HIV Infection Reporting in Canada

HIV/AIDS Epi Updates

April 2003

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HIV Infection Reporting in Canada

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Introduction

The most recent Canadian HIV and AIDS surveillance report indicates that the total number of AIDS cases and positive HIV tests reported in Canada to June 30, 2002 are 18,336 and 51,470 respectively.¹ The positive HIV test results reported to the Centre for Infectious Disease Prevention and Control (CIDPC) are from only those who test positive for HIV through nominal, non-nominal or anonymous testing in the provinces and territories, and whose results are reported to CIDPC by their respective health authority or HIV testing laboratory.

This Epi Update provides the most up to date information available on HIV infection reporting in Canada. It describes the types of HIV testing available in each province and territory as well as the jurisdictions in Canada where HIV infection is notifiable.

A notifiable disease is one that is considered to be of such importance to public health that its occurrence is required to be reported to public health authorities. When HIV infection is notifiable it is required by law that it must be reported to the public health authority in the area in which the diagnosis was made.  As a notifiable disease must be reported, the two terms, notifiable and reportable, are used interchangeably in discussing HIV/AIDS reporting in Canada.

HIV Infection Becomes Notifiable Across Canada

• As of January 2003, HIV infection was legally notifiable in all provinces and territories except British Columbia; however, it is expected to become notifiable in British Columbia on May 1, 2003. Eight provinces and territories had HIV reporting legislation in place by the mid- to late-1980s. The remaining five will have instituted legislation between 1995 and 2003.

• In most testing situations, laboratories and physicians are responsible for reporting HIV infection, but this varies by province or territory.

• When HIV infection is notifiable, 'nominal/name-based' or 'non-nominal/ non-identifying' information about an individual who tests positive for HIV is forwarded to provincial or territorial public health officials.  This includes demographic data, such as the person's age and gender; risks associated with the transmission of HIV; and laboratory data, such as the date of the person's first positive HIV test.

• HIV infection is not legally notifiable at the national level yet notification to CIDPC is voluntarily undertaken.  All positive HIV test reports are provided non-nominally to CIDPC.

• HIV testing patterns within the general population, along with the profile of people being tested, are important for designing and targeting intervention programs², and for developing a context for HIV/AIDS surveillance data.

Three Types of HIV Testing Available in Canada

Canadians choosing to be tested for the presence of HIV infection may have three different testing options depending on the province or territory in which testing takes place:

1. Nominal/name-based HIV testing

• May be carried out at numerous locations, including clinics and the office of a health care provider.

• The person ordering the test knows the identity of the person being tested for HIV.

• The HIV test is ordered using the name of the person being tested.

• There is collection of patient information (such as age and gender, as well as city of residence, name of diagnosing health care provider, country of birth); information detailing the HIV-related risk factors of the person being tested; and laboratory data.  The amount of information collected is dependent upon the province/territory.

• If the HIV test result is positive, the person ordering the test is legally obligated to notify public health officials of the person's positive test in those jurisdictions where HIV is notifiable.

• The test result is recorded in the health care record of the person being tested.

2. Non-nominal/non-identifying HIV testing

Similar to Nominal/name-based testing on all points except:

• The HIV test is ordered using a code or the initials of a person being tested (not the full or partial name).

3. Anonymous testing:

• Usually available at specialized clinics, organized and supported by public health departments and by some health care providers.

• The person ordering the HIV test does not know the identity of the person being tested for HIV.

• The HIV test is carried out using a code. The person ordering the HIV test and laboratory carrying out the testing on the blood sample do not know to whom the code belongs.  Only the person being tested for HIV knows the unique, non-identifying code.

• Age, gender, HIV-related risk factors and ethnicity of the person being tested for HIV may be collected during anonymous testing depending on the province or territory in which the test is ordered or on the test site. 

• Test results are not recorded on the health care record of the person being tested.  It is only the person being tested who may subsequently decide to give their name and include the HIV test result in his or her record.

Information regarding where HIV infection is notifiable as well as the types of HIV testing services offered throughout Canada is summarized in Table 1.

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Table 1: HIV Testing and Legislation of HIV Reporting by Province/Territory

N = Nominal/Name-Based, NN = Non-Nominal/Non-Identifying, A = Anonymous, L = Lab, , P = Physician, RN = Nurse
¹ Refers to legislation governing the type of HIV infection reporting to provincial/territorial health officials and the year it came into effect.
² HIV infection is expected to become notifiable in British Columbia on May 1, 2003.
³ In Ontario and British Columbia, HIV positive data from Anonymous HIV Testing (AHT) are reported non-nominally at the provincial level.

