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Tuesday, June 6, 2000
Morning General Council Session
Angela Thrasher of MOSAICA opened the meeting. After a review of the previous day's proceedings, Council members began formulating major themes of the report.
Themes of the Progress Report: Ms. Aragon suggested that a theme can be defined as the articulation of major messages to come out of the report. Ms. Thrasher suggested that examples of themes might include the need to "sell" prevention as policy to the public or the elimination of structural barriers to access to health care.
Todd Summers said that the report should also expand, rather than shift, previous themes, so that domestic agendas are not seen as being sacrificed to the global effort to combat HIV/AIDS and that everyone who requires services is recognized. In addressing equal access to care as a thematic element, specific recommendations could include expanding funding sources, such as Medicaid, as well as the expansion of infrastructure funding and other elements.
Dr. Gomez said that success in dealing with HIV/AIDS depends on the courage of leaders both in the United States and worldwide.
Ms. Fraser-Howze said that expansion of vision and strategic planning are not gratuitous but are in direct proportion to the expanding course of the epidemic, including the political will required to meet the public health crisis of the century, which includes domestic and global efforts.
Mr. Bau said that it is important to demonstrate that the epidemic has expanded and to combat common public perceptions to the contrary. Another internal perception may be that an interconnectedness exists between domestic and global arenas and that a continuum of prevention and care strategies also is in place. Thus, another theme could address the need for integration of domestic and global efforts.
Ms. Aragon referred to the previous day's discussion in which the human dimensions of the disease were discussed and that a sidebar approach with examples would be effective. She said that at all levels, the human face of HIV/AIDS should be visible.
Mr. Summers suggested that the larger issue of actual commitment to taking on the epidemic is perhaps the first step, because at the present time, this commitment appears to be lacking, both nationally and throughout the international community. He said that prevention has been significantly undervalued. Although $750 million is spent by the CDC, $1.8 billion at HRSA for Ryan White CARE Act, and NIH is allocated $8–9 billion for HIV/AIDS, less than 10 percent is devoted to prevention. Prevention services should be prioritized, along with treatment and support services, for both people with negative and positive HIV status.
An observation was made that AIDS is not "over" until it is over for everyone. With the use of protease inhibitors and a decrease in the death rate from AIDS, the public perception is that HIV/AIDS is not a crisis.
Mr. Dellums defined a theme as the hook that delivers the essential message. He emphasized that HIV/AIDS is a global pandemic and constitutes the great moral imperative of our time. The human family is in jeopardy. However, the disease is preventable and no one group or nation "owns" it. As a tragedy of monumental proportions, it requires a monumental global response, public-private partnerships, and committed leadership that is proportionate to the issues. It is beyond race, gender, age, class, borders, and sexual orientation.
He said that rather than debate methodology, a profound commitment to action is the first order of magnitude and it is not certain if this commitment has been made. Thus, the issue of commitment constitutes a major theme.
Mr. Dellums explained his focus on mutual self-interest. He stressed the urgency of understanding the impact of racism and oppression. If everyone understands that it is in their self-interest to deal with the pandemic, the likelihood is greater that effective action will occur. In conversation with African leaders, he encouraged them not to take ownership of the issue; otherwise global efforts would not be forthcoming to resolve it. When the public understands that everyone is vulnerable, the possibility is greater that commitment will be forthcoming.
Mr. Miguel Milanes said that one of the major themes should be finding a cure for HIV/AIDS.
Dr. Gomez expressed concern that focusing on a cure might lead to the "medicalization" of the epidemic, which detracts from the emphasis on prevention.
Mr. Milanes clarified that another way of approaching this theme is to say that HIV/AIDS is solvable with the courage and the right leadership and resources. PACHA can construct a road map toward this solution.
The point was made that perhaps the ultimate prevention is a cure, and that if that has been the "mantra" for more than two decades, perhaps it should be. Cure is necessary precisely for those that are most vulnerable—the most disenfranchised—and that support should be reaffirmed for finding a cure.
Mr. Jack Jackson emphasized responsibility to youth and future generations.
Another comment concerned reducing transmission through vaccines and a cure, which encompasses research and behavioral issues. The concept of HIV/AIDS being a threat to the "human family" is a powerful one that embraces many issues such as building a community response, reducing social stigmas, developing infrastructure, etc.
Human rights was brought up as a basis for historical references regarding access to health care. The issues of prevention and equal access to HIV/AIDS care and treatment were supported as excellent themes that also embrace issues related to development of the basic infrastructure accessibility. Another comment concerned the importance of telling the truth about HIV/AIDS throughout the report.
Mr. Dellums expressed support for including human rights as a topic of the report. He said there are countries throughout the world where human rights is not being addressed, and that the United States is in the position of advocating that no one country is entitled to avoid treating the thousands if not millions of people who would die without attention.
