Positive Voice in a rough terrain: A look back at the history of HIV/AIDS in Greece
Few know more about the history of HIV in Greece, its social impact and stigma, and the often inadequate and biased response of the state than Nikos Dedes, one of the founders of the association of HIV-positive individuals, named Thetiki Foni (Positive Voice).
By George Gilson
It was only when fashion designer Billy Bo (Vasilis Kourkoumelis), who catapulted to fame at a very young age, opened his own boutique on 5th Avenue in Manhattan, and was referred to in the Greek press as an Adonis or Apollo due to his beauty, and Alexandros Iolas, a world-renowned gallery owner and art collector who was friends with some of the towering divs in 20th century art, were diagnosed and died of AIDS that it drew public attention in Greece.
Beloved by the public and the darling of the Greek rich and famous, Billy Bo’s suffering and death at age 33 in 1987 brought an outpouring of sympathy. Iolas, who was better known to the international art world and the jet set, died five days earlier in a New York hospital.
Few know more about the long history since then of HIV in Greece, its social impact and stigma, and the often inadequate and biased response of the state than Nikos Dedes, one of the founders of the association of HIV-positive individuals, named Thetiki Foni (Positive Voice), which stepped in with its successful Check Point organisation to offer free, confidential testing when the state did not.
Dedes has for many years worked in the area of health policy. A graduate of Thessaloniki’s prestigious Anatolia College, he went on to study film direction at the Stavrakou School and worked in theatre and commercials. After he was diagnosed with HIV in 1995, he made public awareness and lobbying for the rights of HIV-positive individuals his mission.
In an exclusive interview with in.gr, tovima.gr, and tanea.gr, he details the longstanding indifference and bias at various levels of the state.
There were delays and tragic omissions in offering proper services to patients.
Politicians, despite the pleas of Thetiki Foni and other groups, and their own assurances, have yet to pass a law barring employers from firing HIV-positive individuals due to their condition.
The Greek Supreme Court vindicated an employer who fired an HIV-positive man on the grounds that his co-workers feared his condition (a very belated Philadelphia Story).
Earlier, in the 1980’s, one saw the egregious stance of then President of the Republic Christos Sartzetakis in refusing a pardon many years later for Christos Roussos, a young sailor who killed his lover who severely abused and pimped him.
The case had stirred an uproar in the then very conservative and homophobic Greek society due to the fact that both the killer and the victim were gay. The press ravaged him.
While the head of state never offers a public rationale for a pardon, Sartzetakis stated that he did not recognise the extenuation of [what Greek law refers to as] a “prior honourable life” because he was not only a killer but also a homosexual.
It was President Konstantinos Karamanlis who, amidst a groundswell of popular sympathy and support for Roussos when Konstantinos Mitsotakis was PM, pardoned him.
In the beginning, Dedes notes, there was even a refusal by the National Health System to offer health services to HIV-positive individuals and AIDS patients.
Much later, he stresses, for a number of years (2015-2019) the competent state laboratory – the National Retrovirus Reference Centre (NRRC) – amazingly would receive blood samples of HIV-positive individuals and never perform the requisite biannual viral load tests, provided for in both World Health Organisation and Greek guidelines. It simply received the blood samples, stored them, and did nothing.
The situation with HIV viral load testing started to become normalised, Dedes says, after February, 2021 (once a nexus of bureaucratic obstacles in both Greek and EU law and the red tape of the labyrinthine economic management system at Athens University was largely surmounted).
Since then, as the scientific coordinator of the NRRC, Athens University Medical School Assistant Professor of Epidemiology Gkikas Magiorkinis told in.gr, about 4,500 viral load tests have been performed at the laboratory.
Finally, in 2011, when HIV was introduced in the IV drug users’ community, there was a surge in cases because Greece was rock bottom in distributing syringes, the cheapest and most effective means of prevention. Dedes describes the situation as a case of “criminal negligence”.
Nikos Dedes’ no-holds-barred interview:
When did HIV/AIDS first appear in Greece and how have the state and society dealt with HIV-positive individuals and AIDS patients?
I think it was 1985 and the first diagnosis was made by Yannis Kosmidis. He was the patriarch of HIV research in Greece. He was an infectious diseases expert and served as director of the State General Hospital.
When Yorgos Gennimatas was health minister in 1988 he called on authorities to establish a national committee for managing HIV. Representing the Athens Medical Association, Apostolos Kaklamanis, who later became minister, participated. In 1992, when Konstantinos Mitsotakis was PM, they Created KEEL (Centre for Special Infectious Diseases Control, which was responsible for the management AIDS, sexually transmissible diseases, and hepatitis), which was later renamed KEELPNO (Centre for the Monitoring and Prevention of Diseases), and later again renamed EODY (today’s National Public Health Organisation).
