January 30, 2012 -- New HIV screening rules coming before the February session represent a complete turnaround in the strategy of advocates for people suffering from the 30-year-old virus causing immune system deficiency.
To protect HIV patients from discrimination, state lawmakers in the 1990s passed a series of laws that now require special forms for consenting to an HIV test and extra layers of bureaucracy for transferring HIV-related patient data. Under proposed legislation, patients would no longer have to give specific informed consent for an HIV test.
No one is suggesting that HIV diagnosis data should be traced to individual HIV patients without their written permission. Also, a healthcare provider would still need to notify their patients to receive consent for testing under Senate Bill 1507; the notification and opportunity to decline testing may be verbal or in writing, and it may be contained in a general medical consent form.
For sponsoring nonprofit Cascade AIDS Project leaders to have supported loosening these rules even five or 10 years ago would have been impossible. Founded in 1985, CAP is the oldest and largest AIDS service organization in Oregon and Southwest Washington, with 50 employees, 18 board members and a $4.6 million annual budget.
“As an agency we’ve moved because we know that there are many more options for treatment, there’s much less stigma and, most importantly, that testing is the best way for us to combat the disease,” said Michael Kaplan, CAP’s executive director since 2008.
Kaplan joined the movement as an activist for HIV awareness when he was diagnosed with the disease in 1992 and helped run related nonprofits for 16 years prior to joining CAP.
“In my long history of actions, I was never part of those movements to restrict HIV information because I always believed that the more openly we were able to operate, the more we could prevent both the disease and its related stigmas,” he said. “The stigma is much, much less these days, but back then many HIV activists tried to put in as many restrictions as possible to try to protect their community from backlash.”
Paul Cosgrove, a founding member of Oregon’s Public Health Institute who will lobby in favor of the bill, remembered how much the attitudes have changed since the beginning of the epidemic. There was such a concern about the ability for HIV patients to lose their housing and employment as a result of discrimination, Cosgrove recalled, that there were a lot more regulations put on the information for HIV tests and HIV patient data, far more than other types of equally sensitive information such as mental health issues.
“As we push to get people into treatment early, there’s the potential that this bill might eventually move this HIV information into the same category as any other type of medical information,” Cosgrove said. “As the disease and our ability to treat it continue to evolve, it’s important that we continue to evaluate theses rules.”
CAP’s board of directors is behind the informed consent rules, representing a shift in the organization as a whole. Its mission is to prevent HIV infections, empower people affected by HIV/AIDS and eliminate HIV/AIDS-related stigma.
Getting rid of the stigma used to mean shielding HIV patients as much as possible, but now those rules stand in the way of stopping the spread of the disease. Federal authorities still define HIV as an epidemic with 56,000 people becoming infected each year and more than 1.1 million in the U.S. living with HIV. Citing early treatment and awareness as the No. 1 tool for stopping the spread of HIV, the Centers for Disease Control and Prevention estimate that one in five people with the virus don’t know they are infected.
“We support getting there to be as few barriers to HIV testing as possible, as long as someone knows they’re getting tested,” Kaplan said. “But what actually got this rolling was not from the perspective of patients having trouble getting treatment but from the perspective of Providence [Health] trying to introduce routine HIV screening and running into lots of barriers getting the right paperwork.
Drs. Christina Baumann and Andy Seaman are the physicians who started the screening project to which Kaplan refers, but they did so as an independent partnership and not at the level of their respective institutions, OHSU and Providence.
“Especially in an area like the ER, it’s so prohibitive to require a full consent process that’s the same as what’s required for surgeries,” Seaman said.
“This bill only targets HIV-specific informed consent, and we’re not going after confidentiality rules surrounding HIV patient data,” Baumann said as further clarification.
Cosgrove said momentum is already on the side of the new rules in Oregon, with laws having already gone into place for pregnant women to receive testing and other states lacking extra informed-consent rules for HIV altogether.
“It’s well known that every pregnant woman should get an HIV test, but it was a whole extra process for them to get those tests, and many of them ended up skipping them altogether,” he said.
In introducing the latest bill, Sen. Laurie Monnes Anderson (D-Gresham) “declared an emergency” on the problem, which is a provision that would make the legislation effective immediately after its passage. Monnes Anderson, as chair of the Senate Interim Committee on Health Care, Human Services and Rural Health Policy, had the rules vetted by a bipartisan group that included Sens. Alan Bates (D-Medford), Jeff Kruse (R-Roseburg), Frank Morse (R-Albany) and Chip Shields (D-Portland). Monnes Anderson, a former nurse, and the other committee members have had success in advancing healthcare policy legislation in Oregon.
