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Vermont's AIDS service organizations face cuts in funding unless they agree to a procedure some believe would compromise client confidentiality.
The Vermont Department of Health informed ASOs last month that new clients can no longer opt to keep their files from being reviewed during state inspections of agencies' offices.
Organizations may still allow new clients to restrict state access to their files, but will no longer be eligible for the annual $1100 per-client administrative funding for such clients.
Some ASOs and HIV/AIDS consumer organizations oppose the change, saying that clients should have the option of restricting access to the sensitive information often contained in their files.
Many feel that allowing state employees to read their files threatens their privacy. This fear is especially prevalent in Chittenden County, where the state's reviewer is based.
This potential for breach of confidentiality was raised by the Vermont People with AIDS Coalition after the DoH's September, 1998, site visits. Chuck Kletecka of PWAC acknowledged that the reviews are intended for quality assurance, but expressed concern that "people didn't know that their charts might be reviewed."
Clients of Vermont CARES, Chittenden County's primary ASO, may be those most affected by the policy change. Executive director Tim Palmer said, "Our work is very much about empowerment; our clients are very active in the community. Imagine being in a meeting with a state employee who just read your case record."
In December, 1998, the Department of Health responded to privacy concerns by allowing ASOs to ask client permission for departmental review of each file. Agencies were assured that even those denying access would be counted for funding purposes.
The new policy maintains the department's funding commitment to clients who have already denied state access. But, new clients who refuse permission will not be counted in future corresponding funding calculations.
The change comes on the heels of a legislative battle over medical records reporting. Despite the DoH's push for names reporting in HIV/AIDS cases, the Vermont legislature recently approved a unique identifier system designed to protect clients' anonymity.
The funding change "strikes me as a circuitous route to gain access to the names of people with HIV," says Palmer. "It is unfortunate that the state has decided that the only way a person with HIV can gain access to services is by giving up the right to privacy and confidentiality."
Hinesburg representative Bill Lippert said Vermont law is sketchy on medical records confidentiality, but felt legislature made its preference clear in the past session. "If there's any intent to use this as a way to circumvent the legislative decision, it's an outrageous breach of policy and authority," said Lippert.
Vermont state epidemiologist Peter Galbraith said it is not clients' names the department is after. "We don't require ASOs to provide us with names of clients," he said. "ASOs have the option of blocking out names and other personal identifiers in a file."
But that's not a realistic option, say the ASOs; photocopying each file and blacking out anything that might identify a client could provea serious drain on agency resources. "I would have to have a staff person dedicated solely to that process and still couldn't guarantee that all identifying information was removed from each file," said Palmer.
Galbraith maintains that the Department of Health's bottom line is, indeed, the bottom line. "In order to assure financial accountability in all the programs we fund, we perform audits during which we review the case load," he said.
ASOs are still hoping for a departmental change of heart. An official statement from a June 28 emergency meeting of the Vermont CARES board of directors declared they would "continue to seek to resolve this issue in a way that protects the confidentiality and privacy of people with HIV and AIDS."
