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Current trends and the future of HIV/AIDS services: a social work perspective.

Due in large part to grassroots efforts begun in the early 1980s, the U.S. government has responded to HIV/AIDS through regulations, laws, and policies that have resulted in domestic and global health and social programs. Social workers have worked on both the frontline and the policy level since the early days of HIV/AIDS (Aronstein & Thompson, 1998). During the ensuing decades of the pandemic, the social work profession has responded to changes in the epidemiology, treatment, and funding of HIV/AIDS research. Current economic concerns and health trends find HIV/ AIDS no longer on the radar screen of concerns, replaced by personal and national economic concerns such as terrorism and homeland security. Yet the necessary and ongoing response to HIV/AIDS continues to require a diverse range of social work practice skills

THE CURRENT PICTURE OF HIV/AIDS IN THE UNITED STATES

As of 2001, it was estimated that 850,000 to 950,000 people were living with HIV/AIDS; 890,000 are between ages 15 and 49. Approximately 362,000 of these people were living with AIDS (the advanced stage of HIV). This represents a 14 percent increase in the number of people living with AIDS since 1999 (Centers for Disease Control and Prevention [CDC], 2003a).

During the past two decades, the demographics of HIV/AIDS has changed, moving from an illness that (primarily) affected white gay men to a disease that increasingly affects women, Latinos, men of color who have sex with men, and older adults.

Communities of Color

AIDS prevalence rates among African American men and women increased by 150 percent between 1993 and 2001 compared with a 68 percent rate increase among white people (Kaiser Family Foundation [KFF], 2003a). Rates of HIV/ AIDS among communities of color were significantly higher than those for white people when considering their percentage of the total population (for example, African Americans make up 12 percent of the U.S. population, yet account for 76.3 percent of individuals with AIDS) (KFF, 2003a) (see Figure 1). African American teenagers (ages 13 to 19) make up only 15 percent of U.S. teenagers, but account for almost two-thirds (61 percent) of new AIDS cases reported among teenagers in 2001 (KFF, 2003a).

Women

Overall, women represent an increasing proportion of new AIDS cases, but African American women represent a greater number of AIDS cases than white women. There were 7,113 newly reported AIDS cases among African American women in 2001 compared with 1,981 among white women (KFF, 2003b). The majority of women in all groups are most likely to have been infected by heterosexual contact (67 percent African American, 59 percent white) than through injection drug use (30 percent African American, 38 percent white). Heterosexual contact accounts for 75 percent of HIV infection among women ages 13 to 24 (KFF, 2003b).

Latina women are also overrepresented among women infected with HIV. Although Latina women make up only 13 percent of the U.S. female population, they account for 18 percent of the new HIV infections among women. Similarly, African American women make up 12 percent of the U.S. female population but account for 64 percent of new HIV infections among women (KFF, 2003b).

Adolescent girls (ages 13 to 19) accounted for more than one-half (57 percent) of new HIV infections in 2001 that occurred in this age group. Two-thirds of AIDS diagnoses among women since the epidemic's start were among ages 30 to 49, one-fifth (21 percent) were diagnosed in their 20s, and about one in 10 women was diagnosed with AIDS at age 50 or older (KFF, 2003b).

Older Adults

According to CDC estimates, in 2002, 42,104 people ages 55 and older were living with AIDS, including 8,902 people 65 and older (CDC, 2003b). In contrast, the figure for people 24 and younger was 8,677 (CDC, 2003b). In addition, people over age 50 living with HIV/AIDS are more likely to experience cognitive impairments (University of California, San Francisco [USCF], Center for AIDS Prevention Studies, 1997). Among older adults, the risk is particularly high for gay men who abuse drugs or engage in "anonymous sexual encounters" and for women over age 60, who, due to "normal" bodily changes, face "higher risk for HIV infection during intercourse" (USCF). Despite this, little attention has been paid to preventing HIV and AIDS in older adults (UCSF). Many older adults do not understand the need to use condoms or take other precautions when engaging in sexual behavior, and many physicians fail to discuss the related risk factors of HIV/MDS or provide the information necessary to help older adults protect themselves against infection (Laurence & Luciano, 2000). This reflects the general perception that the older adult population is not at risk of HIV and society's reluctance to discuss at-risk behaviors (Tomaszewski, 2003). For these and other reasons, older adults have been called a "hidden HIV risk group" (American Foundation for AIDS Research, 2002).

