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Updated: 27.08.2009 Hungarian Haemophilia Society in English |
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Hungarian Haemophilia Society The Board: Dr. Gábor Varga
president Adrienn Futács youth leader Attila Tóth youth leader E-mail address: mhe@mhe.hu Homepage: http://www.mhe.hu/ Postal address: 1538 Budapest, Pf. 529 Telephone: +36-30-570-4804 Our newsletter: Haemophiliacs’ Journal Official Reg. No: 3170 Bank account: IBAN: HU43
11707024-20272630-00000000 Swift code: OTPVHUHB Tax number: |
The Hungarian Haemophilia Society
was founded by Tamás Pelyhe with the assistance of Prof. Lajos István in
1990. At present, the HHS has 460 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 physicians and by applying all
possible means available for civil organizations the HHS' work was devoted
for and succeeded in achieving considerably better haemophilia care in the
last two decades. The Hungarian Haemophilia Society
has successfully represented the long term interests of the Hungarian
haemophiliacs. Even in absence of sufficient resources, our society has stood
for the interests of haemophiliacs with its wide-ranging activity. We could
significantly contribute to the development of haemophilia-care in
Hungary in the last decade. Lobbying
for better haemophilia care and factor supply 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 (7,3 FVIII IU/capita in 2009). The Society had a major
contribution to the current wide acceptance of prophylaxis; home care
treatment (since 1998); and to the battle for HCV-compensation. 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. Development
of factor supply in Hungary
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. Partly due to our
efforts, the factor VIII supply has been increased from the close to zero
level in 1990 to 7,3 I.U. per capita in 2009. 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. In
2009, 73 million factor VIII and 4,9 million factor IX products were bought: ·
Factor VIII: 74%
plasma-derived (Humafaktor-8, Haemoctin SDH, Octanate), 26% recombinant
factors (Recombinate, Kogenate FS, Advate). ·
Factor IX: 100%
plasma-derived (Humafaktor-9), recombinate FIX unfortunately is not
available. About
20% factors are produced from plasma given by the Hungarian unpaid donors. Hungary
has an own factor-manufacturing capacity, this factor (Humafaktor-8) is made
under licence of Beriate-P. The
Hungarian Health Ministry is responsible for choosing and bying
factor-concentrates which are bought in an annual central open tender based
on the recommendation of the National Haemophilia Centre. The haemophiliacs
have to pay neither for the medicines nor the treatment since both are
entirely covered by the Social Security Fund. Currently,
there are 18 centres providing haemophilia care in the country. The test for
possible carriers of haemophilia and for prenatal diagnosis are also
available. In case of suspicion of haemophilia, the pregnancy can be
terminated free of charge. The home care has been introduced in 1998 and it
became common by now. Prophylactic treatment, mainly for children, was
introduced in 2001. Disseminating
information 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. We also strive to provide information
to the healthy population about bleeding disorders and infections (HIV,
hepatitis). We issue booklets, video tapes and organize medical conferences
in the country two times a year. Since December 2000, the Hungarian Haemophilia Society has been
maintaining own website in Hungarian, English, French, Russian. The home page
is regularly visited by about 300 persons every month which also represent
the necessity and importance of our efforts giving information for the whole
society. In this meaning, our work has long-lasting benefits for both
haemophiliacs and healthy people. The Hungarian Haemophilia Society has been organising summer camps for
haemophiliac children at the Lake Balaton every year since 1992. Till now
more than 600 kids participated. This 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. We organize two blood donation days every year,
till now we collected 1933 units of blood. Our contribution to the national
blood donation program was appreciated and awarded by the Hungarian
Government in 2007. International
relations Soon
after its establishment, the Hungarian Haemophilia Society became member of
both the World Federation of Haemophilia and the European Haemophilia
Consortium. As the official national member organization, our society has
always been very active in the work of the WFH and EHC. Since 2009 the HHS
also member of European Organization for Rare Diseases (EURORDIS).
