HIV Screening and Access to Care: Exploring the Impact of Policies on Access to and Provision of HIV Care

The Institute of Medicine (IOM), in response to a request from the White House Office of National AIDS Policy (ONAP), 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). This second report prepared by the committee examines how federal and state laws and policies and private health insurance policies and practices affect entry into clinical care and the provision of continuous and sustained care for people with HIV. The committee’s forthcoming third report will examine the current capacity of the health care system to administer a greater number of HIV tests and to accommodate new HIV diagnoses (see Box 1).

As part of its charge for this report, the Committee was asked to consider the following specific questions:

•   How can federal and state agencies provide more integrated HIV care services?

•   What policies promote/inhibit clinical care services among agencies at the federal level, at the state level, or between state and federal agencies?

•   What are federal and state agency policies in funding HIV medication adherence programs? What HIV medication adherence programs work?



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HIV Screening and Access to Care: Exploring the Impact of Policies on Access to and Provision of HIV Care The Institute of Medicine (IOM), in response to a request from the White House Office of National AIDS Policy (ONAP), convened a com- mittee in 2009 to plan and conduct a series of three workshops and data gathering activities to evaluate barriers to expanded HIV testing and treat- ment 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). This second report prepared by the committee examines how federal and state laws and policies and private health insurance policies and practices affect entry into clinical care and the provision of continuous and sustained care for people with HIV. The committee’s forthcoming third report will exam- ine the current capacity of the health care system to administer a greater number of HIV tests and to accommodate new HIV diagnoses (see Box 1). As part of its charge for this report, the Committee was asked to con- sider the following specific questions: · ow can federal and state agencies provide more integrated HIV H care services? · hat policies promote/inhibit clinical care services among agencies W at the federal level, at the state level, or between state and federal agencies? · hat are federal and state agency policies in funding HIV medica- W tion adherence programs? What HIV medication adherence pro- grams work? 1

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2 HIV SCREENING AND ACCESS TO CARE BOX 1 Statement of Task 1. What is the extent to which federal, state, and private health insurance poli� cies pose a barrier to expanded HIV testing? 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? b. What effective HIV testing methods and/or policies should be implemented by federal, state, or local agencies, federal programs, or private insurance companies that can be used to reach populations with a high HIV preva� lence and/or high prevalence of undiagnosed HIV infection? c. What has been the impact of opt�out HIV testing? 2. What federal and state policies and private insurance policies/practices (such as pharmaceutical coverage limits) inhibit entry into clinical care for individuals who test HIV-positive or inhibit the provision of continuous and sustained clinical care for HIV-positive persons? Issues for the committee to consider include a. How can federal and state agencies provide more integrated HIV care services? b. What policies promote/inhibit clinical care services among agencies at the federal level, at the state level, or between state and federal agencies? c. What are federal and state agency policies in funding HIV medication adherence programs? What HIV medication adherence programs work? d. Will insurance companies and other payors pay for the treatment of an HIV� infected person who tests positive in this theoretical new, expanded testing program, but whose CD4+ T cell count and/or viral load does not fall within the “official guidelines” of starting antiretroviral therapies? e. What can be done to promote access to HIV treatment for HIV�positive individuals with CD4+T cell counts greater than “official guidelines”? 3. What is the current capacity of the health care system to administer a greater number of HIV tests and to accommodate new HIV diagnoses? Issues for the committee to consider include system, workforce, and private sector issues: a. Where do HIV�positive patients currently get care? b. What is the HIV�related training or experience of most HIV care providers (medical doctor, nurse practitioner, physician’s assistant, registered nurse)? c. What manpower or training/experience improvements are needed to absorb more newly diagnosed HIV�positives from expanded HIV testing services? d. Is the age profile of providers compatible with sustainability of the HIV care delivery system? That is, are younger clinicians and/or students receiving adequate training/experience to meet future needs? e. What are the impediments to professionals entering into, or continuing to provide, AIDS care? f. What policies inhibit or enhance the movement of health care professionals into HIV/AIDS specialties? g. Are there adequate financial or professional incentives to promote HIV/ AIDS as a specialty among the health care professions?

