Office of National AIDS Policy Blog

  • Let’s Make National Black HIV/AIDS Awareness Day a Day of Action

    February 7, 2010 marks the tenth annual National Black HIV/AIDS Awareness Day. 

    The Centers for Disease Control and Prevention estimates that there are 1.1 million people living with HIV in the United States (U.S.).   Despite representing 12% of the population, African Americans account for nearly half of all people living with HIV in the U.S. African Americans also account for a disproportionate number (46%) of the 56,000 new HIV cases that take place in the U.S. each year.  Black gay men and black heterosexual women comprise the second and third (respectively) largest number of new HIV infections across all racial groups in the U.S. each year.  HIV remains the number one killer of black women between the ages of 25 and 34, and CDC estimates that nearly half of all black gay men are infected with HIV in major metropolitan areas.  

    National Black HIV/AIDS Awareness Day is a chance to get more involved in getting the word out that HIV is preventable and treatable. With greater awareness about how the disease is spread and how to avoid risky behaviors, people can reduce their chance of infection. With appropriate treatment and medication, people living with HIV can live long and productive lives and manage their disease like other chronic illnesses.  That’s why it’s so important for everyone to get screened for HIV and to know their HIV status. 

    One important way that the President has shown his commitment to strengthening our national response to HIV/AIDS in America is through the White House Office of National AIDS Policy’s work in leading the development of a National HIV/AIDS Strategy.  The goals of the Strategy are to reduce new infections, increase access to care, and reduce HIV-related disparities.  Also, the President’s Budget request for FY 2011 includes $428 million for the Minority AIDS Initiative, an increase of $7 million, to address the disproportionate impact of the disease on minority communities.       

    National Black HIV/AIDS Awareness Day is a time to remember the men, women, and children who have been affected by the disease, and it’s a time to get more involved in ensuring that more people learn the facts about HIV/AIDS.  With better understanding, we can reduce the unnecessary stigma around the disease in African American communities, and people can feel better about taking action to know their status and get linked to appropriate care and treatment.  

    National Black HIV/AIDS Awareness Day is not only a time for remembrance, but a time for action.  If you are HIV-positive and not in care, take steps to learn how to get connected to care.  You can look online at www.aids.gov for federal resources and information that are available to you.  If you do not know your status and have not been tested recently, it’s easy to find information about where to get an HIV test.   Call1-800-CDC-INFORMATION, or send a text message to “KNOWIT” (566948) with your ZIP code to receive a list of HIV testing sites near you. 

    Adelle Simmons is a Policy Advisor in the Office of National AIDS Policy

  • ONAP Examines Linkages Between HIV and Housing

    The Office of National AIDS Policy (ONAP) has been traveling around the country holding a series of HIV/AIDS Community Discussions.  We just completed the fourteenth and final community meeting in Caguas, Puerto Rico.  One theme that many participants raised is the need to expand access to safe and affordable housing.  Over and over again, people made the connection between housing and HIV prevention, and between housing and effective HIV treatment.  Given these concerns, the role of housing will be a critical issue in the National HIV/AIDS Strategy (NHAS).

    Key questions include the following: Are the housing challenges facing people living with HIV/AIDS primarily a consequence of the nation’s broader housing issues, including the tightening of financial credit?  Are these challenges unique to persons with HIV/AIDS or do persons with other chronic diseases share similar experiences?  Given where we are now, what are the strategic steps we can take to make progress in expanding access to housing services? 

    To help answer these questions, ONAP held a meeting with key housing stakeholders last Thursday, December 17, 2009.

    During the HIV and Housing meeting, key Administration officials affirmed the President’s commitment to further explore the relationship between HIV and housing – and to strengthen services that support stable housing, which impacts people’s ability to access life-saving care and treatment.  Assistant Secretary of Housing and Urban Affairs (HUD) Mercedes Marquez detailed the steps HUD is taking to create a more responsive system that offers easier access, monitors results, and is efficient and accountable.  She outlined a more seamless approach to housing assistance service delivery not only within the framework of the HUD program, Housing Opportunity for People with AIDS (HOPWA), but with other programs accessible to people living with HIV/AIDS. 

    Derek Douglas, Special Assistant to the President for Urban Policy, and Adolfo Carrion, Director and Deputy Assistant to the President, Office of Urban Affairs, described how housing policy fits into a broader conversation that includes education, transportation, economic development and other services that impact people living with HIV/AIDS.  Charles King, President and CEO of Housing Works, an HIV/AIDS housing advocacy organization, pointed out the historic nature of this meeting – a meeting on HIV and Housing within the White House  and spoke of the opportunity to improve the lives of people with HIV/AIDS by ensuring access to housing.

