Dr. Abraham "Abe" Macher Interview

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Psychologically, for many of the health care workers this was difficult, wewere we were not used to this. With the cancer patients, we gave themchemotherapythem chemotherapy, radiation therapy, and steroids, but many of them lived foryearsfor years. In fact, patients with Hodgkin’s disease were even cured, andchildren and children with acute leukemia were cured. The little boy with nocardiosishad nocardiosis had acute lymphocytic leukemia. That is a type of leukemia you can cure.So   So if you can treat the opportunistic infection, the nocardiosis, you can getthe get the patients through.

But this disease was different and even Tom Waldmann's first case onlylived only lived from April to October. We had others who died even faster. As we were a research center, the cases were coming to us. Many of them weredying were dying very quickly so it had a tremendous impact on many of the healthcare health care providers, especially when we went into the fifth, sixth, seventh, andeighth and eighth year of caring for AIDS patients. It is only now we realize thatAIDS that AIDS is a chronic disease and that it begins ten years earlier. If you thinkabout think about it, our man in 1981 did not just get his infection a month or eventwo even two months earlier; he got it in the 1970s.

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Macher: When we first did the longitudinal studies. As you know there are cohortstudies cohort studies of homosexual men who have been followed for five, ten, andfifteen and fifteen years. Since these men’s serum had been saved for hepatitis-BstudiesB studies, when the data started to come out for AIDS we were able to goback go back and look at the serum to see if it was antibody positive for HIV. Wefirst We first learned that we could actually tell which year the men becameseropositivebecame seropositive, when they developed lymphadenopathy, oral candidiasis, andfrank and frank AIDS. It was only from these cohort studies of male homosexualsthat homosexuals that we first realized that AIDS was not something that just happens and amontha month, or six months, later the person is dead. The disease process goeson goes on for ten long years. It was from those cohort studies relating to hepatitisB hepatitis B that we first realized that AIDS was a chronic disease.

Now, especially in our educational activities, we try to teach primary careproviders care providers that AIDS is indeed a chronic disease and these patients can bemanaged be managed effectively for many, many years. When they do develop severeopportunistic severe opportunistic complications, they can be referred to the experts, theinfectious the infectious disease consultants. Our primary effort right now is to explainto explain to these primary care providers, whether they are family practitioners orgeneral or general internal medicine people, that they can take care of these patientsfor patients for many years.

Harden: That is very interesting.

Macher: This is a major effort because when somebody goes into practice and has athousand a thousand people in their practice, it is difficult for them suddenly to bringin bring in HIV patients for multiple reasons. Sometimes, if other members of thepracticethe practice, both patients and providers, realize that AIDS patients are beingbrought being brought in they may not come to that practice anymore. It is very difficultto difficult to convince those who have already been in practice for ten or twentyyears twenty years to start seeing HIV patients for the first time. Many of us believethat believe that the group that most needs to be educated is the new medical, nursing,and  and physician assistant students. There are still able to accept this assomething as something that is their responsibility. If such students see the patientsearly patients early on, when they go into practice they are more willing to continue tosee to see them.

To this day there are certain physicians who refuse to see these patients.They  They tell us that and some say even worse. Our effort right now is tryingto trying to get information to the providers, showing them how to take care ofthese of these patients, both in the early, middle, and late stages of the disease, andproviding and providing them backup with infectious disease specialists who will givethem give them proper information if the patient does develop serious complications.

We are now developing networks. In fact, on March 4, 1993, weannounced we announced that the first nationwide 800 phone number was available forclinical for clinical consultations at San Francisco General Hospital. We help supportthat support that consultation service. As they get about thirty phone calls per day,they  they are very busy.

Harden: Is this for primary care physicians who are treating AIDS patients to callin call in and consult?

Macher: Yes. For instance, they call me in on the difficult cases and we talk aboutthemabout them. Florida just called them last week about a patient withmycobacterium with mycobacterium kansasii pneumonia and they wanted to know if thatpatient that patient should be isolated like a mycobacterium tuberculosis case and wediscussed we discussed that. So people are calling in about anything related to HIVcareHIV care, especially about doses of drugs and interactions of drugs. Imagine apatient a patient who is on twelve different medications. You start worrying aboutinteractionsabout interactions, side effects, and excretions. The 800-line that we have at SanFrancisco San Francisco General Hospital has clinical pharmacologists availableamongst available among its faculty consultants. There is no other service in the country,or  or the world, that can provide “warm” line information with backup fromclinical from clinical pharmacologists.

Harden: That is a project of the Health Resources and Services Administration?

