Comprehensive AIDS Resources Emergency Research Articles

Quantitative Evidence of Leadership in Collaborative Governance: The South Florida EMAs’ Experience with HIV/AIDS

The enactment of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act in 1990 enabled establishment of Health Services Planning Councils across the U.S. in areas disproportionately impacted to help provide care and treatment to infected and affected populations. These Councils impacted areas called Eligible Metropolitan Areas (EMAs) that used collaborative governance model to complement implementation efforts. To promote cross sector stakeholders’ representation and participation in collaborative governance, these Councils relied on collaborative leaders to ensure effectiveness, collaborative success, and sustainability of outcomes. Using quantitative evidence from surveys on dimensions of collaborative governance, this research analyzes the efforts of leaders in collaborative governance in the Councils of Broward and Palm Beach Counties of South Florida. The results highlight similarities between the two Councils in terms of the leadership’s contributions to deliberativeness, consensus, and collaboration. The results also accentuate the iterative and multi-dimensional nature of collaborative governance as a viable postmodern alternative to traditional bureaucratic governance in collective problem solving with integrated collaborative leadership to foster multi stakeholder engagements, and exemplify local governments’ constructive efforts as part of the overall national response to issues surrounding HIV/AIDS. Keywords: Leadership, HIV/AIDS, Collaborative Governance, Health Services, Collaborative Process, Outputs/Outcomes DOI: 10.7176/JESD/11-8-01 Publication date: April 30 th 2020

Paying for Drugs After the Medicare Part D Beneficiary Reaches the Catastrophic Limit: Lessons on Cost Sharing from Other US Policy Partnerships Between Government and Commercial Industry.

In 2018, the Medicare Part D catastrophic threshold is $5000 in out-of-pocket total drug spending incurred by the beneficiary. Above this, Medicare pays 80%, prescription drug plans (PDPs) pay 15%, and beneficiaries pay a 5% copay. However, recent growth in catastrophic spending is caused by expensive specialty drugs. The 5% copay, on top of out-of-pocket spending, could result in beneficiaries not accessing specialty drugs. To assist beneficiaries, the Medicare Payment Advisory Commission (MedPAC) proposes to eliminate beneficiary catastrophic cost sharing, while PDPs pay 80% and Medicare pays 20%. Our objective was to assess other government cost-sharing approaches and consider how they would affect pharmaceutical access, PDP Part D incentives, and pharmaceutical innovation. We reviewed published literature and government reports on cost sharing between US government divisions or between government and private commercial entities. We discussed their cost-sharing applicability to Part D. We found that the US government has utilized numerous cost-sharing approaches to enhance public–private partnerships. We reviewed four cost-sharing arrangements and their applicability to Medicare: the Byrd-Bond Amendment to the Clean Air Act—Medicare bulk purchases drugs costing $8000 + ; North Atlantic Treaty Organization (NATO)—cost sharing based on high-risk markets; the Ryan White Ryan White Comprehensive AIDS Resources Emergency (CARE) Act—grants to PDPs in high-risk markets and grants to beneficiaries who cannot afford drugs; and the Department of Veterans Affairs—drug price negotiation for expensive drugs. In conclusion, a variety of federal cost-sharing approaches provide precedent for altering PDP cost sharing. The government tends to prefer options that have been tried elsewhere.

Ryan White CARE Act Part D: Matches and Gaps in Political Commitment and Local Implementation

This article demonstrates the opportunities for and challenges of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act Part D to implementing its mandate for comprehensive family-centered systems of care for women, infants, children, and youth with HIV/AIDS. Part D legislation should promote practices addressing families with models for basic security, judiciously embrace those universal public health policies aiming to improve children's overall welfare, and consistently repudiate those policies infringing on human rights of women infected with HIV, or ignoring their children's basic needs. The proposed revisions to Part D implementation may renew its political commitment to serving the needs of families who are HIV affected.

