Gene Matthews



CHAMBERLAND: This is Dr. Mary Chamberland, and I'm here with Mr. Gene Matthews at the Centers for Disease Control and Prevention in Atlanta, Georgia. Today is Tuesday, November 7, 2017. I'm interviewing Mr. Matthews as part of the oral history project The Early Years of AIDS: CDC's Response to a Historic Epidemic. Gene, welcome to the project. Do I have your permission to interview you and to record this interview?

MATTHEWS: Yes, you do, Mary.

CHAMBERLAND: Gene, you were the Chief Legal Advisor to CDC from 1979 to 2004. You arrived two years before the first MMWR [Morbidity and Mortality Weekly Report] on Pneumocystis carinii pneumonia among homosexual men was published in June 1981. You and your office were deeply involved in many of the pivotal issues and decisions during CDC's early response. Also, during your 25-year run at CDC, you led the establishment of the CDC Public Health Law Program, an area 00:01:00you continue to work in at the University of North Carolina's Institute of Public Health in Chapel Hill. But before we delve into the details of all of this, let's talk a little bit about your background. Could you tell us where you grew up and about your early family life?

MATTHEWS: I grew up on a farm in North Carolina, Mecklenburg County, but it was very rural. I went to East Mecklenburg High School in Charlotte and got a really good high school education. I then graduated from University of North Carolina [UNC] Chapel Hill. I went on to law school there and then had a job in Washington with the US Department of Agriculture. I met my wife at UNC Chapel Hill, and we spent three and a half years in the '70s out in Micronesia in the 00:02:00Trust Territory of the Pacific Islands, settling World War II claims. It was a great gig. When I came back, I caught on with the Department of Health and Human Services [HHS] and came here in 1979.

CHAMBERLAND: What got you interested in going to law school?

MATTHEWS: I don't know-- I was attracted to it. I had actually started as a freshman at NC [North Carolina] State in engineering. Word was I made an A in freshman English at NC State. They all told me I'd never be worth anything as an engineer, so I might as well be a liberal arts major. I just thought law was a good fit. It was something to work with people and work with problems, and I was attracted to it.

CHAMBERLAND: Based on what you just told us, it sounds like after graduating 00:03:00from law school that you were drawn into a career in the federal government and federal government service. What influenced you to go down that pathway?

MATTHEWS: I don't know-- it was just an opening. It was an opportunity. I had done some work in law school with a private firm and so forth, and we had an opportunity to take a job in Washington, DC [District of Columbia]. My wife had the public health degree. She was getting her masters in public health when I was finishing law school. She was with the Fairfax County Health Department while I was with US Department of Agriculture. Then we caught a flier and went to Micronesia, but it gave me time to rethink when we came back. I was really drawn to public health.

CHAMBERLAND: That's interesting that your wife had a parallel career in public 00:04:00health and maybe led you a little bit.

MATTHEWS: She did. More than a little bit, thank goodness.

CHAMBERLAND: You mentioned the Department of Agriculture. How then did you make your way to Health and Human Services and CDC?

MATTHEWS: Again, it was a cold rainy day in Washington, DC. Someone said they're looking for lawyers to go to Micronesia to settle World War II claims, and I said, where do you sign me up? So we did that. It was a great adventure, because we went to all the remote atolls in Micronesia and did some really amazing things and had no kids. Then at the end, my son was born at U.S. Hospital on Guam, so he proudly claims himself to be a Pacific Islander. We came back to Washington about the time of the [U.S. President James E.] Carter election, so 00:05:00there was a turnover in government. I made it a point to try to get into well-health law and worked in DC for a while. Then the job here in Atlanta came open, and we came here in 1979.

CHAMBERLAND: You filled out an application and were selected and came to Atlanta from Washington?

MATTHEWS: Surprise, surprise. Right place, right time, because I had no real academic background in public health, just an interest in it, but I had worked in -- I was with the Department of Health and Human Services General Counsel's office in DC, so it was an interoffice transfer to come to Atlanta. They were looking for lawyers inside the Department at the time to come to Atlanta and take the job here.

CHAMBERLAND: That's an interesting point, because if I understand this 00:06:00correctly, you were working as CDC's Chief Legal Advisor, but your boss, I guess, was at HHS in Washington.

MATTHEWS: Yes.

CHAMBERLAND: That sounds like a delicate balancing act, like wearing two hats, having two bosses.

MATTHEWS: Yes. Really, technically, my boss was always through a chain of command of lawyers to the General Counsel. My boss was the legendary career lawyer in the Public Health Service, [Richard J.] Dick Riseberg. He really mentored me and saved me from myself many times from doing stupid things. It was also clear that I was --when I came here, I was the only lawyer at CDC. The rest of the office grew over time. It was clear that I needed to provide to the 00:07:00satisfaction of the CDC Director, or I wouldn't be around long. I was not stupid. It was always a bit of a juggling act between the two chains of command, but I was situated here. I really was able to build the office up, through the generosity of CDC, to give me attorney positions that I could fill and add on to the staff as the responsibilities of CDC grew.

CHAMBERLAND: The office was a staff of one, yourself essentially?

MATTHEWS: Yes, and a very savvy veteran secretary, Celia Mills. We still email each other. She's in Mississippi now. She broke me in, and without her, I would have splattered spectacularly in the early years.

CHAMBERLAND: When you arrived in 1979, Dr. William Foege was the CDC Director. 00:08:00Who were some of your other contemporaries at the time of your initial arrival?

MATTHEWS: That's a great question. You see, I came in awestruck. I touched on this in the "We Were There" question-and-answer series a couple of weeks ago, because there were these -- to me, I had never seen a group quite like this. The leadership was [Dr. William H.] Bill Foege, [William C.] Bill Watson, [Dr. Walter R.] Walt Dowdle, [Dr.] Mary [E.] Guinan, and [Dr.] Claire [V.] Broome. They were these giants that had slayed smallpox, (along with) Bill [G.] Griggs. I remember I would go to the first Director's -- the Director's -- staff meetings on Wednesday, and, of course, I was the youngest kid in the room there. I would watch this exchange between them on a particular issue, and I thought, 00:09:00"My gosh, I am way over my head." They were really smart, they were very functional, they could finish each other's sentences. They had beaten smallpox. That was no small thing. They were also still reverberating from the firing of [Dr.] David [J.] Sencer, who preceded Bill Foege-- he was fired as a result of the swine flu affair. So that was also still reverberating.

The next youngest, the next newest member of the immediate office staff, the "direct reports" to Bill Foege, was [Donald A.] Don Berreth. We just connected 00:10:00with each other, and I learned my craft with going to lunch at least twice a week with the CDC Public Affairs Officer. He was very legendary in how he viewed the role of a federal agency, and (he was) very easy to deal with. Then about the same year that I came, a little later, Martha [F.] Katz came into the policy office, and she soon replaced [Norman W.] Norm Axnick. It was Martha Katz and I and Don Berreth and Virginia Bales -- Virginia Harris -- she had been here longer. Bill Foege and Bill Watson were fairly intentional about lifting up females into leadership positions, and so there was a series that came through. 00:11:00It was an old guard that was very daunting to me. I was part of these new kids that came in in the 1980s, and then we were immediately thrown into the breach of the AIDS [acquired immunodeficiency syndrome] wars.

CHAMBERLAND: Before AIDS came along, what were some of the hot-button issues that you dealt with? What were they looking for from their General Counsel?

MATTHEWS: They were still trying to figure out what a lawyer was supposed to do and how to connect. I replaced someone who had been there a while. Part of what I did was fending off demands by private litigants who were wanting to take depositions and chew up the time of the CDC officials who had gone out and done 00:12:00an investigation of what caused a salmonella outbreak at the church supper or whatever. There were ways we developed to fend that off, so that was part of it.

Really, the first year I was there in June, we had the outbreak of toxic shock syndrome. That moved CDC back into the national center stage, after having a quiet period after the swine flu affair. That turned out to be some significant legal issues that bled over into the confidentiality questions that came up with AIDS in a quick amount of time.

CHAMBERLAND: Yes, you just alluded to the fact that a few weeks ago, you and some of your colleagues from the toxic shock investigation presented at the CDC 00:13:00"We Were There" symposium. Two years, and AIDS comes along. How did you first get involved in AIDS? Was there a specific issue that the scientists came to you about? Did you insert yourself into it? How did this all happen?

MATTHEWS: I was in the room in June of 1981 in Room 207, the Director's conference room, the day that [Dr. J. Michael] Mike Lane reported to the Director and the senior staff -- each of the Center Directors and the direct reports in the immediate office.He reported about these cases of Pneumocystis pneumonia among four gay males in Los Angeles. The thinking then was that it might be related to perhaps a nitrous inhalant or whatever, but it was a puzzle, 00:14:00and that was how it started. It quickly rolled on, and certainly, by the end of that year, by January of 1982, it had become a real crisis about what to do -- maybe it was December of '82. It took a while to build, but it came into the issue of protecting the blood supply and blood screening and dealing with all the blood collection agencies. It rolled up pretty quick. At first, I was just involved more on the periphery of what were the policies and what were they going to do and how do we articulate them. Then we got into the confidentiality 00:15:00issues really quick: how to protect the names. All that tradition comes from STD [sexually transmitted disease] work of contact tracing. You don't name the informant when you go out to the other people. That protocol was long established for 40 years, and in the CDC DNA. It really became critical by certainly 1982, late '82.

