The MacNeil/Lehrer Report; AIDS Alarm

[Tease]

FUNERAL DIRECTOR: With regard to the treatment of dead human remains from AIDS victims, that extended care should be taken by the funeral directing community to protect themselves and their employees and the general population from coming in contact with this disease.

Sec. MARGARET HECKLER, U.S. Department of Health and Human Services: If the misunderstanding about AIDS is allowed to grow, such a level of fear could actually impede us in our real tasks to understand and conquer this disease.

[Titles]

JIM LEHRER: Good evening. The facts are these. Two years ago AIDS -- acquired immune deficiency syndrome -- was identified as a disease in the United States, a disease which does just what its name says: destroys the body's natural immunity from many other diseases. Sixteen hundred and forty-one cases have been reported as of today; 644 of the victims, or 39%, have died. Seventy-one percent have been homosexual or bisexual males; 17% intravenous drug users; 5% Haitian immigrants; 1% hemophiliacs. The rest do not fit into any of those four high-risk groups. Overall, 109 of the victims have been women; 21 have been children. The cause of AIDS is unknown; so is how it's transmitted. These facts add up to an officially declared medical epidemic. They have also, according to Margaret Heckler, Secretary of Health and Human Services, spawned a second, psychological epidemic; one of fear, fear of catching AIDS. Both epidemics have been widely reported in the last few weeks, as any regular newspaper reader and television viewer knows. And tonight we look at both. Robert MacNeil is off; Charlayne Hunter-Gault is in New York. Charlayne?

CHARLAYNE HUNTER-GAULT: Jim, the fear of AIDS has been building for months in the gay community, but it was a report in a medical journal in early May about some of the affected children that helped spread the fear among the general public. The report suggested that AIDS could be spread to family members through casual contact, a conclusion disputed by many doctors. Still, it's been charged that the fear has spread faster than the disease. For example, some AIDS patients have been evicted from their homes and fired from their jobs.

[voice-over] In San Antonio, Texas, paramedics have been issued special anti-germ suits in case they have to help someone who has AIDS.

PARAMEDIC: We are involved with IVs, drug overdoses, things that involve needles and a lot of blood; vomiting, excrement, these type of things that all could possibly be reasons and ways of this disease to spread, so what it amounts to is a precautionary step on our part to try and protect our paramedics in the field.

HUNTER-GAULT [voice-over]: In San Jose, California, two nurses quit their jobs at a local hospital after refusing to treat an AIDS patient. In San Diego, a number of utility company workers have refused to take a mandatory course in cardio-pulmonary resuscitation because they fear that contact with the practice mannequin might give them AIDS. And in a number of blood centers around the country, like this one in Detroit, officials are reporting a sharp drop in blood donations -- as much as 30%. They attribute that, too, to the fear of AIDS.

Here in New York, where roughly half of the AIDS cases have been reported, the funeral directors' association recently called for a moratorium on embalming victims.Here to tell us why is the president of that association, Lester Grummons. [on camera] Mr. Grummons is also a funeral director in Oneonta, New York. Mr. Grummons, why a moratorium?

LESTER GRUMMONS: Well, basically we are very concerned about this disease, and we feel as though that we need more explicit guidelines presented to us through the disease control center in Atlanta. We really don't know what we're dealing with, and we feel a responsibility to our membership in educating them in terms of the seriousness of the disease.

HUNTER-GAULT: Just how worried would you say the funeral directors are? I mean, there have been reports that some are even refusing to take AIDS victims.

Mr. GRUMMONS: Basically I don't think it's one of worry or panic that is expressed in the funeral profession; it's one of caution and deep concern. We do have a serious disease here. We need to deal with it, and we intend to deal with it. But we're going to deal with it on a cautious basis. We are looking to the experts for advice.

HUNTER-GAULT: Well, what is so special about AIDS? I mean, what, for example, would a funeral director in dealing with an AIDS victim that he wouldn't face in dealing with the victim of some other deadly, contagious disease?

