September 29, 2006

This Week in Washington
1. House Passes NIH Reauthorization
2. Global HIV/AIDS Vaccine Research and Advocacy Congressional Briefing

Highlights from the United States Conference on AIDS
1. AIDS Action at USCA

CARE Act in Brief
1. Ryan White CARE Act Passes House

Announcements
1. Senate and House to Recess until November 13, 2006

This Week in Washington
1. House Passes NIH Reauthorization
The National Institutes of Health Reform Act of 2006 (HR 6164) passed in the House on Tuesday, September 26, 2006 by a vote of 414-2. The House considered the bill under suspension of the rules, barring any amendments and requiring a two-thirds vote for passage. This bill would reauthorize NIH for the first time since 1993.
The legislation intends to restructure the NIH, increase its budget, and encourage research across multiple medical disciplines. It calls for a 5% increase annually from the agency’s $28.3 billion budget for Fiscal Year 2007-2009. There is a provision in the bill that limits the agency to its existing 27 institutions; however, a common fund to pay for research involving more than one of these centers would be created. Under the bill, an advisory panel would be formed to recommend further reorganizations, including the elimination or consolidation of some centers. The bill also requires the agency to establish an electronic system to keep track of research grants and activities.
House Energy and Commerce Chairman Joe Barton (R-TX) sponsored this bill. He said that restructuring the NIH has been one of his longtime goals and he has called this bill the signature achievement of his committee in the 109th Congress. The House Energy and Commerce Committee approved the bill last week by a vote of 42-1. Contining concerns with the bill include the need for increased funding and racial diversity in clinical trials.

The bill goes next to the Senate, where its fate is uncertain considering Senators may not have adequate time to consider the measure during this Congress. The Senate Health, Education, Labor and Pensions Committee has jurisdiction over NIH but the panel has not yet considered any similar legislation. Committee members and other senators are expected to want considerable time to review it.

To read the bill in its entirety please visit: http://clerk.house.gov/cgi-bin/lgwww_bill.pl?206164

2. Global HIV/AIDS Vaccine Research and Advocacy Congressional Briefing
On Friday, September 22nd The Global Health Council and the International AIDS Vaccine Initiative (IAVI) co-sponsored a panel discussion to highlight HIV/AIDS vaccine research, clinical trials, and community engagement in Kenya, Uganda and India. Nicole Bates, Director of Government Relations at the Global Health Council, moderated the discussion. Speakers included: Dr. Omu Anzala, Principal Investigator and Project Manager at the Kenya AIDS Vaccine Initiative (KAVI), Ms. Anjali Gopalan, Executive Director at the Naz Foundation (India) Trust and Dr. Pontiano Kaleebu, Principal Investigator at the Uganda Virus Research Institute (UVRI). Each panelist discussed the types of ongoing vaccine research in their respective countries.

Ms. Bates began the discussion by stating, “Currently there is no cure for AIDS.” She explained in the 25 years of the epidemic 25 million people have died and there are currently 40 million people living with the disease. According to Ms. Bates, current HIV/AIDS antiviral medications only aid in impeding the progression of AIDS. She said, “The United States has been the leader in fighting the AIDS epidemic. Democrats and Republicans alike both support research on developing an AIDS vaccine, however, only 18% of HIV/AIDS funding goes to vaccine research.”

Dr. Omu Anzala spoke next; he gave a presentation on KAVI vaccine research efforts in Kenya. He explained that the institute was established in 1999 and brings together scientists from the Department of Community Health and the Department of Pediatrics of Medicine Microbiology. The ultimate goal of KAVI is to find an HIV/AIDS vaccine. The population of Kenya is estimated at 33 million, and their first AIDS cases were discovered in 1985. He indicated that the prevalence rate has dropped from 18% in 1990 to 6% in 2005. However, there are still 1.5 million Kenyans infected, with 86,000 new adult AIDS cases and 43,000 children AIDS cases each year. He explained the clinical trials caused fear and anxiety, because this type of research had never been conducted in Kenya. KAVI educated the media and held stakeholder and community meetings to help create a favorable supportive environment for the trials. In responding to this challenge KAVI had to explain patient behaviors and intensify advocacy efforts to make sure people understood the process before the trials were to take place. After this educational campaign KAVI began its first vaccine trial in January 2001 and currently has two clinical trial sites. One site is for Phase 1 and 2 safety trials and one site is for the larger Phase 2B and Phase 3 efficacy trials.

