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YOUR INPUT IS NEEDED!
While Monday, November 23 was the official last chance to submit testimony and recommendations to the White House Office of National AIDS Policy (ONAP), the White House is now accepting emailed recommendations. DECEMBER 7 IS NOW THE LAST DAY TO PROVIDE TESTIMONY! Make sure your recommendations are included in the National AIDS Strategy! The Obama Administration is looking for input on three key areas:
- Reducing new HIV infections
- Getting all HIV-positive people into appropriate care and treatment
- Reducing HIV/AIDS-related health disparities based on sexual orientation, race or gender.
The White House Hears Key Testimony from the Asian & Pacific Islander Community
During the United States Conference on AIDS, representatives from Asian & Pacific Islander HIV/AIDS organizations from around the country met with James Albino and Jeff Millett of the White House Office of National AIDS Policy (ONAP). During this special two-hour meeting, community members laid out specific recommendations to include the needs of A&PIs nationally in the upcoming National AIDS Strategy.
While the National AIDS Strategy is a new and unique opportunity to provide input in how the nation will fight HIV and AIDS in the future, some of the recommendations have been around as long as twenty years—nearly as long as the epidemic itself. Data disaggregation is especially important, since often times A&PIs are lumped in to the “Other” category. This masks the epidemic in our community and prevents A&PIs from making a stronger case for HIV prevention and services for the community.
Lance Toma, Executive Director of A&PI Wellness Center and Ed Tepporn of Asian & Pacific Islander American Health Forum facilitated the meeting and presented a 13-point recommendation document to ONAP. The recommendation document covers five key areas: Data collection and culturally competent research; interventions and services; HIV-related stigma; infrastructure and resources; and, meaningful inclusion and involvement in the National AIDS Strategy.
Highlighting the need for improved data and research was A&PI Wellness Center board member and Assistant Professor of Medicine at UCSF, Dr. Tri Do. Dr. Do outlined the lack of data about HIV/AIDS and A&PIs at the national level due to exclusion of some state data, including California and Illinois. The group asked that the Strategy require that federal agencies conform to the Office of Management and Budget's reporting guidelines while increasing diversification of HIV research across agencies.
Elizabeth Mediano of the Asian Pacific AIDS Intervention Team in Los Angeles spoke about her HIV intervention work, and the difficulties that come with it. Currently, CDC sanctions only one evidence-based intervention for A&PIs lending to these difficulties. Also difficult is reaching limited English proficient A&PIs. The group asked that ONAP consider including more linguistic competencies to HIV prevention and care services.
The group also recommends that the Strategy include interventions focused on reducing HIV-related stigma. Speaking on the topic of stigma was Henry Ocampo, who powerfully described the silence around reproductive health in the A&PI community, and the stigma and shame that people living with HIV/AIDS face from their families, as well as the broader LGBT community.
Joining the group by phone were Ronald Sy of AIDS Services In Asian Communities in Philadelphia, PA and Paul Groesbeck of Life Foundation in Honolulu, HI. They emphasized how dwindling resources have been impacting the work that they do, making it more difficult to reach A&PIs in their areas. Johnny Hebel of the Department of Public Health in the Federated States of Micronesia spoke about the difficulties in reaching a population that is highly dispersed. The group asked the White House to help strengthen the infrastructure of community based organizations, as well as improve contact with the Pacific Island Jurisdictions to both understand the challenges of HIV prevention, testing and care in the region, as well as bolster services.
Suki Terada Ports of the Family Health Project, New York, NY and Lina Sheth from A&PI Wellness Center closed the meeting with a request that A&PIs be included in the process moving forward. They asked that A&PIs be shown in all data and charts, and not lumped into the “others” category, as well as being included on any Presidential Advisory Council on HIV/AIDS, as well as across any federal departments working on HIV/AIDS.
Providing Input, Listening to Our Voices: The National AIDS Strategy
Lance Toma provides testimony to the Office of AIDS Staff. Left to right, Greg Millett, James Albino, and Jeffrey Crowley.
Nearly 200 community members, HIV/AIDS workers and advocates attended the recent National AIDS Strategy Community Meeting on Friday, October 16. Friday’s testimony was heard by Jeffrey Crowley, White House Director of the Office of National AIDS Policy, Greg Millett, ONAP Senior Policy Advisor, and James Albino, ONAP Senior Program Manager.
Jane Dalugdugan speaks at the National AIDS Strategy Community Meeting.
The Obama Administration is committed to developing a national strategy to coordinate a better response domestically to HIV/AIDS epidemic. Input on the strategy focused on three key areas: Reducing new HIV infections, getting all HIV-positive people into appropriate care and treatment, and reducing HIV/AIDS-related health disparities based on sexual orientation, race or gender.
Over 20 clients and staff from Asian & Pacific Islander Wellness Center were on hand to provide their testimony, both personal and professional. Several clients identified that services continue to be cut and the need to increase community involvement across the board to increase HIV testing rates among A&PIs, as well as help reduce stigma in the community.
Executive Director Lance Toma testified on the needs of community based organizations that primarily serve communities of color: “Over the past few years, I have witnessed the infrastructure of minority HIV CBOs in rapid decline, those who are imbedded in the very heart of our communities. The minority HIV CBO infrastructure must be supported and strengthened as part of the NAS.”
Lance continued, “Health data on race and ethnicity must be collected uniformly throughout the US. To date, 1/3 of all states have yet to break out A&PIs as a separate category. Until this happens, we will never know the true extent of the HIV epidemic in our communities. The National AIDS Strategy must bridge prevention & care, and it must be inclusive of structural level interventions, particularly focusing on stigma as it relates to HIV and communities of color. Toward this end, federal agencies must work more closely so that funding flows in a more integrative manner.”
