Mass. Requires Name Reporting for HIV Testing

Published February 1, 2007

Beginning this month, Massachusetts will require doctors to report to the state health department the name of anyone testing positive for the human immunodeficiency virus (HIV), rather than using the code the agency has used for the past 20 years.

Donna Rheaume, a spokeswoman for the Massachusetts Department of Public Health, said the change is being made because in 2006 the federal government began distributing funds from the Ryan White Care Act–the 1990 law providing care to HIV patients–only to states using name-based reporting systems.

According to the Centers for Disease Control and Prevention (CDC), 45 states already use name-based systems. Of these, California, Delaware, Illinois, Maine, Oregon, and Rhode Island switched to name-based systems in 2006.

HIV Chart

“We would not want to jeopardize $15 million in federal funds,” Rheaume said. “And it should be pointed out that a majority of states already have a name-based reporting system in place.”

Maintaining Security

Rheaume said the names will be kept secure.

“We will be keeping this information in a secure computer system at the state lab, which very few people have access to,” Rheaume said. “We operate and collect information under strict legal and procedural guidelines. Personal identifiers are never shared outside the surveillance program, or with any other agency, including the CDC. To my knowledge, we have never had a breach of confidentiality.”

But Twila Brase, president of the Citizens’ Council on Health Care (CCHC), a free-market group based in Minnesota, said any time names are reported, privacy is a concern.

“If you have names, you know who has been tested and you know who has tested positive,” Brase said. “This makes the potential for compiling a database very real, especially because the Health Insurance Portability and Accountability Act [HIPAA] does not require people to give consent for the public health department to access their medical records.

“As an organization, CCHC believes that parent/patient consent is essential,” Brase continued. “It is essential for trust in government, let alone the collection of accurate statistics and the willingness of individuals to seek medical care without fear.”

Maintaining Trust

Name-based reporting systems could lead to public health problems, Brase said, because people may become less willing to be tested for HIV and AIDS when they know the government will have their names on record.

“They feel that data collected by the government cannot be protected, even if it is considered private,” Brase said. “A law can be amended or passed at any minute that allows such information to be made public or shared with organizations such as employers or health plans. So the problem with government databases becomes the power that lies behind them.

“If ever there was a time for agreement between CCHC and public health departments on the issue of creating databases that cite individuals’ names, it would be when these individuals are dying of a communicable disease and the agencies wish to prevent that,” said Brase.

Though the “public’s trust in public health is being diminished every day by the ongoing compilation of databases on the American people, often without their knowledge,” Brase said Massachusetts’ database might be warranted.

“When lives are at stake, we are willing to concede that public health departments have a significant role to play,” Brase said. “Unfortunately, they may have shot themselves in the foot with their continuous building of databases. In terms of reporting those who test positive for HIV by name, how the government acts will determine how the public reacts.”

Charlotte LoBuono ([email protected]) is a freelance health and medical writer in Hoboken, New Jersey.

For more information …

Massachusetts Department of Public Health,

Citizens’ Council on Health Care,