Illustrated Daily; 5128; AIDS, Part 2

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The Illustrated Daily, Managing Editor Hal Roads. Good evening. A recent report by the Congressional Office of Technology Assessment was critical of federal health agencies response to the general health threat posed by the deadly and spreading disease known as acquired immune deficiency syndrome, AIDS. Similar criticisms in all parts of the nation have been leveled against state and local responses. The charges follow a pattern, two little funding, two little recognition of the dangers, and bureaucratic inertia. Spokesman for groups devastated by the disease at another charge, prejudice which they say dangerously inhibits research

and public health responses. I feel that the situation in Mexico right now concerning AIDS is one which is at a crucial point, and the reason I feel this way is because this is a new disease. This is not an old disease that health professionals already know about. This is not an old disease that the public already knows about. Everyone has to be educated about this. Unfortunately to popular opinion about homosexuals, people don't want to hear about it. They would like to believe that it is a disease that only affects homosexual men that will not touch their lives, and I believe would like to take a kind of stance that says they're going to put their head in the sand and hope it will go away, which it isn't going to. And it is not a gay disease, it's a disease that's going to affect all of us. Last night, a look at the anatomy

of what has been called the disease of the century, but increasingly those close to the widening AIDS epidemics say it may be much worse than that. Tonight, the human side of the AIDS story in New Mexico, its impact on individuals living in the shadow of the disease, volunteer efforts to provide education for those at risk, and assistance to its victims, and public health preparedness for the pressures which have in every instance overburdened medical and social services wherever its vengeance has been felt. AIDS is an international health threat. In Africa, nations like Zaire and Epidemic killing slightly more women than men. In the United States, where nearly 10 ,000 have become victims, over 70 % of the cases have been gay men. In New York City, they number in the thousands. In San Francisco, someone dies of AIDS every day. Compared to these nightmares, New Mexico, with eight

officially recognized AIDS cases, has seemed to harbor a safety and a sea of danger. But recently, a disturbing situation has emerged. Nationally, the number of AIDS cases doubles every six months. In New Mexico, the number of cases recently doubled in a period of three months, four in January, eight in April. Is it an anomaly, a glitch in the national pattern, while we can certainly hope? But Don Schmidt, one of the founders of the volunteer organization, New Mexico AIDS Services, remembers the Dallas experience. Nobody knows. You know, we don't know. Does it double every six months, or every three months, or every eight months? We know that in some places, it's gone very, very quickly. I believe it went from 26 to 118 cases in an 11 -month period in Dallas during 1984. That's a lot more than doubling every six months. 34 -year -old

Don Schmidt is one of those who lives in the shadows of AIDS. Two men, with whom Schmidt was intimate, have died of the disease, and Schmidt himself may be a victim of what is being called AIDS -related complex or pre -AIDS. A number of people that I know very well, including two people who I was intimately involved with within the last five years, have died of AIDS. I've been quite close to six people who have died of AIDS. In all cases, the deaths were not at all pleasant. They were very, very difficult. I think maybe the hardest thing for me to witness and be supportive of a person through is when one of my friends had a lung collapse, which is quite common with people who have pneumocystis pneumonia, and it's an extremely painful thing to have happened to a person, and then the process of re -inflating that lung is not very pleasant either. I assume very similar to many

types of cancer. It's a very, very painful, drawn -out process. For my friends, one of the people I know had been diagnosed with pneumocystis and was having incredible difficult time breathing and was in an outpatient status at the time and he went into the AIDS unit at San Francisco General Hospital and had a coughing attack and had a heart attack during the time he was coughing and died of a heart attack. The ways death comes upon people with AIDS can be very different. Sure. And none of it has been pleasant. Given what you have experienced and what you've told us, given the fact that you have yourself at times evidenced symptoms of what is called AIDS -related complex, ARC, what is it like to live in the shadow of AIDS? ARC is, we don't know what ARC is. ARC is what used to be referred to as pre -AIDS. Pre -AIDS or ARC means that someone has been

