About 4 months ago, Guangxi and Hunan provinces announced plans to require real-name testing for HIV, and the Ministry of Health expressed support stating it should be a national policy. Immediately there was a huge outcry from the China Association of People Living with HIV/AIDS, the China Gay Male Health Forum, and others.

A joint report from Asia Catalyst and Korekata AIDS Law Center calls on China to protect patient confidentiality, provide counseling, and end compulsory testing in order to encourage more people to get tested for HIV. Without these basic rights, Chinese government programs that aim to expand HIV testing will not succeed.

Every day, Dongjen’s outreach worker, Jingjing, visits massage parlors in Beijing’s Hutongs. Over the past year or two, she has slowly and carefully built relationships of trust with the “sisters”, as Chinese sex workers often call themselves. Jingjing explains what HIV is, how it’s transmitted and how it can be prevented, and urges the sisters to get tested. It’s not easy to sell them on this, because sex work, as you know, is illegal and can lead to re-education through labor and heavy fines. Plus there’s the terrible stigma relating to HIV and the fear of being totally ostracized. This makes testing a hard sell. But after talking to them for months, about once a week or so, Jingjing gets a few of these sex workers to reluctantly go to the Center for Disease Control (or CDC) and take the test.

Each CDC has its own testing policies – it’s different everywhere in the country. The Beijing CDC is unique in that they require you to show an ID to get your test results.

The sex workers don’t want to do this, so what they’ve worked out with the CDC is that Jingjing can show her ID and pick up the test results for them. Because the CDC knows and trusts Jingjing, and because the sex workers do too, this works. In this way, Jingjing has, one by one, gotten dozens of sex workers to take an HIV test.

As one sex worker told us, “Usually, I don’t go to hospitals or government-run health services. … Police and doctors are all the same to me. How do you know they are not working together? But Jingjing is my friend; I know she would never hurt me. And I know other sisters went with her to get tested. So I went too.”

We want to emphasize here the relationships of trust between: the government, the NGO, and the community, which are essential to any HIV testing program. Without that trust, the system fails.

We know this because in Beijing, last summer, an NGO that works with men who have sex with men ran a pilot project on real-name testing. Out of 351 men who came in, 128 walked out without taking the test when they learned they would have to use their real names.

In the more than two decades of fighting HIV/AIDS around the world, every country has made costly mistakes. Our hope is that China, having entered the fight against HIV/AIDS late, can learn from mistakes made by the rest of the world. We have learned the hard way that to get people to come forward and test for HIV, you have to protect their basic rights. You have to uphold three basic principles: confidentiality, counseling and informed consent.

But here’s what is happening in China:

First, breaches of confidentiality happen everywhere. Local CDC and health officials sometimes deliver test results to employers or family members, instead of to the person who took the test. Even when they don’t do that, in following up with someone who tests positive, CDC staff sometimes drive a car with a big CDC logo right up to the person’s home, and in that way everyone in the neighborhood finds out that person is living with HIV.

A positive HIV test, once it’s publicly known, can destroy your life. There’s little legal protection against discrimination. You can be fired from your job, evicted by your landlord, and your children can be kicked out of school. We know, from news reports last year, many hospitals around the country are refusing to treat people who are HIV-positive. And there’s little hope to be found if you take your case to court.

This is why CDCs and other testing sites have to get better at protecting confidentiality. Without it, there’s just no basis for trust.

Second, there is just not enough, and not good enough, pre and post-test counseling in China. Counseling is the way that you give people basic information and let people who take the test know that having HIV is not a death sentence. Through counseling, you can address people’s fears and misconceptions, help them begin to live with HIV, and let them know about the many support services and free treatment the government provides. Knowledge is power, and counseling is an essential way to build trust and prevent the spread of the virus.

Third, informed consent is still a radical new concept in much of China. For instance, compulsory drug treatment centers, and re-education-through-labor camps, that detain drug users and sex workers often still test detainees for HIV without their knowledge or consent. Patients who check into hospitals may also be tested for HIV without their knowledge or consent. These are grave violations of people’s basic rights, and again, they undermine the trust we need to get people to test voluntarily.

Basically, it all comes down to trust. That’s why we recommend expanding laws and regulations to protect confidentiality, and then – this part is key – training testing centers in how to uphold those laws, and holding them accountable if they don’t.

We need more and better pre- and post-test counseling to get people with HIV informed about how to live with HIV and what their options are for treatment.

We’ve mentioned two NGOs that do community-based testing, and this is an important new development. The government knows that they can’t always reach marginalized and criminalized communities, but grassroots NGOs can. China should expand community-based testing.

Finally, we have to end compulsory testing. Protecting patient rights will help us to build the trust to get drug users, sex workers, and men who have sex with men to come forward and get tested. Violating patient rights, forcing people to get tested, giving them no information or emotional support, and releasing their information to others – these practices drive people underground and away from the reach of testing and treatment programs. It’s that simple.