    Participants then quickly got to work on developing a series of recommendations for the NHAS.   There were three issue specific breakout sessions - Housing as HIV Prevention and Care, Bringing Successful Strategies to Scale, and the Role of Housing in Systems of HIV Care – each led  by issue experts from community based organizations, academia, service providers, state legislators, and private industry. Draft recommendations were summarized during a report back period.  These recommendations will be revised during follow up conference calls. 

    On a personal note, I have seen the positive impact of housing in the lives of people with HIV/AIDS.  Prior to moving to Washington, DC, I directed an emergency shelter/hospice for HIV/AIDS patients in Puerto Rico.  A fair number of our patients, many of them John/Jane Doe’s, were the product of “patient dumping” where healthcare providers often discharged patients with little planning, often leaving them homeless and on the streets without care or anyone to look out for them because housing support was not available.  After a few months under our care (albeit palliative, end of life care), most achieved a far better quality of life before succumbing to their terminal illness.  And a few recovered and were placed in more permanent housing.  Our efforts  certainly testify to the strong restorative bond between accessible housing and HIV/AIDS prevention, treatment and care. 

    The HIV and Housing meeting was an exciting event that brought together impassioned advocates with leading government officials, both committed to finding common ground and providing meaningful guidance to ONAP and the NHAS effort.

    James Albino is the Senior Program Manager in the Office of National AIDS Policy

  • Passing the Senate Health Reform Bill: One Big Step Forward for People Living with HIV/AIDS

    More than most groups, people living with HIV/AIDS have a lot at stake in ensuring that Congress enacts comprehensive health insurance reform right away.   People living with HIV are more likely to be uninsured than other Americans.  They are more likely to receive substandard care from being underinsured or because of high cost-sharing and other barriers to quality care.  And, research tells us that uninsured people living with HIV are likely to learn their HIV status and come into care later than others…which means missed opportunities for protecting their health and missed opportunities for preventing the spread of HIV.

    Enacting comprehensive health reform as a means of expanding access to care for people living with HIV has been a top priority of the HIV community for many years. We have never been closer to achieving this significant milestone.  The House of Representatives has passed its bill, which does many important things to improve health insurance coverage for people living with HIV.   Two committees of the Senate have passed bills, and Majority Leader Reid has been working to craft a bill that can attain the needed 60 votes in the Senate.  Recently, some disheartened and passionate advocates have asserted that the Senate bill does not do enough and that it should not be enacted.   I believe an objective analysis of the current situation and the improvements in health coverage that will come about if the Senate bill were enacted demands that we forcefully counter this self-defeating perspective. 

    Don’t get me wrong…I understand the desire to push for more, but to quote President Clinton’s recent comments on this issue, “America can't afford to let the perfect be the enemy of the good.”  I fully understand the desire to ensure that the bill sent to the President does as much as possible to expand coverage, lower costs, and improve the quality of care.  Despite its critics, however, the Senate bill makes solid progress on all of these measures and the Senate’s vote on its bill is not the end of the process.  Advocates for people living with HIV can and should continue to push for provisions in the House bill that they support.  They can and should also push for technical changes that could clarify the intent of policies affecting people living with HIV.  Collectively, we must work to make the final legislation as protective of people with HIV as possible…while making sure that every step of the way we are moving forward and rejecting the arguments of those who want to keep things the way they are.  For people living with HIV, the status quo is the ultimate nightmare scenario.

    For years, the HIV community has called for expanding Medicaid as a strategy for expanding insurance coverage for people with HIV.  In particular, there has been recognition that the current disability standard for Medicaid and other public programs that keeps most people with HIV from becoming eligible for Medicaid until they have an AIDS diagnosis is a serious problem.  The Senate would expand Medicaid to all people up to 133% of poverty.   The importance of this single provisioncannot be overstated.  This is huge. 

    People living with HIV bear the burden of having a highly stigmatized disease and they regularly face discrimination simply on the basis of their health status.  They also are particularly vulnerable to pre-existing condition exclusions.  Several years ago, a former colleague, Karen Pollitz (a researcher at the Georgetown University Health Policy Institute) and others, did a study for the Kaiser Family Foundation where they constructed seven hypothetical applicants for individual insurance coverage in 8 insurance markets across the country.  In these markets, there were a total of 60 insurance options available.  One of the striking, but not surprising findings of their work was that the applicant with HIV was denied coverage every single time.  The Senate bill, along with the House bill, would outlaw this type of discrimination by eliminating pre-existing condition exclusions.
     