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3 EXPLORING THE IMPACT OF POLICIES ON HIV CARE · ill insurance companies and other payors pay for the treatment W of an HIV-infected person who tests positive for HIV, but whose CD4+ T cell count and/or viral load does not fall within the “offi- cial guidelines” of starting antiretroviral therapies? · hat can be done to promote access to HIV treatment for HIV- W positive individuals with CD4+T cell counts greater than “official guidelines”? 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 program- ming and implementation, and the behavioral sciences (see Appendix A). The committee held its second public workshop, to explore the second part of its study charge, June 21–22, 2010, in Washington, DC. Invited experts discussed barriers and facilitators to HIV/AIDS care during the following five workshop sessions: (1) overview of clinical care and social service needs of persons with HIV/AIDS; (2) entry into and sustained HIV/AIDS care: the role of federal and state and private health insurance policies; (3) payment for treatment of earlier stage HIV infection; (4) the role of federal and state agencies in supporting integrated HIV care services; and (5) the impact of housing, mental health, and immigration policies on HIV/AIDS care access and retention (see agenda and biographical sketches of invited experts in Appendixes B and C, respectively). REPORT ORGANIZATION This report is structured in response to the committee’s charge and includes a review of the evidence, where available, from policy documents and the research literature on federal, state, and private health insurance policies as potential barriers or facilitators to improved access to HIV/ AIDS care. The committee addresses the question of how federal and state agencies can provide more integrated HIV care services (question 2a) fol- lowing what it felt was the broader question about policies that promote or inhibit clinical care services among agencies at the federal level, state level, or between state and federal agencies (question 2b). The committee has attempted to provide evidence supporting the assertions made by workshop speakers, but in some instances there is no research addressing these issues. Testimony provided by workshop speak- ers should be interpreted as opinion by knowledgeable individuals, unless supported by relevant studies.

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4 HIV SCREENING AND ACCESS TO CARE BACKGROUND HIV infection has been transformed from an unvaryingly fatal disease into a chronic disease. In high-income countries, survival for persons with HIV has improved in part due to improvements in therapy. For instance, the average survival time after HIV diagnosis based on surveillance data from 25 U.S. states increased from 10.5 years to 22.5 years from 1996 to 2005 (Harrison et al., 2010).1 Among HIV-positive persons on antiretroviral therapy (ART) in high-income countries, there have been notable declines in mortality rates and potential years of life lost between 1996–1999 and 2003–2005 (see Table 1) (Antiretroviral Therapy Cohort Collaboration, 2008). In many settings, the success of antiretroviral therapy in significantly decreasing morbidity and mortality has been possible because of the pro- vision of a comprehensive set of services to meet the particular needs of persons with HIV disease. The care of HIV-infected patients is complex, and subgroups of this population disproportionately face tremendous psy- chosocial problems, substance abuse, comorbid medical conditions, and poverty. Merrill Singer, University of Connecticut, defined a construct that he referred to as syndemics or “the concentration and deleterious interac- tion of two or more diseases or other health conditions in a population especially as a consequence of social conditions that promote disease clus- tering.” Singer emphasized the need to consider HIV/AIDS in the context of other diseases, mental health issues, social structures and environments, housing, and immigration status, especially for the disadvantaged and marginalized populations disproportionately affected by HIV/AIDS. A com- prehensive, multidisciplinary approach to HIV/AIDS services is needed due to the complexity of issues implicated in the health of individuals with HIV/AIDS. Despite the improvements in health for people with HIV who are in care and on treatment, many people with HIV in the United States enter medical care with advanced disease, have inconsistent adherence, or discontinue therapy prematurely (Losina et al., 2010). Singer noted the importance of using a syndemics approach to find hidden populations of people with health and social burdens implicated in increased vulnerabil- ity for HIV, to help facilitate linkage to and retention in care, and to help reduce health disparities. 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 psychoso- cial and support services). One recent study that involved meta-analyses 1 Despite improvement in survival overall, disparities in survival time after HIV diagnosis persist. Estimated survival time after diagnosis for black males, for example, is about 20 years, compared with 26 years for white males (Harrison et al., 2010).

