People Living With HIV Feed

May 04, 2011

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It is a Civil Right to Live Free from Discrimination on the Basis of HIV/AIDS Status

By David W. Knight, Trial Attorney, Disability Rights Section, Civil Rights Division, U.S. Department of Justice

Department of Justice

When the Attorney General, Eric H. Holder, Jr., signed the Justice Department’s operational plan (PDF 354 KB) for implementing the National HIV/AIDS Strategy, he underscored the Department’s leadership role in eradicating discrimination against those living with HIV/AIDS. The Civil Rights Division has significant enforcement authority over the Americans with Disabilities Act, the Fair Housing Act, and the Rehabilitation Act of 1973 - Federal laws that protect individuals with HIV/AIDS from discrimination on the basis of their HIV/AIDS status. In furtherance of its leadership role, the Division is partnering with community-based groups in order to educate individuals with HIV/AIDS about their rights under the law. 

Last month the Department partnered with the AIDS Community Research Initiative of America (ACRIA Exit Disclaimer), which is funded by the Elton John Foundation, to conduct a national HIV health literacy technical assistance program. The Department joined ACRIA for intensive, two-day trainings in Memphis, Tennessee and Augusta, Georgia. In January, the Department participated in a similar training in Birmingham, Alabama. Each session provided an opportunity for the Department to reach local public health professionals, case managers, and advocates, and, in the process, to share information about illegal discrimination and build critical relationships in the communities visited.

Over the past several months, the Department has also performed direct outreach to AIDS service organizations and advocacy groups in Jackson, Mississippi; Columbus, Ohio; San Francisco, California; and Detroit, Michigan. Meetings with these organizations will continue through the year. Those interested in learning more about federal disability rights statutes, and the rights of individuals with HIV/AIDS, can call the Justice Department’s toll-free ADA information line at 800-514-0301, 800-514-0383 (TTY), or access the ADA website.

Continue reading "It is a Civil Right to Live Free from Discrimination on the Basis of HIV/AIDS Status" »

May 03, 2011

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Living With HIV Video: A Way to Educate Patients and Provide Support

By Deborah Parham Hopson, PhD, MSPH, RN, RADM, USPHS, Associate Administrator for HIV/AIDS, HIV/AIDS Bureau (HAB), Health Resources and Services Administration (HRSA)

Deborah Parham Hopson, PhD

Dr. Deborah Parham Hopson, HRSA

The Ryan White HIV/AIDS Program is the largest Federal program devoted to a single disease. Every year more than half a million people living with HIV/AIDS in the United States receive treatment. That is the foundation from which our Program is built. The involvement of the HIV/AIDS community continues to be central to our success over the last twenty-plus years of our Program’s history.

As HRSA’s HIV/AIDS Bureau (HAB) staff began working on our web pages to chronicle the history of the Ryan White HIV/AIDS Program, we knew the story of the individuals that we serve had to be told. There is, of course, no one better to speak about living with HIV or to illustrate the diversity of our Program and the resilience of the individuals we serve than the people themselves.

As such, we created a multimedia video entitled “Living With HIV”. In it the individuals served through our Program discuss their experiences in their own words. The video features people from communities across the country talking about living with HIV disease, its associated stigma, and in many ways the extended life expectancy made possible because of antiretroviral medications.

We know in public health that people are more apt to react to prevention and outreach messaging when they can see themselves and the roles they play. The combination of photography, videography, and voiceover to create a truly multimedia product seemed the perfect avenue to achieve this and, of course, the perfect way to hear from each other.

Continue reading "Living With HIV Video: A Way to Educate Patients and Provide Support" »

December 14, 2010

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Doing Right By World AIDS Day: Putting Community Front and Center

By Aryeh Lebeau, General Manager, TheBody.com Exit Disclaimer

Aryeh Lebeau

Aryeh Lebeau, TheBody.com Exit Disclaimer

World AIDS Day, December 1, presents a unique challenge to a website such as TheBody.com Exit Disclaimer that is devoted to all things HIV/AIDS year-round. How do we commemorate the day in a way that doesn’t simply rehash the information we disseminate every other day of the year? And how do we make World AIDS Day relevant before and beyond December 1? Every year, we create a special section for World AIDS Day Exit Disclaimer, but we wanted our latest effort to be more than a list of resources and statistics. We wanted it to have a lasting impact.

We decided it was time to let our audience flex its collective creative muscle. This took the form of our first-ever video contest, as well as dozens of guest blog submissions from a wide variety of voices, many of which had never been heard on our site. It turns out that the best way to get to the heart of what World AIDS Day is all about was for us to shut up and let the community do the talking.

We knew we were asking a lot with our video contest Exit Disclaimer when we sought homemade public service announcements (PSAs). We didn’t know how many people would actually take the time and effort or what kind of videos we’d receive. In the era of YouTube, when so many have Flip and cell phone video cameras, we trusted that our audience would pull through. Our faith was rewarded with a range of creative Exit Disclaimer, informative Exit Disclaimer and even heartbreaking Exit Disclaimer submissions.

