Should Your Full Name Be In A HIV Register?

Should Your Full Name Be In A HIV Register?

As reported in the Star Observer, the NSW Health Department Australia is looking to change the way that people who have recently had a positive HIV test have their information reported to the health department.

In the past a coding system was used to “de-identify” the person so if  a lay person was to access the data they would not be able to work out who the individuals are.

Changes are being made to change this so a person’s full name would be used in the register to make epidemiologist data collection an easier task.

Sadly many people living with HIV are already living with discrimination as a result of this infection. I have personally seen many patients who are too fearful to have HIV testing done for fear of their name being added to any sort of register.

HIV stigma is real. There are people genuinely fearful of loss of privacy of an already stigmatized diagnosis. Some people would rather not get tested if it means they won’t be put on a register.

Having a person’s full name on a government record is creating a barrier to people getting tested. Without testing in a safe and confidential manner we are not able to help people seek the highly effective treatments available for HIV.

If you are living in HIV I strongly urge you to talk with your local member about the importance of privacy in all medical data. Not just HIV.

I urge you to submit your thoughts via post or email here:

Health Protection NSW, NSW Ministry of Health
Locked Bag No. 961
North Sydney NSW 2059
Email: [email protected]

Yours in good health.

Dr George Forgan-Smith


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