Over the past several decades, education, medical advances, and public health efforts have tempered the public image of HIV/A

Human Rights Update

When the epidemic emerged in 1981, AIDS was perceived as a deadly disease that was transmissible from person to person, as well as closely associated with historically disenfranchised groups and culturally and historically taboo issues such as sexual orientation, drug use, and commercial sex work. The combination of these factors led to societal hostility as well as slow response by state, federal, and country governments. Although both knowledge of HIV/AIDS and government responses have increased, the stigma still persists more than 30 years later.

Stigma and discrimination are universally experienced by persons living with and affected by HIV/AIDS. Most notably, the incidence of HIV infection has steadily increased in communities of color, resource poor populations, and among men who have sex with men, all whom are already subject to prejudice and discrimination (IFSW 2006; CDC, 2011). Stigma is perceived as a major limiting factor in primary and secondary HIV/AIDS prevention and care, and has interfered with voluntary testing and counseling, and access to care and treatments. (Holzemer & Uys, 2004). All things considered, AIDS stigma becomes yet another life obstacle in the path of many of the very people who are already faced with social and economic obstacles. Combating stigma remains an important task for social workers around the globe.

Stigma is experienced at the individual and societal level

HIV/AIDS doesn’t discriminate; people do. AIDS stigma can be experienced at both the individual and societal level.

At the individual level, AIDS stigma takes the form of behaviors, thoughts, and feelings that express prejudice against people living with HIV or AIDS, and can also be experienced by persons perceived to be living with HIV/AIDS. Concerns about stigma affect an individual’s decision to get tested, access health care, and withhold information about their status from family members, friends, and care providers. Social isolation negatively affects the lives of people living with HIV (HRSA, 2009).

At the societal level, AIDS stigma is manifested in laws, policies, popular discourse, and the social conditions of persons living with HIV/AIDS and those at risk of infection. NASW recognizes that people with HIV/AIDS, and sometimes even those that have been tested for the virus, continue to face discrimination in employment, military service, housing, access to health services, social and community programs, and basic civil and human rights (NASW, 2008). Societal stigma emerges in the form of laws, regulations, and policies that single out people with HIV. For example, local school boards’ refusal to enroll HIV-positive children; the criminalization of HIV transmission and forcible segregation of HIV-positive prisoners; and reducing the protections afforded to HIV-positive individuals under the Americans with Disabilities Act (ADA). (NASTAD, 2001). Additionally, social stigma is practiced through failure of public policy and practices, as well as private groups; non-government organizations (NGO’s), and faith based organizations that do not recognize or ensure equal rights for gay, lesbian, bisexual, and transgender persons. (Wilson, 2010)

HUMAN RIGHTS AND INTERNATIONAL AFFAIRS DIVISION

UNDERSTANDING HIV/AIDS STIGMA AND DISCRIMINATION

Evelyn P. Tomaszewski, MSW • Senior Policy Associate • March 2012

HRIA-FL-11612.HIV-AIDSPU:September 2007.Highlights 3/12/12 3:09 PM Page 1

HIV/AIDS Stigma is a Global Problem

Stigma and discrimination associated with HIV/AIDS have played a large role in the HIV/AIDS global pandemic particularly affecting marginalized populations such as gay and bisexual men and men who have sex with men, youth, commercial sex workers, women, and persons who inject drugs. While access to appropriate treatment and care for individuals with HIV/AIDS is generally recognized as a fundamental human right, discrimination prevents individuals from getting tested and seeking or adhering to treatment and care due to the stigma associated with being HIV positive. For example, in the United States, it is estimated that one in five persons living with HIV/AIDS is unaware of their health status (CDC, 2008). Globally, the overall number of people living with HIV has steadily increased as new infections occur each year, with young people (ages 15–24) accounting for an estimated 45 percent of new HIV infections worldwide (UNAIDS, 2008).

