You can make a difference, become a board member!

For the 2024 annual meeting (held on February 22, 6pm at our office), we also have a special request from the Election Committee, Sergio.  

The Nomination Committee: 

‘Our organization has grown in recent years and is in an exciting development phase with many projects and a great local commitment. Positiva Gruppen Syd has an active board and the nomination committee is now looking for you to join with ideas, time and commitment to the practical work! 

We are looking for you who:

  • Shares our values.
  • Want to drive the association forward and take responsibility.
  • Want to organize and participate in member activities.
  • Are willing and able to spend at least five hours a month on board work and member activities.

It is an advantage if you:

  • Have experience of sitting on a board.
  • Have experience or interest in political influence. 
  • Have experience in finance and accounting.
  • Have experience of employer responsibilities.
  • Have experience with HIV-related stigma.

We are looking for people who are interested in the following positions:

  • Vice-Chair (or a shared chair).
  • Alternate board members 
  • Member of the Nomination Committee

If you are the one we are looking for, please send your interest by Wednesday, February 14th, 2024, to the PG Syd Nomination Committee: sergioscro.se@gmail.com’.

PEOs Scholarship 2023 awarded to Vìctor Manuel Infante

Positiva Gruppen Syd awards the 2023 Peo Scholarship, an honour in memory of Olof Persson and his work with HIV, to Vìctor Manuel Infante.

“With his commitment and openness in relation to his status, Vìctor has contributed to reducing the stigma surrounding HIV. His courage has empowered others living with HIV and Victor contributes by being a positive role model. All in all, Victor has acted in the true spirit of Peo and thus receives this year’s award,” says Set Rooke, Chair of the Positiva Gruppen Syd.

Victor has been open about his diagnosis from the beginning. Soon after he was diagnosed, he started taking action to improve the lives of people living with HIV. He initiated support for people living with HIV and went to the media in Cuba. Recently he has been interviewed about his HIV journey. The article can be read on the Positiva Gruppen Syds website: https://www.pgsyd.se/en/victor-never-give-up-your-dreams/

The award ceremony took place on World Aids Day at Positiva Gruppen Syd’s premises and coincided with an evening of mingling, quiz and food.

What is the Peo Scholarship? – Per-Olof “Peo” Persson was chairman of Positiva Gruppen Syd in 1989-1993 and a pioneer in raising awareness of HIV and AIDS both in southern Sweden and nationally, including as vice-chairman of RFHP (Riksförbundet för hiv-positiva, now Hiv-Sverige) in 1991-1993. Peo died in 1995 and since 1996 a memorial scholarship has been awarded in his name. Read more about Peo and the scholarship here: https://www.pgsyd.se/en/peos-stipend/ 

Portrait photo for the article from: private photo

Victor: ”Never give up your dreams!”

In this article, we meet Victor who was diagnosed with HIV in the early 90s in Cuba. In the interview, Victor shares about living with HIV, the challenges he faced and the way forward to living a full life with HIV.

1. Hi, there! Can you tell me, who are you?

Hi, my name is Victor, I am from Cuba, I am 61 years old and have been living with HIV since I was 29 years old. I currently live in Malmö, Sweden since 23 years ago.

