Supporters Say California HIV Reporting Bill Would Increase Understanding of HIV/AIDS; Lead to Improved Allocation of Federal Ryan White Funding

SACRAMENTO, Calif. -- A growing statewide coalition of California government, health, consumer and community organizations including the Los Angeles County Department of Health Services is lining up in support of State Senate Bill 945 (Soto, D-Ontario), a bill that would allow the confidential reporting of HIV infection by healthcare providers and labs by the name of the patient to local health officials and the state Department of Health Services.  Currently, California collects and records these data via

a code-based system, which health officials have found to be and many AIDS

advocates see as inaccurate, cumbersome and very costly.

One of the catalysts for the bill -- authored by Senator Nell Soto and co-sponsored by Los Angeles County, the AIDS Healthcare Foundation and the Health Officers Association of California -- is changes in how the federal government will allocate funds for HIV/AIDS care and treatment to state and local governments.  Starting in October 2006, under the Ryan White CARE Act of 2000, the federal government will allocate HIV/AIDS funds to state and local governments based on the number of HIV cases reported.  While cases of AIDS have been reported by name since the beginning of the HIV/AIDS epidemic, the

state of California has required local health officials to report HIV cases only since July 2002.  This recent change came about in an effort to improve knowledge and understanding of the disease and its prevalence and progression, but has proved to be inefficient, costly and burdensome.

"SB 945 would amend the California Health and Safety Code to replace the current code-based HIV reporting system with a name-based HIV reporting system in an effort to improve our knowledge of the disease and bring us into compliance with pending national changes in both reporting and funding," said Sen. Nell Soto, the bill's author.  "However, it is important that all Californians -- both individual consumers and my colleagues in the legislature -- know that this bill will also preserve anonymous HIV testing as an option for Californians who may so choose.  I firmly believe such HIV reporting should be adopted statewide in 2005 in order to allow California adequate time and resources to implement a system that will be in compliance with CDC standards while also help the state avert potentially devastating federal funding losses estimated to be between 50 and 100 million dollars annually."

"The proposed system of confidential HIV reporting will provide more accurate, reliable and valid data, at reduced cost," said Jonathan Fielding, MD, MPH, director of public health and health officer, County of Los Angeles. "This system will significantly improve understanding of the HIV/AIDS epidemic. We know that the HIV epidemic continues to change, and it is critical that we have the best possible information about those who may need services as quickly as possible so that we can end this epidemic.  Better information will help maximize federal revenues critical to the provision of treatment and services for persons with HIV/AIDS in California."

"I urge all legislators who are carefully evaluating this bill, please don't take a risk with our lives," said Carla Bailey, an HIV positive single mother and AIDS advocate who serves on the Los Angeles County Commission on HIV Health Services.  "Without passage of this legislation, California has the potential to lose millions of dollars in federal AIDS funding.  I'm afraid that people in need -- particularly women and people of color -- will have greater difficulty accessing much-needed care and services, and I am hearing the same concerns throughout the community."

"This bill will do one thing only: it will allow the reporting of HIV infection by healthcare providers and labs by the name of the individual to local health officials and the state Department of Health Services," added Michael Weinstein, president of AIDS Healthcare Foundation (AHF), operator of the largest alternative site HIV testing program in California which conducts more than 15,000 HIV tests annually.  "The proposed HIV reporting system will not allow any identifying information to be passed on to the federal government or immigration authorities, and it will not compromise the

confidentiality of any of the individuals tested.  Over 136,000 AIDS cases have been reported by name in California over the past 24 years without a single breach of confidentiality.  Supporters of SB 945 fully expect the same to be true with HIV cases reported under this system."

California implemented its code-based HIV reporting system in July 2002.

This system requires counties to report cases of HIV within their jurisdictions by codes, a system that many health officials have found to be inaccurate, labor-intensive and costly.  Los Angeles County officials estimate that problems resulting from the use of code-based reporting costs the County up to $1 million per year -- money that could be used for much-needed HIV testing, prevention, outreach and treatment.

Soto's bill would bring the current system into line with national reporting norms by utilizing a name-based system like those currently in place in 38 other states including several of the states with the largest populations of people living with HIV/AIDS: New York, Florida, Texas and New Jersey.

Without a name-based system, and with the shift of federal formulas to be based on all cases collected by name, the share of federal funds allocated to California will be dramatically reduced.  The California Department of Finance estimates the loss to California at a minimum of $50 million, and a maximum of $100 million, annually.

The federal funds are used to pay for medical care and drugs for low-income Californians with HIV/AIDS.  If funding is reduced, it will result in significant reductions in services for people with HIV/AIDS.

Source: Supporters of SB 945