Friday
December 02, 2005
SGN.org
Volume 33
Issue 48
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Saturday, Nov 21, 2009
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State considers return to name-based HIV reporting |
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| State considers return to name-based HIV reporting | ||
| "This is another policy coming down from the federal government that seems to make no sense whatsoever," said Fred Swanson, executive director of Gay City.
By Robert Raketty - SGN Staff Writer The State Board of Health will likely abandon a 1999 compromise with AIDS advocates, which allowed for a name-to-code system for the reporting of asymptomatic HIV cases. Instead, the rule-making body is expected to adopt a name-based reporting system by June that could affect as many as 4,000 HIV-positive people statewide whose information had been encoded to ensure their privacy. According to John Peppert, manager of the HIV prevention section of the State Department of Health, as much as $5 million dollars in federal assistance that the state uses for medications, food, housing and other services for people with HIV may be on the line, unless the state follows the CDC's preferred reporting requirements. As of June, 43 states and local health departments used confidential name-based reporting, while 14 state and local health departments, such as Washington, use code-based or name-to-code HIV surveillance systems. The Board of Health had unanimously voted to enact name-based HIV reporting on July 14, 1999, but later reached a compromise with AIDS advocates after facing fierce resistance and a lawsuit filed by a group called Resist the List, who formed to organize opposition to name-based HIV reporting. The states largest AIDS service organizations at the time, including the United Communities Against AIDS Network in Olympia; the Northwest AIDS Foundation in Seattle; the Pierce County AIDS Foundation in Tacoma; the Spokane AIDS Network in Spokane; and People of Color Against AIDS Network all favored a code-based or name-to-code system. Former Governor Gary Locke's Advisory Council on HIV/AIDS also voted 14 to 4 in favor of using coded identifiers. "The community was mainly against names-based reporting and strongly favored a name-to-code option," remembers Sally Clark, a long time AIDS advocate and current director of community resources at Lifelong AIDS Alliance. According to Clark, Lifelong is still putting together its position on the issue and has many questions the organization hopes to have answered. "We really want to make sure that the actions of Public Health and the Board of Public Health don't drive anyone away from testing," she said. Fred Swanson, executive director of the Gay City Health Project, had similar concerns. "The concern is that people will interpret the change to mean that they can no longer seek testing anonymously," he said. "Even though - technically - anonymous testing will still be available and we will still be doing that, I am concerned that people will perceive that there has been a shift and perceive that they won't be able to get anonymous testing and, as such, won't access testing as readily." POCAAN Operations Manager Kiande Jakaba said that name-based reporting is one more hurdle for minority communities who often lack access to services due to language and cultural barriers or distrust of the government. "This is another thing that may deter people of color from getting tested," he said. "There is a lot of stigma that comes with being positive. A lot of our communities don't necessarily have positive conversations about HIV, sexuality and drug use and all the things associated with that. Those people tend to be cast aside. So, it is going to be an issue for them." Peppert said their concerns are understandable, but may be unfounded. First, public health officials only get the name of an individual when they seek out medical care or take a confidentials test, not from community based anonymous testing sites such as Gay City's Wellness Center. Second, the majority of HIV cases are already retained by name and those names are kept by the state, not the federal government. Third, studies suggest names-based reporting is low on the list of reasons people do not test for HIV. Resist the List Co-Founder Michael McAfoose says privacy concerns are foremost in his mind. He cited a situation in Palm Beach County, FL, last February when a health department employee inadvertently e-mailed the names and addresses of 6,500 HIV-positive people to more than 800 other county workers. "I do have concerns that a list like this could be misused by government agencies, police, insurance companies and employers," said McAfoose. "With the internet and technologies the way they are today, this provides an opportunity for abuse. Efficiency of the government should never be promoted over ones right to privacy." According to Peppert, during the 20-year-history of the state's HIV surveillance system, there has never been a breach of privacy. "We have got very strong, principled, recommendations that we have to follow," he said. "The names are contained in locked files, in locked rooms, on a locked floor and in a locked building. If any data is kept on a computer, it is separate from any network." For the last six years, the CDC has refused to count our states HIV data. In a letter last July, CDC Director Julie L. Gerberding wrote: "CDC's policy is to report HIV infection and AIDS case surveillance data only from areas conducting confidential name-based reporting because this reporting has been shown to routinely achieve higher levels of accuracy and reliability." However, Swanson disagrees. He believes the current system works well and wonders why a change is needed. "The CDC is basically forcing this. We can go to the public hearing and we can testify, but the funds are contingent on this for Ryan White dollars," he said. "It is unrealistic to think that the State of Washington will take a stand and say, 'We will give up all our Ryan White CARE dollars or prevention dollars because we think this thing is stupid.' This is another policy coming down from the federal government that seems to make no sense whatsoever." A public hearing on the proposed changes will be held at Seattle Central Community College on Monday, December 12, from 7 - 9 p.m. in Room 3211. The stakeholder meeting is open to the public. Representatives from Gay City and Lifelong AIDS Alliance are expected to testify. |
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