Federal AIDS Policy Meeting Notes |
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30 October 2002–Dwight D. Eisenhower Executive Office BuildingUSG: Margaret Spelling (White House Domestic Policy Council), Joe O'Neill (ONAP)AIDS: Terje Anderson (NAPWA), Bill Arnold (TIICANN/ADAP WG), Pat Bass (CAEAR Coalition), Gene Copello (Florida AIDS Action), Laura Hanen (NASTAD), Mark Harrington (TAG), David Harvey (AIDS Alliance for Children, Youth & Families), Ernest Hopkins (SFAF), Ronald Johnson (GMHC), Paul Kawata (NMAC), Marsha Martin (AIDS Action)Intro & Overview – Gene Copello
Appropriations – Ernest Hopkins
EH: We are concerned that the domestic AIDS accounts have received no new increases in the last two cycles. Discretionary programs are becoming more important – ADAP, RWCA, PPGs, HOPWA, etc. We need significant increases or we will be unable to increase access – this sends the message that the domestic epidemic is being deprioritized. MS: Have you looked at all the funding structures [of Ryan White]? Are you looking at reauthorization – it's a good public policy opportunity. Research Issues – Mark Harrington
Prevention–Ronald Johnson
RJ: Need for leadership. The ten year plateau – 40,000 new cases of HIV infection every year – underscores the importance of continued prevention – especially in the lesbian & gay communities, among young men of color, in women, people of all races. The President and Secretary need to show leadership on this – even within the challenge of post-9.11 work. We need more direct & visible leadership. Need for resources. We're disappointed in the last two budgets. The CDC strategic goals can only be achieved by full funding. The FY03 NORA request for HIV prevention was $1 billion. Prevention needs to be guided by science, not politics. We are discouraged by some trends – a tilt to an abstinence-only approach – we want to have dialogue on a more balanced comprehensive approach – and we are disturbed by the removal of information about condom effectiveness from the CDC website, and by inconsistent messages on HIV prevention from this administration. We continue to be discouraged by the continuing Federal ban on needle exchange programs. We must mobilize the best science available to prevent AIDS – after 21 years we do have science-based approaches that we know work. MS: From an outside perspective it all sounds so good – their science sounds good, and so does yours. I absolutely agree with that – we go through this on the environment, education, etc. – wouldn't it be great if we could sort through that – get some folks who haven't been through this to look at both sides and review the data. For a lay person, it's hard to evaluate [the conflicting claims]. JON: Our support of NIH among other things is intended to lead to the development of better science on prevention. We are trying to approach this on a public health model. [The prevention studies to date] don't always have great p-values. This also needs to include evaluation of abstinence programs. Treatment Access – Bill Arnold / Laura Hanen
BA: Of course Joe is intimately familiar with the main issues with ADAP. There are many closed ADAP programs. People are being removed. We estimate next year 25-35,000 people won't get on ADAP if we don't come up with $162M. LH: With ETHA we are looking for leadership from the President & the Secretary. Give states the option of covering asymptomatic HIV+ individuals on Medicaid states. States that go through the traditional Medicaid waiver run into the OMB regulation on budget neutrality. Three states have gotten approval [for a Medicaid waiver]; only one is on-line (Massachusetts). Spelling and O'Neill indicated interest in ETHA and familiarity with the ADAP issues. Global AIDS – Terje Anderson
TA: The needs are overwhelming. Current levels [of support] don't begin to approach what's needed. There are high expectations here and in Africa about when the President goes to Africa – will there be a new program on the scale that's needed? There is no FY03 budget for global AIDS; there's also a need to ramp up support for FY04. The Administration should get behind the Frist-Kerry-Hyde authorizing legislation ($2.5B/year). There's a strong consensus that that's a good start. In addition there needs to be better coordination among HHS, AID. MS: Is the Global Fund well grounded? JON: Where is it with regard to its relative contribution? How much is in the bank? ... With the MTC initiative we asked for support from HHS and AID to do it together. My office is charged to accomplish coordination–similar to homeland security–it's not business as usual. MH: Put the "Plus" in MTCT–treat the mothers and children, don't just give the nevirapine. Why can't the Administration support bilateral programs and the Global Fund? Is there a coordinated Administration plan for dealing with global AIDS? JON: We need a different kind of plan–we can't wait for all the data and information to come in before doing a plan–so it needs broad strategic goals. We are planning to increase US support for Global AIDS by 82% in FY03. Global includes the US, but we can't impose the same strategic planning process on the domestic agenda. We are addressing it via several elements–the Global Fund, bilateral/USAID programs, plus starting something new – the MTC initiative. ONAP is where the coordination needs to occur – not at State, HHS, etc. TA: Do you have enough staff? JON: We don't have enough space. MM: Where does the Administration sit with care and treatment globally? JON: It's clear that you can't do good prevention without treatment. The MTC initiative is really a treatment initiative. But it's not possible to do it everywhere quickly. We need data/information on what it takes to do it in developing countries. What we need might be to buy generators and dig wells – who can do that? Other pieces – the US is pushing GIPA, NGOs in the Global Fund. Margaret [Spelling] and Condi [Rice] are committed to this. MH: Can we have a follow-up meeting on this [international]? JON: Yes. MM: Include us, engage us, have us all around. EH: People are being shifted off advisory committees. JON: Everyone's used to dealing with HHS, which has structures for this input. This administration likes to put a fly in the ointment–upset the bureaucracy. MM: [Describes everyone's organizations and how they represent the epidemic in the US.] I was told that after the meeting one of the community representatives took up with Joe O'Neill the issue of the exclusion of HealthGAP and Housing Works from the meeting, and that Joe stated that 1) those organizations had a history of being disruptive; 2) if they were coming the meetings would be canceled; and 3) it was important to have the meetings, so they were disinvited. I did not hear this directly from Joe O'Neill. 31 October 2002 – Hubert H. Humphrey HHS BuildingHHS: Tommy Thompson, Chris Bates, Scott Evertz, Tony Fauci, Terrell Halaska, Deborah Parham; Julie Gerberding & Harold Jaffe (CDC) by videoconference; othersAIDS: Terje Anderson (NAPWA), Chris Collins (AVAC), Bill Arnold (TIICANN/ADAP WG), Chris Collins (AVAC), Gene Copello (Florida AIDS Action), Mark DelMonte (AACYF), Mark Harrington (TAG), Ernest Hopkins (SFAF), Ronald Johnson (GMHC), Marsha Martin (AIDS Action), Benny Prim (NMAC), Leo Rennie (NASTAD)A photographer followed Thompson around the room snapping photographs as Thompson shook everyone's hand. The agenda was virtually the same as yesterday's with a few alterations. New participants included Chris Collins from AVAC, Mark DelMonte from AACYF, Benny Prim from NMAC and Leo Rennie from NASTAD. TT: We have a great team here and we are passionate about this. Tony Fauci is the best scientist in the world – [names others present]. Julie [Gerberding] is having a prevention summit in Atlanta on December 4-5 – some of you will be invited. I don't understand why we can't have a better dialogue than demonstrating. I want to be able to work with you. We should be able to pool our resources and work together – I'm concerned about today's [Housing Works] demonstration [in Brooklyn] – it doesn't gain anything. Some of you are concerned about the commitment of the Bush administration to this issue. Some of you think we're more concerned about abstinence [than about HIV prevention]. All we're trying to do is to balance – I think maybe more than some in the White House – you have to have both [abstinence and condoms?] – especially with young African-American gays–try everything. I've been fighting for your stuff. Work with me and Congress to get more money. Can we be more efficient? Help me – I believe in change. I intend to go back to Africa every year if I'm still Secretary. I'm the only health minister in the world who attends the board meetings of the Global Fund. The next big area [after Africa] is the Caribbean. PAHO is having a spring meeting. I wish some of you could come along. I am a pretty nice guy. AppropriationsEH: One third of the folks who are HIV+ are not in care – they are diagnosed but not in care – that's about 350,000 people. The Bush administration has not requested increases for the Ryan White CARE Act. The signal the administration sends to Congress seems unfortunate. We know that the US government has done a significant amount globally, but it's not sufficient – but we should not send the signal that domestic resources have been deprioritized. TT: We have so much money for the Department and then get mandates – it's hard to balance the budget when we have to double the NIH budget [between 1998-2003] even though NIH is going to be our salvation. EH: All the states are in crisis. ResearchMH: NIH needs to continue growing healthily at an 8-10% per year rate even after the doubling is completed in FY03. TT: I think this man [Tony Fauci] will discover a cure for this disease. MH: We want the Administration's support on enacting the pediatric rule into law. TT: I do support that The FDA lawyers threw in the towel [on the lawsuit] before I knew about it. LR: We want the HIV rapid test approved with a CLIA waiver. TT: We support that, but the company has to apply for a CLIA waiver. I and the President support the rapid test – the company has not yet applied for the waiver. Things are moving in our direction. ASF: The Secretary is in favor of beyond the OMB [numbers for NIH]. TT: When I was in Botswana we talked about the rapid test – 'We should do this in the US' I said. ASF: He was surprised that we don't. CC: We hope and expect that Dr. Fauci will find a cure, a vaccine and a microbicide. It's time to start thinking about more incentives for private investment in these prevention technologies. TT: Why even have these meetings? I agree with everything. We need a law on vaccine immunity [for manufacturers] in Congress. CC: Look at incentives like those being used for manufacturers of anthrax or smallpox vaccines. Provide purchase guarantees. Address regulatory, purchase, liability issues. Start developing programs to distribute vaccines and microbicides globally. ASF: The Secretary has been aggressive in involving industry. PreventionTT: Tell Ana [Oliveira] I missed her. RJ: Based on some of your opening statements let me say that we need more visible leadership articulating a sound, science-based approach to HIV prevention. TT: Did you hear my speech in Switzerland? [I think he meant Spain] RJ: We want to work with you on getting that message out. TT: Blowing whistles is not helpful. RJ: That reflects the impression of a hostile attitude [by this administration] because of the CDC audits, the Inspector General audits. There are real issues of accountability but the perception of hostility [from the administration] blocks the ability to