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, and we built a close connection with our neighbours (Austrian, Slovakian and Romanian Haemophilia Associations) as well as the other Hungarian patients’ organizations. The founder president of the HHS, Tamás Pelyhe was elected into the executive board of WFH between 1998 to 2002. In 2000, at the WFH Congress in
Montreal, the Hungarian delegation proposed a WFH statement about
HCV-compensation, which was adopted by the General Assembly. Financing The
activities of rhe Hungarian Haemophilia Society have been achivied by
voluntary unpaid work of our volunteers. We have very limited financial
resources, annual budget of the HHS is about 25,000 EUR. Our incomes:
application for state grants, corporate and individual donations, offer 1% of
personal tax, members fee. No one in office gets any salary in the Society. HCV and HIV infections and treatment The present health care system provides the best possible treatment for HCV and HIV infected haemophiliacs in Hungary. Every haemophiliac has 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. There are 24 hepatological treatment centres in the country. Pegilated interferon-ribavirin therapy was introduced in 2001 for experimental aim, and by now it is free and available for haemophiliacs. Liver-biopsy is not required for patiens with bleeding disorders. 28 haemophiliacs have been infected with HIV which is appr. 1,5% of the Hungarian haemophiliacs (in Western-Europe this rate is 70-80%) due to cryoprecipitates made from the national plasma. All haemophiliacs were screened in 1986. All HIV/AIDS-patiens are treated at the Department of Internal Medicin (directed by Dr. Dénes Bánhegyi) in Szent László Hospital, Budapest. 19 HIV-infected haemophliacs died till now. In the frame of HAART, almost all modern medicines are available for the anti-HIV therapy in Hungary. Both medicines and treatment are free of charge as they are paid by the Social Security Fund. In the mid 1990s, HIV contaminated haemophiliacs got about 3.000.000 HUF (10.000 USD) one-off compensation and 30.000 HUF (100 USD) monthly allowance. No mad cows infected by BSE have been found in Hungary till now. According to decision of the government, the screening is compulsary for all slaughtered cows since 1st June 2001, but the examination in fact began in 20th September, 2001. Total number of the Hungarian cow-livestock is appr. 800.000. The government appointed a ministerial commisioner to supervise this issue. Under Hungarian provisions the only health and controlled beef-meat can be imported from abroad to Hungary. Neither BSE in animals nor new variant of Creutzfeldt-Jakob disease (nvCJD) in human were found in Hungary yet. At present the occurence of the classical form of CJD in Hungary corresponds to the international data (1: 1 million/year). It has to be added that the beef-consumption – except fast-food restaurants – is not so common in Hungary as it is in the foreign countries, instead of this, the pig-meat consumption is popular. The Hungarian Haematology Society issued a statement in 2001 in which they declared that there is no potential danger in Hungary because the national blood is collected very carefully and blood is strictly controlled by the all available tests. The Hungarian Haemophilia Society also consider the importance of this issue especially from the point of view of the safety of blood products. Unfortunately nobody knows precisely at the moment the manner of the transmission of prion from animal to the men. Therefore carefully observence is necessery to avoid the possible danger. We completely agree that all cows cut-offs ought to be examined by the best available tests in all countries even if the price of the beef becomes more expensive. HCV-compensation for haemophiliacs The compensation process began in 1997 on the ground of the provisions of the Act on Public Health (22. § of Act of 1972: II.) which had been in effect in the time of infections. Under this Act, the Government is obliged to give compensation for them whose health has been injured by or died as a result of their treatment. Compensation has to be paid in accordance with the regulations of the Hungarian Civil Code. The Suprime Court held that the government has to bear strict liability which means that it has to pay compensation even if the infection is not attributable to it. The Hungarian legal system does not recognize so-called „actio popularis” by which a civil organization would be entitled to bring an action before the court on behalf of its members, therefore everybody would have launched proceeding alone. In order to avoid these sensless acts, the Hungarian Haemophilia Society endeavoured to reach a settlement with the government, but unfortunately our letters and prepared proposals had never been taken into account. Till now more than 100 persons brought an action for compensation by lawyers’ assistance. The court has already awarded compensation for four haemophiliacs, and they have got 3.000.000 HUF (11.538 USD), its interest and 15.000 HUF (58 USD) monthly allowance. The other plaintiffs’ cases are still being in judicial process. In the end of 2000, after four years of continual postponement, the Hungarian government adopted a resolution on an uniform and voluntary compensation for haemophiliacs contaminated with hepatitis C virus. The government was willing to pay compensation for all patients with