Office of National AIDS Policy Blog
- Posted byon November 1, 2010 at 6:06 PM EDT
Over 1 million Americans are living with HIV and the number is growing. Advances in medication have not only increased the lifespan for people living with HIV, but also the quality of our lives. Despite this good news, it has also brought new challenges that were not anticipated back when being diagnosed with HIV carried a prognosis of a much shorter lifespan. One of the most surprising aspects of the domestic HIV epidemic is the number of people aging with HIV. Earlier this year, New York City’s Department of Health and Mental Hygiene reported that 75% people living with HIV in the city were 40 years old or older and 37% were 50 years of age and older. This phenomenon is not just taking place in New York City—similar demographic trends are being observed nationally. According to experts at Yale Medical school, is estimated that 50% of people living with HIV in the US will be 50 years old or more by 2017. Moreover, 31% of new HIV infections in the United States each year occur among those between the ages of 40 and 49 and 7% of new infections occur among those 50 years old and older.
This week the White House Office of National AIDS Policy convened a meeting on HIV and aging to discuss these demographic trends. The purpose of the meeting was to raise awareness about people who are aging with HIV or contracting HIV as seniors (>50 years of age); to explore unique clinical manifestations of HIV infection among older adults; to discuss existing services for seniors living with HIV and highlight successes as well as gaps; and to discuss targeted strategies for Federal and non-Federal stakeholders to realize the vision of the President’s National HIV/AIDS Strategy. The meeting was part of a series of discussions that have been convened at the White House over the past year, including meetings that have focused on women, youth, Latinos and other populations.
The White House HIV and aging meeting agenda included an epidemiological and clinical overview of older Americans (age 50 or older) by Dr. Amy Justice of Yale School of Medicine. Dr. Justice discussed findings from various research studies and the complications of managing a chronic infection and the commorbid conditions related to the aging process. This was followed by a panel discussion of people of various demographic backgrounds who are aging with HIV, and complemented by a video clip from ABC’s popular television series Brothers & Sisters where executive producer David Marshall Grant and actor Ron Rifkin discussed the storyline behind a major character on the show who is a senior and diagnosed with HIV.
A panel of Federal officials provided information on prevention, care, research, disability, legal and workforce issues related to people aging with HIV; and a final community panel further explored these issues at the local level. A highlight of the meeting included recognizing Dr. Robert Franke, a retired university provost and Unitarian Universalist minister who is living with HIV and who recently won a discrimination lawsuit against a Arkansas nursing home.
The meeting ended with a clear message that older age is not a safety net that protects people from getting HIV and that people are living with HIV for decades. It was also clear that the many issues surrounding HIV among older adults will only increase as our country faces the continuing graying of our nation’s HIV epidemic.
- Posted byon October 15, 2010 at 9:00 AM EDT
On this National Latino AIDS Awareness Day, October 15, 2010, the leadership of the Hispanic/Latino HIV/AIDS community is assembling an impressive national grassroots network of community based organization and HIV/AIDS services providers to focus attention on the many challenges related to HIV prevention, testing, and treatment facing the Hispanic/Latino community. This year’s awareness day theme “Save a Life, it may be your own” speaks to the deadly turn HIV/AIDS has taken in the community. With Latino’s generally testing very late, at times only months away from developing an AIDS diagnosis, the leadership has mobilized the community around an effort to increase testing and prevention efforts.
This effort is consistent with the recommendations of the National HIV/AIDS Strategy which is to focus efforts on communities disproportionately affected by the epidemic. Recently, the Office of National HIV/AIDS Policy (ONAP) convened Latino leaders, including some NLAAD members and Federal partners in the White House to discuss how they are implementing the strategy at the community level (please take a moment to see the video.
Latinos are more likely to contract HIV than Whites. According to the CDC, the rate of new AIDS diagnoses among Latino men is three times that of White men, and the rate among Latinas is five times that of White women. Even though HIV-related mortality has been declining since effective medications have become available, Black and Latino Americans are more likely than White Americans to die earlier from AIDS. In part, this is due to lack of access to treatment. HIV-positive Latinas are less likely to access therapy compared to HIV-positive men; and access to care and supportive services is particularly difficult for HIV-positive persons in emerging communities in rural areas, as well as other underserved communities.
Established in 2003, NLAAD is one of the nation’s largest and broadest reaching community level awareness campaigns focused on by promoting HIV testing opportunities, connecting people to care and enhancing HIV/AIDS awareness among Hispanics. During the Hispanic Heritage month (September 15 – October 15) over 420 NLAAD eventswill be held throughout the United States, the US territories and Puerto Rico.
Please join the ONAP and our network of community-based organizations and service providers in helping raise awareness across the country of the prevention, testing and treatment needs of our Hispanic/Latino community.
ONAP Commissions Institute of Medicine to Examine Data Gaps in Monitoring Access and Quality of HIV CarePosted byon October 4, 2010 at 10:20 AM EDT
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 Affordable Care Act (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.
Jeffrey S. Crowley is the Director of the Office of National AIDS Policy
Gregorio Millett is the Senior Policy Advisor in the Office of National AIDS Policy
- Posted byon October 1, 2010 at 2:18 PM EDT
Earlier this month, HHS Secretary Kathleen Sebelius announced two grants totaling more than $3.5 million to reach beyond the Ryan White Program– the federally funded program that provides care and treatment to about half a million Americans living with HIV/AIDS – and provide expanded care and treatment for minority patients that have been impacted by the disease.
