A Conversation with Project Inform

Guest post by Alan McCord, Director of Information and Outreach, and Dana Van Gorder, ED, Project Inform

We use this blog to share some of the resources and work being done in the HIV community, focusing on organizations that are using new media to get the word out and enhance their services. As we've mentioned before, it's important to make use of ALL the tools available, including one of the most basic, and ubiquitous, the telephone. We asked Alan McCord, Director of Information and Outreach, and Dana Van Gorder, ED, of Project Inform , to tell us more about their work and the role of new and more traditional media. Here is what they had to say:

Medicare Expands Coverage for Treating Facial Lipodystrophy Syndrome in People Living With HIV

Last week, the Centers for Medicare & Medicaid Services (CMS) issued a press release to announce its decision to cover facial injections for Medicare beneficiaries who experience symptoms of depression due to the stigmatizing appearance of severely hollowed cheeks resulting from the drug treatment for Human Immunodeficiency Virus (HIV). The decision, that was announced on March 23, 2010 was effective immediately.

According to a CMS press release,“facial lipodystrophy (LDS) can leave people living with HIV looking gaunt and seriously ill, which may stigmatize them as part of their HIV-infection status. Individuals who take these medications and experience facial LDS side effects may suffer psychological effects related to a negative self-image. These effects may lead people living with HIV to discontinue their antiretroviral therapies. The new decision allows for treatment of individuals who experience symptoms of depression due to the appearance changes from facial LDS.”

Last week’s decision “marks an important milestone in Medicare’s coverage for HIV-infection therapies,” said Barry M. Straube, M.D., CMS Chief Medical Officer and Director of the Agency’s Office of Clinical Standards & Quality. “Helping people living with HIV improve their self-image and comply with anti-HIV treatment can lead to better quality of life and, ultimately, improve the quality of care that beneficiaries receive.”

Access the complete press release and the final decision on the CMS website.

Putting TLC+ to the Test

By Carl W. Dieffenbach, Ph.D., Director of NIAID Division of AIDS

Dr. Carl Dieffenbach, PhD

If we routinely test everyone for HIV and treat those who are infected, could we bring an end to the HIV/AIDS epidemic? The test and treat concept, modeled on data from South Africa by scientists at the World Health Organization, is a provocative HIV prevention strategy. According to mathematical modeling, a successfully implemented test and treat program could significantly reduce the number of HIV infections in South Africa within 10 years. While a growing number of experts within the HIV/AIDS community are intrigued at the possibility, no one knows whether this strategy would work in the real world.

The National Institutes of Health (NIH), the premier research institution of the U.S. government, is taking steps to find out. NIH is planning a 3-year study in 6 major U.S. cities. Called TLC+ (for Enhanced Test, Link to Care Plus Treat Strategy), this study will explore the feasibility of expanding HIV testing, better linking those who test HIV positive to medical care and treatment, and improving adherence to HIV treatment. The components of TLC+ will be evaluated against the current standard of HIV testing and treatment.

Lessons Learned from SXSW 2010

By Jeremy Vanderlan, AIDS.gov Web Developer, and Cathy Thomas, AIDS.gov Technical Director

Austin is a town with a distinct vibe. Where cowboy boots would be expected, nose rings are present instead. We saw more mohawks than crew cuts, more ironic t-shirts then suit coat jackets. It’s a town that thrives on individuality, and in this setting, the interactive community convenes for their flagship gathering, the South by Southwest (SXSW) Interactive festival .

Last year, we heard from our Federal colleague Andrew Wilson that leaders in the field are using new media to connect, collaborate, and engage in creative ways. Extracting a theme from this year's conference isn't easy for us. The web is continuing to expand exponentially. There are apps for phones, book publishers pushing content to Kindle, enhanced interactivity with HTML5 and CSS3 , more browsers, thousands of social networking communities, and hundreds of ways to actually deliver content to a targeted audience.

Increasing Access to Health Care for People Living With HIV: We Need Your Help

Georgina Verdugo, Director, Office for Civil Rights (OCR)

By Georgina Verdugo, Director, Office for Civil Rights (OCR), U.S. Department of Health and Human Services (HHS)

Earlier this week, OCR entered into a settlement agreement with the Windsor Rosewood Care Center, LLC (WRCC), a Contra Costa County, California nursing home, which agreed to provide individuals living with HIV equal access to its facility, as required by Federal law. This settlement resulted from a discrimination complaint initiated by a case manager who reported that two months before her client died, he was denied admission to the Contra Costa nursing home because he had AIDS. (When we use the term “living with HIV,” we mean both AIDS and HIV-positive status).

A few years ago, OCR entered into a similar settlement with the A.T. Associates nursing home chain in Alameda County, California. That settlement resulted from a discrimination complaint initiated by a hospital social worker who also reported that her client had been denied admission to a nursing home because he is HIV-positive.