercial medical insurance or while on Medicare. Over the nearly 40 years since my MS diagnosis, I’ve been on four DMTs. I credit my neurologist and her top-notch staff for my smooth sailing.

But others haven’t been as lucky. A fellow MS patient, Jamie, who writes the Multiple Experiences blog had a horrible insurance experience right before her second round of Ocrevus (ocrelizumab) infusions. Here’s how Jamie describes it:

“I have no words. I’m so frustrated that the only thing I could do was cry. My insurance made some error and terminated me on one of their systems. I knew about this since last week and I had an escalated adjustment that was being done. I didn’t find out until yesterday they didn’t do it by accident when I called for something else. However the kicker is that the error that terminated me, terminated me in my authorization department. My Ocrevus infusion authorization is now voided. I found this out at 9am. My appointment was at 10:30. I’ve spent the last 2+ hours on the phone with the insurance and the infusion place, crying. Knowing it will all be fixed just let me get my medicine done but that hasn’t happened yet. It’s been another awful day trying to get this infusion done and I didn’t even get the actual infusion which still may have side effects. Now a snow storm is coming tomorrow in NY. I am just exhausted from all this.”

 And a short while later she wrote:

“Somehow, someway, we are on the way. IV line in but still waiting on medicine. Happy to say my veins cooperated on the second try. Now the pharmacy called hat they only had 300mg f the Ocrevus when the orders clearly say 600 mg. Now they are calling my doctor for clarification. Where the other 300mg is coming from, I don’t know.”


That second 300 mg didn’t arrive that day. So, Jamie had to receive her infusion in two steps. That’s the protocol for the first round of Ocrevus but not for the second. She finally received the second 300 mg infusion a week later.

It’s not just an insurance company problem

This kind of problem isn’t unique to any single medication, pharmaceutical company, or insurance provider. It frequently seems to be the doctor who’s at fault.

For example, a user on the Lemtrada for MS treatment Facebook group recently posted her frustration about how she’s been waiting for approval for Lemtrada since November. She complained that it’s because her doctor keeps dropping the ball, failing to contact the insurance company despite several requests.

Others quickly chimed in with similar experiences.

What ‘health care’ should mean

Health care involves more than just providing medical care to a patient. We, as patients, expect to receive care that includes the paperwork; care that includes coordinating with insurance companies in a fast and efficient manner. Doctors and medical facilities should treat this as an obligation. It’s too bad that too many don’t.

(This post first appeared as my column on the Multiple Sclerosis News Today website).