ANNAPOLIS – Maryland’s count of people infected with the virus that causes AIDS corresponds to estimates by the Centers for Disease Control and Prevention, indicating that Maryland’s findings are accurate and unduplicated, and contradicting earlier CDC concerns that confidential reporting may cause errors, health department officials said.
Although full-blown AIDS cases are reported using names, Maryland implemented a system in 1994 that reports infection by human immunodeficiency virus, the virus that causes AIDS, without using a person’s name. Those using the confidential system are assigned a number that combines their birth date, race, gender, and part of their Social Security number. “Our goal with non-name based reporting is to encourage people who may be at risk not to feel threatened,” said Dr. Lois Eldred, assistant director of the Department of Health and Mental Hygiene AIDS Administration. “People have a lot of concerns when it comes to HIV and AIDS because of the stigma surrounding them.”
Confidential HIV testing was particularly controversial last year. The CDC recommended that states use names when reporting HIV infection. Kitty Bina, CDC spokesperson, said the recommendation was based on a 1994-1996 evaluation of Maryland and Texas’s non-name based reporting systems, which found incomplete records and duplicates.
“We think name-based reporting gives you a better quality of data,” Bina said.
On Aug. 24, the CDC released an estimate showing 10,714 people in Maryland were HIV infected as of December, 1998; Maryland’s AIDS Administration reported 10,749 cases of HIV.
Bina questioned whether the CDC estimate of HIV infected people in Maryland is comparable to Maryland’s count. In order to allocate federal AIDS funding, the CDC estimated HIV cases using a modeling system that determines how HIV infection rates relate to the number of full-blown AIDS cases.
“It’s not a formal evaluation of Maryland’s system. I’m not sure if it’s OK to compare our estimate with their findings,” Bina said.
But Maryland officials say the non-name based system in place is accurate and is working.
“[The system] is controversial, but it has worked very well in our state. We’ve been able to evaluate our system and we feel good about that,” Eldred said.
Eldred said it is crucial to know how many people are HIV infected in order to observe changes in trends and to receive funding for AIDS prevention and services. But reporting the names of HIV-infected people is unnecessary, Eldred said, echoing a sentiment expressed by AIDS activists last December during a debate surrounding the CDC’s proposed guidelines.
AIDS activists cited a study published in the Oct. 28, 1998, issue of the Journal of the American Medical Association as support for confidential reporting to continue. The study found that people sought testing and medical care earlier in the course of HIV when the HIV test was anonymous.
Lori Carrick of the Eastern Shore AIDS Foundation said her organization refers people to testing sites, and many of those people ask specifically for confidential testing.
“The average John Q. Public just doesn’t want the world to know what’s going on with his personal health,” Carrick said.
Carrick said she supports a person’s right to privacy when tested for HIV, citing problems with employers as one reason HIV infected people should be able to keep their status confidential.