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Coronavirus and bleeding disorders – frequently asked questions

Last updated Tuesday 07 July 2020

Is it safe for me to have a COVID19 nasal/throat swab test?

The test usually involves taking an invasive swab at the back of your nose and throat, using a long cotton bud. Essentially, if you haven’t had a recent episode of a nosebleed there is no reason a nasal swab should trigger a bleed. However, it is difficult to say if there is zero risk involved and you should discuss it with your haemophilia team before having the test as they will be able to make a much more individualised risk assessment for you.

If I have an inherited bleeding disorder am I at increased risk of catching coronavirus (COVID-19)?

No. There is no evidence that people with a bleeding disorder are any more likely to catch the virus than the general population. However, it is vital to follow the latest Government advice to minimise the chances of catching or passing it on.

See information below about the impact of coronavirus on specific conditions or treatments.

Will coronavirus affect home delivery or the supply of my treatment?

The Haemophilia Society has been in touch with commissioners across the UK who have reassured us that plans are in place to ensure the continuity of supply is maintained. We will continue to monitor this issue. Click here for the latest information on medicine homecare services.

If you live in Northern Ireland, you should follow normal procedure for ordering and delivery. If you are in isolation or can’t get to your centre, you should call the centre and arrangements will be made to get factor to you.

If you live in Scotland, relevant information and regularly updated advice can all be accessed via this link

In Wales home delivery orders have increased to six weeks’ supply at a time.

The NHS is under pressure – should I still contact my haemophilia centre if I have a problem?

Yes, but do not go to your haemophilia centre unless you are told to do so. All contact should be by telephone in the first instance. Your team is expecting you to contact them if you have a bleed and we advise you to do so if you have any concerns. We know some of you have had trouble getting through to your centre. Please be aware that many centres will be down to minimum staffing so there may be a longer wait on the telephone than usual but there will be someone to help you. Some centres are having to relocate to free up space in hospitals, but are continuing their work as usual.

Is using Haemtrack important?

Yes. By using the Haemtrack system to fill in details of your treatment, staff at your haemophilia centre can monitor your condition. Every Haemophilia Centre in the UK can use the Haemtrack system. They will receive alerts if there is any cause for concern. You can use this on your home computer or, preferably, on your smartphone (iPhone or Android phone). Watch this short video to see how to register.

How can I make sure my bleeding disorder is known to doctors in an emergency?

We strongly recommend that everyone keeps their Bleeding Disorder Card with them at all times. If you have a Medic Alert bracelet or similar medical ID service, please make sure you wear it. People with coronavirus have to be isolated which means you probably will not have someone with you to explain to medical staff about your bleeding disorder. Be prepared.

What happens if NHS111 tells me to go to hospital because of coronavirus?

Let your haemophilia team know immediately by phone but do not go to your haemophilia centre. Follow the advice of your team. If you have treatment for your bleeding disorder at home, take it in with you and keep it with you at all times. If you keep copies of your clinic letters it may be helpful to take them with you to save time, but don’t worry, your haemophilia team can send information through very quickly. We have also developed a resource to help you record the necessary information that you should have available if you are admitted to hospital. You can view and download it here.

I have had gene therapy what should I do?

Anyone who has received gene therapy and is still in a phase of receiving immunosuppressants is classed as extremely vulnerable by the Government and will be notified directly about extra precautions to take in order to shield yourself from the risk of infection. If you feel unwell then phone your haemophilia centre, as the threshold for medical review will be lower and your dose of steroids may need to be adjusted. If you are concerned, do not stop taking your immunosuppression.

I have inhibitors, am I at extra risk?

No, unless you are taking drugs to depress the immune system, which is rare. See the section above on gene therapy.

What if I’m HIV positive?

The Government has identified people who are extremely vulnerable to coronavirus which initially did not include people living with HIV. However, recently some people with HIV have received letters from the Government telling them they are extremely vulnerable to COVID-19 . The advice from The British HIV Association has not changed. It is advising only those with a CD4 count of less than 50 or those diagnosed with an opportunistic infection within the last six months to follow the advice for the most vulnerable. You can find that information here. The Terrence Higgins Trust has more useful advice on HIV and coronavirus. The Haemophilia Society has written to the Government to ask for clarification on this issue.

What if I have chronic hepatitis?

People with chronic hepatitis infections or complications from previous hepatitis C infection are considered at increased risk from coronavirus. It is important to strictly follow Government advice to reduce the risk of coronavirus infection. We are talking to the Hepatitis C Trust to make sure we bring you the latest information.

How do I know if I’m classed as “extremely vulnerable” to coronavirus?

The Government has identified people who are at very high risk of severe illness as a result of COVID-19 and are therefore extremely vulnerable. These people have been contacted directly by text message, letter or their GP. If you think you should be in this category and have now not heard anything contact your GP or clinician for guidance. The list of vulnerable groups is here.

Does COVID-19 impact the blood clotting mechanism and how does this affect someone with a bleeding disorder?

In the general population, severe COVID-19 requiring hospitalisation can lead to changes in blood clotting. A bleeding disorder will not increase the risk of these changes in blood clotting. Your haemophilia team will be able to manage your bleeding disorder and liaise with the team taking care of you to manage any changes in blood clotting if you become ill.

I am on Hemlibra (Emicuzimab), does this have any impact on the COVID-19 virus?

Taking Hemlibra or having haemophilia doesn’t put you at increased risk of infection with the COVID-19 virus, however as Hemlibra does have an impact on how blood tests, specifically those that measure blood clotting, there are extra precautions you should take if you are infected with the virus.

We now know that some people who have the virus and become very unwell can have problems with their blood clotting, the tests used to assess this can be affected by taking Hemlibra and alter the results.

To ensure this is always taken into account, it is essential that the team caring for you is told you are on Hemlibra and it can affect your blood clotting test results.

As with all our other advice, it is important that you, or, if you are too unwell, a family member contacts your haemophilia centre as soon as you know you may be admitted to hospital with possible COVID-19 symptoms. You should also always have your Hemlibra awareness card and Bleeding Disorder Card with you. 

I’m worried. What should I do?

Our whole lives have changed in a matter of days, so feeling worried or anxious is understandable and normal. There is so much uncertainty in our lives and things can feel out of our control. Although it is natural to want to read everything about COVID-19, try to find space for other things such as speaking with friends and family using the telephone or technology and doing relaxing activities online. Try to eat healthily and use your daily exercise slot, if you can.  If you have any concerns about a bleed or anything relating to your bleeding disorder, do not hesitate to call your haemophilia centre. You can find more advice about how to look after your mental health here.

The Haemophilia Society is open – we are here to help

Although our office is shut, The Haemophilia Society is open. We cannot advise you medically – please phone your haemophilia centre for that – but we are here for you if you want to talk. Please do call us on 020 7939 0780.