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This article is part of Telescope: The New AIDS Epidemic, a deep-dive investigation into the modern face of a disease that transformed the world.
Michael Jettmar was facing a problem he didn’t expect to have after being diagnosed with HIV: He was struggling to make a dentist appointment.
An activist working for an NGO representing sex workers and living in Prague, Jettmar is required by Czech law to disclose his HIV status — and, it seemed, dentists didn’t want his business.
“Every time, the woman at the reception said, ‘I’ll call you back and ask the doctor if it’s possible,’” he recalled. Each time, the answer was no. Instead, they recommended he visit an HIV center for treatment. One receptionist said it wasn’t possible to treat his “kind.”
The process made him feel “dirty,” Jettmar said. He now goes to a town an hour away to get treated. He said he has to take a full day off at work because of the commute.
Nearly one-third of HIV patients in Europe have reported cases of discrimination from doctors, nurses and other health care workers, according to a 2014 study.
Jettmar’s experience highlights an uncomfortable reality for Europeans living with HIV. Decades after treatments were developed allowing those with the virus to live an almost normal life, the stigma attached to the disease persists — even among those charged with keeping people healthy.
Nearly one-third of HIV patients in Europe have reported cases of discrimination from doctors, nurses and other health care workers, according to a 2014 study looking at discrimination against people with HIV in health care.
Christiana Nöstlinger, a social scientist at the Institute of Tropical Medicine in Antwerp and the study’s lead author, notes that discrimination is more likely to occur in "non-HIV specialized settings."
It's among dentists, gynecologists and primary health care where "people are reluctant to even share their HIV status and disclose because of fear of discrimination," she added.
Dentists come up often in stories of discrimination.
A survey of HIV-positive people in the Czech Republic, for example, found that 42 percent of respondents said they'd been denied dental care at some point, according to Robert Hejzak, chairman of the board of activist group Czech AIDS Help, which conducted the research.
The stigma also affects vulnerable groups disproportionately. "We see more people with LGBTI background, [as well as] men having sex with men, which are the biggest group, and migrants coming from high endemic regions, who are also confronted by racism,” said Nöstlinger.
Another study, from France, looked at the bias against different vulnerable populations with HIV. It found that women from sub-Saharan Africa reported the highest levels of discrimination. Straight non-African men reported the least.
Go west, young man
In Europe, bias against sexual minorities living with HIV among health care workers is alive and well in the west but is especially prevalent in the east. There, in some cases, more conservative attitudes mingle with the vestiges of the Warsaw Pact’s stern and top-down approach to medicine.
The EU-LGBTI II Survey shows, for example, that in Poland, 58 percent of respondents always avoid holding hands in public with their same-sex partner out of fear of being assaulted, threatened or harassed, closely followed by Romania and Croatia at 57 percent each. By contrast, Nordic countries like Finland and Sweden report 13 percent and 15 percent, respectively.
There’s also a lot of ignorance about the virus, said Karol Ludwikowski, a pizzeria employee from Poznan, Poland’s fifth biggest city. He came out as HIV positive in 2015.
"People — even my friends —began asking me if they could kiss me or touch me," he said. "To me, that means any education about AIDS has been non-existent. It’s been swept under completely. It’s laughable and scary at the same time."
Alex Schneider is the founder of Life4me +, an organization dedicated to battling discrimination and preventing the spread of sexually transmitted infections. He's also a gay man living with HIV.
As a Russian of German descent, Schneider said he was initially committed to staying in the country where he was born. But he left for Germany in 2002, when he felt the situation was getting difficult to live in.
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For him, Germany and Austria are examples of forward-thinking approaches to HIV treatment. As he sees it, the further you go east, the worst discrimination becomes, with Russia at the opposite end of the spectrum when it comes to treatment of the disease.
Schneider, who gathers instance of discrimination through his organization, said that while complaints from LGBTQ individuals are clustered in the east, it's more common in the west for migrants to complain of bias. He said that the situation in Russia is particularly tough, forcing many people living with HIV to lie about their LGBTQ status due to fear of stigma.
