AIDS United Convenes Congressional Roundtables Addressing HIV in the South

June 22, 2012 in Policy/Advocacy

by Charles Stephens, Regional Organizer, South

It started with a bus tour through Alabama in March. AIDS United invited a group of stakeholders along with our partners in the state to witness firsthand the impact of the HIV epidemic in the South. As they listened to heartbreaking story after heartbreaking story, from service providers to advocates, the charge as well as the mission became clear. The faces and personal stories provided not only a sharper lens but a deeper context to understand the effects of HIV/AIDS on the region. And though there has already been considerable work and investment in the South by many groups, the size of the challenge reminds us exactly how much is left to be done.

On Tuesday, June 19th, AIDS United convened two bipartisan Congressional roundtables: one for House members and staff hosted by Representatives Hank Johnson, a Democrat from Georgia, and Ileana Ros-Lehtinen, a Republican from Florida. Representatives Barbara Lee (D-CA) and. Shelia Jackson Lee (D-TX) also attended.  Senators Jeff Sessions, a Republican from Alabama, and Kay Hagen, a Democrat from North Carolina, hosted the roundtable for Senators and staff.

The group spent the morning and afternoon engaged in intense discussions around the drivers of the HIV epidemic in the South and innovative solutions. One of the challenges discussed included stigma, stunningly illustrated by one of the speakers, Dr. Laurie Dill, Medical Director of Medical AIDS Outreach in Alabama. Dr. Dill shared a story about how some of her HIV-positive clients have been forced to eat off of paper plates rather than use regular dishes at family gatherings.

The gap in resources to fight the epidemic in the South also came up frequently during the discussion. Kathy Hiers, Executive Director of AIDS Alabama, expressed that “We’ve got to move the dollars where people with HIV are in need.”  The impact of HIV among women was referenced throughout the roundtables. Sexism and domestic violence are thought to be part of the driving forces of the epidemic in the region.

Other challenges in the South include poverty, racism, rural challenges, poor education, homophobia and health infrastructure challenges. Late diagnosis is a significant challenge. The later someone is diagnosed, the more expensive and difficult it is to treat them.

Though the challenges of HIV in the South cannot be overstated, and there was considerable time spent discussing them, the group was diligent in offering innovative solutions. As Senator Kay Hagan stated in the meeting, “We’ve got to invest in innovation.”  Approaches that were highlighted include: A telemedicine program in Alabama funded by AIDS United, where doctors, nurses, and other clinicians are able to communicate with patients virtually, while being physically located in different spaces. This is critical because transportation is often a barrier to accessing care for people in Alabama.  Another innovative approach echoed through the discussions was the importance of public/private partnerships as an instrument of innovation.

Ronald Johnson, Vice President of Policy for AIDS United, provided insight on how we can build on the Congressional roundtables and advance the work moving forward. In particular, AIDS United has suggested that new research be performed to get improved metrics and other indicators that can provide a better picture of the severity of the epidemic in the South and on the social drivers of the epidemic.  Such research could become an important tool for policy development.  Mr. Johnson also stressed the critical value of public/private partnerships and how an AIDS free generation is within our grasp.

Senate Appropriations Committee Approves HIV Funding

June 15, 2012 in Policy/Advocacy

by Bill McColl, Director of Political Affairs

In relatively short order this week, the Senate Subcommittees on Labor, Health and Human Services, Education and Related Agencies and on Financial Services and General Government passed their Fiscal Year (FY) 2013 bills followed quickly by votes at the Full Committee level.  The next step for the bills would be to go to a vote on the floor of the Senate and then on to conference with the House, steps that are unlikely to be taken prior to the November election.

