In this post, I’d like to share challenges I came across while managing multiple health insurance coverage changes while getting expensive treatment required for my MS every month. This can be very demanding for those who do not know; health insurance carriers require prior authorization (PA) for most of the specialty medication needed for MS. In other words, a simple prescription from a doctor-neurologist is insufficient; tedious paperwork must be done to justify the need for the meds. It takes weeks or even months. The PA must also be renewed yearly and whenever you switch health insurance.

This is incredibly frustrating because the system is set up for health problems that could be cured. However, if you have a chronic, incurable health condition, such as MS, it feels odd to have to prove again and again that you still have the disease that you would very much like to get rid of.   

Thanks to My Wife

First, I must thank my wife for being super supportive of me throughout the years and helping me with healthcare coverage through her employer’s plans. I run a small business, and we were priced out for our company group’s medical plan. One day on our annual renewal date, they just announced the monthly costs for all our employees would skyrocket to about $7-10k/ month. That marked the end of our company’s health insurance coverage policy. I have no doubt this has happened due to my MS and the associated high medical costs I incurred on my plan with Aetna.

So, my medical needs were covered under my wife’s health insurance for a few years, and everything went smoothly with receiving Kesimpta every month, seeing a neurologist twice a year, and doing MRI scans every year.  Understandably, I or any other MS patient, is not a good customer to a health insurance company, paying something like $1-2k/ month and costing about $10k/ month in meds and services. The only leverage you could muster is:” If you do not give me what I need, it will be even more expensive down the road!” That is true, but what if some other healthcare insurance plan can take care of it?

Kaiser Permanente

Anyway, my wife has decided to switch jobs, and her new job came with a new medical health insurance plan: Kaiser Permanente. I was a little worried when I learned my current neurologist is not in the network, and I cannot see any other physicians but those working for Kaiser to get the meds I need.  However, I was encouraged when they immediately scheduled an appointment with a neuro with MS expertise. Also, they have preapproved three months of doses of my MS medication – Kesimpta, and made those available for pick up at a pharmacy near where I live.  So far, so good, I thought.

I did a little bit of research on Kaiser’s formulary and found that they prefer Rituxan over Kesimpta. I already did my research on this some time ago and published it here, and I felt prepared. The appointment with the neuro was OK. The doctor was young but understood the MS field and ordered obligatory lab tests and annual MRI.   Then we discussed the treatment options, and it turned out the only available options for me were Rituxan or Tysabri. Rituxan was recommended because it is the same class as Kesimpta, and I would not have to wait to get off Kesimpta’s effects.

However, I was concerned as I knew Rituxan was never intended for long-term use as it was initially a lymphoma drug. It has not been “humanized” as Kesimpta or Ocrevus (also CD20 monoclonal antibodies), and there is roughly 20% chance that adverse events such as rash and allergy could arise over time. Rituxan has not been approved for MS by FDA. The efficacy in MS patients has also not been verified by any official trial as it is an older off-patent drug. Nobody wants to spend money on a clinical trial as a result. I also found a recent scientific article reporting a double rate of MS relapses in patients on Rituxan vs. Ocrevus. I discussed my concerns with the Kaiser neurologist, and she said she could file an appeal on my behalf, but it would likely get denied.

What About the Doctor’s Oath?

Later, I received a letter from Kaiser explaining that under their formulary rules, to qualify for Kesimpta, I must have previously failed Rituxan and shown signs of intolerance to it. I did not like the idea of getting off the medication I knew worked well, to try another less effective medication with 20% chance of some side effects at all.   Can they even do this? Obviously, they want to save money, as Rituxan is a lot cheaper than Kesimpta. Isn’t this breaking some ethical rules that physicians are bound to follow? My memory of the Hippocratic Oath was always putting the patient’s  (myself!) health first. Are even doctors swearing the oath these days?

I summarized my thoughts on a paper and shared them with the neuro from Kaiser. I have also explored other possibilities, such as what I need to do if the first appeal gets denied. It seemed like the only option they offer is to appeal individually by myself or to nominate some physician from within Kaiser network to represent me. I would then have to compensate this person somehow.  The Kaiser neuro did not even know about this second appeal option and said that the appeal she did for me was all she or her team could do.

