Cross-generational conversation about HIV at Malmö Art Gallery (Malmö Konsthall)

Panelsamtal om hiv på Konsthallen i Malmö

In Malmö Art Gallery (Malmö Konsthall), Linda, Simon and Steve met listeners in the C-hall to talk about HIV over generations. The conversation provided an overall picture of HIV over time and what it is like to both live with and live close to HIV. The panel discussed, among other things, its first encounter with HIV and shared its own experiences from different eras. The panel discussion was part of the collaboration between Malmö Konsthall and Positiva Gruppen Syd and arranged in connection with the exhibition “Leonilson – Drawn: 1975–1993” by José Leonilson, which can be viewed at Malmö Konsthall until 10th of October.

Participants in the panel discussion

Steve Sjöqvist is from Gävle but now lives in Stockholm. He has lived with HIV for 34 years and has appeared in several documentaries and articles where he tells about his and others’ stories with HIV.

Linda grew up with two parents who lived with HIV in the 80s and 90s. Today she works at Positiva Gruppen Syd.

Simon Blom has lived with HIV for 10 years and has been active in the HIV movement in Sweden since 2012. He currently works at Positiva Gruppen Syd.

The conversation began with the participants in the panel describing their first encounter with HIV.

Please note that this conversation is largely based on a historical perspective of HIV. There are still challenges to living with HIV, but with treatment, HIV today is not a deadly disease.

Steve:

“What I think about is how strong I felt. I got my HIV message in 1987 and I had been abroad, in Saudi Arabia and the United States, it was an active time in my life, and when I came home in 1987, I came home and felt powerful, it made me powerful in receiving an HIV diagnosis. “

Linda:

“I was a child of parents living with HIV, so I do not remember exactly the first meeting, but they told me during some time in the late 80’s. But my meeting was a meeting of concern, I was worried that they would pass away.

I am a parent myself today and I am amazed at how my parents were able to take steps forward, despite the circumstances. Among other things, I saw how my father went out fishing to find strength. At the same time, I know that as a child you take responsibility. As a middle school child, I replied that I would become a researcher, I would find the cure for HIV. I grew up in a small community and I did not see the other children taking, or having to take, that responsibility as children. “

I had no answer to that then but I just ran damn fast during those years

Steve:

“I was going to write a book called Fotspår, 2008-2009, and was in contact with Johanna who got HIV when she was 20 years old. I was so touched by her story and it was so nice to be able to think and tell someone that you do not need to inherit my experiences, follow in my footsteps. It was very healing for me. It also became so clear what I had struggled with, I wondered all the years 1987 until 1995 when I started to get sick, how I managed to live all those years. I had no answer to that then but I just ran damn fast during those years.

At the same time, Johanna was wondering, among other things if she would find someone to live with, and we still have contact, now on Facebook because she lives in Gothenburg and has two very sweet children. So, of course, there are generations, and that’s why we’re sitting here. We must understand what happened in 80s and 90s in order to understand the times we are living in now.

We can go on to compare both with the Holocaust and the Finnish children of war, and how these other events and stories, often skips a generation, it is such a deep trauma for those who have been through it themselves, its only when others ask the silence is broken many of the stories appears and comes into light..

So conversations like this are so important, and I’m happy, I feel proud to be able to sit here today and I think it’s so good to have conversations, because it’s not a given at all. “

Simon:

Simon “I thought that maybe, to give a little context to everyone who is here today. HIV was discovered in 1981 and 1982 the first case was discovered in Sweden. So next year it is 40 years since HIV came to Sweden , and the first treatment came in 1996. The situation has changed a lot over time, for example regarding the infectiousness that you can see on the cookie jar that is behind us.

We also have the duty to inform status, which has changed over time, that people today do not have to tell after they have achieved a well-adjusted treatment, and not to mention the medicine that today is significantly better than before. The hope is that those who get HIV today can get medicine early, so they live can live normal lives, at least that is the hope. “

Steve:

“Yes, absolutely, the medicines, I remember the first medicines, me and my husband Bengt were in Mallorca and you know I vomited in bushes and trash cans, I even had a diaper on me. I do not know, but Linda, your parents, how did they experience this? “

Linda:

“My parents did not tell me specifically about the effects of the medication, and that was perhaps what I missed most, and what is most clear from then and today, is that today we can listen to podcasts, we can talk and be more open, and I missed that opportunity back then, I had so many questions, and I felt I did not want to burden my parents with that anxiety.”

Simon:

“We talked a bit about it before we started the conversation here today, about this silence, I know that the families I met, there is still a great deal of silence, and even if we sit here today and talk, the silence somehow still prevails. We are all activists in some way and have made active choices and all, but I think it is still present in many people, that silence. “

“How have you dealt with your shame, because I really have tried to stand up for myself?

Steve:

“I think it’s also the driving force, the shame and the guilt. I’m a bit anti-stigma, because that was something we invented there, but guilt and shame are such classic concepts, in relation to not be ashamed.

At the same time, I make this reflection when I work, I work at a large emergency hospital. I think people are lying in hospital beds – ashamed.

“Well, here I am,” someone says. Yes, here you are, I say, but it’s good that you’re here, you’re sick!

