RONAPREVE

[neddyseagoon]

ARE THERE ANY MOVES TO GET RONAPREVE INTO OUR ARMS BEFORE WE GET ILL,SEEMS LIKE A NO BRAINER TO ME!!AND WHAT ABOUT MOLNUPIRAVIR BOTH NEED TO BE GIVEN QUICKLY BOTH WOULD WITH LUCK KEEP US OUT OF HOSPITAL AND BY CONSEQUENSE SAVE THE NHS PRECIOUS FUNDS.I WOULD WILLINGLY PAY UP,

[PaulaS Volunteer]

Well said, NeddySeaGoon. I think that's the question on all our minds (in the UK).

I've heard that some of the leukaemia charities are pushing for answers to this. Let's hope some action will soon be taken...

Paula

[neddyseagoon in reply to PaulaS]

WE AND WE ALONE KNOW HOW COVID HAS AFFECTED OUR LIVES, TO HAVE TO GO INTO HOSPITAL PROVE YOU HAVE COVID AND NO ANTIBODIES BEFORE YOU ARE CONSIDERED FOR MONOCLONAL ANTIBODY TREATMENT IS STUPID AND WILL COST NHS WITH EXTRA EXPENSE AND LOST LIVES.WETHER THE POWERS THAT BE WILL WAKE UP I DOUBT.I AM FRUSRATED THAT WE AS CLLERS AND OTHER IMMUNOCOMPRIMISED APPEAR IN THE MEDIA AS SAFE BECAUSE OF NEW DRUGS,BUT WHY SHOULD WE JUMP THRO HOOPS TO GET THEM, SURE THEY ARE EXPENSIVE BUT WITH THE CURRENT GOVT SO PROFLIGATE WITH OUR MONEY HAVE THEY GOT NO CONCIENCE.THEY HAVE BEEN WELL AND TRULY RIPPED OFF BY MILLIONS BY CROOKS IN THEIR BUSINESS SAVING SCHEMES.WHAT ABOUT US!!

[Annie1920 in reply to neddyseagoon]

Sadly I think it's them doing the ripping off

[ygtgo]

Sounds like common sense ....

Unfortunately though ... common sense and 'officialdom' are seldom observed together .

[UKfulloflife]

This issue was raised when Ronapreve was approved for use. Apparently it is extremely expensive, and is therefore reserved for those who do actually contract Covid, and at the present time is only for use in a hospital setting.

[onu1tadi2 in reply to UKfulloflife]

Pretty well all drugs are expensive.

[UKfulloflife in reply to onu1tadi2]

My understanding from the article (which I now can't find!) is that this one is super, mega expensive which is why availability is currently restricted to the sickest Covid patients. I believe there is an oral drug that has now been licensed for immunocompromised patients in the early stages of Covid. That's something at least, although like everyone, I had hope that they would give us Ronapreve prophylactically. Heyho.......

[Eucalyptus22]

I've been told by my cancer nurse that Ronapreve will only be given when you get hospitalised, test positive for the spike protein and are proper poorly!! Seems a bit late for my thinking. I'm planning an action plan whereby I will ring my 'emergency contact number' so my medical team are alerted asap so when I do land in hospital they will be aware of my medical situation. I'm also asking my GP for a letter outlining my medical history and that I have no antibodies. My thinking is that it would just be my luck to land in hospital at a weekend and no-one from my medical team to consult with.

[Annie1920 in reply to Eucalyptus22]

I landed up in hospital with suspected sepsis and in spite of reference from consultant plus a card which I showed to admission nurse I got no treatment til the evening.. 14 hours later grrr

[Eucalyptus22 in reply to Annie1920]

Sorry to hear about that. Not good and its exactly what I'm afraid of. Hope you are fully recovered now. Not sure what else you could have done to help yourself.

[Annie1920 in reply to Eucalyptus22]

The medic visited in the evening and called the nurse in charge into the office and apologised but luckily it wasn't sepsis... But it shook my faith in the card system

[PaulaS Volunteer]

I can understand how Ronapreve is expensive and reserved for people who actually contract Covid. But why make them wait till they're so poorly that they're already hospitalised, before it can be given? Apparently Ronapreve works much better when given early after diagnosis!

It's an infusion so has to be given in a hospital/clinic setting for a few hours, which would add to the staff and finances involved. But money and staff hours could be saved if people were treated earlier and didn't need longterm hospital admission. LIVES would be saved too...

There are also psychological implications of this. If I knew I could get treatments like Ronapreve and Molnupiravir quickly if I tested positive for Covid, I would feel much more relaxed and positive about my future...

Paula

P.S. Apologies for getting worked up about this. I keep reading about CLL patients in America getting these treatments easily, but it's very different for people in other parts of the world.

P.P.S. I realise that in the UK we are better off than many countries, with our free access to most of the latest drugs. So I'm grateful for that.

[AnneHill in reply to PaulaS]

I couldnt have described it better myself. When my consultant told me to go to A&E and covid patients would be separated it wasnt what I expected to hear.I feel just like you. Maybe we need tshirts with immunacompromised on. I realised when I went for my 3rd jab that the doctors were full of old people queuing and nobody would know that I was probably in more danger than many of them.

My Mum is in a carehome. She is 88 and last year survived covid. I dont think I would survive and now my optimism has disapeared. We sold concert tickets and now 2 more family gatherings have cropped up.

