by Carole S. Treston, Executive Director, AIDS Alliance for Children, Youth & Families

On October 20, the White House Office of National AIDS Policy convened the third in a series of public forums to address the implementation of the National HIV/AIDS Strategy (NHAS) and the Affordable Care Act (ACA). This session, “Sustaining the Community-Based Response to HIV” held in Philadelphia, was attended by community based providers, local government, medical providers, consumers and activists and academics from the Philadelphia region. The panel – local and national experts, talked about their perspectives on the expansion of Medicaid and other changes in the HIV funding and service delivery environment provided by the ACA and how that may support or possibly hinder achieving the goals of the NHAS.

One of the main goals of the NHAS is to reduce new infections by 25% and an audience member asked how we could achieve this, since new infections have remained at the same rate, more than 50,000/year- every year for a decade now. Did the Centers for Disease Control and Prevention (CDC) intend to fund differently or change its priorities? I’m not sure that was fully answered to the audience’s satisfaction, but Paul Kawata spoke about how the recent scientific data of 052 and the PreP studies support treatment as prevention. He pointed out that this and other advances show the potential for ending the AIDS epidemic in the US. It is possible. We have the knowledge, but do we have the political will (and resources) to achieve that vision? He reminded us that people living with HIV/AIDS (PLWHA) began this struggle and must continue to lead the efforts to the conclusion.  The expansion of Medicaid in 2014, theoretically will increase access to medications and treatment, but there remains a lot of concern in the community about diagnosis and treatment and that we still have a long way to go to educate people about the benefits of knowing their HIV status and getting into treatment. We know the role of Community Based Organizations (CBOs) and PLWHA is the front line there.

This hit home later that week. Philly is my hometown, my family is there and I still live there. That weekend, my niece told me one of her friends just tested positive. He’s a twenty two year old black gay man who lives at home with his mother and sister in North Philadelphia. With the support of his mother (she didn’t throw him out of the house, as unfortunately is too often the case) he is beginning to deal with his diagnosis, get into care and remarkably – tell his friends. But the two guys and one girl who also slept with the same guy, don’t want to know their status, don’t want to talk about it and will not get tested. We still have a way to go.

With the ACA, many patients (but not all) who were formerly uninsured and cared for through Ryan White dollars will now be eligible for Medicaid. Due to this expansion in a shrinking budget environment at the state and federal levels, the likelihood of shifts in Ryan White resources looms in 2013 and beyond. With the possible loss of Ryan White funding, CBOs that deliver only HIV services and/or rely solely or largely on Ryan White funding could be in jeopardy.  Also, the focus and investment in Community Health Centers, in particular Federally Qualified Health Centers (FQHCs) is likely to be an ongoing trend in health care delivery through this decade. FQHCs must provide a continuum of care, not specific to one population or one disease, regardless of a patient’s ability to pay.

The message was clear – organizations need to be preparing for the future NOW.  Two organizations that made the shift were featured, The Mazzonni Center (Phila) and Whitman Walker Health (DC).  Nurit Shein, Executive Director of the Mazzoni Center, and Don Blanchon, Executive Director of Whitman-Walker Health, both talked about expanding their mission beyond HIV to healthcare for the larger LGBT community, adopting a new business model, and working towards FQHC status. Both are continuing to take a hard look at what their population needs, identifying what their organization has done well, determining what was better done through collaborative formal partnerships with another agency, and, in some cases, deciding which activities and services they needed to divest because other organizations were doing them better.

The role of incarceration in fueling the HIV epidemic and health disparities kept coming up and the audience was not going to let their concerns go unanswered- this is the home of ACT-UP Philadelphia after all. Currently, when someone becomes incarcerated, they are terminated from Medicaid and they face an uphill battle to regain coverage after release, which presents a big problem for getting and keeping PLWHA in stable medical care post-release without Ryan White programs. The link between disproportionate rates of incarceration in black men and the disproportion rate of HIV and health disparities was well made by audience members. While the provision of care through community health centers to individuals when they are released from prisons, regardless of their insurance status or ability to pay was well described by Kathy McNamara from the National Association of Community Health Centers, the vital role that Ryan White resources play in linking and retaining PLWHA in care post- release.  No matter how different the future will be, there will still be a need for the Ryan White program — still as a safety net, but now for the ACA, if we are to achieve the goals of the NHAS and end the AIDS epidemic in the US in our lifetime. Wouldn’t that be something?

The Office of National AIDS Policy (ONAP) hosted a National HIV/AIDS Strategy (NHAS) implementation dialogue in Baton Rouge, Louisiana, at the Manship Theatre on October 25, 2011. The intimate venue allowed the many participants to feel the impetus of the meeting’s topic; collaboration. Mr. Jeff Crowley, Director of ONAP set the tone and emphasized the administration’s initiatives to address the domestic HIV epidemic. A warm welcome was provided by Gwen Hamilton on behalf of Mayor Kip Holden; support of the Mayor’s Office was a fine case in point towards the spirit of collaboration. Ronald Valdiserri offered an Update of Federal Implementation Efforts, which ran the gamut from cross-governmental efforts to integrate biomedical advances in prevention, treatment and care to referencing faith-based initiatives and the 12 Cities Project.

