E. Thomas Starcher

CHAMBERLAND: This is Dr. Mary Chamberland, and I am here with Mr. E. Thomas Starcher at the Centers for Disease Control and Prevention [CDC] in Atlanta, Georgia. Today is Wednesday, September 27, 2017. I'm interviewing Mr. Starcher as part of the oral history project, The Early Years of AIDS: CDC's Response to a Historic Epidemic. Tom, welcome to the project. Do I have your permission to interview you and to record this interview?

STARCHER: You do.'

CHAMBERLAND: Tom, your career as a CDC Public Health Advisor [PHA) spanned some 30 years, beginning in 1967. You were a senior Public Health Advisor in CDC's Division of Sexually Transmitted Disease Services when the first Morbidity and Mortality Weekly Report [MMWR] on Pneumocystis carinii pneumonia among homosexual men was published in June of 1981. A little less than two years later, you took a position in the expanding AIDS [acquired immunodeficiency syndrome] program and continued to work on HIV/AIDS in various capacities for eight years. After your retirement in 2000, you've worked as a consultant for many of CDC's programs, including the HIV/AIDS program.

Before we delve into the details of all of this, let's talk a little bit about your background. Can you tell us where you grew up and about your early family life?

STARCHER: I was born in Hawaii during World War II. My sister was born in Hawaii at the same time. My mom was born there back in the 1920s, and my dad was a police officer there for the Honolulu Police Department during that time. My mom used to relate stories of taking my sister and I to bomb shelters in full body bags--gas bags, because you couldn't fit a gas mask on a baby--because there were concerns about gas warfare. My dad eventually took a position at the University of Maryland after finishing his master's degree at the University of Arkansas. He became a professor there, and I grew up in College Park, Maryland, up through my high school years. After graduation from high school, I attended a few universities, including where I graduated from, which 00:02:00was the University of Arizona. I had a major in zoology and a minor in chemistry.

CHAMBERLAND: After college with this major in zoology, what were you aiming for career-wise?

STARCHER: I'd actually been interested in becoming a veterinarian. I had been accepted to the University of Missouri in Columbia to their vet school. I needed one course in botany, which I didn't have. But I found out that my wife was with child, and so I needed to get a job. Out of the blue, I received a letter from CDC, asking me to come for an interview. I had not applied for a position. I went on the University of Arizona campus, met with Donald R. Malberg, who was a recruiter for CDC, and they offered me a position. They offered me two slots. One was in East St. Louis [Missouri] and one was in Baltimore. As my wife and I had grown up in Maryland, I chose the Baltimore slot.

CHAMBERLAND: Oh, gosh, to this day you have no idea how this unsolicited invitation came your way.

STARCHER: No. We were friends with a local CDCer in Tucson who was working in venereal disease control. While he's never admitted it, I often suspected that he threw my name in the hopper for me to be interviewed.

CHAMBERLAND: You were hired to work as a Public Health Advisor [PHA], your first assignment being in Maryland. It would helpful maybe if you could explain what a Public Health Advisor is and how they fit into the overall scheme of CDCs professional staff.

STARCHER: In 1948, the United States Public Health Service [USPHS], their Venereal Disease Control Division, which was not at that time a part of CDC, had 00:04:00come up with the idea about "new hires" for their programs. These were to be college graduates. They would come in at the entry level, and their foci would be field work and contact epidemiology. Over time those people would get exposed to various levels of public health work, and many went on to other programs. Probably the biggest success story was [William C.] Bill Watson, who came in as a Public Health Advisor and became Deputy Director for CDC.

CHAMBERLAND: You started in Baltimore, but I believe over the next ten years or so moved around quite a bit working with venereal disease programs. Was that the norm, and why? Why were PHA's moved around?

STARCHER: A lot of them were moved around based upon their experience and where they could offer more help in a particular area. For example, when I was in 00:05:00Baltimore, the first year as an employee you're required to write four narratives, quarterly reports. One of those I did was on the Epidemic Intelligence Service [EIS). I was fascinated with the concept that Dr. [Alexander D.] Alex Langmuir had put together. I really wanted to become an EIS Officer, but I didn't have the qualifications. Anyway, that was one of my narratives. Also, while I was in Baltimore, I was involved in a pilot study looking at gonorrhea culture media for women. We didn't have at the time a good way of diagnosing gonorrhea in women. You couldn't do just the smear like you could in men.

Anyway, after three years there working in Baltimore, I was transferred to Altoona, Pennsylvania. Similar to what I thought was fascinating about EIS, they had me working across the board. I was handling 16 counties. I was handling it for immunization programs, for tuberculosis programs, and for STD [sexually transmitted disease] programs. I really liked the concept, because when you went into a doctors office, you could talk to the doctor about all of the 00:06:00patients-- his tuberculosis [TB) patients, STD patients, and about immunization levels, as opposed to having three different people coming through the door and taking up the doctors time. I enjoyed that-- it was a great experience.

But in April of 1972, Congress appropriated $24 million to set up a national gonorrhea screening program for women. So, they sent me, because of my background in the pilot project in Baltimore, to Springfield, Illinois, where I was the Deputy Director for the STD program and helped in setting up statewide gonorrhea culturing program for women. From there, a position came open in South Dakota for the Director of the STD Control Program. I applied for that and was 00:07:00accepted and did three years of work there. I was involved in doing some research looking at gonorrhea culture media and how well it transported in subzero temperatures, et cetera.

CHAMBERLAND: It was cold there.

STARCHER: Yes, very cold. I wrote narratives on that, and I got a call from CDC from the Operations Research Branch in Atlanta. They wanted me to come work in that branch on some research projects. I accepted that position and came to Atlanta in 1978.