How have you worked with your shame, because I really tried to stand up for myself, even if it was not done in a jiffy and I had parents who stood up for me and supported me, and I knew that. “

Simon:

“Since we’re still talking about this with generations, Linda, you’re in a generation after Steve, and we’ve been talking about openness, and for you it’s been an ordeal to have this conversation today.”

Linda:

“Yes, undeniably, it was a trial, I have not talked about this publicly before and I noticed that I had a strongly internalized stigma. Especially the silence, what I got imprinted from home – do not talk about this with anyone, and I think it was a survival strategy for my parents in the 80’s, and it has continued with me. I have not, before this, wanted to open that lid and it has been a process, to understand that it is not my fault and shame, it is not anyone’s guilt and shame. “

Simon:

Simon I remember, I was 24 when I got my HIV diagnosis, and figured out I could not lie, people asked me what had happened, I got sick right away in a pretty severe primary infection . Lost 10 kilos in a short time, almost crashed, it went that fast, although it was unusual. I had no power, nothing left, I was so bad. When we talk about people, we can compare those who never get sick and get medication, and with myself, I compared myself to the older generation, to your generation, Steve, who had no medication in the beginning. So I inherited more from the older generation, and that was also how my surroundings saw me. I then felt that it was something shameful, I should be healthy and that notion affected me.

I was also pissed that people in the health care system said that we should be silent about it, about all things HIV really. Even though I or we did not belong to your generation, we would inherit this legacy of shame. And I chose to stand on the barricades, but I also know that after a few years I wondered if I regret this, no one thanks me for this, maybe I should change my name and change my career and go after what I really wanted to do. Is it worth this, more than the people you have met and touched, which are many, but it also has its price. “

Steve:

“This is what I was thinking, on March 9 we got our first covid patient at St Göran, then I do not even remember the date, but all of a sudden whole wards were full of covid, and I thought but hey here I probably need help, I have a parallel story that is being played out I told my co-workers. And it’s so much the same scenario, I think of this when you tell me you got sick right away. It was like covid was just like those who came in and had contracted pneumocistis pneumonia, a HIV-related pneumonia, in the 80s and 90s.

It has been very strange.

It has really changed, because when I got my diagnosis, then we were the ones that no one wanted, no one wanted us, drug addicts, gays and like prostitutes. Then I think that I and we can get a fresh start, in the middle of this with covid, to work with those who have not been desirable.

Then, like what you say Simon, was if it worth it. I think about this too sometimes, just like you say. I have been so public with having HIV, but it may be a little different there as well, between generations. “

Simon:

“Yes, we have had this image of a special target group of those who get HIV, that we early categorized people as risk groups, it must be counteracted today, that not only certain groups get HIV, or corona for that matter.”

Steve:

“Yes, isolating all 70 plus folks I think has been so damn provocative, it’s age discrimination and how you look at old people. We do a bit of the same thing as with HIV in the 80s, but in other guises, and it will create stories that are certainly being written and told about in the future, and we should take action on that. “

Simon:

“Linda, I was thinking about this, back to a little bit of the openness and silence, how did this silence change over time? Did it become a different mood, for example, when your parents were given medication.”

“It might have been a way for my parents to protect the family from even more exclusion”

Linda:

“The silence continued, we lived in a small community on the west coast. And there were probably several reasons for the silence, we were the only racialized family so maybe it was a way for my parents to protect the family from even more exclusion. And sure there is research on when to tell, but then it is also the parents’ choice. But parents need to feel safe to break the silence and feel safe with the situation in preschool, with playmates etc. I am thinking, for example, of one of our contacts, I work in Positiva Gruppen Syd, where a parent is open and lives with HIV, and I get so happy when I see that strength and pride, because I did not feel that when I grew up and it gives back to me a lot, that I can see in others, what I did not have, this I will not be ashamed feeling. “

Steve:

“Yes, oh Linda, I am completely taken by what you tell me. I think all of us who sit here, we probably know a lot, but there is so much work left to do, this with undetectable – untransmittable, power structures, the work for women , a very important task – HIV is a gender issue. “

Simon:

“You were inspired there, almost a little spiritual, Steve. How have you have dealt with HIV, on a personal level, internally. There are a lot of conflicts in a way, how we deal with difficult situations. But how has your spiritual journey been?”

Steve:

“Yes, and I look back here when I was interviewed once. A journalist came to my house. I have been interviewed several times and been in three documentaries, but this time, at my house so… she asks me to watch me in the mirror. Then it was like pulling down my pants on me, and I just could not hold back then. Then I said that I see that I have sad eyes, I carry a very heavy grief. I see it in others too, I works with pastoral care, but there are far too many who carry around that grief.

I remember when I turned 35, and my parents wanted to give me a trip around the world, and I said, I just want a big party instead, I probably wont turn 40. But you can not run away from yourself, and now I am older and what has been means more and I can see it more clearly. And that journalist, I can see what she did to me and how she did to make me talk about these things, opening that door to the soul. She had a code.

Then I have this outlook on life, even though I am secularized, I have gained a lot of strength in taking a little bit at a time and being able to rest. Have confidence in something of a good force. “

Simon:

“For me it becomes clear, there is a sadness about having to go through this, there is a silence, in our community, but somewhere at the same time a strength.”

