UPDATE FOR MPN PATIENTS IN ENGLAND RE:- Fast access to COVID medicines for people with blood cancer

[Mazcd]

Further to the announcement that from 20 December 2021, across the UK, some people with blood cancer who have symptoms and test positive for COVID may be eligible for:

•sotrovimab (an antibody treatment)

•molnupiravir (an antiviral drug) if they can't have sotrovimab

These medicines aim to stop COVID becoming severe and to prevent hospitalisation or serious illness in those most at risk. These are approved medications. You can read more about this on our website here. mpnvoice.org.uk/news/fast-a...

In England, MPN patients (eg those with ET, PV and MF) who are on a drug treatment for their MPN (not just aspirin or venesection) are eligible for these treatments.

What happens if you test positive?

If you're eligible for treatment (have symptoms) and test positive for COVID-19, it's important to start the treatment as soon as you can and you must be within 5 days of the start of symptoms to be eligible.

You will need a positive PCR test result, a lateral flow test result is not sufficient.

The NHS will contact you within 24 hours of your positive PCR test result. This will usually be by text, email or phone call from what is now called a COVID MEDICINES DELIVERY UNIT (CMDU).They'll give you more information and check if treatment is right for you.

If you have not been contacted within 24 hours of your positive PCR test but you think you may be eligible for treatment, call 111. They will be able to make an urgent referral if needed.

Treatments for COVID-19 are free of charge on the NHS. The NHS will never ask for your bank account or card details, or ask you to pay for treatment.

[Kdavie12]

Hello Maz, Happy New Year!Thank you very much. I have Covid and am isolating till Saturday. I was contacting by a doctor and she offered me the medication but as my symptoms were not severe, she suggested I don’t take them. I felt so relieved to be offered it because Covid can be deadly. In the beginning I felt poorly but soon felt better.

I had a sore throat, a cough, a headache and pain in the ribs.

[Mazcd Partner MPNVoice in reply to Kdavie12]

Hi Kdavie12, Happy New Year to you as well. Glad to hear that you don't have severe symptoms and that you are feeling better. Take care, Maz x x

[Swede]

Hello,sounds great. I just wonder....I have yet not been offred any jabs (got them via work eventually)so I have no faith that I will be offered any of those medicines. When I mention MPN voice they smile and say :Yeah yeah...

I would like to know who has agreed to this or negotiated this? That might help,I hope.Thanks /MonaLisa

[piggie50]

Thank you Maz, very clear.

Happy new year, Judy 💐

[katiewalsh]

Once again I’m so impressed by your health system Maz. Where I am in the U.S. it takes many days to get PCR results -some wait more than a week- & there is too little medication for early treatment. So glad my MPN friends there have these protections in place! Katie

[EleanorPV]

Covid is coming closer. My son has a positive test (thankfully he doesn’t stay with me). He was very ill with the vaccine and now day 3 is in bed with Covid. The NHS computer said no to my 3rd booster Anyone any first hand information, from Scotland, re antivirals for MPN patients.

[EleanorPV in reply to EleanorPV]

Update for any Scottish antiviral system. Below is the link, including the health board numbers to call if you get a positive PCR test. It is important to start the antivirals within 5 days of the first symptoms. I received this information from another person, with blood cancer, who went through this process. This person didn't have any symptoms, therefore, didn't have a need for the antivirals. nhsinform.scot/illnesses-an...

[DJK12 in reply to EleanorPV]

Do you know if they had been sent a home PCR test or went for one and then phoned appropriate number? Scottish Chief Medical Officer said before Christmas they would be sent out in New Year but I noticed earlier in week (and updated today) that website is ambiguous about home tests - do you think we phone the health board number for that as well? Not at all clear how you get them and also I saw between Christmas and New Year home PCR tests had run out anyway in Scotland. We've only had one post since the 3rd so assume Royal Mail staff hit by covid.

