A story of access – or lack thereof


For the second year in a row, the World MS Day theme is access. Access may mean a lot of different things, and you can read more about it here, but to me, right now, it means access to the right treatment. So I am going to try to keep the long story short.

Back in September 2014 I had a relapse. I took an MRI and the results weren’t good. I had inflammation in the optic nerves and since my previous MRI I had a lot of new lesions and older ones appeared to be bigger.

I was on Copaxone then. I had previously been on Avonex, but due to severe side effects interferons were out of the question for me. So I had two other only options: Tysabri and Gilenya. At the time most European countries had already approved at least one of the three new drugs Aubagio, Tecfidera and Lemtrada, but in Portugal I could only choose between Tysabri and Gilenya.

The two neurologists I saw thought Tysabri was a good option. Call me a cynic, but they were probably leaning towards Tysabri because, even though it’s expensive, it’s cheaper than Gilenya.

Now of course, switching to a new medication like this takes time. First, there’s the JC virus test. My blood has to be shipped off to a lab in Denmark and the results can take a month to come back. Then, because these meds are so expensive, the doctors don’t have the final word about it. There’s an entire commission at the hospital that reviews the request and approves it. This takes time. And when it’s finally approved, you have to wait for your treatment to be scheduled. This also takes time because the hospital is overbooked.

Fast forward to February 2015. I’m still waiting. I stop taking Copaxone, even though no one told me to do so. But injecting myself everyday with something that hurts – and keeps hurting for several days – knowing that it’s not doing much to prevent disease progression takes an emotional toll, so I quit.

At the same time I start looking at my options in other hospitals, trying to figure out if the process would take as long somewhere else. I manage to make an appointment at another hospital. I like the MS specialist there, he’s thorough and professional, so I try to have my files and medical history transferred to this hospital. Of course, this also takes time. The doctor wants to run more tests, and that means waiting for more results.

In the end, this is what he tells me: Tysabri wouldn’t be a good option there because this hospital doesn’t have a day unit for infusions and other neurological treatments, which means I would have to be admitted and stay overnight twelve times a year. You’re kidding, right? No, he wasn’t. He thinks Gilenya would be nice for me, but it’s so expensive the hospital will deny the request. There’s one last resort: while new drugs are awaiting approval, they sometimes can be obtained under a special authorization. So I start waiting for a special authorization to take Tecfidera.

While I wait, two good news: Aubagio is approved early in April, and Tecfidera a month later. However, this doesn’t mean they are readily available to patients. They’re expensive, so the hospital’s commission needs to go through your medical history before it gives its OK. That takes time.

In the meantime, in May, the first hospital calls me to schedule my first Tysabri infusion. They have no information about my transfer and I figure I can’t wait much longer. But the day I go to the hospital they tell me that at the pharmacy they don’t have the commission’s OK – some piece of paper was lost or something – so still no treatment for me. I don’t have any words.

To sum it all up, as of World MS Day 2015:
Relapse in September 2014. Eight months and counting to start a new treatment, whatever treatment that is.
Reasons for not starting a new treatment have everything to do with costs. Treatments are chosen according to how much they cost, not according to patients needs.

Happy World MS Day. We still have a long way to go until everyone has access to proper treatment and care.


On a happier note, I just want to say thank you to all of you who stop by my blog every once in a while, whether you have MS or not. There isn’t much any of us can do, and sometimes I get pretty down, but knowing you’re out there feels encouraging and supportive, and in the end that’s all I want to take with me. So thank you.


3 thoughts on “A story of access – or lack thereof

  1. I’m so sorry they pulled the rug out from underneath you like this! They gave you hope and then dashed it when MS doesn’t wait around for better research and funding. You and everyone with MS deserves better. These kinds of back and forth games play with one’s head- as if chronic illness doesn’t do enough of that.
    I know you are already a very strong woman, but I pray for added strength to be supplied to you along with a treatment to slow the progression.

    Liked by 1 person

    1. Thank you. After all these months the waiting and disappointments are starting to wear me out. I honestly don’t know where I’ll find the strength to keep going. *sigh*


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