CHAMBERLAND: I'm impressed that there was a real research component to a lot of the work that you were doing. I think people sometimes think of people 00:08:00working in venereal disease programs as just contact tracing, going out finding people, interviewing people. But there was a real research component to the work that you did.

STARCHER: There was, and I enjoyed that aspect of it, and I enjoyed working in the Operations Research Branch. I worked on a large gonorrhea research project out of Des Moines, Iowa, and I was fascinated with the research. It probably goes back to my interest in veterinary medicine and doing more than just the contact tracing, which is extremely important. It gave me exposure to lots of different levels of public health, as a lot of the people that are working as Public Health Advisors today get. The Public Health Advisor today, the Public Health Associate Program, is basically the iteration of that. These folks are coming in as college graduates, but they're not coming through just the STD program. They're coming in through all different kinds of programs.

CHAMBERLAND: Before we talk about your work experience in Atlanta, I just wanted to pick up on something that you mentioned: that you would be out visiting doctors offices and talking with them about cases of not just STDs, but TB and immunization issues. How receptive were doctors to having people from the health department show up on their doorstep? Was this just a very accepted way of doing business?

STARCHER: I think there are always challenges to taking up a doctors time. Its a matter of being able to talk about important issues. Of course, STDs were reportable, and tuberculosis is reportable, so when you're dealing with those kinds of things, the doctor is under some obligation to be sure that they're reporting them. You're actually following up on reported cases, in most instances.

CHAMBERLAND: I see, and making sure that they've had adequate treatment and follow up that they need.

STARCHER: Adequate treatment and follow up. I was involved in taking TB 00:10:00Today at CDC to gain some understanding of tuberculosis, a very complex disease. Fascinating disease.

CHAMBERLAND: You said it was May 1978 when you arrived in Atlanta for your first headquarters job, and you were there for some five years. I think this coincided with a point in time when there was a real effort to implement changes on a national level in STD control methodologies. What was that all about, and why the need for change?

STARCHER: Initially, when we started in Baltimore, in a lot of the follow up the focus in STDs was largely on syphilis. It expanded to -- because we realized gonorrhea really caused a lot of problems, especially for women -- it involved also looking at chlamydia and other STDs. There was an expansion in terms of 00:11:00just looking at STDs from a different vantage point. The gonorrhea project in Des Moines was a really important project. Based upon our findings there, we changed how contact tracing is done nationally. We found out, for example, that rather than just interviewing males who are symptomatic for a 30-day period to try and find out about their sexual partners, that if you cut it back to 14 days, cut the work level in half, you would find over 90% of infected contacts. You wouldn't have to go through the extensive work for little reward for the extra two weeks. So a lot came from that project. We got published on it. It was a very rewarding experience.

CHAMBERLAND: During this time when you were in CDC's STD Division, did you 00:12:00start to hear, in the course of doing your work, did you start to hear anything about unusual occurrence of diseases in homosexual men, prior to the MMWR publication in June of 1981? Was there stuff"rumors going on, either with patients that you were [seeing] or physicians? I was just curious if there was kind of a drumbeat.

STARCHER: I don't remember anything like that at the time. I was working for [Dr. James W.] Jim Curran at the time, who was the Chief of the Operations Research Branch in the old Venereal Disease Control Program in the Center for Prevention Services. I certainly knew when he got tapped in June of 1981 to start looking into the report and the findings from that MMWR about Pneumocystis 00:13:00carinii pneumonia showing up in otherwise healthy gay men, previously healthy gay men. I knew about it at the time. I was not aware of anything prior to that.

CHAMBERLAND: Interesting. Jim gets tapped to head up this new, what ultimately was called, Task Force. I think several other STD colleagues were also brought along to work on this Task Force. It was an informal thing.

STARCHER: Yes. I remember because I really enjoyed working for Jim. Just an absolutely great guy. I certainly remember when he ended up leaving, and there were a number of people in the Venereal Disease Control Program who went with him at the time" [Dr.] Harold Jaffe being one, [Dr. William] Bill Darrow being one, [Dr.] Mary Guinan being one. There were just a number of people who went with him at the time. I knew what was going on at that time because I got a new boss.

CHAMBERLAND: That sounds like a big chunk of people leaving.

STARCHER: It was. And key people, very key people.

CHAMBERLAND: So that's '81, and almost two years later, in April of 1983, you moved over to work in CDC's National Center for Infectious Diseases [CID] to work on the AIDS program. I can guess how that came about, but why don't you tell us.

STARCHER: I got an invitation from Jim Curran to come over to help set up national surveillance for AIDS case reporting. Dr. [James] Jim Allen, who was coming from the Hospital Infections Program, was going to be heading it up, and Jim wanted me to come over to see if I could help Dr. Allen. I was a little hesitant at the time because most of the Public Health Advisors at CDC were in 00:15:00the Center for Prevention Services. There were very few in the Center for Infectious Diseases. I was very concerned how well they would be received in CID. I contacted [Franklin R.] Frank Miller, who was a good friend who worked in the STD program with me -- we actually used to play chess over the lunch hour together -- and I think he was the first EEO [Equal Employment Opportunity] Officer for CDC. He was in CID, and I contacted him and asked what his thoughts were about how receptive CID would be to Public Health Advisors. He told me that he thought I would be well received, and in retrospect, after I accepted Dr. Curran's invitation, it was a great move. It was an absolutely great move. I found Dr. [Walter R.] Dowdle, the Director for CID, and Dr. John [V.] Bennett, the Deputy Director for CID, to be two of the finest, most professional, most 00:16:00competent individuals that I had a chance to work with during my 30-plus year career. Both were very supportive of public health work, very supportive of Public Health Advisors. It was a great move, and it was good advice by Frank.

