TRANSCRIPT OF PROCEEDINGS NATIONAL COMMISSION ON ACQUIRED IMMUNE DEFICIENCY SYNDROME * * & Washington, D.C. September 19, 19939 Pages 303 thra 405 Volume II MILLER REPORTING COMPANY, INC. 507 C Street, N.E. Washington, D.C. 20002 546-6666 MILLER REPORTING CO., INC 507 C Street, N.E Washington, DC 20002 (202) 546-6665 NATIONAL COMMISSION ON ACQUIRED IMMUNE DEFICIENCY SYNDROME Tuesday, September 19, 1989 2:00 p.m. Washington, D.C. 303 MILLER REPORTING CO., INC. 507 C Sureet, NE Washington, DC 20002 (202) 546-6665 COMMISSIONERS PRESENT: June Osborn, Chairman David Rogers, M.D., Vice Chairman Scott Allen Diane Ahrens Harlon Dalton Don Des Jarlais Eunice Diaz Donald Goldman Larry Kessler Charlies Konigsberg Belinda Mason J. Roy Rowland Irwin Pernick [Representing VA] David Newhall [Representing DOD] STAFF PRESENT: Maureen Byrnes, Executive Director Carlton Lee, Chief Liaison Officer Thomas Brandt, Director of Communications 304 a ae a ee a — ae OP Fe 305 CONTENTS _ PAGE Presentation to Commission by ‘ General Services Administration General Counsel 308 Staff Briefing on Legislative Action and Commission Administrative Business 323 Follow-up to Issues and Plans discussed on Monday, September 18 367 MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 (202) 546-6665 MILLER REPORTING CO., INC, $07 C Sueet, NE. Washington, DC 20002 (202) 546-6665 306 PROCEEDINGS CHAIRMAN OSBORN: I want to thank those of you who have come to be with us for your patience. We apologize. The combination of a rainstorm and a very interesting visit to the Whitman Walker Clinic delayed us enough so that we have delayed you, but we appreciate your patience. As I came in I heard a bit of news from one of our staff that I think is worth sharing with the commissioners and all of you. This epidemic is so difficult that I think we have to learn to celebrate small successes as well as large ones, and we have to learn, above all, to celebrate things that don’t happen if we are really committed to prevention. But in this context it is the small successes I’m talking about. Evidently somebody was watching us on C-Span last night or yesterday and was so much moved by Willie’s testimony that they called in and asked how they could work it to help pay for his medical care. So that’s a very small success, but it 1s a bit of measurable progress that I thought everybody else would feel quite good about. MILLER REPORTING CO., INC $07 C Street, NE Washington, DC 20002 (202) 546-6665 307 With that introduction, this afternoon we have an agenda that was already full before we began to add things to it, and we have now added some things. we have a draft statement here concerning the upcoming appropriations bill that we will probably want to consider. We talked yesterday about possibly trying to make a statement, or at least prepare to make a statement, concerning the need of access to treatment for drug users on demand, and we want to be able to discuss that. Then we have a legislative update that is going to be quite full. And I know that Mr. Cal Snowden has a lot to tell us, too. So we will try and make as rapid progress as we can and we will appreciate it if everybody bears with us. Cal, do you want to proceed at this point? And I know that you are compressing your presentation already, but if we can, as much as possible, we would appreciate it, because we do have a heavy work load and the commissioners will start having plane schedules to worry about after awhile MR. SNOWDEN: Dr. Osborn and members of the MILLER REPORTING CO., INC. 507 C Sereet, NE Washington, DC 20002 (202) 546-6663 308 Commission, welcome to GSA. It certainly is a pleasure to continue to serve you as your administrative services provider. Today we are going to have two representatives from GSA speak to you. One is Chuck Howton, and he is from the Committee Management Secretariat. Their primary responsibility is the FACA, the Federal Advisory Commission Act. He will spend a few moments with you, and at the conclusion of his presentation, I will talk to you about the travel regulation and travel procedures as they will relate to the Commission. COMMISSIONER ROGERS: fThank you, Cal. MR. HOWTON: Good afternoon, ladies and gentlemen of the Commission and guests. As Cal said, I am Chuck Howton from GSA’s Committee Management Secretariat. Now, that sounds like a long fancy name, but that is the name given to us in the Federal Advisory Committee Act of 1972, and we quite simply. are under that law responsible for all matters relating to federal advisory committees. So on behalf of my office and our director, Mr. James Dean, I‘d like to welcome you also here to GSA, and I do appreciate your need for MILLER REPOATING CO., INC. $07 C Street, NE. Washington, DC 20002 (202) 546-6663 309 the compression time here, so I would like to limit my remarks principally to the Advisory Committee Act, itself, and where in our feeling a Commission like this fits in the universe of what is often called the fifth branch of the government, quite frankly. And with that comment I’d like to point out that the Advisory Committee Act as enacted in 1972 was one of the earlier open government or what is now generally known as access laws in the United States. The only law preceding the FACA, as we like to call it, is the Freedom of Information Act of 1967. Now, I know of particular concern to members of a Commission like this is what are the key - provisions of FACA that apply, and it is very interesting to look at the history of access laws and to see that FACA originally incorporated provisions governing meetings that were very similar to those in the 1967 FOIA involving the public’s access to documents, which are, of course, after the fact, and the type of exemptions that an agency might call into play when it would make a legal determination that perhaps such documents could be withheld. MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 (202) 546-6665 310 Now, with FACA coming along in 1972, you are dealing with a law that is governing an activity that 1s taking place literally as we speak, if you will. Now, FACA’S original provisions for the openness versus closure meetings are patterned almost chapter and verse, if you will, after those in the FOIA. And again, to speed up our history lesson a little bit,. in 1974 the Government in the Sunshine Act was enacted, which did apply to meetings of collegial bodies of federal agencies, and also by reference incorporated all advisory committees under the ambit of the Government in the Sunshine Act. It has been told to us over the years by not only people who participated in the drafting of this law, but also by our current Congressional oversight, which is lodged principally in the Senate Committee on Governmental Affairs and the House Committee on Government Operations, that the cornerstone of the Federal Advisory Committee Act is in fact the open meetings provision. In addition to that part of the law, which is substantial, is a system of management and operation MILLER REPORTING CO., INC. 507 C Sueet, NE Washington, DC 20002 (202) 546-6665 311 of advisory committees in the entire Executive Branch, and I'd like to emphasize Executive Branch there. This covers, of course, commissions established by the President, himself, such as the predecessor Commission to this one, and commissions of note such as the Space Shuttle Challenger Investigation Commission, the National Economic Commission, and Three-Mile Island, going back a few years earlier, commissions established directly by the president, commission established by the Congress in law, such as this Commission here, to advise both the President and the Congress, and commissions established by heads of federal agencies under general authorities in Title V where an agency head must consult with GSA to make some required determinations on essentiality and balance and openness that would otherwise be made in a public law in order for this kind of Commission to be established. So it may be of some interest at your convenience to take a look at the two documents that I have provided for you today, one of which is brand new and actually fits the bill for a forum such as. “te is a one page flyer which ultimately will be printed and MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 (202) 546-6665 312 folder in this nature. That’s the reason why it is stamped "Draft," you all are in fact the first Federal Advisory Committee to receive this document. And our printing and distribution people tell us until it is so printed it is still a draft, but the content is there and it will provide you with the major aspects of the Federal Advisory Committee Act, both operationally and administratively, which we at GSA will be primarily working with your executive director and staff over the course of the life of your Commission. I think one of the key things to remember under the Advisory Committee Act is that all meetings have to be open unless a legal determination is made to go into closure. Now, what I’m taking about here primarily are meetings in which the deliberative business of the Commission is transacted in accordance with its statutory authority. That is not to say that other discussions cannot be held in other forums, in other areas, and in certain different contexts than an actual deliberative meeting. " To go into closure does require a legal determination, and GSA staff and the staff of the MILLER REPORTING CO., INC. $07 C Street, NE Washington, DC 20002 (202) 546-6665 313 Department of Health and Human Services, as I understand it, will be working with your staff in insuring that this determination is properly made should closure be requested and warranted, and that all federal laws that come into play here--not only FACA but Sunshine and the rules and regulations governing the publication of meeting notices in the Federal Register in advance, for instance, that all of these kinds of details are taken care of for you ina legal and proper manner so as to make your work much easier that you can go into what I like to call the deliberative process of the mission of your assignment by the Congress and this law. So if you would, I enjoin you, rather than to read parts of this to you, to do look over this brochure. It has been developed literally by a staff of more than 20 people from Executive Branch agencies who manage almost one thousand of these committees on an ongoing basis. And the other document you have in front of you is our centerpiece. We at GSA, the administrator of GSA has, in fact, been assigned most of the responsibilities of the President of the United MILLER REPORTING CC., INC. 507 C Street, NE Washington, DC 20002 {202} 346-6665 314 States, by delegation, that fall under the Advisory Committee Act. Of course, we do not appoint members such as yourselves. That is, of course, reserved for the appointing authorities, either specified by law or by the President. But GSA does fulfill many of the President’s responsibilities, one which is to report on the status of all Federal Advisory Commissions in the government on an annual basis to the Congress, and the document that you have here is the summary volume of the previous fiscal year report of the President of the United States. And this illustrates one of the requirements, of course, that we will be working with your staff on, and that is the preparation of-this report, which will cover such information as the current members’ financial information, expenditures as well as estimates, and other levels of activities such as dates of meetings and names and dates of reports. The Congress in the FACA has provided for this report to be done every year simply to keep the Congress and the public informed of the activities. As I said, over one thousand--you are one of over one MILLER REPORTING CO , INC. 507 C Street, NE Washington, DC 20002 (202) 546-6665 315 thousand public advisory committees in the government at any time whose responsibilities are either lodged in or work with more than 60 federal agencies. And I might point out that HHS, in fact, is the single largest customer of the one thousand. This department has at any one time approximately 250 committees. So I might say that there is a substantial amount of