Packing MS in a suitcase

Let me tell you a story! Picture it…

A couple of years ago at the Shift youth conference in Bucharest, I talked to a couple of fellow MSers. Some of them told me they had moved to and lived in different countries over the course of their ongoing MS. I thought it was super cool, though kind of scary. See, I have no clue how moving from one European state to another goes if you have MS. But they sure made it
sound easy.

Here is my very “not-at-all-easy” story on how I moved from Latvia - a universal healthcare system country - to the United States of America - where it’s “every man for himself”.

First of all I feel like this needs a disclaimer. What kind of an insane person packs their stuff and moves to the US whilst having MS, knowing full well that you’re doomed if you don’t have good health insurance? A person who meets the love of her life, and he turns out to be American!

Now back to the story!

When it finally hit me that I will actually-definitely-one-hundred-percently be moving to the US sooner rather than later, I started roaming the MS support groups on Facebook, asking for advice on the best MS neurologists in the area I may be moving to. Thank God (or Mark Zuckerberg) for Facebook groups!

I felt like step one was checked off - I had a choice of three doctors that the Facebook MS community had recommended and swore they were the best. After telling my own neurologist that I may need to move sometime soon, we both concluded that it would be best if I tried to get in contact with the clinic before I move, and see if I can jumpstart the whole process well before I get on the plane.
Sounds easy, right? Just shoot them an email and you’re golden! Wrong!

Now, keep in mind this is my personal experience, so maybe I’m not 100% correct on this, but I feel like all the medical centres in the US are call-only. This is weird to me, because all of the clinics I’ve ever been to before in my country have the doctor’s work email on their page.

After what felt like a century, I finally found a random email on the clinic’s home page and thought - whatever, I’ll just send my question here and hope someone redirects me to the person I actually want to talk to. So I sent my “Hey, I’m moving, how do I sign up to be your patient?” email. And soon enough got an answer from their office, asking me to send over all the details about myself and my MS that I feel comfortable sharing via email.

Mind you that at this point I am still a good while away from actually moving. So the email exchange is just a big hypothesis on when I may arrive and if the doctor would even be available for me when I finally do. But at least they have my information and I know that they accept international patients, and they’d be willing to help me with getting me my medication as soon as possible.

Back to me still being safe under the umbrella of universal healthcare!

You see, in Latvia, the doctor prescribes the medication for three months at a time. Whenever you come close to running out, you just call the MS nurse and she’ll tell the doctor to send a new prescription to the pharmacy and you can go get the medication. I had a bit leftover from the previous prescription, and when I was about to leave, my doctor said she’ll prescribe me six months'
worth of medication, just so that I have some time and don’t have to worry about it.

I was still worried, but that’s fine.

Honestly, I was more worried about being detained for travelling with so many pills in my bag in the first place. However, no one even asked me for any paperwork (which I actually asked my doctor to write for me) that would explain the medication. But I’m fine with it. Less hassle is more peace of mind!

I should backtrack a bit and say that prior to getting my visa, I had to take the US embassy’s required medical testing to be allowed in the country. I passed everything until they read my primary care physician’s paperwork that said I have MS. Which turned out to be an issue. Not a huge one, but I had to email my MS nurse to get a transcript of “she has MS but she’s been doing fine lately and she’s on X medication” from my neurologist.

Now that I’m in the land of the free and brave.. But uninsured. It is all fun and games.. Until COVID hits right after I have just unpacked my suitcases.

I’m not an immigration lawyer, nor am I a big professional in visa policies in general. I obviously don’t know what’s what so correct me if I’m wrong. As it turns out, if you get in the country as a fiance - you get to have fiance insurance. No one told me that. But I guess I never asked either, and we did not use an immigration lawyer.
Anyone seen 90 Day Fiance?

My then-fiance and I didn’t care for the 90 days, we knew each other well already, and decided to get married 2 weeks after I had moved, to make sure I could jumpstart the employment authorization process and start working.

Turns out getting married makes things complicated - you can’t get the fiance insurance anymore or get insurance while you don’t have a social security number. Which I didn’t have. Because I had just applied for it. And my husband couldn’t add me to his, because of this reason as well.

See, Covid didn’t exactly help either. If you think government agencies are slow, they got snail-slow, especially with the whole world locked down without knowing when/if we’ll ever see “normal” again.

Months into the pandemic with no real progress, I realize I am dangerously close to running out of medication. This is probably a situation none of us would want to be in. Since I didn’t have my employment authorization, I would have been able to leave the US, go back home and get my medication. But then that’s all.

My application for a Green Card would be cancelled and I’d have to start all over again. There is an option though - emergency advance parole paperwork that lets you travel. It won’t guarantee entry into the US upon coming back, but after breaking down in tears in front of the immigration officer, I knew it was a shot I was willing to take. Call me crazy.

When I got the paperwork in the mail (along with my long-awaited employment authorization)the first thing I did was buy plane tickets back home to get medication before I fall into an awful relapse.

So I jumped on a plane, and thanks to my doctor who basically played my guardian angel, got another six months' worth of medication, so I have enough to last me for a bit until I find a job and get insurance.

(Sidebar: travelling during Covid pre-vaccine time was a whole different experience. 10/10 would not recommend.)

To my luck, I found a job basically a month after I came back from Latvia, which also had a pretty great insurance plan. This meant finally getting to see a doctor in America and getting on a regular prescription.

Of course, this was a good while after my initial emails to the clinic, so the doctor was in fact no longer accepting new patients. So I was referred to a different one. Now, I have no clue as to how amazing or not the doctor is that the Facebook people recommended, but the one I ended up with - another guardian angel, I swear! She quickly went through my records, and MRI pictures, and prescribed me the medication as well as making sure it was quickly approved by my insurance with no issues whatsoever.

However, every insurance is different and that is another thing I was not ready for. After switching jobs, my medication copay skyrocketed. Which resulted in yet another panic attack. It’s crazy that copay for the same medication can go from $15 to $3000 a month! Don’t ask. I don’t know. This is where big pharma comes in - they have specific programs to enrol into, that help cover the large copays. That’s the nice part. But first, you have to stop crying on the phone with them and coherently explain what you need help with.

Now, after what feels like a decade of reading done, you may have a bit of a clue on how this goes. And why I would probably not recommend doing what I did. My guess is if I had medication that I did not have to take daily, but, for example, used Ocrevus IVs, the stressful situations may have been avoided, but I use Gilenya, and I have no choice but to take it daily.

To sum up - I’m just really jealous of the people telling me about their relatively easy stories on how they moved within the EU, and how their MRIs in Spain are free of cost, while mine are.. well quite expensive.

Moral of the story: the things we do for love! But I’d do it over and over again if I had to! And at the end of the day, this is another experience I had to go through to see that MS really can’t stand in my way.

It may slow me down, but I'll never let it stop me!