Mr. Anzala finished his presentation by explaining the challenges ahead for vaccine research. He believes that many governments across the world have not put HIV/AIDS vaccine research and its necessary funding on their agendas.

Next Ms. Anjali Gopalan, the Executive Director of Naz Foundation (India) Trust, began her presentation regarding HIV/AIDS vaccine research in India. She explained that currently India is unsure of its AIDS prevalence rate, but estimates reach higher than 23% (South Africa’s prevalence rate). According to Ms. Gopalan, India does not currently have a mechanism to count how many people in India are infected.

When the vaccine initiative started in India Ms. Gopalan didn’t believe it was the correct direction to go, because she didn’t want to see the Indian people used as “guinea pigs”. She believed that the Indian government would want to find a vaccine at any cost in order to avoid dealing with the issues of sexuality, primarily, heterosexuality and homosexuality. She explained, she was skeptical when the first trials began and was constantly watching to see if the trials were conducted ethically. She was surprised at the transparency of the research. She said, “Every step of the way there was an advisory board, there were government representatives from differing countries discussing the results.” She explained how there have been difficulties with conducting trials in India due to cultural, marital, and criminal barriers. One difficulty for example is recruiting men who have sex with men (MSMs) to participate in the trials because India has an anti-sodomy law and those men could be prosecuted as a result of participation. She did add that these laws were currently being debated in the Indian courts. In addition, she expressed concern over women being afraid to ask their husbands for permission to participate in the trials.

Lastly, Dr. Pontiano Kaleebu, the Principal Investigator for the Uganda Virus Research Institute (UVRI), discussed the research his institute has conducted. He explained that Uganda’s population is 24 million people, of which there has been a decrease in the prevalence rates since the early the 1990s. Currently, Uganda has an average national prevalence rate of 6.5%.

Since 1999, UVRI has conducted six clinical HIV trials. Mr. Kaleebu indicated that the first trial was the most difficult to implement. Factors challenging the trial launch included obtaining government approval and dealing with a hostile media. To remedy this, the Institute worked to educate the community on the facts of HIV vaccine research trials. In addition, the Institute made sure the trials ethically followed international guidelines, including voluntary participation and informed consent. Mr. Kaleebu reported that recruitment was initiated by newspapers, flyers, pamphlets, posters and community mobilizers that helped spread the word. However, he also indicated that there is low female participation, due to women being afraid to obtain permission to participate from their husbands.

In closing Mr. Kaleebu, made it clear that their activities at the Institute have received high political support from the President of Uganda and they will continue to participate in longer trials. In addition, there has been good political support for behavior changes in the community, and he believes having strong political support is essential to combating this disease.

Highlights from the United States Conference on AIDS
1. AIDS Action at USCA
The 10th annual United States Conference on AIDS (USCA), sponsored by the National Minority AIDS Council (NMAC) took place in Hollywood, FL from September 21-25, 2006. The 2006 USCA conference theme was “rejuvenate, revitalize, and remember.” The conference featured over 150 institute sessions, seminars, workshops, and round tables. The program tracks included: Building Healthy Organizations, Care and Primary Care, Housing, International Issues, Nutrition, Prevention, Public Policy, Special Issues, and Treatment and Research. USCA serves as an opportunity for providers, consumers, advocates, and policy makers to learn, educate, and network. In the words of Paul Kawata, Executive Director of NMAC, “Each event will help you (attendees) get the information you need to build your skills and return to your agency with a renewed sense of dedication. This year’s USCA is also about remembering those fighting this epidemic on the front lines.”