expertise, not only here in GSA, but also in HHS in our management and our legal staffs, and we are absolutely certain that we can make your work easy and do anything you need for us to do. And with that, I’m available for any questions you might have, if that’s appropriate, if we have that time. : CHAIRMAN OSBORN: Thank you very much, Mr. Howton. Are there questions? We appreciate your time and-- MR. HOWTON: By the way, let me just check before I say that it is~-our telephone number is in this brochure under the "For more Information" column, and we do have a staff of a director and analysts who work with all of these commissions and we would be more MILLER REPORTING CO , INC. $07 C Screet, NE Washington, DC 20002 (202) 546-6665 than happy to of anything that you need. very much. CHAIRMAN OSBORN: 316 Thank you Thank you. MR. SNOWDEN: I’m going to deal with the more mundane issue of travel and how we get you reimbursed for you travel to and from Washington and to those areas where you will be doing the business of the Commission. Carlton is passing out some literature that I will go through. Let me just speak very briefly and say, this coverage sheet that you will see on this document was developed for the President’s Commission on Catastrophic Nuclear Accidents. Your administrative officer will be preparing such a sheet for you that will tell you where to send your travel vouchers, but the information that is contained on this form is universally applied to all federal agencies and small commissions. Does everyone have a copy of this package now? Let me speak very generally to the travel regulations. You are governed, as employees or MILLER REPORTING CO., INC 507 C Strect, NE Washington, DC 20002 (202) 546-6665 317 representatives of the federal government, by the federal travel regulations which specify how much you can charge the federal government. You are required to travel, when you use air fare, by economy class. We cannot pay first class fair, only under certain circumstances, and that determination will be made by your executive director if there is a medical problem or there is just no other travel available. But the rule of thumb is that you must travel economy class. The General Services Administration has engaged, to help you facilitate your travel, a travel agency which has been assigned to you. We have also established a travel Diners Club account for you where your tickets can be charged against that travel account. Your administrative officer will probably be making your travel reservations. The way that we want to operate is this. This package contains an explanation sheet. I will not read it to you. I would ask that you take some time to read the front and back. It identifies that you should Sign a copy of your travel voucher and a worksheet and send it to your administrative officer. For the CSET aa. MILLER REPORTING CO., INC. 507 C Sueet, NE, Washington, DC 20002 (202) 546-6665 318 purposes now, your offices will be available within the next two weeks. Your offices will be located at 1730 H Street, N.W., which is only two blocks from where we are now sitting. But until you move into your office places, I would ask that you send your travel vouchers to this address where they can be assembled and I can give them to your acting administrative officer, the address that appears on the back, which is 7th and D Street, S.W., to the attention of the National Commission on AIDS. I would ask that you fill out this worksheet. This worksheet itemizes, tells what your expenses are while you are conducting the business of the Commission. I would then ask you--and this is very important--to sign the third sheet that accompanies that, which is the travel voucher. Sign where it says "Traveler" or "Claimant." What will happen is your administrative officer will take that worksheet, fill out this travel voucher for you, submit it to Kansas City and a check will be dispatched to your home. MILLER REPORTING CO., INC. 507 C Sueet, NE Washington, D.C 20002 (202) $46-6665 319 Now, travel expenses. While you are on travel if you have a taxi fair that exceeds $25, you must have a receipt. Any meal or anything that exceeds $25, you must have a receipt. But you are limited. Let's say in Washington, D.C., the overall per diem for Washington is $121; $87 lodging. That means that your hotel expenses cannot exceed $87, and meals and incidental expenses cannot exceed $34. Now, that does not mean that you cannot have a hotel bill room rate of more than $87. You will only be reimbursed at the rate of 87, and it is important if you pay a higher rate than $87 that you record that on your voucher, because you can use that at the end of the year for tax purposes. So let me be very clear again. Even if you pay more than $87, the federal government will only reimburse you for that $87, but all other expense that exceeds that $87 can be deducted from your income tax at the end of the year. Any questions about that? COMMISSIONER KONIGSBERG: Does that $87 include taxes or not? MILLER REPORTING CO., INC. 507 C Sueet, NE Washington, DC 20002 (202) 546-6665 320 MR. SNOWDEN: That includes taxes. Now, we will work to get a tax exempt for the Commission so you won’t have to pay federal taxes, but you will pay local taxes. MS. BYRNES: Dr. Konigsberg, as we indicated in the correspondence, it is certainly the staff's intention to make your arrangements ahead of time as often as possible, if not every time, except on an individual basis when that is determined to be Commission travel, and we certainly would be looking for accommodations that would be lower than the per diem. But we would be trying to do that ahead of time so that there isn’t a lot of question about what the rate would be in a particular city or a particular state. MR. SNOWDEN: And those rates do very from city to city, they do vary. I have no other information to share and I thank you for your attention. COMMISSIONER GOLDMAN: I have one question. Generally speaking, how long is the lag time between the submission of forms and information and the time ae a Pee ee T MILLER REPORTING CO,, INC, $07 C Street, NE Washington, DC 20002 (202) 546-6665 321 when we actually receive a check? MR. SNOWDEN: Five days from the day that our Kansas City office receives your voucher a check is issued; five days. COMMISSIONER GOLDMAN: And how long does it take to get to Kansas City? MR. SNOWDEN: What we will probably do is THL those out, and I don’t know, it--one of the problems would be--if you do your homework right and your worksheet is correct and Maureen and her staff don’t have to call you a lot to get clarification, it will expeditious. But if, you know, there is a lot of clarification that needs-- COMMISSIONER GOLDMAN: I am just curious. I still haven't gotten reimbursed for the first meeting in the first week in August, and I’m just wondering whether that means something has gone awry. MR. SNOWDEN: Well, that first week in August, that was Public Health Service. I don’t know how they handle that. But GSA, we process checks in five days. When we get the travel voucher if there is no problem we process it in five working days. MILLER REPORTING CO, INC. §07 C Street, NE Washington, DC 20002 (202) 546-6665 322 MS. BYRNES: Somehow it becomes a complicated process. I assure you this was one of the things we tried to work as quickly on as possible this week, and we'll make it our business, at least administratively, to understand the process, be very clear about where the time lags are, and move it along as quickly from you to us and then from us to them, and then we’ll figure out how we deal with them if it becomes too slow. But certainly one of the things that Lu Verne and Patty and others have spoken about is to try very hard to move that paper quickly since we’ll be moving quickly and taking many trips and many site visits. - I can’t promise you a fast turnaround, but I can promise you that we are going to pay a lot of attention to this and try to do this. COMMISSIONER KONIGSBERG: I should tell you that from traveling many, many, many times, reimbursement through HHS, CDC specifically, about eight weeks and maybe longer, and that’s with the paperwork right. CHAIRMAN OSBORN: FDA I have it up to three MILLER REPORTING CO , INC, 507 C Suect, NE Washington, DC 20002 (202) 546-6665 323 weeks. MR. SNOWDEN: Thank you. CHAIRMAN OSBORN: Thank you. I think that brings us to the point in our agenda where we were going to have the staff briefing. I’m pleased with that because I know that Dr. Konigsberg has to go early because of the travel arrangements. Let me turn this over to Carlton if we can find him. MS. BYRNES: In fact, if someone wouldn’t mind trying to find out where Carlton might have stepped out for a moment, I will proceed with some of the administrative issues that I thought I would go over real quickly, since that sort of follows from - where Cal left off, and then when Carlton comes back in he was prepared to give you an overview of the legislation and appropriations process. Very quickly, I asked Dr. Osborn and Dr. Rodgers if we might spend a little bit of time today just reviewing some of the administrative and budgetary issues associated with the Commission. And one of the things I went back and looked at was to see in total not how they devised the budget and what was MILLER REPORTING CO., INC. $07 C Street, NE Washington, DC 20002 (202) 546-6665 324 allocated for what, but in total how much did the Presidential Commission spend in nine months. They traveled a great deal, they focused on a lot of issues, tissues, they tried to move very quickly. Again, not to use it as a benchmark but in fact for some comparison purposes in terms of what the proposed appropriation for our Commission is right now. And interestingly enough, the total amount that I’m told the Presidential Commission spent for one year--although much of the activity and budgetary expenses took place in the last nine months of that year--they spent $1.5 million. It is my understanding that they initially had budgeted for approximately 950,000 and found that given the staff travel, consulting, real estate in terms of office space needs, they actually spent $1.5 million. We were authorized at$2 million, not including the cost for staff. Like many pieces of legislation, the proposed appropriations for the Commission does not meet the proposed authorization. The House of Representatives’ appropriation bill that MILLER REPORTING CO , INC. 507 C Sucet, NE Washington, DC. 20002 (202) 346-6665 325 was approved included a $1.5 million budget for the Commission for 1990. The Senate Appropriations reported bill out of committee, not yet passed by the full Senate, includes an appropriation of $1 million. What will happen now is once the Senate bill passes the entire Senate, it will go to conference with the House of Representatives and an agreement of some sort will be arrived at between the $1.5 million and the $1 million. The conferees can agree to the House number of 1.5, they can agree to go to the Senate number of 1. They can agree to go some place in between, which is not an uncommon practice when they, quote, split the difference when there is a difference of approximately $500,000. The other piece that I would share with you is that the history of that conference has been that sometimes once agreements have been reached, the total bill of which the National Commission is a relatively small part, is spending more money than it in fact is authorized to spend and an across the board cut is imposed on the entire bill, so that the Commission could be looking at a percentage cut from the agreement ee ee Tah tie MILLER REPORTING CO., INC 507 © Sereet, N E. Washington, DC 20002 (202) 546-6665 326 that the House and Senate conferees had arrived at. I don’t want to be too complicated about that, I just want people to understand how the process will work in terms of getting a final appropriation. We may well get the House approved $1.5 million, but even if the conferees agrees at $1.5 million and wind up spending too much on the Labor-HHS bill, that $1.5 million could be cut, whatever the appropriation across the board cut might be. Part of the negotiations right now in getting a final bill for