I have to raise my voice a little more then – it is not reasonable to live in silence

Steve:

“Yes, very strong strength, now I feel the activist in me coming out. I remember, in Luleå I believe it was, at Sunderbyn Hospital, and a man came up after a lecture and said” I came here because I have read what you wrote, but only my doctor knows that I have lived with HIV for 25 years. “And that, I think, it is not reasonable to have to be silent like that. There I also saw a deep sadness, and I thought , I have to raise my voice a little more then – it is not reasonable to live in silence.

I would like to ask you Linda, I was so deeply touched, your parents are no longer alive, and what do you think about that? “

Linda:

“Jaaa, my parents are no longer alive, my mother died in 2009, 46 years old and my father three years ago, he was 64. It is difficult, a grief. It is, I think, something that everyone who lost someone carries, no matter if its one or two parents. My grief is a bit rooted in the fact that they could not reconcile with their diagnosis, and they had been physically, mentally, financially affected after the 80s and 90s. I would have loved to see more of my parents, without the weight that HIV meant and put on them. At the same time, I have also had to face my pain and my grief, and I realize now that it is also very liberating to be able to forgive myself, partly because we did not have a great relationship, I understood that they might not be so happy with their parenting and we lived very long with a parallel grief together, I knew they would go away, they knew they would leave us, and my mother not get to see grandchildren, but she still bought clothes for them and it is one of the most precious things I have today. Today, I also understand them through the encounters I have with others living with HIV, and I carry with me their love and mine. My children do not yet have the whole story about their grandparents, it is part of our common story and they will one day find out. It is a mixture of sadness, memories and love, which I think can coexist. “

Question from the audience:

“You are still here, you probably know many that you lost, have you thought about why you are still there? And that they did not get the chance?”

Steve:

“Yes, this with survival guilt. I got antiretroviral drugs in 1996, and six months later they closed half the ward, and six months after that they closed the whole ward. But then there was a room where you went to get day care, and I did not get healthy right away. In that room, there were four of us, one guy was blind and ……. the other two had HIV related problems, it had affected their brains, then it was me who was just in pain, I got morphine and I could walk around with my drip stand, the others could not, and I had to help the others with a little bit of everything, visits and so on, but in the end it was just me left, it was just me who survived.

This to get involved in others, somewhere I think it was a consolation and a strategy for survival. Other peoples fate and stories, it touches me, it becomes a protection against becoming a victim, or seeing oneself as a looser, it gives me a different perspective on myself. It’s like I feel I have a responsibility to others. “

Antibodies against Covid-19 after vaccination – Three new studies provide promising results for people living with HIV

Antikroppar mot Covid-19 efter vaccination för personer som lever med hiv

Uplifting results from the UK, South Africa and Israel. Both AstraZeneca and the Pfizer / Biontech vaccine generate antibodies to Covid-19 in people living with HIV.

The UK study

54 people with HIV between the ages of 18-55 with undetectable virus levels and at least 350 CD4 cells received two doses of the AstraZenenca vaccine. Doses were given at four to six week intervals.

The group was followed for 56 days and test results were compared with a group of 50 people who did not live with HIV. No differences were seen between the groups in how well antibodies developed or how well they worked in neutralizing Covid-19.

The researchers found that AstraZeneca’s vaccine generally worked just as well in the group of people living with HIV as without, but that more data are needed for people with HIV who have CD4 below 350 or measurable virus levels.

Source: papers.ssrn.com/sol3/ papers.cfm? abstract_id = 3829931

The South Africa study

A group of people with HIV received either two doses of AstraZenenca’s vaccine or a placebo. The people with HIV in the study had CD4 levels between 512 – 929, were on average 40 years old and all study participants were on treatment for HIV. A majority had been under treatment for HIV for more than five years. 99 people with HIV completed the 42-day study and were compared with a group that did not live with HIV, a group that was slightly younger on average (32 years).

The study measured how well people with HIV developed antibodies. The results after 42 days, when the second dose was given, showed no differences between people with or without HIV, in the ability to develop antibodies to Covid-19. However, the researchers, like their colleagues in the UK, requested more data for people with lower CD4 levels.

Source: www.researchsquare.com/article/rs-322470/v1

The Israel study

143 people with HIV between the ages of 24 and 84 were included in the study. On average, the group had lived with HIV for 13 years, but the range was large, from living with HIV for less than a year to 36 years. Almost 20% had at some point been diagnosed with AIDS. Notably, 15 people had CD4 levels below 350, a group that was not represented in the studies in the UK and South Africa. All study participants were on treatment for HIV.

The 143 people received two doses of Pfizer / Biontech vaccine a few weeks apart and were compared with a group of people without HIV. Two weeks after the first dose, a majority of both groups developed antibodies to Covid-19. However, people with HIV developed fewer antibodies. After the second dose, 98% and 99% of the groups had developed antibodies, respectively, and on average a fivefold increase in antibodies was detected.

The subgroup of people with HIV with CD4 levels below 350 had developed high levels of antibodies after the second dose. Hence, there is an indication that even immunosuppressed individuals, with lower CD4, benefit from vaccination.