appreciate how audits can augment our programs. Second, we need resources – full funding for CDC efforts. We're glad to hear about your concerns for young gay men. Third we need science based prevention, not politics. We are concerned by a tilt towards abstinence and are pleased by your commitment to a comprehensive approach to HIV prevention. Abstinence has a place, but not abstinence alone. TT: When I was governor [of Wisconsin] I was the first to put money into prevention for HIV/AIDS – especially being Republican. This thing is huge. I'm sure all of you supported Al Gore over George Bush. I want you to get to know us. I want to be your friend, partner, associate. Now with the audits, you've got to realize that not everyone agrees with you and me – in Congress. When you take Federal dollars and have a sex party or a gay stripper – you're going to have audits. Maybe you should use other money to hire a stripper. Audits are there to find out what's working. I believe in audits. Prevention is the hallmark of our administration – AIDS, diabetes, obesity, smoking – we are passionate about prevention. We are eager to do MTCT around the world – Dr. Fauci tells me that [nevirapine] can reduce it by 45% – that's huge! Maybe we should have another, longer meeting on audits. I don't want you to view this as a witch-hunt. The best way to handle these things is for you to bring in your concerns – I don't mind criticism as long as it's productive. JG: We are planning a prevention summit in December. It would be helpful to meet with you before then. Treatment AccessBA: 25-35,000 will need ADAP in the next 18 months. But ADAP can't carry this forever. Two to four years down the road we are going to need ETHA. It's coming up in the next Congress – with heavily bipartisan support – we need your visible support – a letter. TT: A lot of people on both sides of the aisle are committed to this. We want to focus on what's effective. Treatment is effective. We want to do everything possible. MDM: We are concerned about the proposed HRSA reorganization. We hoped for more community input and dialogue. TT: I've given Betty Duke the responsibility to make this administration more effective. We are making management changes to make this Department more effective. We are so fortunate to have these outstanding people changing the direction of this Department. I'm still not sure we're spending all the dollars as effectively as we could. We want to get your ideas on how we could do that – maximize the dollars. BP: As a senior citizen, if I am addicted to drugs, I cannot get Medicare to cover methadone. Or if I am a PWA on disability – I can't get Medicare to cover my methadone. That's abominable. TT: Write me a letter. BP: ONDCP is developing a Presidential strategy on drug abuse. It needs to include coverage of methadone maintenance with Medicare dollars. TT: Is it expensive? BP: No. ONDCP and ONAP ought to be talking. Global AIDSTA: We appreciate your involvement with the Global Fund, MTCT, GIPA. But the problem continues to grow. We need greater resources. We hope that the MTCT program moves to a new level. TH: Help us get an FY03 appropriation. TT: I wish you could see inside my heart on this – this is so important. TA: I'm alive because I had the good fortune to be born in America. Continue leadership with the Global Fund. Challenge other countries to give more. Get authorizing legislation passed – the Frist/Hyde bill. We hear there's a meeting at the White House on AIDS tomorrow. We hope that authorizing legislation will be part of the discussion. There are high hopes for the President's trip to Africa. We need more action, more resources. AIDS is causing a thousand September 11ths every year. TT: People don't realize what's going to happen to this world when AIDS gets into India, China – governments collapsing, economies failing. It will wash back onto America's shore unless we fight now. I'm embarrassed by the failure of other countries to recognize this. Only the US and Italy have committed a second round of support to the Global Fund. The US cannot fight this war alone. We want to make impact fast with the MTCT program. We want to make sure that succeeds. MH: What are the administration's plans to put the "Plus" in MTCT? ASF: The ultimate purpose is to treat the family. It's very difficult to ask for the next step when we're not at the first step. This administration is results-oriented. We want to see some progress, then move to the next level. The Secretary is committed to the next step. MTCT is a very good start. MTCT-Plus is better. Even beyond that is even better. MM: We represent 100% of the domestic epidemic here. We are the domestic response to this epidemic, with a proud history. We want to make a new beginning. We need leadership, support, partnership. We're asking for a partnership/collaboration, an open door relationship. TT: I've been accessible since the day I came in here. We should probably have another meeting in February or March. I'll speak out – but when I go to your organizations – at least wait to demonstrate until you hear what I have to say – I'm willing to meet you more than half-way. DP: North Carolina ['s ADAP waiting list] is down to 40 from 800. CB: I'm glad that you came. Take the message back. ASF: I want to underscore one point – you will hear from people on PACHA ad the Administration – and someone will say 'There they go again!' – but it's not the Secretary. Not everything you hear [from others in this Administration] will make you happy. RJ: Likewise you will hear discordant voices in our community – you need to listen to those voices and hear the pain behind them. TT: I know some people didn't come. Who's not here? Several: HealthGAP and Housing Works. TT: Should they be here? Several: Yes. TT: Thanks for coming. |
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