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Accurate accounting, or invasion of privacy?

By |2018-01-16T03:10:14-05:00December 23rd, 2004|Uncategorized|

By Dawn Wolfe

On Dec. 8, the State House passed an amendment to the public health code that, if signed by Governor Granholm, will change the law to require that the labs that process HIV and AIDS-related blood tests to report the name, address, and phone numbers of all persons who test positive for HIV/AIDS.
The bill, Senate Bill 1129, also requires labs to report “the name, address, and telephone number of the health care provider who diagnosed the test subject or who ordered the test.”
Michigan Department of Community Health’s HIV/AIDS Epidemiology Manager Eve Mokotoff wrote and championed the bill through the legislature. According to Mokotoff, people who wish to keep their test results anonymous may still do so.
“We didn’t want to remove the anonymous [testing] option,” said Mokotoff. “It could be a political lightning rod, and we don’t want to discourage people from being tested.” Those who wish to be tested anonymously may do so at any of the community-based HIV/AIDS service providers or by specifically requesting that their private physician send in the test to the lab without identifying information.
Mokotoff added that her office already receives full contact information for patients who test positive from HIV from their physicians, unless the patient specifically requests that he or she remain anonymous.
According to Mokotoff, not many people choose that option when getting tested by their doctors.
“My ballpark would be less than 10 percent, but I don’t know how much duplication of information is happening,” she said.
Mokotoff said that the change closes a loophole in existing law, allowing her department to do a better job tracking the numbers of people in Michigan who are infected with HIV.
“Labs were exempted from reporting in order to keep from circumventing the patients’ choice. We weren’t getting any labs [including results from people who had not chosen to remain anonymous]. It wasn’t against the law for them to report, they just weren’t required to do it,” she added.
In a further change, labs will also be required to report the results of tests done to assess the progress of the disease once diagnosed – again with full contact information for the patient, unless he or she requests to remain anonymous.
“The reason we did this,” said Mokotoff, is once a diagnosis is done, the patient may or may not get into care. This allows us to track how many people are and are not in care, given the discrepancy between the number of people who test positive and the number who have subsequent tests.”
Mokotoff said that there are no plans at this time to follow up with patients who test positive for HIV/AIDS but who do not go into care. However, just knowing the difference between the numbers who do and do get treatment for their disease may help the state improve care, she said.
“Lets say we discover that 30 percent of the people who are tested at counseling and testing sites never go back for subsequent tests and care – we’ll need to become far more assertive about educating them and getting them into care,” she said.
The new bill received full support from the HIV/AIDS Alliance of Michigan, a coalition of community-based HIV/AIDS organizations throughout the state.
According to Barbara Murray, president of HAAM and executive director of AIDS Partnership Michigan, the bill will ultimately help community-based organizations if it is signed by the Governor.
“The basic issue here is trying to have accurate data, since federal funding is dependent on that data.”
Murray stressed that the community-based organizations were deeply involved in creating the new legislation.
“We worked on this bill with MDCH and the Michigan State Medical Society,” she said.
In addition to HAAM, the bill was also supported by a number of governmental and professional organizations, including the Michigan HIV/AIDS Council’s People with AIDS Task Force, the Michigan State Medical Society and the Detroit Department of Health and Wellness Promotion.
However, Kendra Kleber, an attorney who advocates for people with HIV/AIDS as well as a past committee member of various statewide HIV/AIDS care planning groups including Michigan’s Statewide Coordinated Statement of Need Committee and the Statewide Comprehensive Plan Committee, has serious reservations about the bill’s affect on privacy rights.
“My concern with this bill is that it instructs that certain sensitive and confidential data be released or reported to the Michigan Department of Community Health as a single entity without distinguishing between which portions of MDCH are involved,” she explained.
“I believe that this bill would better serve its purpose if it had in fact clarified the difference between MDCH-HAPIS [HIV Prevention and Intervention Section] and MDCH-HIV Surveillance [the section of the Department which compiles statistics and data on people with HIV/AIDS in order to support funding requests to the federal government], and made clear which division can get what data,” she continued.
Kleber stressed that she is not concerned about abuse by current Health Department staff, but what she sees as the potential for abuse by future generations of staff.
“Michigan’s officials who are in charge of HIV/AIDS care and prevention services and the epidemiology unit … have been largely respectful of the privacy and confidentiality rights of Michigan citizens. … However, there are no guarantees that the current slate of responsible people will stay in place much longer, and their replacements may not have the same philosophy,” she said.
While Kleber concedes that, “Increased accuracy is important for supporting larger requests for federal funds under the Ryan White CARE Act,” she also questions the portions of the bill that call for collection of personal information from people who undergo follow-up testing to determine their viral loads and white blood cell counts.
“Ostensibly, tracking the [test results] will let Michigan be more accurate in defining when people progress to an AIDS diagnosis, which is the current yardstick by which federal CARE Act funds are awarded to each state. Even though that federal funding formula is due to change soon from counting AIDS cases to counting HIV cases, this reporting change is just now being made and I am not sure why,” Kleber said.
Kleber is also concerned that the bill sets a potentially dangerous precedent by mandating that personal information about patients who test positive for HIV/AIDS be shared with the Health Department.
“Up until now and according to the statutory law, [the Health Department] has not had unfettered access to the names and contact information of people who’ve tested HIV positive at any level, from the initial diagnostic test to client lists at agencies. There has been no statutory authority to support efforts by MDCH-HAPIS to try to see agency client lists, and because there was plenty of statutory authority indicating that MDCH-HAPIS was supposed to be prevented from getting that information, there has never really been a successful attempt to actually see an agency’s files,” she said.
“While this law does not wipe out those confidentiality protections, and it doesn’t address what MDCH-HAPIS is allowed to collect from agencies or health care providers, it certainly undercuts the idea that MDCH as a whole should be kept away from the names of patients,” she added.
Mokotoff doesn’t share Kleber’s concern.
“As I’ve said, we’ve already been getting this information from physicians, and have been doing so for fourteen years,” when the law which would be amended by Senate Bill 1129 originally passed.
Kleber disagrees. “Every effort of the government, at any level, to extend its authority, especially at the cost of the privacy rights of individual citizens, should always be resisted,” she said.
As of press time, the Governor’s office had not yet received the bill. Officials in the Governor’s office said that Granholm will not be taking a position on the bill until she has received and had a chance to study it.
To see a copy of Senate Bill 1129, visit the Michigan Legislature’s website at and enter the bill number. To contact Governor Granholm’s office to express your opinion about the bill, write Governor Jennifer M. Granholm, P.O. Box 30013, Lansing, MI, 48909, or call 517-373-3400.

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BTL Staff
Between The Lines has been publishing LGBTQ-related content in Southeast Michigan since the early '90s. This year marks the publication's 27th anniversary.