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Boldly going where no one has gone before
Michigan HIV News, Winter 2003 Issue
 Those of you who have never met Eve Mokotoff probably think epidemiology is
dull. Here is a woman who needs no caffeine to jump-start her day. And it’s an
early start to get to her office in the Herman Kiefer Health Complex in Detroit
from her home in Ann Arbor.
Mokotoff has been with the Michigan Department of Community Health (MDCH)
HIV/AIDS Surveillance Section for 17 years now, and the chief of HIV/AIDS
Epidemiology for eleven years. She came to MDCH just after Michigan reached the
Centers for Disease Control and Prevention (CDC) quota of 80 cases of AIDS to
receive funding for active surveillance. “I have more seniority than most any
other person in the country,” she said.
People in Michigan are used to “just calling Eve” to get their HIV/AIDS data.
But most don’t realize what a wealth of data there is here in Michigan. While
not one of the top five morbidity states in the nation, Michigan is one of only
four national sites that have had both of two primary surveillance studies – ASD
and SHAS (see Studies) – going on since the beginning
(1989-’90). There is now a CDC database that merges the data from ASD and SHAS,
and Michigan contributes about half of it, Mokotoff said.
Thanks to her and the HIV/AIDS Surveillance staff, Michigan got in on the ground
floor with several studies and remains on the cutting edge of national
surveillance. She has 17 professional journal published studies, with two more
going to print this year.
At the moment, Mokotoff is focused on getting lab-based HIV reporting in
Michigan. Michigan has had name-based HIV reporting since 1989.
In fact, name-based HIV reporting is one of CDC’s criteria that have allowed
Mokotoff to get CDC funding to do all of the supplemental studies that her staff
is doing. Even among the high morbidity states – California, New York, New
Jersey and Florida – only New Jersey has had a long-standing HIV reporting
system she said.
But the Michigan system is clinic-based, which means surveillance must rely on
the data collected and reported only by testing sites and clinics – not the
testing labs. At the time HIV reporting was initiated, the reporting by a few
clinical sites was workable.
“We integrated HIV into our AIDS reporting system and did it clinically-based.
Instead of getting a report from the lab we would go to the same doctors we went
to for AIDS (reporting) and got HIV (reports), which worked ok in the 80’s,”
said Mokotoff. “But as things got more decentralized this has become more of a
problem. Because you can’t just go to 12 ID docs (infectious disease
specialists) in the state and know that you are getting all of the cases,
testing happens in lots and lots of places now.”
Some labs are now voluntarily reporting to MDCH and when the staff follows up
with clinics they find that the clinics assume that the labs are reporting HIV
results (as they do with every other reportable disease), so the clinics don’t.
Lab-based reporting is just more accurate, more complete reporting of HIV for
surveillance purposes says Mokotoff.
One of the biggest national involvements at the moment for Michigan’s HIV/AIDS
Surveillance staff is the Institute of Medicine’s evaluation of the national HIV
reporting system for Congress. Michigan is one of 10 states funded by CDC to
participate in this evaluation, which was requested because Congress wants to go
to an HIV database formula for Ryan White CARE Act funding sometime in the next
few years.
“Having AIDS as the basis (for Ryan White funding) in 2003 to me is rewarding
failure,” said Mokotoff. If you view AIDS as something preventable, “if you are
doing your job” getting people into care as quickly as possible and trying to
prevent AIDS “you get less money then.” But Congress couldn’t base Ryan White
funding on HIV data at the last reauthorization in 2000 because there is no
national HIV reporting system.
The STARHS Project
Even more “pivotal to keeping surveillance data useful,” the CDC pilot STARHS
project
(See Studies), will provide incidence data. The STARHS assay, when run on the
HIV test sample, has the ability to tell whether or not the infection occurred
in the last six months.
The standard HIV antibody test tells whether or not a person is infected, not
when they were infected. Someone who tests positive could have been infected for
years. The incidence data obtained from STARHS will detect new infections, “not
just new diagnoses.”
