Big money, few results: Illinois has spent millions to fight HIV and AIDS, but African Americans still struggle to receive the treatment they need.

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Post-lunch drowsiness was gently spreading through the banquet hall at the Hilton Hotel Springfield until Yvette Flunder started talking.

Standing next to three white, helium-filled balloons with red ribbons emblazoned on them and attached by a red string, the sturdily built Flunder instantly grabbed the attention of hundreds of service providers gathered at the HIV/STD Conference and refused to let go.

The San Francisco-based pastor began with a gospel song about God's grace giving people the will to endure.

Despite the valiant efforts of government-funded organizations and individuals, the disease's relentless advance has continued, she said. Flunder's volume rose, and her head bobbed around the microphone atop the wooden podium.

"I've lost a lot," Flunder said, the light from the chandelier-style lights glinting off her wristwatch, silver bracelet and glasses. She said she has 149 programs from the funerals she has officiated since 1986.

"Let me repeat, 'I've lost a lot," she said in her deep voice. Flunder's statement was a fitting one for African Americans and HIV and AIDS in Illinois.

This is not a story of unmitigated disaster or wanton neglect. Instead, it is one of honorable intentions and resources provided--but many road blocks existing on the way to success.

The state of Illinois has increased its funds by tens of million of dollars to combat HIV and AIDS--and created two funding sources designed to combat the epidemic among African Americans--but it still has failed to adequately meet the needs of its black residents with the virus.

African Americans constitute about 15 percent of Illinois' population, but more than 50 percent of people living with the virus, according to the Illinois Department of Public Health, which provided The Chicago Reporter with data from 2003 to 2007, the latest five years for which statistics are available. Among black people, men who have sex with men represent the largest percentage of new diagnoses--and a growing share of diagnoses for which risk factors are known from 2003 to 2007.

Meanwhile, the amount of prevention dollars in 2007 for African Americans represented only 30 percent of all prevention monies spent by the state--a significant drop from the 46 percent of all state prevention dollars used for black people in 2002.

Beyond these funding concerns, a combination of health department procedure and staffing, the comparatively small size of organizations working in the state's black communities, and an overlooked planning process have formed a lethal combination.

The consequence: African Americans, who many say need the support most, are not receiving the resources necessary to stop the epidemic that was originally seen as a white gay men's disease but which for decades has actually been on the rise most dramatically in communities of color.

The Reporter also found:

* The share of all prevention dollars spent in 2007 for the largest risk group--men who have sex with men--was lower than its share among diagnoses that year.

* The annual grant cycle used by the health department leads many nonprofits to have trouble fighting the virus.

* The health department is severely understaffed in administering the grants, and this is having a negative impact on the nonprofits' ability to provide existing services.

* The size of nonprofits working primarily in black communities is qualitatively smaller than the city's biggest organizations--a factor that makes them face more challenges in providing ongoing services.

* In 2007, the Illinois HIV Prevention Community Planning Group, the state's advisory group charged with designing a comprehensive plan to combat HIV and AIDS, disagreed so strongly with the health department's funding priorities that it wrote a letter of nonconcurrence--one of the first in the group's 14-year history.

For Harold Lawary, former community co-chair of the advisory group, Illinois is on the verge of a public heath catastrophe, with black men who have sex with men the largest but by no means the only--group affected.

"The current HIV epidemic amongst African-American [men who have sex with men] is at an all-time high and should be considered a state of emergency in Illinois," Lawary said. "The situation must be rectified ... for those most ignored and impacted by the burden of this dreadful disease."

Catherine Christeller, executive director of the Chicago Women's AIDS Project, a service provider that advocates for women at risk or living with HIV, said the crisis comes in a context of failed leadership and the absence of a statewide strategy, with predictable but tragically avoidable results.

"There are a lot of people in the state, specifically black men who have sex with men, injection drug users and women, who didn't have to be at risk but continue to be at risk because of these failures of strategy and leadership," she said.

Tom Hughes, deputy director of the health department's Office of Health Protection, acknowledged that men who have sex with men continue to be at risk but disagreed with the idea that the state does not have a plan to fight the virus.

"We've had a drop in the number of injection drug users in terms of the number of cases," Hughes said. "That blows [the criticism] out of the water right away.

"We've had great success with peri-natal, we've had great success with injection drug users, [but] we still need to concentrate on men who have sex with men--whether black, white or Latino," he said.

Few people dispute that African Americans are the hardest hit by the virus in Illinois. Between 2003 and 2007, African Americans represented 4,105 of 7,657--or 54 percent--of people in Illinois newly diagnosed with HIV, according to the health department. The percentage was even higher for AIDS, as 3,570 of 6,344--or 56 percent--of AIDS diagnoses were for black people.