Dr. Victoria Sharp credited Dr. Jonathan Mann for his contributions to the human rights dimension of the issue of HIV/AIDS prevention and treatment. The signatories of the International Declaration of Human Rights included the United States, thus providing an historical and legal basis for this position. Mr. Anderson added that the issue of human rights should be couched within a legal framework. There is an existing body of international agreements that many governments have signed but which is routinely violated. He said this can be seen in areas where people are being discriminated against, do not have access to care, or are becoming infected by virtue of human rights violations; invariably this is where these agreements are being violated. He said that an address by Peter Piot discusses HIV/AIDS efforts throughout the world in terms of these human rights agreements and is a valuable framework for considering these issues.
Ms. Reyes-Jimenez said that one of the reasons she got involved with Housing Works was that the organization recognized the right of all people to food, shelter, health care, and other basic needs. She supported including references to human rights issues in the report.
Review of Themes: Ms. Thrasher reviewed themes. They include (1) expanding the approach to the epidemic rather than shifting it from the domestic to the global environment; (2) equal access to care, including capacity building, training, infrastructure development, and other issues; (3) the belief that success will be a function of courageous and committed leadership to address the moral imperatives necessitated by the epidemic; (4) educating the public to the accelerated rates of infection; (5) interconnectedness of domestic and global care; (6) emphasis on the human dimensions of the disease; (7) the importance of commitment as the foundation of strategy; (8) the undervaluing of prevention as demonstrated by funding disparities; (9) HIV/AIDS is preventable and prevention should be always kept in the forefront; (10) the crisis is not over until it is over for everyone; and (11) the urgency of addressing the pandemic.
Rabbi Edelheit said that the word "crisis" is problematic; one cannot be in "crisis" for 15 years, as this is not physically and emotionally possible and cannot be sustained. He suggested finding appropriate discourse to describe the level of crisis that has been sustained and that perhaps exhaustion is more apt than "lull" to describe current attitudes.
A series of statements to be made by the report include: (1) AIDS is a global pandemic; (2) AIDS requires a moral imperative; (3) AIDS challenges our mutual self-interest; (4) AIDS is a preventable disease; (5) AIDS is an unprecedented tragedy that requires an unprecedented response; and (6) public and private partnerships are required as well as aggressive and committed leadership.
Rabbi Edelheit suggested that the word "human" may be preferable to "global" in that it does not imply an automatic association to the idea of the "domestic" dimension of HIV/AIDS. He said that global consciousness has to be dealt with, but that to emphasize the human dimensions is perhaps a more powerful approach.
Mr. Dellums said that his discussion of AIDS as a threat to the human family was meant to challenge individuals to appreciate their stake in coming to terms with the epidemic. He said that for him, the term "global" does not have "international" connotations. The use of the term "global" implies interdependence, increasingly complexity, and increasingly vulnerability. The term "global" represents an encompassing idea that refers to the human family's existence on a "tiny spaceship called Earth" that implies mutual inter-reliance.
Rabbi Edelheit said that it is important to define terms so that the term "global" does not contain nuances of international dimensions. Mr. Dellums said it is important to care about a life in West Oakland to the same degree as we care about a life in Soweto. To the extent this is not the case, education is crucial. Human life must be respected as having equal value throughout the world. Mr. Anderson said that since the report is going to President Clinton, the use of the word "human" may have less range than the term "global."
Mr. Isbell supported Mr. Dellums' comment that a passion for human life cuts across national boundaries and urged reference to it in the report. In addition, he said that the Council must stress that solutions are achievable. He said that while the epidemic is unprecedented, that if the UN recommends $2–3 billion to address the epidemic, this is still a negligible sum. While the HIV/AIDS epidemic is unprecedented, solutions are within range.
Ms. Fraser-Howze said that the word "human" associates easily to the idea of human rights and issues of legality that should be invoked.
Mr. Bau said that current complacency is clearly a function of homophobia and racism. The public is less concerned with the HIV/AIDS pandemic because its current epicenter is Africa. Much of the American public is going to remain passive for this reason.
Mr. Dellums was emphatic in stating that PACHA's responsibility is educative. By starting where people are, it may be necessary to enter the "envelope of ignorance" to lead them out of it. Responsibility should not be shirked. Because civil rights leaders challenged ignorance and bigotry throughout the United States, progress was made. HIV/AIDS is a threat to the human family, and ignorance should never be acquiesced to, even though it is pervasive. He urged that the Council begin with the status quo.
Mr. Bau urged caution, however, that PACHA does not "preach to the choir," and repeated that a significant portion of the population remains uneducated and may remain unmoved.
Mr. Anderson said he is struck by the fact that partnerships had not received greater emphasis in terms of working with rather than for communities, and that assumptions about passivity and powerlessness on the part of those communities are unacceptable.
