HIV Screening and Access to Care Exploring the Impact of Policies on Access to and Provision of HIV Care (2011) / Chapter Skim
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HIV Screening and Access to Care: Exploring the Impact of Policies on Access to and Provision of HIV Care
HIV Screening and Access to Care: Exploring the Impact of Policies on Access to and Provision of HIV Care
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, convened a committee in 2009 to plan and conduct a series of three workshops and data gathering activities to evaluate barriers to expanded HIV testing and treatment programs. The committee's first report focused on the extent to which federal and state laws and policies, private health insurance policies, and other factors inhibit or promote expanded HIV testing (IOM, 2010)
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Issues for the committee to consider include a. What are the current federal and state laws, private health coverage poli� poli� cies, or other policies that impede HIV testing?
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The 15-member Committee on HIV Screening and Access to Care is composed of experts in the areas of HIV testing and care policy, HIV/AIDS ethics, epidemiology and biostatistics, HIV/AIDS clinical care, HIV/AIDS care services research, HIV care financing, state HIV/AIDS service programming and implementation, and the behavioral sciences (see Appendix A)
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There is a lack of reliable, recent estimates of how many individuals who have been diagnosed with HIV/AIDS are receiving care (e.g., have a medical provider, are on antiretroviral therapy, or are receiving psychosocial and support services)
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If the goals of expanded HIV testing are to be met, it is important to ensure the availability of, and access to, care and treatment, as well as the continuity of care for those already linked in. The focus of this report is policy-related barriers to entry into and sustained clinical care for individuals with HIV.
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Most of the barriers to care identified in the 2005 IOM report are still present today. POLICIES THAT PROMOTE OR INHIBIT CLINICAL CARE SERVICES AMONG AGENCIES AT THE FEDERAL LEVEL, STATE LEVEL, OR BETWEEN FEDERAL AND STATE AGENCIES Jennifer Kates, Kaiser Family Foundation, noted that the health care financing and delivery system in the United States has gaps in access to care that vary by state.
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Health Insurance Policies Having health coverage is critical to gaining access to HIV/AIDSrelated care due to the high expense involved in medical management of the disease. Care for people with HIV may be covered through federal programs such as Medicaid, Medicare, the Ryan White program, and the Department of Veterans Affairs (VA)
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(In billions) SAMHSA $0.1 1% FEHB $0.1 Other $0.1 1% Veterans Affairs 1% $0.8 6% Medicaid (federal Ryan White $2.3 only)
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TABLE 3 Potential Eligibility Criteria for People with HIV/AIDS, by Major Payor/Source Private Medicaid Medicare Employer Individual Ryan White Must be both low income and Low income categorically Seniors or under Individual and uninsured Who eligible 65 disabled Job-based market-based or underinsured Income/asset test Yes No N/A -- but costs N/A -- but costs Yes involved involved U.S. citizen Yes Yes Not necessarily Not necessarily No Preexisting condition No No Some limits Yes, in most states No limit State variation Yes No Yes Yes Yes Capped funding No No Yes Yes Yes HIV-specific program No No No No Yes SOURCE: KFF, 2010e.
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To be eligible for Medicaid, an individual must be both low income and "categorically" eligible. There are several pathways to Medicaid coverage (Table 4)
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Other barriers to access to Medicaid coverage include the onerous application process in some states; a restrictive definition of disability that excludes persons with HIV who do not have an AIDS diagnosis and who are capable of engaging in "substantial gainful activity" (although this will be alleviated with changes to categorical eligibility criteria that will no longer require an AIDS diagnosis/disability under the ACA) ; and limited beneficiary autonomy in choosing a care provider (Rawlings and Hopson, 2009)
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. States must cover all medically indicated/physician ordered HIV tests, but states have the option to cover routine HIV screening.
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Persons who request an HIV test despite reporting no individual risk factors could also be tested under the policy, since this group is likely to include individuals not willing to disclose high-risk behaviors.8 The Ryan White Program The Ryan White program is the only federal grant program designed specifically for people with HIV/AIDS. The pro 8 See CMS decision memo CAG-00409N.
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. A constant amidst the variation is that Ryan White programs are limited to HIV-related outpatient services.
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Testing must be considered "integral to the treatment of HIV infection and related complications."10 9 Ryan White grantees receiving funds under Parts A, B, and C must spend at least 75 per cent of funds on "core medical services," such as outpatient and ambulatory health services, pharmaceutical assistance, substance abuse outpatient services, oral health, and other services. Remaining funds may be spent on support services such as outreach, medical transportation, language services, respite care for persons caring for people with HIV/AIDS, and referrals for health care and other support services (HRSA, 2010a)
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including HIV are eligible for compensation benefits through the Veterans Benefits Administration and are entitled to VHA care and other benefits such as preference in federal/state employment and job retention rights. As of August 2009, the VHA's policy on HIV testing includes HIV testing as part of routine medical care.
