On Wednesday November 2nd Positiva Gruppen Syd organized an online webinar with the aim to get inspired by the way peer support is organized in different countries. The webinar had the title ‘To understand and increase wellness and quality of life for PLHIV – Peer support, community initiatives and new tools’. With guest speakers from Norway, Sweden and Australia it was a very interesting morning of which we would like to share a summary with you.
Firstly, we are introduced to the Australian examples of peer support shared by Brent Allan, a specialist in global community engagement practices and also a goat farmer(!). Brent talked about two periods within peer support history. The first period in the 1980s and 1990s, focused on practical forms of support and was delivered through community agencies. In this first phase peer support was seen as ‘’nice’’, but not ‘’necessary’’. The second period started after 2000 and is more focused towards self management and tailored to individual needs.
One of the developments within the Australian type of peer support is the so-called peer navigation. Peer navigators are people living with HIV who are equipped to talk about how to live successfully with HIV and are stationed at the infection disease clinics. Whereby they function as a complement to existing medical professionals and were introduced to fill the gap at the clinics (how could the medicals understand the minor social difficulties that one faces living with HIV?).
The difference with peer support is that peer navigators are focused on navigation, access and connection with health care. Peer navigation is focused on the lived experiences, with five main topics central: health system navigation, stigma resilience, disclosure mastery, positive health outcome and ART adherence.
It is not about surviving, but about thriving!
Another topic that Brent talked about was PozQol, an instrument to measure quality of life (Qol) of people living with HIV. Within the quality of life and well being research there is an extensive amount of literature, but there has not been a specific focus yet on quality of life for people living with HIV. Therefore the instrument PozQol, in the form of a survey, was designed in Australia. The validated scale has since its introduction been introduced worldwide.
The survey consists of 13 questions that focus around four central themes: psychological domain, social domain, health concerns and functional domain. Experience learns that the functional domain is the lowest for newly diagnosed people.
In Australia people living with HIV go through the PozQol survey every four months and this process is overseen by the clinic. Once it is time to do the survey the clinic sends out a text message to the patient. The PozQol results give a broader view on the well being of the patient, because it is not just focusing on medical numbers such as the CD4 level. Holistic views are important, because quality of life is not about surviving, but about thriving!
The PozQol results gain evidence about the importance of peer support and can bring peer support to the next step: from ‘’necessary’’ to ‘’essential’’.
The user-driven clinic
The presentation was followed by Kim Fangen and Anita Øgård-Repål providing their Norwegian experiences. Kim is a Patient representative and Project manager at the Southern Hospital of Norway. Anita is Assistant professor, Department of Health and Nursing Science at the University of Agder. Their presentation focused on the user-driven clinic at the Southern Hospital of Norway and gave us an insight to the Norwegian situation. The presentation started by how Kim asked a group of patients ‘What is it that you need, how do you want us to run the clinic?’. The discussions led to a rapport of which one of the given recommendations was to install peer support within the clinic.
The start of a new PHD position
The hospital decided to follow the recommendations and install peer support within the clinic. They saw this installment as an opportunity to simultaneously start a research project. A PHD project was created for Anita and she researched the experiences of peer support in outpatient clinics from the perspective of service users, peer supporters and the healthcare professionals
Interesting findings from the research
The findings of Anita showed the essentiality of peer support: during the peer meetings there is a sense of mutual belonging and reciprocal support. It felt like coming home when one could meet a peer. There are multiple findings that show why having peer support at the outpatient clinic is beneficial.
Within the Norwegian context you can see that NGOs are not all over the country. It means that the OPC is an accessible place to everyone and moreover it is perceived as a neutral place with high confidentiality. Having peer supporters at the OPC ensures the quality of support the clinic can provide. Especially for newly diagnosed people it is a quick win, because this group needs the support immediately. Furthermore, it led to the medical staff having a better understanding of what it is like to live with HIV, because having peer supporters at the clinic means an exchange of knowledge and a dialogue to frame understandings.
