Clotting factor provision
Sufficient supply of clotting factor concentrates to patients is a basic requirement for complete prophylaxis according to the guidelines of the World Federation of Haemophilia (WFH). UAHARD has its representatives in the expert group of the Ministry of Health of Ukraine, which composes the nomenclature of clotting products that are purchased at the expense of state budget. Thanks to active advocacy of our interests, the funding of haemophilia budget programme has increased 5-fold over the recent 5 years.
Home therapy gives people with haemophilia round-the-clock access to clotting factor concentrates, and ensures treatment of early symptoms, thus preventing pain, dysfunction and duration of disability, and significantly reducing the incidence of hospitalization. UAHARD is continually working for implementation of home prophylactic therapy in all regions of Ukraine.
A correct diagnosis is essential for effective management of patients with bleeding disorders. An accurate diagnosis can only be made if a good and reliable laboratory services are available. This depends on the strict adherence to testing protocols and procedures, which require knowledge and expertise in the field of coagulation, and the use of quality equipment and reagents. UAHARD has direct agreements both with private laboratories and specialised research institutes to ensure comprehensive laboratory diagnostics of patients.
Rehabilitation after the bleeding and regular physical therapy are important to ensure the normal condition of the patients' nervous and musculoskeletal systems. People with haemophilia are at risk of decreased bone mineral density. Physical exercises prevent haemarthroses and improve skeletal health. UAHARD collaborates with rehabilitation centres, where children and adults with haemophilia can receive physical therapy and rehabilitation.
When a patient develops severe haemophilic arthropathy, which is accompanied by pain and loss of joint function, and which does not respond to conservative treatment, the total joint replacement (endoprosthesis) is indicated. Joint replacement restores normal range of motion and significantly improves the quality of life of patients. Joint replacement surgery is performed only in certain haemophilia centres by experienced orthopaedic surgeons, where all necessary haematological and laboratory support is provided. UAHARD promotes the development of a state program for joint surgery, which must be free of charges for patients with haemophilia.
In the 1980-1990s, insufficiently purified blood products were used in the treatment of haemophilia. Therefore, many patients have been infected with hepatitis B and C viruses. According to different estimates, more than 90% of adult patients have contracted those viruses. Today, hepatitis is one of the three leading causes of death in patients with haemophilia. To prevent the development of cirrhosis and hepatocellular carcinoma, the patient should be promptly diagnosed and receive antiviral therapy. UAHARD works with patients and leading infectious disease physicians to implement hepatitis treatment programs with modern interferon-free direct antiviral drugs.
Most adults with haemophilia experience numerous challenges in social and private life. Psychological complexes often prevent them from feeling comfortable and free in the society, do not allow them to receive education, find a job, create a family. It is very important for parents to properly educate their children, so that they feel empowered and fully valued members of the society and are able to implement their plans and dreams in life. UAHARD collaborates with psychologist Margarita Mukhina, who specializes in assisting patients with bleeding disorders. All interested patients and their relatives are encouraged to contact her to receive psychological counselling: 067-947-71-69.
Patient registries are used to collect data on people with bleeding disorders, including disease severity, annual bleeding rates, treatment methods, adverse events, musculoskeletal condition, inhibitor status, comorbidities and quality of life. The registry generates analytical reports, and provide data for decision-making on procurement of medicines at the Ministry of Health level. In 2018, UAHARD together with the Centre for Haemostasis Pathology of the National Children Hospital OKHMATDYT created the first nationwide registry of patients with haemophilia and other bleeding disorders, which is now successfully functioning and being regularly updated. The registry now contains more than 2,500 records for children and adult patients.
Knowledge of modern methods of treatment of hemophilia and related conditions are important for effective health care to our patients. HaemAlliance constantly conducts various seminars, webinars, schools of hemophilia. In 2020, HaemAlliance translated into Ukrainian and distributed the book " Guidelines for the Management of Hemophilia." The author of the book is an international team of the World Federation of Hemophilia (WFH), which has worked diligently for several years on the content. This book has become a basic source of information for all doctors and patients in Ukraine.