The researchers also noted a small decrease in CD4 levels in general in the group of people living with HIV, which is in line with what has been observed in other studies. That is, white blood cells decrease somewhat in connection with a vaccination. However, no changes were seen in the immune system and its function as the relationship between CD4 and CD8 did not change. In other words, it may be normal to see a small dip of CD4 after vaccination.

Source: papers.ssrn.com/sol3/papers.cfm?abstract_id=3829650

Comment:

None of the studies have been peer-reviewed, but the observations still give uplifting and positive signals that the various available vaccinations work well on people living with HIV. We are waiting for more studies and there will probably be more during the summer and autumn.

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.

“Your openness about HIV can make life easier”

openness about hiv makes life easier

Vinh Phillips is a person who is driven, goal-oriented and wants to live life as it is. He was born in Viêt Trì, Vietnam and at the age of six months he was adopted into his new family in Gothenburg. He is now 25 years old and is about to start studying for a bachelor’s degree in gender studies in Sydney Australia, where he lives with his boyfriend Stephen.

Growing up as an adoptee, and coming out as a gay as a 10-year-old became challenging both internally and for his immediate surroundings. Since sexuality was not something that was openly talked about at home, he already as a 14-year-old began to seek contact with like-minded people on various nternet sites to exchange experiences and thoughts.

“That adults listened to what I had to say was new to me and it built up a trust, confidence and closeness that I had never felt before.”

After 6 months of chatting with a guy, Vinh and the guy decided that they would meet. The meeting did not turn out as he had imagined when it turned out that the guy was not a like-minded guy, but an older man. Fearing that he had already shared who he was, where he studied, trained and lived, he did not dare to reject him. The initial meet-up turned into several repeated meetings of abuse over 2 years in fear of what the man would reveal to others and about the fear of rumors and sharing of conversations on the internet.

After a while, Vinh fell in love with an older guy he wanted to tell his parents about. It did not go very well. Without understanding from his parents, he moved as an 18-year-old from his small hometown to Stockholm.

One morning the phone rings ..

“I was sitting on the subway from Kista to T-Centralen, the job shift would soon start … it’s ringing. Hi it’s… from RFSL, we want to announce that you have HIV. Do you want to come in and talk about it? My whole world collapsed and I felt a panic attack creeping up. I did not understand anything and did not know to which of my relatives I could turn. “

From that day on, he chose a career, an apartment and training, and that became the focus. “I did… What is expected of an adult… Because most of the time people felt sorry for me. I was always open to others because I did not want anyone to see me as young and weak, I wanted to prove to others and myself that I am strong and independent. ”

Because of his upbringing, Vinh has had difficulty trusting people around him, and has often taken control of others in relationships. The relationships and the trust in people and what people have taken from him have shaped him more than he himself wanted. It is only now that he feels that he is the one who owns his sexuality, his mental health and his HIV.

“My boyfriend in Australia loves me for who I am which has helped me appreciate myself, what I feel and that my past does not define who I am. For me, it is important to be genuinely happy. ”

However, the need for control over situations has made it easier for him to be open about having HIV. He describes it as easier for everyone to know than to have to tell one by one, because then he feels no shame or that he is carrying a secret.

“Discrimination because of your openness to HIV, sexuality, ethnicity or any other reason, it depends only on their ignorance.”

The journey to a good future has been about accepting his past and finding himself and his roots from Vietnam. Today he has met his biological family, and found mutual love in a relationship.

“For me, it took several years to realize what I went through, I created my own reality and took all the responsibility to be able to move on, but it just buried everything. I was afraid to tell my full story, because I felt ashamed and did not want anyone to look down on me or think I was wearing a sacrificial cardigan. For me, the whole thing is de-dramatized when I dared to be open to myself and realize that I can be who I want to be, today I feel an enormous freedom. “

Vinh has three pieces of advice if you are living with HIV:

  • See your medicine as any vitamin or mineral tablet.
  • Remind yourself that anyone can get HIV, you are equally worth regardless of status, and can live a completely normal life and everyone has their own responsibility for their sexual health.
  • Dare to be open. You will in all probability encounter rotten eggs, but it is also faster to sift them away. Being HIV positive is not something you need to hide, it is not a shame and should not have to be a secret you choose to reveal to a few people. Your openness about HIV can make life easier for other people but above all for yourself.

“… today I want to work with helping others and by telling my story and being open with my HIV status helping others not to feel lonely and dare to open up.”

Regards Vinh 🙂

News from the CROI2021 conference: Osteoporosis, mental health and more studies on HIV and Covid-19

Report from CROI2021 Positiva Gruppen Syd

CROI or Conference on Retroviruses and Opportunistic Infections has just ended. Like many other conferences, it became a virtual one. Here are some of the news presented at the March 6-10 conference.

Alendronate prevents osteoporosis

People who started treatment for HIV with the drugs TDF, emtracitabine and a third different drug, who also received Alendronate, showed fewer tendencies of osteoporosis.

Osteoporosis is a complication that mainly can affect older people living with HIV. Medicines, such as TDF, tenofovir disoproxil fumarate, which are found in Truvada as well as several other antiretrovirals, are also known to cause osteoporosis. Osteoporosis itself can lead to lower bone density and, in the worst case, bone fractures.

