Coronavirus and Bleeding Disorders FAQs
Last updated Tuesday 27 April 2021
The Haemophilia Society (THS) cannot give out any medical, diagnosis or treatment advice and recommend that you speak to either your haemophilia team or GP directly for advice on your healthcare concern.
The COVID-19 vaccination will reduce the chance of you suffering from COVID-19 disease. It may take a few weeks for your body to build up some protection from the vaccine. Like all medicines, no vaccine is completely effective – some people may still get COVID-19 despite having a vaccination, but this should be less severe.
If you were under 30 years old on 30 March 2021, you will not be offered appointments for the Oxford/AstraZeneca vaccine. There may be fewer appointments available, or you may have to travel further.
If you’re pregnant, speak to a healthcare professional from your maternity team or GP surgery before booking. It’s preferable for you to have the Pfizer/BioNTech or Moderna vaccines, which are not available at all vaccination sites.
April 12, 2021 – Statement released by the World Federation of Hemophilia & European Haemophilia Consortium
EMA, ISTH, WHO and many countries recommend benefit of COVID-19 vaccination outweighs risks
Risks of adverse events no higher in people with bleeding disorders. The European Medicines Agency (EMA) Pharmacovigilance Risk Assessment Committee (PRAC), following investigation of isolated cases of unusual blood clotting with low blood platelets that have occurred in a small number of cases worldwide, on April 7 reiterated that the benefits of COVID-19 vaccination outweigh the potential risk of adverse reactions.
In recent weeks, there have been reports from several countries suggesting that there is a link between AstraZeneca’s COVID-19 vaccination and unusual blood clotting reactions seen in a small number of cases. The European regulatory authority investigated 169 cases of blood clotting in the brain (cerebral venous sinus thrombosis, CVST) and 52 cases in the abdomen (splanchnic vein thrombosis) among 34 million people vaccinated, reported to the EU drug safety database EudraVigilance (as of April 4, 2021).
The April 4 data suggest a risk estimate of 1:153,000 for these thromboembolic events. It is important to note that risk estimates change daily with the increasing numbers of people vaccinated.
Compared to the general population, people with bleeding disorders are not at higher risk of this rare complication and are being advised to take whichever vaccine that is offered to them, in accordance with the vaccine roll-out in their country.
On March 31, the World Health Organization’s Strategic Advisory Group of Experts (SAGE) on Immunization stated that AstraZeneca’s COVID-19 vaccine is safe and that the evidence still weighs heavily in favour of its use, including in women under age 55, since many of the countries using it have safety warning signal systems in place and are not reporting problems.
On April 9, the International Society of Thrombosis and Haemostasis (ISTH) concurred with the EMA statement. The ISTH added that more rigorous scientific studies need to be undertaken to clearly determine if and how the AstraZeneca vaccine causes these events, and how they can best be diagnosed to be able to recommend the optimal treatments for them.
Guidance for the management of people with bleeding disorders – The benefits of the vaccines continue to outweigh the risks for people who receive it. The FDA/EMA-approved vaccines are effective at preventing most cases of COVID-19 and greatly reducing, and in some cases eliminating, hospitalizations and deaths among those who have been vaccinated.
The WFH and EHC summarize key points for patients and healthcare professionals, below:
Information for patients
• Patients are advised to follow their local public health guidelines and get vaccinated as soon as possible.
• The most common side effects are usually mild or moderate and improve within a few days after vaccination.
• Patients should seek medical assistance immediately if they have the following symptoms:
shortness of breath; chest pain; swelling in the leg; persistent abdominal (belly) pain; neurological symptoms, including severe and persistent headaches or blurred vision; tiny blood spots under the skin beyond the site of injection
The WFH and EHC continue to monitor and report on COVID-19 developments which may have impacts on the management of care for people with bleeding disorders.
A full statement is available on the World Federation of Hemophilia website
April 7, 2021 – Public Health England
Recently there have been reports of a very rare condition involving blood clots and unusual bleeding after vaccination. This is being carefully reviewed but the risk factors for this condition are not yet clear.
Although this condition remains extremely rare there appears to be a higher risk in people shortly after the first dose of the AstraZeneca (AZ) vaccine.
This is seen slightly more often in younger people and tends to occur between 4 days and 2 weeks following vaccination.
This condition can also occur naturally, and clotting problems are a common complication of COVID-19 infection. An increased risk has not yet been seen after other COVID-19 vaccines but is being carefully monitored.
If you have already had the first dose of the AZ vaccine without suffering any serious side effects, you should complete the course. This includes people aged 18 to 29 years who are health and social care workers, unpaid carers and family members of those who are immunosuppressed. It is expected that the first dose of the vaccine will have given you some protection, particularly against severe disease.
