White 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

CARE Act backed by medical experts at House hearing

At a hearing by the House of Representatives Committee on Oversight and Reform last week, medical experts backed the Comprehensive Addiction Resources Emergency (CARE) Act (H.R. 2569). The legislation, introduced by Committee Chair Rep. Elijah E. Cummings (D‐Maryland) and Sen. Elizabeth Warren (D‐Massachusetts), is modeled on the bipartisan Ryan White Comprehensive AIDS Resources Emergency (CARE) Act passed three decades ago to combat the HIV/AIDS epidemic.

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.

Bridging The DivideLion Of The Senate: When Ted Kennedy Rallied The Democrats In A GOP Congress By Littlefield Nick Nexon David New York (NY) : Simon and Schuster , 2015 528 pp., $35.00

Bridging The DivideLion Of The Senate: When Ted Kennedy Rallied The Democrats In A GOP Congress By Littlefield Nick Nexon David New York (NY) : Simon and Schuster , 2015 528 pp., $35.00

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.

Time to Decriminalize HIV Status

Thirty-two U.S. states and two territories have statutes that criminalize sexual and other conduct of persons who are HIV-positive. Many of these laws were passed in response to the Ryan White Comprehensive AIDS Resources Emergency Act of 1990, which required states to outlaw intentional transmission of HIV as a condition of federal funding, but almost all of them reach far beyond intentional infection and affect conduct that has not resulted in infection and even conduct that could never result in infection. Hundreds of state courts have also used HIV-positive status as an element of traditional crimes such as assault with a deadly weapon, reckless endangerment, even attempted murder. A defendant's HIV-positive status has also been used as a factor justifying harsher sentences for crimes ranging from prostitution to rape to simple assault. What exactly is wrong with HIV criminalization? Why shouldn't we punish people who recklessly or deliberately expose others to HIV? Why not try to force HIV-positive individuals to disclose their status to potential sexual partners?

Current Challenges to the United States’ AIDS Drug Assistance Program and Possible Implications of the Affordable Care Act

AIDS Drug Assistance Programs, enacted through the Ryan White Comprehensive AIDS Resources Emergency Act of 1990, are the “payer of last resort” for prescription medications for lower income, uninsured, or underinsured people living with HIV/AIDS. ADAPs face declining funding from the federal government. State funding of ADAP is discretionary, but some states increased their contributions to meet the gap in funding. The demand for ADAP support is increasing as people living with HIV are living longer; the antiretroviral therapy (ART) guidelines have been changed to recommend initiation of treatment for all; the United States is increasing HIV testing goals; and the recession continues. In the setting of increased demand and limited funding, ADAPs are employing cost containment measures. Since 2010, emergency federal funds have bailed out ADAP, but these are not sustainable. In the coming years, providers and policy makers associated with HIV care will need to navigate the implementation of the Affordable Care Act (ACA). Lessons learned from the challenges associated with providing sustainable access to ART for vulnerable populations through ADAP should inform upcoming decisions about how to ensure delivery of ART during and after the implementation of the ACA.

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. …

Ensuring Access to Treatment for HIV Infection

The recent recommendations of the Centers for Disease Control and Prevention for opt-out testing are intended to address the evolving human immunodeficiency virus (HIV) epidemic in the United States by bringing more HIV-infected individuals into medical care. This is an important step to better control the epidemic but brings with it the challenges of adequately caring for more individuals infected with HIV and of funding medications and medical care for these additional patients. With more patients being offered HIV testing, there will be a surge in the need for testing and counseling services, which must keep pace with patient demand. This article describes the current status of HIV screening and care from 4 perspectives: the Ryan White Program (previously known as the Ryan White Comprehensive AIDS Resources Emergency Act), Medicaid and Medicare reimbursement for HIV screening, a managed care organization, and community health centers. The mandate for routine HIV screening challenges each of these health care entities, but all will need to overcome these challenges if routine HIV screening is to become a reality.

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.

Psychiatrist Finds Stigma Education Desperately Needed on Hill

Psychiatrist Finds Stigma Education Desperately Needed on Hill

Adaptations

Interview with Drs. Ruth Berggren and Tyler Curiel on rebuilding the health care system in New Orleans in the wake of Hurricane Katrina. (08:30)Download Two outpatient clinics serving the disenfranchised have adapted in creative ways to deliver community-based care to New Orleans. Charity Hospital's HIV Outpatient (HOP) Clinic, funded under the Ryan White Comprehensive AIDS Resources Emergency Act, responded to Hurricane Katrina by reconstituting itself with a much smaller staff. In the Algiers neighborhood, a new free clinic dubbed the Common Ground Health Clinic has drawn volunteer medical professionals from around the country. In the early days after Katrina, these clinics coalesced around the neediest populations. Today, they are moving from stopgap measures to sustainable models promoting continuity of care.(Figure)The reconstitution . . .

Estimation of Unmet Need for HIV Primary Medical Care: A Framework and Three Case Studies

Reauthorization of the Ryan White Comprehensive AIDS Resources Emergency Act requires that each jurisdiction estimate the number of people living with HIV/AIDS who have unmet need for care. Past assessments of unmet need have used various definitions of care, relied on qualitative evaluations, or examined nonrepresentative subpopulations. This article outlines a single, flexible framework designed to quantitatively estimate unmet need in varied settings. The framework adopts a definition of unmet need which focuses on HIV primary medical care (CD4 test, viral load test, or antiretroviral therapy in a 12–month period), employs a standard analytic structure to integrate population and care data, and allows use of locally available data. We report on three field tests (Louisiana, Atlanta, and San Francisco). The field tests suggest that the unmet need framework provides an approach which can be used by states and metropolitan areas to estimate the number of individuals with unmet need for HIV primary medical care.

