MS Patients Face Additional Barriers Due to the Coronavirus

MS Patients Face Additional Barriers Due to the Coronavirus
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Well, this is super weird. Being told to stay home and leave our houses only for food, medication, or exercise is bizarre for those of us in England. It’s starting to take a toll on my mental health. 

The other day, I stood in line at the end of my road for a half-hour to get into my corner shop for essentials. In the store, tape covered the floor, marking out 2-meter sections to ensure that no one stands too close together. One can only access the aisles if they are empty of other shoppers.

Everyone in the store was wearing a face mask, except for me because I can’t seem to find one anywhere, and the staff were wearing gloves. Shopping baskets and carts in all of the supermarkets are now sanitized by staff before shoppers are allowed into the store.

And there are many other changes to “normal” things, including home schooling and not being allowed to go to the local doctor’s office. 

Another thing that’s crazy: Every Thursday at 8 p.m., the whole of England (admittedly minus me, because I’m typically exhausted and in my pajamas by that time) stands in their doorways to clap for our healthcare workers on the front line. It’s a beautiful thing to do, but it’s also weird. I’m sure if our healthcare workers had the choice, they’d prefer the people clapping in a doorway to help them out by staying at home rather than having parties, which several houses near me seem to have done lately. 

Our healthcare workers in England are working like crazy and experiencing an increasing number of contagious patients heading into their hospitals. It’s also a scary time for patients with chronic illnesses like multiple sclerosis. At least telemedicine is now an option. 

Many of the people with multiple sclerosis on my social media feed are having to go to the hospital to receive their infusion treatments. Treatments like Lemtrada (alemtuzumab), Ocrevus (ocrelizumab), and Gilenya (fingolimod) can suppress the immune system, leaving patients more vulnerable to infection. If you receive these treatments, the MS Trust offers some guidance about how to manage them during this pandemic. 

If you’re concerned about continuing with your current treatment, it’s essential to talk with your healthcare team.

One thing that currently worries me is the thought of having to have a blood test and to pick up my Tecfidera (dimethyl fumarate) tablets. I’ve mostly remained in my house for weeks, and my anxiety admittedly is rising. 

Taking Tecfidera means that every three months, I need to head to a hospital for a blood test. My hospital is over an hour away, which is a long way to go for a blood test. When the test is completed, I then need to revisit the hospital to pick up my medication a week later, exposing myself to possible infection yet again. The pharmacy at the hospital has just changed hands, and the new one won’t deliver. Sigh.

We have a few weeks of tablets left, so let’s see where the world is then. 

Have you had to experience an infusion in the hospital or found it difficult to access medication during this pandemic? Please share in the comments below. 

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Jessie Ace is host of the DISabled to ENabled podcast. A podcast that aims to inspire people living with chronic illness. She’s interviewed everyone from Paralympians, radio DJs, chronic illness bloggers, and marathon runners. She’s also a writer and illustrator for the biggest MS charities worldwide such as the multiple sclerosis today, National MS Society, MS Society UK, shift.MS, MS-UK amongst others and she has also written articles and illustrated for Momentum magazine, MS Matters and New Pathways. Jessie was diagnosed with MS at 22 years old and says MS makes her feel blessed every day to be able to live a new life and to connect with so many amazing people. Her own experience of being newly diagnosed so young was negative and scary – she wants to change this for other young people and support them through the process by being a patient advocate.
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Jessie Ace is host of the DISabled to ENabled podcast. A podcast that aims to inspire people living with chronic illness. She’s interviewed everyone from Paralympians, radio DJs, chronic illness bloggers, and marathon runners. She’s also a writer and illustrator for the biggest MS charities worldwide such as the multiple sclerosis today, National MS Society, MS Society UK, shift.MS, MS-UK amongst others and she has also written articles and illustrated for Momentum magazine, MS Matters and New Pathways. Jessie was diagnosed with MS at 22 years old and says MS makes her feel blessed every day to be able to live a new life and to connect with so many amazing people. Her own experience of being newly diagnosed so young was negative and scary – she wants to change this for other young people and support them through the process by being a patient advocate.

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19 comments

  1. Chrissie Lea says:

    I am in the UK am on Tecfidera too and was actually due to have my monitoring blood test today but received a phone call yesterday to arrange them to come to my house and do the blood test at the end of the week. Which is amazing because I was honestly bricking it at the thought of going to the surgery.

    But my Tecfidera is delivered to me by Alcura. So aside from calling them to arrange a delivery when they forget to do so, I luckily don’t have any bad experiences relating to it.

