Charles Koehler 0:00 I'm Charles Koehler, and this is Lambda Reports, a weekly program by and for the St. Louis area lesbian and gay community. There's been a lot of press coverage recently on the issue of AIDS and HIV. The coverage has ranged from informed to sensationalistic to irresponsible. To give us yet another view on the topic of AIDS civil rights and what can be done about the epidemic in a responsible manner, are ACT UP members, Michael Sherbert and Kathy Johnson. Good morning, Michael and Kathy and welcome to Lambda Reports. Michael Sherbert 0:36 Morning. Hi, Charles Charles Koehler 0:37 Kathy, ACT UP has been around about a year now in the St. Louis area. And can you give us an idea of what's been happening? What's happened this past year? Cathy Johnson 0:46 Sure, we have just celebrated our first anniversary of our existence in St Louis, and we feel that we've really made a significant impact in the area of HIV and AIDS in St Louis. Before we were around most of the ASOS, the AIDS service organizations, and those people addressing the issues of aids were somehow tied into public or government funds, and therefore a lot of them felt that they couldn't act out or speak in a way that might upset some of the powers that be. Since we are strictly a volunteer organization, we don't have any of those concerns. So what we have done has ranged from civil disobedience to participating in some of the consortia and meetings in the St. Louis area, as well as lobbying and legal pickets. As an example, we've really influenced and changed how social security grants disability to not only people with AIDS, but any people who are entitled to disability. Charles Koehler 1:42 and that's in the St Louis area, we're talking about? Cathy Johnson 1:44 Specifically in the St Louis area, right? That was really our first major action. That's been significant, ee think. We've also done things like protested the appearance of Sam Kinison, a so-called comedian who is homophobic, racist, sexist. We've drawn attention to those kinds of issues. What are some of the other things that we've done, Jefferson City. Michael Sherbert 2:06 Yeah, I was going to add that statewide, we've we've joined forces, particularly with the people in Kansas City and and Columbia, to move to take action against, in Jefferson City, against statewide, regarding statewide issues of AIDS. Charles Koehler 2:22 Things that aren't as as progressive as they need to be. Michael Sherbert 2:26 We're disturbed by the by legislative trends, or the lack of some legislative trends. The way the Bureau, the statewide bureau of AIDS prevention, isn't that what it's called, (right) is, administers its money with gross inefficiency relative to the way that the local ASOS are able to administer their money. The per capita spending is much lower for local ASOS than it is in the Bureau of AIDS Prevention. Money being wasted in the AIDS bureaucracy in this state. Charles Koehler 2:56 You're saying that locally, that the expenditures of money is much more efficient. And, of course, we're always talking about limited funds, (right.) And you're saying that, as in the state itself, that that it tends to be less efficient, less cost effective, if you will. Cathy Johnson 3:13 Well, as, just as a, I think, kind of an irony. I don't think it's a coincidence that it's called the Bureau of AIDS Prevention, and the word Bureau is in bureaucracy. And in St. Louis, everyone who works in the HIV related fields knows that organizations like St Louis effort for AIDS and North Side AIDS are the agencies that provide almost all of the case management for people with AIDS, whereas the Bureau has, I believe, three case workers right now in St Louis, but there's a huge bureaucracy of people in Jefferson City, and they say they will tell you that the bulk of their money is spent on what they call surveillance and tracking, not on providing money to people with AIDS. And that's really our focus. We want the money to get to provide direct services to people with AIDS. Charles Koehler 3:59 What sort of direct services are we talking about? I mean, we've heard that term a lot, but what exactly is meant by that? Michael Sherbert 4:05 Well, there are a variety of services reflected in the various ASOS that we have locally. Many aid many people with AIDS have fundamental economic problems, economic challenges that that they face. They lose their insurance, and they have to go on Medicaid. They lose their housing. So we have an organization here called Doorways that provides housing for people with AIDS who cannot find housing elsewhere. They don't always have enough money to buy food, or they are not healthy enough to cook their own food. So we have an organization here called Food Outreach, which provides food services. These are basic life-giving services that these people require at the most crucial time in their lives. Cathy Johnson 4:47 Another basic need that really is unmet is transportation. A lot of people with AIDS can't get to the doctors or can't get to hospitals for basic for basic