Kandy Ferree, a strategic consultant and former CEO of National AIDS Fund, addressed on public private partnerships struck strong chords with the almost 100 individuals present. In addition to connecting the dots on key pieces of partnership planning, the presentation offered many take home points in tune with these challenging times: “Examine core competencies…” “…change management takes leadership” and a “willingness to change the system.” Examples of successful partnerships in action, including AIDS United’s Access to Care initiative supported by Social Innovation Fund, were directly tied to supporting the NHAS goals and made sure to mention performance metrics. The collaborative theme was carried into the panel discussion, moderated by Terry McGovern of the Ford Foundation. The diversity of panelists, representative of governmental, community- based, and private sectors, furthered the coordinative focus. The topics panelists touched on, ranging from ADAP need to Medicaid expansion, were echoed by the community’s comments. No one seemed to mind that well organized members of the Louisiana AIDS Advocacy Network (LAAN) monopolized the mic. While referencing data evidenced in the Louisiana SHARP report, public comments covered typical topics, including expanding access to care via 1115 Waivers to reducing disparities and unmet need, with an especial request to expand the 12 Cities Project.

Personally, as a proponent of housing stability and peer programs to improve health outcomes, I would have preferred more attention to these areas, but the latter was addressed by Ferree’s mention of Health Navigators and suggestion to train and credential peers, while the former was not ignored, as Crowley emphasized the efforts made towards reducing silos, including coordination with Housing and Urban Development and increasing the supply of affordable housing. Overall, the community clearly embraced Crowley’s sentiment that there continues to be a ‘heightened sense of urgency’ to collectively work towards the vision of NHAS. Advocates present, representatives of the Baton Rouge and New Orleans’ areas primarily, but also inclusive of rural and regional peer participants, seem poised to further public private partnerships and appreciated ONAP’s presence and guidance in hosting this spirited forum.

How are we going to meet the escalating demand for HIV care in our country when our waning HIV care workforce already is stretched to the limit?  That was the topic at the second National HIV/AIDS Strategy (NHAS) Implementation Dialogue meeting, hosted by the White House Office of National AIDS Policy (ONAP) on October 4, 2011 in Seattle, WA.  Entitled “Building Capacity within the HIV Workforce so that it Delivers What We Need Today and Tomorrow,” the event brought together representatives from the community, state and federal government; HIV researchers; and healthcare professionals (HCP) to  collect community-driven input about the crisis facing the HIV care workforce.  Jeffrey S. Crowley, Director of the ONAP, presented an overview of the Strategy and the implementation processes currently underway, including community input via these dialogue meetings, and encouraged the audience to share their ideas and suggestions for increasing HIV workforce capacity.

Dr. David Spach, Principal Investigator and Clinical Director of the Northwest AIDS Education and Training Center and Professor of Medicine at the University of Washington’s Division of Infectious Diseases, presented a snapshot of the current HIV workforce and potential solutions for expanding the number and diversity of HCP involved in HIV care.  A defining factor of the current HIV workforce is the increase in the number of individuals living with HIV in the United States due to the success of antiretroviral therapies and expanded efforts to implement the CDC’s 2006 Revised Recommendations for HIV Testing.  This increase in demand for HIV services has outpaced the number of HCP willing and able to manage patients with HIV infection.  Solutions for building the capacity of the HIV workforce rely heavily on recruitment during training in medical schools, residency programs and HIV fellowships as well as continuing educational support for HCP currently in practice.  Innovative financial incentives, co-management and mentoring programs, and the use of technology to support HCP in rural and isolated areas were also identified as solutions to HIV workforce shortages.

Panelists from academic, federal, state, and community settings discussed the role of the Ryan White HIV/AIDS Program in supporting the HIV workforce, ways to attract “new talent” into HIV care and engage “non-HIV” providers (i.e., those not experienced in providing HIV care and treatment) into care, as well as ways to generate local solutions to HIV workforce challenges through private sector and philanthropic resources.

An energetic discussion among panelists and audience members included an acknowledgement of the Ryan White AIDS Education and Training Centers’ role in building the capacity of HCP across the country, as well as an affirmation of the need to target educational efforts to the pre-service “pipeline” as a means of capturing the interest of future HCP before they begin practice.  Involving the entire health care team and evolving roles to support optimal patient care outcomes and clinic efficiencies was also addressed, as was linking prevention and care efforts.  The Ryan White clinic setting also was identified as an exemplary Medical Home model that could be more broadly applied in new clinical care settings that develop within the constructs of health care reform.

