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HIV Screening and Access to Care: Health Care System Capacity for Increased HIV Testing and Provision of Care The Institute of Medicine (IOM), in response to a request from the White House Office of National AIDS Policy (ONAP), convened a commit- tee on HIV screening and access to care in 2009 to plan and host a series of three workshops and data gathering activities to evaluate barriers to expanding HIV testing and treatment. 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). The second report examined 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 (IOM, 2011b). This third and final report explores 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). The committee was asked to consider the following questions as part of its charge for this report: · Where do HIV-positive patients currently get care? · What is the HIV-related training or experience of most HIV care providers (physician, nurse practitioner [NP], physician assistant [PA], registered nurse [RN])? · What manpower or training/experience improvements are needed to absorb more newly diagnosed HIV-positive individuals from expanded HIV testing services? 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 policies 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 policies, 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 prevalence 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 adher- ence 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 indi- viduals 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 HIV SCREENING AND ACCESS TO CARE · 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 and experience to meet future needs? · What are the impediments to professionals entering into or con- tinuing to provide HIV/AIDS care? · What policies inhibit or enhance the movement of health care pro- fessionals into HIV/AIDS specialties? · Are there adequate financial or professional incentives to promote HIV/AIDS as a specialty among the health care professions? The committee hosted its third public workshop September 29-30, 2010, in Washington, DC (see agenda, Appendix C). The committee con- vened experts from academia, government, and provider groups to offer expert testimony. Also in attendance were more than 30 workshop reg- istrants representing patients, providers of HIV testing and care services, researchers, policy organizations, and others with an interest in this topic (see workshop attendees, Appendix D). Invited experts were asked to pres- ent their evidence and perspectives. Following each panel, questions were entertained from the committee and the audience. REPORT ORGANIZATION This report begins with a background section outlining the rationale for expanding HIV testing and the potential challenges of providing quality HIV care to a significantly increased number of patients. The report then summarizes information from the expert presentations and discussion from the public workshop as well as information from a literature review that is relevant to the questions posed to the committee in the third part of the statement of task (see number 3 in Box 1). The report first examines issues surrounding the capacity of the health care system to administer a greater number of HIV tests. The two primary issues raised relate to the personnel and procedures necessary to implement expanded HIV testing successfully in a variety of different venues and to the personnel and procedures needed to provide counseling and linkages to care for individuals who test positive. The report next provides information about where HIV-positive indi- viduals currently receive care. It then addresses the question of HIV-related training or experience of most HIV care providers, both in terms of their current experience and training and in terms of changes needed to accom- modate a greater number individuals diagnosed with HIV. The next section addresses the current capacity of the HIV/AIDS workforce. The following

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4 HIV SCREENING AND ACCESS TO CARE two sections summarize delivery system strategies and models that might help providers to care for a larger number of HIV-infected patients and strategies to increase the number of providers entering and remaining in the HIV/AIDS workforce. The report then addresses the impact of the Patient Protection and Affordable Care Act (ACA) (P.L. 111-148) on the public health and clinical infrastructure. The report concludes with a summary of the committee’s conclusions. BACKGROUND There is a lack of population-based estimates of the numbers of indi- viduals with HIV who are not in care or on treatment, although studies suggest substantial unmet need. There are an estimated 1.1 million people in the United States living with HIV, of which approximately 21 percent are unaware of their infection and so are not receiving HIV/AIDS care (CDC, 2010c). In addition, one analysis of CDC medical record-based data showed that 45 percent of individuals aged 15 to 49 who have been diagnosed with HIV/AIDS and who are eligible for antiretroviral therapy (ART) are not receiving it (Teshale et al., 2005). Moreover, an estimated 56,000 individuals contract HIV each year (CDC, 2010b). Approximately 55 percent of adults between 18 and 64 years of age and 28 percent of people at higher risk for HIV have never been tested (CDC, 2010c). Identification of undiagnosed HIV-positive individuals is important because early treatment improves the health outcomes of persons infected with HIV1 and decreases the likelihood of transmitting the virus to others. However, enhanced screening efforts and subsequent linkages to care for previously undiagnosed individuals and for previously diagnosed individuals who do not receive regular care will place increased demands on organizations and individual health care providers. The present capacity of the health care system to administer a greater number of HIV tests and to accommodate a significant increase in the number of HIV-infected individuals in care is strained. Julie Scofield, Execu- tive Director, National Alliance of State and Territorial AIDS Directors (NASTAD), described the situation as a “perfect storm.” The U.S. reces- sion has led to an increased demand for publicly supported services on the part of those with, or at risk for, HIV. Although resources were insufficient to support the demand for HIV prevention, testing, and care before the economic downturn, federal and state budget cuts in response to the finan- cial crisis have made it more difficult to meet the increased demand for services. At the same time, expanded HIV testing initiatives in response to 1 At least one-third of individuals who test positive for HIV in the United States are tested too late to receive full advantage from treatment (CDC, 2010b).