CHAMBERLAND: I do want to spend now some time talking with you about AIDS case surveillance because that was certainly your focus for the next five years or so. In fact, you led the AIDS Surveillance Branch for a period of time. Why don't we start from your arrival? You arrived in April 1983, so not quite two years after those first cases had been written up in the MMWR. Can you tell us when you arrived on the scene, what was the status of AIDS case surveillance and reporting at the time on a national level?

STARCHER: At the time I arrived in April of '83, there had been just over a 00:17:00thousand cases reported to CDC. One of the difficulties was we didn't know what actually caused AIDS at the time, so we went on a clinical definition that had been largely developed by Dr. Richard Selik. Cases had to conform to that clinical definition to be accepted as an AIDS case. One of the big problems that grew out of the way that CDC does business was, a lot of the reports were coming directly to CDC, and they were bypassing health departments. CDC has traditionally relied on health departments as being the point where cases get reported to, and then from those health departments to CDC. One of the first things we did in setting up a national program is, we hired a nosologist who was already at CDC-- her name was Mary Cathrine Rogers. Her chore was to review the 00:18:00cases to be sure that they met the strict clinical definition, so they could be counted as a case. Many of the reports that we received did not meet that clinical definition, so we're not counted as AIDS cases.

Then we set up an announcement for cooperative agreements for many major city health departments. It included New York, Baltimore, Washington, D.C., Chicago, Los Angeles, and San Francisco. We made awards to them for setting up surveillance. The goal was to have cases reported by doctors in clinics through those health departments on to CDC. We got back into the pattern of using the health departments out there as the true partners that they are for CDC. It was interesting. We had one application that came in that -- I will not mention the 00:19:00name of it -- but the application came in and said that they were going to identify these individuals and then follow them to see where they ent and with whom they met.

CHAMBERLAND: Literally? Like stalking them?

STARCHER: Yes. We sent the application back. It was an important -- a large city, urban area -- we sent it back and asked them to resubmit it more along the lines of traditional CDC-type surveillance, which they did, and they became a very important partner.

CHAMBERLAND: I know, having myself been posted in New York City as an EIS Officer, '82 to '84, New York City had been the recipient of the first CDC cooperative agreement in, I think it was in January of '83, so right before you came. It was really a pilot to" at that time, most cases were being hospitalized, and we used a hospital-based system of surveillance, which would 00:20:00be pretty good -- and we actually did demonstrate -- was very good at capturing cases, because without treatment and a test, most people ended up in a hospital, sadly. I was curious about a couple of things. Do you remember how much money you had to distribute, because the cooperative agreement is the funding mechanism to get the money from headquarters out to these health departments? I am just curious how much money was"

STARCHER: I do not remember.

CHAMBERLAND: I can't imagine it was a lot.

STARCHER: No, we didn't have a lot of money, and we were doing it sequentially. We started out with some urban areas, and then we expanded over time where we got to state health departments, other urban areas. But I don't remember how much money was available.

CHAMBERLAND: Then your comment, or your story, about how one of your health department applicants proposed to go about doing surveillance, I think raises 00:21:00the question of, at the start, had CDC developed, maybe with the help of health departments, agreed-on procedures about how to do surveillance? Or certainly suggested methods to use in identifying and getting cases reported?

STARCHER: We certainly used information feedback from the health departments in developing the policies and procedures for doing active case surveillance, and they were instrumental in being part of that. We came up with guidelines on how to do active surveillance. We would continue to refine them over time, as we would find new things that would be helpful in identifying cases. We developed them, and that was part of what we did as the surveillance section to help guide them. Also, we developed guidelines for them in doing their applications for 00:22:00cooperative agreements. It gave them some insight as to the kinds of things we were looking for.

CHAMBERLAND: It's probably good for us to distinguish between the two traditional types of surveillance, active versus passive. You've mentioned that health departments were being encouraged to implement active surveillance.

STARCHER: Yes, where they were actually going out and looking for cases, beating the bushes, reviewing death certificates, doing all kinds of things, looking at laboratory reports, hospital-based reporting, et cetera, to try and find those cases. Up until April of '83, those were largely passive surveillance. Doctors and clinics would find cases, and they would voluntarily report them to CDC, et cetera. But with the active surveillance, we were actually paying them to beat the bushes to find the cases.

CHAMBERLAND: Yes, because just dating back to your experiences in various 00:23:00state-based programs as a Public Health Advisor, you knew very well that reporting fatigue is a real phenomenon of doctors, nurses, and hospitals. People are busy, and the idea of filling out a case report form and then submitting that to a health department, and oftentimes the health department coming back and asking you a few questions, that's time-consuming.

STARCHER: Yes. We were actually, through the cooperative agreement, providing them funding to set up active surveillance. They would hire staff to go out and beat the bushes and submit case report forms, again, through the health departments on to CDC.

CHAMBERLAND: How did health departments initially transmit case reports to CDC? Were these hard copies of case report forms that were mailed to CDC?

STARCHER: They were hard copy report forms, and they included a lot of personal 00:24:00identifiers: patient names, patient addresses, patient phone numbers. A lot of personal identifier information. Shortly after we got started with the active surveillance program, we met with Dr. David [J.] Sencer, former CDC Director, and at the time he was Commissioner of Health for New York City. He suggested strongly that we look at what was called a Soundex system, an alphanumeric algorithm that took the patients surname, the first initial of the surname, followed by three numbers that were based upon the consonants in the surname that got a numerical value. That was a unique identifier for the individual. Coupled with the patient's date of birth, it was a very unique identifier. While each Soundex can represent many different people, the Soundex itself, only one person will have one Soundex code for them. We switched over to 00:25:00the Soundex system based upon his recommendation and our finding out that it would really work. It would allow us to be able to communicate back with reporting sources because we had that information. We didn't need the patient's name, didn't need the address, and didn't need the personal identifiers.