CHAMBERLAND: Yes, I very much want to have you discuss in some detail some of these very critical issues that you and your office were drawn into as the epidemic unfolded. Before we go into some of these, it would be helpful if you 00:16:00could set the scene for us in terms of what the political and social context of the time was, because it was a unique time --maybe not unique, but it was an interesting time.

MATTHEWS: We're into a throwback of it now actually in 2017. In November of 1980, which would have been just before the AIDS outbreak occurred the next June, there was the presidential election when Carter was defeated by [U.S. President Ronald W.] Reagan. There was a change-over into a Republican administration. It was more conservative, and a lot of the social conservatives were beginning to come in. At the initial moment, it was more a question, like 00:17:00now, of what's going to happen to the CDC budget under the Reagan administration. Simultaneously, my work was ramping up. By then, I'd hired a deputy, and I think maybe it was in '83, two really very good attorneys, Verla [S.] Neslund and [Martin R.] Marty Siegel. Verla stayed with me for years and just recently retired as deputy at the CDC Foundation. She carried a lot of the heavy lifting on AIDS, because she came on board, I believe, in '83, just as we were really getting serious about legal issues pertaining to confidentiality, access to records, testimony, all that stuff.

CHAMBERLAND: You mentioned the Reagan administration coming in and with it, a 00:18:00real ushering in of a conservative agenda.

MATTHEWS: Yes.

CHAMBERLAND: It was the time of the New Right, the Moral Majority.

MATTHEWS: It became clearly politicized. It took a little bit of time, not long, where eventually AIDS became a wedge issue in American politics. If you want, I can step back a minute, because I figured out fairly early on that what was happening in this country with respect to AIDS -- because it was crazy. I mean, the country went crazy for a six-month period the year before on toxic shock syndrome, and then here comes AIDS. In hindsight, it was pretty clear to me that the country was going through a grief reaction. This is what I teach my graduate 00:19:00students now, that particularly the US -- there was a little more than a generation that lived in this fantasy world of the antibiotic bubble, with the advent of penicillin and antibiotics after World War II, which then had an impact on STDs for a while. The last of the great dreaded diseases was brought to heel with the Salk polio vaccine in 1955, and it took a little while for that to be totally disseminated, (followed by) the Sabin vaccine in 1960.

We were in this era in the '60s and '70s when there was no dread disease for 00:20:00which there was not either a prevention, a vaccine, or easy cure -- penicillin. AIDS came along and was robbing us of that fantasy. It brought us back down to what the developing countries had always been living in. This was our unfounded fantasy: we just didn't think there would be another emerging infection that would bite us -- and here was this disease that was killing people. We weren't quite sure how it was spreading. It was an awful death, and the country went pretty whacko.

Then the first categories --_since there wasn't any laboratory analysis, it was defined by a syndromic definition -- and the first categories were homosexuals 00:21:00and Haitians and hemophiliacs and heroin users -- the 4 H's. All of those were in a category that made a certain political attractiveness for the neoconservatives to drive a wedge issue. Let's isolate them and keep them from harming us -- white, upper-middle class -- that don't have to deal with this. So it took -- and the country was crazy. They wanted a quick answer. They wanted an answer to what was --just like very quickly epidemiology had said, bang, don't use Rely brand tampons, and it will lower your chances of having toxic shock syndrome. We were looking for the quick, easy answers, and this was not quick, it was not easy. We hadn't even figured out what the bug was.

Then it started moving into the blood supply, and we were having to deal with the hemophiliacs and people who had received transfusions, and the country got crazy over it. I could go on a bit, but that's a little bit of the context: both the politicians and the social conservatives could make political points over bashing those who had this. I guess the low point of it was -- [Reverend] Jerry [L.] Falwell and some of the conservative evangelicals who surely knew better were on TV getting a lot of air time, saying that AIDS was God's just judgment upon those who practiced homosexual behavior or took drugs. It was blame the 00:23:00victim. It was part of the larger scheme of going through the stages of grief --denial and shock and anger -- and we were in our anger phase culturally. Everybody was mad about it, and it played right into the politics quite nicely.

CHAMBERLAND: The political climate certainly had an impact, as you alluded to, on federal funding for AIDS, in more ways than one.

MATTHEWS: Yes.

CHAMBERLAND: For one thing, federal funding that came to CDC and other PH [Public Health] agencies was pretty lean. This was a time when people were interested in cutting budgets. I believe for the first few years, CDC's AIDS allocation came via these so-called supplemental appropriations bills. Things 00:24:00got a little bit better, and by '84, '85, money allocated to the Public Health Service for public education -- that was considered -- again, because we didn't have a magic bullet, we didn't have a drug, we didn't have a vaccine. CDC had an intense interest in working with state and local health departments and community-based organizations to try and get out information about the syndrome and how it was -- at least as best we knew -- how it was transmitted. CDC would get -- I think about this time was getting about four million dollars. Most of this is very traditional. CDC would send money out to state and local health departments, who in turn would make awards to these community-based organizations, among others, to actually undertake the work of public health education. It wasn't too long before problems arose and ultimately led to a 00:25:00congressional amendment to the yearly AIDS appropriations bill, which had some significant consequences for CDC. I was wondering if you could give us a little insight, a little background into all of this.

MATTHEWS: You're wanting the salacious saga of the AIDS smut guidelines, correct?

CHAMBERLAND: Go for it.

MATTHEWS: Yes. Part of that back story, going back to the antibiotic bubble that we lived in in the '70s, and that was also the whole era of the sexual revolution and much increased promiscuity. Randy Shilts writes about it in And the Band Played On. Armistead [J.] Maupin out of San Francisco in his series, Tales of the Cities, really catalogued what life was like before AIDS. It was 00:26:00pretty wild, which also triggered the neoconservatives to say, this is all bad and we need to go back to Puritan behavior and so forth. were really grappling with what do you do to prevent it. We could track it, and we were fighting the war about maintaining the confidentiality of AIDS reporting and HIV [human immunodeficiency virus] reporting. All that was going on, but that's not good enough to a country in 1980 that was wanting an immediate solution: give me a pill, give me a vaccine, tell me-- --

We were having to sell the prevention idea of safe sex and no body fluid contact. We were also having cases occur in healthcare service providers as well. That then logically led, as we were putting -- money was starting to pour 00:27:00in, and the counterweight to the neoconservatives appeared politically in the form of Act Up, the Lavender Hill Mob, [Laurence D.] Larry Kramer, all of the AIDS activists that eventually really changed the world. They're a model for how public health needs to look at becoming engaged in the political world, rather than running down a rabbit hole and saying, all we do are peer-reviewed studies, and we're not involved in the dirty politics.

There was this tension going on, but we had to be doing something. The criticism was, you're just counting dead bodies. We were getting lambasted by the AIDS activists. We need more than you publishing papers on dead bodies. We're dying 00:28:00out here. We need something. Where's the vaccine? Where are the drugs? Are there drugs that we could get internationally that would-- Everybody was looking for that magic bullet, and we didn't have it. Safe sex, healthcare --

CHAMBERLAND: Universal precautions.

MATTHEWS: --worker precautions, all that -- but we were getting money to go do something. What do you do? As you say, we have this long tradition of sending money out through CDC to state and local health departments and on to community-based organizations to prevent AIDS. It wasn't rocket science to figure out if you're going to try to promote safe sex behavior, then you've got 00:29:00to -- there's only so far you can go with negative reinforcement, so how do you put a positive, attractive face on safe sex? Again, here we are in the middle of this conservative constriction going on politically in the Reagan Administration, and we come to find out that some of the money going out through our health departments to community-based organizations who were working particularly in the gay community and in San Francisco were taking the money and allegedly doing things like -- in other words, eroticizing safe sex behavior. It doesn't take long to realize that you're going to start bumping up against some political, ideological boundaries here. What happened was we had -- the first 00:30:00memorable event came out of San Francisco, when one of the community-based organizations put out comic books that graphically portrayed safe sex behavior among gays. Then there were rumors of "Tupperware parties," in private homes. Perhaps our own money was used to pay for some "performance art," shall we say. This then attracted the attention of some of the conservative senators and congressmen, who had a stroke. [Senator] Orrin [G.] Hatch, [Senator] Jesse [A.] Helms, they stroked out about it. They called the White House, and they stroked out, and so the message ran right down the food chain: the Domestic Policy 00:31:00Council called the [Health and Human Services] Secretary, the Secretary called the Public Health Service, down to the CDC Director. The basic question was, "Are you crazy? What are you doing?" And it wasn't a good day. Then, we were starting to develop, how do you rein this in? How do you do damage control?

