Vanessa Smith’s life’s mission depends on numbers.
As executive director of South Side Help Center, a community-based health and social service agency working to eradicate HIV and AIDS, Smith can’t do much without statistics.
“It impedes our progress if we aren’t armed with current data. It’s a problem,” she said. “There’s no way to advocate for more dollars or evaluate our work without updated figures on how widespread HIV/AIDS is locally and who’s hardest hit. If we’re pouring all our resources into reaching one at-risk population and then we find out we should have targeted another, we’ve wasted precious time while the disease was being spread.”
Like other city organizations funded for HIV and AIDS prevention efforts, South Side Help Center is driving with a dated roadmap as it waits for the Chicago Department of Public Health to release specific monitoring numbers. And there’s no deadline or concrete timeline for when reports will be issued.
In the summer of 2008, Chicago’s STI/HIV/AIDS Division promised that its Surveillance, Epidemiology and Research Section would modify materials on the newly devised incidence rate provided by the U.S. Centers for Disease Control and Prevention “for local use” and publish local estimates “late this summer.” Yet the city’s figure never materialized. Nearly a year later, the bugs are still being worked out.
Nanette Benbow, the section’s director, said the delay stems from having to adjust to a brand new data collection system and waiting for the process to mature once the initial issues were identified and resolved. In Chicago, it was only about three years ago that care providers began using the new case report format, and protocol on submitting blood samples to a CDC-designated labs was implemented.
Given that, it still is too soon to produce a really stable number for 2006, Benbow said. Initial rounds of data were incomplete, so she has been hesitant to make extrapolations based on those submissions.
“We had never seen the program, run the program, had that number and certainly had no idea how to put that number into context,” Benbow said. “So one could input something and crank something out, but as an epidemiologist, I can’t just throw a number out there–”I have to interpret and explain it and vouch for its quality.”
According to Benbow, her team likely will not ever release the 2006 incidence number because the data “isn’t ready for prime time,” a sentiment shared by a number of her counterparts at other sites. And Benbow said she’s waiting for the CDC to publish its 2007 report later this summer before releasing any local 2007 data, which she hopes to have ready by the fall. This will allow her to see how Chicago measures up nationally.
To better track the HIV and AIDS epidemic, the CDC developed a new case surveillance system and statistical model, releasing more accurate national results in August 2008.
Rather than calculating the prevalence rate, a point-in-time snapshot of the number of people living with HIV, or the number of diagnoses, which reflects a tally of people who discovered their diagnosis within a given year, the new methodology allows statisticians to estimate the incidence rate. This pinpoints infections that are recently acquired.
Without that distinction, totals can be misleading because prevalence figures continue to grow as medical advancements extend the lifespan of HIV-positive individuals. But that doesn’t mean more people are contracting the disease. And diagnosis numbers aren’t extremely telling because often there is a substantial delay between when a person is infected and gets tested.
Using the advanced technology, the CDC determined about 56,300 Americans contracted HIV in 2006, the most recent year for which complete data are available. The figure–”40 percent higher than the CDC’s longtime stock estimate of 40,000 infections per year–”reveals the epidemic has been worse than previously known. Gay and bisexual men accounted for 53 percent of estimated new HIV infections in 2006, and African Americans represented 45 percent. In fact, the rate of new infections among African Americans was seven times higher than the rate among white people.
The CDC computed the more precise estimates by enlisting the help of Chicago and 21 other city or state health departments, which were awarded grants to implement innovative laboratory testing measures and submit compiled databases to federal researchers.
The “disturbing” uptick and disparities left many local advocates eagerly awaiting geographic breakdowns to lobby Springfield for more focused funding, Smith said.
Within a month or so following the announcement of the national incidence estimate, CDC leaders made their programming available to participating surveillance jurisdictions for those who wished to crunch local numbers for a more detailed look at the HIV and AIDS landscape in their own backyard. The agency even offered training workshops and technical assistance.
There is less lag time for the CDC’s national numbers because of the large quantity of cases estimate formulas are based on as compared to local jurisdictions’ limited data sets. Statistically, the more data gathered, the higher the confidence level of any numerical projections and the less data refining and analysis work is involved.
But in its pilot program announcement, the CDC acknowledged missed opportunities on a local level, stating that statistics aren’t always exploited to their fullest to assess the effectiveness of various interventions and best funnel dollars to affected groups. The center encouraged its awardees to aggressively process and disseminate data to better inform the local policy debate.
“CDC recognizes that HIV/AIDS surveillance data are crucial to the development and implementation of HIV/AIDS prevention programs and that responsiveness to the needs of prevention program managers and community planning groups (CPGs) requires the commitment of resources and personnel,” the announcement reads.