AIDS Action is a USCA Program Partner. As a Program Partner, AIDS Action hosted a Policy Institute entitled HIV Prevention in Seven Heavily Impacted Jurisdictions: Successes and Challenges with Linkages between HIV Prevention and Care and Treatment on Friday September 22, 2006. The institute featured Council Members of the Urban Coalition for HIV/AIDS Prevention Services (UCHAPS). UCHAPS represents seven cities in the United States with over one-third of the cumulative AIDS cases in the country: Chicago, Houston, Los Angeles, New York, Philadelphia, Washington D.C, and San Francisco.

During the Institute community and health department representatives from each city shared information about their successes and challenges with developing effective strategies for linkages of services from HIV prevention to care and treatment. Three cities: New York, Chicago, and Washington DC, gave peer technical assistance (TA) presentations on this subject in an interactive fishbowl setting. This set up allowed conference attendees the opportunity to witness and engage in the peer TA presentations. UCHAPS utilizes peer TA presentations at its quarterly meetings throughout the year. The three presenting cities provided their HIV epidemiological profile before discussing their successes or obstacles in connecting prevention and care. It was the goal of the institute that participating attendees could identify with the presenting jurisdictions and utilize their ideas in connecting prevention and treatment.

UCHAPS Council Members from New York City presented first. Their presentation was focused on the collaborative efforts of the New York City HIV Prevention Planning Group and Ryan White Title 1 HIV Planning Council. It is this collaboration that is helping New York City make successful connections between HIV Prevention and Treatment and Care. In New York City the Director of the Office of HIV/AIDS Policy and Community Planning (OHAPCP) is the Governmental Co-Chair of both the Prevention Planning Group (PPG) and the Planning Council. Staff of both the PPG and the Planning Council are housed in OHAPCP with some staff assigned to dual roles on both committees. This greatly contributes to the success of linking prevention to treatment. The presenters explained that the principal barrier to combined prevention and treatment and care planning is the very different federal and legislative regulatory mandates of the two planning bodies. By joining the responsibilities of the planning bodies important connections between prevention and treatment can be forged. New York City served as an example of how other jurisdiction’s HIV response can include full collaboration of treatment and prevention as a goal.

The Chicago Department of Public Health has also adopted a collaborative planning process for prevention and treatment. Chicago Council Members presented next on the ways they have started to embark on this collaborative effort. They have forged a partnership between their PPG and Planning Council and have engaged in a variety of activities to enhance communication and information sharing across groups. Presenters gave examples and explained the collaborative activities such as joint meetings of the planning bodies, joint planning body leadership trainings, and regular updates at each planning body’s monthly meetings. The Planning Council and Prevention group approved cross representation to help share expertise and resources to better inform each body and ensure that efforts were not duplicated. In May of 2005 Chicago formed an HIV Prevention and Care collaboration workgroup which began meeting quarterly in May 2005. This workgroup has been the start of success, but Chicago still has next steps and aspirations in the collaborations of prevention and care.

The District of Columbia, while also striving to connect HIV Prevention and Care, shared the obstacles the city faces in doing so. Collaboration between prevention and care has been discussed for years in the District, but new leadership in the Administration for HIV Policy and Programs has just recently made this an explicit goal of its administration. The District faces unique challenges most prominently the dual role of the District of Columbia with the region as a city and state agent. The city has a history of infrastructure and capacity challenges of the health department and community agencies. The Washington DC EMA for care and treatment spans 3 states and the district. The prevention area encompasses only the District. A large lack of cross-jurisdictional coordination of services as well as unequal funding across jurisdictions makes collaboration difficult for the District, which hopes to overcome this difficulty by taking lessons learned from fellow UCHAPS jurisdictions

While other UCHAPS jurisdictions did not give a formal presentation of ways that they are connecting HIV prevention and care, each jurisdiction provided printed presentations to the Council and Institute participants.

AIDS Action also participated in The AIDS Institute workshop entitled “The 2006 Reauthorization of the Ryan White CARE Act: Does It Meet the Need?” on Saturday September 23. Donna Crews, Director of Government Affairs was a panelist along with Ryan Clary, Project Inform; Carmine Grasso, New Jersey Department of Health and Senior Services; and Kathie Hiers, AIDS Alabama and Southern AIDS Coalition (SAC). Carl Schmid of The AIDS Institute served as moderator. The session offered an opportunity to discuss H.R. 6143 that had just passed out of the Energy and Commerce Committee three days prior to the workshop, on September 20, by a vote of 38 – 10.

