CLL - Extremely Vulnerable clarified

[bennevisplace]

Previous posts have discussed the contentious issue of which CLL patients in the UK are classed as Extremely Vulnerable and are therefore eligible for government support. Members on watch and wait in Scotland have been excluded as they are not among those "who are at any stage of treatment". While few members in England have said the same, many reported not receiving the NHS shielding letter.

Apparently NHS Scotland adopted the guidance from NHS UK, which also included the qualifier "who are at any stage of treatment", but interpreted it in a literal and restrictive way. Curiously, earlier NHS guidance had omitted the offending phrase, so that anyone with blood cancer would then have been considered Extremely Vulnerable.

Confused? Join the club.

NHS England has recently clarified "the conditions that put someone at highest risk of being severely ill if they were to catch COVID-19" in a letter to NHS practitioners. These include people " ...who are at any stage of treatment" but crucially with a footnote "This means before, during or after treatment, including those being managed expectantly".

It could not be any clearer: NHS England practitioners are directed to include all CLL patients as being at highest clinical risk to COVID-19, i.e. extremely vulnerable. If you are on watch and wait, you may be a footnote, but you're in. Where that leaves patients in Scotland who knows, I guess it depends on whether or not NHS Scotland chooses to adopt the guidance.

The new clarification can be downloaded from bloodcancer.org.uk/support-...

(Copied and pasted)

To: Cancer Alliance leadership teams

Cc: regional teams

7 May 2020

Dear Colleagues,

We are contacting you to ask for your help in reminding the clinical teams in your areas of their role in identifying patients at highest clinical risk to COVID-19 and advising them to shield. The list of conditions that put someone at highest risk of being severely ill if they were to catch COVID-19 is set out in Annex 1.

(letter continues)

Kind regards,

(Signed)

Professor Peter Johnson

National Clinical Director for Cancer

----------------------

Annex 1:

1. Solid organ transplant recipients.

2. People with specific cancers:

o people with cancer who are undergoing active chemotherapy

o people with lung cancer who are undergoing radical radiotherapy

o people with cancers of the blood or bone marrow such as leukaemia,

myelodysplastic syndromes, lymphoma or myeloma who are at any stage of

treatment(1)

o people having immunotherapy or other continuing antibody treatments for

cancer

o people having other targeted cancer treatments which can affect the immune

system, such as protein kinase inhibitors or PARP inhibitors

o people who have had bone marrow or stem cell transplants in the last 6

months, or who are still taking immunosuppression drugs(2)

3. People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe chronic obstructive pulmonary (COPD).

4. People with rare diseases that significantly increase the risk of infections (such as SCID, homozygous sickle cell).

5. People on immunosuppression therapies sufficient to significantly increase risk of infection.

6. Women who are pregnant with significant heart disease, congenital or acquired.

_________________________________

(1) This means before, during or after treatment, including those being managed expectantly

(2) When applying these criteria locally, clinicians should take into account the new Covid-19 NICE guidance on haemotopoietic stem cell transplantation which states that patients should follow shielding advice:

• if they had an autologous HSCT within the last year

• if they had an allogeneic HSCT within the last 2 years, or they are having continuous immunosuppressive therapy, they have chronic graft versus host disease (GvHD) or there is evidence of ongoing immunodeficiency (or for other extremely vulnerable groups based on clinical assessment).

[John_EDN]

Hi Bennevisplace,

I raised this at the end of a call with my Scottish GP (under AoB...) and he simply said, "you should be on the list - I'll get you put on it". I have since received the appropriate letters with offers of assistance should I need it.

The letter lists out "diseases and conditions considered to be very high risk" including "cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment". I take this to include W&W which is the stage I am at.

Whether I/we are actually "very high risk" remains to be seen but I'm assuming so for now.

All the best,

John

[bennevisplace in reply to John_EDN]

Glad to hear your GP was sympathetic John. By most accounts others north of the border were not so fortunate, while in England not so long ago about 1/3 of those classed as vulnerable had not received the shielding letter.

I think you are right to assume you are at very high risk until your haematologist says otherwise. That's my guiding principle too.

[AdrianUK]

Replying to this mostly to bump it back up to the top! I hadn't seen this when you posted it a few days ago but am very conscious of the fact that many UK patients have run into this very difficult dilemma caused by doctors trying to apply their clinical discretion to a situation where we have no clear data.