Additional comments ranged from how to improve the process of creating a National AIDS Strategy, increasing treatment adherence, the stigma surrounding testing, and transgender issues. We’ve posted full testimonies below that we hope you’ll read. More testimonies will be added in the coming days! To view a recording of the meeting or to submit your own testimony, visit the ONAP website.
Over the past few years, I have witnessed the infrastructure of minority HIV CBOs in rapid decline, those who are imbedded in the very heart of our communities. We need these CBOs to be providing the comprehensive and integrated services they have been providing for years. The minority HIV CBO infrastructure must be supported and strengthened as part of the NAS.
Health data on race & ethnicity must be collected uniformly throughout the US, according to OMB standards and this too must be included in the NAS. To date, 1/3 of all states have yet to break out A&PIs as a separate category. Until this happens, we will never know the true extent of the HIV epidemic in our communities.
A comprehensive and integrated intervention design is critical, taking into account social determinants of health. It must bridge prevention & care, and it must be inclusive of structural level interventions, particularly focusing on stigma as it relates to HIV and communities of color. Toward this end, federal agencies must work more closely so that funding flows in a more integrative manner. This will no doubt also be cost-effective over time.
—Lance Toma, Executive Director
I am a gay Filipino-American who has been working in the HIV prevention field for 3 years. From a national perspective, Asian & Pacific-Islander needs get lost and ignored in the discussion of HIV risk. But here in San Francisco, we know that Asian & Pacific-Islanders are a rapidly growing population and HIV infections are increasing at an alarming rate.
Earlier this year a friend of mine found out he was HIV positive. His face is not the one that is portrayed on a national level when it comes to HIV. He is young, Asian, well-educated and middle class. His story is by no means unique or rare. I am afraid that individuals like him do not realize just how prevalent HIV is and do not acknowledge the extent to which HIV can transcend race and class.
We need more funding towards culturally and linguistically competent social marketing and outreach services. Services targeting A&PIs are very scarce and efforts to educate this community and to distribute safer sex materials are poorly funded. If A&PIs were more aware of HIV's prevalence and were better equipped with tools to reduce their risk I feel that HIV infections would decrease significantly. Thank you.
—Lance Dwyer, Youth Program Specialist
I am a gay Chinese American man working in a HIV testing clinic, primarily targeting Asian & Pacific Islanders. I understand the importance of HIV testing. A&PIs are still the least likely group of color to test for HIV. Similarly, 1/3 of those positive in the A&PI community don’t even know their status.
So if the objective is to reduce new infection incidence, then we need to cast a bigger net and test all those at risk. Anecdotally, I’m learning from my clients as to the challenges to testing is largely the stigma surrounding getting tested, and the shame that comes with it.
My recommendation is for the CDC to develop effective interventions and community models that specifically address the issue of the stigma around HIV, reducing the shame of getting tested, and normalizing HIV into everyday dialogue. Effectively, as more A&PIs get tested, knowing your status in itself becomes a prevention strategy to curb further infection. Thank you.
—Kevin Shi, Testing Program Specialist
I am a Filipina woman living in San Francisco, and I managed the California Statewide Treatment Education Program.
My concern is about achieving better health outcomes for people living with HIV/AIDS and reducing HIV incidence, particularly for communities of color. People of color are less likely to access care services, less likely to be on optimal treatment regimens, and continue to have significantly poorer clinical outcomes.
I recommend the government support interventions that increase early testing, diagnosis and linkages to care, as transmission occurs primarily in early infection. We should also support interventions that decrease community viral load. Treatment adherence is HIV prevention.
The government must recognize that early testing, linkages to care services and optimal treatment reduces HIV incidence, HIV-related health complications, and is cost effective. The government is responsible for working with community partners to develop culturally competent interventions and materials, funding these projects, and coordinating this work with local public health and other entities.
—Jane Dalugdugan, Community Development Program Manager
I’m a South Asian female working for a community-based organization that provides HIV services to Asians & Pacific Islanders. I would like to speak about the process of creating the National AIDS Strategy.
While we are grateful for the opportunity for community input into the initial development of the National AIDS Strategy, my concern is that this will not continue through the life of the development of the strategy.
I recommend the Strategy include mechanisms for ongoing community input, so that the strategy is adaptive and incorporates and pays attention to new and emerging trends and communities (such as A&PIs) in the epidemic.
The community must be also be involved in establishing evaluation measures and targets for the strategy, and this must incorporate and value both quantitative and qualitative data. This is critical, so that the successes and richness of our interventions and the impact in our communities are measured, valued, and sufficiently resourced.
The federal government is responsible for working with community partners to develop an evaluation methodology and resourcing the implementation of these methods appropriately.
—Sapna Mysoor, CBA Specialist
My name is Sara. I am heterosexual, and living with HIV. I was diagnosed positive right after graduating college.
I appreciate ONAP and the Obama Administration’s outreach to the community in developing a National AIDS Strategy. As part of the strategy, I would like to see a larger focus on HIV education in schools as part of prevention. Curriculum focusing on the contraction of the virus and its biological effects should be integrated into sex education, biology and social studies. Awareness of HIV cannot be overdone with today’s youth. We should start with elementary school with sex education and continue on through college.
—Sara Kunitake, Development & Events Coordinator
For more information, visit:
www.nationalaidsstrategy.org
http://www.whitehouse.gov/administration/eop/onap/
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