The Denial and Leaving Kaiser

A few months later, the appeal was denied, citing the same formulary rules. To make the long story short, it was obvious to me what the problem of Kaiser is: a massive conflict of interest between the physicians and the Kaiser department that handles insurance claims. They are not independent. The physicians are also Kaiser employees and are probably bound by internal rules.

I used all of the Kesimpta doses through Kaiser and some from the Kesimpta manufacturer support program (Alongside Kesimpta) and thought I might have to try Rituxan after all. However, my wife left her job in the meantime and my Kaiser coverage was going to end in two weeks. Great. So, I explored the open marketplace for healthcare insurance and found Elevate Denver Medical plan that had Kesimpta on its formulary. Prior authorization from the insurance company was still required, but it seemed straightforward since I already had a prescription from the Kaiser’s neurologist.

Elevate Medical Plan

I signed up for the Elevate Denver Plan and sent the prior authorization (PA) documents to the Kaiser physician for approval. To my surprise, the neuro said that there was no point in doing the PA since it was already done and denied at Kaiser. I said this was a different plan with different rules and that all that needed to be done was to verify my diagnosis, as she confirmed during my recent visit and by reviewing my MRI scans. Some messages were going back and forth and some silence until the Kaiser coverage expired. At that point, I was told that since I have no Kaiser coverage, their physician cannot help me unless I try to schedule another visit and pay out of pocket for it. I had serious doubts and thought that this would likely lead nowhere.

Denver Health

Next, I was able to schedule an appointment with yet another neuro that was within the network of the new (Elevate) healthcare plan at Denver Health. But the appointment was only going to happen in about two months! Luckily, I was able to get free meds from the Alongside Kesimpta program to cover these two months, but I knew that even this source would run dry soon.    

Denver Health is an impressive hospital complex in downtown Denver. I went through the basic checkup by a nurse, and I was worried about the neurologist as I could never verify who I was going to see that day. A junior MD showed up and did a basic neurological examination and told me that another neuro, an MS expert, was going to come to see me as well. Finally, Dr. E Alvarez showed up, and after a short conversation, I realized I was talking to the best MS specialist I have encountered thus far.   

The Great Neurologist Bonus

We had a good discussion on the statistical prospects of patients with MS. Although he made it clear that there could not be any statistical data with the newest treatments since it was just a short period of time (Ocrevus started in 2017), he was able to roughly guesstimate the prospects of newly diagnosed with RR-MS that are on high efficacy DMT. His estimate was that the chances of transition into secondary progressive MS in 10 years after diagnosis are now roughly 5%, and not 50% as it is without any treatment.

He also stressed that even if the dreaded transition into secondary progressive MS happens, the disease progression is so much slower that I do not need to be worried that much. Lastly, Dr. Alvarez stated that he does not see major efficacy differences between Rituxan , Ocrevus, or Kesimpta, except for adverse reactions during the infusion necessary for Rituxan and Ocrevus administration. “If I had MS, I would probably want to be on Kesimpta, too,” he declared. It’s just easier to self-administer monthly doses at home, and adverse reactions resulting from infusion are simply not there.

“OK, at least a minor justification of all the stress and effort I have placed into this,” I thought!

And by the way, it takes about five months before the Kesimpta stops having an effect. It is OK if you skip one or two monthly doses, Dr. Alvarez reassured me! I knew this, but for some reason, it still makes me nervous when my dosing schedule gets off its rigid timeline. It feels like the breaking of a sacred seal! I hope I won’t have to explore this avenue anytime soon!  

Happy Ending

So, the ordeal finally ended, and the prior authorization for Kesimpta was granted in less than a week. I got a new Kesimpta dose delivered to my doorstep immediately after that!  Ultimately, I did not miss a single dose and got the lucky bonus of meeting with a knowledgeable neurologist. Perhaps I should not stress out that much next time!

I did not like the way Kaiser treated me at all, though. The Kaiser neuro ghosted me over a simple request after I spent a lot of money to see the doctor, doing lab work, MRI, etc. It’s like you cease to exist if you leave the Kaiser network. On the positive side, I like the idea (kind of) that they are pushing forward a cheap yet effective Rituxan for MS patients. They will probably be able to gather more evidence of Rituxan efficacy in MS, which could serve the greater good and give patients like me more confidence in the future. However, I do not think this should be done at the expense of patients with enough other problems.