Critics, supporters voice concerns on state HIV surveillance

When Colorado Department of Public Health and Environment officials proposed a new system for collecting information on cases of HIV/AIDS they envisioned enhanced statistical monitoring of the epidemic and greater coordination of services to people living with the disease.

But when pushback from advocates for people with AIDS and community agencies funded by CDPHE was so strenuous, the state health department backed off. The new system was too intrusive into confidential client records, said advocates. Instead of imposing the new data collection system known as ARIES, officials began a process of community input on those concerns.

“We’re a government agency,” said Ralph Wilmoth, head of CDPHE’s HIV section. “We really do make an effort to do things in a public way.”

But anxiety has not lessened over confidentiality issues as demonstrated at a Dec. 5 community forum organized by CDPHE.

Conceding that the present system of HIV care is broken and has failed to halt the epidemic, opinions ranged from claims that CDPHE’s proposal would set matters back even further to claims that the new data system is necessary to improve prevention and care.

Much of the discussion focused on what medical and client records state health officials have legal access to in order to monitor the epidemic and identify individuals who might infect others.

But Thomas Montague, speaking for himself, rejected that approach. “Regardless of what the law says we can or can’t do, this prevention strategy is not working. We need to rethink this,” he said. “Doubling down on a failed policy (surveillance) isn’t going to work.”

Attendees voiced concerns over how much data is necessary for CDPHE to have, what is done with all the information, and what happens when there is a security breach on personal data. One fear is that people with HIV—many of whom are not now getting care—will abandon the system entirely, effectively shoving the epidemic underground. “We could go back in time to where it is difficult to engage HIV people at a time when we’re trying to expand care,” said one.

“Why isn’t the present prevention strategy working,” asked another. “Because of fear, shame and intimidation, there’s an avoidance of testing and care resulting in the virus not under control.” He pointed out that people are less infectious when they can keep the HIV virus controlled through medications.

Ralph Wilmoth pointed out that Colorado’s practices are consistent with those of many states and that federal funding requires more rigorous reporting of client data.

Dr. Mark Thrun, community activist and head of Denver Health’s HIV prevention program, supported the implementation of ARIES. “The concerns expressed here today point out why we need ARIES or something like it,” he said. “We’re doing a horrendous job because of uncoordinated systems of care. We need a better coordinated system of sharing data.”

Thrun agreed that confidentiality concerns need to be addressed, but, he said, “The department (CDPHE) has extensive protections for confidentiality and what’s being proposed doesn’t loosen those protections. What the community needs to be concerned about is that we’re failing and we need a coordinated system to stop the epidemic.”

Bob Bongiovanni of CDPHE stated that the purpose of the ARIES reporting system is not surveillance through the state’s Disease Investigation Service which deals with public health threats. Those cases, he said, are few in number—perhaps 50 a year—out of the thousands of HIV cases in Colorado.

Rather than policing individuals, he said, “State intervention can open doors for people who aren’t aware of care opportunities and improve linkage to care.”

Women’s community activist Barb Cardell told the forum, “We need to change. We need to work together in this state so people feel safe sharing information and we can move forward with good intentions. We need to do something different.”

For now, said Bongiovanni, nothing will change immediately and state contracts will continue as they are with no reporting of personal identifiers. More forums are planned in the near future. For information on CDPHE programs and updates on forums, go to www.stdhivco.org.