Sciensano is in charge of the epidemiological surveillance of HIV/AIDS in Belgium. To this end, since 1985 notifications of new HIV diagnoses and AIDS cases are collected. Since 2006, Sciensano also collects data on persons living with HIV in medical follow-up: this is the Belgian HIV Cohort. In 2018, the monitoring of Post- and Pre-Exposure Prophylaxis for HIV has been included in the HIV surveillance.
Based on the HIV/AIDS surveillance, it is possible to monitor trends in the number of people diagnosed with HIV and the number of people living with HIV in medical follow-up, and to identify certain sociodemographic factors associated with the risk of HIV infection or of an adverse clinical outcome. This information helps health authorities and HIV stakeholders to decide on evidence-based HIV prevention and care strategies and to identify target groups for tailored interventions.
The epidemiological surveillance of HIV/AIDS is based on several data collections and sources:
Persons with an HIV diagnosis
The data on persons with a new HIV diagnose in Belgium are based on the registration of HIV diagnoses by the AIDS Reference Laboratories.
In Belgium, there are seven AIDS Reference Laboratories. One of their tasks is to perform confirmatory testing of all sera reactive in an HIV screening test. Since only these seven laboratories are competent for these confirmatory tests, this registration gives a complete picture of the total number of diagnosed HIV-positive persons in Belgium.
AIDS Reference Laboratories also collect and report basic epidemiological data on the persons diagnosed with HIV. This brings insight in the demographic characteristics of people living with HIV and risk factors for infection.
People living with HIV in medical care: HIV cohort
Since the use of antiretroviral treatment in 1996, the life expectancy of people living with HIV has improved significantly and the population of persons living with HIV in medical follow-up has steadily increased. To describe and study this population, data are collected using a method similar to that of the epidemiological surveillance system of new HIV diagnoses.
The surveillance of HIV patients in medical follow-up in Belgium is based, on the one hand, on the registration of viral load measurements by the AIDS Reference Laboratories. On the other hand, there is the Belgian HIV cohort, an observational, longitudinal study of people living with HIV in medical follow-up at one of the 12 HIV Reference Centres, covering more than 80% of the people living with HIV in medical follow-up in Belgium. These two sources provide a complete picture of the number, profile and evolution of people living with HIV in medical follow-up in Belgium.
New-borns from mothers living with HIV
Children born from mothers living with HIV are monitored by the AIDS reference laboratories, from birth to 18 months of age, to confirm or exclude HIV infection. Since 2015, viro-immunological data on those new-borns are reported by the AIDS Reference Laboratories. This allows the monitoring of mother-to-child transmission in Belgium.
Persons using preventive HIV treatments
i. Pre-exposure prophylaxis
Since June 1st 2017, Pre-Exposure Prophylaxis (PrEP), the HIV prevention pill, has been available in Belgium and is reimbursed for persons at increased risk of sexually acquired HIV infection, as defined by national eligibility criteria. PrEP can be obtained at HIV Reference Centres.
The PrEP surveillance is based on two different sources.
Reimbursement data regarding purchased Truvada© and emtricitabine/tenofovir as PrEP for HIV in a Belgian pharmacy are available in the national Pharmanet database. Sciensano receives an annual extraction from that Pharmanet database in the format of an aggregated dataset including basic demographics and number of PrEP pills purchased per year.
Aggregated data are also collected from the 12 HIV Reference Centres in order to ascertain the HIV risk profile of the PrEP users.
ii. Post-exposure prophylaxis
Post-exposure prophylaxis (PEP) is a short-term antiretroviral treatment to reduce the risk of HIV infection in a person who may have been exposed to HIV. PEP can be prescribed in cases of occupational exposure (prick accident), as well as in cases of exposure through unprotected sex or sharing needles (injecting drug users). PEP can be obtained in a hospital with an HIV Reference Centre.
The PEP surveillance is based on the registration by HIV Reference Centres of the PEP treatments eligible for reimbursement.
Data protection notice concerning the Belgian HIV Surveillance
Sciensano — public institution with registered office at rue Juliette Wytsman 14, B-1050 Elsene, is responsible for the processing of the HIV surveillance data. The processing of the data is based on the grounds of public interest as provided for in art. 6.1 (e) of the General Data Protection Regulation, GDPR and in particular for data concerning health, for reasons of public interest in the areas of public health as provided for in art. 9.2 (i) GDPR.
