Latino AIDS Agenda

Bienestar and the Latino Commission on AIDS have created a website LatinoAIDSAgenda to serve as a point of reference and to collect documents that have been developed regarding Latinos and HIV/AIDS. Their attempt is not to reinvent, but rather to review what has been created and develop an agenda, but most importantly a Plan of Action with short term and long term goals.

Bob Hattoy Celebration

Housing Works Reception

NASTAD Reception

Sometimes You Need To Laugh

HIV patient names to be tracked in all 50 states by year's end

The Associated Press
Published: April 1, 2007

CHICAGO: The names of people infected with HIV will be tracked in all 50 states by the end of 2007, marking a victory for federal health officials and a quiet defeat for AIDS advocates who wanted to keep patients' names out of state databases.

Vermont, Maryland and Hawaii, the last states not tracking the names of HIV-positive people, are quickly moving toward adopting names-based surveillance. Eight other states and Washington, D.C., began collecting the names of HIV patients last year, and Massachusetts switched in January.

The states are bowing to federal pressure so they will not lose money for medications and health services for patients.

This is the first year federal funding has been tied to names-based surveillance of HIV. More than $1.4 billion (€1.05 billion) in federal money will be distributed this fiscal year based on new formulas that include numbers of people with HIV counted by states using names. In some states, including Illinois, millions of dollars are at stake.

That is why advocates say they have quit fighting — although they still worry that collecting names will deter some people from getting tested and seeking treatment, and about the possibility of names being released due to security breaches.

"I have patients who are very high-profile individuals — physicians in practice, people who are politicians" who don't want their real names reported, said Dr. Dan Berger, medical director of NorthStar Healthcare in Chicago's Lincoln Park.

In a 2005 security breach in Palm Beach County, Florida, the names of 6,500 HIV and AIDS patients were mistakenly e-mailed to 800 county health workers. Other security breaches have occurred in California and Kentucky.

Some worry that names-based reporting could have the greatest effect on whether minorities and the poor get tested and treated because they may be less likely to trust the government to keep their names secret.

In a low-income Chicago neighborhood 10 miles from Berger's office, patients now are told they must release their names to the state to get medications. Bruce Jackson, director of the Gift House, which offers HIV testing and counseling in southwest Chicago, said some clients are apprehensive, fearing their families or friends will find out they're infected.

Reporting names "can affect if (disadvantaged people) come back for care and it can affect how they describe to other people their experience of getting tested," said Catherine Hanssens of New York's Center for HIV Law and Policy.

There are an estimated 40,000 new HIV infections annually in the United States.

Methods of tracking cases varied from state to state until recently. Some states, including Illinois, and the city of Philadelphia previously tracked HIV with identifying codes that preserved anonymity and were unique to each patient.

The U.S. Centers for Disease Control and Prevention rejected code-based systems after finding they could lead to double-counting and were cumbersome for health care providers. The CDC announced its support for names-based HIV reporting in 1999, and strengthened that to a recommendation in 2005.

"After many evaluations of code-based systems, it became clear that those systems do not meet CDC standards for HIV data," said Dr. Timothy Mastro, deputy director of the Division for HIV/AIDS Prevention at the CDC. Diseases such as syphilis, tuberculosis and AIDS already were tracked by patient names, he said, making HIV the exception.

Starting this fiscal year, the CDC's HIV numbers were used, along with AIDS case numbers, by the U.S. Department of Health and Human Services to calculate funding to cities and states receiving formula grants through the Ryan White CARE Act, the government's largest HIV/AIDS program. The formulas include only HIV data from states using names-based surveillance.

AIDS advocates, who argued against collecting names of HIV patients in the 1990s, preferred code-based systems to protect the confidentiality of patients and said the CDC ignored evidence that codes could work.

"I've not so much changed my opinion as surrendered," said Ron Johnson, deputy executive director of Aids Action in Washington, D.C. "I still believe code-based reporting is valid and is preferable for HIV reporting. It, for all practical purposes, has become a losing battle."