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5 HIV ScreenIng and acceSS to care FIGURE 1 HIV incidence and prevalence, United States, 1977–2006. SOURCE: Hall et al., 2008. CDC recommendations to promote routine HIV testing (CDC, 2006) have brought more individuals into care.2 In addition, earlier and more effective treatment has greatly improved survival among HIV-positive individuals. It is estimated that by 2015 one half of people living with HIV/AIDS will be over the age of 50 (Effros et al., 2008; Myers, 2009). Although most of these individuals are long-term survivors of HIV, in 2007, people age 50 and over accounted for 16 percent of new HIV diagnoses (CDC, 2007). Figure 1 shows the increase in the number of people living with HIV/AIDS from 1977 to 2006. In the face of this success, however, serious concerns have arisen regard- ing the health care system’s ability to meet the growing demand for HIV testing, access to medications, and linkages to sustained care. Additional factors that affect the ability of the workforce to address the needs of HIV-positive individuals include the complexity of care resulting from improved survival (older individuals with HIV often experience more complex psychosocial and care needs, including increased stigma, dementia, and other comorbidities [GMHC, 2010]), the relatively low numbers of new providers specializing in HIV care, severe provider shortages in rural areas and urban centers with high minority concentrations, and the need 2 See the committee’s report of the first workshop, Exploring Barriers and Facilitators to Expanded HIV Testing (IOM, 2010) for a discussion of the 2006 CDC recommendations for routine HIV screening.

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6 HIV SCREENING AND ACCESS TO CARE for increased cultural competency among providers to treat an increasingly diverse client population (HRSA, 2010c). At the same time, the initial wave of HIV care providers are approaching retirement age and are either reducing their practices or retiring completely. Taken together the increasing demand for HIV care services and anticipated decrease in the relative num- ber of providers practicing HIV medicine raises concerns about the ongoing ability of the workforce to meet the needs of the HIV/AIDS population in the United States, especially as enhanced screening efforts are expected to increase the number of individuals diagnosed with HIV. Additionally, changes that are anticipated to result from the ACA potentially could further increase demand on the HIV care workforce. Med- icaid is the largest single source of care and coverage for people with HIV with approximately 40 percent of patients receiving services through Med- icaid (KFF, 2009b). Medicaid expansion under the ACA expands income eligibility to a national floor of 133 percent of the federal poverty level and is expected to bring millions of low-income individuals, including individu- als with HIV, into the Medicaid program. The elimination of categorical eligibility requirements, such as disability, for Medicaid under the ACA is also likely to bring many more individuals with HIV into the program (IOM, 2010). Grave concern exists about the capacity of the health care workforce to implement expanded testing for HIV throughout the United States and to provide competent HIV/AIDS care to significantly increased numbers of patients. A variety of approaches will be needed to respond to these challenges. The current comprehensive and integrated model of care often exhibited by Ryan White-funded clinics provides a foundation upon which future care systems could be structured.3 EXPANDED HIV TESTING Since the beginning of the HIV epidemic, HIV testing and counseling traditionally have been administered by providers who are specifically trained in these areas, and providers not trained in HIV testing and coun- seling would refer patients out to those who were. As a result, providers who have practiced in this environment are less well-equipped to mentor their students and residents in the provision of HIV testing. The practice of referring patients for HIV testing may also have contributed to patients’ belief that their provider does not perform HIV testing. A cultural shift is 3 As noted in a 2001 IOM report, integrated care helps to overcome the problems of patient “handoffs” that slow down care, voids in patient coverage for care, loss of information, and failure to build on the strengths of all health professionals involved to ensure that care is ap- propriate, timely, and safe (IOM, 2001).

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7 HIV SCREENING AND ACCESS TO CARE needed within the education of students and residents so that over time providers become better equipped to perform HIV testing and counseling and less inclined to refer their patients elsewhere. Timely diagnosis and treatment can improve survival and quality of life among HIV-positive individuals and reduce the likelihood that they will transmit the disease to others. These reasons provide impetus to increase identification of previously undiagnosed HIV-positive individuals through measures such as the 2006 CDC recommendations for routine screening for HIV for individuals between the ages of 13 and 64 (CDC, 2006). Between 2006 and 2009, the percentage of Americans aged 18 to 64 who reported being tested for HIV at some point in their lives grew only from 40 percent to 45 percent (CDC, 2010c, p. 2). In light of continuing efforts to increase testing for HIV in the United States, the committee was asked to evaluate the current capacity of the health care system to administer a greater num- ber of HIV tests. In a recent survey of the 65 jurisdictions receiving CDC funding for HIV prevention activities, 75 percent (43 health departments) reported providing financial and programmatic support for the implementation of routine HIV testing for all patients 13 to 64 years of age, in accordance with the 2006 CDC recommendations (NASTAD, 2010, p. 12). Of the 43 health departments that provided support for routine testing, the greatest majority (79 percent) supported routine testing in sexually transmitted disease (STD) clinics. Sixty percent supported routine testing in hospital emergency departments (EDs) and community health clinics, and 51 percent supported routine testing in substance abuse treatment centers, correctional facilities, and family planning clinics (see Table 1). The first report of the Committee on HIV Screening and Access to Care discussed the various barriers and facilitators to expanding access to HIV testing (IOM, 2010). Recent data from the CDC indicate that in 2009 82.9 million adults between 18 and 64 years of age in the United States reported having been tested at least once for HIV, which represents an increase of 11.4 million since 2006 when the CDC recommendations to expand HIV testing went into effect (CDC, 2010c,e). Despite the progress that has been made, it is estimated that 55 percent of adults (including 28.3 percent of adults with a risk factor for HIV) still have never been tested for HIV (CDC, 2010c,e). Increased testing within the senior population faces unique or greater challenges, such as the stereotype that seniors are not sexually active, greater resistance to discussing sexual activity with health care providers, less knowledge about HIV transmission and prevention, and unique biological risk factors (GMHC, 2010; Myers, 2009). Kathryn Hafford, Director, Division of Disease Prevention, Virginia Department of Health, described how a survey conducted two years after Virginia changed its law to be consistent with CDC recommendations