These ideas and suggestions will inform the on-going implementation of the NHAS.  If you would like to provide input into the continuing implementation of the NHAS, please contact AIDSPolicy@who.eop.gov.

For more information about this and other National HIV/AIDS Strategy Implementation Dialogue meetings across the United States, please visit the White House Office of National AIDS Policy.

by Kathie Hiers, CEO, AIDS Alabama

AIDS United Policy Partner and  Southern REACH Grantee

On September 27^th, 2011, the White House Office of National AIDS policy (ONAP) kicked off its tour of five cities in Birmingham, Alabama.  The tour’s purpose is to both disseminate and gather data around the implementation of the National HIV/AIDS Strategy, which was released in July 2010.  The ONAP staff, including Director Jeffrey Crowley, will explore different topics in each city on the tour.

Nearly 300 people attended the Birmingham meeting, where the topic was on “Incorporating Prevention and Care Research into Programs.”

Dr. Carol Garrison, President of the University of Alabama at Birmingham (UAB), offered welcoming remarks.  The Assistant Secretary of Health and Human Services, Howard Koh, MD, MPH, then presented an update of progress toward the goals of the NHAS.

Promising biomedical findings

Dr. Michael Mugavero of UAB briefly recapped the groundbreaking research that has occurred in various biomedical interventions.  Of particular note was the HPTN 052 study, the hottest topic in the HIV arena, which is shifting the way providers think about HIV treatment.  The HPTN 052 study strongly suggests that antiretroviral therapy (ART) may make HIV-positive persons less contagious.  In serodiscordant couples, transmission was reduced by 96% for the arm of the study in which the HIV-positive person in the couple started ART early as appropriate.  Dr. Mugavero also highlighted the Gardner Cascade, published in 2009, which indicates that only 19% of the country’s HIV-positive population has suppressed viral loads. He was clear this low number indicates that other social determinants of health must be addressed through continued provision of supportive services and housing, as these services are critical to successful medical outcomes.

Get involved!

Participation in the tour is a real opportunity to provide input or ask questions about the topic of the gathering.  Plan your question or comment in advance, make it short and sweet, and stick to the topic at hand!

View the schedule of all the dialogues and register for one of the events.

The launch of the National HIV/AIDS Strategy one year ago marked an historic opportunity and potential turning point for the epidemic in the United States.  For the first time, a U.S. President and his administration demonstrated a serious commitment to ending HIV/AIDS in the United States by bringing together government officials and HIV/AIDS community leaders to develop a clear, focused and achievable plan to reduce new infections and to ensure those living with and affected by HIV have access to life-saving prevention and care services. And we – the HIV community, the private sector, and public and private philanthropies have a key role to play in helping the federal government, with bi-partisan support, ensure its successful implementation.

AIDS United has taken this responsibility seriously.  In the year since the NHAS release, we have been at the forefront of cultivating significant public and private investments for our Access to Care (A2C) programs, which advance real-time implementation of the NHAS goal of Increasing Access to Care and Improving Health Outcomes for People Living with HIV.

Thanks to the millions of dollars invested by Bristol-Myers Squibb, the Social Innovation Fund (SIF),  MAC AIDS Fund, the Elton John AIDS Foundation, the Ford Foundation, ViiV Healthcare,  Chevron, Walmart Foundation, Broadway Cares/Equity Fight AIDS, and Walgreens, AIDS United is able to support community-driven programs across the country that  help thousands of people living with living with HIV/AIDS from our country’s most vulnerable populations access  life-saving care and support services.  These investments represent the largest public and private collaboration to date to move the National HIV/AIDS Strategy forward.

Unfortunately, while we forge ahead building private sector support for community-based HIV/AIDS programs, Congressional battles over the federal debt threaten to severely cut funding for Medicare and Medicaid, and other federally-funded services that significantly impact people living with HIV/AIDS.  AIDS Drug Assistance Programs (ADAP) across the country continue to face funding crises, forcing waiting lists that total nearly 9,000 and counting.  Clearly we have to advocate for and protect these programs, and the people they serve.

And while we fight to protect and save federally-funded programs that help people living with HIV/AIDS, the National HIV/AIDS Strategy serves as a game-changing blueprint for helping to end HIV/AIDS in America.  The goals and outcomes of the NHAS are now ours to support, in the face of whatever is happening in the halls of Washington. We must continue to build partnerships that leverage new investments that are disbursed to the communities and populations in our country most affected by the epidemic. We must continue to advocate for sound HIV/AIDS policy that supports the implementation rather than slows, or worse, halts it.  We must continue working together – the HIV community and the private and philanthropic sectors – to fund and implement  innovative solutions that improve health outcomes and make achievable the goals of the National HIV/AIDS Strategy.

Without these essential partnerships, the National HIV/AIDS Strategy will remain only that – a strategy – and it will fail to be the historic turning point in the epidemic which will lead us to the  ultimate vision  – the end of the AIDS epidemic in America.