A comment was made that many of the most effective scientific and research organizations are in the United States and that it is imperative to recognize our responsibility to think beyond the national community. Another comment referred to "tears" in the fabric of the global tapestry, such as racism, sexism, and homophobia and that HIV/AIDS shines a harsh spotlight on these problems, creating an opportunity to repair the damage. The idea of the AIDS quilt represents this notion of interconnectivity. Those who have died should be acknowledged as having created the foundation for a global dialogue.
Dr. Sharp responded to Mr. Bau's comment by urging the Council to take leadership, and the more difficult positions, rather than capitulating in any way to public ignorance of the dimensions of the epidemic.
An overarching theme is that HIV/AIDS will impact the world, not just those who are currently infected.
A sustained effort is required, as the epidemic will not end, perhaps even within the next decade. The report should clarify that many different approaches are important and will all take time to implement.
Mr. Dellums referred to the controversial statements made by South Africa's President Mbeki. He said that he would have hoped to have told him after his visit to the United States that no one attacked President Mbeki because of his unique position, and that rather than focus on less appealing medical treatment for HIV/AIDS treatment, President Mbeki should "step up to the plate" and make demands on behalf of South Africa, because the world is anxious to comply.
He said that those who have historically been victims continue to see themselves in that light but that with a brief window of opportunity available to him now, President Mbeki should assert South Africa's need for funding to address the epidemic in their country. The world should look back in the future and realize that at least one body was able to take on the challenge of the HIV/AIDS pandemic.
Mr. Dellums urged that the report embrace partnerships with all key stakeholders so that it is not viewed as elitist or arrogant.
Ms. Aragon spoke of feedback from the public at large that information about HIV/AIDS changes and creates confusion. She said that the message should be that what is true today might not be true tomorrow and that mobilization is critical.
Mr. Montoya urged members to consider what their respective communities are seeking, rather than becoming insular.
Mr. Summers said that the needs of youth should be kept in the forefront in considering the future course of HIV/AIDS.
Mr. Burden referred to disparities in access to care and said that social justice might be another organizing theme. Essential quality of life issues should also be included in this context. He asked whether subcommittee sessions should focus on listing issues related to major themes and if so, how far to take them. He said that advocacy groups should be mandated to propose actual strategies.
Ms. Thrasher agreed but deferred to Mr. Montoya's direction.
Further Issues: Mr. Montoya explained MOSAICA's role, in responding to a question about the process of writing the report. He said that MOSAICA is facilitating the discussion toward developing the framework/outline of the report and will write a first draft of the report. A team of Council members will volunteer to meet before July 6, when the report is due, to review the draft and edit or revise it.
A discussion ensued about the day's agenda and how to structure subcommittee meetings to draw up specific recommendations. Mr. Bau suggested that subcommittee members make a commitment to locate the human stories and statistics to be included in the report. Dr. Gomez asked whether sections such as prevention should be highlighted and addressed as separate components of the report.
Mr. Montoya suggested that Prevention and Services Subcommittees remain in tact and that all other topics be included within task forces. All content should be framed within a discussion of racial, ethnic, global, and other issue areas.
A schedule of conference calls should be made available.
Mr. Burden said that research should not be omitted.
Mr. Montoya said Dr. Gayle and others involved with the research component, although not present at the meeting, will contribute content related to research and that members could begin writing and review the document for possible omissions.
Rabbi Edelheit referred to previous unanimous agreements to raise racism and ethnicity to the status of the primary, all-embracing issue. He said that as a result, black and Latino caucuses would align with PACHA and expressed concern that these issues would now be relegated to task forces and be diminished in importance. Rabbi Edelheit said that it is difficult to make a state of emergency a "constituent element" in prevention and services.
Mr. Montoya confirmed Rabbi Edelheit's position and said that these priorities will be addressed within the opening sections of the report.
Rabbi Edelheit asked that "task force tags" be checked as they pertain to prisons, research, and all other report components.
Mr. Dellums declared that racism must be addressed as it impacts the spread of HIV/AIDS. He said that although $10 billion is being spent by this country on AIDS, that only $150 million has been allocated to the black community. Minorities cannot continue to be compartmentalized but must assert the full measure of their individual citizenship. The rights and responsibilities of minority citizens is not negotiable or debatable. Somehow this point must be addressed. He asked Rabbi Edelheit to clarify his fear around this issue.
Rabbi Edelheit said that it is essential to discuss racism and ethnicity within the context of their impact on HIV/AIDS, and that this statement was not articulated 2 years ago within the Council. At that time, the emphasis was on making sure that ethnic and racial communities got a "slice of the pie."
Mr. Blackwell said that as the only voice representing Native Americans on the Council, he was initially rebuffed in his offer to assist the African American effort. He said that he intentionally did not become involved in the Racial and Ethnic Minority Committee because his observation was that American Indian issues were not adequately recognized in terms of research, prevention, and services. He acknowledged the progress of the Council in embracing issues of colored peoples and that his participation speaks volumes about this shift.