Is the Greek state effectively managing the area of prevention?
Not at all. After a period of fear and terror, we observed that in the final analysis we would not be inundated by AIDS. HIV has been in Greece for 35-40 years and the cumulative number of cases is 18,000. So that was that.
Is the National Organisation for Public Health (EODY) effective in managing HIV/AIDS in Greece?
It had inherited the responsibility for HIV issues from KEELPNO and its precursor, KEEL, and its areas of responsibility have expanded, so HIV is considered a secondary matter of lesser importance as it represents an increasingly smaller sub-total of its competencies. HIV remained the responsibility of EODY on a series of issues that it should not have. [EODY is now responsible for the management of the COVID-19 epidemic].
What about health services, how have they been managed?
In the period when the National Health System refused to provide health services, KEL came along and said, “You don’t want to be involved with gays, with HIV-positive people? We will hire doctors and assign them to special infections units.” Today, there are 15 such units nationwide, including Iraklio, Crete, Volos, Larisa, Thessaloniki, and Alexandroupolis. They monitor the patients, give them their medicines and so forth.
Does Thetiki Foni directly offer aid to HIV/AIDS patients?
It is the association of HIV-positive people, comprised of the founders and 450 members. One need not be a member to have access to the services of Thetiki Foni.
When it was founded in 2008, the problem was not the absence of services, medicines, and diagnostic reagents. We wanted the government to adopt policies with which we could stem the spread of HIV. We wanted programmes and policies to protect HIV positive people from being fired from their jobs. We still don’t have such a law. We lobbied from the start and still are, but nothing has happened yet in this area.
What was shocking in Greece was the layoff of an employee because he was HIV-positive and the response of the judiciary. The case went all the way up to the Supreme Court, which ruled in favour of the employer. The decision at first included the employee’s name, which was then redacted. The rationale was the supposed protection of peace in the workplace. The employer maintained that he did not want to fire him but that all the other employees revolted. He told his employer and the employer told all the other employees.
This indicates a lack of understanding even in the judicial system. Some in Greece say a special law protecting HIV patients is not needed because there is already a law barring layoffs based on being handicapped. HIV-positive people get a state subsidy for the handicapped [abut 700 euros monthly], but the state does not protect their work status as “handicapped” individuals.
Do you think the Greek justice system is in general homophobic?
Yes, 100%. The judicial decisions demonstrate it. You had a President of the Republic who was a former prosecutor and judge [Christos Sartzetakis] who rejected a pardon for Christos Roussos [who was abused and pimped by his partner whom he murdered – he was 19 at the time] because he did not recognise the prior lawful life of any homosexual. He didn’t have to offer any explanation but it was a perversion of his judicial instinct to provide a rationale. The practice was not to offer a rationale for either affirmative or negative responses to pardon petitions.
The perceptions of judges are not more progressive than those of society at large. Judges are one of the most conservative segments of society.
On the other hand, the current President, Katerina Sakellaropoulou, issued an exemplary statement on the World Day Against Homophobia. We also had the recognition of same-sex cohabitation agreements [in December, 2015, under SYRIZA rule, providing several of the rights and benefits of marriage].
If you were to meet with PM Kyriakos Mitsotakis, what issues would you raise and ask him to take an initiative?
It would be the same things that we asked of him when he visited the offices of our Check Point Centre for the Testing and Prevention of HIV as main opposition leader in December, 2018, before the elections. Checkpoint was based on recognition of the problem that testing is the cornerstone, as it is with COVID-19.
The crucial point is that testing must be free, anonymous, and confidential. That is what I would request that the PM ensure.
Successive Greek governments agreed that it is necessary but they don’t do it. When under SYRIZA the issue was raised in Parliament, health ministry general secretary Yannis Baskozos and health minister Andreas Xanthos would be there and everyone agreed. We had a meeting on 3 December, 2019. The Parliament Speaker and the ministers agreed, and then nothing. We from Thetiki Foni have testified in Parliament.
Greece, however, is a state that is surrealistic. It is not enough to propose, show, and invoke the World Health Organisation.
What about the work of the competent National Retrovirus Reference centre?
There was a grotesque situation there over four years [2015-2019]. The laboratory itself is very good, but we are dissatisfied because while the WHO and Greek guidelines recommend viral load testing twice a year for all HIV positive patients, that has not been implemented.
In Greece, those tests were not performed regularly for four years. The NRRC lab does 20 percent of these tests. They took blood samples and did not test them. They were fooling the HIV-positive patients.
It should not have been the case that a test concerning the clinical monitoring of a patient is not being performed inside a hospital with the hospital’s own labs and that one has to go to the university.
