General safety measures

Patients with inherited bleeding disorders do not have an increased risk of contracting the coronavirus compared to the rest of the population. The measures introduced are the same as for other citizens and are aimed at protecting the individual and those around them from virus transmission and the potential development of severe pulmonary disease.

These measures are very important given that patients with inherited bleeding disorders are more likely to suffer from other chronic conditions, such as high blood pressure, diabetes, and obesity. More severe forms of COVID-19 are more common in patients with comorbidities.

Given the rapidly evolving situation, it is important to follow the current guidelines of government bodies (Central Crisis Staff, Ministry of Health).

Specific measures and recommendations are as follows

• Wash your hands regularly with soap or a hydro-alcoholic antibacterial gel
• When coughing and sneezing, cover your mouth with your elbow or otherwise (not with your palm)
• Use disposable tissues and throw them away immediately after use
• Avoid interpersonal contact or maintain a minimum distance of 2 metres
• Respect the imposed restrictions on free movement of people
• In accordance with the Czech government's decree, always wear protective face masks or similar items in public
• We recommend that people with blood clotting disorders minimise travel outside their place of residence; travel abroad is entirely inappropriate. If you end up in quarantine away from home, obtaining the necessary medication may become significantly more difficult.
• We recommend limiting visits to hospitals, including haemophilia treatment centres, only to situations where it is absolutely necessary. Haemophilia treatment centres have received a recommendation from the Czech National Haemophilia Programme (CNHP) to supply patients with medication for a period of at least 3 months.
• There is no reason to fear a shortage of clotting medications and to stockpile them at home. Supplies in the country and from pharmaceutical companies are sufficient, for both plasma-derived and recombinant products.
• In case of uncertainties or suspected COVID-19 infection, people with bleeding disorders should follow the same procedure as any other citizen -- i.e. contact the relevant contact points by telephone.
• In the event of hospitalisation due to COVID-19, always insist on a haematologist consultation -- heparin may be part of the treatment protocol, as COVID-19 leads to prothrombotic effects.

Special situations

To date, it has not been scientifically proven that patients with chronic hepatitis C (HCV) are at greater risk of contracting the COVID-19 virus. Patients undergoing treatment for chronic HCV, patients with liver insufficiency, or transplant patients should contact their hepatologist. Never discontinue treatment without consulting your treating physician.

Hospital operations

Hospital care for patients continues to be provided; however, in the current situation, acute cases are given priority.

Haemophilia treatment centres remain accessible and prepared to address all acute problems related to your condition. Hospital pharmacies that provide specific medications also continue to operate. If you plan to visit a haemophilia treatment centre, make sure you have contacted your healthcare facility by phone or email before visiting. Please do not visit your healthcare facility with a problem or to collect medication without prior notice. Even if you are coming with a bleed, make sure you have contacted them first to protect both yourself and the healthcare workers.

The list of contacts for haemophilia treatment centres can be found here: https://www.cnhp.cz/index.php?pg=sit-center.

Due to the current exceptional situation and limited number of staff, healthcare facilities are unable to answer all non-urgent enquiries. They are forced to postpone all planned consultations that are not absolutely necessary at this time, such as routine blood tests, follow-up and clinical check-ups.

Special situations

However, some specific situations may require a visit to a haemophilia treatment centre or hospital, such as:

• consultation in case of a newly diagnosed severe form of a bleeding disorder;
• clinical monitoring in case of initiation of a new treatment that cannot be postponed;
• essential blood tests, e.g. for the presence of antibodies, inhibitors, etc.;
• essential imaging examinations (e.g. X-ray, ultrasound examination);
• visit as part of a clinical trial, if necessary.

In these cases too, however, arrange everything in advance before visiting a healthcare facility.

Emergency department treatment

If emergency department examination is required, all the above-mentioned protective measures apply to an increased extent given the risk of the environment and the workload of healthcare staff. Before arriving at the emergency department, inform the physician at your haemophilia treatment centre if possible, and bring with you, in addition to your insurance card, your patient card for inherited bleeding disorders and a list of medications you are taking.

Treatment updates

Products used in the treatment of inherited bleeding disorders

Currently, there are no restrictions on the supply of medications used for the treatment of bleeding disorders in connection with the ongoing coronavirus epidemic, whether plasma-derived or recombinant products.