exposed to the virus. Someone has some symptomatology that appears AIDS -like, be it a period of time that lymph nodes are swollen or be it night sweats or be it a number of different things. All of which symptoms could be symptoms of other things, including symptoms of stress, including symptoms of various kinds of flus and viruses. For me, I know that I have been intimate with people who have died of AIDS. I am at risk. I don't believe that I have an ARC condition, AIDS -related condition, but I'm not sure that I don't. What's it like to live in the shadow of that reality or uncertainty? I guess I would rather not live in the shadow of that uncertainty, but I don't have a lot of choice. The one thing I've learned in seeing my friends die over the last

couple of years is that it isn't really how long you live, it's how you live, it's important. I guess I'm very methodical in doing what I believe, I should be doing with my time, maintaining my relationships with people in a positive way. I think it brings to mind the importance of living day to day. I don't assume it's any different than people living with cancer, living with many other kinds of terminal illnesses. The difference about AIDS, however, is that it is impacting, now of course, it's open to impact everybody in this country, in my experience, in my community, in the gay men's community, all of us are at high risk and have been at high risk. Few of us are in a situation where we don't know someone who has died of AIDS or is about to die of AIDS, so we are living with people close to us and good friends of ours dying, and then another person dying, and then hearing about a diagnosis of yet another person. For a while, I thought it would become easier when I heard about another

person being diagnosed. I'm not finding that to be the case. It's energized me to put a fair amount of my free time in devolunteering for New Mexico AIDS services, New Mexico AIDS services, I believe, is very needed in this state and needs to do a lot of different things, to make the process of dying for those people with AIDS, one that is in contains a process that allows for dignity for that person, a process that well individually, individually in your case. I mean, I've talked to other people in your condition and they say they find it not knowing they have this extraordinary awareness of their physical condition of their body. It is certainly. When I take a shower, I look at my body, I see, I look to see if there's anything that might be a KS lesion. My closest sarcoma lesion. The closest sarcoma lesion. And of course, if you're looking for

a closest sarcoma lesion, you will find a blemish or a pimple every time one is there. I have had a number of these checked out and I have not discovered any karposi sarcoma lesions. Certainly, I am aware of my body, I am aware of my much more aware of my diet than I have been. I am careful about getting the amount of rest I need, I am careful about scheduling my life and doing what I want to do with my life. I quite frankly, most people who have had lovers or others who have died of AIDS have not come down with it. Most people who have been exposed to the HTLV3 virus, which surely I have, are assumed that they are not going to develop AIDS. For me, I guess I'm viewing it as something that I might die of, something that I have probably at greater

risk of getting AIDS than many other people. But I can't live my life assuming that I'm going to be dead in two or three years. If in fact that's the case, that will be the case. You mind talking about this? Yes and no. Fear of the unknown is a real difficult thing and AIDS is in many ways fear of the unknown. What we can know about it, at least helps us put some of that fear in perspective. It doesn't alleviate all of our fears, it's a very scary thing. Because fear, born of the unknown inevitably, accompanies AIDS wherever it strikes, here in New Mexico, a growing number of private individuals and groups, including the recently organized New Mexico AIDS Services, have been formed to help those who live in the shadow of the disease. According to

AIDS Services Board Member Don Schmidt, the agenda is clear. Support for people with AIDS, education regarding lifestyle changes that might be helpful in preventing the spread of AIDS, I think, is crucial. And I think the sooner that happens, the better the impact is going to be in terms of saving lives. And under that umbrella, under that education umbrella, I think there has to be some kind of a way to deal with fear and to get information out, such as the hotline services that we're attempting to set up and worried well -groups for people who have fears about possibly developing AIDS or AIDS -related conditions. It is okay to be afraid. I'm scared. But knowing a little bit about AIDS can help us to keep that fear in perspective. Like groups elsewhere, New Mexico AIDS

