Names reporting fallout continues in states’ battles
Heated debates rise in states considering new laws
Since the Centers for Disease Control and Prevention (CDC) in Atlanta released its guidelines recommending names reporting late last year, political battles have erupted in more than a dozen states where new confidentiality and names reporting laws have been introduced.
To stir things up even more, some states have introduced laws that would further erode the confidentiality of a person’s HIV status, including partner notification laws, reporting HIV test results to emergency workers and police, and mandatory testing requirements.
These developments have led to grass-roots protests, such as the half-dozen AIDS activists who chained themselves to furniture in the office of New York AIDS Institute Director Guthrie Birkhead, MD, in late April. The activists issued a list of demands, including asking the New York legislature to repeal the state’s new names reporting and partner notification law.1
So far, 33 states require names-based HIV reporting. Ten states have non names-based HIV reporting systems: Georgia, Illinois, Kentucky, Maine, Maryland, Massachusetts, Montana, New Hampshire, Oregon, and Rhode Island. Connecticut and Vermont have passed legislation requiring unique-identifier systems, but the laws have not yet been implemented.
Will names reporting hamper testing?
Names reporting might have the support of AIDS epidemiologists — who view it as the most efficient way to collect data on HIV infection rates nationwide — but the very mention of the practice is enough to rile AIDS activists, clinicians, and others who fear it will cause a major setback in community HIV testing and counseling efforts.
One of the strongest opponents of names reporting, the New York-based Lambda Legal Defense and Education Fund, has launched campaigns against various state proposals.
"We are afraid that names reporting is going to dissuade people from being tested and keep people from getting the treatment they need for AIDS," says Rachel Tiven, managing editor for Lambda Update.
"We think ultimately an accurate count of people who are willing to be tested with their names is not an accurate count at all," Tiven says. "You may have a more accurate list, but you may have dissuaded more people from being tested at all."
Lambda wrote a protest letter to health officials signed by more than 60 leading AIDS and civil rights organizations, stating that names reporting will engender fear that discourages testing and creates more barriers to health care. The letter says, in part: "The overwhelming weight of evidence shows that significant numbers of people avoid testing if their names will be reported. Even a CDC-sponsored study, cited to show otherwise, demonstrated that nearly 20% of people interviewed identify names reporting as a factor preventing people from getting HIV tests."
Names reporting might especially dissuade minorities from being tested because they often tend to be distrustful of government, some opponents charge.
"In Michigan, when they moved to names reporting, the amount of HIV testing in the African-American community decreased 26%," says Heather Sawyer, JD, staff attorney for Lambda in Chicago. Lambda’s Chicago office last year successfully challenged Illinois’ move to names reporting and convinced state officials to switch to a non-name-based system as an alternative. (See story on Illinois’ reversal on names reporting, p. 82.)
"What Illinois is doing is they’ve created a non-name identifier that has a formula for determining how each person will be uniquely identified without using the person’s name," Sawyer says. "We’re now entering a two-year test period, and the state is training health care providers on how to code test results."
New York internist Robert Cohen, MD, opposes his state’s new names reporting law because it infringes on the private relationship he shares with his patients, forcing him to report their names, addresses, demographic data, and any potential sexual or needle-sharing partners to the state. "The state could ask me who the significant contacts are of one of my patients, and because of this law, patients are deciding not to be tested," says Cohen, who is the director of the AIDS Center at St. Vincent’s Hospital in Greenwich Village.
Paying the price for anonymity
Although Cohen’s patients have the option of being tested anonymously at certain clinics, they would lose emotionally because they wouldn’t have the opportunity to receive the bad news from the doctor with whom they’ve already developed a trusting relationship.
"One of the hardest things I do is give people their test results," Cohen says. "And it worries me about names reporting that my patients may have to find out about their HIV status in another setting instead of finding out from me."
The CDC recommends names reporting because it’s the best way for HIV surveillance programs to eliminate cases that are counted twice, says Joe Posid, MPH, deputy chief of the HIV/AIDS surveillance branch.
HIV-infected people go to a number of different providers, including laboratories and physicians, and each time they see a new provider they are likely to be reported as a separate HIV case. So the CDC seeks to prevent this duplication through names reporting, Posid explains.
Lambda Legal Defense advocates that states adopt a unique identifier system, in which each HIV case would be assigned one number that could be used at all provider sites. It might work like a social security number.
