The HIV Watchers


The long-anticipated draft of a bill that seeks to alter the way New York handles the medical records of people with HIV/AIDS and to simplify the process health care providers must follow before testing for HIV is being met with outspoken resistance from many of the city’s AIDS activists and service providers.

Frustrated with what they view as the Department of Health’s focus on what they characterize as surveillance rather than urgent treatment concerns, about 40 activists from the New York Civil Liberties Union, the New York AIDS Coalition, Gay Men’s Health Crisis, and other advocacy groups marched out of an auditorium at Manhattan’s Fashion Institute of Technology, chanting, “Our bodies, our lives, train the doctors, nix the spies,” during Department of Health commissioner Thomas Frieden’s closing remarks at the city’s fourth community forum on the draft bill.

“Nix the spies” was a reference to one of the most contentious proposed changes to the state’s public-health law. As it stands, health care providers are required to report the names of people with an HIV/AIDS diagnosis to the health department, along with medical data such as patients’ current viral load. Frieden would like to take that section of the law a step further with an amendment that would require health care workers to provide additional information to the health department on request, including patient contact information.

The other controversial change would eliminate mandatory pre-test counseling, which, in New York, includes a signed consent form that also enumerates the benefits of getting tested and the legal protections available to fight possible discrimination. Every blood sample sent to a lab must be accompanied by this form, and medical professionals call the paperwork burdensome. If Frieden’s bill becomes law, informed oral consent would be enough to permit testing.

The health department’s reasoning is that while many New Yorkers with HIV/AIDS are receiving adequate treatment, about 30 percent are not, and they usually fall into one of two categories: those who know they are sick but have dropped out of treatment, and those who have no idea they are at risk to begin with and would never think to get tested.

Dr. Scott Kellerman, the health department’s assistant commissioner for HIV/AIDS services, says those in the first category have not usually made a conscious choice to drop out—they just slip through the cracks because they “have a lot going on in their lives, issues that get in the way of treatment.” Problems like unstable housing and mental-health issues are among the things that keep people from sticking to their programs, and doctors and caseworkers don’t often have the resources to locate people who stop showing up. The health department could help, particularly, he says, when it comes to patients whose disease has progressed, as indicated by high viral loads and low CD4s, and who haven’t seen their doctor in a year. “Right now we have massive amounts of data, but we’re not allowed to do anything with it. We can’t talk with their doctor or their caseworker.”

When it comes to the estimated 20 percent of infected New Yorkers who don’t know they have the virus, Frieden says his broad goal is to destigmatize HIV testing by making it a routine part of standard medical care. Streamlining the administrative process is a small step toward this end, and he says he’d like to leave it up to clinics and hospitals to set their own policies as to whether or not to require written consent and counseling. If the law is changed, health care providers could conceivably perform more tests in less time, and more people would come to see getting tested as no big deal.

Everyone may not need to get counseled every time he or she is tested, and some advocates agree that it makes sense to let hospitals and clinics set their own policies. Still, there’s something unsettling about the thought of health department officials dropping by your house to find out why you haven’t been taking your meds.

At a recent forum, Frieden did little to reassure a highly skeptical audience. “This is all about government surveillance, not providing services,” shouted Michelle O’Brien from GMHC-sponsored Community Health Now! after Frieden had made statements like “We would only get involved if your doctor couldn’t find you and it looked like you could be so sick you’d die.”

Activists like Terri Smith-Caronia of Housing Works says her organization would like to see the proposed legislation completely dropped. Kacie Winsor of the New York AIDS Coalition told the Voice that although her organization agrees with some of Frieden’s points, some members get the feeling that the health department no longer regards HIV/AIDS as “a gay white male disease,” and therefore confidentiality is no longer as important.

Winsor adds, “What about undocumented populations who do not want government officials knocking on their doors, and what about people’s rights to refuse care? This legislation will negatively affect people, and our position is that it be taken off the table. He should have engaged us from the beginning, not drawn this up with lawyers in a room somewhere and then staged these community forums as window dressing. There needs to be an honest partnership. Let us all sit down and figure out the best ways to reach these goals.”

At any rate, community-based HIV/AIDS service providers think they are doing a pretty good job caring for patients without the government’s help. Moreover, they resent Frieden’s recent cuts in funding to neighborhood- based programs in the outer boroughs, and treatment community veterans are suspicious of his motives. At the recent forum, one audience member expressed fear of a slippery slope. “One day you’ll have the HIV people on the Internet, just like you have the criminals now,” he said, identifying himself as a person living with HIV. Another activist remarked—to wild applause—that while many community-based organizations have volunteers willing to search for prostitutes and drug users and who are capable of persuading these patients to get back into treatment, it is hard to imagine officials like Frieden doing the same.