Activism and peer support
The webinar was concluded with a presentation by Positiva Gruppen Syd about peer support in Skåne. Peer support is currently not a part of the healthcare system, however Positiva Gruppen Syd is convinced that having peer support integrated within healthcare is essential to improve well being among PLHIV. Our organization supported a motion from one of the political parties for systematic peer support within the healthcare system.
However, this was rejected, but Positiva Gruppen Syd is not giving up and looking for ways to improve the well being of PLHIV in (southern) Sweden.
The peer support webinar provided new insights and it was an inspiring morning. New connections have been initiated and Sweden and Norway are already thinking about how to make use of the PozQol in their respective countries.
If you are interested to learn more we have some reading and videos for you:
We have for you a link to the articles from Anita’s PHD:
My mother is a district doctor and through her I probably got an early picture of the medical profession as an important and exciting profession. Then I was also attracted by the challenge of studying for a profession that is perceived as difficult and demanding. The fact that I later became an infectious disease doctor is largely due to my interest in global health. I had a break from medical studies for six months and then worked as a volunteer in South Africa with an HIV project in schools in KwaZulu-Natal. There I got to see and experience up close the incredible suffering that HIV/AIDS has caused an entire society.
What is most inspiring about your work?
That we can actually cure the vast majority of diseases we treat and where we cannot cure, such as HIV infection, we can offer a treatment that keeps the person healthy for life. The pursuit of more equal access to care even in poorer parts of the world is also something that gives me inspiration to continue in my profession.
What is most challenging in your work?
Right now, long-term covid is the most challenging thing to deal with. We meet many people with great suffering where we unfortunately do not have much to offer beyond the message that for the vast majority it actually gets significantly better over time.
What do you think is the biggest prejudice about HIV?
I think that the prejudices surrounding HIV are very different among different groups. Unfortunately, some still perceive HIV as a form of punishment for bad living. Then, unfortunately, there is still a great deal of ignorance about how HIV is transmitted and, above all, not transmitted.
Do you think a cure for HIV will be discovered in our lifetime?
With a time horizon of 20–30 years, I think it might be possible, but not within the next 10 years. Until then, we can be happy that we actually have access to incredibly effective medicines.
What advice do you give to a newly diagnosed patient with HIV?
That in the midst of all the sadness surrounding the announcement that the person is HIV positive after all, it is important and good to know once status so that we can immediately get started with treatment. Once the treatment works as it should, my hope is that you will be able to continue living just as before, with the difference that you take a tablet or two a day without any troublesome side effects.
Do you think there is any benefit in a newly diagnosed patient having the opportunity to meet another patient living with HIV?
For some people, it can be very valuable to meet another person in a similar situation, while others do not express such a need at all. We always offer conversational contact with one of our counselors who also make such an assessment and, if necessary, can refer the person on to organizations such as yours.
Do you see any challenges in aging with HIV?
The older you get, the risk of contracting other diseases increases, which can make HIV treatment a little difficult due to so-called drug interactions. This can mean that we are forced to change treatment with the risk of side effects, but usually it is fine to adjust the treatment.
If you had contracted HIV, what would have worried you then?
Since I work a lot abroad where access to healthcare is sometimes limited, I would probably be most worried about loosing my tablets when I’m travelling. I think I would have had that worry regardless of the chronic illness I would suffer from.
In this article, we meet Suz who was diagnosed with HIV in the early 2000s. In the interview, Suz shares about living with HIV, the challenges she faced and the way forward to living a full life with HIV.
Right now I am a happy girl of 41 years, living with my parter and two dogs. But Suz has not always been the happy person, there has been a lot of negativity around me. Everything was negative.
I can start by telling you about how I got HIV, which was through a rape that I reported to the police.
When you make a police report for rape, you go through a gynecological examination. Through that, they found out that I had HIV and I got a phone call from the gynecology clinic where they told me that I had to come in to submit more samples when they suspected that I had HIV.
For me, HIV was not something that existed in Sweden, it was something that existed abroad. It does not exist here, what is that? But I had to go the day after the call and take new blood samples. I think it took another two days after that and then I got a phone call – you have HIV. Everything went very fast.