Uses of HIV and Other Public Health Data for HIV Prevention and Care Planning

Reauthorization of the Ryan White Comprehensive AIDS Resources Emergency Act requires that each jurisdiction estimate the number of people living with HIV/AIDS who have unmet need for care. Past assessments of unmet need have used various definitions of care, relied on qualitative evaluations, or examined nonrepresentative subpopulations. This article outlines a single, flexible framework designed to quantitatively estimate unmet need in varied settings. The framework adopts a definition of unmet need which focuses on HIV primary medical care (CD4 test, viral load test, or antiretroviral therapy in a 12-month period), employs a standard analytic structure to integrate population and care data, and allows use of locally available data. We report on three field tests (Louisiana, Atlanta, and San Francisco). The field tests suggest that the unmet need framework provides an approach which can be used by states and metropolitan areas to estimate the number of individuals with unmet need for HIV primary medical care.

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.

Factors associated with use of dental services among HIV-infected and high-risk uninfected women

The authors explored the frequency of dental care utilization and identified the main barriers to access to dental care among U.S. women with HIV infection and uninfected women at high risk of becoming infected. The authors' prospective study included HIV-infected and uninfected women enrolled in the northern California and Chicago sites of the Women's Interagency HIV Study. A trained interviewer administered a standardized questionnaire to participants by phone. The authors explored subjects' utilization of dental care in relation to predisposing, enabling and need variables using both univariate and multivariate analyses. The 363 participants were predominantly black and unemployed and had a history of using injected drugs. Not using dental care was most prevalent among HIV-negative women, particularly in Chicago. Multivariate analyses revealed that the strongest predictors of nonuse of dental care included being of a race other than white, fear of dentists and perception of poor or fair oral health. Women not infected with HIV but at high risk of developing the infection appear to have even greater unmet dental needs than do HIV-positive women. Being of a race other than white and fear of dentists are strong predictors of not using dental care. The Ryan White Comprehensive AIDS Resources Emergency Act facilitates dental care access for people who are HIV-positive, and is the likely explanation for the higher prevalence of dental care use in this group compared with uninfected women at high risk of becoming infected. This underscores the need for Medicaid to include dental coverage for low-income populations in all states.

Delivering Care to Injection Drug Users Coinfected with HIV and Hepatitis C Virus

Injection drug use has fueled the epidemic of human immunodeficiency virus (HIV) and hepatitis C virus (HCV) coinfection in the United States. Nevertheless, drug dependence is among the main reasons that coinfected persons are not being treated for HCV infection. This report describes the development and progress of an HIV clinic program (funded by the Ryan White Comprehensive AIDS Resources Emergency Act) to deliver care for HCV infection to HIV-seropositive injection drug users. To optimize safety and adherence, pegylated interferon is directly administered to patients in the context of integrated addiction, psychiatric, and HIV and HCV therapy. Ribavirin is packed weekly in pill boxes for patients to take at home. Thus far, adherence to weekly visits for treatment with interferon has been 99%. No one has had to stop treatment for HCV infection because of ongoing drug use, addiction relapse or exacerbation, or psychiatric complications. Presented here is a work in progress, rather than a finished research project or definitive model of care.

Characteristics of Ryan White and non-Ryan White funded HIV medical care facilities across four metropolitan areas: results from the antiretroviral treatment and access studies site survey

The Ryan White Comprehensive AIDS Resources Emergency Act 1990 (CARE Act) is one of the largest federal programmes funding medical and support services for individuals with HIV disease. Data that report services and gaps in service coverage from the organizational perspective are very limited. The Antiretroviral Treatment and Access Studies included a mail survey of 176 HIV medical care facilities in four US inner cities on clinic characteristics, services and practices, and patient characteristics. Characteristics of 143 (85%) responding Ryan White (RW) funded and non-RW funded facilities are described. RW funded facilities reported offering more services than non-funded facilities including evening/weekend hours (49% vs. 18%), transportation (71% vs. 22%), and on-site risk reduction counselling (88% vs. 55%). More RW funded facilities reported offering on-site adherence support services, such as support groups (44% vs. 12%), formal classes (20% vs. 2%), and pillboxes (83% vs. 43%), and served a larger proportion of uninsured patients (41% vs. 4%) than non-funded facilities. Our analysis showed that the RW funded HIV care facilities offered more clinic, non-clinic, and adherence support services than non-RW funded facilities, indicating that the disparities in services were still related to CARE Act funding, controlling for private–public facility type.

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.

Choices and voices: participation of people with HIV on Ryan White Title II Consumer Advisory Boards.

This article presents an assessment of the functioning and training needs of consumer advisory boards in Massachusetts (CABs) who advise the Massachusetts agency and the consortia funded through Title II of the Ryan White Comprehensive AIDS Resources Emergency Act. The study found that the stage agency and the CABs valued the role of consumers in policy making, but the mechanisms for translating this goal into reality were not always clear or available. The CABs wanted more opportunities to interact with HIV/AIDS Bureau staff and with one another. The CAB members expressed need for ongoing training and technical assistance for themselves and for consortia staff. This project was an example of action research, for the purpose of change and mobilization.