The Weekly Update 1

September 1, 2006

This Week in Washington
1. Ryan White Grantees Conference
2. Prevention Letter Sent by Community Based Organizations
3. Washington Post Article Continues to Elicit Response

This Week in Washington
1. Ryan White Grantees Conference
The Ryan White Care Act (RWCA) Training and Technical Assistance Grantee Meeting 2006 and 9th Annual Clinical Update was held August 28-31, 2006, at the Marriott Wardman Park Hotel in Washington, D.C. This bi-annual meeting is hosted and organized by Health Resource Service Administration (HRSA) HIV/AIDS Bureau (HAB) staff. The theme of this year’s conference was “CARE Act: Committed to Action.”

The meeting serves as an opportunity for fellow grantees and HRSA/HAB administrators to share and learn from each other’s work, successes, and challenges. This year’s meeting offered an exchange of training and technical assistance with a focus on four objectives: 1) identifying strategies to improve systems of care for people living with HIV/AIDS, 2) increasing grantees' knowledge of programmatic and administrative requirements, 3) enabling grantees to share models of care, and 4) encouraging collaboration and networking among grantees.

Opening Plenary
A video montage with the message “You are all the Ryan White CARE Act” welcomed grantees to the meeting. Steven Young, Director of the Division of Training and Technical Assistance at HRSA, moderated the opening plenary, calling on participants to use the meeting as an opportunity to “Celebrate our work.”

Following Mr. Young’s introduction, Dr. Elizabeth Duke, Administrator for HRSA, continued with the theme of celebration, emphasizing “that we make a difference.” She acknowledged the work of Jeanne White Ginder, Ryan White’s mother, HAB staff, and the meeting participants, highlighting the good work that is found in programs supported by the Ryan White CARE Act. Dr. Duke next focused on the vital role of health information technology, the current successes and future potential of the Emergency System for Advance Registration of Volunteer Health Professionals (ESAR-VHP), grantees’ work on border health issues, and the need to improve oral health care for patients living with HIV. Dr. Duke concluded with an update of the status of the Ryan White Care Act on Capitol Hill, but was unable to offer much guidance on when the CARE Act will be reauthorized.

Dr. Duke’s remarks were followed by a video message narrated by actor Dennis Haysbert, highlighting the successes of the Ryan White CARE Act over the past 15 years. The video commended the number of people who have been able to access care since the implementation of the Ryan White CARE Act.

Next, Dr. Deborah Parham Hopson, Assistant Surgeon General and Associate Administrator for the HIV/AIDS Bureau, HRSA, offered opening remarks. She recognized and thanked the executive committee for all of their work to make the meeting happen. Dr. Parham Hopson continued her presentation by remembering the bigger picture and reflecting on the reasons that brought grantees to this work. Recalling the past, Dr. Parham Hopson illustrated the painful road to the passage of the RWCA, remembering a young Indiana boy and many early service providers whose courageous fight played a significant role in the country’s response to HIV. She recognized the role the politically potent gay and lesbian rights movement played in bringing the issue to Washington, DC. Next, Dr. Parham Hopson talked about the successes of the RWCA and how it has allowed HIV care to go beyond medicine. Dr. Parham Hopson said, “Compassion plus know-how and our commitment to comprehensive services are the foundation on which our successes have been built….The value of care cannot always be measured by T-cells and viral loads.” Dr. Parham Hopson concluded her remarks by thanking all participants for who they are and for the work that they do.

AIDS Action Workshop
AIDS Action presented a workshop at the conference entitled, “Overcoming Distance and Barbed-Wire: How to Connect People to Care,” on August 30, 2006. The session engaged conference participants in a discussion about Connecting to Care, an initiative to address unmet need in HIV care and treatment that AIDS Action Foundation has been developing through two cooperative agreements with the Health Resources and Services Administration HIV/AIDS Bureau.

AIDS Action Staff Members Rebecca Haag, Executive Director, and Dea Varsovczky, Associate Program Coordinator, led the interactive session. The workshop began with an introduction to the purpose of the initiative. Rebecca Haag spoke on addressing unmet need in this country, and the first Connecting to Care workbook and initiative. The HRSA definition of “unmet need” is HIV positive individuals aware of their infection and not receiving regular medical care. There are an estimated 250,000 Americans who meet this definition.