If for reasons of economy of scale they want to have a central lab for a specialised test all right, but it is the same kind of test as the PCR test for COVID. There are 16,000 HIV-positive people and if half of them go to EKPA, they should be doing 16,000 tests a year.
It is not a matter of a lack of personnel. Employees – biotechnologists working in the labs – were being paid for years and were doing nothing.
What do you tell your European counterparts about the situation in Greece?
We tell them that what is going on is a disgrace. There is no other EU country in which such a thing is happening. It is also a failure of Thetiki Foni. What is happening is so glaringly unacceptable we should have been screaming that authorities are useless and incompetent.
What other pressures can you exert?
The issue is also journalism in Greece. You send the media a press release and I haven’t seen any journalists in Greece doing a follow-up with questions to the competent minister to ask why they have not fulfilled their commitment. The question back then was why are you taking blood samples if you are not going to test them?
One of the reasons we have not committed hara-kiri is that it is well known that for whoever is receiving their therapy, that therapy cannot fail. The doctor performs the test in order to confirm that you are taking your medicines.
Before the economic crisis, Greece had a large concentration of good doctors. The doctors and virologists who dealt with HIV/AIDS in Greece were heroes in a sense. Back then, they were mocked by their colleagues for dealing with these children of a lesser God. Because they were young people, in one sense their careers were advanced by this rapid development in the area of HIV medicines.
Back in the time of the KEEL, we had good units and good virologists. Until 2009- 2010, Greece was a good case of best practice, but even then we were somewhat on automatic pilot. The idea and response in the health system was that we were well enough not to pay sufficient attention. Greece was lucky in that during 10-year economic crisis we had the rise and actions of Thetiki Foni [established in 2009, when Greece was entering its Great Recession]. We first informed the gay community and soon after IV drug users.
The rough early years, support groups
Were support groups created?
In the first years the only thing we had was support groups. One of the most effective ones in Greece was the Centre for Life and Inspirational Living. The founder was a foreigner who was a member of AA. He focused on the buddy system where someone who was diagnosed earlier would help you. HIV-positive people would gather and take each other’s hand. There were many volunteers. It was inspired by AA
What is the situation with HIV-positive women?
In Greece, 20 percent of cases involve women. About one-third are migrants from countries where HIV is endemic such as sub-Saharan Africa. Another one-third were infected by bisexual men. Then another segment is IV drug users. In general it has been observed that sex workers did not have a high rate of HIV. They were careful because it is their trade. If they do not engage in anal sex the chance of their becoming infected is small.
Women who have been infected by a bisexual man tend to keep it secret. They have children. They are ashamed of their husband and about being HIV-positive. In Greece, this is one of the most closeted groups. You will either be considered a slut or stupid. The whole thing is embarrassing for them.
What happened with the management of HIV in intravenous drug users in Greece?
During the [decade-long] economic crisis our doctors went abroad. We had a ban on hiring. At that time we had an explosive epidemic among IV drug users, who in the beginning were not among the HIV cases. In the 1980’s, 1990’s and 2000s, we had zero cases among users. We were lucky because in Greece HIV had not been introduced to the community of users.
Mismanagement of Hepatitis C in IV drug users, the link with HIV
From 2005 until 2011, if you look at transmission of Hepatitis C, the rate of infection among users started with 40 percent and skyrocketed to 80-90 percent. Pretty much all of them were infected.
That is yet another failure and bankruptcy of Greece. Instead of establishing the cheapest and absolutely effective preventive measure of the distribution of free syringes, nothing was done.
We needed 2 million syringes, which costs less than 20,000 euros. Abandoned and left to their own devices, users shared syringes and were infected with hepatitis. None of them had HIV. We were lucky that way.
In 2011 however, HIV was introduced in the community, Greece was at rock bottom in distributing syringes. Some were distributed by OKANA (Organisation Against Narcotics) and KETHEA (Centre for the Treatment of Addicted Individuals).
Within one year and for 10 years in a row we had 10 users newly diagnosed with HIV annually. There were about 10,000 IV drug users in Greece. In January, 2011, we had more infections than all year in 2010. There were more infections in February than January. That happened every month for the whole year. There were 256 new HIV diagnoses among users in 2011.
In Greece, that was never announced anywhere by EODY because they were incompetent. It is a case of criminal negligence. In January, 2012, there was a higher number of HIV infections among users than any previous month. At the end of 2012, the initial 276 cases in 2011 reached 570. Until May, 2012, each month the diagnoses were more than any previous month.
To what do you attribute this?
I attribute it to the fact that as a country we are imbeciles, that we are secretive, that we are in denial and don’t want to accept or confront the problem. In May, 2012, shortly before the election, we were part of then health minister Andreas Loverdos’ sweep of HIV-positive sex workers. He published their pictures and names.