The Impact of the Ryan White Treatment Modernization Act on Social Work within the Field of HIV/AIDS Service Provision

The face of AIDS in the United States has changed dramatically over the course of the nearly three decades since the disease was first identified. With the advent of protease inhibitors, antiretroviral therapy, and other life-sustaining medications, an HIV-positive diagnosis is no longer viewed as a death sentence (Clinton, 2003); rather, AIDS is considered more of a chronic disease, not unlike, one might argue, multiple sclerosis or diabetes: a manageable, if not curable, medical condition. But anyone making such an argument would be wrong. However, unlike other chronic diseases, HIV/ AIDS is not now, nor has it ever been, a purely medical issue; it is a social issue, a political issue, a cultural issue, an economic issue, and, perhaps above all, a personal issue. A diagnosis of HIV/AIDS invites stigma, discrimination, and blame and brings fear, anxiety, depression, and isolation. The growing prevalence of HIV/AIDS among impoverished and minority populations translates into enhanced vulnerability for already marginalized, at-risk groups. Yet, despite the multifaceted socioeconomic and psychosocial components of this disease (Bogart et al., 2000), U.S. society is tending more and more toward a purely medical perception of HIV/AIDS, a perception that threatens the role of social workers within the field of HIV/AIDS service provision. Nowhere is this trend more apparent than in the 2006 Ryan White Treatment Modernization Act (RWTMA). In 2006, President George W. Bush signed into law the most recent reauthorization of what was previously known as the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. Originally signed into law in 1990 by President George H.W. Bush, the Ryan White CARE Act sought to make HIV/AIDS treatment, care, and medication available to low-income and no-income individuals. FROM CARE TO TREATMENT MODERNIZATION The 2006 reauthorization (RWTMA) significantly altered the CARE Act's language and funding, resulting in significant changes to HIV/AIDS service provision in the United States. However, although agencies across the country are adapting to the changes, the social work literature has yet to address the effects of the reauthorization on social work as a profession. The RWTMA places heightened emphasis on the medical aspects of HIV/AIDS service provision, and psychosocial aspects of service provision may be falling by the wayside. Thus, research is needed to determine the effect that the RWTMA is having on the profession of social work and on HIV/AIDS clients. In April 2006, a U.S. Government Accountability Office (GAO) study found that AIDS Drug Assistance Program (ADAP) eligibility and drug formularies varied from state to state (GAO, 2006); furthermore, some state programs were paying more than necessary for medications and, in some states, less than 25 percent of Ryan White funding was being used to provide medical (Buchanan & Hatcher, 2007). It is not clear how many states were distributing their funds in this way, nor is it clear how the funding was being distributed if not for core medical services. However, the GAO report prompted the Bush administration to propose changes to the RyanWhite CARE Act, and the resulting RWTMA mandates that states use not less than 75 percent of funding to provide core medical services that are needed in the state for individuals with HIV/AIDS who are identified and eligible under this title (Duke, 2000b). Under the RWTMA, core medical services are defined as outpatient and ambulatory health services; ADAP treatments; AIDS pharmaceutical assistance; oral health care; early intervention services; health insurance premium and cost-sharing assistance for low-income individuals; home health care; medical nutrition therapy; hospice services; home- and community-based health services; mental health services; substance abuse outpatient care; and medical case management, including treatment adherence services. …

New Clinical Guideline for Hoarseness Offers Assessment and Treatment Advice

(http://www.ahrq.gov/clinic/uspstf /uspshepbpg.htm). The USPSTF stance against routine screening for HBV in asymptomatic individuals conflicts with CDC’s recommendations for more comprehensive screening for HBV, updated in 2008 (http://www.cdc.gov/mmwr/preview /mmwrhtml/rr5708a1.htm). Previously, the agency had recommended routine testing for pregnant women, infants of infected mothers, household contacts and sex partners of infected individuals, persons born in countries where 8% or more of the population is infected, persons who may expose health workers to HBV, and those with HIV infection. The agency has expanded this list to include persons born in countries where 2% or more of the population is infected, men who have sex with men, and injection drug users. The USPSTF recommendations for HCV have also been debated. Dr Miriam Alter addressed this issue and the need for greater testing in a 2005 editorial (http://www.aafp.org/afp /20050815/editorials.html). Weinbaum said the CDC is currently revamping its HCV recommendations. Once patients with viral hepatitis infection are identified, the next challenge is ensuring access to care because many people in high-risk groups are likely to be uninsured. Attendees at the meetingdebatedwhether theRyanWhite Comprehensive AIDS Resources Emergency (CARE) Act, which provides funding for community-based HIV treatment programs, should be expanded to include viral hepatitis. Others argued for greater coverage through comprehensive health care reform. The CDC has commissioned the Institute of Medicine to recommend ways to further reduce the incidence of viral hepatitis infection and to mitigate complications in those with chronic infection. The report is due out in 2010 (http: //www.iom.edu/?ID=59310).