The first Connecting to Care workbook profiles 17 interventions in 9 cities that successfully link HIV positive people who are aware of their status to regular care. AIDS Action conducted the research for this workbook from 2001-2003. After receiving a copy of the workbook, workshop participants were given time to select an activity and read its profile. This was followed by a group conversation about the elements in the activities that contributed to their success in linking people to care.

Dea Varsovczky then explained the next phase of the initiative: the publication of a second workbook, Connecting to Care II. The objective of Connecting to Care II will be to again identify interventions that help connect the unmet-need population to regular medical care. However it will focus on individuals who live in rural communities or who are or have been incarcerated. AIDS Action is currently in the last stages of publishing the second edition of the workbook, which features 25 activities in 4 states and the District of Columbia.

AIDS Action conducted the research for this workbook from 2005-2006, conducting on-site interviews with agencies serving rural communities in North Carolina and Kansas and with agencies serving formerly or currently incarcerated individuals in Washington DC, Texas, and New York City.

When Connecting to Care II is published later this year, AIDS Action will begin to distribute the workbook and provide related training to HRSA grantees, administrators, health care providers, planning councils, social service providers, and faith-based service providers on addressing unmet need using the Connecting to Care model.

If you would like more information on the workshop and the Connecting to Care initiative please visit www.connectingtocare.net. If you are interested in receiving a copy of the workbook or participating in future workshops and trainings please email connectingtocare@aidsaction.org.

In addition to AIDS Action’s presentation, the grantee meeting included four plenary sessions, 185 workshops, 132 poster presentations and other learning sessions.

Closing Plenary
The grantee meeting closed with a plenary luncheon moderated by Steven Young and a keynote presentation by Assistant Secretary of Health Admiral John Agwunobi, MD, MBA, PhD.

Summing up the biannual meeting, Mr. Young called it a stimulating, invigorating, and tiring experience where CARE Act grantees had been able to share new models and ideas at over 600 sessions as well as important hallway conversations. “I hope you leave inspired–feeling the passion inside,” he commented.

Recognizing the critical role CARE Act programs play in filling service gaps, Mr. Young observed that these programs offer support to populations who confront many barriers to care. Citing examples, he noted that three-quarters of CARE Act clients live below the federal poverty line; 15% have no housing; 30% have no health insurance. Further, a disproportionate number of CARE Act clients are African American and Latino—52% and 23% respectively in 2004.

In response, the Minority HIV/AIDS Initiative directs 35% of its funding to CARE Act programs, according to Mr. Young. Many Special Projects of National Significance (SPNS) focus on health disparities in HIV care, he added. And the AIDS Education and Training Centers (AETCs) are committed to training medical providers from minority populations to care for their patients’ HIV disease, and 58% serve minority populations. Lastly, he said that, although the provision of anti-retrovirals is uneven across different races and ethnicities, the disparity is diminishing.

When he completed his remarks, Mr. Young welcomed to the podium Dr. Deborah Parham Hopson, who introduced Admiral Agwunobi.

In his presentation, Admiral Agwunobi explained that his speaking “assignment” was to thank the grantees. But how, he wondered, could he adequately express “the gratitude of the patients, families, and communities touched and the lives saved [by the grantees]?”

“You’re average people who live in communities who decided to make a difference,” he said, adding that when he looked out over the crowd he was “looking at the spirit of the nation.”

He then referenced a quotation by Hubert Humphrey, which he sees every day as he enters his workplace: the Department of Health and Human Services’ Humphrey Building. He knows it by heart. It reads, “The moral test of government is how it treats those who are in the dawn of life, the children; those who are in the twilight of life, the aged; and those in the shadows of life, the sick, the needy and the handicapped.”

Reflecting on Humphrey’s observation, Admiral Agwunobi said, “It doesn’t just apply to government.” It is also the test of “a compassionate, caring society.” Continuing, he stated: “We don’t turn away because those affected are different than us. We rise and help.” He said this help is provided regardless of a person’s sexual orientation, gender, or age. However, he said he could not add race to his list.

“I was going to say race,” he revealed, but a recent reading of a statistic had stopped him. It’s one, he noted, that has been repeated many times in various publications: HIV/AIDS is the single greatest killer of African American women ages 25 to 34. “Let’s think about this together,” he encouraged, for it “gives us a sense of what lies in front of us [in the HIV epidemic]—women, African American, 25 to 34 . . . babies’ mothers.”