Services struggles for financial support and was disappointed when recently the United States Conference of Mayors rejected a funding request, permitting the establishment of something commonplace in other areas where AIDS is a menace and AIDS hotline. But another private organization in the state, Common Bond, is maintaining a telephone information and referral service for those with AIDS -related questions. You know, other than people who are most concerned with parents and especially when the issue is on TV a lot, we get a lot of calls from parents. And they must be oftentimes they're more concerned than their children are because they don't have a lot of information available to them. And they're afraid, you know, their kids are going to come down with AIDS. Beyond this information line, Common Bond, New Mexico's

largest predominantly gay and lesbian organization, also recently sponsored a much publicized, albuquerque public forum on AIDS. The session featured Espanola Physician and New Mexico AIDS Services President, Dr. Jim Bell, under editorial criticism in the state for his AIDS information reporting policy, has also drawn criticism for using out -of -date and incomplete information in his public presentations on the disease. Last week at the annual meeting of the New Mexico Medical Society, which devoted an entire day of its proceedings to AIDS, Hall profiled the rapidly changing AIDS story with information four months old. It was a repeat of what happened just days earlier at the Common Bond forum. And it does not sit well with Common Bond President, Annie Dority, herself a nurse. The CDC and Atlanta releases,

I believe every three months, new slides. He showed a lot of slides that were released in January. The last time slides were released was March 4th. Statistics are released on the first and the 15th of every month. Now, if the state epidemiologist doesn't have access to these, I mean, that's, he does have access to these statistics. And if Common Bond can find out this information, I'm sure he can. And it was very disappointing that he did not address us with pertinent statistics. And it was very disappointing that he made no mention of how the state plans to deal with the projected number of AIDS cases that we will be dealing with in five years. Criticism of Hall has put his boss, state health and environment secretary, Fitzhue Mullen, in a difficult position. Privately, Mullen acknowledges his health department has

lagged behind private efforts in responding to the developing AIDS threat in New Mexico. Publicly, however, Mullen is not inclined to join Hall's critics. If his performance before a group of folks was not to their liking, I am eager to know about that. I'd like a little substance put to that. I can't respond to it. I can tell you, and I don't think that it serves either the gay community as represented by Common Bond or our state's efforts to get cracking on the AIDS issue, to pick on one individual that for whatever set of reasons accurate or inaccurate, one group feels to have been less than responsive. I don't think that's an issue that will profit us particularly. If as individuals or groups articulate issues, the state is failing to respond on. And I mean substantive issues. We have been laggardly in terms of our

AIDS testing. We have been insufficiently responsive in terms of developing educational materials. Someone or some program has been prejudicial in whatever. Those are substantive issues, and I commit myself to you. I will deal swiftly and harshly with situations or individuals like that. Individuals and situations notwithstanding what about the long haul and creation of a state AIDS policy? Clearly, the initiative has fallen to Mullin. Our plans for the immediate future are as follows. I will be recommending to the governor in the very near future the establishment of a formal AIDS work group AIDS task force. I would envision that this group would have representatives of the health and environment department, including myself. It will have representatives of the gay community, and we will be asking certain individuals from the private medical

sector, particularly the infectious disease specialist who are having the major experience in treating AIDS to work with us. There may be other individuals representing such points as the blood bank, the medical examiner's office and the like, that we would ask to participate in this. To date, there have been efforts on the part of the gay community, which are to be commended for bringing this to our attention. There have been efforts on the part of a physician's work group that has looked into issues such as blood banking, but we do not currently have a cross -sector group that will take the issue, which is not, as I say, something you find in the textbooks, but take the issue, look at it in terms of its national data, and then look at it in terms of its New Mexico data, and figure out as we go the policy and strategy courses that we should undertake. Following up on Mullins' recommendations, just last week, Governor Tony Anaya did indeed instruct his health secretary to create a working AIDS task force. And Mullins

believes the state is now in a position to take a leadership role, working in tandem with medical experts and private groups, in coming to grips with AIDS in New Mexico. It is a move which encourages Don Schmidt, because AIDS is not only deadly, it is costly, both to its victims and to the public health system, especially in a state like New Mexico, where nearly 25 % of all residents are without health insurance. We know that it costs $146 ,000 on average for a person with AIDS in terms of medical care costs, from the time of diagnosis to death. I would assume that the people who have AIDS will break down along the same kind of statistical way as everybody else in the state, and will probably find the same percentage without health insurance. And when there is no health insurance, the public sector is responsible for caring for people, and it's going to be an enormous burden on the state of New Mexico. The more cases there are,