An extensive survey by nongovernmental organization (NGO) representatives of the UNAIDS Program Coordinating Board confirmed that people living with HIV, as well as marginalized and at-risk populations, continue to experience high levels of HIV-related stigma and discrimination. Almost half of respondents experienced negative attitudes or exclusion from family members. At least one-third of the sample identified discrimination in the form of loss of employment, refusal of care by health care workers, social or career exclusion, and/or involuntary disclosure. Additionally, a large percentage of respondents in all countries reported internalized stigma: feeling ashamed, guilty, suicidal, and blameworthy (UNAIDS, 2010). While a growing number of countries have adopted laws to protect people living with HIV from discrimination, as of 2007 nearly one third of countries still lacked laws and regulations to prohibit HIV-based discrimination. (UNAIDS, 2008). Ultimately, HIV/AIDS stigma is a global problem, requiring social workers to embrace a coordinated, global solution to tackle its root causes and enable individuals to seek prevention, care, and treatment services without the fear of being stigmatized.

Stigma is an obstacle to HIV prevention, care, and treatment.

The practical and psychological burdens of stigma create formidable obstacles to effective HIV prevention. Individuals at risk, particularly those who are members of

marginalized and at-risk groups, may internalize stigma; with an associated impact being self stigmatizing beliefs and actions (Avert, 2011). Homophobia, stigma, racism, and discrimination negatively affect the health and well-being of gay men and other men who have sex with men (MSM), other members of the LGBT community, and result in the added burden of stress and health disparities (CDC, 2010). Stigma also has the effect of leading some people to believe they are not at risk, as they discount their actual personal risk because they do not identify with a particular group or community. Stigma can also lead to a form of denial that deters some people from testing for HIV or otherwise seeking treatment; even though it is well established that earlier medical intervention can dramatically improve health outcomes. Stigma is a powerful deterrent of individual freedom and self- determination. (Pardasani, M., Moreno, C.L, & Forge, N., 2010)

It is noted that stigma also isolates families. It can discourage households from registering affected children in national support programs, and further limits access to information, prevention, care, and treatment. Globally, support for adults and children affected by the epidemic are provided by underfinanced civil society groups, with limited government support. This results in gaps in funding and services, as well as discrimination in laws and/or policy. (UNAIDS, 2008).

Social workers have a critical role in combating HIV/AIDS stigma and discrimination.

The National Association of Social Workers’ Policy Statement on HIV/AIDS outlines the profession’s role in addressing service delivery, primary and secondary education and prevention, political action, and research. The policy statement notes that HIV/AIDS has become a “mainstream disease,” with social workers across fields of practice working with clients with HIV or clients who are at risk of becoming infected with HIV. Given the high incidence of HIV, the global social work profession must take an active stance to mitigate the overwhelming psychological and social effects, including the inequality of access to medical care and the lack of education and prevention in the United States and internationally.” (NASW, 2012). The International Federation of Social Workers’ International Policy on HIV/AIDS addresses the importance of respectful partnerships with persons living with HIV/AIDS, and the profession’s ongoing advocacy

HUMAN RIGHTS AND INTERNATIONAL AFFAIRS DIVISION

HRIA-FL-11612.HIV-AIDSPU:September 2007.Highlights 3/12/12 3:09 PM Page 2

and support to the global implementation of comprehensive anti-discriminatory policies for people affected by HIV/AIDS. (IFSW, 2006)

The NASW Code of Ethics addresses stigma, prejudice, and discrimination on several different levels. The Code of Ethics specifically outlines ways in which social workers can deal with discrimination, and clearly states that social workers should not practice, condone, facilitate, or collaborate with any form of discrimination on the basis of race, ethnicity, national origin, color, sex, sexual orientation, gender identity or expression, age, marital status, political belief, religion, immigration status, or mental or physical disability (NASW, 2008).

Social work interventions can make a difference.

Work to dispel the myths and stereotypes about HIV/AIDS. Provide accurate information about how HIV is transmitted. Know where to refer clients for testing, how to ensure confidentiality, and the range of available treatment options. Seek out professional development continuing education that addresses HIV/AIDS and co-occurring diagnoses. The NASW HIV/AIDS Spectrum Project provides practice information and policy resources.

Work to affect change on a local, national, and international level. Get involved in community-sponsored events. Lobby your elected officials to increase funding for AIDS education, treatment, and prevention. Advocate with your local and state agencies to support the National HIV/AIDS Strategy. (ONAP, 2010). Speak out against the criminalization of HIV transmission and challenge policies that discriminate persons living with HIV/AIDs. Get involved in global events such as World AIDS Day.