Mr. GRUMMONS: We're basically concerned about any communicable disease that we come in contact with. Most of the communicable diseases that we know of today have either a vaccination or a cure for such. The AIDS being such an unknown, there is no known cure. We are extremely cautious and are very concerned in terms of the representation that we offer to our members in advising them of this situation because of the unknowns.

HUNTER-GAULT: Well, all right. In addition to the moratorium and the guidelines, are there other precautions or other things that the funeral directors would like to see done?

Mr. GRUMMONS: Last week, on June 22nd, Governor Cuomo directed Commissioner of Health Dr. Axelrod to prepare a series of guidelines in conjunction with the disease control center in Atlanta, to be offered to funeral directors. These would be definitive guidelines specifically for the purpose of embalmers in the day-to-day operation on that procedure on AIDS victims.

HUNTER-GAULT: But in the meantime, there aren't any other practical steps that you think should be taken?

Mr. GRUMMONS: Basically, we're advising our membership to use extreme caution in the preparation room and as they would prepare the AIDS victims for final disposition.

HUNTER-GAULT: Do you think any mortician would be justified in refusing to embalm an AIDS victim?

Mr. GRUMMONS: We as an association have set down a guideline up until the time that we receive more definitive guidelines. I assume that the mortician would use his discretion. I think that the guidelines that we have set forth are quite explicit --

HUNTER-GAULT: Like what, for example?

Mr. GRUMMONS: Well, we're asking our members, we're suggesting to our members that the embalming procedure be eliminated up until the time that the guidelines are received, and that the remains be placed into a sealed pouch and then permanently placed into a closed container or a casket. This by no means would preclude the funeral process. The funeral process could still take place. This is basically what we have recommended up until that time.

HUNTER-GAULT: Very briefly, how do you respond to critics who say that you people who have taken positions like the one you've just outlined are really contributing to the panic by the very measures that you've taken?

Mr. GRUMMONS: Well, we don't feel as though that we're contributing to any panic situation whatsoever. We're taking a professional stand. And we do have a very serious role here to play in this situation because of the fact that we will come in direct contact with those individuals who have the -- who are unfortunate and do contract and die from this disease.

HUNTER-GAULT: All right, thank you. I'm sorry?

Mr. GRUMMONS: By no means are we in a panic situation.

HUNTER-GAULT: All right, thank you. Jim?

LEHRER: The federal agency primarily responsible for tracking the statistical and medical reality of AIDS is the Centers for Disease Control in Atlanta. Director of the AIDS effort is Dr. James Curran, who is with us tonight from public station WETV in Atlanta. Dr. Curran, are Mr. Grummons' concerns justified?

Dr. JAMES CURRAN: Well, I think that I can understand the concerns of a group dealing with exposure to blood, and I think in order to address those concerns the CDC has worked with the U.S. Funeral Directors Association, and that association has promulgated guidelines for its members. Since these guidelines must be instituted on a state-by-state measure, we're also working with Commissioner Axelrod in New York State and the group in New York State to make those guidelines more readily available and known to their members.

LEHRER: Now, I take it it's a yes. Morticians should be afraid of dealing with AIDS victims?

Dr. CURRAN: No, I don't think, Jim, that fear is really the appropriate response. I think rather appropriate caution in dealing with blood for infectious agents such as, perhaps, AIDS, but also hepatitis B should be undertaken. I think it's important to use blood precautions.That is not a cause for fear or panic, however, and I think that we can be quite certain now that casual contact with patients with AIDS is -- offers little or no risk at all.

LEHRER: Little or no risk? On what do you base that, Doctor?

Dr. CURRAN: Well, I think we have to look at the past, and we have to look at the some 1,650 reported cases and the literally hundreds of thousands of people who have come into casual contact with those cases since they were first diagnosed in 1978. The pattern of illness rather would suggest that it is caused by a transmissable agent, but one that is transmitted through very intimate, close contact or perhaps, rarely, through blood and blood products.

LEHRER: In other words, a mortician, paramedic, nurses, the folks who have expressed the most concern -- I'll stay away from the word fear -- the folks who have expressed the most public concern up 'til now really don't have anything to worry about. Is that correct?