More information about your AstraZeneca (AZ) vaccine can be found on the Public Health England website
Press release – Medicines and Healthcare products Regulatory Agency
Published: 7 April 2021
MHRA issues new advice, concluding a possible link between COVID-19 Vaccine AstraZeneca and extremely rare, unlikely to occur blood clots.
The benefits of vaccination continue to outweigh any risks but the MHRA advises careful consideration be given to people who are at higher risk of specific types of blood clots because of their medical condition.
- The MHRA is not recommending age restrictions in COVID-19 Vaccine AstraZeneca vaccine use.
- The MHRA’s scientific review of UK reports of extremely rare and unlikely to occur specific blood clots with lowered platelets has concluded that the evidence of a link with COVID-19 Vaccine AstraZeneca is stronger but more work is still needed.
- By 31 March 20.2 million doses of the COVID-19 Vaccine AstraZeneca had been given in the UK meaning the overall risk of these blood clots is approximately 4 people in a million who receive the vaccine.
- Anyone who did not have these side effects should come forward for their second dose when invited.
- The data suggest there is a slightly higher incidence reported in the younger adult age groups and the MHRA advises that this evolving evidence should be taken into account when considering the use of the vaccine.
- The MHRA is now issuing updated guidance for healthcare professionals on how to minimise risks, as well as further advice on symptoms for vaccine recipients to look out for 4 or more days after vaccination.
- Vaccines are the best way to protect people from COVID-19 and have already saved thousands of lives. Everyone should continue to get their vaccination when asked to do so unless specifically advised otherwise.
As a precaution, the administration of COVID-19 Vaccine AstraZeneca in people of any age who are at higher risk of blood clots because of their medical condition should be considered only if benefits from the protection from COVID-19 infection outweighs the potential risk.
Anyone who experienced cerebral or other major blood clots occurring with low levels of platelets after their first vaccine dose of COVID-19 Vaccine AstraZeneca should not have their second dose. Anyone who did not have these side effects should come forward for their second dose when invited.
Pregnancy predisposes to thrombosis, therefore women should discuss with their healthcare professional whether the benefits of having the vaccine outweigh the risks for them.
The MHRA recently confirmed that the evidence to date does not suggest that the COVID-19 Vaccine AstraZeneca causes venous thromboembolism without a low platelet count.
It is important to note that this type of blood clot together with lowered platelets can rarely occur naturally in unvaccinated people as well as in people with COVID-19 disease.
While the MHRA continues to investigate these cases, as a precautionary measure, anyone who has symptoms four days or more after vaccination is advised to seek prompt medical advice, such as:
- a new onset of severe or persistent headache, blurred vision, confusion or seizures
- develop shortness of breath, chest pain, leg swelling or persistent abdominal pain,
- unusual skin bruising or pinpoint round spots beyond the injection site
Full information can be found at https://www.gov.uk/government/news/mhra-issues-new-advice-concluding-a-possible-link-between-covid-19-vaccine-astrazeneca-and-extremely-rare-unlikely-to-occur-blood-clots
The Joint Committee on Vaccination and Immunisation (JCVI) have also published a statement following reports of an extremely rare adverse event after vaccination with the first dose of the AstraZeneca COVID-19 vaccine.
This includes information on the use of the vaccine in those under 30.
April 7, 2021 – If you have any concerns regarding the AstraZeneca vaccine, please contact your haemophilia centre or GP for advice.
March 19, 2021 – The World Federation of Hemophilia (WFH) continues to closely monitor developments in COVID-19 treatment and vaccination to ensure that we provide accurate and up-to-date information that may affect the community of people with hemophilia and other inherited blood disorders.
The benefits of the AstraZeneca vaccine in combating the still widespread threat of COVID-19 (which itself results in clotting problems and may be fatal) continue to outweigh the risk of side effects;
- the vaccine is not associated with an increase in overall risk of blood clots (thromboembolic events) in those who receive it;
- there is no evidence of a problem related to specific batches of the vaccine or to particular manufacturing sites;
- however, the vaccine may be associated with very rare cases of blood clots associated with thrombocytopenia, i.e., low levels of blood platelets.
Full statemeent can be found here https://www1.wfh.org/docs/website/en/News/WFH-statement-on-AstraZeneca-COVID-19-vaccine-March2021.pdf
How many people have been vaccinated?
Vaccination numbers are published daily here: https://coronavirus.data.gov.uk/details/healthcare
Where can I find more information on the COVID-19 vaccine programme?
- England: coronovirus vaccine information
- Scotland: coronovirus vaccine information
- Wales: coronovirus vaccination information
- Northern Ireland: coronovirus vaccine information
What COVID-19 vaccines are licensed for adults in the UK?
There are now three authorised vaccines for supply in the UK, The Pfizer/BioNTech vaccine, Oxford/AstraZeneca vaccine and Moderna vaccine.
Can children have the COVID-19 vaccine?
COVID-19 vaccines are currently not licensed for use in children.
