Response to interpellations 2023/24:307 and 320 on the duty of disclosure in the Communicable Diseases Act

Socialministern Jakob Forssmed (KD)

Madam Speaker! Ulrika Westerlund has asked me what measures I and the government will take to honor the Riksdag's announcement from March 2020. Anna Wallentheim has asked me when I and the government plan to present proposals that completely abolish the duty of disclosure for HIV-positive individuals in order to further promote non-discriminatory and inclusive social norms.

Let me begin by stating that it is very pleasing that, with well-managed HIV, there is no risk of transmission of the infection during sexual contacts. This is reflected in the knowledge bases and guidelines from Folkhälsomyndigheten and Smittskyddsläkarföreningen. These knowledge bases have led to a changed application of the provisions in the Communicable Diseases Act (2004:168) regarding the duty to inform. For persons living with HIV who have a well-adjusted treatment, the treating physician can now decide to remove the requirement for the duty to inform from the rules of conduct that the patient receives.

In the survey study "Living with HIV," approximately two-thirds of patients with HIV stated that their treating physician had exempted them from the duty of information. Those who participated in the study also rated their quality of life as high and were satisfied with life in general, even though challenges with stigma remain. It is worrying that there are people living with HIV in Sweden who experience mental ill-health and stigma linked to their HIV diagnosis. So it should not have to be.

An important part of countering this is to increase public knowledge about the conditions for those living with HIV. Here, the Public Health Agency, civil society, as well as regions and municipalities, are doing very important work. In order to, among other things, be able to intensify this knowledge dissemination, the government decided to increase the Public Health Agency's appropriation for both measures against HIV/AIDS and other infectious diseases as well as for state grants to non-profit organizations as the Public Health Agency's measures at the national level in the budget for 2023. For 2024, it is proposed that the appropriation be increased by an additional 25 million kronor.

It is important to remember that even though today's treatment is very effective, there is still a need to be able to take infection control measures for persons who do not have a well-adjusted treatment or who, for various reasons, have difficulties fully following the treatment.

In April 2023, the Public Health Agency reported its basis for an updated national strategy against HIV/AIDS. In the assignment, the developments of recent years are highlighted in, among other things, issues concerning risks of transmission of HIV in different situations, and that the Public Health Agency shall work to ensure that the measures implemented are in accordance with the current state of knowledge. One of the proposed sub-goals in the basis is that stigma and discrimination related to HIV infection are eliminated, and one of several proposed measures is to investigate the requirement for the duty to inform. The Government views the proposal for such an investigation positively.

The material from the Public Health Agency is currently being prepared in the Government Offices.

The speech at riksdagen.se, in Swedish (opens in a new tab)

Ulrika Westerlund (MP)

Madam Speaker! I thank the Minister for Social Affairs for the answer and the opportunity to have this debate.

In my interpellation, I began the historiography of this issue in March 2020, but now I would like to take the opportunity to go back even further because this is an issue that has truly been dragged out.

In Sweden, there are several organizations that have worked for a very long time to change the Communicable Diseases Act so that the duty of disclosure is removed. Some have done so ever since HIV was introduced into the Communicable Diseases Act in 1985. I mention this to emphasize that the perception that the duty of disclosure should be removed for people living with HIV has nothing to do with recent, very pleasing medical successes, which have resulted in undetectable and therefore non-transmissible virus levels. These successes have admittedly given those who want to remove the duty of disclosure additional arguments, but they are very far from the sole reason why I and obviously a parliamentary majority, at least during the last mandate period, want to remove the duty of disclosure.

For me and many engaged organizations, one of the absolutely most important reasons for this desired change is HIV prevention. The purpose of the Communicable Diseases Act is indeed disease prevention, so it may seem strange. But regarding the duty to inform for people living with HIV, it becomes counterproductive.