In a study of people who started HIV treatment, 70mg of alendronate was also given once a week in tablet form. The results showed, compared with a group not receiving alendronate, that the group receiving alendronate increased bone density (as opposed to osteoporosis) in the lumbar spine during the first 24 weeks and the first 48 weeks in the hip bones. The group that did not receive alendronate, on the other hand, showed signs of osteoporosis.

Comment:

Physical activity has previously been shown to increase bone density and proper diet and smoking cessation have also been shown to relieve osteoporosis. Because alendronate is already approved, it may be another tool to improve bone health, especially in the elderly living with HIV.

More info and a link to the study can be found here:

https://www.aidsmap.com/news/mar-2021/alendronate-can-prevent-bone-loss-people-starting-hiv-treatment

Digital mindfulness lessons help reduce depression and anxiety

Depression, anxiety and loneliness can affect anyone living with HIV, but older people are at increased risk. In the study, which was conducted in the United States, people living with HIV over the age of 50 participated in digital mindfulness lessons. The purpose was to find out if this type of intervention can reduce depression, anxiety and loneliness. In the pre-recorded lessons, the participants received, among other things, breathing and relaxation exercises aimed at reducing stress. Participants gained access to 14 lessons via mobile, computer or tablet.

The results showed after 25 days that both depression and anxiety decreased, compared to a group that did not participate in the lessons. However, the results were ambiguous when it comes to loneliness.

https://www.aidsmap.com/news/mar-2021/depression-anxiety-and-loneliness-can-be-improved-mindfulness-audio-lessons

Comment:

Especially during the Covid-19 pandemic, we need all types of interventions that can support and boost mental health. These results are interesting and shows that it is possible to make a difference digitally, perhaps not entirely unexpectedly that loneliness did not improve significantly, when you did not meet others.

HIV affects, but relatively marginally – Two large studies on HIV and Covid-19

Both the UK and the US provided studies targeting people living with hiv and Covid-19. Until now, there is no consensus on exactly what risk HIV poses in getting or becoming seriously ill in Covid-19.

The study from the UK was based on 69 cases of people with HIV who were admitted to a hospital due to Covid-19 last year. These people were compared with other equivalent patients, not living with hiv. The results showed that people with HIV who were hospitalized did not have a higher risk of dying, however, the time to recovery was longer.

Underlying diseases were found to play a greater role than HIV, and people with HIV who were hospitalized had more underlying diseases than those who did not live with HIV.

The study from the USA included 2,932 people with HIV whom tested positive for Covid-19. The study looked at the risk of being admitted to a hospital, which turned out to be higher for people living with HIV than people who did not live with HIV.

Here, too, underlying diseases played a major role, organ transplants, previous cardiovascular diseases and kidney disease all entailed an increased risk of being admitted. The researchers concluded that despite the role of the underlying diseases in being admitted, HIV was a risk factor for needing hospital care due to Covid-19.

Comment:

More time and more studies are probably needed to determine the risks for people living with HIV and how HIV affects the course of the disease with Covid-19. Regardless, I think many with me feel that it is nice that the risks are not sky high to become seriously ill in Covid-19 compared to people who do not live with HIV.

https://www.aidsmap.com/news/mar-2021/underlying-health-conditions-play-major-role-increased-risk-hospitalisation-covid-19

Take the leap! Nominate to Positiva Gruppen Syd’s board and influence the future of living with hiv in southern Sweden!

Styrelse annons 2021

Do you want to contribute towards a better life with HIV? Share your experiences, learn new perspectives and collaborate with others towards shared goals?

On February 25, 2021, the Positive Group South will hold its annual meeting. You now have the chance to nominate yourself or someone else to be elected to the board.

The board usually meets nine times a year and has an ongoing dialogue, aided by digital tools. Meetings take place on the association’s premises in Malmö or on a digital platform.

In addition to tasks of a board, the assignment gives you the opportunity to influence the direction and organizational priorities for the coming years, network with other associations and organizations and more.

Nominate yourself or someone else by contacting the nomination committee at benny.roth50@gmail.com

Merry Christmas and a Happy New Year! A 2020 reflection and changes in opening hours

Merry Christmas and Happy New Year 2020!

With most of 2020 in the rearview mirror its time to sum up the year. We thank all members who choose to be part of the association (together we are strong!), partners, collaborators and all of those who supports the cause for a better life with HIV, as well as all other organizations or individuals who in some capacity work for people living with HIV.

2020 has been a different and eventful year, here is a reflection on some selected areas and events that took place during the year.

Politics, policy and our rights

The Social Affairs Committee voted in February to review the Communicable Diseases Act and the duty for people living with HIV informing partners of their status. As we already have a precedent in the Supreme Court and changed rules of conduct, much has already been gained, but the work of starting a recast of the law has yet to come. With the Public Health Agency’s abundantly clear announcement from 2019 and the parliament majority for an overhaul of the law, there is a strong mandate for change. However, the government’s response and lack of sense of urgency on the issue is poor.

