The Peo Scholarship 2021 is awarded to Fatu Willadsen and Mats Stjernstedt

Positiva Gruppen i Malmö delar ut Syd Peo Stipendium 2021

Positiva Gruppen Syd awards the Peo Scholarship for the year 2021, an award in memory of Per-Olof Persson and his work with HIV, to Fatu Willadsen and Mats Stjernstedt.

“Through their decisions to be open, Mats and Fatu have shown both courage and forward thinking. Through their respective actions, they have made themselves and others with HIV heard and seen. We need role models who break new ground and dare to talk about HIV in order to reduce isolation, loneliness and the stigma that still accompanies living with HIV. We are proud to be able to award this scholarship to these two role models whom have worked excellently in the spirit of Peo. ” Says Conni Rooke, chairman of Positiva Gruppen Syd.

In 2021, Fatu announced that she was living with HIV on social media. Through her openness, people from all over the world have reached out to contact her, she has been diligent in collaborating and participating in various contexts, locally by lecturing in Malmö and internationally by participating in debates and programs on social media. Her work in educating other people living with HIV, and talking in society about what it is like to live with HIV, has opened the door for others to be more open.

In connection with World Pride 2021, Mats received a question from Sydsvenskan about what World Pride meant to him. In the video that was later published on Sydsvenskan, Mats talks about his HIV and his experience living with HIV. The exhibition by José Leonilson at Malmö Art Gallery and the panel discussion on HIV that Mats was an integral part in organizing, also made HIV visible to a wider audience.

Both Fatu and Mats live and work in Malmö. The award ceremony was carried out in connection with World Aids Day at Positiva Gruppen Syd’s premises and coincided with an evening of mingling, music quizzes and food.

The 2021 award marks the 25th anniversary of the Peo Scholarship, the scholarship was awarded 1996 for the first time. This year’s appointment is also the first time the scholarship has been awarded to two recipients. In 2020, the Peo Scholarship was awarded to Alexandra Arrhén, read about the award for that year and an interview with Alexandra here: https://www.pgsyd.se/alexandra-arrhen-tilldelas-peos-stipendium-2020/

What is the Peo 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 people living with hiv acting in the spirit of Peo. Read more about Peo and the scholarship here: https://www.pgsyd.se/en/peos-stipendium/ 

Portrait images for the article from: Private photo / Kunstkritikk.se

Member stories: “Surprisingly thanks to the infection, I felt a sense of belonging somewhere”

A story from one of our members

In Kordofan region, we have a popular saying: “two people lookalike do not live”, meaning that if two members of the family share features and resemblances, one of them must die and one of them would rather live. 

When I was seven years old, fate decided that my father died. As I accompanied my mother as a youngster, to any place or someone came across us on the street, the conversation would start with a question to my mother: “Is this your son?” 

As my mother answered yes, that person spoke out and passed judgment that I must have killed my father. 

As a child I, neither did I understand the old saying nor was I comprehending why anyone would say I killed my father. This created an indescribable state of terror and guilt in me, and I would start to cry and scream: “I swear to God, I didn’t kill him.”

As I grew older I eventually learned what the saying meant and could read these situations for what they were. From being instilled with fear and guilt of being a murderer, my thoughts transformed and a belief set in that I will likely die from cancer like my father. 

Fast forward, seminars and awareness campaigns were held in schools to raise awareness about the risks of having sex outside the framework determined by society and in the way legislated by religion. They were nothing but a huge support to the concept that STDs and particularly HIV are wrath and divine punishment for people who do not abide by the teachings and limits of religion, and of course the greatest amount of slander and blame belonged to members of LGBTQ+ community who are collectively reduced to the description of “Lawaita” which means Faggots.

Since I am a luty(faggot) and I was very certain and convinced of my identity, the virus constituted an obsession for me. This was spurred on by people being televised in a very bad condition diagnosed with cancer and other diseases, at the time no treatment was available.

Some may ask, why does he call himself a faggot, while this word carries a lot of slander, condemnation and humiliation? My answer is simply that societies always tend to attach some value to certain vocabulary in order to subjugate some members of society or belittle them. Throughout history, many of the vocabularies with a negative meaning, the original meaning was mutated and dressed up with a positive meaning as a way to support certain purposes and establish specific concepts. This serves not only a linguistic function, where the recipient feels insulted and the speaker gains pleasure, but also gives the latter power and superiority. In one way or another, we are the ones who define the vocabularies and their strength and impact, whether it is negative or positive. Therefore, I do not allow or give a person the power and the privilege of insulting me by using words or any other means.

Going back to the sequence of events and my obsession of the virus, I always made sure to take safety measures before having sex, unlike some people who abstain from sex. Despite my panic about sex triggered by rape at a young age, sex to me is a way of deep communication between two souls rather than just physical contact. But it seems that sometimes one is not able to escape from his fears that have settled deep within him, as if he becomes like a magnet that pulls them in his direction whenever he makes an effort to avoid them.

