“I caught COVID-19 and I’m a former ALL patient” Advice and support available

In this blog, our Advocacy Officer and former ALL patient, Sophie, discusses her recent experience with testing positive for COVID-19 and accessing antiviral medications. We know that this process doesn’t always run smoothly, so Sophie not only explains how the process should typically work, but also what to do when something goes wrong, and how she can help other patients who are in this situation.

As a former ALL patient myself, I know how difficult the last couple of years have been in terms of COVID-19. Unfortunately for me, I have no B-cells circulating around my body (B-cell aplasia) as a result of the CAR-T therapy that I received a couple of years ago, meaning I am highly susceptible to all sorts of infections – including COVID-19 – despite being fully vaccinated. In August, I tested positive for COVID-19 for the third time, so I want to share my experience of testing positive for COVID-19 and accessing treatments with you.

On Sunday morning, I woke up with a sore throat and a hoarse voice. I put this down to being out and about over the weekend with my friends. It eased as the day went on, so I wasn’t too worried. On Monday, my voice was still hoarse and I felt like I was coming down with a cold. Knowing my immune system, I wasn’t too surprised, so I just rested for the remainder of the day.

On Tuesday, my voice had nearly completely disappeared. I tried to go about my day as usual, logging on to work from home for the day. However, after one of my morning meetings, I noticed that I was starting to get a little warm. I did my temperature and saw that I was running a low fever, so I knew it was time to get the lateral flow tests out. Within a few minutes, I could see the dreaded ‘T’-line appearing. Thankfully, this wasn’t my first rodeo with COVID, so I knew exactly what I needed to do.

The first thing I did was register my positive test result on the gov.uk website. This is essential, as it triggers a message to the NHS to say that I may need treatment due to being immunocompromised. This should be done as soon as possible, as any treatment must be commenced within 5 days. I also contacted my haematology and immunology team, who both told me that they would contact my local COVID Medicines Delivery Unit (CMDU) to chase a telephone assessment on my behalf. 

Within 90 minutes, I received a call from the CMDU. I was asked several questions to assess my eligibility for treatment. This included questions about the symptoms that I was experiencing and my medical history. After answering all of the questions, I was told that someone would call me back if I was eligible for treatment. If they were to find that I was not eligible, then I would not be contacted again. 

Shortly after this, I was called back by the doctor at the CMDU, who told me that I was eligible for treatment. They offered me an appointment for the next morning to go in and receive Sotrovimab (Xevudy), which is an infusion of neutralising monoclonal antibodies (nMABs). The infusion took around 30 minutes. I then had to wait for 1 hour for observations before I was free to go home. I started to improve gradually over the next few days – it took a while for the fatigue to subside, but I got there eventually. I am now back at work and feeling well again.

So, why am I telling you about this? Well, I felt that it was important for me to speak about my experiences with accessing antiviral treatments to show other patients how the process should work. However, I understand that for some patients, the journey through this treatment pathway may not always run smoothly. Therefore, I think it is also important for me to tell you what to do if something goes wrong.

As soon as you get a positive test result, you should record this on the gov.uk website to trigger that call from someone from the NHS. If you have registered your test result and you haven’t heard anything from the NHS in over 24 hours, get in touch with Advocacy at LC as soon as possible. You should also contact your haematology team to see if they can contact the CMDU to help the process along. 

Once you hear from the CMDU and you undergo your clinical assessment over the phone, you may be told that you aren’t eligible to receive treatment. If you are unsure about a decision that has been made about antivirals, you should contact your clinical nurse specialist (CNS) or haematologist and ask if they can talk to the CMDU. 

If you won’t be able to travel to a treatment centre, please let the assessing doctor from the CMDU know when they call you. Even though you won’t necessarily be able to choose which treatment that you will receive, it is important to let the team know if travel will be a potential barrier to you getting treatment. 

You may not get antivirals when first assessed, but if your symptoms start to worsen, you need to get back in touch with the CMDU, or the person who made the referral for you (GP, haematologist etc), as soon as possible. Treatments must be administered within 5 days of the first symptoms starting, so time is of the essence with this one.

I hope that you enjoyed reading about my COVID-19 antiviral experience, and that you found it helpful. Remember – if there is something that you aren’t sure about, or if the process of accessing antivirals isn’t going smoothly for you, please reach out to me using the contact details below.

Contact Sophie and the team by emailing advocacy@leukaemiacare.org.uk or message via WhatsApp on 07500 068 065.

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