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5 EXPLORING THE IMPACT OF POLICIES ON HIV CARE TABLE 1 Health Indicators for Overall (20 years or older) Population by Period of Follow Up Period of therapy initiation 1996–1999 2000–2002 2003–2005 Mortality rates (per 1,000 person-years) Overall 16.3 (14.9-17.8) 12.4 (11.5-13.2) 10 (9.3-10.8) Between the ages of 13.1 (11.7-14.7) 10.3 (9.4-11.2) 7.5 (6.8-8.3) 20 and 44 years Potential years of life lost before age 65 (per 1,000 person years) 20-64 years 365.9 260.4 189.4 Life expectancy (years; adjusted) At exact age 20 years 36.1 (SE 0.60) 41.2 (SE 0.52) 49.4 (SE 0.54) At exact age 35 years 25 (SE 0.42) 30.1 (SE 0.31) 37.3 (SE 0.37) Percent surviving 75.5% 79.5% 85.7% from 20 to 44 years SOURCE: Adapted from Antiretroviral Therapy Cohort Collaboration, 2008. of 28 studies involving 53,323 individuals looked at entry into care and retention in care (having multiple HIV medical visits) among individuals in the United States who were diagnosed with HIV. According to the study, 69 percent of those diagnosed with HIV entered HIV medical care averaged across the time intervals in the studies. Seventy-two percent had entered care within 4 months of diagnosis. With regard to retention in care, 59 per- cent had multiple HIV medical care visits during intervals from 6 months to 5 years (Marks et al., 2010). Another study found that, in 2003, only 55 percent of HIV-infected persons age 15 to 49 in the United States who were eligible to receive ART were in fact receiving ART (Teshale et al., 2005). In addition to assessing how many infected individuals do not enter care, there is a need to consider the various points along the care con- tinuum where individuals may fall out of care and the potential barriers and facilitators to care linkage and retention. 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 sus- tained clinical care for individuals with HIV. A 2005 IOM report identified

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6 HIV SCREENING AND ACCESS TO CARE BOX 2 Barriers to HIV Care in 2005 Identified by the IOM’s Committee on the Public Financing and Delivery of HIV Care Current public financing strategies for HIV care have provided care to and ex� tended the lives of many low�income individuals. However, significant disparities remain in assuring access to the standard of care for HIV across geographic and demographic populations. The current federal–state partnership for financing HIV care is unresponsive to the fact that HIV/AIDS is a national epidemic with consequences that spill across state borders. State Medicaid programs that provide a significant proportion of cover� age for HIV care are dependent upon widely varying resources and priorities that produce an uneven and therefore ineffective approach to managing the epidemic. Under the current patchwork of public programs that finance HIV care, many HIV�infected individuals have no access or limited access to the standard of care for HIV. Fragmentation of coverage, multiple funding sources with different eligibility requirements that cause many people to shift in and out of eligibility, and significant variations in the type of HIV services offered in each state prevent comprehensive and sustained access to quality HIV care. Low provider reimbursement in Medicaid and managed care delivery systems has the potential to discourage experienced physicians from treating patients with HIV infection and to undermine the quality of HIV care. SOURCE: IOM, 2005. many policy-related barriers to access to the standard of care for HIV in the United States (IOM, 2005) (Box 2). The IOM committee faulted the public response to HIV and described a patchwork of public programs offering fragmented care and health care providers inadequately reimbursed for their services. 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. Problems in accessing care can be acute for the general population, but they are particularly onerous for individuals with HIV/ AIDS who, as a group, are more likely to be poor and disadvantaged. On

