Categories
Uutiset

“I look healthy, but I am sick at heart”: Anna’s Journey with HIV in Finland

When Anna was diagnosed with HIV, she was overwhelmed with fear and uncertainty. Originally from Africa, she has always been told that an HIV diagnosis was a life sentence. In her home country, the stigma and lack of information about HIV/AIDS often left people feeling hopeless, beyond help. But her journey took a different turn when she discovered Positiiviset HivFinland, an organization that supports individuals living with HIV in Finland.

Discovering Positiiviset HivFinland

Anna first learned about Positiiviset through a nurse at the hospital where she received her diagnosis. The nurse, whose name Anna still remembers for her professional manner, gave her a phone number and encouraged her to reach out. When Anna called, she spoke to Jenni, one of the organization’s peer support members. “Her voice was calm and nice,” Anna recalls, “She just asked me to visit the meeting place in Kamppi.”

Despite her initial apprehension, Anna agreed. Her biggest fear was seeing other people from her home country. The stigma associated with HIV in her community is overbearing, and she was terrified of being in contact with her countrymen. 

First contact and impressions

Anna’s first visit to Positiiviset was a turning point. She was surprised by the warm, welcoming atmosphere. “I asked if there were gonna be many people,” she said, “Jenni reassured me it was going to be a private meeting and this helped me feel more comfortable.”

Before coming to Positiiviset, Anna believed that having HIV was a death sentence. “In Africa, we believe if you have AIDS, there is no going back. You are done.” But through the information and support she received at Positiiviset, Anna began to realize that this wasn’t at all true. The organization helped her understand that with proper treatment and support, people with HIV can lead long and healthy lives.

A new perspective 

One of the most significant moments for Anna was meeting S., a woman who has been living with HIV for 30 years. “At the hospital, I was just scared,” Anna explains, “but after meeting Suvi, I started to hope. She is living 30 years with HIV, and she is doing great.” This encounter gave Anna a new perspective on her diagnosis and a sense of hope for her own future.

Anna admits that although the hospital staff treated her very well, her time there was filled with fear and anxiety. “At the hospital, all I got was a diagnosis of AIDS,” she says. It was only after coming to Positiiviset that she began to see beyond the diagnosis and started to focus on life and about how to live.

Advice to Other Foreigners Living with HIV

For other foreigners living in Finland who might be struggling with an HIV diagnosis no matter how recently they were diagnosed, Anna has one simple message: “Come and visit. They will know they now have a family.” She emphasizes the importance of finding a community that understands and supports you, especially when so far away from home.

Additional Challenges

As an asylum seeker, Anna faces more challenges than learning to live with HIV. She is currently seeking support with her application to stay in the country and find employment. Finnish language courses are finally starting after a long wait and now she hopes to receive assistance with job applications as a cleaner or personal assistant while learning Finnish. Despite these hurdles ahead, she remains hopeful and determined. ‘’I am excited school is starting!’’ she admits to me while a tiny grin is forming.

When I asked Anna what she would wish for if she had a magic wand, Anna without hesitation wished to remove HIV from her life and to have her children with her in Finland. These desires underscore the emotional and practical challenges that many asylum seekers, refugees and immigrants living with HIV face, particularly those who are separated from their families, struggle to learn a new language, comprehend and adjust to a culture so different from their own.

The key to a heart in healing

Anna feels safe and welcomed at Positiiviset, but she hopes to see even more encouragement and connection within the community. “I might look healthy now, but I am sick at heart,” she says, expressing a desire for more people to reach out to her. She longs to hear more stories of how others have moved on with their lives, providing her with reassurance and inspiration to carry on. Listening to her words, which deeply touched my own heart, I recognized once more that ‘’connection’’ is one of the keys towards healing.

“Coming here is like coming to my peace.”

A place of peace

When asked what word comes to mind when she thinks of Positiiviset, Anna responds, “Coming here is like coming to my peace.” For Anna, Positiiviset is not just a support group—it’s a place of peace, hope, and connection. Through the warmth and understanding of the staff and peers, Anna is finding more and more the strength to face her diagnosis with courage and optimism.