Macher: Yes. I can give you literature on that as well. It is an exciting projectbecause project because it is very labor intensive. Imagine that the working hours of thepeople the people involved, Pacific Coast time, are from 7:30 in the morning to 5p5 p.m., which means on the East Coast from 10:30 a.m. to 8 p.m. Theconsultation The consultation service is getting calls from all over the country and thequeries the queries can be about anything. They take a history of the patient and theylisten they listen to the questions. If they do not have the answer immediately, theydo they do consultations among themselves and call back. If they are too busy totake to take the call immediately, people can leave an electronic message and theycall they call back. That is why it is called a “warm” line. A hotline means thatwhen that when a person calls in someone is always there to answer their question.

During 1985-1988, when I served as Director of the Collaborative Centerfor Center for the Investigation of AIDS and Registrar of the Registry of AIDSPathology AIDS Pathology at the Armed Forces Institute of Pathology, I ran an 800 hotlinebecause hotline because I knew that pathologists were having a lot of difficulties with thisnew this new disease as they had to diagnose unusual opportunistic infections suchas such as microsporidiosis, cryptosporidiosis, toxoplasmosis, and progressivemultifocal progressive multifocal leukoencephalopathy. Those are conditions that pathologistsare pathologists are not used to looking for. I had four pathologists, five days a week,including  including myself, to answer the 800 hotline. It was incredible. We heardabout heard about cases from all over the country, from all over the world. Peoplewould People would Federal Express biopsies to us because they could not make adiagnosisa diagnosis. We would cut the specimen, and stain it, to make a diagnosis.

Harden: I want to come back to this topic, but I wanted to ask Dennis if he had anyother any other questions he wanted to ask before we move on.

Rodrigues: You indicated that very early in your career you had an interest in politicsand politics and law, so perhaps you were attuned to what was was  happening politically. Ialways I always find it interesting to ask some of the people who were in thetrenches the trenches how they viewed what was happening politically with the rise ofthe of the gay rights movement and its harsh criticism of what was happening inthe in the administration and in the Public Health Service. How did those peoplewho people who were actually dealing with patients view the political firestorm thatwas that was raging about the disease?

Macher: That is a very interesting question, but we were so inundated, seven days aweeka week, twenty-four hours a day on call, that it did not really affect us. Wewere We were always in the hospital taking care of another emergency. I thinkwhat think what was happening affected the bureaucrats more than the primary careproviderscare providers. The gay rights people were not angry at us, they were notsaying not saying we were not taking care of the patients; they were angry at thebureaucracythe bureaucracy. We were so busy that it never really affected us and wenever we never got involved in that. In fact, I remember someone once told us thatthey that they actually marched on the FDA [Food and Drug Administration], hereat here at the Parklawn building, and threw some stones through the windows.

But we were so far removed from that. We were not bureaucrats. Wewere We were taking care of the patients. We never felt that they were angry at us.

Harden: On a personal level though, if I can take this one more step, a nurse towhom to whom we talked said that her sons did not want to have to say to theirfriendstheir friends, “My mother treats AIDS patients,” because there was somefalloutsome fallout. People would worry whether she had AIDS or whether she couldgive could give it to them. Did you have any personal repercussions in your family orelsewhereor elsewhere?

Macher: No, I was never in a situation where either friends or family said, “That isterrible” is terrible” or “That is disgusting.” I was always in a supportive atmospherewhere atmosphere where people said, “At least someone is doing it.” People were gratefulthat grateful that somebody would actually try to help the patients. Again, I am surethat sure that some people were in positions where what you have just describedoccurreddescribed occurred, but we were too busy. In fact, with the Military Medicine seriesthat series that I was putting out once a month, of cases for diagnosis, I had a thirtydaydeadline thirty day deadline for three years. I was writing up these cases all the time, andmaking and making all those presentations. Again we were too busy. We just did notget not get involved in the firestorm, and it was a firestorm, because we weredoing were doing the work. I think the bureaucrats were taking most of the firestorm.

Harden: I wanted to talk a little more about your time at AFIP [Armed ForcesInstitute Forces Institute of Pathology]. First, I wanted to ask why you decided to go intothat into that and get out of the situation at NIH where you were doing so muchdirect much direct patient care.

Macher: NIH works on a pyramid system and after you finish a residency orfellowshipor fellowship, unless you become a senior scientist, you go on to somewhereelsesomewhere else. At that point in my career I was not going to be a senior scientist andthe and the opportunity arose for me to start a registry of AIDS pathology at theArmed the Armed Forces Institute of Pathology, which until then had their AIDScases AIDS cases sort of scattered under people’s desks. The AFIP has, I believe,about  about forty different branches. OB/GYN cases are in OB/GYN eventhough even though it might be an AIDS case. That is the branch it is in. Butpulmonary But pulmonary cases are in the Pulmonary Branch, the brain cases are in theNeuropathology the Neuropathology Branch. Nobody was taking all of the AIDS cases andputting and putting them in one place.

Harden: What does a registry mean? Could you explain that a little more.