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Monthly premiums within such pools can be prohibitively expensive, and although Ryan White funds may be used to pay for premiums, this arrangement can be difficult to make. Private Health Insurance Fewer than one in five individuals with HIV (17 percent)
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. Insurance Policies and Access to Expert HIV Care Providers Evidence indicates that care provided to HIV-infected individuals by medical providers who specialize or have significant experience in HIV care is better than care provided by non-specialists or providers with limited exposure to HIV patients.
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Health Care Reform and Access to Health Insurance for Persons with HIV/AIDS Kates discussed how the ACA will expand access to care for millions of Americans who are currently uninsured, including people with HIV/AIDS. According to a recent Kaiser Family Foundation study, Medicaid expansion will significantly increase the number of people covered by the program and markedly reduce the number of uninsured individuals in states across the country, with the federal government picking up the majority of cost (KFF, 2010b)
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Uncertain also is the role of the Ryan White program following implementation of health care reform. Under the ACA, there are opportunities to expand access to providers experienced in the care of individuals with HIV.
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leaves out those HIV physicians who are infectious disease specialists but also provide primary care to their patients.18 Housing Policies David Holtgrave, Johns Hopkins Bloomberg School of Public Health, described a large body of evidence on the relationship between homelessness and HIV infection. Studies conducted among persons who were homeless or unstably housed in New York City, Philadelphia, and San Francisco, for instance, have shown HIV seroprevalence rates several times higher than that seen in the general population (Culhane et al., 2001; Kerker et al., 2005; Robertson et al., 2004)
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He testified that the evidence indicates that there are many negative consequences of homelessness, including high medical care costs. People who are homeless have many barriers to health care generally, but use acute care services (e.g., emergency rooms)
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. A second randomized trial, the Housing and Health Study, was designed to study the causal effects of providing rental housing to homeless or unstably housed individuals with HIV on physical health, access to medical care, treatment adherence, HIV risk behaviors, and mental health status, using data gathered at baseline and 6, 12, and 18 months (Kidder et al., 2007)
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Act. The act includes a number of measures to improve efforts to reduce homelessness and housing insecurity that are likely to benefit persons with HIV, including a change in HUD's definition of homelessness and chronic homelessness and the establishment of a Rural Housing Stability Program.20 Policies Affecting Immigrants Undocumented immigrants tend to have poor access to health care, and there are very low rates of testing for HIV/AIDS among immigrants who have not yet acculturated to the United States.
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In addition to barriers imposed by federal policies, some states have imposed restrictions on access to services for immigrants. Sol stated that although immigrants with HIV, including those who are undocumented, may be eligible for the Ryan White program, the process for determining eligibility for Ryan White services can be difficult.
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From a human rights and a public health perspective, such exclusionary policies are ill advised. With many immigrants being excluded from coverage under the ACA, the preservation of the Ryan White program is essential because it provides a safety net for individuals with HIV/AIDS regardless of their immigration status.
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Figure 2 shows the cycle of incarceration and release (and sometimes reincarceration) in relation to jail health care, prison health care, and community health care.
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To overcome barriers in the correctional system, the state has put in place a system to identify HIV-positive individuals at entry, facilitate entry into care during incarceration, and promote follow up for HIV care post release. To accomplish these goals, the state correctional system has instituted a medical/social intake process that includes routine HIV testing and has employed 11 nurse case managers to engage inmates in care.
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There is considerable variability in continuity of antiretroviral therapy and HIV care following release from prison or jail (i.e., care within 30 days of release) according to the research literature.
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There are large gaps in coverage for mental health and substance abuse treatment for persons with HIV/AIDS. Both private and public mental health coverage are generally inadequate.
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There can be confusion about whether mental health and substance abuse services, or assessment and early intervention services, are considered medical services under some programs. Tomaszewski stated that some service providers, for example, do not understand what a "core" medical service is under the Ryan White program.
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In terms of federal support for network development, Landers described how the Ryan White program has adopted a model that supports care through networks, for example through Part A EMAs and their planning councils. A study of 42 Part A EMAs found perceived quality and availability of services to be high for primary care and case management, but lower for other services (i.e., mental health, substance abuse, transportation, housing, dental, translation/interpretation)
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In many ways, health care for HIV/AIDS, with its focus on the provision of associated psychosocial services, may be an appropriate model of care not only for individuals who are poor and disadvantaged, but also for those who are otherwise marginalized or stigmatized and have other health disparities. It could be argued that the care models that have evolved, largely as a result of Ryan White funding, should be maintained for HIV-infected individuals and expanded so that they are available for patients with other complex chronic conditions.
