Q: How does the UK's Government Guidelines impact me?

Guidance on shielding and protecting people defined on medical grounds as extremely vulnerable from COVID-19

News Alert

You will have seen the UK Government have updated its guidance and is now "classifying people on immunosuppression as being extremely vulnerable, which probably includes pwMS on immunosuppressive DMTs. There are three reasons for this. (1) To protect you from potentially getting infected with SARS-CoV2 and (2) potentially getting more severe COVID-19 that needs hospitalisation and a potential ITU bed and ventilation. (3) There is also a potential risk of creating a population of super spreaders, which increases the risks to the general population. Immunosuppressed people may not be able to clear the virus quickly and hence shed more virus and for longer.

Why are these guidelines important?

If you live in the UK and have MS you may receive a letter from the NHS stating that you are potentially in the 'extremely vulnerable group'. The reason for that is they are using GP databases and other sources of information to identify patients who may be on immunosuppressive therapy. If you receive one of these letters don't be alarmed and please contact your MS Team for specific advice. In my opinion the only pwMS who should be classified as 'extremely vulnerable group' are those who have had HSCT and alemtuzumab in the last 3-6 months and are still immunodepleted (very low lymphocyte counts) or patients with severe disability who have swallowing problems and/or a history of recurrent chest infections. The latter is in line with what the Association of British Neurologists are saying as well.

Putting the guidelines into perspective

I have made the point repeatedly that with MS not all DMTs are equal and things are not necessarily black-and-white, but more a shade of grey. However, to put out a clear message the government has had to be black-and-white. I suspect the main driver for this is public health. We have to flatten the COVID-19 curve and protect the NHS. Therefore the more people that are socially isolating the slower the virus will spread the flatter the peak of the COVID-19 curve. In reality, we are rapidly approaching this situation where the general population will have to socially-isolate themselves and their families. This should put things into perspective for you; in other words, what is being asked of pwMS today will be asked of the general population tomorrow. Yesterday certain London boroughs closed their parks and this will happen across London; possibly even today. I suspect we will all be quarantined with only essential workers allowed out of their homes. In short, what is happening in Italy will happen in the UK.

What about if you have MS and are an essential worker? If you can work from home, please work from home. If your job involves no contact with people then you may be able to continue working; however, please clear this with your organisation. If your job entails coming into contact with people and particularly people infected with SARS-CoV2 then you are going to have to self-isolate. This advice may seem harsh, but this is a war, a war against a virus, and it demands extraordinary sacrifices at an individual level for the good of society. This is not only about looking after your own health, but the health of the country.

The above advice may change by tomorrow. If we don’t adhere to the Government’s advice, it will become a diktat tomorrow.

I have put together some slides to show how we think immunosuppression may affect the disease severity curve of COVID-19. Please note it is a may and not a definite as we don’t have evidence to back up these claims. I hope this is self-explanatory.

Date & Disclaimer: 23-March-2020; please note this information will be time limited and will change as new data emerges.

MS-Selfie COVID-19 immunosuppression

The following is from the Governments website:

What do they mean by 'extremely vulnerable'?

People falling into this extremely vulnerable group include:

  1. Solid organ transplant recipients
  2. People with specific cancers:
    • people with cancer who are undergoing active chemotherapy or radical radiotherapy for lung cancer
    • people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
    • people having immunotherapy or other continuing antibody treatments for cancer
    • people having other targeted cancer treatments which can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
    • people who have had bone marrow or stem cell transplants in the last 6 months, or who are still taking immunosuppression drugs
  3. People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe COPD.
  4. People with rare diseases and inborn errors of metabolism 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.

Shielding is for your personal protection, it is your choice to decide whether to follow the measures we advise. Individuals who have been given a prognosis of less than 6 months to live, and some others in special circumstances, could decide not to undertake shielding. This will be a deeply personal decision. We advise calling your GP or specialist to discuss this.

The NHS in England is directly contacting people with these conditions to provide further advice.

If you think you fall into one of the categories of extremely vulnerable people listed above and you have not received a letter by Sunday 29 March 2020 or been contacted by your GP, you should discuss your concerns with your GP or hospital clinician.

We understand this is an anxious time and people considered extremely vulnerable will understandably have questions and concerns. Plans are being readied to make sure you can rely on a wide range of help and support.

Date & Disclaimer: 23-March-2020; please note this information will be time limited and will change as new data emerges.