The HIV Registry Data Leak – Time for Change to reduce stigma

First Published Jan 31, 2019, 9:00 PM SGT
Roy Chan – For The Straits Times

The HIV Registry data leak has led to a review of security measures and efforts to
reduce the fallout on patients. It is also an opportune time to reflect on the bigger
picture of HIV in Singapore, specifically the high level of HIV-related stigma and
discrimination in this country.

On Monday, the Ministry of Health that more than 14,200 people with HIV (human immunodeficiency virus) had their confidential information, including their contact details and medical information, stolen and leaked online by the male American partner of a Singaporean male doctor who used to work in MOH. The leaked records include those of 5,400 Singaporeans diagnosed with HIV up to January 2013, and 8,800 foreigners diagnosed up to December 2011.
Since then, the community of people living with HIV (PLHIV) have been anxious and alarmed over the disclosure of their medical condition.

Medical records are private and confidential; however the disclosure of one’s HIV positive status is much more damaging. It can result in loss of employment, education, insurance, ostracisation by family, friends and society. It is incredible that over 30 years since the start of the epidemic, society continues to treat PLHIV with suspicion.

Biomedical advances in HIV have turned it from a fatal disease to an eminently treatable condition. Earlier treatment means better prognosis. PLHIV on optimum care can expect to live as long as persons without HIV infection. With treatment, persons usually rapidly achieve undetectable viral loads, to a level so low, they can no longer transmit the disease to sexual partners.

In Singapore, we have been relatively successful putting patients on treatment, but getting at-risk persons to get tested has been difficult. 

Over 50% of HIV-infected persons are still diagnosed in late stages. Stigma and discrimination remain key drivers of late diagnosis. For decades, healthcare and advocacy communities and agencies have ceaselessly worked to build trust and confidence in the healthcare system, with some success. Alas, this may have been undone by this data leak.

We can address HIV-related stigma by asking these questions. Why do we still perceive HIV infection as a reflection of a person’s moral character?

Should our policies be reviewed in an evidence-based manner to ensure vulnerable members of society are protected?

Are HIV laws helping, or do they have the opposite effect of increasing stigma and discrimination?

Let’s examine the main laws that impact HIV infection.

Criminalisation of HIV Transmission and Non-Disclosure
The Infectious Diseases Act (IDA) requires PLHIV to inform their sexual partner(s) of their infection and their partner(s) to voluntarily accept that risk. PLHIV can be charged if they do not inform their partners, it does not matter if they are on treatment or if condoms were used.

Criminalisation of HIV risk behaviour does not prevent the spread of HIV; instead it undermines current scientific knowledge about the disease and feeds stigma and discrimination.

Fear of criminal prosecution discourages testing, getting on treatment or disclosing HIV status. We should adopt the internationally recognised guideline that criminalisation should be limited to cases where there is intentional and malicious transmission of the HIV virus.

Travel and Employment Restrictions
According to the Immigration Act, any HIV infected non-citizen is a prohibited immigrant and cannot enter Singapore without a valid pass. This is another law that reinforces the notion that HIV is incurable and PLHIV are disease-spreading criminals. There is no good public health reason for this law to remain.

Foreign PLHIV who are on treatment and gainfully employed will contribute to Singapore society. They are not infectious and are not health risks, they do not impose on the public healthcare system and cannot access benefits meant for locals.

It is preferable to have someone whose HIV status is known and successful treated, than someone who is undiagnosed, unaware, frightened and potentially infectious.

Worldwide, more developed countries are doing away with such a prohibition against PLHIV.

Mandatory notification of HIV infection
Under the IDA, HIV-infected persons must be notified to the HIV Registry. Mandatory notification is the greatest deterrent of HIV testing and treatment in Singapore. Now is a good time to review the nature and function of the HIV Registry, which is at the centre of this leak.

Demographic information can be anonymised so it does not include naming people, and this should be sufficient to monitor the epidemic. Accurate counting of notifications can be ensured by creative numbering, without the need to include names.

This will go a long way to rebuilding trust.

Anti-HIV Discrimination Law
Anti-HIV discrimination laws have been in place not only in developed Western countries, but also in many Asian nations. These laws change mindsets and help to stop prejudice and stigma. It has been argued that there are no such laws for other medical conditions, therefore HIV should be treated the same way. But this data leak saga demonstrates that HIV is unlike any other medical condition.

Until we can honestly say that there is no significant HIV-related stigma and discrimination, anti-HIV discrimination laws should be on the table in Singapore.

I believe these structural changes must be made if we are serious about de-stigmatising HIV and ending HIV in Singapore. Carrying on as we have done in the past won’t get us there.

Roy Chan is former Director of the National Skin Centre and Founding President of Action for AIDS