In 1991, New Jersey had one of the highest AIDS rates in the United States. In recent years, both the state and the country have made great strides in reducing the number of HIV and AIDS cases through early detection and advanced treatment options. Between 2008 and 2017, New Jersey saw a 23.2 percent reduction in the rate of newly diagnosed HIV patients per year, and nearly 30 percent reduction in the rate of HIV deaths. All told, more than 37,000 people, or one out of every 235 New Jerseyans, is currently living with HIV/AIDS – a success story for an illness that was considered a death sentence just a generation ago. With medical and pharmaceutical advances, HIV has become akin to a chronic condition in which infected individuals can live a full and healthy life, with proper management of the condition.

But there’s more to the story. Incidence rates show that the number of New Jerseyans newly diagnosed with HIV remains high at 12.7 per 100,000 population. This is the 13th highest rate in the nation. An analysis of incidence rates reveals insight into the people most vulnerable to HIV infection. They include:

• Those who inject drugs. 11 percent of New Jersey’s newly diagnosed cases were transmitted through injection use. This is nearly double the national average.
• African-Americans. Blacks comprised 45 percent of the newly diagnosed HIV patients in 2017; however, only 13 percent of New Jersey’s overall population is black.
• Hispanics. While the state has seen an overall decrease in the rate of newly diagnosed HIV patients, the rate of newly diagnosed Hispanic HIV patients remains unchanged.
• Low-income individuals. 38 percent of the population living with HIV/AIDS in New Jersey falls within the definition of low-income, which is 400 percent of the federal poverty level.

This white paper recognizes the success in treating people with HIV in New Jersey, but – more importantly – uses data to pinpoint populations and factors that remain vulnerable to HIV infection. Examining local data on the most vulnerable populations can help direct resources to treat, manage and prevent the disease within the state.

Identifying and Tracking AIDS

On June 5, 1981, The Centers for Disease Control and Prevention (CDC) released its Morbidity and Mortality Weekly Report (MMWR) which, for the first time, reported on the deaths of five homosexual men in Los Angeles who were diagnosed with Pneumocystis carinii pneumonia (PCP), an infection found almost exclusively in those with severely compromised immune systems. These cases would become the first publicly reported Acquired Immunodeficiency Syndrome (AIDS) cases in the United States.

Following this discovery, AIDS tracking programs were swiftly implemented across the nation. State departments of health began mandating that physicians and hospitals identify and track any AIDS patients by name. A majority of states adopted these tracking procedures by 1983, and all 50 states had a procedure in place by 1986. This led to the compilation of a comprehensive database of AIDS patients. However, these patients only entered the database once they were infected with AIDS and in many cases already very ill. A better tracking system is one which identifies the earliest predictor of AIDS, the Human Immunodeficiency Virus (HIV).

HIV is a virus which damages the immune system. Left untreated, the virus can progress to AIDS, a disease caused by the destruction of the immune system. AIDS is the most severe level of HIV and commonly leads to death, either from the disease itself or from complications arising from it. With early diagnosis and proper treatments, people can live with HIV for many years without developing AIDS. Quicker identification and tracking of HIV patients would likely serve to decrease the overall incidence of AIDS as patients could receive treatments and support services earlier, delaying the development of AIDS.

New Jersey’s Leadership

Starting in 1985, many states implemented anonymous HIV tracking, in contrast to the name-based AIDS tracking already adopted by most. Anonymous tracking, which kept a person’s HIV status private, was preferred due to concerns of data breaches, which could lead to social stigma and discrimination.

New Jersey, with one of the highest AIDS case rates in the country, became the first state to create a name-based HIV tracking database in 1991. To address privacy concerns, this data was housed on two computers at the Department of Health (DOH). These computers were in a locked enclosure, which only three state employees were granted access to enter test data from physicians, hospitals and testing centers. New Jersey law provided further protections to those who were tested by allowing them to sue for damages if a breach of this data occurred. Tracking cases by the patient’s name did not appear to discourage testing, with New Jersey’s testing rates comparable with other states.

New Jersey’s pioneering name-based HIV tracking system was eventually replicated nationwide. By 2003, 39 states had adopted a name-based system. The other 11 states were using a code-based system which assigns a unique identifier to each patient without revealing their actual name. However, by 2008 all 50 states adopted the name-based HIV tracking system. The 11 remaining states transferred to this system as federal funding from the Ryan White HIV/AIDS Program was contingent on having a name-based system in place.

Since the creation of New Jersey’s name-based system in 1991, HIV tracking has evolved, with the standardization of definitions and collection methodologies across all 50 states. Thanks to this work, the last decade has provided the most reliable data on HIV in the nation. Examining this data both on a national and state level helps identify trends in prevalence, death rates and methods of transmission.

In the past three decades, researchers have collected a vast range of data and information on HIV and AIDS, helping to educate the public on modes of transmission and prevention strategies. Numerous federal programs such as the Presidential Advisory Council on HIV/AIDS; U.S. President’s Emergency Plan for AIDS Relief (PEPFAR); the Global Fund to Fight AIDS, Tuberculosis and Malaria; the Housing Opportunities for People with AIDS (HOPWA) Program and the Ryan White HIV/AIDS Program have devoted funding and resources to the cause.

These resources provide greater insight into trends and allow for the improved allocation of resources and treatments as the face of the HIV patient continues to evolve and change.