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February 2001
HIV Disease in Individuals Ten percent of AIDS cases reported in the United States have been among individuals ages 50 and above.1 With highly active antiretroviral therapy (HAART) extending lives much beyond what was hoped for just 5 years ago, more individuals are living into their sixth decade and beyond. Simultaneously, changes in demographic patterns and social norms may be increasing the risk for HIV among people in their 40s, 50s, and 60s. The convergence of these factors warrants increased attention to the impact of HIV disease among older Americans. Demographic Trends The population is becoming older with the maturing of the "baby-boomer" generation. Social norms about divorce, sex, and dating in America are changing, and drugs like Viagra are facilitating a more active sex life. Consequently, the risk of exposure to HIV for older Americans is increasing. Yet, little in the public dialogue acknowledges the risk for HIV infection after youth has passed, or that individuals have sexual relationships throughout their lives, or that the threat of substance abuse is not necessarily mitigated by the aging process. A study from the National Institute on Aging substantiates concerns that HIV/AIDS education programs are overlooking older people. Dr. Isaac Montoya, an HIV researcher with Affiliated Systems Research of Houston, confirms that the public discourse about sexually transmitted diseases, HIV infection, and substance abuse tends to focus on young people in their teens, twenties and thirties. Few programs target older Americans.2 A Chicago study has attempted to measure the risk for HIV among older men who have sex with men. Researchers compared sexual behaviors among 432 self-identified gay men in an age range of 25-77. Forty-four percent of men older than 60 reported multiple partners, virtually equal to the number in the 30-39 age group (45 percent). Younger men were more likely to have participated in a wider range of sexual activities, including receptive anal intercourse, while fewer of the older men were in long-term relationships with other men. 3 Older women in particular appear to be uninformed about HIV transmission and risks. In an analysis of National Health Interview data, Diane Zablotsky of the University of North Carolina at Charlotte found that 47 percent of women older than 50 were totally uninformed about HIV, compared with only 14 percent of younger adults.4 An often-discussed high-risk scenario for women is one in which they are monogamous, but their husbands are not. Trends in the incidence of sexually transmitted diseases (STDs) may indicate growing risk for HIV among older Americans. Most STDs occur among individuals under 35, but the incidence of gonorrhea among individuals ages 45 and over increased 27 percent from 1995 to 1999. The increase was only 5 percent in the general population. In contrast to infections among younger Americans, most infections in individuals ages 45 and over are among men. 5 Jane Fowler, age 64, of Kansas City, contracted HIV in the mid-1980s. Motivated to warn other seniors about the risks of HIV, Fowler founded the National Association on HIV Over 50, which can be found on the Web at www.hivoverfifty.org. Fowler and Nathan Linsk, Ph.D., of the Chicago AIDS and Aging Project at the Midwest AIDS Education and Training Center (AETC), co-chair the organization's national steering committee. A video called ''It Can Happen To Me," produced by the American Association of Retired Persons, also educates people over 50 about their risk for HIV infection. Surveillance AIDS Prevalence More than 78,000 AIDS cases have been reported in the United States among individuals ages 50 and above. Estimates of the number living with AIDS are not available for individuals over 50, but 37,771 individuals over age 45 were living with AIDS at the end of 1999.1 These estimates do not include HIV infections that have not yet progressed to AIDS. Age of Diagnosis for Persons
The primary exposure category for HIV in older Americans who have been diagnosed with AIDS is men who have sex with men. But, heterosexual contact is a growing factor, as is injection drug use. Blood transfusion is a significant factor among this population, as many older Americans received transfusions prior to the screening of the blood supply, which began in 1985.1
HIV Incidence
AIDS Mortality