Part of it was legal, part of it was contractual, part of it was public relations, and part of it was political, and we were caught. AIDS during this era was always caught in a squeeze between the conservatives saying, "What are you doing with my tax dollars, putting out dirty comic books and encouraging parties where homosexual activity is displayed for all who are in attendance?" I don't know if that was really paid for, but that was the urban legend that we 00:32:00were beating on. On the other side was the perfectly logical argument raised by the AIDS activists: "How the hell are we going to do anything to stop this if we don't get real about promoting safe sex?" People are dying here, so they had moral indignation on their side to match what Senator Helms was saying. So here we are, caught in the middle on that, and we're starting to put together -- we've got to put some guidance out. Do you want me to go on to the litigation and all that?

CHAMBERLAND: Yes, please do, because - maybe just to pause for a second here. CDC wasn't normally in any way tracking or asking health departments to track how the money was used. We might have required some minimalistic reporting as to how the funds were expended, but --

MATTHEWS: Yes. When you get these bulges of money pushed in, then you're under 00:33:00pressure to get it out the door in that fiscal year, or it expires. This has occurred several times in my tattered career. It occurred with AIDS. The same thing happened after 9/11 -- get that preparedness money out the door to the states right now, and there's not a lot of tracking done. We can't staff up inside an agency the ability to track all the dollars, and you've got to get it out the door. So yes, it wasn't normally --under Grants Management theory, you are giving the money to an entity and giving them guidance on how to use it, and it's up to them how to do it without great micromanagement. But when they start doing dirty comic books, then you're held accountable, because this is taxpayer 00:34:00dollars at work for you, being used to do these things in my name. "I find this morally objectionable," said Senator Helms, so we get into those dilemmas.

CHAMBERLAND: In fairness, some of this educational material that was being put out by the community-based organization, not all of it was actually being supported by federal dollars, because they had other sources.

MATTHEWS: Right. They had the same problem, because all of a sudden, you've got a community-based organization with hardly any financial management other than maybe a checking account and money coming in and money going out. They're not identifying money with a particular source-- they're trying to get it done, because, to be fair to them, people are dying. We've got to stop this. We've got to do something about it. They're not tracking it as well, but this is pure 00:35:00catnip to the media when one of these events occurs, because what could they not like? It's AIDS, it's politics, it's thundering neoconservatives, it's AIDS activists, it's sex --you couldn't make a better story. The media is on us about it, and then there are going to be congressional hearings, and what are you going to do about it. We're scratching our heads, trying to figure out how do we control this.

CHAMBERLAND: It was more or less left to CDC to come up with some --

MATTHEWS: Oh, yes!

CHAMBERLAND: Options as to how to rein this in. It wasn't imposed --

MATTHEWS: No. It was imposed to the extent that, again, going back to the great food chain, the White House was beating on the Secretary, the Secretary was beating on the Assistant Secretary for Health, who was beating on CDC. We were 00:36:00left in the position that floggings will continue until morale improves. That's a common occurrence in an operational governmental agency, so we had to do something.

CHAMBERLAND: What did we do?

MATTHEWS: It wasn't our high watermark of savvy behavior, but we started putting out what we called guidelines, AIDS content guidelines, inside the silo here. Don Berreth and I called them the "smut guidelines." We're putting guidelines out to the state and local (health departments) to pass on to the community-based organizations to not use the money in a way that would-- we were 00:37:00stumbling for a while, trying to come up with language. We asked them to put together community panels who would review the materials and make sure that the materials adhered to community standards. It was the same era that the pornography definition was all up in the air, and we were adopting some language. It was our own homemade sin we were putting together and putting out there.

The states, the locals, and the community-based organizations were not thrilled about this-- this was not --this is more managerial burden you're now pushing down on us, because the food chain has pushed it down on you. This is going to take up time and energy, and did we mention to you that people are dying? Okay? We don't need this Mickey Mouse --they were responding with that counterweight, 00:38:00true passion, that this is stupid. We've got to get on with this. Meanwhile we would bounce along. We went through these series of evolutions, and it would quieten down for a while. We'd say, okay, we put guidelines out there and whatever. Then we would get a call from the CDC Washington Office. One of my dear colleagues would call and say, "Gene, I'm sorry to announce that we just got a call from the Hill. a It appears we've got another pernicious outbreak of smut on our hands to deal with." It would be another event of some type had occurred, and we've got to go do damage control. We would try to tighten up the guidelines or whatever, and appease our political masters, who were --they're 00:39:00not happy campers, you know? This is a conservative administration saying, what are you doing? Eventually, while we were doing that, the American Civil Liberties Union [ACLU] and Gay Men's Health Crisis and the Southern District of New York dropped a lawsuit on us.

CHAMBERLAND: Even though Congress hadn't mandated how CDC should go about this, they had attached an amendment to CDC's allocation -- I think this was Helms --

MATTHEWS: The Helms Amendment, yes.

CHAMBERLAND: And this prohibited the use of federal funds for --

MATTHEWS: For promoting homosexual activity, something like that, but it was -- yes, this was the Helms Amendment. I can't remember. It was attached to the CDC appropriations somewhere along '86 or '87, somewhere in there, that we could not promote homosexual activity --

CHAMBERLAND: Offensiveness, I think --

MATTHEWS: Yes.

CHAMBERLAND: I think it was the "offensiveness prohibition," or something to 00:40:00that effect.

MATTHEWS: Right, and we started weaving some of that language into the guidelines. Of course, that was just raw meat for the civil liberties lawyers, and they had the moral high ground, really. Here we were doing this, and there were two -- it was called the Gay Men's Health Crisis -- there were two of them: Gay Men's Health Crisis versus Sullivan who -- [Dr. Louis W.] Lou Sullivan was the Secretary of (Health and) Human Services at the time. It was one case that was argued up in 1989, which was more a procedural -- both parties moving to have the case dismissed or have them declared the winner, because the other side is stupid, basically. There was a special master appointed and all that. That ruling was that some of the charges, some of the allegations, are not valid but 00:41:00some are, and the case can go forward. Then we really got serious, and we got into discovery. They were wanting all the records we had on this, and it was a nightmare. Before the second decision came down in May of 1992, the politics had calmed down a little. There was a second congressional wording that came I think around '90 or '91 in the Appropriation Act, that calmed down the gay bashing that was part of the original Helms Amendment. It was called the Kennedy-Cranston Amendment. [Senator Edward M.] Ted Kennedy the Democrat and [Senator] Alan [M.] Cranston the Republican put language together that said that 00:42:00CDC funds or HHS funds shall not be used with the direct intention of promoting sexual activity, be it heterosexual or homosexual. It was a more evenhanded (approach). Again, we're fighting inside the silo, up the chain of command. I've said to my students, here we had this lawsuit to defend, and we had -- meanwhile, we still had some other standard that related to offensiveness and community standards and whatever.We could tell we were just getting mopped across the floor by the Gay Men's Health Crisis and the ACLU and Southern District of New York. It was not going well, and we were screaming up the 00:43:00stovepipe, "We need to settle, we need to settle," and (the answer was) "No, no, no." It was a political imperative. (They) didn't want to settle this thing, so we went to -- We finally got a decision on this, and we had at that point not adopted the Kennedy-Cranston language in the CDC guidance. We'd gone through iterations and put our language out for comments and sought comments and then did whatever we did, but we got a ruling, then called Gay Men's Health Crisis II in May of 1991, which --

CHAMBERLAND: '92 maybe?

MATTHEWS: 1992, yes. I'm sorry, 1992. We got the second decision that ruled in favor of Gay Men's Health Crisis-- it basically said this is not constitutional behavior, and you've not done this appropriately. Fortunately, we were then in 00:44:00the window of the run-up to the '92 election that [U.S. President William J.] Clinton came in on. By then, our political masters up the line in the [U.S. President] George [H.] W. Bush Administration realized we needed to cool this off. We did settle, and we incorporated in our guidance the -- we kept in place, I'm pretty sure, those local review panels.The standard was then just the boilerplate adaptation of the Kennedy-Cranston language that had been passed by Congress with bipartisan support. That took the wind out of the political sails of both the far right and the far left. It quietened down for a while, but it was -- I would rather have eaten a live toad than have to go take that case into 00:45:00federal court, and it was a tough time. Credit on this goes to Verla Neslund. She was the real heroine here that worked through all that. She was my Deputy and lead on it. She worked with Steven [C.] Bennett, who was the Assistant US Attorney in the Southern District of New York, during that whole four years of litigation.

CHAMBERLAND: Could you just tell us a little bit about what your office would have to do in this kind of a situation.You personally are not arguing these cases in federal district court, but you're obviously heavily briefing the attorneys that are, so what's your --

MATTHEWS: Yes, we're having to give them -- we're having to train -- in other words, each federal court is different. The way the government operates is that they have a US Attorney's Office, just like here on the toxic shock litigation 00:46:00in the Northern District of Georgia. We dealt with a brilliant assistant US attorney on that case, Nina Hunt.They know the court-- they know the procedure. It's all different, so you can't get each federal agency having a bunch of attorneys trying to figure out what way you proceed in these different federal courts, so they're the ones. They know the judges, the procedure. They're the ones that are arguing the case. We've got to do a Vulcan mind meld with them beforehand, so they understand the nuances of what's going on, the politics, what the facts are. We give them affidavits and manage all the discovery. Again, we couldn't turn over individual names and all of that. It was pretty bloody.

