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

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


I got a phone call from my MS One to One nurse, Lynn, today. 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:
“Some how, 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 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.”

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.

You’re invited to visit my personal blog at


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Ed Tobias is a retired broadcast journalist. Most of his 40+ year career was spent as a manager with the Associated Press in Washington, DC. Tobias was diagnosed with Multiple Sclerosis in 1980 but he continued to work, full-time, meeting interesting people and traveling to interesting places, until retiring at the end of 2012.
Ed Tobias is a retired broadcast journalist. Most of his 40+ year career was spent as a manager with the Associated Press in Washington, DC. Tobias was diagnosed with Multiple Sclerosis in 1980 but he continued to work, full-time, meeting interesting people and traveling to interesting places, until retiring at the end of 2012.

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  1. I can remember at the beginning of my road it was very hard. I had to do allot of the so called leg work myself. It can be so depressing. Then after much a do, I moved to florida for reasons o Family. In doing so I got very lucky and found an Amazing Neurologist whom Specializes in M.S. I thank God every day to have found her. Therapy got so much better. Paper work they do. All I do is wait for re-enrollment for financial aid. Life getting those things done has gotten better. Now I have to adjust to not being able to walk and or use my legs. Drives me up a wall. I use to be so active. I then remember that others have a way worse time than myself.

  2. Belinda Love says:

    I have experienced the same drama with Medicare, other insurance companies, my neurologist’s office, the pharmacy……….You name it, I’ve had the problem. I had been on Tysabri infusions for 5 years. When the Ocrevus was approved by the FDA last year, my neurologist advised me to switch (since I had been JCV+ from the very beginning.) I have now completed the 8 week washout period, the necessary hepatitis screening bloodwork, the approval for financial aid from Genentech, dotted the i’s and crossed the t’s; STILL waiting a week later for the neurologist’s office to actually set up the infusion appt. SO FRUSTRATING!!!!!

  3. madchemist says:

    We are insured with Kaiser Permanente mid-Atlantic region and they ONLY cover Copaxone and two older meds! I would have to pay thousands a month out-of-pocket if my neurologist wanted to try a newer medication!!!!

    • Kiyan says:

      I’ve been left without insurance a few times myself, so I empathize with your plight.
      However, I found dealing with the company directly to be a positive step. Novartis provided the medication free of cost, until my government insurance began covering it some months down the road. I’m sure the fact that my neurologist was involved with the drug trial was helpful, but I don’t see why the same courtesy might not be extended to you.

      • steve says:

        Hello Kiyan,
        Where are you located? Are you in the U.S.?
        The reason I ask, is my daughter is having a problem getting her ms medicine refilled. And I was wondering if you have a phone number for Novartis.

  4. Deb says:

    I recently turned 65 & now have Medicare. It has been extremely frustrating getting my Copaxone. I can’t use the pharmacy I have always used & Medicare won’t pay for the generic. My co-pays are extremely high the first two months & then drop off to $343 per month for the next ten months. I’ve tried getting help from Novartis but they say I make too much money.

    • Ed Tobias says:

      Hi Deb,

      Yes, your problem is similar for many of us.

      When I went on Medicare I’d been using Aubagio. Since it’s a pill it had to be covered under Part D. The co-pay was very high and my “income,” even though much it comes from my IRA savings, was too high to get help. I wound up switching to an infusion. Because the treatment is received in my doctor’s office, 80% is covered by Medicare Part A or B and the remaining 20% is covered by my AARP supplemental insurance. Fortunately, I can afford the supplemental.

      Have you thought about speaking with your neurologist about changing drugs?

    • Ed Tobias says:

      Which Medicare plan do you have? If you’re using Part D to pay for your drugs is that 17k a co-pay? If so, for what drug? Drug companies frequently help pay for part, or all, or large co-pays. There are also foundations that will do that.

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