the Department of Labor and Health and Human Services and Education will involve negotiations in the Senate and the House, as well funding the drug strategy, either President Bush’s strategy or an alternative that the Democratic and Republican members are negotiating right now. Part of the thinking--although this is only one option and there are many others--is the possibility of an across the board cut on all domestic programs, and I’m not sure what the plans are for some of the Defense programs. But that could result in even a lower number than the high of $1.5 million. MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 (202) 546-6665 327 COMMISSIONER DALTON: I take it both of those figures are exclusive of staff? MS. BYRNES: Those figures would include the expenditures for staff. You don’t get a separate appropriations for staff. The authorization indicated two numbers, one in terms of what the basic operational needs for the Commission would be, not including staff cost. The $1 million and the $1.5 million would need to accommodate staff costs as well as basic operational expenses for the Commission. COMMISSIONER DALTON: Okay. I-- MS. BYRNES: Harlon, essentially the authorization would have beens2,750,000. COMMISSIONER DALTON: That’s exactly what I was understanding. MS. BYRNES: Thank you. COMMISSIONER GOLDMAN: When will you be preparing the budget? [I mean, will you wait until you figure out what we are getting before you prepare a budget, or have you already begun the process or preparing the budget? MS. BYRNES: I’ve already started spending MILLER REPORTING CO., INC. 507 C Street, N E. Washington, DC 20002 (202) 546-6665 328 money. COMMISSIONER GOLDMAN: We have some money through October 1, anyway, right? MS. BYRNES: That is correct. We had a transfer of funds from the Public Health Service through the GSA to the National Commission on Acquired Immune Deficiency Syndrome. We have a account, and it would be my expectation--and I’1ll be working with the budget officers at the Public Health Service--that that money will extend for as long as everyone else is extended for 1989. I don’t know if the Labor-HHS bill will be signed into law by the first of October. I am going to make sure we are carried along with everyone else in the Department of Health and Human Services and the Public Health Service. I’m budgeting on that amount of money right now. I’m anticipating better than a million dollars, and some place around 1.5 as our appropriation when I look at budgeting for what we can afford for rent, travel, consultant services, as well as staffing concerns. But to be perfectly candid, I’m really looking at what I think are realistic expenditures, UE le a lk ae ~ woe oe ata ‘Bed MILLER REPORTING CoO., INC 507 C Sureer, NE Washington, DC 20002 (202) 546-6665 329 going-ahead and doing that since we have the pot of money right now and we need to get started, and then would like to talk with the Commission as a whole again perhaps in November when there has been a final appropriation and I can brief you more fully on what the actual recommendations would be for how we would budget that overall dollar figure. But I'm concerned that it is not much money when you think about how much be need and want to travel as a group to places that are not always easy to get to or get around in, where you need to rent cars or different kinds of things that are these necessarily all that much of a concern when you are on a regular business travel. COMMISSIONER SCOTT ALLEN: JI am just curious what one meeting would cost, something like this, to get a little perspective on this. Not necessarily this one, but do you know an average of what one would cost? MS. BYRNES: I don’t. I could get that number for you, but I don’t know. We billed the rooms and the air fare and we’ll certainly look at that, but I don’t know what an average figure is. MILLER REPORTING CO, INC 507 C Street, NE Washington, DC 20002 (202) 546-6663 330 COMMISSIONER DALTON: I guess I just wanted to register my concern. I’m not sure there is much you can do about it, not sitting in either House. But I'm concerned to learn that the Presidential Commission spent a million and a half, in that I, for example, was invited to speak before that Commission but was told that I would have to pay my own way, my own air fare, because they didn’t have money for travel for people to come to them. And if they still, with those kind of constraints, spent a million and a half, it is quite worrisome. MS. BYRNES: I would anticipate we would encourage that of other witnesses before the Commission. I think we need to have a clear recognition that if you invite people for particular reasons with particular perspectives, I would hope that the Commission would be interested in covering those expenses when it is necessary, when it is appropriate, but I share that concern, Harlon. That's partly why I have raised it. It is not a lot of money when you think about what the task is, and I think the level of energy that the Commission wants to put into the MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 (202) 346-6665 331 variety of activities that the Commission is going to conduct. I don’t want to stay too long on that point. That, I guess, to some degree is my sell for why we need to be very thoughtful and very cognizant of costs and how we travel, where we travel, and those kinds of policy related issues. COMMISSIONER DIAZ: I think the thing that concerns me most and one of the things I talked to you the very first day is that I’m afraid that a great portion of that budget is going to be used for staff costs, and rightfully so. The other Commission did not - have that, having the ability to detail all these . people from different institutes and Public Health Service throughout. In fact, I counted some 16 people that I knew were sort of gratis to the Commission in that their time and contribution and work was donated, really, without appearing as part of that $1.5 million. And I'm thinking the same way Scott asked you if he could just have a feeling--I mean, are we going to have enough money there for six meetings and to be able to sustain an office and a staff, even of a small MILLER REPORTING CO., INC, 307 C Sereet, NE. Washington, DC 20002 (202) 546-6665 332 magnitude? MS. BYRNES: I think the answer to that is yes. We have to do it carefully, but can we have six meetings and a staff and run an office? Yes. What do we need to do creatively? We do need to think about what the arrangements will be in terms of detailing people from agencies and other walks of life, perhaps, if that can be worked out. COMMISSIONER DIAZ: At no cost to the Commission. MS. BYRNES: That would be my intent. If i run into problems with that, I think that is something I would like to approach the Commission about and see if there is some way I could get your assistance in working those arrangements out, because you are right, the Commission did detail people from the Department of Health and Human Services, as well as from other areas. We have a Department of Defense and Veterans Administration, I think there are some Housing people we may want to turn to at some point in time who could be helpful. And we'll negotiate--I'll negotiate as far into those arrangements as I can, and if I run into peony MILLER REPORTING CO, INC. $07 C Street, NE Washington, DC 20002 (202) 546-6665 333 some problems, I would like to come back to the Commission to see if there are some roadblocks that could be overcome. COMMISSIONER DIAZ: But wouldn't that be germane to the preparation of your final budget, if you are going to have a budget for us, approximately by the next time we meet; correct? MS. BYRNES: It depends on when the final number is approved, but I will provide that as soon as I know what the overall dollar figure that we will have for will be. We don’t know what that number is at this point in the time. COMMISSIONER DIAZ: I think an important figure will be how much staff will be able to help at no cost to the Commission. I really urge you to let us know how we can be helpful to you. MS. BYRNES: Thank you, I will. COMMISSIONER AHRENS: I think just a piece of information here, in response to Harlon, my understanding is, looking at the schedule, that the former Commission met 26 times if a period of 10 months. MILLER REPORTING CO., INC. $07 C Suect, NE Washington, D.C 20002 (202) 546-6665 334 COMMISSIONER GOLDMAN: But I think that included hearings that it held as well. We hope certainly to be meeting more than merely--the six times scheduled was not intended to reflect the time that would be necessary for hearings that we would hope to be holding, so that 26 is not an unreasonable number of meetings to talk about. MS. BYRNES: I sincerely don’t believe we need to be discouraged, I just think we need to be constantly aware of it, and I think it needs to be budgeted very carefully. I think we need to look at our plans very carefully with those issues in mind, but - I also think we need to take advantage of as much opportunity and offers of help and seeking those out. I know I have spoken to a couple of people about that and we are wide open to people who wish to volunteer. There were some very talented volunteers with the Presidential Commission. I would hope that many Similar kinds of people would be interested in working with the Commission who are accessible in the Washington area. That is where, in fact, our office is going to be, but for the detailing, I assure you I will MILLER REPORTING CC., INC $07 C Sueer, NE Washington, DC 20002 (202) 546-6665 335 aggressively be seeking people who are talented from other agencies. If I run into problems, I'd appreciate your help. I have absolutely no desire to overlook the obvious for people who are talented and might be willing to come and work with us. In fact, I’ve talked to Jim Allen about it already for some support assistance as well as some other issues at the activities level, but I think it is very important for us to look more at the programmatic level within the NIMH, the NIDA, and HRSA--I mean, I don’t want to limit myself--just about any of the agencies within the Department of Health and Human Services. - COMMISSIONER DIAZ: Would you advise u, in view of what we have heard this afternoon, that then if any of the institutes or CDC or Public Health Service invite any of us as members of the Commission to speak at any forum, that we request the support from that particular institute or agency? MS. BYRNES: I think that would be very appropriate. MR. PERNICK: The lifespan of the Commission MILLER REPORTING CO, INC 507 C Street, NE Washington, DC 20002 (202) 546-6665 336 will be up to two years, but the appropriation will only be for one year. We are likely to get another amount for FY ‘91, right? MS. BYRNES: Absolutely, but the comparison, I think, is with the fact that the Presidential Commission, with a little bit of a different mission but also taking into account what this Commission decided about its plans yesterday, they spent $1.5 million in 10 months, and we have got 12. COMMISSIONER MASON: I don’t want to seem more to belabor this issue of money, and I know that this kind of large forum like this isn’t really probably entirely appropriate to raise this kind of - concern, and I want to thank you, Maureen and Carlton, you guys are really doing a great job. Now, a concern that I have is related to us hearing from PWAs again. I believe that if we are going to try to hear from people on a regular basis, that it is not going to be very likely that all those people are going to be living in Washington and it is not going to be very likely that we are going to be able to go always to the kinds of places where we need MILLER REPORTING CO., INC 507 C Street, NE Washington, DC 20002 (202) $46-6665 337 to hear from PWAs. Now, in the case of Willie yesterday, as I shared with Carlton and Maureen, he had said to me that he would prefer if he could travel with his sister, she is his care giver and they travel together when he does this sort of work. Now, Willie is not the kind of person, as is hardly any PWAs, we don’t really have enough sense about standing up for ourselves, you know, in a lot of cases and really being insistent, but