Tested positive but denied antivirals or mAbs

Well the inevitable happened, and after 2.5 years of shielding (I was shielding pre-covid due to immune issues and sepsis during chemo), I finally tested positive this weekend.

I’d received notification back in January, and again earlier this week that I was on the list of people eligible for antiviral/antibody treatment should I test positive. I received a call from the CMDU just within the promised 24hrs to do an initial triage, and then was contacted by a doctor later that day. Unfortuantely, he said the criteria were very strict, and the stocks were very low, so they were prioritising the most vulnerable, and because my Hodgkins treatment finished 2 years ago, I was no longer eligible. He was apologetic, but said he didn’t have any flexibility.

I’m not going to make a big fuss about it. I don’t doubt that they’re having to make tough decisions about who gets these drugs and I certainly wouldn’t want to take a dose that someone else would benefit from more. The doctor who phoned was a consultant immunologist, so I don’t doubt his opinion on this. I’m curious though what other Hodgkins survivors have experienced? The position seems very unclear about the long term immune suppression suffered after Hodgkins (and high-grade NHL). There is no black and white answer and I think this often means we fall through the cracks. In this page on Lymphoma Action website, they sum up the situation well

There is limited scientific evidence to guide decisions on exactly who is at high risk of severe disease from COVID-19. Public Health England recommends that anybody who has had treatment for lymphoma is considered higher risk but does not give a time frame for how long ago the treatment was.

A consensus of UK lymphoma specialists agree that it is sensible for people who have low-grade non-Hodgkin lymphoma to take precautions to lower their risk even if they have not required treatment for many years.

If you were successfully treated for Hodgkin lymphoma or high-grade non-Hodgkin lymphoma many years ago and your lymphoma has not come back, the situation is more complicated. Your GP or specialist will consider lots of factors to help determine if you might be at higher risk of serious illness due to COVID-19. This includes:

  • the specific type of lymphoma you had
  • how long ago you were treated
  • the exact treatment you had
  • any late effects of treatment you might be at risk of
  • any other medical conditions you have
  • your individual circumstances (for example, your living situation or your occupation).

Your GP or specialist will offer advice that is specific to you.

This situation puts people like me in a bit of a grey area - not knowing how big the general covid risk is to us, not knowing whether we’ve been unfairly denied antiviral treatment etc. These grey areas are not compatible with the strict checklist that the CMDU go through with you.

I also wonder how much of this is just because the NHS didn’t buy enough of these treatments. From what I can tell, people like me would be eligible for these treatments in other countries. Maybe if there was more stock, then borderline cases like me would be included.

Anway, I’m off to try and treat it with the next best option available to me - Lemsip and all of my asthma inhalers…

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Hi @Muppet

Really sorry to hear you’ve got covid, and that just when you need some reassurance and help at a time when you’re not feeling your best, you get a knock back like this. I really despair sometimes at how us blood cancer patients are being treated during the pandemic.

I’m afraid I have no knowledge of Hodgkin lymphoma criteria for the covid meds, or the criteria generally - they seem incredibly specific and complex. I have just been surprised by the news myself (from my stem cell transplant consultant) that I am no longer eligible for covid antivirals or antibodies when I get covid, because I am now over a year post-transplant. Even though I’ve had three different immune suppressing treatments in the last 6 months (steroids, rituximab and a donor lymohocyte infusion.) Yet my Acute Myeloid Leukaemia haematologist says I am entitled to them. If these two consultants understand the criteria differently, are you certain this immunologist was correct? Would it be worth going through the triage again in the hope of speaking to someone else?

It may also be worth checking with the helpful @GemmaBloodCancerUK and @Alice_BloodCancerUK.

I hope you’re not feeling too unwell, @muppet, and that the lemsip helps stave off some of the symptoms. And I hope you’re not having breathing difficulties, if you’re needing your asthma inhalers? I would have thought that in itself would have concerned the consultant enough to at least signpost you to some alternative help? And surely adding asthma to your medical profile makes getting the antivirals/bodies even more important? By the way, do you think your breathing requires medical assessment/support? Please don’t hesitate to get it checked out if it’s worrying you.

Take it easy, and all the best.