Compassionate conservatism: federal funding for the Ryan White CARE Act during the Bush administration.

President George W. Bush has proposed modest increases, when he has proposed any at all, in funding for the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act during his administration, and Congress has appropriated little funding increase since fiscal year 2004. Growing numbers of Americans living with HIV or AIDS, 40 000 people newly infected with HIV each year, and Centers for Disease Control and Prevention-recommended efforts to identify people with undiagnosed HIV infection indicate an increasing need for services funded by CARE Act programs. Inadequate CARE Act funding harms the most vulnerable people with HIV.

Using Data to Make Decisions: Planning HIV/AIDS Care Under the Ryan White CARE Act

This article describes the challenges of using data to plan and fund HIV/AIDS care services for underserved populations under the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. It also outlines methods that have been developed by the Health Resources and Services Administration of the U.S. Department of Health and Human Services to assist community planning groups in using data to decide how to target limited federal resources under the CARE Act. Use of CARE Act dollars is guided largely by an array of legislatively identified priority areas, such as targeting of low income HIV–infected individuals who are not in care for their HIV disease. CARE Act program guidance covers the use of epidemiologic HIV and AIDS case data, quantification of unmet need for HIV care, guidance on making objective decisions on priorities for funding within a community planning process, and other instructions on the use of data in making decisions.

Quality of HIV Care Provided by Nurse Practitioners, Physician Assistants, and Physicians

Nurse practitioners (NPs) and physician assistants (PAs) are primary care providers for patients with HIV in some clinics, but little is known about the quality of care that they provide. To compare the quality of care provided by NPs and PAs with that provided by physicians. Cross-sectional analysis. 68 HIV care sites, funded by Ryan White Comprehensive AIDS Resources Emergency (CARE) Act Title III, in 30 different states. The authors surveyed 243 clinicians (177 physicians and 66 NPs and PAs) and reviewed medical records of 6651 persons with HIV or AIDS. 8 quality-of-care measures assessed by medical record review. After adjustments for patient characteristics, 6 of the 8 quality measures did not statistically significantly differ between NPs and PAs and either infectious disease specialists or generalist HIV experts. Adjusted rates of purified protein derivative testing and Papanicolaou smears were statistically significantly higher for NPs and PAs (0.63 and 0.71, respectively) than for infectious disease specialists (0.53 [P = 0.007] and 0.56 [P = 0.001], respectively) or generalist HIV experts (0.47 [P < 0.001] and 0.62 [P = 0.025], respectively). Nurse practitioners and PAs had statistically significantly higher performance scores than generalist non-HIV experts on 6 of the 8 quality measures. These results may not be generalizable to care settings where on-site physician HIV experts are not accessible or to measures of more complex clinical processes. For the measures examined, the quality of HIV care provided by NPs and PAs was similar to that of physician HIV experts and generally better than physician non-HIV experts. Nurse practitioners and PAs can provide high-quality care for persons with HIV. Preconditions for this level of performance include high levels of experience, focus on a single condition, and either participation in teams or other easy access to physicians and other clinicians with HIV expertise.