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8 HIV SCREENING AND ACCESS TO CARE TABLE 1 Health Care Settings in Which Health Departments Support Routine HIV Testing Health Care Settings in Which the Health Department Reported % Responding Supporting Routine HIV Testing (n=43) STD clinics 79% (34) Hospital emergency departments 60% (26) Community health clinics 60% (26) Substance abuse treatment centers 51% (22) Corrections 51% (22) Family planning clinics 51% (22) TB clinics 42% (18) Prenatal/obstetrical clinics 35% (15) Primary care clinics 28% (12) Labor and delivery 28% (12) Urgent care clinics 19% (8) Hospital inpatient settings 19% (8) Hospital outpatient settings 16% (7) Other (e.g., ASO, CBOs) 30% (13) SOURCE: NASTAD, 2010, p. 12 found that despite educational outreach efforts, providers did not know that written informed consent was no longer needed prior to administering a routine HIV test. Rates of documented routine prenatal HIV testing did not increase following the state’s change in law. Experience with routine prenatal testing varies from state to state, however. In Rhode Island, for example, prenatal testing increased from about 53 percent in 2006 to more than 90 percent following implementation of routine opt-out testing (Alexander et al., 2009). Hafford indicated that additional provider train- ing is needed so that the legal obligations regarding HIV testing are clear. Once these and other barriers to the implementation of expanded HIV testing are overcome, the question remains whether various components of the health care system have the capacity to provide such screening. In addition to the need for adequate space to permit privacy when interacting with patients about HIV testing, the primary concern about capacity centers on the question of a sufficient number of adequately trained personnel. A second, somewhat related, general concern is the degree to which testing can be incorporated into the present work flow at facilities. The greater the extent to which it can, the less the need for additional personnel to accom- modate the associated tasks.

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9 HIV SCREENING AND ACCESS TO CARE Hafford explained that the Virginia Department of Health, as in most other states, has received substantial funding to develop and promote rou- tine testing programs around the state. The health department found that the capacity and desire to implement testing programs, as well as the need for support, vary greatly among venues. Some providers say that all they need is funding for test kits and the testing procedure or to hire additional staff; others say that they will not implement a program unless the health department provides the staff. Incorporation of routine HIV testing into office visits with family prac- titioners and other primary care providers may present smaller obstacles in terms of logistics and provider capacity. However, some providers do not view such testing as their primary responsibility, and some dismiss the need for such screening among their patients, whom they may view as being at low risk for HIV. This is another area in which provider education may prove beneficial in helping to increase the number of tests performed. In general, however, health department support for HIV testing has resulted in more testing in private settings. Hafford pointed out that many pro- viders are not opposed to testing, but indicated that some providers feel overwhelmed by the prospect of diagnosing and caring for HIV-positive individuals and that they often do not know how to expand HIV testing. Additional training to increase providers’ familiarity and comfort with the processes of HIV testing (e.g., counseling and referral mechanisms for patients diagnosed with HIV, as well as guidance in incorporating routine testing into their practices) may be beneficial here as well. Based on her experience with health department supported testing programs in Virginia, Hafford reported that testing in non-primary-care settings increases when support is provided but that such increases require a great deal of support. New HIV testing programs in these settings have been successful in identifying previously undiagnosed HIV-infected persons, but staff members have required oversight to ensure that quality standards surrounding testing are being met. In addition, peer navigators had to be hired to ensure that individuals who test positive are linked to care.4 Since EDs are likely to see patients at higher risk for HIV, testing for HIV in EDs may help to identify individuals with undiagnosed HIV infec- tion. However, there are barriers to the implementation of increased HIV testing in EDs. Compared with patients in other medical settings, patients visiting EDs may be more difficult to locate once they leave. Consequently, conventional HIV testing for which results would not be available during the same visit may not be performed because of provider liability con- 4 Hafford estimated that the cost per successful linkage is from $1,000 to $1,200. This estimate includes provider education and training and the staffing time needed to promote linkages to care.