    • Jessie Ace says:

      That’s great news. I’ve not heard of having blood tests in your house before, I’ll look into this for sure, thanks 🙂 Stay safe, stay healthy and stay #ENabled

  2. A says:

    Hi Jessie,
    I love your article, all of it.
    I am in the UK like you and share all of your sentiments (especially the parties)!
    Do you not kept your Tecfidera delivered to your door? I get mine delivered by from Alcura by a courier service. It’s a great weight off my mind, as my memory is increasingly squiffy, so I just wouldn’t remember to reorder it otherwise. Can you get this done for you?
    I too have an MS nurse appointment this Friday for blood tests, and although I’ve had a high-risk letter (ie told to totally stay in – I live on my own, so that’s tricky in itself) they say you should still keep appointments, so it’s all pretty freaky. I think I’m just going to have to be super-quick.

    Lots of love to you

    A x

    • Jessie Ace says:

      Glad I’m not the only one! I’ve not heard of Alcura, I’ll look into this. Unfortunately, the hospital pharmacy won’t deliver my medication because I’m technically in the next county 🙁 did you ask for it specifically? Stay safe, stay healthy and stay #ENabled

      • A says:

        Hi Jessie,
        Sorry I didn’t see your reply! No I didn’t ask for it, it just got set up for me automatically when I got diagnosed. I assume the neurologist did it. I’m in Lancashire, if that makes any difference. Maybe you could ask your MS nurse about it (although, TBH, I find my nurse pretty unresponsive so maybe go straight to the neurologist when you see him!). I get it delivered to work normally, but recently because of the virus it’s come to my door. It’s a massive help. Good luck! And take care x

  3. Kristin Hardy says:

    I get an osteoporosis injection that requires a blood test in advance. Because I am considered at risk (immunomodulators, MS), I qualified for having a visiting nurse show up to do the blood draw and then return to give the injection. More risky than not doing it at all, but they are tested frequently, check temperature before every visit, and show up in a mask and gloves. Would the NHS support those? See if your neurologist can go to bat for you.

    • Jessie Ace says:

      I don’t think my neurologist even knows who I am 🙁 that’s awesome that they come to you! I think the NHS staff are wearing full protective gear but there isn’t enough of it. Stay safe stay well and stay #ENabled

      • Kristin Hardy says:

        Hi, no, the neurologist is an hour away. The person who came to my home was a “visiting nurse” who gave me the blood test and the injection. The neurologist just made the argument to the insurance company that going to the hospital put me at unacceptable risk and that I needed those services at home that. Your neurologist should be ready to do that for you, too.

        • Jessie Ace says:

          Ah, I see what you mean. Because I’m in England we have a different relationship with our neurologists, I quite often don’t see the same one at appointments.

  4. Jeanette Williams says:

    You are so lucky to have the option to have labs drawn in your home!! I am in the US , California, and will be driving 40 mins to get labs done prior to my May infusion of Rituximab.
    I definitely want to discuss the possibility of forgoing my infusion with the COVID 19 pandemic in progress. It is concerning to be in an immunocompromised state right now!!

  5. Terry says:

    Hi Jessie:

    I’m in Denver, Colorado. Loved your article and I can relate. Only here, they are just by-passing any blood work…and anything else for that matter…until our lockdown is lifted. Groceries, pharmacies, home improvement stores are open. Any surgeries, testing, etc. is on hold.

    But at 8:00 pm every night, we howl like wolves or try to mimic the war cries of our Native American ancestors. It’s a Wild West thing. Stay safe everybody!

  6. Your comments are read to me via my mum for convenience which I always find interesting and full of life. I was diagnosed with MS when I was 33 years old. My eldest brother at the age of 25. Fortunately this Corona Virus have not affected my method of medication as it is delivered to my home. However I cannot begin to imagine how chaotic things has become for most of us. MS is bad enough so to have any other kind of hinderance and locked down? I chill out with some soulful music to clear my mind.

  7. Quiggy says:

    I’m in the US and my problem is that my doctor was trying to cancel my Truxima infusion that I receive every six months. While I’m not excited about potentially exposing myself, I am also progressive and am in dire need of that infusion on time, every time. My condition, in fact, advances faster than I can receive my infusions so skipping one is clearly not an option for me. I had to fight for my most recent infusion and anticipate having to fight again for my next one. And I will, for that is what we do best is it not? Fight.

  8. Mandy Shears says:

    Hello, I was diagnosed Oct 2018 with MS and have been having Tysabri infusions every four weeks at my local hospital an hour away. Of course I am nervous at this very uncertain time, but necessity dictates that I must proceed. I want to take this opportunity to praise the staff who selflessly put themselves in harms way for me! We all have things to face and going to the hospital is mine at present, but I will get on with it and I won’t complain!

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