Getting antivirals UK

[camper2]

Hi looking for information and help.

I have been in contact with someone who has tested positive for covid (LFT positive and PCR test to follow).

I knew my CLL consultant didn’t know of any protocol within the hospital for the use of antivirals with the immunosuppressed so I rang the hospital pharmacy today - they don’t know any more either.

Does anyone know if other hospitals are giving antivirals to patients? If so what antiviral?

Does anyone have a web link I can send the hospital to update them on current protocols on use of antivirals?

I’m on Acalabrutinib, have had 2 jabs followed by covid infection and a test that was negative for antibodies. I have since had the the 3rd jab too.

Obviously with my history I am concerned- and I have been so careful too!!!

[JigFettler Volunteer]

Hi! I asked my Heam Consultant this question - and she did not know! Told me she does not look after Covid patients... Said she would chase it up - but have not heard. That was Mid Sept. I am waiting for my CNS to call me - I wanted to give them a nudge in this respect.

Has anyone in the UK established a route to available early treatments if we get caught by Covid infection?

Jig

[Walkingtall62 in reply to JigFettler]

Hi, I was told that if Covid is mild, to stay at home like everyone else. If it gets worse, to go to hospital where I would be administered antivirals. I didn’t ask which hospital, as the one I attend doesn’t have an A&E. Food for thought. Thanks

[camper2]

The trouble is that there are several hurdles that we have to get over before we can get treatment with Ronapreve or the like. NICE say that we have to have a Positive PCR test, be immunosuppressed, have a negative Antibody test and be admitted to hospital (in patients and/or out patient it’s not clear?) before we can access the monoclonal/antibody treatments.

That’s a lot to get through when the drugs work best if given in the first 4 days of infection. My concerns are that time will be lost if staff are not familiar with what the protocol is. What happens over a weekend? We could lose 2 of those precious 4 days if unable to access the necessary tests prior to treatment.

[Annie1920]

I understood the idea was to keep the likes of us out of hospital and that at the first sign of infection we are to be given antivirals at home...

[Indoorbowlers in reply to Annie1920]

Like you, I thought keeping CLL patients out of hospital would be the aim with Ronapreve, so I asked his haematologist at his latest telephone appointment; unfortunately he had no idea what I was talking about ... he knew about the prophylactic trials but nothing about Ronapreve. Give him his due, he did look into it - then came back and said it is only given in hospital, once they have ascertained that the patient has zero antibodies. So, given that his original advice was to keep an eye on his temperature and oxygen levels, and only get him to hospital if oxygen dropped, it seems unlikely that it could be administered within the desired early time frame. I know it’s an expensive treatment - but it must be cheaper than potential hospital care? It seems to follow the usual pattern we have seen during this pandemic: announcements made with big fanfares but very little detail on the logistics eg the Third Primary Dose. I was excited when I heard of the anti-virals the Government has ordered, because the inference was it would be easy to access them at an early stage (I heard January mentioned in one interview?) so I really hope this isn’t going to prove another letdown. It’s as though once the relevant drug/vaccine has been ordered the government wash their hands of it - and nobody picks it up!

[PaulaS Volunteer in reply to Indoorbowlers]

Just what I'd been thinking, Indoorsbowlers... VERY frustrating.

I'd hoped having more effective treatments to hand when needed, would be a gamechanger and allow us a little bit more freedom, but it seems not...

Paula

[Root65]

My consultant l said at this stage we wouldn't be treated any different to any other patient until there is a positive test and have to be admitted to hospital. He said that might change in the future. If I become poorly from covid I will be going to hospital at the first sign of difficulty, so they have time to figure out what their going to do with me. Fingers crossed your not going to be in this situation.

[Harvist]

I would love a link too. I have spent many hours searching for procedures that are actually listed with individual hospitals or via the NHS. There are suggestions from government but no-one seems sure about the process or if the appropriate medication will be available.

The reason I went through many individual hospital's info is I had a problem after an eye operation. My local hospital had no weekend emergency contact and I had to ring another, 30 miles away. They gave me some advice but had no access to my records so couldn't offer the help I needed. Also their general advice was radically different from what I had been given. I was told that "all consultants follow different protocols."

The point of that paragraph is that unless we know exactly what to do when we come into contact with a covid carrier, or feel we have early symptoms, the labyrinthine maze we will need to negotiate could be the death of us. All the evidence from the US where antivirals are more freely available, suggests that treatment is best in first 3-5 days.

A weekend in England, with 12 hour A&E waits and unclear procedures could be deadly.