Due to the temporary restriction on free movement of people in connection with the ongoing epidemic, it is recommended that you collect a supply of replacement therapy for more than 1 month, in agreement with the physician at your haemophilia treatment centre, if needed. The condition is sufficient availability of products for all patients who need them.

The risk of coronavirus transmission through products used to treat inherited bleeding disorders, whether plasma-derived or recombinant medications, is currently considered to be zero.

Use of anti-inflammatory drugs

The use of anti-inflammatory drugs (corticosteroids, NSAIDs) may worsen the course of COVID-19 infection. In case of fever, take paracetamol and contact your physician. If you are currently being treated with these drugs and do not experience any symptoms of the disease, continue treatment without consulting a physician.

Use of analgesics and antipyretic drugs

Ibuprofen and other non-steroidal anti-inflammatory drugs (NSAIDs) are generally not recommended for patients with bleeding disorders, as they can increase the risk of bleeding by reducing platelet function. Their effect on worsening the course of COVID-19 infection during long-term use is also currently being investigated. In case of fever, therefore, take medications containing paracetamol up to a maximum dose of 2,500 mg per day and contact your physician.

Safety of blood product recipients

Since blood products (with the exception of Octaplas) do not undergo a virus inactivation process, the possible transmission of the COVID-19 virus cannot be entirely excluded. Blood donation centres in the Czech Republic are currently rejecting donors who have a positive epidemiological history regarding coronavirus and symptoms of infection. Blood product manufacturing procedures also prioritise methods that further minimise the risk of coronavirus infection.

Octaplas and some types of platelet concentrates include a pathogen inactivation step in their manufacturing. Your treating physician will provide you with details.

Clinical trials

Patients who are in a clinical trial or are to be enrolled in a trial will be contacted by the physician at their haemophilia treatment centre. They will discuss the further course of action, which may depend on:

• the individual situation of each study participant;
• the nursing care options available;
• the type of trial;
• the feasibility of initiating/continuing the given trial in the current situation.

All measures may evolve over time. You will be informed individually about any changes to treatment and clinical monitoring related to the treatment protocol.

Patients included in a trial are asked to remain at home in the vicinity of the haemophilia treatment centre where they are being monitored.

Delivery of medications to the homes of people with haemophilia during the restrictions imposed by the government

Several of you have already expressed concerns about medication availability and the journey to your haemophilia treatment centre. We have also heard of cases where such concerns lead to discontinuation of prophylaxis. As we have already assured you, there is a sufficient supply of medications in the country and no supply disruptions are currently expected. Disrupting the treatment regimen is therefore not appropriate and, on the contrary, may lead to much more serious complications, including bleeding requiring hospitalisation.

We would like to make access to medications easier and give you the opportunity to obtain them without having to leave the safety of your home. In cooperation with the leadership of the Czech National Haemophilia Programme, we have approached treatment centres with an offer to deliver medications from the centre to patients via courier. We offer this service primarily as assistance to those who cannot visit the haemophilia treatment centre in person because they belong to at-risk groups for COVID-19 infection (e.g. age over 60, cardiac or pulmonary disease, etc.).

How will it all work? Fill in the form at https://forms.gle/noQJaMbragHAsC5FA and submit it using the button at the end. You will receive a confirmation in your email inbox with a summary of the information you entered in the form. Call the telephone number of the clinic where you normally order your medications and arrange the next steps. If the haemophilia treatment centre wants a copy of the form sent from your email, request the address to which you should forward this email. The centre will confirm, modify, or supplement the order with additional details. If the centre is satisfied with a telephone order, you do not need to forward the email. It is possible that your haemophilia treatment centre may not wish to send medications via courier. In that case, please let us know and arrange a suitable alternative procedure with the centre. We have approached all centres, but have not yet received feedback from all of them on whether they will participate in the project.

The Czech Hemophilia Society will try to arrange a courier to deliver the medications from the centre to you. Coordinating deliveries will be demanding, so we want to consolidate multiple orders from the same centre into one delivery run. We therefore cannot guarantee the exact date when the courier will arrive in advance. However, we will make every effort to handle everything as quickly as possible and will keep you informed about the progress of your order. Everything will also depend on the volume of requests we are processing.

We are determined to do everything in our power to help and support you during this difficult time.

Board of the Czech Hemophilia Society Hemojunior in cooperation with MUDr. Věra Geierová and doc. MUDr. Jan Blatný, Ph.D.