Hiv-treatment for immigrants in Sweden – access a struggle, but overall good experiences once contact established

“I was two months without treatment. At one point, I wanted to buy a ticket back to my home country and come back to Sweden with all my medicine. Not because of money, but I need the medicine.”

Moving to a new country is a big step in life. For people living with HIV, there are many things to consider, but maybe most importantly: how can I access antiretroviral therapy (ART) in my new living place? Positiva Gruppen Syd invited participants from South America, the Middle East, and parts of Europe to share their experiences of accessing ART in Sweden. 

The participants’ experiences of accessing ART in their home countries are mixed. Those from South America and Southern Europe reported an overall positive experience in accessing ART. They report appointments being easily booked over the internet and healthcare staff showing genuine interest in the patient’s concerns and health outcomes. Others, howerever, are not as lucky. One participant reported incurring high debt, receiving invoices of up to 7000 euros and dealing with cancelled insurance policies which led to them having to consult a legal practitioner for advice. One participant expressed frustration at long waiting times to receive healthcare while another was forced to leave his conservative country due to stigma and shame around living with HIV. 

“I was living all my life inside the closet, scared, cautions, sad, depressed, acting as if I am straight, and then adding HIV to it made it worse, so I had to fly away and disappear, and live the rest of my live at a safe place where gays are protected.”

Receiving adequate HIV treatment was not considered to be a main factor in moving to Sweden. Sweden was viewed as an inclusive and safe space for the LGBTQ+ community to live and work. In preparing to move to Malmö, a vibrant and culturally diverse city along the southern coast of Sweden, the participants had to be able to access ART once they arrived. The participants first noticed that the majority of health information available online was in Swedish. This can be challenging to non-Swedish speakers who need to access this vital information.

’You just don’t know where to look…’

Translation services are on the rise, but accessing information in English remains a fundamental barrier to accessing health information. One participant, who was lucky enough to have a supportive friend from Sweden, said the information was easy to access and understand (in Swedish), but still, it would be beneficial for the information to be made available in other languages. Still, uncertainties around ART access in Sweden resulted in many participants bringing large amounts of medicine into Sweden. After arriving, Vårdcentralen is a first point of entry into the Swedish Health Care system. Some participants experienced language barriers here as well. 

”When you call them, everything is in Swedish”

Others encountered English speaking staff, but struggled with the lack of guidance by Vårdcentralen staff. One participant talked about his HIV status but was not directed to the infectious disease clinic. Another participant was shocked after disclosing his HIV status to a staff member he was then referred to as ’…people like you’. The participants mostly felt it was difficult to have to repeat their HIV story multiple times to receive help from the right person.  

“In the end, don´t waste your time with Vårdcentralen. I called the emergency, – I mean, it was an emergency because I had no medication -, they guide you to the infectious disease clinic.”

The Swedish personal number is an essential part in the Swedish social system. Immigrants without a personal number often end up spending months waiting to receive social security benefits, although ART should be accessible and free to all. One participant was rejected by Vårdcentralen as he was still waiting to receive his personal number from the local Tax Agency (Skatteverket). Another participant recalls an experience of going to his appointment at the clinic and being stopped by the police. Since he did not have a personal number, the police began asking clinic staff members to confirm his appointment. Yet, staff members could not identify him in their appointment system. After several calls and a consultation with the clinic manager, the participant was finally able to attend his appointment. And the language barrier exists as well with the infectious disease clinic:

“I called the first number that appeared in Google. So you call the hospital, but you can’t navigate. I wanted to call the infectious disease division and ended up in the division of plastic surgery.”

But not all participants’ experiences were negative: one participant says he got his personal number within days of applying because the person helping him (who identified as gay, as is the participant) with his application provided better assistance after hearing his story. In the end, his process of receiving medication was much smoother. Overall, it becomes apparent that the personal number, permanent address and other things which are not yet secured in the process of settlement complicate ART access for immigrants. One participant reported a negative experience at the infectious disease clinic:

“They told me they couldn’t send me the invitation for check up via email or SMS only. They had to send me a letter. But I don’t have a permanent address. And I have not talked with my boyfriend about my status. What if he gets the letter?”

While better working and living conditions, overall lower stress and higher levels of social equality are some of the many reasons why people choose to come to Sweden, the process of accessing ART is certainly one that requires careful consideration. Most of the participants were under constant stress, and were often concerned about how this stress negatively affected their health. Nonetheless, once in the system, participants were overall satisfied with how the system worked. 

“Once you pass the filter, the system is great!”

The infectious disease clinic was praised for its caring and helpful doctors and nurses. But how can you ’pass the filter’? During our research, it became apparent that non-governmental organisations like Positiva Gruppen Syd can provide guidance for immigrants to access HIV-related information. Positiva Gruppen Syd can assist in helping non-Swedish speakers make appointments, providing the correct contact information and providing precise and clear information that can speed the entire process along. Beyond providing information, Positiva Gruppen Syd is a meeting point for people with HIV, specifically immigrants who are looking to find connections and share their experiences.

“A nurse told me about Positiva Gruppen Syd. It was close to Christmas, and I was lonely, so I went to a party there. I was very happy. It is a great place to connect with people who made similar experiences as you!”

Finally, the author created a table of the infectious disease clinics in southern Sweden to research if they offer English support with their automated call operator.

Infectious disease clinic – Name/UnitEnglish support included in automated call operator
Infektionsmottagning – Skånes Universitetssjukhus, MalmöNo
Infektionsmottagning – Skånes Universitetssjukhus, LundNo
Infektionsmottagning – Centralsjukhuset KristianstadNo automated call operator, thus dependent on nurse
Infektionsmottagning – Helsingborgs lasarettNo
Infektionsmottagning, Blekingesjukhuset, KarlskronaNo
Infektionsmottagning, Länssjukhuset i KalmarNo
Infektionsmottagning, Centrallasarettet VäxjöNo
Infektionsmottagning, Hallands Sjukhus, HalmstadYes

Author: Thomas Reinecke, student at Faculty of Medicine, Social Medicine and Global Health at Lund University. Published by Positiva Gruppen Syd on 2021-04-20.