This clarification is most helpful. It is consistent with a statement that was made by the UK CLL Forum (a group of experts in CLL), by all three major patient charities in various communications (CLLSA, Leukaemia Care, Blood Cancer UK) and actually is born out in the data such as there is data and in the case reports that are building up in the literature and also news articles. There is no question that there have been people with CLL who have died from Covid19. There have been others who have got very sick been ventilated but ultimately recovered. There have also been some who reported testing positive but having relatively mild disease.

Once antibody testing becomes more widely available there may well even be some who somehow managed to get the disease, develop antibodies but didn't even realise they had it! Yes it is probably true that different stages of CLL might alter the balance of what proportion of us would fit in each group. But it is also almost certainly true that given we have a lymphocyte blood cancer and lymphocytes make antibodies, that we are at higher risk. Indeed the blood cancer UK news section has several articles which review what data there is and their conclusion is that when you look at numbers of people on ITU in the UK and numbers of people out of a massive study of 17 million GP patients, people with blood cancer of any kind or any stage are sadly probably the highest risk group of any medical condition other than solid organ transplants which seem to be similar. This seems to be the firm conclusion of the available science and seeing it clearly acknowledge in such an NHS document is very helpful for those unfortunate people still being denied the advice to shield and all the rights that come with it. There are no plans among the top CLL experts in the UK to change this position moving forward (and I have asked one of them who I will keep nameless at this point).

We are all facing a deficult few months. And the conclusion of a Leukaemia care support group that some of us attended this week seems to be that as some people are able to return to more normal living this is only going to become more problematic for us as a group. But we are all in this together. And the good news seems to be that despite claims in the Guardian to the contrary SHIELDING IS WORKING in that there have not been the huge numbers of people with blood cancer or who are shielding for any other reason getting sick. If we are all living in a household where everyone is strictly shielding none of us will catch COVID19. The challenges of course become much more acute when we try to establish safe practices for a "mixed household" of shielders and non shielders. This challenge was what led me and some others to actually move out of their family homes for the duration of the crisis. How long we should stay away from our families is one of those questions that becomes more acute as the months go on. Like should I send my kids back to school if I live with them as a CLL patient (some CLL experts are clearly saying NO to that at the moment) but what about if your partner or indeed you have a job. How do we survive? How do we thrive? What is the way out for us when the most hopeful thing, the vaccine which just might arrive in September is very possible not going to work directly for us. Lots of questions. But I am glad we are all in this together. We will get through this and out the other side. It just might take us somewhat beyond the end of the month.

[bennevisplace in reply to AdrianUK]

Hi Adrian, thanks for this.

Far as I know the 7 May letter from Prof Johnson was the first from NHS to clarify the position of patients on w&w. It was a wake-up call to medics in England, but it doesn't seem to wash in the rest of the UK where GPs can still decide whether a patient goes on the Extremely Vulnerable list. This has left a lot of people without the support they need to stay safe.

The UK is transitioning from lockdown to normality (and back?) with an underdeveloped test and trace system, so how the EVs move on from here is, I agree, going to be tricky. It does seem sensible for individuals to make their own decisions rather than abide by generic advice coughed up by hm gov.

My lymphocytes, post chemo, have been flat lining at 0.3, so I'm in no doubt I should be shielding head/toe 24/7. Still, I'm going to have the grandchildren visit at the weekend, if only to run around in the garden (them rather than me) and say hi from 2 metres away. We may be lunching alfresco too, and just adding that to the programme means thinking of ways to avoid contact with everything visitors might have touched. Another thorny issue is moving home, with all that that entails, being on the way towards exchange of contracts in July/August. Even going to see other properties is complicated if further away than a day trip.

So yes, we are all vulnerable to some degree, but we have to live, and each of us needs to operate a strategy that gains us essential freedoms while minimising risk to ourselves and others. I only wish that we could rely on everyone else out there to do likewise.

[AdrianUK in reply to bennevisplace]

Hi there was a document that predated that which outlined the way they had searched the databases and if you read that and understood it they had looked for anyone who ever had a diagnosis. I think the guidance from the government is just that advice and I think we need to be strong that everyone should have the rights conveyed by being on the list but also the right to make their own risk assessment and do what they choose. Sounds like you are having some real challenges and I think we all do. I sure do.