Dr. CURRAN: Well, I don't think that we're going to see any large number of cases in groups such as these.I think that it's always important for medical groups and for groups who deal with blood and blood products and potential infectious agents to have procedures that they take and that they uniformly take, and that these procedures are well known by their members. So I think that the development of guidelines for morticians, the development of guidelines for hospital medical staff are important and that they should be followed, as they should wit x any infectious disease.

LEHRER: Well, that's my point. If I read correctly what you're saying, that AIDS is not a special case, though? I mean, this should apply to any kind of infectious disease. Is that correct?

Dr. CURRAN: Now, that's right, Jim, and I think what's made AIDS special and the concern is the unknown, the ambiguity, the severity of the disease. Rather, we should try to use common sense and apply well-schooled principles and not panic.

LEHRER: Well, what would you see as the common-sense approach that a mortician like Mr. Grummons, the paramedics in San Antonio, the blood donors in Detroit -- what is the common-sense approach to use right now?

Dr. CURRAN: Well, a common-sense approach taken by the U.S. Funeral Directors Association involves following the principles used in preventing hepatitis B infection, an infection which is transmitted through blood. That involves use of gloves in handling patients, appropriate sterilization of materials, appropriate sterilization of autopsy room materials and embalming room materials at the time. I think similar precautions taken by medical and health care personnel also follow the hepatitis B experience, an infection which is well known in the country at this time.

LEHRER: Finally, let me ask you this, Doctor. Of the 1,600 and roughly 50 cases, have there been any that have involved health care personnel, morticians, anybody like that?

Dr. CURRAN: There have been no cases in health care personnel that can be attributed to exposure to blood products or blood from caring of patients. There have been several cases among high-risk group members who are health care personnel, most likely unrelated to their medical care.

LEHRER: Thank you. Charlayne?

HUNTER-GAULT: As we said earlier, the growing fear of AIDS has been blamed for the sharp drop in blood donations. In fact, a number of communities are even talking about setting up their own blood donation registries so they can choose their own blood donors. The idea has so alarmed officials who run the nation's blood banks that they collectively issued a condemnation of the proposal last week. One of those officials is Dr. Joseph Bove of the American Association of Blood Banks. Doctor, what is wrong with people choosing their own blood donors?

Dr. JOSEPH BOVE: Well, there's not a bit of evidence to suggest that a patient can select a safer donor than the system. In terms of AIDS, the risk, if any, of AIDS from blood transfusion is so low that it's unlikely that any other selection system could lower it. We're talking at most of an incidence of about one in a million -- at most.

HUNTER-GAULT: So that what you're saying is that there's basically no justification among people who have concerns about contracting AIDS through blood donations?

Dr. BOVE: Well, you absolutely cannot get AIDS through blood donation, and that's a mistake that's made occasionally. The donation of blood is perfectly safe, and there's no way to get AIDS from donating blood.There are perhaps a handful of patients who have contracted AIDS and for whom no other risk factors have been identified -- although that's not to say there aren't any -- and who have in their background blood transfusion. Since AIDS certainly looks like an infectious disease, and since we know that some infections are spread through blood transfusion, it's not impossible that an occasional recipient of blood could come down with AIDS transmitted through the transfusion. But absolutely no donor can get AIDS through the donating process.

HUNTER-GAULT: Well, how can you and other health officials be so sure that AIDS is not present in the blood supply when, especially since you cannot detect AIDS through any kind of blood tests?

Dr. BOVE: Well, of course in medicine you can never be sure of anything, really. On the other hand, about 10 million transfusions are given in this country each year, so that would mean about 30 million have been given in the past three years. And if anyone has gotten AIDS from these transfusions, it's a mere handful of people. So the epidemiologic evidence is pretty good right now that we don't have a major problem with transfusion-transmitted AIDS.

HUNTER-GAULT: Well, what kind of precautions do you take to ensure as much as possible that there aren't people giving blood who have AIDS?

Dr. BOVE: Well, certainly we are asking each donor about symptoms of illness -- not AIDS, particularly, but symptoms of illness. We don't want donors with any illness to give blood, so we're asking people about fever, night sweats, swollen glands and things like that.

HUNTER-GAULT: These are symptoms of AIDS?