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10 HIV SCREENING AND ACCESS TO CARE cerns. Use of rapid HIV tests, which generate results within minutes, can help to address this concern and reduce the number of people who fail to receive their test results (Branson et al., 2006). The administration of rapid HIV testing in EDs has been found to be acceptable to ED provid- ers and patients (Brown et al., 2007; Freeman et al., 2009; Merchant and Catanzaro, 2009).5 Other barriers to increased HIV testing in EDs remain however. Most notably, because ED providers are concerned with addressing their patients’ immediate health care needs, they may not have the time or other resources to perform routine HIV testing. As discussed in greater detail later, use of hospital-based laboratories for the processing of rapid tests (or expedited processing of conventional tests) would help to address some of these con- cerns and may help HIV testing fit more seamlessly into the ED workflow and minimize the impact on existing personnel. Providers also may be concerned about how to approach individuals about HIV testing. Several issues arise, including a lack of comfort among many providers in addressing matters pertaining to individuals’ sexual his- tory and practices. Providers additionally are concerned about the amount of time potentially needed to counsel patients who test positive and link them into care. Hafford described how providers who have worked with HIV/STD or high-risk clients are more comfortable with providing HIV testing. However, providers without such experience often feel unprepared to handle a positive test result. In fact, she mentioned that some providers in her state ask the health department to handle all positive test results. She indicated that education and guidance in this area are needed and that health professional schools are not spending enough time training students in taking a sexual history and providing counseling. Hafford indicated that, as frequently is the case in hospital EDs, some community health centers (CHCs) already are so overwhelmed by patient case loads that they resist the addition of routine screening to the services they provide. Often the CHCs that are most interested in establishing rou- tine HIV testing are in rural areas with a lower percentage of HIV positive individuals. These centers have the time and the personnel to introduce 5 Conventional testing refers to the use of ELISA (or enzyme immunoassay [EIA]) tests to detect the presence of HIV antibodies in blood, oral fluid (mucus, not saliva), or urine. The test takes 3.5 to 4 hours to run, but samples generally are processed in batches and frequently are sent to outside labs, resulting in a wait of a day or two to 1 to 2 weeks for the result (http://www.cdc.gov/hiv/topics/testing/resources/qa/index.htm [accessed March 3, 2011]; San Francisco AIDS Foundation, 2009). Rapid testing refers to the use of a test strip to detect the presence of HIV antibodies by visually comparing the test window to a control window. Similar to a home pregnancy test, rapid HIV tests provide results in as little as 20 minutes (http://www.cdc.gov/hiv/topics/testing/resources/qa/index.htm [accessed March 3, 2011]; San Francisco AIDS Foundation, 2009).

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11 HIV SCREENING AND ACCESS TO CARE routine testing, but they do not see many HIV-positive patients, raising the issue of how to prioritize the distribution of health department support for routine HIV testing programs. Finally, Hafford noted the difficulty the Virginia health department has experienced in getting buy-in to routine screening from correctional facilities. For example, testing within correctional facilities (and some other high-risk settings) often depends on the willingness of the health depart- ment to provide counseling and other services associated with the identifica- tion of a positive case. Committee member Beth Scalco mentioned that this dependence on the health department support is also present in Louisiana. Andrew Young, Associate Professor, Emory University School of Medi- cine, also provided the committee with information on the capacity impli- cations of expanded HIV testing, addressing both the ED and clinical laboratory settings. HIV testing in EDs can occur by either rapid testing or expedited conventional testing6 in the hospital laboratory or by rapid testing directly at the point of care. Young discussed the advantages and disadvantages of each approach. The advantage of conventional testing when next-day turnaround times are acceptable (e.g., for hospital inpatients) is the laboratory’s ability to accommodate a greater increase in testing, due to automation, without additional equipment, testing personnel, or training, according to Young. However, the implementation of routine testing programs with imme - diate processing of samples so that results become available during the patient encounter creates challenges for laboratories and testing personnel. Although such immediate testing is favored by many organizations because of better patient acceptance, follow-up, and linkages to care (Freeman et al., 2009; Haukoos et al., 2008; Jain et al., 2008), laboratories may not be able to provide expedited conventional testing for a large number of specimens because conventional HIV tests often are performed on batch analyzers. Different equipment, such as random-access analyzers,7 likely would be necessary to provide continuous expedited testing, but not all laboratories have such equipment. Therefore, in order for in-house laboratories to sup- port extensive HIV testing through expedited conventional testing, new funds, space, and personnel likely would be needed. In addition to these laboratory-specific resources, new hospital staff, resources, and training may be needed to process test orders, obtain and transport specimens, 6 Expedited conventional testing would involve the hospital laboratory running a conven- tional HIV test either individually or in small batches so that the results could be delivered while the patient is still in the ED. In addition to other drawbacks, such an approach still would require a number of hours to perform, making it less timely than the use of rapid testing. 7 For more information, see http://www.hivandhepatitis.com/recent/2008/060608_e.html (accessed March 3, 2011).

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54 HIV SCREENING AND ACCESS TO CARE Conclusions Declining interest in primary care among medical trainees is partially responsible for current and anticipated HIV/AIDS workforce shortages. This disinterest can be traced to financial pressures facing trainees (e.g., mounting education debt and considerations of future income) among other factors. Difficult working environments leading to stress and burn- out are also evident among all HIV professionals. Primary care physicians often work long, unpredictable hours and are burdened by administrative responsibilities (e.g., communicating with insurance companies, document- ing care). Deficiencies in training, specifically the lack of outpatient setting experiences and opportunities to be mentored by HIV/AIDS experts, mean that medical trainees gain little insight into the potential for a satisfying career in HIV/AIDS. The growing interest of those trained in infectious diseases in the alleviation of HIV/AIDS suffering overseas comes at the expense of domestic care. The lack of exposure of entry- and graduate-level nursing students to HIV/AIDS related curricula and clinical experiences has contributed to the shortage of RNs and APRNs in HIV/AIDS care. The reliance on grants and unstable sources of financial support on the part of many of the community-based clinics that serve HIV-infected individuals also deters nurses from entering the field of HIV/AIDS care. In addition, state licensing regulations that restrict the scope-of-practice for APRNs and payor reim- bursement policies may deter some APRNs from entering the field. Some APRNs and RNs do receive HIV/AIDS specialty certification or credentials; however, there are no financial rewards associated with developing HIV/ AIDS expertise. There also are shortages of physician assistants entering HIV/AIDS care. As in other health professions, this may stem in part from a lack of specific focus on HIV/AIDS care during their initial professional training, as well as the absence of financial incentives to enter the field. In summary, there are inadequate financial and professional incentives to promote HIV/AIDS as a specialty among the health care professions. Options to consider to encourage HIV/AIDS specialization among phy- sicians, APRNs, RNs, and PAs include loan repayment/forgiveness and scholarships for trainees, the use of reimbursement mechanisms to compen- sate HIV/AIDS specialists fairly, and the provision of adequate and stable financial support to clinics serving HIV/AIDS patients. Financial incentives (e.g., loan forgiveness) may also be used to attract practitioners of diverse races and ethnicities, as well as to encourage providers to practice in and among traditionally underserved areas and populations. Steps to reform medical, nursing, and other health professional curri- cula to increase opportunities to learn about outpatient care for HIV/AIDS

