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.