How did you experience the time after you got HIV?
I was 20-21 and lived at home with my parents. I had been raped and they saw that I was not feeling well so they could not really figure out that I also had contracted a disease.
I Just felt god why, and I panicked. I Remember I went to my best friend’s house and told her I had HIV. Then I thought – why do I tell her this, HIV is contagious and I might infect others in every possible way and I know she hugged me and said – “You, we fix this”. And I only have a faint memory of her accompanying me to the doctor on the first visit, where I met a doctor, a counselor and the only thing I remember from that whole conversation was just that – when will I die?
When I came home and looked at my parents, I thought – How do I tell my parents that I have a fatal disease? But somehow I mustered the courage and told them this, and my parents just looked at me and replied – “What the hell are you saying?”
My brother, who is a little more educated, was still shocked, so he just took his keys, got in the car and drove off. And there I stood, and was pronounced dead by my father when he said – “You have one foot in the grave”. I do not remember much more what happened that night but I said at least they should see my doctor so that they get more information.
When we then met the doctor, I remember that my doctor told my parents, she will not die of HIV, there are so many tablets that she no longer gets AIDS. She is at greater risk of dying from cancer or other diseases. But somehow you do not trust it, you had been fed by TV, newspapers, mass media what HIV is.
I do not remember much of the first year, I lived in a slumber. What I can remember is that people were not allowed to touch me because of the rape. If my dad, brother or another man touched me, it disgusted me. When it comes to HIV, people were not allowed to touch my cutlery, my coffee mug, the toothbrush it was to be sprayed off, the toilet seat was also to be sprayed off. I smoked at that time so people were not allowed to touch my cigarette or get the last flare. When I was menstruating, the panties would be plasticized and the sanitary napkins thrown away separately. No one was allowed to touch me!
Where did these extra measures come from?
I was afraid of infecting others, I did not have the knowledge. I was almost paranoid. It was a relief when I moved away from home, I did not have to think about where my coffee mug was, I did not have to sterilize things.
But then I started researching, what is HIV and how does it really transmit. Then I began to realize that I had been exaggerating, people are allowed to drink from my coffee mug, people are allowed to smoke my cigarette. Then another behavior developed, that I could joke. Yes, of course, here you can have my cigarette, but then you also get HIV. It was my way of processing, I joked a lot.
How was the doctor and what was said between you during this time? Did you talk about this?
No, it was mostly how are you doing and this is what your values look like. At that time, you did not go for treatment immediately, you only got it when you were below 300-350. But that was pretty much the only things talked about..
Your friend, did you talk?
No, she could sometimes ask, have you been to your doctor? Yes, and everything is fine? Yes, I answered. Ok – Ok. She said you’re not the disease, you are Suz. Sure, she listened, but we continued to live our lives, but I still lived in some kind of continuous fear. My thoughts were elsewhere.
What was your life like during this time?
Before HIV, I went away, I partyed and went out and about to do stuff. My parents never knew where I was.
Now I found myself just sitting at home. I was afraid to meet new people, I became insecure in myself. I became passive. And people were asking me, where’s that playful Suz we used to know?
Yes, but I’m playful, I said! “But you’re just sitting at home, why dont you go out and do things?” No, it is boring, I thrive here. So I lived in my little bubble.
“It took almost ten years before I started dating”
Guys were not in the picture, I did not want to know anyone. I felt like, who can accept me? Felt I was not ready and it took almost ten years before I started dating. Then when I got into dating, I thought about questions about, how, when and where do I tell you that I have HIV? It’s like not just saying – “Hey, my name is Suz, I have HIV.” I have tried that and a lot of other methods. To tell early, to wait or not to tell at all. You can not decide what is right or wrong.
I know that I met a guy, and I fell head over heels for him! We had been dating for about two months, almost every weekend and I noticed that he also was fond of me. So when do you tell, has it already gone too far, or is it too early? But I decided one night to tell, because he suspected that “well you have been single for 10 years, and why is that”?