Among African Americans, men who have sex with men were the largest risk group, with 2,387 people being diagnosed with the virus during those years.

The state has allocated increasing amounts of money to meet the needs of its residents.

The amount of money from state and federal sources spent by the Office of Health Protection, a section of the health department that works to reduce the spread of HIV and AIDS, has increased steadily from a total of $45 million in 2002 to nearly $67 million in 2008. State expenditures during these years nearly doubled from about $13 million to about $25 million.

Since 2002, the state has created two funding sources specifically designed to tackle black people's needs.

In 2005, Gov. Rod Blagojevich created Brothers and Sisters United Against HIV/AIDS, or BASUAH. The mission of the organization, which receives $2 million a year, was to tackle HIV and AIDS problems among African Americans. The program is directed through the Center for Minority Health Services, a part of the health department that provides information and assistance regarding the healthcare needs of minority populations.

Also in 2005, the state legislature passed the African-American HIV/AIDS Response Act, which allocated about $3 million a year in 2007 and 2008 to be distributed to dozens of nonprofits and churches working to combat the virus in black communities throughout the state.

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Hughes added that additional funds went to projects that were not specifically targeted to African Americans but in fact primarily served them. "We've always tried to go with, 'The money should follow the [epidemiology], should follow the disease,'" he said.

But the last year's spending amounts on prevention activities does not match the commitment Hughes articulated.

In 2007, just 25 percent of $4.38 million in federal prevention money was spent on black people, while 33 percent of $7.13 million in the state's prevention funding was for African Americans, according to the health department.

All in all, the state spent 30 percent of all prevention dollars it had available, $11.51 million, on black people--a figure that is significantly lower than African Americans' share of people living with the virus.

Christeller of the AIDS Project said the increased funds spent by the state on African Americans represent an important commitment but they were not put to best use as part of an overall strategy to combat the virus.

"When the politicians decided it was a crisis and put state money into it that had state and federal money, they needed to have a plan and to work with major metropolitan areas--which is where the epidemic is," she said. "That's where they haven't moved forward with a bigger plan except to say that they see it as a crisis in the African-American community, but it's very generic."

A Reporter analysis of nearly 800 grants issued by the health department between 2005 and 2007 confirmed Christeller's point: No grants that were issued outside of Chicago exclusively targeted black men who have sex with men.

The funding challenge is just one of many difficulties in fighting the virus among the state's 1.95 million black residents. Two of the major ones: a single-year grant cycle and an understaffed prevention section in the health department.

Hughes explained that grants are offered on a one-year basis because of the vagaries of state funding in which funding levels can vary from year to year. "I am not going to commit [the health department] to a bunch of grants if I don't know what the bottom line is," he said.

But this arrangement can make it hard for organizations to build momentum and provide ongoing services, Christeller said. "Even a year contract is hard to work with. You are constantly reapplying ... [and there is] no continuity," she said.

The Chicago Department of Public Health issues three-year grants, according to spokesman Michael Hunter.

But Charles Martin, executive director of the South Beach AIDS Project that serves minority gay communities in Miami-Dade and Broward counties in Florida, said an even longer time is necessary. "When you start putting money into a group, you can't give money for one time for three years," he said. "There has to be at least a 10-year investment."

Alan Biggerstaff, who is slated to assume Hughes' position in January 2009, said the department is considering several steps not to extend grants' length but to make an application process easier for organizations.

Some of the steps include creating a standard application on which target groups are placed and holding bidders' conferences well in advance of the upcoming fiscal year. In addition, Biggesrstaff said the department is also considering having a four- or six-week period during which applicants can receive feedback on their proposals to improve their chances of success.

Hughes cited protracted budget negotiations between statewide legislators in the past two years as a source of delay in organizations receiving the money that had been set aside for them.

The budget delays have been exacerbated by the lack of prevention workers who would administer the grants when approved--an understaffing that often leads to months-long lags in money being distributed, according to advocates.

Seven out of a total of 13 HIV prevention positions are vacant, according to Kelly Jakubek, health department spokeswoman.

The CDC funding is available to fill these positions, but a hiring freeze means that they remain unfilled. "That section is woefully understaffed, yet there is a hiring freeze," said Jeffery Erdman, HIV prevention lead agent for Region 6 at the Champaign-Urbana Health District.

Hughes of the health department declined to comment on the consequences of the unfilled positions on agencies' abilities to provide services.

