My thrilling journey: What I had to do to finally get on a new MS medication

This is what three bottles of the drug look like when they are lined up next to each other I guess

I’ve now had multiple sclerosis for almost ten years—that’s crazy! During that time, I’ve been on three drugs:

1. Rebif. I was on this for about a year. I had to give myself three shots a week, which I did not enjoy because the only spot it didn’t hurt to do it on was my butt, and I was NOT ALLOWED to only do it there.

This was the spot where the drugs hurt the least

Instead, I had to cycle between there and my arm (third most painful), stomach (by far most painful), and leg (second most painful). Even worse, follow-up MRIs showed that Rebif didn’t really cut down on my lesions all that much, and—ALSO—it gave me flu-like symptoms for 5–10 hours following each dose.

The only real positive of this drug was that each month I got an insane shipment of all the vials in a huge styrofoam igloo filled with, like, three pounds of ice packs, and this made me feel important and cool.

2. Gilenya. I was on this one from 2010–2017 (or until yesterday, really). It was initially very exciting to go on Gilenya because, at the time, it was the first-ever oral MS drug, which meant I would no longer have to cycle between my butt, arm, stomach, and legs ever again (except in private life), and could instead just take a small pill every night.

When I started Gilenya, the company was still being very cautious about possible side effects, and I had to be observed for 24 hours in the hospital after my starting dose so they could make sure I wasn’t one of the patients whose heart slows way down after they take it. This was pretty exciting too, because I got all the attention of being in the hospital but did not actually feel sick. The dream.

3. Ocrevus. This is the big one, my white whale, the one I’ve been researching for nearly a year, eyeing since it became FDA-approved last spring, and seriously pursuing for almost six months. News outlets and even aspiring YouTube stars have raved about it, with some sites latching onto the idea that it is almost a “cure” for MS (it’s not, but it’s as close as any treatment’s been so far!).

So how did I do it? It took forever and was very frustrating. Here’s a timeline outlining the various hoops and hurdles I had to jump through and some notes and highlights from that time.

JUNE: In late May/early June 2017, it became clear that I was having a new MS flareup and that it was perhaps time to look into different MS drugs, as I’d now had 4 relapses in about 2 years, which isn’t great.

This particular one affected the sensation and dexterity of my right hand/fingers and arm, which concerned me, since my first relapse nearly ten years prior had done the same thing, but to my left hand! That one had led to permanent damage which still annoys me to this day, so I sprang into action pretty quick to try to stop this new one.

• For treatment, I was given IV and oral steroids. This always feels a little naughty to me because I still by default think of steroids as being what tarnishes the legacy of baseball players, and I’m always anxious about ruining my chances at the Hall.

The part of the film that nearly made me cry

• Usually I don’t really have any side effects from steroids, but this time when I was right toward the end of my prednisone course I got unexpectedly emotional and dangerously close to crying while watching the film The Sixth Sense in a room full of friends. It was a big relief to narrowly dodge this bullet, especially because the movie is really not that sad and I can safely say that no one else was EVEN CLOSE to tears.

JULY: Though I knew exactly which steps I wanted to take, I could not move any closer to getting new meds this month because I no longer had insurance, as I had both just quit my job and, a month earlier, turned 26 (and so was now off both my employer’s and mother’s insurance plans).

However, I had zeroed in on either Ocrevus or a different new drug called Lemtrada (which works in much the same way but might have more taxing side effects both short- and long-term) and intended to determine as soon as I possibly could whether I would be a good candidate for either. Given the seeming now-ineffectiveness of Gilenya and the amount of time I’ve had MS, I figured I would be.

Since I didn’t want to accumulate any out-of-pocket medical expenses during this month, however, I had to lay low and stay out of harm’s way.

• jk my wife Bethanie and I went to Hawaii for our late honeymoon and engaged in a bunch of moderately dangerous activities with impunity. Luckily the worst thing that happened was that I got super sunburned on the back of my white, meaty thighs following an afternoon of surfing. It hurt!
• We also did this knockoff SCUBA thing called SNUBA which was really fun even though I totally had a panic attack during our session and was almost exclusively thinking about how soon it would be over the entire time. I also lost the underwater disposable camera Bethanie bought for $20, and even though she wasn’t outwardly upset at me it was a shame I had to carry around for the rest of the day and trip.