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7 EXPLORING THE IMPACT OF POLICIES ON HIV CARE March 23, 2010, President Obama signed into law the Patient Protection and Affordable Care Act (ACA) that extensively changes the way in which health care is financed and provided in the United States (P.L. 111-148). This section of the report provides an overview of federal and state pro- grams and policies that affect access to HIV/AIDS care and how these programs may be affected by the recent health care reform. Health Insurance Policies Having health coverage is critical to gaining access to HIV/AIDS- related 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); community health centers (CHCs); private health insurance; or a combination of programs. There are no recent national estimates of health coverage of individu- als with HIV. The HIV Cost and Service Utilization Study (HCSUS), for example, the only nationally representative study of people with HIV/AIDS in care, was conducted from 1994 to 2000.2 A recent analysis of data from a convenience sample involving 12 medical sites located in urban cities throughout the United States showed that the majority of patients were covered under Medicaid (42 percent, including those dually eligible for Medicare) and the Ryan White program (24 percent) (Table 2).3 These data likely do not represent the national picture of health coverage of individuals with HIV, however, such as those in non-urban areas. Medicare, Medicaid, and the Ryan White program provide the majority of the public funding for HIV/AIDS care (Figure 1). Of the $13.2 billion in total federal expenditures for HIV/AIDS care in FY 2010, 75 percent represents mandatory spending on entitlement programs (i.e., Medicare, Medicaid, and the Federal Employee Health Benefits program) and 25 percent represents discretionary spending (e.g., Ryan White, VA, and the Substance Abuse and Mental Health Services Administration [SAMHSA]), which is dependent on annual congressional appropriations (KFF, 2010f). There are many potential health coverage pathways and associated eligibility criteria for people with HIV/AIDS. Coverage varies by payor as well as several other factors including age, employment status, citizenship, and health status/disability (Table 3). 2 HCSUS estimated that of the estimated 231,400 HIV-infected adults living in the contigu- ous United States at the time, 32 percent had private health insurance, 29 percent had Medic- aid alone, and 20 percent had no insurance. Nineteen percent of patients had Medicare with or without other health insurance (Bozzette et al., 1998) 3 Data are from medical sites located in Baltimore, Maryland; Tampa, Florida; Dallas, Texas; New York City, New York (3 sites); Rochester, New York; Philadelphia, Pennsylvania; Detroit, Michigan; San Diego, California; Oakland, California; and Portland, Oregon.

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8 HIV SCREENING AND ACCESS TO CARE TABLE 2 Estimates of Insurance Coverage Among Patients with HIV Attending Medical Offices Participating in HIVRN, 2010 Insurance Number of Patients (%) Private 2,585 (13) Medicaid 7,009 (36) Medicare 2,348 (12) Medicaid & Medicare 1,091 (6) Ryan White/Uninsured 4,580 (24) Missing 1,622 (8) Total Number of Patients 19,235 SOURCE: Analysis of data from K. Gebo and J. Fleishman, November 2010. (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) $4.7 17% 36% Medicare $5.1 38% $13.2 billion FIGURE 1 Federal funding for HIV/AIDS care by program, FY 2010 (in billions). SOURCE: KFF, 2010f.

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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. 9

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10 HIV SCREENING AND ACCESS TO CARE Federal and State Health Insurance Programs4 Medicaid Medicaid is the nation’s principal safety-net health insurance program and represents the largest expenditure on health coverage for peo- ple with HIV/AIDS when federal and state expenditures are combined. The program is a federal-state partnership, with each state and territory operat- ing its own Medicaid program under broad, federal guidelines. Medicaid is a guaranteed entitlement to U.S. residents and documented immigrants, and federal funding is provided to match state funds for those eligible for cover- age. In 2009, 47.8 million people were covered by Medicaid (DeNavas-Walt et al., 2010). An estimated 200,000–240,000 individuals with HIV/AIDS receive care through the Medicaid program (KFF, 2009a). Federal spending on Medicaid in FY 2010 is estimated at $275.4 billion,5 with an estimated $4.7 billion going to HIV care (KFF, 2009b), and additional state spending on HIV care is estimated at close to $4 billion (CMS, personal communica- tion, September 2010). Minimum eligibility requirements for Medicaid are set by federal law. To be eligible for Medicaid, an individual must be both low income and “categorically” eligible. There are several pathways to Medicaid coverage (Table 4). The large majority of persons with HIV on Medicaid qualify on the basis of being both low income and disabled, as determined by their eligibility for Supplemental Security Income (SSI) benefits. Because states have discretion in designing and administering Medicaid programs, there is considerable variation by state in eligibility, benefits, and other aspects of program. In addition to the mandatory groups that all states must cover to receive federal matching funds, there are optional eligibility groups that states can choose to cover and receive federal matching funds. For instance states have the option to offer eligibility for individuals with income above the threshold for the state (Table 4) (KFF, 2009a). Income eligibility requirements for Medicaid vary greatly by state, and are often very restrictive. For instance, in 34 states, low-income parents must have incomes less than the federal poverty level (FPL) to be Medicaid eligible; in 17 states, incomes must be less than 50 percent of the FPL (KFF, 2009c).6 Programs and benefits also vary. For example, only 33 states and the District of Columbia have a program for individuals who are medi- cally needy to serve people who have incomes that are too high to qualify for Medicaid but who are otherwise eligible (this is an optional program 4 This section is based primarily on the presentations of Jennifer Kates, Deborah Parham Hopson, Heather Hauck, and Andrea Weddle. 5See http://origin.www.gpo.gov/fdsys/pkg/BUDGET-2011-TAB/xls/BUDGET-2011-TAB-16-1. xls. 6 The FPL is an income threshold that is used as a measure to determine eligibility for as- sistance through several federal programs.