Physician Specialization and the Quality of Care for Human Immunodeficiency Virus Infection

There is debate over the types of physicians who should treat patients with complex chronic medical conditions such as human immunodeficiency virus (HIV) infection. We sought to assess the relationship between specialty training and expertise and the quality of care delivered to patients with HIV infection. We selected random samples of HIV-infected patients receiving care at 64 Ryan White CARE (Comprehensive AIDS Resources Emergency) Act-funded clinics throughout the country and their primary HIV physicians for an observational cohort study in which quality-of-care measures were assessed by medical record review. We studied 5247 patients linked to 177 physicians who responded to a survey. Fifty-eight percent of the physicians were general medicine physicians ("generalists") and 42% were infectious diseases specialists. Sixty-three percent of the generalists (37% overall) considered themselves expert in HIV care. In hierarchical logistic regression models that controlled for patient characteristics, infectious diseases physicians and expert generalists had similar performance. In contrast, nonexpert generalists delivered lower quality care. More than 80% of the appropriate patients being cared for by infectious diseases physicians and expert generalists were receiving highly active antiretroviral therapy, compared with 73% of appropriate patients of nonexpert generalists (P<.001). Physicians with fewer than 20 patients with active HIV had fewer appropriate patients on highly active antiretroviral therapy (73% vs 82% of physicians with >/=20 such patients, P = .04) and saw patients less frequently. These findings extend previous work by examining a range of quality-of-care measures and suggest that generalists with appropriate experience and expertise in HIV care can provide high-quality care to patients with this complex chronic illness.

Trends and Responsiveness in National Resource Allocation for Needed HIV Services

A recent study conducted by the Institute of Medicine concluded that there are approximately 1,200 to 1,400 avoidable deaths per year in the U.S. among people living with HIV (PLWH) who do not have health insurance (Institute of Medicine, 2002). The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act was passed by the U.S. Congress in 1990 to provide funding for community-based HIV care services for uninsured and underinsured PLWH--the only Federal program to provide such funding. There is substantial local autonomy in the allocation of CARE Act funds, with planning processes that take place in both States and metropolitan areas. The purpose of this study is to examine trends in the allocation of such funds from 1996 through 2000, the first five years during which effective antiretroviral medications were available for HIV. The study also considers whether these trends were responsive to the evolving modalities of care and the service needs of a changing population of PLWH.

Associations between HIV-positive individuals' receipt of ancillary services and medical care receipt and retention

This study examines associations between HIV-positive individuals' receipt of ancillary services and their receipt of and retention in primary medical care. Ancillary care services examined include case management, mental health and substance abuse treatment/counseling, advocacy, respite and buddy/companion services, as well as food, housing, emergency financial assistance, and transportation. The selection criterion used was the receipt of care from January-June 1997 at selected facilities receiving funding under the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, a federally funded safety net programme in the USA. The receipt of each ancillary service was associated with the receipt of any primary medical care from a safety net provider. All ancillary services were more strongly associated with primary care receipt than with retention in care or the mean number of primary care visits per year. Mental health and substance abuse treatment/counselling, client advocacy, respite care and buddy/companion services all had significant associations with all primary medical care measures. This is the first time in one study that the primary medical and ancillary services received by all clients at safety net-funded providers from multiple cities and states have been examined. All types of safety net providers, from the largest medical centre to the smallest community-based organization, are represented in this study. The patterns seen here are similar to the findings from the other, geographically more restricted, studies reported on in this volume.

Provider Views of the Support Service Needs of Male Primary Caretakers of HIV/AIDS-Infected and -Affected Children: A Needs Assessment

The number of male primary caretakers (biological fathers and other men) of HIV/AIDS-infected and -affected children in the United States is substantial, and will increase as more women become infected and die, and more fathers assume parenting responsibilities. Many male primary caretakers (MPCs) are biological fathers, some of whom are infected, living alone with one or more children, caring for other infected and affected children, and without the emotional support of a female caretaker. These MPCs experience anxiety, depression, and grief. In this unique, exploratory needs assessment about the support service needs of MPCs, the authors surveyed 34 service providers that are involved in Title IV programs of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. Providers report that MPCs have special needs for emotional support, networking, child care, and parenting skills training that are being addressed only partially, if at all. Providers serving infected and affected children and their families should identify MPCs and address their service needs. More men may succeed as caretakers of infected and affected children if programs gear their services to the specific challenges these men face. Additional research is crucial given the number who can be expected to need these services in the future.

Delivering HIV services to vulnerable populations: a review of CARE Act-funded research.