FIRST HALF OF AUGUST: At the very beginning of the month we moved from Chico, CA down to Los Angeles so that I could start law school at UCLA. Before school started, though, my first priority was getting established with an L.A. neurologist, because to get on a new medicine I knew I’d likely have to at minimum have a neurologist order me a new MRI and some bloodwork.

• I wasn’t able to actually get on school health insurance until the 14th (the first day of classes), but I figured I could get a jump on everything and set myself up behind the scenes with a nearby neurology clinic prior to that—that way, I could have an appointment ASAP once I actually was covered. Get all my ducks in a row, if you will.

The way I had planned to organize the ducks

• This turned out to not be possible. To get in at a neurology clinic you have to first be referred by a local primary care doctor (no ifs, ands, or buts apparently), and I’d have to wait until I was actually covered by insurance to get started on getting that referral. Until then, they couldn’t even CONSIDER taking me on as a new patient, and it was INSANE to even ask, is the impression I got.
• I ran out of my old MS medicine, Gilenya, right around this time, with no way to pay for any more. Uh-oh!

SECOND HALF OF AUGUST: The morning of the 14th, I scheduled an appointment with the student health center with the goal of getting the required referral.

• Somehow, my pre-assigned student doctor was on furlough (?), so I didn’t have anyone to see.
• The school scheduling department was able to squeeze me in with a different doctor later in the week, and when they found a way to do this, they acted like they were doing me a huge, practically unprecedented favor.
• Thankfully, my temporary doctor was cool and recognized my predicament, and—despite having no knowledge of MS or the medication —prescribed me the OLD medicine (Gilenya) to tide me over until I could potentially get the NEW type from a neurologist.
• She also wrote a referral for me to the UCLA Medical Center Neurology Clinic, supposedly a good one on the national level. Maybe too good, though, as there was a big backlog of appointments and it would be nearly two months until they could actually see me. Not great, but fine.

SEPTEMBER: About a week after supposedly being prescribed the old tide-over med, I was told it had been denied by the insurance for unknown reasons and that I would be unable to get it, even though I had been taking it with no problems for seven years. I had now been without it for about a whole month, which is generally viewed as “bad.”

• Because my assigned student doctor was STILL on furlough (??), the student health center got me an appointment with yet another (new) temporary doctor, who again was cool but who turned out to be unable to even access the documents explaining WHY the medicine had been denied, as she, again, was not my primary doctor and thus did not have access to my full record. This was a frustrating position to be in, and if I had watched the Sixth Sense again right then and there I might have burst.
• Luckily, a very helpful nurse saw my pain, took me into a back room, and called the insurance company on speakerphone, brute forcing his way into an explanation. Eventually, he figured out I had been denied because the initial prescription written by the first temporary doctor hadn’t specified what kind of MS I had. Once we told them (relapsing-remitting), they immediately approved it. Hooray! I’d get my medicine in a few days.
• Seeing, however, that the SHC overall was a little out of their depth on this and that it was leading to unnecessary screwups leaving me unmedicated, my second temporary doctor wrote me an “emergency” referral to get seen at the actual neuro clinic before the two months were up and my actual appointment rolled around.
• I got a phone call and was given a 7 AM appointment two days later, and by 9 AM that day I was officially a patient in the system, with an MRI and followup appointment scheduled for October.
• To evaluate my disease progression (for new med purposes) in light of the upcoming MRI, my neuro also needed to view previous scans to see how my condition had changed over time. Through the years I have had about 10 MRIs (usually once per year), with my most recent scan having been at Rush University Medical Center in Chicago in fall 2015.
• To get those Rush scans into UCLA’s system, I’d have to take a bunch of unnecessarily-complicated steps (one of which involved sending a fax(!)) to request to release my records (on CD(!), sent by mail(!)) to UCLA. This whole process was one of the things I had wanted to take care of before—back when I was still IGNORANTLY trying to get my ducks in a row—but which I had found was not possible to do until I was actually a neurology patient somewhere.
• Anyway, about two weeks later I received confirmation from the records department at Rush that they had sent out the records.

The first email I received

• Though the communication was a bit troubling spelling-wise, I was confident everything was taken care of by the end of it.

The email I received after a phone conversation

OCTOBER: On 10/7/2017, I got an MRI of my brain and cervical spine at the UCLA Medical Center in Santa Monica, the SAME HOSPITAL WHERE TOM PETTY HAD DIED ONLY DAYS PRIOR. There were even still flowers out front.