Development and change are also needed regionally. In the report Sexuality and health among young people living with HIV in Sweden , which the Swedish Public Health Agency published during this year’s World Aids Day, young people with HIV wants more knowledge about their rights and how they can live a more open life with HIV. When asked about their needs, “meeting other young people with HIV” ranks third (behind free condoms and information about rights). The needs reflect previous studies as well as the observations we have made and continue to make in the entire target group. To receive information on how to meet others who live with HIV should be a right, and the hiv healthcare system needs to adapt and accommodate this need.

Covid-19 and HIV

When Covid-19 made its entry during the spring, many wondered how this affects us who live with HIV. Are we a risk group? The studies on the subject, to date, indicate that HIV alone does not significantly affect the severity of the disease. That is, people with HIV do not get corona more easily and do not experience more severe illness. Of those who live with HIV and have tested positive for the corona virus, all of those we know are doing well. As both Covid and HIV are infectious diseases, our access to care has also been strained and limited for periods of time, and infectious disease doctors, serving those of us who live with HIV have also been involved in the work with Covid-19. In addition to the purely medical consequences, the pandemic has also led to an increase in isolation and loneliness. Many have become aware of the value of social activities, and what impact it has on our health.

Meetups and social activities

Despite the pandemic, we have done a lot of fun things during the year. In the month of june we went on a horseback riding excursion in Söderåsen National Park. Many who have not been in this area were probably surprised that Skåne is not just fields and flat land!

As a substitute for the drop-in meetups we had arranged during the spring, we arranged city walks in Malmö. On one occasion we visited Malmö Museum, we also made several visits to the lovely Slottsträdgårdens Kafé at Kungsparken. During the summer we had the chance to welcome several new members to the association. It has been extra fun to meet those who have recently arrived in Sweden and learn about living with HIV in other countries. It also feels great that these activities can serve as a plattform for people to find each other and establish contacts that they can then develop themselves.

The big activity of the autumn was a feel-good weekend in Tylösand. We enjoyed peer exchange, great food and a good time in the hotel’s spa, right up until closing time. The weekend was one of the highlights of the year. We were lucky enough to spot a period when the spread of infection was low, and with a few simple rules of conduct, it was an infection-free event in every sense!

With the stricter restrictions that were then introduced locally in Skåne during the autumn, World Aids Day was moved to the streets. The day became a week, the event “World Aids Day goes World Aids Week” was born and lasted from November 23 to December 1. We reached 7,971 people online and our partner stores were visited by just over 7,000 people during the campaign. With the graffiti wall and the visibility with the scarves, we hope that people have opened their eyes and hopefully learned something new about HIV. The reaction from the public has been greater than last year, and the collaboration with the other organizations has made HIV visible in places and in channels that we otherwise wouldn´t have the chance to use.

We also remember 2020 as the year when Hans left us. A great sorrow and loss. A friend who has been faithful to the association for a long time and worked to make us who live with HIV feel a little better. We remember Hans both in the personal conversations and when he went around schools all over Sweden to talk about HIV. We take what you gave us with us and during the holidays we give Hans a thought and hope he is well wherever he is now.

Your support matters – Looking forward

We look forward to 2021 with confidence, a year we want to fill with optimism. Do you want to join that journey !?

You are more than welcome to get involved. Give your support by becoming a member or activate yourself as a volunteer or peer! Feel free to read more about the different paths here: https://www.pgsyd.se/en/become-a-member/

For those of you who are already members, to also be a member for 2021 – Swisha SEK 100 to number 123 655 4422 or bankgiro 576-2844. Mark the payment “Member 2021”. Thank you for your support!

Opening hours during Christmas and New years holidays

The office will close from Wednesday 23 December and the business will reopen on 4 January. During this period we only read emails sporadically and are not available by phone.

Wish all of you a great 2021. Take care.

Positiva Gruppen Syd

Missed out on our World Aids Week? Here is a summary!

Various activities during World Aids Day in Malmö with Positiva Gruppen Syd

This year’s World Aids Day morphed into World Aids Week, a week of campaigns and events aimed at raising awareness of HIV.We were physically present at several places in Skåne and also ran an online campaign.

Here is a summary of our activities.

Kristianstad

The shop window on Stadsmissionen’s Second Hand along the pedestrian street Östra Boulevarden was decorated with our #Ingenrisk campaign from 23/11 to 3/12. Meanwhile, there were also materials in the form of postcards and Red Ribbon pins at the checkout, which the staff wore on 1/12. The store kept two tank tops (or rather cut t-shirts!) after the campaign, maybe they are available to buy in the store?

In time for World Aids Day, the statues on Lilla Torg were also decorated with red scarves and #Ingenrisk tags.

Malmö

We decorated Stadsmissionen Skåne’s three stores at Värnhem, Triangeln and Mobilia between 24/11 and 3/12 with the campaign #Ingenrisk. Something we did not expect was that visitors to the shops asked if our t-shirts were for sale. Said and done, the shirts were then sold at a production cost and the money went to Peo’s Scholarship 🙂

This is what the store in Mobilia looked like

…and at Värnhem

And Triangeln

The Red Cross store and café by Folkets Park was also decorated.

