Home Infusions for MS Treatment

Over the years living with multiple sclerosis, I have gone through a number of treatments with varied methods of administration. I’ve had pills, weekly injections, daily injections, and of course, intravenously infused treatments.

In the case of my particular MS, it was finally an IV-infused medication, Tysabri, that stemmed the tide of my disease progression. For about a decade, I have been receiving that medication once a month at either a hospital or infusion center, which has never been an easy task. Recently, however, I have discovered a much simpler way to receive my critical treatment: home infusion.

My necessary medication

I have no doubt that starting Tysabri saved my life. My disease was starting to progress more and more, and had forced me to leave the working world at the still young age of 35. Starting Tysabri has, so far, halted that progression, and has left me wishing more people started more effective medications sooner.

While the treatment has been amazing for me, getting it administered has not been easy. It requires going to a hospital or dedicated infusion center. Which, for someone who lives in an area with poor public transit and doesn’t drive, is very difficult. For the last decade, I have relied on friends (which hasn’t made me feel like less of a burden, I can tell you that) and ride-share apps (a big expense when you are on disability) to get to and from infusions.

A bad incident paved the way

When attempting to get one of my infusions at the local hospital, I had a very negative experience that made me decide I could never go there again. The level of care there had fallen steadily over the years - they even stopped taking vitals before and after infusions and would also seemingly re-use items they shouldn’t. My treatment there was such that I simply couldn’t go back.

The problem was that this is the only facility I could get Tysabri administered that is reasonably close to me. And as I said, it was already difficult and a worry to arrange rides. So, I was put into a position to either switch my medication (which is always a risk) or, at the time, there didn’t seem to be any other options.

Home infusions save the day

My doctor decided to make some calls, as did a close friend of mine. By speaking with someone at Biogen (Tysabri’s manufacturer) it was discovered that I could actually get Tysabri at my home. These home infusions started during the COVID pandemic and continue to be available. It took a bit of messy coordination between Biogen, my doctor, my insurance company, and the company that administers the infusion. Eventually, though, it got approved and set up. I had feared that my insurance company would certainly say no to such a request. After all, it must cost a ton more, right? Actually no, it costs my insurance company less money for me to get a home infusion than it does to go get one at the hospital. I am still surprised by that.

A better treatment option

I’ve had my first infusion now and it went fantastically. A company delivered the medication and supplies the night before and then a nurse came the next morning and administered it right there in my living room. It was such a relief to get the medication and not worry about transportation, or the less-than-stellar hospital. The home nurse even took my vitals before and after! It was a better infusion experience in every possible way.

It’s worth exploring

It is important to know that this service is available. However, not only did I not know, my doctor did not either. It wasn’t until talking to the pharmaceutical company and asking about it that he or I found out that this was a possibility. That is not an ideal situation, that’s why I am writing this - to remind folks that there may be better options for you, but you have to be active and ask. It’s important to realize that your doctor may not know about these options either, and that going to the makers of your medication can be an enlightening experience. The makers of all the major treatments have patient support lines and that's how we found out about this option.

Starting Tysabri the first time changed my life and I have a feeling that starting Tysabri at home will have as big of a positive impact on my life!

Thanks so much for reading and feel free to share! As always, I would love to hear about your experiences in the comments below!

Devin

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