I would hope that in the future if a situation arises where a PWA does need to travel with a care giver, that that not be presented to the person as, well, you can do this only if you are absolutely half dead and you can’t get here any other way. And I don‘t want to be critical or negative. I know that both of you have always been sensitive to our concerns and our needs, but this is a real--traveling is a very difficult issue for us. It is a real hard situation. And if you can have somebody that you are comfortable with who can kind of stand there and tell you when to sit down or make sure that you make it to the airport and kind of thing, I know Ths SRE MILLER REPORTING CO, INC. 507 C Street, NE Washington, DC 20002 (202) 546-6665 338 that within limited money that we have to look at all this and I don’t want to air this in a way of being critical. I just want you all to be aware. I would hope that we could attend to people’s accommodation needs regardless of whether or not we feel like in our own minds that the explanations they give is justified. MS. BYRNES: Belinda, that concern was never budgetary. The issue was getting over the hurdle, in the short time period, of paying for people that we invited to come who were not members of the Commission, who were not other witnesses, and trying to get that taken care of. We spent a lot of time making sure that - we were just covered in terms of covering the expenses of the person who was coming to participate in our meeting who was not a member of the Commission. That was not budgetary. I sincerely will work with you to see--if they are currently saying we can’t do that, then maybe we need to be the first to craft exceptions and look at that as something that we are going to continue to do over the next two years. We tried very hard to at least make it as comfortable on either end, even know though I know it 18 not in the MILLER REPORTING CO,, INC. $07 C Street, NE Washington, DC 20002 (202) 546-6665 339 hotel and on the airplane. It was not budgetary. It wasn’t a matter of whether or not we had the money, it was in terms of whether or not we could be funding a companion’s expenses. And if that is something that we are going to continue to do over the next two years, I think we need to address that and come up with a way that in fact that is comfortable, for you and anyone else that we invite to come. COMMISSIONER MASON: Okay. Thanks. MS. BYRNES: I’m going to stop with two quick announcements. We actually have new phone numbers that they say are legit, and a fax number--If I say that publicly everything starts coming--1730 K Street. IL wasn't sure if Cal said H, and I just wanted to repeat, it is K re N.W., 8th Floor, Washington, D.C. 20006. We are told our target date is October 4th or 5th, so I'll assume the 4th. The phone number will be 202-254-5125, 5126 and 5127. And the fax number is 202-254-3060. COMMISSIONER GOLDMAN: Maureén, will it be possible in some short time to get an updated list of all the members of the Commission, together with their MILLER REPORTING CO., INC. 907 C Street, NE Washington, DC. 20002 (202) 546-6665 340 addresses and telephone numbers, together with their fax numbers, to the extent that they exist?. MS. BYRNES: Absolutely. In fact, that was something I was going to ask you. We included the description, the biographies for each of the commissioners. We made sure to correct some errors. On the way home or some place, if you would take a look at them, I’m not even quite sure where they originally came from. I think they were drafted by the HHS people who were helping us initially. If you are comfortable with it, great, but we are going to begin to use that in terms of handing it out for people who ask questions about the makeup of the Commission. If there is anything in there that you need the update or change or correct, I’1ll double check with you on that as well, but we won’t start using it again until I check and make sure that it is up to date and exactly how people would like their activities and background described. But I'll also take care of that, Don. I’ll get you a list of the commissioners, updated phone numbers and addresses, and I’ll pass it around now. This is a real quick cheat sheet, but I have put MILLER REPORTING CO , INC 507 C Sueer, NE. Washington, D.C 20002 (202) 546-6665 341 the names and a real brief background of each of the staff people who have come on board, so that you can have that to take that. CHAIRMAN OSBORN: Thank you, Maureen. I think that brings us then to the legislative update that Cariton has prepared for us. Carlton, I think I'm turn the floor and the microphone over to you. MR. LEE: I will let Maureen talk, when I am done, about where we are in terms of the appropriations on the Senate and House side. The Senate should bring up the Labor-HHS appropriations bill, my guess--and Maureen may know better than I do--it could be as early - as tomorrow, and maybe Thursday, maybe next week. [+t could be right now for all we know, although I suspect we would have heard. So the only thing I would say in relation to the HHS bill is we do expect efforts from various senators, some of whom we know all too well, amendments that might be offered that would be sort of making immediate public health policy around the AIDS issue. There have been a number of efforts in the past, as you know. I guess the lead senator on this sort of thing = oS ee rea tee MILLER REPORTING CO., INC, 507 C Street, N.E Washington, DC 20002 (202) 546-6665 342 has been Senator Helms of North Carolina. The most noted issue is the education issue, education materials that, quote, promote or encourage homosexuality or homosexual sexual activity. We have dealt with that in the past through efforts by a number of senators to come up with second degree language, which is language that basically members are able to vote on prior to the other amendment, the Helms amendment, in this case, that is basically more attractive politically and allows us to continue with sound education efforts while at the same time our politicians are able to make a statement that these materials should not encourage homosexual or heterosexual sexual activity. So we do could expect there could be some efforts by a number of senators to make quick health policy around AIDS on the appropriation bill and how the monies are spent. So I will pass around during this talk just some examples of amendments that we have fought in the past and some talking points about why these are bad public health policy, and I won’t go into them much more at this point. I think maybe later we MILLER REPORTING CO., INC 507 C Sueet, NE Washington, DC 20002 (202) 546-6663 343 can talk about whether or not the Commission would like to discuss a possible statement around these various amendments or just a general opposition statement to this kind of quick-fix AIDS policy. So I'll let you guys look at those. I‘m move on to the Americans with Disabilities Act, which, as most people know, the Commission several weeks ago issued a statement in support of the Americans with Disabilities Act. That is legislation that was passed by the Senate, on September 13th, I believe, which basically extended federal handicap laws to the private sector in terms of - employment and public accommodations. - The Americans with Disabilities Act, as I said, was passed September 13th by the Senate, 76 to 8. It is very important legislation. It does, as well provide discrimination protections for people with traditional disabilities, it also provides protections for people with contagious diseases, including people with AIDS and HIV. This is something we, through legislative history, building on the Arline decision the Supreme Court had several years ago which said that MILLER REPORTING Co, INC. §07 C Sueet, N E. Washington, DC 20002 (202) 546-6665 344 contagious diseases were covered by Section 504 of the Rehabilitation Act, which provides these sorts of discrimination protections for federally funded programs. So what the ADA did is to extend those sorts of protections to the private sector. Now, one thing I would point out for the Commission's sake is we heard a few comments about the fact that this is wonderful and things are moving in terms of discrimination protection for people with AIDS and HIV. But the fact is, in terms of the bill, the public accommodations requirements and protections do not go into effect for 18 months, and the employment protections do not go into effect for two years. So we still have a gap here where we need to deal a lot discrimination and there is not a lot of protections out there. I think the fact that the President supports this legislation, the fact the Congress is acting, sends a very clear message to the public that this sort of discrimination is not going to be tolerated, at least in the long term. In the short term we would hope that the fact these things happening the oe Nk ¥ T 7 Fem aft oe MILLER REPORTING CO,, INC 507 C Street, NE Washington, DC. 20002 (202) 546-6665 345 discrimination will level off. And I think the Commission, of course, has a role to play in that, and June and others on the Commission I’m sure will make that clear to the public. So the Americans with Disabilities Act, in terms of House movement, Steny Hoyer of Maryland is the lead sponsor on the bill and has indicated he thinks the bill will move through, perhaps in October, certainly by November, and that the President will sign that bill this year. So that is very good news for all of us. This is a bill that was actually introduced early on by- Senator Lowell Weicker who, of course, was one of our greatest friends in the Senate, and in the Congress, for many years. And I think next we‘ll talk about the Low Income Treatment Assistance Program. As many of you know, this is the program that provides assistance to low income individuals to help pay for AZT and other drugs that have been proved for treating life-threatening illnesses. So that has moved quite well lately. We had an authorization for that program ae et Me ry apt MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 (202) 546-6665 346 pass on July 20th, I believe, in the Labor Committee that was a three-year authorization for this program. Basically, we tried to stabilize what we have been doing for the last couple of years. Again, Mr. Weicker initiated it. It is trying to help people with AIDS and HIV access drugs that they need but yet couldn’t afford. So that three-year authorization has been approved by the Labor Committee and it is part of the reconciliation bill that may or may not move in the next couple of months. The good news is the Appropriations Committee in their markup in the Senate just last week approved $30 million for this program for the FY ‘90 fiscal year. So there are monies that I believe will survive the conference and will be available for i990 fiscal year. Also I included, if you look in the briefing books, a copy of the 10-point plan that Senator Kennedy discussed this morning at breakfast in which I think he explained a number of those issues, And I won't go into those in detail. We will be sending out legislative packet over the next several weeks with more oes mea eee Fame “ar WL ae yee “ae ee ale ee ee Tae Tae ate Sat ee ee eee MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 (202) 546-6665 347 information. Given all the logistics of the meeting, there was not a lot of things put together in terms of the legislative program, but we will be doing more and more. There will be a care bill, I believe, introduced next month around the AIDS and HIV infected individuals, and that care bill I think definitely we'll get a to the Commissioners for comments. That will be introduced next month. It is a health care bill that was put together. I believe Senator Kennedy is going to introduce it in the Senate, and I’m not sure if there is a House counterpart bill at this point. But it is AIDS specific, and I just got a draft - of it and I will certainly get that in the mail to ail of you. On appropriations, Maureen had prepared a chart which is in your briefing book, the first page after the legislative update, and that has quite a few of the numbers and she can talk about the