I feel so miserable knowing that I will be like a needle in a haystack. Anne uk

[Annie1920 in reply to AnneHill]

My experience of taking my wheel chair bound husband for his booster was awful.. The volunteer at the gate was abusive when I asked him to back away from the car window, the queue was long and outside then the after jab 20 mins was spent in a room far too crowded together with little ventilation.. I think we were lucky not to pick up anything

[AnneHill in reply to Annie1920]

I was shocked when I saw the queue outside the doctors. I had the remains of a urine infection but decided to have the vaccine. I was horrified and told the man in the doorway that I needed to keep my distance. He said they couldnt understand why there were so many people and thought people thought that they could just turn up. I was a bit stroppy. The nurse was short with me. What time was your appointment she said. I was due 15 minutes before. When I went out of the room and needed to wait I looked at all the people and said I would wait in the car.

Later I wondered if I was getting looks because I am probably 20 years younger than most other people.

My friends husband went the following week. There wasnt a queue and the nurse did hers as well. The regular nurses are really nice. My husband went to a drive in vaccine centre. He still hasnt been contacted. Thankfully we havent picked up covid. I know how you feel. Its nerve wracking when we are so careful and we expect others to be careful too. Anne uk

[Annie1920 in reply to AnneHill]

Just so annoying when we have been so very careful (for good reason) to be un necessarily exposed to infection in a medical setting by badly trained volunteers..

[AnneHill in reply to Annie1920]

I was shocked! They couldnt understand why there were so many people. Story of our lives.

[onu1tadi2 in reply to AnneHill]

I love your t-shirt idea!

[AnneHill in reply to onu1tadi2]

I will think about that. I felt like I needed a banner when I went for my jab. We dont look like we are any different. Christmas present?

[Annie1920 in reply to PaulaS]

Keep safe til after Christmas and hopefully the tablet antiviral will come on line.. Its been ordered evidently

[ygtgo in reply to PaulaS]

When you think of the billions that the governments have frittered away with their 'scatter gun' approach to covid, a Ronapreve plan would be worth considering seeing as it would be a targeted policy.

Unfortunately, scatter gun policies from scatter brained politicians seems to be the norm ...

[Fran57 in reply to PaulaS]

I wholeheartedly agree. Great that the CLL charities are working hard on this.Stay safe,

Fran 😷

[bkoffman CLL CURE Hero]

The issue is more the short supply and the staff to administer it. CLL Society and other charities are working hard to help remedy this internationally.

[Handley]

Coincidentally, I wrote the following to the CLL Society yesterday:

Dear Support Team

I was diagnosed with CLL in 2018 and completed treatment (obinutuzumab and chlorambucil) in March last year. So far so good!

I belong to the CLL forum in Health Unlocked and am aware that Molnupirivir was approved by the MHRA on 4th November and that Regeneron (Ronapreve) was also approved on 20th August, for use by those with compromised immune systems due to (amongst other things) blood cancer.

I also understand that both of these potentially life saving drugs have to be administered within 3-5 days of infection to stand a chance of helping the patient.

Given that it could take 3 days to receive the results of a PCR test, can you advise me how I should then proceed to get the drugs prescribed and administered in time to ensure that the treatment begins in time to be effective? I need to know what to do now so I am prepared for what would be an emergency situation.

Please can you tell me the correct protocol for this? Who should I contact and will that guarantee an appropriate response from people who understand about the danger Covid presents to those with CLL?

Very many thanks

etc

It will be interesting to see if they are able to help.

Best wishes - Handley

[Annie1920 in reply to Handley]

Do please keep us in the loop with their reply

[Lawand1]

My understanding is that Molnupiravir will be imminently a available in the UK. Should be a game changer so long as we get access to it very soon after being tested positive.

[AnneHill in reply to Lawand1]

I was very optimistic when these new treatments were agreed. When I spoke to my consultant about the protocol for getting this treatment I was very despondent. He just said the A&E team would deal with this and would treat as required. Hopefully blood cancer charities can help. Anne uk

[Lawand1 in reply to AnneHill]

Don’t be despondent, they have to treat the individual so it would not be medical protocol to say “yup you’ll get it.” They really need to assess you when you get there. However it is readily available and very effective….you’ll be fine should you need it.

[AnneHill in reply to Lawand1]

I just wanted to be told they have it. Thats what my husband said. He said they wouldnt tell me.

[Lawand1 in reply to AnneHill]

It’s available (UK)

[AnneHill in reply to Lawand1]

I need to get my antibodies checked. Its unlikely I will have any. I need ivig every 4 weeks and take ibrutinib. I havent checked out where to get the test yet. Anne uk

[stevesmith1964]

HiRONAPREVE , like many monoclonal treatments is expensive due to the production process. Thus it would not make any clinical or financial sense administer the drug to those people without antibodies unless they are fighting a covid infection. I was given Ronapreve 10 days into my 2nd Covid infection as my breathing was becoming affected but my SATS were still at 97%. I was admitted to hospital for the treatment and was kept in for 2 days , my breathing improved within 12 hrs. The main reason I was kept in for 2 was the fact as I am on acalabrutinib by Platelets on the low side of Normal and Covid had pushed my Platelets due to 60 so I was treated .for low Platelets and monitored for PE. Apparently its very common in Covid patients that Platelets are lowered.

I have checked for antibodies and they disappeared about 30 days post infusion, thus another reason why it not value for money to administor the drug without a clear clinical need, I.e breathing issues with a covid infection

[morepork]

Not an answer to your question but another question. Are you perchance a Goon Show fan?

Kia ora from NZ

[1962jns]

Is ronapreve the same as regeneron?

[Lawand1 in reply to 1962jns]

Pretty much