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So sorry to hear this @muppet - may I ask how you’re doing and whether you have spoken to your haematology team/GP about the CMDU’s decision around this? If not we would really encourage you to keep them updated with what’s going on and how you’re feeling.
Please don’t hesitate to give us a call on 0808 2080 888 if there’s anything we can do to support you. Alice

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Hi @muppet 2 1/2 yrs shielding and then you test Covid positive that is really tough.
How are you feeling and I expect you have to be extra careful having asthma?
I cannot comment on the conflicting CMDU advice you were given.
Do you have any support from family and friends?
Look after yourself and if you feel worse please do ring 111 or if you get really ill and cannot breathe your GP or 999.
Please keep posting if you feel up to it.

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An excellent article in today’s Independent highlighting the problems concerning access to antivirals.

The NHS spokesperson they quote is downplaying the whole thing saying it’s working well for most people.

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Thanks @Frankdb I will look up the article. Look after yourself

Thanks for all the replies.

Interestingly, I got a call first thing this morning from the same consultant. He’d clearly been thinking more about my situation, and had changed his position. I didn’t do anything to make that happen - he literally just reflected on the guidance and changed his mind.

So, after a long discussion about the potential drug interactions and issues, he prescribed me a course of Paxlovid which was delivered quickly and I’ve started today.

It’s nice when things just turn out well like this without having to fight for it, and despite the criticism the NHS sometimes gets, I can’t fault the service I received in this matter. The consultant had clearly spent time reviewing and reflecting on the guidance and proactively got back to me.

Hi @muppet 2 1/2 yrs shielding and then you test Covid positive that is really tough.
How are you feeling and I expect you have to be extra careful having asthma?

Yeah. It’s a bit demoralising having been so careful for so long, but with covid ripping through society and me having school-age kids, it was inevitable I guess. At least I delayed it long enough for things like vaccines and antivirals to be around to reduce the risk compared to if I’d have caught it 2 years ago.

The most demoralising thing is realising that catching it is by no means the end of the saga. Now that we know covid re-infects so easily, this is probably the first of many encounters with it, not the last…

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Wow, that shows you that the consultant did reflect and was able to change their opinion, I am impressed. Yes, the good old NHS.
The main thing is that you look after yourself now and get better, who knows how Covid will be in the future.
Please keep posting how you are.

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@Muppet, that’s great news! A real turn up for the books, too, the consultant reconsidering and ringing you back. That really is good, reflective practice. It’s a shame the criteria for receiving the meds have been made so difficult for consultants even, to be able to easily and consistently assess patient eligibility. That’s not their fault.

I hope you’re not feeling too bad with the covid, and that you’re on the mend soon.

I’m in the same boat re shielding and a school age child, and inevitable infection. I think I’ll still try to get hold of the antivirals/antibodies when I get infected, in the hope that the consultant who said I’m no longer eligible, has misinterpreted the criteria, or that whoever I speak to interprets the criteria more loosely.

A speedy recovery to you.

All the best.

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@muppet
Glad to hear your the CMDU consultant reflected and called you back . . . after a long day of phonecalls, I also finally got prescribed Paxlovid, having been told twice that I wasn’t eligible (even though my Haemotology team had recommended I should have the treatment). The CMDU contracts seem to have been let on a very ‘hit and miss’ basis - the people who called me weren’t consultants, it was just a call centre following a set of criteria/tick list without access to any medical records. These treatments are available, but like with many other aspects of Covid management, the system for deployment hasn’t been set up with any degree of consistency or, it seems, in partnership with GPs and hospital teams. On a more positive note, I’m going for my 5th jab this week . . . armed with all the paperwork I’m sure they’ll want to scrutinise!!
Hope you’re feeling better soon.

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Hi @muppet, I got Covid in early March, contacted the number given after the positive test and was told I’d be contacted in 24 hours (It was a Friday). By Monday I’d heard nothing, I phoned my GP surgery and the receptionist said she’d never heard of any treatments for Covid and basically put the phone down on me. I sent my GP an email with all my info and called the next day and was told they would call me back, they called the following day (so Wed) - by now it was getting late for any treatment, I called my cancer specialist and they tried to help but as I wasn’t at home (as we were away elsewhere in the UK isolating at a family members house - since before I got Covid -as they were stuck overseas) it was basically too difficult to get meds and I fell between the cracks for various new trial medications (age etc). Long story short I got better on my own. I don’t think I was in the high danger group (NHL - early stage, no treatment yet + another cancer I’m under observation for for remission after surgery in 2020). I suspect I will get it again, and I hope each time is milder not worse - as I do need to go to work every now and then - but after 2 years of shielding it was scary to get it and not know what I was in for. It seems across the UK each area having it’s own rules/regulations etc is not whats best for patients though. Good luck with your 5th Jab!