My response was that, “I just have not found the right one”. He did not really buy it…
I told him one night at his house and gave the true reason, it’s because I have HIV. He reacted by becoming stiff, looked at me, got up, went to the bathroom and stayed in there for half an hour.
Ah okay, I thought, he’s thinking in there. But out of nowhere he comes out, goes into the hall, takes my shoes, jacket, bag and meets me who is sitting on the sofa while he pushes up all my stuff in the chest, pulls me up from the sofa and throws out a lot of awful words. “Fucking whore, fucking hiv pussy, now you’ve infected me!” Excuse the words, but thats what I was being told.
And I replied with, “what infected you”? We have not even had sex and I just thought that, even if we had, we would have protected ourselves. I just replied, “where did you get it from”? “We have kissed,” he replied.
“But it does not transmit by kissing” I replied.
“I do not believe that,” he replied. And did not want to finish listening. Just opened the door and really threw me out. It was 1-2 at night and I just stood there thinking, “what the fuck” and was so sad. I sat in the car, drove home, put on my pajamas and lay down in bed but could not sleep. Lying there and just crying. Fucking idiot! How stupid are you? I was sad, crying and running across the street to my safety, my friend. She opened, saw me in tears and understood that it had not gone well. I fell asleep in her arms. It’s one of all my dates I’ve been on.
All these prejudices that people have about HIV have done something to me. I did not want to tear up those wounds again. There my brother comes into the picture, who supported me and said, all men are not idiots, you will find someone. And I said to my brother, “you do not know what it’s about, this is about HIV, would you have dared to be with someone who has HIV?”
I tried and tried, and got knocked down every time. But somewhere I felt that, I’ll succeed, I’m worth finding someone. I am worth finding someone who can love me for who I am despite my HIV. And already after a few dates, I just said hell, HIV, back off, this is my life.
Where did you find the energy and courage to continue?
You do not want to live by yourself. The driving force was in wanting a partner. I had HIV, and they are the ones who do not have the knowledge. If they had the knowledge I have, they would have understood that HIV is not that dangerous.
Then when I dated the guy I am with today, I can tell you that we dated for a long time and I understood that he had taken a liking to me. Then I felt really nervous because this was a guy I really wanted to share my life with. I even called my doctor in Kristianstad and consulted, how do I set it up to tell my guy about my HIV, in a nice way, without scaring him? May I say that I can not transmit sexually? Yes, my doctor said.
But I thought, it does not sound good either, how should I present it, how do I say it, what do I say, when do I say it. And then came another thought, can I be thrown out again? Do I want to risk going through that again? A lot went through me and my mind at that time.
I did it then in a slightly ugly way, I think it’s cowardly, but I felt that I went through so much and I can not bear to be thrown out of Malmö and drive to my little village. So I know we talked on the phone and I told him that when you have time, call me. No, but tell me now he said and continued to push on like that. Its make or break, I thought – Well, I have well-treated HIV, I said. What, he replied. I have well-treated HIV, I repeated and had to say it several times before he understood what I meant, and he did not hear well-treated, but only the word HIV. No, this will not work, he began and spun on. And I just thought, no, I do not want to hear this, I have heard everything already, so I just hung up and got pissed. What an incompetent idiot I started swearing.
“Do you want to continue and meet?” I asked.
Then an hour passed and he called again. I thought, what does he want now, I thought. But I answered and was he said “What does well-treated HIV mean?” Ooh, he wants to know more. Then I had to explain that I take tablets that prevent me from sexually transmitting the virus. “Oh shit, so you’re healthy?” He replied. “So, no, you can never get clinically disease free, but you can keep it in check so well that they do not find the virus,” I replied.
“Oh ok” he said. “Do you want to continue and meet and so on?” I asked.
“Well, just come on by then,” he said then.
Is he planning to abuse me or murder me or something? But I thought he seemed pretty ok anyway, so when we met again he had read up a bit. Then we talked about it and we continued dating, for a long time, before he decided it would be us. He himself had called the infection clinic in Malmö and the medical hotline 1177 and asked, taken steps to become more knowledgable. He received the same answer in all places, that as long as she takes care of her medication, you will never be infected. He told me that as long as you take care of it, I will trust you. So somewhere out there there is hope!