2 You contracted HIV in Cuba, can you tell us what it was like to live with HIV there and then?

Getting a positive HIV diagnosis in 1992 in Cuba was a big challenge because it was difficult to find supplies such as food and medicine. At that time, you learnt about your diagnosis through the Public Health Agency. Being diagnosed meant compulsory admission to a sanatorium controlled by them controlled by them. Around this, there was no choice. The only alternative was to be placed in a prison called Nazaren, specifically for people living with HIV. When I was taken to the sanatorium, I was very scared. Because I had anxiety, I was also admitted to the sanatorium’s psychiatric ward, and was given injections of tranquillisers every eight hours for two weeks. The inmates of the Sanatorium were allowed to go out for a few hours once a week, but were always supervised by sanatorium staff who constantly followed us everywhere we went during our leave. They were also with us when we met the family and possible partners. When we came back, we had to give an account of our social and individual behaviour during our leave. In exchange for our freedom, they gave us enough food and free medicine at the sanatorium. No matter how complicated life in the sanatorium was, we tried to make our stay as pleasant as possible and we could feel free in our sexuality expression. There was solidarity between us the inmates. Those who had experience in cultural life, for example, created theatre performances, drag shows and had a writing workshop. The institution had a very high standard of living compared to the rest of the population. during those years in Cuba.  We were given good food and all the necessary hygiene items, which were scarce outside the sanatorium. We had air-conditioning, and colour TV at a time when Cuba had problems with with electricity. There was a huge housing shortage, but we had nice rooms with access to toilets and water.  This led to a marvellous phenomenon: some people made sure they were infected with HIV by injecting themselves with HIV by injecting themselves with infected blood to get a place with us. Especially young people who liked rock music (rockeros).  Shortly after my admission, I became a member of an HIV prevention group, which worked to inform the population about the disease and raise awareness of how it was transmitted. We visited, for example, workplaces, schools, and the university to increase the visibility of infected people, and prove that we were normal people despite the disease.  Two years later, the policy on the infected in Cuba had changed and we were gradually given more freedom. We were able to return to our normal lives through a process that took several steps as we were eventually declared “reliable” to stay, work and even live in the community. I took the took the chance and started working at the Institute of Infectious Diseases in Havana. Thanks to this, I had contact with Doctors Without Borders from the Netherlands. They offered courses and workshops, which increased my ability to work on prevention. I had the opportunity to cooperate with the Pedro Kouri Institute, internationally recognised for its longstanding work on tropical and infectious diseases. 

Victor in Cuba

3. When you moved to Sweden, what differences were there for you living in Sweden with HIV compared to Cuba?

Leaving Cuba is the most pleasant memory I have from that time of my life. I would get access to medicine and continue building a better life in Sweden. I did not initially intend to leave Cuba but was advised by my compatriots who had visited Sweden that it was a good country. I immigrated with a visa in 2000 and was granted a residence permit on the basis of connection as I had a relationship in Sweden. 

Victor and his former boyfriend Marcelo

4. You are featured in this article and are open about living with HIV. Have you any obstacles around your HIV?

Yes, I have always had support from my family and friends, including neighbours. I had decided to tell you, but in Cuba it was still practically impossible to hide it, because of the existing policy of the health authorities on AIDS in Cuba. 

5. Are there challenges for you in living with HIV today? 

Yes, it is a continuing challenge not only because of HIV but also because of how to dealing with other old and new health problems.  In terms of my health care contacts, it works well with the infectious disease clinic and the health centre, but I have faced great challenges in my contact with psychiatry as they have not taken my vital medication needs seriously. It has created chaos in my life that there is no continuity in terms of doctor contact in psychiatry. There is a lack of even the most basic understanding of our specific problems. 

6. What would you say to people who have been newly diagnosed with HIV? with HIV?

I would say to them, the same thing they said to me many years ago, that when you are diagnosed, it is important for us to be involved and empowered, which means that we have to learn and take an active role in the and take an active role in the decisions that are made, in all respects, whether they are medical or legal.

7: You are an active member of the Positive Group South. How did you become part of the organisation and what does the organisation mean to you? 

I knew about the existence of Positiva Gruppen before I came to Sweden through some members who visited Cuba in 1999. Then I got a good impression of their organization. As soon as I came to Sweden, I became a member of Positiva Gruppen Väst in Gothenburg and later Syd in Malmö. Marcelo, who was my partner during my first time in Sweden, was very active in PG West. This made me feel safe and inspired me.  PG Syd has been very important for me in terms of language, quality of life, social integration and medical treatments. I was also at the time an active member of Noak’s Ark. During my time in Cuba, I kept my home open as a social organization for other people living with HIV. We supported each other with things like medicine, cooking, celebrating holidays and anything else that was needed. Today, the programme would perhaps be compared to a type of peer-support but more private and close.

8. How do you see your future and growing older with HIV?

It depends on the day, sometimes very positive and sometimes not positive at all. I try not to think so much about getting sick and focus mostly on feeling healthy and maintaining good routines such as routines such as cooking, exercising and fostering good relationships. The power to focus and steer the day towards something good can sometimes feel exhausting and heavy.

9. What tips would you like to give to other people living with HIV to stay well?

I would tell them not to give up on their dreams. When I moved to Sweden, I had a dream of studying to be a childcare worker, but was prevented by a friend who said that the parents would have negative opinions about my sexual orientation. Today my interests are only hobbies around technology and I am an adult role model and mentor to the daughter of one of my best friends.