GEOGRAPHIC TRENDS

HIV/AIDS has had a disproportionate impact on the south, traditionally the poorest region of the country. Although rates of infection in other regions of the United States are decreasing or stabilizing, in the south the number of HIV/ AIDS cases is increasing. Incidence rates increased by 9 percent in the south and by 2 percent in the midwest between 2000 and 2001; incidence rates have decreased in the west (down 4 percent) and northeast (down 8 percent) (KFF, 2002). Poor women in particular are vulnerable, perhaps even more so in the southern United States. "AIDS case rates among women are the highest in the northeast and south, seven of the 10 states with the highest rates among women are in the south" (KFF, 2003b, p. 1).

When considering all sexually transmitted infections (increasing risk of HIV infection), the south also consistently reports higher rates of chlamydia, gonorrhea, and syphilis compared with the rest of the United States (KFF, 2002). Contributing to these rates are disparities in health services, limited access to health services, poverty, and stigma associated with these infections.

PUBLIC FUNDING AND POLICY IMPLICATIONS OF HIV/AIDS PROGRAMS

Federal funding for HIV/AIDS prevention, intervention, care services, and research is seemingly a "patchwork" of policies that are part of other administrative, policy, regulatory, and legislative decisions. These policy directives are shaped by science, congressional directives, pressure from constituents and organizations, professional judgments, and personal values (Harvey, 2002).

In his proposed fiscal year (FY) 2005 federal budget request to Congress, President Bush included an estimated $19.8 billion for U.S. and global HIV/AIDS funding. This figure represents less than 1 percent of the entire federal budget and an increase of 7 percent over FY2004 funding (KFF, 2004b). However, it is much less than many advocacy groups believe is needed. Approximately 51 percent of the request is for care, which translates to $10.1 billion to be distributed to Medicaid, Medicare, Social Security Disability Insurance (SSDI), and Supplemental Security Income. The remaining 49 percent ($9.7 billion) is considered discretionary--Congress determines funding limits for these (the global portion received the largest increase of the request; the domestic fund requests were either level or had small increases). The largest portion of discretionary funding is for the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act (P.L. 101-381), of which the largest increase request is for the AIDS Drug Assistance Program (ADAP). Generally, these discretionary funds cover cash and housing assistance, prevention, and research (KFF, 2004b).

Ryan White CARE Act

The Ryan White CARE Act of 1990 provides funding to cities, states, and other public or private nonprofit entities to develop, organize, coordinate, and operate systems for the delivery of health care and support services to medically underserved individuals and families affected by HIV. This is funding of last resort--when funds are not available through other means. The CARE Act was reauthorized in both 1996 and 2000 and is slated for reauthorization in 2004 (KFF, 2004b). It provides substantial resources to community organizations and other providers of outpatient health care and support services; the funds can be used for many HIV-related services that are not covered by another payer. For example, funds can be used for nonmedical services, to train providers to address challenges of daily living such as transportation, housing, home and hospice care, and child care (Winiarski, 1997).

AIDS Drug Assistance Program

Funded through the Title II of the CARE Act, the AIDS Drug Assistance Programs provide HIV/ AIDS medications to low-income HIV-positive individuals who have limited or no coverage from private insurance or Medicaid, in all 50 states, the District of Columbia, Puerto Rico, the Virgin Islands, the Northern Mariana Islands, the Marshall Islands, and Guam. ADAP provides a formula for grants to states and other eligible areas to improve the quality, availability, and organization of HIV health care and support services (Health Resource and Services Administration, 2003).

Originally funded to help states provide AZT (the first, and at that time only, medication approved for HIV/AIDS treatment), the funding needs have expanded as the number of HIV/ AIDS medications has increased. Each state determines eligibility for its ADAP program--financial and clinical criteria and formularies (which medications are to be available under the program). HIV/AIDS therapy ranges in cost from about $10,000 to $15,000 per year per person for outpatient medications (Project Inform, 2004).

Thus, funding levels determine the number of clients ADAPs can serve and the amount and cost of medications to be provided. A state's economic health directly affects the ability or decision to provide access to ADAP medications, resulting in many states leaving medically vulnerable adults and children on waiting lists or limiting access to the range of medically proven antiretroviral drugs. Table 1 shows the implications of limited or no funding on ADAPs nationwide (National Alliance of State and Territorial AIDS Directors [NASTAD], 2004).