    People living with HIV are also especially cognizant of the barriers to care posed by unreasonable cost-sharing even when they have insurance.  On average, antiretroviral therapy costs between $12,000-$15,000 per person per year.  When we add in the cost of anticholesterol medications, anti-hypertensives, prophylactic drugs to prevent other infections, and other prescription medications, the average drug costs for people living with HIV rise even higher.  Even co-payments of $25 per prescription may seem reasonable to many people, but they become a bigger burden for people with HIV who may be filling ten prescriptions per month.  These same individuals may also face significant co-payment burdens from seeing multiple providers.  Reforms in the Senate and House bills will impose annual out-of-pocket caps, for the first time placing an upper limit on what individuals with high-cost chronic conditions will have to pay out-of-pocket.

    These are just some of the many very significant improvements that are within reach. We can see the light at the end of the tunnel.  While people living with HIV and their advocates should continue to advocate for the best policies, let’s not lose sight of the very major improvements in access to and quality of health care for people living with HIV that will be a reality when the President signs into law health reform legislation.  Now that we are this close to achieving our long sought goal of affordable coverage for people living with HIV/AIDS, we need to work as hard as we can to cross the finish line.

    Jeffrey S. Crowley is the Director of the Office of National AIDS Policy and Senior Advisor on Disability Policy

  • White House Holds Expert Meeting to Discuss Issues around Women and HIV

    On Tuesday, December 8, the Office of National AIDS Policy (ONAP) and the Council on Women and Girls co-hosted a Women and HIV Meeting at the White House.  The purpose of the meeting was to examine effective approaches to lowering HIV incidence in women, reducing racial disparities in infection rates and access to care, and improving services for women and girls living with HIV. 

    It was an insightful discussion on lessons learned specific to women and will help inform the development of the National HIV/AIDS Strategy (NHAS).  This Strategy has three primary goals:  reducing HIV incidence, increasing access to care and optimizing health outcomes, and reducing HIV-related health disparities. 

    Meeting attendees included representatives from organizations across the country, including national advocacy groups, service providers, state and county government, Federal agencies, and researchers. Women living with HIV were well represented. 

    After being welcomed by ONAP Director Jeffrey Crowley, the meeting participants heard remarks from Valerie Jarrett, Senior Advisor to the President and Chair of the White House Council on Women and Girls, and the new Surgeon General Regina Benjamin, M.D.  Both relayed their personal and professional commitment to strengthening our nation’s response to HIV/AIDS.  They also addressed why women must be a priority population in the NHAS because of the disease’s disproportionate impact on women.

    We had an excellent panel of presenters at the meeting, which covered racial/ethnic and gender disparities related to HIV/AIDS and gender-based and community-level prevention strategies.  Dr. Ada Adimora of the University of North Carolina at Chapel Hill described how social networks and factors like incarceration rates among Black men influence the risk of HIV infection among Black women.  Dawn Averitt Bridge of The Well Project proposed integrated approaches to HIV, STI, and reproductive health care and stressed the need for more research to identify effective interventions. 

    Following the presentations, a panel discussion addressed HIV and related civil rights issues, and noted how health insurance reform is critical for improving access to HIV care and treatment.  Comments from audience members highlighted that people living with HIV still face discrimination, and that there’s a need for increased availability of female-controlled prevention methods.  The stimulating discussion raised key issues for ONAP to consider in developing the NHAS – including the need for HIV education to help health professionals provide culturally sensitive care.

    Melody Barnes, Director of the White House Domestic Policy Council, made remarks about President Obama’s commitment to fighting the HIV/AIDS epidemic in the U.S.  And Tina Tchen, Director of the Office of Public Engagement and Executive Director of the White House Council on Women and Girls, provided closing remarks inviting future public engagement on HIV and related issues. 

    Bringing together a diverse group of experts to share ideas was a great way to help ONAP move ahead on developing a National HIV/AIDS Strategy that prioritizes women’s health issues.   We look forward to continuing the dialogue on this issue.  
       
    Adelle Simmons is a Policy Advisor in the White House Office of National AIDS Policy

  • Youth Leaders Advise White House on HIV/AIDS

    On Friday, December 4th, the Office of National AIDS Policy (ONAP) held a Youth and HIV/AIDS Meeting at the White House campus. Over 35 young people flew to Washington, DC to participate in our meeting. The meeting attendees were young people from all regions of the country and of diverse sexual orientation and gender identities. HIV positive youth were also well represented in the group.

    The meeting's purpose was to gather input on the development of the National HIV/AIDS Strategy (NHAS), which has three primary goals: reducing HIV incidence, increasing access to care and optimizing health outcomes, and reducing HIV-related health disparities.  The young people shared their wide range of ideas and experiences.

    Our meeting began with remarks by Heather Higginbottom, Deputy Assistant to the President and Deputy Director of the White House Domestic Policy Council, and Jeffrey Crowley, Director of the Office of National AIDS Policy. Heather and Jeff spoke about the Administration’s enthusiasm for youth engagement and the importance of the NHAS.

