Epidemiologists tracking the spread of HIV in California will begin using data based on patient names rather than relying on a flawed code-based system under a new law signed Monday by Gov. Arnold Schwarzenegger.
The shift will ensure that California continues to receive more than $50 million annually for HIV/AIDS care from the federal government, which has ruled that code-based reporting is unreliable. With at least 38 states already signed on to use patient names, California is one of a handful of states still using alphanumeric codes to identify HIV cases.
The bill, sponsored by Sen. Nell Soto (D-Pomona), unanimously cleared the state Senate and Assembly and was lauded by health officials around the state.
“This is a historic moment in time in fighting AIDS,” said Michael Weinstein, president of the AIDS Healthcare Foundation. “We’re aligning the way we handle AIDS to how we handle all other public health issues.”
Under the code system, enacted in July 2002, healthcare providers and labs reported HIV infections to local health agencies and the state Department of Health Services using codes created from birth dates, gender and elements of the patient’s last name.
The practice of using codes was created to ensure patient confidentiality, but proved to be a bureaucratic nightmare for health officials. County health departments have reported difficulties in exchanging data with doctors and duplication of HIV cases. Sorting out errors, argue proponents of the bill, has proven to be both expensive and time-consuming.
“It’s been an incredible waste of energy and resources,” said Dr. Douglas Frye, a medical epidemiologist with the Los Angeles County HIV epidemiology program. Frye estimates that the county spends about $1 million per year researching duplicate cases or errors in reporting.
Concerns about compromising patient privacy initially sparked opposition to the switch, but measures to protect the data have been enhanced and those seriously concerned about confidentiality will still have the option of getting tested at anonymous testing sites, officials said.
“We take security and confidentiality very seriously,” Frye said. “We think that there are enough precautions in place.”
According to new provisions in the Ryan White CARE Act, which provides funding to states and metropolitan areas for HIV/AIDS care, states using patient codes will no longer be eligible for funds, which will be allocated later this year. Los Angeles County, which records approximately 1,500 to 2,000 new HIV diagnoses each year, is set to receive $34.9 million this year.
“We are not oblivious to the stigma of testing positive for HIV,” said Philip Curtis, director of government affairs for AIDS Project Los Angeles. But without switching to names-based reporting, California is “likely to lose an enormous amount of funding,” Curtis said.
Tracking the HIV epidemic accurately is critical in determining where to allocate treatment and prevention grants. Full-blown AIDS cases are currently reported by name in California, but because symptoms of AIDS can take up to a decade to appear, AIDS data are not considered an accurate way to trace the spread of the disease.
“You can’t fight any disease without knowing where the hotspots are,” Weinstein said. “When you judge by AIDS cases, you are judging what happened 10 years ago. We need to know where the HIV-positive people are today.”