“Am I the only one who senses trouble in the African American community?” he asked. “Is there anyone who feels the outrage?”

He urged attendees to “rise up and make sure that no sector of our society feels like it has been left alone.” And while he said that everyone must be involved in addressing the devastating effects of HIV on African Americans, he urged leaders of the African American community in particular to “rise up” because they have shown they are able to “move mountains . . . move dreams into reality.”

Admiral Agwunobi said that the Ryan White CARE Act is a powerful tool in this effort—and President Bush, HHS Secretary Michael Leavitt, and he are all committed to ensuring that it “meets today’s realities.” However, he stressed that efforts against HIV are not just about policy or law, and “the fight won’t be won in a formula.” It also requires advocacy, education, and a constant awareness of “what this is really about”: people living with HIV, their family members, and the millions of people affected by the epidemic.”

“Keep your heads up high; you do such good work,” he told attendees. “Be human; be warm,” he encouraged. He also asked attendees for a favor. “Before you leave, thank another grantee for the work you do.” Such thanks has greater meaning than any thank you he could deliver, Admiral Agwunobi explained, because “no one knows what it takes but you.”

2. Prevention Letter Sent by Community Based Organizations
The following Community Based Organizations sent a letter to Senator Mike Enzi (R-WY), Chairman of the Senate Health, Education, Labor, and Pensions Committee, Senator Ted Kennedy (D-MA), ranking member of Senate Health, Education, Labor, and Pensions Committee, Representative Joe Barton (R-TX), Chairman of the House Energy and Commerce Committee, and Representative John Dingell (D-MI), Ranking Member of the House Energy and Commerce Committee on Friday August 25, 2006. The letter was written to voice concerns on possible HIV Prevention funding provisions in the Ryan White Care Act.

The letter reads:

We the undersigned representatives of national HIV/AIDS organizations are writing to share our concerns about a proposed prevention-related provision under consideration for inclusion in the “Ryan White Modernization Act of 2006.” We applaud your commitment to reauthorize the Ryan White CARE Act and the many hours of work your staff have put into the development of the bill. We understand that the details for the bill are still being finalized and want to raise our concerns with you in the hope that you will alter this troubling provision.

We understand that a provision to carve $30 million out of CDC HIV prevention funding every year for five years is under consideration. Of the $30 million, $20 million would be available as incentive grants to states that have enacted voluntary opt-out testing of pregnant women and universal testing of newborns and $10 million would be available as incentive grants to states that have enacted voluntary opt-out testing of clients at STD clinics and voluntary opt-out testing of clients at substance abuse treatment centers.

We are concerned that this large amount of funds being carved out of existing resources will result in cuts to prevention cooperative agreements with state and local health departments and Community-Based Organizations (CBOs). State and local health departments have already had their grants cut by $21 million since FY2003. Additional cuts will further hinder the ability of these programs to expand their testing efforts to all at-risk populations. We also believe this provision is inappropriate given that CDC has yet to release their updated HIV Testing Guidelines. Incentives for increased testing should be relevant to the anticipated guidelines and emphasize testing of at risk populations in a variety of settings. We also believe that the provision should be in
keeping with the President’s Domestic HIV/AIDS Initiative that seeks to test 3 million
Americans through a comprehensive approach to testing.

Additionally, we believe that Illinois would currently be the only state eligible for the $20 million pot. In addition, states generally do not regulate HIV testing based on the setting and are likely to have opt-in or opt-out for the offering of HIV testing regardless of setting. In short, we oppose a carve-out for such a limited purpose. Any provisions should reflect the current environment in which states regulate and administer HIV testing.

On a final note, it is critical that funds are provided to state and local health departments
and CBOs not only for testing but also to support infrastructure for training, counseling, staff time, and confirmatory testing needed to support such initiatives.

We strongly request that you remove the proposed prevention grants or significantly
broaden the eligibility criteria and fund it with new money. We would be happy to discuss this with you in greater detail at your convenience.