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55 HIV SCREENING AND ACCESS TO CARE patients are important to promote interest in the field among trainees and to encourage collaboration, collegiality, and retention among more experi- enced providers. Another strategy to improve retention is to promote inter- actions between HIV specialists and primary care generalists, particularly in the community health care setting. CHCs serve as the medical home for many HIV/AIDS patients, and also play a critical role in care coordination for those patients. Collaboration among colleagues may alleviate some of the burdens of the workplace, as well as the sense of isolation that some practitioners may experience, especially in rural or other underserved areas. The development of patient-centered models of care and the use of inter- disciplinary care teams in the provision of HIV/AIDS care not only may improve patient care, but also may improve job satisfaction among the providers. IMPACT OF THE AFFORDABLE CARE ACT ON THE PUBLIC HEALTH AND CLINICAL INFRASTRUCTURE Jeffrey Levi, Executive Director, Trust for America’s Health, provided the committee with an overview of the issues related to the testing and treat- ment of HIV-infected individuals and the potential impact of the ACA. Levi cited literature supporting the need for insurance reform for HIV-infected individuals. According to a recent CDC study of 21 U.S. cities, 57 percent of HIV-infected men who have sex with men are uninsured. Furthermore, 81 percent of those who were unaware of their HIV infection had not visited a health care provider in the past year (CDC, 2010d).45 This study provides further evidence that expanding insurance coverage and improving provider capacity could greatly increase opportunities to bring many at-risk individuals into care. Levi outlined some of the shortcomings of the health insurance system that have limited access to care for HIV-infected individuals. First, Medic- aid traditionally has been restricted to those who are very poor and who also meet certain criteria, for example, those who are disabled, pregnant, or children. Second, Medicare eligibility for people under age 65 has been restricted to those who have long-term disabilities (i.e., 29 months, with two waiting periods) and there have been limits to prescription drug cover- age (i.e., the “donut hole”) whereby, after a certain amount of charges for prescription drugs has been incurred, beneficiaries are temporarily respon- sible for paying 100 percent of their prescription drug costs (RWJF, 2010). Third, private insurers often deem HIV-infected individuals uninsurable or 45 Thepopulation of men without health insurance are likely represented in the population of men without health care visits.

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56 HIV SCREENING AND ACCESS TO CARE require high premiums and/or lifetime limits on coverage for those they have insured. Levi reviewed provisions of the ACA that will improve health insurance coverage for individuals with, or at risk for, HIV/AIDS. By 2014, the ACA will greatly expand Medicaid to cover individuals with incomes up to 133 percent of the federal poverty level (FPL). In addition, income level will be the sole eligibility criterion with no need to meet additional categorical requirements (e.g., disability). Until 2014, states may elect the option to extend Medicaid to individuals with incomes up to 133 percent of the FPL. In addition, for Medicare beneficiaries there will be a gradual closing of the prescription drug coverage gap beginning in 2011 (RWJF, 2010). In the private insurance market, there will be guaranteed issue46 of health insur- ance by 2014 (and a mandate to have health insurance coverage). Private insurers will have to limit their underwriting to age, geography, and smok- ing history (e.g., no HIV history restrictions). Subsidies will be available for those with incomes between 133 and 400 percent of the FPL and who are unable to afford private health insurance (covering both premiums and cost sharing). By 2014, routine costs associated with participation in clini- cal trials also will be covered by private plans. Coverage of preventive services under the ACA will expand as well but will vary by insurance provider: · New plans offered by private insurers will be required to cover, without cost sharing, preventive services rated A or B by the USP- STF, immunizations recommended by the Advisory Committee on Immunization Practices (ACIP), and certain preventive care services recommended by HRSA for infants, children, adolescents, and women. · Under Medicaid, the federal government will offer a 1 percent increase in the federal match to states that offer Medicaid coverage of, and remove cost sharing for, A and B USPSTF recommended services and ACIP recommended immunizations (effective January 1, 2013). · Medicare will eliminate cost sharing for Medicare-covered preven- tive services that are USPSTF recommended A or B services. As mentioned earlier, routine HIV screening (i.e., testing of those not at increased risk) is rated C by the USPSTF and therefore is not included in the aforementioned extensions of coverage (IOM, 2010). Boswell described how reimbursement for HIV care provided in health 46 Guaranteed issue is a requirement that a health plan enroll individuals regardless of health, age, gender, or other factors that might predict the use of health services.