Ms. Aragon expressed appreciation for Rabbi Edelheit's comments and supported the rejection of the term "task force" with regard to racism and ethnicity. If the Council is meeting its mandate, these issues must be central and prioritized when considering all other aspects of the HIV/AIDS pandemic.
Ms. Reyes-Jimenez said that having urged consideration of minority issues among the Council before joining it, it is noteworthy that issues that still remain unresolved or that have not been addressed in any substantial way are those concerning racial and ethnic populations. She said that in reviewing reports written 2 years ago that supposedly focused on this dimension of the HIV/AIDS epidemic, she found that the 1996 and 1997 reports devoted only one sentence to blacks and Latinos.
She said that she does not view herself as a token member of the Council but that her role is to address issues relevant to her constituents. She spoke of wanting ideally to serve on both subcommittees simultaneously to prevent the marginalizing of these issues. She said that the Council has at times approached ethnic and racial issues intellectually, with the result that they were put on a "very slow trajectory."
Ms. Duran said that as a new member of the Council who represents her constituents as a lesbian, as a woman, and as a Latina, her view is that the Council does reflect diversity. However, equality does not exist in the "real world" and that her role is to ensure that the Hispanic community has a voice and that the Council's efforts reflect this perspective.
Ms. Duran clarified by saying that the state of emergency that came out for people of color referred to the "African American community and all other minorities." However, it was not reflective of all other minorities, particularly in terms of funding distribution. She said that when she was asked to join the Council, she spoke to the chair of the Congressional Hispanic Caucus to say that Hispanic members of Congress were not vocal and did not step up to the plate to claim a proportionate share of the HIV/AIDS budget. She reiterated that her role on the Council is to ensure that it does not lose sight of the necessity to equally distribute resources and funds to communities of color. The problem still exists and should be addressed from the vantage point of racial and ethnic minorities.
Mr. Dellums appreciated Ms. Duran's comments and acknowledged that he is relatively new to the Council, as well. He said that $10 billion is being spent annually on HIV/AIDS, that 42 percent of the people dying of AIDS in America are African American and 28 percent Latino, or a total of 70 percent of HIV/AIDS victims are people of color. He said it would appear to the lay person that 70 percent of funding should be allocated to these populations.
The overall strategies must change and expand to reflect this reality, rather than simply allocating "a few dollars" here and there to address minority concerns. He said that the process must be changed throughout the entire system to engage everyone as citizens rather than "set asides." He encouraged an aggressive, forward-moving approach, while considering particular concerns.
Mr. Summers said that a significant portion of the $8–10 billion being spent on HIV/AIDS is serving people of color and that it is somewhat inaccurate to compare it with the figure of $150 million. The initiative should be discussed in terms of more accurate aligning of funding so that they address the trajectory of the epidemic. He expressed concern, however, that discussions regarding proportionality speak against the one-family concept. This can result in overlooking groups that do not receive large allocations.
Dr. Gomez said that many people who have been affected by the epidemic sense injustice. When HIV/AIDS was viewed as a "gay" disease and one that affected drug addicts, it received little response from the American public. As the epidemic has grown, 70 percent of women infected continue to be African American and Latina. This has been true since the 1980s and is still the case. A significant proportion of funding has been spent on the "worried well," heterosexual population in the United States because of a reluctance to address the issue as it impacts minority and ethnic communities. She stressed that these realities not be lost in the report.
She said that a consideration of ethics had been initiated within the Council but that she would be more direct in speaking to the injustice of this country's approach to HIV/AIDS. She suggested that the Council explore ways of addressing this issue through specific recommendations.
Mr. Bau said that there is a perception that the minority community has received what it requested and that this is distressing in that it supports a "business as usual" agenda. He stressed that it is important to not lose any momentum gained in this regard.
Ms. Duran suggested that subcommittees make explicit recommendations to bolster policies that would expand resources and address inequities in prevention, testing, and other types of funding.
Mr. Dellums suggested that PACHA members meet within their respective subcommittees and reconvene at 2:00 in the full Council.
Afternoon General Council Session
Mr. Montoya reviewed Services Subcommittee activities. Three conference call times were established: June 20 at 12:00 noon, June 27 at 2:00 p.m., and July 5, 12:00 noon, all EST. The Prevention Subcommittee also established June 16 at 3:00 p.m., EST, for a conference call. An Executive Committee meeting is scheduled for 12:00 noon on June 27.
Dr. Gomez noted that subsequent Prevention Subcommittee conference calls would be likely.
Mr. Montoya urged PACHA members to be flexible in order to respond to conference calls that may come up without the opportunity for advance notice. No changes have occurred in the Executive Committee schedule, although there may be some additions.
