Mandatory disclosure in healthcare risks damaging public health work on HIV/AIDS
HIV-Sweden sent this text to the Ministry of Social Affairs by email on June 20, 2023.
The government intends to investigate whether public health care workers should report undocumented migrants. On SVT's 30 minutes in May, Minister of Justice Gunnar Strömmer stated that he does not intend to exclude any public employees in the upcoming investigation. If the proposal becomes reality, we may see more new cases of HIV, a larger number of unreported people living with HIV and a larger proportion of people with untreated HIV in Sweden.
Undocumented migrants living or staying with HIV in Sweden are currently entitled to care and medication under the Infectious Diseases Act. The law thus protects both the individual's life and health by providing access to treatment and prevents the spread of infection as HIV is not transmitted during treatment. The system is well balanced and a fundamental part of Sweden being the first in the world to reach the UNAIDS 90-90-90 target in 2015.
With the obligation to report that will now be investigated, we may instead see increased social exclusion with poorer infection control as a result. The proposal is intended to limit the right to welfare services, including health care, according to migration status. Infectious disease nurses, doctors and other health care professionals can then be required to report anyone who seeks care to test or treat their HIV and does not have the right to stay in Sweden. For individuals affected by the proposal, a sense of anxiety and resignation may arise. An imminent risk of deportation, together with the stigma associated with HIV, creates barriers to both HIV testing and access to medication.
Is the government prepared to risk the work against HIV/AIDS and public health? Will Sweden, which already has a dark history of criminalizing HIV, once again marginalize HIV and people living with HIV?
Sweden still needs a sensible and balanced public health policy on HIV/AIDS. Making people face the choice of either seeking care for their life and health, or being forced out of the country, is the wrong way to go. HIV-Sweden therefore calls on the government to take this letter into consideration and to exclude, to the smallest extent possible, healthcare professionals who meet people living with HIV or work with testing in the directives for a future investigation.
Eva Lilja,
President, HIV-Sweden
HIV-Sweden at Almedalen - Three keys to better public health work on HIV?
Deport everyone with HIV to Gotland - that was the call in the 1980s. What challenges do we face today?
In the last 40 years, medical developments on HIV have made tremendous progress! Why is HIV still surrounded by stigma, prejudice and fear? Why has the state of knowledge not kept pace with medical progress?
At Almedalen 2023, HIV-Sweden will highlight three keys to better public health work with HIV.
Tuesday 27 June - "No to whistleblowing in healthcare!"
Wednesday 28 June - 'Everyone should be able to live a good life with HIV'
Thursday, June 29 - "Introduce expanded health screening for people living with HIV"
Meet us at Almedalen at Skeppsbron, location H120, to discuss the proposals and talk about living with HIV. We will be there on Tuesday, Wednesday or Thursday between 13:00 and 17:00.
For more information or to set up a meeting, please contact Emanuel Karlström, Strategist, emanuel@hiv-sverige.se.
"Press nine for English" - Large differences in accessibility between infectious disease clinics across the country
Having constant and stable access to antiretroviral treatment is vital for people living with HIV. In Sweden, the Smittskyddslagen guarantees examination, care and medication for people living with HIV. Treatment saves lives and eliminates the risk of transmission during sexual intercourse, including unprotected sex. Getting treatment quickly after an HIV diagnosis and/or when moving to a new country or region within the country is also vital from a public health perspective. Ensuring access can prevent new infections and reduce late diagnosis leading to AIDS-related complications.
The country's infectious disease clinics now act as hubs for all those diagnosed with or affected by HIV. The clinics take relevant samples, make medical appointments and prescribe the vital antiretroviral treatment. For many people living with HIV, infectious disease clinics also become a source of advice and support. Here the first steps can be taken towards learning to live well with HIV, provided support is available.
Language is the key to equal access to care
Despite the central role of infectious disease clinics, accessibility varies. One aspect of accessibility is being able to offer people who do not speak Swedish language support and a way in to make contact and receive care. That knowledge of the Swedish language is a prerequisite for care on equal terms is by no means a new observation. The issue has been addressed in previous research and as late as 2022, the Swedish Public Health Agency also proposed "Interpretation and translation services in healthcare and other public activities". 1 as a development area to create more equal care. Reports from civil society organizations 2 at the same time show that satisfaction with the care provided at the infection clinics themselves is high, but this assumes that a contact has already been established.
It is difficult to know what proportion of visits to infectious disease clinics are made by people living with HIV in languages other than Swedish. Statistics from InfCare HIV, the Swedish quality register, show that 64% of all people living with HIV in Sweden were born abroad. The Swedish Public Health Agency states that about 3 out of 4 people have contracted HIV abroad. 3 . It is unclear whether this is due to vacation trips, immigration, returning Swedes abroad or other mobility. The regions also report their own statistics, often with the same parameters as the Public Health Agency of Sweden, but no indication other than where the person acquired HIV is usually shown.