We thank Gabi and the staff at Skåne Stadsmission and Anna and staff at the Red Cross Malmö for a great collaboration! 🙂

Ossian Theselius helped us with a really cool graffiti painting and the graffiti wall at P-Huset Anna got a new look.

On World Aids Day itself, several statues in Malmö also received a red scarf and a tag. Here are some examples

Lund

The statue of children playing at Central Station and the statue outside the Institute of Cultural Geography looked like this during World Aids Day:

Helsingborg

Along Drottninggatan and in front of Dunkers Kulturhus, statues were decorated with red scarves and the tag #Ingenrisk. In Helsingborg we also got a chance to talk about HIV and AIDS with citizens of the city, fun!

In media and online

In addition to the campaigns in stores and in the city, several activities took place online.

Simon was interviewed for P4 Malmöhus – Link

And also for the blog Konsten Att Vara Människa – Link

Michael shared his story with a blog post on our webpage – Link (Swedish) / Link (English)

Part 2 of 2 in the miniseries with Diana in the podcast POSITIVT was published – Link

We also interviewed Alexandra Arrhén, who was awarded the Peo Stipend for this year – Länk

We thank everyone involved, the 114 people who participated in the event through Facebook, everyone who liked and shared posts on Instagram and Facebook and everyone else who somehow raised World Aids Day. See you next year!

Alexandra Arrhén awarded the 2020 Peos Scholarship

Alexandra 2020 vinnare av Peos Stipendium

Positiva Gruppen Syd awards the Peo Scholarship for the year 2020 to Alexandra Arrhén.

“We are happy and proud to award this year’s scholarship to Alexandra. Peo’s Scholarship is about drawing attention to efforts, both everyday and exceptional, for people living with HIV, by people living with HIV. The year 2020 has tested us both as individuals and as a collective, therefore positive, uplifting initiatives and examples are needed, and this year’s scholarship recipient contributes with that, “says Emanuel Karlström at Positiva Gruppen Syd.

During the year Alexandra was nominated by her mother with the following nomination:

“Our daughter Alexandra was born in 1995, the same year that Peo died and is a fantastically happy and positive girl who received her HIV diagnosis in the autumn of 2018. She had traveled for a long period and in bliss and love became infected. After an initial shock, Alexandra took the message with great composure and has since become involved and disseminated information as well as worked hard to reduce the stigma surrounding HIV. Alexandra is training to be a nurse and has a vision to continue to spread information and to help and inform in places in the world where knowledge about hiv is less widespread. Alexandra is well worth all the scholarships in the world! We love her! ”

We called up Alexandra for a chat a few days after we announced that she will be awarded the scholarship.

Hi Alexandra, how does it feel to have won the Peos Scholarship 2020?

Hey! I was both happy and surprised at the same time! I read about Peo after I got the news and it feels so fun to be noticed, even though I do not think I have done so much. Overall I feel very grateful.

You were 23 when you were diagnosed with HIV in 2018 and it was your mother who nominated you for the scholarship. What have your parents meant to you in dealing with the diagnosis and in continuing to be yourself after the diagnosis?

A lot, mom was at the youth clinic were it all started and when we booked a visit to Huddinge hospital, dad was also there. So from day 1, they have been with me. It has been very important. I trust them and look up to them when I have questions and such. I had my own fears in the beginning, but my parents got educated themselves and pushed me to go to conferences for young people with HIV. So it has been super important to have them with me, you could say that what concerns me also affects them.

When did you first come in contact with others with HIV after your diagnosis? And what did that mean for you?

It was about three weeks after my diagnosis that I got to go to the HIV conference for young people, we were probably about 30 people. I made friends with a guy from there and we have bonded. I think it’s a lot because he got his diagnosis just a year before me and that we both share other interests, such as traveling.

Then it was obviously nice to meet all the others in the beginning who were in the same situation. I felt a bit ashamed in the beginning, that I brought this on myself, but people who had been born with HIV said that neither you nor we who were born with HIV have asked for this. Sure you got it after unprotected sex, but people have unprotected sex all the time. So it was nice to feel that we were still in the same boat so to speak, and not there because we specifically chose it ourselves.

What did it mean to, as in your case, quickly get in touch with peer contacts and others living with HIV?

Now I got in touch with other peers relatively quickly, but it would probably have been good to get a contact directly. For example, my mentor that I got later, if she could have been there a little earlier and maybe prepared me for the conference and welcomed me into different groups. Even though I got in the loop in three weeks, a lot happened, the infection tracing and the whole bit, so yes a contact early is very important.

But I also know others who have had to wait for over a year, and my friend I mentioned earlier had to wait for over a year. Then he did research himself and found others who lived with HIV.

You are studying to become a nurse, how do you see your future, what do you want to do?

Right now I’m in the gynecological ward and it’s very exciting, and it’s probably mainly women I would like to work with or young people. So I see myself working either as a midwife or maybe at a youth clinic. Then I also think it’s very exciting this with people’s own experiences of being sick, and for me, of course then, HIV hits home.

For example, I was in Ethiopia at the beginning of the year and met an organization that worked with HIV to teach me how it works there, how to think about HIV, sex and so on. They thought a little differently, both people who live with HIV and the organizations that work with HIV, I thought that was very interesting. So in the future maybe interview people and dive deeper into these issues, that would be fun!

