Feel Good, “Why Can’t We Just All Be Friends?” Executive Reunion Ends in Promises Aplenty
“This Man’s Gonna Cure AIDS”
AIDS policy people from across the country convened in Washington, D.C. recently where they met with representatives from the current administration — Dwight D. Eisenhower executive office building on Wednesday and in the Hubert H. Humphrey Health and Human Services building on Thursday.
From the West Wing: Margaret Spelling (White House Domestic Policy Council), Joe O’Neill (Office of National AIDS Policy).
From the Dept. of Health and Human Services: Secretary Tommy Thompson, NIAID director Anthony Fauci, Chris Bates, Scott Evertz, Terrell Halaska, and Deborah Parham. From the Centers for Disease Control and Prevention: Harold Jaffe and Julie Gerderding.
Representatives from U.S. AIDS groups included: Terje Anderson (National Association of People With AIDS), Bill Arnold (The Title II Community AIDS National Network/AIDS Drug Assistance Program Working Group), Pat Bass (The Communities Advocating Emergency AIDS Relief (CAEAR) Coalition), Chris Collins (AIDS Vaccine Advocacy Coalition), Gene Copello (Florida AIDS Action), Mark Del Monte (AIDS Alliance for Children, Youth and Families), Laura Hanen (National Alliance of State and Territorial AIDS Directors), Mark Harrington (Treatment Action Group), David Harvey (AIDS Alliance for Children, Youth and Families), Ernest Hopkins (San Francisco AIDS Foundation), Ronald Johnson (Gay Mens’ Health Crisis), Paul Kawata (National Minority AIDS Council), Marsha Martin (AIDS Action Council), Benny Prim (NMAC), Leo Rennie (NASTAD).
Conspicuous in their absence at the high level meeting were any voices to represent members and policy goals of HealthGAP and Housing Works. Seems at the proverbial eleventh hour these hard-working folks were unceremoniously disinvited — as knitted brows gazed anxiously up the Atlantic seaboard to what was billed to be a huge anti-government AIDS demo in Brooklyn that day. Mark Harrington prepared this summary of the second day’s proceedings.
A photographer followed Secretary Thompson around the room snapping photographs as he shook everyone’s hand. The agenda was virtually the same as that of the day before, with a few alterations. New participants included Chris Collins from AVAC, Mark DelMonte from AACYF, Benny Prim from NMAC and Leo Rennie from NASTAD.
Thompson: 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 [the Pan-American Health Organization] is having a spring meeting. I wish some of you could come along. I am a pretty nice guy.
Appropriations
Hopkins: One third of the folks who are HIV-positive 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 U.S. 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.
Thompson: 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 [National Institutes of Health] is going to be our salvation.
Hopkins: All the states are in crisis.
Research
Harrington: NIH needs to continue growing healthily at an 8-10 percent per year rate even after the doubling is completed in FY03.
Thompson: I think this man [Tony Fauci] will discover a cure for this disease.
Harrington: We want the Administration’s support on enacting the pediatric rule into law.
Thompson: I do support that. The FDA lawyers threw in the towel [on the lawsuit] before I knew about it.
Rennie: We want the HIV rapid test approved with a CLIA waiver (Clinical Laboratory Improvement Amendments).
Thompson: We support that, but the company has to apply for a CLIA waiver. The President and I support the rapid test — the company has not yet applied for the waiver. Things are moving in our direction.
Fauci: The Secretary is in favor of beyond the OMB [numbers for NIH].
Thompson: When I was in Botswana we talked about the rapid test. “We should do this in the U.S.,” I said.
Fauci: He was surprised we don’t.
Collins: 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.
Thompson: Why even have these meetings? I agree with everything. We need a law on vaccine immunity [for manufacturers] in Congress.
Collins: 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.
Fauci: The Secretary has been aggressive in involving industry.
Prevention
Thompson: Tell Ana [Oliveira] I missed her.
Johnson: 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.
Thompson: Did you hear my speech in Switzerland? [I think he meant Spain.]
Johnson: We want to work with you on getting that message out.
Thompson: Blowing whistles is not helpful.
Johnson: 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.
Thompson: 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 [drug protocols to prevent mother to child transmission of HIV] around the world — Dr. Fauci tells me that [nevirapine] can reduce it by 45 percent — 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.
Gerberding: We are planning a prevention summit in December. It would be helpful to meet with you before then.
Treatment Access
Arnold: 25,000-35,000 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 (Medicaid-tweaking “Early Treatment for HIV Act” that would allow states to include people with HIV in their Medicaid program by adding HIV as an eligible category for coverage. Currently, most people with HIV are ineligible for Medicaid until they reach the Social Security definition of disability). It’s coming up in the next Congress — with heavily bipartisan support — we need your visible support. A letter.
Thompson: 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.
Del Monte: We are concerned about the proposed HRSA [Health Resources and Services Administration] reorganization. We hoped for more community input and dialogue.
Thompson: 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. [Presumably he meant maximize the impact of the dollars.]
Prim: 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.
Thompson: Write me a letter.
Prim: ONDCP (White House Office of National Drug Control Policy) is developing a Presidential strategy on drug abuse. It needs to include coverage of methadone maintenance with Medicare dollars.
Thompson: Is it expensive?
Prim: No. ONDCP and ONAP (Office of National AIDS Policy) ought to be talking.
Global AIDS
Anderson: We appreciate your involvement with the Global Fund, MTCT, GIPA (Grupo de Información et Prevención de AIDS). But the problem continues to grow. We need greater resources. We hope that the MTCT program moves to a new level.
Halaska: Help us get an FY’03 appropriation.
Thompson: I wish you could see inside my heart on this — this is so important.
Anderson: 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.
Thompson: 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 U.S. and Italy have committed a second round of support to the Global Fund. The U.S. cannot fight this war alone. We want to make impact fast with the MTCT program. We want to make sure that succeeds.
Harrington: What are the administration’s plans to put the “Plus” in MTCT? [The “plus” part of MTCT-Plus provides for antiretroviral treatment of the mother as well as the child.]
Fauci: 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.
Martin: We represent 100 percent 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.
Thompson: 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.
Parham: North Carolina [‘s ADAP waiting list] is down to 40 from 800.
Bates: I’m glad that you came. Take the message back.
Fauci: I want to underscore one point. You will hear from people on the Presidential Advisory Council on HIV/AIDS (PACHA), 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.
Johnson: Likewise you will hear discordant voices in our community. You need to listen to those voices and hear the pain behind them.
Thompson: I know some people didn’t come. Who’s not here?
Several: HealthGAP and Housing Works.
Thompson: Should they be here?
Several: Yes.
Thompson: Thanks for coming.