The Labor, HHS bill is the appropriations bill that is the largest source of HIV/AIDS treatment and prevention programs. The Committee voted 16-14 to approve the bill which contained a significant increase for the AIDS Drug Assistance Program (ADAP) of $30 million.  The increase is actually $65 million over the original FY 2012 baseline and includes an extra $35 million directed towards ADAP that the President had announced on World AIDS Day, December 1, 2011.  The other Parts of the Ryan White Program remained level-funded.  The amounts designated for the Ryan White Program are as follows:

  • Part A (56 grants towards cities and surrounding areas) – $671.3 Million
  • Part B (States, Territories and the District) – $422.3 Million
  • Part B ADAP – $963.3 Million
  • Part C (Direct grants to HIV clinics) – $215.1 Million
  • Part D (Families, Youth and Children) – $77.2 Million
  • Part F (AIDS Education and Training Centers) – $34.5 Million
  • Part F (Dental) – $13.5 Million
  • Part F (Special Projects of National Significance – SPNS) – $25 Million

Part C’s funding is $10 million above the original FY 2012 baseline, accounting for 2/3 of an increase to that program announced by the President on World AIDS Day.  An additional $5 million that has been designated for Part C providers through the Community Health Center (CHC) program will need to be designated through that program again to maintain the same amount of actual funding.  The funding for Part D remained the same, despite a decrease of nearly $7 million in President Obama’s budget.

Funding for HIV prevention also appeared to be flat funded at a rate of $786.2 million although overall funding for the Centers for Disease Control and Prevention (CDC) was up $55 million.  There was an increase of $2 million for

Prevention advocates were relieved that no funding was included for abstinence-only-until-marriage programs, which have been shown to be ineffective, and that $22 million in unspent Title V abstinence-only funding had been rescinded. Advocates expressed disappointment that the Committee failed to redirect the rescinded funding towards evidence-based pregnancy prevention efforts for foster care youth. The Teen Pregnancy Prevention Initiative (TPPI), which provides funding for programs that reduce teen pregnancy and related risk behaviors, was level-funded at $105 million. Thirty million dollars was provided for the Division of Adolescent and School Health (DASH) at the Centers for Disease Control and Prevention (CDC), which is level funding from FY 2012 but down $10 million from FY 2011.

The bill also returned language that would allow for federal funding for syringe exchange programs as long as a local public health or law enforcement authority does not object to a specific site. This language had been included in the FY 2009 and 2010 budgets but the overall bill for FY 2012 had restored the federal ban on the use of federal funds for syringe exchange programs. The restoration of the ban was a move strongly opposed by most HIV/AIDS, public health, harm reduction and viral hepatitis organizations. The 2013 Financial Services appropriations bill, which contains the budget for Washington D.C., also contained the restored syringe exchange language and specifically excluded Washington D.C. from its application, allowing the District to continue funding syringe exchange with its own local funding.

Other measures of interest in the Labor, HHS budget included an additional $100 million to the National Institutes of Health, although it was not clear if the additional funds would directly go to HIV research. The committee also agreed to increase funding by $547 million for the Centers for Medicare and Medicaid Services, an increase that is expected to help with Affordable Care Act (health care reform) implementation issues. Community Health Centers (CHCs) received an increase of $300 million to their total budget as well (including mandatory funding in the health reform law)

The Social Innovation Fund, which provides match grant funding for AIDS United’s Access to Care program, was level-funded at $45 million for FY 2013. Funding for Americorps was set at 346.4 million. Although this amount is $2 million above FY 2012, it includes a disability grants program which had previously been separate so in reality this is also flat funding).

The Financial Services bill did not include the President’s proposed one percent transfer of domestic HIV/AIDS spending within the Department of Health and Human Services to support the implementation of the National HIV/AIDS Strategy.  Additionally, a $1.4 million set aside for the Office of National AIDS Policy (part of the White House Domestic Policy Council) was not included. Finally, the full committee also refused an amendment to defund IRS spending on the health care law, also in the Financial Services bill.

Click here to see the FY 13 appropriations for federal HIV/AIDS programs chart, produced by the AIDS Budget and Appropriations Coalition, which gives an overview of the above-mentioned numbers and is expected to be updated shortly.

The AIDS United Organizing Team Gears Up for Elections 2012

June 7, 2012 in Policy/Advocacy

by Charles Stephens, AIDS United Southern Regional Organizer

This year’s elections will perhaps be the most critical for the HIV/AIDS community in recent memory. Our entire public health landscape is shifting, and has the potential to move our county toward greater health access and parity — or further away. Much of this will be determined at the polls. The people we vote into office will be faced with issues ranging from the Affordable Care Act and women’s access to reproductive health care to HIV criminalization laws, and the social safety net programs put in place to protect the most vulnerable.