The way it ended is Clinton won the election in November of 1992, so we had a 00:47:00Democratic administration coming in. Very dutifully, as I always did in a change of administrations, I packed my little briefcase with what's hot and what's not. I trotted up to Washington, DC, to brief the brand new (HHS) General Counsel, who are always political appointees, about here are the things, here are the problems that you're inheriting. Here's some issues that will be coming up, you need to be alerting the Secretary and so forth and on. It was -- Harriet [S.] Rabb was the new General Counsel then -- and I brought her in the briefing on it. I showed her a comic book from San Francisco, and she nearly passed out.

What then happened was that political sanity finally sunk in. This was '92, '93, and the country had changed. We were no longer in our anger stage and our 00:48:00depression. We were trying to get to acceptance and resolution in our cultural grief reaction. I think also there were sane voices from the political left, the AIDS activists. [Timothy M.] Tim Westmoreland and Ruth [J.] Katz, who were on [Congressman Henry A.] Waxman's and Kennedy's staffs, said, "Look, we cannot continue to have federal money doing this type of activity. It's got to go on. There's money out there that can pay for that, but we've got to keep the Feds out, because this will only be used to tie a can around the Democratic administration and beat 'em up." Before, the problem was that it was a lot of fun to drag these things out and make the Republican administrations look like a 00:49:00bunch of knuckle-dragging Neanderthals on it. The political left was very interested in having us make a mistake and do a "gotcha," and so we're back in the barrel. So, it drifted away-- it disappeared. We didn't have a lot of that kind of issue again after the first Clinton Administration, but a lot of time and energy were spent on this.

CHAMBERLAND: Sounds like it. Were CDC staff ever put in a position of having to provide testimony during these cases?

MATTHEWS: Oh, yes, the most interesting piece of testimony we did was in the run-up to the Americans with Disabilities Act [ADA] in 1990. The testimony was actually on a tuberculosis [TB] case. It was called Arline -- A-R-L-I-N-E. We 00:50:00also did testimony earlier on school attendance situations, the Ryan White-type cases of whether Ryan White could attend school. I don't think we testified there, but there were cases like that in '85, '86, '87 where, should children not be allowed to attend school, or should airline pilots who are HIV positive be removed from their jobs and all that. It got into the issue of reasonable accommodation. The key case that didn't get a lot of attention was the predicate case for the Americans with Disabilities Act. It was a TB case called Arline -- A-R-L-I-N-E -- in which a patient with tuberculosis was diagnosed, and then 00:51:00could that individual continue to work if they were being treated, and what were the responsibilities of the employer to make reasonable accommodations. Yes, CDC people, the tuberculosis people, testified in that and provided affidavits, and the AIDS people did the same in the AIDS guideline-type situations as well. Ultimately, the Americans with Disabilities Act, which I've always taught is the highlight of egalitarian wisdom. All the other Western democracies followed behind the US in saying that a person with a health situation shall be given reasonable accommodation, an opportunity, and not just summarily cast out from 00:52:00the job. All the other modern democracies followed behind that as well.

CHAMBERLAND: Although this case of the teacher with tuberculosis, the Arline case, was certainly an important piece in getting to the ADA, certainly, HIV/AIDS issues must have been a big motivator for ADA as well?

MATTHEWS: Yes, but the staffers that were working on that on the Hill were not-- AIDS was the elephant in the room, but they weren't pushing it. They didn't want to get back into that old political trench war over AIDS. When it (ADA) went forward, it was more dealing with the high ground of the individual's need to be 00:53:00able to be accommodated to continue to work, if it's safe, etc., etc. I don't think the people working that issue on the Hill were using AIDS as the lead card on it, but it was clearly standing there, and it made a big difference downstream.

CHAMBERLAND: One of the other key issues that you've mentioned in passing a couple of times and I think really deserves some exploration with you is the issue around confidentiality, confidentiality of AIDS case data that was part of national surveillance that CDC was conducting with the support of state and local health departments. To start this off, can you explain what the concerns were and how real were these concerns? What was at risk here?

MATTHEWS: Clearly in the early years, AIDS was viewed as a death sentence, and it was also a career ender, generally. People were discriminated against if they'd been diagnosed with AIDS.Then it became even more crazy when the HIV tests came on line -- that we should test everybody for AIDS and not hire them if they've got HIV. That piece was running through it, and the difficulty from a public health agency standpoint is we were needing to do surveillance. We were needing to find out. We were needing information. We were needing to do contact tracing with the people diagnosed, to try to figure out what was the source of their infection. Was it needles, was it unprotected sex, was it a transfusion, 00:55:00were they getting it off a toilet seat? That kind of scare tactic was running through. In order to get -- it's just like in a typical STD investigation: you say, "I need this information," and they say, "I could get fired-- I can become a social leper if people find out I'm diagnosed with AIDS or carrying HIV." The traditional STD 40-year-old protocol was to say, "No, we will protect your confidentiality. We're not going to tell anybody else your name. We will go to them just as we're coming to you now. I'm not saying to you who gave -- how it is we came by your name, and just as I protect my sources from you, I will protect you from the further people we talk to." That was the conventional 00:56:00wisdom that we inherited when AIDS arrived on our doorstep.

It became more complicated. Again, people were suing each other, who got AIDS from what. You had the politics in Washington, in particular, and in state houses, of 'I want to know the names of those in my district that are diagnosed with AIDS, how many are there, where are they.' All of that, and we couldn't go there. We had to hold it off, and that really fell on my shoulders. How do we -- because as the political ante ramped up, we were starting to go to hearings and get questions on the Hill. We realized we couldn't do that, and you could see them coming. There were litigation demands: what was the source of this 00:57:00hemophiliac or what was the source of the blood supply, whatever.

I realized that there was a chance -- there was a little-known provision in the Public Health Act. It was called 308(d), that had its history in the drug abuse research that allowed people who were interviewed about their illegal drug use to be guaranteed an Assurance of Confidentiality that the information could never be obtained by criminal investigators and could never be used against them. It protected against subpoenas and criminal subpoenas. It was a federal law that preempted over state and local law. It had also been used--and also by 00:58:00that time the National Center for Health Statistics, which was part of the Public Health Service, I think at the time -- it eventually became part of CDC -- but the way the statute was written, it was for all the Public Health Service. It had only been used for the NIDA, National Institute of Drug Abuse, at the time, and then NCHS, the National Center for Health Statistics, was using it. I thought, why can't we give that a try?

We worked inside our silo to say, let's create an Assurance of Confidentiality to say to Mary, "I want your information, and we're going to protect this. There's a special federal law, and that information will not be used in any way other than the ways we're telling you now. It will be used for research 00:59:00purposes. We may share it with another researcher or a health department, but they cannot disclose it to anyone else, just like we cannot." It took a little while to educate inside the CDC silo, because how we articulated it is, "This is now a steel-walled canyon you're going down in. Before you get that information from Mary, you need to think now how you're going to want to use this information five years from now, because you will not then be able to do a 'freezer study' if you haven't articulated it now. You can't five years later say, 'Oh, we've got samples from [Dr.] Mary [E.] Guinan in our freezer here at CDC. Let's test it for something else.'" No, you're putting this under a special Assurance, and we believed it also was protective against a congressional 01:00:00subpoena. Now, that's a big damn deal, okay? That's separation of powers, congressional oversight -- what do you mean, you can't give this information to us? We were gulping and putting it down, and the Department bought off on it. The lawyers bought off on it, and to their credit, the policy makers bought off on it in the Reagan administration. We put that down and put it out there. It was one of those examples of where you glue something together in haste and hope it can get you through the next crisis cycle, and the damn thing flew. It stayed there, and eventually, I think it was maybe '88 or so, the whole-- Again, when sanity started to come back to the political system, then a little rider was put 01:01:00in the Public Health Act that made it very clear that that Assurance of Confidentiality definitely applied to AIDS-related records and more general research purposes. We had a couple of hiccups where the Congress was wanting some of that information, and we would say, "We're very sorry, but that's protected under a special Assurance of Confidentiality under federal statues enacted by the US Congress. We cannot give that to you, and there are good policy reasons why, and here it is," and it stuck. The damn thing stuck.

CHAMBERLAND: And it became part of the statute, as you say later on.

MATTHEWS: Yes, and it was the gold standard. We had to have that. That was the ability of CDC and state and local health departments to do their jobs. See, we could then pass that Assurance protection onto them. They're gathering the 01:02:00information as our agent under that federal authority. We were also putting the information -- collecting it without names under a Soundex system and all of that, but there were enough indirect identifiers in small-cell data where people could be identified, so we had to -- we used both of them.

CHAMBERLAND: Yes, to unpack this a little bit: --CDC initially in 1981 had state and local health departments reporting case data, just surveillance data, to CDC at that time on a hard-copy form that actually had personal identifiers -- name, address, date of birth, etc. Then it wasn't long before health departments, notably the New York City Health Department, started to have some unease about 01:03:00that. Ultimately we, as you mentioned, switched to this system that was called Soundex, where names were no longer reported to CDC. State and locals had them, we didn't. The names were coded using a combination of letters and numbers combined with the date of birth with pretty much a unique identifier, because it was important on a national basis not to have duplicate reporting. There was that, so that was some element of how CDC approached confidentiality. As you say, the state and locals still had the personal identifiers. They needed it, and this Assurance was an umbrella for them.