RFSL notes, for example, on its website that the duty to inform takes focus away from the most central message of HIV prevention: that all persons in the sexual encounter bear the responsibility to protect themselves and their partners. RFSL, which has worked with HIV prevention since HIV came to Sweden, further writes that it is most often persons who do not know that they have HIV who transmit HIV to others. For this group, of course, no duty to inform applies as they know nothing and therefore have nothing to tell. The duty to inform is therefore counterproductive, and it contributes to stigmatizing persons living with HIV who know their status.

13 years ago – this is, as mentioned, a small history lesson – RFSL, RFSU and Hiv-Sverige had the joint project Hiv, brott och straff which aimed to change the Communicable Diseases Act in the way we are discussing here today. At that time, Sweden stood out very negatively, because we were one of the countries in the world that prosecuted the most people living with HIV, precisely because of the design of our Communicable Diseases Act. Since then, a lot has happened, and precisely this problem is likely no longer relevant.

For some years, for example, there has been an opportunity for treating physicians to waive the duty of information from their patients. But as RFSL notes, the knowledge that one can have the duty of information waived varies among both people living with HIV and treating physicians. This is likely the reason for what the Minister notes in their response: that two-thirds of the HIV patients in the survey study stated that their treating physician had exempted them from the duty of information. If all those who had a well-adjusted treatment had had the duty of information waived, the proportion would have been much higher.

Completely aside from this, it is my opinion that the duty of disclosure is counterproductive from an HIV prevention perspective, regardless of how well individual persons' treatment works. The most important thing is not what is said, but what is done.

The speech at riksdagen.se, in Swedish (opens in a new tab)

Anna Wallentheim (S)

Madam Speaker! Later this year, I can celebrate that I have been a member of the Riksdag for ten years. For ten years, I have been allowed to be in the chamber and fight for social democracy and issues I am passionate about. Looking back on these years, I see common threads in some of my motions and in interpellations and questions to various ministers and various governments. One of these common threads is school and education, where the teacher in me pushes forward. Another is sports, because the sports enthusiast in me wants to see that more and more children, young people, and adults should be able to participate in sports throughout their lives. But what I have motioned about most of all are LGBTQI issues. As a human being, a mother, and a social democrat, I think it is incredibly important that all people in Sweden, regardless of gender, sexuality, or identity, should be able to feel that they have the same rights and opportunities to act in our country.

Madam Speaker! In Sweden, however, we still have a situation in 2024 where strange laws and rules mean that people cannot live their lives to the full. We even have laws that make these people criminals. Therefore, I stand here today and argue that we must talk about abolishing the duty of disclosure.

A relaxed duty of disclosure would, in fact, be an important change and a great victory for those living with HIV today. The duty of disclosure means, as we have heard both from the Minister and from the previous interpellor, that people today must inform their partners if they have HIV unless a doctor says otherwise or removes the requirement.

This has created a large and unnecessary burden and a stigmatization for those living with HIV today. If the duty to inform is removed, this means according to Swedish legislation that people living with HIV can no longer be criminalized if they do not inform their sexual partners. It is a victory that gives them the freedom to no longer be seen as criminals, and that is where I want to place my emphasis.

We know, as has also been mentioned here in the rostrum, that it is most often people who do not even know that they have HIV who are the ones who transmit the virus. We also know that people with treatment, just as the minister and the previous interpellor have mentioned, cannot transmit HIV today.

I am well aware that the infectious disease legislation has its purpose, but I believe it is precisely the duty of information that has played out its role. Sweden needs legislation that promotes good preventive work and that creates a safe environment where people can be open about their HIV status without being afraid of being discriminated against or stigmatized.

It is a necessary change, which would mean that today's legislation is adapted to today's state of knowledge, namely that treated HIV cannot be transmitted through sex. It is time to reshape the legislation to better correspond to our knowledge as it stands today and create a society where everyone can feel safe and respected.

I find it positive in the minister's answer that the government both sees the issues surrounding the well-being of HIV-positive people and wants to highlight that it is important that we increase people's awareness regarding HIV. This also applies, of course, to other sexually transmissible issues. One also wants to review the conditions for those people who live with HIV.