Increase awareness, stay informed, and share information with clients, family and friends. For example, encourage discussion with family, friends, and colleagues about HIV/AIDS prevention and early intervention strategies. Because HIV/AIDS does not discriminate, everyone is directly or indirectly affected by HIV/AIDS. Keep the lines of communication open in order to tear down barriers, breaking isolation and fear. Encourage use of the People Living with HIV Stigma Index, a tool that is designed to measure and detect changing trends in relation to stigma and discrimination experienced by people living with HIV worldwide (IPPF, 2008).

Work toward culturally competent practice with all clients. Have an awareness and understanding of the implication and role of (for example) racism, sexism, class conflict, and homophobia in meeting the needs of clients and families affected by HIV/AIDS. In addition to a sense of “self awareness” of one’s own culture, work to be sensitive to cultural differences while advocating respect for individual differences. Because cultural competence is not static, maintaining cultural and linguistic competency is a long-term commitment (Diaz, 2002; NASW 2007).

HUMAN RIGHTS AND INTERNATIONAL AFFAIRS DIVISION

HIV/AIDS IS A GLOBAL ISSUE

“Stigma remains the single most important barrier to public action. It is a main reason why too many people are afraid

to see a doctor to determine whether they have HIV, or to seek treatment if so. It helps make AIDS the silent killer, because

people fear the social disgrace of speaking about it, or taking easily available precautions. Stigma is a chief reason why

the AIDS epidemic continues to devastate societies around the world.” (U.N. Secretary General Ban Ki Moon, 2008).

The People Living with HIV Stigma Index or ‘Stigma Index’

is a tool created by and for people living with HIV to

measure how stigma and discrimination are experienced

by people living with HIV. The data gathered from the

Stigma Index will be used to 1) highlight success and

failures of current programming and 2) design and

implement more effective programs around the globe.

www.stigmaindex.org

HRIA-FL-11612.HIV-AIDSPU:September 2007.Highlights 3/12/12 3:09 PM Page 3

REFERENCES

Avert. (2011) HIV/AIDS Stigma and Discrimination. [Online] www.avert.org/hiv-aids-stigma.htm

Center for Disease Control and Prevention (CDC). (2011) A public health approach for advancing sexual health in the United States: Final Meeting Report [Online] www.cdc.gov/sexualhealth/docs/Sexual HealthReport-2011-508.pdf

Center for Disease Control and Prevention (CDC). (2010) Stigma and Discrimination. www.cdc.gov/msmhealth/stigma-and-discrimination.htm

Center for Disease Control and Prevention (CDC). (2008) [Online]. New Evidence of HIV Prevalence. CDC Factsheet. www.cdc.gov/nchhstp/Newsroom/docs/prevalence.pdf

Diaz, L. (2002,). Cultural Competency. Equity Practice Update Volume 1, (3). Washington, DC: NASW National Association of Social Workers. (2000).

Health Resources Services Administration (HRSA) Care Action. February 2009. The Graying of HIV. [Online] http://hab.hrsa.gov/ newspublications/careactionnewsletter/february2009.pdf]

Holzemer, W. & Uys, L.R. (2004), Managing AIDS stigma. [Online.] www.sahara.org.za/index.php/Download-document/240-Managing- AIDS-stigma.html

International Federation of Social Workers (IFSW). 2006. International Policy on HIV/AIDS. [Online] www.ifsw.org/p38001031.html

International Planned Parenthood Federation (IPPF). (2008). The People Living with HIV Stigma Index. [Online]. www.stigmaindex.org

National Association of Social Workers. (2008). NASW Code of Ethics. (2008) Washington, DC: NASW. [Online]. www.socialworkers.org/pubs/code/default.asp

National Association of Social Workers. (2012). Policy on HIV/AIDS. NASW Social Work Speaks: Policy statements of the National Association of Social Workers, 2012-2014 (9th Ed.). Washington, DC: Author.

National Association of Social Workers. (2007). Indicators for the Advancement of NASW Standards for Cultural Competence in Social Work Practice. [Brochure]. Washington, DC: Author.

Office of National AIDS Policy (ONAP). (2010). National HIV/AIDS Strategy for the United States. [Online] http://aids.gov/federal- resources/policies/national-hiv-aids-strategy/

Pardasani, M., Moreno, C.L., Forge, N.R., (2010). Cultural Competence and HIV. Handbook of HIV and Social Work. Poindexter, C.C., (Ed.)., John Wiley & Sons: NJ.