needs, and so we think we would like to see the money go to them, as well as things like Buddy services. The organizations that we've mentioned are all private, not-for-profit agencies that are almost, the services themselves are almost provided exclusively by volunteers. And we'd like, another area that we feel most people when they think of ACT UP, they think of us yelling and screaming and maybe raining down on in Jefferson City with flyers and leaflets. And of course, we did do that. We don't deny that at all, but we do also work behind the scenes, and we have directly affected, here in St. Louis there are something called the Ryan White moneys that are coming from the federal government. And we have participated on that consortia here in the city, and in a sense, really organized the local ASOS to say, we want that money not to go through Jefferson City and get stuck in the bureaucracy. We want that money here. And that's something that we did quietly and behind the scenes, and we feel we've been very effective. Charles Koehler 5:53 And by having it go directly to the direct service organization such as North Side Outreach and St. Louis Effort for AIDS, Doorways, and there's a number of other ones that you feel that that the money can be spent much more effectively and reach more directly to the people who need the funds. Some of our listeners might not be fully aware that AIDS, in addition to being a very devastating disease, is a very costly disease. We're talking about major expenditures of money. Cathy Johnson 6:27 Right. Just for basic medical maintenance you could be talking a couple of $1,000 a month, and that's gone down. Again, directly as a result of ACT UP's actions on a nationwide basis, they forced Burroughs Welcome to dramatically lower the cost of AZT. Charles Koehler 6:43 And AZT? Cathy Johnson 6:44 Is the only FDA, presently, the only FDA approved drug to treat AIDS. Michael Sherbert 6:49 So DDI is on the verge of being approved, so it looks like there's going to be an alternative soon. Charles Koehler 6:54 Okay. And neither of them, of course, are cures, but they help to prolong the life and prolong the quality. Michael Sherbert 6:59 And there's evidence to that that that AZT, when administered before the outbreak of what is called full-blown AIDS, can delay the, can delay its outbreak, so that it's it may be an effective preventive drug, and therefore needs to be taken by people who are HIV positive, but do not necessarily yet have AIDS. Charles Koehler 7:22 Recently in the in the news, there's been some talk about persons with AIDS and their records and the whole issue of patients confidentiality, and it's a very heated topic, and I'm sure there's a number of different viewpoints on this. What, how can you fill us in on what's been happening, some of the history, what's happened, why it's happened, and where things are going? Cathy Johnson 7:45 Well, we only have one viewpoint on this. Charles Koehler 7:47 Okay, so our listeners are forewarned. Cathy Johnson 7:50 However, I will say, as I've said before, although we can certainly be what some people would feel to be strident, we also do our homework and our research, and we don't shoot from the hip. This issue, I think, is a double barreled issue for a number of reasons. Charles Koehler 8:07 Okay. Cathy Johnson 8:08 The basic issue is, is that the State Department of Health, through their chief epidemiologist, Todd Baumgartner, has sent out letters to physicians treating people with AIDS. They are using St. Louis metropolitan AIDS program. Here in St Louis, most people know that as Metro AIDS, to go to physicians and say, you must turn over to us, you must report to us the names of all of those people in your practice who are HIV positive. And then also, when they get diagnosed with full blown AIDS, they are asking for their names, along with a multitude of other data about them. Our point on this is, is that the reporting is mandated by law. We have no disagreement with that. It is important for a number of reasons to be able to count cases. However, the Center for Disease Control in Atlanta, the CDC, does not require the names. We think requiring the names and threatening physicians with fines andor imprisonment is a severe breach of confidentiality. Now that's one part of the issue, which I think we would like to talk more about, but I'd like to also say the other side of the issue, as far as I'm concerned, this, to me, is very much like what happened in Fairview Heights with Planned Parenthood, if you'll recall, that was in the news, both the print media and the television media daily until it was resolved. The issue there was the state was trying to get Planned Parenthood to turn over the medical records of those young girls and women who might have been abused by a particular physician. Planned Parenthood as well as everyone else screamed bloody murder and said, Wait a minute, we have doctor patient confidentiality in terms of our records. My opinion and ours at ACT UP is that this is the exact same situation where they are trying