MATTHEWS: Yes. If they were collecting it as our agent, then they could put the protection to that as well. They were passing their own laws at the time or policies, but again, you had 50 different states and 50 different variations.

CHAMBERLAND: At the same time, CDC, besides doing surveillance, was doing a lot of case investigations, because, as you said, we were trying to ascertain if there were other unusual modes of transmission and all that. Of course, working with state and locals, names of people would be collected or recorded, if you will, as part of the investigation. We still, in some instances, we tried very hard to leave those personal identifiers at state and local levels, but again, as an investigation that is active and ongoing, it's unavoidable to collect names.

MATTHEWS: Right, and we were proud to say for a long, long period of time, no AIDS-identifying information has ever been disclosed from this system. That brought us up to the Bergalis case, where we found a new route of transmission that we didn't think existed. But we were able to -- and it was a continual 01:05:00battle -- to provide some reassurance to those diagnosed or those tested as positive for HIV that they weren't going to get harmed by this. It was an ongoing thing through that whole period of time.

CHAMBERLAND: I've forgotten the bit about the Assurance including language about the information or the specimens.Oftentimes, in these investigations, we collected blood and other specimens that could only be used for the purposes stated. Hence, your reference to the freezer study. CDC would stash these specimens.

MATTHEWS: Yes. There were some very colorful conversations I had on occasion 01:06:00with some of our laboratorians, who thought, "Oh well, gee, this would be a good idea. Let's go back and test those specimens for this or that aspect." No, this was the pact you made. You took this information, and you went right down the steel-walled canyon. Once you're down in there, the only way you can get out is go right back up to the top and ask the people that you got the information from, can we now use it for this, which they don't do. We had to be clear about that. It cut both ways, and certainly, as a lawyer, it was a communications challenge to be sure that our investigators understood the long-term effect of how you articulate it now, you're going to be living with five years from now.

CHAMBERLAND: Has 308(d), at least within CDC, been obtained for other diseases?

MATTHEWS: It can be used for other diseases. When the law was modified in 1988, I believe, it became a different section in the Public Health Act. It's 301(d) of the Public Health Act, and that was made more general. No, you can use it for other purposes, but again, the limitation, the hesitancy on the part of the agency is, you don't want to use this because you've got Gene Matthews or his successors with a big stick, standing there saying, you cannot then subsequently use it in a way that you did not articulate on day one when that person gave their consent. You have made a promise, and a promise is a promise.

CHAMBERLAND: And it stood the test of time.

MATTHEWS: As far as I know, it's still going fine.

CHAMBERLAND: It has stood the test of time-- it's never really faced a serious challenge to your knowledge.

MATTHEWS: Yes, and it goes back to a teaching example in leadership. Sometimes, you scramble and put something together ad hoc just to save your skin for the next two weeks, but it sticks and it grows. You never know how these things play out over time to become something fairly significant. Clearly, we had to have that. We could not have done our job had we not figured out some way to do that.

CHAMBERLAND: Interesting. Gee, there's just so many directions to go here. Another topic that I think we could talk about, because in the early days it was 01:09:00very much one that came under a lot of active discussion in terms of how do we go about trying to stop the spread of this disease. We don't have a drug, we don't have a vaccine, our public education methods are being challenged, and the key word comes up: quarantine.

MATTHEWS: Ah, the quarantine.

CHAMBERLAND: Isolation.

MATTHEWS: Yes. If your only tool is a hammer, every solution is a nail.

CHAMBERLAND: What were the issues here? How were the battle lines being drawn?

MATTHEWS: As I recall, and I've taught this to my students, there were three waves of the great quarantine wars that occurred, if I remember correctly. You may have to help me. The first was immediately when it occurred, and the country went crazy and we were in our shock and anger stages. Then we need to quarantine 01:10:00anybody that's diagnosed with AIDS. Okay? Wait a minute, let's think through this. You've got -- what is it, barrier precautions? What's it called for healthcare workers?

CHAMBERLAND: Oh, universal precautions.

MATTHEWS: Yes, universal precautions --

CHAMBERLAND: To protect against blood and body fluid exposures.

MATTHEWS: Somebody lying in a hospital bed in end-stage AIDS is not going to be out in the community running rampant and spreading AIDS to middle-class Americans or something. But it was a perception: let's do something about that. Eventually, we pushed through. Then we got to the second quarantine occurrence, which was -- and you still hear this, we heard it a couple of months ago -- what 01:11:00about the intentional transmitters? In other words, those who have AIDS who are out there rampantly spreading the disease. Again, that's a great urban legend, but that was a very rare kind of case. How are you going to find them, and how are you going to quarantine them? There's a practice that dealt with this in tuberculosis, for the noncompliant tuberculosis patients who had active TB and were not coming in and getting their proper dosage, then at the local level -- that was one of the only vestiges of old 19th-century quarantine that was still 01:12:00in practice. That and mental incompetency proceedings where, again, how can public health under its police-power doctrine use that to remove the freedom of an individual to circulate in the rest of society? One was in mental incompetency, and the other was a recalcitrant TB transmitter. That model was there and it's still there, but it wasn't exactly a quarantine, it was -- and we went through this whole bit of levels of restriction moving up. For a while, there was great pounding and braying about, we've got to quarantine all these AIDS transmitters out there. I'm sorry, you were about--

CHAMBERLAND: No, no. Go on.

MATTHEWS: We got through that. Again, some sanity prevailed, but that's just raw meat for -- that's catnip for the media. For the political system, it's a wedge issue. It's them versus us, and it's emotional, it gets attention. Then the third era, which I think was the toughest, was after the ELISA [enzyme-linked immunosorbent assay] test became available. Again, if your only tool is a hammer, then every problem is a nail. We've got to test now. We know who's carrying the AIDS virus, so let's quarantine 'em. That didn't sound practical once we realized how many people there were and where they were and all that.

It was actually -- bless their dear hearts, it was the laboratorians that came 01:14:00up with the cogent answer to why you don't want to quarantine those that have been tested as HIV positive using the ELISA test. That was because we knew enough about the progression of the disease that by the time you showed --if you're infected on day one, you might not show up as antibody positive until weeks later. I'm a lawyer sitting here trying to explain etiology, but this made common sense. All of public health, you've got to have your science right, but if you can't then tell it in a compelling story, you're dead meat in the 20th and 21st centuries. You would get a positivity that would be weeks or months 01:15:00later, but we also knew by observations that the highest level of viral load would occur in that window period, where you probably were not showing antibodies and you were in a more highly transmissible state. It created a fairly practical argument that if you went with a procedure of tattooing or quarantining or especially identifying those that are HIV positive in the name of stopping the subsequent transmission, you are missing the most critical cohort that would be spreading --I'm not positive so therefore, I'm okay -- and 01:16:00you would increase the transmission through that policy.

We came up with more clever ways than I just said of articulating that, but eventually it penetrated. What we're saying is, you have to be practicing safe sex and universal precautions and all of this for everyone all of the time, because we don't have that magic test yet that could say this person is now infected and can transmit. To me, that was the hardest of the three great quarantine waves. It was always a temptation, and the politics of that are, again, just catnip for the system, for the culture.

CHAMBERLAND: Was this in your mind ever a real risk or threat? At the federal 01:17:00level, Congress, or the state level, were legislators seriously thinking of drawing up --

MATTHEWS: Oh, yes, they were all -- come on, this was again in the crazy years. In the first certainly five years, you had that stuff all the time. Some of them are on the books to criminalize intentional spreaders. See, it's the same thing. Here we are sitting in November of 2017, looking at the opioid epidemic and looking at how opioid -- in other words, to criminalize this further drives your disease underground and increases the transmission. It was the same principle. You've got to work on your prevention all day with everyone, and that was our 01:18:00message that we were selling in '84, '85, '86, '87, before the country became a little more sane about this. To all of us -- to you and me and [Dr.] Harold [W.] Jaffe and all of us that worked on this -- we all reflected it was a miracle that we survived. There were many days -- you know. I guess to me, again, one thing that I teach my students is, I think one of the high watermarks of CDC was in those darkest years, before the test and then when the ELISA test came on line in '85, where the pressure to demagogue the issue was the greatest. To 01:19:00CDC's everlasting credit, they just closed ranks and said, we are not going to do this, and we all took risks. We were all giving information to the minority staff on the Hill and to the AIDS activists and risking our careers with some communications that needed to be done to do the right thing. CDC, I think correctly, took the position that these ideas may be politically really slick and cute, but they're not based on good science, and in the long run, they will not work. We are not going to be a part of that, and if you don't like what 01:20:00you're hearing, it's going to take a long time, but this is the way we have to do this. I think in doing that, we gave courage to the state people and the local people to follow that model to the extent they could. I think that, of all things, was the high watermark of that era. Certainly, how I survived that I have no idea. Dick Riseberg and I would talk, and he would say "Gene, on any given day you can get hung for the wrong crime," and it could have occurred. That was part of that whole era of dealing with quarantine and dealing with these other collateral flash-in-the-pan issues that were there.