The Global Health Council distributed a sign-on letter for members to take back to their respective organizations regarding impending legislation in the Senate and House of Representatives. Members are also permitted to personally sign onto the letter.
Mr. Montoya said that no responses had been forthcoming from the Secretary. Another meeting will be arranged with Mr. Dellums, the Secretary of the Surgeon General, and Kevin Thurm to review issues discussed in March as well as PACHA's current discussions regarding the progress report.
Mr. Dellums asked members to relay any suggestions or ideas that he could bring to that meeting.
Mr. Anderson said that he distributed a speech by Peter Piot on human rights that he had referred to in the previous day's session. The speech references a document that can be located on the UN Web site, at <www.unaids.org>, entitled The International Guidelines on HIV and Human Rights. The document is detailed and cites all of the international agreements for various areas in which human rights action is recommended.
Ms. Thrasher said that a list was distributed of all the ideas pertaining to themes and content of the progress report that were discussed in the morning session as well as some initial thoughts on how to integrate these with larger themes and goals. She noted that there would be overlap in several areas, which is common. Time would be limited for consideration of particular items, but the Council could agree on five or six of the major ideas proposed, which include:
Ms. Thrasher invited PACHA members to review the list of themes.
Discussion: A suggestion was made that services could be included under the theme of commitment, with regard to the need to expand them. It could also be regarded as a separate theme.
A recommendation was made to design more specific themes that action items could be written to address. Another comment concerned the need to incorporate stigmatization of drug use.
Dr. Gomez said she would assume that specific areas would flow from outlining overarching themes. She asked whether recommendations would include research, practice, and policy and what action items to address. As examples, she mentioned that prevention may include specific recommendations for vaccine and microbicide development and other intervention models as well as providing specific models for prevention practice. Also, policy recommendations may involve focusing on barriers to access, sex education, and other items.
Mr. Dellums remarked that comprehensiveness should be stressed as well as poverty, in terms of its impact HIV/AIDS.
Dr. Gomez said that these issues were discussed within the Prevention Subcommittee and have made recommendations that link the broader definitions of prevention to a discussion of poverty as a factor in the AIDS epidemic.
Mr. Bau suggested that the idea of HIV/AIDS as a potentially unifying force and an opportunity to focus energy and resources on racism and poverty be highlighted as a positive approach.
Ms. Reyes-Jimenez said that it is important to address the underlying life situations that make people vulnerable to HIV/AIDS such as housing, addiction, and, most importantly, mental illness, which has been noticeably absent in other reports.
Ms. Aragon said that the Services Subcommittee discussed, under the rubric of access to health care, the need for a broad definition that includes mental health and substance abuse, as well as housing.
Dr. Gomez referred to her ongoing study of HIV-infected injectors. She said that in interviewing them, what has emerged is the "commodification" of AIDS and the view of study participants in impoverished settings that their infection actually increases their quality of life by opening opportunities for housing and health care. She said this underscores the lack of resources for people who have to become infected with a potentially lethal disease in order to receive services.
Ms. Duran referred to Peter Piot's paper in urging that messages pertaining to human rights can be very compelling when repeated within a legal framework.
Ms. Thrasher asked members for guidance as to whether to proceed toward expansion of themes. A question was raised about how themes will be incorporated within the report. Ms. Thrasher responded that the themes will constitute the preamble or introduction to the report as well as being a kind of "bedrock" that define overarching issues. For example, social justice may be a theme, but will be accompanied by specific recommendations regarding its application to prevention and other sections throughout the report.
Ms. Thrasher then drew the Council's attention to the report-writing process and the draft outline. MOSAICA will draw up an initial draft and submit it to the Council for editing and further additions. She then described the draft outline as consisting of the Executive Summary based on the main report, to be followed by a preamble and/or introduction that will discuss ethics and task force issues, among other items.
Mr. Summers suggested that a discussion of the imperatives should precede concrete items, which should be as specific as possible in order to hold people accountable for implementing them.
Ms. Aragon suggested page limits of 2-3 pages for the Executive Summary, 1-2 pages for the Preamble/Introduction, 3-4 pages each for Prevention and Service Subcommittee reports, and 3-4 for Conclusions and Recommendations, followed by the Addendum, a total of 12–16 pages for the body of the report.
Mr. Summers urged that the Addendum be organized as soon as possible to provide a reference for content within the report. A prolonged discussion ensued about the timeline for submission of MOSAICA's first draft of the report and whether a Council committee should be appointed. Mr. Montoya suggested Council members could support MOSAICA's initial effort. Dr. Gomez said that the Prevention Subcommittee had started an initial outline that she would e-mail to committee, who would provide an expanded and edited version of this content, which then would be passed onto MOSAICA. Ms. Thrasher said that MOSAICA could then focus on Mr. Minor's initial draft to incorporate the "macro" issues and save time.