Positiiviset has given Anna more than just information and support; it has given her a sense of belonging in a place where only feelings of loss, grief and separation used to exist. Her journey with HIV in Finland is a testament to the power of community, empathy, and the belief that life can still be very worth living, even in the face of adverse challenges.

You can read more information about HivFinland’s support and counselling services here.

You can contact us by calling (09 692 5441), via e-mail (positiiviset@positiiviset.fi), or by sending a message in WhatsApp (+358 44 750 7460). We are here for you.

Categories
Uutiset

Discussion on HIV Treatment & Care with Doctor Jussi Sutinen: A Recap of Our Event

A lot has changed in the world of HIV treatment and care since the early 1990s, when Dr. Jussi Sutinen first began working with HIV patients.

In October, we had the privilege of hosting a lively and informative discussion with him, both at our premises and online, allowing anyone living with HIV from all across Finland to participate.

It was a much-anticipated event, filled with engaging conversations during a session that lasted over three hours. We listened to Dr. Sutinen’s presentation, asked questions, shared a meal, and enjoyed a few laughs while getting to know each other and delving deeper into the subjects discussed.

In this article, we aim to capture the essence of the meeting, covering the topics discussed with Dr. Sutinen, an infectious disease specialist in HIV treatment and care at HUS. Whether you attended or are just reading about it now, we hope you feel like you were part of this unique event.

U=U

The principle of U=U, meaning that an undetectable viral load makes HIV untransmittable through sexual contact (even without condom), has been globally accepted and is a major milestone in HIV care. The medical community is now focused on spreading awareness of this fact, as it helps combat stigma and promotes a more informed public understanding of HIV. Despite strong scientific backing, U=U remains under-recognized by the general public, contributing to lingering fears and misconceptions. Quoting Dr. Sutinen: “There is a wealth of evidence on U=U, yet in people’s minds, it can still be a concern.” It remains puzzling why there is doubt among many when the medical community is convinced of U=U’s scientific validity, as Dr. Sutinen reconfirms.

The Legal Framework Around HIV in Finland

Finland has made significant strides in updating its interpretation of criminal laws in the context of HIV and people living with HIV emphasizing the rights of patients and reducing the stigma associated with the virus. One pivotal legal moment in recent years was the 2021 Supreme Court decision that overturned a previous court ruling, which sentenced a man to two years in prison for not disclosing his HIV status to his female partner before having unprotected sex. The man, who was on effective antiretroviral therapy with good treatment response, did not transmit the virus. The Supreme Court recognized the medical fact that good treatment response makes the virus untransmittable (U=U), thus removing the requirement to disclose his HIV status under these circumstances.

This landmark ruling not only reinforced the scientific consensus behind U=U but also marked a significant step in the fight against HIV-related stigma in Finland. The decision was praised by healthcare professionals and HIV activists. The ruling sets a strong precedent for how HIV is viewed legally in the country, making it clear that scientific advancements must be reflected in the justice system.

PrEP (Pre-Exposure Prophylaxis) & PEP (Post-Exposure Prophylaxis)

PrEP, a medication taken by HIV-negative individuals to prevent contracting the virus, continues to expand globally. In Finland, access to PrEP has improved, but the waiting times can still be several months. 

Concerning PEP, Dr. Sutinen highlighted the importance of requesting the medication immediately if exposure to HIV is suspected. Even if it is the middle of the night, get yourself to the emergency room. The sooner you receive the first dose of PEP (provided there is adequate exposure to risk factors), the better.

Possible Side Effects of HIV Medication: Weight Gain

One side effect gaining attention is suspected weight gain associated with some antiretroviral drugs. While these medications are highly effective at controlling HIV, there have been reports of metabolic changes and weight gain, especially among women and people of African descent.

Dr. Sutinen pointed out that, as we age, there is a documented increase in body weight—about 1 kg/year in Western industrialized countries. However, according to a recent studies comparing the newer Tenofovir medication (TAF) to the older generation (TDF), the latter has appeared to restrict weight gain compared to the TAF. If you are concerned about weight gain or any other side effects, we recommend discussing it with your physician.