10. We often see that health professionals do not have enough knowledge about HIV. If health professionals were to read this interview, what would you say to them?

Don’t miss the opportunity to get feedback, both professionally and humanly, on the knowledge and experiences of people living with HIV. 

11. What are your hopes for the future and HIV? 

A vaccine would of course be very welcome, but with the medicines that are available today, the work continues in a positive direction for Positiva Gruppen Syd, Hiv-Sweden and RFSL Rådgivning and all other organizations. The dream is that everyone living with HIV will be declared healthy!

Victor in Malmö!

HIV and openness: a panel discussion with politicians and civil society at Rosengård Library

On Monday October 23rd an impressive group of politicians and civil society gathered for a panel discussion on HIV and openness at the Rosengård Library. The event was an important meeting point to highlight the challenges and progress in the field of HIV. 

The panel consisted of regional politicians (Carina Svensson), municipal politicians (Sedat Arif, Isabel Enström) and representatives from non-profit organizations – Noaks Ark Mosaik (Povi Foly Lawson) and Positiva Gruppen Syd (Anton Yashin), who shared their perspectives and experiences. The moderator of the evening was Joost Nussy from Positiva Gruppen Syd. 

The event started with a contextualization of the topic. Today, HIV is a disease that is more about the social than the medical aspect and in addition, HIV as a disease is more stigmatized than other diseases, which means that many people living with HIV do not dare to talk openly about their HIV status and live in silence with their diagnosis. The Swedish Public Health Agency has concluded that less than half (39%) of young people with HIV are not as open about their HIV status as they would like to be. This should be problematized because the degree of openness about one’s diagnosis is linked to a better quality of life. 

After the contextualization, we listened to a story where the social aspect of living with HIV was highlighted: it talked about fear of health care, of being treated differently and about an inner journey of self-esteem, shame and how it is connected to how open a person is with their diagnosis. The story was not only dark, but also about personal progress. 

The panel discussion revolved around three main themes: 

  • Challenges of HIV and openness: The panel emphasized that stigma and discrimination still affect people living with HIV. Panelists discussed intersectional stigma and how some people find it easier to be open than others. People’s privileges were raised and the fact that we have different conditions that lead to inequalities that affect the individual. Lack of language skills is an example of such a barrier. 
  • HIV and quality of life: The panel discussed the undetectable equals untransmittable (U=U) message. The fact that today HIV is not transmitted is currently not clear to all health care workers. It is important that people understand how HIV is spread and not spread, and that they have access to accurate information on how to prevent and treat HIV. Education can help break down myths and misconceptions about HIV. This is crucial to reduce the spread of HIV and improve the quality of life of those living with the virus.

  • The importance of systematized peer support: We talked about the motion from 2021 for systematized peer support on a regional level which was answered. Currently, there is no systematized peer support, i.e. peer support is not offered at the infection clinics in the Skåne region. All people living with HIV have regular contact with an infection clinic and it is therefore important that they are offered peer support through them. If peer support is offered at the clinics, everyone can be offered equal access to peer support that has a positive effect on the individual. The UK-based methodology, which Positiva Gruppen Syd has adapted to Swedish society, is an effective tool that ensures people’s well-being, prevents the risk of possible sequelae and can thus relieve the burden on the health care system in the long term.  
 
Carina Svensson (Regional Councillor and Second Vice-Chair of the Health and Medical Committee, Region Skåne): “HIV is not a fatal disease today and we all have to deal with that. HIV-positive people should and must be included in our society. This is best done with information and knowledge, something we can all contribute.”

The panel came to several important conclusions, including the need to continue breaking down barriers and the stigma surrounding HIV, but the question remains of how we can work together to move forward in a supportive way. Therefore, we will continue the dialog on how to fight together for a good life for people living with HIV!

The Secrets of FaR (PPA)? For your Health!

FaR stands for Prescribed Physical Activity and is a working method that was developed in the 21st century to promote health and prevent disease through increased physical activity.

So what Does FaR mean?