specifics. MS. BYRNES: Jim Allen essentially walked the Commission through most of these numbers. I don’t think I need to go over them again. I do need to fill in the FDA numbers for you. It shows you where I'm at MILLER REPORTING CO , INC 507 C Sereer, NE Washington, DC 20002 (202) 546-6665 348 these days, Labor-HHS Subcommittee doesn’t do FDA, the Agriculture Subcommittee does. I think that the appropriation was 57 or 59 million for the FDA for 1990, but I will get you that exact figure so that it is in your books, but you'll notice that that is a blank. Another caveat, too, and I specifically wanted to mention this to David and Irwin. We were pressed for time, but one of the things I will make it my business, as well as Carlton, is to provide you an overview of appropriations and legislative issues that might well be falling within the parameters of DOD and the VA. Those are two places that they clearly are - looking at issues and funding research and some other related issues. They are not on that table, they will be in the future. I think it is important to include both of those. I'll be sure that they are there. And the last thing I would say about appropriations is you know what the timing is, we have talked about that enough. The bill has been reported out of the Senate Committee, pending Floor action at any time. We are on the VA-HUD bill, as a matter of MILLER REPORTING CO., INC. 507 C Srreet, N E. Washington, DC 20002 (202) 546-6665 349 fact, today and could turn to Labor-HHS at any time. I think the issues legislatively or policywise, Carlton and Dr. Rogers and Dr. Osborn can speak to a little bit more in terms of what the role of Commission may be there. I would point out two big funding issues that I think will be important discussions in the conference that I referred to earlier about how much money the Commission will receive. Those will be issues I think very clearly for the conferees for Public Health Service funding for AIDS related programs. For the first time since we have been identifying particular figures for AIDS related - programs, the House of Representatives passed a bill that did not specifically state how much within the NIH account and within the Alcohol, Drug Abuse, and Mental Health Administration account is dedicated to AIDS related research and programs. That’s different from the reported bill in the Senate where there is an overall figure appropriate for the NIH, as well as for ADAMHA, but there is a stated assumption on the part of the Senate as to how much of that overall figure should MILLER REPORTING CO., INC $07 C Street, N.E Washington, DC 20002 (202) 546-6665 350 go towards AIDS related research. I think that that will be an issue in conference as to whether or not in fact the Congress--meaning the House and the Senate--want to continue identifying specific figures in the areas, particularly of research. It doesn’t seem to be quite as crucial this year with education or treatment related issues, but in the area of research we are beginning to see a dialogue on the Hill about should we be targeting figures for AIDS or should we be using the same process for all other diseases and health concerns that they have in the biomedical research area. The other issue will be the two additional. programs that were funded in the Senate bill that were not funded in the House passed bill, and that is the $30 million for the reimbursement program for AIDS and HIV drugs, as well as the $50 million for the home health care for persons with AIDS. Neither of those programs were appropriated for in the House passed bill. They are included in the Senate bill and clearly will be issues for the conferees to resolve once they get together. But the MILLER REPORTING CO., INC, 507 C Sueet, NE Washington, DC 20002 (202) 546-6665 351 process is moving, and I'll leave it at that, because it may be that the Commission will want to participate in that process in some fashion. MR. LEE: In terms of possible amendments that would be unfortunate if approved by the Senate or the House during the appropriations debate, I would like to read just a draft statement, if the Commission would like to consider as a possible statement of opposition to such measures. I put together a brief--it is not brief, actually it is a little long, but we can certainly talk about editing it if people want to pursue this. I know a number of Commissioners this morning indicated concern about the amendments -and interest in maybe having something said on paper. So I will read this just as quick as I can. "We, the members of the National Commission on Acquired Immune Deficiency Syndrome, strongly Support the increased in AIDS funding endorsed by both Houses of Congress and the administration. While we believe that much work remains to secure adequate funding for the national battle against AIDS, we are also aware of the fiscal challenges which policymakers MILLER REPORTING CO., INC, 507 C Street, NE Washington, DC 20002 (202) 546-6663 352 now face. We are particularly pleased that the Senate Committee on Appropriations has increased the total AIDS budget to accommodate humane and cost-effective programs designed to Meet the burgeoning care needs resulting from the HIV epidemic. Being able to provide access to lifesaving medical treatment to those who face poverty and death is not only a compassionate response to crisis, but a sound public health strategy for bringing the epidemic under control. The most compelling incentive for individuals to step forward for HIV counseling and testing is the availability of effective treatment and appropriate medical care. - The Commission is extremely invigorated by its task of advising both the Administration and the Congress. It is a responsibility that we take very seriously. We applaud the Committee on Appropriations for funding both the President’ request and essential aspects of the AIDS legislation that the Congress unanimously endorsed last fall. With this in mind, we ask that you resist attempts to embark On AIDS policy initiatives offered as amendments to the FY ‘90 ee ee eee im pes" ween 7 oe nme eh an a MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC. 20002 (202) 546-6665 353 Appropriations bill. States and cities have implemented a wide array of programs tailored to meet the unique public health needs of their communities. The Congress should proceed cautiously before acting to override public health programs that have been designed at the local level to address the AIDS emergency. A federal mandate to implement HIV policies that make sense for one area might literally spell disaster for another region. This Commission believes that one of the fundamentals of our public health effort to arrest the spread of HIV disease must be in the active cooperation - of individuals who are infected with the AIDS virus.- Only through behavior change can we ultimately control this epidemic. In our judgment, the hasty imposition of coercive or punitive measures directed at individuals infected with this virus are more likely to undermine than to advance the nation’s public health. If requested, the National Commission on AIDS stands ready to review and comment on proposals developed by the Congress for addressing the AIDS health care emergency." er -— ee nm, 5 MILLER REPORTING CO, INC 507 C Sueet, NE Washington, DC. 20002 (202) 546-6665 354 I have copies of that if people want them. COMMISSIONER SCOTT ALLEN: Just one comment. You may want to change "the AIDS virus" to "HIV." COMMISSIONER ROGERS: Carlton, if you want responses, I thin it is an excellent statement. I don’t think we should try and edit as a group, but the one sentence where you in essence say, please don’t accept a lot of crippling amendments might be made a little clearer than it is. It is the underlined line here, which I had to read three times. I think that could be made clearer. MR. PERNICK: Absolutely, and probably set off in a separate paragraph. COMMISSIONER MASON: Irwin, what did you just say. MR. PERNICK: I agreed with Dave Rogers that the underlined sentence really should be a little clearer, and I think it should be set off so that it sticks out as a separate paragraph. MR. LEE: Something about "undermine sound public health policy"? COMMISSIONER ROGERS: Or “resist attempts to MILLER REPORTING CO., INC 507 C Sureet, NE. Washington, DC 20002 (202) 546-6665 355 introduce amendments which would cripple the"-- MR. LEE: Okay. So tie it in. Any other comments? COMMISSIONER GOLDMAN: Any only concern is really the next to last paragraph, and not that there's anything in there that I disagree with. But it seems to me that at this point in time there is a whole bunch of policy statements that are contained in there, and I don’t know the extent to which the exact language tracks or doesn’t track the language of the former Commission, to the extent to which it embarks upon any new land in any way in terms of scope or direction. I just don’t want to go too far to quick too soon and perhaps take any risks that one would question this Commission’s rush to judgment or speed in any of these issues. JI don’t disagree with that. The last point, of course, I think should be up higher in importance, namely that we stand ready to review and comment on such proposals as a reason for why these things should not be in the bill now, because that's what this Commission in fact was established for, we will be holding hearings to deal with some of these MILLER REPORTING CO, INC. 507 C Street, NE Washington, DC 20002 (202) 546-6665 356 issues. But that’s my only concern. It is a general, unstated one, and I’m just a little queasy about it, that’s all. COMMISSIONER DES JARLAIS: I’d like to follow up on that a little bit. The paragraph with the underlined sentence says that we are basically opposing all amendments because we think the policy should be made at the local level, and then in the next paragraph it gets down to, well, no, really we are only opposing a certain type of punitive, restrictive amendments, even know we don’t really know what the amendments are. It is conceivable somebody could propose an amendment that would say, "Civil rights protections for HIV people should be made effective now rather than in 18 months,” or something like that. It is possible to imagine an amendment that would be consistent with the next to the last paragraph, yet in the middle paragraph we are just staying basically don't do any amendments right now because it is a poor way to do policy by amendments to appropriations bills. So I think we are sort in a logical-- MILLER REPORTING CO., INC 507 C Street, NE Washington, OC. 20002 (202) 546-6665 MR. LEE: Well, the key argument that has been used in the past--or misused--on every appropriations bill is you shouldn't be legislating on appropriations bill. It is a judgment that I don’t think at this point it is likely that there would be what we would consider good amendments offered. COMMISSIONER DES JARLAIS: Yes, I think that is unlikely. MR. LEE: But I think the key here would be just trying to indicate opposition to quick-fix solutions to the AIDS issue, and if we want to be more clear about that and back off from being more broad about it, that’s fine. MR. NEWHALL: Dr. Osborn, may I offer a possible way around this, stealing from the Watkins Commission. Several times they praised various people--and DOD among them--for basing policy decisions on solid scientific and medical data. I was thinking that to avoid the problem that Don Goldman talked about we might go to a very much compressed statement, saying that the Commission strongly urges that the Congress not adopt policies which have not had the careful MILLER REPORTING Co., INC. $07 C Suect, NE Washington, DC 20002 (202) 546-6665 358 consideration of the Appropriations Committee in hearing process and, above all, the Commission urges that the Congress in making policy decisions always base them on solid scientific and medical data, period. CHAIRMAN OSBORN: That sounds like such a sensible suggestion that I hate to speak in a bit of opposition to it, but I think that the fact of the Matter is we are dealing with a very specific phenomenon. I mean, what you just said is such good common sense it almost seems like