From Policy to Funding: A Case Study of Inequitable Funding Allotments Towards Chicago Illinois’ Black-Led HIV/AIDS Service Providers

Abstract

According to census and surveillance reports (2018), Black people in Illinois make up 15% of the state population (12,587,530) but comprise more than 46% of people living with HIV infections (35,841) and 51% of people newly diagnosed infections (1,361). Comparably, Blacks in Chicago make up 30% of the population (2,693,976) but comprise more than 51% of people living with HIV infection (18,719), as well as 54% newly diagnosed infections (724). (Dawson, Kates, 2021) (AIDSVU, 2020) This trend has been consistent for the past 15 years, whereas Blacks accounted for the highest proportion of people living with and newly diagnosed HIV infections. However, HIV funding to Black-Led HIV/AIDS Service Providers was not equitably distributed as compared to White-Led Service Providers. As there was no justification or accountability for these grossly inequitable funding allotments, Black-Led HIV/AIDS Service Providers unified to form the BLACK LEADERSHIP ADVOCACY COALITION FOR HEALTH EQUITY (BLACHE). This case study will relay how BLACHE brought awareness to the public, legislators, and others. Moreover, how this organization moved the needle for funding by increasing the allotment from zero dollars ($0) in 2019 to $15M in the 2021 Illinois State budget through the African American HIV/AIDS Response Act (AAHARA).

Introduction

Since the beginning of the Human Immunodeficient Virus/Acquired Immunodeficiency Syndrome (HIV/AIDS) pandemic community involvement has become more pronounced in addressing this health ailment. Community activist and advocates brought increased awareness and education to mainstream public about the devastating impact HIV/AIDS was having on various sectors of the population. Community members also challenged government institutions to initiate plans and provide funding for these newly formed Community Based Organizations (CBO) who would carry out the work of public health programs. With the advent of new technological testing apparatus, and the development of behavioral interventions it became easier for people to access health services more directly within their own communities.

In the United States (US) organizations like the National Association of People with AIDS (NAPWA) was formed to get involve in all aspects of decision-making surrounding AIDS policies and funding strategies. As the epidemic persisted more people living with HIV/AIDS, at risk for or affected by the virus was included in governmental prevention and treatment efforts to “ensure buy in support”. (Valdiserri & Holtgrave, 2019) By 1994 the federal government unveiled a new process whereas state and local health departments would receive federal funding to prevent the disproportionate spread of HIV infections among marginalized communities. Presently from 2017–2021 federal, state, and local governments have launched another new initiative to end HIV infections within the US. These ‘Ending HIV Epidemic Plans’ were accompanied by additional funding. Each plan uses a targeted-population strategy to reduce the number of new HIV cases within their geographical areas. (HRSA, 2021) More specially, the Illinois and Chicago plans have included language about Health Equity as a category marker to provide resources in projects that address root causes of health disparities including systematic racism. However, when the lens of Equity is applied to federal, state, and local government agencies funding allocations, *Black-Led HIV/AIDS Service Providers are not receiving equitable funding as compared to their White-Led HIV/AIDS Service Providers. The burgeoning challenge for ending the HIV epidemic also includes equitable funding for HIV/AIDS Service Providers. The question is should White-Led HIV/AIDS Service Providers continue to receive greater proportions of federally funded allocations to provide services to majority Black communities as compared to Black-Led HIV/AIDS Service Providers who are also capable of providing the same services? Theoretically, any HIV/AIDS Service Providers ought to be able to service all people, regardless of race/ethnicity. But are these funding allocations in-line with the ‘Ending HIV Epidemic Plans’ or contradictory in addressing root causes of health disparities including systematic racism? As seen through the experiences of Black-Led HIV/AIDS Service Providers, this case study aims to relay how they challenged the status quo by calling for a legislative cease and desist order in racial inequity funding tactics towards Black-Led HIV/AIDS Service Providers. And like their NAPWA predecessors, the efforts they took to bring awareness to the public, legislators, and other agencies pertaining to this issue. Additionally, what they did to move the needle for more equitable funding through the African American HIV/AIDS Response Act (AAHARA), with an allotment of zero dollars ($0) in 2019 to $15M in the 2021 Illinois State budget. (*Blacks also refers to African Americans, African-Descendants residing in the US)