However, the CDC doesn’t believe this system will work. Currently, only Maryland has used a unique identifier in place of reporting names for any length of time, Posid says. "Texas evaluated it for several years and found it insufficient, and then adopted a names-based system," he notes.
New Jersey touted as success
CDC officials sometimes point to New Jersey’s name-based reporting system as an example of one that has succeeded. Since 1991, New Jersey has offered people the option of being tested for HIV anonymously or having their names reported confidentially.
Between 1995 and 1998, state health department figures show that 229,913 people opted for HIV testing that would disclose their names on a confidential basis. Of those tested, 7,491 had HIV, about 3.26% of the total. Another 31,644 people opted for the anonymous test, and of that number, 699 had HIV, about 2.21% of the total tested.
These statistics indicate that people are comfortable with names reporting — even people at high risk for HIV infection, says Sindy Paul, MD, MPH, medical director of the Division of AIDS Preven tion and Control at the New Jersey Department of Health and Senior Services in Trenton.
Paul also cites another statistic that lends support to the argument that names reporting does not deter people from seeking HIV testing and counseling. "One of the things we have looked at is whether people have been leaving New Jersey for counseling and testing in New York or Pennsylvania," Paul says.
Neither of the two neighboring states had names reporting prior to 1999. But New Jersey officials found no trend of increasing numbers of people crossing state lines to be tested elsewhere. In fact, they found that more New York and Pennsylvania residents were tested in New Jersey after names reporting began. Paul has no explanation for this counterintuitive trend except to say the number of people seeking testing rose everywhere after basketball star Magic Johnson announced his HIV status in 1991.
Still, states that have names reporting also should give people access to the option of anonymous testing, because the most important aspect of any testing system is making sure HIV-infected people receive counseling and treatment, Paul says.
About 30 states have a names reporting system, and many of the remaining states may implement one soon. That’s what has pushed the issue into coast-to-coast headlines in recent months.
Here’s a brief list of states where controversies have flared recently over names reporting, partner notification, or forced HIV testing bills:
• California: After continued pressure from AIDS activists opposing the measure, the California Senate Health and Human Services Committee defeated a bill in mid-May that would have required name-based reporting for HIV-positive individuals. The bill, which was sponsored by Sen. Ray Haynes (R-Riverside), would have required the state health department to develop and implement a names reporting system that included partner notification.2
• Connecticut: State health officials opposed a bill introduced that would require mandatory HIV testing for all pregnant women. Critics said the bill would scare women away from prenatal care, while supporters said it would result in reduced mother-to-child HIV transmission.3 All 50 states require pregnant women to receive HIV counseling from their health care providers, and four states — Michigan, Mississippi, Tennessee, and Texas — require providers to test every pregnant woman for HIV unless the woman refuses. Additionally, Indiana, Rhode Island, and New Jersey require providers to offer HIV testing to pregnant women.4
• Kansas: Gov. Bill Graves signed a bill on April 15, 1999, that will force physicians and laboratories to report to the state health department the names and addresses of all people who test positive for HIV. The secretary of the Kansas Department of Health and Environment will establish rules regarding the confidentiality of data about HIV-infected individuals. Previously, Kansas only required providers to report the names of people diagnosed with AIDS.5
• Oregon: AIDS activists encouraged state health officials to consider issues of confidentiality and discrimination as the Oregon Health Division considered expanding its AIDS database to include the name, address, age, gender, race, and risk behavior of HIV-infected people. Oregon officials held public forums in April, seeking input and reassuring people that the state always would give people the option of anonymous testing. The state has been using non-name-based reporting except for children younger than six years of age and for special circumstances.6
• Nevada: The Nevada Senate and Assembly passed legislation that would allow emergency workers, firefighters, and police officers to force a person to be tested for HIV and hepatitis B if that person splashed blood or other bodily fluids on them. Gov. Kerry Guinn has signed the bill into law. Before being able to force an HIV test, they will have to convince a court that they have been exposed. The state’s law enforcement officials strongly support the law.7