UNAIDS (2010). Global Report: UNAIDS Report on the Global AIDS epidemic (2010). [Online] www.unaids.org/globalreport/documents/ 20101123_GlobalReport_full_en.pdf

UNAIDS (2008) 2008 UNAIDS Annual Report: Towards Universal Access, [Online] http://data.unaids.org/pub/Report/2009/jc1736_2008_ annual_report_en.pdf

United Nations Secretary General Ban Ki-moon op-ed (2008). The Stigma Factor [Online] at www.washingtontimes.com/news/2008/ aug/06/the-stigma-factor/.

Wilson, R. (2010) Human Rights and HIV: Men who Have Sex with Men. HIV and the Rule of Law: Right Here, Right Now. Spring 2010, Vol. 37. No. 2. Washington, DC: American Bar Association. [Online] www.americanbar.org/publications/human_rights_magazine_home/ irr_hr_hr_spring10_home.html

HUMAN RIGHTS AND INTERNATIONAL AFFAIRS DIVISION

SocialWorkers.org

©2012 National Association of Social Workers. All Rights Reserved.

HRIA-FL-11612.HIV-AIDSPU:September 2007.Highlights 3/12/12 3:09 PM Page 4

Commentary

Thirty Years into the HIV Epidemic: Social Work Perspectives and Prospects

NATHAN L. LINSK, PhD Jane Addams College of Social Work, University of Illinois at Chicago, Chicago, Illinois, USA

June 5, 2011, marked the thirtieth anniversary of the publication of the first case reports of HIV among gay men in San Francisco and Los Angeles, gen- erally the point in time agreed upon as the start of the epidemic. From the start, social workers made key contributions along with other health provi- ders in developing knowledge and services to help those affected and infected and avoid future infections. HIV social work contains all of the chal- lenges and satisfactions entailed throughout the social work profession due to the wide array of activities we perform as social workers—case manage- ment, other forms of direct clinical practice, supervision of social workers, professionals, and para-professionals, empowerment practice, program development, engaging stakeholders, participation in policy setting, and advocacy of every type, stripe, and category. Our work with individuals, fam- ilies, groups, and communities uses the entire array of social work competen- cies, in terms of our abilities to assess needs on a variety of systems levels and identify resources to formulate and implement interventions. While the evi- dence base for these interventionsmight not have been fully developed, social workers working with HIV-affected clients had to be adept at formulating best practices from what was available in their settings and in their communities.

From the beginning of the epidemic, social workers have had the opportunity to engage the human experience in depth, responding with a variety of ways to help, ranging from crisis and trauma work to supportive interventions, as well as therapeutic interventions with those living with pro- gressive physical and social losses. Our efforts have consistently stressed the need to support strengths and address both environmental supports and underlying mental health issues, not only for the persons with HIV but also for their family members and social networks. In addition, social workers

Address correspondence to Nathan L. Linsk, PhD, Jane Addams College of Social Work, University of Illinois at Chicago, MC 309, 1040 West Harrison Street, Chicago, IL 60607-7134, USA. E-mail: [email protected]

Journal of HIV/AIDS & Social Services, 10:218–229, 2011 Copyright # Taylor & Francis Group, LLC ISSN: 1538-1501 print=1538-151X online DOI: 10.1080/15381501.2011.598714

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with our ethic of acceptance and diversity were willing and able to address HIV’s conundrums: fear of the unknown, pervasive stigma, and a rapidly evolving epidemic with novel treatment responses emerging almost every year, set within the coexisting conditions of poverty, isolation, mental illness, and addictions. HIV often entails ‘‘off time’’ life events (Hagestad & Neugarten, 1976), whereby individuals may experience illness and take care of others who are sick and dying at ages far below what is developmentally normative. These circumstances all entail complex social and emotional issues that need intensive psychosocial interventions.

