Covid-19 Advice for those living with HTLV Infection

In order to best support people living with HTLV infection during the Covid-19 pandemic, we have considered advice from both Public Health England (PHE) and Imperial College Healthcare NHS Trust.

This is a new virus, and there are no data yet on how it will affect those living with HTLV infection.

For those with HTLV-2 infection we do not expect any impact of Covid 19 on this.

For those with HTLV-1, low proviral load (less than 4%) and asymptomatic infection, the risk may be the same as for those without HTLV infection and advice from the NHS and government for the general population applies.

For others who have complications of HTLV-1 infection or a high HTLV-1 proviral load (more than 4%), the risk may be different and may differ according to the different diseases and therapies.

Clinic Visits to the National Centre for Human Retrovirology, London

Out-patient appointments are being reviewed regularly to minimise any risk to yourselves during your travel to hospital.  If you have an upcoming hospital appointment, you will be contacted in the week(s) before to discuss this and may be switched to a telephone clinic appointment first.  If we decide it is necessary for you to visit, we will arrange a face to face appointment.

There are 3 groups of patients, and we have given separate advice below.

1.  Asymptomatic HTLV infection.  If you are an asymptomatic carrier of HTLV, and not on any immunosuppressive medication from the HTLV clinic:

In line with guidelines from PHE, if you have a new continuous cough, fever or loss of smell or taste, you should

•  Stay at home

•  Self isolate for at least 10 days, if anyone in your household is affected

•  Contact nhs111 at the end of this period if you are not better.

•  Let us know when you next attend our clinic.

See https://www.nhs.uk/conditions/coronavirus-covid-19/ regularly as advice may change.

2. HTLV associated myelopathy

For those on anti-inflammatory and therefore immunosuppressive medication such as methotrexate, prednisolone, mycophenolate or ciclosporin: these medicines should not be stopped abruptly or without the advice of the clinical team. Please check your supply of the above medication. If you think you will run out of the above medication- please let us know.

If you develop typical symptoms of Covid-19, please follow the advice given by PHE. In addition, contact our clinic as soon as possible within working hours to us to let us know.  We shall discuss further management with you.

If you are admitted to another hospital, please ask the clinical team to inform us of your admission, as is usual practice.

3.  Adult T cell leukaemia/lymphoma

If you are receiving chemotherapy or other treatment at Imperial College Healthcare NHS Trust and think you may have Coronavirus, please call the Haematology Triage unit at Hammersmith Hospital which is open 24hours a day (020 3311 7788) and a senior nurse will give you further advice.   In an emergency please phone 999 as always.

The blood cancer charity BLOODWISE has put together a useful video and patient information for patients with blood cancer worried about coronavirus https://bloodwise.org.uk/blog/coronavirus-and-blood-cancer

4. Our advice about COVID-19 vaccination for those with HTLV infection from the NCHR

•  Most will require an initial 2 doses of vaccination AND a booster dose six months later.

•  Some people will require a third dose during their vaccination course and a booster dose at a later stage. This group will be contacted separately by the clinic

•  See your GP or visit the NHS COVID-19 vaccination website to arrange a vaccination. If you do not have a GP or are experiencing difficulty arranging vaccinations, please contact your clinic who may be able to arrange this for you.

•  If you have concerns about the vaccine that you would like to discuss, please contact the NCHR and discuss this with the clinical team.