When the doctor told me to wait for him in the office to tell me about the test result, I read the result in his eyes before he even declared it. To be frank I expected it, since of all people in the entire universe I believe I’m the one who is most obsessed with looking for symptoms of cancer and HIV.

I received the news coldly with internal denial. It’s part of my nature when facing crises and adversity. I can be colder than Antarctica, but may nonetheless melt later.

I remember I called my mother the next day. I needed energy, and she was always like a dynamo that generates energy in me and pushes me forward. However, I certainly could not tell her about my infection. 

As soon as she picked up, the ice melted and I started crying hysterically. She was very worried and asked me: “What’s the matter darling? boy, do not make me more worried and sad, I feel so much heaviness since you left to Egypt”

I answered her: “I am tired and fed up with life, why does life not want to have mercy on me and hit me with all its might, why am I the one who always receives harm while I never hurt anyone? Why did I had to leave my country and those who I love? I am ok, don’t worry I just miss you a lot.”

The effect of HIV on me has not been as severe as other traumatizing experiences that I have lived through thus far. Surprisingly thanks to the infection, I felt a sense of belonging somewhere.

I came to Sweden and met the doctor, and a social worker who referred me to the Positiva Gruppen Syd organization. At that moment, I felt a sense of belonging. Although I have been to different places in Sweden but never had the feeling I get, every time I walk into Positiva Gruppen Syd´s office. I feel at home and among my family. I lived 28 years, deprived of this feeling. And believe me, I cannot put the beauty and depth of this feeling in words because it exceeds the limit of description. Possibly because I experience it for the first time.

This concept may be a little strange, even for me, but I consider my HIV status as a bonus, since because of it, I can feel things that I have been missing for a long time. In any case, HIV (this is in my own interpretation, and of course everyone is free to live the experiences and interpret them individually) is not harder than living almost three decades struggling just for being different than the rest of the people around you.

العجيب في الامر انه بسبب الإصابة بالفيروس حسيت بالانتماء لمكان ما

A story from one of our members

في إقليم كردفان عندنا مقولة شائعة بتقول:” شبيهين ما بعيشوا” بمعنى انه اذا فردين في الأسرة بتشاركوا الملامح و الشبه لابد انه واحد فيهم ح يموت و واحد بس يفضل عايش، ثم شاءت الاقدار انه والدي يتوفى لما كنت في عمر السبعة سنين، فاللي حصل انه في كل مرة أمشي فيها مع امي لاي حتة أو يصادفنا شخص في الشارع فعلى طول يبادر الحديث بسؤال امي :” ده ولدك” ولما امي تجاوب بنعم ، فيطلق السامع حكم بانه انا اللي قتلت ابوي.كطفل كنت غير مستوعب لمعنى العبارة و الشي ده كان بيخلق جواي حالة لا توصف من الرعب و الإحساس بالذنب، فكنت اشرع في البكاء و اصرخ:” والله العظيم انا ما قتلته”

مر الزمن و كبرت في العمر و ادركت دافع الحكم بأني قاتل و على ماذا يستند، فتحولت العبارة من شي يبعث الخوف و الإحساس بالذنب إلى اعتقاد بانه انا ح اموت بالسرطان زي ابوي.ثم لاحقا كانت تقام ندوات في المدارس و حملات توعية بمخاطر ممارسة الجنس خارج الإطار اللي بيحدده المجتمع و بالطريقة اللي يشرعها الدين ، فبطبيعة الحال حملات التوعية كانت منطلقة و مدعومة بالمبادئ الدينية بخصوص الجنس و بتشوف انه فيروس نقص المناعة البشرية و غيره من الامراض المنقولة جنسيا ما هم إلا غضب و عقوبة إلهية للأشخاص اللي ما بيلتزموا بتعاليم و حدود الدين، و بطبيعة الحال كان القدر الأكبر من الذم و اللوم من نصيب أفراد مجتمعة الميم اللي بيتم اختزالهم جمعيا تحت وصف “لوايطة”.وبما اني لوطي و كنت متاكد و مقتنع جدا بهويتي، شكل الموضوع هاجس بالنسبة لي خصوصا انه النتيجة النهائية للفيروس قد تؤدي إلى الإصابة بالسرطان بحسب ما كان يروج في الاعلام و في وقتها ما كانت الأدوية بفعالية الأدوية المتوفرة حاليا. و بما انه اعتقاد الإصابة بالسرطان كان متملك دواخلي مسبقا فلكم أن تتخيلوا وقع الاخبار دي على نفسي