Sincerely,

Rebecca Haag
Executive Director
AIDS Action Council

David Harvey
Executive Director
AIDS Alliance for Children, Youth, and Families

Ernest Hopkins
Co-Chair, Policy Committee
Communities Advocated for Emergency AIDS Relief Coalition

Frank Oldham
Executive Director
National Association of People with AIDS Action

Julie M. Scofield
Executive Director
National Alliance of State & Territorial AIDS Directors

Paul Kawata
Executive Director
National Minority AIDS Council

Ryan Clary
Associate Director, Health Care Advocacy
Project Inform

3. Washington Post Article Continues to Elicit Response
On August 23, 2006 the Washington Post printed a front page article titled, “Sen. Clinton Delays AIDS Law's Renewal, Citing Cut in N.Y. Funds.” Since its publication, numerous responses have been written. On September 1, 2006 The Washington Post published a letter to the editor written by Representatives Eliot Engel (D-NY) and Ed Towns (D-NY) entitled, “Don’t Penalize States That Care.” The New York Times published an editorial on September 1, 2006 entitled, “AIDS Money Suddenly at Risk.”

The Washington Post published letter reads as follows:

“Don't Penalize States That Care”
As members of the House Energy and Commerce Committee, we have worked hard for more than a year on the Ryan White CARE Act Reauthorization. New York spends more money than any other state on care for its residents with HIV-AIDS, so we are especially troubled by a proposal to factor in the availability of state and local resources when allocating federal funding. That means states such as New York may be penalized for caring for patients.

Sen. Hillary Rodham Clinton, like other members of the New York delegation, has fought for a more balanced approach for HIV-AIDS funding under which New York doesn't face the prospect of losing as much as $24 million in the first couple of years.
That loss of funding would prevent us from adequately helping 110,000 New Yorkers living with HIV-AIDS. As our state is home to 17 percent of the nation's people with AIDS, there are few pieces of legislation as important to New York as this act. There has been widespread bipartisan opposition to the Senate bill from many members of Congress and HIV-AIDS advocacy groups. That is why the legislation has stalled. Even before the Senate passed its bill, Govs. Rick Perry (R-Tex.), Jeb Bush (R-Fla.), George E. Pataki (R-N.Y.), Jon S. Corzine (D-N.J.) and Robert L. Ehrlich Jr. (R-Md.) wrote to express their concerns with the proposed funding changes.

We hope for a consensus bill that empowers states to properly care for their residents with HIV-AIDS. In the meantime, it is our responsibility as members of Congress to reject attempts to reward states that have failed to do their fair share to help people with HIV-AIDS at the expense of states that have.

ELIOT ENGEL
U.S. Representative (D-N.Y.)
ED TOWNS
U.S. Representative (D-N.Y.)

The New York Times editorial reads as follows:

“AIDS Money Suddenly at Risk”
A lethal form of budgetary politics is at work in Congress. The proven formula for assisting AIDS-ridden urban areas that pioneered effective treatment programs is in danger of being radically altered to shift money to more rural states. Rather than increase spending to cover both real priorities — the cities’ AIDS needs and the growing problem of H.I.V. in rural areas — current proposals would deny the cities tens of millions of dollars.
Nothing could be more foolhardy for the nation as a whole. The AIDS battle knows no boundaries and has hardly waned in New York, California, Florida, Illinois and the other states that first confronted the challenge a generation ago. The cuts being contemplated would be traumatic for the valuable mix of treatments now given to tens of thousands.
The Republican leadership hopes to rush this change through Congress soon after it returns next week in the renewal of the $2 billion AIDS spending program. A fairer formula is being sought by alarmed lawmakers from the states slated to be shortchanged. Republicans are trying to spread nonsense that this all about red state versus blue state. The real question is whether Congress would dare to turn the proven Comprehensive AIDS Resources Emergency Act into another demeaning pork-barrel competition. In effect, the potential urban losers stand to be penalized for having shown the way in fighting the AIDS scourge.
Lawmakers have been on a generous recess in which they drove spending for their own re-election lifelines to $300 million for television alone. It will take a relative pittance — perhaps $100 million more — to finance the AIDS fight across the board. Surely a Congress that repeatedly spends far more on favored pieces of hometown pork can find the wherewithal to see to this life-and-death issue for the entire nation.

 

The AIDS Action Weekly Update
The Weekly Update is written with a mind toward the interests of our members. If you are interested in membership with AIDS Action, we invite you to contact members@aidsaction.org.

AIDS Action works to end the HIV epidemic by advancing public policies that prevent new infections, provide care for people living with HIV, and support the search for a cure. AIDS Action serves as the national voice for people living with HIV and represents AIDS service organizations, health departments, and a diverse network of community-based organizations across the country.