HIV-testing consent law moves to the full House

LANSING — The Michigan House Health Policy Committee Tuesday voted unanimously to forward a controversial piece of legislation that will change the way HIV testing is conducted in Michigan to the full House for a vote.

And while the legislation was approved with a promise from the bill’s sponsor, Rep. Roy Schmidt (D-Grand Rapids), that he was open to adding amendments on the House floor, his office appeared to back off on that promise Wednesday morning.

“We’re happy with it,” said Ed Kettle, Schmidt’s chief of staff. Asked if Schmidt would work to amend the legislation to address concerns, he said simply “no.” But someone else could attempt it.

“You never know (if someone will try to amend it on the House floor). I mean anyone can introduce an amendment,” Kettle said.

Kettle’s message directly contradicts the understanding of Health Policy Committee Chairman Marc Corriveau (D-Northville), who only agreed to move the legislation forward because he believed he could work with Schmidt to amend the legislation on the floor to address any concerns.

And Detroit Democratic Rep. Jimmy Womack says Schmidt had already begun discussions with him about amending the legislation to address concerns.

“It’s not what Rep. Schmidt said to me,” Womack said in a phone interview. “We even exchanged cell numbers. And I got a text message from him about this.”

At least one member of the Health Policy Committee, Rep. Barb Byrum (D-Onondaga), said Wednesday afternoon that had she been aware of the concerns about the legislation, reported in the Michigan Messenger on Monday, it might have changed her vote.

“More than likely (this information would have changed my vote). If nothing else it would have given me more pause,” said Byrum. “It’s concerning you’re bringing these issues to light and why they weren’t discussed at all in committee today? What I am going to have to do is contact the bill’s sponsor and find out what’s going on and why these issues were not addressed.”

Members of the HIV-positive community, as well as representatives from Triangle Foundation and the HIV testing community, have opposed the legislation on several grounds. Among those concerns are the removal of required pre- and post-test counseling, “buried” consent for the testing in general medical treatment consents, potential insurance coverage problems, and legal issues related to Michigan’s felony HIV disclosure laws.

In written testimony submitted to the committee, Triangle Foundation’s Bernadette Brown, director of policy, said the group supported the legislation but only with an amendment.

“We come before you today to express our support for the substitute for HB 4583, with an amendment,” the statement said. “Section 5133 (2) requires that the physician or health facility document the provision of patient consent in the medical record. We request that the patient be allowed to also document her or his consent in writing, such as signing or initialing the statement written by the physician (or the relevant health care provider), in the medical record.”

Schmidt’s chief of staff said that request was a no-go.

“All that does is put [the legislation] back where it was,” Kettle said.

Under the proposed changes, a patient will sign a general medical consent which includes permission to test for HIV. If a physician decides to run an HIV test, they will have to get verbal consent before ordering the test and note it in the file. However, a patient is not allowed to verbally decline an HIV test. Patients who do not wish to be tested will be required to put that in writing.

Asked if that requirement were not creating more barriers to people declining the test, Kettle said it was, but that was OK.

“Don’t you think it’s better? That a doctor says, ‘OK you are adult and you are declining this test, I want you to sign something to acknowledge that so I am not responsible, because as your doctor I am recommending the test?’” Kettle said. Michigan law does not require a patient to formerly decline any other medical testing and procedures in writing.

Mark Peterson, a spokesman for Michigan Positive Action Coalition (MI Poz), a group of HIV-positive people and their supporters in Michigan, said the legislation was not needed.

“I think the problem with this legislation is that it is an answer seeking a problem,” he said, noting that hospitals and other medical groups in Southeast Michigan have been complying with the current law, which requires anyone ordering an HIV test to provide a patient with pre-and post-test counseling, as well as sign a specific document on the issue created by the Michigan Department of Community Health.

“It does concern me that we are eliminating that requirement,” said Byrum.

“You’re right, the cumbersome counseling piece is gone,” Kettle said. “There has to be an element of good medical practice that a doctor is going to have an adult conversation about the test before administering it.”

Spectrum Health Systems, which initiated the legislative re-write, has acknowledged that it does not currently have a policy in place forcing physicians system wide to follow the current law. When asked why, Spectrum spokesman Bruce Rossman told Michigan Messenger in April 2009 that the current consent booklet was “an obstacle” to testing.

Kettle says mandating that physicians inform positive patients of the HIV disclosure law will be a “chase away deal” for those being tested. He says informing people that a positive result will put a person in jeopardy of criminal liability will cause them to decline to be tested.

Brown disputed the claim that the counseling requirements dissuade people from being tested: “One claim is that counseling and informed written consent is a barrier to testing. We are unable to find any systematic, peer reviewed studies demonstrating that informed written consent by the patient (or counseling by the health care provider) is a barrier to testing.”

And Kaye McDuffie, an HIV-testing counselor and health educator in Lansing, says studies have shown that the pre-and post-test counseling sessions are important tools in prevention. She says without those counseling sessions, patients with risk factors are more likely to continue to engage in those behaviors.

Peterson also expressed concern that many people who test positive in a clinical setting may not get referrals to infectious disease specialists.

“We know that the average for people who are not given access to patient services in delaying access to treatment is about two years,” he said.

Grand Rapids resident Ellen Roelofs, 23, is a member of MI Poz. She says in an e-mail to Messenger her access to care was limited after she was diagnosed in 2003 by the Kent County Health Department.

“I got tested at Kent County Health Department,” she said. “[The] County did not give me a direct referral or tell me what I needed to do to get in care, what they did was gave me a packet of fliers and pamphlets which, I believe, had info about McAuley (the local clinic) in it. I didn’t know what to do with my enormous packet of strange and foreign agencies, terms, etc, and ended up just making an appointment with my family doctor. The family doctor wasn’t very knowledgeable about HIV, but gave me the name of McAuley – no phone number or address, no call from his office to theirs or anything like that; he just told me the name, and it took me 3 months or so to actually find McAuley’s contact info and set up an appointment for myself. I would have pursued it faster myself if I had perceived an immediate threat to my health at the time, but either way, it was a bit more difficult than it should have been. I was a minor at the time and really should have been given an appointment with a case manager when I got my results. And no one told me about the felony law until a couple years after that.”

“That example,” says Womack, “is why people need to be counseled. There has to be some post test counseling.”

Supporters of the law say routinizing HIV-testing is a good thing for the state and public health. They compared the revisions in state law to making HIV-testing similar to testing for cancer or diabetes. Schmidt’s chief of staff Kettle echoed that reasoning in a phone conversation.

But McDuffie says there are key differences between finding out you are HIV-positive and having cancer or diabetes.

“You can’t do that without training the medical providers and personnel, because whether people want to believe it or not, HIV and AIDS is not like other diseases — in terms of stigma, in terms of discrimination, in terms of feelings of hopelessness that many people feel when they are initially diagnosed,” she said.

Triangle Foundation has also noted that in its annual hate crimes report due out next month, the advocacy group for lesbian, gay, bisexual and transgender people, will announce that Michigan saw a 55 percent increase in the number of HIV related discrimination complaints in 2009 over 2008.

In addition to the emotional impact of the diagnosis, being HIV-positive exposes a person to the possibility of criminal liability. No other disease in Michigan carries that kind of liability. Current law mandates that public health officials inform those who test positive for the virus about the law, but it can often take weeks or months for a specialist to contact a person with a positive result.

Meanwhile, members of the committee that voted for the bill are complaining that they did not get all the facts before the vote.

“The testimony was that the only change was the form that was going to be signed,” says Byrum. “It’s very unfortunate because it seems as though you are bringing up points that were never discussed in committee today, which is very concerning to me.”