Covid Anti-viral Treatment - Scotland

[Clara_Bella]

I have PV and am on Hydroxycarbamide. I tested positive for Covid on Tuesday Symptoms so far are flu like; cough, runny nose, sore head and neck, fatigue. I had previously received a letter about anti-viral treatments so called the number as soon as I got the positive result and gave the requested info. I was told someone would call me back in 24 hours.

I hadn’t heard anything so called again today to be told that my case had been looked at and I was not eligible. Apparently I received the letter as a result of a ‘coding error’. Have any fellow MPN patients in Scotland managed to access these treatments? Hopefully symptoms will stay relatively mild but I am conscious this is only day 3 and the virus is unpredictable.

[hunter5582]

Sorry to hear about the COVID. I had it back in January. It took 12 days to shake the cold/flu symptoms, but they were not too bad. I did sundown every day, feeling progressively worse starting around 5:00pm. Have had some lingering fatigue post-COVID. Seems to be getting better.

I was able to access monoclonal antibody infusion here in West Virginia. Apparently automatically qualified based on age>65. Hope you find a away to access the treatment. Sometimes it takes persistence.

All the best. hope you fell better soon.

[MWxxxx]

Hi

I am afraid I cannot answer for Scotland but in England you are eligible for an assessment for the new treatments if you have PV and are on hydroxy or other MPN medication (except for aspirin). It is however, eligible just for the assessment - not necessarily treatment. I would have thought Scotland would have followed the same path. Visit blood cancer uk and there is a section there on antivirals broken down for England, Scotland, Wales and N Ireland. I would also suggest going through your Haematology Team, 111 or GP. It may just be the person you spoke to. Also if your symptoms are getting worse you have the right for a reassessment. There was confusion at the start and people with MPNs were left off the list but we were added later, so wondering if they are looking at the wrong information. It was confirmed to me that in the Revised Antibody and Antiviral Guidance appx 1 page 14 it states, "individuals with haematological systemic anti-cancer treatement (SACT) within the last 12 months". I don't claim to understand this sentence but my Haematology dept confirmed that this included MPNs on treatment. I hope you manage to move forward with this.

[Mazcd Partner MPNVoice]

Hi Clara_Bella we have information on our website for accessing COVID medicines, for people living in England, Scotland, Wales and N Ireland. I hope it helps. I also hope that you recover soon. Best wishes, Maz mpnvoice.org.uk/news/fast-a...

[DJK12]

I do hope you are feeling a bit better. As a fellow Scot it was very disappointing to read you had been refused the treatment. With the numbers still going up and the relaxation of masks etc shortly I had been perhaps falsely reassuring myself we would be offered them if we caught it.Diana