Macher: For instance, there is a registry at the Armed Forces Institute of Pathologyof Pathology of obstetrics and gynecology. If you want to know everything there is toknow to know about ovarian tumors, you go to that registry and they literally havean have an example, pathologically, grossly, and microscopically of every knownovarian known ovarian tumor. Or of every pancreatic tumor which is in the GI registry.

But there was no registry for AIDS. Since I was trained both in infectiousdiseases infectious diseases and in pathology, it was a good place for me to go to. I couldtake could take the clinical histories and rewrite them, take the pathology slides andstudy and study them to the umpteenth detail. We literally took every organ and didevery did every stain on every organ. Now when you do an autopsy you do not havethat have that luxury. You are lucky if you are in a medical examiner’s office if youget you get specimens to do one stain. You might be able to do it on a couple ofdifferent of different organs. I did every stain on every organ. It was very laborintensive labor intensive but that is what the AFIP was into, studying the pathology ofanythingof anything.

I wanted to define the pathology of AIDS and that is why the book cameout came out that you saw—AIDS: An Atlas of Cases for Diagnosis (Macher AM;1988 1988)—it is a color atlas. Since we had the funding we did the grosspathology gross pathology and the microscopic pathology in color, and we started to puttogether put together one of the first atlases. I wanted people to see in color, not inblack in black and white because it means nothing in black and white, to realizewhat realize what this disease could do. For me it was a natural stepping stone to go tothe to the AFIP at that particular time, especially since I had already spent a yearthere year there earlier in the 1970s as an infectious disease fellow and I was familiarwith familiar with the building.

I do not know if you have ever been to the AFIP but it has no windows ina in a certain part of the building because of concerns that if an atomic bombwere bomb were dropped on Washington the archives of all this pathology should notbe not be destroyed. So the older part of the building has no windows and haslead has lead and steel for feet at a time, and I was in one such part of the building.

Harden: I am trying to recall just when it happened. Were you there when youwere you were the consultant on the AIDS exhibit that the museum developed?

Macher: Dr. [Mark] Micozzi put together a plan to have an AIDS exhibit. I put upsome up some of the actual cases that we were seeing onto panels in color so thatpeople that people could see how the patients were presenting and how we workedthem worked them up pathologically. I guess that was the first AIDS exhibit they hadever had ever put together.

Harden: That was a good exhibit.

Macher: Thank you. Much credit should go to the people at AFIP because they hadthe had the foresight to do something on AIDS. As you know, the military hasmixed has mixed emotions about AIDS. Early on they did not want to do anything,but  but the AFIP thought it was an important project. Young children comethrough come through there all the time to look at the Civil War exhibit, and they wouldthus would thus also be exposed to the AIDS exhibit. I think it took a lot of courageto courage to put the AIDS exhibit adjacent to the Civil War room–it is an open area.

From the very beginning I thought it was important to educate childrenabout children about this new disease. The AFIP did a fine job. This whole process ofthe of the oral history is interesting for me because you are bringing back manymemoriesmany memories. We are so busy that we do not really have time to recollect onthings on things like this.

Harden: In the course of this interview, if you think of additional things you wouldlike would like to discuss feel free to do so. In 1988 you moved into your currentpositioncurrent position. As I said before we started, we would like to have an overviewof overview of what you are doing now, not only the conference calls but other thingsthat things that you think it is important that we record.

Macher: What I have been doing for the past four years is to serve as the medicalconsultant medical consultant to the AIDS Education and Training Centers. What I ambasically am basically doing is taking my entire experience from the NIH, from theAFIPthe AFIP, and educating primary care providers about HIV disease and AIDS.  Because of my clinical pathological perspective when I evaluateeducational evaluate educational training programs and when I do my own programs, I have alittle a little different perspective. I want people to understand that the patientswhom patients whom they will see for the first time have probably carried the virus for adecade a decade in many cases. When they become sick they do so because of thispathophysiological this pathophysiological process. I explain why the patients are having fevers,why  why they get oral candidiasis, why it hurts in the right upper quadrant,what  what our experience has been. When the patients present with headache, Iexplain I explain what are the causes of headache that I have seen.

Yesterday, at the Society for General Internal Medicine’s nationalmeetingnational meeting, the case of a thirty-one-year old man who had stabbing pain rightbelow right below the right eye was presented. When a CAT scan of his sinuses wasdonewas done, it was negative, but something was causing stabbing pain. Wetalked We talked about how you work up such a patient. You go the next step withan with an MRI scan. It is more expensive but that is what you do next. Sureenough Sure enough the MRI scan revealed a lesion, not near the eye but in the brainstembrain stem, which conferred pain. So I talk about it not just as a clinician but asa as a pathologist. I explain what it looks like inside not just on the outside.

