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Summer 2006

Tietz Testifies

"The challenge is no longer keeping death at arm's length for those who are engaged in treatment, but developing new strategies for how best to live with the virus for an entire lifespan," according to ACRIA's Executive Director Dan Tietz.

Tietz was testifying before the New York City Council at its June 29 "Oversight -- Older Adults and HIV" hearing. The forum was historic in that it marked one of the first times that the importance of this growing segment of the HIV population was officially acknowledged.

"The Council is to be commended for today's hearing," said Tietz after his testimony. "It's a beginning. The challenge remains to translate what is being learned into effective services for positive seniors."

ACRIA was invited to testify because of the agency's unique position as a widely recognized authority on HIV and AIDS among older people.

In his testimony, Tietz addressed the policy implications of the rapidly growing number of people facing the physical and social problems that inevitably accompany getting older and at the same time managing their HIV.

"As we enter the second quarter century of this epidemic we know that antiretroviral drugs have brought down death rates," he said, "but the virus has not been eradicated. In fact the epidemic is growing and aging. And our research suggests that many in the growing ranks of older adults with HIV will find themselves wholly dependent on an already frayed care and services safety net. We urge timely action to preserve and expand that safety net to meet the needs of older adults with HIV."

ROAH Rolls Out

ACRIA's Research on Older Adults (ROAH) project, the nation's first comprehensive study addressing the aging HIV/AIDS population will be released at a press conference on July 31.

The HIV-positive population is graying, with the fastest growing segment being individuals over 50 years of age. In New York City, the HIV/AIDS epicenter in the United States, 31% of the almost 100,000 people living with the disease are over age 50. ROAH examines the underserved, unacknowledged, yet substantial HIV-positive population of men and women of all sexual orientations and races in New York City who are growing old with this disease. The study looks both at their unique health needs, i.e., complications that arise from or are exacerbated by their age, and the complex psychological and social issues that affect these older adults.

According to Dr. Stephen Karpiak, ACRIA's Associate Director for Research and one of the study's principal investigators, the primary reason for the consistent growth of the number of people over 50 with the virus is the success of anti-HIV drugs that enable infected persons to live longer lives. As people with HIV grow older, however, they face a host of health challenges that are common in older adults but compounded by HIV/AIDS. How these conditions, and the medications used to treat them, will affect them is largely unknown.

This study also examined for the first time the sexual behavior, substance use, and social networks of these older people with HIV, as well as their physical, emotional, and behavioral health. ROAH found that older adults living with HIV are also greatly marginalized and neglected, creating a population of persons over 50 who are living with this disease, yet who lack the social support systems they need and whose healthcare providers may be insensitive to their unique and changing needs.

"The success of anti-HIV drugs makes it probable that that age group will account for the majority of people with HIV within the next decade," according to Karpiak. "Unfortunately, they face a healthcare system, social support networks, and communities ill-prepared to meet their needs."

Community Mapping Initiative Completed

The Community Mapping Initiative, a project of ACRIA's HIV Health Literacy Program working closely with our Research Department, has been completed and a report compiled. The program was an effort to "map" HIV-positive people throughout New York City with regard to a variety of factors affecting their access to care, their ability to participate actively in their own care and make informed decisions, and the concrete effects on their care of the availability of community-based treatment education.

The study assessed the HIV health literacy levels and treatment education needs of HIV-positive women of color throughout New York City. The survey was conducted with the cooperation of over 50 NYC ASOs and was done with the assistance of fifteen community members, twelve of whom were women.

The study found that the women surveyed do not experience significant barriers to treatment, but their health literacy levels are not optimal. Knowledge, attitude, and behavior, as studied in this survey, showed areas needing improvement. The majority of subjects failed to answer 20% of the questions that are considered important for their own medical management correctly, less than 50% strongly agree that they want to be involved in decision making regarding their health, and just above 50% strongly or very strongly endorse their relationships with their medical care providers.

The full report, "HIV Health Literacy and Treatment Access: Women of Color in New York City," is posted on ACRIA's Web site,, as is a brief fact sheet summarizing the findings. The study was underwritten by a grant from the New York City Communities of Color HIV/AIDS Coalition.

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This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.