Opinion: Every New Yorker deserves to know their HIV status

The state must update its HIV testing law to match current CDC guidance and make it easier for doctors to order HIV tests for patients.

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“Know your HIV status.” It’s a powerful public health message that is key to protecting individual health, ending our New York HIV epidemic and addressing the persistent and unacceptable disparities in HIV’s impact on New Yorkers marginalized in our health system.

When patients are informed of their HIV status, thanks to modern antiretroviral therapy, they can live long, healthy lives. But early detection is key to reaping these health benefits. Testing is the essential gateway to New York’s excellent and universally available HIV treatment and prevention options. 

Moreover, antiretroviral treatment also reduces the amount of HIV in the bloodstream to the point that it is virtually undetectable. Making the virus undetectable is the gold standard of HIV treatment, and it not only benefits an individual’s health, but the public health as well, because when the virus is suppressed to this extent, there is effectively no risk of transmitting HIV to others. This prevents future infections, saves lives and caps health care expenses; the lifetime cost savings for avoiding just one HIV infection has been estimated to be over $400,000.

Yet far too many New Yorkers still don’t know their HIV status, especially those who rely on emergency rooms as their sole point of contact with the health system. They are left behind because they are not offered HIV testing as part of routine care. It is simply unacceptable that 18% of New Yorkers newly diagnosed with HIV do not learn their status until they already have  AIDS, despite most patients having numerous interactions with the health system.

 A recently released New York State Department of Health analysis found that people diagnosed with HIV at inpatient facilities or emergency rooms were twice as likely to have a concurrent diagnosis of AIDS, likely due to their lack of access to health care. New York studies show that 30% to 60% of all people diagnosed with HIV have had one or more prior missed opportunities for testing, with one NYC hospital finding, on average, three earlier missed opportunities for diagnosis.

A significant barrier is New York’s current HIV testing law, which has not been updated to align with the Centers for Disease Control & Prevention’s 2006 guidance to include HIV testing in routine care, with notice of the test and the opportunity to opt out provided orally or in writing. In New York, HIV testing is voluntary, and anyone can decline the test. But our current law requires that health care providers provide patients with oral notification before providing an HIV test. Notably, New York is one of only two states (Nebraska being the other) that deviates from the CDC testing guidance.

 We can fix this under the HIV Testing Modernization Act (S.7809/A.8475). This legislation, sponsored by state Sen. Brad Hoylman-Sigal and Assembly Member Amy Paulin, would bring New York’s HIV testing regime in line with CDC guidance and best practices by expanding the methods for informing patients beyond oral notification to include notice given in writing, by prominently displayed signage, by electronic means or by other appropriate forms of communication. The bill, which passed the New York State Assembly unanimously earlier this year, would add patient protections by requiring notice by means readily accessible in multiple languages that explicitly states HIV testing can be refused. It would also require that patients be informed that pre-and post-exposure prophylaxis medications (known as PrEP and PEP) are available to protect against HIV infection.

According to the CDC, routine, opt-out screening has proven to be highly effective because it removes the stigma associated with HIV testing, fosters earlier diagnosis and treatment, reduces transmission and is cost-effective.

There was a time before HIV treatment when there was reason to fear learning your HIV status. Thankfully, those dark days are no longer. In New York, every person who tests positive has access to excellent HIV care. Since 2010, no person can be deported or have their immigration status affected by an HIV diagnosis. New York has strong HIV confidentiality protections and an extensive system of support in place for people with HIV.  

With these protections in place, it’s time to update our HIV testing law so every New Yorker knows their status and gets the treatment they need to live longer, healthier lives.