But there was no mandate that sites follow through by generating individual incidence numbers. Even so, researchers in Indiana, Michigan and North Carolina quickly tackled the complex software instructions and have since released these supplementary statistics.
Pointing out that incidence numbers aren’t the definitive research source but only a piece of the puzzle, Benbow said she’s still getting comfortable with the new national reporting mechanism and improving the data collection system.
“As I discussed [the findings] here within the division, my colleagues had many great questions of, –˜Well, what does that mean?’ and –˜What is this saying?'” she added. “I’ve been trying to answer those questions before I release the numbers so that, when I come to any meeting and present this information, I’m able to synthesize so my audience can be confident in using the data for programmatic purposes.”
Marianne O’Connor, the HIV incidence surveillance co-ordinator with the Michigan Department of Community Health, was quick to side with Benbow despite her own state’s impressive turnaround time for releasing 2006 incidence statistics. She said calculating the incidence number requires very intricate programming and takes a high level of expertise.
“I have a masters in public health, and I look at these numbers and algorithms, and it’s like, –˜Oh my gosh,'” O’Connor added. “These are not people who are sloughing off. Nanette Benbow is a national leader–”really top-notch. It’s a question of staffing levels and workload and finding the time to devote to extremely nuanced work.”
Bill Jones, an epidemiologist with the communicable disease branch of the North Carolina Division of Public Health, has run and released incidence numbers for the state. He said it’s up to the discretion of each surveillance jurisdiction to determine whether its first batch of local numbers have too many holes.
“There are limitations when presenting a new group of stats,” he said. “It’s a distinct judgment call, and you have to hold off if your numbers aren’t really strong enough to warrant projections.”
Yet there is a disconnect between researchers whose job is to ensure the integrity of official statistics and service providers at ground zero who needed fresh numbers yesterday to tend to communities suffering most from the disease.
Smith attributed the stall to inadequate staffing at the health department. She said she is eager to get precise, updated numbers to pitch her organization’s wish list programs to funding foundations.
“I can’t create a sense of immediacy or paint a compelling picture if I’m using 2004 data. I can’t show impact; I can’t adjust our approach; I can’t substantiate our claims that this is an urgent matter among African Americans,” Smith said.
“There was a complacency over the last decade, and we didn’t see the trend until it hit us full-force. The signs were there, and we just weren’t alert enough to notice them,” she added. “So anything–”any tools–”that could help us be more vigilant and nip anything in the bud would be great.”
Bruce Jackson, the executive director of The Gift House in North Lawndale, said the health department could be purposely dragging its feet.
“I’m at my wits’ end waiting for the government to get their ducks in a row,” said Jackson, whose nonprofit tests close to 2,000 people a year for HIV and is a surveillance reporting partner.
“The numbers are the unadulterated truth, and they’re going to tell us we’re way off the mark when it comes to funding. Someone somewhere figured out it’s not a good idea to release them because they’ll cause a train wreck if the public holds politicians’ feet to the fire over this,” Jackson added. “But without the data, it’s like going to court and you have the plaintiff but no defendant or evidence. You can’t make a sound argument.”
By the numbers–¦
Since the Chicago Department of Public Health has not yet released the latest HIV incidence data, the city is directing inquiring minds to the STD/HIV/AIDS Division’s summer 2008 report, as well as a June 2009 presentation about a behavioral study on gay and bisexual men in Chicago. Here are the highlights:
–¢ Overall prevalence: 21,367 people were living with HIV in 2006
–¢ Overall diagnoses: 1,557 new HIV cases were diagnosed in 2006
–¢ Racial breakdown: 55.6 percent of people diagnosed with HIV in 2006 were black even though the demographic represented only 34.7 percent of the overall population in Chicago
–¢ Transmission group: 62.2 percent of HIV diagnoses in 2006 were a result of male-to-male sexual contact
–¢ Gender by transmission category: 76.9 percent of men diagnosed with HIV in 2006 contracted the disease by male-to-male sexual contact
–¢ Men who have sex with men HIV and AIDS prevalence: 12,884 gay and bisexual men were living with either stage of the disease as of Dec. 31, 2008
–¢ Overall diagnoses: 1,293 new HIV cases were diagnosed in 2008
–¢ Men who have sex with men diagnoses: 828 new HIV cases were diagnosed among gay and bisexual men in 2008
–¢ Men who have sex with men prevalence rate: 17.4 percent of gay and bisexual men tested between August to December 2008 were HIV-positive
–¢ Black men who have sex with men prevalence rate: 30.1 percent of black gay and bisexual men tested between August to December 2008 were HIV-positive; these infections largely were new ones