# Presentation: 689213

## Disparities in the Financing and Delivery of HIV Care in the US 

**Julia Hidalgo, ScD, MSW, MPH**
**Positive Outcomes, Inc.**
**& The George Washington University **
**School of Public Health and Health Services**

## This presentation was supported by funds from the Health Resources and Services Administration, HIV/AIDS Bureau. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Health Resources and Services Administration. 

**For additional information contact:**
**Positive Outcomes, Inc.**
**117 Jordan Taylor Lane ******** Harwood MD 20776**
**(443) 203-0305 (T) ******** (443) 203-2306  (F)**
**www.positiveoutcomes.net**
**julia.hidalgo@positiveoutcomes.net**

## Purpose of the Presentation

**Overview of national and local studies conducted at GWU and POI related to disparities in:**
**Financing of HIV care by federal, state, and local government and other funders**
**The ability of HIV planning bodies to address broader systemic environmental forces**
**The organization of systems of HIV care in communities and availability of core and enabling services**
**Capacity of organizations to meet current and future demand for HIV care**

## DISPARITIES IN HIV FINANCING IN THE US

## Factors Contributing to Financial Disparities

**Highly variable publicly funded insurance coverage for medically indigent populations among States**
**State insurance and pharmacy pools,medically needy programs, Medicaid, SCHIP, publicly funded hospital districts**
**Rates of employer-supported health insurance vary by industry**
**Due to Medicaid and welfare reform, Medicaid programs vary significantly in eligibility criteria, coverage, organization, and payment structures**
**Highly variable application of SSI disability criteria from state to state**

## Factors Contributing to Financial Disparities

**CARE Act structure also contributes to financial disparities**
**Title I and II formulas have resulted in significant variance in per capita funds, with significantly lower funds available to rural HIV infected populations**
**ADAP shortfalls are linked to lack of other funds, such as from Title I and State revenue, to purchase drugs**
**The “generosity” of Medicaid programs has also been strongly linked to financial disparities, as Title I and II grantee in states with more generous Medicaid coverage are able to allocate more to drugs and psychosocial support services**

## Factors Contributing to Financial Disparities

**The amount of per capita funds allocated to HIV by State, county, and city governments vary significantly**
**Lack of State and local support for ADAPs has  contributed to financial shortfalls**
**State and local government budgets have been significantly impacted by the weakened economy and an eroding tax base**

## Factors Contributing to Financial Disparities

**State and local public health systems, commonly a source of HIV indigent care funding, are experiencing significant budget decreases and unfunded mandates**
**Some States are experiencing difficulty meeting the CARE Act Title II match requirement**
**Some States and Title I EMAs are experiencing difficulty meeting their CARE Act maintenance of effort requirement**

## HIV PLANNING AND RESOURCE ALLOCATION

## HIV Planning

**Multiple, sometimes poorly coordinated, planning efforts are being undertaken at the national, State, regional, and local levels**
**Planning bodies and related activities include: **
**Title I planning councils, care consortia, community prevention, ADAP advisory groups, HIV housing planning groups, Statewide Coordinated Statement of Needs groups, various committees and subcommittees, and public hearings**
**CARE Act providers tend to participate in multiple planning efforts simultaneously**

## HIV Planning

**CARE Act grantees and HIV planning bodies tend to focus on needs assessment, priority setting, and procuring funds directly under their authority**
**CARE Act providers report that there is little time, energy, or legal authority to focus on comprehensive systems***** *****planning**
**Participation in HIV care planning efforts is reported to be extremely time consuming, politicized, polarizing, of limited direct benefit to the operations of HIV care programs, and distracts care providers from their patient or client responsibilities**
**HIV planning tends to be specific to individual titles, sometimes with poor communication between grantees of various titles**

## HIV Planning

**HRSA conflict of interest policies often result in inadequate direct representation of medical providers, substance abuse treatment, and mental health providers; resulting in a vacuum of their input into the planning process**
**Attendance of representatives from broader systems (e.g., Medicaid, mental health and substance abuse treatment systems, etc.) at planning meetings can be inconsistent**
**Terms limits placed on Planning Council members sometimes results in the loss of expertise and institutional memory**

## HIV Planning

**With increasing representation of consumers and agencies not receiving CARE Act funds, basic training is needed in a wide array of topics **
**Timely information needed to address systemic issues commonly may not be available or is focused on specific segments of the HIV infected population, such as individuals already in HIV care systems funded by the CARE Act**
**HIV care planning results in significant disparities in funding for HIV care, therapeutics, case management, housing, and support services from community to community**

