In the Life: Interview with Mark Milano [unedited footage]

[Mark Milano:] ... as the Crixivan mountain climbing ads, it was young attractive men in mountain climbing shorts. Like, now they're on Crixivan, they had achieved the, the peak of the mountain. And it really gave the impression that having HIV was just about taking some pills and then you would look fabulous and be fabulous. And there was a real outcry from people with HIV and from the FDA itself, saying, "You are not telling the truth here." The fact of the matter is, people with HIV are living longer because of the new medications. And there has been a dramatic turnaround in the death toll from AIDS because of the medications. At the same time, it's really a double-edged sword. The medications have a number of serious side effects, both in the short term and in the long term. The side effects build up over time as you take many of the drugs. So, presenting these drugs as simple, easy to take, side effect-free medications is very misleading. And the fact of the matter is many young gay men now think that getting HIV is just about taking some pills, because they haven't watched their friends die the horrible deaths we all saw our friends die. So there isn't the fear of HIV that we need in order to keep people safe. I mean, it's been shown that fear is not a tremendously effective tool, in terms of preventing STDs in general, but it still needs to be there somewhat. People need to be frightened of getting HIV. You need to know that having HIV is lousy, and, and the medications are pain, and it's very difficult to live with this illness. When the ads present - there's a Trizivir ad out that shows a very cute guy who looks great, holding one pill. And you get the feeling that, well, if I get HIV, I just take a pill and I'll be fine. They do have on the next page tons of fine print of all the side effects of this drug, but have you ever read that stuff, in, in an ad? You turn to the next page, right? I don't think anybody has ever read that page. So it's what's on the main page that counts, and, and that's misleading. So, the companies did claim they were pulling back. And they have dropped, you know, the mountain climbing buff men ads. But they're still presenting, I think, an idealized view of living with HIV in these ads. [Interviewer:] Excuse for one second. Just to return more generally to the issue of cost. What sort of specific figures have you amassed about the relationship between drug costs and advertising? [Milano:] Well, for years we tried to get the drug companies to reveal the actual manufacturing costs of their drugs. You know, three-drug therapy here in the U.S. costs between 10,000 and $15,000 a year, and we always thought that was wildly high price with, with grossly exaggerated profits. They would never tell us what the drugs actually cost to produce. Because of the fight to get drugs overseas, and the fact that generic manufacturers in places like India are now making these drugs, we know that those same drugs that cost $15,000 a year, actually cost less than $300 a year to make. So the actual manufacturing cost is, is very small compared to what they charge for the drugs. Now, then they say, well, we have to charge that because of all the research costs. The figures we have, show that in their annual reports, I believe, it's something like 17% of their annual costs are for research, and like 54% are for marketing. So they're spending far more on marketing than they are on research. And they could easily drop tremendous amount of that marketing and lower the price of these drugs. We want them to make a profit. We just want the profit to really be based on their actual development, manufacturing, overhead, and not just a price that they pick out of the air. You know, they are the most profitable legal industry in America. They make four to five times the profit of other major companies like GM and AT&T. They're making enormous profits and their costs really don't justify that, from what we've been able to determine. [Interviewer:] Now Mark, GSK, Bristol Myers Squibb had a agronomic - we talked about it on the phone - approach. What needs would these [...] different companies - what is it that they are actually spending on marketing and advertising according to the figures you've amassed? [Milano:] I don't have actual dollar figures. You know, we, we did an overview of a number of companies to look at the annual reports. And, and found a figure, you know, that somewhere of 50, close to 50% of their costs are geared towards marketing. I think that varies from company to company. Some companies do more, some companies do less. You need to know that drug companies have an enormous reach when it comes to getting their drugs into people. They begin buying books for medical students. They take doctors out to lunch. They hold seminars in which paid consultants promote their drugs. And they do television advertising and advertising in magazines. So it's, it's, it's a tremendous variety of things they use to promote their drugs. We think it's inappropriate. We think a decision to use a drug, it is, is a decision between a patient and a doctor. They need to look at the drugs, to look at the data, to make a decision what drug is appropriate, and to take that drug. There are now 17 drugs approved to fight HIV. But many people can't take those drugs because of side effects or because they're resistant. That number gets whittled down very quickly. So your options are limited based upon what you can take. And then you want to look at, what is the data out there. You know, a trial comparing Trizivir to another combination really was stopped early because the Trizivir was