It is pleasing that the government considers this to be a work in progress, that one is actually prepared to investigate the abolition of the information obligation and that this is being prepared in the Government Offices.

Therefore, I would like to ask: When can we expect the investigation to be underway? As the previous interpellor mentioned, this is an announcement from the Riksdag. We thus have a Riksdag that is prepared to vote for an abolition of the duty of disclosure, if it looks the same as the previous parliamentary term. When can we expect that this begins to be investigated?

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Socialministern Jakob Forssmed (KD)

Madam Speaker and the interpellants Wallentheim and Westerlund! Thank you for the historical overview - it was very good! This is an issue that we have lived with for a long time and that many people have lived with for a long time. That means there are reasons to discuss it and constantly see things in a new light.

I also want to take the opportunity to extend a thank you to Ulrika Westerlund. I know that she has personally worked a lot with these types of issues and also played a role in reducing the stigma for people living with HIV. We need to continue with this work.

It is pointed out that there are still deficiencies in knowledge regarding the current legislation, which could mean that even more did not need to have this duty. For some, it might also not be a relevant issue in relation to the treating physician. One might live in a life situation where this is not a major issue, for example, in a long-term relationship where the partner already knows about this. It is therefore difficult to know exactly why the statistics look the way they do.

I would, however, like to say that we are now, in fact, increasing the support to not least the civil society organizations via Folkhälsomyndigheten to further increase knowledge and reduce the stigma surrounding the issue so that fewer people will perceive that they are affected and suffer - not from the disease itself, but from the surroundings' attitude towards them because they carry the virus. We share that ambition, and I am glad that we are now increasing the support.

There are many aspects in the question if one looks at the history of why things are as they are. It is partly about a will from the legislator to try to have equal treatment and a legally secure treatment and to treat diseases in approximately the same way and such things in the legislation. That is what remains. It is also about being able to adapt the infection control measures based on new knowledge and the need for measures in the individual case. That type of possibility should exist. These are, of course, difficult trade-offs: What are the best methods to ensure that as few as possible are affected by becoming infected?

As I noted in my response, in addition to an announcement regarding the need for a review of the legislation, we have also received a basis from the Public Health Agency (Folkhälsomyndigheten) where they point out the need to investigate this. It is something that the government views positively.

To answer Anna Wallentheim's question: We will have to get back with the exact time and form for this.

The speech at riksdagen.se, in Swedish (opens in a new tab)

Ulrika Westerlund (MP)

Madam Speaker! Thank you, Minister for Social Affairs, also for this answer! Since the history lesson was appreciated, I will continue with it for a while longer.

In the project that I mentioned earlier from 2011, which RFSL, RFSU and Hiv-Sverige drove, reference is made, among other things, to Unaids, the UN's body for issues concerning hiv and aids. They published a policy paper already in 2008 which dealt with the criminalization of hiv transmission. It states, among other things, as follows, in my slightly shorter version:

There is no data showing that a broad application of criminal legislation against HIV transmission yields any effects, either in terms of law enforcement or for the prevention of HIV transmission. Therefore, Unaids urges governments to limit criminalization to cases of intentional transmission, that is, when a person knows that they are HIV-positive, acts with the intent to spread HIV, and actually transmits the virus. In other cases, legislators, prosecutors, and judges should not apply criminal legislation. Criminal legislation should in particular not be applied in cases where there is no significant risk of transmission or where the person, for example, did not disclose that they were HIV-positive for fear of violence or other negative consequences, or took reasonable measures to reduce the risk of transmission, for example, by practicing safer sex through the use of a condom.

Since this paper was presented, 16 years have passed. Much has happened during these years, as has been said. Medication has become much more effective, and doctors have the opportunity to release their patients from the duty of disclosure. But the fundamental problem of having the duty of disclosure in the Communicable Diseases Act remains. It does not improve HIV prevention. It sends out a counterproductive message that risks placing people in a kind of false sense of security: If no one has said that they have HIV, then no one has HIV, and then I do not need to take responsibility for protecting myself from having the virus transmitted.