The first three-year grant, funded by the Health Resources and Services Administration (HRSA), will provide $2.975 million to HealthHIV, based in Washington, DC, to improve and enhance the organizational capacity of community health centers across the nation to provide culturally competent, compassionate, high-quality, and life sustaining HIV care and treatment to racial and ethnic minorities living with or affected by HIV/AIDS. The grant will support a new AIDS Education and Training Center (AETC) National Center for Expansion of HIV CARE in Minority Communities.
HRSA supports a nationwide network of more than 7,900 health centers. These centers provide quality primary care to almost 19 million medically underserved people – about 40 percent of them have no health insurance. Everyone who enters the door is served; no one is ever turned away. These health centers represent one of the nation's best primary health care delivery models. With the passage of the Affordable Care Act, health centers received a tremendous boost. The Act provides $11 billion over the next five years for the operation, expansion and construction of health centers throughout the nation. This will create the largest expansion of community health centers in the program's history and make it possible to nearly double the number of patients they serve. To find a health center near you, use this locator.
The second grant was awarded to Howard University, a historically Black college located in Washington, DC. The three-year grant of $550,000 establishes the AETC National Multicultural Center. The Center will provide training and technical assistance designed to increase cross-cultural awareness and competency among health care professionals and facilities serving the needs of people living with HIV/AIDS.
“These grants will support the President’s National HIV/AIDS Strategy by expanding capacity at the community level, facilitating linkages to care and increasing the available providers to serve people living with HIV,” said HHS Secretary Kathleen Sebelius.
HRSA Administrator Mary Wakefield said, “Expansion of health center services will increase HIV screening and help reach and provide care for the estimated 220,000 people nationwide who are unaware that they’ve been exposed to the virus.”
- Posted byon September 27, 2010 at 9:54 AM EDT
Today is National Gay Men’s HIV/AIDS Awareness Day. For me, every day is an “awareness day” about HIV/AIDS. I feel it is important for me to talk about it, because I am increasingly concerned that many in the LGBT community don’t. I am worried about the kids out there and the generation that hasn’t seen the devastating impact of this epidemic the way my generation has. Now more than ever we need to be talking about HIV/AIDS. Just a few days ago The Centers for Disease Control and Prevention (CDC) published new heartbreaking data showing that one in five gay and bisexual men in 21 major US cities are living with HIV. I am one of those men. I have been living with HIV since 2001.
- Posted byon September 20, 2010 at 2:40 PM EDT
Now that the National HIV/AIDS Strategy has been released and the lead Federal agencies are working on preparing their report to the President before the December 9th due date, the ONAP team has switched focus on assessing the implementation of the National HIV/AIDS strategy at all levels. Of course, at the Federal level Secretary Sebelius and her very capable team are primarily responsible for bring all of this together. Working with our Federal partners ONAP is taking a cross sectional look at how the implementation process is moving along, especially at the community level.
Shortly after the release of the strategy I had an opportunity to travel to southern Arizona where I met with several community based organizations, local county health officials and service providers as well as individual living with HIV/AIDS. Border Health has been issue that I have been particularly interested in. I was struck by two things; first, the level of enthusiasm and commitment by many individuals at the local level with respect to the strategy. Several of the individuals that I talked to have been working in the HIV/AIDS field for many years. They have waited a long time to get clear, direct and committed guidance on how to fight this epidemic from the highest level of our government, and were anxious to get started.
"We just completed our five year plan, here" said Wendell Hicks, executive director of the Southern Arizona AIDS Foundation, an organizations whose mission is to provide compassionate medical care to people with HIV and, and to help prevent the spread of HIV through education and testing. He continued; "with the strategy, we will now go back and see where we can realign our goals and objectives to match those of the strategy." In a follow up conversation, several Southern Arizona Health leaders committed to developing a local strategy using the national strategy as a template. I am looking forward to returning to Southern Arizona in a year's time to see what they have come up with.
I was also struck by the enthusiasm of many of the "promotoras" (Spanish for field health services navigators or outreach workers) that go out and engage the community to get tested and seek or stay in care. Their enthusiasm for the work they do and the gratitude for the guidance that the strategy provides was contagious. One young "promotora," a volunteer mother of two, whose son is HIV positive, commented that she had been encouraging individuals in her community to talk about HIV and get tested for over ten years. She was happy that the strategy reinforced and supported her work.
I had a similar experience in Philadelphia, Pa. where The Black AIDS Institute, the National Black Leadership Commission on AIDS, BABASH and other local organizations hosted a discussion to discuss elements of the strategy. There, several community leaders were encouraged that the strategy addressed many of the issues that impacted their local communities. Several leaders, especially local health officials committed to going back to their own strategic plans and fine tune them so that they better align with the national strategy. I committed to support their efforts and arranged for copies of the my presentation and the strategy to be available for the next meeting. In total the group expects to conduct 11 such gathering nationwide.
We will continue to engage the local community and encourage them to read the strategy and to explore ways to implement it in their local setting. We anticipate that the reports due back from the various lead Federal agencies, especially HHS will provide the community greater specificity. Moving forward, we will soon (September 23, 1pm) host a meeting here in the White House with Federal, state and local stakeholders in the Latino Community to explore how they are implementing the strategy in their communities. Separately, we are working with Faith leaders to develop a tool kit that they may use to highlight the goals and measures of the strategy during upcoming World AIDS Day (December 1) events.
I am encouraged that as more and more community leaders read, study and learn of the goals and measures of the strategy they will begin to explore ways of implementing it in their organizations.
James Albino is a Senior Program Manager in the Office of National AIDS Policy (ONAP)
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