New Medications and Treatments

Injectables

Offering an alternative to daily oral medication, injectables are here to stay. A small number of patients (currently about 35 in the Helsinki region) are using injectables and receive two  injections every two months at the hospital. According to Dr. Sutinen, “efficacy is a bit lower than that of the best tablets.” Reach out to your doctor for more information on injectable treatment options.

‘’Islatravir’’

This promising new drug, currently in Phase 3 trials and awaiting final approval, offers extremely potent HIV treatment in smaller doses than anyy other HIV-medicine.. There are also ongoing efforts to develop Islatravir as a subdermal implant, and also for prevention use.

Cholesterol Medication and HIV

Long-term antiretroviral therapy (ART) can increase cholesterol levels, which puts certain patients at a higher risk of cardiovascular issues, including strokes and heart attacks. Cholesterol medications can decrease the overall inflammation levels in people living with HIV, thereby lowering the risk of cardiovascular diseases.

Dr. Sutinen discussed a recent study in which one group of patients (with moderate or a low risk of cardiovascular diseases) took a placebo, while another group took statins (cholesterol medication). Those receiving statins showed a significant decrease in cardiovascular risk events. He mentioned that using statins may be an important preventive measure, especially for patients with elevated risk factors (e.g., family history of strokes or high cholesterol-related conditions).

Experimental Technologies for HIV Treatment and Prevention (CRISPR, Vaccines & Implants)

We discussed the ongoing research into a functional HIV cure using CRISPR technology. In 2023, researchers at Temple University in the U.S. successfully used gene editing to remove HIV DNA from infected cells in animals. However, according to Dr. Sutinen, we are still far from significant treatment or prevention via CRISPR technologies.

Clinical trials for HIV vaccines are still underway, but it may take time until they reach the approval phase.  Additionally, implant technology for subdermal HIV medication is still experimental. Dr. Sutinen mentioned that current implant technology releases medication faster than optimal, and further testing is needed before it becomes a viable treatment option.

Traveling as a Person Living with HIV

While most countries allow travelers living with HIV without restrictions, a few still impose limitations or require specific documentation. Dr. Sutinen recommended checking www.hivtravel.org for up-to-date information on specific countries’ regulations.

We want to thank Dr. Jussi Sutinen for his time and expertise, as well as all who joined us for this special event. It was a memorable evening that not only deepened our understanding of HIV treatment and care but also strengthened the bonds within our community. 

We look forward to more events like this, where we can continue to learn, support one another, and work together toward a healthier, more empowered future for all those living with HIV through access to accurate, scientific information.

‘’Vinkit’’ aka Tips from Dr. Jussi Sutinen

Dr. Sutinen emphasized the importance of lifestyle choices in managing HIV. Eating a balanced diet, exercising regularly, and adhering to medication regimens are vital to maintaining health and reducing complications.

He also gave the following advice:

  • Stay connected with your doctor and mention anything that concerns you early in your appointment. “Share your most important concerns first,” Dr. Sutinen encouraged.
  • Answer the pre-appointment questionnaire: “We do read your answers,” he reassured.
  • Measure your blood pressure at home before coming to the hospital (or go to a pharmacy if you don’t have a monitoring device). “Blood pressure often appears higher when measured at the hospital.”
  • Avoid consuming ‘’salmiakki’’ (salted licorice), sweetened licorice, or excessive salt 8-10 hours before your blood pressure measurement.
  • Dr. Sutinen urged those living with HIV to reduce or quit smoking: “Smoking is more harmful to people with HIV compared to those without the virus.”
Categories
Uutiset

Mental health issues and stigma go hand in hand

On this World Mental Health Day, we remind you that stigma is not only harmful in itself, but it can also increase mental health challenges.

Internalized stigma or self-stigma refers to the process where individuals adopt negative societal attitudes about their status, leading to feelings of shame, worthlessness, and self-blame.

People living with HIV often experience internalized stigma and begin to develop negative self-image and thoughts about self. They may fear they will be discriminated against or judged negatively if their HIV status is revealed.

These harmful attitudes not only affect their self-esteem and mental well-being but also hinder their access to healthcare and social support systems. This can affect the mental health of people living with HIV.