Mr. Schmid opened the panel asking the question “Does the Ryan White CARE Act Meet the Need?” He emphasized that the reauthorization of the Ryan White Care Act has been overdue since September 30, 2005. He commented that community based organizations and Members of Congress have been working hard on this bill for over two and half years. He then offered the panelists the opportunity to give their opinion and insight on the CARE Act. .

Mr. Grasso gave an overview of the bill as it now stands. He explained that a loss of funding is a chief concern of the states that have an older AIDS epidemic as the bill works to shift the limited Ryan White CARE Act funds to the rural south where the HIV epidemic has been steadily increasing. He focused his concerns with the bill on 6 outstanding issues: inclusion of code based data; hold harmless and funding issues; severity of need index; early diagnosis grant program; unexpended funds; and administrative burdens and unfunded mandates.

Mr. Clary explained that the CARE Act will never meet the true need because it is not an entitlement. It is subject to yearly funding battles, and it is dependent on strong national commitment to Medicaid and other health programs at the state and federal level. He also shared Project Inform’s reauthorization principles: The CARE Act works and its general structure should be maintained and targeted, increased appropriations could address most problems; and states in need should get fiscal relief without large shifts in funds from other areas.

Ms. Crews spoke next; she explained AIDS Action’s position of support of the bill with continued concerns over Hold Harmless, Funding Concerns, the Early Diagnosis Grant Program, Data Concerns, and ensuring that states that have recently adopted name based systems and who have not fully reported HIV cases are able to avoid destabilization of their services. AIDS Action has been working together in coalition with AIDS Alliance for Children, Youth and Families, Communities Advocating Emergency AIDS Relief Coalition, National Alliance of State and Territorial AIDS Directors, National Association of People with AIDS, National Minority AIDS Council, and Project Inform. Ms. Crews also shared with the audience information from the last two meetings between the community stakeholders and the bi-partisan/bi-cameral committee staff. She explained that on Monday, September 11th community members explained quite clearly that a prevalence test had to be added to the eligibility of jurisdictions to Title I tier 1 and tier 2 and Title II emerging communities to ensure that areas with high AIDS prevalence and low AIDS incidence over the past five years remain eligible. On Friday, September 15th the staff changed the prevalence/incidence issue to include and count all people living with AIDS in the eligibility for jurisdictions. The last piece that Ms. Crews shared was the fact that in this version of the CARE Act the HRSA portion of the Minority AIDS Initiative is codified into law, this portion will no longer be only in report language of the House Appropriations Committee.

Ms. Hiers was the last panelist to comment. She focused her comments on SAC’s support for the provision of core medical services over support services in the bill so that state’s that have newer epidemics can provide medical services to their cliental. She acknowledged that the shifts in money will be difficult for some jurisdictions, but said that there is a need in rural areas for increased Ryan White CARE Act funding. She recognized that there is a great need for overall increased funding in the act, but the inadequate funding levels in the South must be addressed.

AIDS Action staff members participated in sessions throughout the conference as well as maintained an AIDS Action booth at the exhibit hall. This booth contained information from AIDS Action as well as materials from our members.

CARE ACT in Brief
1. Ryan White CARE Act Passes House
As of the time of this report the Ryan White HIV/AIDS Treatment Modernization Act (also referred to as the CARE Act) had passed the U.S. House of Representatives and had been extensively debated in the Senate. Senator Michael B. Enzi (R-WY) requested that S. 2823, the Senate version of the CARE Act be passed by unanimous consent three times. Unanimous consent requires that every single Senator agree to the bill. Both times the motion was stopped by Senators who placed a “hold” on the bill.

On Tuesday, September 26, 2006, Senator Enzi requested unanimous consent that the Senate pass the CARE Act. He explained that the bill had passed in the House Committee on Energy and Commerce last week, however, he added, “Senators from three states are blocking the vote that would speed reauthorization programs that provide life-sparing treatment to individuals suffering from HIV and AIDS.”

