In the autumn of 2002 the Hungarian Civil Liberties Union (HCLU) submitted its opinion on a draft law connected to HIV/AIDS testing. The first version of the draft law would have contravened basic human rights in several ways, allowing, for example, mandatory HIV-testing of the families, neighbours or colleagues of PLWH. HCLU welcomed the new law, as it ensures the right to anonymous, voluntary and free HIV-tests in Hungary from January 1, 2003. According to the epidemiological chapter of the Law of Health Care and the Decree of the Ministry, anyone can ask for a test without disclosing their personal data. Practically this means that no personal data can be asked for (e.g. date of birth, initials, health insurance number) but the blood sample is labelled with a code that contains the licence number of the VCT (voluntary testing and counselling) facility, the date of the test and the serial number of the test for the day. The blood sample is sent to the laboratory with this code, and the results are given to the person possessing the ticket labelled with this code. HIV-tests can be asked for from any health-care provider, who is licensed to perform HIV-tests: Thus, in STI-clinics, at the National Centre for Epidemiology, in the Medical Officers’ Institutions, and in the Szent László Hospital, which has the only department dedicated to caring for PLWHA in the country. Besides these, there are foundations and NGOs that offer HIV-testing, most of them work in the capital.
Besides the blood test, counselling is also part of the examination, both before taking the test and on receiving the results. Counselling, among other reasons, is also important because different tests operate with different window-periods (the timeframe in which tests are unable to detect the virus in the blood, as antibodies need some weeks to develop). For this reason, it is important for the patient to understand and expect a certain delay between the date of possible exposure and accurate test results. Counselling should also include information about the ways of transmission, tools of prevention, risky behaviour and drug-using habits.
Thus, the conditions have been met for anyone to be tested for HIV free of charge and without handing over their personal data. However, even with these positive measures, the number of tests performed each year remains extremely low. With a testing rate of about 6,6 tests/1000 people, Hungary ranks among the very bottom when looking at the number of HIV-test in Europe by country. Among the EU-member states, only Poland (4,6 tests/1000 people) and Greece (1,1 tests/1000 people) have a worse performance than Hungary. Concerning non-EU countries, Hungary is performing as badly as the former-Yugoslavian countries (5,7 tests on average/1000 people) (source: ECDC-HIV report - 2007).
The reason for this low number of testing could be that the ideal situation, outlined by law, is not so ideal in practice. Only a very small proportion of the tests are done anonymously: in 2006, only 9,3% of all HIV-test respected the anonymity of patients (source: Ministry of Health, Hungary). Between the summer of 2008 and March 2009, the staff and volunteers of the Hungarian Civil Liberties Union visited several VCT-centres and some STI-clinics. During the visits, we checked the following criteria enacted by the law: the test must be anonymous, free of charge, and there must be counselling before testing and on receiving the results. Besides these basic criteria, we also observed some conditions which are not regulated by the law, but can influence people’s willingness to use such a service. These are office hours, the time delay for the results to be ready, and last but not least, the attitude of the medical staff. Although our study is not representative, as we could not visit all the testing facilities on several occasions, our experiences were shocking. We found violations of the law - lack of anonymity, paying for services - and serious problems as there was a lack of counselling.
Among all the facilities that we visited, only the service of Anonymous AIDS Association (AATSZ) met both what is required by the law and our expectations. The service is free of charge and anonymous and they do provide counselling. During the counselling, they provided information about all important issues – i.e.: ways of transmission, tools of prevention, risky behaviours - and they also defined and explained the window period of the test. It is clear that the staff has long years of experience, and trust builds easily with them. The results of the test are ready in 1 week, which is an acceptable period of time, compared to other centres where you sometimes have to wait weeks for the results. Office hours are also convenient, open from 5pm to 8pm three times a week, and there is also opportunity for testing for syphilis and hepatitis B and C.
The VCT-centre of the National Centre for Epidemiology (OEK) also meets the requirements set by the law. Blood tests are anonymous and free of charge and there is counselling, including some information leaflets. The results are ready in a couple of days, as OEK has a viral laboratory. However, there is a big disadvantage: the testing facility is open only on Tuesdays and Thursdays and for only one hour during normal office hours.
At the Medical Officer’s Institution the test was also anonymous, but there was practically no counselling, thus our volunteer received no information about the window period or preventive tools. Moreover, the results were ready in 2 weeks and the institution is only open during office hours, which makes it difficult to use this service.
In the STI-centre of SOTE (which is one of the most frequently visited testing facilities, mainly for immigration and work permit purposes) our experience was very similar. There is anonym testing and it is free of charge, but there is no counselling and it takes weeks to get the results. The nurse who performs the examination answers arising questions, but does not initiate conversation and in our opinion, a supportive smile and the sentence “Everything is all right” does not meet the requirements of counselling.