Ms. Aragon said that Ron Johnson, Brent Minor, Greg Barbutti, and Todd Summers, representing the Services Committee, would also contribute to the draft.
Dr. Gomez suggested presenting general recommendations immediately after the Preamble, with a reference to more specific strategies later in the text.
Ms. Aragon said it would be helpful to refer these recommendations to the drafting committee. It was decided that the MOSAICA's draft would be submitted by Monday, June 12, 2000, and that the full Council would have a copy by June 16.
Mr. Minor raised a question was raised about whether it was possible to highlight recommendations that President Clinton could immediately act on.
Mr. Montoya said that various technologies are being considered to facilitate access to information, including "driveways" and e-groups with Web sites.
Mr. Burden urged the inclusion of the concept of "the last 100 days" of President Clinton's administration.
Mr. Summers referred to reports produced by other organizations devoted to HIV/AIDS policy, such as the 1993 report by the National Commission on AIDS, and questioned their impact. He urged that this report be submitted so dynamically—including, if necessary, demonstration-type actions—that it will have a powerful impact.
Mr. Dellums spoke of timing, as the report comes at a time when many key players who previously had not focused on HIV/AIDS are entering the arena and "suiting up."
Mr. Summers agreed and said he was speaking to the need to take action beyond the traditional protocol of report submission.
Dr. Gomez suggested coming up with several realistic action items that can be accomplished within the next 100 days by the Clinton administration.
Mr. Dellums called on members' expertise to help pinpoint these actions.
Mr. Montoya referred to the National Commission on AIDS final report. With minor changes, the report could be resubmitted. Leadership, access to health care, the U.S. role, and other items were discussed, accompanied by two recommendations: (1) Leaders at all levels must speak out about AIDS to their constituencies; and (2) a clear, well-developed national plan must be developed for confronting AIDS. These same items could be retained, while amending "national" to "global".
Mr. Minor said initial recommendations to the President should be delivered in person, rather than in a document, which often results in a circular process that can bypass the "naysayers." He urged that the entire Council should meet with the President as soon as possible to discuss both general recommendations and four or five "actionable" items.
Mr. Dellums strongly agreed and asked for clarification about what items should be laid on the table.
Ms. Fraser-Howze said that many Council members are experienced in approaching the President and know what can and cannot be broached. However, he can be urged to address the upcoming national political convention on the topic of HIV/AIDS. She reminded the members that President Clinton held the first White House summit on AIDS, which he did as a result of the strenuous efforts of ONAP and Council members. She said that while it is possible to request Executive Orders in response to specific components of particular legislative packages, to expect action on broad policy questions such as needle exchange is unrealistic. She confirmed that the meeting between the Council and President Clinton should be regarded as an absolute given.
Mr. Dellums responded that the Council should not view itself as other than those advisors appointed by the President, with whom it is imperative that he meet, particularly as HIV/AIDS has been elevated to a national security issue.
Mr. Anderson agreed that it is important to present information to the President in an immediate manner. He said that a level of community and press interest should be generated that would amplify the Council's recommendations. He suggested that the Council's draft should be shared with a host of national organizations and acquire a massive list of endorsers, such as the NAACP and Latino organizations. Leaders of those organizations should participate in a press conference after the Council's meeting with the President who will affirm PACHA's recommendations.
He said that staff are not available within the White House to manage that level of press support. The Council has been most successful when enlisting outside help to generate press coverage, particularly with regard to the needle exchange issue. He urged that members begin taking action on this front so that "buzz" will be generated in advance.
Mr. Anderson suggested sending the report to every candidate who is running for office, to do it in a very public way, and to motivate the press to interview candidates on HIV/AIDS-related issues.
Ms. Aragon urged members to make sure that the FY 2001 appropriations bills are put on the short list of priorities.
Ms. Fraser-Howze agreed, adding that input from communities around the Ryan White CARE Act, the Congressional Black Caucus Initiative, and other legislation could be emphasized as a basis for the President's leadership.
Mr. Summers mentioned inclusion of the supplemental budget request.
Mr. Dellums said that the end game is the final omnibus appropriation and that President Clinton has significant leverage there.
Mr. Summers said it is important to remind President Clinton of the "disconnect" between what he commits to and what actually occurs. He said that a transcript presented to the President of his verbatim remarks made during a meeting at the end of last year, in which he confirmed that significant action would occur around prevention, fell on "deaf ears" and had no discernible impact. The President should commit to working with his chief of staff, John Podesta, and others to keep them on task in determining how promises can be fulfilled and action taken to address the HIV/AIDS epidemic, rather than neglecting to follow through when the meeting with the Council is over.
