July 30, 2004 - AIDS Action visited the offices of the full U.S. Congress to provide information about the domestic epidemic and its impact on HIV positive people and the organizations that serve them.

Snapshot of the U.S. Epidemic
The HIV epidemic in the United States continues unabated with 40,000 new cases of HIV each year, according to the Centers of Disease Control and Prevention (CDC). CDC data further indicate that 50% of HIV positive individuals—or half a million people—are not connected to a system of long-term health care. The data also indicate that, of this half-million people, 250,000 are not aware of their HIV infection; the remaining 250,000, while aware of being HIV positive, are not in regular primary medical care—a population the Health Resources and Services Administration (HRSA) defines as the “unmet need” in the U.S. HIV epidemic. (For more information on unmet need, link here )

Researching Solutions to Unmet Need
In an effort to identify ways of bringing more HIV positive people into care, AIDS Action engaged in a two-year research project that included site visits to sixteen agencies that provide health services to address “unmet need.”

The results of this research were published in the workbook Connecting to Care: Addressing Unmet Need in HIV. The workbook provides 17 model activities from nine cities in seven states. Locations included Anchorage, AK; Seattle, WA; Hartford, CT; Nashville, TN; West Palm Beach, FL; Phoenix and Tucson, AZ; and Santa Fe and Gallup, New Mexico

Connecting to Care Initiative
AIDS Action’s research and resulting workbook are part of a broader initiative, led by AIDS Action in collaboration with HRSA. The initiative is designed to strengthen the domestic response to HIV and it provides public health administrators, AIDS service organizations, local health agencies, and other community-based organizations with HIV research analysis, practical information, and successful interventions to help connect people living with HIV to appropriate medical treatment and care. In fact, the workbook has already been distributed to over 10,000 health providers throughout the United States for this purpose.

According to Jenifer Johnson, associate executive director of AIDS Action, “The Connecting to Care workbook is a tool that can revolutionize the way that America provides HIV related health care and ensure that HIV positive individuals are engaged in a meaningful, long-term relationship with health care.”

On the Hill
During AIDS Action’s congressional visits on Wednesday, June 30 and Wednesday, July 7, Members of Congress acknowledged the importance of raising awareness about the “unmet need” in our epidemic—and finding successful ways to reduce it. Congressman Jim McDermott, MD (D-WA), Chair of the Congressional Task Force on International HIV/AIDS stated, “I am grateful to AIDS Action for its role in drawing our attention to the ‘unmet need’ in HIV and its impact on our nation’s health. The outstanding work done by local organizations will ensure that all HIV positive individuals have access to care.”

AIDS Action’s very own Government Affairs Director Donna Crews explains the Keeping Time timeline to Danielle Turnipseed from the Office of Senator Jon Kyl (R-AZ).

In addition, Senate and House offices were able to review a fold out timeline called Keeping Time, which is included in the workbook and provides a chronological listing of governmental and social advances in the U.S. HIV epidemic.

As part of these visits, AIDS Action Government Affairs Director Donna Crews and Jenifer Johnson spent two full days in conversations with staff members from congressional offices whose districts were represented by one or more of the agencies highlighted in the Connecting to Care workbook. In these meetings, Ms. Crews and Ms. Johnson detailed the models from their home states and districts that are used successfully to connect HIV positive people to care, and the workbook’s utility in assisting health providers throughout the country implement these models.

At the XV International AIDS Conference
AIDS Action traveled to Bangkok, Thailand in July to participate in the XV International AIDS Conference and delivered the message of “unmet need” to the global HIV community. “Informing our international colleagues about successful HIV intervention activities was a priority for us,” noted William McColl, AIDS Action’s political director, who attended the conference. He further added, “Our international colleagues embraced the workbook and many asked for additional copies to use in their home countries.”

A request for 60 workbooks was made by the Medical Missionaries of Mary from Nairobi, Kenya, and will be utilized at an upcoming meeting with HIV health providers from nine African countries, Brazil, Honduras, Ireland, and the U.S.

Two news articles further highlighted AIDS Action’s role in addressing our epidemic’s unmet need. The first, entitled Tending the Home Fires: AIDS care for all—including Americans, was an op-ed by AIDS Action Executive Director Dr. Marsha Martin, which appeared in the San Francisco Chronicle on July 13, 2004. The second was a mention of AIDS Action’s Connecting to Care initiative in the Publisher’s Page section of the July 16 issue of EXP Magazine.

AIDS Action, in collaboration with the 16 agencies featured in the Connecting to Care workbook, will continue to engage Congress in conversations about the unmet need of HIV positive people in the United States.