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57 HIV SCREENING AND ACCESS TO CARE centers will be affected by the ACA. The ACA requires insurance exchanges to include all 340B eligible providers,47 such as FQHCs and state ADAP programs, in their networks. Also under the ACA, insurance exchanges will pay FQHCs no less than the rate provided under their Medicaid prospective payment system (PPS) (a method of reimbursement where payment is based on a predetermined, fixed amount). Payment to FQHCs for patients covered by Medicare will be based on a modified PPS that includes all preventive benefits and elimination of current caps and screens. A phased transition of financing HIV/AIDS care is needed as future methods of reimbursement under the ACA are untested and will require years to develop (e.g., account- able care organizations [ACOs], Alternative Quality Contract). Although many ACA provisions will not be phased in until 2014, some are effective immediately: · Individuals denied insurance coverage due to a pre-existing condi- tion have immediate access to federally subsidized high-risk pools. · Private insurers cannot rescind an insurance policy, for example, canceling insurance after a claim is made. · Pre-existing condition exclusions for children have been eliminated. · Lifetime caps on coverage have been eliminated and annual caps have been subject to regulation. · Coverage of children under a family plan has been extended to age 26. Levi described some of the efforts to expand health care capacity under the ACA: · To expand the safety net, $11 billion has been allocated over the next 5 years to CHCs. · In FY 2010, $30 million was made available to the CDC, of which $21.6 million is to be used for HIV testing. · As of 2013, temporary improved reimbursement rates will be offered to Medicaid providers (these Medicare reimbursement rates will expire after 2014). · Community Transformation Grants will begin to be available in 2011 to facilitate policy, structural, and environmental change favoring prevention. 47 PublicHealth Service Act Section 340B limits the cost of covered outpatient drugs to cer- tain federal grantees, federally-qualified health center look-alikes, and qualified disproportion - ate share hospitals. Participation in the program results in significant savings estimated to be 20 percent to 50 percent on the cost of pharmaceuticals for safety-net providers (HRSA, 2011).

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58 HIV SCREENING AND ACCESS TO CARE · A program to support community health workers will be supported as of 2011. In conjunction with previous investments made through the American Recovery and Reinvestment Act, provisions of the ACA are designed to support the training, development, and placement of more than 16,000 new primary care providers over the next 5 years. Among other efforts, an allocation of $250 million from the Prevention and Public Health Fund48 in 2010 is providing new resources for the training of 500 new primary care physicians by 2015, more than 600 new PAs, and 600 additional NPs. The allocation also helps to establish new NP-lead clinics in medically underserved areas and provide support for states to develop and implement strategies for expanding their primary care workforces over the next 10 years.49 Although not specifically addressing the need for more HIV/AIDS providers, these steps should help to increase the primary care workforce in general. The ACA has several provisions to support quality improvement efforts. HIV issues are included on the agenda for comparative effective- ness research. Major investments in health information technology also will improve capacity for HIV surveillance and for measuring the quality of HIV care. Levi pointed out that although expansions in coverage and focus on prevention are welcome, they do not necessarily guarantee adequate access to preventive services and care. Many challenges to the implementation of the ACA remain. For example, yet to be determined is the “essential health benefits package” that insurers will be required to cover. States will be determining the full range of benefits for the expanded Medicaid population so there likely will be significant variation across the country. States can choose between the relatively comprehensive standard Medicaid package and a “benchmark” program that would be more like a private plan. In addition, the makeup of health care provider networks is not well defined. Whether Ryan White providers or “expert” HIV providers will be included in networks is to be determined. Finally, how reimbursement for HIV testing will be administered is unclear. For example, alternative testing 48 Established as part of the ACA, the Prevention and Public Health Fund is a 10-year $15 billion commitment designed to help create the necessary infrastructure to prevent disease, detect it early, and manage conditions before they become severe. Among other things, this new initiative will increase the national investment in prevention and public health by, for example, supporting preventive health services such as smoking cessation, exercise programs, and other efforts to reduce the burden of chronic diseases. 49See http://www.healthcare.gov/news/factsheets/primarycareworkforce.html (accessed March 15, 2011).

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59 HIV SCREENING AND ACCESS TO CARE sites that currently receive grant support for HIV tests may be required to submit insurance claims for individuals with insurance coverage. The fate of the Ryan White program after implementation of the ACA is also uncertain. Ryan White was initially meant to be a temporary mea- sure until more fundamental changes in health care insurance and provision could be developed. Over time the Ryan White program has evolved to accommodate new and emerging needs. Originally designed in part to pro- vide emergency assistance to areas disproportionately affected by the HIV epidemic, it now serves to fill gaps in medical care and to provide support services that are not covered by other funding sources. Many workshop participants raised concerns over the many services that are needed by persons living with HIV that are not generally covered by health insurance. These wraparound services, such as case management and substance abuse and mental health services, may be vulnerable under the ACA. Prescription drug coverage under ADAP is an essential Ryan White program whose future is uncertain now that the ACA has been passed. The Ryan White program also has been able to provide services to individuals who are excluded from health care coverage under the ACA. In his remarks, Boswell suggested that to better understand how best to allocate scarce personnel and resources, studies are needed to document models and best practices for HIV care. The CMS Innovation Center, for example, could evaluate the impact of the Ryan White model for patient- centered, medical-home care on patient outcomes and costs of care. Levi concluded his remarks by pointing out that until 2014, there are opportunities to gain coverage of vulnerable populations through high-risk insurance pools and to make investments in preventive services. By 2014, there are opportunities to redesign health care programs to meet the needs of those who are in need of HIV/AIDS services. Committee member Ron Bayer asked Levi to describe how the Ryan White program might be reshaped after implementation of the ACA. He pointed out that the Ryan White program covers some essential services that health insurance was never designed to address (e.g., outreach and patient navigation). The demand for some services, now covered by Ryan White, will decline as uninsured individuals gain coverage. Levi and Cheever raised the concern that the reauthorization of the Ryan White program will take place in 2013 before full implementation of the ACA. There are risks associated with changing the program before the implications of the ACA are known. Arleen Leibowitz from the committee asked Levi about reimbursement mechanisms that might be used by ACOs and whether risk adjustment has been considered to take into account the complex care requirements of HIV/AIDS patients and others with chronic conditions. Levi replied that