Very sorry you've failed with 3rd primary vaccine - not an even playing field across UK. I've been lucky just to have had 4th one but like your son had a very unpleasant reaction just wearing off after 48 hours. Odd as only the half dose of Moderna - the full dose in October flattened me fatigue wise for 12 hours but this was much worse - glad to have had booster though as friends and neighbours going down like ninepins. Best wishes Diana

[EleanorPV in reply to DJK12]

My friend booked his own PCR test and when it came back positive contacted his health board. He received a call back within 30 mins. He was on day 4.

I've just received my call to investigate the true risk of the 3rd vaccine for me. I will know more on Tuesday fingers crossed.

[EleanorPV in reply to EleanorPV]

I haven’t heard of any of my local haematology group receiving letters or PCR tests to keep at home.

[DJK12 in reply to EleanorPV]

Reassuring they called back so quickly. I guess home PCRs may have been put on back burner with the surge in cases and shortage of test kits.You have been on the journey to find out if the vaccine is safe for you a long time. Hope you get some decision on Tuesday - very stressful for you. Hope also your son begins to recover soon. Diana

[EleanorPV in reply to DJK12]

From speaking to my local haemo group. looks like only those on strong chemo have a letter from the government. We can still phone but the decision will be made firstly by a pharmacist and then by the Covid consultant

[DJK12 in reply to EleanorPV]

Any progress with the risk level? Diana

[MWxxxx]

Hi. This is great news but I am confused as Blood Cancer Uk also updated their website about antivirals and treatments and are still saying that MPN patients don't qualify - so we have mixed messages. Like many people here I have not had a letter or PCR to keep at home despite having PV and being on hydroxy. My GP has ignored my request to be added to the list of those who qualify. My main concern is that now people without symptoms no longer qualify for a PCR test, so if someone in my household tests positive I cannot access a PCR until I start to get symptoms myself, despite maybe already having the virus. By the time the results came through it is likely I would have passed the 5 days when those drugs would be the most effective.

[EleanorPV in reply to MWxxxx]

The drugs are not without some nasty side effects for some. If you don't have symptoms then the vaccine and your immune system are doing well. I do understand the stress as none of us know how our bodies will cope or if our bodies will cope for a few days and then struggle. Stay safe.

[jointpain]

As MWxxxx just said. If my wife has symptoms of covid, by the time she had a PCR test and got onto those that might prescribe the antiviral meds it would by my calculations be in excess of six days. I have looked at getting a PCR test in for when, and I hope it never happens, she succumbs to COVID. Due to her taking hydroxycarbamide, Anagrelide having very low leucocytes, and no spleen. I feel she should have a PCR test in reserve. Unless I lie and say she has symptoms she cannot get one.

[AndyT]

Thanks Maz - that’s good news even if we hopefully don’t need these meds - it’s reassuring to know they are available to us if needed…Happy New Year!

[Bridie123]

Thank you Maz, I was wondering how I stood on this matter

[rearwindow]

Hi Mazcd do you know if this antiviral medication is available in N Ireland?

[Mazcd Partner MPNVoice in reply to rearwindow]

hi rearwindow, sorry for the delay in replying, yes they are see details here:health-ni.gov.uk/news/healt...

[Plavers]

Thanks for all that info - I had Covid over Christmas and my wife did EVERYTHING to try and get me anti-virals but because of GPs surgery being unavailable for four days and 111 clinician rang and put things into motion sending referral into St.George’s and Westminster hospital - after some confusing calls asking for someone with a different name, but by the time it was actioned I had overrun the 5 days and so was ineligible. So be quick!

[HazeBlue]

I’ve been sent the priority test kit . Reassuring to know if we get a positive result they’ll get the drugs to us, Nhs are looking after me well. Et jak2+ . Thank you NHS. You have made my MpN journey easy. This forum is very useful too. Stay safe everyone.

[harleydavidson]

Hi Maz . Should we all have had a letter and test. I’ve heard nothing. PV on hydroxy. Thanks Mel x

[Mazcd Partner MPNVoice in reply to harleydavidson]

Hi Mel, many people with MPNs should have received a letter, but we are aware that many haven't, this will tell you what to do to order a priority PCR test kit if you haven't been sent a letter:

mpnvoice.org.uk/news/fast-a...