CHAMBERLAND: That's a nice segue to just get your thoughts on the topic of what 01:21:00CDC did do a lot of, which is to develop a lot of guidelines.

MATTHEWS: Oh, yes. Oh, yes.

CHAMBERLAND: These guidelines came out very early, '82, '83, long before we had an agent, long before we knew with certainty how the disease was transmitted. CDC put out recommendations as to how to avoid infection, prevent infection. How risky was that for the agency, do you think? What was your advice to the scientists who were developing these guidelines?

MATTHEWS: Gosh, those were such pioneering days. I haven't thought about that in a long time, but yes, again, it was the need -- this is what I said a couple of 01:22:00weeks ago about toxic shock syndrome. One of the principles that Dr. Bill Foege articulated was, sometimes in epidemiology, the blessing and the curse is that you find the first chapter and then you find the last chapter, but you don't know these intervening chapters. That occurred in toxic shock syndrome. It occurred in AIDS. We have this disease. We know it's appearing in these categories. It is clear -- you know, [Dr. Donald P.] Don Francis and [Dr. James W.] Jim Curran were pounding on the table in 1981 saying, look in the blood supply. We're going to find this in the blood supply. Eventually, it did come up, and the blood industry and the hemophiliacs were saying, "Show us. Show us those middle chapters. How do you know?"

We don't know, okay? This is all we've got. It's called epidemiology. The lab 01:23:00science and the practice is going to take forever. But based upon that, we started -- we needed -- the country was saying, what do we do? What makes sense? We started making recommendations in the MMWR, and I always loved this. We prided ourselves on saying, we at CDC are not a regulatory agency, even though we were, we are. If you look in the Code of Federal Regulation today, I think you've got seventeen different regulatory programs laying around, but you didn't think like a regulatory agency. You didn't think like the Food and Drug Administration [FDA] or the Center for Medicaid and Medicare Services. You weren't in the "drawing lines" business-- you were results-oriented. We needed 01:24:00to articulate, based on what we knew when we knew it, what we thought was the best practice. So we started putting those recommendations out in the MMWR guidelines. You can help me -- I'm trying to remember what the first one was. It might have been universal precautions. It might have been - school attendance came up pretty quick. It was all about --

CHAMBERLAND: Yes, I think the earliest one -- well, among the earliest -- were guidelines that CDC issued back in November of '82 directed at clinicians and laboratory workers, because there was a lot of concern about dealing with patients and biologic specimens. Then a landmark recommendation was in March of '83. This was prevention guidelines, which articulated basically avoiding sexual contact with high-risk individuals, but in terms of the blood supply, 01:25:00recommending that people at increased risk for infection not donate blood. Those were some early biggies.

MATTHEWS: That was part of that awful meeting that is encapsulated in the first chapter of And the Band Played On. It was what, January of 1983? Yes, what recommendations do we make to protect the blood supply. Again, that was going to be a tough lift for FDA to do that, because they're a regulatory agency. (There would be a) notice-and-comment period, (and they would) probably get sued. You'd be years away. A lot of people would be dead, but we would just come out with "These are our recommendations for what to do." We did it in the blood supply, we did it in school attendance, we did it in healthcare workers, we did it in 01:26:00general non-healthcare worker employment situations. On and on and on, and the trick was, we were not doing this as a technical regulation, okay?

We were being pressured by the realities of the situation to say something. I learned this trick over time, that nobody was going to challenge you. There was always the risk of-- wait a minute, you are making a rule under the Administrative Procedure Act that needs to go through notice-and-comment period and the ability to view the record and yada-yada-yada. We said, we're not doing a stinking rule here. These are just guidelines, okay? There's no enforcement. That was totally disingenuous, because we knew the plaintiff's bar was our 01:27:00enforcement tool. If you were a school system and you were not allowing Ryan White to attend school, you were going to get a hickey put on your head legally by some lawyers, citing our guidelines as the standard of care. We were establishing that standard and, again, that was the courageous thing that I alluded to before -- of CDC taking those stands. We didn't duck. We didn't say, that's an FDA issue, or that's something the Department of Education could do. We took the right stand with the data we had, which we bet was the right data. 01:28:00It generally was, and we were never really challenged.

It was a precedent in NIOSH [National Institute for Occupational Safety and Health], because NIOSH does regulatory work, and they're hand-in-glove with the Occupational Safety and Health Administration. There was a decision, a case that we used, where NIOSH put out some workplace guidelines and the industry raised hell about it and brought it to court. The ruling was -- it was a lower court ruling, but it was good law for us -- that no, they're not regulating this-- this is just putting together a recommendation. In the AIDS era, anybody that ran in defiance of a well-thought-out CDC recommendation about AIDS prevention was risking being made a fool of and getting a liability judgment against them. 01:29:00We knew that, but we just said, "Nobody here but us friendly public health people trying to help you out, so what can I say?"

CHAMBERLAND: Before we close, I want to circle back to Don Berreth. You mentioned Don at the very beginning. He served as CDC's Director of Public Affairs beginning in 1975, and it was a position he held for 18 years, until his untimely death in 1993. You mentioned that he was a big mentor to you. Sadly, we can't have Don tell his story. Maybe you can tell us a little bit about how did --this is the biggest story, and it's a story that never went away. It goes on 01:30:00to this day. What were his views on how CDC should be communicating with the media, to the public about AIDS?

MATTHEWS: It's so weary, I hear him chuckling right now. He's standing right over there giggling and slapping his hands together. He was stone-cold heart of the Midwest from South Dakota, not a presumptuous bone in his body. (He was) brilliant, had good common sense, and he surely had courage. The things he did, like we talked about it in the webcast we did on toxic shock, he was a big proponent of throwing the young EIS [Epidemic Intelligence Service] Officers 01:31:00right out into the media scrum. There were some losses that would occasionally occur, but he was really convinced that having a Jim Curran or a Harold Jaffe or a Mary Guinan or a Claire Broome articulating what they knew without guile, with clarity, without spin, transmitted credibility, and your message was better that way. If you had to clean up behind a rookie mistake, you cleaned up behind it. You never beat them up for it, you never hung them out to dry. That was one part, and for some reason he thought the epidemiologists tended to be better at 01:32:00that than any of the other subspecies around CDC. He did that, and he worked on training. All EIS Officers got training, and eventually [Dr.] Bruce [B.] Dan, who passed away, gave the same -- did that training. That was part of it, but I learned so much just hanging out with him at lunchtime in how he handled the media.

Another principle was, you've got to fill that vacuum. If you don't know, say you don't know, but if there's something you can say, go ahead and say it, even if it's only half a loaf. If you don't, "they're going to make it up." The experts that are criticizing you or the industry or the advocates will make 01:33:00their own storyline up if you don't fill the vacuum. Being proactive was a key part of it.

Underlying all of this is, you've got to have your science right. If your science is wrong, we're all dead -- the lawyers and the communications people. The thing I teach now to young lawyers is that it's so important for the communications office of an organization (the public relations office) and the legal office to be on the same page in a crisis management situation. If you don't, it's going to go off the rails one way or another, and there are an infinite number of examples of that. If you are the lead lawyer for an 01:34:00organization, be it governmental or private or whatever, and you haven't had lunch this month with your lead public affairs officer, you're not doing your job. You've got to have that relationship there, because when a crisis hits, you don't have a lot of time to be making friends and developing a rapport.

CHAMBERLAND: I remember, I think another one of his axioms -- I think he had a sign on his desk that said something to the effect of 'don't screw up on a slow news day.'

MATTHEWS: Oh, yes. That's gone away, though. He talked about the dog days in August. He always hated the month of August because the lead reporters were off on vacation. You had a second-level person there, and you could get all sorts of screwy stories going. In this environment, the 24/7 social media news cycle -- I 01:35:00don't know if he would say that today. It's just relentless. In this environment, can organizations tolerate a rookie getting out there and making a mistake? That was his view. and it developed a certain esprit and camaraderie that lasts a lifetime among those that were doing that.

CHAMBERLAND: What impact do you think AIDS had on CDC the agency? It's often said that this was a turning point. CDC became politicized. I'm just curious: what are your thoughts about the impact of AIDS on CDC as an entity?

MATTHEWS: I think to a certain extent it was always politicized. It was surely politicized the day that [Joseph A.] Joe Califano called up Dave Sencer and said, your services are no longer required. That went back. I think after AIDS, 01:36:00CDC no longer had that splendid isolation of not being located in Washington, DC. We became much more connected.

Certainly, the agency grew significantly during those years. That really led to the construction -- I don't think there's a single building left here on this Clifton Campus that was in existence when the early AIDS years were there. They're all replaced, but that's a good thing. Clearly, I think we did a good job. I think the legacy inside the organization (is that) we did persevere on 01:37:00that, at least domestically. We still carry the angst that in developing countries, AIDS is still the problem it was in 1985. We continue to work on that, so the relentlessness I don't think has gone away.