RIP

• A few days later, my MRI report appeared in my online patient records portal, and it honestly did not look so good even to my inexpert layman eyes. Though I have zero familiarity with either radiology jargon or highly-technical medical terminology relating to my brain and spinal cord, it was clear that this MRI had (1) more lesions; and (2) more active lesions than any of my previous ones ever had by a fairly high margin; plus (3) something called T1-hypointense (or “black hole” (!)) lesions, which are a hallmark of more severe forms of MS; and (4) a small amount of generalized cerebral atrophy (same). Even though this all wasn’t exactly great news, I truthfully didn’t mind that much because I figured it would be definitive evidence that I belonged on Ocrevus.
• Finally, on 10/31/2017, which felt like an eternity later given the Google search results I had been ruminating on without a doctor to walk me through them, I had a followup neurology appointment to discuss my results and see whether my suspicions were true.
• My doctor confirmed they were!—sort of. He agreed that the results were troubling, but said that, to really evaluate disease progression (as well as to satisfy strict insurance company requirements for a third-line drug like Ocrevus) he’d need to see my previous MRIs first to compare with this new one, and so we definitely should get to work on transferring those old records over stat and—
• wait huh?
• aw man
• Apparently UCLA had never received the CD, even though Rush maintained they had long before sent it out. Despite what I thought were my best efforts, yet another whole month had come and gone with no discernible progress being made toward my (really pretty simple) goal of getting prescribed a medicine.
• With a frankly upsetting lack of urgency, my doctor told me to schedule a follow-up appointment for three months in the future. After a bit of pushback from me, he remembered how long I had been waiting already and agreed that—as soon as the old scans were in the UCLA system—we could schedule an emergency appointment again.
• He also ordered an Ocrevus-specific battery of bloodwork to confirm that my body could handle the medicine. This one was easy: I just walked about 100 feet over to a different building in the UCLA hospital system and got six vials drawn almost instantly. At one point, after the nurse drawing my blood reloaded a vial with impressive speed and precision, I complimented her on how good she was at her job, and I spent the rest of the day feeling good about myself for being nice, though I’m sure she just thought I was an odd fellow.
• A neurology coordinator with whom I have now exchanged, like, 20 emails where I think I’m being polite in reminding him about what I need from the office but I’m sure I’m actually just being annoying told me he’d get to work remedying my records situation immediately, in the process giving off the impression that he’s a bit of a “whiz” with this kind of stuff and would have his magic worked in no time.

NOVEMBER: ten days later and still no good news. The coordinator told me that efforts were steady but still fruitless, which made me think that he probably hadn’t actually even tried yet, or maybe had called once and then had given up after being put on hold for a little while.

• Luckily, I was able to find a block of time in the middle of my school schedule to duck into an abandoned room at the law school, turn on my speakerphone, and listen to the Rush hold music for nearly an hour while passively completing other tasks. For their hold music, this particular office had a playlist of songs which are not fun to listen to from the 1950s (think “Lollipop” or “Mr. Sandman”) which all sounded like they were being played underwater in a room full of static. That’s my jam, I thought to myself each time a new song started, which was funny because actually the songs sounded bad.
• After being connected with a human, my situation was almost instantly fixed, and Rush agreed to express ship the CDs. This confirmed my suspicion that my coordinator had not actually tried very hard to get the records, though after being on hold for 50 minutes I could not exactly fault him.
• Ten days after that, I knew that—barring some sort of catastrophic mail mistake which honestly by this point I should’ve been expecting—my records should have arrived at the office. Finding the online patient portal to be an ineffective way to guilt trip my doctor’s office into doing errands for me, I decided to physically walk into my neurology office and ask whether they had received the CDs.
• Somehow (of course) they hadn’t, but that apparently was only because the CDs are always first shipped to the larger UCLA records department, which then itself uploads the records into the database independent of the neurologist’s office. Though this was encouraging, it was also frustrating in the sense that I was still counting on someone from the neurology office to then notice my scans had showed up in the system and notify me about it, something which seemed unlikely given trends I had smartly picked up on.
• On 11/20/2017 (right in the THICK of studying for my first round of law school finals), I received an automated letter from UCLA informing me that my records had been uploaded into the system a few days prior. A-ha! PROOF!
• I sent a message through the patient portal informing my doctor that the records were in and hint-hint it might be a good time to take a look and then squeeze me in for an appointment. This was a limp and weak gesture that I now knew would not really work, but I figured I had to do due diligence before pestering any further.
• No response. To be fair, this was around Thanksgiving and I’m sure personnel were out of the office and whatnot, so no hard feelings.
• A week later I became desperate enough to again employ my “walk right into the clinic and be really sheepish and polite to the receptionist” strategy, this time bringing my letter as a bartering chip for an emergency appointment. I was told this letter would be passed along to a scheduling coordinator who would look for a slot to squeeze me in, though to my frustration it turned out this person was the same guy who wasn’t particularly responsive to my messages on the patient portal.

