The Center held a forum on Jan. 9 addressing the public health, financial and privacy issues related to name-based HIV reporting, which the Centers for Disease Control and Prevention (CDC) will mandate in 2007 and link to funding levels. California Senate Bill 945 was drafted early last year to prepare the state for the CDC mandate and aims to replace California’s current code-based system of HIV reporting with a name-based one.

Rose & Kendal, a public affairs group based in Los Angeles and Sacramento, drafted SB 945 and found state Senator Nell Soto, D-Ontario, to sponsor and introduce it on Feb. 22. Since then the bill has been amended and revised several times by its authors to reflect various concerns and privacy issues.

The Center’s chief executive officer, Delores Jacobs, said that within the last year there have been debates about privacy and resources related to public health issues.

“The privacy concerns are that if a list exists, perhaps it might be compromised and then people’s HIV status could be out there for someone to know,” Jacobs said.

Last year, the ACLU got involved in a draft revision of the SB 945 legislation, Jacobs said. “They initially had an opposed position. After they worked to write some privacy provisions into that legislation, they moved their position to not opposing,” she said.

Authors wrote into the legislation to retain anonymous HIV testing sites as an option, in addition to confidential testing where a person’s name is given and would be reported if California becomes name-based.

SB 945 says that the names of those who test positive for HIV could only be used for epidemiological purposes and would be kept confidential. AIDS cases in California have been reported by name since 1981. There have been no reported breaches of confidentiality in California, and security protocol is reviewed annually and updated, said Terry Cunningham, chief of San Diego County’s Health and Human Services Agency, HIV, STD and Hepatitis Branch.

Cunningham said anonymous testing will always be an option under SB 945, and there will not be a decrease in the number of anonymous test sites in San Diego County if name-based reporting goes into effect. He estimates that approximately 70 percent of all HIV testing in the county is administered anonymously. The county only conducts about 30 percent of HIV testing in San Diego County, with the rest done anonymously or through a private physician’s office, Cunningham said.

“Most of the county test sites are anonymous, except for those that are connected to an STD clinic, because when you go into the STD clinic, you’re registered as a patient who is going there for STD services, so a medical file is created,” he said.

With anonymous testing, a person’s name is never asked. Cunningham said if an HIV test comes back positive, the person is given referrals for treatment and services.

If California goes to a name-based system, Cunningham doesn’t believe there will be a significant increase in anonymous testing.

“Since the majority of our testing is anonymous in the first place, I don’t think there is going to be a significant difference,” he said.

There are 37 states that report HIV by name, with 13 states in a code, name-to-code and names-optional state. The CDC does not accept HIV data from these states’ jurisdictions, which includes the District of Columbia, because they currently collect and report HIV cases by coded identifiers.

Cunningham said this may explain why San Diego County has lost $1 million in Ryan White CARE Act funding over the last two years. He said San Diego County is still waiting to receive their grant award amount for 2006, but received the eleventh largest grant award in the nation last year, compared to the third largest in 2004.

“The only thing that we can connect it to is the fact that we don’t have HIV names reporting. All of those states that do not have HIV names reporting also lost funding,” Cunningham said.

If it stays with a code-based system, California could lose $50 to $100 million, and San Diego County could lose between $2.5 million and $5 million every year after the CDC mandates name-based reporting, Cunningham said.

“We’re fighting the fear of people being picked out and marked as having HIV, and that is just not going to happen,” he said. “The legislation [SB 945] is going to guarantee that is not going to happen, as it will have significant punishments against any type of breach of confidentiality.”

Michael Bursaw, a senior epidemiologist with San Diego County’s Health and Human Services Agency, said all county staff is trained according to Health Insurance Portability and Accountability Act (HIPAA) guidelines. HIPAA is the first comprehensive federal protection for the privacy of personal health information and seeks to establish standardized mechanisms for electronic data interchange, security and confidentiality of all health care-related data.

Bursaw presented the drawbacks associated with code-based HIV reporting. Since July 2002, when new statewide regulations mandated the reporting of individuals with HIV infection to local health departments, California has used four elements to build the 17-character code that is reported. The first is called a soundex, which is a four-character alphanumeric code that is generated based on the combination of consonants from the person’s last name and other digits. The purpose of using a soundex is to facilitate matching and unduplicated reporting of HIV and AIDS cases.

Bursaw said errors in generating a soundex have occurred, as well as transcription errors in documenting it. The soundex code maintains the confidentiality of reported cases by converting the last name of an individual to an index letter and a three-digit number.

The next item used in construction of the code is the date of birth, which represents eight digits. Bursaw said inaccurate transposing of the date of birth, as well as people with similar dates of birth, has resulted in errors.

The gender of the person is listed as the next character, and the last four digits of a person’s social security number complete the code. Bursaw said 25 percent of the HIV cases reported don’t have a social security number because either the person doesn’t have one or the provider didn’t document one. In those cases, the social security number is reported as “0000” within the code.

Bursaw cited other data management issues with using a code-based system, including facilities not utilizing computers for patient information other than billing, and duplicate case reports being submitted due to re-testing or other errors.

“This all leads us to the question: Can the code-based system be fixed?” Bursaw said. “I don’t think so.”

He said problems similar to California’s are reported in other code-based systems nationwide. He also said it is difficult to address basic problems such as data entry errors, name conversion issues and other incomplete data.

According to the CDC, HIV is one of 88 other communicable diseases that are reported. HIV remains the only communicable disease reported by code. All other reportable conditions are reported by name, including AIDS.