Clearly, the respect for the individual and the protection of the privacy was key, and we held that up. I think AIDS made us more politically savvy, because we had to survive. Again, I simply don't understand how it was just luck that Gene Matthews and Jim Curran and Harold Jaffe and all of us survived that. We 01:38:00had good fortune, and some of us did not survive that. Looking back, it gave us certainly confidence that we could do things.

I think in the response to the 9/11 -- that was the next really large event that occurred -- a lot of those who came of age during the AIDS culture wars were ready to deal with the challenges in 2001 and up to the current time, so it developed a whole other level. In other words, we were part of a generation that inherited the mantle --I said earlier -- from the giants, from those that 01:39:00conquered smallpox, and it was an overlap. We learned, and we polished the skill of what I call pattern recognition and seeing around corners.

One of the things I teach is, if you think about every presidential administration, they have somebody that has that uncanny ability politically to see around a corner. Carter had [W.] Hamilton [M.] Jordan. I'm trying to think of all of them. [Harvey L.] Lee Atwater for George H. W. Bush-- Karl [C.] Rove for George W. Bush -- Lee Atwater was with Herbert Bush, Bush '41. I can't name 01:40:00them all, but they were somebody that had that uncanny ability. What I observed occurring at CDC, certainly during those years, was that no individual -- I certainly couldn't see around a corner personally, but I was part of a team that was damn good at anticipating things before you could really see them. In a sense, it's part of epidemiology and pattern recognition, Malcolm Gladwell's concept of pattern recognition, to anticipate what can happen and get ready for it and be in the right place at the right time with the right tool to move. Certainly, during my era, it spread across to occupational health and 01:41:00environmental and a lot of other areas that were useful on that. CDC became much more proactive after a tough time -- after the swine flu affair and being a quiet little agency down in Atlanta, Georgia, that couldn't go to Washington that much. Now it's 24/7.

CHAMBERLAND: You founded during your time at CDC the Public Health Law program. Just tell us a little bit about that. It's obviously evolved into something that's --

MATTHEWS: Yes, that's really been an amazing thing. It's still going on. Beginning in the late '90s, some of us became aware -- [Dr. Richard A.] Rick Goodman was part of it, [Mr. Lawrence O.] Larry Gostin, [Dr. Anthony D.] Tony 01:42:00Moulton -- were starting to realize how devoid of basic knowledge public health people were about their legal underpinninga. Also part of that, I think, was the retreat of public health from political engagement that occurred in the 1970s and '80s. We started testing the idea of, "is there a demand for knowing more about public health law? How it is a tool in the practice of public health?" It's part of an interdisciplinary process. Before that, I was trained to be a technician, off to the side. That was the way the General Counsel operated. We 01:43:00didn't get involved in policy, but I sure -- I was impervious to supervision, I suppose-- did that and saw how important it (policy) was. Again, a lesson from Don Berreth was that if your public affairs office and your legal office aren't on the same page, you're in bad trouble when a crisis comes to town.

We held a couple of meetings in 1998 and 1999 and brought some people in here. We brought in pairs like the -- in other words, a lawyer and a seasoned leader -- from New York, Wilfredo Lopez and I'm trying to think of her name -- [Dr. Marcelle C.] Marcie Layton -- came in, and [Robert] Bob Eadie from Nashville and 01:44:00the Nashville Health Director who became the Deputy Director here -- I'm blanking on her name (Stephanie Bailey). Anyway, we brought people in and realized, yes, there's something for this, there's a need. [Dr. Jeffrey P.] Jeff Koplan by that time had taken over as CDC Director, and he said, "Yes, this is needed. When you are going to have your first conference?"

We gulped, and we were having a brainstorming session on September 11, 2001, in my conference room over in Building 16. We were having a meeting around the conference table with Rick Goodman and Tony Moulton and some of the usual suspects from within the Center about planning out the first public health law conference. We were going to focus it around chronic disease, because at the 01:45:00time, that was a hot thing. And my son called from the Hudson River and said, "Dad, turn on your TV. A plane just hit the World Trade Center." Out of that, it suddenly became a demand for people wanting to know what is public health police power function. We had anthrax in the mails and having to do all that stuff and emergency preparedness. All of a sudden, we shifted, and we built the early years of the Public Health Law program around preparedness.

It was an avalanche of money going out to state and locals so they could pay for their people to come here for a conference. We were hoping to have a hundred people come to the first Public Health Law conference in June of 2002, and 500 01:46:00people showed up. We realized we had just met the demand, and we had good support on that. It ran for a good period of time. When the fed's interest waned, about 2006-2007, then [Dr. James S.] Jim Marks, who in the early years was a big supporter of this in the CDC Chronic Disease Center-- he had gone to the Robert Wood Johnson Foundation, and he helped pick up the -- continued the momentum. The Robert Wood Johnson started a Public Health Law program. I'm still doing work for them as well, and the thing has just taken off. It's really rich, robust. We have a conference every other year.

The most rewarding thing about that was in seeing in the Public Health 01:47:00Accreditation Board (PHAB) Standards, the PHAB Standards for state and local health departments, there was a Domain 6 put in. This was done in 2010-2011 for legal authority. It was put into the mainstream. It's very reassuring to see that now all being considered a part of the public health toolkit, and that law is just not a technical skill like dealing with contracts or personnel or whatever. It's integral to the policy development and its implementation.Whenever you've got to shift the arc of public health interventions to pick up a new cohort that is in need, then generally you've got 01:48:00to change an appropriation or a policy or regulation or a law. You need to have an interdisciplinary team to do that, and that's where we are now. It's quite thrilling to see that.

CHAMBERLAND: There's a lot of interest in law students today in this area.

MATTHEWS: Yes, it's been a very interesting ride. Who knew?

CHAMBERLAND: Gene, we've certainly covered a lot of territory. I know there are more stories to be told. I'm just trying to think if there are any loose ends that we need to tie up, because you've covered such an array of topics.

MATTHEWS: It's very delightful. We touched on the Bergalis case back earlier and --

CHAMBERLAND: Why don't you expand a little bit on that, because we really didn't go into that.

MATTHEWS: Yes, this would have been 1989. I do this as a case study for students. It's a sensitive issue, but I don't mind talking about it here and for 01:49:00the museum. In 1989-1990, CDC was still getting pounded about the number of "no identified risk" cases. What this eventually led to was the discovery of a cluster of cases in South Florida, where a dentist had apparently transmitted AIDS to, I believe a total of six patients. The first one was a young 23-year-old woman named Kimberly [A.] Bergalis. The history behind that and how it played out I think haunts all of us to this day. I'm sometimes asked by my 01:50:00students, if you ever had one thing you could do over, what would it be, and to me, this was it.

The back story is that at any time in an epi [epidemiologic] investigation, you have reports coming in. You have them being processed, they're categorized, they fit your case criteria and you categorize them. But at any point, you have a certain number of NIRs, No Identified Risks. In the late 1980's, the AIDS scaremongers were saying, CDC is sitting on a pile of AIDS cases for which they don't know what the risk is. They're not telling us the truth-- they're not coming clean. That's partially correct, but what it was, was on any given day 01:51:00you've got new cases coming in and old cases being categorized, so it's -- there was this clump there. My understanding is [Dr.] Ruth [L.] Berkelman, who was at the time in charge of the surveillance, decided, enough, enough, we're going to reduce those NIRs down and try to get rid of as many as possible. In doing so, they ran across this young woman in South Florida who didn't really have any apparent risks. They went back and were interviewing and couldn't come up with anything. Without going into all the details -- and she and her family were somewhat suspicious of her dentist -- there were rumors in the community that her dentist, who had by then quit practice and gone out of business -- there 01:52:00were rumors that he was dying of AIDS. His name was [Dr.] David [J.] Acer. We did an investigation, and there were a lot of twists and turns in it, but at the end of the day, she really didn't have any other exposures. For a while, it was thought she wasn't being clear about her sexual history, but that was just a false rumor.

My understanding is that CDC went through some rather sophisticated state-of-the-art cutting-edge gene sequencing with Los Alamos Laboratory, I believe, but we used another outside lab for the purpose of eliminating the dentist as a potential risk factor for her. We tested David Acer's blood with 01:53:00this (sequencing technique) -- he was still alive, and we got his consent. We sequenced it. By then, Kimberly Bergalis was diagnosed with AIDS, and she consented to have her blood sequenced. Lo and behold -- again, the idea was to eliminate the causation --the genetic fingerprinting matched up. It was pretty clear, then, going back and looking at his progression of illness, which was much earlier than hers, and her visits to his dental practice, where she was having fairly straightforward dental procedures done, nothing too gruesome, but it looked like she got a strain of AIDS that matched David Acer's and that she 01:54:00had been exposed in his dental practice.

We had a tiger by the tail. It's like we're a little dog chasing the bus, and now the bus stops. What do we do? We were under a lot of pressure to get that out. How do we explain it? The backstory is that CDC had been saying for years there's no casual transmission, and we're not aware of a patient receiving AIDS from a healthcare worker. There had been plenty going the other direction, of healthcare workers being exposed, by blood-to-blood exposure from a patient, 01:55:00developing HIV infection, but not the other way. This was a big deal, and we're scrambling and we're scrambling to get it together. We had done a lot of work with Kimberly Bergalis. Nikki [M.] Economou, who was the public health advisor, had gone down and visited her on a number of occasions, worked closely with her and the family. It was a scary thing, so we're working.