For now, public health officials are trying to reassure people who test positive for HIV that stiff security measures protect state databases of names.

In Illinois, staff members handling names take an oath of confidentiality and get special training. The names are in a stand-alone computer system, behind locked doors.

"I've never been in that room where they're kept. The security is that tight," said Tom Hughes, a deputy director with the Illinois Department of Public Health.

Participating states strip names and other identifying information from their HIV reports before transmitting them in an encrypted form to the CDC, Hughes and other health officials said.

Berger, the Chicago doctor, said he has told some patients not to give him their real names. He has enrolled patients anonymously in medical studies of HIV drugs without reporting their names, he said.

Health officials said it is impossible to predict how many doctors and patients are finding ways of keeping names out of databases, and whether HIV case numbers will show any decline that can be connected to names-based reporting.

With better drugs forestalling the progression of HIV to AIDS, people with no apparent symptoms face knowing their names will be on a state list for decades — protected by security measures, but nevertheless subject to exposure.

"In many ways, it's a different world today than the world that motivated people to insist on anonymous systems for tracking HIV," said Suzanne Goldberg, director of the Sexuality and Gender Law Clinic at Columbia Law School in New York. "A lot has changed, but unfortunately not enough.

Tommy Thompson to Run for President

Former Wisconsin Gov. Tommy Thompson on Sunday joined the crowded field of Republicans running for the White House in 2008 and proclaimed himself the "reliable conservative" in the race.

Thompson, who was health and human services secretary during President Bush's first term, also said he is the only GOP candidate who has helped assemble both a state and federal budget.

Former Wisconsin Gov. Tommy Thompson speaks to Quad City area citizens gathered at Kelly's Irish Pub in Davenport, Iowa, Saturday, March 31, 2007. (AP Photo/The Associated Press, Louis Brems) (Louis Brems - AP)

Since announcing last year he was forming a presidential exploratory committee to raise money and gauge support, Thompson has lagged behind better-known rivals.

Thompson, 65, has focused his strategy on Iowa, which holds the nation's first caucuses for presidential nominees. He has made weekly visits to the state and sought to make the case that it will take a candidate who can carry the Midwest to win the nomination.

"Things are started to coalesce and I feel very, very optimistic about my future," Thompson said Sunday, despite his single-digit polling.

"I am the reliable conservative. My record shows that. All that people have to do is look at my record, and I am one individual that they can count on," Thompson said.

Discussing some campaign issues, he said:

• He would have "a completely different Iraq strategy" from the president's. Thompson said he would "demand" that the Iraqi government vote as to whether it wanted the U.S. to remain in the country. If the answer were yes, "it immediately gives a degree of legitimacy." If the answer were no, "We would get out, absolutely. It's a duly elected government."
• He would veto the war spending bills in Congress that have timelines for a U.S. exit from Iraq. "This is an invitation to continue the kind of civil war that's going on right now. I think it's the worst mistake," Thompson said.
• Attorney General Alberto Gonzales has made "terrible mistakes" in the handling of the fired federal prosecutors. "I would not have appointed Mr. Gonzales. I would have appointed somebody that was loyal to me," Thompson said.

At a recent news conference in Wisconsin, Thompson called himself "the dark horse candidate. I was a dark horse candidate for governor. I was a dark horse candidate when I ran for the Assembly. I am the underdog, and I don't mind that."

The son of a grocer, Thompson spent 14 years as governor of Wisconsin, pushing for an overhaul of the state's welfare laws. He also championed a school choice program for Milwaukee.

His time in Bush's Cabinet included anthrax attacks, a flu vaccine shortage and passage of the Medicare prescription drug benefit law.

In 2006, he briefly flirted with the idea of running for governor but in the end decided not to seek his old job. He had considered running for president in 2000 but scrapped that, too, deciding he lacked support.

The leading GOP candidates in the race include former New York City mayor Rudy Giuliani, Arizona Sen. John McCain and former Massachusetts Gov. Mitt Romney.

Thompson was interviewed on "This Week"