Epidemiological Overview

According to most current census (2020) and surveillance reports (2018), Blacks in Illinois make up 15% of the state population (12,587,530) but comprise more than 46% of people living with HIV infections (35,841) and 51% of people newly diagnosed infections (1,361). Comparably Blacks in Chicago make up 30% of the population (2,693,976) but comprise more than 51% of people living with HIV infection (18,719), as well as 54% newly diagnosed infections (724). (CDPH HIV/STI Bureau, 2019 & AIDSVU, 2020) This trend has been consistent for the past 15 years, whereas Blacks accounted for the highest proportion of people living with and newly diagnosed HIV infections. However, HIV funding from both the Illinois and Chicago Departments of Public Health has decreased, more specifically the allocations to Black-Led HIV/AIDS Service Providers were not equitably distributed in accordance with the disproportionate impact of HIV/AIDS on Blacks.

Chart 1.

Black Representation

Funding Sources

By 1990 the Comprehensive AIDS Resources Emergency Act (currently known as Health Resources and Services Administration (HRSA) Ryan White HIV/AIDS Program (RWHAP)) was passed by congress. The Act named after a young boy diagnosed with AIDS, was a culmination of legislation which provided funding for people living with HIV infection. The HRSA RWHAP funding was placed in letter categories/parts (A-D &F), whereas part A funding is given to metropolitan areas with high incidence of HIV and part B, provides grants to states and territories. According to HRSA Fiscal Year (2021) funding announcements recipients should work with their community and public health partners to improve outcomes across the HIV care continuum. The HIV care continuum has five main stages that include: HIV diagnosis, linkage to care, retention in care, antiretroviral use, and viral suppression. The HIV care continuum allows recipients and planning groups to measure progress and to direct HIV resources most effectively. RWHAP recipients are encouraged to assess the outcomes of their programs along this continuum of care. In other words, it encourages “a participatory planning process in which consumers (community voices) have a voice in establishing priorities for the allocation funds”. (Valdiserri, & Holtgrave, 2019)

Section 2602(b)(4)(C) of the PHS Act requires Planning Councils/Planning Bodies (PCs/PBs) to determine the priority for RWHAP allowable services and service allocations of RWHAP Part A funds every year. The RWHAP Part A PCs/PBs are also responsible for evaluating the efficiency of the recipient in distributing funds to service providers. (HRSA, 2021)

The U.S. Department of Health and Human Services (HHS) launched Ending the HIV Epidemic (EHE) initiative in 2019. The initiative aims to reduce new HIV infections in the U.S. by 90% by 2030. The commitment to “ending the HIV epidemic” has been accompanied by additional federal funding, including reprogrammed FY 2019 funding and new Congressional appropriations in FY 2020 and FY 2021.

The HHS Office of the Assistant Secretary for Health coordinates this cross-agency initiative. Collaborating agencies include the Centers for Disease Control and Prevention (CDC), Health Resources and Services Administration (HRSA), Indian Health Service (IHS), National Institutes of Health (NIH), Office of the HHS Assistant Secretary for Health, and Substance Abuse and Mental Health Services Administration (SAMHSA).

Funds Allotment for FY 2020 Phase 1 Chicago Eligible Metropolitan Area (EMA Ryan White) Program EHE Award-$1,818,306, EHE Primary Care HIV Prevention Awards (to Health Centers) $2,393,970 and EHE CDC Integrated HIV Programs for Health Depts. Component A-$2,683,773 Total Cook County $5,077,743 Ending HIV Epidemic Plan, federal, Getting to Zero State Plan and the newly developed Ending the HIV Epidemic Plan for Cook County 2021–2025.

Both state and city health departments have not adhered to requirements for consulting with PCs/PBs. Illinois Department of Public Health (IDPH) and Chicago Area HIV Integrated Services Council (CAHISC) planning bodies are currently inept or totally disbanded (CDPH since Jan. 2019). So, if this is a federal requirement why are they not being held accountable for their actions, and continually receiving increased federal funding?