less effective than the other regimen. So you want to look, how does my combination stack up in terms of efficacy compared to other treatments. It's a complicated thought-out decision that a patient needs to make with his or her doctor. It's not something that you make by looking at an ad in a subway of some cute guy in a bicycle saying, "I take Zerit." You know, I don't know exactly who these ads influence and how they influence, you know. If I see a cute guy on a bicycle in an ad for Zerit, am I gonna go to my doctor and say I want to take Zerit because I ride a bicycle? I don't know. It just doesn't make sense to me. It trivializes the decision-making process. [Interviewer:] Now, so then as an AIDS educator, do you have people coming to you saying, "Cute guy on a bicycle, how about Zerit?' [Milano:] No, I think it's not that conscious. But, but, but I think - and I don't actually know what the company's marketing divisions have done to show that this approach works. I think frankly, these are advertising people who know that if you want to market a product, you put a cute attractive person in the ad and that's how you market your product, to say, you know, "I use Dove and I'm attractive." You know, and you, "I use my soap and look at me." And the same thing with, with AIDS drugs. It's, it's absurd. A lot of the marketing of AIDS drugs has been done through classic marketing techniques that are used for sneakers or cosmetics or whatever. It's inappropriate. You know, this is a life-threatening illness. These are serious decisions that need to be made over time, and I, I just see it as A: a waste of money and B: doing more harm than good, in that it's giving, particularly young gay men, the impression that AIDS is over, that it's controllable, and that it's not that scary to get HIV. Where are the pictures of the people who have lipoatrophy? Which is the loss of fat in the, in the face. You maybe have noticed people who have very sunken cheekbones. If you get that side-effect from HIV drugs, it's irreversible. It cannot go away unless you get silicone injections in your face. Lipodystrophy, the increase in the stomach and the loss of weight in the arms and legs is also very difficult. High cholesterol, high triglycerides, risk for heart attacks, all these things, you know. Where is that in these ads? I don't see anybody with lipodystrophy in these ads. So, we have to make people aware that, yes, there is hope. If you have HIV, the message should be that, you know, there is a possibility for a long life because of the advances that are made. But at the same time, if you don't have HIV, be aware, it's really a pain to try to manage this illness and it's not just taking a pill. [Interviewer:] Two questions. I guess the first one would be, in terms of the decision making process, you're talking about different options getting whittled away because of, you know, what you are and are not responsive to. How much does cost come into that? [Milano:] If cost is an issue for an individual, I think all the drugs are out. I mean either, either you have Medicaid health insurance or ADAP, or you don't get the drugs. Now I don't think there's anybody out there who can afford to pay $15,000 a year for their drugs. So either you find reimbursement or you don't take them. The real problem now, is that the programs that offer these drugs, particularly ADAP programs are being really strapped because of the new prices of the drugs. The most current drug Fuzeon, which was just released a couple weeks ago, is going to have a retail price of about $25,000 a year. That's going to put a tremendous burden on ADAPs, which have a limited amount of funds. So what's happening in some ADAPs, in order to cover the cost of these drugs, and, by the way, all the HIV drugs which range from, range from between 3,000 to $9,000 a year individually, they up the price like five percent every year. It just slowly keep creeping the price up. Because of that, these programs have to either increase their waiting lists or cut other drugs that they cover. So people with HIV are being denied access to the drugs we needs, besides the HIV drugs, and also, the waiting lists are being increased or the eligibility. It might - in Texas, they just lowered, I think it was, you had to make less than $26,000 a year to get in the program. Now, it's down to $19,000 a year. So that's making it much more difficult to get into the program. So the prices of the drugs are limiting access, in general, to people with healthcare, particularly those on ADAP. ADAP is for people who make too much money for Medicaid, but don't have health insurance. And I'm sure you have a lot of friends who are like that, who need ADAP. ADAP's being really stressed by the price of these drugs. We say, cut the advertising, cut the price of the drugs. You know, people can make these decisions for themselves without subway ads. [Interviewer:] To go to a very different kind of advertising, I spoke with Ann this morning about the David Kirby Benneton campaign. [Milano:] Mmm hmm. [Interviewer:] from 1992. I know that's specifically not for a specific drug. I'm wondering if that's perhaps closer to, um, [Milano:] I recall the campaign. Can you refresh me again as to what it was? I think I recall [...] [Interviewer:] David Kirby looking quite a lot like Jesus in a gurney, with his family crying around him. And there's a shot of the Virgin - or there's a painting of the Virgin Mary right above him. [Milano:] Uh huh. Uh huh. I gotta say, you know, I, I recall that vaguely. I - it's a real question as to what kind of image you present of HIV and AIDS now. Certainly in '92, I had many, many friends die horrible deaths from