A person-centered approach forms the basis of the FaR method, which begins with an initial health talk followed by a written prescription where the activity becomes part of your treatment and is adapted to your conditions and wishes. Follow-up is an important part to support continuity but also to evaluate the physical activity. Individuals who need increased physical activity to prevent or treat a disease can receive FaR. You can get FaR from licensed personnel in the health care sector, for example physiotherapists, doctors, nurses, psychologists or occupational therapists. FaR is not currently included in the high-cost protection, which is unfortunate as it was presented in the publication “Folkhälsan i Sverige – Annual Report 2023 ( Folkhälsomyndigheten, 2023)” that all health outcomes affect people with a lower socio-economic position more than others, an issue that was problematized and raised during the training session about the method held by RF-SISU and employees at Region Skåne on 16/3. 

An active and healthy lifestyle is important for everyone, especially in relation to HIV as there are health benefits with adapted exercise to prevent possible health challenges. Regular exercise training can, for example, lower blood pressure, mindfulness can contribute to increased mental well-being and gentle weight training is often used as a treatment for various types of chronic pain. We lift FaR so you can lift the method with your healthcare provider. As a result of the pandemic, the prescriptions of FaR were reduced in most regions and the knowledge of how the method is used may differ between healthcare providers. Do you want to know more about FaR? Contact your healthcare provider. We also want to remind you that PG Syd offers free membership and training at Friskis & Svettis as well as training for all members of PG Syd. Contact us and we will arrange for you to become a member of Friskis & Svettis and can train free of charge!

Om FaR i Sverige – FoHM Om FaR Region Skåne  RF-SISU RF-SISU Skåne is, on behalf of Region Skåne, responsible for training and recruiting sports associations and other actors to the database of activities for individuals who have received a FaR.    

FYSS An evidence-based handbook that describes how physical activity can be used to prevent and treat a variety of disease states. FYSS 2021 is primarily aimed at healthcare as decision support for counseling and treatment with physical activity, for example FaR.

Top three from CROI2023: BMI affects weight loss, TAF and cobicistat linked to physical depression symptoms and stem cell surgery offers hope for life without HIV

Konferens om hiv och behandling

The Conference on Retroviruses and Opportunistic Infections (CROI 2023) took place in Seattle, USA last month. Here are our top three from the five-day conference:

People with a higher BMI lose more weight when changing treatment

We reported from the AIDS2020 conference how antiretroviral treatment when switching from TDF (tenofovir disoproxil fumarate) to TAF (tenofovir alafenamide) led to weight gain. During CROI2023, two new studies were presented that specifically aimed to increase understanding the possible connection between weight and TAF.

In the Netherlands, almost all people receiving HIV treatment are followed in a study called ‘ATHENA’. In an effort to find out how changing HIV treatment affects weight in people living with HIV, researchers looked more closely at TAF in combination with the class of integrase inhibitors.

The study identified 69 people who were on treatment with an integrase inhibitor and TAF, and who changed treatment. The group had increased in weight by 3.2 – 5.6 kilos in the last two years, and after they changed treatment lost 1.3 – 2.6 kilos. The biggest effect on weight was integrase inhibitors, those who were on treatment with an integrase inhibitor and switched to another class of medicine lost more weight than those who only switched from TAF to another preparation. But even just switching from TAF to another medication resulted in an average weight loss of 1.3 kilos. Noteworthy was that those with a BMI over 30 experienced far more weight loss compared to others.

Similar results emerged in the Belgian study  ‘Rumba’. People with a BMI over 30 who switched from a combination of either dolutegravir/lamivudine and abacavir (Triumeq)  or bictegravir/TAF/emtricitabine (Biktarvy) to the two-drug combination dolutegravir/lamivudine (Dovato) lost an average of 1 kilogram. At the same time, people who remained on a treatment of bictegravir/TAF/emtricitabine gained an average of 1.4 kilograms.

New treatments have gotten better and side effects in the form of, for example, fat accumulation around the neck and loss of fat under the soles of the feet are very rare today, but we already knew that HIV medications can affect weight and metabolism. The differences in weight gain and weight loss among different treatments should still be considered relatively small, even though differences exist. The kilos that can possibly be affected by changing treatment should be compared with other methods of managing weight, e.g. Exercise or diet. But given that today’s treatment is lifelong, even minor adjustments can make a difference in the long term, perhaps when you are already about to change treatment, also think about how the treatment affects weight.

More common with physical depression symptoms in women taking TAF and Cobicistat

The term physical depression symptoms include, among other things, sleep disturbances, changes in appetite, weight gain or loss, pain or sexual dysfunction. In a study from the United States, researchers from the Women’s Interagency HIV Study show that certain combinations of medication can contribute to physical depression symptoms in women living with HIV.