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By federal law, 75 percent of parts A, B, and C of Ryan White funding must be used for core medical care services, including outpatient and ambulatory health services; pharmaceutical assistance; substance abuse outpatient services; oral health; medical nutritional therapy; health insurance premium assistance; home health care; hospice services; mental health services; early intervention services; and medical case management, including treatment adherence services (HRSA, 2010a)
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24 Issues surrounding the capacity of the HIV/AIDS workforce to expand HIV/AIDS care services are addressed in detail in the forthcoming third report of the Committee on HIV Screening and Access to Care.
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. Community Health Centers CHCs have experienced flat Ryan White payments at the same time as they have experienced increased patient volume following expansions of HIV screening programs.
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Investments in electronic medical record systems would help to facilitate the reporting of processes of care and outcomes to funding programs. Training Workshop participants discussed the need for clinician education on the role of state health departments in identifying individuals with HIV/ AIDS and linking them to care to help bridge communication gaps that may exist between clinical and public health providers.
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With the influx of more individuals into the care system, concerns regarding the implementation of health care reform include the potential for reductions in safety net services, such as those offered through the Ryan White program. Landers pointed out that in Massachusetts, with the perception of "full coverage" under its version of health care reform, lawmakers reduced funding for services directed to STIs, tuberculosis, family planning, sexual assault, and health promotion.
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. Federal and State Agency Policies in Funding HIV Medication Adherence Programs Deborah Parham Hopson, Health Resources and Services Administration, described federal funding for HIV medication adherence programs through the Ryan White program.
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Treatment adherence services vary widely across state and Ryan White programs. From a system perspective, Duffus mentioned
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She mentioned the dilemma of out-of-care patients refusing interventions and the difficulties in defining the ongoing responsibility of the health department in such situations. Andrea Weddle outlined a series of prescription drug policies that represent challenges to adherence, including the existence in some state Medicaid programs of monthly drug limits, preferred drug lists or formularies, and requirements for prior authorization (Table 7)
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. International studies that have looked specifically at patient payment for prescription drugs for HIV have found an adverse impact on follow up and adherence (e.g., Zachariah et al., 2008)
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These studies were included in the meta-analyses/systematic reviews previously mentioned. Directly administered antiretroviral therapy (DAART)
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44 HIV SCREENING AND ACCESS TO CARE TABLE 8 Findings from Selected RCTs Examining the Effectiveness of Interventions to Improve ART Adherence Author Subjects Intervention Findings Weber et al., 2004 60 HIV-positive Cognitive behavior No improvement individuals intervention on in adherence, but adherence to ARV effective in preventing a decline in adherence Remien et al., 2005 215 Serodiscordant Four structured Focus on partners MEMS couples discussion/ improved HIV (eligible if <80 education sessions medication adherence percent adherent) about adherence, in terms of medication problem solving to behaviors and viral overcome barriers load over a 6-month to adherence, period and couple communication exercises to optimize partner support Reynolds et al., 109 HIV-positive Weekly telephone Improved adherence 2008 (ACTG 731 individuals calls by nurses and worked study)
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In terms of federal monitoring of Ryan White grantees, Parham Hopson described how some of HRSA's performance measures are related to medication adherence. For example, one of the core clinical performance mea
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. Through its National Quality Center, HRSA offers a number of online resources and tools for Ryan White Care Act grantees to improve patient adherence to HIV treatment medication.26 Lessons from Successes in Other Chronic Conditions The committee was asked to consider how successes in promoting adherence to therapy for other chronic conditions may inform approaches to improve adherence with ART and, hence, to improve medical outcomes for people with HIV.
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Taking these factors into account can help improve adherence to ART regimens. PAYMENT FOR TREATMENT OF EARLIER STAGE HIV INFECTION As part of its charge, the committee was asked whether insurance companies and other payors will pay for treatment of HIV-infected persons whose CD4 counts and/or viral load does not fall within the "official guidelines" for starting treatment.
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. World Health Organization, Antiretroviral Therapy for HIV Infection in Adults and Adolescents, 2010 It is recommended to treat all patients with CD4 counts of ≤350.
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. Private Health Insurance The committee did not survey the various health insurers on their provision of coverage for treatment of individuals with HIV disease less advanced than current guidelines indicate for starting treatment.
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However, health care reform measures already are being taken to prohibit exclusions by health insurance plans based on preexisting conditions. Reforms also will increase the scope of coverage through a new mandatory benefits package that includes prescription drugs, mental health and sub 30 Personal communication between Michael Horberg and Andrew Baskin of Aetna and Bob Rehm of AHIP, June 2010.
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. Health care reform under the ACA expands Medicaid income eligibility requirements to include many more individuals who did not qualify previously by raising the floor of eligibility to 133 percent of the FPL.
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SOURCE: NASTAD/KFF, 2010. Figure 4 The Ryan White Program The data concerning ADAP coverage of people with early stage HIV infection are incomplete.