What would you say to someone who was new to HIV?
The question is how receptive someone is. I know how receptive I was in the beginning. I was not receptive at all. So it all depends on where they are. If someone is far down at the bottom, you can not just say whatever. For me it was “you do not know me, you do not know who I am or what I have been through”. So I believe you have to try to ask, how far have you come? Have you accepted? Do you understand? You have to start carefully. But then show that there is hope, of course the road can be long and you will face adversity. Then the question is, how do you handle your adversity. Do you lie down and cry or do you hop on the bike and ride on?
What do you think is important to overcome adversity?
Set small goals. I have had various small goals. The hardest part has probably been to love myself, to accept myself. Because you can not love someone else before you love yourself. So for me it was hard to accept that I have HIV. I will not say that I have adapted my life to HIV, but still do it in some way, at certain points. The mistake I made was that I paused a lot in my life, try to live anyway, not to pause too much. Find yourself and start loving yourself.
In Skåne, approximately 1,100 people receive treatment for HIV at one of the region’s four infection clinics. A fantastic medical development has made HIV a chronic disease that is relatively easily treated with one or a couple of tablets a day. From an epidemiological perspective, the treatment means that people with HIV do not risk passing on the virus, even if a condom is not used during sexual intercourse. Despite the medical development, stigma about HIV remains. The stigma means that many people living with HIV do not dare to talk openly about their HIV status and live in silence with their diagnosis. Stigma and silence contribute to ill health, isolation and unnecessary suffering.
To address this problem, the Social Democrats in Skåne wrote a motion which was taken up on 21 December 2021 in the Healthcare Committee in Region Skåne. The motion proposed the introduction of systematic peer support for people living with HIV in Region Skåne, which would concretely mean that infection clinics act as a contact point for peer support and thus actively contribute to people with HIV being able to support and help each other to better psychosocial health. Peer support for people living with HIV is a well-proven method and has been available for several years as an integral part of healthcare in, for example, the United Kingdom and Canada. In Skåne, systematized peer support has been successfully used in Adult Psychiatry for several years and has contributed to a more person-centered care. After the Healthcare Committee in Region Skåne asked and received the opinion of the infectious disease clinics in Region Skåne, the board unfortunately chose to answer the motion (technically not saying yay or nay). As southern Sweden’s largest patient association for people living with HIV, Positiva Gruppen Syd believes that the answer contains a number of shortcomings and that the committee’s conclusion is made on incorrect grounds.
Firstly , the Swedish Public Health Agency published a study in 2020 on young people living with HIV in Sweden. According to the report, only 39% are as open with their HIV status as they would like and an equal proportion report suicidal thoughts. The respondents express a need to meet others living with HIV as well as a need of support to be able to become more open with their HIV status. In relation to people living with hiv wanting to be more open, the report is consistent with earlier research. Being more open, learning more about your diagnosis and being able to talk and learn from others in the same situation are fundamental parts of peer support and part of good health and learning to live a better life with HIV.
In the answered motion from the Healthcare Committee in Region Skåne, the infectious disease clinics in Helsingborg and Malmö / Lund have replied what they think about introducing systematic peer support for people living with HIV.
The clinics view the initiative positively, however, management at Malmö / Lund clinics see “ no need to be more proactive than is currently the case . “
We are very concerned about the discrepancy that seems to exist between the Malmö / Lund clinics’ perception of the target group and the need that is documented in the Swedish Public Health Agency’s target group studies. The response from the clinics does not refer to any studies, data or results that support that the current way of working is adequate and leads to desirable results.
Secondly , the clinics further state that “many people infected with HIV want to keep it within the family or a close circle of relatives without involving outsiders.” and that this is the reason why few are interested in peer support.
The Swedish Public Health Agency’s report Living with HIV (2016) rightly states that 4 out of 5 people living with HIV are worried about telling others about their HIV. At the same time, a large proportion of people living with HIV lack support in their environment in relation to their HIV and almost half of the respondents would like to be more open with their status. The results also show that openness with ones HIV status correlates with a better quality of life, while not having told about one’s diagnosis has a negative effect on quality of life.