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60 HIV SCREENING AND ACCESS TO CARE these types of adjustments are needed, but that decisions about such reim- bursement mechanisms have not yet been made. Committee member Eric Bing asked Levi about options that undocu- mented individuals will have in terms of gaining insurance. Levi replied that undocumented individuals with HIV may have access to care through CHCs, which do not have the same restrictions as other programs with respect to the individuals to whom they may provide services. Access to care for undocumented individuals would depend on the adequacy of sup- port going to CHCs. Committee member Scott Burris asked about marginalized populations’ access to care following implementation of the ACA, for example, individu- als who are in and out of prison and/or who use intravenous drugs. Levi mentioned that many such individuals would be eligible for Medicaid and that ease of enrollment will be important to ensure access to care. Another issue for this population is whether culturally competent providers will be available in provider networks and whether a usual provider of care, for example, a community-based clinic dependent on discretionary support, will remain as a viable provider following implementation of the ACA. Committee member Martin Shapiro asked whether certain portions of the ACA are more vulnerable to legislative change than others and whether, in the wake of the ACA, the Ryan White Care Act may be vulnerable. Levi replied that support for the Ryan White program has, in general, been con- stant and bipartisan. In terms of the ACA, Levi pointed out that retaining popular aspects of reform (e.g., elimination of underwriting) while repeal- ing other less popular provisions would have significant fiscal ramifications that would be identified by the Congressional Budget Office. Consequently, in his opinion, changing the ACA may prove difficult. Committee member Susan Cu-Uvin called attention to the centrality of CHCs in the ACA and asked Levi to anticipate how HIV/AIDS patients would be served following the implementation of the ACA. Would patients, for example, receive primary care from a CHC and then get referred to a Ryan White program for HIV/AIDS specialty care? She observed that many HIV/AIDS patients receive all of their care, primary and specialty care, within Ryan White programs. Saag added that the shifting focus to CHCs for HIV care is a potential threat to Academic Health Centers that want to remain engaged in HIV care. Levi indicated that the main factor that will determine the site of patient care is the makeup of provider networks. It is unclear in the early days of the ACA how the networks will be defined and whether Ryan White providers will routinely be included in them. Levi speculated that there will be a redistribution of money in the system that will potentially also affect the distribution of patients across care sites. Levi suggested that HRSA may need to resolve some issues around

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61 HIV SCREENING AND ACCESS TO CARE its “payor of last resort” provisions. Ryan White providers are obligated to obtain reimbursement for services rendered from all available insurers before using Ryan White dollars. With an expanded population of individu- als with third party insurance, Ryan White programs will be in a position to seek third party reimbursement more often. If health care services are being supported through insurance payments, Ryan White funds might be redirected to other services. When asked by committee chairman Paul Cleary to outline his main conclusions, Levi indicated that there are three main areas to consider as the ACA is implemented: 1. How health care benefits are defined by insurers and which clini- cians (including, e.g., APRNs and PAs) should be included in pro- vider networks are the main “threshold” issues for HIV/AIDS care providers and patients under the ACA. 2. Ensure that HIV/AIDS is a fundamental part of new prevention initiatives such as the Community Transition Grants and the com- munity health workers program. 3. Maintain discretionary program funding streams that provide wraparound services needed by HIV/AIDS patients at least until full implementation of the ACA and evaluations are completed to assess the adequacy of HIV/AIDS services under new delivery and reimbursement structures. Conclusions Full implementation of the ACA would address shortcomings of the current health insurance system. It would ease restrictions and expand access to Medicare (prescription drug coverage) and Medicaid and private insurance programs. To bolster the nation’s health care safety net, the ACA increases support to CHCs, temporarily improves reimbursement to Med- icaid providers, and makes investments in public health programs. The fate of the Ryan White program under the ACA is uncertain. The program is to be reauthorized in 2013, before full implementation of the ACA in 2014. Because certain essential HIV/AIDS services and providers are only avail- able through the Ryan White program, workshop participants felt strongly that key components of the program are vital. With increased support of CHCs, there are some concerns that academic-based HIV/AIDS programs which have served as centers of excellence of HIV/AIDS care may be in jeopardy. It is unclear how sites of HIV/AIDS care might shift following implementation of the ACA. The need to maintain centers of excellence of HIV/AIDS care provides another rationale for maintaining key elements