Today is World Mental Health Day

Today, Sini from Positiiviset is speaking about the results of the Stigma Index Finland in a Webinar. The webinar aims to explore the connection between internalized stigma and the mental health challenges experienced by people living with HIV. Read more and register for the webinar here.

What? Webinar called Internalized Stigma and Mental Health Among People Living with HIV

Where? In Zoom

When? On Thursday 10th October at 16:00 (Finnish time)

What is Stigma Index?

What is it like to live with HIV in Finland? What kind of stigma or discrimination do people experience because of HIV? Answers to these questions and more were found in Stigma Index survey conducted by Positiviset ry and developed by international organizations. The report can now be read here.

Categories
Uutiset

Move and exercise with Positiiviset HivFinland

Weightlifting with a world champion

On October 10th from 18:00-19:00, train with three-time powerlifting world champion Nuno Nobre in our exciting weightlifting class. 

Whether you’re new to lifting or looking to improve, this is a fantastic opportunity to learn from a champion!

Gym sessions every Monday

We also offer gym sessions every Monday for all fitness levels. 

Jo will introduce you to the gym’s equipment and guide you through simple exercises targeting every muscle group. 

Come build strength, stay healthy, and connect with our supportive community!

Ask for more information from Jo (joanna.samona@positiiviset.fi) or call (09) 692 5441   or send us a WhatsApp message at  +358 44 750 7460

Jo will introduce you to the gym’s equipment.
Categories
Uutiset

African night for Women living with HIV on October 30th at 17:00 in Helsinki

Dear Women,

Join us for a vibrant and welcoming evening, celebrating sisterhood and African culture! This special gathering is open to all women living with HIV, from all backgrounds & regardless of how long you have been living with HIV or been in Finland. Finnish ladies, African sisters and women from everywhere else are warmly welcomed!

Come connect with others, enjoy delicious African food, and bask in an evening filled with music, laughter, and community.

What’s Happening?

  • Music
  • Women’s Circle
  • Delicious African cuisine
  • Good company and conversations

This space is reserved just for women, ensuring a safer, more supportive environment we can co create where we can come together and celebrate life.

The event is held in Positiiviset ry meeting place in Kamppi, Helsinki. The address is Malminkatu 24 C 00100 Helsinki.

To participate, register via this link – we can’t wait to see you there!

Positiiviset HivFinland is a non-profit organisation by and for people living with HIV. We offer support, information and counselling for everyone affected by HIV. Our services are free of charge and bound by confidentiality.

Categories
Uutiset

HIV Treatment & Care Information Session with Doctor Jussi Sutinen

Join Our HIV Treatment & Care Information Session with Doctor Jussi Sutinen

We warmly invite you to take part in an open and supportive discussion about HIV treatment. Usually we organize events in Finnish, but now for the first time we are organizing one exclusively in English!

We encourage you not to miss this unique event!

Whether you’ve been recently diagnosed or have been living with HIV for a long time, this space is for everyone — no matter where you are on your journey. You are welcome to participate, whether you’ve been positive for years or are newly navigating your treatment options.

This session is designed to answer any questions you may have about HIV treatment and to provide a safe and inclusive environment for open conversation. 

Are you curious about how to get started on treatment or how to optimize the one you’re currently on? Perhaps you’re wondering about the latest advancements in treatment and care or how to manage potential side effects. This is the place to ask or just visit to hear Jussi’s presentation!

Here are some examples of what we can explore together:

  • What are the most up-to-date treatment options available?
  • What is important in the context of treatment?
  • What can I expect if I’m switching or adjusting my treatment?
  • Are there alternative therapies or new developments in treatment I should be aware of?
  • How can I talk to my healthcare provider about changing my treatment plan if needed?
  • What lifestyle choices can help me stay healthy while on treatment?

We understand that treatment is a personal journey, and you might be wondering how it fits into your day-to-day life or long-term goals. Whether you’re starting treatment for the first time, considering a switch, or looking to optimize your current plan, this session is a space for you to connect with others who may have similar questions or experiences. These are also topics people talk about in peer support meetings.

Our discussion will cover a wide range of topics, including:

  • Staying on treatment consistently and effectively
  • The impact of treatment on long-term health and quality of life
  • Managing treatment alongside other health conditions
  • The future of HIV treatment — what’s on the horizon?