In the study, researchers followed 1,538 women who visited a clinic at least twice a year since 2014 and provided answers about their mental health. The average age was 49 years and just over two-thirds were African-American women. 27% of the women in the study had a viral load above 50 copies/ml.

After studying the women’s responses about their own well-being, the researchers were able to divide the participants into three roughly equal groups; low, high or no depression. The following three treatments were found to be associated with physical depression symptoms among women with high depression:

  • TAF, emtricitabine, darunavir and cobicistat (Symtuza)
  • TAF, emtricitabine, elvitegravir and cobicistat (Genvoya)
  • TAF, emtricitabine, elvitegravir, darunavir and cobicistat.

Two other treatments among the same group of women at the same time showed no connection to physical symptoms of depression:

  • TDF, emtricitabine and efavirenz (Atripla)
  • TDF, emtricitabine and rilpivirine (Eviplera, Complera).

Among participants with low or no depression, type of treatment did not play a role in relation to physical depression symptoms. There was also nothing to show that a certain type of treatment affected mental depression symptoms.

Interesting study looking at physical depression symptoms in women living with HIV. TAF has been on the market for almost 10 years and does not have a reputation for affecting mental or physical well-being more than other medications. The main rationale when TAF was approved was to switch from the older TDF to TAF in order to decrease risk of osteoporosis. Cobicistat is a booster (increases the body’s absorption of medicine) first used in 2012. Previous studies have shown that Cobicistat also increases the absorption of TAF. Admittedly, women with already high depression had other factors that increased the vulnerability to physical depression symptoms, but for those who have a treatment consisting of TAF and Cobicistat and experience physical symptoms of depression, it may be worthwhile to pay some extra attention to the symptoms of physical depression. Finally, it is worth noting that physical depression symptoms and what we would call depression or low mood are not the same thing.

Stem cell surgery offers hope for life without HIV 

A 53-year-old man in Dusseldorf, Germany now known as ‘The Dusseldorf patient’ was diagnosed in 2011 with HIV and the life-threatening cancer acute myeloid leukemia. Two years later, the man began a stem cell transplant with the intention of curing both his leukemia and HIV. The operation meant that the man underwent both chemotherapy and so-called “graft-versus-host disease”, where the body attacks itself after transplanting new organs or cells.

Today the man named Marc, has no detectable HIV and doctors consider him cured of HIV. Marc is thus one of the five unique people in the world who are considered cured of HIV with the help of a stem cell operation.

The other four people are Timothy Ray Brown (Berlin patient) who lived 13 years without HIV, Adam Castillejo (London patient) who has lived 5 years since being cured of HIV, a middle-aged woman in the USA (New York patient) with 3 years without HIV and the 63-year-old City of Hope patient who has been HIV-free for 2 years.

Comment: It is always nice to have positive news that shows that things are moving on the cure front. Knowledge about HIV and how the virus “hides” in the body increases every year. Unfortunately, the interventions where a person has been cured are often harsh and unpredictable, with other lifelong complications as a consequence. Compared to today’s treatment, the risks and cost are far too high to make this type of intervention something universal. However, we say congratulations to Marc and hope for more progress!

Webinar report: Inspiring examples from Norway and Australia

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.

Peer navigators

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.

What’s next?

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:

Read more?

We have for you a link to the articles from Anita’s PHD:

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0252623

https://www.sciencedirect.com/science/article/abs/pii/S0260691718301771

https://journals.sagepub.com/doi/full/10.1177/23259582211066401

https://journals.sagepub.com/doi/full/10.1177/15248399211049824

Here you can find more information about the background of PozQol: 

Watch more?

In this video we see an interview with Victoria from the peer navigators in Australia: 

Watch Positiva Gruppen Syds new video about Plusverket, their method of peer support!

Want to take the Pozquol survey yourself? 

https://pozqol.viivhealthcare.com/

Get to know Anton, infectious disease doctor in Malmö

Name: Anton Reepalu

Age: 36

Profession: Infectious disease doctor

Resides: Sofielund in Malmö

Why did you choose your profession?

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.

“It took almost ten years before I started dating”

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.

Who’s Suz?

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.

The Healthcare Committee in Region Skåne draws conclusions about HIV & peer support on incorrect grounds

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.