What is changing January 1, 2007?

The Massachusetts Department of Public Health (MDPH) is changing how cases of HIV will be reported to the Department. Starting January 1, 2007, all cases of HIV infection will be reported by name instead of by code.

What was the previous reporting system?

Since 1999 HIV cases have been reported using a code that cannot be tracked back to your name. This code is sent to the Massachusetts HIV/AIDS Surveillance Program of the Massachusetts Department of Public Health. Cases of AIDS have been reported by name since 1983. Under no circumstances are names ever reported to the federal government.

Why is the state health department making this change now?

Massachusetts has collected HIV cases by code since 1999 through a system that has worked well. However, federal law is changing the way the state receives funding for HIV/AIDS services. In order to avoid losing millions of dollars in federal funds that support these services, Massachusetts must change its reporting system. This change will also allow the federal government to better understand the HIV/AIDS epidemic at the national level and target funds since HIV cases in addition to AIDS cases will now be counted. No names, however, will be reported to the federal government.

Who reports HIV?

Under state regulation, any diagnosing physician who provides primary care for an individual with HIV infection or AIDS is required by law to report this case to the state health department. Usually this is a person's primary medical care provider. Counseling and testing providers who are not diagnosing physicians are not required to report HIV or AIDS.

How is the reported information used?

Information from HIV and AIDS reporting is used to monitor the HIV/AIDS epidemic and to help plan and carry out programs to prevent HIV infection, treat HIV disease, and provide support for people living with HIV/AIDS. For example, the information is used to:
  • Determine the number of people living with HIV/AIDS in Massachusetts
  • Plan HIV prevention programs
  • Direct funds and other resources for HIV/AIDS programs to areas where they are most needed
  • Qualify for funding which is distributed based on the number of cases of HIV/AIDS.

Who is able to see my information?

The names of individuals reported living with HIV are sent directly to the HIV/AIDS Surveillance Program. State regulations prohibit names to be shared with anyone else including the state or federal government. The privacy of reported persons will be strictly protected. This is the same system that has been in place for reporting of individuals living with AIDS since 1983. According to state regulation, at no time can the names of people with HIV or AIDS be shared with the federal government, any state or local department, or with any other program in the state health department. Public reports based on these data never include names or identifying information and group statistics to protect individual privacy.

How will my privacy be protected?

The HIV/AIDS Surveillance Program has developed strong security measures to protect the safety of HIV/AIDS information. Only members of the surveillance program who sign an oath of confidentiality have access to HIV/AIDS data. High level security measures protect these data, including a guarded entrance to the building that houses the data, a locked room holding all HIV/AIDS data that only surveillance program staff may enter, and a surveillance program computer which is protected by password and not connected to the Internet or any other computer network. Since MDPH has collected named AIDS cases since 1983, these data have been securely held without incident.

I have already been reported by code. Will I be reported again by name?

All people living with HIV in Massachusetts who are in medical care will be reported by name starting January 1, 2007. If you were previously reported, your health care provider will send a new report to the health department that adds your name to the earlier report.

Will anonymous HIV testing still be available?

Yes, free, anonymous HIV testing will continue to be available at sites throughout the state. Results of anonymous tests are not reported to the Department by anonymous testing sites.

For a complete listing of testing sites in your area please view the Counseling and Testing area at www.mass.gov/dph/aids.

For More Information

Massachusetts HIV/AIDS Surveillance Program
Massachusetts Department of Public Health
AIDS Action Committee Hotline

For a complete list of Massachusetts resources, go to www.mass.gov/dph/aids.

This information is provided by the Bureau of Infectious Disease within the Department of Public Health.