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PLWHA who do not have results for either CD4 or viral load reported for a year or more are determined to be out of care and are listed in LaPHIE. If that patient then enters care at any of the LSU hospitals, a message goes to the electronic records system. In addition, the doctor or nurse gets an instant message that the person tested HIV positive but is not currently receiving care, providing an opportunity to reengage that patient. The program was developed after extensive research on legal and ethical issues as well as consumer input through a variety of mechanisms, and technological and systematic protections are in place.19 In the program’s first 14 months, 199 patients were identified as out of care, and of those, 89 have returned to care.20

The understanding that personalized data and information can profoundly affect individual and community health is having a powerful impact on improving quality of care. Nevertheless, many of the fears that existed at the beginning of the epidemic still exist today, and programs must move forward with that in mind. According to Phill Wilson of the Black AIDS Institute,Exit Disclaimer the biggest fear of the newly diagnosed people with whom he speaks today “is that they will be rejected, that they will lose friends and family, that people won’t love them. The issue of their own mortality is a distant second. They are more afraid of the stigma than the disease, at least initially, although that changes over time. The good news is that that fear is, in fact, increasingly unfounded, but people don’t know that, and the perceived risk is too great.”

Wilson said he receives calls from many people who are entering care for the first time with full-blown AIDS, a significant proportion of whom knew they were positive but had not entered care for fear that others would learn of their status. He notes that these fears are still found in big cities and small towns all over the country, even in the HIV epicenters that have been dealing with large-scale HIV epidemics for decades. Wilson observes: “No matter how big of a city we live in, most of us live in neighborhoods, and while the larger city may be available to you, that’s not where you live. It doesn’t matter if you live in Southeast Washington, DC, or Brookehaven, Mississippi. . . . From the calls I get, especially from young people, they are afraid of the stigma.”21

Conclusion: The Need for Confidentiality Continues

Much has changed for the better in the three decades of AIDS––better understanding of HIV transmission, effective treatments, and protections in the Americans with Disabilities Act for people living with HIV/AIDS––but the stigma, discrimination, and related fears that drive the need for strong confidentiality protections remain disturbingly prevalent:

  • From FY 2000 through FY 2009, the U.S. Equal Employment Opportunity Commission received 2,175 complaints of HIV discrimination. More people claimed discrimination in FY 2009 than in any year since FY 2002.22

  • A 2009 survey of barriers to health care found that nearly 63 percent of respondents with HIV reported one or more of the following experiences: being refused needed care; being blamed for their health status; or experiencing a health care professional refusing to touch them, using excessive precautions, using harsh or abusive language, or being physically rough or abusive.23

  • A man living with HIV was ejected from an assisted-living facility in Little Rock, Arkansas, in 2009, and in 2007 a campground in Alabama banned a toddler living with HIV from using its common areas, including the swimming pool.24

  • Until early 2010, the United States maintained a travel and immigration ban on people living with HIV that was “rooted in fear rather than fact,” according to President Barack Obama.25
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