the more the burden. I'm going to ask you this, Don. Have you had or would you have the test for the antibody to HTLV3? To find out that one has been exposed to the virus doesn't tell you anything. A million people have been exposed to that virus. I know I am one of them because of a relationship I've had in that person having died of AIDS. That doesn't tell me, nor will the test tell anyone else, whether that person is a carrier of the virus, whether they're going to develop AIDS, whether they have, what the test tests for is antibodies to the virus. Whether a person's system has fought off the virus, and they'll never get it, and they have in no way a carrier for someone else, the test doesn't tell you anything. What it does tell the people at the blood banks is that this person has had some

contact with a person who has had the virus. This person has had some contact with the virus. And I think it's very good that people who have had contact with the virus not be donors into our blood system. If you look at the figures nationally, the risk of an individual who's been transfused, getting AIDS versus someone who was not transfused and is not from a high risk group, is not that much different. It's being quoted now as 0 .4 per 100 ,000 versus 0 .1 per 100 ,000. So while there is some increased risk, it's relatively small. When you then come to an area like ours where the disease is not endemic, where we've had a good program with the state and with the Mexico physicians for human rights and the gay groups for discouraging donation, then the blood supply becomes safer still. And we believe that additional margin of safety will be added with the HTLV3 test, which we're now phasing in, but all units that are positive are being destroyed at the present time. So that the safety for the

recipient has been safeguarded well. We are still dealing with the disease that over a time seems to be 100 % fatal and a disease which at least up until now has never been recovered from in the sense that we've never gotten an immune system back once the injury has happened. It's potential for spread is just incredible and without any tools to combat the underlying problem of the insult to the immune system at this point in time. It seems to me that we have either the choice of somehow reducing the spread through education and changes in people's behavior or it's just going to continue to spread. From everything I have been able to tell, everybody ought to be amongst those worried well. As the number of cases spread within the non gay community, everybody is going

to be among that worried well. And again, the response to what can be done is the same. I think it's real important that people educate to themselves about what we do know, what we don't know about the illness, so that fear is not paranoia. There are some real things to be fearful of and let's get clear what those things are and not be fearful of things that aren't scary. And I think the other things people should be doing is rattling the cages of their elected officials and their appointed officials. I would like to see that the director of health in this state is doing a lot to address this problem any which way that he can and the director of health in this county and in each county in the state. I would like to see that our elected officials, we've got some pretty powerful people in Washington. I would like to see Senator Domenici make a specific focused effort to assure that there are adequate resources from the federal level that are available for hearing in New Mexico to address this. And I

would like to see continued pressure from all of our elected officials on the state and federal level to make sure that everything that can be done is done on time instead of too little too late, which is so often the case. The New Mexico Story AIDS, the New Mexico Story. Even that may be misleading for that which is conservatively called the disease of the century clearly knows no boundaries, state or national. Nor does anyone really know the whole story. It is as I suggested at the outset of these programs a medical mystery, a deadly and awesome one at that. Fortunately, despite some criticism here and there, those most intimately involved in the developing

AIDS epidemic in New Mexico, private individuals and groups and responsible public officials are beginning to approach its enormous challenges with a focus and commitment which is encouraging. For those already victimized by the fatal disease and for those who live in its shadow, it may be too little to lay. But bear in mind we are embarked upon an odyssey into the unknown. There is no cure in sight, no vaccine for prevention within our reach. God willing as the epidemic inevitably grows, we will keep our wits and our compassion and our common sense will help curb its spread. Thank you for joining us. I'm Hal Roads. Good night. Thank

you. For additional AIDS -related information, these organizations and individuals may be of assistance. Thank you. Thank you.

Thank you. Thank you. Thank you.