A majority of ADAP clients across the United States are people of color, most are uninsured, only 10 percent qualify for Medicaid and only 6 percent for Medicare, and 13 percent have some amount of private insurance coverage (KFF, 2004a). Almost all ADAP programs cover Food and Drug Administration (FDA)--approved medications in the antiretroviral category; however, because of budgetary limitations, South Dakota does not cover protease inhibitors and not all states cover medications for preventing and treating opportunistic infections. Some state ADAPs may cover more than 100 medications, whereas others cover 20 (Project Inform, 2004).

Medicaid

Adults with HIV/AIDS generally qualify for Medicaid benefits if they are disabled, have low income, and have limited assets (Project Inform, 2004). However, Medicaid, even when an individual qualifies, may not cover all needs. The benefits include hospital care, doctor visits, laboratory tests, nursing care facilities, and home health care. But the amount of coverage for these services varies by state. Optional services that may be provided under Medicaid by individual states include prescription medications (including FDA-approved HIV drugs available in all states, but with restrictions on dollar amounts and number of medications or prior approval for prescriptions). Some programs require cost sharing from clients, and these may increase with budget restrictions on state programs. Not all doctors accept Medicaid, because it generally does not pay "going rates" for services.

Medicare

Medicare has become an increasingly important source of support for individuals with HIV/ AIDS. In 2002 Medicare accounted for 14 percent of all federal spending on HIV/AIDS. Although most Medicare recipients are age 65 or over, recipients of SSDI are also eligible for Medicare. To receive SSDI an individual must be completely disabled and have been in the workforce. Recipients must wait five months after disability determination to receive benefits, and once on SSDI must wait two years before receiving Medicare benefits. Some individuals in the lowest income brackets have qualified for "dual eligibility" under both Medicare and Medicaid. Approximately 7 million Medicare beneficiaries with very low incomes also qualify for coverage through Medicaid (KFF, 2004c). According to Ryan and Super (2003), individuals with dual eligibility make up only 16.6 percent of Medicaid recipients but account for almost half of all Medicaid prescription drug expenditures. Dual eligibility has enabled these individuals to obtain "the full range of drugs that they need with little or no co-payment" (KFF, 2004c, p. 1).

However, under the Medicare Prescription Drug, Improvement, and Modernization Act of 2003 (P.L.108-173), beginning in 2006, dual eligibility will come to an end. Although individuals with low incomes will be eligible for subsidies, many will still be required to make co-payments for prescription drugs (KFF, 2004c). In addition, these individuals will have to choose from among a wide range of stand-alone drug plans and Medicare Advantage plans (KFF, 2004c). These plans will also have "broad flexibility" (KFF, 2004c) in the type and range of medications they offer and the right to "limit to two the number of drugs that they cover in any therapeutic class" (KFF, 2004c, p. 2). Although individuals will have the right to appeal plan decisions, it remains unclear whether this process will provide adequate protection.

These changes have raised concern in the HIV/AIDS consumer and provider communities. People living with HIV/AIDS often must switch drug regimens to diminish disease progression (the virus continually mutates); plan formularies may not include all medications recommended (and may be even more limited by high costs). As funds diminish or remain stagnant for the CARE Act, ADAP, and Medicaid programs, fewer drugs will be on formularies, fewer patients will be eligible for benefits, and benefits probably will be available for a shorter time during a person's life (Johnson, 2003).

PREVENTION POLICIES

In April 2003 the CDC announced an ambitious HIV/AIDS initiative to prevent new HIV infections and to identify HIV-positive people who may not be aware of their infection. The four strategies of the initiative consist of (1) making HIV testing a routine part of medical care, (2) implementing new models for diagnosing HIV infections outside medical settings (including the use of rapid HIV tests), (3) reducing perinatal transmission, and (4) preventing new infections by working with people who are HIV-positive and their partners. Historically, funding of CDC has been inadequate. The relatively new initiative has raised concerns in the provider community that the CDC's funding level is inadequate to fund the new initiatives and programs that have proven to serve people living with or affected by HIV/AIDS (NASW, 2003).