We were able to visit 3 of the STI-clinics in Budapest. The one and only advantage we can mention are the flexible office hours. None of the clinics secured anonymity, usually all personal data (name, address, date of birth and health insurance number) is recorded at the check-in counter. We asked for and tried to receive anonymous testing, but we were informed that clinics are only able to be reimburse the costs of the testing if they have the health insurance number of the patient. This practice is unlawful, according to the Decree of Ministry regulating HIV-testing “Voluntary testing can be taken without identifying oneself.”
In the STI-clinic of the 5th district, the results were ready in over 3 weeks and you had to ask for an appointment before. They ask for you Health Insurance Card and when our volunteer asked for anonymous testing, the nurse insured her that all her data would be handled confidentially. We cannot even understand what this sentence could refer to; any data concerning medical conditions is already protected by the law of data protection, and obligates medical staff to respect and uphold confidentiality, the breaking of which might result in criminal sanctions. We also found a serious anomaly on receiving the result. Our volunteer phoned the clinic to find out whether the results were ready, and the nurse gave her the results of the test over the phone, saying that if a certificate is needed, the clinic could also provide one, According to the law, results can be given only to the person who presents the number code to a specific test. The practice at the STI-clinic is flagrantly wrong from the point of data protection. Also there was no counselling; the doctor only asked for the reason for the test and no information was given about important issues.
In the STI-clinic of the 6th district our colleague tried to be tested three times. All three attempts were unsuccessful. At the check-in desk, the assistant did not know where to send the patient; she called the dermatology ward in front of all the other patients. Twice she was told, “The blood has already been taken away.” and on the third occasion the nurse suggested that she go to the STI-clinic of SOTE, as they had more experience.
A positive example worth mentioning concerns the staff working in the STI-clinic of the 8th district. They are nice, comforting and not only perform counselling, but do it very well. Unfortunately, anonymity is not ensured in the practices of this clinic either.
Finally we were shocked by our experience in Szent László Hospital. Our volunteer was charged HUF 3,000 (about 10 Euros) for the examination and they also asked for an ID. Free of charge HIV-test is a basic right in Hungary. In talking to the head of the laboratory of Szent László Hospital, which is the laboratory where positive test results are confirmed, we were informed that this service is not under the administration of the hospital, but is a service of the National Centre for Epidemiology. As the hospital with the only department dedicated to caring for PLWHA, this arrangement is highly irregular and a clear sign of administrative incompetence. The test results were ready in 2 weeks; the hospital does offer patients the option of taking a test which gives results faster, but it costs HUF 8,000 (about 27 Euros).
In Hungary, the number of new HIV-cases is constantly rising, at a rate of 30-50% each year. While in 2006 there were 81 new cases, in 2007 there were already 119; and last year we had a new record with 145 new cases. At the same time, the number of tests performed remains low or is even decreasing (explain this a bit...Preliminary numbers of the Health Ministry indicate that Hungary will not expect an increase in the number of tests performed and compared to previous years, Hungary is to expect a sharp decline in the numbers of tests performed in 2009) The majority of new cases are among young women and men, under 25. Another serious problem is that a significant portion of the newly diagnosed are late presenters, for some of them therapy is too late. To reduce these figures, we would need the development of the testing facility network, continuous professional training for staff and campaigns, both for the general public and target groups (MSM, young people, sex-workers etc.).
Anonymous and free HIV-tests are a very important part of the fight against AIDS, and should be available universally. Hungary has a National AIDS Strategy (2004-2010), in which the support of civil organizations working in prevention is highly privileged. However, there are very few NGOs working in this field and governmental support in terms of initiating and approving new programs, as well as actual financial support is diminishing year by year. The Strategy also includes a separate section that deals with the quality of counselling and the preparedness of the counsellors. As our experience has shown, the implementation of counselling services and the quality of counselling leaves much to be desired. For auditing these activities, a separate work group should have been established within the National AIDS Commission, which has not happened yet. The National AIDS Commission, which is responsible for implementing the National AIDS Strategy sat only once in 2008 and this year their first session was in late April, 2009. According to the Decree of Minister, establishing the National AIDS Commission, the Commission should sit at least four times a year. In 2008, only 10 million HUF (about 33,000 Euros) was spent on VCT for the governmental institutions and HIV-prevention of civil organizations was supported by 15 million HUF (about 50,000 Euros).
The present wrongs and often personally violating practices must be ended, and to do this cooperation between the Ministry of Health and the organizations providing prevention and VCT services is needed. This cooperation, at the moment, must entail the state recognizing that the allotted budget for VCT and prevention initiatives by civil society do not cover a significant portion of the work that needs to be done. This cooperation must also entail the Commission taking seriously its duties of oversight and seriously consider the professional opinions and reports it receives that outline the decrepit state of access, service and the habitual breaking of the law. In our opinion, the Ministry of Health does not consider the Hungarian HIV/AIDS-situation important enough and thus is unwilling to take the necessary steps to prevent a possible explosion in the number of HIV/AIDS cases.