to get into doctors files and get the names of people, the consequences to people being—their names being revealed with HIV—are severe. Charles Koehler 10:04 Can you give us some examples? Cathy Johnson 10:06 Lose their housing, lose jobs, get fired. Charles Koehler 10:10 We hear about these. Michael Sherbert 10:11 I mean, in fact, there's Charles Koehler 10:12 for many people that seems incredible, because aren't there laws that are prohibit discrimination against persons with AIDS? Cathy Johnson 10:19 There are laws that protect doctor patient confidentiality also. Michael Sherbert 10:19 There are, in fact, laws that prohibit discrimination against people with AIDS, but we know people personally who have been fired from their jobs when Charles Koehler 10:30 What recourse do they have? Michael Sherbert 10:31 They can, they can sue. They can, they can see a lawyer, and they are often told by the employer that they will be dead before the case will be settled. So Charles Koehler 10:39 something that we have heard of and seen time and time again is that the law yers on the the other side just keep on dragging on the case, and eventually the person expires. Of course. Then Cathy Johnson 10:51 there's the whole public exposure issues for someone in terms of family, friends, whatever the point is, a person should have a choice whether to reveal his or her HIV status, it shouldn't be forced upon them. And for example, we have anonymous testing in this state. It's been shown in states where anonymous testing existed for a while and then was retracted, that the amount of people getting tested decreases dramatically whenever Anonymous is taking away. And we know there is plenty of evidence to know that the earlier medical treatment can be involved, the longer and the better quality of life for people with AIDS. Charles Koehler 11:27 Let's back up just for a moment, because there's, there's been continued confusion on the whole issue of what anonymous testing means and what confidential testing means. Yeah. Michael Sherbert 11:36 and under anonymous testing you didn't you are not required to give your name when you are tested. There are three anonymous test sites here in Missouri, Kansas City, St. Louis and Springfield, elsewhere. Anyone else who wants to be tested who does not report to one of those sites must reveal his or her name when being tested. Now, oftentimes, the site will not require, will not check to make sure that you are revealing your real name, and therefore you can label yourself John Doe, and that's another way of circumventing the law. That would be considered confidential testing. That would be confidential testing. Unfortunately, what happens, the State has structured the system in such a way so to subvert anonymous testing because the law requires that, once a person has full blown AIDS, his or her physician report the name of that individual. Therefore you may test anonymously in Missouri, but eventually, if you remain in the State, you will likely get sick. And when you get sick, your name will go in. So So it comes down to just putting off the inevitable. The State has found a way of getting the names, even though we have structured an anonymous testing system in this state, Charles Koehler 12:51 it's just a matter of time. Cathy Johnson 12:52 Although many physicians do not report the names, and that's that really is the issue here, and the CDC, I think what Metro AIDS and the Bureau have tried to hide behind is saying it's federally mandated. What they're not saying is, what the CDC clearly has said is that they are not interested in having the names Charles Koehler 13:13 of a particular person Cathy Johnson 13:14 of a particular person. They they do not want to follow the particular person by a name. They want to know numbers, that's all, and that's the issue here. Charles Koehler 13:23 And ACT upUP of course, is very supportive of collecting statistics to Michael Sherbert 13:28 Absolutely. Cathy Johnson 13:29 We have no probelm with that. Michael Sherbert 13:30 In fact, there are states that, for epidemiological reasons, follow cases, but they identify these cases by code. Therefore there is, you have a code number that trails you through the system, but that code number is in no way associated with your person, just with your case. And what we fail to understand is why, if other states can can abide this sort of system, which ultimately protects the confidentiality of the patient, and Missouri is unwilling to do this. Charles Koehler 13:58 And I assume these programs in other states have been successful Michael Sherbert 14:01 Absolutely. Cathy Johnson 14:02 Well, Missouri is not known anywhere as being in the forefront of medical care as well as we're low in education and other kinds of monies. What? What I think I would like to see people do people with AIDS, I think is important is that they individually ask their physicians if they have turned over their names to the state. I personally have many friends who have paid out of pocket expenses for medication and exams because of their