IDPH and CDPH Funding Portfolios

Based on a Funding Portfolio prepared by the IDPH HIV Section Chief, the Excel Spread Sheets accounts HIV/AIDS funding allocations for February 2020. It lists the name of the project, funding source either federal or state, descriptions, award period, total award amount, uses, distribution by Priority Population percentages, and notes with more descriptions. Of the $107,542,107 (107.5M) 60% of the budget is funded by federal sources [Integrated HIV Surveillance and Prevention Programs, Morbidity & Risk Behavior Surveillance (MMP), Ryan White Part B Care, Ryan White Part B Care, Ryan White Part B ADAP Supplemental, RW 3rd Party Reimb (REBATE), Housing Opportunities for Persons w/ AIDS (HOPWA)]. The remaining budget is funded by the State of Illinois [General Revenue Fund, Quality of Life (QOL), African American AIDS Response Act (AAARA)]. In reference to the AAARA the only fund that was created to be 100% dedicated to Blacks was earmark for barely 1% ($1,218,000) of the entire 2020 budget. However, there are no listings of which Service Providers received what funding.

In contrast, the report issued by the Deputy Commissioner for CDPH STI/HIV Bureau 2019 HIV Services Portfolio RFP Outcomes lists the allocations awarded to Service Providers but not all the federal sources. The document provides the 13 funding categories, the amount for Total category allocations, the number of awards, the total number of Black-Led Provider awards and the total allocations to Black-Led Providers. The aggregate amount awarded was $40,420,285 (40.4M), with a total of 56 awards of which 7 were awarded to Black-Led Providers for a total of $1,488,680 (1.4M) which comprised less than 4% (3.6%) allocated funding to Black-Led Providers.

Table 1.

CDPH HIV/STI Bureau 2019 HIV Service Portfolio Outcomes

Categories	Total Award Allocation	Total Number Awards	Number Awards Black Providers	Total Award Allocation for Blacks Providers
Community Development	$1,150,000	4	2	$575,000
Services for Persons Who Use Drugs	$1,275,000	3	0
Housing People Living with AIDS	$8,600,693	19	4	$553,608
Housing People Vulnerable to HIV	$750,000	1	0
Essential Supportive Services	$1,350,002	4	1	$360,072
HIV Screening	$1,500,000	1	0
HIV Resource Coordination HUB	$1,800,000	1	0
HIV Primary Care	$633,386	3	0
Population Centered Health Homes	$16,153,304	12	0
Financial Assistance	$850,000	1	0
Foodbank & Home Delivered Meals	$950,000	3	0
Medical Care Management	$4,557,900	1	0
Other Professional Services	$850,000	3	0
Total	$40,420,285	56	7	$1,488,680
			less than 4% to Black Providers

Discussion

BLACHE ACTIVITES

In reaction to these grossly inequitable government funding allotments, Black-Led HIV/AIDS Service Providers across Chicago, Illinois unified to form the BLACK LEADERSHIP ADVOCACY COALITION FOR HEALTH EQUITY (BLACHE). By January 2019 there was a shift in policies funding requirements and funding from state and local governments for HIV/AIDS Service Providers. In the previous year there was a full body CAHISC vote to maintain the funding model that had been in place for years, however the CDPH administration was not in support of the vote, thusly canceling all further meetings and disbanding CAHISC without any prior notice or explanations. Additionally, in February of 2019, state legislators had announced their intent to change the language of the AAHARA, 410 ILCS 303 funding solely to Black-Led Providers, defined as 51% board and an Executive Director/CEO was also Black. The proposed language was to allow for ‘Black serving’ provider agencies, not just Black-Led Providers to become eligible to apply for funding from this source. What made this proposal so egregious is that one of the White-Led Service Provider had already received $12M from IDPH to build their capacity and headquarter in a majority White section of Chicago. Similarly, for the CDPH Housing People Living with AIDS category, total award amount was $8,600,693, there were 20 applications, 19 were awarded, including 4 Black-Led Providers, but a very prominent, White-Led Service Provider was awarded 3.6M, more than double any Black-Led Service Provider combined (1.4M) and was also awarded 1.8M for another category. Thusly they received more than 13% (5.4M) of the total CDPH HIV Service Provider budget. Furthermore, for the HIV Screening category, total award amount was $1,500,00, there were 3 applications, only one was awarded, no Black-Led Providers awarded. And this same provider was also awarded $5M from the National Institute of Health’s (NIH) Rapid Acceleration of Diagnostics (RADx) Underserved Populations program, receiving 6.5M in federal funding.

