Tech & Rights

HIV Data in Hungary Reveal Only the Tip of the Iceberg

It looks like HIV disease data have reached a critical point in Hungary, making professional decision makers realize the problem is more serious than meets the eye.

by Hungarian Civil Liberties Union

The National HIV/AIDS Working Group (NAWG) that held its constituent meeting back in December has already drafted a National HIV/AIDS Policy Program. So now we have effective and innovative prevention methods to stop the spread of the HIV disease, if we decide to do so.

The statement in the title was made at the constituent meeting of the NAWG by a staff member of the Office of the Chief Medical Officer to characterize the trajectory of disease-related data in Hungary. In this case, the iceberg’s tip represents the officially registered data, referring to the number of AIDS infections and deaths. For a long time, these figures served to substantiate the persistent claim by health officials and experts that the situation of the disease in Hungary is favorable: the number of cases is low and the few hundred infected patients are attended to according to European standards. Moreover, medical treatment is freely accessible for all insured patients.

Haunted by the past – “AIDS is a killer”

Prevention campaigns at the end of the 1980s and in the early 1990s generated some knowledge and awareness of HIV/AIDS in Hungarian society. Unfortunately, the early prevention programs used threat as a tool, resulting in an association between AIDS and death that is still widely held. Also, in focusing on groups most affected by the disease, like gay men, early campaigns increased the stigma of members of already vulnerable groups, while also developing a sense of false safety among the majority.

For many years, notwithstanding a few exceptions, prevention programs, supported by meager state funds, were implemented by civil organizations working with target groups that qualified as facing increased HIV-related hazards according to the classical classification. It was only on the 1st of December, International AIDS Day, that the majority had a chance to hear anything about HIV, though reports, representing “gay and bisexual men” as the only risk groups of HIV, were rather sparse even on that occasion, which further soothed any concern among the majority of people.

The little knowledge regarding HIV/AIDS that is still available in society is based on outdated information.

A decade of ostrich policy

The emergence of effective medication in the mid-1990s had an even more decisive effect on reducing both social and healthcare interest towards HIV. The slow increase in the number of cases – speeding up to reach a yearly increase of 30-40% by the second half of the 2000s – continued to be dismissed by decision makers as well as some experts. They could afford to neglect these developments as reports managed to pacify the public by simply including news about how wildly the disease was spreading in Africa or the post-Soviet states east of Hungary. The attitude was essentially that there's nothing to worry about, that there are around 60-70 new cases discovered each year but that this does not indicate to any significant growth.

Although an agreement has been reached with respect to the goal of maintaining a stabile situation, the state and the successive governments gradually withdrew from HIV prevention. First, in contemplating idly how almost nothing was realized from the strategic goals, they left the national coordination body to operate as a proxy. Then, after the end of the period of the first National AIDS Strategy, they failed to come up with a new one. Finally, the National AIDS Committee was abolished, and the government in charge “forgot” to announce an HIV prevention tender for civil organizations in 2012. This left youths entirely helpless. A research study conducted by the National Health Development Institute highlights that, despite their early sexual engagement, young people know very little about HIV and other sexually transmitted diseases.

The iceberg’s tip

Eventually, the menace that a few professionals and, especially, civil organizations used as a “scare” (according to government health officials) became a reality: after a period of steady increase, the number of new cases doubled in five years. Newly diagnosed HIV infections exceeded 200 in 2012 and, even worse, the number of AIDS contractions has also doubled. HIV infection remains latent for several years or even decades, without causing any typical symptoms. In the absence of medication, however, the AIDS condition necessarily develops, involving typical symptoms such as severe infections or tumors. At this stage, the increasing number and relatively high percentage of patients diagnosed with AIDS as compared to the rate of HIV infections indicates that there is a significant number of people unaware of their HIV status.

We all know that the tragic fate of Titanic was not because of the iceberg above the water's surface, but rather the massive and unseen ice mountain beneath it. Unfortunately, even according to the most optimistic estimations, the critical part of the Hungarian HIV disease is represented by the 50-60% of undiagnosed cases still unknown to both healthcare and disease professionals. International professional literature keeps reporting for many years now that in Western Europe, where the rate of undiagnosed cases is only 20%, a significant percentage of new infections – 3 out of 4 cases – is caused by people with HIV who do not know they have it. The reason for this is that the viral load of HIV patients diagnosed in time and treated with success falls below a calculable level, eliminating their infective capability. By contrast, people with HIV who are undiagnosed, especially those at the early stages of the infection, have a viral load reaching into the millions, involving significant risk even in cases of oral sex, which is otherwise considered safe.

Early diagnosis and optimal treatment – solution to combat the disease

So we have an “iceberg,” the visible part of which has grown big in recent years, while nobody knows how “massive” the part is that sits out of sight, under the water's surface. The recently prepared policy program is much more modern and progressive than its predecessor, the National AIDS Strategy. It refers to prevention methods and testing techniques, applied with success abroad, that, for incomprehensible reasons, have so far been kept in silence by professionals. There are rapid tests out there, working with 99.9% precision and providing results in 15 minutes, even from saliva. Yet these methods are not applied in Hungarian healthcare institutions and testing departments. From time to time one comes across rapid testing, e.g. at the Island Festival, however, the mainstream practice is still extremely medicalized, involving a waiting time of as long as several weeks for the result.

Besides hindering the development of AIDS and ensuring a long and full-value life to people with HIV, anti-retroviral treatment (ARV) is also known for significantly diminishing the risk of transmitting the HIV infection. A research project supporting the Swiss Recommendations issued in 2008 showed a 96% effectiveness; ever since, practice has proven that people with AIDS whose viral load is below the calculable level do not infect anybody through sexual intercourse. (The equivalent data for condom use is 85%.) And yet, ARV is rarely even mentioned as a treatment as prevention (TasP) in Hungary. ARV can be used not only by people with HIV, but also by those exposed to the risk of infection as a kind of post-exposure prophylaxis (PEP). Even though its effectiveness can reach 100%, depending on the time passed since the potential infection, in Hungary PEP is made available only to healthcare employees who have suffered an accident causing vulnerability to infection. Pre-exposure prophylaxis (PrEP), i.e. the use of ARV therapy in prevention, has also just begun getting mentioned in Hungary, while in the US its costs are being covered by insurance plans. According to the iPreX research, and contrary to public opinion, PrEP working with 99% effectiveness is not used by people having a hazardous sexual life, but is used by couples with different HIV statuses and employees at trauma surgery departments.

The introduction of these innovative prevention methods is not simply a question of money. The use of rapid tests and PEP/PrEP or the expansion of preventive treatment requires a change of attitudes and participation in training both by healthcare employees and prevention professionals. Continuous dissemination of information and awareness raising for the entire population - especially members of vulnerable groups - are also indispensable.

So now we have an ambitious draft policy program; what remains to be seen is whether it will attract political will and professional support, and if sufficient human and financial resources will be made available for its implementation. Otherwise, we are going to share the same fate as the unsinkable Titanic.

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