## HIV Planning

**S****imultaneously with HIV planning activities, there are other concurrent planning efforts focused on broader policy and programmatic topics (e.g., Medicaid, substance abuse treatment, mental health systems, housing)**
**Issues related to HIV service delivery and financing are not commonly a major consideration in the planning, design, and implementation of broader public financing**
**Policy makers must address the needs of many interest groups simultaneously and are reluctant to establish programs or policies solely for HIV-infected individuals**

## HIV Planning

**Systemic health care market and economic forces have a significant impact on HIV care and financing **
**Significant State budget deficits, health care reform, increasing adoption of managed care, decreased funding for the public health system, nursing shortage, health personnel salary increases, welfare reform, significant decline in charitable giving to the non-profit sector**
**Such systemic issues are not within the authority of HIV planning bodies or CARE Act grantees**
**These issues often are not considered by HIV planning bodies because their specific impact on local HIV infected populations is unclear or too complex**
**Policymaking, program design and implementation, and financing are commonly undertaken by the legislative and regulatory process, by appointed officials, or by program managers outside of the community planning environment**

## HIV Planning: The Future?

**Reduction in the types of HIV services funded**
**Establishment of a set of core services**
**Focus on medical and pharmaceutical services, with a reduction in support services**
**Rationing of HIV care through cost containment measures: narrowed eligibility criteria, waiting lists**
**Reduction in capacity**
**Asking care providers to do more with less**
**Are planning groups able to make rational, ethical decisions?**

## DISPARITIES IN THE ORGANIZATION OF HIV CARE SYSTEMS

## MOVING TOWARDS AN INTEGRATED HIV CARE SYSTEM 

**Current **
**System**

**Linked **
**System**

**Integrated **
**System**

## Disparities In The Organization of HIV Care Systems

**Significant disparities exist geographically in the number and type of HIV care providers**
**Duplication of effort and lack of coordination is common in many large HIV care systems**
**The extent of coordination and collaboration varies significantly in HIV care systems, with high levels of inefficiency**
**In some communities, providers receiving titles of the CARE Act function in separate systems**
**Case management and clinical providers often function in “parallel universes”**

## Disparities In The Organization of HIV Care Systems

**High turnover is reported, salaries are not competitive, and agencies are “recycling” personnel**
**Smaller CBOs tend to be poorly integrated into the HIV care systems of many communities**
**They are relatively new, have not established relationships with other providers, and their staff may not be training in care coordination and the clinical aspects of HIV treatment**
**Non-HIV care systems (e.g., housing, pantry, drug treatment, and mental health) are often not used as sources of care**
**HIV providers are not familiar with them or perceive them as being inappropriate for HIV infected clients**

## ORGANIZATIONAL CHALLENGES EXPERIENCED BY HIV PROVIDERS IN REDUCING DISPARITIES

## HIV Clinics: Financial Challenges Encountered

**Health care market and economic forces have had the greatest impact on HIV clinical providers because they are less likely than other HIV providers to be funded for their operating costs by CARE Act funds**
**Some HIV clinics rely heavily on institutional support for salary support, administrative infrastructure, rent, and other operating costs**
**Institutions in which HIV clinical programs operate are increasing experiencing significant budgetary constraints that impact the resources available to HIV outpatient clinics, infectious disease departments, and other sites in which large numbers of HIV infected patients are in care**

## HIV Clinics: Financial Challenges Encountered

**Among group practices, demands for increased productivity and third party revenue results in substantial pressure on individual clinicians whose HIV infected patients require significantly longer and more intensive visits than other patients**
**Clinical research funds, historically used by HIV outpatient clinics to support clinical salaries, may not available or are no longer a significant portion of clinics’ operating budgets**
**Public and commercial third party fee-for-service rates and sub-capitated contractual arrangements often do not cover operating costs of HIV outpatient departments, community clinics, or clinicians in private practice**

## HIV Clinics: Financial Challenges Encountered

**Significantly growing intensity and length of routine HIV primary and specialty visits are not reflected in most insurance systems**
**A wide array of services commonly provided in HIV clinical settings are not covered by third party payers**
**Clinics and providers increasingly must address and adapt to widely divergent payment structures, benefit coverage policies, annual and lifetime benefits ceilings, prior authorization policies, and eligibility determination processes**

## HIV Clinics: Financial Challenges Encountered

**As their patients enroll and disenroll in various insurance systems, coverage may fluctuate significantly and result in gaps in coverage for essential HIV therapeutics, laboratory testing, etc.**
**External health care market and economic forces are compounded in some communities by limited allocation of CARE Act funds for HIV primary care and specialty services**
**Without grant funds for salaries and other operating costs, clinics often do not have a financial cushion to soften the impact of inadequate third party insurance payment**