In fact, we began converting all the previously reported cases to Soundex code, and we began the process of deleting all the personal identifiers. [Mr. Thomas] Tom Leonard, who was one of the Public Health Advisors working there, was given the task of taking a razor blade and cutting out all of the personal identifiers, which he did. It was extremely valuable. Confidentiality was the name of the game in terms of continuing to get reports. If there had been any breaches of confidentiality, it would have been very, very hard on us for us to 00:26:00be able to continue to do active surveillance. We had set up a lot of guidelines around confidentiality and how we handle case reports -- locked file cabinets, policy and procedures, who could have access to the files, et cetera.

CHAMBERLAND: These were recommendations or policies and procedures that were implemented in Atlanta but were also part of the guidance that you would send out to health departments?

STARCHER: Absolutely, absolutely, because again, if a health department, if there were breaches of confidentiality in the field, it would hurt their ability to do active surveillance.

CHAMBERLAND: Because at this point in time, as you say, there was a lot of concern about confidentiality in affected communities. Because not only were personal identifiers being collected but some of the behavioral risk information or risk factors, if you will -- that was an important part of the case report form -- what were the risk exposures for individual cases, the men 00:27:00having sex with men or intravenous drug use. These were illegal activities, so people were very vocal, as I recall.

STARCHER: They were, and I think justifiably so. I mean, we got inquiries from attorneys. We got one inquiry that went to Dr. [William H.] Foege, the Director of CDC, where one congressman was asking for the names of AIDS patients, which of course, the congressman never got. We were very concerned about whether or not lawsuits would be filed to get access to the information, et cetera. In addition to what we had done around the confidentiality guidelines, Dr. Foege was very supportive of a request to use the 308d Assurance of Confidentiality of the Public Health Service Act, which was the highest statutory protection available to protect those data. We applied for and got that Assurance, which 00:28:00made us feel good about not being able to or have to turn over that information for whatever reason.

CHAMBERLAND: Gosh. I mean, a congressman requesting a case list"

STARCHER: Yes.

CHAMBERLAND: "for whatever reason. Was it unusual to get an Assurance of Confidentiality?

STARCHER: It was not given out a lot, and it was what we were advised would offer us the highest statutory protection available. We applied for it, and Dr. Foege was very supportive of it. We were able to get it, and it afforded us great protection for our case reports.

CHAMBERLAND: Was that something you had to work with the CDC attorneys with on?

STARCHER: I did work with the CDC attorneys on it, yes. They were great. Just absolutely great. [Eugene W.] Gene Matthews and Verla [S.] Neslund were extremely supportive of what we were doing with the AIDS surveillance program, and AIDS in general.

CHAMBERLAND: Obviously you must have had contact with Dr. Foege, the Director of CDC, I mean, it was at that level that"

STARCHER: I actually got to meet with Dr. Foege, which was a real pleasure. Hes just one great public health person.

CHAMBERLAND: That was obviously an important, a really important step in providing, as you say, some reassurance to affected individuals, how seriously the agency took, and instructed health departments to take confidentiality, because health departments, of course, were collecting names locally.

STARCHER: Yes.

CHAMBERLAND: Which was important for them to have, as treatments and things like that became available. Ultimately, you've got these cooperative agreements out to what, ultimately all 50 states, big cities?

STARCHER: Yes, and territories.

CHAMBERLAND: That's a big deal. Did CDC headquarters try and assess how well programs were doing in adhering to the procedures? Not just about confidentiality, but about how surveillance was undertaken? Were there any sorts of evaluations or assessments made?

STARCHER: There were, and I'll just back up for one minute. One of the things that we were apprised of early on was that the Government Accounting Office was sending an auditor to come take a look at what we were doing with AIDS case reporting and the AIDS program in general. It was at that time that [Thomas A.] Tom Leonard had just finished deleting all the personal identifiers, because we were afraid we were going to be asked to showcase reports to the auditor. The auditor showed up and came into my office and shut the door and sat 00:31:00down in front of my desk, and he said, Your name has come up on the floor of Congress, and you have been accused of hiding AIDS cases.

CHAMBERLAND: You, personally, Tom Starcher?

STARCHER: Yes. I was certainly taken aback and asked what was the genesis of that? We had been putting out weekly surveillance data sheets that listed all of our case tallies, broke cases down in general by risk factors, by age, by gender, by type of disease, et cetera, and we had been putting those out for some time. It turns out that the focus that he had was that we had a footnote that listed cases that had been reported internationally, and we didn't 00:32:00count those cases as part of our tally. Part of the reason we didn't count them was we couldn't be sure that they met the strict case definition. Often, we did not have a way to get back to those international reporting sources, et cetera. So we tallied them as just a footnote, and the question had come up why those cases weren't being counted in our overall case count. Once we resolved that, I could breathe a little easier.

CHAMBERLAND: You weren't hauled off to federal prison.

STARCHER: No. One of the things that I did as a surveillance section chief, was I would frequently talk to other people about doing surveillance. One young man was from the Uganda Ministry of Health that was visiting Atlanta, and we sat down to talk. I had never had the opportunity to work in Africa, so I didn't have an appreciation for his healthcare system and what it involved. 00:33:00I tried to take our surveillance system and distill it down to what I thought would be the simplest steps that he might employ. For example, I asked him if they took a look at hospital cases, did they come from one particular area of the country, particular village or whatever, to try and get an assessment of whether more cases were occurring in one area or the other. The young man said to me after I finished, But we don't have pencils and paper. It just floored me, but it also bolstered my feelings about why maybe not accepting international cases as part of our case count was probably pretty valid.