To help communities “get out the vote,” AIDS United’s organizing team has launched a voter mobilization initiative. This initiative consists of a webinar series, in-person trainings around the country and a voter mobilization tool kit. To kick off our initiative this week, I presented on “HIV/AIDS Issues and the 2012 Elections: Strategies for Engagement” at the Statewide HIV/AIDS Advocacy Conference in North Carolina. The conference was a collaborative event between two of AIDS United’s grantees: The North Carolina AIDS Action Network (NCAAN) and the North Carolina Harm Reduction Coalition (NCHRC). Many of our grantees and partners in the state were present, and participants had the opportunity to attend workshops and meet with their legislators.

Some of the topics I covered during the presentation included: what’s at stake in 2012, voter engagement best practices, strategies to bring attention to HIV/AIDS issues to elected officials and candidates, and an overview of our voter mobilization toolkit.

On June 6, AIDS United hosted a webinar entitled “Mobilizing the HIV/AIDS Community for the 2012 Elections.” In addition to sharing strategies around voter engagement and mobilization, we highlighted the new toolkit, and  featured brief presentations by two of our partners: Nic Carlisle from AIDS Alabama and Sarah Sobel from the Ohio AIDS Coalition. Both spoke about what their organizations are doing to get out the vote for this year’s elections.

Our next webinar in our voter mobilization series is on voter suppression and will be June 27 More information for this webinar will be available here in the Policy Update in the next two weeks. Meanwhile, to learn more about our voter mobilization efforts, or if you would like to find out how you can get involved, please contact us.

Why This Election Matters To Women Living with and Affected by HIV/AIDS

June 1, 2012 in Policy/Advocacy

by Tinselyn Simms-Hall, Policy & Advocacy Coordinator, The Women’s Collective

The 2012 presidential election is significant for The Women’s Collective because it has implications for the sexual and reproductive health rights of women; for the access and quality of care and support for women and girls living with and at-risk for HIV/AIDS; and for the overall presence, voice, and leadership of women-and women of color-on issues that affect our lives.

At The Women’s Collective, we are working hard to ensure that our community and staff understand what’s at stake in this upcoming election and that they vote based on the issues that are important to them.  We see our role as a motivator and want to encourage those in the HIV community to recognize how their votes can shape the future of HIV prevention and care.  This is especially important for women.  In this election we will see the sexual and reproductive rights of women debated in local and national elections.  Across this country, women and girls are having their rights to birth control, abortion and comprehensive sex education challenged.  This is an important issue for all women, but women living with HIV are doubly impacted by restrictive laws that may force them to disclose their HIV status in order to have their employers’ health insurance cover the cost of their birth control.

There are a host of relevant questions that local and national politicians will be tasked with answering.  The HIV community cannot afford to be unaware and uninformed on these important issues.

How will Ryan White be reauthorized?

Ryan White has been the safety net to support people living with HIV for over 20 years.  The decrease in perinatal HIV infections has placed Part D of this program on the chopping block because some have failed to recognize the life-saving influence of this program on women and girls living with HIV.  Support services such as transportation, patient advocates and childcare are essential to maintaining treatment for women and girls.  Funding for these resources is already failing to fulfill the current need.  Cuts to Part D only exacerbate the situation and may signal the coming of an end to Ryan White.

What happens to health care reform?

The Supreme Court is currently mulling over this decision but it is relevant in the next political cycle. If the highest court chooses to uphold this decision then our lawmakers will be tasked with ensuring that it is effectively implemented.  If it is overturned, then they will need to find other ways to address the health care coverage gap.  Too many people already are on AIDS Drug Assistance Program (ADAP) waiting lists and too many women of color need health insurance assistance but don’t qualify to be placed on a waiting list.  The cost of health care is even too steep for those that are insured.  Many people work hard day after day but are unable to obtain life-saving medications because of their expensive prescription co-pays.

Will our National HIV/AIDS Strategy mean anything?

The women’s community is still fighting to have the National HIV/AIDS strategy include issues that are relevant to the prevention, care and support needs of women.  This is a relevant and essential battle but if we elect administrations that don’t see HIV/AIDS as a priority then our fight will seem irrelevant.   There must be a dedication of funds and infrastructure to ensure that the Strategy is implemented and the meaningful participation of women, especially HIV positive women, is supported.  Otherwise, we will all lose.