We're in a shot-clock situation. We know this is true. Los Alamos, their lab, knows it. Their people know it. We've now got to communicate up our chain of command to the Department and let the White House Domestic Policy Council know, because we know this is going to be a big deal. We're worrying, we've got to get 01:56:00-- this is the Don Berreth principle of get your message out on your terms quickly, and don't let it leak out or you're doing damage control. We're working over how to articulate it and all of this. We're going to announce it in the MMWR, not identify obviously any of these people by name. It's just a dentist and a 23-year-old woman in South Florida.

This is along about the Tuesday before the MMWR is put to bed on Wednesday night, embargoed for Thursday, and it's publicly released on Friday. We've been through this many a time with all of our AIDS guidelines. We're sitting around Room 207, and Walt Dowdle, Dr. Dowdle, is presiding. Someone says -- we're all 01:57:00getting lined up who is going to be the spokesperson and who is briefing the Hill and who is briefing the medical associations and all that. Then somebody asked the question, "Does Kimberly Bergalis know about this yet?" There's kind of a long thunk in the air and "no," and it's a problem. It's an ethical problem, it's a confidentiality problem, a legal problem, a public relations problem. If we tell Kimberly "You are the woman in this MMWR," then we have also told her that her dentist -- she only had one dentist, David Acer -- has AIDS. We had never to that moment ever identified any person without their consent, 01:58:00and it would be a little late to go get consent if it was complicated. Yet, it didn't feel right. We queried the Florida Department of Health AIDS surveillance people, and they had a hissy: "You cannot tell her that because it will be violating our principle of confidentiality that we have to have here in South Florida," even though there was a community rumor that David Acer really did have AIDS. It was a tough situation--and the one I wish I had (to do) over.

We met the morning of the next day after agonizing over this. We went through and we got the reports, and Florida says, "No, don't do it, don't do it." We all felt this is not right. Walter Dowdle turned to me, and he said, "Gene, is there 01:59:00any legal requirement for CDC to tell Kimberly Bergalis that she's the index person in this case?" The one I wish I had (to do) over was -- I answered him truthfully, I answered him accurately -- there was no affirmative duty for CDC to be legally required to do that. If I had it -- I teach this with my students, and I say, if I had that one to do over, I would have said, this isn't a legal question. This is an ethical and an institutional credibility question. She's going to know it instantly, and it's just not the way that someone should be treated. We worked with her. Well, I didn't.

We all gulped and said "Okay." We had a lot of other things pressing us, so we 02:00:00rolled with the story in the MMWR. Kimberly Bergalis and her mom reported later that on Friday night, they're sitting there with their dinner in front of the TV. On comes the network news, and the lead story in the network is, "CDC identifies today that there is a 23-year-old woman in South Florida who apparently contracted AIDS from her dentist." They dropped their forks and said, "My God, they're talking about us." She then went on to become an iconic figure in the late '80s and 1990s. She lived another year, and she was the poster child 02:01:00for the criticism -- and her criticisms were valid -- of "AIDS exceptionalism," that the CDC practice of saying there's been no transmission was wrong, and they never even told us that.

This played into the politics all over again of casual transmission and dental transmission. There's a whole other story I won't go into, about how we dealt with the policy intervention of exposure-prone invasive procedures and that dreary story. In the end, she said -- she testified up on the Hill, and there's searing videotape of her being rolled in a year later in a wheelchair, very thin 02:02:00and very stricken and with barely a voice, to say to the Congress, "These AIDS policies have killed me." And it was hard. It was hard. I wish I had that one back, and there are others around here who feel likewise, but, you know, we played the cards we had.

I'll actually say more about this, because a year ago, two years ago -- I've been teaching this for a lot of years, and I think some of my other colleagues have. We had the idea of, we're coming up on the twenty-fifth anniversary of this-- why don't we do a symposium. I'm at UNC, where [Dr. William L.] Bill Roper is also the head of the medical school and health system. He and I talked 02:03:00a little, and I talked to the communications school about (how) we could really do a symposium. I reached out to folks here, Harold Jaffe and Ruth Berkelman, and (asked them) would you be interested and yes. We got our thoughts together on it, and it really would be interesting. Then Bill Roper actually said to me, "One big thing here: let us check with the -- make sure this doesn't violate the family's feelings on this." The Bergalis family. I called back here, and Harold Jaffe or someone checked around. We found that there was this small report, an ad in 2012 in the South Florida -- Stuart, Florida, I believe it was -- in the local paper, posted by an unnamed researcher in California who was interested in 02:04:00following up on any of the patients of David Acer who had been exposed then. The way the story had played out over that year (1990) is that we found an additional five other cases of David Acer's that also had AIDS. Their strains matched, and it was apparent transmission. We thought there were going to be more and more clusters like this forever, and it turned out to be one of a kind. There was never another one quite like that, and to this day, we don't understand.

So here comes an investigator of some unknown qualifications posting a little ad in the local newspaper in 2012, looking to contact any of David Acer's patients. 02:05:00All of a sudden, it popped back up, and it became a social media issue. The researcher disappeared-- he went away. But in the course of it, the trolls started saying the same thing to Kimberly Bergalis' parents from years ago: that she deserved it and she was lying and all these awful things which she had endured during that year between the time we announced this and the time she died. There was a quote in a video from the father, and clearly, they were still stricken by it. Having seen that I just said, "I made a mistake." It wasn't a legal one, but we all felt like we did this wrong. If that family has earned 02:06:00anything, they've earned the right to be left alone. I could think of no way of -- even if I asked the family could we have their consent to do it -- they're still going to get harassed in this environment of -- this would have been 2016-- that would have been the twenty-fifth anniversary. They would not be left alone. You just have to -- we let it go. We've never done it, so I'm --I need to tell this story, I feel like. I've never written it up. We get asked, why don't you write it up or talk to a publication or whatever. I feel like this was one I wish I had that one back on it. All you can do is learn from it. At least I didn't compound the mistake by trying to hold a public symposium last year, 02:07:00which would have inevitably drawn out the trolls again and made life unpleasant for that family who have been through a lot.

CHAMBERLAND: I often ask people in the Oral History Project what impact the epidemic -- their work on a historic epidemic had on them, both professionally and personally. It certainly sounds like this was an event that --

MATTHEWS: Yes, that was the defining event for a lot of us -- the young kids that came in about my era and had to learn on the fly through those very challenging years. They were challenging scientifically and policy and 02:08:00communications and legal and politically. They defined us, in a way. I learned from that, and I've tried to pass it on. I think if you ask any of the cohorts that worked on it, they would say that was. I suppose the ones here now would be defined by 9/11 and the response dealing with the last 16 years since then as well, but clearly, yes. I learned to take risks.

I teach a leadership class -- Public Health Law and Leadership -- and I say, part of leadership is knowing when to break the rules. You can't do it all the time, but you've got to push envelopes and you've got to have the courage and 02:09:00you've got to have good instincts. You've got to recognize the patterns and do that. That was part of my role -- looking back on the whole thing here at CDC -- is I became part of the institutional memory. Where I sat, I could learn a lesson in hospital infections, say something that [Dr. James M.] Jim Hughes and I worked on back in the day. Then when that same pattern would occur in environmental health, I could say, "Wait a minute, we learned this one the hard way. You don't need to learn it the hard way again." Part of what this office served was as the interstitial connective tissue of an organization at the time. Yes, it was a thrill. It was a professional thrill to do that.

CHAMBERLAND: It was interesting times. I think our conversations in the last 02:10:00couple of hours have really illuminated lots of challenges, but as you said, what kept everybody sane was keeping an eye on science and being surrounded by good people, being able to recognize the patterns and think ahead strategically.

MATTHEWS: Yes, doing the right thing.

CHAMBERLAND: Doing the right thing.

MATTHEWS: I didn't do the right thing that one time, but you can't get them all right.

CHAMBERLAND: I'm sure it's a lesson that your students --

MATTHEWS: Oh, yes.

CHAMBERLAND: It's going to stick with them.

MATTHEWS: I teach it as a capstone to the course. The point I make is that any fool can talk about their successes, but if you're teaching leadership, you 02:11:00learn more from your mistakes than your successes. When I tell that story, my students want to pat me on the head and say, "Well, you didn't know, and what difference would it have made" and all of that. I say, "You don't understand. The point here is you pass along what you've learned. What you need to do when you start mentoring is not teach what you were so damn lucky to have gotten right, but to teach your mistakes and what did you learn from that and pass that on." I think that's what's so helpful about this series. We didn't do everything right then, but we generally did the right thing on dealing with AIDS at some 02:12:00critical times and making some stands and living to tell the tale.

CHAMBERLAND: Gene, I thank you so much for taking the time to spend with us, passing along your experiences and what you've learned. I wish you all the best.

MATTHEWS: Thank you very much. This was great.

CHAMBERLAND: Thank you.

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