The message that must be conveyed most clearly for effective HIV prevention is that no one else can protect you from having the virus transmitted; only you yourself can do that. In a sexual encounter, you cannot know if the person you meet is living with HIV because they might not know it themselves.

In an effective HIV prevention, it must also include that there are no barriers to testing. No one should even consider not getting tested for fear of being subject to an information obligation. Of course, testing must always be available, and no one shall be denied a test. This is unfortunately not always the case in Sweden, and we must work to ensure that it becomes so.

The duty of disclosure therefore does not contribute to effective HIV prevention. On the contrary, it contributes to stigmatizing people living with HIV, which was pointed out here by Anna Wallentheim. This was also pointed out by the then UN Secretary-General Ban Ki-moon in a speech to the UN General Assembly in 2009 – I will continue with the somewhat long-winded historical account. I think it is worth repeating his words, as they are still relevant. Among other things, Ban Ki-moon said the following:

In recent years, more and more countries have taken measures to criminalize HIV transmission. Theoretically, this has been done to prevent the spread of the infection. In practice, the opposite has happened: the effectiveness of HIV prevention efforts has decreased as stigmatization has been reinforced. This type of measure sends a message that people living with HIV are a danger to society. Instead, we must encourage tolerance, compassion, and inclusion.

Just as my co-interpellator wants to express, it is pleasing to receive word that the government views positively an investigation of the duty of information in accordance with what the Public Health Agency recommends. I motioned in the autumn regarding the importance of developing a new HIV strategy, and it is a pleasing piece of news that this too is being prepared in the Government Offices. If it is possible to say anything about the timeline regarding that work, I would greatly appreciate it.

The speech at riksdagen.se, in Swedish (opens in a new tab)

Anna Wallentheim (S)

Madam Speaker! Thank you, Minister, for the answer! We are grateful that the government is increasing support for civil society and for the Public Health Agency to ensure that the stigma surrounding HIV is lifted and, hopefully, removed.

But it is also a bit sad that the government, on the one hand, gives to civil society and argues that it is important to educate people in this to ensure that people do not have to experience the discrimination they experience, and on the other hand, takes away money from folkbildningen (adult education). I believe that folkbildningen could be an immensely important support for getting children, young people, and adults to talk about sex and cohabitation, HIV, and so on. It is clear that I see that this could have been done in other ways as well. Even though HIV and AIDS are rarely discussed today and do not affect so many people's lives, it is important that we continue the work of finding effective ways to prevent both spread and stigmatization.

It is difficult to mention an exact figure, just as the minister is pointing out, because people do not dare to get tested out of fear. Just as my co-interpellator has mentioned, there are people who feel that they do not even dare to get tested because they do not want to have it in black and white that they have the disease, which could lead to a stigma.

We know today that HIV can be transmitted in three ways: through injection tools, via sexual contact, and in connection with pregnancy. However, we also know that there is almost no risk at all for someone being treated for HIV to transmit the infection, even if a condom is not used. This, which the research has concluded, was also the reason why we changed the legislation so that doctors can actually say that information is not required if one has well-treated HIV.

Instead of having requirements for a duty to inform, we should focus on the preventive work. We should talk to even more children and young people about the fact that everyone has a responsibility at six, and that it should not only be the one carrying a disease who has the task of informing.

One of the biggest challenges for effective prevention work is the prejudices and negative attitudes that exist and that people with HIV experience and mention multiple times. Discrimination and stigmatization are problems that, unfortunately, are experienced not only in private life but also within healthcare. This is something that we must carry with us.

Unfortunately, too many countries have laws that restrict the civil rights and liberties of people with HIV and oppose preventive measures. In some countries, it is even taken so far that there are laws regulating how people with HIV are allowed to move geographically. In Sweden, we have, among other things, through the duty to inform, regulations and applications that reinforce some of these prejudices and restrict some civil rights and liberties for people with HIV.

