Turned down for antivirals

[anapurna]

After being up all night saying the same stuff to 111, various GPs and even a paramedic team to my home at 3.30am I have finally been turned down by CMDU for antivirals as I am on watch and wait. I now have only a couple of days before the 5-day rule prevents me for getting the drugs. Any ideas welcomed! Feeling pretty anxious now, especially as a friend also on watch and wait got his antivirals delivered the next day.

[annabelle63]

I’ve never heard of anti virals. Could I ask you what it is

[anapurna in reply to annabelle63]

I understood that people with CLL testing positive for covid would be offered antiviral treatment to prevent them from becoming seriously ill and going into hospital.

[annabelle63 in reply to anapurna]

Never heard of this. I know one can get vitaminC with a drip which is fantastic. You could ask about that which I’m sure comes with a cost.

[AussieNeil Administrator in reply to annabelle63]

This post covers COVID-19 preventative measures, including anti virals. IV Vitamin C is not included.

healthunlocked.com/cllsuppo...

[LeoPa in reply to anapurna]

Can you buy Paxlovid for cash?

[Doremefasol in reply to anapurna]

Yes ,they have to be offered.

[MovingForward4423 in reply to annabelle63]

In the U.K. we get access to antivirals for covid. There are a few that are approved. You need to meet a certain criteria to get them.

[annmcgowan]

Hi it is my understanding that people with CLL in the U.K. testing positive with COVID are entitled to receive antiviral medications from their local CMUD. I received a government letter about this and spoke to my CLL specialist who confirmed. I also telephoned my local CMUD for advice snd they confirmed this to be the case citing their government guidelines too. Looks like you need to go back to them about this. I would contact my CLL team and my GO for advice and support in your circumstances. Let us know how you go.Good luck

Ann

[anapurna in reply to annmcgowan]

Thanks AnnThat’s my understanding too. How do you track down the local CMDU? None of the links given by folk on this site work.

[Newdawn Administrator in reply to anapurna]

Here’s the CDMU directory link. However, when I had Covid, they didn’t take calls direct…they contacted me.

england.nhs.uk/coronavirus/...

Newdawn

[RosettaClapp in reply to annmcgowan]

the access is to being considered for treatment not definitely get treatment sadly

[annmcgowan]

Hi I only knew where mine was due to a friends daughter getting antivirals with onset of covid.Ann

[country76]

They must be talking about Paxlovoid which is given within the first 5 days of positive Covid. That is what my doctor is going to give me. I would imagine it would be hard if you have an asymptomatic Covid. Which I had and not realized it.

[stevesmith1964]

Remember, the 5 day rule only applies to primary care, after 5 days the antiviral responsibility moves to acute care.

[johnwhitnall]

I have been on Acalabrutinib for approx 18 months, I was also refused the antivirals on the grounds of I might have been positive for 5 days. I was told to stop my meds for 10 days. I have raised lymph nodes in my neck , groin and under arms. My 10 days are up today and I am expecting a call from the nurse,hoping for some meds to reduce my swelling, I remain positive and think I am past the worst of it . If you have had your jabs and are generally well, I think and hope you will be fine. Good Luck

[Arranbud]

I am on watch and wait in Scotland. I received a “Higher Risk” letter in December. I tested positive for Covid last Thursday. The letter contained a phone number for the local Health Board Covid Service (Ayrshire and Arran). After my initial call, I was phoned back and asked about my symptoms (cold like), given some information about possible options and told that my information would be passed on to a doctor. Next day (Friday) a nurse phoned back and asked me to come to Crosshouse Hospital to pick up Paxlovid tablets.I feel that for me the system has worked pretty well. Good luck to anyone else in a similar situation.

[MovingForward4423]

That’s odd because you have blood cancer. You need to contact your GP and ask them to refer your urgently. Make sure your over emphasis your symptoms!