it shouldn’t have to be said, and if he just said that it probably would be read that way. I think we have to be fairly specific about the dynamic of using appropriations bills to have highly policy-charged amendments, because that is the specific phenomenon that we are concerned about. We are not worrying about a thoughtful senator coming up with something that is well-developed and does or doesn’t have a sound scientific basis. That isn’t the dynamic here, and while we don’t want to get so Congress-savvy that we get ourselves tied in knows, as one who has spent many happy hours in the Senate MILLER REPORTING CO., INC. $07 C Sureet, NE Washington, DC 20002 (202) 546-6663 359 anteroom waiting for these amendments to show for no good reason in no good context, out of the blue but having the potential for devastation of public health efforts in this epidemic, I would urge us to keep in mind enough precision of what we are trying to do that we don’t fly over the heads of people who don’t recognize that we know that dynamic. I mean, we have got a kind of a funny role to play here, because we are not, technically, people who know well how the Congress acts and so on, and so this language in a certain sense reads like insider language and it sounds a little funny. But we are talking about - very much of an insider phenomenon in terms of taking a process that was not intended as a policy making process and suddenly, and usually in a lightning-strike mode, threatening to wreak havoc with all the public health policy that has been developed on the basis of sound scientific principles. I mean, really, a lot of the stuff that we are worried about here, a lot of the substance of that set of amendments that Carlton has passed around for everybody to see has already been discussed, sound sale Le tee Ole -_— at oe MILLER REPORTING CO., INC. 507 C Sureet, NE Washington, DC. 20002 (202) 546-6665 360 scientific judgments have been drawn, and those amendments oppose the best judgment of every scientific body and public health body that has looked at them. So to urge that that--it is almost like urging that motherhood and apple pie are good. The people that would like to help you won’t understand what in the world you took the time to say that for Since it has already been done, and the people you are trying to interact with are using whole different set of rather inappropriate ground rules. COMMISSIONER ROGERS: June, let me try a suggestion that I think would be responsive to both Don's concerns and might deal with it. . If we could clarify, make very clear in that third paragraph that one sentence we have already discussed, in terms of Don’s concern--both Don’s concerns. In reading it, really the next to last paragraph could be dropped. Then we don’t have that dichotomy of purposes. We in essence say, be careful, don’t try and make policy through amendments to an appropriations bill, period. That last paragraph really takes up yet MILLER REPORTING CO, INC, $07 C Street, NE Washington, DC 20002 (202) 546-6665 361 another area and, as Don says, sort are telegraphs--it is really a whole new topic. It seems to me the main issue could be solved without that paragraph, you could shorten it, and just punch home that one in the way that Irwin suggested. COMMISSIONER DALTON: I missed part of this, but I didn’t catch one Don from the other Don. I think there are really they different messages here and we need to decide among them. One is the question of whether one makes policies through appropriations. I think that is a message that doesn’t come through, not simply because it is only one of three messages, but also because of the way in which the particularly sentence that has that message is structured, and I gather you talked about that. The second message has to do with the question of whether policy should be made at the federal level or the state or local level. That is an infinitely more complex issue than is suggested here, but it sounds at some point as if that is our concern. And then the third has to deal with specific moe ble Lee wt MILLER REPORTING CO., INC. 507 C Sureet, NE Washington, DC 20002 (202) 546-6665 362 kinds of have policies that are coercive or punitive, which really is the specific kind of message, specific problem we are talking about. So I think the problem is where you are trying to do all three of those things, and maybe our message should be, don’t try to do policy in an appropriations bill, or maybe our position should be, don’t add coercive and punitive kinds of amendments. but I think we ought to choose between those two and leave for some other time the issue of whether AIDS policies should be primarily set at the local level. COMMISSIONER GOLDMAN: So what you are - suggesting in effect is to, in addition to omitting that paragraph, really is also omitting the last sentence of the prior paragraph. COMMISSIONER DALTON: Last couple of sentences. COMMISSIONER GOLDMAN: Well, I think the statement that Congress should proceed cautiously-- COMMISSIONER DALTON: Well, two of the sentences in the prior paragraph. MILLER REPORTING CO.., INC. 507 C Sueet, NE Washington, DC 20002 oh a ee COMMISSIONER GOLDMAN: Okay. Should we go further than merely ask whether or not the Commission should stand ready to review and comment on proposals developed by Congress and merely say "if requested," or should we go further and say that now they have created us, we really ought to do that and we wish to do that, not merely if requested, and do it on a more positive basis, which I think strengthens the opposition to doing it this way. COMMISSIONER DALTON: But I do think it is important that it not appear that our concern is that they didn’t come to us and therefore it- is bad, but just make it clear that in the future we would like ‘to play this role. COMMISSIONER AHRENS: Do I understand that we are going to strike everything after the underlining except for the final paragraph? Is that what we are saying? ; MR. LEE: Yes. We are going to rewrite that one paragraph, the middle paragraph with the underline, to make the point like pavid said. remove the next the last paragraph, take out “if requested" and those last MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 bee ae ea ee - . eee wae He 8 ~- we eh ee 364 three sentences of the third paragraph. COMMISSIONER ROGERS: Well, we have succeeded in editing this. COMMISSIONER MASON: This probably goes along with what Don Goldman said about us being ready to review and comment and how that might--what about--this is really an editing thing, this is like the editor in me coming out--but about tearing that up and making that like the second paragraph, that little, you know, the thing that is the last? And I know this is nit-picking. I just hate it when people do it to me. MR. LEE: Moving the last-- COMMISSIONER MASON: Make the last paragraph like the second paragraph, because it can fit good there, and the transition--or if you think that it would detract from-- CHAIRMAN OSBORN: The only concern I have about that is I share the worry that we may sound like we don’t want anybody to move without us. And when it comes at the end like that it is a reasonably graceful offer to help. If it comes at the beginning and then you come next to the paragraph that says, don’t make MILLER REPORTING CO, INC. 507 C Street, NE Washington, DC. 20002 f9A9) SAL CECA we eee me we ee ee - --_- ee ee . wee a a ee eke 365 policy with appropriations, it almost reads as, don’;t make policy without us. So that if we get it changed a little bit at the end so that "if requested" is replaced with something a bit more forthcoming and eager on our part, any sense would be that that might still best be there, you know, here we are and we are ready to help, and it doesn’t sound to me quite so much as if we were complaining that they were thinking of doing something without us. COMMISSIONER ROGERS: Madam Chairman, I would suggest that we--unless there are other thoughts-- that ~ we have got a good staff, I think they have heard our concerns. My suggesting would be let them make the final edits in the quiet of a room other than this and give us a good statement. COMMISSIONER SCOTT ALLEN: [I just have one comment on the second paragraph where it talks about being able to provide access to lifesaving medical treatment. We are also talking about education and other features, so it is more than just medical treatment, and I think we do need to stress the need Ly rr a - er MILLER REPORTING CO., INC. 507 C Street, NE Washington, D.C. 20002 fan CAs eee et Sai ee epee Re EL Se a ae ee ee ee a te a a tee eee 366 for education, and appropriate education. MR. LEE: So “appropriate education”? COMMISSIONER SCOTT ALLEN: Whatever, but more than just medical treatment. COMMISSIONER DALTON: I take it that this will be approved by the Chair and the Vice Chair, and I am certainly comfortable with that. CHAIRMAN OSBORN: Yes. COMMISSIONER ROGERS: You're out of your mind. (Laughter. } CHAIRMAN OSBORN: Is that a blanket endorsement, Harlon. Do we need a motion to adopt, or is that a consensus that we can proceed? COMMISSIONER GOLDMAN: Well, I think there ought to be a motion, just so we have it for the record, and then move it and then, if there is no objection, let it be deemed to be approved unanimously. And I will say so moved. COMMISSIONER DALTON: Second. CHAIRMAN OSBORN: Any objection? It is Ce MILLER REPORTING CO, INC. 507 C Street, NE Washington, DC 20002 6664 367 approved unanimously. The follow-up from yesterday is one of the things, and one of the points that I want to make sure we got to before people had to leave that was clearly in many people’s minds yesterday was the desirability of coming up with a statement reinforcing the Presidential Commission’s strong stance that drug treatment on demand was an essential component of a rational response to the epidemic, and some statement to the effect that we are concerned that that has not been given the proper attention in the recently announced drug strategy. We got a little part of the way through ° drafting that this morning, but goodness knows what happened then. I know what happened then, I didn’t finish drafting it. But I wondered if you wanted to persevere with that and whether anybody had in fact drafted a statement. I don’t think it needs to be very complicated. Discussion on that point? Yesterday everybody seemed to be quite enthused about it. COMMISSIONER GOLDMAN: My only question about MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 L907) As 2eLS ce ee ee me a eee Ge ae > A abe Mee te a wee ee & 2 . - eee ~ ee wee - . ' 368 the statement is not any disagreement with it, but wanting to know what we are going to do with it, where it is going to be presented, how we are going to follow-up on it, some questions of that nature from a very, very pragmatic and practical point of view. I don’t think we should be viewed as being knee-jerking every time a neat issue comes up at the time we are meeting, specifically pass a resolution setting forth a desirable long-term goal that probably everybody--most people may well agree upon, there is little disagreement upon, unless somebody thinks that is a useful thing to do. And if that is a useful thing to do, that’s terrific, let’s do it. - CHAIRMAN OSBORN: Well, I think the thing that is not very conspicuous to the general public is that--two things. One is that that was one of the highest priority recommendations of the Presidential Commission and, indeed, our stated purpose for this meeting was to review and get a first assessment of how things stood. If you wanted to the pick out the really glaring thing that was missed--you know, the Americans é : ora Way ae MILLER REPORTING CO., INC. 507 C Sueet, NE Washington, DC 20002 « 7 = wa ee ee a ee 4 ok os a ~ eee Lote me - . . = ete ee 369 with Disabilities Act has in fact moved along with discrimination concern--this was the other one. And not only was it missed, but it was missed very recently in a systematic statement, so that I don’t think it is knee jerking every time a hot issue comes along. I would say it was the premier issue that the Presidential Commission identified. We heard strong testimony yesterday about how serious the omission