Care Challenges Dr. Linsk, who teaches at the Midwest AETC, points out that while symptoms of HIV may resemble other diseases associated with aging, all health care providers should know that symptoms like fatigue, shortness of breath, chronic pain, weight loss, and rashes are often associated with HIV disease.7 Some research indicates that as people age, they are at higher risk for progression to AIDS than are younger people. T-cell counts appear to fall to lower levels more rapidly in older infected persons. Among people with low T-cell counts, there is also greater risk of progression to AIDS among older people. 6 "A crucial issue regarding HIV infection in older adults is to distinguish among those conditions that are age related, those that are HIV related, those that are not distinguishable, and those related to both." 7 There has been little clinical research among people over 60. While theoretically admitted to clinical drug trials in the United States since 1993, certain criteria regarding renal or liver function can effectively exclude a disproportionate number of older people from participation.6 Other barriers include lack of information and fear of stigma associated with the loss of anonymity. Older as well as younger Americans with HIV face myriad psychosocial issues in dealing with their illness, including fear, changes in self-image, depression, isolation, disclosure, homophobia, and other forms of discrimination.6 As Jane Fowler of the National Association on HIV Over 50 told "USA Today" in October, "Older people with HIV suffer two stigmas. One is the stigma of living with a disease that is transmitted sexually or through drug abuse. The second is the stigma of being older." Fowler recounts the story of a high school student's response to a speech she gave: "We're all going to die sometime. You're old. What's the big deal?" "I'd like to live another two decades," Fowler said. "That's the big deal."
RESOURCE: For more information on the care and treatment of older Americans living with HIV disease see: "HIV Among Older Adults: Age-Specific Issues in Prevention and Treatment," by Nathan L. Linsk, Ph.D., available online at References 1.Centers for Disease Control and Prevention, HIV/AIDS Surveillance Report, 1999;11(No. 2). Case Management and HIV Disease What is typically referred to as the "health care system" often does not seem like a system at all. As one writer has said: "The HIV epidemic exists in a health care environment that resembles an organizational jungle."1 Individuals seeking care easily become lost in a complex maze of insurers, providers, and entitlements. Case management has evolved to help patients find their way through this disjointed arrangement so that the promise of health care and support services can be realized in their lives. Case management accounts for a significant portion of CARE Act spending, and has become the primary method of coordinating care for people with HIV disease. In addition to linking patients in care with the services they need, case management represents a solution to the problem of retaining people in care over time. HAB-funded evaluation studies in two cities confirm that patients receiving case management are more likely to stay in care—dramatically improving the possibility for a better life and a healthier future. What is case management? Case management is the principle service strategy used to develop the mix of social, medical, and psychological services needed to maintain the patient in the least restrictive environment and in the most cost-efficient manner.2 Some narrow definitions of case management concentrate almost exclusively on the cost containment function but, while important, it represents only a small part of the comprehensive case management commonly provided to those individuals living with HIV disease who need it. Providers tend to develop an approach to case management that reflects the needs of their clients, the requirements of their funding sources, and the characteristics of their local health care and social services environment. In most every case, comprehensive case management includes at least five components:
Case management improves client access to services while saving health care dollars by facilitating the use of community-based versus institutional care.4 These outcomes reflect The Robert Wood Johnson Foundation AIDS Health Services Program case management goals outlined almost 15 years ago: improvement in quality of patient care, enhancement of quality of life, and containment of costs. 5 However case management is defined, it is critical to many individuals living with HIV disease. It improves the health and well-being of the patient by providing greater access to medical, social, and psychological care.6 Without case management, many patients could not access public services, they would not have the support they need to fight for themselves, and they could not track their medical appointments and adhere to treatment regimens. Historical Context What we know today as case management has been provided in some fashion at least since 1970.7 In 1984, the New York State Health Planning Council implemented one of the first large scale care models in which case management played a central role. Concerned with facilitating hospital discharge of the elderly, the Council developed a system of continuous care with case managers available to patients before, during, and after hospitalization.8 This model was soon applied to HIV programs as it became obvious that achieving optimal quality of care for people with HIV disease requires mobilization and utilization of a broad range of systems.