[Flowers60]

I also had a positive LF last Thursday, sent off priority PCR got positive result on Friday. Telephone call with GP who agreed I was eligible for antivirals who sent message to CMDU and they responded that they would contact me on Saturday. Still no contact but luckily I am on the mend otherwise I would have called 111I hope you are feeling better soon, sometimes it’s hard out there trying to advocate for ourselves especially when you are not feeling well. There definitely seems to be a communication problem with regards to who is eligible for these drugs. I agree try your CLL specialist and GP’s again-nothing to lose. Good luck 🤞

[anapurna in reply to Flowers60]

I am appalled by your lack of treatment. This must be a case for a class action.

[RosettaClapp in reply to anapurna]

the access is for consideration for treatment not not for definite treatment ,,the CMDU decide and thats the final decision as far as I can see

[annmcgowan in reply to RosettaClapp]

I guess they fell some of can do without treatment, more likely short supply is making them priorities!!! that’s not good to hear and something that needs addressing. Take care.Ann

[sparkler in reply to annmcgowan]

Ann, I don’t think there’s a shortage of anti-virals but there isn’t any mention of Sotrovimab or Evusheld. The system’s still shambolic, arbitrary and a postcode lottery as far as I can see.

Take care

sparkler x

news.sky.com/story/covid-vu...

[annmcgowan in reply to sparkler]

Thanks for letting me know I will be on guard if I ever need treatment for covid. Take care

Ann

[sparkler]

What happened to Sotrovimab? Is that no longer an option? That we’ve had 3 primary doses and 1 booster, but the 3rd primary dose is recorded as a booster won’t cause any confusion will it? That we might be on W & W also won’t be a problem, despite the guidelines stating that we’re all eligible for assessment no matter at what stage of CLL we’re at won’t be another issue... So, no room for confusion and it’ll all run smoothly for us... 🙄

I hope you get access to therapeutics asap, anapurna and feel better with a less anxious day.

Wishing you all the best

sparkler x

[bennevisplace in reply to sparkler]

Sotrovimab was the last monoclonal standing, in the era of Delta and Omicron before the BA.2 variant reared its head. Antivirals seem to maintain efficacy and Paxlovid being a pill is easier to administer.

[bennevisplace]

You qualify for immediate treatment with an antiviral or a monoclonal antibody reserved for those at high risk of progressing to severe Covid. The antiviral Paxlovid seems to be the treatment of choice at present.

Every CLL patient who tests positive qualifies, regardless of stage of disease or treatment status. Being on watch and wait does not make a jot of difference.

The doctor making the decision to deny you the approved treatment is risking their career with that decision and they need to be told so, in writing. Email and phone call to confirm receipt. Act fast.

[anapurna in reply to bennevisplace]

I agree. Problem is the bitch who put the phone down on me was from an unidentified number and didn’t give her name. My GP agrees I am eligible and now waiting for a call from the covid team. Hope it’s not her again!

[bennevisplace in reply to anapurna]

Keep pushing, and good luck.

[scarletnoir in reply to anapurna]

Very, very bad treatment... I hope you get those antivirals, and soon!

[anapurna in reply to scarletnoir]

Been waiting all day for a so-called ‘urgent referral’ made by my GP this morning plus a similar referral made by my haematologist. I guess that covid numbers are now so colossal and supplies are so low that covid agencies are just waiting until your 5-day window is closed and they can ring you and say you’re too late……just hoping my pathetic immune system keeps on doing its best.

[scarletnoir in reply to anapurna]

I do hope you get those antivirals - the sooner, the better!

[Tingy]

I’m on watch and wait and I was prescribed Paxlovid a few weeks ago. I went through 111 for mine as I had no luck going through the conventional channels. Good luck and hope you manage to be prescribed it. I understand it’s prescribed for patients who suffer from mild to moderate symptoms of Covid. Take care.

[Pin57]

The Wait n Watch term needs to change to Monitoring Immune-Compromised (MIC). Folks making life-threatening decisions on our behalf must think W&W is like sitting at a beach waiting n eventually watching a sunset? W&W gives a wrong impression of CLLers immune system condition.

Your situation is very unfortunate, hope smarter minds come to your aid n you get the anti-virals!