Michigan is one of five sites working with CDC this year to pilot implementing
STARHS with routine surveillance. This is the big CDC project that Ron
Valdisserri, Deputy Director, National Center for HIV, STD & TB Prevention at
CDC talked about in his keynote address at the November STD& HIV conference in
Novi. “CDC is under tremendous pressure to get incidence data because without
it, you don’t know whether prevention is working,” said both Valdisserri and
Mokotoff.
“Every single HIV report we get in,” when there is no known history of HIV with
the individual, “we will run a STARHS test to see if it’s a new infection or
not,” said Mokotoff.
The Epi Profiles
OK. So we have an abundance of great surveillance data here, but what good is it
and to who? The Michigan HIV/AIDS Epidemiology staff just happens to be on the
cutting edge with epidemiology ‘epi’ profiles also. Mokotoff credits former
staff member, Jim Kent for this. Kent is now her national colleague working with
the Seattle, King County Surveillance team in Seattle, WA.
“Very early on, in ‘95 or ‘96 we started working on the (epi profiles). I’d say
our profiles got good in ’98, when we started using the format we have now –
basing the profiles on behavior and not data systems,” said Mokotoff. It used to
be “the ASD data tell you this, the SHAS data tells you this…Prevention people
don’t care about that. (They’d say) ‘Tell me the data you have on MSM, tell me
the data you have on IDUs. I don’t care what data source it came from.’
“We made that big change in ’98, mostly due to Jim’s perspective - being in
Lansing.” Mokotoff said he could see from early on what people around the state
wanted and needed from the epi profiles. “We also realized that although it is
the prevention program that requires the profiles, the people planning care
programs need these data too. Se we integrated the profiles to be useful for
both prevention and care.”
Kent worked with (HAPIS’s) Becki Bishop to match the URS (Uniform Reporting
System) data to HARS (HIV/AIDS Reporting System), and he put TB data in there as
well.
“CDC has been working with HRSA (US Department of Health and Human Services,
Health Resources Service Administration) - finally - over the last year (or so)
to come up with guidelines to produce epi profiles that are relevant for both
prevention and care.” Mokotoff was to attend a January meeting Atlanta on how to
implement the guidelines. “Well we’ve been doing it since 1998! We spent a lot
of time working with the prevention planning groups early on. (In the beginning)
there was a huge gap between us. The prevention people had a perspective very
different from ours. And I really feel we have come towards the middle and
really learned from each other.”
Stats Reporting: Risk Hierarchy
“Because I have been around so long, I get involved with national policy. I get
invited to CDC, not infrequently, as a representative,” said Mokotoff. Last year
she started speaking out nationally about the risk hierarchy “because everyone
knows how outdated it has been for years.” Mokotoff has a paper coming out in
Public Health Reports in August that recommends changes to CDC’s risk hierarchy.
And CDC will be writing a companion piece to respond to about her
recommendations – “none of them are big surprises,” she said.
The order that the stats are listed, the risk behaviors, i.e. MSM, MSM-IDU, IDU,
are listed in a hierarchy. The big issue for women is that injection drug use (IDU)
is above heterosexual. What this means said Mokotoff, is if a woman ever
injected drugs, she’s listed in the IDU category – even if her risk is
heterosexual. “(CDC) realized they needed a dual risk category for men - MSM-IDU.
They’ve never had it for women. The other problem is the heterosexual category
is very rigid…For a woman to be placed in the heterosexual category, she has to
tell you that one or more of her male partners was a bi-sexual man, an IDU or
known to be infected,” said Mokotoff. Otherwise they are placed in the
undetermined category.
Starting with the January '03 statistics there is a new subcategory of the undetermined
group. Anyone in the ‘undetermined’ category who reported sex with one or more
heterosexual partners will now be considered ‘presumed heterosexual’ cases.