As legally required for any collection of personal health-related data in Belgium, the HIV surveillance data collections were approved by the Information Security Committee (Chamber Social Security and Health) . Their deliberation covers the framework in which the data can be processed, the measures to ensure confidentiality of data, the list of variables collected, and the secure transfer of data.
The data are collected from the Aids Reference Laboratories and the HIV Reference Centres. The data processing is technically supported by the healthdata.be-platform.
Persons involved in the HIV Surveillance to whom this notice concerns:
- Newly diagnosed people living with HIV
- People living with HIV in medical follow-up
- New-borns born from mothers living with HIV
- Users of Post Exposure Prophylaxis (PEP) treatment
- Physicians who diagnosed HIV
- Physicians associated to HIV Reference Centres
Patient and physician information
Which categories of personal data does Sciensano collect for the HIV surveillance?
- Newly diagnosed people living with HIV: date of diagnosis, clinical and laboratory data on the infection at the time of diagnosis, demographical data (sex, age, nationality, postal code, country of birth), probable mode and country of infection, reason for testing.
- People living with HIV in medical follow-up: viral load measures of all people living with HIV, selected biological, immunological, clinical, treatment and death data of people living with HIV in care in the HIV Reference Centres.
- New-borns born from mothers living with HIV: viro-immunological data.
- PEP users: date of PEP treatment, demographical data (sex, age, nationality, country of birth), HIV risk exposure, HIV test result after PEP treatment.
- Physicians who diagnosed HIV and physicians associated to HIV Reference Centres: RIZIV/INAMI number.
Sciensano employees have no access to patients’ identity (name, address, contact details). Only the data providers (laboratory of diagnosis and treating physician) know the full identity data. During the data transfer from the data providers to Sciensano, the national security number or other ID code used in the Aids Reference Laboratory or HIV Reference Centre is pseudonymised. This means these personal data are encoded in a way that ensures that patients can never be directly identified. This pseudonymisation is done by a so called Trusted Third Party, namely EHealth.
Find more detailed information regarding the data collected.
For which purpose is the HIV surveillance data used?
The processing of HIV data is done to fulfil a public health task of general interest. The collection, compilation and analysis of HIV data should make it possible to expand knowledge of the Belgian HIV epidemic. On this basis, the competent authorities will have accurate and up-to-date information to guide the management of HIV, taking into account epidemiological trends and the most recent evolutions.
Who has access to these data?
- Sciensano employees involved in the HIV surveillance have access to the pseudonymized dataset.
- Under Decision No 1082/2013/EU of the European Parliament and of the Council of October 22nd 2013 , Sciensano is required to report an annual pseudonymized dataset of HIV surveillance variables to the European Centre for Disease Prevention and Control (ECDC).The data transfer is done through the European Surveillance System (TESSy) .
- Reports with the results of the surveillance will be made public and will be shared with partners and federal and regional ministries of public health. These reports will only contain aggregated data (in tables).
- Sciensano may grant permission to other HIV scientists to use specific data for research purposes, if they meet strict legal and ethical requirements. Data that is shared only contains the necessary data for the relevant research. This data is securely shared.
How long will the data be stored?
The pseudonymized data will be stored for 30 years after the patient’s death, in accordance with the approval of the Information Security Committee (Chamber Social Security and Health).
What rights do I have?
In carrying out its mission of HIV surveillance, Sciensano complies with the General Data Protection Regulation. Within the limits of that regulation, you have the right to:
- Consult your data
- Request a rectification of your data
- Request a restriction on the use of your data
- Oppose the processing of your data
Sciensano will only be able to respond to such requests if it is possible to link the data to the requesting individual. Since the national HIV surveillance data is stored in a pseudonymized form, it is not possible to know which data belongs to which person and Sciensano would therefore need additional information from the applicant. However, you can consult the information in your medical record and have it rectified by the treating physician.
For reasons of public interest, the General Data Protection Regulation provides exceptions to the right to request restriction of use and opposition to the processing of data.
For more information regarding the processing of your data, please contact the Data protection Officer of Sciensano: firstname.lastname@example.org
The supervising national authority may be contacted for questions or complaints at:
Drukpersstraat 35, 1000 Brussel