“In Eastern Europe and the Soviet space, there’s still this police mentality that you need to control everything, that the patient has no rights" — Robert Hejzak, chairman of the board of Czech AIDS Help
"They say, 'I have HIV because of sex with women,'" Schneider explained. "They’re forced to lie because if you say you’re gay ... it’s your fault."
In the big cities like Moscow and St. Petersburg, private, gay-friendly clinics have sprung up. Many LGBTQ people prefer to go there, paying not insignificant sums for their peace of mind, Schneider added.
Soviet legacy
Schneider also points a finger at the legacy of the country’s past approach to health. “The problem of the medical care system in Russia is it’s still the Soviet system," Schneider explained. "And in the Soviet system, the doctor is God."
“You feel like you're a child, and they’re parents," he said. "They try to show they know better, and they show you that they are better than you because they don’t have it. That's really big pressure."
"If you also say you’re gay, you can’t imagine the pressure you get," he added. "I wouldn’t do it, especially in a small city in Russia."
Hejzak, of Czech AIDS Help, also blames the legacy of the past on the harsh treatment of LGBTQ individuals in his country’s health system. He views laws that require disclosure of HIV status to doctors, even for non-HIV related treatment, as responsible for holding back progress. In many Eastern European countries, these laws are still on the books.
“This is in contrast to Western Europe, which has by and large abolished similar rules,” Hejzak explained. “In Eastern Europe and the Soviet space, there’s still this police mentality that you need to control everything, that the patient has no rights."
While not as bad as Russia, the Czech Republic has its own issues with discrimination against the LGBTQ community, he added.
“None of the doctors publicly admit this ... but there’s a hidden stigma,” he said. “You can see it from [the] tone that [they think] gay sex is immoral and they deserve it from way they behave.”
The Institute of Tropical Medicine's Nöstlinger explained that stigma associated with HIV can have serious consequences, calling it "one of the biggest barriers to HIV prevention and the uptake of testing."
"People ignore the topic," she said. "They push it away out of fear that if they test they would have to be faced with a diagnosis, and all the consequences would rather not even know."
Fear of discrimination also can lead people to avoid going to the hospital or failing to disclose their HIV status when it would be good to know for the doctor to know in order to treat them better. It can also lead to an overburdening of HIV clinics as patients prefer their specialized doctors, who they know won't judge them, she added.
Changing attitudes
There are signs, however, that the situation is changing.
In Romania, HIV-positive patients still struggle to get specialized care not related to the virus, such as surgeries, noted Iulian Petre, the executive director at the National Union of Organizations of People Affected by HIV/AIDS (UNOPA). But there have been improvements in care for pregnant women who are HIV positive. They're no longer directed to a single maternity ward in Bucharest (which was temporarily closed due to a fire), but to a few other wards that have now gained experience in delivering their babies.
Furthermore, hospitals that specialize in infectious diseases have gotten better at treating all people with HIV, no matter their sexual orientation, social status or other factors, he said. Younger doctors also know more about HIV infections than was the case a decade or more ago.
"Even in the so-called LGBTI free zones in Poland, there’s an upswell of support ... and increased visibility of allies" — Cianán Russell, senior policy officer at advocacy group ILGA-Europe
Stanisław Żołądek, a Polish psychiatrist from Stowarzyszenie Jeden Świat (Association One World), an NGO helping people with HIV, said that attitudes among younger medical staff in Poland are also changing.
"Younger doctors are better educated about HIV and are less inhibited when it comes to asking patients about their sexuality,” he said. “On the patients’ side, social media facilitate circulating information about LGBTI-, migrant-, or addict-friendly doctors.”
Cianán Russell, senior policy officer at advocacy group ILGA-Europe, said that even in countries that are less friendly to LGBTQ minorities, it's important to distinguish between the "media conversation" occurring at the national level and local realities.
"Even in the so-called LGBTI free zones in Poland, there’s an upswell of support ... and increased visibility of allies," Russell explained.
"Projects like health for LGBTI don't necessarily depend on national implementation," Russell added. Instead, where the national government isn't acting, local medical associations or municipalities can step in. "So I wouldn't say that all hope is lost in those places. We just have to be more reactive."
Carmen Paun contributed reporting.
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