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11 EXPLORING THE IMPACT OF POLICIES ON HIV CARE TABLE 4 Medicaid Eligibility Pathways for People Living with HIV/ AIDS Category Criteria Mandatory/Optional SSI beneficiaries Severely disabled and low Mandatory (11 “209B” states income (standard 74% of can have more restrictive FPL, varies by state) eligibility) Parents, children, pregnant Low income; income Mandatory; states may offer women and asset criteria vary by higher income thresholds category and state Medically needy Severely disabled and low Optional (33 states and the income, after subtracting District of Columbia use incurred medical expenses; this option for people with income and asset criteria disabilities) vary by state but generally well below SSI levels Workers with disabilities Severely disabled; low Optional income; for persons returning to workforce Poverty-level expansion Allows for income above Optional SSI levels up to FPL State supplementary Allows for coverage of Optional payment those receiving SSP SOURCE: KFF, 2009a. under Medicaid) (KFF, 2009b), and 19 states have prescription drug limits (e.g., monthly or annual limits on the number of prescriptions) within their Medicaid programs (KFF, 2008). Heather Hauck, Maryland Department of Health and Mental Hygiene, discussed how some but not all states have Medicaid expansion programs allowing coverage for non-disabled individuals. In addition, there is limited coverage for nonmedical services, such as case management and housing, under Medicaid. Medicaid data system limitations may restrict the ability of administrators to assess who is in care and the appropriateness and out- comes associated with that care. 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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54 HIV SCREENING AND ACCESS TO CARE According to 2008 data from SF, an estimated 15 to 20 percent of HIV- infected individuals in SF do not know their infection status. Among those who have been identified as HIV positive, 88 percent are engaged in care and 72 percent have virologic suppression (Das et al., 2010). This later sta- tistic can be attributed to the availability of simpler and more potent medi- cations and more aggressive management on the part of providers. SF has adopted the “test-and-treat” model. Even before the new guidelines were implemented in 2009, close to half of persons living with HIV (non AIDS) with CD4 counts above 500 were on ART. Approximately 90 percent of persons living with AIDS and 70 percent of people living with non-AIDS HIV are on ART (Das et al., 2010).34 A “Fast Team” links individuals with care. Routine testing has been implemented in the emergency department of SF General Hospital. A team member links those who are HIV positive to care. According to Colfax, their linkage rate is 96 percent. Targeted testing is also taking place in clin- ics serving MSM. Colfax described methods used to monitor the “test-and-treat” pro- gram. An electronic medical record captures medication prescribing, medi- cation switches, and laboratory response to treatment (CD4 and viral load). In addition, an annual patient satisfaction survey is conducted. Monitoring takes place to identify patients lost to follow up or who have dropped out of care. Some individuals are referred to the outreach team for support and engagement. There is active surveillance for resistance in collaboration with the University of California, SF virology lab. There are almost 4,500 individuals in SF who are enrolled in ADAP with an average annual expenditure of about $7,820 per client (Personal communication between Grant Colfax and California State Office of AIDS, June 14, 2010).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 implementa- tion may be difficult until the economy recovers. Colfax described the need for changing provider behavior in terms of adherence to the new guidelines, but acknowledged the difficulties in doing so. There has been general community support of the new guidelines; how- ever, there has been some misunderstanding regarding the primary intent of the program (i.e., treatment vs. prevention). Colfax indicated that a “test-and-treat” strategy alone will not eliminate the HIV/AIDS epidemic. He emphasized the importance of public health approaches that address the many important nonmedical determinants of health and prevention. 34 These statistics refer to individuals who have been reported to the health department. 35 This estimate does not include the rebate (an average of 46 percent).

