Jane Parry: Why real name HIV testing won’t fly in China

jane_parry3Two interesting documents that came across my desk this week got me thinking about how different HIV-related human rights look depending on where you’re standing. The first was a press release from UNAIDS, UNDP, and the International Commission of Jurists about the first ever judicial dialogue about HIV, human rights, and the law. The second was a news story from the China Daily about legislation recently passed in Guangxi Zhuang autonomous region requiring real names to be used for HIV tests.

The authorities in Guangxi, including doctors charged with the task of treating people who are living with HIV, and keeping the epidemic under control, have sound reasons for wanting to use real name testing. They say it will reduce loss to follow-up and it will be easier to track people down and convince them to get treated. It will also contribute to better public health policymaking because the region will have a more accurate picture of its HIV epidemic.

No it won’t, AIDS NGOs say, because people won’t come forward for testing in the first place, never mind being lost to follow-up. Instead they will at best do home self-testing, which is not accurate, and could leave them with a positive test result and no clue what to do next.

It’s a typical example of how public health policy often serves the needs of the health system instead of the patients. One of the main reasons patients prefer anonymous testing is that they want to know their status but have no inclination to share that information. Once the information leaks out of the medical system, all too common in a society where individuals’ rights are routinely trampled on by the state, people living with HIV are subject to widespread stigma and discrimination.

A 2009 survey conducted by the China Stigma Index found that over 49% of people living with HIV interviewed had experienced discrimination related to their HIV status. Over three quarters said their family had suffered the same discrimination. Pregnant women living with HIV are routinely advised to terminate their pregnancies: 12% of the respondents reported being pressured into having an abortion. The children of 9% of respondents were forced to leave school regardless of their own HIV status. Discrimination by medical staff, teachers, and government officials was rampant.

So I think it’s great that eminent judges from the Asia Pacific region gathered to discuss what they can do to provide a supportive legal environment for people living with HIV and to protect those particularly vulnerable to being infected. The conversation has to start somewhere, and there were Mainland Chinese judges participating in this ground breaking event.

But for people on the receiving end of public policy about HIV, it will be a long while yet before the target of zero discrimination is reached. And until that time, the Guangxi authorities would do well to turn around in their minds the conundrum of how to combat HIV and look at it from the perspective of their patients. Until they can guarantee that those who test positive won’t feel the chill of stigma from the very same healthcare workers responsible for testing and treating them, and until their communities are educated out of shunning them, real name testing is still just a good idea in theory.

I declare that I have read and understood the BMJ Group policy on declaration of interests and I have no relevant interests to declare.

Jane Parry is a Hong Kong based public health and medical journalist and researcher.