I think it is peculiar that in Sweden in 2024, one can be sentenced to imprisonment for voluntary and mutually unprotected sex that does not even lead to a person contracting HIV. I consider this to be completely unreasonable, and I hope that both the government and the minister see these parts as unreasonable and want to include them in the investigation. It is important to reflect on the fact that we need to change such provisions to ensure that the legislation does not contribute to more prejudices and restrictions in life.

I believe that this is something that could actually be fast-tracked. The Minister has the Riksdag behind them. There is an incredible amount of good knowledge within the Public Health Agency and research regarding HIV that would make it possible to fast-track this and place it on the Riksdag's table. Once again, I therefore want to point out that I hope we can see this in the near future. I also want to once again highlight the importance of preventive work.

The speech at riksdagen.se, in Swedish (opens in a new tab)

Socialministern Jakob Forssmed (KD)

Madam Speaker! To begin with the end of Anna Wallentheim's contribution, I can state that we are now strengthening the preventive work. We are directing more resources to work with knowledge, counter stigma, spread information on how the legislation works, and in various ways strengthen knowledge on these issues.

Ulrika Westerlund gave very good international perspectives, but I would like to highlight that Sweden has fundamentally been successful in this work compared to almost every other country. In 2016, if I remember correctly, we were the first country to be able to state that we had achieved Unaids and WHO's 90-90-90 goal: that 90 percent of all those who had the infection would know about their infection, that 90 percent would receive treatment, and that 90 percent of these would have undetectable virus levels. Furthermore, we have for a long time had both free testing and free treatment.

I also dare to assert that we have, in any case, worked much better than many other countries with what Ban Ki-moon spoke about: tolerance and compassion. I think we really should take that to heart and continue to work with it, because it is truly successful.

Then we need to become better at reaching marginalized groups who have HIV in order to better be able to get more people to receive a well-adjusted treatment, which also with current legislation can lead to that one gets the duty of information lifted.

There is also a lot to be done within the framework of current legislation to improve the lives of people who have HIV. They should not have to suffer from the fact that those around them have a certain view of them. It is something one sees frightening examples of in the rest of the world, but naturally, that type of prejudice also exists in Sweden.

We see, as said, positively on looking further into the issue and reviewing such an investigation as has been proposed. Both the Riksdag and the Public Health Agency have wanted to see a review. Then we can return to the forms for this.

I can also state that the interpellants here in the chamber represent Miljöpartiet and Socialdemokraterna, two parties that sat in government for eight years before us and did not raise the obligation to provide information. One reason for that could be that the issue was not prioritized; it is difficult for me to answer that.

But these are also complicated issues with difficult trade-offs. The Communicable Diseases Act exists fundamentally for one reason, namely to prevent people from being affected by infectious diseases or diseases that can affect and change their lives in various ways. Then there are different arguments in that context. Not least Ulrika Westerlund but also Anna Wallentheim have highlighted arguments for abolishing the duty to provide information, and they undeniably possess their validity.

I think there are reasons to look further into this. We will have to return to the forms for that.

The speech at riksdagen.se, in Swedish (opens in a new tab)

Ulrika Westerlund (MP)

Madam Speaker! I absolutely think we should be happy about the successes we have been able to see in Sweden. I believe that they were partly dependent on us having our national strategy, and therefore it is important that we get a new national strategy in place so that we can continue our successful HIV prevention work.

I also do not think that Sweden is one of the world's most repressive states in this area. We received criticism from the UN at the time when we had this project within RFSL, RFSU and Hiv-Sverige, because back then we truly belonged to the world's most repressive countries regarding the prosecution of people living with HIV. We no longer do that, and we should naturally be happy about that. But we should also, of course, not compare ourselves with states that do not offer their citizens free testing and treatment and so on. We have a higher level of ambition, which I am sure we share from several different parties.

It is central that the HIV prevention work is not worsened by a lack of knowledge among the general public which, I would still argue, can be due to the existence of the duty to inform. It can lull people into a false sense of security and lead to more risk-taking behavior. It can also distract from the most central HIV prevention message: that everyone has an individual responsibility to protect themselves.