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62 HIV SCREENING AND ACCESS TO CARE of the Ryan White program as these have been essential to the support of academic programs. SUMMARY In the wake of the 2006 CDC recommendations to implement routine HIV testing in health care settings for individuals 13 to 64 years of age, state health departments and other organizations are receiving financial sup- port for the development and implementation of HIV screening. However, it is not clear whether the support has been sufficient, and the long-term sustainability of the programs is in question, especially once outside fund- ing ceases. It is clear that sustainable programs need to fit as seamlessly as possible into the care flow of the venues in which they are instituted, which will necessitate the use of different testing procedures in different venues. A willingness and flexibility to develop and implement procedures that best match the needs of the setting are important to the success of expanded HIV testing efforts. A big challenge to the implementation of routine HIV testing, especially in busy, high-volume settings where patient follow-up is more challenging, is the question of who will inform and address the needs of individuals who are found to be HIV-positive. Providers in these and other HIV testing venues may have neither the comfort level nor perceive themselves to have the expertise to respond to these patients. In addition to training for providers on the provision of HIV counseling and education, the availability of resources (e.g., computer/Internet tools) to help provid- ers link patients with care and treatment, as well as psychosocial support, could help in this regard.50 In assessing the current capacity of the health care system to incorpo- rate an increased number of HIV-positive individuals into care, the com- mittee encountered a paucity of data on patterns of care for HIV/AIDS patients. The most comprehensive, nationally representative study of sites of HIV/AIDS care is the now dated HIV Cost and Services Utilization Study. Although more recent data are available from Ryan White providers, that sample is limited to those receiving Ryan White funding. Similarly, there is a lack of data on the HIV-related training of providers. Nevertheless, it is clear that primary care physicians, infectious disease specialists, APRNs, and PAs provide the vast majority of medical care for HIV-positive individuals. Registered nurses, dentists, pharmacists, and social workers are among the providers necessary to provide quality HIV/ AIDS care in a variety of settings. In terms of training, one of the challenges 50 One example is the CDC National Prevention Information Network, which contains a list of HIV/AIDS counseling, testing, and referral resources (see http://www.cdcnpin.org/scripts/ hiv/ctr.asp [accessed March 3, 2011]).

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63 HIV SCREENING AND ACCESS TO CARE is the emergence of HIV as a chronic medical condition, increasing the com- plexity of treating HIV-positive individuals. Infectious disease specialists and primary care providers who are HIV experts due to substantial patient care experiences, formal training, or both, are generally better-prepared to manage HIV disease than are primary care generalists, who lack such experience or expertise. However, most HIV-positive patients can benefit greatly from the broader skills of primary care providers in addressing their other health care needs. Another clear message is the lack of adequate provider training and experience in HIV care, especially in outpatient clinics, where most routine HIV care now occurs. Increased exposure of trainees to outpatient HIV care throughout school and post-graduate (residency) training, as well as new and ongoing provider training through continuing education programs, is crucial to developing and maintaining a sufficient supply of appropri- ately trained providers to accommodate increased numbers of HIV-positive individuals. Moreover, there are more clinicians retiring from or leaving HIV care than there are new clinicians entering the field. At the same time, the num- ber of HIV-positive patients in care is growing, due to increased longevity as well as increased numbers of newly diagnosed individuals. Efforts to bring into care individuals with HIV who currently do not receive regular care will further increase that number. For example, the changes to Medicaid eligibility criteria under the ACA are likely to increase the number of indi- viduals with HIV accessing care. It is important to have not only adequate numbers of HIV care providers, but also adequate racial/ethnic diversity and cultural competency among providers given the large percentage of HIV patients from racial/ethnic minority populations (HRSA, 2010a). A number of strategies could help to maximize the capacity of the health care workforce to accommodate the increased demand for HIV care. Delivery system strategies, such as task shifting, comanagement, and care coordination models, including integrated delivery systems, are designed to maximize the capacity of the current workforce to provide quality care to HIV-positive individuals. “Pathway” strategies are designed to increase the supply of HIV-trained care providers through, for example, greater exposure of trainees to HIV care and financial and other incentives to encourage more providers to enter HIV care. The current and projected capacity of the health care workforce to implement routine testing for HIV throughout the nation and to provide competent HIV/AIDS care to significantly increased numbers of patients is of grave concern. Clearly, a variety of approaches will be needed to meet the needs for diagnosis and treatment of HIV-positive individuals in the United States. In addition, barriers to the ability of providers such as APRNs to practice to the full extent of their education and training will need to be

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64 HIV SCREENING AND ACCESS TO CARE addressed. The current Ryan White model of care, which provides a wide range of medical and nonmedical services, allows for task shifting across provider levels to the extent permitted by state regulations, and supports the provision of comprehensive services, offers an example of the type of integrated delivery system that serves HIV/AIDS clients well and upon which future care systems could be modeled. Regardless of the approach taken, the committee was impressed by the urgency of addressing these HIV/AIDS care capacity issues. With each additional HIV infection detected, the care system inherits a responsibility to counsel, refer, treat, and monitor an additional patient, at an average per-infection cost of $19,912 per year (Gebo et al., 2010). Interruptions in care, such as have occurred with the freeze on some ADAP programs, and the provision of inadequate care due to long waiting periods and provider shortages are costly not only in human suffering and lost productivity, but also in increased transmission, with each new infection adding a very costly liability for the future ($355,000 for HIV treatment alone [CDC, 2010a]).