bleeding disorders who infected with HCV through blood products. By this decision each haemophiliac who became carrier of the virus, would be entitled to get an one-off 500.000 HUF (1923 USD) compensation and monthly allowance of 8.000 HUF (30 USD) provided that applicants renounce the right to initiate a law-suit. The haemophiliacs whose liver disease has already developed would get 2.000.000 HUF (7692 USD), and monthly allowance of 12.000 HUF (46 USD). The ministry is to inform everybody involved about the possible amicable settlement and after decision the money would be transferred in weeks. At the meeting of the General Assembly of HHS, the offer for compensation mentioned above was discussed. It was widely agreed that the amount of the given compensation is too small. There was consent that each haemophiliac must decide individually either to accept or reject this settlement. Our efforts for HCV-compensation at international level It is widely well-known that serious efforts and legal steps have been taken in many countries over the world for enforcing rights of haemophiliacs who had been infected by hepatitis C virus for getting compensation for their damages caused by HCV to their health. For accelerating and supporting this process in the world, in 2000 the Hungarian delegation proposed to the General Assembly of the World Federation of Haemophilia to adopt a declaration by which WFH would recognize that the haemophiliacs’ claim for HCV compensation is lawful, fair and equitable, and this declaration would express that the Federation urges all national hemophilia associations to stand for HCV compensation by applying every available means. In 2000, at the General Assembly of WFH in Montreal, the Hungarian delegation submitted its proposal to adopt such a declaration for HCV-compensation at international level. The following suggestion was presented: "On behalf of the whole hemophilia community of Hungary, the Hungarian NMO sends a proposal to the General Assembly regarding HCV compensation. In several countries around the world hemophilia societies are working for compensation of the PWHs contaminated by HCV. We are asking the delegates that the GA vote a motion to make possible for the WFH Executive Committee to draft a Statement of WFH on this issue. Such a statement must be carefully prepared and could be approved by a mail-in ballot after the Congress." The 97% of the General Assembly supported our proposal and entrusted Executive Committee with preparing WFH statement on this issue. As a result of our proposal the following resolution was unanimously approved on 24th May 2002 by the 77 countries present at the XXVI General Assembly of the World Federation of Hemophilia in Seville: „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.”
Haemophilia treatment centres in Hungary In Budapest
National Haemophilia Centre "Országos Haemophilia
Központ" Országos Haemophilia Központ, Állami Egészségügyi Központ,
Budapesti Felnõt Haemophilia Regionális Központ Children Haemophilia Centre "Budapesti Gyermek Haemophilia
Gondozó / Heim Pál Gyermekkórház Madarász utcai Kórház (GYHG)" 1131
Budapest, Madarász Viktor u. 22-24..; Tel.: (1) Tel: 4450-37-00 In the country Haemophilia centres in
countryside: Abbreviations: FHG = Ambulatory Haemophilia Clinic for Adults GYHG = Ambulatory Haemophilia Clinic for Children FH = Hospital availability AIDS screening and consulting Anonym AIDS Consulting Service Budapest, XI., Karolina út 35/B.; Tel.: (+36-1) 466-9283 Opening hours: Monday, Wednesday, Thursday: 17- 20; Tuesday, Friday: 9- 12 Health Service of Józsefváros Budapest, VIII., József u. 46.; Tel.: (+36-1) 303-4490 Opening hours: in every working day: 8-12 AIDS Help Foundation Sopron, Magyar u. 14.; Tel.: (+36-99) 333-399 Opening hours: Thuesday, Wednesday: 17- 20 Help-call (free from Hungary): 06-80-333-399; working days: 17- 20 E-mail: aids@axelero.hu, Internet: http://www.aidsinfo.hu/ AIDS Treatment Centre Szent László Hospital, Department of Immunology 1097 Budapest, Gyáli út 5-7. Director: Dénes Bánhegyi MD Tel.: (+36-1) 455-8152 Fax.: (+36-1) 455-8254 Pluss, the Hungarian Self-Help Organization of HIV-Positive People 1097 Budapest, Gyáli út 5-7. Postbox: 1450 Budapest, Pf.: 29 Tel.: (+36-1) 455-8100, Fax.: (+36-1) 455-8254 E-mail: plusshiv@eqnet.hu, Internet: http://www.pluss-hiv.hu/
The Hungarian Haemophilia Society is a non-profit organization, considered of “high public interest” by the Hungarian Law since 1998. This acknowledgment is owing to our work and results in the last ten years. Under these circumstances if someone gives any financial support, his pecuniary assistance is deemed as a public donation under Hungarian Tax-Law. The grantor would indicate the aim and allocation of his grant, otherwise the Board of the Society has right to decide on spending the donation. The Personal Tax Act gives an opportunity for tax-payers in Hungary for freely disposing on 1% of their tax on personal income to any social non-profit organization. Our book-keeping is controlled by an indepent certified auditor in every year. If you support our society in any kind, you contribute for achiving the aims set up by the Hungarian Haemophilia Society. On behalf of the Hungarian haemophiliacs, let us express our thankfulness for your great help. Bank-account of the Hungarian Haemophilia Society is the following: OTP Bank Rt. 11707024 – 20272630 – 00000000 OTP swift code: OTPVHUHB |