This move is believed to jeopardize approximately $90 million in annual federal funds for community groups (Project Inform, 2004). The CDC has said that the current emphasis on community outreach prevention programs has proven ineffective, citing annual increases in the number of new HIV cases nationwide (KFF, 2003c). The national reporting system moved slowly to report both HIV and AIDS incidence rates, with January 2004 marking the time the last state starting reporting HW infections (Altman, 2004). There is concern that organizations will or have had to scale back or cut other effective programs to meet the CDC's new goals; the new initiative thus coming at the expense of existing risk-reduction prevention efforts for those whose serostatus is negative or unknown (personal communication from the National Organization Responding to AIDS to Dr. R. Janssen, director, Division of HIV/AIDS Prevention, CDC, Washington, DC, 2003). A related policy change that affects prevention and early intervention services is the proposed doubling of funding for abstinence programs, increasing funding from $90 million annually to more than $270 million in 2005 (The Body, 2004). The implication for practice is the concern that denying youths and adults critical information (for example content on contraception and prevention) places the health and lives of people at risk of HIV/AIDS and other sexually transmitted infections.

HEALTH CARE DISPARITIES

As people live longer there is more stress on multiple health, economic, and social systems in the United States. More people with HIV/AIDS are living and working in the United States, which presents concerns about health care provision, disability issues, and private health insurance for employees, employers, the general population, and the government.

Globally and domestically the impact of HIV/ AIDS is being felt across the workforce and throughout communities. For example, in Africa, nearly 1 million African students are deprived of a teacher annually because of the impact of HIV/AIDS (Hansen, 2003). Where there is poverty, health risks increase--whether it be poor water supplies, inadequate food and shelter, or increased drug use and sex trade. Communicable diseases--hepatitis, tuberculosis, sexually transmitted infections, and HIV/ AIDS--have increased worldwide. As labor forces decline, health needs and health disparities increase.

Recent studies show disparities in access and treatment. For example, African Americans and Latinos were more likely than white Americans to be tested for the first time at later stages of infection--that is, they were more often diagnosed with AIDS at their first HIV test or within one year of the first test. Treatment options are more limited at this stage, and life expectancy is generally shorter (KFF, 2003a, CDC, 2003a)

Disparities in access to health care exist for uninsured people in the United States. People of color are more likely than white people to be uninsured and depend on Medicaid and other publicly funded health care programs. "African Americans are the most significantly affected racial/ethnic group in the U.S., as reflected in incidence, prevalence, and mortality trends over time" (KFF, 2004a, p. 2). As a group, women have limited access to health care. Nearly two-thirds (64 percent) of women compared with 41 percent of men living with HIV/AIDS have annual incomes below $10,000 (KFF, 2004a).

Juxtaposed to these disparities is the increased access to highly active antiretroviral treatment for some segments of the population, be it due to ADAP or limits of private insurance or personal resources to obtain medications. The chronic disease aspects of HIV/AIDS challenge our nation's health, economic, and social systems to respond. Under the new Medicare prescription drug program, dual eligibility will end. People who are on both Medicare and Medicaid will be denied prescription coverage under Medicaid (Centers for Medicare & Medicaid Services, 2004; Project Inform, 2004). It is unlikely this population will be able to afford private insurance coverage and will be placed under the standard Medicare benefit of the theoretical $3,600 yearly limit in 2006 under the new Medicare plan. (Several recent reports claim the figures in the new law severely underestimate the actual costs to Medicare recipients). In addition, only medications on the formularies will count toward an individual's deductible costs or be covered by insurance after deductibles are met.

What about the Ryan White CARE Act and ADAP? "Looking forward, it is expected that ADAPs will increasingly feel the effects of the economic downturn and state budget crises. Indeed, ADAPs operate within a dynamic environment, and are subject to changes in federal and state political and fiscal priorities and to changes in HIV-related treatment and technology" (KFF, 2003d, p. 2). People are becoming more gravely ill or are dying while on waiting lists or because of the inability to get medications no longer available in the formularies because of budget limitations. ADAPs in Alabama, California, Montana, New Hampshire, New Mexico, Oklahoma, South Carolina, and Texas expect to have new or additional restrictions in FY2004 (NASTAD, 2004).

IMPLICATIONS FOR THE FUTURE: SOCIAL WORK PRACTICE ISSUES

Our profession will continue to be challenged by the changing demographic, political, and organizational context of HIV/AIDS interventions, with practice issues also affected by stigma and discrimination, issues of access and care, and the allocation of scarce resources (Giddens, Ka'opua, & Tomaszewski, 2000). Yet, through our diverse practice skills as clinicians, educators, and advocates, social workers daily have the opportunity to provide awareness and prevention information to our clients. In addition, mental health care continues to play an important role in the spectrum of care for individuals living with HIV/AIDS (O'Connor, 2003). Therefore, it is critical that we stay current about HIV disease progression and medication options; the role of adherence; and the connection of substance abuse histories and mental health status with a client's risk of HIV/AIDS.