In response to this unprecedented actions Creola A. Kizart-Hampton, President/ Founder, GREATERWORKS! INC started a petition to keep the fidelity and initial legacy intent of the AAHARA. Approximately 7 Black-Led Service Providers and 4 Black State Legislators signed/supported the petition.

After the petition was signed and sent to the Mayor’s and Governor’s Offices, the group held various press releases with speakers from both Black-Led Service Providers and Black State Representatives.

From their perspective changing the language and receiving less funding was not fair or equitable treatment towards them. Overall, their sentiments were:

“We are burdened by a multitude of disease comorbidity. We tackle Donald Trump, HIV, Cancer, Diabetes, Hypertension, Asthma, Civil unrest, Black male violence, Intimate partner violence, Mass incarceration and Sexual abuse and now COVID-19; and these were still, just a few of our burdens. We can only win as a team not divided. Only, we know best how to reach our community and arm our people, with lifesaving health literacy.”

The original funding (pre-COVID-19) for the AAHARA fund through a reimbursement process was set to fund up-to 52 Black-Led Providers for a maximum of $50 K and addition funding of $750k for a Black Oversight and Training Group what have yield approximately $2.8 M ($2,779,000) for the fiscal year 2020. However, by May 2020, no ($0) state dollars had been allocated for the AAHARA fund. This had never happened before to any HIV/AIDS providers in the State of Illinois. Moreover, it was not expected since in 2019 Illinois Infrastructure Bill provided a $15 million appropriation for White-Led HIV/AIDS Service Provider to build a new healthcare and social services facility on the Southside of Chicago. The future development will include healthcare and other essential services affirming the lives of LGBTQ+ people and allies. Through publicly promoted virtual Zoom sessions, press-releases, and other community engaging activities during World AIDS Day, Black HIV Awareness Day, HIV Vaccine Awareness Day, and National HIV Testing Day, the Black-Led HIV/AIDS Service Providers through BLACAAFI will continue to speak truth to power as one unified voice. Another BLACHE member stated, “Addressing issues like CDPH funding inequity, R3, AAHARA, IDPH inequity could be more effectively addressed if there was truly a Black-Led CBO Collaborative. That way the Collective/Collaborative would be included in ‘inequity discussions» as opposed to the city and others, cherry picking what agencies they include. If we don’t do it a White-Led organization will form one and engage legislators in policy, apply for funding and determine/define «equity» on their terms, not ours!”

Responses from Both Heath Departments (IDPH and CDPH)

Currently, House Bill 3653 is still in committee and awaiting the Governor’s signature during the Spring 2021 session. This legislation is intended to increase the AAHARA funding allocation from 1% ($1,2M) to 14% (15M) of the 2021 budget and all Federal and State funding categories have been earmarked for majority Black populations. Nevertheless, as of May 2021 no funding will be reimbursed to the Black-Led Service providers for their 2020 fiscal year work activities. This is supposedly due to an internal investigation of the IDPH funding mechanism that has been violating state regulations by not stipulating correct target populations for the past 14 years. Although it was an inexcusable mistake on behalf of the IDPH, to date there has been no accountability, repercussion or consequence for this debacle. And once again it is the Black-Led HIV/AIDS Service providers who will suffer.

Comparably, CDPH stated 77% of funding is also earmarked for Blacks more than any other group. On the contrary, Black-Led Service Providers are not receiving even a third of the total budgets, due to the stance of health department leadership, specifically CDPH Deputy Commissioner. During a call with a national HIV/AIDS advocacy group** the Deputy Commissioner touted that “70% of Chicago residents receive HIV Services”, thusly not in agreement that Black-Led Service Providers (CBOs) should be allocated more funding because of racial inequity of incidence of HIV, or the funding should be based upon ethnicity of HIV. And that “as long as Black people receive services; it should not matter what agencies are awarded funding”. Refence from the “Blacker the Plan” meeting call March 2021.