CHAMBERLAND: Good idea.

STARCHER: When we started beefing up with all of these health departments, we brought in other Public Health Advisors. We brought in [Deborah A.] Debbie Deppe from the VD [venereal disease] Control Program in North Carolina, brought in 00:34:00[Jeffrey] Jeff Efird from the Louisiana VD Control Program and these people assisted us in going out to states and cooperative agreement recipients and reviewing what they were doing in surveillance. In fact, we assigned Debbie to New York City for several weeks to assist them with their surveillance efforts.

We also formed a team, basically, it was formed by Dr. Curran, that a team of folks from the AIDS program would do site visits. It included somebody from surveillance, Jeff or Debbie or me, one of the doctors, an actual physician, and somebody from education to talk about community education and patient identification. We would go out and do site visits and then meet with the staff in the cooperative agreement areas to go over what they were doing, to answer 00:35:00questions, to give them guidance, make suggestions, get feedback from them on what we could be doing better, et cetera. So, it was a two-way street, and I think it worked out very well.

In terms of the evaluation, about 1985, we did an evaluation of case reporting, the completeness of case reporting, and we looked at four major metropolitan areas: New York, Washington, D.C., Boston, and Chicago. Those four areas at the time had reported 38% of all of our cases. We set up a protocol and used a Chandra Sekhar Deming mathematical formula, which is basically a capture-recapture system, and we used death certificates to compare against the reported cases in those areas. Dr. Ann [M.] Hardy, who was an EIS Officer in the Surveillance and Evaluation Branch oversaw the project, and the results showed 00:36:00that we were getting 89% of all AIDS cases reported nationally in those four areas. The range was from 83% to 100% for the four areas, which was pretty remarkable, given that if you look at other reportable diseases none of them really came very close to an 89%. I think tuberculosis was somewhere around 63%, hepatitis a little bit lower in that area, salmonellosis a little lower. So we felt good about that. Dr. Hardy reported those findings at the International AIDS Conference in Paris in 1986.

CHAMBERLAND: I know you were very instrumental in writing the protocol for that study. I just want to clarify-- to make this a valid method, if you will, of evaluating the existing case report surveillance system in these cities, they 00:37:00could not have been using death certificates as a way to find cases. Is that correct?

STARCHER: During the time period that we were doing the project, they could not use those death certificates. It was done after the fact, after the three-month period in which we were assessing case reports.

CHAMBERLAND: Right. So, it was an alternative method to check on completeness.

STARCHER: Yes. I had the opportunity to run the protocol by [Dr. Stephen B.] Steve Thacker, Dr. Steve Thacker who was the Director for the Epidemiology Program Office. He reviewed the protocol and basically blessed it. So we felt we were on solid ground with the protocol and doing that.

CHAMBERLAND: Steve was certainly considered a surveillance guru at CDC.

STARCHER: He was. He was.

CHAMBERLAND: Absolutely. Your comment about the remarkable level of completeness 00:38:00compared to other diseases, I think probably holds to this day, but in fairness, I think -- like your comment on this -- there was an awful lot of money being poured into AIDS surveillance at the time and continues to this day.

STARCHER: Absolutely.

CHAMBERLAND: Because most of these other diseases they were relying on passive methods.

STARCHER: Some do, and some have active programs--the STD program and I think tuberculosis was active. Because [when] I was in Pennsylvania working on tuberculosis, I had two register clerks, and we were actively following up and visiting doctors who saw anthracosilicotics and TB patients and whatever to get that information. But you're absolutely right: The Public Health Service is so dependent upon the funding.

CHAMBERLAND: It is, it is. I want to get a little bit more information on a 00:39:00comment that you made earlier. You were talking about the generation of these -- they were initially weekly, and I think they then became monthly -- reports of AIDS statistics. When you first arrived, as you pointed out, you're dealing with hard copies of case report forms that are being mailed in by health departments. Mary Cathrine Noa [Rogers], the nosologist, is carefully reviewing them, and I know Richard Selik also had a big role in looking over case report forms to determine if these cases are complete. There are oftentimes many questions, having to go back to the health department to clarify if indeed certain criteria had been met. And then you generate a weekly report. Every week, this is the latest. This is largely pre-computer. How are you generating 00:40:00these weekly reports?

STARCHER: Actually Dr. [W.] Meade Morgan, who was the Director for the Statistics and Data Management Branch for Jim Curran's program was instrumental in just getting everything working in terms of the computers. He also was very instrumental in getting out a software program on Soundex conversions to all of the health departments, so that they could just plug in a name and it would automatically kick out the Soundex, and they didn't have to figure out all of the number combinations for the consonants. He was absolutely brilliant, and he was the one that fast-tracked our getting these reports together on a weekly basis. The reports generated tremendous numbers of questions. We would get calls from health departments, from the public, from newspapers, from the media, from attorneys, from everybody under the sun each 00:41:00week, asking for those data. They followed them as religiously as we did.

CHAMBERLAND: But this is pre-Internet. I mean, you're not posting them online. How are they being distributed?

STARCHER: We were sending out the reports--

CHAMBERLAND: "in the mail, in the post?

STARCHER: In the mail, yes, and it was available for people calling in because they would call in. I mean, every week I was getting a call from Randy Shilts from the San Francisco Chronicle, who, of course, went on to write And the Band Played On, about the early days of the AIDS epidemic. He would religiously call weekly, asking for the latest numbers, asking for a breakdown for risk factors, et cetera. We fielded a tremendous number of calls at that time.