But Ron Simmons, president and chief executive officer of Washington, D.C.-based Us Helping Us, People Into Living, which specializes in HIV and AIDS services for black gay and bisexual men, said the impact can be highly negative.

"Even if you get the grant, so many grants are reimbursable grants," he said. "The assumption is that you've got the money in the bank, so spend it. Unless you're prepared to shell out $20,000 to $30,000, you're screwed."

Many nonprofits that provide HIV and AIDS services in black communities do not have sufficient resources to compete for larger grants or to even provide ongoing services when the funding arrives late.

The Reporter analyzed 43 revenue reports from 2004, 2005, 2006 and 2007 for 37 organizations that received money either from the health department, the Office of Minority Health or through the Response Act or BASUAH. Ten of the revenue totals were less than $300,000, and nearly 50 percent of the annual revenues were less than $700,000.

Pier Rogers, director of The Axelson Center for Nonprofit Management at North Park University in Chicago, said an organization's size can limit its ability to provide services. "Many nonprofits are underresourced and manage to do well, but what they can do is constrained," she said. "They can't do what they could if they had more resources."

By contrast, the AIDS Foundation of Chicago, which is located in the Loop, and the Howard Brown Health Center, which is located in the Uptown neighborhood, had annual revenues in 2007 of $18.3 million and $13.8 million, respectively. The total of $32.1 million for the two organizations was greater than the combined total of 34 of the other revenue reports.

In addition to these obstacles, the Illinois HIV Prevention Community Planning Group, a group that was created in 1994 to help the state design a comprehensive strategy for HIV and AIDS, found that the distribution of federal money did not match the epidemic.

Of the 17,678 reported HIV cases from 2000 to 2005, more than 5,300--or 30 percent--were black men who have sex with men, injection drug users or both. White men who have sex with men, use injection drugs or both accounted for another 21 percent of the total number of cases, but together these groups received just 15 percent of distributed federal funds, according to the group.

At the same time, "African-American High-Risk Heterosexual Males and Females" represented just 11 percent of the reported cases but received 85 percent of distributed funds.

"It is clear from this assessment; IDPH HIV/AIDS Prevention Administration has failed in the most critical component of community planning process: 'ensur(ing) that HIV prevention resources target priority populations and interventions specified in the Comprehensive Plan,'" the group wrote.

This letter of nonconcurrence was one of three choices available to the group; the other two were either a letter of concurrence or a letter of concurrence with reservation.

Erdman, who is also a co-chair-elect of the group, said the letter was necessary to indicate the degree of frustration with the department, which he said ignored the substance of the recommendations, as well as the difficulty with receiving data from the department.

The Reporter also found that the state spent 42 percent of its $11.51 million in prevention dollars on men who have sex with men in 2007. That year, 1,033 out of about 1,630--or 63 percent--of diagnoses with known risk factors were for men who have sex with men.

Hughes of the health department said the prevention group's purview is only over federal money and said that looking at the statewide figures without including data from Chicago, which has a large number of people living with the virus, gives an inaccurate picture of HIV funding in Illinois.

Meanwhile, help may be on the way for small nonprofits working in black communities. They will be eligible soon to receive money through a 2007 act that mandated the creation of "Red Ribbon Cash" lottery tickets. A portion of the money generated from the sale of those tickets will be distributed to them.

"The [point was] to really make sure the money got to the ground level and to those in organizations with those who are most impacted," said Sen. Jacqueline Collins, the bill's chief sponsor. "Previously that had not been the case."

Christeller spoke of the election of the former U.S. Sen. Barack Obama as a source of optimism and the possibility of creating a national HIV and AIDS plan, while Lawary expressed confidence in the incoming leadership team of Biggerstaff and new HIV and AIDS section chief Mildred Williamson.

But he also put the leaders on notice that he would be watching their actions closely." I have confidence in the new leadership in the state," he said. "But I'm going to be a watchdog, too."

Power Points

African Americans make up 15 percent of Illinois' population but for years have represented more than 50 percent of the people living with HIV and AIDS. Despite the additional expenditure of tens of millions of dollars from the state, serious obstacles still exist in making a dent in the spread of the virus in black communities.

* The state spent 30 percent of its prevention dollars in 2007 on black people--a steep drop from 46 percent five years earlier.

* Among African Americans, men who have sex with men were the highest risk group from 2003 to 2007 and a growing percentage of people for which risk factors are known during those years.

* The share of state prevention dollars spent on men who have sex with men in 2007 was lower than their percentage of diagnoses that year.

For more information about the people and organizations we write about, go to www.chicagoreporter.com.