Dr. BOVE: And of other diseases, but AIDS as well. In addition, each blood donor, prospective blood donor, is given some kind of a brochure containing a fair amount of information about AIDS, and outlining the high-risk groups. And according to federal recommendations which we are following, individuals from those high-risk groups are being asked to voluntarily refrain from donating blood until we know more about the disease or have a specific test for it.

HUNTER-GAULT: Are you very concerned that if this trend continues, there'll be significantly more risk to the blood supply?

Dr. BOVE: I have trouble seeing a trend as yet. We have one case report in the literature, and in conversations with Doctor Curran and others at CDC, I am aware that they are following a few others, but I'm unwilling to call it a trend yet.

HUNTER-GAULT: All right.Jim?

LEHRER: Nearly three-fourths of all AIDS victims have been homosexuals, and their leaders say the second AIDS epidemic, of fear, is bearing down on them the hardest, too. The largest homosexual rights organization in the country is the National Gay Task Force. Its executive director is Virginia Apuzzo, who is also a former deputy commissioner of health for the city of New York. Ms. Apuzzo, how are gays being victimized by the fear of AIDS?

VIRGINIA APUZZO: Well, Jim, I thinkthe fear has -- is taking place in a context in which there's been historic prejudice and historic fear about homosexuals and enormous misunderstanding about the homosexual lifestyle. I think we have seen a litany of instances where gays have been put out of their homes, literally moved out of their homes, because of fear of AIDS.

LEHRER: In other words, these were not gay people who actually had AIDS? They were just --

Ms. APUZZO: No, we are -- what we are seeing, Jim, is people who perceive that they're dealing with homosexuals, especially male homosexuals, are beginning to take on all of the panic and apply AIDS almost as synonymous with homosexual. And so much of the fear and reaction is being applied to homosexuals who are not at all at risk for AIDS.

LEHRER: Well, how much of that fear is justified? Any of it?

Ms. APUZZO: Well, I don't know, Jim, that that much is justified. I think probably what the gay community has been saying could be easily supported by the larger community that seems to be very alarmed, and that is, we have asked for two years -- fully two years, Jim -- that the vast resources of the government be applied to looking very carefully, researching this problem, and coming up with a solution that will not only eliminate the kinds of fear that the gay and lesbian community has experienced, but also the fear that the larger community has experienced, because it's falling, again, in a context of enormous misunderstanding.

LEHRER: Based on what I have read, I mean, the fear and panic that we talk about from people in the rest of the community that is truly severe within the gay community. Is that true?

Ms. APUZZO: It absolutely is, Jim. The community, in addition to fearing the disease itself, the community is very, very concerned that we will be allowed to languish without the resources of the government being applied forthwith to this problem. And you must understand that it's happening to a community that has been consistently disenfranchised from the administration, consistenly disenfranchised from those issues that affect its life. I mean, we have simply not been part of the process, and now suddenly we are being asked to believe that because, you know, the health authorities tell us it's a number-one priority, that the resources will be there to deal with that priority, and we're not seeing that happen, Jim.

LEHRER: Well, the second part, though, is what -- while that part of the process of the search for the cure and etcetera goes on in the scientific, governmental community, what can be done about this fear that's growing? What do you think should be done?

Ms. APUZZO: What we're doing in our own community, the National Gay Task Force has had a crisis line, an 800 line, for nearly a year now, and we've been responding to calls not only from gays and lesbians but also from the larger community. We have, in the gay community, mobilized our resources at a phenomenal level and a phenomenal rate, and provided resource information. We have dealt with this blood issue that was discussed earlier head on by going to our community in one of the most unprecedented efforts at public health education, and urging our community that if you perceive that you are at risk, refrain from giving blood. Rather than have to avoid the problem and avoid the task of public health education, we have attempted to involve ourselves. Additionally, we have had community efforts across the country that have, with deliberate speed, provided everything from public health education to patient care, to lobbying on behalf of our concerns vis-a-vis the AIDS epidemic. I think the gay community has responded in a fashion that perhaps points a rather shameful finger at the lethargy of the government's response, especially where research is concerned.