Whether you prefer to actively participate or just listen, everyone’s experience is valuable. We encourage you to share your thoughts, ask questions, and connect with a supportive community that understands the challenges and successes of living with HIV. Together, we can create a space for learning, growth, and understanding, no matter how long you’ve been on your treatment journey.

Different ways you can participate

There are many ways to participate in this event! 

  • Attend in person, ask your own questions or listen to the ones others ask, enjoy the snacks and the supportive atmosphere with us.
  • We are collecting questions in advance to ensure Jussi can address as many questions as possible. If you would like you can send your questions in advance either anonymously or not, using our registration form below.
  • If you are unable to attend, apart from the option of you sending us your question(s) in advance, there is also the opportunity to read about the information shared in this event in our next digital or printed newsletter (Poveri).

Event Details

  • Date: October 9th
  • Time: 17:00 – 19:00 (presentation and Q&A), 19:00 – 20:00 (discussion and mingling)
  • Location: our space in Kamppi, Malminkatu 24C 

Please register to the event here

Welcome to  enjoy snacks and refreshments, hear all that is new in treatment and  get to know fellow attendees in a relaxed and supportive environment.

We look forward to seeing you there, 

Positiiviset ry/HivFinland 

Categories
Uutiset

Somatic Wednesdays with Jo

This autumn Jo will offer more of her work as a Somatic Intimacy Coach, enriched with nervous system knowledge and her recent massage training.

Jo will be sharing practices for: 

  • Stress and anxiety relief 
  • Body – mind awareness 
  • Massage  
  • Nervous system regulation 
  • Being in deeper connection with what we need and want at a mind-body level 
  • Consent & empowerment through voice & choice 

These practices are for you if: 

  • You are willing to attend with curiosity and openness  
  • You want to invite the possibility of feeling more relaxed, alive, connected to yourself and others 
  • Want a safer space to share, be yourself and practice listening with curiosity and compassion 

About the meetings: 

  • No practice is ever mandatory. You are welcome to try out and participate as much or little as you want. Everything is invitation based. 
  • Even though you are welcome to participate in some of the above, to benefit most Jo warmly suggests you attend from the beginning and as many of the meetings as you can.

If you want to ask anything about the meetings, send a message to Jo (joanna.samona@positiiviset.fi)! 

Schedule and themes 

The meetings last from 17:15 to 18:30/19:00 (Depending on the number of participants and content facilitation time will vary depending on the needs of the group. You are welcome to participate for as long as you want. Warm request that you arrive well on time so we can all settle in the space) 

September

18.9. Somatic Thai Yoga Massage: paired massage exercises for all (this type of massage takes place fully clothed and on the floor on top of yoga mats/blankets. Please bring your own if participating)

October

2.10. Embodied Consent part 1 (for women only)
16.10. Embodied Consent part 1 (for everyone) 

November

6.11. Embodied Consent part 2 (for women only)
13.11. Embodied Consent part 2 (for everyone) 

Joanna ‘Jo’ Samona is working part time in Positiiviset. You can contact Jo directly: joanna.samona@positiiviset.fi. Jo speaks also Finnish.

Categories
Uutiset

Welcome to our  English speaking meetings!

Positiiviset ry is an advocacy organisation for people living with HIV. We aim to maintain and improve the well-being of people living with HIV. We arrange a wide range of meetings for people living with HIV.

English-speaking group

  • We chat in a relaxed atmosphere about anything that is on our mind,
  • welcome to express ideas around future group activities and make plans together with us,
  • sip tea or coffee and nibble on tasty snacks.

Our meetings are always confidential and you can share as little as you want. You are also welcome to just sit comfortably and  listen.

Meetings are from 17:00- 19:00 in Kamppi, Helsinki. Upcoming meetings:

Drop in visits

Did you know that in Positiiviset ry (HivFinland)  we speak English amongst other languages? We would love to chat with you about all HIV related subjects, the one’s above and more! Welcome to drop by during office hours or give us a call  to (09) 692 5441. You can also contact us via WhatsApp (+358 44 750 7460)