When will I have my COVID-19 vaccine?
The COVID-19 vaccine is only available through the NHS to eligible groups and it is a free vaccine. The NHS will let you know when it’s your turn to have the vaccine. It’s important not to contact the NHS for a vaccine before then. When it’s your turn to have the COVID-19 vaccine, you’ll get a letter, phone call, email or text from the NHS inviting you for an appointment. More information can be found here.
How is the COVID-19 vaccine is given?
The COVID-19 vaccine is given with a needle into muscle (intramuscularly). Your upper arm (deltoid muscle) will be used. There is not a subcutaneous option available for this vaccine. It’s given as 2 doses, at least 21 days apart.
How safe is the COVID-19 vaccine?
The vaccine already approved for use in the UK was developed by Pfizer/BioNTech. It has met strict standards of safety, quality and effectiveness set out by the independent Medicines and Healthcare products Regulatory Agency (MHRA).
COVID-19 vaccine ingredients
The COVID-19 vaccine does not contain any animal products or egg. More details about what the vaccine contains can be found here: https://www.sps.nhs.uk/articles/excipients-information-for-pfizer-biontech-covid-19-vaccine/
Where can I get the COVID-19 vaccination?
Vaccines will be offered in a range of settings. Some vaccination teams will visit people to administer the vaccine, for example in care homes, others may have to go to your nearest centre. Because some of the vaccine has to be stored in a very low-temperature freezer, you may not be able to get the vaccine in your normal GP surgery.
What do I need to bring with me to the vaccination centre?
If you are taking medication, it is really important that you bring a list of these with you to the vaccination centre. Do not bring the medicines themselves. If the doctors and nurses running the clinic can’t be sure what medicines you are on, they may not be able to give you your vaccine.
What precautions should I take?
Talk to your centre, nurse or doctor before you are given the vaccine if you have:
- a weakened immune system, such as due to HIV infection, or are on a medicine that affects your immune system
- a bleeding problem, bruise easily or use a medicine to inhibit blood clotting
- had a serious allergic reaction to a previous vaccine, medicine or food
- had any problems following previous administration of COVID-19 mRNA Vaccine BNT162b2 such as allergic reaction or breathing problems
- a severe illness with high fever – However, a mild fever or upper airway infection, like a cold, are not reasons to delay vaccination.
Further guidance about the vaccine can be found here
We encourage anyone with a bleeding disorder who is concerned to discuss the possible implications of receiving the COVID-19 vaccine with their haemophilia centre.
These questions were produced in conjunction with Haemophilia Scotland.
What is the latest guidance for giving the COVID-19 vaccine to people with a bleeding disorder?
People with bleeding disorders may be vaccinated intramuscularly if, in the opinion of a doctor familiar with the their bleeding risk, vaccines or similar small volume intramuscular injections can be administered with reasonable safety by this route.
If the individual receives medication/treatment to reduce bleeding, for example treatment for haemophilia, intramuscular vaccination can be scheduled shortly after such medication/treatment is administered. A fine needle (23 or 25 gauge) should be used for the vaccination, followed by firm pressure applied to the site (without rubbing) for at least 2 minutes (ACIP, 2019). The individual/carer should be informed about the risk of haematoma from the injection.
Further information can be found via the following link: COVID-19 vaccination programme
The latest guidance can be found here: Guidance from the World Federation of Hemophilia (WFH), European Association for Haemophilia and Allied Disorders (EAHAD), European Haemophilia Consortium (EHC), and U.S. National Hemophilia Foundation (NHF)
Who will have first priority for the new vaccine?
The Government has published a list of the priority groups for COVID-19 vaccination which you can find here.
Top priority are elderly residents in a care home and their carers, all those 80 years of age and over and frontline health and social care workers. Also on the priority list are those classified as clinically extremely vulnerable and people with underlying health conditions, including chronic liver disease.
Can I get a subcutaneous or ‘needle free’ flu vaccination this year to avoid the risk of an intramuscular bleed?
The flu jab can be given subcutaneously, but practice nurses may require a call or letter from your haemopohilia centre to proceed. Many centres do not stock supplies so patients are advised to obtain it via the GP or pay at a pharmacy.
Children aged 2 to 17 years may also have the flu vaccine injection if the nasal spray vaccine is not suitable for them. www.nhs.uk/conditions/vaccinations/child-flu-vaccine/
At the moment GPs are only offering flu jabs to “vulnerable” groups and having a bleeding disorder alone would not qualify. www.nhs.uk/conditions/vaccinations/flu-influenza-vaccine/
Is it safe for me to have a COVID–19 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 haemophilia.scot/covid19.
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, 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
The Haemophilia Society is open and working as normal, as far as we can. We cannot advise you medically – please phone your haemophilia centre for that – but we are here for you if you want to talk. Please call us on 020 7939 0780.