• Ohio: A bill that passed the state house but failed in the Senate would have required HIV-infected people to notify potential sexual partners of their infection. Ohio lawmakers would have made it a felony punishable by a prison sentence of two to eight years for an HIV-positive person to have sexual relations without first disclosing his or her HIV status. Critics charged that the state didn’t regulate other diseases, such as hepatitis C, in the same manner.8
County defies state mandate
• Washington: The state Board of Health has proposed a unique identifier that has one county’s health officials in an uproar. The state’s unique identifier proposal, which is expected to be approved in July, will require local health departments to regularly purge the names of HIV patients from their files and send the codes to the state health department. However, Pierce County officials said they would continue their policy — which went into effect Jan. 1 — of keeping the names, because it’s a successful way to track the spread of HIV. Pierce County’s public defiance of the state’s move to a unique identifier system has raised the ire of several AIDS advocacy groups, including the Northwest AIDS Foundation, Positive Voice Washington, and Resist the List.9
• Vermont: In May, Gov. Howard Dean signed a bill requiring the state health department to develop a unique identifier system to track HIV cases. Legislators said they were concerned that patients would lose their confidentiality if the state used a names-based system.10
• New York: The state legislature’s program for mandatory names reporting of HIV-positive patients drew much criticism from AIDS activists and physicians in early 1999 during the regulations’ 45-day comment period, which ended May 1. The program requires health care workers to disclose the names of HIV-positive patients and their sex partners. Critics blasted the proposed regulations’ unwieldy requirements of mandatory partner notification and that doctors and lab technicians report an HIV-positive individual’s name to the state within 21 days of the person seeking treatment, even if the person had opted for anonymous testing.11
Immigrants may fear name reporting
New York’s bill has drawn the most fire, partly because the state has the most on the line, with 11,329 AIDS cases according to the latest CDC count — 5,000 more AIDS cases than any other state. Plus, New York City has a large minority and immigrant population, and names-reporting critics say immigrants — especially those who are there illegally — are unlikely to seek HIV testing and counseling if they believe their names will be reported to authorities.
"If you were an undocumented immigrant, and you knew your name would be reported to the state, you wouldn’t be tested," Tiven says. "The people who have the most reason to distrust the system would not be tested."
For example, Tiven says, a 1997 study conducted by the Latino Commission on AIDS in New York showed that 72% of Latinos surveyed would not be tested for HIV if they knew their names would be reported to the health department. For the highest-risk group of Latinos, those between the ages of 16 and 25, the percentage was even higher (87%).
Then there’s the question of whether a person’s HIV status could be used against him or her in court. While New York’s regulation should guarantee that data wouldn’t be used in criminal proceedings, opponents are skeptical.
For instance, the state broke its own confidentiality laws to identify one HIV-positive man, Nushawn Williams, 22, who was sentenced to four to 12 years in prison for statutory rape and charges of reckless endangerment for having sex with a teenager who later became infected with HIV. He was accused of infecting 13 women with HIV.12
The names-reporting law will further strain confidentiality efforts. "The new bill allows corrections officers and emergency medical staff to find out the HIV status of someone when they’ve been in contact with their body fluids, and that’s not just for a needlestick injury," Cohen says. "That’s a bad precedent of limiting the confidential relationship patients have with their physician."
1. AIDS activists take over health department office. Newsday Online, April 28, 1999.
2. California: Senate defeats names-based HIV-reporting bill. Kaiser Daily HIV/AIDS Report, May 13, 1999.
3. Groups oppose bill to require HIV testing of pregnant women. Newsday Online, March 3, 1999.
4. Watson. Health policy tracking service snapshot. Kaiser Daily HIV/AIDS Report, April 9, 1999.
5. Doctors must report names of those who test HIV-positive. Topeka Capital-Journal Online, April 16, 1999.
6. Across the USA: Oregon. USA Today, April 6, 1999:13-A.
7. Assembly OKs bill letting police force HIV exams. Las Vegas Review-Journal, May 7, 1999.
8. Tatge M. Bill would require HIV disclosure. Cleveland Live NewsFlash/Plain Dealer Online, Feb. 10, 1999.
9. Quigg D. State, Pierce collide over HIV rule. Tacoma News Tribune, May 13, 1999.
10. Watson. National Conference of State Legislatures. Kaiser Daily HIV/AIDS Report, May 14, 1999.
11. Tully. State set to track, name AIDS patients. New York Daily News, March 12, 1999.
12. N.Y. man who spread HIV sentenced to 4 to 12 years. Washington Post, April 6, 1999:A-14.