Ms. Reyes-Jimenez remarked on the fact that it is still not possible to have an international HIV/AIDS conference in the United States. She said she remembers street protests in Amsterdam in 1992 to open U.S. borders to a conference.
Ms. Lewis said that Mr. Gore, Mr. Bush, and Mr. Clinton will all be addressing the NAACP convention (being held the same week as the Durban, South Africa, conference). She asked for assistance from the Council in putting issues before them.
Mr. Montoya urged PACHA members to begin getting the word out about the meeting and impending report.
Ms. Fraser-Howze said that Ms. Thurman worked hard so that Mr. Gore's speech at the convention would incorporate the issue of HIV/AIDS. She said it is critical that the President speak to it at the NAACP meeting, including the global dimensions, so that his comments will not be construed as sound bytes. She stressed particularly the importance of informing Mr. Bush.
Mr. Cristina asked whether the report will meet the mandates set forth by the Executive Order that established the Council and suggested illustrating this with a checklist that would validate the President's expectations.
Mr. Dellums referred to Mr. Anderson's recommendations concerning press strategy and asked members to volunteer with lining up press coverage. Ms. Aragon, Ms. Fraser-Howze, Mr. Johnson, Mr. Anderson, and Mr. Cristina responded. He asked for clarification of recommendations for the last 100 days of the Clinton administration.
One suggestion is that President Clinton use this time to speak out powerfully about the epidemic. A second is continued focus on the appropriations budget.
Mr. Summers suggested that the White House can begin to pull people together by issuing invitations to corporate leaders of multinational companies to discuss public-private partnerships, which would address both domestic and global issues.
Mr. Minor supported the idea of lifting travel restrictions and suggested that further brainstorming with members' respective organizations would be beneficial. Mr. Dellums said that an act of Congress would be required to affect travel restrictions. Mr. Summers said that President Clinton could be enjoined to urge Congress to lift the ban.
Mr. Burden commented on an idea that emerged during the Prevention session. President Clinton should use his influence in Hollywood to meet with heads of major television stations, particularly the Standards and Practices people, and use television to educate the public about transmitted diseases and to eradicate the barrier that prevents discussion of condoms on television. Vice President Gore could also be asked to take action in areas where President Clinton may have been advised not to be vocal.
Dr. Sharp brought up the issue of budget neutrality and asking President Clinton to drop the requirement for it in the Medicaid waiver process, which is realistic.
Ms. Aragon confirmed this and referred to Tom Henderson's remark to the President that his definition of cost neutrality is restricting states' abilities to expand Medicaid coverage to people before they have AIDS. She quoted the President as saying that he would look into it, but that this was thwarted by his staff.
A suggestion was made that a celebrity such Elizabeth Taylor should be enlisted by whatever PR firm works with the Council.
Mr. Burden said that his understanding regarding the idea of urging action within the last 100 days of the Administration is to recommend those that are "short and sweet" and that do not require further discussion.
Mr. Dellums then asked Ms. Thurman to suggest areas for the Council's focus during the last 100 days of the Clinton administration and to recommend other factors to be examined.
Ms. Thurman approved of the Council's recommendations. She confirmed that President Clinton will speak about HIV/AIDS during the convention and has done so in every recent speech during EU meetings and those in Russia. The same request can be made of Mr. Gore and Mr. Bush, with particular emphasis before the NAACP meeting, as the NAACP expects this issue to be addressed domestically and internationally. She said that appropriations should receive particular focus including supplemental appropriations.
Mr. Dellums said that this should occur around the first two weeks in October, during which time an "interesting juxtaposition" of congressional members occurs, with some opting to remain in Washington and others returning home to pursue their campaigns.
Ms. Thurman agreed that it is important to pursue the idea of lifting travel restrictions and that the Council's partners on the NSC also need to be approached about this issue. This recommendation should also go to Sandy Berger, Gene Sperling, and other pertinent Cabinet members. She discouraged holding lengthy meeting sessions as the President's travel schedule may make the opportunity remote. She urged that the Council be strategic with regard to submitting too many requests. She said that President Clinton has committed to meet with business leaders and that Vice President Gore has also spoken about bringing corporate heads together. The chance of scheduling three or four AIDS-related events before the end of the year is remote, as many agenda items are being aggressively submitted at this time. She said that the meeting with the Council is a given and will be perceived as an AIDS-related event. She confirmed that President Clinton is committed to the meeting with PACHA.
Ms. Thurman suggested additional consideration as to ways to engage Mr. Gore, who is still functioning in his capacity as Vice President and may be more accessible than President Clinton. She said that ONAP has been meeting with African leaders individually and will meet with religious leaders in the fall.
Mr. Summers said that keeping both the President and Vice President informed that AIDS will be on the agenda often results in their consulting with Ms. Thurman or other ONAP staff. Ms. Thurman was included in Vice President Gore's trip to Atlanta because he needed someone to brief him before a conference with the NAACP.