CHAMBERLAND: Now, in your time on surveillance, were you able to witness the transition to electronic reporting, or did that happen after you left?

STARCHER: I think it largely happened after I left.

CHAMBERLAND: Okay. Okay. Another innovation, again, as you're saying, 00:42:00[with] this tremendous interest in access to the data, ultimately CDC established, with Meade Morgans guidance and leadership, what was called the public use dataset. There was such a demand for the data that a subset of the actual raw data, I believe, was loaded up and made available.

STARCHER: It was made available, and it was constructed in such a way that there were no small-cell data items because in small cells there's a possibility that you could actually identify an individual. If you knew an individuals race, for example, who may be gay and is also a hemophiliac in a state where they may have only one individual of that race whos a hemophiliac, they would say, Well, I didn't know that so-and-so was gay. We were very careful about small-cell data and the release of that information. It 00:43:00really did generate a tremendous amount of interest. Dr. Alex Langmuir, who was the founder of the EIS Program, actually came down from Buzzards Bay, Massachusetts, from his retirement home. I got to meet him, and he wanted to talk about AIDS case surveillance. At the time, we were doubling AIDS cases every six months, and he was very interested in the whole trends. He was one of my public health heroes, and I actually got to meet him, even though I was never an EIS Officer.

CHAMBERLAND: But should have been. But should have been. [laughing]

STARCHER: Thanks.

CHAMBERLAND: Exciting times. Also, another aspect that you alluded to was staffing. When you first came over, Jim Allen was head of the Surveillance Branch, it was probably a branch then, and you and Mary Cathrine, and then you 00:44:00started bringing in more Public Health Advisors. Can you give us a sense of what you started from, and how fast and how much you grew by?

STARCHER: As the cooperative agreements grew, we brought on the two individuals in surveillance. Jim Curran brought on a number of other Public Health Advisors in other areas that were not involved in surveillance. People like Harold [G.] Van Patten, and I mentioned before, Tom Leonard. Wilmon [R.] Rushing, who was Jim Curran's deputy was a Public Health Advisor. [Lawrence D.] Larry Zyla had already been here before-- he had come from the STD program from before. He worked in STDs, and he was in the program. [David F.] Dave Collie, John [P.] Narkunas, [Ronald L.] Ron Sanders, the program just burgeoned up. The program 00:45:00was just getting huge. Our offices, when I started, we were in building 6 in a long corridor of offices that used to house animals. The doors had windows in them, and the light switch was on the corridor wall so that people could flip on the switch and look in the office and see what was going on.

CHAMBERLAND: These rooms were where they had cages for the chimps for hepatitis studies.

STARCHER: I'm not sure if it was chimps, but there were definitely animals in there.

CHAMBERLAND: Large animals.

STARCHER: The baseboards were beveled concrete, so you could hose them down, et cetera. When I started, I had an office of my own, but as we got larger it was necessary to double up. I think we had-- actually in one room, we had five surveillance people at one time. The program was just growing because of the amount of disease. It just kept growing and growing, so we started bringing on 00:46:00lots and lots of additional people.

CHAMBERLAND: Also, with surveillance, AIDS case surveillance, growing and growing, this whole new -- I don't know if the right word is spin-off -- eventually occurred, which, once there was a test for HIV [human immunodeficiency virus], there was an interest in determining the prevalence of HIV. This, what was called the Family of Seroprevalence Studies came about in various populations to try and look at just how much AIDS or HIV virus was in these various populations. You were there at the time, because isn't that when seroprevalence and surveillance split off?

STARCHER: Yes, and Barbara [W.] Kilbourne, who was a nurse, I think, was working on the blood side of things. When I was there, I pretty much just dealt with 00:47:00AIDS case reporting, cases that met the AIDS case definition. I do remember working with [Ms.] Ladene [H.] Newton in the CDC policy office, and we were developing at the time The International Classification of Diseases, Ninth Revision [ICD-9] codes for the spectrum of disease, and I remember working with her. In terms of my own involvement, I really never got much involved in the HIV seroprevalence area.

CHAMBERLAND: Right, yes, because there actually had to be a physical splitting of staff. I think that was the time that you ended up heading up the surveillance program for a period of time.

STARCHER: The surveillance section, yes.

CHAMBERLAND: Yes, that section when that split. So, the program is growing, cases of AIDS are growing, the demands for data and information are growing. What was the work environment like? It sounds like it could have been pretty 00:48:00much of a pressure cooker.

STARCHER: It was a pressure cooker, and it was a pressure cooker in the sense that I remember arriving at four and five in the morning to start work and not being alone -- there would be other people there, and putting in long, long hours. It was necessary in terms of trying to stay-- keep up with things. A lot of the pressures were external pressures. Lots of inquiries from Congress about what was going on. Lots of interest from the media. It was a pressure cooker.

CHAMBERLAND: Oftentimes, people I think don't have an appreciation for the foundational nature of surveillance to public health. That it really is the foundation from which a lot of other special studies or prevention activities are born. Did you have a sense that surveillance was being appreciated at the 00:49:00time? That it wasn't just considered a poor stepchild for the whole AIDS program?

STARCHER: From my own perspective, when Jim Curran approached me in April of 1983 about coming over to work on surveillance, I really had a lot of second thoughts about surveillance. I will tell you that after being involved in surveillance for the time that I was, it was one of the most fascinating and important parts of my work in public health. In retirement, I have continued to use surveillance in many ways. I've done a lot of volunteer work for domestic violence prevention. When I would do the work with some of the organizations, they weren't looking at surveillance, and they didn't have good data to make strong arguments for the positions that they wanted to 00:50:00take. Being able to get those data and get those organizations looking towards data made all the difference in the world in terms of funding levels.

