There were nearly 7,000 people newly diagnosed with HIV in New York City during 2001. Over one-quarter of them already had AIDS when they tested positive, and, two years later, that proportion has jumped to 36 percent. Nearly half of the 4,900 AIDS diagnoses delivered during 2001 were received by people who tested positive that year. Why are so many people with HIV waiting so long to get tested? Why are so many people waiting until they are at risk of fatal illness to seek medical care?
The new numbers from the New York City Department of Health don't answer those questions, but the demographics are striking. Eighty-seven percent of people with a concurrent HIV and AIDS diagnosis in New York during 2001 were black or Hispanic. Concurrent is defined as AIDS diagnosed within 31 days of the HIV diagnosis -- roughly enough time for an under-200 CD4 cell count to come back from the lab. Most people with concurrent HIV and AIDS were in their 40s and 50s, although 11 percent were 29 or younger. That's 200 new twenty-somethings with AIDS.
The affluent Chelsea neighborhood of Manhattan claims the largest percentage of people living with HIV/AIDS (PLWHA) in New York (3.3%), yet it has one of the lowest death rates of PLWHAs in the city (15.9 per 1,000 PLWHAs). Meanwhile, in Harlem, where PLWHAs are about 2 percent of the population, the death rate is nearly 2.5 times higher (42 deaths per 1,000 PLWHA). Higher death rates are also reported in the Bronx and Brooklyn (38 and 36 deaths per 1,000 PLWHAs, respectively) compared to Manhattan and Queens (26 and 27 deaths per 1,000 PLWHAs, respectively).
What can't be told from these statistics, but can be inferred, is the role that access to medical care must play in whether someone tests positive before progressing to AIDS, or in how likely someone is to die from their HIV infection. A 1997 study by the Commonwealth Fund reported that no matter where they reside in New York City, people lacking medical insurance are far more likely than the insured to face barriers in gaining access to health care. "Citywide, they are two to three times more likely to go without needed medical care, to not see a physician, and to lack a regular doctor."
Private insurance comes along with a steady job. The best insurance buys the best care and belongs to people with the best jobs. Medicaid coverage can be good but is notoriously sporadic. Someone may be covered in January and cut loose by December if they have not jumped through the hoops of yearly certification. It's a system that seems designed to keep people from depending on it. Consequently, too many people in this city still head to the emergency room when their health needs attention. And too many people find out they have AIDS at the ER.
Twenty years into the epidemic, studies show that many doctors are still too squeamish to ask about HIV risk behaviors during routine exams, and too many still fail to offer testing. This neglect may be worse in immigrant communities where the topic of sex is sensitive or taboo. Why are AIDS death rates so high in lower Manhattan where Chinatown is? Stigma is the number one reason people are afraid to be tested in India and South Africa. Yet HIV stigma is alive in every New York borough.
Of course, none of this explains why 7,000 people tested positive in 2001. And the statistics don't begin to address the bleeding question of how many people actually became infected that year ... or this. What they do suggest is a continuing failure of the system. And things are only getting worse. With clinics closing, a retreat from science-based prevention, and shrinking state and city budgets, what will the 2003 numbers say? We've just been told that federal HIV/AIDS prevention and care dollars to New York are going to be cut by 12 percent. New York remains at the epicenter of the U.S. epidemic and the government's retreat from reality is compounding our disaster. Lack of care is an indictment of our healthcare system, but failure to care about the consequences is a political problem. The only cure for that is public outrage.
Back to the GMHC Treatment Issues April 2003 contents page.