Furthermore, the Deputy Commissioner went on to admit they had not maintained the Chicago Area HIV Integrated Service Council (CAHISC) to provide guidance on the allocation of funding providers to deliver HIV prevention, care and housing services for the Chicago Eligible Metropolitan Area (EMA). He went on to say “We will be convening CAHISC soon to review feedback on HIV planning efforts. Feedback was collected through a variety of forums, including focus groups of CAHISC members and community partners”. To date no members of the disband CAHISC board has been included and selected ‘cherry-picked’ community members for the focus groups were from Black-Led Service Providers who had never received funding from CDPH, thusly not having any background knowledge of how the process should work when in compliance and for parity. **Due to ongoing negotiations with specific Provider Agencies, will not be identified or named.

Summary

This case study reveals how power and historical privilege benefits White-Led Service Providers through inequitable funding allocations. Sentiments touted by the CDPH Deputy Commissioner echo past exclusionary measures and historical practices under the guises of institutional racism. Nevertheless, one must address a fundamental question of why are these Black-Led Service Providers more suited to provide quality service as compared to some of the White-Led Service Providers? Bailey and others state “Structural racism refers to the totality of ways in which societies foster racial discrimination through mutually reinforcing systems of housing, education, employment, earnings, benefits, credit, media, health care, and criminal justice”. (Bailey, 2017) Although structural racism and unequal treatment remain as contributing factors to higher rates of disease and death among Blacks; they argue that by focusing on the impact of structural racism, it can be used as an approach for advancing health equity and improving population health. (Bailey, 2017: Huerto, 2020) Collectively Black physicians and researchers are providing evidence that if Black patients are seen by Black doctors had more improved health outcomes. Specifically, in a randomize study conducted at Stanford University paired Black men in Oakland with Black or non-Black doctors. They found that Black patients seen by Black doctors agreed to more, and more invasive, preventive services than those seen by non-Black doctors. (Torres, 2018) And this effect seemed to be driven by better communication and more trust. The researchers point to evidence suggesting that better trust and communication between Black doctors and Black patients was what made the difference. (Torres, 2018) Similarly, the quality of care by Black doctors or Black-Led Service Providers was not questionable or noted as substandard. However, Black doctors only account for 5% of the physician work force, like Black-Led HIV Service Provider only account for less than 4% of total HIV funding in Illinois. More importantly as previously stated Blacks in Illinois for the past 15 years continue to be disproportionately infected with HIV as White-Led Providers have received more funding for their treatment during the same time. Thusly structural racism and unequal treatment persist.

Recommendations

The following are possible recommendations that may provide more clarity and possible strategies for resolving these unfair practices.

An additional in-dept analysis of racism is through the utilization of The Critical Race Theory (CRT). CRT represents a broad social scientific approach on how to study race, racism, and society. In the 1980s, Kimberlé Crenshaw and Derrick Bell promoted the CRT as a notion within the subfield of critical legal studies. They referred to the fact that despite the civil rights legislation in the US, the social and economic conditions of Blacks (African Americans) had not improved. “Through the concept of ‘interest convergence’, Bell even claimed that the reason why civil rights legislation passed in the first place was largely because it served the interests of America’s White elite.” (Bonilla-Silva, 2015). Another example of CRT was illustrated in the education field, whereas Jones presents evidence in his dissertation on how similar to pre-segregation era, in the post-segregation era White teachers are still able to teach both Black and White students at Black or White schools but, Black teachers were only able to teach at predominated Black schools, thusly exemplifying economic disadvantages for Black teachers and cultural disadvantages for White students. ( Jones, 2016).

In Bonilla-Silva review of CRT, she offers an insight of invaluable set of literature for scholars of race and society to engage with. As a social scientific approach, she encourages us to appreciate how races are constructed into hierarchies, with societal resources distributed unequally across this hierarchy. She goes on to state “in a time often declared as ‘post-racial’, critical race theory helps remind us that race is omnirelevant – it may not always be the single determining factor of a given inequality, nor even the most important one, but ‘race’ is fundamental to understanding current regimes of inequality, and that analyses of inequality and its inverse (privilege and domination), are incomplete without a systematic discussion of race”. (Bonilla-Silva, 2015)

Although Bonilla-Silva builds on the work of Crenshaw and Bell she has recently redeveloped the tenets of CRT to the following:

• Racism is ‘embedded in the structure of society’.

• Racism has a ‘material foundation’.

• Racism changes and develops over different times.

• Racism is often ascribed a degree of rationality.

• Racism has a contemporary basis.