How is it that the clinic’s view differs from the national target group studies from the Swedish Public Health Agency? Does the clinic have the insight to see how their approach to openness and (lack of) support to be able to become more open affects their patients’ health and well-being?
Not working with peer support when the data is so clear and points to a need for people living with HIV to meet others in the same situation is very remarkable. We also note here that the clinics do not refer to any research in their answers.
Thirdly , the clinics further state in the answer that “peer support can be important for some HIV-positive people”. The fact that the clinic itself makes the decision on who could benefit is extremely problematic and contributes to unequal care. The purpose of systematized peer support is that support is informed about and offered throughout to everyone living with HIV, precisely to create equal access to support where the patient can make the choice of what type of support he or she needs. That decision should not be made by the patient through the clinic’s own filtering and arbitrary assessment.
Finally , in Chapter 4, Section 1 of the Swedish Communicable Diseases Act, it is explicitly stated that people who carry a contagious disease and are in need of psychosocial support must be offered this in order to be able to manage their disease. We do not believe that the clinic’s current way of working meets the needs of the target group. The clinic has a responsibility to provide the rights of people living with HIV in the Swedish Communicable Diseases Act and in the long run it is Region Skåne’s responsibility to ensure that it is also complied with.
As a patient association, we welcome if the clinics come up with their own initiatives, solutions or invite collaboration to jointly create a more person-centered and equal care. If, on the other hand, there is no will to change and improve methods and working methods, we deeply regret this. However, we believe that Region Skåne can do better. As an organization, we have high ambitions for both ourselves and the actors we collaborate with. What level of ambition does The Health Care Committee in Region Skåne have?
If there is no inherent will to change and improve, you as elected representatives and those responsible for our joint activities in health care need to either demand more of the activities or push through reforms that contribute to development. The motion that the committee answers but at the same time also de facto rejects unfortunately shows neither a high level of ambition nor the reform work required. Together with the lack of evidence in the answer, we can unfortunately state that the committee in its role as guarantor of a good development of care in Skåne has acted far below reasonable expectations for its name and area of responsibility.
The inhabitants of Skåne deserve health and medical care that is for everyone and develops over time. Systematized peer support for people living with HIV is a resource-efficient and well-proven method. An initiative that would propel Region Skåne forward, promote collaboration and contribute to person-centered care.
As we are now used to, CROI or Conference on Retroviruses and Opportunistic Infection took place in the shape of a virtual conference. However, as usual, the conference brought together several of the most reputable researchers in HIV. Here is a selection from some of the studies and news announced at the conference.
Reduced prevalence of HAND among people living with HIV
An Italian study by the National Institute for Infectious Disease in Rome conducted 2,383 neurocognitive tests in a group of 1,365 people with HIV to find out how common HAND was and how it evolved over time. HAND stands for HIV associated neurocognitive disorder and is a catch-all term for a number of impairments that concern, among other things, memory, cognitive functions, behavior and movement functions. Before the treatment of HIV was available, HAND was associated with AIDS, but as treatment for HIV became available in 1996 and medicines gradually improved, HAND has become less common, but has not yet completely disappeared among people living with hiv.
In the study, which was conducted between 2009 – 2020, Dr Ilaria Mastrorosa and colleagues studied not only HAND but also other factors such as socioeconomic status, type of treatment and CD4 levels to understand if these could explain the existence of HAND.
The results showed that the prevalence of HAND among all study participants decreased from 38% to 16% over a ten-year period. Older age and detected hepatitis C antibodies were associated with a higher risk of HAND. Longer education, higher CD4 counts and treatment with integrase inhibitors were linked to a reduced risk of HAND. Dr Mastrorosa says in a comment that an explanation for the lower prevalence of HAND can to some extent probably be explained by the fact that newer HIV medicines are more effective and have fewer side effects than their predecessors.
