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Issues

Women and AIDS

Women living with HIV/AIDS often place the needs of their families ahead of their own, including health care. Ryan White outreach and primary care programs empower these women to live longer, healthier lives and HRSA works to better educate providers to address the unique needs of this population.

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Gay Men

Gay men have been heavily impacted by HIV/AIDS since the beginning of the epidemic. Gay men have helped lead the way towards creating high standards of culturally competent care and integral to the creation and direction of the Ryan White HIV/AIDS Program.

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Cultural Competency

Culturally competent service providers are crucial to recruiting and retaining people living with HIV/AIDS into primary care, particularly when they are members of historically disenfranchised communities and populations such as people of color, gay men, women, and substance users.

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Confidentiality

Ryan White confidentiality guidelines have helped allay the fears that many people living with HIV have around unwanted disclosure and HIV discrimination.

Treatment Advances

The Ryan White HIV/AIDS Program ensures people living with HIV/AIDS have access to the latest treatments, including life-saving AIDS medications. Advances in vaccine and pharmaceutical research promise new ways to treat, and perhaps halt, HIV infection in the future.

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African-Americans

African-Americans are the racial and ethnic group most disproportionately affected by the HIV/AIDS epidemic. By providing culturally competent, comprehensive care the Ryan White HIV/AIDS Program is committed to turning this tide.

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Aging

Wonderful advances in treatment have brought with them the promise of longer life for people living with HIV. The Ryan White HIV/AIDS Program has been there, growing with the people it serves and ensuring that the program’s aging patients have many years of good health and happiness to look forward to, every step of the way.

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HIV/AIDS Stigma

Stigma represents one of the most complex and pervasive barriers to health care for people living with HIV/AIDS. From the beginning, the Ryan White HIV/AIDS Program has fought against the discrimination and isolation that stigma creates, a commitment that helps more people engage and remain in care.

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Rural Challenges

In rural America, unique challenges add to the complexity of providing care for people living with HIV/AIDS. The Ryan White HIV/AIDS Program is, thus, a critical source of support in remote areas, helping patients overcome barriers to care as well as providing technical assistance for providers.

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Young People

Youth represent the only age group in the United States still experiencing increases in HIV diagnoses. The Ryan White HIV/AIDS Program is working tirelessly to find ways of reaching more of these at-risk young people and providing the kind of comprehensive, responsive care that can change lives.

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Building Trust: Confidentiality and the Ryan White HIV/AIDS Program

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Every decision you made you thought about confidentiality because people were losing their jobs, their houses, their health care.

—Jane Silver,
first director of AIDS programs for the Department of Health in Washington, DC1

From the beginning of the Ryan White HIV/AIDS Program, Title I (now Part A) Planning Councils were required to include among their membership a person living with HIV, but finding a member to identify as HIV positive was not always easy. Health Resources and Services Administration (HRSA) HIV/AIDS Bureau (HAB) Project Officer Sheila McCarthy recalls attending one local Planning Council meeting in the Program’s early years in which each person on the council put a “+” or “−” on a blank piece of paper to indicate whether they were HIV positive or negative and then put the paper in a bowl. With at least one + in the bowl, the council could document that it had a member who was living with HIV, but no one knew who that person was.2

Disclosure of one’s status as a person living with AIDS and, later, HIV has been an issue from the earliest days of the epidemic, and the desire to protect the confidentiality of HIV status has had a profound impact on the Nation’s response to HIV/AIDS, including the Ryan White HIV/AIDS Program. For the Ryan White HIV/AIDS Program, confidentiality concerns have affected the types of testing programs supported; shaped the data that HAB collects about who is accessing funded services and how; and affected how HIV/AIDS cases are reported to the U.S. Centers for Disease Control and Prevention (CDC), which in turn drives Ryan White HIV/AIDS Program funding formulas.

The privacy of all medical information is deeply rooted in history and tradition, going back to the Hippocratic Oath: “Whatever I see or hear in the lives of my patients, whether in connection with my professional practice or not, which ought not to be spoken of outside, I will keep secret, as considering all such things to be private.”3 Such privacy has been extremely important for people living with HIV/AIDS (PLWHA), many of whom have faced stigma, discrimination, and hostility from the earliest days of the epidemic. Fears of disclosure remain today.

Given many of the reactions that PLWHA have faced since the beginning of the epidemic, such fears are of no surprise. As noted in the Institute of Medicine’s (IOM’s) landmark 1986 report Confronting AIDS, Exit Disclaimer “the stigma associated with AIDS has led to instances of discrimination in employment, housing, and access to social services.”4 The 1988 update of the report stated that “numerous anecdotal accounts portray the difficulties faced by persons with AIDS or even by persons who are members of a risk group. A number of court cases have been filed involving victims of AIDS-related discrimination in a variety of settings . . . . and complaints have been docketed with State and local human rights commissions.”5

Since the beginning of the epidemic in the United States, HIV/AIDS has disproportionately affected populations that already experience discrimination, including gay men; members of racial and ethnic minority groups; and those who engage in certain illegal behaviors, such as illicit drug use and sex work. The stigma faced by PLWHA is rooted in the stigma faced by these populations as well as reactions to the disease itself. As an incurable, progressive illness, AIDS forced people to confront issues of death, and because it is transmissible, people with the disease are sometimes perceived as putting others at risk and even blamed for becoming infected as result of their own behaviors. As an early research team noted,

The stigma attached to AIDS as an illness is layered upon preexisting stigma. The result is that as public perceptions of AIDS become inextricably tied to perceptions of the groups among which it is most prevalent, the stigma of disease and death become attached to the groups themselves. AIDS has become a symbol: Reactions to AIDS are reactions to gay men, drug users, racial minorities, or outsiders in general.6

The early experiences of Frank Oldham bear out these conclusions. Now president and CEO of the National Association of People With AIDS, Oldham lived in New York City’s Chelsea neighborhood and worked at the New York City Department of Health and Mental Hygiene in the 1980s. He recalls an atmosphere during that period akin to a witch hunt in which any gay man who was thin was suspected of being ill. “The general public did not understand HIV transmission; there was a huge fear of people living with AIDS and a fear of gay men.” As one example of these fears and their impact, Oldham remembers a sick colleague in the health department who tried to hide his physical wasting as long as possible by doubling up on his clothes. Other employees went to their supervisors saying that they did not want to sit next to him and, later, that they did not want him working in the office at all.7

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