If anyone finds the "route" to take, clearly set out, please let us all know.

[Etheldreda]

This is such an important question and nobody knows how to get the Covid drugs before it's too late. Ronapreve and Molnupiravir are in very short supply. They are difficult to make and most hospitals will not have any. I think Luton and Dunstable hospitals have given Ronapreve to 7 people in the last month, so they have some protocol in place, and some access to a supply of Ronapreve.

My consultant at Guy's/ Kings in London was equally dismissive, JigFettler, when I asked how to access the drugs within the optimal 4 day window. And no response to emails to him, CNS and head of Guy's St Thomas' except lovely CNS emailed back that people are given antibody tests upon admission for Covid to see if they qualify for Ronapreve. There is no protocol to get us into hospital earlier than people with fully functioning immune systems so that we can get the drugs within 4 days of testing positive or symptoms starting.

I'm on V&O and the obinutuzumab crushes b-cells and t-cells, so I know that I have nothing to fight Covid with. Everyone on those drugs will need Ronapreve or Molnupiravir to survive Covid.

Good news is that I know of five people on Active Monitoring with CLL who have had Covid and are now doing fine!!

[Annie1920 in reply to Etheldreda]

Me too on O+V and my nhs antibody test came back negative after 3x jabs.. I understand that the antiviraltablets to take at home won't be available til after the new year.. So more same old same old for us I think

[Etheldreda in reply to Annie1920]

Hi Annie1920, yes - same old same old and don't count on getting any of the new drugs. I am more careful than ever now. It is a little soul destroying to hear the big announcement and get my hopes up for a normal life, and then sink lower when realising that it would be a miracle if any of us actually got the drugs in time.

[bennevisplace]

Camper2, you and Harvist have articulated my own concerns about the deployment of Ronapreve in practice.

Two weeks ago I asked my haematologist 1. if the hospital had a protocol for treating immunocompromised Covid patients, to which he replied "no, if there was I would have written it" and 2. did the hospital have any Ronapreve, to which "don't know".

I fear it may be a question of too many hoops to save stocks, too little know-how to save lives.

[bennevisplace]

I have now written to Blood Cancer UK about this. Let's see what transpires.

[Annie1920 in reply to bennevisplace]

If anyone can get some answers BC will

[bennevisplace in reply to Annie1920]

🤞

[AnneHill in reply to bennevisplace]

No doubt most of England will have seen on the news that ambulances were queuing outside my local hospitals and numbers of covid are going up. There are no free beds and people in ITU are mounting up.

Next Tuesday I am due a phone consultation. I have my blood taken tomorrow.

When I asked the haematology consultant about drugs and procedure I was told A&E would separate covid patients and treat as appropriate. He didnt know what they would do!

Hopefully my blood will be ok and then I will tell him how I feel. I dont believe they dont know about covid treatments for cll patients. They clearly havent got any.

I will tell him that I was hopeful that treatments would be available and now I have come to realise that I will be in trouble if I get covid. I cant stand the thought of going to A&E.

Lets hope you get an answer, Anne uk

[bennevisplace in reply to AnneHill]

Anne, I understand your anxiety about Covid, especially as (on paper at least) you're one of the more vulnerable CLLers, currently in treatment. I really think our specialists should be doing more to support us in this.

Yesterday a radio interviewee said that ambulance queues at hospital were mainly down to a surge in non-Covid cases, i.e. patients with conditions that had worsened after months of delayed consultations and treatment, plus bed-blocking by residents of care homes affected by staff shortages. If this is so, there is going to be no let-up any time soon and hospitals will continue to be under pressure however Covid trends.

The official stats coronavirus.data.gov.uk/det... do show a decrease in Covid admissions in the past week or so, which may or may not be a short-term effect of English schools' half-term (ended 1st November).

I hope it goes well for you next week (my appointments are always on a Tuesday too).

PS the comment by Eucalyptus22 below is useful.

[Eucalyptus22]

Just checked on Blood cancer uk website and they suggest we have a letter from our hospital or GP to show our diagnosis and our medical department details. I am going to follow up on this to ensure that the results of my negative antibody tests are included in the letter. The website also have a downloadable medical card that you can fill in and take with you if you get covid. On it you can ask them to contact your medical team to get further information on your treatment.

The state the NHS is in at present is a very scary prospect for any of us getting covid.

[AnneHill in reply to Eucalyptus22]

That is really good advice. I will make a list to request from my haematology dept and sort your other ideas too. Thankyou, Anne uk