Q&A “Collaboration is key to the crisis”

In this Q&A Interview, Anne-Karin Kolstad, Secretary General of HivNorway, sits down with the WGH Norway COVID 50/50 Task force and shares experiences of her long career in NGO leadership, political advocacy and lobbying.

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Anne-Karin Kolstad is the Secretary General of HivNorway, the country's only patient organization for people living with HIV. She has had a long career in NGO leadership, political advocacy and lobbying, particularly in support of individuals in need, from those living with HIV to those suffering from alcohol and drug use.


Image may contain: Person, Nose, Hair, Cheek, Skin.1. Tell us about your personal history and how it has led to your current work with HIV Norway?

For almost my entire life, I have been working for different NGOs, small and large, and within a variation of fields. I also have experience from working with people with different challenges. Before working in HivNorway, I was the Managing Director of Actis, a Norwegian policy network on alcohol and drugs. I find helping to develop organizations towards fulfill their potential as well as political advocacy to be especially motivating. HivNorway is the patient organization for people living with HIV and, when they began looking for a new Managing Director, I saw the potential in this small organization to give a stronger voice to people living with HIV and was eager to contribute.

2. Do you relate to WGH's Five Asks for Gender-Responsive Global Health Security in your work and how so?

Half the members of the HivNorway Board of Directors are women living with or affected by HIV. Strong patient involvement is one of our main focus areas, so HivNorway has recruited a woman living with HIV to act as its patient representative in the OUH clinic for reproductive health for people living with infectious diseases. Women living with HIV are also active in resource groups and as peers in our organization.

Even though approximately half of the population living with HIV are women, knowledge is poor regarding women-specific issues from living with HIV. Research instead focuses on male patients and most of the research subjects are male. At the same time, it is mainly consultant doctors at clinics for infectious diseases who hold the knowledge on HIV, its treatments, related health and diseases. There is a lack of knowledge amongst general practitioners with regards to women-specific issues. Woman living with HIV may, for example, experience menopause at an earlier age and the symptoms of menopause may be confused with side effects of HIV treatment. Such women may spend several years in discomfort and pain that could have been treated or relieved, so we need more knowledge on women and HIV, and gender needs to be addressed in research.

3. Can you tell us about your current work and how it has changed during the COVID-19 pandemic?

Specialized clinics for infectious diseases are responsible for HIV treatment in Norway. When the clinics closed for all patients except COVID-19 patients, HivNorway experienced a surge of incoming enquiries regarding uncertainty on access to treatment, on the risks for patients living with HIV being infected with or severely ill from COVID-19, and on the vaccines. 

For varying reasons, some patients did not have access to HIV treatment during this timeframe. Therefore, we worked closely – and still do – with clinics, specialists, pharmacies, the Directorate for Health, and the Public Health Institute to ensure access to treatment for people living with HIV and to always provide updated information to patients and risk groups, including for foreigners who have gotten stuck in Norway due to closed borders. Some people living with HIV in Norway are also migrants and have difficulties understanding Norwegian well. Thus, HivNorway has made information available in several languages. These collaborations have been vital for responding to the challenges and, in our opinion, the COVID situation has resulted in a better and closer dialogue with health care providers.

On the internal side of HivNorway, we have not been able to meet in person during lockdown and the staff has changed to home offices. From our homes, we have offered - and still do - counselling and support through phone and digital services. Seminars, meetings, and support groups have been held virtually, and we even held a large virtual conference on World Aids Day. Fortunately, the funding for our work has not been affected by COVID, so we have continued to be the strong voice and providers support, guidance, and information that our members need.

4. How has Norway’s population living with HIV been impacted – both in COVID-19 rates, as well as in terms of the required changes in lifestyle due to the pandemic?

There is no national register in Norway on COVID and HIV, so we do not know how many people living with HIV have been infected with COVID-19. But the national and regional lockdown restrictions and guidelines have had a huge impact. The knowledge on COVID and HIV was lacking from the beginning and the continuous updates of guidelines have led to some uncertainty among people living with HIV. The COVID situation changes quickly, so access to updated information is important. For example, HIV treatments might have interactions with other treatments, which is important to be aware of when it comes to vaccines for COVID. And this differs for instance between different vaccines, so the information needs to be detailed and accurate.

And, as a consequence of restrictions and social distancing, many people living with HIV have suffered from loneliness, isolation, and depression. For many, the only meeting points where they can be open about living with HIV without being stigmatized, have been closed. HivNorway has been available for conversations every day, including weekends and evenings, and has tried to arrange peers walks and socializing within the applicable infection control regulations. Meeting physically is crucial. But, looking back, access to a larger group who were prepared for giving peer support during lockdown situations and forced isolation could have been an important contribution to our work in fighting loneliness and depression.

5. How have women (assigned and identifying) living with HIV been affected during the COVID-19 pandemic?

There are approximately 4000 people living with HIV in Norway. There are very few places for people living with HIV to meet one another, especially outside of the capital. So, the seminars and meetings of HivNorway, and a few other local organizations, have been the only places for many people to actually meet. Prior to COVID, we held seminars and peer support groups for women to address women-specific subjects.

Since the pandemic, apart from a very successful virtual seminar, we have only managed to arrange one in-person seminar for women and that was last year, when the restrictions were briefly lifted. There have been several more attempts to arrange in-person meetings the women peer support groups, but unfortunately it has not been possible. This poses a challenge, since the need for support – and peer support – exists and less people are comfortable with participating in these types of virtual meetings, but in-person alternatives rarely exist.

6. What lessons (professional or personal) have you learned from the current pandemic – and throughout your career – that you might like to share?

In HivNorway, I have seen the success of strong teamwork. All our resources within the organization have been needed in order to meet the new challenges. Tight cooperation with scientists, specialists, the Directorate of Health, and other organizations on the HIV field has been crucial for overcoming challenges as well, and we are looking forward to continuing these excellent cooperations.

I have also learned to trust my employees even more than ever before. Delegation has become more important, with each of us isolated in home offices. You have to trust, and I feel I have really given responsibility to each individual. My experience has been that people grow, develop, and take more responsibility when you give them challenges. So, when we found ourselves in the middle of a crisis and had to mobilize and to change our efforts, everyone took responsibility. Our unity strengthened and has grown further, and everyone has stood up for one other. The openness that we have built has worked well in this crisis situation.

Interview Credit

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Chelsea Ranger | WGH Norway COVID 50/50 Taskforce



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Urusha Maharjan | WGH Norway COVID 50/50 Taskforce

The WGH Norway COVID 50/50 Task force serves as a national hub for COVID-19 and gender equity actions and activities. This ad-hoc task force is in support of the WGH Global's #COVID5050 Campaign, which introduced the Five Asks for Gender-Responsive Global Health Security in 2020 to help confront power and privilege. Both of which undermine global health by preventing women from contributing equally to the fight against challenges like COVID-19.

Published May 12, 2021 9:40 AM - Last modified May 23, 2022 3:18 PM