Abolish the obligation to disclose HIV status

The parliament has decided on a review of the obligation to disclose HIV status, hopefully leading to a removal of the obligation to disclose from the Communicable Diseases Act. If the obligation to disclose is removed, the legislation will finally respect the human rights of people living with HIV. People living with HIV would no longer have to inform their sex partners about their HIV status.

The abolishment of the obligation to disclose HIV status will be an important victory. RFSL has been criticizing the obligation to disclose HIV status since its implementation in 1985. We believe that it’s counterproductive, stigmatizing and counteracts HIV prevention. The obligation to disclose HIV status places all responsibility on the person knowing they are living with HIV, and forces them to disclose something that is irrelevant in order to not be seen as a criminal.

In Sweden, HIV is almost always transmitted by someone who is unaware of their HIV status and who therefore isn’t subject to the obligation to disclose. The abolishment of the obligation to disclose HIV status will mirror what we know about HIV today, that an undetectable viral load means no risk of transmission. When treated, HIV can’t be transmitted through sex.

What does the obligation to disclose HIV status mean?

The obligation to disclose HIV status places all responsibility on people who know that they are living with HIV. The obligation to disclose means that people who live with HIV have to inform their sex partners about their HIV-positive status before having sex, even when HIV can’t be transmitted.

In the report “Hiv, brott och straff” (RFSU, RFSL and Hiv-Sverige, 2011), you can read more about what the obligation to disclose HIV status has meant for people living with HIV (the report is in Swedish).

Why would we celebrate the abolishment of the obligation to disclose?

The obligation to disclose your HIV status has directly contributed to the stigmatisation of people living with HIV. When the obligation is abolished, people living with HIV will no longer be criminalised if they don’t inform their sex partners about their HIV-positive status. The obligation to disclose HIV status has meant that people living with HIV have had to reveal their HIV status, even though the virus can’t be transmitted.

To no longer risk being viewed as a criminal is a huge victory for everyone living with HIV.

The obligation to disclose HIV status shifts focus from the most important message in HIV prevention: that all parties in the sexual encounter are responsible for protecting themselves and their partners. Ever since HIV came to Sweden, RFSL has stressed this shared responsibility for safer sex between sex partners in order to prevent the transmission of HIV. The obligation to disclose HIV status puts all the responsibility on people knowing they are living with HIV.

HIV is most often transmitted by those who are unaware of their HIV-positive status. The obligation to disclose doesn’t apply to this group since they know nothing and therefore have nothing to disclose. The obligation to disclose HIV status is therefore counterproductive and contributes to the stigmatisation of people living with HIV who are aware of their status. The abolishment of the obligation to disclose means that people living with HIV no longer carry the full responsibility in preventing HIV from being transmitted.

Removing the obligation to disclose HIV status from the legislation means that it will be adapted to current scientific knowledge about HIV; that well-treated HIV can’t be transmitted through sex.

Read more about the Public Health Agency of Sweden’s recommendations in Smittsamhet vid behandlad hivinfektion (in Swedish, with summary in English, The Public Health Agency of Sweden, 2019)

But wait, isn’t the obligation to disclose already abolished?

For a few years now, physicians have been able to lift the obligation to disclose HIV status in individual cases, so that the patient no longer has to inform their sex partners about their HIV-positive status. However, the knowledge that the obligation can be lifted is not universal, neither among people living with HIV nor their physicians.

Read more in the Public Health Agency of Sweden’s report
Tillämpningen av smittskyddslagens förhållningsregler vid hivinfektion (in Swedish, summary in English, The Public Health Agency of Sweden, 2018)

RFSL’s suggestions for an amendment

RFSL works to promote a change in the Communicable Diseases Act. It is a good thing that both testing and treatment for HIV is free of charge, so we don’t want HIV to be entirely removed from the act. However, the act should be drafted so that HIV is excluded from regulations that are counter-productive and that stigmatise people living with HIV. To facilitate the work of decision-makers and officials, RFSL, along with RFSU and Hiv-Sverige and in collaboration with legal practitioners, has produced a suggestion for what a Communicable Diseases Act without the current obligation to disclose HIV status with regards to sexual contacts could look like (in Swedish).