Opinion: New Yorkers’ right to know when they’re tested for HIV is facing an unprecedented threat

CHLP's Amir Sadeghi and Positive Women's Network's Elder Antoinettea Etienne penned this op-ed for City & State New York in opposition to S7809, a bill being voted on in the New York State Senate that would amend provisions of New York’s HIV testing law and upend patients' rights by removing the informed consent requirement.

Read on City & State or below.

Opinion: New Yorkers’ right to know when they’re tested for HIV is facing an unprecedented threat

Current law requires doctors to verbally discuss HIV testing with patients before ordering a test. Lawmakers want to remove that requirement.

June 3, 2024

by Elder Antoinettea Etienne and Amir Sadeghi

HIV is a manageable disease today thanks to medical advances and shared understandings about how to connect people to lifesaving treatment. Among those understandings is the principle that we reach patients best when we center their dignity. This principle is important to people living with HIV, who are targets for stigma, discrimination and violence.

New York law guarantees you the right to all relevant information before medical diagnostic care. These protections reflect what should be common sense: we’re more likely to make informed decisions about our health and well-being if we are informed. So why are New York lawmakers and Gov. Kathy Hochul rushing to undermine your ability to decide when, if and how you’re tested for HIV?

The current legal requirement that New Yorkers must be directly, verbally notified before being tested for HIV is threatened by a proposal scheduled for a vote by the state Senate. Instead of protecting conversations between patients and their medical providers, lawmakers are seeking to allow any form of notice – from a sign on the wall to the fine print on a form – to count as consent to an HIV test. But many New Yorkers cannot read or speak English and may not feel confident expressing their language preference. Others have visual or auditory disabilities and cannot be notified by those written means. And we know virtually no one reads all the fine print on medical forms, especially during a medical emergency.

Taking conversations away from patients and their doctors will not benefit people living with HIV or save lives. In fact, research shows that nonconsensual testing discourages people from engaging in care. That’s because the cornerstone of HIV care is trust. The people most affected by HIV, including Black and Latinx New Yorkers and LGBTQ New Yorkers, experience racism and discrimination in accessing care, and those experiences fuel their mistrust of medical professionals. Medical mistrust that discourages people from connecting to care isn’t a “problem” to be solved by circumventing patients’ rights. Trust must be earned, and public health efforts to end the HIV epidemic are doomed without it.

HIV stigma is still one of the most persistent barriers to care, but stigma prevails because of the collateral legal consequences of an HIV diagnosis. A majority of states have HIV-specific criminal laws punishing people living with HIV, and the people most overrepresented in HIV arrests and prosecutions are women and Black and Latinx people. 

New York still has an archaic, stigmatizing law punishing anyone living with a sexually transmitted infection who has sex. Under New York Public Health Law 2307, people who use condoms, are virally suppressed and cannot transmit HIV, or who get consent from their sexual partner aren’t protected from prosecution. Even laws like reckless endangerment and aggravated assault have been used in New York to criminalize people living with HIV, including a case where someone was exposed to a bodily fluid that cannot transmit HIV: saliva. 

While New York does have a law protecting the confidentiality of HIV information, there are many exceptions to those protections, including in response to a court order. HIV medical information has been used against people in criminal prosecutions, which gives marginalized New Yorkers affected by HIV another reason to be fearful of being tested without their knowledge or consent.

If people are rightfully afraid of how an HIV diagnosis might lead to their arrest, it’s in our power to end the legacies of criminalization and racism that pose a threat to public health. We can start by repealing Public Health Law 2307, and by doing so, eliminating a harmful barrier confronting people living with HIV without breaching our right to decide when and how we’re tested. Ending stigma and state violence go hand-in-hand with making HIV testing and treatment more accessible and worthy of our trust. Testing some of the most vulnerable New Yorkers – including people who are undocumented or whose only means to access medical care is an emergency room – is bad policy.  

Nonconsensual HIV testing would also completely undercut efforts like the New York State Department of Health’s  HIV self-test giveaway campaign. Patients will only be aware of the opportunity to use a self-test kit in the privacy of their home if their providers speak to them about self-test kits first. This simply will not happen if their providers are not talking to them about HIV testing at all. Self-testing at home is an incredible resource available to ensure everyone can test for HIV on their own terms. We should be doing more to raise awareness about the different ways to access testing, not less. 

Learning an HIV diagnosis without knowing your blood was screened in the first place is not human-centered health policy. Lawmakers and Hochul must protect our freedom to decide when, if, and how we’re tested for HIV. That means rejecting S7809/A8475.

Elder Antionettea Etienne is the co-chair of the New York chapter of Positive Women’s Network-USA. Amir Sadeghi is the policy and advocacy manager with CHLP, an abolitionist legal and policy organization that envisions and works for a world where HIV and other stigmatized health conditions are no longer criminalized but met with compassion and the resources to thrive.