Local, state, and federal HIV/AIDS policies and regulations, the historical underfunding of HIV/AIDS programs, the lack of mental health coverage in HIV/AIDS policies, and limited access to care that promotes health care disparities--all find HIV/AIDS as the quintessential social work practice issue. Dally, social workers continue our critical role in helping clients gain access to services, apply for financial and care assistance, and understand service guidelines. There is great competition for limited funds in the current economy. The fiscal challenges presented by policies such as abstinence only initiatives, the focus on medical services at the possible expense of overall health and mental health services, the continued lack of access to all forms of health care or basic medical services, and related health care disparities make the future increasingly challenging to social workers and allied health care professionals working to ensure clients' right to access to care and treatment.

With multiple professional demands and compelling yet often competing social and political pressures, it is difficult to stay current on funding and policy issues. Yet, two decades into this public health pandemic, there is new urgency to stay informed; to understand the implication of policy; to analyze funding priorities and formulas and their impact on services provision and reimbursable services; and to remain focused on our roles as advocates, educators, and clinicians to advocate for clients and the larger communities in which we practice. As tension in deciding among critical social welfare needs escalates, we, as a profession and as individuals, must be at the table to determine priorities and identify strategies to meet them.

Clearly, social workers have been and continue to be among the leaders in planning, advocacy, and translating knowledge of HIV/AIDS and the myriad of related social welfare needs into practice solutions. Staying current allows us to advocate for our clients, provide feedback and guidance to elected and appointed officials, and professionally negotiate the systems in which we practice. Being technologically adept enhances our ability to acquire knowledge, develop strategies, and improve health and related services accessibility for our clients.
Table 1. ADAPs with Waiting Lists or Access Restrictions
as of January 2004

State Restrictions

Alabama capped enrollment, 247 on waiting list
Alaska capped enrollment, 4 on waiting list
Arkansas capped enrollment
Colorado capped enrollment and reduced formulary, 190 on
 waiting list
Idaho capped enrollment, monthly expenditure cap, 3 on
 wait list
Indiana capped enrollment
Kentucky capped enrollment, 140 on waiting list
Montana capped enrollment, 4 on waiting list
North Carolina capped enrollment, 126 on waiting list
Oklahoma reduced formulary, annual expenditure cap,
 38 individuals have reached their expenditure cap
Oregon reduced formulary, lowered financial eligibility,
 imposed cost sharing
South Dakota capped enrollment, 49 on waiting list
Washington lowered financial eligibility criteria, reduced
 formulary imposed cost sharing
West Virginia capped enrollment, 28 on waiting list
Wyoming reduced formulary, lowered financial eligibility

NOTE: ADAPs = AIDS Drug Assistance Programs.

Figure 1. AIDS Case Rates per 100,000 Population, by Race/Ethnicity,
2001

 Rate per 100,000

African
American 76.3

White 7.9

Latino 28.0

Asian/
Pacific
Islander 4.8

American
Indian/
Alaska Native 11.7

NOTE: Includes reported cases among those 13 years of age and older.
White, African American, Asian/Pacific Islander, and American
Indian/Alaska Native groups do not include those of Latino origin.

SOURCE: CDC, HIV/AIDS Surveillance Report, Year End Edition 2001,
Vol. 13, No. 2.


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Kaiser Family Foundation. (2003c, September 29). California HIV/AIDS prevention programs to focus on training HIV-positive people to prevent spreading virus. Kaiser Network Daily HIV/AIDS Report. Retrieved February 10, 2004, from http:// www.kaisernetwork.org/daily_reports/rep_index. cfm?hint=1&DR_ID=2075

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Laura E. Kaplan, PhD, LISW, is assistant professor, Department of Social Work, College of Social and Behavioral Sciences, University of Northern Iowa, 38 Sabin Hall, Cedar Falls, IA 50614-0405; e-mail: laura.kaplan@uni.edu. Evelyn Tomaszewski, MSW, is senior policy associate and project director, NASW HIV/AIDS Spectrum Project, National Association of Social Workers, Washington, DC. Stephen Gorin, PhD, is professor, Social Work Department, Plymouth State College, Plymouth, NH. In memory of Arthur F. Tomaszewski II and for all those affected by the pandemic.
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Author:Kaplan, Laura E.; Tomaszewski, Evelyn; Gorin, Stephen
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Date:May 1, 2004
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