Mr. Enzi continued to express the need for a unanimous consent vote for the reauthorization of the Ryan White Care Act, claiming that if it is not passed by September 30, “several states will be slated to lose funds.” He reiterated that “we must ensure that those infected with HIV and living with AIDS will receive our support and our compassion, regardless of their race, regardless of their agenda, regardless of where they live.”

Senator Mark Dayton (D-MN) objected to the request on behalf of other Senators, who, he stressed, “want to join the program.” On their behalf, he noted that the Senators object to the permanent reduction in funding for their respective States which would occur under the formula the chairman referenced.” He also claimed, “They share my hope, along with the chairman that this issue can be satisfactorily resolved for all concerned before the expiration, September 30th.”

Senators Tom Coburn (R-OK) and Richard Burr (R-NC) echoed Mr. Enzi’s urgency to pass the reauthorization. Mr. Coburn expressed his disappointment that the bill would not be passed, extending his disappointment to those not receiving the treatment and care. Mr. Burr explained a need for equity for all individual HIV and AIDS patients who need the money, saying “the money should follow the patients.”

In closing, Mr. Enzi reflected on the work of the bipartisan, bicameral fashion in completing the reauthorization of the Ryan White Care Act. He concluded that Congress can swiftly clear compromise legislation through both Chambers by October 1st. He feels it is absolutely essential that this clear by September 30.”

To read the complete discussion from the Congressional Record (text version), please use this link:
http://frwebgate4.access.gpo.gov/cgibin/waisgate.cgi?WAISdocID=3697978489+0+0+0&WAISaction=retrieve

On Thursday, September 28, the House version of the CARE Act (H.R. 6143) was brought to the House floor for debate and vote. During the debate, four Representatives spoke in favor [Deal (R-GA), Bono (R-CA), Barton (R-TX), Ros-Lehtinen (R-FL)] and eight spoke against [Pallone (D-NJ), Waxman (D-CA), Engel (D-NY), Towns (D-NY), Kelly (R-NY), Solis (D-CA), Waters (D-CA) and Pascrell (D-NJ)].

Representative Deal started the debate stating, “I believe that we must reform the unacceptable status quo for the benefit of those suffering from HIV/AIDS across our great nation.” He said that he felt that under the status quo, many patients are not receiving medical services and are on waiting lists for treatment because CARE Act funds are being spent on non-medical services in some states. He also stressed that the current bill is unacceptable to the tax-payers and unacceptable to those suffering from HIV/AIDS.

Representative Pallone spoke next, saying that he was speaking “with great regret” and stating several reasons why the bill is flawed, most obviously that is under funded. He said the bill would result in the loss of much needed CARE Act dollars in his state of New Jersey, and that this bill penalizes states like New Jersey which have kept people alive and prevented new infections.

Representative Bono next asked her colleagues support for this bill, the product of bipartisan and bicameral efforts. She pointed out that in bringing together systems of care from across the Nation that significant compromises have been made in the interest of providing care to the individuals who need it the most. She stated that she believes no one wants to reduce funding for HIV services in any jurisdiction she asked for Congress to carefully consider the existing disparities.

After a voice vote which the chair said passed the bill, Representative Pallone (D-NJ) called for the “Yeas and Nays” requiring a recorded vote.

To read the complete discussion from the Congressional Record (text version), please use this link:
http://frwebgate3.access.gpo.gov/cgi-bin/waisgate.cgi?WAISdocID=55524214485+0+0+0&WAISaction=retrieve

The House then voted and passed the Ryan White HIV/AIDS Treatment Modernization Act at 10:25 p.m. on Thursday evening. Since the vote took place on whether to suspend the rules it required a 2/3 majority (which is 291 votes) to pass. The vote was 325 - 98.

At the same time action on the CARE Act was taking place in the Senate. At 8:30 pm on Thursday September 28, 2006 Senator Enzi again asked unanimous consent that the Senate pass S.2823 on the Ryan White HIV/AIDS Treatment Modernization Act on the Senate Floor. He called on the five Senators from New York, New Jersey, and California who have holds on the bill to debate the issue. He provided charts and funding analysis showing that New York and New Jersey would still receive funding per AIDS case above the national average.