Comment:From a patient perspective, it may be helpful to discuss treatment with your physician, especially for those who have experienced HAND symptoms. Integrase inhibitors are a modern class of medicines that have been around for almost 15 years. The class has with time been developed further with several new, even better alternatives, such as Dolutegravir and Bictegravir. Integrase inhibitors are today also part of the standard treatment given to someone who starts HIV treatment.
Anal cancer is more common among people living with HIV, but screening and treatment reduce the risk
The study ANCHOR, or Anal Cancer HSIL Outcomes Research studied whether screening and treatment of high-grade intraepithelial disc epithelial lesions or HSIL could reduce the risk of anal cancer among people living with HIV. HSIL is a type of abnormal cell change caused by certain types of HPV virus, which can lead to anal cancer. The HPV virus itself is a very common virus that exists in about 200 types, a majority of all who have been sexually active have been infected with some type of HPV. An infection with the HPV virus is usually asymptomatic and heals on its own, but some people living with HIV may have difficulty healing the infection from HPV.
The study lasted between 2014 – 2021 and tested 10,723 people with HIV over the age of 35 for HSIL using a cell sample. 54% of men, 46% of women and 63% of transgender people had HSIL at the first screening. During the study, the participants with HSIL were divided into two groups, a group that received treatment immediately where HSIL was removed by laser treatment, ointment or, in more severe cases, surgery and a group where the symptoms were actively monitored without treatment.
Immediate treatment was shown to reduce the risk of developing anal cancer by 57% and the study was terminated prematurely to treat all participants instead of waiting and monitoring. The treatment of HSIL is quick, easy and few reported side effects or any problems from the treatment. Professor Joel Palefsky at the University of California in San Francisco comments that screening and treatment for HSIL should be part of the standard of care for people living with HIV over the age of 35.
Comment:The vaccination rate of HPV for girls has gradually improved in Sweden, when boys now also will receive the vaccine, it is a step in the right direction to reduce the risk of certain HPV-caused cancers in the future. For those who are 35 years and older, it may be a good idea to take a cell sample to detect and reduce the risk of HSIL developing into anal cancer.
Undetectable virus for more than 3.5 years with new experimental treatment
A person in Denmark has been able to maintain a virus level close to zero through a treatment of antibodies. The person was part of eClear, a study that through the method “kick-and-kill” investigated a number of different treatments that could potentially be part of curing HIV. The study recruited 59 participants who had recently contracted HIV in Denmark and the United Kingdom, the participants were then divided into four different groups where all received standard antiretroviral HIV treatment and a combination of various more experimental treatments. After 400 days, participants were asked if they wanted to take a 12-week monitored break with the antiretroviral HIV treatment and investigate whether the experimental treatment might have had any effect. 20 participants said yes and seven participants met the criteria for the entire 12-week break as their virus levels did not exceed 5,000 copies per ml or CD4 levels dropped below 350. Perhaps most remarkable is that one person has been under supervised break for more than 3.5 years, with very low virus levels of 0.2 copies per ml of blood. In a comment, Dr Ole Schmeltz Søgaard says that it is still early and that it can be described as possibly a case of functional cure or extreme post-viral control of HIV. The person will continue to be examined and followed up by a medical team.
Comment:Much has been written and continues to be written about potential HIV cures. Progress has been made in recent years and there are today several theories and test studies to develop a safe cure that can also be scaled up and be applied on a wider scale. The examples of documented cases where people have been cured of HIV have often occurred in people who have suffered from a disease other than HIV, such as cancer, and were in need of invasive, high-risk, medical interventions. In these cases it has been ethically defensible to try to cure HIV in connection with such treatment. The antibody treatment with so-called bNAb, broadly neutralizing antibodies is still in its infancy, but an advantage is that it is a treatment that seems to be applicable with relatively few side effects.
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
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.
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
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.
“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. “
“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 “
“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 “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. “
“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? “
“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.”
“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?
“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. “
“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.”
“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 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. “
“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. “
“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.”
“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. “
“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”
“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. “
“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. “
“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?”
“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. “
“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 ”
“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? “
“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?”
“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. “
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.
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.
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.
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.