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!