fears of reporting it on an insurance form, for example, and getting plugged into some big system with their names. What good will that do these people who have been paying out of pocket, in some cases, thousands of dollars to maintain their anonymity if their physicians are turning over their names. aAnd that's something, now we know some physicians are doing that. We also know others who have refused, and at this point, there's a strong possibility that the ACLU will become involved in this case for the reasons. We've talked about it's the doctor patient confidentiality. Michael Sherbert 14:02 because, in fact, the Department of Health here has sent out letters to local physicians threatening them with fines and imprisonment if they fail to comply. I understand you have a portion. I have the recent letter, which is a revised letter that they sent out about two months after the first letter. The first letter specifically outlined the terms of fines and imprisonment that doctors could be subjected to if they failed to comply with the state law about reporting. Charles Koehler 15:26 Now this letter is dated July 25. Michael Sherbert 15:28 This letter is dated July 25 and does not, repeats everything else in the original letter, but does not repeat the fact that there are that there are fines and imprisonment possibilities, and it does not volunteer to show up at the doctor's offices, which is another thing that the original letter did, not only the letter, they have done that. Yes, they haven't. They have shown up at doctors offices demanding to see the files. Now what they are, what the response of of Metro AIDS and the Department of Health, and this was a response given to me personally at a forum a few weeks ago is that they are not interested in going through all the files when they show up at a doctor's office. They want the doctor to provide them, supposedly, with those specific files of the HIV of his or her HIV patients, so that they may glean the necessary information. However, should a doctor refuse to do that the Department of Health does, in its literature, retain the right to go through all the files to find these cases so that they will conduct a blanket breach of doctor patient confidentiality, even of those patients who do not have HIV disease or AIDS in order to get the information that they want. Charles Koehler 16:37 So this could potentially affect every single person who's Michael Sherbert 16:41 Absolly Charles Koehler 16:41 seeing a doctor. Michael Sherbert 16:42 It is a it is a broad based civil liberties issue that that grossly transcends the the the limits of HIV disease and AIDS at this point. Cathy Johnson 16:49 What, what we should also add is, is, in terms of all these privacy rights, right now, we haven't stated that the government stands, the state government stands to get $4,500 per HIV reported case. So there's money to get to them. And again, our point is that money that comes into this state, the vast majority of it, does not go to direct services for people with AIDS. The other issue is, if they can do it now with HIV disease and AIDS, what happens if the next disease that some for some reason they get money from the federal government for is breast cancer or prostate cancer. That's my feeling. Also, I think you would see a lot bigger response from the mainstream media. The Riverfront Times had this as a cover story a number of weeks ago. I don't understand why the Post Dispatch won't pick it up, except as far as I'm concerned, the only thing I can figure is it must be because most of the people who get AIDS, especially in this in this city now, are gay people, people of color, IV drug users, people that are not considered to be particularly significant. It's not like your basic teenage girl or young woman or white middle class and the organization Planned Parenthood, which stood soundly behind their patients and said, we're not letting you get into these files. It doesn't matter if this is a clinic and not a private physician's office. And I think that's another story here that we seem to be very unable to get a kind of public response from. When we demonstrated at Metro AIDS a few weeks ago. We had what was our largest demonstration in St. Louis. Today, 30 people. We also had two people arrested. We went. We spent the morning at the jail. We couldn't get the Post Dispatch to get a reporter there. The TV stations were there and didn't do interviews, which is really the first, our first demonstration that they haven't done interviews. So it was really misrepresented in the press. And I think Metro AIDS has really been skipping around this. We're not thrilled about, in a sense, going against an organization that does provide some good services, one of them being anonymous testing. I mean that this … Charles Koehler 18:57 sounds like you're caught in a bind here. Cathy Johnson 18:59 Well, our, for us, our mission is clear that we're there to make the lives of those people affected and effected by HIV and AIDS. And in this case, Metro AIDS is carrying out through their surveillance