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@Livingto100 Glad to hear your’e better, but it is all such a shambles - we’re very lucky to have the campaigning and communication work from Blood Cancer UK to help keep us all ‘on track’!

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Absolutely! They are wonderful.

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Hello Muppet and Everyone

I am so sorry to hear that you have had covid and hope that you are coming through the worst of it now. Your story is very similar to mine when I tested positive for covid in March. As requested by my consultant I let them know that I was positive and she said that she wanted me to go on medication but it was dealt with by a hospital in the next county. Long story short the doctor at the hospital said he didn’t want me to have medication as I was 18-months out of treatment. It alarmed me at first but he said that if I became any worse then to contact them,which was a safety net. Also something which really helped me was to get an oxygen monitor to keep track of my oxgen levels. It was 14 days before I tested negative and I did have a really heavy head cold. Post covid I am feeling a bit washed out and my energy levels have certainly been set back a bit. It is a very tricky dilemma for the medics, to medicate or not, but what I found a bit disconcerting was the difference of opinion. I would have thought with your history of asthma Muppet and my history of lymphoma on my lung, we would have been a ‘no question about it’ scenario. However, I do wish you a speedy recovery, plenty of warm sunshine and rest is the order of the day!

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Hi Muppet

I don’t think it’s that the NHS don’t buy enough of these anti-viral drugs, it’s just that everyone’s after them as the pandemic has been world wide over the past 2 years.

I have Chronic lymphocytic leukaemia (CLL) (Chronic Lymphatic Leukaemia) & I’m just finishing my years long targeted chemo treatment. I have been sent a letter from the NHS to let them know if I contract covid 19 (they’ve sent me a kit) & I will be given these anti-viral drugs. But as I’ve nearly finished my treatment & my white & red blood cell are now back to normal levels ! I wouldn’t be surprised if I got covid 19 that they might prioritise someone else for the anti-viral drugs ! I suspect it will depend on the supplies at the time ! But hopefully I can continue to avoid covid, but it’s also about having a quality of life too !

Best wishes that you get through covid with no problems !

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Hi @Dusty it is a fine balance to avoid Covid and also have a quality of social life and see friends. I have really missed that social interaction, just having a real laugh.
For me the scales are moving towards seeing friends.
Look after yourself

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Hi Erica

Yes it is a fine balance between doing the best to protect your health (from covid & other viruses) & living a fulfilling life with family & friends. I’ve decided to do my best & be as safe & careful as I can be, but I’ve also decided to pick up my social life with family & friends. Especially now I’ve nearly finished my treatment (finish this week) & my blood is back to pre Chronic lymphocytic leukaemia (CLL) levels. I also feel more confident knowing that the medical profession know a lot more about how to treat covid 19 than they did 2 years ago. The 2 years has been extremely difficult for everyone in some way or another !

Erica you have been on watch & wait for Chronic lymphocytic leukaemia (CLL) for a long time now, do you know if your close to having treatment yet ? What level are your white blood cells at ? Apparently anything bellow 5 is within normal levels (mines currently 3.1, it did get to 150 before I started treatment), but that wasn’t why I was started on treatment. It was because the Chronic lymphocytic leukaemia (CLL) had started to affect my red blood cells (they don’t let them get bellow 100, normal for me which it is now is 130/135).

Stay safe, well & try to have as much social life with family & friends as you feel comfortable having.

Dusty

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Hi Dusty I am very lucky as my bloods have stayed fairly stable although there are always fluctuations.
I believe the medics take a lot of factors into account before deciding treatment is the best option for us as individuals as we have to manage the symptoms we were diagnosed with. Other health and medication factors or conditions, age, family history, plus affect on quality of life factors etc. are weighed up as well as any other test results.
I see things very visually and I imagine the War of the Roses going on inside me with my white and red cells !!!
I am so glad that you are nearly finishing treatment, it must be a relief.
Yes, as Rod Stewart sings ‘Live the life you love and love the life you live’ but safely.

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What great analogies, Erica! I’ll keep them in mind next time I need a positive and ‘fun’ way to get out of a difficult moment!

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How are you doing now @muppet, I have been thinking of you.
Look after yourself