Submission to Health Select Committee regarding Health (Protection) Amendment Bill

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1 Submission to Health Select Committee regarding Health (Protection) Amendment Bill A/Prof Nigel Dickson Director, AIDS Epidemiology Group, Department of Preventive and Social Medicine, University of Otago . Tel Introduction I am the Director of the AIDS Epidemiology Group (AEG). Since 1989, the AEG has been contracted by the Ministry of Health to undertake epidemiological surveillance of AIDS and HIV infection in New Zealand. As the Group has a major interest in data on new diagnoses of HIV, this submission relates to the aspects of the Bill impacting on this. Submission The AEG supports the proposal that Human Immunodeficiency Virus (HIV) infection being made a notifiable condition While agreeing that a notification of HIV should not include the infected person s name, address or place of work, the AEG believes that it should include the National Heath Index (NHI) number whenever possible. o We also believe that notification of AIDS that is currently made using a code should be also made with the NHI number Background and Rationale Epidemiological Surveillance Epidemiological surveillance is the the ongoing, systematic collection, analysis, interpretation, and dissemination of data regarding a health- related event for use in public health action to reduce morbidity and mortality and to improve health. 1 The components are shown in Figure 1. Data collection Analysis Action Interpretation Figure 1 Stages of epidemiological surveillance 1

2 HIV Surveillance A cornerstone of epidemiological surveillance of the HIV/AIDS epidemic in New Zealand is the collection of information on all cases of diagnosed HIV as recommended by UNAIDS. 2 Information on people diagnosed with HIV by an antibody test has been available since the AEG since started epidemiological surveillance in This has been undertaken via the two laboratories that perform confirmatory Western blot (WB) antibody testing. Initially this information was limited to the age, gender and likely means of infection of the infected person when provided to these laboratories. From 1996, this - when not provided - and further information has been sought from the testing clinician, including ethnicity, place of infection etc. From 2002, this information has been augmented by that from people having their first viral load (VL) test, a laboratory test used to monitor circulating HIV, who had not been recorded by the AEG as having had a positive WB test. This was originally introduced to obtain information on people diagnosed overseas, however in recent years the VL has on occasions been used to diagnose HIV without an antibody test. The data collected have allowed monitoring of the key epidemiological information of people diagnosed with HIV in New Zealand as shown in the attached AIDS New Zealand. The data have always been collected un- named, but with what is now refered to as the AIDS code, based on the initials, gender and date of birth of the affected individual (mine would be DINM170351). While not truly anonymous or unlinkable to individuals, it has been used to help maintain the confidentiality of the individuals whose data are in the surveillance system. Information on people with HIV at diagnosis Information has been obtained on over 90% of people diagnosed. When the diagnosis is made at infectious disease units and sexual health clinics information is generally easy to obtain as the staff there are aware of the code. However many diagnoses are made in general practice where the health care professionals tend not to be aware of the code, the use of which sometimes makes it harder for them to find the patients, and the response rate from this source is lower. Subsequent information on people with HIV The benefit of HIV antiretroviral treatment (ART) is not only for the individual but also for public health control. The latter is because a fully suppressed VL achieved through treatment renders people less infectious, hence a high proportion of people with HIV on effective ART will limit further spread through the population. This is refered to as treatment as prevention. Internationally there is appreciation of the importance of monitoring what is called the cascade of care (Table 1): Being diagnosed, refered to specialist care, remaining in specialist care, being on ART, and having a fully suppressed VL. While 2

3 the effect of treatment as prevention is dependent in the proportion at the final stage of the cascade, knowing the proportion at each of the stages shows where improvements should be focused. Table 1 Cascade of care (Gardner et al. 2011) The cascade was originally explored in the US in 2010 where it was estimated that disappointingly - of those diagnosed only half were retained in care, 30% on ART and 24% having undetectable VL (Figure 1). 3 Other countries have found a more positive cascade with higher proportions in these categories. 4 Figure 2 Spectrum of engagement in care in the US based, (Gardner et al. 2011) Understanding the cascade has proved a valuable indication of the care of people diagnosed with HIV from a population perspective, and allows identification areas of possible weaknesses, for example the large number are being lost from specialist care in the US suggests an area where improvement is needed. In 2013, the AEG undertook a project that was aimed to explore this cascade for people diagnosed in New Zealand in the 8- year period This was done with help from the analytical services of the Ministry of Health who were provided with the AIDS codes and explored national health databases to see if people were receiving ART. In addition, information was sought on treatment and outcome from clinicians involved in specialist HIV care. As well as being time consuming and resource intensive, a major problem was that for 11% of those diagnosed in that period the current status could not be determined form any of the sources used. 3