How do we address the issue of poverty and HIV?

In 2010, the Centers for Disease Control and Prevention (CDC) released the results from a study that demonstrated epidemic levels of HIV infection among heterosexuals in high-poverty urban areas.[1] A generalized epidemic is defined as a rate of 1% or more.  This report indicated infection levels of 2.1%.   Individuals and organizations that have been working in this field for years know that HIV prevention requires more than condoms and HIV care requires more than medical treatment.  We must address issues of poverty, housing, stigma, violence against women, and racism to effectively combat the spread of HIV. We must ensure linkage to care, peer support services, mental health counseling, substance abuse treatment, and self-esteem building programs to effectively ensure that HIV positive individuals live well and maintain medical treatment for HIV and comorbidities.  We need leaders who are committed to ensuring access to quality education, decent paying jobs, medical care, and social support services.  Any candidate who doesn’t see poverty as a core issue doesn’t see HIV as a core issue that continues to undermine the long-term health of our country.

In May 2012, AIDS United provided our agency with training to aid us in identifying ways that we can effectively advocate for the changes that are critical to our health and wellbeing using our voice and the voices of the communities of girls and women we serve.  The training alerted us to ways that we can encourage and train women to be active in the political process.  It assisted us in clarifying our role in the community and pushed us to ensure that our clients and allies take the political process-and their voice in it seriously.

The state of HIV in this country pushes us to be assertive, not ambivalent. We and the women, girls, families, and communities we serve want to see the realization of the dream of an HIV free generation and we understand that this cannot happen unless we are an active, informed, and voting body in every part of the process.   While it is not our responsibility to tell people how to vote (in fact we can’t tell people how to vote), we are committed to informing those we serve about the many ways that their vote affects their daily lives and their future well-being.  In the race to November, we will continue to motivate the women, girls, families, and communities we serve to exercise the power of their vote and test the limits of their self-advocacy.

A Washington DC-based nonprofit organization led by women with HIV and their allies/advocates, The Women’s Collective (TWC)’s mission is to meet the self-defined needs of women, girls and their families living with or at-risk for HIV/AIDS, reducing barriers to care and strengthening their network of support and services


A Front Row Seat to the HIV Scientific Revolution

May 18, 2012 in HIV/AIDS Awareness Days, Policy/Advocacy

photo - Charles StephensBy: Charles Stephens, AIDS United Southern Regional Organizer

The promise of the end of HIV seems more like a reality every day. Over 30 years into the epidemic, we have witnessed unprecedented scientific breakthroughs and innovation. Much of this happened in the past few years and in the biomedical HIV prevention realm. As Co-Chair of the Emory University Hope Clinic Community Advisory Board, one of the sites of the HVTN 505 study, I have a front-row seat to the HIV scientific revolution.

The Hope Clinic is one of the clinical trial sites for the HVTN 505 study. HVTN 505, branded in Atlanta as the Life Forward study, investigates the safety and potential efficacy of an HIV vaccine in gay and other men who have with men, and transgender women. As CAB members we provide insights and perspective around recruitment strategies, research dissemination, input on grant proposals, and assist in identifying strategic partners to move research projects forward.  One of our most important tasks however, is bridging the academy with the community. Members of our CAB include: HIV/AIDS service providers, community members, people that work with or specialize in African-American communities, women, transgender women, and gay and other men who have sex with men.

CAB members are indispensible to the research process.  Along with researchers, we forge a partnership built on a shared commitment to ending the epidemic.

I became interested in biomedical HIV prevention research advocacy several years ago. I was invited to attend a national meeting hosted at the Los Angeles Gay and Lesbian Center. The meeting was convened by the Community HIV/AIDS Mobilization Project (CHAMP and brought together a diverse group of researchers and activists to identify strategies for how to best advocate for biomedical HIV prevention.

My background up to that point had been in HIV/AIDS community organizing and behavioral intervention implementation. The hope of a HIV vaccine seemed very abstract to me, so when I learned about all of the robust research happening, my interest was sparked. When the concept of the “HIV prevention toolbox” was introduced at the meeting, and the value of having multiple approaches to HIV prevention: biomedical, behavioral, and structural, it really struck me. Interventions must be coupled with each other for maximum efficacy.