As early as 2011, a doctor working at Venhälsan at Södersjukhuset in Stockholm pointed out that the central question regarding the spread of infection today is not how individual HIV-positive individuals behave, but how we are to reach all those who do not get tested and who do not dare to be open about their illness due to the discrimination that affects HIV-positive people. It is this group that poses the main risk to themselves and others. That we have such difficulties reaching these people is partly a consequence of criminalization.

I appreciate various attempts to reach out with information and knowledge to the public. I believe, however, that the existence of the duty of information complicates these endeavors. I hope that this discussion has led to the government being able to address the issue. I am aware that the issue is sensitive, which I believe is a reason why previous governments have chosen not to raise it, partly depending on the ignorance that exists and that taking this measure could be interpreted as something other than HIV prevention measures.

The speech at riksdagen.se, in Swedish (opens in a new tab)

Anna Wallentheim (S)

Madam Speaker! Just like the previous interpellor, I am incredibly proud of the work that we in Sweden have nevertheless carried out in this area. We must be well aware that HIV-positive people in Sweden obviously live a significantly better life than many others do in other countries, and we should be proud of that.

Now, in my opinion, it is time to take the next step. The duty of disclosure creates difficulties for those who experience increased threats, hate, and violence as a result of the duty.

I want to highlight and thank Ulrika Westerlund from Miljöpartiet who drives these issues together with me. We have a good agreement and a broad representation in the Riksdag's LGBTQ+ network. We should be proud that we can continue this cross-cutting work. I want to point out once again to the minister that he can therefore feel secure when he submits a proposal; I hope that there is then a majority here in the chamber that will vote to abolish the duty of information.

Several organizations have worked on these issues. RFSL, RFSU, and Hiv-Sverige have developed proposals on how a piece of legislation could look. It is precisely the duty to inform that they want to remove. They view it positively that HIV should be included in the Communicable Diseases Act. It is important that people should be able to get tested and that it is free. But we need to ensure that people dare to go and get tested without it coming with other requirements. Together with lawyers, a proposal has therefore been developed for how the Communicable Diseases Act could look without the duty to inform regarding HIV during, for example, sexual contacts.

I want to conclude by reading a quote: "If the duty to inform can be removed, it would mean an important victory for everyone who believes in equal treatment of all citizens in Sweden. The duty to inform is ineffective, stigmatizing, and counteracts HIV prevention. When the duty to inform can be removed, it reflects what we already know about HIV today, that treated HIV cannot be transmitted during sex." This is a quote from Camilla Waltersson Grönvall from the time she was a member of Parliament. She is today the Minister for Social Services.

The Minister must therefore feel secure in knowing that he has the Riksdag and the government behind him.

The speech at riksdagen.se, in Swedish (opens in a new tab)

Socialministern Jakob Forssmed (KD)

Madam Speaker! I agree that I have the government behind me. That is also my opinion.

Thank you very much for the interpellation debate! Special thanks for the story behind this! It is important to remind us of what journey society has made in these issues over a long period. Many people have contributed in a positive way to reduce the stigma and increase the possibility of living. It concerns both research as well as medicine, healthcare, and civil society organizations. Knowledge has been increased and the conditions have been improved so that many today can still live a good life with HIV.

The question, as said, is not sensitive for me. I want to establish the best possible regulatory framework so that as many as possible can live good and great lives. But at the same time, we must in the best way reduce the risk that more people become infected with HIV.

Anna Wallentheim mentioned equal treatment in a quote. It has been a reason why the legislation looks the way it does. There has been a desire to treat infectious diseases equally in the legislation, in order to be able to change, with the help of relevant knowledge. This has been done, for example, when it concerns that the duty to inform can be waived in a well-adjusted treatment. We need to increase the knowledge of what possibilities exist within the framework of today's legislation. We must return to the forms for how we should look further at the issues and investigate the prerequisites for changing this, if there are special reasons for it.

The interpellations debate was hereby concluded.

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