is and could be for the epidemic, and how we make our stance well heard is going to be a steady problem that we'll want to talk about, but it certainly isn’t, in my view, reason not to say things when there is something as conspicuous as that in impediment to forward ° progress with our mission. COMMISSIONER KESSLER: In our mission I think education is certainly primary and we need to face the fact that there probably will not be another drug strategy in this Administration. MR. PERNICK: There will be an opportunity though. You see, Bennett is responsible for an aspect of the strategy to be reported out in January or February, specifically--at least, among other things, MILLER REPORTING CO , INC. 507 C Street, NE Washington, DC 20002 4 370 to examine the high intensity areas question, which is supposed to designate certain cities, perhaps, to get a great deal of resources. So it seems to me that perhaps this Commission would want to communicate with Bennett's office beforehand with a statement directly and say, listen, guys, you forgot something. COMMISSIONER KESSLER: In a way I think that statement now gives you that vehicle to solicit an invitation. It also piggy-backs on the national attention that is paid to this strategy that was unveiled now. The problem in January is that there may be little attention paid to phase two because of something else that happens in the world or simply - because of the short attention span of the media, who might be off looking at the ozone again by then, or hopefully AIDS. But you can’t count on that. So it seems it is timely to say, hey, there is a glaring omission, either by intent or by mistake, that needs to be highlighted. We can’t do a drug war and also have an AIDS policy where we don’t talk about the intersections. Don wasn’t around yesterday for the discussion, and I would like to get maybe some feelings ae see te . - - a - Low - - Roe fee ee ee ne dee cael 371 or input from him because he is the expert on this. COMMISSIONER DES JARLAIS: There two yy comments. JI was in Europe yesterday and I would have to say that the Europeans were astounded that the President could give his first major public address on drugs and not specifically mention AIDS, given that in this country drug use is the second most common risk behavior associated with AIDS. The connection just seemed to have been forgotten in the public presentation of the i Bush-Bennett strategy, and I think we do have an obligation to the Watkins Commission to focus specifically on their very strong recommendation for treatment on demand and that that had gotten left out of the formal presentation of the new federal strategy. And I think that there really is closer consensus probably within the Commission on the need for treatment on demand, and it clearly was a strong recommendation of the Watkins Commission. So that we are in a very good position to call public attention to Ofer that particular Watkins recommendation, which is somewhat being forgotten in the new drug formulation. MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 3 ary 2 te a ey ae ee Se ae ee a ee me ee eee ek E MILLER REPORTING CO., INC. 507 C Sereet, NE Washington, DC 20002 1902) 544, 646% See ee ee al ~ 372 There is another issue that we will have to address, and we are probably not ready yet in terms of working it through ourselves and perhaps need to work with Bennett’s staff on it, but the only way in which the Bush-Bennett document deals with AIDS and drug use related AIDS is to get rid of drug use, which is a long 10, 20 year program. We don’t really have that much time, in terms of controlling the spread of HIV, to use eliminating drug use as our only way of addressing drug use related HIV transmission. I mean, at a bare minimum we need to be getting drug users to change their sexual behavior so that they are not spreading HIV and syphilis and- related sexually transmitted diseases. We can’t fight the sexual transmission of HIV by first getting everybody to quit using drugs. So that just like we can’t fight drug related street crime--robberies and muggings--by first trying to get everybody to quit using drugs. There needs to be additional specific action to related problems, public and I don’t think we have worked health and criminal, through enough of that issue ourselves to know what we eee ae Mee —_—e ee = ae TS ee > = MILLER REPORTING CC., INC. §07 C Srreec, NE. Washington, DC 20002 £ a) 373 want to recommend, but I think we'll have to work on that. But the treatment on demand, I think we have a specific Watkins Commission recommendation that was missed in a major public address that we should call attention to. CHAIRMAN OSBORN: Eunice? COMMISSIONER DIAZ: I’m going to have to leave very shortly and I would just like to press my support for the drafting of a statement by the Chair and Co-Chair that could possibly be read to us. It is such an important statement I think this one deserves that at least a number of us have an opportunity to- react by phone. And I would further like to see that statement framed almost in the same sense that this statement, the one read by Carlton, where we now feel it is the possibility of the National Commission on AIDS to comment on proposals that deal directly with how the drug plan, that Bush-Bennett plan, impacts on drugs and AIDS. It is our responsibility, and that almost, in that case, should be the opening paragraph of the 507 C Sereet, NE Washington, DC 20002 (207) $46.6665 MILLER REPORTING CO., INC, statement, that we consider our responsibility and that we stand ready to deliver on this one and to work with that office or the creators of that particular plan to make sure that it does appropriately reflect the consensus of the Watkins Commission. That’s our job, so we are just reflecting a statement at this time saying we are reacting to that plan in view of our job, what we figure we are here to do, and if view of that, we stand ready to work with whomever to see that that does carry forth the spirit. COMMISSIONER AHRENS: I'm going to have to leave and I want just to say that I do support this. I am very concerned as to how it is worded, however, - because I think our credibility is on the line and we need to clearly link treatment with AIDS, number one, because the public needs to make that linkage, if they haven’t already. But I also think to lay this out as a national goal, and an essential national goal if we are going to deal with AIDS, and perhaps to talk a little bit about if we wish to, a phase-in or something of this nature, because it just seems to me that to talk about anything that is immediate that we are going to ee eed ee ee eS ee MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 (202) 546-6665 375 have treatment on demand is just not to be realistic, and I have a concern in that sense about our credibility. So I guess I’m concerned about how the resolution or whatever is worded in that sense. But I think we clearly need to make it and we clearly need to state for the public as well as the policy makers linkage. COMMISSIONER DALTON: I agree with everything that Diane just said except the part about--and the fact you didn’t express an opinion about whether we should speak to the phase-in. But I worry that we shouldn’t talk about the mechanics of how to do it, - because there are any number of other mechanics. If Jim Allen were here he could give us, as he did yesterday, a quite wonderful laundry list of the practical problems that one might face, and I don’t think that we need to anticipate and work through--canvas and then work through all of those in order the make the basic policy statement. But you are absolutely right that we need to link HIV and treatment in the public’s eye, and I think te Sah Dette ete ee ee ee ee eee te ein tee ae Rt Re oe 4 a2 is by MILLER REPORTING Co., INC. 507 C Street, NE Washington, D.C. 20002 a) 64k Oe e 376 Eunice is absolutely right that this is our job, and I guess I share both of your view that this is something that we might want to hear, or see by phone, as it were. COMMISSIONER KESSLER: I think it is interesting that there is no phase-in in terms of new prisons and prison beds. It's, you know, as fast as we can build them. I mean, it is not 10 years from now. They want those immediately, and we should be asking the same for treatment slots. COMMISSIONER DES JARLAIS: The Watkins group laid out what budget would be needed and really a 10 year plan for getting the treatment on demand, and the Bush-Bennett plan starts about a third of that. You know, if with at the dollars appropriated and such, they make about a third of the steps. So I don’t think we have get to get into an antagonistic, bitter fight, because they have clearly made a movement in that direction. But they have gone, in terms of dollars, roughly a third of the way from what the Watkins Commission said would be needed to get started ina 10 year plan to get to treatment on demand. + erties a Ree MILLER REPORTING CO., INC, 507 C Street, NE Washington, OC 20002 5 FT eee at Paekee So) ee ee _ ee m= oe SH te ae - > so mee 377 COMMISSIONER GOLDMAN: I just have a concern. This Commission is going to exist for two years. I think the Administration’s drug program is a program we are going to have to work with for the next two years. I’m not sure how fair it is to start off making an implied criticism of the drug plan without even giving Dr. Bennett or those the opportunity to explain to us how the program is operating and what it is doing and why they didn’t do what was done by the Watkins Commission. And I just am concerned that I don’t think we ought to start off getting into an adversarial mode. I don’t think there is any disagreement on the long term goal of treatment on demand, but I think it ought to be done very carefully. There are people that we are going to have to work with that we ought to be careful about not inadvertently--I think it is our intent to work with all of these groups, to work certainly with Dr. Bennett to deal with all of these problems, and not to antagonize anybody, but I’m just concerned that what we are doing might be interpreted that way inadvertently. COMMISSIONER ROGERS: I think that is a Pr er Cee eer Cr eS ee aie eced wees ft Ve MILLER REPORTING CO., INC $07 C Street, NE Washington, DC 20002 (202) 546.6664 a ee ee Tia ee Ree ” 7G = Ge BT en ee — A oe 378 thoughtful statement and I would agree. I think the summer sun works better than the north wind most of the time in terms of persuading people. My feeling is we could write a dignified, thoughtful statement which in essence congratulated the Administration on moving in with a drug strategy, pointing out that in terms of the charge to this particular group, it omits an enormously important linkage that was explored in great detail in the Watkins Commission report, that we do feel that swift progress toward treatment on request, treatment on demand--I think it could be--I’m sorry that Diane had to leave--I think it could be phrased in~ ways that showed we know what we are talking about, -we do wish to work with you, but that we are serious about our concerns here, that people are, in essence, dying every day on this and here, as Don said, it just appalled people in Europe that there was no linkage here. And I think it is an obligation of this Commission to say, congratulations on starting it, but here is something that we can proceed with. And I think would be happy to share that over the phone. I rary on . whe MILLER REPORTING CO., INC. 507 C Sueet, NE Washington, DC 20002 (202) 546-6665 379 think we can write a statement that will be supportive of but would very clearly state that this is serious business. CHAIRMAN OSBORN: Belinda? COMMISSIONER MASON: Just to follow up what Dave said, I think it would be really incongruent that we would not say that we noticed, you know, and I think that maybe what all of us who are trying to talk about this are trying to agree on is to say that we noticed-- you did some things good, but here is what we noticed, so come on and get in the boat with us on it, or something, not club the people over the head with it. But for us to not say that we noticed it-- COMMISSIONER ROGERS: Should we put that in our