My Annual MRI 2023 and 1 Year on Kesimpta

It’s that time of year again, I had my annual MRI. I always hate MRI day, but it also seems to keep getting easier and easier the more I do it. This year they actually let me do my MRI in the newer fancier machines. I thought they were going to offer to put on a TV show because the newer machines have a mirror that can reflect a TV, but the guy just left it on the fish screen saver. It was still nice though because it didn’t feel quite as claustrophobic and if I wanted to open my eyes it wasn’t quite as bad. Plus, I actually do enjoy that I get to pray for people. I love that I get to pray for people that I don’t hear from often, but I also always remember my loved ones that have either ongoing requests or have mentioned things to me recently. Between the time spent driving to the MRI, waiting for the MRI, and in the MRI, I have plenty of time to pray. 

The guy that was helping me this year was fantastic. Maybe it helped that he knew I knew the drill too. He got me in and out quickly and gave me time updates. The only issue I ran into was that the first nurse that gave me an IV apparently gave me the wrong kind and when he was trying to figure it out he kept wiggling the IV around in my arm and I thought I might pass out or throw up. Thankfully he figured it out before too long. 

For those that don’t know much about brain MRIs for MS, they typically like to do them with and without contrast. The contrast is administered through an IV. They do a few scans before giving the contrast and several more scans after the contrast is administered. The scans without contrast show you old lesions. The scans with contrast are able to show you if there are any active lesions. Active lesions usually stick around for 4-6 weeks before they turn into a marker that can be seen without contrast. 

This year’s report was not only good but great. I had no new lesions from last year. Plus, the one lesion that was active in last year’s scan they couldn’t find evidence of. Which is great, meaning it didn’t leave any permanent noticeable damage in my brain. My neuro said I can’t use my MS as an excuse for any cognitive issues since that lesion didn’t show up. Meaning, when I completely forget what I am talking about mid-sentence I can really only blame stress or age. He did review with me the three lesions that were on my scan last year. They were very small, so small that he had to adjust his screen so I could see them. They technically can impair balance or numbness, but I have not and do not feel any impact from these. He also agreed that since I weight train and am so active that it must not bother me.

This is all great news. The treatment I have been on for the past year is working! So, here’s the bad news. Premera is continuing to refuse to pay for my treatment. They want me to try a different treatment first and fail before allowing me to do Kesimpta. It literally says at the bottom of the document, “records your healthcare provider sent do not show that you tried and failed Ocrevus”. It’s quite ridiculous if you ask me. This past year I have been receiving medicine for free from the Alongside program. They get you on the drug and assume that within a year your insurance company will agree to start paying. And, it sounds like for some people this is the case. This program only lasts one year. And, for your reference, this medication is roughly $100,000 a year out-of-pocket.

My understanding is that there are three different programs to help people who are trying to get on this medication. The Alongside Program is the first one. The second one for those who have finished the Alongside Program and still need assistance is the Novartis Patient Assistance Program. This is what I am hoping to get on for this next year. However, if they decide we are under the income limit, we will most likely be over the income limit next year. This program can continue for you for as long as you need it and meet the requirements. The problem is that we are right on the threshold of “too high of an income”. But, that is laughable in itself because we don’t make enough money where $100,000 for medicine is easy to come by. There is a third program that is in place to assist those who do have insurance coverage but still have a massive out-of-pocket expenses. They allow up to $18,000 a year in assistance and it counts towards your deductible. 

Please start praying that the Novartis Patient Assistant Program approves me and that I can continue to receive free medication. The last week or so has already proved to be a massive headache making calls and trying to figure out if my insurance is going to change their mind. Honestly, all of this stuff is so much of a headache. I also find it incredibly hard to make long phone calls day after day. The kids start interrupting and it feels impossible. To top it off, Premera is being a real pain about birth control of all things. I am not only dealing with this medication hassle but just trying to get on a different birth control. So, I have doctors and all sorts of people getting irritable or ready to start crying Rachel on the phone. It isn’t fun for anyone. Our healthcare system needs some serious work.

As a quick personal update, we are all doing well and loving the sunshine this summer. We have been soaking up time at the pool, jumping on the trampoline, going to the park with friends, lots of walks and bike rides, and more. Luke starts Kindergarten next month and I am personally having a tough time with this, but I am sure we will all adjust. And, it just means some extra one-on-one time with Audrey and lots of time playing with dolls.