HIV infections will now be tracked by name in California.

On April 17, Governor Arnold Schwarzenegger signed Senate Bill 699 into law. Sponsored by Senator Nell Soto, D-Pomona, the bill increases penalties for releasing confidential information and supports continued federal funding for HIV/AIDS-related programs and services. According to the Kaiser Family Foundation, 38 states currently report name-based HIV incidence data to the Centers for Disease Control.

“This bill and the prompt implementation of a name-based HIV reporting system will better position California against a potential loss of up to $50 million in federal funding for HIV prevention efforts and critical health care services for Californians living with HIV or AIDS,” Schwarzenegger said in a statement. “Maximizing federal Ryan White CARE Act funding is a high priority for my administration, as it is critical to maintaining needed services, including access to life-saving medications for more than 25,000 Californians living with HIV or AIDS.”

SB 699 changes the state’s current HIV tracking system from one based on an alphanumeric code assigned to each patient to one based on patient names. Proponents of the bill say a name-based HIV reporting system increases the accuracy of HIV data and aligns the reporting of the disease with all other communicable and noncommunicable diseases in the state, including AIDS. The bill also doubles the penalty, up to a maximum of $25,000, for willful or malicious disclosure of HIV test results.

Rose & Kindel, a public affairs group based in Los Angeles and Sacramento, drafted SB 699 and found state Senator Soto to sponsor and introduce it on Feb. 22 of last year. Since then, the bill has been amended and revised several times before being reintroduced into the Assembly and Senate earlier this year. After various hearings, it passed by a 69-0 vote on March 30 in the Assembly and by a 32-0 vote on April 6 in the Senate.

According to new provisions in the Ryan White CARE Act, which provides funding to states and metropolitan areas for HIV/AIDS care, states using code-based systems will no longer be eligible for funds as of fiscal year 2007, which begins Oct. 1.

Since July 2002, when new statewide regulations mandated that local health agencies and labs report individuals with HIV infection to local health departments, California has used four elements to build the 17-character code that is reported to the state Department of Health Services. The code is derived from a combination of each patient’s birth date, social security number, gender and elements of the patient’s last name.

The code-based system has been criticized because of various transcription errors, difficulties in exchanging data with doctors and duplications of HIV cases. Name-based supporters have also said the code-based system has been time-consuming and expensive to maintain.

Terry Cunningham, chief of San Diego County’s Health and Human Services Agency’s HIV, STD and Hepatitis Branch, said the county has a year to get the new system implemented, according to the bill.

“Even though we’ve been doing the non-names coded system, we have to start off from ground zero,” he said. “Of course, the epidemiology department is going to attempt to get as many of those confirmed by providers as possible and then [we] can start … to gather the names.”

SB 699 states that the names of those who test HIV-positive can only be used for epidemiological purposes and will be kept confidential. AIDS cases in California have been reported by name since 1981. There have been no breaches of confidentiality in California and security protocol is reviewed annually and updated, Cunningham said.

“We’ve never had a break of confidentiality here in San Diego, so I don’t think that is a worry at all for anyone,” he said. “There will be anonymous testing still available at several sites here in San Diego County. That should not be a barrier to people getting tested.”

Cunningham said under confidential testing, names will be reported to the county only, and then the figures are sent to the state. If a person tests positive through an anonymous test site, then they will be given a list of resources and medical providers. Once they access those resources, the name will then be reported through their provider.

Continued HIV/AIDS funding cuts to the Ryan White CARE Act Title I/II monies have not made it easy for county health departments to implement programs and services, Cunningham said. The San Diego HIV Planning Council made cuts for the third consecutive year, reducing services for HIV/AIDS consumers in San Diego County by $476,914 (approximately 5.2 percent.) This made the total operating budget stand at a little over $9 million for the contract year, which began March 1 and ends Feb. 28 next year.

California’s name-based system will take time to completely implement, according to Rand Martin, a lobbyist for Rose & Kindel.

“It’s going to take a little bit of time to finalize emergency regulations that were required under the bill. Then it will take time for those emergency regulations to get disseminated to the rest of the world in California and to start the process,” Martin said.

Martin estimates it will be a six to eight-month process to get the emergency regulations out. “I know that every effort is being made to have it happen as soon as possible, because the reality is that the integrity and the maturity of California data going to the federal government is going to take two to three years to be fully in place,” he said.

Martin said with the pending reauthorization of the Ryan White CARE Act, there is hope a transition plan for California can be implemented because its name-based system will not be fully functional by the time the 2007 fiscal year begins on Oct. 1. California could still receive a reduction in funding due to not reporting names, he said.

“Even the governor’s office and the department of health services have indicated that they wouldn’t be surprised if we lost some money in the short-term,” he said. “The providers and the counties feel the same way about that, simply because what we’re going to have to present to the feds on Oct. 1 is going to be minimal at best and maybe nonexistent.”