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FEDS INCREASE PRESSURE FOR HIV REPORTING

This article appeared in this week's "fastfax", the weekly news update from We The People Living with AIDS/HIV, Philadelphia. [http://www.critpath.org/wtp] Subscribe to: wtp@critpath.org

With legislation pending in Congress which would force states and municipalities receiving federal funds to require that those who test positive for HIV infection be reported to local surveillance offices, the U.S. Centers for Disease Control has stepped up its pressure on local health authorities -- including Philadelphia's AIDS Activities Coordinating Office -- to begin planning to legally require reporting of HIV+ people. New Jersey, which includes four counties which are part of the Philadelphia AIDS services region, has required HIV reporting for several years.

In a survey sent by the CDC to all 50 states and many cities, the agency asks local health authorities to begin developing plans for initiating HIV reporting in their communities. The survey also asks when the communities will be ready to require HIV reporting, with indications that they hope all cities and states will implement the new requirement by next summer. In Philadelphia, only a diagnosis of AIDS is reportable. The number of people who test positive for HIV antibodies is, then, unknown to public health officials and advocates.

To date, city officials have relied on federal estimates of how many HIV+ people there are in the region, which are based on formulas which project levels of HIV infection from the numbers and demographics of those being diagnosed and reported with AIDS.

The city's AIDS surveillance system records the name, address, and medical and personal information on each person diagnosed with AIDS. The reports are submitted, under a requirement of the Philadelphia City Charter, by doctors, clinics, and hospitals, and are sometimes identified by city "surveillance officers" from analysis of hospital records and death certificates filed with the city. AACO, which receives the reports, then codes the identities of those whose diagnosis is reported and submits the data to the CDC.

It was unclear whether the CDC will expect that the full names of HIV+ people be reported under the proposed new rules. Most local AIDS advocates have traditionally opposed reporting of HIV infection, claiming that the only reason why public officials seek the authority is because it would provide data which would increase the ability of the city to compete for federal and state AIDS funding. They say that benefit is outweighed by the need for confidentiality of HIV test results, citing studies which indicate that almost one in five people being tested for HIV say that they would be less likely to get tested if their name was going to be reported.

Other activists have been critical of the claim that identifying those who test HIV+ to the government would increase their opportunities to obtain medical care. They say that without more resources being allocated to help people newly diagnosed with HIV infection to link to ongoing medical care, little is actually done to make sure people get access to early intervention services. Anna Forbes, a local AIDS activist, wrote in The New York Times in August that data from a Centers for Disease Control and Prevention study indicated that almost 20 percent of high-risk individuals cite fear of giving their name as a reason to avoid testing. In the Philadelphia region, most of those seeking testing at publicly funded sites are required to give their name to the test counselor, but the information is not transmitted to other public agencies. Some anonymous test sites remain open in the Philadelphia area, and it was unclear whether the new reporting efforts of the CDC would allow for continuing anonymous testing. Most funding for public HIV counseling and testing programs is provided by the CDC.

Forbes also challenged the assumption that reporting names will make it easier to ensure that HIV-positive persons receive follow up treatment. The same CDC study, she said, found that people with HIV got into care as quickly at locations where names were not used as at those facilities where names were given.

Forbes asserted that code reporting -- that is, assigning a "unique" identifier to the person instead of their name -- is a more effective measure for keeping track of cases. Forbes notes that Maryland, which follows trends in HIV infection, has attained 97 percent completeness in reporting through this procedure.

Philadelphia and Pennsylvania officials have refused previous attempts to pilot code reporting projects to see if they would be effective in this region. A proposal to test a code reporting program submitted by Forbes to the city several years ago was rejected, as was a similar proposal submitted by We The People to the American Foundation for AIDS Research in 1994. A city proposal to require name reporting of low CD4 counts by area laboratories was suspended by health commissioner Estelle Richman in 1995 after community protests; Richman also rejected proposals that the city test a coding system for the reports.

Recent press reports have indicated, however, that as AIDS treatment advances continue, the privacy concerns that have long set HIV-infection apart from other infectious diseases such as tuberculosis, gonorrhea, and syphilis have begun to fade.

Elected officials, health professionals and a growing number of advocates for people with AIDS are changing their positions regarding mandatory testing and notification that have long been used by medical practitioners in slowing the spread of other infectious diseases. New drug therapies have made early HIV detection and treatment more beneficial than ever before, and public officials are giving higher priority to utilizing their AIDS resources to help people living with HIV obtain primary medical care. For those reasons, AIDS specialists and public advocates that fought tooth and nail in defense of privacy rights are now coming around to see that, all things considered, such rights may no longer be in the patient's best interest. The AIDS Action Council, which represents more than 1,400 AIDS service agencies across the country, is in the process of reviewing its opposition to states which demand all positive HIV results be forwarded to public health departments.

"It's time to recognize that the earth has shifted underneath all of us fighting the AIDS epidemic," the Council's executive director, Dan Zingale, said.

In all, 28 states now have mandatory HIV reporting. However, that these states account for only 24 percent of the cases reported to the CDC. Of the 10 with the highest number of reported cases, only New Jersey and Louisiana have adopted HIV reporting.

One of the principal forces behind the new shift in thinking has been the CDC, which has become much more vocal in advocating nationwide mandatory HIV reporting in the last six months. Dr. John Ward, who heads the CDC's HIV-AIDS surveillance branch, said "We are in an era where there is more of a compelling need for HIV surveillance than 18 months ago."

Planning vaccine research and targeting scarce resources -- be they preventive, service-oriented, or medical -- to new areas where infections are on the rise are just some of the benefits mandatory reporting would advance, he said.

Cleve Jones, founder of the NAMES Project AIDS Memorial Quilt, told the Times, "Everything is changing so rapidly right now that most of us are in a position of having to re-evaluate everything we held to be gospel for many years."

 

(Some information in this article was obtained from the New York Times and the Bulletin of Experimental Treatments for AIDS.)

 

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See also:

Congressional Legislation (The Coburn Bill)

What's Wrong with Coburn's Contact Tracing and "Routine" Testing?

The Myths of Names Reporting

The Nushawn Williams Media Frenzy