Continue reading "Doing Right By World AIDS Day: Putting Community Front and Center" »

November 11, 2010

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Tobacco Control and HIV

By Miguel Gomez, AIDS.gov Director

Dr.Koh speaking to the press after the release of the Tobacco Strategy

Dr.Koh speaking to the press after the release of the Tobacco Strategy

Yesterday, Dr. Howard Koh, Assistant Secretary for Health and Secretary Kathleen Sebelius launched the first ever comprehensive tobacco control strategic action plan, Ending the Tobacco Epidemic: A Tobacco Control Strategic Action Plan (PDF) that outlines specific, evidence-based actions that will help create a society free of tobacco-related death and disease.

During a press conference at George Washington University, Dr. Koh and Secretary Sebelius were joined by Dr. Margaret Hamburg, Commissioner of the Food and Drug Administration (FDA) who announced new bolder graphic warning labels for cigarette packages and advertisements. The Center for Medicare & Medicaid Services (CMS) also issued proposed regulations that would require states to offer free smoking cessation counseling and treatment to Medicaid enrollees who are pregnant.  

Scout from the LGBT Tobacco Control Network

Scout from the LGBT Tobacco Control Network Exit Disclaimer

Tobacco use and HIV/AIDS individually and taken together have tremendous health impacts. Smoking rates of people living with HIV are estimated to be two to three times higher than the national average Exit Disclaimer. There is an increasing body of evidence that smokers living with HIV have an increased mortality rates than HIV postive non-smokers Exit Disclaimer.

"This is especially important for populations that are dually effected, such as communities of color and the LGBT community. We need to make sure that our HIV programs are integrating tobacco cessation activities and we need to make sure that our tobacco cessation programs are integrating with HIV interventions," said Scout, Director of the National LGBT Tobacco Control Network Exit Disclaimer. Stay tuned next week for a video with Scout and Matt Myers, President of the the Campaign for Tobacco-Free Kids Exit Disclaimer about smoking and LGBT/HIV communities.

What are you doing to address tobacco control in the HIV community?

October 04, 2010

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ONAP Commissions Institute of Medicine to Examine Data Gaps in Monitoring Access and Quality of HIV Care

By Jeffrey S. Crowley, M.P.H., Director and Gregorio Millett, M.P.H., Senior Policy Advisor, Office of National AIDS Policy (Cross-posted from the Office of National AIDS Policy Blog)

This time last year, the Office of National AIDS Policy (ONAP) announced a contract with the Institute of Medicine (IOM) to conduct a series of policy analyses to help inform the National HIV/AIDS Strategy.  The first of three reports from this project was released two weeks ago and presents important information for policymakers and members of the public working to expand HIV testing and screening in order to identify and link to care all people living with HIV (http://www.iom.edu/Reports/2010/HIV-Screening-and-Access-to-Care-Exploring-Barriers-and-Facilitators-to-Expanded-HIV-Testing.aspx ).  The second report on policy issues surrounding access to care is forthcoming, while the workshop for the final policy analysis on increasing the HIV provider workforce took place last week (http://www.iom.edu/Activities/PublicHealth/HIVScreeningCare/2010-SEP-29.aspx ).  Each of these analyses will provide critical information that will help support the implementation efforts for the strategy.

ONAP has recently partnered with the IOM on a new initiative. The implementation of the ACA and the development of the National HIV/AIDS Strategy create a unique opportunity to dramatically improve access to insurance coverage and the quality of care and clinical outcomes achieved by people living with HIV.  Various entities (Federal, state, local, private) collect data on people living with HIV related to financial status, demographics, insurance coverage, and use of health services, but these activities are not well coordinated.  As a consequence, there are gaps in our understanding of successful approaches and also barriers to ensuring that all people living with HIV receive the highest quality care.  As we work toward full implementation of the ACA in 2014, it will be useful to establish baseline measures and consider monitoring strategies to ensure that people living with HIV are receiving high quality, clinically necessary services designed to achieve optimal clinical outcomes. 

Over the next two years, IOM will convene a Study Committee to consider questions such as:

  • What are the best sources of data (and which core data elements should be standardized) across public and private HIV care databases that track continuous care (and related services such as housing) for people living with HIV?
  • How do claims data and clinical data found in medical records differ?  Do these differences encompass gaps in measures for HIV care? 
  • How can Federal agencies efficiently analyze data that are already being collected in order to improve HIV care quality?
  • What models or best practices in data system integration can be gleaned from Federal agencies or private industry to make existing data systems and core indicators interoperable?

The Committee will provide recommendations based upon these questions via a published report toward the end of calendar year 2011.

Another important and related activity that we are asking IOM to tackle is to investigate and provide suggestions on how to obtain meaningful national level estimates of access to care and services utilization by people living with HIV.  The Committee will examine issues such as:

  • How do we obtain national estimates that characterize the health status of people living HIV in public and private settings?
  • How can we obtain data from a nationally representative sample of HIV-positive individuals in the United States to establish a baseline for health insurance coverage and health care access status from which to measure improvements?  If this is not readily feasible, are there other alternatives to a nationally representative sample that can provide useful data for informing national policies?

IOM will prepare a second report that will be released near the end of the second year of the project that provides recommendations of how to best obtain these national data. 

We believe that this new project will significantly support our collective efforts to implement and effectively measure our progress toward achieving the established metrics in the National HIV/AIDS Strategy and will support broader efforts to integrate people living with HIV in the implementation of the ACA.

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