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55 EXPLORING THE IMPACT OF POLICIES ON HIV CARE Although the vast majority of SF’s HIV-infected population are MSM, the city’s program applies to all HIV-infected individuals and is a model that could be duplicated in other cities or regions with different demographics. CONCLUSIONS Advances in treatment have led to significant improvements in survival and quality of life for HIV-infected individuals who are identified early and linked to care. In part due to insurer and federal and state policies and practices, the benefits of early intervention and linkage to care, however, have not reached a sizable group of those who are HIV infected. Policies That Promote or Inhibit Clinical Care Services Among Agencies at the Federal Level, State Level, or Between Federal and State Agencies Status of Health Care Coverage Fragmentation of coverage and multiple funding sources with different eligibility requirements cause many people to shift in and out of eligibility for care. Furthermore, there are substantial regional variations in the avail- ability of coverage. Medicaid, in particular, is characterized by wide varia- tion by state, in terms of eligibility and benefit coverage. The Ryan White program has been a lifeline with regard to paying for medications and other services, filling in the gaps left by other funding sources. It also is credited with allowing providers to create “medical homes” for their HIV/AIDS patients. 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 indi- viduals, including people with HIV/AIDS, gaining access to Medicaid and benefiting from the removal of current barriers to accessing private insur- ance, 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) will continue to be supported. An integrated approach to HIV/AIDS care may depend on the continuation of the Ryan White program. Furthermore, services provided through the Ryan White program are, and will continue to be, essential for groups of individuals, such as undocumented immigrants, who will remain without access to Medicaid under the ACA. Several policies could be considered to reduce financial barriers to care, including

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56 HIV SCREENING AND ACCESS TO CARE · ringing eligibility criteria for public and private coverage into line b with HHS guidelines for initiating ART; · rovision of cost sharing assistance or subsidies for lower income p populations (as in Medicare Part D); · mposition of monthly and annual capitations on overall out-of- i pocket expenses; · isallowing the practice of denying coverage for failure to pay for d services; and · limination of annual or lifetime coverage limits (as proposed in e the ACA). Access to HIV/AIDS Expertise Current reimbursement policies, particularly under Medicaid, restrict access to providers with HIV/AIDS expertise. Even under the ACA, infec- tious disease physicians who provide primary care to HIV/AIDS patients may not be able to benefit from advantageous primary care provider reim- bursement policies under Medicaid. Federal and/or state policies or other programs could be enacted · o require health plans to include HIV/AIDS medical providers in t their provider networks; · o change reimbursement policies that restrict access to HIV t providers; · o ensure that infectious disease providers who provide primary t care to HIV/AIDS patients will be reimbursed in a manner compa- rable to other primary care providers; and · o offer appropriate training and incentives to encourage providers t to practice HIV medicine or to become competent to provide HIV care within their primary care practices. 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. Some state ADAP formularies do not cover all antiretroviral drugs and some are missing critical classes of drugs. States facing funding shortfalls must triage care, treating those with the lowest CD4 counts or those who are symptomatic. The lack of programs in several

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57 EXPLORING THE IMPACT OF POLICIES ON HIV CARE states to serve individuals who are disabled (but have incomes too high to be eligible for Medicaid), as well as the existence of prescription drug limits in some states, also pose barriers to receipt of care for individuals with HIV/ AIDS who are in need of treatment. 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. The provision of stable housing is associ- ated with a reduction of risk behaviors, increased health care and social service use, adherence to ART medications, and improvement in the sur- vival and health status of HIV-infected individuals. More longitudinal clini- cal trials are needed to determine whether, in which areas, and the extent to which housing status is causally related to a decrease in risk behaviors and improvements in health care and health outcomes for HIV-infected individuals. “Housing First” and “one-stop” service housing models have proven cost effective in linking vulnerable individuals into care and improv- ing health outcomes by addressing housing needs first while making service needs easily accessible. Currently, the demand for the Housing Opportunity for People with AIDS program administered by the Department of Housing and Urban Development is much greater than can be met. It is important to ensure adequate, stable housing for HIV-infected individuals through sufficient funding for HOPWA and other programs that support housing. Policies Affecting Immigrants Immigrants, and especially undocumented immigrants, face numer- ous barriers to HIV/AIDS care including a general lack of access to health insurance, the absence of linguistically and culturally appropriate care, stigma, unstable housing, and lack of family support. The ACA, although