Like our clients—whether they are people, systems, or communities, we have had to learn to thrive on challenge, to become resilient, and to grow from the experience. This is particularly critical when applying the central social work paradigm of the connection between the person and the social environment (Karls, O’Keefe, & National Association of Social Workers [NASW], 2008) to a new disease. Social workers have learned that we need to care for ourselves in order to care for others on a consistent basis. The alternative is burnout, compassion fatigue, and disengagement from the workforce (Demmer, 2004). While some have moved on to other challenges, social workers have often been the catalysts and leaders who have created and sustained solutions to the dilemma of HIV (Willinger & Rice, 2003).

LOOKING BACK: A SHORT HISTORY OF HIV=AIDS SOCIAL WORK

In the early 1980s, HIV=AIDS became visible within health care systems, first on the east and west coasts and later throughout the United States. As social workers, like everyone else, we were unprepared, knew little, and had to approach these events through the lenses of our own experience working with clients, be they in health care or in other fields of practice. The social work response initially emerged as workers attempted to assist those with this new, often mysterious deadly syndrome. Our professional colleagues, at the beginning of the epidemic, had to be dedicated and innovative. In our initial efforts, we found ways to work with other disciplines that often had more power than we did. As social workers, we had to be flexible and responsible, often making things up to create new strategies as we went along. Much of our knowledge and techniques in the developing field of HIV practice came from other fields of social work practice including oncology practice, medical social work, and service to the frail and aged. Our historical work with the disadvantaged—be they adults, children, or their families— provided a good foundation for this rapidly declining and vulnerable com- munity. The review that follows is only a sample of the achievements made by social work in response to HIV, and I regret leaving out any significant organizations or people who made great contributions to our field.

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Largely our history is recorded only in the limited articles written for practice audiences, less so for research and evaluation audiences. Barbara Willinger and Alan Rice (2003), however, have done us a favor in pulling together recollections of various social workers throughout the epidemic and cite works by prolific authors such as Michael Shernoff, including his efforts to start a Social Work HIV Journal, Readings and Writings, which attempted to track a bit of what went before.

PRACTICE INNOVATIONS

Three decades ago, HIV first appeared in health settings and the emergence of key services owes much to the established social work methods that were quickly adapted. Early on, care consisted of treatments for opportunistic infections and some prophylaxis, although the shifting array of proposed treatments reflected an ongoing search for solutions. At the time, although little could be done on a medical level, the need for social care was over- whelming. Skills such as crisis management, assisting with ‘‘adjustment to ill- ness’’ (a term used pervasively in health social work), medical compliance, decision making about disclosure, addressing family conflict, legal-ethical issues, and linkage to the limited other available services were paramount. Whether the persons carrying out these tasks were called social workers or not, a majority of the activities of those providing service fit squarely in the social work domain.

First and foremost, social work intervention, in all its parts, had enor- mous applicability to HIV. Counseling skills such as assessing needs, treat- ment planning, identifying priorities, supportive listening, problem solving, and crisis management were critically useful. However, the social work strength-based approach (Graybeal, 2001) of working with the person within their social environment was especially useful to help both infected and affected people to work with others using a psycho-social-spiritual approach (Tomaszewski, 2010). In particular, we as social workers learned to be sensi- tive to the cultural meanings of loss, seeking help with illness, caring, and taking care of oneself as these meanings vary across the diverse contexts of our clients’ lives (Kaopua, 1998).

The crucial role of support groups provided bridges for isolated people with HIV, their caregivers, and their families (Weiner, 2003; Willinger, 2003). Often in need of emotional contact and direct support, these groups created normality in a highly unpredictable situation. In fact, social work’s role in involving families, be they families of origin or choice, and mediating in times of family challenges are directly traceable to our initial efforts in HIV care provision. From our tradition, involving multiple systems social work has created new fields of practice including family mediation, family therapy for the persistently ill, and family-based care.

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Soon we adapted case management and its medical cousin, discharge planning, to the needs of people with HIV and their families. Case manage- ment is a concept borrowed from our earlier work in gerontology and mental health. Based on ongoing assessment and coordination of services, case management operationalizes the referral process, including an ongoing assessment, development, implementation, and coordination of plans of ser- vices in order to provide ongoing support for the person and their family (Chernesky & Grube, 2000). Often social workers became a critical part of people’s lives by convening the care team and holding patient and family conferences.