Senator Mark Dayton (D-MN) objected to the unanimous consent motion on behalf of a Senator (or Senators who have the holds), although Senator Dayton himself planned to vote for the bill. He thanked Senator Enzi for the courtesy of warning him of his intention and saluted him for his leadership on this legislation. He made the point that under the bill hold harmless is only in effect for three years, and at that point states would stand to lose money. He said, “I find it unsurprising that they (Senators holding the bill) are doing what any of us I believe would do, which is protect our states.” He asked what it would cost in additional authorization to give these states over the next 5 years the same amount of money as they presently receive. Senator Enzi responded to Senator Dayton’s question by stating that the Senate has an obligation to the entire United States of America, not just the state that elected them.

In a similar fashion to the Floor debate on Tuesday, Senators Tom Coburn, Richard Burr and Jeff Sessions then spoke about the need to pass reauthorization. Generally the Senators along with Senator Enzi sought to portray NY, NJ and CA as being isolated in their attempts to hold the bill. No other Senators debated. Senators Hatch (R-UT) and Sen. Santorum (R-PA) submitted comments for the record

Senator Enzi spoke last and stated that he would seek cloture tomorrow (Friday September 29th). Cloture is a method of limiting debate or ending a filibuster in the Senate. At least 60 Senators must vote in favor of overriding cloture.

The full Congressional Record of the Senate Debate can be found:
http://frwebgate3.access.gpo.gov/cgi-bin/waisgate.cgi?WAISdocID=55582916346+0+0+0&WAISaction=retrieve

Finally, on Friday, September 29, 2006, Senator Enzi brought the CARE Act back to the Senate floor around 6:00 p.m.. He again called for the Senators who have placed holds on the bill (stating that the California hold was removed and the only holds remaining were from New York and New Jersey) and asked them to defend their holds. He also offered a vote on a bill introduced by Senator Frank Lautenberg (D-NJ). Senator Lautenberg’s bill (S 3944) would extend the current reauthorization (using AIDS measurements for the formula) for one year. A companion bill, HR 6191 was introduced in the House by Representative Frank Pallone (D-NJ). The bill text has not yet been posted on the Library of Congress website. Senators Jeff Sessions (R-AL) and Orrin Hatch (R-UT), who was an original sponsor of the 1990 bill, spoke in support of the Enzi bill. Senator Menendez (D-NJ) objected to the unanimous consent motion and the motion was defeated..

Proponents have stated that the CARE Act must pass the Senate before October 1st. If they cannot get unanimous consent to pass the bill, the Senate may attach the CARE Act to another bill that must pass before they adjourn. Holds do not apply to bills that are attached only to those bills that stand alone. As of the time of this article, the bill had not passed the Senate. However the Senate did not appear likely to adjourn and go into recess until later this weekend.

AIDS Action will be closely monitoring Senate activity on the Ryan White CARE Act throughout the weekend.

Announcements
1. Senate and House to Recess until November
The U.S. House of Representatives and U.S. Senate begin their fall recess this weekend, September 29, 2006. Both the House of Representatives and the Senate will return to Washington DC on Monday, November 13, 2006. Members of Congress will be returning to a lame-duck session and are expected to work on remaining appropriations bills including the Labor, Health Human Services and Education Fiscal Year (FY) 2007 Appropriations Bill.

Most Members of Congress will be campaigning in their home states and districts for the November 7th election during this fall recess. All Members of the House of Representatives are up for re-election and 1/3 of the Members of the Senate are up for re-election.

This recess provides constituents with an opportunity to contact and meet with their elected officials while they are at home to discuss the issues that are important to them prior to Election Day. AIDS Action urges our members to meet with their elected officials and let them know about the importance of increased appropriations for HIV prevention, treatment, and care. Constituents can reach their Members of Congress by calling their district offices and scheduling a meeting with the officials.

For more information about how to schedule and conduct a meeting with members of Congress see AIDS Action’s publication, “Advocacy Basics” here: http://www.aidsaction.org/legislation/pdf/advo_basics_meetings.pdf

Contact information for Senators and Representative can be found by zip code at http://capwiz.com/aac/dbq/officials/.

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.

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