## HIV Clinics: Financial Challenges Encountered

**Increasingly, application of HAB payer of last resort requirements has resulted in insufficient operating funds as third party insurance payments do not cover costs**
**The majority of HIV primary care and specialty care programs responding to a national consultation report that they do not have sufficient funding to meet the needs of their current patient load**
**Their capacity to meet the needs of their current patient loads are impacted by the need for additional clinical and non-clinical personnel, inadequate clinical space, and other resources**

## HIV Psychosocial Support Programs: Financial Challenges Encountered

**HIV social support programs commonly do not provide services that are covered by Medicaid or other insurers**
**Support program staff tend not to be aware of what services are covered, do not have billing systems in place, and are not enrolled as providers with Medicaid or other insurers**
**As a result, psychosocial providers are heavily dependent upon CARE Act funds and charitable donations**
**Report that they are having difficulty expanding their capacity due to insufficient operating funds, lack of expertise among agency leaders, and high turn over**

## One approach to addressing racial/ethnic disparities in HIV service utilization has been to increase the number of HIV minority providers and their capacity

**Three comparison groups have been studied by POI in a series of nationally representative surveys**
**Minority providers**
**“****Traditional providers” that report that they have historically served minority patients or clients but do not meet the minority provider criteria**
**“****Other providers” that do not meet the minority or traditional provider criteria**

## How Providers Meet The Minority Provider Definition

## The minority provider criteria that agencies meet are associated with their organizational setting

**About one-half of minority CBOs, behavioral health agencies, non-governmental health agencies, and housing programs meet the minority provider criteria based on their boards *****and***** staff**
**About three-quarters of minority HIV providers located in health departments meet the criteria based on their staffing alone**

## Significant geographic differences were identified in the proportion of CARE Act providers that meet the minority provider criteria

**Southern agencies are 2.3 times more likely than Midwestern agencies to be minority providers**

## Minority providers tend to be more likely to be located in a Title I EMA than elsewhere

**About three-quarters of minority providers are located in EMAs**

## Minority providers operate in a variety of organizational settings

## CARE Act minority providers offer a wide array of services 

**40% of agencies providing clinical services are minority providers compared to 45% of case management agencies and 30% of psychosocial agencies **
**Minority providers are more likely than their counterparts to provide wrap around services **
**Case management, child day care, drug treatment, health education and risk reduction, treatment adherence counseling, HIV counseling and testing, outreach, HIV prevention, support groups, and transportation**
**Minority providers are likely than their counterparts to provide other support services**
**Referrals to clinical trials, developmental assessment, housing assistance, vocational services, advocacy, translation services, and complementary services**

## HIV agencies commonly manage multiple CARE Act funding streams

**40% of agencies in EMA report receiving funds from two or more titles of the CARE Act, compared to 12% of agencies outside of EMAs**
**In EMAs, 60% of agencies report that Title I is their only source of CARE Act funds. Outside of EMAs, 67% of agencies report that Title II is their only source**
**Minority providers outside of EMAs are more likely to receive funds from more than one title of the CARE Act; they are more likely than their counterparts to receive Titles III or IV funds**

## CARE Act providers tend to report that funding and staffing are inadequate

**63% report that they do not have enough funding to meet the *****current***** needs of their clients**
**47% report that they do not have enough direct service staff to meet their clients’ needs**
**Minority providers are more likely than other providers to report that their program does not have enough: **
**Direct service staff (55% versus 41%) **
**Non-direct service staff (53% versus 38%)**
**Physical capacity (51% versus 38%)**
**Non-personnel resources (50% versus 35%)  **
**Funding for their HIV program (70% versus 58%)**

## The most frequently identified unmet needs do not vary significantly between minority and non-minority providers

**A****mong agencies needing direct service staff, case managers, nurses, and doctors are the most commonly needed**
**Clerical, support, and data entry personnel are the most commonly needed non-direct service staff**
**Office space, storage space, and interview/counseling space are the most common unmet physical capacity requirements**
**Computers, printers, and software are the most commonly needed non-personnel resources**
**Funding for direct services, operations, and more staff are the most common funding needs**

## Participation rates of minority providers vary by type of planning body

**Minority providers are more likely than their counterparts to participate in state HIV/AIDS prevention planning groups, HIV housing planning groups, and HIV/AIDS public hearings**
**Minority providers are less likely to participate in Title II consortia than their counterparts**
**In EMAs, minority provider status is not associated with participation in Planning Councils**
**Outside EMAs, minority providers are less likely to participate in consortia than other providers**