The case management approach to HIV care that emerged included expanded social supports. Case managers would help clients address needs related to housing, social services, legal assistance, job counseling, and income maintenance. Case management would assume greater responsibility for establishing comprehensive community systems to assist people with HIV, particularly as their disease shifted from an acute to a chronic syndrome.9 These values are reflected in what is perhaps the best known formal approach to case management for people living with HIV disease, the "San Francisco model." The San Francisco model emerged by the mid-1980s. In conjunction with data showing that inpatient lengths of stay were shorter in San Francisco than in New York,10 the San Francisco model was used to argue that community-based care was preferable to more institutionally-based systems, both in terms of cost savings and of satisfying patient preferences to remain in the community.11 Case Management and the CARE Act In 1990, the new CARE Act reflected the importance of case management to people living with HIV disease. The reauthorized CARE Act underscores these same principles. "In the first year of funding under Title I of the Act (1991), $9.6 million was allocated to case management by the 16 EMAs. This was 13 percent of total funding."12 Almost 18 percent of CARE Act Title I dollars were allocated to case management in 1993 and 1994.13 For FY 2000, case management allocations totaled $60.8 million among Title I grantees and $35.5 million among those for Title II, representing 11.5 percent and 4.7 percent, respectively, of their total appropriations. That the concept of case management is fluid is reflected in the diverse approaches to case management represented in each of the CARE Act components. When common service definitions across all programs, but differences in case management from one jurisdiction to another will persist because local needs differ, sometimes dramatically. Grantees and planning bodies have developed unique standards that strongly influence how case management is provided and what components it comprises. For example, some EMAs now have developed a case management subcategory called "case management- adherence." The HIV Case Manager In this age of gatekeepers, the case manager is the opposite—a gate opener to health care and support services, health insurance, and entitlements. Increasingly, the case manager plays a key role in supporting adherence. In this age of gatekeepers, the case manager is the opposite—a gate opener to health care and support services, health insurance, and entitlements. HIV infection emerged in the United States among men who have sex with men—people who, if not estranged from health care, often felt uncomfortable talking to their provider about their sexual practices and who were ostracized from society and many of its institutions. More recently, HIV infection has increased among individuals for whom estrangement from health care is a common problem, if not because of sexual practice, because of addiction and other mental illnesses, income, or race. As a result, many providers report that a growing need for case management—and other support services—has materialized, even in the age of HAART, decreased mortality, and decreased AIDS morbidity. Accessing the services needed by individuals living with HIV disease in a timely manner requires familiarity with the local environment—providers, community-based programs, entitlements, faith-based services, and more. The case manager is critical to developing and implementing a coherent service plan and to leading the patient through the Byzantine complexities of the service system. The end result is improved access to services, better quality of care, heightened quality of life, and reduced costs of care for people with HIV infection. Case managers provide their services in a variety of settings. Some are affiliated with primary care providers, others represent agencies that provide support services or perhaps only case management. Some case managers are social workers, others are nurses, clergy, psychologists, counselors, or physicians, so educational backgrounds clearly vary. Some case managers are paid employees while others are volunteers.14 Regardless of their differences, generally, case managers agree that the core of their job is to link their clients with financial, social, and medical services.15 References 1.Nacman, M. Case management training manual, New York State Department of Health, AIDS Institute, Albany, NY, 1990. 2.Benjamin, in Gant, L. Evaluation of HIV Case Management Services: An Overview, Evaluating HIV Case Management, Invited Research & Evaluation Projects, Health Resources and Services Administration, HIV/AIDS Bureau, Rockville, MD. 1998. 