On an organizational level, some social workers led development of regional case management programs, using their clinical and administrative expertise to shape a panoply of client-centered services for those who were refused services by existing facilities. For example, Susan Gallego was instru- mental in developing culturally competent services at AIDS Services of Austin, Texas. Helen Land developed caregiver support groups in Los Angeles and designed different types of support groups for different popula- tions (e.g., multicouple groups, gay men, etc.). In Chicago, we convened a coalition of social workers, nurses, and others and formed a ‘‘case manage- ment cooperative’’ created to share ownership of a citywide system of care coordinated by the AIDS Foundation of Chicago. Of course many of the innovations occurred in New York under the auspices of the Gay Men’s Health Crisis, which formed of necessity to address the emergency of caring for so many needy people with HIV. In a few places, case management was integrated into other service systems. For example, Charles Emlet led a large case management program integrated with aging services in Alameda, California. The Area Agency on Aging in Phoenix, AZ, has been integrating aging services with HIV services for many years.

Finally, client and systems advocacy, an essential part of social work, are indispensably a part of HIV social work. Empowering clients to advocate for themselves, supporting mutual help, individual problem solving to make sys- tems more responsive, and legislative and policy work all resonate with stan- dard social work practices. Among all these efforts, social workers took the lead in creating advocacy responses.

LEADERSHIP

Has social work established a domain for the profession in the HIV=AIDS field? Social workers have been at the forefront of HIV=AIDS services but all too often in secondary roles or, worse yet, without revealing they are social workers. There are two levels of leadership for social work HIV work: first, internal to the social work profession, and, second, to leadership of HIV programs or systems by social workers. On the larger level, many social

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workers have had key positions in developing programs and policies, serv- ing as program directors, and chairing task forces and planning councils. Highlighted here are a few noteworthy leaders in our field. David Harvey established and was executive director of the AIDS Alliance for Children, Youth and Families for many years. Tom Sheridan was the policy director at AIDS Action when the Ryan White program was launched, and Nathan Linsk, Cynthia Poindexter, and Vincent Delgado were instrumental in the initiation and development of the National Association on HIV Over Fifty.

Social workers have also provided leadership in a number of population specific and research areas. Helen Land was among the first to call attention to undocumented Latinas infected and caring for family members with HIV— and they did so often anonymously due to stigma in their families and com- munities. She was awarded one of the first R01 National Institutes of Health grants given to study the stress process and its affect on physical and mental health over time, including the effects of multiple bereavement and bereave- ment recovery. Larry Gant has conducted a wide array of research and pro- gram evaluation dealing particularly with issues for African American men in urban areas. Lori Weiner has taken leadership in a variety of areas related to HIV and children at the National Institutes of Health. Jack Stein, after having chaired the National Association of Social Workers initial HIV Task Force (see later), has moved ahead in a number of key leadership roles for the Sub- stance Abuse Mental Health Services Administration as well as the National Institute for Drug Abuse.

We should recall and celebrate how social work has incorporated HIV into our infrastructure and support programs. A number of efforts have orga- nized leadership of the social work role in the HIV epidemic, and some insti- tutional response has been successful. As early as 1985, a number of cities created SWANs, Social Work AIDS Networks, which provided support, con- sultation, networking, and education to social workers addressing HIV in their areas (Ostrow, 2003). A National Social Work AIDS Network was estab- lished under leadership of Willis Green and subsequently Darrell Wheeler and Ednita Wright. While local SWAN groups may still exist, we have only this year established an ongoing professional organization addressing HIV and social work, the newly established Professional Association of Social Workers in HIV and AIDS (PASWHA, http://www.paswha.org), led currently by president Alan Rice, LCSW, which is a membership organization providing support, resources, and advocacy.

Three of our pioneering leaders, Vincent Lynch, Gary Lloyd, and Manual Fimbres, came together in Boston in 1989 with support of the New England AIDS Education and Training Center to launch the first national conference on HIV and social work. The HIV Social Work Response conference is a signal achievement as the only consistent entity that has regularly addressed social work HIV roles and has had significant collaborations with the Ryan White CARE program and a set of schools of social work and HIV

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organizations. This year, over 500 participants came to the conference in Atlanta, GA. Each year the conference is rotated in various parts of the coun- try, with next year’s conference scheduled for Miami, FL, and the following in Chicago, IL. Lynch, along w

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