“This is a sexually transmitted disease and we’ve had sexually active people in
the undetermined category,” said Mokotoff. “That category should be reserved for
truly rare or unknown modes of transmission. For example: a child whose
biological mother is HIV negative - it could be a sex abuse case; a woman who
has reported no injection drug use and sex only with women – because that’s a
transmission that’s extremely rare; a person who has reported no sex with men or
women for the past ten years; occupational exposure, someone who had a needle
stick to a known case and the baseline HIV test is negative – I mean interesting
cases, that may represent things you need to look at – not sexually active
adults.”
CDC has no trouble applying the presumed heterosexual category to women. The
problem is what you do with men said Mokotoff. “My fear is that if you add the
presumed heterosexual category – especially in communities of color with the
stigma issues around (MSM) – you would end up with some problems misclassifying
men who should be in the MSM category.”
Outspoken and forthright, Mokotoff continues to walk the unbeaten path in
epidemiology. Where politics and bureaucracy would bog others down, she reaches
for the STARHS and grabs them.
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“Part of the reason for our great success in surveillance
and special projects is the great team work and qualified staff,” Garald A.
Goza, Manager HIV/AIDS Surveillance, MDCH
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Some Special Surveillance Studies
ASD – Adult Spectrum of Disease study, a chart review study based at Henry Ford
and Detroit Medical Center. Patient records were reviewed every six months until
they were lost to follow up or died. It’s like case reporting times six, it’s
very complete information based on the medical record review. It started in 1990
and is ongoing.
SHAS – Supplement to HIV Surveillance Study, a one-time interview project that
is more behaviorally oriented than ASD. (Both ASD and SHAS are studies only in
Detroit not statewide.) This is conducted at Henry Ford and Detroit Medical
Center and two Detroit Community Health Connection clinics. It began in 1990 and
is ongoing.
Search Project – a short-term project that was conducted in the early 1990’s. It
looked at medical records for evidence of opportunistic infections and combined
markers – indicators of AIDS. PCP was one of the biggest markers before 1996 and
the advent of better drugs. This study used various patient databases in
Michigan.
STEP project – an expanded prenatal surveillance project (Results published in
MMWR Feb 2002). This has provided expanded perinatal data since the late 90’s.
(Not to be confused with the survey of childbearing women.) The expanded
perinatal surveillance project looked at more than just the infant’s case data.
It looked at the mother’s prenatal chart and “collected much more extensive
information on drugs and other conditions that surround the life of the mother
and the baby, information that doesn’t go on surveillance data. (See summary on
the web site www.mihivnews.com/mmwr.htm#perinatal) This project is ongoing and
now, more simply called Expanded Perinatal Surveillance.
SHDC – Survey of HIV Disease in Care. CDC developed this study to try to collect
the same extensive medical information as ASD: other infections, other
conditions, and all the drugs patients are taking on an ongoing basis - less
expensively than the ASD study. This study uses the HIV/AIDS registry as a
sampling to get a 12-month snap shot of a sample case representative of people
in care in the state.
Mokotoff is working on a paper with others nationally to see if SHDC methodology
is sufficient in fact to give that kind of data. CDC also funded MDCH to do an
“SHDC plus” study, which adds interview to SHDC.
STARHS – Serologic Testing Algorithm for Recent HIV Seroconversion. In plain
English, this study combines the standard sensitive antibody tests (EIA and
Western Blot) with a less sensitive antibody test (EIA). Someone who tests
positive on the standard EIA and negative on the less sensitive EIA is
considered within the last six months. This pilot study (see article) uses a not
yet FDA approved, less sensitive EIA test which is not therefore available for
diagnostic purposes.
HITS – The HIV Testing Survey was designed by CDC about five years ago as states
tried to move to named reporting. This was a survey of high-risk heterosexuals
in STD clinics, IDUs and MSM at gay bars. The HITS survey showed that most
people had no idea what the HIV reporting laws are in their states and it has
nothing to do with whether they test or not. It is in the process of being
wrapped up. HITS has been done in Detroit and Oakland County, and Grand Rapids –
to get some outstate data.
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