3.Cozen, M. Developing Standards of Practice for HIV Case Management: San Francisco's Model, Evaluating HIV Case Management, Invited Research & Evaluation Projects, Health Resources and Services Administration, HIV/AIDS Bureau, Rockville, MD. 1998. 4.Mor et al. in Lehrman, S.E. et al. Evaluating the Impact of HIV Case Management: Research Issues and Limitations, Evaluating HIV Case Management, Invited Research & Evaluation Projects, Health Resources and Services Administration, HIV/AIDS Bureau, Rockville, MD. 1998. 5.Larkin, et al. in Amsel, J. et al. A Review of Systematic Data Analysis Toward the Effectiveness of HIV Case Management, Evaluating HIV Case Management, Invited Research & Evaluation Projects, Health Resources and Services Administration, HIV/AIDS Bureau, Rockville, MD. 1998. 6.Gant, L. Evaluation of HIV Case Management Services: An Overview, Evaluating HIV Case Management, Invited Research & Evaluation Projects, Health Resources and Services Administration, HIV/AIDS Bureau, Rockville, MD. 1998. 7.Cozen, M. Developing Standards of Practice for HIV Case Management: San Francisco's Model, Evaluating HIV Case Management, Invited Research & Evaluation Projects, Health Resources and Services Administration, HIV/AIDS Bureau, Rockville, MD. 1998. 8.Baker and McCormack in: Lehrman, S.E. et al. Evaluating the Impact of HIV Case Management: Research Issues and Limitations, Evaluating HIV Case Management, Invited Research & Evaluation Projects, Health Resources and Services Administration, HIV/AIDS Bureau, Rockville, MD. 1998. 9.Vladek in: Lehrman, S.E. et al. Evaluating the Impact of HIV Case Management: Research Issues and Limitations, Evaluating HIV Case Management, Invited Research & Evaluation Projects, Health Resources and Services Administration, HIV/AIDS Bureau, Rockville, MD. 1998. 10.Arno, P. et al. Local policy responses to the AIDS epidemic: New York and San Francisco. New York State Journal of Medicine 87: 264-271, 1987. 11.Fleishman, J. Research Design Issues in Evaluating the Outcomes of Case Management for Persons with HIV, Evaluating HIV Case Management, Invited Research & Evaluation Projects, Health Resources and Services Administration, HIV/AIDS Bureau, Rockville, MD. 1998. 12.Bowen et al. in: Fleishman, J. Research Design Issues in Evaluating the Outcomes of Case Management for Persons with HIV, Evaluating HIV Case Management, Invited Research & Evaluation Projects, Health Resources and Services Administration, HIV/AIDS Bureau, Rockville, MD. 1998. A Case Management´s Day: A Case Study The Philadelphia EMA funds case management in 23 agencies throughout its five Pennsylvania and four Southern New Jersey counties. We recently spent a day with case managers in two of these agencies: ActionAIDS, a 15-year-old AIDS service organization, and the clinic-based Partnership Comprehensive Care Practice, affiliated with MCP Hahnemann University. Both receive CARE Act funds. "Our current case management model is a holistic, generalist model, which includes medical, psychosocial, client advocacy, and benefits counseling," says Evelen Torres, Case Management Project Coordinator for the Philadelphia Department of Public Health. "We use a system in which what the case management client receives is based on their level of need: basic, intermediate, or intensive." Case management has changed in response to antiretroviral therapies, says Torres. "We're changing from a system where people came in and got supportive services until they died, to a system that's based on level of need. It's a philosophy with the goals of getting people into primary care and reducing barriers to supportive services, ultimately improving their quality of life." Case Management in an AIDS Service Organization Amanda Latshaw, case manager with ActionAIDS, recently graduated from the social work masters program at the University of Pennsylvania. She completed an internship at ActionAIDS during her program, and came back to the organization as a case manager once her degree work was complete. On this Tuesday morning, one of Latshaw's clients, Joseph, has been hospitalized. He has consistently low T-cell, red and white blood cell counts, and has developed an abscess, chills, and fever. He is about 50-years-old, chronically homeless, and has a history of alcohol and drug abuse. At about 10:15 a.m., Latshaw sets out to visit Joseph at Pennsylvania Hospital, where he has been hospitalized before. The hospital is a brief walk from the Action AIDS office. Latshaw finds the room number Joseph gave her and checks in at the nurses' station. She had spoken with a nurse named Jackie by phone earlier in the day, who