department, the wishes of the state. And they're, they're not saying that they have any issue with it. They think they have a defensible position. We don't. Michael Sherbert 19:19 And I would add that I, I frankly, am very suspicious about Metro AIDS protestations that these names will remain confidential. We can envision a lot of very disturbing uses for these names. And I think in some ways, they are already being used in ways that are that are troubling. I believe that there is a tendency now to criminalize AIDS, and I believe that they will use these names in order to find out who are the doctors and medical care professionals in the state who have HIV disease and AIDS, and possibly to persecute them. I. Um, given the general fear of transmission of AIDS from medical professionals, now that we have lately, the AIDS phobia has evolved into that, into that realm, and I think the state may respond by trying to chase some of these people out of their jobs. Charles Koehler 20:16 So in short, what you're saying is that you're making a recommendation that could be very easily implemented by the state and locally by Metro AIDS that has been done in other cities. Cathy Johnson 20:29 The vast majority of states in the country, is how they do it. Charles Koehler 20:32 That's the only thing you're asking for, is that they do the same thing. Cathy Johnson 20:35 That's it. We don't want them to change the reporting. We don't want them to change counting. We don't want them to change following people, but anonymous means just that anonymous. Charles Koehler 20:43 You're very supportive of tracking when, when you know when it's supported for medical research and everything else, because it helps. Cathy Johnson 20:51 Without nams Charles Koehler 20:51 without names, Michael Sherbert 20:52 because it may help people down the line. Cathy Johnson 20:53 Right. Charles Koehler 20:54 Absolutely. Cathy Johnson 20:54 And, you know, I think this hysteria that's going on now in the medical profession, I think, is also interesting. You know, it's been portrayed, I think, in the general media over we're now in the second decade of AIDS, the 11th year, it's been portrayed that these are people that get this disease are them; It's not us. And I think when we start talking about physicians and dentists and people in so called the medical professions getting the disease, which, of course, everybody is suspect to get the disease, then I think it starts crossing over into us. And I think that there's a lot of hysteria around that. In fact, there has been possibly one documented case in the country from a medical profession, professional passing that disease, and that's the dentist in Florida, and there seems to be some question about what types of procedures he used. There has been no other Charles Koehler 21:47 sterilizes, Cathy Johnson 21:48 sterilizes instruments. The far greater risk is from patient to the medical professional, absolutely. But there seems to be a lot of hysteria over people and their physicians, and now we know that people are being contacted if their physician has died of AIDS, that's one thing. What will happen if it gets out that their physicians are HIV positive or not sick or not performing invasive procedures? It seems to me, then we're talking about changing people's lives in such a dramatic way that is not only unfair, it's unwarranted. Charles Koehler 22:18 Would it be fair to say, though, that that ACT UP is supportive of persons who are HIV positive, taking responsible actions to prevent the transmission of the disease. Cathy Johnson 22:31 Absolutely. But one of the things we do is promote safer sex. We give out condoms. We are all for people being safe. And Charles Koehler 22:38 Let's take a case of a medical professional, okay, if indeed a medical professional who is HIV positive is performing procedures that are invasive into body cavities that would perhaps lead to a risk of transmission, you would be supportive of having that person consider no longer engaging in those activities. Michael Sherbert 23:04 Well, for a start, we would support that person's adherence to the guidelines established by the Centers for Disease Control, absolutely, which are our simple, universal precautions having to do with the wearing of gloves, the wearing of masks, the proper disposal of needles, which dramatically reduce the risk of AIDS transmission. Charles Koehler 23:26 And that applies not only to AIDS, I might add, but also to H-I, to hepatitis. Michael Sherbert 23:31 Absolutely Cathy Johnson 23:32 It's and it's much more easily transmitted. Charles Koehler 23:35 It can be very deadly, as the statistics point out. So you're supportive of rational, reasonable responses, Cathy Johnson 23:43 Absolutely. Charles Koehler 23:45 We read recently in Newsweek and other magazines, in the newspaper about the group's ACT UP and and also Queer Nation. How does the group, Queer Nation, differ from ACT UP and what is this? Cathy Johnson 23:58 Well, Queer Nation, in a sense, came out of the ACT UP movement. We are a group of