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The Availability of Anonymous HIV Testing (AHT) May Increase Testing

• As anonymous testing offers the highest degree of confidentiality, it may encourage more people to come forward for HIV testing and counseling.³

• An evaluation study of AHT in Ontario suggested that AHT provides testing to a populations that are not otherwise accessing testing.⁴

• Several studies in the United States have shown that AHT programs encourage people to be tested for HIV, especially those at high-risk or who would not volunteer for testing under nominal/name-based or non-nominal/ non-identifying circumstances.^5,6,7

• In its first year of operation, AHT sites in Ontario tested approximately 5% of the total tested population, and most often served individuals at high risk of HIV infection, especially men who have sex with men.⁸

Information regarding the availability and reporting of anonymous HIV infection in Canada is summarized in Table 2.

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Table 2: Status of Anonymous HIV Testing (AHT) by Province/Territory

** AHT is available upon request, but are not the official guidelines for the province/territory.
¹ Refers to the availability of AHT in the respective province/territory, and the year in which AHT was implemented.
² Refers to whether or not positive HIV test data from AHT is reported to the Centre for Infectious Disease Prevention and Control, Health Canada.
³ If someone tests positive for HIV through AHT, that individual then becomes part of the nominal/name-based system, where counselling, follow-up care and HIV data reporting are all done nominally.

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Comment

As of May 1, 2003 HIV infection is expected to be legally notifiable in all provinces and territories, however, each of these has a different practice for reporting HIV infection. Legislation of HIV infection reporting in all Canadian provinces and territories may increase the number of tests received at CIDPC. A change to mandatory reporting of HIV infection in Alberta in 1998 resulted in a significant increase in HIV tests among both men and women.⁹ As a result, making HIV notifiable across Canada should allow for the collection of more complete epidemiological data as well as enable more accurate and timely monitoring of the HIV epidemic.

All provinces and territories in Canada offer at least one form of HIV testing: 1) nominal/name-based; 2) non-nominal/non-identifying; and/or 3) anonymous testing. At present, nominal/name-based and non-nominal/non-identifying HIV testing is widely available in Canada; however, anonymous HIV testing is available in only eight provinces. Increased availability and accessibility to different types of HIV testing may allow individuals to choose the testing and counselling environment in which they feel most comfortable, thereby encouraging more people to be tested and facilitating the targeting of intervention and treatment programs.¹⁰

For more information on HIV testing, please contact your provincial or territorial public health department.

References

1. Health Canada. HIV and AIDS in Canada: surveillance report to June 30, 2002. Division of HIV/AIDS Epidemiology and Surveillance, Centre for Infectious Disease Prevention and Control, Public Health Agency of Canada, Health Canada, November 2002.

2. Houston S, Archibald CP, Strike C, Sutherland D. Factors associated with HIV testing among Canadians: results of a population-based survey. International Journal of STD and AIDS 1998; 9:341-346.

3. Jürgens R, Palles M. HIV testing and confidentiality: a discussion paper. Pp. 52-69. Canadian HIV/AIDS Legal Network and the Canadian AIDS Society, 1997.

4. Anonymous HIV testing Evaluation: January 1992 to June 1993. AIDS Bureau, Ontario Ministry of Health, November 1994.

5. Keagles SM, Catania JA, Coates TJ et al. Many people who seek anonymous HIV-antibody testing would avoid it under other circumstances. AIDS 1990;4(6):585-588.

6. Hoxworth T, Hoffman R, Cohn D et al. Anonymous HIV testing: does it attract clients who would not seek confidential testing? AIDS and Public Policy Journal 1994;9(4):182-188.

7. Hertz-Picciotto I, Lee LW, Hoyo C. HIV test-seeking before and after the restriction of anonymous testing in North Carolina. American Journal of Public Health 1996;86(10):1446-1450.

8. Browne J, Major C, Galli R, et al. HIV anonymous testing-does it make a difference? (Abstract no. PO-C28-3249). IXth International Conference on AIDS. Berlin, 6-11 June, 1993;9(2):758.

9. Jayaraman GC, Preiksaitis JK, Larke B. Mandatory reporting of HIV infection to public health authorities and opt-out prenatal screening for HIV in Alberta: Effect on testing rates. CMAJ (in press).

10. Hong BA, Berger SG. Characteristics of individuals using different HIV/AIDS counseling and testing programs. AIDS 1994;8:259-262.

For more information please contact:

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Health Canada

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