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58 HIV SCREENING AND ACCESS TO CARE beneficial to many, does not include coverage of undocumented immigrants under Medicaid. The Ryan White program, as a federal program that does not make exclusions on the basis of immigration status, continues to be an essential source of care for immigrants with HIV/AIDS. Possible means to reduce/remove the barriers to care faced by immi- grants, 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. Sources of health care coverage are discontinued or suspended upon entry into jail or prison. Model federal and state programs have shown that individuals can be routinely tested for HIV at entry into the correctional system, cared for during incarceration, and linked to follow-up care following release. To succeed in providing comprehensive care, bureaucratic obstacles must be overcome and collaboration must be forged between the correctional and community-based care systems. Provision and continuity of care for incar- cerated individuals can be promoted through · mplementation and sufficient funding of programs that provide i routine HIV testing to individuals at entry into the correctional system, care for HIV-infected individuals during incarceration, and linkage to follow-up care after release; · emoval of bureaucratic obstacles to such programs; and r · ncreased collaboration between the correctional and community- i based care systems. Considerations of confidentiality and nondiscrimination are important to protect the well-being of individuals diagnosed or treated in correctional facilities. Establishment of an effective program for testing and treating the groups of individuals who pass through the correctional system is a monu- mental task but would help to extend interventions to otherwise difficult to reach populations.

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59 EXPLORING THE IMPACT OF POLICIES ON HIV CARE Policies Affecting Mentally Ill Individuals and Substance Abusers Many people living with HIV/AIDS experience mental illness and would benefit from mental health services to help them cope with the emotional and cognitive impact of their condition. In addition, a substantial number of individuals with HIV/AIDS are dependent on substances of abuse. There are large gaps in coverage for mental health and substance abuse treatment for persons with HIV/AIDS. When available, private and public mental health and substance abuse treatment coverage is generally inadequate. Implementation of the Mental Health Parity and Addiction Equity Act of 2008 (P.L. 110-343, Subtitle B, § 511-512) and the ACA will improve coverage. These services will be essential benefits for plans operating in the state-based exchanges in 2014. How Federal and State Agencies Can Provide More Integrated HIV Care Services Systems Integration for HIV/AIDS Care As infection with HIV has evolved into a chronic condition with the advent of HAART, the clinical and social needs of those infected have changed, and questions have arisen about how best to structure programs to meet those needs. Various levels of systems integration for HIV/AIDS services may help individuals receive comprehensive care, optimize their health outcomes, and reduce HIV transmission to others. Federal and state agencies might facilitate integration of HIV care with closely related infectious conditions including STIs, viral hepatitis, and tuberculosis; inte- gration with case management, mental health and substance abuse treat- ment, 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 Medic- aid, a portion of the Ryan White funds currently dedicated to core medical services may be available for support services (e.g., outreach, medical trans- portation, referrals for health care and other support, language services, respite care for individuals caring for persons with HIV). To overcome the problems associated with categorical funding, consideration could be

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60 HIV SCREENING AND ACCESS TO CARE given to having explicit language in notices of grant awards that allows and encourages flexibility in use of the support. Increasing the Role of Community Health Centers One provision of the current plan for health care reform under the ACA is increased funding for CHCs to augment the nation’s capacity to meet the health care needs of individuals who are under- and uninsured. It is of concern that not all CHCs are providing HIV testing and HIV/AIDS care. A Policy Information Notice from HRSA could provide guidance to these CHCs to expand access to HIV/AIDS care services. In high HIV incidence areas, comprehensive HIV testing and care could be provided by CHCs in coordination with state HIV/AIDS programs. Reducing Reporting Burdens Improved data collection and coordination and reduced reporting bur- den on the part of clients, clinics, health departments, and community- based organizations could be facilitated by · treamlining the disparate and redundant data collection and dis- s semination requirements across agencies; and · armonizing reporting requirements across federal agencies (e.g., h HRSA, CDC, SAMHSA). Clinician Training Educating clinicians about the role of state health departments in iden- tifying individuals with HIV/AIDS and linking them to care can help bridge communication gaps that may exist between clinical and public health providers. It is important to ensure the continuation of federally sponsored and other professional training programs, including AETCs and others at HRSA, SAMHSA, and CDC, to further providers’ understanding of health department programs, such as community-based health education and pre- vention activities, surveillance, and HIV-related infectious disease programs (e.g., STIs, hepatitis, tuberculosis). HIV Medication Adherence Programs Policies in Funding HIV Medication Adherence Programs The federal Ryan White program, in addition to paying for antiretrovi- ral therapy through the ADAP program, supports adherence interventions.