DECEMBER: On 12/7/2017, something great happened: I got word that an emergency appointment had been found for me! It was for 12/15 (the day after my last exam).

• “So, we have you on Ocrevus now, right?” my doctor asked as he walked me back to the exam room, and I had to think the letters “uggggg gggghhhaghhaghh uggafahasvh.”
• Also: maybe it’s more fun to know that my doctor is a very old man who is normally wearing a mysterious wrist brace and usually has a very phlegmy cough. Overall, I really like him. He graduated from medical school in 1966, meaning he’s been working for over 50 years, and he’s very cranky in a way that I find fun. One time, he told me a story about how he threatened an insurance rep who was denying a patient a drug, and I thought it was cool.
• After reminding my doctor that, actually, he now had the scans *which he needed to look at* in order to determine if he could put me on Ocrevus, he pulled them up on the computer (which he totally uses exactly like you’d expect) and soon saw all he needed to see.
• Incredibly, unbelievably, beautifully, he left the room and returned with a prescribing form for Ocrevus, which I filled out and was told would be faxed to Genentech, the company which manufactures the drug.
• All I had to worry about at this point was something called a “washout” period, which basically is the time I am supposed to allow for my previous medication to get out of my system before beginning the new one.
• He was not 100% sure what the washout period for Gilenya to Ocrevus was (it’s not exactly something that’s yet been studied), but he told me he would let me know soon, and until I heard from him to not yet stop Gilenya.
• Unfortunately, I was also told that he would be leaving to go home for the holidays soon thereafter, which I knew from experience meant that I would not hear anything for the remainder of the year, or perhaps ever again.
• In an attempt to get the clock running on the washout period as soon as possible I again sent a few emails through the patient portal between 12/15 and 12/31, but did not hear back.
• While home for Christmas, I got very sick with the flu, which sucked.

JANUARY: on 1/2/2018, I decided to call the Genentech people myself to see if I was in their system yet or whether they had any information about the washout period from Gilenya to Ocrevus. I wasn’t (the prescription hadn’t been faxed in yet (uggasfhacljk)), and they didn’t (they just said to consult with my actual doctor (asfjaklsdha;sdhrw)).

• On 1/5, I decided to AGAIN peacefully storm the doctor’s office and speak with my very best friends, the rotating cast of helpful receptionists who take pity on me whenever I come in.
• To my surprise, that day’s receptionist told me my prescription had been faxed to Genentech the day before and that I should be hearing things soon! I couldn’t believe it. Still no word from my neuro about the washout period (and he was still out of the office), but she said she would again pass along a reminder for him to look into it and let me know. This woman is my hero and celebrity crush.
• Yesterday, on 1/10, I received an out-of-the-blue voicemail from a caller identifying themselves as being from what sounded like the Ivy League, which was very exciting for a dork like me who worships good grades.
• After Googling the phone number, I saw that it was actually a home infusion company called the “I.V. League” (a pun, you see). I called them back and they began trying to schedule my first dose of Ocrevus immediately. Wow! What?? Where was this all coming from so suddenly like this?
• WHILE BRIEFLY ON HOLD with the IV League, I received a message in my patient portal informing me that the washout period is 30 days. I looked at this while still on hold. Great timing. Perfect. Just in time.
• Great, yeah.
• Man, if only there had been… hmm, say, 30 days in a row where I wasn’t doing anything between, like, December 10th-ish and January 10th-ish. Like, imagine a month where I had just finished school, out on a sort of “winter break,” if you will.
• Hmmm
• I told the woman on the phone with me about the 30 day washout requirement which I had literally just learned about and, though she had been ready to set me up for a home infusion to take place in the next few days, she scheduled me for a month in the future, February 10th.

IT IS OVER (I think!)! I can’t believe it’s finally over (hopefully!)! If you’ve read all the way through to the end (and I can’t imagine why you would have at this point, since it is so incredibly long and ultimately not nearly funny enough to justify the 4,000 or however many words this is), best wishes to you, and actually I love you. I love you so much. Please call me.