This article summarizes key findings from evaluation and research studies that have received financial support from the HIV/AIDS Bureau of the Health Resources and Services Administration or from Ryan White Comprehensive AIDS Resources Emergency (CARE) Act grantees. These studies suggest that the CARE Act has improved but not equalized service accessibility, quality, and outcomes for different populations living with HIV disease. Evaluations of access to highly active antiretroviral therapy (HAART) found that uninsured patients, women, people of color, and injection drug users waited much longer than others to receive the new therapies. These disparities were not uniform across study sites, suggesting that clinic characteristics and geographic location have a major influence on prescribing patterns. Once patients gained access to HAART, health insurance status made little difference in clinical outcomes.

Developing a performance management system for a Federal public health program: the Ryan White CARE ACT Titles I and II

Both public and private sector organizations are increasingly being called upon to measure performance. In the public sector, this trend is evidenced by such legislative initiatives as the Government Performance and Results Act (GPRA). Yet performance measurement presents complex analytic and behavioral challenges and few models exist to guide policy makers and program managers in their attempts to respond to legislative mandates and market pressures for accountability through performance measurement. This article describes one approach to introducing performance measurement into a large Federal health program, the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, in response to GPRA. It places performance measurement within the broader concept of performance management. This approach is particularly applicable to large grant programs characterized by significant autonomy and variation at the local level. The article also discusses some of the characteristics of the HIV/AIDS epidemic which present unique challenges to performance measurement.

Who receives Ryan White CARE Act services? A demographic comparison of CARE act clients and the general AIDS population.

This study examines the extent to which health and social service providers funded by the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act serve women, minorities, and other vulnerable populations emphasized by the legislation. Demographic characteristics of AIDS-diagnosed clients served by CARE Act-funded providers in four metropolitan areas and two states are compared with Centers for Disease Control and Prevention estimates of AIDS prevalence. Clients of CARE Act-funded providers tend to reflect the demographics of local HIV/AIDS epidemics. Where differences exist, CARE Act clients are more likely to be women and minorities and less likely to be injecting drug users. CARE Act-funded providers are effectively reaching most medically underserved populations.

Determining needs and setting priorities for HIV-affected and HIV-infected persons: northeast Ohio and San Diego.

The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act of 1991 requires that communities receiving Title I funding engage in a needs assessment and priority process to guide the allocation of those funds to various services within the local community. This paper reports on the process and results of the needs assessments in northeast Ohio and San Diego County for 1996-1997 and 1998. Data from northeast Ohio's 1998 needs assessment indicated significant differences between whites and nonwhites in the utilization of HIV specialist care, HIV-related prescription medications such as antiretrovirals, and health insurance. A need for additional dental care, complementary therapies, housing, and assistance with utility payments was found in both geographic areas. Consumer participation in San Diego's health department-based needs assessment process was more extensive than in northeast Ohio's academic-based approach but was also related to increased community-borne expense.

Promises in the plague: passage of the Ryan White Comprehensive AIDS Resources Emergency Act as a case study for legislative action.

In a conservative political climate, it is very important that social workers and others who are concerned with social welfare understand how to affect social change through legislative advocacy. This article presents a case study in successful intervention using the passage by the Congress of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act of 1990. The major influences in the passage of this landmark bill were building a diverse coalition that provided a very broad base of advocacy; securing bipartisan support; using recognizable personalities to call attention to the problem; and defining the issue as one that affected people from all socioeconomic and ethnic groups.

Delivery of oral health care through the Ryan White CARE Act to people infected with HIV.

The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act of 1990 was passed by Congress "to improve the quality and availability of care for individuals and families with HIV disease." The act targets those individuals infected with HIV who lack financial resources to pay for care. While provision of oral health care is not mandated by the legislation, many oral health services are supported through five different programs receiving CARE Act funding. Legislative mandates, program guidance materials, grant applications, and other related materials were reviewed to analyze oral health care services supported or proposed through the CARE Act. In fiscal year 1991, an estimated $5.8 million of the total CARE Act funds ($229.6 million) were used for oral health care, and there is evidence that oral health concerns will receive increasing attention by grantees in future years. Opportunities exist for local oral health professionals to become involved in CARE Act programs and in the priority development process. It is possible that CARE Act grantees will serve as catalysts for the development of partnerships between private practitioners and public sector programs--relationships that could lead to improved access and quality of care for people with HIV infection.