    Meeting participants then participated in several presentations by issue experts and youth leaders that provided context on youth and HIV in America.

    Our participants then broke out into three small discussion groups focusing on the primary goals of the NHAS: prevention, communication, and youth engagement; challenges and barriers to care, treatment, and adherence that are particular to youth; and population-specific challenges that contribute to disparities in delivery of care. These discussions lasted for 80 minutes, at the end of which each group came back with three to five top-line goals to achieve or problems to solve in their topic area.

    Kalpen Modi from the White House Office of Public Engagement closed the meeting with remarks about President Obama’s commitment to youth and youth-related issues.

    The Youth and HIV/AIDS meeting went extremely well, as we heard many great suggestions throughout the three hours. For example, attendees suggested that there should be a national youth campaign promoting HIV testing. Meeting participants also mentioned the importance of developing and enhancing youth-friendly care. It was both exciting and inspiring to see so much passion and enthusiasm from the youth leaders who joined us last Friday. As we move ahead, we know that this meeting will help us to ensure that the NHAS meets the needs of young people across the United States.

    Natalie Pojman is an  Executive Assistant for the Office of National AIDS Policy

  • Gearing up for 2012 International AIDS Conference

    Download Video: mp4 (414MB)

    I was very pleased to join Secretary of State Hillary Rodham Clinton, Secretary of Health and Human Services Kathleen Sebelius, the President’s Senior Advisor Valerie Jarrett, ONAP Director Jeffrey Crowley, and Dr. Elly Katabira, President-elect of the International AIDS Society at the White House today for an event on the eve of World AIDS Day 2009.   World AIDS Day is an occasion to reflect on how far we have come in the fight against this epidemic, but also to remind ourselves of the important work we have yet to do in preventing and treating HIV.  

    This year marks my first World AIDS Day as the U.S. Global AIDS Coordinator, although I have been working on HIV/AIDS issues for more than 25 years.  In addition to my work treating persons living with HIV and AIDS, I have held various roles in and outside of government working to respond to HIV/AIDS in the U.S. and around the world.  I was deeply humbled when the President appointed me to serve as the Global AIDS Coordinator.  We are just getting started, but President Obama has demonstrated solid leadership on domestic and global HIV/AIDS issues, and it is an exciting time to be a part of his team.

    At today’s event, Secretary Clinton announced that the 2012 International AIDS Conference will be held in Washington, DC.  This momentous event is made possible by the Administration’s recent lifting of the entry ban for HIV-positive travelers to the United States. The full removal of the ban takes effect on January 4, 2010.  This entry ban was originally placed into effect in 1987 when there was little information on how HIV is spread, and was then codified by Congress.  Even after scientists had long proved that HIV/AIDS was not spread through casual contact with a person living with HIV, the entry ban remained in place.  Only a handful of countries worldwide prohibit HIV-positive travelers from crossing their borders, and the United States has been the only Western country to uphold this discriminatory policy.  Last year, Congress finally repealed the law mandating the travel ban, and the Obama Administration was able to remove the remaining regulatory barriers.

    Hosting the International AIDS Conference in the United States is an important opportunity for the United States. This event draws scientists, policy makers, program officials, HIV-positive individuals and others from all over the world.  As the largest conference of its type, the International AIDS Conference attracts more than 25,000 participants and over 3,000 members of the media.  Welcoming conference attendees to our Nation’s capital will allow America to demonstrate our ongoing commitment to ending the HIV pandemic both in the United States and around the world.  Given that the conference is fundamentally a research conference, holding this event in such close proximity to the National Institutes of Health and other U.S. Government research facilities will also, hopefully, expand the level of scientific discourse between our scientists and researchers from around the world.
     
    Hosting the conference in the United States will also enable us to showcase our efforts to respond to our domestic HIV/AIDS epidemic.  By 2012, the U.S. will have a National HIV/AIDS Strategy in place for the first time in our nation’s history.  We expect to have made new strides by then to better coordinate HIV prevention and care services across the U.S. Government, as well as to reduce HIV/AIDS disparities.  In addition, the conference will allow us to spotlight our ongoing and continued commitment to the U.S. President's Emergency Plan for AIDS Relief (PEPFAR) and the President’s Global Health Initiative.  

    World AIDS Day is an important day to pause and reflect.  It is also an important day to look forward with renewed optimism and vigor.  Today’s announcement by Secretary Clinton is a sign of renewed commitment that gives us all hope as we move forward in the fight against HIV/AIDS and confront the many challenges ahead.

    Eric P. Goosby, MD is the United States Ambassador at Large and Global AIDS Coordinator