Methodology

The Chicago Reporter obtained epidemiological data from the Illinois Department of Public Health showing the rates of new HIV and AIDS cases by race and by risk factor for 2003 to 2007. The department also provided the Reporter with its HIV and AIDS funding levels for 2002 and 2007.

To analyze the size of nonprofits working primarily in black communities, the Reporter identified grant recipients that received money from the health department or Brothers and Sisters United Against HIV/AIDS or from funding allocated for the African-American HIV/AIDS Response Act and examined their annual revenue reports for one of the years from 2004 to 2007.

RELATED ARTICLE: One epidemic, two different stories.

Researchers surfing the Internet for AIDS statistics today will be presented with conflicting pictures of the epidemic in Chicago. That's because the two agencies responsible for tracking epidemiological data in Chicago--the Illinois Department of Public Health and the Chicago Department of Public Health--report numbers on their Web sites that differ by as many as 640 cases each year since 2000.

In 2005, the latest year for which nonprovisional AIDS data are available, the Chicago health department reports 878 diagnosed cases in Chicago, while the Illinois health department records 807 reported cases. The biggest disparity was logged for 2002, when the Chicago health department reported 1,040 diagnoses, compared to the Illinois health department's 1,680 reports.

One reason for the disparities might be how and how often the two agencies' Web sites are updated.

Nanette Benbow, director of surveillance at the Chicago health department, said her agency updates its Web statistics about twice a year, though it receives new data on a daily basis.

The Illinois health department, meanwhile, receives up-to-date surveillance data from the Chicago health department on a biweekly basis. But its data prior to 2005 haven't been updated on its site "in quite some time," said Melaney Arnold, Illinois health department's communications manager.

"The department is in the process of creating new material that will replace existing Web information," Arnold said. "The data is constantly changing--even data that is 10 years old changes. When we run a report, however, we make sure to use the most up-to-date data. We are just unable to get the updated information on the Web site at this time, but we're working on it."

John Peller, director of government relations at the AIDS Foundation of Chicago, said the Illinois health department's failure to post up-to-date AIDS data is simply a question of resources.

"The [Illinois health department] doesn't have the resources to provide the kind of public information on HIV and AIDS that would give service providers and the media and members of the general public accurate statistics on the HIV and AIDS epidemic in Illinois," he said.

Peller also emphasized the importance of keeping accurate data--whether on Web sites or in published reports--noting that the U.S. Centers for Disease Control and Prevention and other agencies allocate HIV and AIDS funding based on surveillance data. Out-of-date statistics could mean the funding doesn't get distributed where the needs are.

"The bottom line for us is that the HIV and AIDS statistics that are reported tie directly to funding," he said. "It is absolutely essential that we have in place ... the best surveillance in the country, and that includes the ability to provide timely and complete reports to the community."

--Kara Madden

Contributing: Stephanie Behne, Laura Burns, Rolando Ithier, Kara Madden, Anita Valentin, Lourdes Vasquez, and Marian Wang.

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Money, black percentage rise

The total dollars spent on HIV and AIDS programs increased
more than 50 percent from 2003 to 2007. The percentage
of new HIV and AIDS diagnoses for African Americans has
remained higher than 50 percent during that time.

Percentage of new AIDS and HIV diagnoses
that are African American

2003   57%
2004   54%
2005   54%
2006   54%
2007   56%

Note: Table made from bar graph.

Amount spent on HIV and
AIDS programs in Illinois

2003   $45m
2004   $53m
2005   $60m
2006   $64m
2007   $73m

Note: Table made from line graph.

Note: Figures do not include money from the Center for Minority
Health Services.

Source: Illinois Department of Public Health; analyzed by The
Chicago Reporter.

A growing share

From 2003 to 2007, black men who have sex with men
have represented the largest risk factor and a growing
share of all new HIV and AIDS diagnoses among African
Americans in Illinois.

Men who have sex with men

2003   517(40%)
2004   486(41%)
2005   497(44%)
2006   447(47%
2007   440(53%)

Note: People could fall into multiple risk factors.

Source: Illinois Department of Public Health; analyzed by
The Chicago Reporter.

Note: Table made from bar graph.

Puzzling data

Epidemiology reports posted on the Web sites of the Chicago
Department of Public Health and the Illinois Department of
Public Health tell different accounts of the AIDS epidemic
in Chicago.

                                     2000     2001     2002

Illinois Dept. of Public Health     1,428      849    1,680
Chicago Dept. of Public Health        976      958    1,040

                                     2003     2004     2005

Illinois Dept. of Public Health       997      929      801
Chicago Dept. of Public Health        937      776      878

Source: Illinois Department of Public Health, Chicago
Department of Public Health.