The author recommends Cultural Humility sessions for the leadership at IDPH and CDPH. The responses from the leadership of the health departments demonstrates a culture of bias, barriers, and stigma. McGee-Avila writes about Cultural Humility for health providers and what it means to have an in-depth understanding of structural inequities and how they manifest in the patient/provider relationships. It also compels one to step outside of own identity and be open to other’s identities by acknowledging they have the authority over their owned lived experiences. Although in this instance what connects providers are the services surrounding HIV infected and affected people, but disease identity is not at the forefront when one is experiencing racism, poverty, lack of housing, food insecurities, or stigma. It is more about understanding their complexities daily. Without being stereotypical, Black Providers bring a unique perspective to those they serve and may have the platform to give voice to those who are on mute. “Cultural Humility isn’t about studying someone to better figure them out. It’s about acknowledging power imbalances, developing partnerships, and practicing self-reflection. When we integrate these concepts in the delivery of care, we lift-up the voices of our patients, says McGee-Avila. (2018)

To advance health equity in the long term, leaders need to address these community-level factors that impact historically marginalized groups at disproportionate rates. To start, leaders need to understand structural inequities and why provider organizations have a role to play. “Health disparities typically result from two factors: inequitable care delivery and the impact of unmet social needs. Maintaining a diverse workforce and an inclusive culture is a key first step to improving equitable care delivery”. (Simmons, & Sullivan, 2021).

One of the BLACHE members questioned how can ‘we’ strengthen the community when leadership doesn’t provide the resource to those who come from those communities? For example, what if people living with HIV left their prevention, interventions, treatments, and research up to others non-infected people, would the progress that has been made come to fruition. The formation of National Minority AIDS Council (NMAC) was due to a denial by one of the leading public health associations to not have any people of color on their first ever panel on AIDS. During that meeting in 1986 Craig Harris, an African American gay man living with AIDS, announced the formation of NMAC during that panel discussion after he rushed the stage, shouting «I WILL BE HEARD» and took the microphone away from Dr. Mery Silverman, then the San Francisco Health Commissioner. (NMAC History, 2018)

The Building Leaders of Color (BLOC) program works to increase the number of Persons of Color Living with HIV who are prepared to engage in leadership roles and activities related to HIV service delivery. In 2019, the increased visibility of the program led to a larger number of applicants for programming. Additional community trainings were requested and provided. This is relevant because Harris, Kawata and others started NMAC out of the need to have White leadership, specifically a health commissioner acknowledge the unfair treatment and exclusion of people of color. Thirty-four years later, BLACHE must do the same, and reclaim their right to receive equitable funding, especially from health departments using federal funding sources. How can Health Equity be a goal when unfair and unequal funding for Service Providers persist? An additional recommendation is for all governmental agencies (more specifically IDPH and CDPH) to post on their websites the names of all registered HIV Service Providers, race/ethnicity of the agency (denoted by board CEO/ED or other leadership criteria), funding source and amount received by year. This type of documentation will provide more transparency to a process that is presently difficult to access. In other words, this information should be readily available to the public without any special requests. Moving forward both BLACHE members and state and local governments should seek out guidance from federal regulators like Department of Labor, HRSA and CDC. Women’s Bureau Director Wendy Chun-Hoon. “Engaging stakeholders as we seek to make sure our actions and policies support workers across many identities and experiences, including gender, race, sexuality, ability, religion, geography and wealth, is a core priority that ensures better employment outcomes for all.” “The Office of Federal Contract Compliance Programs plays a vital role in rooting out entrenched employment inequities and ensures that federal contractors – which employ about 25 percent of the U.S. workforce – fulfill their contractual promise and deliver equal opportunity and affirmative action in their workplaces,” said Office of Federal Contract Compliance Programs Director Jenny R. Yang. (Department of Labor, 2021)

The author offers a four-prong approach for guidance as to not only hold people accountable, but also determine what are the liabilities, repercussions, and right perspectives of the situations. This case study provided an exploration of the core moral issues attributed to racism and to brought forth a voice that may benefit other Black-Led Service Providers and Black health professionals experiencing inequities as it relates to the allocations of governmental funding. Weather it is ‘Ending the HIV Epidemic’, ‘Getting to Zero’ or restructuring the US failed healthcare system, Black people must continue to move the needle by advocating for what is needed, Economic Parity, Health Equity and a Better Quality of Life.