He asked Ms. Thurman to review the President's schedule over the next several months to identify other opportunities to "buttonhole" him by people in other venues, rather than using up an "AIDS chit." Religious leaders or other stakeholders who might be available to ask these questions publicly can further enhance public receptivity.
Ms. Thurman recommending targeting Sandy Burger, Donna Shalala, and the Secretaries of the Treasury and Labor, among others. They are authentically engaged and will continue keeping President Clinton aware of issues related to the epidemic.
Mr. Dellums asked Ms. Thurman whether these people could be invited to the Council's meeting with the President.
Ms. Thurman said that the more people who can be brought to the table, the better, and that Gene Sperling and Larry Summers have chaired the last several meetings.
Mr. Dellums asked Ms. Thurman to suggest a final recommendation for the Council to present at the end of December.
Ms. Thurman said that needle exchange is the overarching priority that under a Bush administration would be very difficult to accomplish. She said that it is unlikely during the early days of a new Administration that controversial programs would be initiated. She said that budget neutrality is a good short-term request because it is internal. With regard to funding for additional staffing within the White House, Ms. Thurman said that this will be at the pleasure of the next President, but that it would send a good message to get a commitment in this regard, even if it is not fulfilled.
She said the President cannot go forward independently on needle exchange, particularly with naysayers discouraging it. However, some of the most influential ones are no longer in the West Wing. It is possible to talk to staff within HHS to see whether the issue of budget neutrality can be moved ahead.
Mr. Summers said that some of the countries of the former Soviet Union are using U.S. equivocation on needle exchange as an excuse to not pursue it at home. He asked Ms. Thurman whether President Clinton might affirm the scientific validity of needle exchange, thus eliminating this rationale.
Ms. Thurman said that needle exchange should definitely be on the agenda and would give her an opportunity to "battle it out" with the drug czar. She said the science is clear in this regard and that the issue could be broached with regard to the policies of the former Soviet Union. She noted that this would result, however, in a struggle with the drug czar, who has been talking to people within these countries and is still very opposed to needle exchange programs.
Mr. Dellums introduced Anita Estelle who wanted to address the Council. Ms. Anita Estelle introduced herself as a partner at Van Skoy Associates and a member of the Rainbow Push for Life Coalition that is focusing on HIV/AIDS. She said that Reverend Jesse Jackson was unable to attend the Council meeting, along with his project director, Lydia Watts. She wanted to go on record as saying that the Coalition supports the Council and wants to work as a partner. She said that Reverend Jackson would have written recommendations to Mr. Dellums by Wednesday, June 7.
She said the Rainbow Push for Life has developed approximately $2.8 billion of recommendations for FY 2001. This may be in excess of what can be realistically expected. Ms. Estelle said that the Coalition supports the Congressional Black Caucus effort. With regard to the theme that the AIDS crisis is not over until it is over for everyone, the Council should focus on the need for increased short-term funding for a number of areas, as well to develop a long-term, multi-year funding strategy, rather than taking a myopic year-by-year approach. In this regard, she referenced the Administration's long-term, multi-year strategy for biomedical research, teacher placement, new markets initiatives, development of empowerment zones, defense spending, and other areas. It is essential to implement one in order to develop an effective strategy to end the HIV/AIDS pandemic within the Council's goal of 15 years.
Ms. Estelle recommended working with Eric Goosby, Donna Shalala, and others to do better in this regard than previously in terms of future funding needs, so that the next President will have a baseline for measuring their progress. It is also essential to explore issues related to adolescents and technical assistance (particularly in communities of color where this is limited), as well as the Medicaid waiver. She recommended looking at the HCVA Research and Demonstration Authority as a way to sidestep the waiver possibility. She closed by reiterating the need for a multi-year funding approach to assure that resources will continue to be available to put an end to the epidemic.
Ms. Fraser-Howze said that the Push for Life Initiative is working very closely with a number of organizations that have convened around the state-of-emergency issue. Appropriations requests will be particularly critical at this juncture, as President Clinton leaves office. She said that everyone on the Council should be commended for bringing the issue of racism to the fore, including blacks, whites, and Latinos. This had been a truly inclusive process over the last 3 years.
Mr. Dellums said he spoke for all the members of PACHA in appreciating Angela Thrasher's contribution to the Council proceedings. This meeting is his second as chair, and he said it has been a distinct pleasure to work with people of such high caliber. He commended the Council's process over the last 2 days and said that the impact of the Council's efforts would be felt by a wide public.
Ms. Aragon recognized Daniel Montoya and Renuka Kher, as well as the White House interns who attended.
Mr. Montoya further recognized others who have attended and assisted. Mr. Dellums thanked Ms. Aragon for remembering these acknowledgements and adjourned the meeting.
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Last Revised: May 31, 2005