individuals that have come together around a specific issue. We being ACT UP, which we haven't really said act up for those people that don't know, stands for the AIDS Coalition To Unleash Power, and it was founded in 1987 by Larry Kramer in New York as a response to the lack of the government's response to this epidemic. Queer Nation, in a sense, has come out of a similar type of feeling that—it's a year old and was also started on the coast, and what they promote is what they call queer visibility and promoting the rights of people who are gay and lesbian to exist and have all the rights that are supposed to be there for all Americans. Charles Koehler 24:48 Not special rights. Cathy Johnson 24:49 Not special rights, just the rights that everyone else is supposed to have under the Constitution. And they're also saying, well, they're sort of, there's trademark slogan is we're here, we're queer, get used to it, just taking the word queer in their name, which has certainly been a pejorative word over the years. What they've said is, we're taking that back. You can't call us that and that be bad, because we're saying it's okay. And it's also a word that Queer Nation has used to sort of capture both gay and lesbian. It's non-gender specific. They they do many similar things in terms of direct action. Their issues are always specifically around gay and lesbian visibility, whereas ours, of course, many of the issues around AIDS and AIDS-phobia is directly related to homophobia. Our issues really always include the main issue of AIDS. And that's not true with queer nation. Michael Sherbert 25:41 And In fact, locally, we have ACT UP members who are not who are straight. So so sexual orientation is not the primary focus of our organization. Charles Koehler 25:53 What are some of the things that we can expect to see in the future? We've got about a minute or so left in the St. Louis area. Cathy Johnson 26:01 Well, for right now, this is our big issue, the one we've been talking about. And I think it would not be unlikely to expect a similar type of statewide action we've been talking with Kansas City. And it's possible that we, as long as this issue, as long as they continue to try to get the names, we will keep this issue alive. Charles Koehler 26:20 And if they switch that focus to merely tracking by numbers or some other means? Cathy Johnson 26:24 Move on to other issues around AIDS phobia and prejudice and discrimination. Charles Koehler 26:29 It sounds like there's a lot of other issues still out there. Cathy Johnson 26:31 Unfortunately, there are. Michael Sherbert 26:32 They multiply daily. Charles Koehler 26:35 Any closing thoughts that you have> Michael Sherbert 26:39 I think that after a year, we're we're strong, we're growing, we're we're excited about the future, because I think we have caught on in this town. I've been impressed at how much respect we have earned from local ASOs, who have really come to depend on us as the sort of frontline people to keep this issue before the media and to affect some real change. And I think we're established in this town as a positive force for people with AIDS, and we're going to be around for a long time to come. Charles Koehler 27:08 One of the things that I've been impressed with is the health care providers, the nurses, the doctors, the people on the front lines that see some of the things that that act up has done to create change in a positive direction, and are very supportive. I mean, it's very heartening, Cathy Johnson 27:28 Charles. I just also like to add that we are an open public organization. We welcome people to come to our meetings, if you just like to observe and not participate. We meet the third Tuesday of every month at the offices of St. Louis Effort For AIDS. That's on 5622 Delmar Michael Sherbert 27:44 7:30 Cathy Johnson 27:45 at 7:30 and our next meeting is August 20. Charles Koehler 27:48 Great well, Kathy and Michael, thanks for being with us, and I wish you the best in making positive changes continue in the battle against the epidemic of AIDS and the battle against ignorance of the disease and the people that it touches. Again, if you are listeners would like more information on act up. You can call at 535-8586, that's 535-8586 or write to ACT UP. Post Office Box 16899, St. Louis, Missouri, 63105. You know, ACT UP is one of many responses in a spectrum of responses to the AIDS epidemic. I'd like to, at this point, to announce that this October 14 through 20th in the St. Louis area, there will be a coordinated metropolitan St. Louis area wide response with the AIDS awareness week.Tthis week of AIDS of St. Louis area wide, workshops, seminars and events will culminate with a major display of the names project AIDS Memorial Quilt on October 18, 19th and 20th. If you'd like more information about this display and how you can help, you can call the NAMES Project information number at 879-8115, that's 879-8115. Until next week, this has been Charles Koehler for Lambda Reports. Tune us in again, same time, same station. Transcribed by https://otter.ai