statement, "Get in the boat with us." [Laughter. ] COMMISSIONER MASON: To not notice would be irresponsible. COMMISSIONER KESSLER: I guess I would go with kind of compromise posture here, and that is to say we noticed, that we are deeply concerned, that we would hope that this Commission’s concern would be — —a arse, MILLER REPORTING CO., INC. 507 C Sueet, NE Washington, DC 20002 -6665 pp a = Pay = sow le ~ - - - - . a* a 380 heard. And it is going to be heard also by Congress, which is deliberating the funding for the progran, whereas if we wait until November, then we miss that opportunity to speak to the Senators and Congress people who are going to be debating the whole drug strategy budget. And at the same time, invite Bennett to come to the November hearing and to explain where he wants to go now that he knows we have noticed. And by that time he’ll have a chance to read the Watkins report, which I don’t believe he has read, or he wouldn’t have come up with that kind of a strategy without implementing, or at least mentioning it. COMMISSIONER DES JARLAIS: Just a point of fact, it was mentioned in the book, it was just in Bush's talk that AIDS was completely left out, but there are two or three sentences about AIDS in the book. COMMISSIONER KESSLER: But not in terms of the recommendation about treatment on demand, and that’s the point that we are talking about. COMMISSIONER DALTON: I must say, when David Rogers was just sort of outlining the kind of statement “y MILLER REPORTING CO,, INC 507 C Street, NE Washington, DC 20002 (202) 546-6665 381 that could be made--you convinced me that it could be made, in fact I would just get the court reporters recording of what you just said, I thought that was wonderfully well done. With respect to Don Goldman’s point, I do think that, yes, having started this dialogue, particularly in this way, it advances whatever perhaps desire we had to speak to Dr. Bennett, and I’m not sure that it necessarily should be him coming to us at our next meeting. We should talk to him about the way in which we can get into the boat together. COMMISSIONER ROGERS: I think we should send Belinda over to see him, don’t you? COMMISSIONER DALTON: Definitely, paddle on over there. So we really should do that, and hopefully at the next meeting we’ll hear what the suggestions going both directions are for us, cross fertilization. MR. PERNICK: I would just, and without expressing a view on the specific language, that the Bennett group was constrained by the fact that it was essential the federal government. They did consult MILLER REPORTING CO., INC. 507 C Srreet, NE Washington, DC 20002 £202) SAG 666% 382 outside a great deal, but this was a federal government operation amongst the various agencies, and certainly at the time of the actual drafting of the report and coming to the decisions, they had OMB present and making its very relevant view as to what the Administration was prepared to do in the context of the total budget, perhaps requesting not only ‘90, but ‘91, and maybe suggested the out years. And that is quite a different kind of approach than Watkins and that we have. COMMISSIONER KESSLER: But one of our roles over the next three years--this happens at the state and city levels too. Ever group that gets together - these days, either on housing issues, or homelessness, or drugs or whatever, all tend to forget that we also have an AIDS epidemic going on, and that’s our role, is to say, excuse us, how does AIDS fit into your program. COMMISSIONER DES JARLAIS: I think the relevant point is that when Bennett did the budget for this is our anti-drug effort, they want back and they said, well we already have asked for a certain amount of money for building prisons, as we'll figure X re é MILLER REPORTING CO., INC. §07 C Street, NE Washington, D.C. 20002 (202) 546-6665 eR — 383 percentage of people going into prisons are drug users, so we will count that money as part of our proposed budget. They could have gone back and looked at a number of PHS budgets and said, well there is some money in here relevant to reduction of drug abuse, in the CDC AIDS prevention programs, for example. We'll also count that as part of our drug budget. I think if AIDS had been in their mind they would have done that. They would have gone back and said, we are appropriating all this money for anti-AIDS related to drug use and we can count that as part of our overall anti-drug budget, you know, if AIDS had been in their mind, but I think it really basically ~- just wasn’t. CHAIRMAN OSBORN: I have a suggestion, if they are willing, that maybe Don and David could pool their thoughts and language and expertise and put together a statement for us that incorporates the sense of this conversation with good attention. I think, Don, just to make a little comment. I think your points are not only well taken but you should assume that in general we will not be adversarial as we try to te ae Cet Loeb e rte ae MILLER REPORTING CO., INC. $07 C Street, NE. Washington, DC 20002 4 eee ee nstln mee Seee an Fe a 2 ae iene el ad = ee oe Te ee ae —e Fe en ERE ee ie ee ee et ee ee ee ee 384 approach these things. If we managed to get the last statement as pleasantly worded as it was directed at who it was, we are surely going to be much more accommodating, even so, to others. So I wouldn't be too concerned about that. I think we have got to take muscular stances in order to be effective and I think that now is a better time than later when we do have a burgeoning epidemic to be concerned about. But I think that Dave’s touch, we are all getting to be more familiar with, and that, combined with Don’s very detailed knowledge of the plan as it stands would be very helpful. Then we will try and arrange to check it out with the group subsequent to its drafting. I think there is some sense of urgency, I don't think it is so desperate that we have to do something quicker than that, but if that suits you-- COMMISSIONER ROGERS: Madam Chairman, we will have it back to you very swiftly. COMMISSIONER GOLDMAN: If one had the opportunity to watch C-Span, an interplay between Senator Biden and Dr. Bennett, one can sense that--or I’ll agree with you, there were some very, very deep ny a MILLER REPORTING CO., INC, 507 C Sureet, NE Washington, DC 20002 (202) 546-6665 385 sensitivities on these issues that even the most seeming innocuous statements that could be ambiguously interpreted as either being complimentary or otherwise often seemed to get misinterpreted, given the sensitivities of some of the people involved in a verg hotly contested political area. CHAIRMAN OSBORN: Well, even in that context I think we are blessed with some real expertise, even in that closer context. So I think we can feel comfortable proceeding. Now, I think that the other piece of remaining business was to get back to yesterday's discussion about how to proceed. And ina we have - already proceeded in that we have today tried to make the Commission's stance visible on a couple of the items that have come up, and part of yesterday’s discussion, if I can summarize so briefly, was that we wanted to make sure that we didn’t have just a two-year final output product and that in between times we were going to be working quietly away. It doesn‘t seem to me like that in itself is a particularly worrisome problem, because we keep being ete es ee ~ oat dee oe ee ee MILLER REPORTING CO, INC 507 C Street, NE Washington, DC 20002 (207) S46. 666% 386 pressed into saying things so much that some are worried that we are going too much of it. On the other hand, another in-between suggestion was made--two, really--one was that there be working group substructures so that there could be some focused attention on specific issues in a quicker way than we otherwise could do as a Commission. And the other is that there were a rather general set of things, perhaps harshly embodied in this paragraph that we struck from the statement about the appropriations bill, where we probably could in a relatively short period of time conduct a public discussion and help to lay to rest I think the concept of mandatory this and that in a way that did develop a stance for this Commission analogous to the predecessor Commission, so that we could then start to refer back to our own body of work. So I see that as an opportunity to be a piece of one or two meetings coming up where we could have as a part of the agenda discussion of issues that are broad but where the broad discussion of them contributes in itself to the public education and ee - + eS ee 7 - 2 a ' . ee a eee ‘ ‘eb MILLER REPORTING CO, INC 507 C Street, NE Washington, DC 20002 202) 346-6665 387 understanding, what is the role of testing versus counseling, plus counseling, what kind of counseling, is there such a thing as mandatory contact tracing, if not, what in the world are we all arguing about. That kind of thing as a general forum discussion for the Commission to work away at and to both keep the issues visible and keep it evident that in fact there is quite a good consensus among this kind of a Commission, as well as our predecessor Commission, about the relative utility of some of those approaches. That would be my summary of yesterday's discussion, and I think it got left hanging about there - without any concrete way of proceeding. I would invite the commissioners to help guide the staff about how to put together the next agenda. COMMISSIONER ROGERS: Could I comment briefly there, June, because I was listening rather carefully. My sense of yesterday was that we had, as you may recall, before us the series of suggestions from Maureen and Carlton about some big, broad areas we might work at as first items. And I sensed a gradual agreement that those were at least the big front four, fsa “t = ’ “aca MILLEA REPORTING CO, INC. $07 C Saeet, NE Washington, DC 20002 4 388 but without any agreement as to whether those were the only, what order, et cetera. My suggestion would be that staff begin to develop materials on that, and I think we might want to come out rather specifically on the issues that you have just mentioned. But it seems to me they fall in the general context of, for example, the development of community care, adequate care for those who are infected with HIV virus, it is part of that whole broad bit. But that if we asked them to begin to develop some materials for us in each of these areas we would have some real red meat to work on when we next get together, and you working with Maureen might decide ~- which you want to move in first. COMMISSIONER SCOTT ALLEN: One of the things that I would think first would be helpful is to look at the continuum of care of an individual, because that is what we are really dealing with, is where are the gaps. And when we walk through the beginning point of the test, whether he test negative, how do you respond to that, all the way to death, and to see where the gaps are in the services would be very helpful to me. And -_ ae a ae Meee ee Se co 7 = —_ © eee eee Ae tae Soe le, ened dete ce eee See. eee ee” MILLER REPORTING CO , INC, 507 C Steet, NE Washington, DC 20002 (202) 546-6665 389 that’s basically the emphasis, are the people getting care, how do we stop this epidemic. COMMISSIONER ROGERS: That ought to be our touchstone, shouldn’t it, are we getting care to people who need it? And it seemed to me Belinda and her panel yesterday just vividly illustrated that powerfully. That’s where we ought to come up. COMMISSIONER SCOTT ALLEN: I think that should be the touchstone to see where are people losing their jobs, or where is it that they are not getting the medical care, that continuum type of education, are the people in the prisons getting the education not to spread--I know that is big, but just to keep it along, that would be helpful to me, but that is just one person’s opinion. MS. BYRNES: If you could bear with us as we challenge ourselves to do as much as we can at each meeting, I think that is a terrific suggestion. We are talking about the continuum of care, so maybe we won't take the whole ball of wax of care, but begin with testing and counseling and the issues where the diagnosis does begin, and hesitancies about even a 7 eth elt te mi oa > ogc ee eeltéi‘(