Overall, it is likely that there is a significant need for interpretation, information/conversation in English and other languages, and other interaction methods to meet healthcare needs. To map and create a picture of accessibility in terms of language, we have surveyed and contacted the country's infectious disease clinics.
How did we go about it?
The list of clinics we used is based on information from the Swedish Association of Infectious Disease Physicians' website, slf.se. Through information from 1177.se, we have then retrieved contact information for each infection clinic.
As there is no email or contact form on 1177.se, we called the clinics on the referred direct numbers. This approach is a reasonable method considering that, for example, Mina vårdkontakter or messages through 1177.se require a Swedish personal number, which most people who are new to Sweden lack, even for a long time after arrival in Sweden. Calls to, for example, 1177, 112 or hospital switchboard often mean that the call is transferred to the direct number of the infectious disease clinic or that the number of the infectious disease clinic is given out. In addition to physically visiting a clinic, the direct number and telephone contact with the infectious disease clinics is therefore crucial.
Through telephone calls to the infectious disease clinics, we have gathered information to be able to map whether language choice in English is offered or whether the call is answered by a person who can communicate in English during the clinic's telephone hours, whether there are instructions and the opportunity to leave a message in English (in the case of language choice in English), that the language choice is mentioned early in the call in order to be able to catch the caller early, and whether there are button choices or information in English outside telephone hours. To ensure the fairness of the survey, we called each office at least twice, on different days and times. English gets in this survey acts as a kind of surrogate measure to create a picture of accessibility outside the Swedish language. More languages or other interaction methods could also be explored, but we have not encountered any during this study.
Result
Clinics are sorted by results into groups A, B and C.
Group A
Group B
Group C
What does the survey say?
The overall picture shows significant differences in the way clinics handle telephone calls. The differences are not only evident between regions, but also within regions, which may indicate that telephone hours and language choice are not standardized. Metropolitan areas seem to have a slightly higher level of accessibility, while there is a tendency for clinics in smaller cities to more often staff telephone hours or have no language selection buttons at all. The fact that clinics have different solutions for ensuring accessibility based on their own context does not necessarily mean that this is a problem. Perhaps staffing a telephone is appropriate for some or using an answering machine is appropriate for others. But whatever the solution, the solution needs to be suitable for the users of the reception's services, and to get there, the organization needs to understand the target group. Is this done sufficiently today?
It is noteworthy that at two clinics, the call is disconnected after English is selected with a button. While some clinics do provide direct numbers or 'work phone' numbers for people living with HIV to call, this is of little help to those who do not already have these contacts. In discussions with an infectious disease clinic, health professionals commented that language selection during and after call time was not something they had considered, as they do not use this type of service themselves.
In addition to the interaction of phone calls, there is also an information barrier. Telephone hours are displayed as "Closed today" on 1177.se during the times when the telephone hours are closed, but at the same time do not provide information about when they open. In practice, this means that the person seeking information may need to be on 1177.se and the clinic's page in real time to understand when the clinic has telephone hours. The fact that telephone hours can then mean 1. that the telephone is manned and calls are answered 2. that it is the time when an answering machine with the possibility of leaving messages is open or 3. that the answer is a tele-answer with reference to button selection, makes telephone hours a confusing concept, which risks making accessibility, and thus also the possibility of care on equal terms, more difficult.
Language support should be a matter of course in all clinics in the country.
Implementing a change in healthcare is in itself often laborious and time-consuming, but offering basic language support can still be considered low-hanging fruit. There is ample opportunity for practices to learn from each other, especially given that technology such as English button selection, voicemail or information in English is already in use.
In our work at HIV Sweden, we help and guide people who are new to Sweden and/or lack knowledge of the Swedish language to come into contact with healthcare. We will continue to do this, but in many clinics we need to see a real shake-up, so that care can be provided on equal terms throughout the country and to everyone.
1 HIV in the shadow of exclusion -An interview study with migrants living with HIV in Sweden, Public Health Agency of Sweden, 2022.
2 Hiv-treatment for immigrants in Sweden - access a struggle, but overall good experiences once contact established, Positiva Gruppen Syd, 2021
3 HIV infection - disease statistics 2021, Public Health Agency of Sweden, 2022
HIV-Sweden has a new President in Eva Lilja.
On Sunday, April 23, Hiv-Sverige held its annual meeting and a new chairman was elected. Eva Lilja, who has been active in the Positive Group West and Hiv-Sverige for many years, is back as chairman.
'It is an honor to have been elected President of HIV Sweden. I thank you for your confidence and look forward to representing the organization. My guiding principles have always been, and still are, everyone's equal value and human rights. Working on issues related to HIV-related stigma and knowledge dissemination is important to me. This so that people who live with and are affected by HIV should always feel trust and confidence towards healthcare, the state, regional and municipal activities and towards us organizations has and will continue to be important to me. As an active member of Positiva Gruppen Väst since 2012, I know that our organization is important for people living with HIV and I want it to continue to be so."
- Eva Lilja
Eva Lilja, President of HIV-Sweden
