Hungarian Haemophilia Society was founded by haemophiliacs in 1990. At present, the HHS has 580 members. Our society is a non-profit organization, considered as a „high public interest NGO” by the Hungarian Law since 1998. In co-operation with the medical community and by applying all possible means available for civil organizations, the Hungarian Haemophilia Society considerably contributed to the success of haemophilia care and factor supply in the last two decades.
E-mail: firstname.lastname@example.org; Homepage: www.mhe.hu
Postal address: 1538 Budapest, Pf. 529, Hungary
Lobbying for improving haemophilia care and factor supply
In 1990, at the time of the foundation of HHS, the haemophilia care in our country only consisted of cryoprecipitates and other virally non-inactivated products. Patients and health care providers had constant problems with the insufficient supply and low level of the treatment. The cryoprecipitates were withdrawn in 1993, and since then safe plasma-derived concentrates have been applied for the treatment of haemophiliacs. Development of quantity of the factors for haemophilia is an outstanding successful story in Hungary.
The Hungarian Haemophilia Society had an essential role in the introduction of virally inactivated factor concentrates (1993) and establishing the current safe and outstanding factor supply (7,2 FVIII IU/capita in 2010). The Society had a major contribution to the current wide acceptance of prophylaxis; home care treatment (since 1998); and to the successfull battle for HCV-compensation in 2000. As patient advocates, we participate in the annual factor procurement tender. At present, we are struggling to increase the percentage of recombinate products and to protect the current high level of factor supply in Hungary.
Health Security Fund is responsible for choosing and purchasing factor-concentrates which are bought in an annual centralized tender based. The patients have to pay neither for the medicines nor the treatment. Currently, there are 19 centres providing haemophilia care in the country. The test for possible carriers of haemophilia and for prenatal diagnosis are also available. The home care has been introduced in 1998 and it became common by now. Prophylactic treatment, mainly for children, was introduced in 2001.
Hungarian Haemophilia Society has been publishing a Haemophiliacs’ Journal (Vérzékenyek Lapja) since 1997. It contains the latest medical news and issues concerning our association and work. It is printed in 1400 copies and sent to patients, hospitals, treatment centers, universities, decision-makers and libraries as well. The Journal is free of charge. We issue booklets, video tapes and organize haemophilia symposium and conferences. Since December 2000, the Hungarian Haemophilia Society has been maintaining own website in Hungarian, English, French, Russian.
Summer camp at Lake Balaton
Since 1992, we have been organising summer camps for haemophiliac children at the Lake Balaton. Till now more than 600 kids participated. The camp gives children a good opportunity for rehabilitation, learning self-infusion, education prophylaxis, making acquaintances and meeting each other. The camp is free of charge.
Contribution in organizing blood-donation
We have been taking active part in the national blood collection program by organizing voluntary donation events since 1995.
Since 1991, the Hungarian Haemophilia Society became member of both the World Federation of Haemophilia and the European Haemophilia Consortium. Our Socity got membership to European Organization for Rare Diseases in 2009.
The EHC held its annual meeting in Budapest in 1994, and the WFH’s 3rd Global Forum on the Safety and Supply of Hemophilia Treatment Products was also organized in Budapest in 2003. Between 1992-1996, the HHS had a fruitfully twinning relationship with the Irish Haemophilia Society. In 2000, at the WFH Congress the Hungarian delegation proposed a WFH statement about HCV-compensation, which was adopted by the General Assembly.
HCV and HIV: prevalence, treatment, compensation
All best possible treatments are available free of charge for HCV and HIV infected haemophiliacs in Hungary. Haemophiliacs have been tested for HCV and HIV, and more than 50% has been vacinated against hepatitis B. As a result of using virally non-inactivated plasma and cryoprecipitates in the past, about the 90% of the haemophiliacs have been infected with hepatitis C virus.
28 haemophiliacs have been infected with HIV which is appr. 1,5% of the Hungarian haemophiliacs due to cryoprecipitates made from the national plasma. All haemophiliacs were screened for HIV in 1986. Till now 19 HIV-infected haemophliacs died.
In the mid 1990s, HIV contaminated haemophiliacs got compensation.
As a result of the Hungarian Haemophilia Society's constant fight, in 2000 the Hungarian government adopted a resolution about compensation for haemophiliacs infected by HCV.
Our activity for HCV-compensation at international level
As a result of the proposal of the Hungarian Haemophilia Society, the following resolution was approved by the General Assembly of the World Federation of Hemophilia in Seville, 2002: „The WFH recognises the pain and suffering caused to people with Haemophilia and related bleeding disorders by iatrogenic infection with the Hepatitis C virus. WFH calls on all governments to make available suitable recompense to all those infected and their families.”