We thank Alexandra for the chat!

What is the Peos Scholarship? – Per-Olof ”Peo” Persson was 1989-1993 chairman of Positiva Gruppen Syd and a pioneer in drawing attention to HIV and AIDS. He did this both in southern Sweden as well as nationally, as vice chairman of RFHP (National Association for Hiv-positive people, current Hiv- Sweden) during 1991-1993. Peo died in 1995 and since 1996 a memorial scholarship has been awarded in his name. Read more about Peo and the scholarship here: https://www.pgsyd.se/en/peos-stipendium/

Member stories: Michaels story “When My Life Changed”

Michael became a member in november, here he tells his story, a reflection of  change, living with hiv since 1985 and how he ended up in Malmö.

It was 1985, AIDS had only just begun to be discussed and I remember sitting around with friends and talking about how horrible it would be to contract this disease. A few months later, after weeks of diarrhoea, I was diagnosed with AIDS at the age of 25 – wasn’t called HIV back then, it was AIDS – the killing disease, the Gay killing disease.

My world ended. I expected to die the next week. We knew nothing about Aids except that it always killed you. I remember sitting in a clinic waiting room with other newly diagnosed guys – no one spoke, we’d all seen each other out and about but, in that room, that ‘death’ room, we were all silent and wallowing in our own grief.

It took me months to realise that I wasn’t going to die right away. I had so much trouble sleeping, working and even socialising. I thought it wasn’t fair, why am I going to die and all these people around me are so carefree, no troubles in the world and enjoying themselves so much. I couldn’t enjoy anything. I became bitter and angry. I started smoking weed, daily and this was the only thing that could help me forget what was going to happen to me one day.

Weeks turned into months, turned into years, and the longer I survived the more I realised that nothing was going to happen to me straight away. After 12 months I started to live my life again, started to enjoy doing things and not expecting death at any minute. 

Fast forward to 1999, I was still HIV positive, on no treatment with good T cells and low viral load. I almost forgot about living with HIV. I was asked to join a peer support program at the Melbourne Positive Living Centre. I resisted at first, I didn’t want to be reminded that I was sick and could still die from it one day. However, I went along to that first peer Support group and it changed me. Here were other guys who had all gone through the same experience as me. Some were long termers like me but many were newly diagnosed. I felt good about myself for the first time in years, and I was overwhelmed by the feelings of support and encouragement I received from other poz guys in the group. Plus, my story helped many newbies come to understand that it’s not all useless and doomsday these days and we can still manage to live a relatively normal life. 

In 2004, I stared anti-viral meds and have been perfectly healthy since then. I consider myself lucky, many friends died back in the darks times of the late 1980’s but nowadays there is a much more optimistic feel, it’s not the end of the world. Sure, it’s still an adjustment but there is so much support and care available now that it really helps the newly diagnosed avoid the feelings of isolation and utter fear that was the 1980’s. I always used to wish that I could just grow old like everyone else and not have to worry about AIDS. Well, with good healthcare, meds and support, I no longer worry about AIDS, just getting older —LOL! I have control of my life again and have done some amazing things in my life since then such as, jumped out of an airplane and saw the Berlin Wall before it was dismantled.

Being HIV hasn’t stopped me having relationships either. Once I got to know a guy well enough, I would tell him that I was HIV. By this stage I knew them pretty well and felt trust between us and in all cases, they were accepting and wanted to continue our relationship. One for 12 years (OMG, a lifetime in the gay world!) and another for 5 years, both with HIV negative guys who accepted and understood my condition. HIV was never an issue between us.

In 2012, I made a life changing decision. I’d always remembered how I used to think I was going to die any day, I wanted to continue to enjoy my life, not just live it. I made some changes to my life that would only snowball a few years later. 

I sold my business of 30 years and bought a caravan and travelled around Australia for 2 years just with my dogs, working in different cities for up to a month at a time. How awesome was this! I could go anywhere in my country and receive the same good health care, access to my medications etc. It was the beginning of even more changes ahead.

I then lived for 2 years in subtropical North Queensland next to a beach with the Great Barrier Reef at my doorstep. Met a guy from Brazil, a lot younger than me but hey, what the heck! We lived together for 2 years and then moved to Brazil where we lived for 18 months. No problem with health care there, I was able to access medications for free as a resident of Brazil. Next came Italy for two and a half years and now finally, I’m in Malmö which brought me to contact the Positiva Gruppen Syd to find out about any support groups here that I can access or maybe even help out with in the future. 

Of course, we have new challenges around today. Living through the pandemic reminds me a little of living with HIV in the beginning, although I don’t think the stigma of COVID really compares to the stigma of AIDS – AIDS was always the worst! Now we are suddenly being careful not to shake hands with people or even to meet them at all let alone kiss them…or more. I think COVID, however, has an end in sight, perhaps next year, a vaccine that may allow us to return to our normal ways whereas Aids medications took some time to develop and I remember thinking back in the 1980’s, “What? 10 years before we have a cure? I’ll be dead by then!” Now, of course, we have some outstanding treatments that can keep us alive indefinitely.

I now control my HIV, it no longer controls me.