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61 EXPLORING THE IMPACT OF POLICIES ON HIV CARE Some ADAP support can be used to increase access to medication, improve adherence, and monitor progress on therapy. Certain requirements must be met, however, in order to use ADAP support for these purposes. Adher- ence support through ADAPs is limited by a federal policy that stipulates that no more than 5 percent of a state’s ADAP funding can be used for services related to adherence. Furthermore, in order for states to be able to use ADAP funding for adherence purposes, they must have no client wait- ing list or limits on enrollment and no restrictions or limitations on HIV medications. States with waiting lists and other restrictions on the program have had to prioritize providing basic access to medications instead of using limited resources for adherence programs. Improving Adherence Ensuring that patients adhere to their treatment regimens is necessary to maximize their health outcomes. Interventions to improve adherence to HIV/AIDS medication regimens can be cost effective. They have been shown to both improve adherence and prevent a decline in adherence. 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) and rules that may limit who within a state can perform duties related to medication moni- toring; and · mplementing adherence interventions that have been demonstrated i to be the most effective, such as those involving the use of devices (e.g., pillboxes, bubble packs) that can help to remind patients of when to take their medications, and those that are interac- tive, open-ended, and multidisciplinary and that include multi- ple sessions, use behavioral skill development, target motivation/ cognition/expectations, and provide periodic reminders.

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62 HIV SCREENING AND ACCESS TO CARE Access to Treatment of Earlier Stage HIV Infection The San Francisco “test-and-treat” program that emphasizes detection (through routine and targeted testing programs) and early treatment of HIV-infected individuals might serve as a model for increasing access to treatment in other jurisdictions. Expanded testing, as discussed in the com- mittee’s first report (IOM, 2010), will help to increase the number of indi- viduals diagnosed with HIV, and identification is the first step in increasing individuals’ access to care at earlier stages of infection. 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. In general terms, newly diagnosed individuals receive at least basic information and counseling, as well as concrete provisions for follow-up care and treat- ment. Various methods for improving treatment adherence and retaining individuals in care already have been outlined. Following diagnosis, one of the primary factors affecting access to care specifically for individuals with CD4 counts greater than 500 is treatment coverage. Decisions by insurers regarding services to cover are often informed by clinical guidelines. Although there is general agreement among professional organizations and government bodies about initiating antiretroviral therapy when the CD4 count is below 500, there is less certainty regarding treat- ment at CD4 counts above 500. Evidence is mounting to support earlier treatment. Early intervention has been associated with improved clinical outcomes (e.g., reduction in inflammation), reduced viral loads, and lower rates of transmission. Although newer treatments have lesser short-term adverse effects, there is concern that longer-term treatment could have adverse impacts on health, such as accelerated aging. Insurers may allow clinicians some discretion in making treatment decisions and may pay claims for HIV/AIDS treatments irrespective of CD4 count. However, specialist care may not be covered and so the expertise of clinicians providing care may be at issue. Eligibility for coverage for people with HIV/AIDS under Medicaid and Medicare often requires meeting cri- teria for disability, which tend to be suggestive of more advanced disease, although under the ACA, persons with HIV who meet the new income threshold will no longer have to qualify on the basis of disability. Provision of maximal (early) care for HIV-infected individuals with CD4 counts and viral loads that do not fall within the current clinical guidelines may be promoted by · nsurers considering coverage of claims for HIV/AIDS treatments, i irrespective of CD4 count;

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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 psycho- social and support services for HIV-infected individuals, leading to better health outcomes.

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