As I told you, I will be going up to the Pennsylvania Department ofCorrections of Corrections because I do a lot of work in the prisons. The prisons rightnow right now are the petri dish for this epidemic. As you have seen on television,there  there are many problems in our nation’s county jails, state prisons, andfederal and federal prisons. Tuberculosis is there, HIV is there. Even though lettersfrom letters from Charles Colson to the editor of the Washington Post state that in hisexperience his experience in prison the omnipresent guards do not allow sex or drug useto use to occur—that statement is false. I do not even know why they let himpublish him publish that letter.

I have been in prisons. Do you know what a cell block cellblock is? It is a corridorwith corridor with two floors of cells on each side and it is very long. I have been incellblocks in cellblocks built for 400 people that have 750 in them. Everybody issmoking is smoking cigarettes and you cannot see half way down the cellblock. It isfull is full of smoke and crowded with people. When you ask the correctionalofficers correctional officers who are at the front of the cellblock, “Can you walk me throughtherethrough there?” they say, “No, I don't think it's safe.” If you ask them casually,“Do  “Do you think illicit activity is going on back there, because look howcrowded how crowded it is,” they will answer, “Oh, sure. They are having sex, and theyare they are shooting drugs.” That is where the HIV epidemic is right now and thatis that is where the tuberculosis epidemic is. These men that are coughing ineach in each other faces could have a cigarette cough and chronic lung disease,but  but it could also be tuberculosis.

Just last month in a prison in our area yet another prisoner who was HIVpositive HIV positive was released to a local homeless shelter. The shelter was assuredthat assured that he had been worked up for tuberculosis even though he had a cough.He   He spent twenty-nine days in the homeless shelter. He had pulmonarytuberculosispulmonary tuberculosis, multi-drug resistant, the worst kind. Again, the system hasbroken has broken down. There is no continuity of care for these people. One of ourmajor our major efforts right now is to get into these county jails, state prisons,federal  federal prisons, and teach the primary care providers what they need toknow to know about HIV disease and tuberculosis.

Harden: Now I want to ask a speculative question. I have this notion in my headthat head that many primary care physicians today are treating upper middle-classhomosexual class homosexual males who were infected ten years ago. I have also in myhead my head the idea that five, ten, or fifteen years from now those are not goingto going to be the patients. The patients will be prisoners, the homeless, and so on.Who   Who is going to be interested in AIDS? What will happen at that point?

Macher: Yes, the inner city Hispanics, African Americans, whoever is in the innercities inner cities right now, in Newark, New York, Houston, Miami, Cleveland.

Yesterday a private practitioner ran a workshop. I believe he has 100 HIVpatients HIV patients in his practice and the majority of those patients are middle- andupperand upper-class male homosexuals. Somebody asked him, “Who is seeing thedrug the drug abusers, the women, the prostitutes, the children, etceteraetc., who don'thave t have insurance?” He said he does not see such patients because, first ofallof all, they do not show up routinely so they disrupt his practice. Instead hesends he sends them to the public health clinics. That is where the epidemic is rightnowright now. It is in our community health centers, migrant health centers, ruralhealth rural health centers, public health units, and emergency rooms.

As you know, our inner city people use the emergency room as theirprimary their primary care provider. Not a week goes by without my hearing anotherstory another story about somebody showing up in the emergency room for HIV care,because  because they do not have a primary care provider they can turn to. Youcannot You cannot clog emergency rooms for HIV care. The question now, for thenew the new administration, is how do we correct the system. How do weredistribute we redistribute care? It is very expensive. You have to educate primary careproviders care providers everywhere on how to do this. That is also expensive and it isall is all labor intensive. This does not occur overnight and that is the dilemma.

In the homeless shelters in many large cities, a good percentage of thosepeople those people have HIV and are infected with tuberculosis. It is just a matter oftime of time before the latent tuberculosis that they acquired years ago reactivatesas reactivates as their immune system gets weaker. They start to cough, and they infectother infect other people. This again is a very labor intensive, economically costlyendeavorcostly endeavor. That is the problem right now with the HIV epidemic.

You are right that the middle- and upper-class male homosexual hasaccess has access to care. The rest do not. Every week we ask ourselves what is itgoing it going to be like in the year 2000. At every conference this is talked about.There  There are projections, and they show that upward slope of the curve. But,at  at the same time, the government is putting out these “Healthy Year 2000"objectives  objectives that seem in conflict with the reality that tuberculosis is on therisethe rise, HIV has not disappeared, and gonorrhea and syphilis are occurring.Yet   Yet “Healthy Year 2000" says by then 99 or 95 percent of the people willnot will not have these problems. Two branches of the government seem to goingin going in two different directions. Somebody is writing these “Healthy Years2000Years 2000"objectives saying that we going to cure this and cure that but thereality the reality is how can someone be cured if he or she does not have access tocareto care. It is a dilemma and almost an oxymoron.

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