AIDS. We don't want to give people the impression that it's like that now. It is dramatically different. I have many, many people that I counsel who are doing quite well on the medications. It's, the, the change is dramatic. But at the same time, having this disease is very difficult, you know. It changes your life in ways that you never imagined. And dealing with the drugs and dealing with the side effects and dealing with the fact that you really can't miss any doses. I'm sure you've had to take antibiotics for a couple of weeks when you were sick with something? And you probably missed like a dose here or there because we all do. You do that with HIV and the drugs will stop working for you. You can miss one dose, but you miss more than a couple and you're in trouble. So, taking these medications precisely, dealing with the side effects, dealing with everything else that comes along with HIV. We need to somehow present that honestly without telling people with HIV, you're gonna end up, you know, in this hospital gurney looking like a concentration camp victim, you know. You don't want to go that far, but you also don't want to sugarcoat it. So, it's a real question. I find the ads that I see out there now, you know, too much on the positive side. And yeah, I would like to see more honest images of people with HIV, who look like the people with HIV I see, which are people, really kind of ravaged by this disease. [Interviewer:] I'm fascinated by where that breakdown might occur then, because of the fact that pretty much all of these models who appear in the Crixivan campaign or the Advair campaign, Advira, excuse me, are HIV positive themselves. [Milano:] Mmm hmm. [Interviewer:] How do you see that breakdown happening? [Milano:] It certainly is possible to have HIV and look great. I mean, I've had HIV for - since '81. I don't think I particularly look ill, I know. So it's possible to have HIV for a long time and look good. But that's not presenting the whole picture. You know, the reality of the disease is that it is a constant battle. Your body is destroying and replacing billions of CD4 cells every day. It puts a tremendous strain on your body. And, and so the reality is, is that most people with HIV are going to not look like fashion models. And advertisers are locked into this idea that we present beautiful people in our ads. So, you know, on the one hand I would say if you're gonna do ads, give us more realistic people with HIV that give a better indication of what life with HIV is like. And on the other hand I say, you know what, just stop the advertising and cut the price of your drugs. You know, that's really what we want. It's - at the same time, you know, the ads do support a lot of noteworthy publications. And there are good publications out there that really rely on the money from these ads to get their information out. So, that's a real double-edged sword, you know? Do we - I think the money for those things should be coming from foundations, maybe rather than drug companies. Rather than paying absurd prices for these drugs, in order to keep, you know, HIV publications going, I'd rather we lose the ads and get the money elsewhere. [Interviewer:] What publications are these ads supporting? [Milano:] Oh, many. POZ, HIV Plus... [Interviewer:] I'm sorry can I interrupt you for a second? Would you mind phrasing that [...] [Milano:] Oh, sure. Sure. Many publications rely on these ads for their funding and that includes POZ, HIV Plus, A&U. There are other ones too. So, and they're good publications. They give good information. And they do give critical information about the drugs and report from scientific conferences. So I think actually many of those companies, those magazines, might fold if, if the drug company ads dried up. So it's a double-edged sword. I wish they could find the funding elsewhere rather than from relying on drug company ads. [Interviewer:] To return to your point about Fuzeon, that you made a little bit earlier. What kind of effects might Fuzeon have on AIDS advertising and the face of AIDS that we see? [Milano:] I, I'm not really sure... what their advertising campaign is going to be. I just know that the price of the drug is going to put a tremendous burden on the programs that pay for these drugs. I also know the drug is going to require a tremendous education campaign in order to be able to be used. It's an injection twice a day. The injections have to be done very carefully. Has to be mixed and it has to sit for half an hour before you inject it. You have to rotate the sites, because it causes reactions at the injection sites. It requires a tremendous amount of patient education. I think it is the drug company's responsibility to pay for those materials, to do the education. If they do do an ad campaign about this drug, I don't know if they will or not, they better very clearly indicate, you know, how difficult this drug is to take. The ad campaign for Kaletra, is a pair of hands holding a flower. You know, what does that mean? If they do something like that for Fuzeon, you know, they just have some magical image that means nothing, it's not telling people, "Hey, this drug is probably the most difficult of any AIDS drugs to take and you better be prepared what - when you start it." People with Hepatitis C, who are taking alpha interferon for that, you know, need to know that that drug comes with some serious side effects. I don't really think the promotion for those drugs have really emphasized that. So we have to present a balanced view. And I hope that if Roche does a campaign for Fuzeon, you know, they, they make sure people know that. I, I would guess that they won't. [Interviewer:] I'm curious...