reported that Joseph was in a reverse isolation room, so Latshaw would need to don scrubs, gloves, and a mask before entering. Latshaw never makes it that far. The nurses don't have a patient by this name; they check their computerized roster, and make a call to the admissions office. Latshaw has a phone number for Joseph, calls him, and discovers that he is, in fact, at St. Joseph's Hospital in North Philadelphia, where he had been admitted on Sunday night. Joseph had requested a transfer to Pennsylvania Hospital a day earlier—he is familiar and comfortable with the hospital and its doctors. But when he spoke with Latshaw earlier this day, apparently in a disoriented state, he thought he had already been transferred. "Our current case management model is a holistic, generalist model, which includes medical, psychosocial, client advocacy, and benefits counseling." Latshaw sets out for St. Joseph's. On the phone, Joseph told her that the hospital was not allowing him to see a social worker because he was displaying aggressive behavior. Latshaw knows his history of acting out, but believes that after years of living on the streets, Joseph is on the verge of making major changes in his life, which means drug and alcohol rehab and finding a home. After reaching St. Joseph's by subway, Latshaw locates Joseph and the events of the last few days begin to take shape: Joseph had sought a night's sleep in a local shelter on Sunday evening, where a physician determined that he was in medical distress and needed to be hospitalized. More importantly, Joseph expresses to Latshaw a desire to check into a rehab hospital in Valley Forge, outside of Philadelphia, where he has been a patient before. He has apparently discussed this with the hospital's social worker. Once she has checked in with Joseph, Latshaw heads out to the nurses' station to speak to Jackie, and to track down the social worker, Loretta. When she returns to Joseph's room, she is armed with information: first, he will be seen by a staff doctor who is an HIV/AIDS specialist (Latshaw knows the doctor by name and reputation, and is pleased that she will see him). Second, the social worker has already spoken to the hospital's utilization staff person, who will attempt to get Joseph checked into Valley Forge. But the hurdle is significant: she must convince the local behavioral health "gatekeeper" to approve reimbursement for the rehab stay. And, given Joseph's unsuccessful history in rehab, this won't be easy. Third, Latshaw put in a call to hospital maintenance about the cold room (they said the problem had already been reported). The complete reason for Joseph's admission to the hospital, however, still isn't totally clear; Latshaw had a cursory look at his chart at the nurses' station, and suspects the doctor was alarmed by his liver functions, which are often abnormal. Joseph is grateful to Latshaw for getting some answers. He talks about his desire to be clean and sober. In order to successfully complete rehab, he says he'll need to leave the Philadelphia area once he's out. During his last stay at Valley Forge, Joseph had heard about a transitional housing program in Arizona that would be available to him, and he expresses a desire to get there this time. He says that all of his associations in Philadelphia—people and places—are negative and destructive, and he needs a clean break. Joseph's struggle with HIV in tandem with other problems is not unusual among her clients, Latshaw says. Virtually all of her clients deal with other issues; drug and alcohol addiction are the most common and some suffer from mental illness. Many suffer from both, she says. The Clinical Case Management Model Karen Coleman was recently promoted to Director of Case Management Services at the Partnership Comprehensive Care Practice, an HIV/AIDS clinic affiliated with MCP Hahnemann University. She oversees four case managers, and still maintains a small caseload herself. A case manager assistant works almost exclusively with uninsured patients, helping them navigate the labyrinth of entitlements and services. Pennsylvania is a Medicaid managed care State, and Medicaid is the insurer of the majority of the clinic's 1,100 patients. Coleman says the demand for services outstrips what the clinic can supply. Coleman says that because of the clinic's hospital affiliation, there is continuity of care for her clients, as doctors can follow ambulatory patients into the hospital, if necessary. In the Partnership clinic, clients schedule case management and medical appointments concurrently. Many of the day's patients were seen in the morning, but Coleman has a substantial amount of paperwork on her desk to contend with: she is helping one client, for