One of my favorite people at CDC was Dr. [Willard] Ward Cates, who I had the chance to work within STDs and in AIDS. Also, he was a great tennis player, and we had many battles on the court. Just an all-around great guy. He used to have this motto about see one, do one, teach one, and I took his motto to heart. In retirement, working with some of these organizations, I had the opportunity to work with a director for a domestic violence prevention organization, and I wrote the grants for her the first year. I made her watch. The next year I made her write the grants, and I watched. The next year she went 00:51:00to the state capital, and she taught grant writing for all of the organizations statewide. A part of the foundation was based on surveillance, being sure that people were collecting those data. I learned to appreciate surveillance, I really did. It is a critical part of public health. You can't do public health, I don't believe, without surveillance.

CHAMBERLAND: Long hours, pressure cooker, but what was the environment like?

STARCHER: The camaraderie was great. I give Jim Curran all the kudos in the world for the staff that he brought together and how he handled everything. He surrounded himself with just some dynamite people. I mentioned Harold Jaffe before. Harold went on to become a Center Director, and he went on to become the Associate Director for Science for CDC. [Dr. Kenneth G.] Ken Castro, who was an 00:52:00EIS Officer, went on to become the Director, Division of Tuberculosis Elimination. [Dr.] John Ward, who was an EIS Officer, went on to become the Director [Division of] for Viral Hepatitis. I mean, Jim just turned out great people in terms of his own philosophy, and they became great public health people in their own right. There were many, many other people. To me, it was one of the greatest environments, even though it was pressure-laden, it was one of the best environments I've worked in, in my career.

CHAMBERLAND: I want to switch gears a little bit, because you did move on from AIDS surveillance in June of '88 to Washington, D.C. A totally different environment and a very different job, working out of the office of the Assistant Secretary of Health -- something called, I think, the National AIDS Program Office.

STARCHER: The Assistant Secretary for Health created the staff office called the 00:53:00National AIDS Program Office. The director was Peter Fischinger. Dr. Peter [J.] Fischinger was the former Deputy Director for the National Cancer Institute at NIH [National Institutes of Health]. The concept was that the burgeoning AIDS problem was affecting all the PHS [Public Health Service] agencies to the degree that they wanted to get a better handle on what was going on. They created this office, and there were desk officers for each of the PHS agencies. I was fortunate enough to be selected.

CHAMBERLAND: Did you apply, or were you volunteered?

STARCHER: I actually applied.

CHAMBERLAND: You did. OK.

STARCHER: I applied for it and was interviewed by Dr. Fischinger and was selected. I had counterparts from NIH, from HRSA [Health Resources and Services Administration], from FDA [Food and Drug Administration], from all the PHS agencies. We were the focal point for our own agency in terms of bidirectional 00:54:00sharing of information. Information would come from CDC through the CDC Desk Officer there, and information from Washington would filter through me and back to CDC. I had a lot of responsibilities, including writing letters for the Surgeon General, writing letters for Congress, writing letters for the White House. Just a lot of involvement around AIDS-related activities.

I also got to play an instrumental role in the PHS Task Force for AIDS. They were in the process of developing a partner referral program for sex partners of HIV patients. They would not entertain looking at IV drug use partners, because IV drug use was an illicit activity and they didn't want to have that on their plate. They were only looking at developing a policy around basically contact [tracing], sharing, finding for HIV patients. I knew Dr. Kathleen [E.] 00:55:00Toomey from many years before. She was an EIS Officer in Alaska. She was also the Director for the Venereal Disease Control Division, or I think STD Control Division, at the time she was there, and she had gathered some data from Baltimore, looking at contact tracing for IV drug-using partners. Those data were overwhelming in terms of being supportive of the importance of doing that. I brought her up from Atlanta, and she presented to the PHS Task Force. She did a great job and sold them on it. So the PHS policy that came out included both sex partners and IV drug-using partners. I consider that one of the highlights of my time in Washington while I was there.

CHAMBERLAND: I just want to make sure I'm clear-- there were lots of entities, it sounds like, that had been formed up there. There was the National AIDS Program Office, which is you and desk officers from the other PHS agencies.

STARCHER: We were a staff office to the Assistant Secretary.

CHAMBERLAND: Okay, and then the Public Health Service Task Force. Just give me a little bit of background on who"

STARCHER: Those were more senior people from the agencies themselves. One clear example is Dr. [Anthony S.] Tony Fauci from NIH. He was a member, a very key member. [Mr. Richard] Dick Reisberg, who was the PHS attorney, was a member. It included senior people from the various agencies and all that we're putting together policies.

CHAMBERLAND: Okay. Okay. Gosh. Obviously, this was a big issue, this whole idea 00:57:00of the guidance that was going to come out about contact tracing. Who was the Surgeon General at the time?

STARCHER: [Dr.] C. Everett Koop.

CHAMBERLAND: Surgeon General Koop. There were other really hot-button issues that were going on in Washington in that time period, some of them that Dr. Koop was involved in. Were those things that you and your colleagues also had to help and support Dr. Koop with?

STARCHER: If it was AIDS-related, yes. If it was not AIDS-related, we weren't really involved.

CHAMBERLAND: This is when he put out this

STARCHER: The national brochure.

CHAMBERLAND: The national brochure, Understanding AIDS. Can you give us some behind-the-scenes about what it took to get that.

STARCHER: It was an extraordinary effort. You think about a mailing to every household in the United States. I mean, it was extraordinary. Dr. Koop was very supportive. Initially I was concerned, but he was very supportive of working on 00:58:00AIDS, so it was a pleasure to work with him. I didn't work that closely with him, and I didn't have private meetings with him, but word would filter down about what he needed or whatever, and I would try to be supportive for him.