Since then, I have become very interested in the development of HIV vaccines, and the advancement of biomedical HIV prevention, along with behavioral and structural approaches.  I felt an urgency to see a vaccine developed for HIV, and this is what inspired me to join a CAB doing Vaccine research.

There are a number of substantial reasons to get involved with a CAB, particularly in the realm of biomedical HIV prevention, and vaccine research in particular. For one thing, to be able to ensure the interests and engagement of community members is key. Any successful research project requires various skill sets and perspectives so as to create the best and most impactful results. I have witnessed first-hand not only the significance of being involved in the planning of research grant proposals, but also the dissemination of data, including how to talk about and frame research findings and the best way to share them.

HIV vaccine researchers are responsible for not only facilitating the collection of data, and certainly analyzing the data, but also grappling with the implications of the data. This is significant because ultimately the implications of the data provide insights into conclusions that can be drawn and insight into the possibilities of future work and new directions. CAB members can offer considerably to this dialogue, and thus, the best ideas are brought to bear through diverse points of view.

As I reflect on my work on the CAB, this National HIV/AIDS Vaccine Awareness day, I am reminded of the enormous responsibility it is  – and how satisifying it is — to be involved in the research process as a community advocate. Vaccines, along with the other tools in our HIV prevention toolbox, will bring us one step closer to an HIV free generation, and fulfill our potential and the promise to end the epidemic.

Advocating for ADAP: Florida Legislature Approves $2.5 M Increase in ADAP Funding

May 11, 2012 in Policy/Advocacy, Southern Initiatives

By Butch McKay, Executive Director, Okaloosa AIDS Support & Informational Services (OASIS)

As a Southern REACH Grantee of AIDS United, Okaloosa AIDS Support & Informational Services (OASIS) is proud to announce that the Florida Legislature approved a $2.5 million dollar increase in general revenue funds for the Florida AIDS Drug Assistance Program (ADAP).  Through our Activate! U Advocacy Academy program, OASIS played an active role in mobilizing the community around this legislation.

A little over a year ago Florida led the nation in the number of people living with HIV/AIDS on a waiting list for ADAP, with 4,000 plus people representing over 50% of the US total.  To reduce that number, the Florida HIV/AIDS Bureau proposed lowering the eligibility requirement for ADAP from 400% of the Federal Poverty Level to 200%.

The first goal Activate! U tackled was to organize consumers to attend and speak out at four statewide hearings held by the Florida Department of Heath around the proposal.  We had trained over 1400 advocates through our grassroots advocacy training and reached out to them all.  More than 1100 people attended four regional hearings, one of the largest gatherings ever for a public hearing around an HIV issue. The majority of them were graduates of our training and, for many of them, this was their first time to speak publicly. Their message was heard and the HIV/AIDS Bureau did not recommend changing the income level for ADAP eligibility.

We next joined forces with the Florida HIV/AIDS Advocacy Network (a statewide advocacy network that receives guidance and support from The AIDS Institute) to develop strategies to increase funding for ADAP in Florida. Through emails, letters, social media, and legislative visits we generated support for the Senate budget subcommittee Chair Joe Negron’s proposal to increase ADAP funding from general revenue funds dedicated to HIV care by $5 million.  We asked our constituents to write thank you letters to Senator Negron and we called on them to ask his counterpart in the House, Representative Matt Hudson, to match the Senate proposal in the House budget. Through the efforts of the advocates, the House, which originally had no increase in their budget, proposed a $2.5 million increase which the Senate accepted and the measure passed. We followed up with a campaign directed toward Governor Rick Scott to not apply a line item veto of the ADAP increase in the budget. This effort proved successful and the increase was approved.

Our next project is to inform consumers on the changes occurring due to Florida Medicaid Reform. There will be public hearings in June that for which we will encourage community participation, and, when Medicaid Managed Care is approved, we will educate consumers on the importance of open enrollment and providing information on the different available plans.

Activate! U has enjoyed three years of success. It is our vision to teach HIV consumers and their allies how to effectively advocate for themselves and to provide them with detailed talking points related to critical legislative issues that impact HIV care, treatment and prevention. We help people find and use their voice.  We work toward living in world without AIDS.  The success of our efforts has been enhanced with the support of AIDS United and the Ford Foundation through the Southern REACH Program.