example, apply to an agency that provides home heating oil. Another client is experiencing more serious problems. He is in a psychiatric hospital, ready to be discharged, but there is no shelter setting to which he can go. He is a client with drug abuse problems and had been to the clinic the previous week, experiencing suicidal feelings. He saw a therapist on staff, but because he was not able to agree to a safety plan and to not harming himself, the therapist recommended hospitalization. Coleman then took over, trying to find him a hospital bed. Hahnemann Hospital, the logical first choice, had no male beds available, so she had to get approval from the local behavioral health agency (the "gatekeeper" for all Philadelphia case managers) in order to get a hospital stay. This client had already been a frequent user of psychiatric and drug/alcohol services, so only a 2-day stay was approved. Now, the hospital social worker has contacted Coleman: she hasn't been able to get Joseph a referral to a shelter, and he has no place to go. Coleman spoke to him earlier in the day by phone, and "contracted" with him to ensure his safety: he would phone her, and he would come for an appointment to the clinic. It is now mid-afternoon, and Coleman has not heard from him; she is concerned for his safety, and concerned that he will start using drugs again. Like many case managers, Coleman spends a great deal of time on the telephone, and this day is no exception. When the phone rings again, it is Angela, a client Coleman has worked with for 5 years. HAB Releases "Reducing Barriers to Care" Policy Brief The HIV/AIDS Bureau has published "Reducing Barriers to Care," the fourth policy brief in the "Directions in HIV Service Delivery and Care" series. This new publication addresses three topics of importance for Ryan White CARE Act-funded programs:
All of the publications in the policy brief series are available on the HIV/AIDS Bureau web site at: http://hab.hrsa.gov publications, or through HRSA's Information Center at 1-888-ASK-HRSA. Department of Health and Human Services Issues Regulations The U.S. Department of Health and Human Services (DHHS) recently issued two sets of regulations, one establishing national standards to protect patients' medical records, and the other governing how States implement their Medicaid managed care programs. Privacy Regulations In December 2000, DHHS issued regulations that will protect medical records and other personal health information maintained by health care providers, hospitals, health plans and health insurers, and health care clearinghouses. The regulations provide protection of paper, oral, and electronic information. They also require that most providers get patients' consent for routine as well as for non-routine use and disclosure of health records. The regulations will be enforced by DHHS' Office for Civil Rights. A copy of the regulation is available on their web site at http://www.hhs.gov/ocr/hipaa.html. Medicaid Managed Care Regulations New Medicaid Managed Care regulations give States greater flexibility by allowing them to amend their State plan to require certain categories of Medicaid beneficiaries to enroll in managed care without obtaining waivers. They also establish new beneficiary protections in areas such as quality assurance, grievance rights, and coverage of emergency services. Changes in enrollment composition and beneficiary protections in prepaid health plans (PHPs) are also included. These regulations are effective April 19, 2001. At the time of publication, there was a Presidential Order to temporarily postpone the effective date of the regulations for 60 days. This Federal Register document is available through the U.S. Government Printing Office (GPO) web site at Medicaid Waivers and HIV/AIDS Care Massachusetts is the second State after Maine to receive approval for a waiver regarding HIV-positive individuals' eligibility for Medicaid. Individuals with HIV disease who have not been diagnosed with AIDS and have an income at or below 200 percent of the Federal Poverty Level (FPL) are eligible for the full range of Medicaid benefits, including highly active antiretroviral therapy (HAART). The District of Columbia's waiver application to enhance Medicaid access for low-income HIV-positive individuals was also approved. HIV-positive individuals whose income is up to 100 percent of the FPL would receive more effective, early treatment of HIV disease. Similar to the State of Maine, D.C. will establish an "enrollment cap" that will range from approximately 200 to 400 individuals.
Please forward comments,letters and questions to: HRSA Care ACTION Phone: 301-443-6652
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