قد يتساءل البعض، ليه ده بيقول على نفسه لوطي و الكلمة دي بتحمل كتير من الذم ، الإدانة و التحقير، جوابي بكل بساطة انه المجتمعات دائما بتميل لإكساب بعض المفردات زخم معين عشان تخضع بعض أفراد المجتمع أو تقلل من شأنهم، و على مر التاريخ في كتير من المفردات اللي كان عندها معنى سلبي تحور المعنى و تم إلباسها شي من المعنى الإيجابي و العكس صحيح لدعم اغراض معينة و تثبيت مفاهيم محددة، بالاضافة إلى ملاحظتي لحقيقة احساس المتلقي بالإهانة يكسب القائل لذة و احساس بالقوة و الفوقية، فانا بكل بساطة بحرمه من احساس اللذة و الفوقية لما يكتشف أنه كلامه ما بأثر فيني زي ما كان هو متوقع. و بشكل أو بآخر نحن اللي بندي المفردات قوتها و تأثيرها سواء كان سلبي او ايجابي و انا ما بسمح انه ادي شخص قوة و افضلية بسبب مفردات أو غيرها من الأسباب

بالرجوع لتسلسل الاحداث، عشان اقلل من تأثير الهاجس ده حرصت دائما على أخذ تدابير السلامة قبل ممارسة الجنس، على عكس بعض الناس اللي بيمتنعوا عن الجنس ، لأن الجنس بالنسبة لي طريقة لتواصل عميق بين روحين اكتر من انه تواصل جسدي ، بالرغم من هلعي من الجنس بسبب الاغتصاب في عمر صغير.و لكن على ما يبدو أنه في بعض الأحيان الواحد ما بيقدر ينجح في النجاة من مخاوفه اللي استقرت في اعماقه و كأنه بيصبح زي مغنطيس بيقوم بجذبها في اتجاهه كلما بذل جهد في انه يتفاداها.لما الدكتور قال لي استناني في المكتب و ح اجي اوريك بنتيجة الفحص في تلك اللحظة قريت النتيجة في عيونه قبل ما يصرح بيها، و بكل صراحة أنا كنت متوقع و انا مؤمن انه انا اكتر انسان في الوجود على الاطلاق بيبحث بشكل دائم عن اعراض السرطان و الإصابة بفيروس نقص المناعة البشرية المكتسب.استقبلت الخبر بكل برود مع إنكار داخلي، و جزء من طبعي أنه أثناء الأزمات و الشدائد بكون أبرد من القطب المتجمد و ممكن اذوب فيما بعد

اذكر انه في اليوم التالي اتصلت بامي لاني كنت محتاج طاقة و هي دائما كانت بمثابة دينامو بيولد طاقة جواي و يدفعني للامام و لكن اكيد ما بقدر و لا ح اقدر اوريها باصابتي، و بمجرد ما رفعت السماعة ذاب الجليد و شرعت في بدء داومة بكاء هستيري، كانت قلقة جدا و بتسال فيني :”مالك يا ولد ، حاصل عليك شنو؟”. جاوبتها : ” انه انا تعبان من الحياة، ليه الحياة ما عايزة ترحمني و بتضرب فيني بكل قوتها، ليه انا اللي دائما بتلقى الأذى في حين أنه ما حصل اذيت انسان “. انا اؤمن انه الإصابة بفيروس نقص المناعة البشرية المكتسب تأثيره ما كان اقسى و أمر من التجارب اللي عشتها من عمر الخمسة سنين لحد الآن ، و الاعجب في الموضوع انه بفضل الإصابة انا حسيت بالانتماء لمكان . لما جيت السويد و قابلت الطبيب و من ثم بعدها قابلت المرشدة الاجتماعية و دلتني على منظمةPOSITIVA GRUPPEN SYDفي لحظتها حسيت بالانتماء و بالرغم من اني مشيت أماكن مختلفة في السويد لحد الان ، إلا أنه في كل مرة أمشي فيها للمنظمةبحس اني في بيتي و بين اسرتي و الاحساس ده عشت 28 سنة محروم منه ، و صدقوني ما بقدر اصيغ جمال و عمق الاحساس ده في كلمات لانه فايت حد الوصف او احتمال لاني بختبره للمرة الأولى.يمكن المفهوم ده يكون غريب شوية ، حتى بالنسبة لي و لكن أنا بعتبر اصابتي بفيروس نقص المناعة البشرية المكتسب منحة، لانه بسببه قدرت اجرب احساس حاجات افتقدتها مدة طويلة من الزمن. و على كل حال فيروس نقص المناعة البشرية المكتسب (ده في تفسيري الخاص و اكيد كل شخص ليه مطلق الحرية في عيش التجارب و تفسيرها بشكل فردي).ما ابشع من حوادث الاعتداء الجنسي اللي مريت بيها ، و لا حتى ابشع من التنمر و العزلة و عدم الاحساس بالانتماء بس لاني كنت مختلف 

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