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About 85 percent of HIV infections in SF are among men who have sex with men (MSM) and MSM who inject drugs (SFDPH, 2010)
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.35 Colfax estimated that additional funding will be needed to support availability of ART for HIV-infected individuals in SF with full implementation of the "test-and-treat" program. The city is currently facing a fiscal deficit and the public health clinic is laying off staff, so implementation may be difficult until the economy recovers.
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At the same time, unlike Medicaid, the Ryan White program is a discretionary grant program that depends on annual appropriations from Congress, and its funding does not necessarily match the need for or the costs of care, creating gaps in access in several states and cities. The Affordable Care Act will address several shortcomings in the current financing and delivery systems, with millions of low-income individuals, including people with HIV/AIDS, gaining access to Medicaid and benefiting from the removal of current barriers to accessing private insurance, but there are concerns that not all of the benefits that are currently available through the Ryan White program (e.g., medications, adherence support, case management)
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Access to Medications Restrictive eligibility criteria and cost-sharing requirements for health coverage limit access to medications for many individuals with HIV/AIDS. Federal support for antiretroviral and other essential medications through the Ryan White ADAP program is essential to HIV/AIDS patients, but several states are experiencing waiting lists, and others are exercising other cost containment strategies.
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To help ensure that all HIV-positive individuals have access to needed medications, consideration might be given to · roviding sufficient Ryan White funding to eliminate ADAP wait p ing lists and other cost containment and triage strategies; · xtending ADAP coverage to all antiretroviral and other classes of e drugs, for example, for mental health, cardiovascular, and gastro intestinal conditions; · roviding programs in all states to serve individuals who are medi p cally needy but have incomes too high to be eligible for Medicaid; and · eliminating prescription drug limits in all states. Unstable Housing and Associated Polices Homelessness is a risk factor for HIV infection and poorer outcomes among HIV-infected individuals.
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Possible means to reduce/remove the barriers to care faced by immigrants, and especially undocumented immigrants, include · roviding access to linguistically and culturally appropriate care; p and · reservation of the Ryan White program to provide coverage to p individuals regardless of their immigration status. Policies Affecting Individuals Within the Correctional System Individuals who are incarcerated in jails and prisons are eligible for health care, but too often HIV/AIDS care is absent, incomplete, or not coordinated with care that the inmate received prior to admission to the correctional system or that is available upon release.
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Federal and state agencies might facilitate integration of HIV care with closely related infectious conditions including STIs, viral hepatitis, and tuberculosis; integration with case management, mental health and substance abuse treatment, transportation, translation services, and dental care; integration with "upstream" services that impact social determinants of health, such as housing, education, job training, legal services, and refugee and immigrant services; and integration into mainstream health care, in particular, the chronic care model. Filling Gaps Created by Categorical Funding After the ACA is implemented and more clients are covered by Medicaid, a portion of the Ryan White funds currently dedicated to core medical services may be available for support services (e.g., outreach, medical transportation, referrals for health care and other support, language services, respite care for individuals caring for persons with HIV)
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. HIV Medication Adherence Programs Policies in Funding HIV Medication Adherence Programs The federal Ryan White program, in addition to paying for antiretroviral therapy through the ADAP program, supports adherence interventions.
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Means to improve patient adherence include · nsuring that the federal rules and funding for Ryan White pro e grams maximize the ability of states to use the funds to support adherence interventions; · tructuring state ADAP programs to maximize the provision s adherence services through co-location of HIV/AIDS clinics and pharmacies, client-centered pharmacies (e.g., mail order filling of prescriptions) , and electronic record systems to track patient adher ence and alert providers of episodes of noncompliance; · inimizing structures that contribute to adherence problems, such m as delays in communication between health departments and phar macies (necessitating that a client potentially make multiple trips to a pharmacy to get a prescription filled)
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The second step is linking newly diagnosed individuals to care and then retaining them in care once linked. The means by which newly diagnosed individuals are linked to care varies depending on the venue where the testing takes place.
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63 EXPLORING THE IMPACT OF POLICIES ON HIV CARE · edicaid and Medicare providing coverage for all persons with M HIV who meet the income threshold, without requiring them to qualify on the basis of disability, as intended under the ACA; · unding of ADAP and other programs at levels sufficient to elimi f nate the need for programs or providers to prioritize provision of treatment based on, for example, CD4 counts; · the organizations that issue clinical guidelines making their pur poses clear and their methodology transparent, so that policy mak ers can better understand the source of any discrepancies; and · he federal agencies and professional societies that issue guidelines t keeping them updated to reflect the latest scientific evidence, as HHS does on a regular basis. Taken collectively, improvements in these areas will help to promote both early treatment, with minimal interruption, and the provision of psychosocial and support services for HIV-infected individuals, leading to better health outcomes.
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