CHAMBERLAND: That was somewhat controversial, sending out that brochure, as you said, to every household in America, because it contained some fairly direct text about ways in which people acquired AIDS and ways to prevent acquisition of the HIV virus. Traditionally, there are sometimes rivalries between the various Public Health Service agencies, CDC, NIH, FDA, whatever. They're mixing in the pot, because a lot of these issues really crossed over -- had facets that crossed over into multiple agencies. It wouldn't be just a CDC or just an NIH issue, for example. What was the camaraderie like up there with your desk officers?

STARCHER: I thought it was actually quite good, and there wasn't so much competition at that level. I remember working with Dr. Valerie [P.] Setlow, who was from NIH, and we had a great collegial relationship in terms of working together. It gave us an opportunity to see what other agencies were doing, how we could fit into what they were doing, how they could fit into what we were doing. I very much enjoyed my three years or so with the National AIDS Program Office.

CHAMBERLAND: Moving from Atlanta to Washington" in Atlanta you were operating, I'm guessing, mostly as a technical person, obviously with some in-house or external minefields to have to be dealt with. But moving to 01:00:00Washington, which is a hotbed of political and policy-making, all of that. Was that a hard transition?

STARCHER: It wasn't a hard transition. I had grown up in the area, and so I knew Washington pretty well. I tried to stay away from politics in general. The position as the CDC Desk Officer opened my eyes to a lot of other things that were going on with regard to HIV and AIDS at CDC that I wasn't exposed to while just working on surveillance. It was very personally rewarding to see what else was going on, to learn what else the agency was doing. It wasn't a hard transition for me. I thoroughly enjoyed it. I actually would have liked to have stayed in Washington, but the better half wanted to come back to Atlanta.

CHAMBERLAND: When you came back to Atlanta, it was in a different position-- you didn't come back to AIDS.

STARCHER: I came back as the Deputy Director for the Division of Reproductive Health. The predecessor there, [Patrick J.] Pat McConnon, who Id known from STD days, who was the Deputy Director, was taking a position with the Carter Center, and it had opened up that position. I was selected to be the Deputy Director there, which was also a very rewarding position. I thoroughly enjoyed my days with Reproductive Health. Ultimately I ended up, after about eight or nine years there, being asked to come over to the Directors Office to work with Dr. Claire [V.] Broome on the National Electronic Disease Surveillance System. I can thank Meade Morgan for throwing my name in the hopper on that one. It really came full circle in terms of my surveillance activities, 01:02:00and then working with Dr. Broome on the National Electronic Disease Surveillance System, so that was great.

CHAMBERLAND: You've alluded to this a couple of times, but I want to ask you directly, working as you did in the early days of the AIDS epidemic, you were part of something that really changed history and the course of public health, I think. How did that affect you personally and professionally?

STARCHER: I really have to thank Jim Curran for bringing me over. I guess I'd led somewhat of a sheltered life up until that time. I found it just critically important. In terms of the work that I was doing, while important in the STD program, to be dealing with a disease that was so devastating in terms 01:03:00of what it was doing to young people especially, talented people. Being at the forefront of working on that disease and trying to get a better understanding, I just found it very personally rewarding. One of the highlights of my career.

CHAMBERLAND: Are there things that you look back and think that maybe CDC could have done better, a better job of?

STARCHER: I don't think CDC necessarily could have done a better job. Early on we just weren't getting the kinds of publicity and support that were really necessary to get the word out about what was going on with AIDS. I think that was probably one of the most disappointing things for me. I couldn't see how anybody could have worked harder than the group that was working in the 01:04:00early days of AIDS. I just don't see how that could have happened. The support within the agency was phenomenal from Dr. Foege to Dr. Dowdle to Dr. Bennett to the attorneys. It was just phenomenal in terms of support. I couldn't have personally from my perspective asked for more support than I got.

CHAMBERLAND: I know when you talked about, after the initial MMWR came out and this ad hoc Task Force was formed and siphoned off a lot of people, you said very high- quality people from the division of STD started to work on this new disease. There was obviously no funding, there was no line item for this. Then the area that you worked in, surveillance, you described for us very well how that grew. Do you remember what it was that turned the tide, that all of sudden 01:05:00things started to change, AIDS became recognized as an important public health problem, and funding opened up. I don't know if it was just one event or just over time. Do you have a sense of what it was?

STARCHER: A lot of people will say the issue with Rock Hudson was maybe a big turning point in terms of getting the publicity out there about the importance of this devastating disease. I think the media was very important in terms of intending to highlight what was going on and all, in terms of maybe getting peoples attention. A lot of people will say it maybe was the Rock Hudson thing that got more publicity going on.

CHAMBERLAND: And started things turning around.

STARCHER: Then of course when Dr. Koop did the household mailing, and that 01:06:00started getting a lot more out there.

CHAMBERLAND: Are there any closing thoughts? Is there anything you'd like to add that we haven't covered?

STARCHER: In retrospect, for me personally, I was devastated when I didn't get to go to veterinary school. I never even conceived of a career in public health, but when I look back on my life, it was the most rewarding career one could ever ask for.

CHAMBERLAND: Tom, we're certainly glad that public health found you and that you gave it a try. This has been very interesting talking to you about the origins of surveillance, which is, as we said, so foundational to everything else that grew up around it at the times. Thank you so much for joining us in this conversation, very much appreciate it.

STARCHER: Thank you for the work that you're doing in pulling together all 01:07:00of these oral interviews and the histories. It's so important.

CHAMBERLAND: Thanks, Tom.

END.