LEHRER: Well, thank you. Charlayne?

HUNTER-GAULT: Dr. Curran, can you just respond to that last point? Has the government been lethargic and not forthcoming with sufficient amounts of research and other resources?

Dr. CURRAN: We at CDC have been working on this for two years, and I'd have to share some of Ginny's frustrations at the inability for a solution to the problem to come forth. I think that a lot has been done in the last two years. The pattern of the disease is now well-characterized, and I think there are recommendations for prevention for all risk groups. Secondly, I think that the pattern is now quite clear for the direction of research. That's really only been true in the past year, with the clarity of the pattern of the transmissable agent theory. Perhaps things have gone too slowly, but I think that now a lot is going on and that there really are scientists mobilized throughout the country to find the cause and cure and prevention for AIDS.

HUNTER-GAULT: Ms. Apuzzo, is that satisfactory?

Ms. APUZZO: No, I'm afraid -- and Jim and I have gone round on this before. My concern is that the funeral directors, for example, are terribly concerned about the notion of an infectious agent. If that is the case -- and I certainly can understand that concern -- I would wonder why the authorities cannot give me a reasonable answer for the fact that the whole research thrust vis-a-vis infectious agents -- we haven't seen any research grants published until May of '83, and it's my understanding that that money will not be putting to work the efforts until October of '83. Charlayne, that's fully two years after CDC said that there was a problem and that they were only seeing the tip of the iceberg.

HUNTER-GAULT: Dr. Curran, we just have a few minutes left, and I'd like to get your reaction to what Ms. Apuzzo just said about the delay, and also if you could give us some idea about just how close research is to finding a cause, if not a cure, for this disease?

Dr. CURRAN: Well, you know, I'm an epidemiologist who is also frustrated that the very best virologic laboratories in the country have not been harnessed and in the effort as soon as I recognized and thought that the problem was related to an infectious agent. And I suppose from my background I had that bias from nearly the beginning. The evidence was not sufficiently clear, however, to attract those scientists and to mobilize those virologists into effort. The funding process does involve things like peer review, and I think that's an important thing from a competitive point of view. Right now --

HUNTER-GAULT: Dr. Curran, I hate to interrupt you, but we're running out of time and I would like to know just what your sense is of how soon before there will be some results, either on the cause or the cure.

Dr. CURRAN: Well, partly with unfounded optimism I think that we are close. I think that the recent findings of certain types of retro viruses as related to AIDS would suggest that perhaps that's a very good, provocative lead. I'm hoping myself that the next several months will produce even further leads in that area.

HUNTER-GAULT: Dr. Bove, do you think that if this fear -- how much of an impediment to resolving this problem do you think the fear that we've discussed tonight is going to be?

Dr. BOVE: I don't knowabout resolving it, but it certainly is a problem in dealing with the problem, in dealing with the people, dealing with the patients, and dealing with the entire problem. The fear is a real impediment to all of that.

HUNTER-GAULT: Very briefly, are you reassured by what Dr. Curran has said that the funeral directors and others can do, that they can simply apply common-sense approaches to dealing with this problem and it not be a major problem for you?

Mr. GRUMMONS: Sure, our basic operation, in terms of the embalming procedure, we do use a great deal more of a common-sense approach -- the gloving, the special gowns, and in this situation, probably masks and caps.

HUNTER-GAULT: But do the things that he outlined diminish your fear? We just have time for a quick response.

Dr. BOVE: The thing that concerns me is the situation in which he states that no caregiver that has come in contact with an AIDS victim has contracted the disease. As I understand it, the incubation period with this disease is three to four years, and it's possible that some caregiver has come in contact with it, but it hasn't manifested itself.

HUNTER-GAULT: All right, I'm sorry.We have to leave it there; we're out of time. Jim?

LEHRER: Yes, Dr. Curran in Atlanta, thank you very much; Dr. Bove, Ms. Apuzzo, and Mr. Grummons, thank you. And good night, Charlayne.

HUNTER-GAULT: Good night, Jim.

LEHRER: And we'll see you tomorrow night. I'm Jim Lehrer. Thank you and good night.