4 This resulted in uncertainty in the true proportion diagnosed in this period who had fully suppressed VL, which was calculated as being between 63% or 53% dependent on the current status of these people for whom no information could be obtained. In New Zealand the National Health Index (NHI) is a collection of information used to help with the planning, coordination and provision of health and disability support services. Only health agencies that are involved in providing health services can access and use the information on the NHI, which is governed by the Health Information Privacy Code. The NHI number is the unique number assigned to each person using health and disability support services and is used in most encounters with the health system, such as hospital discharges and pharmaceutical dispensing. The NHI number is not currently collected on people diagnosed HIV. However if it were available, while the AEG does not have and would not seek - access to the index itself, it would allow it to request other agencies, such as the analytical services of the Ministry of Health, the health use (hospital discharge, pharmaceutical dispensing of ART) of people notified. It would also make it easier for clinicians to provide information on the results of laboratory testing of people notified with HIV. This would potentially allow the ongoing monitoring of the care of people diagnosed with HIV, information that could be used generally to improve care and control. The current AIDS code is an adjunct to confidentially but not truly anonymous. It could potentially be used be identify a number of individuals who the code might be derived from (i.e. have the same sex, initial and data of birth) if a database of all people in New Zealand that includes these was searched. To prevent inappropriate access to the database held by the AEG, it is maintained with recognition of the importance of confidentiality. The major features being: The Microsoft Access database files held by the AEG are stored within a virtual encrypted disk (using the software True Crypt). A strong password is used to protect the encrypted (AES, 256- bit key) disk. Cloud services are not used by the AEG. Access is limited to the Assistant Research Fellow and Director of the AEG. The current AIDS code is similar to the NHI number with respect to the confidentially it provides, as the NHI number could be used to identify individual by people with NHI access. However, the AEG does not know of any experiences of people with HIV infection being identified on account of the information being provided for epidemiological surveillance with the AIDS code. The suggestion has been made that notification with the NHI will decrease the rate of HIV testing. This has not been directly studied, however a recent research report examined the effect of New York s HIV Reporting and Partner Notification law, which required name- based reporting, on HIV testing levels among high- risk individuals. 5 No negative impact on testing rates was found (Figure 2), and the study concluded 4

5 HIV reporting has permitted improved monitoring of New York s HIV/AIDS epidemic. This benefit has not been offset by decreases in HIV testing behavior, including willingness to test among those at high risk of acquiring HIV. Figure 3 Trends in the monthly number of HIV tests at study sites in New York from 1998 t The vertical line indicates the date of implementation of the HIV Reporting and Partner Notification law there Overall we believe that there would be no significant increase in the risk of breaches in confidentiality, nor drop in HIV testing if the NHI were provided to the AEG with notifications of HIV. Conclusion While voluntary, the system for obtaining information on people diagnosed with HIV is working well, and provides valuable information for policy development. To make HIV notifiable would ensure the continuation of this. The provision of the NHI on people at HIV diagnosis would make it easier for the clinicians to provide the information requested, that would likely result in a higher response rate and more complete and accurate information. Importantly it would allow for the efficient collection of follow up information on people notified with HIV, that will help monitor individual and population benefits of treatment, and identify general areas where this could be improved. 5

6 References 1 Teutsch SM, Thacker SB. Planning a public health surveillance system. Epidemiological Bulletin: Pan American Health Organization 1995;16:1-6 2 Second Generation Surveillance for HIV/AIDS. 3 Gardner, E. M., McLees, M. P., Steiner, J. F., del Rio, C., & Burman, W. J. (2011). The spectrum of engagement in HIV care and its relevance to test- and- treat strategies for prevention of HIV infection. Clinical infectious diseases, 52(6), Raymond A et al. Journal of the International AIDS Society 2014, 17(Suppl 3): Tesoriero, J. M., Battles, H. B., Heavner, K., Leung, S. Y. J., Nemeth, C., Pulver, W., & Birkhead, G. S. (2008). The effect of name- based reporting and partner notification on HIV testing in New York State. American journal of public health, 98(4),

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